Public Hearing - June 03, 2021

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 2      ----------------------------------------------------

 3                     NEW YORK STATE FORUM

 4                    A ROUNDTABLE DISCUSSION


 7      ----------------------------------------------------


 9                               Virtual Roundtable via Zoom

10                               June 3, 2021
                                 Time:  1:00 p.m.

           Senator John W. Mannion
14         Chairman
           Senate Standing Committee on Disabilities

16      PRESENT:

17         Senator Michael Martucci (RM)

18         Senator Simcha Felder

19         Senator Roxanne J.Persaud








        SPEAKERS:                               PAGE  QUESTIONS
        Dr. Theodore Kastner                      17      31
 3      Commissioner
        Office for People with
 4        Developmental Disabilities (OPWDD)


 6      Marco Damiani                             58      65
 7      AHRC New York City

 8      Alyssa Galea                              61      65
        Staff Attorney
 9      Disability Rights New York (DRNY)

10      Erik Geyser                               63      65
11      Arc New York


13      BJ Stasio                                 70      93
14      Self-Advocacy Association of
          New York State (SAANY)
        Yvette Watts                              72      93
16      Executive Director
        New York Association of Emerging &
17        Multicultural Providers, Incorporated

18      Jim Moran                                 74      93
19      Care Design New York

20      Michael Seereiter                         79      93
        President and CEO
21      New York Alliance for Inclusion
          and Innovation
        Rhonda Frederick                          86      93
23      CEO
        People, Inc.



        SPEAKERS (cont):                        PAGE  QUESTIONS
        Kathy Bunce                               89      93
 3      Steering Committee Member
        State-Wide Family Advocacy Network
 4        of New York, and
 5      DDAWNY Family Committee

 6      Karen Nagy                                91      93
        Steering Committee, Communications
 7      Eastern New York Developmental
          Disabilities Advocates
        Randi DiAntonio                           96
10      Vice President
        Public Employees Federation
        Cynthia Borozny                          100
12      CFO
        Arc New York
        Margaret Raustiala                       102
14      Steering Committee Member
        State-Wide Family Advocacy Network
15        of New York

16      Tom McAlvanah                            105
17      New York Disability Advocates, and
          InterAgency Council of
18        Developmental Disabilities

19      Alyssa Galea                             109
        Staff Attorney
20      Disability Rights New York


22      Joshua Terry                             116
        Legislative Director
23      CSCA Local 1000

24      Marco Damiani                            118
25      AHRC New York City


        SPEAKERS (cont):                        PAGE  QUESTIONS
        Rachelle Kivanoski                       120
 3      Steering Committee
        NYC FAIR
        Michael Seereiter                        123
 5      President and CEO
        New York Alliance for Inclusion
 6        and Innovation

 7      Jim Moran                                127
 8      Care Design New York

 9      Julie Keegan                             128
        PADD Director
10      Disability Rights New York

11      Randi DiAntonio                          131
        Vice President
12      Public Employees Federation

13      Peter Zummo                              134
        Executive Council
14      New York Alliance for the
          Developmentally Disabled
        BJ Stasio                                140     150
17      President
        Self-Advocacy Association of
18        New York State (SAANY)

19      Peter Zummo                              142     150
        Executive Council
20      New York Alliance for the
          Developmentally Disabled
        Susan Constantino                        144     150
22      President and CEO
        CP Unlimited
        Margaret Raustiala                       147     150
24      Steering Committee Member
        State-Wide Family Advocacy Network
25        of New York


        SPEAKERS (cont):                        PAGE  QUESTIONS
        Susan Constantino                        153
 4      President and CEO
        CP Unlimited
        Yvette Watts                             156
 6      Executive Director
        New York Association of Emerging &
 7        Multicultural Providers, Incorporated


 9      Kathy Bunce                              160
        Steering Committee Member
10      State-Wide Family Advocacy Network
          of New York
11      Co-chair
        DDAWNY Family Committee
        Karen Nagy                               163
13      Steering Committee, Communications
        Eastern New York Developmental
14        Disabilities Advocates

15      Tom McAlvanah                            166
16      New York Disability Advocates, and
        InterAgency Council of
17        Developmental Disabilities

18      Gail Hamlin                              170
        Executive Council
19      New York Alliance for the
          Developmentally Disabled

21                            --oOo--






 1             SENATOR MANNION:  Good afternoon.

 2             I'm John Mannion, Senator, and Chair of the

 3      Senate Standing Committee on Disabilities.

 4             It is 1:00 p.m. on Thursday, June 3rd, and

 5      I'm convening the New York State Senate Roundtable

 6      to Evaluate the State's Response to COVID-19 at

 7      Residential Facilities for Developmentally and

 8      Intellectually Disabled Individuals.

 9             I'm joined by my ranking member,

10      Senator Michael Martucci.

11             And we also have been joined by

12      representatives of Senate staff, including

13      Senator Brooks, Senator Reichlin-Melnick,

14      Senator Kaminsky, Senator Gallivan, Senator Mattera,

15      and Senator Breslin.

16             I'd like to thank all my colleagues on the

17      committee for moving so many important bills this

18      legislative session.

19             We'll be speaking about some of those bills

20      today because they relate directly to OPWDD's

21      pandemic response.

22             When I was named Disabilities Committee

23      Chair, I said I wanted to be a champion for this

24      community.

25             This roundtable is the most significant


 1      action the committee has taken in its short history,

 2      and it continues the Legislature's renewed focus and

 3      commitment to the IDD community, our -- and their

 4      families.

 5             The committee takes its oversight

 6      responsibility extremely seriously.

 7             I view our mandate today as getting answers

 8      for families and individuals.

 9             Our support for IDD New Yorkers takes many

10      forms.

11             I should include that we are joined by

12      committee member Senator Simcha Felder.

13             During the budget negotiations, the

14      Legislature completely rejected the Governor's cuts

15      to OPWDD services.

16             We secured a cost-of-living adjustment for

17      the IDD workforce, the first one in over 10 years.

18      And I was proud to sponsor a vaccine clinic in

19      Onondaga County where we administered single-dose

20      Johnson & Johnson shots to over 200 IDD New Yorkers

21      and their caregivers.

22             We also recently announced funding for

23      Special Olympics unified sports programs, and were

24      able to deliver good news to a north Syracuse

25      family, that one of the members will be going to


 1      Disney World for the 2022 Special Olympics U.S.

 2      games in Orlando, Florida.

 3             The work that we do is real, and the results

 4      are real.  Our commitment is unwavering.

 5             Today we are joined by family advocates,

 6      self-advocates, providers, and other stakeholders,

 7      including DSP representatives.  They come from every

 8      corner of New York, and I believe they have the

 9      greatest insight and perspective, including their

10      personal experience with OPWDD's COVID-19 policies

11      and actions.

12             Thank you to all of our panelists for your

13      continued advocacy, and for taking time out of your

14      day to explain your experiences to the Senate and to

15      your fellow New Yorkers.

16             Every effort was made to ensure our panelists

17      are representative of OPWDD's service community.

18             Due to the format and time considerations, we

19      cannot accommodate all parties that wish to speak in

20      person today.

21             We have received written statements from the

22      Public Employees Federation, Michael Carey,

23      Jim Moran, Nick Cappoletti, Russell Snaith, and

24      Susan Hamovitch, that have disseminated to every

25      member of the New York State Senate.


 1             All materials related to this roundtable will

 2      be posted on the Senate website.

 3             We are also grateful to OPWDD for agreeing on

 4      the importance of having this conversation.  That

 5      agreement is evidenced by the participation of OPWDD

 6      Commissioner, Dr. Theodore Kastner.

 7             Dr. Kastner is familiar to many of us.

 8             His appearance before the committee today

 9      lends additional credibility to our work, and I look

10      forward to hearing his insights in just a moment or

11      two.

12             The Commissioner will be our first speaker,

13      and will appear solo to allow for an extended

14      conversation with senators.

15             The Commissioner will be leaving after our

16      initial question-and-answer section, and then we

17      will begin our panel portion of the program.

18             I will first say what I hope this exercise

19      today is not; that it is not a forum to score

20      political points, nor would it be a forum for unruly

21      or disrespectful behavior, and it's not a forum to

22      spread misinformation of any kind.

23             We are going to -- what we are going to do is

24      begin to set the record straight, and make sure that

25      the waters are clear.


 1             As the moderator, I expect all participants

 2      to be professional, adhere to time limits, and help

 3      uphold the decorum of this proceeding.

 4             I believe today is an important step towards

 5      a fully transparent and public accounting of OPWDD's

 6      COVID-19 response.

 7             In addition to the facts that will be entered

 8      into the public record today, the Senate and

 9      Assembly have passed Senate Bill 6294, which is my

10      legislation, mandating that OPWDD to produce a

11      public report, evaluating its COVID response.

12             I want to memorialize the agency's challenges

13      and its successes so that we have the information we

14      need to strengthen its response to future public

15      health emergencies.

16             I'd also like to mention Senate Bill 6295,

17      that is my bill, mandating OPWDD purchase and

18      provide PPE for all DSPs, residents, and other

19      staff during declared health emergencies.

20             Make no mistake, the information ascertained

21      today will be used to influence future public policy

22      and future funding priorities.

23             Today's format will be an official New York

24      State Senate roundtable.  I believe strongly that

25      this is the perfect format for this conversation.


 1             All participants, from the Commissioner on

 2      down, are all here willingly and are eager to

 3      discuss today's topics.

 4             Those topics will be almost entirely related

 5      to the pandemic response; however, we will take

 6      advantage of this opportunity to delve into some of

 7      the systemic issues that are plaguing the field.

 8             Today we will be very thorough.  I believe it

 9      will be extremely worthwhile.  And I believe this is

10      in the very best spirit of good government and

11      legislative oversight.

12             However, I will also remind everyone that

13      this body has additional investigatory tools and

14      resources it can use to compel information and

15      testimony.

16             Let's begin with an overview of our topics

17      today, which are:  Reporting and transparency.

18      Program flexibility and new models of care.

19      Personal protective equipment.  Staffing (video and

20      audio lost) and testing.  Visitation.  Vaccination.

21      Fiscal impact and other challenges.

22             Each panelist will have two minutes to speak,

23      followed by a question-and-answer portion.

24             I would like now to offer ranking member of

25      the committee, Senator Martucci, up to five minutes


 1      for his opening remarks.

 2             Thank you.

 3             Please go ahead, Senator Martucci.

 4             SENATOR MARTUCCI:  Thank you, Chairman.

 5             I appreciate the opportunity to be here and

 6      express my views on these matters that, I think

 7      we're all in agreement, are so important to our

 8      state and to our IDD community.

 9             I also appreciate your friendship and

10      partnership on these important issues that impact

11      our most vulnerable citizens.

12             Chairman, you have always been -- approached

13      this the same way I have, which is in a bipartisan

14      manner.

15             I certainly appreciate that, and I think we

16      made a good team for that reason.

17             We're not here for politics, I agree with

18      you, Mr. Chairman, but to get to the truth, and to

19      be a voice for families who have lost loved ones due

20      to the misguided policies of the administration.

21             I feel it's incumbent on us to get some

22      answers and not be distracted.

23             Regardless what our governor says, all the

24      lives lost in nursing homes in our OPWDD facilities

25      matter.


 1             And how and why they died is a legitimate

 2      issue for us as a Legislature to examine, but is the

 3      key issue that we need to be examining.

 4             I am disappointed that we're here at

 5      roundtable today rather than a hearing, where we

 6      could have, if necessary, issued subpoenas to

 7      witnesses, and for documents.

 8             I'm disappointed that it took us this long to

 9      have a public forum, but I'm certainly glad that we

10      are finally here.

11             But I'm most disappointed and, frankly,

12      pretty mad, that we're not focusing the efforts of

13      this forum on only two things:  The deadly OPWDD

14      order of April 10, 2020, and the staffing crisis

15      that's crippling our facilities and exhausting our

16      hard-working providers.

17             The other issues in our discussion, and this

18      list is surely important, and I'm concerned about

19      them too, but what I see the widening list of topics

20      to be is a way to water down the real discussion on

21      what we should be having, and for that I'm very

22      disappointed.

23             With regard to the April 10th order, here are

24      the key questions that I have today, which should

25      come as no surprise:


 1             1.  Why did Commissioner Kastner issue the

 2      April 10th order that required the readmission or

 3      admission of COVID-certified residents to these

 4      facilities?

 5             2.  Why has the department refused to even,

 6      up until today, which is June 3, 2021, when we know

 7      of the awful impact of this, orders of this nature,

 8      refused to rescind it, considering that there was a

 9      459 percent increase in the deaths at group homes in

10      April of 2020 compared to April of 2019.

11             Individuals in these homes were three times

12      more likely to be infected and to die from COVID

13      than in the general population.

14             And, 3.  What communications did

15      Commissioner Kastner and his department have with

16      Governor Cuomo, the Governor's senior aides,

17      Commissioner Zucker, or anyone else in the

18      administration about this order in question?

19             Why has the Commissioner utterly refused to

20      provide those communications to me or to this

21      committee?

22             Basically, it comes down to the simple

23      questions of:

24             What did the department know, and when did

25      they know it?


 1             And most importantly, what role did

 2      Governor Cuomo, who we now know covered up the

 3      deaths of nearly 15,000 elderly people in nursing

 4      homes, play in this decision-making?

 5             I made attempts to collect this information.

 6      And after writing OPWDD and its commissioner

 7      directly months ago, requesting this information,

 8      I received only a partial response.

 9             Conspicuously missing from this response were

10      correspondence with the Governor's office that

11      I requested with respect to this April 10, 2020,

12      order.

13             When I publicly criticized OPWDD for failing

14      to reply completely to my inquiry, the response was,

15      quote:  OPWDD is proud of the significant efforts

16      New York has made to ensure the safety of people

17      with developmental disabilities during the pandemic,

18      and strongly disagrees with the misrepresentations

19      and false narratives being perpetuated by certain

20      politicians for apparent political purposes.

21             I know that this response was referring to

22      me.

23             And what all New Yorkers now know is that the

24      same narrative, which was sold to us for months

25      about deaths in nursing homes, was a lie.


 1             That's why we're desperately looking for

 2      answers today.

 3             On the staffing crisis, the Chair and I both

 4      wrote Dr. Kastner in strong opposition to cuts to

 5      the voluntary residential program.

 6             These have not been delayed or rescinded

 7      despite the massive infusion of cash in our budget.

 8      And not only should these cuts be rescinded, but

 9      I believe they imperil the ability of the

10      department.

11             It's also important that we use these funds,

12      the Home & Community-Based Services' federal medical

13      assistance money that's been allocated in the recent

14      COVID relief bill, to address just this.

15             Simply put, we don't need to make these cuts,

16      and our overworked staff cannot handle any more

17      reductions.

18             I thank the members for being here today, and

19      all the organizations who will speak.

20             I deeply appreciate the work you do on behalf

21      of the DDID community.

22             What I'm here to tell you is that you are the

23      true heroes.  And I'm proud to be an advocate for

24      you, and most importantly for those that you care

25      for.


 1             Thank you, Mr. Chairman.

 2             SENATOR MANNION:  Thank you,

 3      Senator Martucci, and I understand your concerns.

 4             I believe that today we are going to hit on

 5      the things that are truly the priorities here.  And

 6      I don't believe that we're looking at anything

 7      related to a whitewash.

 8             And with that, I will say that I'm looking

 9      forward to begin with our first panelist, which is

10      Commissioner Kastner.

11             Thank you for being here, Commissioner.

12             DR. THEODORE KASTNER:  Well, thank you.

13             Good afternoon, Senator/Chairman Mannion,

14      Ranking Member Martucci, and other distinguished

15      members of the Senate Committee on Disabilities.

16             I am Ted Kastner, Commissioner of the

17      New York State Office for People with Developmental

18      Disabilities.

19             Thank you for the opportunity to talk about

20      OPWDD's response to the COVID-19 public health

21      emergency.

22             From the beginning, OPWDD has been an

23      integral part of the state's groundbreaking response

24      to the COVID pandemic.

25             OPWDD's first positive case was reported on


 1      March 11, and our second on March 13, 2020.

 2             The scope of the challenges we would face hit

 3      home almost immediately, leaving no doubt that we

 4      were facing a widespread health crisis and needed to

 5      transition immediately from containment to

 6      mitigation strategies.

 7             OPWDD and its providers, in response to

 8      COVID, demonstrated no limits in our commitment,

 9      ingenuity, and flexibility.

10             Our Office of Emergency Management was

11      activated during the week of March 9th to coordinate

12      our case finding, tracking, data analytics,

13      PPE distribution, and other critical tasks on a

14      24/7 basis.

15             On March 13, OPWDD redeployed internal

16      affairs investigators to New York City to launch a

17      process that would be later recognized as contact

18      tracing and identification.  Nearly 100 of OPWDD's

19      internal affairs personnel were in the field.

20             Simultaneously, we identified the need to

21      understand the extent of the pandemic and guide our

22      deployment of resources.

23             By March 16, OPWDD's incident management

24      application was reprogrammed into an effective

25      COVID-reporting system.


 1             This was later expanded to include mandatory

 2      reporting of all infections and deaths of

 3      individuals through a 24-hour hotline, enabling

 4      real-time data to inform the immediate deployment of

 5      resources throughout the state.

 6             As the pandemic progressed, we were

 7      simultaneously operating multiple initiatives.

 8             We closely coordinated with the

 9      New York State Office of Emergency Management and

10      their control centers.

11             In early March 2020, OPWDD created an

12      internal process for tracking all of COVID-related

13      tasks and assignments.  The leadership met multiple

14      times per day to implement hundreds of internal

15      processes to improve our performance.

16             OPWDD's legal team promulgated guidance

17      documents, under the authority of the Governor's

18      executive orders, that mandated the reporting of

19      COVID testing results, and created requirements for

20      quarantine and isolation measures, and implemented

21      immediate containment measures.

22             OPWDD has since developed over 100 guidance

23      documents to assist providers in addressing the

24      public health emergency, and temporarily eliminated

25      or modified dozens of state and federal regulations


 1      or rules, granting providers the greatest

 2      flexibility possible while maintaining the health

 3      and safety of staff and clients.

 4             Since the very start, communication has been

 5      a primary goal.

 6             OPWDD sought to keep stakeholders as informed

 7      as possible despite the rapidly changing landscape,

 8      by bringing them together to assess and coordinate

 9      our needs, plans, and activities.

10             By the end of the second week of March 2020,

11      we were meeting with representatives of our

12      provider, family, and self-advocacy communities,

13      sometimes multiple times a day, in order to keep

14      lines of communication as open as possible.

15             Those meetings continue to this day, now

16      biweekly, so that we continue to gather feedback,

17      disseminate information regarding data related to

18      individual and staff infections and deaths, and to

19      respond directly to questions.

20             We've responded to thousands of requests for

21      information from people we support, their families,

22      elected officials, and the media.

23             In addition, OPWDD launched a new website in

24      April 2020 that is designed to be easier for

25      individuals and families to navigate, and began


 1      building an improved distribution list to help OPWDD

 2      better communicate with all stakeholders.

 3             The new website now contains an extensive

 4      section with information and plain-language

 5      resources for families, as well as guidance for

 6      providers.

 7             Finally, in April 2021, we began publishing

 8      COVID-19-related data on our website.  The data is

 9      updated daily.

10             While Governor Cuomo was coordinating with

11      other governors in our region, I was in contact with

12      other state leaders in the field of intellectual and

13      developmental disabilities, particularly in

14      New Jersey and Connecticut.

15             We recognized the need to close day programs

16      early on as they were a major source of the

17      potential spread of the virus.

18             So on March 18, 2020, we took the

19      unprecedented action of closing all certified day

20      programs, sending 55,000 individuals back to their

21      homes.

22             The following week, on March 24, 2020, we

23      reluctantly imposed restrictions on community

24      outings from and visitation to group homes in order

25      to help ensure the safety of the approximately


 1      35,000 vulnerable individuals living in certified

 2      group homes, as well as their families, and the tens

 3      of thousands of staff members working in those

 4      homes.

 5             Every effort has been made to separate

 6      individuals who were either infected or presumed to

 7      be infected with COVID from those who were not

 8      infected.

 9             When hospitalization is not medically

10      necessary, care in the home is provided as safely as

11      possible.

12             Residential providers must comply with

13      comprehensive guidance about how to clean and

14      disinfect, how to separate infected individuals from

15      those who are not infected, and what other types of

16      precautions are required by the CDC and the

17      New York State Department of Health.

18             Individuals with known or suspected COVID-19

19      are placed in single-person rooms with a dedicated

20      bathroom, or cohorted with others who are infected.

21             When necessary, an individual with COVID-19

22      can be moved to a separate cohorted setting, often

23      in a different location or home.

24             Beginning the week of March 23, 2020,

25      providers were authorized to establish temporary


 1      residences to accommodate quarantine and isolation

 2      needs for individuals who could not be safely served

 3      in the residence or who lived at home with their

 4      families.

 5             OPWDD coordinated with our residential

 6      providers, day-program providers, and families to

 7      allow as many as 100 vacant day-program sites to

 8      temporarily house individuals who may have presented

 9      a risk of infection.

10             In addition, we created an alternative

11      housing resource through our crisis respite

12      authority.

13             Providers were offered an opportunity to

14      create a short-term COVID-specific residential

15      capacity, using this flexibility, and we developed

16      more than 100 opportunities across the state that

17      could transition individuals if they were unable to

18      be safely supported in the hospital, their group

19      home, or their family home.

20             No individual who was symptomatic or infected

21      with COVID, or who was discharged from a hospital,

22      or voluntarily left their group home, was returned

23      to their home if it was not safe to do so.

24             And I just want to repeat that.

25             No individual who was symptomatic or infected


 1      with COVID, or who was discharged from a hospital,

 2      or voluntarily left their group home, was returned

 3      to their home if it was not safe to do so.

 4             In late March 2020, OPWDD's clinical and

 5      state operations teams revised our training

 6      materials, and provided opportunities for remote

 7      training of all State-operated and

 8      voluntary-operated staff.

 9             Based on the revised curriculum, we developed

10      an assessment tool to verify that staff engaged in

11      proper cleaning, hygiene, and infection-control

12      measures.

13             The new tool was shared with every voluntary

14      provider for their internal use.

15             OPWDD then used the tool to survey every one

16      of its 1,025 State-operated group homes by early

17      April 2020.

18             The tool was used by our field inspectors to

19      survey more than 600 residential settings operated

20      by nonprofit providers that we deemed to be high

21      risk due to the presence of COVID.

22             New York State was one of the first states to

23      apply for an Appendix K, the federal approval to

24      allow flexibility in the use of waver funds in

25      response to COVID.


 1             New York was also one of the first states to

 2      use retainer funds to financially support providers

 3      during program closures.

 4             Retainer funds were made available to

 5      day-program providers to retain personnel who would

 6      otherwise have been furloughed when day programs

 7      were closed.

 8             Providers were able to secure up to

 9      100 percent of the funding they had previously

10      earned through the provision of services.

11             This staff resource was then able to be

12      deployed by providers to address the needs within

13      residential settings affected by COVID, or to create

14      additional staffing capacity.

15             This was particularly important when agencies

16      were forced to quarantine staff who were exposed to

17      the virus and creating staff shortages.

18             The availability of retainer funds offered

19      voluntary providers the support they needed to

20      sustain revenue, and ensure that staffing levels

21      were appropriate to maintain the health and safety

22      of our individuals.

23             The federal government suspended

24      retainer-fund payments to New York State in mid-July

25      after 90 billing days.


 1             In August of 2020, OPWDD offered day-program

 2      providers additional billing flexibility.

 3             Day programs are now provided to bill for a

 4      full day of services, which previously lasted the

 5      minimum of 4.5 hours, after only 2 hours.

 6             Day programs are also permitted to bill for

 7      half day of services, which had previously lasted

 8      two hours, after only one hour.

 9             This flexibility will last until the end of

10      the public health emergency.

11             New York's emergency waver was also modified

12      to create alternatives to center-based day

13      programming.

14             Up to 35,000 individuals were afforded the

15      opportunity to receive habilitative services at

16      their residence through Community Habilitation-R.

17             Individuals living with their families were

18      also able to receive habilitative services and

19      respite using remote technologies.

20             We encouraged providers to expand capacity to

21      deliver day programs without walls.

22             We also temporarily suspended face-to-face

23      visits with care managers, and allowed CCOs to

24      remotely develop care plans.

25             OPWDD partnered with the New York State


 1      Department of Health to ensure that individuals

 2      living in certified residential settings, and their

 3      staff, were prioritized for the COVID-19

 4      vaccination.

 5             As of May 14, 2021, nearly 85 percent of our

 6      individuals in certified residential settings are

 7      either partially or completely vaccinated.

 8             In addition, 30.9 percent of staff working in

 9      certified settings have been partially or completely

10      vaccinated.

11             Individuals with intellectual and

12      developmental disabilities not residing in certified

13      residential settings, and their staff, became

14      eligible for vaccination in late February 2021.

15             At the present time, 35 percent of those

16      individuals are either partially or completely

17      vaccinated; in addition, 24.9 percent of staff

18      working in community settings have been partially or

19      completely vaccinated.

20             We are working with our stakeholders to

21      improve vaccination rates.

22             Despite our best efforts, COVID took a toll

23      on the individuals we serve, their families, and

24      staff.

25             As of May 17, 2021, out of 128,000 people


 1      supported by OPWDD, 10,633 people with developmental

 2      disabilities across the state have tested positive

 3      for COVID-19, including 7,127 individuals in

 4      certified residential settings.

 5             In addition, of the more than 100,000 staff

 6      supporting these individuals, 15,078 staff across

 7      the state have tested positive for COVID-19,

 8      including 11,481 staff working in certified

 9      residential settings.

10             It is with great sadness that we report that

11      668 people with developmental disabilities,

12      including 577 individuals residing in certified

13      residential settings across the state, have passed

14      away with a positive COVID-19 test.

15             However, as a result of high vaccination

16      rates among our individuals, rates of infection have

17      dramatically decreased across our entire system.

18             We are currently reporting only 10 to

19      20 individuals who are newly positive each week, and

20      mortality has significantly dropped.

21             Now with significantly decreased rates of

22      infection, we are using the opportunity to safely

23      restore and redesign services.

24             Day programs have been allowed to reopen

25      since July 2020, and are asked to submit a safety


 1      plan to OPWDD, and to post that plan on their

 2      website, prior to reopening.

 3             Visitation at group homes and community

 4      outings are now permitted for individuals in

 5      residential settings, but with certain restrictions

 6      and documentation in place.

 7             We are screening all individuals, all staff,

 8      and all visitors in settings every day.

 9             Last month we liberalized the use of

10      quarantine in group home settings.  Individuals who

11      are vaccinated will no longer be required to be

12      quarantined when they come in contact with staff or

13      individuals who are potentially infected.

14             We are also undertaking outreach efforts to

15      individuals, families, and providers through a

16      series of focus groups, small forums, and

17      discussions, to receive stakeholder input into what

18      the "new normal" should be, and how we can meet

19      service delivery needs in the future.

20             We also look forward to working with

21      legislators to hear your ideas on how we can best

22      meet our needs, going forward.

23             As we move forward, we remain diligent to

24      prevent future outbreaks of COVID-19 among the

25      people we support.


 1             Since the onset of the pandemic, we have

 2      developed a surveillance capacity which allows OPWDD

 3      to respond within 24 hours to any known occurrence

 4      of COVID.  We will build upon that resource as

 5      necessary.

 6             Our internal affairs staff continue to track

 7      cases and make additional case identifications.

 8             We deploy our licensing and certification

 9      staff to make unannounced visits to high-risk

10      settings.

11             Anticipating the impact of influenza last

12      year, we implemented a strategy to ensure

13      immunization of those individuals and families who

14      require flu shots.

15             In addition, this year we're prepared to

16      renew our COVID-related responses, including proceed

17      of a COVID-19 booster, if needed, as we move into a

18      potential COVID-19 season in the fall of 2021.

19             Before closing, I want to personally

20      recognize the heroic efforts taken by direct support

21      professionals who continuously put the needs of the

22      people they support above their own.

23             Working in a pandemic is frightening,

24      wondering if you will be infected, infect the

25      individuals you support, or bring the infection home


 1      to your own family.

 2             Direct support professionals and their

 3      supporting clinicians kept people alive and gave us

 4      hope during unprecedented times.

 5             We are immeasurably grateful for their

 6      commitment and dedication.

 7             I would also like to recognize the great work

 8      done by many of the leaders in our provider

 9      organizations who quickly devised creative solutions

10      to unprecedented problems.

11             Thank you for your time, advocacy for our

12      community, and the opportunity to submit testimony

13      on the impact of the COVID-19 pandemic on the

14      IDD community.

15             And I look forward to taking your questions.

16             SENATOR MANNION:  Thank you, Commissioner,

17      for that information, and for the outline of OPWDD's

18      COVID-19 response.

19             I should mention that we have been joined by

20      Senator Persaud.

21             The next phase of this will be that senators

22      may ask questions of the Commissioner for -- if they

23      are a member of the committee, for five minutes;

24      that includes question and answer.  And then

25      three minutes if they are not a member of the


 1      committee.

 2             And at that point, the Commissioner will be

 3      excused, and then we will move on to the panelists.

 4             So senators must raise their hands by using

 5      the "raise hand" feature on Zoom, and I'll call on

 6      you when it's your turn.

 7             Again, members of the committee would have --

 8      the Disabilities Committee would have five minutes,

 9      and any senators that are here that are not members

10      of the committee would be three.

11             So I'll start with myself, and then we'll

12      move on to Ranking Member Senator Martucci.

13             Commissioner, can you explain the differences

14      between a nursing home and a certified OPWDD

15      residence, and speak to the differences in the COVID

16      response for these facilities as they may be unique

17      from each other?

18             DR. THEODORE KASTNER:  Well, Senator, I'm not

19      responsible for the operation of nursing homes, and

20      I have no particular expertise in the operation of

21      nursing homes, their management.

22             I can generally say that nursing homes are

23      much larger than our OPWDD certified facilities.

24             I can't speak to how nursing homes were

25      engaged in the process of containment or mitigation


 1      around the COVID infection.

 2             I apologize, but that's really outside of the

 3      scope of both my professional experience and my role

 4      here at OPWDD.

 5             SENATOR MANNION:  And I think you may have

 6      alluded to, in some of your -- although not

 7      comparing them to the nursing homes, in your

 8      statement you had talked about the nature of these

 9      residences.

10             So along those lines, could you explain the

11      role that the Department of Health and stakeholders,

12      such as self-advocates or family advocates and

13      providers, had in either helping to create the

14      regulations and the guidance, or amending the

15      guidance, as it relates to these residential

16      facilities?

17             DR. THEODORE KASTNER:  Certainly.

18             Just going back to review the timeline:

19             New York State received approval from the

20      federal government to begin testing for COVID on

21      February 29 of 2020.

22             On March 1st of 2020, New York identified its

23      first positive case, and on March 2nd its second

24      positive case.

25             At the time, New York City had very, very


 1      limited testing capacity.

 2             I believe it was on March 13 that

 3      New York State actually achieved 1,000 tests per

 4      day, which was an important milestone.

 5             By January of 2021, the state was able to

 6      perform 325,000 tests per day.

 7             But back in early March it was extremely

 8      difficult to get our hands around the extent of the

 9      infection.

10             You may recall that, on March 10, 2020,

11      New York State implemented a containment zone, one

12      of the first containment zones in the country,

13      around the city of New Rochelle in an effort to

14      contain what was then believed to be a localized

15      infection.

16             Our first case occurred the next day,

17      March 11, and the second case was March 13th.

18             March 13th was really a big day for us.  We

19      had a case that was confirmed in the morning, a case

20      that was confirmed around noon, and by the afternoon

21      a third case.

22             We were concerned at that point that

23      individuals who were infected in group home settings

24      were using transportation resources, whether they

25      were public transportation or medical


 1      transportation, to go to a day program where

 2      200 individuals were working.  And that after

 3      leaving those day programs, they went back to dozens

 4      of homes that were supported by up to 12 agencies

 5      across Brooklyn and Queens.

 6             We met with our stakeholders daily, and

 7      through that weekend had numerous phone calls and

 8      meetings multiple times per day, to talk about

 9      moving quickly from containment to mitigation, and

10      the need to close day programs because they appeared

11      to be the primary vector for transmission.

12             We agreed with our providers that that was

13      the prudent thing to do.

14             At the time, they asked us for a couple of

15      days to alert their stakeholders that this would be

16      coming.

17             We settled on Wednesday, March 18th, as the

18      day we would close our day programs.

19             That was an extremely difficult and bold move

20      on our part.

21             We severed the relationship between day

22      programs and work for 55,000 individuals, but we

23      felt that was the prudent thing to do.

24             A week later, on the 24th, as we continued

25      to be engaged with our stakeholders, we limited


 1      visitation to certified residential facilities, and

 2      we limited outings from those centers.

 3             And it was simultaneous with those two steps

 4      that we began looking at creating alternative

 5      residential capacity, which I've described, and

 6      trying to stabilize not just our residential

 7      providers, but all of our families and individuals,

 8      to ensure that parents who had children living at

 9      home who were positive could get the support that

10      they needed, particularly if they themselves were

11      ill with COVID and couldn't care for their loved

12      ones.

13             So we had a rapidly developing process, where

14      we took what we believed to be prudent but rather

15      extraordinary measures to protect our individuals.

16      And by "protection" I mean to prevent transmission.

17             That was the key of all of our effort:  If we

18      could stop transmission, we could save lives and

19      keep people healthy.

20             SENATOR MANNION:  Thank you, Commissioner.

21             I may have a couple questions on the backside

22      of this, but in -- I want to make sure that we move

23      on to Senator Martucci for five minutes.  And then

24      if any other senators have questions, please use the

25      "raise hand" feature.


 1             Senator Martucci.

 2             SENATOR MARTUCCI:  Thank you, Chairman.

 3             Hello, Dr. Kastner.

 4             So maybe I'm -- I'm just starting maybe with

 5      my broadest question.

 6             You know, from your perspective, why were

 7      infection rates and death rates in your facilities

 8      during the height of the pandemic so much higher

 9      than the wider population?

10             DR. THEODORE KASTNER:  Well, I think, in

11      general, there's two reasons that morbidity and

12      mortality rates would be higher among people with

13      intellectual and developmental disabilities.

14             The first is, our individuals have higher

15      rates of comorbidities, medical conditions, that

16      lead to higher rates of mortality.

17             And they're the same as every other group of

18      individuals; heart disease, pulmonary disease,

19      cancer, diabetes, hypertension.

20             All of those medical conditions increase the

21      risk of having a poor outcome or dying after

22      infection.  And our individuals, particularly those

23      in certified settings, have higher rates of those

24      comorbidities.

25             The second is that congregate care setting,


 1      by their very nature, have higher rates of

 2      transmission because there are more people moving

 3      through them.

 4             In a family's home, the only people moving

 5      through are the family members; however, in a

 6      congregate setting like a group home, staff are

 7      moving through, and there are more staff than family

 8      members.

 9             So everyone's acknowledged that congregate

10      care settings have higher rates of mortality and

11      morbidity.

12             We personally don't think that it's a

13      reasonable comparison to look at the general

14      population and our high-risk settings, our IRAs.

15             A more useful comparison would be the general

16      population of the state of New York against the

17      general population of people with IDD.

18             And we have been able to document that the

19      rate of transmission to people in the IDD system is

20      lower than the rate of transmission for the

21      New York State general population.

22             We think that's a really, really important

23      benchmark, because it validates all of the work that

24      thousands and thousands of people did to prevent

25      transmission.


 1             The data shows that individuals with IDD

 2      served in our system were safer and had a lower risk

 3      than the general population of the state of

 4      New York.

 5             And I'll walk you through the data if you

 6      would like.

 7             SENATOR MARTUCCI:  No.  Thank you, Doctor.

 8             I mean, look, unfortunately, almost half of

 9      my time is gone, so I'm going to kind of ask this

10      next question as a combination so that you have the

11      opportunity to answer.

12             So you know that I have been very critical of

13      that April 10th order, an order that's still in

14      place today.

15             The Chairman alluded before to the

16      differences between a nursing home setting and the

17      settings that we're discussing here.

18             So I guess my question is simple:

19             This order is eerily similar to the famous

20      March 25th order for nursing homes.  The language is

21      almost identical.

22             Could you give us a little perspective in

23      terms of, how this order came to pass, and, you

24      know, who you received this guidance from to craft

25      this order, and sort of, most importantly in my


 1      mind, why this is still in place today, given all we

 2      know about how dangerous the nursing home order was?

 3             DR. THEODORE KASTNER:  So March 23, 2020, the

 4      CDC produced guidance that was disseminated to

 5      everyone, around the discharge criteria and the

 6      discharge process of individuals infected with

 7      COVID.

 8             We used that as a starting point in

 9      developing the guidance that we then published on

10      April 10th of 2020.

11             At the same time, we recognized that

12      discharging people from the hospital, who had been

13      hospitalized for COVID, would be a challenge.

14             We created an alternative residential

15      capacity to support individuals who could not safely

16      be returned to their group home.

17             So the guidance that we issued gave

18      providers --

19             I'm looking at it right now.  I think it's

20      important to look at the document.

21             -- but gave providers the flexibility to

22      determine whether or not they could safely return an

23      individual to their homes.

24             There was no mandate, no requirement, that

25      they be readmitted to a home.


 1             The res -- I'm quoting:  The residents who

 2      are symptomatic should only be discharged to a

 3      certified residence if there are clinical staff

 4      available who are capable of attending to the

 5      medical needs of symptomatic residents pursuant to

 6      the hospital discharge instruction.

 7             There was an out for residential providers.

 8             They were not forced to accept individuals

 9      back to their homes.

10             We created an alternative residential

11      capacity to support those agencies and those

12      individuals.

13             So I'm just reading from the document.

14             I think we created a flexible document that

15      was able to address the needs of individuals and the

16      provider agencies that supported them.

17             SENATOR MANNION:  Thank you, Commissioner.

18             I am going to move on to Senator Persaud for

19      five minutes.

20             But I would just like to mention I have some

21      follow-up questions, and I think Senator Martucci

22      may as well.

23             So we're going to have -- you know, if

24      everybody's in agreement, and I think we would be,

25      we'll go through, you know, another -- another


 1      round.

 2             Senator Persaud, you have five minutes.

 3             Thank you.

 4             SENATOR PERSAUD:  Thank you, Chair.

 5             Commissioner, it's great to see you.  Thank

 6      you for everything that you're doing.

 7             I just have a couple of questions that I'd

 8      like answered.

 9             During the height of the pandemic, the DSPs

10      at the residences were required to remain in place

11      if there was someone there who contracted COVID.

12             Could you tell us how you handled that,

13      because they were required to do so.

14             And in most cases -- in many cases --

15      I shouldn't say most -- in many cases, they were not

16      compensated for the time, or given supplemental

17      payments for the time, that they were required to

18      stay there.

19             DR. THEODORE KASTNER:  Senator, I have to

20      apologize, but I am not aware that we published

21      guidance requiring staff remain on duty if they were

22      positive.

23             That may have been a determination made by

24      individual provider agencies.

25             But I'm not aware-- and I appreciate being


 1      corrected if I'm wrong -- but I'm not aware that

 2      that was a requirement that we imposed on provider

 3      agencies.

 4             As far as compensation for staff, we have no

 5      role in directing the compensation to DSPs by the

 6      agencies that employ them.  Those are individual

 7      conditions that are negotiated within each agency.

 8             SENATOR PERSAUD:  Okay, so I can be clear:

 9             The individual contracted COVID and they were

10      homebound.  The staff was required to remain there.

11             So I had staff who were required to stay in

12      place for two weeks at a time, because an individual

13      in the residence had contracted COVID and was in the

14      facility.  And so they were required to remain there

15      to take care of that resident, but they weren't

16      compensated for (simultaneous talking;

17      indiscernible) --

18             DR. THEODORE KASTNER:  I don't disagree with

19      your premise that staff were required to spend up to

20      two weeks in a home if they were positive.

21             But I would say that that did not occur as a

22      result of a directive or guidance or policy of

23      OPWDD.

24             SENATOR PERSAUD:  Okay.

25             DR. THEODORE KASTNER:  The agencies created


 1      their own policies around how they addressed their

 2      staffing needs.

 3             And I'll take your word for it that this

 4      practice did occur, but it did not occur -- I don't

 5      believe as a result of policy or guidance or

 6      regulation promulgated by OPWDD.

 7             SENATOR PERSAUD:  Thank you.

 8             And in the setting that you have, what -- are

 9      you offering any kinds of incentives to staff to

10      become vaccinated?

11             We see the incentives are being offered all

12      across the board.

13             And in this vulnerable population, we want as

14      many staff as possible, as well as the residents, to

15      be vaccinated.

16             Are you offering the staff any kinds of

17      incentives?

18             DR. THEODORE KASTNER:  We agree, Senator,

19      that it is really important that as many staff as

20      possible, and as many individuals as possible, be

21      immunized against COVID.

22             We, as you've noted, and others have noted,

23      have access to funding through the American Recovery

24      Plan related to the enhanced federal matching of

25      funds.


 1             We are currently conducting public forums

 2      and -- you know, five public forums across the

 3      entire state, and another 35 or so meetings with

 4      various constituency groups, to solicit their

 5      thoughts about how we should use those enhanced

 6      federal funds to support our system.

 7             I don't think it's a secret, we have heard

 8      recommendations similar to what you are

 9      recommending.  And we will be looking at if it's

10      possible for us to use enhanced FMAP funding to

11      incentivize DSPs to become vaccinated, or to reward

12      DSPs who have already been vaccinated.

13             So it's something we're looking at right now.

14             But I don't want to get ahead of ourselves

15      because we haven't completed the process of

16      soliciting public input.

17             SENATOR PERSAUD:  Okay.  Well, thank you for

18      that.

19             My final question:  Am I right when you said

20      10 to 20 positive cases per week you are still

21      seeing?

22             DR. THEODORE KASTNER:  Yes.  Out of about

23      128,000 individuals, we are seeing positives.

24             SENATOR PERSAUD:  Are your cases concentrated

25      in one particular area of the state, or is it just


 1      12 to 20 across the entire state?

 2             DR. THEODORE KASTNER:  It's across the entire

 3      state.

 4             I will say that the focus has moved away from

 5      our residential programs and into the larger cohort

 6      of individuals who are living in the community.

 7             This reflects more local conditions.

 8             The high rate of vaccination in residential

 9      settings, about 85 percent as of two weeks ago, has

10      probably granted immunity to the larger number of

11      individuals living there.

12             So now it's not so much focused on

13      residential; it's more community spread.

14             We're going back to, you know, where we

15      started back in February and early March.

16             SENATOR PERSAUD:  Thank you, Commissioner.

17             DR. THEODORE KASTNER:  Thank you.

18             SENATOR MANNION:  Thank you, Senator Persaud;

19      and thank you, Commissioner, for those answers.

20             Quick questions here, for myself.

21             You did mention that the rate of transmission

22      was lower than in the general population.  And you

23      had -- it seems like you have those numbers.

24             Can you please share the rate of transmission

25      if you have them?


 1             DR. THEODORE KASTNER:  Oh, sure.

 2             In the testimony I offered, I said that

 3      10,633 of the 128,000 individuals we support have

 4      tested positive for COVID.  That works out to about

 5      8.31 percent of all the individuals with IDD that we

 6      support.

 7             For the general population, data is widely

 8      available.

 9             About 1.7 million New Yorkers out of

10      19.45 million New Yorkers have tested positive for

11      COVID.  That's about 8.74 percent.

12             In terms of a difference, our rate is about

13      .4 percent lower, and that's about a 5 percent

14      improvement in the rate of transmission for the

15      general population.

16             And I think that's a really important metric

17      because it validates the work and the commitment and

18      the sacrifice made by thousands and thousands of

19      people across the state.

20             Everyone who has worked to support

21      individuals during the COVID pandemic need to know

22      that it worked, it mattered, it was effective, and

23      it saved lives.

24             That's really the takeaway for people.

25             Everyone should feel that they made a


 1      difference in, collectively, the work that we

 2      produced.

 3             SENATOR MANNION:  Thank you.

 4             From one of your statements, and then, also,

 5      your original statement, and then a response to a

 6      question, you used the phrasing that "no one was

 7      returned to a residential facility if it was not

 8      safe to do so."

 9             By that do you mean that they were

10      COVID-negative and/or asymptomatic?

11             Because I know you had used some of those

12      terms.

13             DR. THEODORE KASTNER:  No, by "safely

14      return," what I mean is, what I refer to in the

15      guidance document, that, basically, "discharged only

16      to a certified residence if there are clinical staff

17      available who are capable of attending to the

18      medical needs of symptomatic residents pursuant to

19      hospital discharge instructions."

20             No agency should have taken anyone back if

21      they couldn't safely accommodate their needs in the

22      home.

23             And if they couldn't accommodate their needs

24      in the home, we had two alternative residential

25      options to support them and those individuals.


 1             That's the best we could do.

 2             I think we were very forward-looking in

 3      building that capacity, having it in place and

 4      available, before we published the advisory on

 5      hospital discharges and admissions to certified

 6      residential facilities on April 10, 2020.

 7             SENATOR MANNION:  Okay.  Thank you.

 8             I will say, and I meant to mention this as my

 9      second round of time came, that, anecdotally, I do

10      support exactly what Senator Persaud had said, which

11      is I did hear of situations, as she listed,

12      regarding COVID-positive workforce and having to

13      remain.

14             You had mentioned, of course, tragically,

15      that we lost people within the IDD community to

16      this.

17             I don't know if I missed this, so I do

18      apologize.

19             You had referenced the number of cases within

20      the workforce.

21             Do we know of any deaths, or the number of

22      deaths, of individuals who are a part of this

23      workforce that died and were positive COVID-19 at

24      the time?

25             DR. THEODORE KASTNER:  Well, it's certain


 1      that we've lost individuals from the workforce as a

 2      result of COVID infection.

 3             I don't have that number specifically.

 4             SENATOR MANNION:  Thank you.

 5             One last thing here.

 6             So as far as transmission within the group

 7      homes, and it sounded like, from your answer, you

 8      know, we may not have rates of actual transmission

 9      that occurred with those homes, but do we believe

10      that transmission was occurring in those homes?

11             DR. THEODORE KASTNER:  It certainly was

12      occurring, and we actually have data, and

13      I presented that --

14             SENATOR MANNION:  Okay.

15             DR. THEODORE KASTNER:  -- the number of

16      individuals who were living in homes.  That's the

17      numerator.  And the denominator is about

18      35,000 individuals.

19             So we can calculate rates for that subgroup,

20      but we also need to recognize that that's a

21      particularly high-risk group in terms of

22      transmission risk.

23             And it's really -- in terms of our evaluating

24      our performance, it really isn't helpful to us look

25      at transmission rates in group homes and compare it


 1      to transmission rates for the general population.

 2             We want to look for apples-to-apples

 3      comparisons, general population in New York State,

 4      general population IDD, or high-risk congregate care

 5      settings for OPWDD and other high-risk congregate

 6      care settings.

 7             Those comparisons are more helpful to us in

 8      understanding the performance of our collective

 9      effort.

10             SENATOR MANNION:  Okay.  Thank you.

11             I appreciate it, Commissioner.

12             Five minutes for Senator Martucci.

13             SENATOR MARTUCCI:  Thank you, Chairman.

14             So, Commissioner, I want to just circle back

15      to the last thing that you and I were discussing in

16      the first round of questions.

17             And I'm holding a copy of the order here.

18      And I understand that you were explaining to us that

19      the order has some flexibility.

20             And so I want to read just a paragraph from

21      the first page of the order, where it says, quote:

22             No individual shall be denied readmission or

23      admission to a certified residential facility based

24      solely on a confirmed or suspected diagnosis of

25      COVID-19.  Additionally, providers of certified


 1      residential facilities are prohibited from requiring

 2      a hospitalized individual who is determined

 3      medically stable to be tested for COVID-19 prior to

 4      admission or readmission.

 5             So, look, I'm no attorney, but when we're

 6      talking about words like "shall" and "prohibited" in

 7      this order, how would a certified residential

 8      facility see any flexibility in an order that's

 9      worded in this manner?

10             DR. THEODORE KASTNER:  So I'll [inaudible]

11      the first sentence that you read is an

12      antidiscrimination mandate.

13             We would not allow residential providers to

14      discriminate against individuals based solely on the

15      presence or suspected presence of COVID.

16             We use that phrase for every criteria against

17      which we want to prohibit discrimination.

18             Whether it's the presence of HIV, race,

19      ethnicity, culture, religion, sexual orientation, we

20      do not tolerate discrimination.  We don't want to

21      tolerate discrimination against people who might be

22      suspected of having COVID.

23             Now, you skipped a sentence.

24             The sentence you skipped says that "Any

25      denial of admission or readmission must be based on


 1      the residential provider's inability to provide the

 2      level of care required by the prospective individual

 3      pursuant to the hospital's discharge instructions,

 4      and based on the residential provider's current

 5      certification."

 6             We gave residential providers an out.

 7             They simply had to say "We can't do this.  We

 8      don't have the staff.  We don't have the capacity,"

 9      and we would work with them to find an alternative

10      residential setting.

11             Now, the sentence you did read following

12      that, about certified residential providers being

13      prohibited from requiring hospitals to test people

14      for COVID is an issue around who's directing the

15      care in the hospital.

16             Hospitals develop treatment plans.  They

17      manage appropriately.

18             When someone is ready to be discharged, they

19      make that recommendation.

20             That does not prohibit a residential provider

21      from obtaining a COVID test for an individual who is

22      under their care.

23             But residential providers can't direct

24      hospital care, and they can't use that as a reason

25      not to accept someone back to the residence.


 1             But they can come back and tell us, We can't

 2      support this individual because we don't have enough

 3      staff, we don't have the capacity.

 4             And we worked with residential providers to

 5      create alternative capacity, and to have individuals

 6      be supported outside of the certified homes that

 7      didn't have the staff or the resources.

 8             There is not a single provider who would say

 9      that we told them they had to take someone back,

10      because we never told anyone they had to take

11      someone back if they couldn't do it.

12             We told them, we're here to help you.  Here

13      are other resources you can rely upon.

14             SENATOR MARTUCCI:  Okay.  Thank you,

15      Dr. Kastner.

16             I mean, look, here's what I would tell you:

17             You know, this certainly sounds like a

18      requirement to me, and I think it sounds like a

19      requirement to a lot of people, based on the way it

20      was worded.

21             My last question is this, because I see I've

22      got a little less than two minutes left, is with

23      respect to the temporary residences that you were

24      referring to that were set up, about 100 of them, or

25      approximately 100 of them, around the state.


 1             I guess my question is -- and I've heard from

 2      some providers who were part of setting up some of

 3      the residences -- in terms of who was sent to these

 4      residences, was that something that was directed by

 5      your department, or providers were setting up

 6      residences -- these temporary residences for their

 7      own folks who could not be cared for in those

 8      settings?

 9             DR. THEODORE KASTNER:  There were two

10      separate residential opportunities that were

11      created.

12             The first, we allowed providers who operated

13      day programs to convert those vacant day program

14      sites to create alternative housing.

15             And in many instances, residential providers

16      were also operating day programs, and they could

17      direct their individuals to those alternative

18      residential settings.

19             We didn't have a lot of oversight in that.

20      We wanted to give them flexibility and the ability

21      to respond in a quick and nimble way.

22             The second option that we created was to

23      support our residential providers, but also to

24      support families who didn't have the capacity to

25      care for either a loved one who was acutely ill, or


 1      whose parents themselves were infected and couldn't

 2      manage the care of their loved ones.

 3             So we created about 100 -- 120 beds, using

 4      the temporary emergency respite authority that we

 5      had, and those we directed people into.

 6             But I'd have to say, neither one of those

 7      capacities was ever exceeded.  Demand never exceeded

 8      our capacity.

 9             We always had the ability to support people

10      in either one of those residential alternatives

11      throughout the entire pandemic.

12             We had capacity we built, and we didn't use

13      it, and that's great; no problem with that.

14             We wanted to make sure that we could serve

15      everyone that we needed.

16             And, Senator, just to -- I know we're going

17      to run out of time -- I'm happy to meet with you and

18      talk to you more about this.  I'm really passionate

19      about it.

20             I want all of our stakeholders to feel that

21      they did what they could do, and it made a

22      difference.

23             And I think I can convince you that we did

24      the very best that we could.

25             So I'm happy to meet with you at some point


 1      later and continue the discussion.

 2             SENATOR MARTUCCI:  Well, Dr. Kastner,

 3      I certainly thank you for your time today, and

 4      I thank you for your willingness to do that.

 5             And I will certainly take you up on that

 6      offer.

 7             Thank you, Chairman.

 8             DR. THEODORE KASTNER:  Thank you.

 9             SENATOR MANNION:  Thank you,

10      Senator Martucci.

11             Thank you, Commissioner, for participating

12      today.  And we look forward, of course, to

13      continuing these conversations to improve service

14      delivery in the state of New York.

15             We have a long list of panelists, as we tried

16      to be as inclusive as possible.

17             So thank you for joining us today,

18      Commissioner.  We appreciate that.

19             I would like to begin the panel-discussion

20      portion of this roundtable.

21             Panelists will have two minutes each to

22      deliver their remarks.

23             Senators will have the opportunity to ask

24      panelists questions for two minutes per panel after

25      all panelists have made their statements.


 1             I'll call on members who have raised their

 2      hand using the "raise hand" function in Zoom.

 3             Senators, please direct your questions

 4      directly to individual panel members if you can.

 5             Our first panamel -- panel -- excuse me -- is

 6      reporting and transparency.

 7             I'd like to introduce Marco Damiani from AHRC

 8      New York City.

 9             MARCO DAMIANI:  Thank you, Chairman Mannion

10      and Ranking Member Martucci, for the opportunity to

11      provide remarks today.

12             I'm Marco Damiani, CEO of AHRC New York City.

13      We are the largest agency providing OPWDD-funded

14      services in New York State.

15             In the early spring of 2020, a number of

16      metro New York provider agencies formed a data

17      collaborative to track the impact of the

18      coronavirus.

19             At that time, the group served 3800 people

20      with IDD in residential settings in New York City,

21      which represents over 26 percent of all the

22      certified beds in New York City.

23             Our data indicated that infection,

24      hospitalization, and fatality rates for people with

25      IDD greatly exceeded the rate of infection that was


 1      being experienced by the general New York City

 2      population.

 3             The rate of infection was about five times

 4      the general New York City rate, the rate of

 5      hospitalizations was almost three times that of

 6      New York City, and the fatality rate was two times

 7      the rate in New York City.

 8             On April 20, 2020, a research brief by

 9      Dalton Stevens and Scott Landes from

10      Syracuse University approximated those trends.

11             We were extremely alarmed by these rapidly

12      emerging trends.

13             The data collaborative was quickly expanded

14      upstate, and then statewide, folded into an

15      unprecedented effort by the New York Disability

16      Advocates.

17             These data provided essential and current

18      information on COVID-19 within and across regions,

19      as well as data that showed potential future trends

20      in infections, hospitalizations, and deaths.

21             It enabled proactive provider response

22      decisions for organizations who had access to the

23      data.

24             These data proved invaluable and, no doubt,

25      enabled people with IDD and staff to be designated


 1      as Priority 1A for vaccinations.

 2             Reports from others have mentioned a lack of

 3      transparency in the release of infection and

 4      hospitalization and fatality data.

 5             OPWDD has given numerous verbal reports to

 6      provider associations, which has been very useful,

 7      but not as powerful as the public release of robust

 8      data.

 9             This information would have been particularly

10      helpful in seeing the need for PPE and educational

11      response needs earlier on.

12             Going forward, a move toward more readily

13      available key datasets during urgent or emergent

14      conditions would be very useful for all

15      stakeholders.

16             The upcoming 507 plan process should include

17      key data-sharing commitments that can better inform

18      system transformation characteristics and targeted

19      resources to meet future needs and flexibility.

20             We need even stronger partnerships across

21      providers, families, self-advocates, and government.

22             We want to learn from what we have

23      collectively experienced.

24             Thank you very much for your time.

25             SENATOR MANNION:  Thank you, Mr. Damiani.


 1             We're moving on, next, I'd like to introduce

 2      Alyssa Galea from Disability Rights New York.

 3             ALYSSA GALEA, ESQ.:  Thank you,

 4      Chairman Mannion and Ranking Member Martucci, for

 5      the opportunity to speak today.

 6             DRNY, along with the New York Civil Liberties

 7      Union and New York Lawyers for the Public Interest,

 8      conducted a seven-month-long investigation,

 9      examining the impact of COVID-19 on people with IDD

10      living in group homes.

11             Many of the issues we identified are on the

12      agenda today, so we're very encouraged that this

13      conversation is being held.

14             But one of the biggest obstacles we

15      encountered in conducting our investigation was a

16      lack of transparency and difficulty obtaining data.

17             We know that OPWDD has collected data on

18      infections and deaths amongst the staff and

19      residents of group homes from the beginning, but did

20      not share it publicly.

21             The requests made under the Freedom of

22      Information Law in the year 2020 were subject to

23      extensive delays.

24             OPWDD had telephone calls with certain

25      stakeholders, but they were exclusive at invitation


 1      only.

 2             And as the protection and advocacy system at

 3      DRNY, we were able to get some raw data about

 4      resident fatalities from the Justice Center, but

 5      this was by no means an option available to the

 6      general public.

 7             The lack of transparency shuts family as

 8      policymakers, provider agencies, and the scientific

 9      community out of critical conversations about

10      reducing exposure and continuing outbreaks and

11      preventing deaths.

12             OPWDD only started sharing the infection and

13      fatality data publicly in late April of 2021.

14             And while this is a positive step, there's

15      definitely a limitation on the accountability and

16      ability to make timely changes to policies and

17      practices when data is being shared so far after the

18      fact.

19             What is being released now cannot change the

20      impacts of the decisions that were made last year,

21      but it can and should be used to shape future

22      policies for future public health emergencies.

23             So we feel that it is critical, moving

24      forward, that reporting requirements are put in

25      place to ensure transparency and accountability


 1      during public health emergencies, as well as that

 2      data reporting is timely, and includes comprehensive

 3      demographic information, to ensure that the

 4      practical and equitable impacts of emergency

 5      responses can be monitored as they occur and

 6      adjusted appropriately.

 7             Thank you.

 8             SENATOR MANNION:  Thank you, Ms. Galea.

 9             Next I'd like to introduce Erik Geyser from

10      Arc of New York.

11             ERIK GEYSER:  (Microphone is muted.)

12             SENATOR MANNION:  Mr. Geyser -- yes.

13             ERIK GEYSER:  Sorry.

14             Thank you, Chairman Mannion and Ranking

15      Member Martucci, and all the other senators on the

16      committee.

17             I'm Erik Geyser, CEO of the Arc New York, the

18      largest voluntary provider of services for people

19      with IDD in the state.

20             At the outset of the pandemic, our

21      organization recognized the crucial need for

22      real-time data to help us understand the impact of

23      COVID-19 on individuals with IDD and inform our

24      response.

25             We advocated with the State to address this


 1      need.

 2             While we did receive cooperation from OPWDD,

 3      the State did not initially have the capacity to

 4      collect the necessary data in their existing

 5      platform.

 6             They had to identify and build a platform on

 7      to collect the data.

 8             As such, voluntary providers took the

 9      initiative to meet the critical need independently.

10             The state of emergency was declared on

11      March 7th, and within weeks the Arc New York was

12      collecting weekly data to assess the impact of the

13      pandemic on the people we support.

14             We quickly collaborated with NYDA to expand

15      the reach of that data collection to hundreds of

16      voluntary providers, including every chapter of the

17      Arc New York.

18             We partnered with Syracuse University on a

19      yearlong project, which included comprehensive data

20      on infections, hospitalizations, deaths, recoveries,

21      quarantines, and vaccinations.

22             Syracuse University published their first

23      study in June, which found that individuals with IDD

24      in residential programs were four times as likely to

25      contract COVID-19, and two times likely to die of


 1      infection.

 2             The information shaped our pandemic response

 3      and supported our advocacy efforts.

 4             The data collected by New York's voluntary

 5      providers helped secure vaccination priority for

 6      New Yorkers with IDD, and has been cited to drive

 7      policy change at the federal level.

 8             We know data is vital in developing informed

 9      and effective public policy.

10             In the future, these efforts would be more

11      streamlined, comprehensive, and impactful if they

12      were conducted by the State and shared in real time

13      with providers.

14             In the event of a future crisis, the State

15      must have the resources and infrastructure to

16      immediately undertake field-wide data collection and

17      sharing.

18             Thank you for allowing me to share my

19      comments today.

20             SENATOR MANNION:  Thank you, Mr. Geyser.

21             I'm going to break my own rule here and just

22      open up my questions to anyone here.

23             So I certainly hear loud and clear about the

24      need for data in documents and it being a timely

25      manner.


 1             I'm going to go a little bit off of that and

 2      ask:

 3             As different organizations were obtaining

 4      this data, were -- did anyone have the ability to

 5      engage in consultations on the guidelines developed

 6      by the Department of Health or procedures by OPWDD

 7      before the enactment of those guidelines, or after

 8      those guidelines were in place, to express that some

 9      improvements or enhancements might be made to those?

10             So I know it was a little long-winded, but

11      what I will say basically is:  Were there -- was

12      there a consultation with either the Department of

13      Health or OPWDD regarding guidelines as we got

14      through this crisis?

15             Anyone can answer.

16             Thank you.

17             ERIK GEYSER:  Mr. Chairman, maybe I'll take

18      the question, and I believe you're referencing the

19      discharge guidance, if I'm not mistaken.

20             Is that correct?

21             SENATOR MANNION:  That could be.

22             You know, we're talking about a lot of things

23      today, but it could have been in regard to that, or

24      visitations, or whatever.

25             Any part of the guidelines that were in


 1      place.

 2             But, yes, thank you.

 3             ERIK GEYSER:  Yep.

 4             My recollection is that we didn't consult

 5      with OPWDD prior to the release of that information.

 6             But I should say that OPWDD regularly had

 7      stakeholder meetings and consultation, and received

 8      feedback from providers post the release of that

 9      guidance.

10             SENATOR MANNION:  Thank you.

11             If any of the other panelists could provide

12      context on that, that would be appreciated.

13             MARCO DAMIANI:  I would agree with what Erik

14      just said.

15             As we're a member of the Arc, and we were

16      routinely given feedback and opportunity to give

17      information to the Arc about what we were

18      experiencing, and also receiving it.

19             We were not engaged prior to any guidance

20      coming out, but had input when guidance did, in

21      fact, come out.

22             ALYSSA GALEA, ESQ.:  And I can say, on behalf

23      of Disability Rights New York, we were not consulted

24      before the issuance of any guidance or included in

25      those stakeholder conversations.


 1             SENATOR MANNION:  Thank you.  I appreciate

 2      that.

 3             Senator Martucci.

 4             SENATOR MARTUCCI:  Thanks, Chairman.

 5             So I think, really, mine is more -- less of a

 6      question and more of just a highlight.

 7             You know, certainly what I want to say to all

 8      of you is I understand your frustration with respect

 9      to a lack of information.

10             Even as a legislator it was impossible for me

11      to get information, you know, when I had reached out

12      to the department.

13             I had sent the department a letter back in

14      March, asking for some information, and only parts

15      of that information came back.

16             So I certainly hear loud and clear your

17      charge for us to work cooperatively as a legislature

18      to figure out ways that we can help you get that

19      data as we move forward, as it's certainly useful.

20             But I think, again, the lack of transparency

21      is certainly worth highlighting.

22             And the other thing I would call out is,

23      unfortunately, the department does have an abysmal

24      history, as I've heard, about making information

25      available via FOIL.


 1             And things shouldn't be that way.  It's not

 2      the way government should work, and particularly,

 3      when you're using this data to inform your decisions

 4      in terms of keeping people who you're entrusted with

 5      safe.

 6             So I want you to know that your comments are

 7      certainly not lost on me.

 8             And I look forward to working with the

 9      Chairman and others on ways that we can make this a

10      whole lot easier for you, moving forward.

11             ERIK GEYSER:  Thank you.

12             MARCO DAMIANI:  Thank you.

13             SENATOR MANNION:  Thank you, Senator.

14             One last comment, and I of course appreciate

15      the panelists participating today.

16             That's one comment.

17             I appreciate your clear statement that the

18      data needed to be provided in document form and

19      needed to be timely.

20             The only thing I would add to that is that we

21      have had a bill pass the Senate and the Assembly, it

22      was my bill, that the OPWDD provide a detailed

23      report, including that data.

24             Now that is as we, hopefully, are approaching

25      the end here of what we're going through, and we


 1      understand the importance of that timely

 2      information.

 3             Let's hope we do not have another public

 4      health crisis, but we know that the data needs to be

 5      rapid.  The State is probably best suited to provide

 6      that data, and should be provided to providers in

 7      writing and in a timely manner.

 8             So I do appreciate everyone's participation

 9      today from the panelists.

10             We have, again, a long list of panelists

11      participating.

12             I thank you all for what you have done, and

13      for the research you have done, to make sure that

14      families and individuals know that there are people

15      out there that are fighting for them, that have

16      their best interests at heart.

17             And I appreciate everything that all of you

18      did throughout this very challenging time.

19             So thank you for joining today.

20             Next panel is -- will be program flexibility

21      and new models of care.

22             Our first panelist is BJ Stasio from

23      Self-Advocacy Association of New York State.

24             BJ STASIO:  Hello, Senator, and thank you

25      members of the committee, for having me today.


 1             I'm honored to be here.

 2             The comments from SAANY are as follows:

 3             During COVID-19 it became necessary to offer

 4      alternative services, such as Com Hab remotely, and

 5      in people's homes, instead of day programs.

 6             It is important to note that this flexibility

 7      expanded choice, which is positive, and people liked

 8      this option; however, it is also important to note

 9      that no service works for all, or will be chosen by

10      everyone.

11             So while SAANY wants to see these flexible

12      services continue, they must not be imposed on

13      someone as an alternative to services they may have

14      preferred prior to COVID-19.

15             People must be able to choose what services

16      they would like, whether it is traditional services

17      or the new options that become available during

18      COVID-19.

19             One important consideration is that the

20      remote services, particularly those offered online,

21      can afford people new opportunities.

22             Not everyone has access to equipment and

23      Internet.

24             Self-advocates within residential services

25      should all have access to Internet services and


 1      equipment, not simply to receive service options,

 2      but also to explore the world; make connections with

 3      their friends, family, and broader communities.

 4             And I would like to take my last 20 seconds

 5      to say thank you to all the DSPs, and give them

 6      the wages they deserve for all they have done for

 7      all of us.

 8             Thank you.

 9             SENATOR MARTUCCI:  100 percent.

10             Thank you, Mr. Stasio.

11             Next, I'd like to introduce Yvette Watts from

12      New York Association of Emerging & Multicultural

13      Providers, Incorporated.

14             YVETTE WATTS:  Thank you, Senator Manning,

15      and other ranking senators, for this opportunity to

16      speak.

17             As I said, I represent NYAEMP, which is the

18      multicultural providers.

19             We serve -- our agencies serve many of the

20      underserved and culturally diverse communities

21      throughout New York and upstate.

22             And I just want to say that the flexibilities

23      under the Appendix K, which enabled flexibility to

24      the waiver, the Commissioner pointed out many of

25      those flexibilities, which were critical to


 1      agencies, especially mine, as a lot of these

 2      programs were shut down.

 3             The Com Hab-R and certified residential

 4      settings was essential.

 5             Telehealth provisions of servicing units,

 6      billing, and flexibilities, all this was essential

 7      for small to mid-sized agencies who don't

 8      necessarily have the resources or the funds like

 9      their larger colleagues.

10             And during the pandemic, it was extremely

11      important because many of them don't have

12      multiservices programs where they could depend on

13      switching things around.  Many of them only had day

14      habs.

15             So these services were extremely important

16      for them.

17             I ask, moving forward, that the resources and

18      the data, as mentioned by one of my colleagues, be

19      more ready available so that these kinds of things

20      that occur, should the pandemic reoccur, my agencies

21      can continue to serve the families and the

22      individuals in these underserved communities.

23             It was extremely hard for them at the time,

24      but OPWDD was there to support.

25             But I would say that if resources and data


 1      were more readily available sooner, I think that

 2      would help things as we move forward.

 3             Thank you.

 4             SENATOR MANNION:  Thank you, Ms. Watts.

 5             Next, I would like to introduce Jim Moran

 6      from Care Design New York.

 7             JIM MORAN:  Thank you, Senator.

 8             And really want to start by thanking you all

 9      for holding this roundtable today; a very important

10      conversation.

11             I'm here to speak on behalf of the seven Care

12      coordination organizations in New York,

13      representing -- supporting approximately

14      110,000 people across the state.

15             Care Design New York specifically operates in

16      30 counties, including the, roughly, 10 counties

17      that were hardest hit by the pandemic during the

18      last spring.

19             And I want to focus my attention on some of

20      that information.

21             While the CCOs predominately provide --

22      really are the backstop mainly for people who live

23      in the general community, which is about

24      75,000 people, there are some 30 some-odd thousand

25      folks that live in residential programs as well that


 1      we also provide supports to.

 2             So the CCOs were a critical part, not only in

 3      supporting the 70-some-thousand people living in the

 4      community, but also the backstop in helping the

 5      residential providers through the challenges, and

 6      our members and families, from a communication

 7      perspective.  And we collected data.

 8             And I did want to talk a little bit about the

 9      data as I get into what I would say is our

10      recommendations towards -- in terms of innovation

11      around a need for housing, for example.

12             So I'm attaching to my testimony, Senator,

13      some data that we had collected across several

14      CCOs, and particularly those who were hardest hit

15      by the pandemic.  That has been attached to the

16      material that I sent you.

17             And I've given you specific data about

18      Care Design New York, and the data that we collected

19      throughout this.

20             So I just want to give you a brief summary of

21      what we learned from the analysis about the

22      infections.

23             Individuals with IDD, especially those in

24      certified congregate settings, were significantly

25      more likely to get infected by COVID-19 than the


 1      general population.

 2             That's kind of contrary to what the

 3      Commissioner had said.

 4             For example, the statistic that the

 5      Commissioner provided shows that there were

 6      10,000-some infections against a population of about

 7      120 some-odd thousand.

 8             But the reality of it was this:

 9             Approximately 7200 of those 10,000 lived in

10      group homes.  And there are approximately

11      38,000 people living in group homes.

12             So you're talking about an infection rate

13      within the group home community, which I included

14      family care in those numbers, is about

15      18 1/2 percent.

16             So it's not less than 10 percent when you

17      look at the hardest hit.

18             And the focus of this session is about

19      residential programs, so I just want to clarify

20      that.

21             Now, and I agree with the Commissioner on

22      some of the reasons why this -- our population is

23      vulnerable to the infection.

24             The age of the individuals, we have a high

25      number of people who are over the age of 50.


 1             The underlying health conditions.

 2             And, quite honestly, the need for physical

 3      contact by staff because of the physical [inaudible]

 4      of our individuals.

 5             And you had over 15,000 staff also get

 6      infected.

 7             There were space limitations obviously in the

 8      programs.  Many homes, individuals, are sharing

 9      bedrooms.  There's one or two bathrooms, or

10      three bathrooms, that have to be shared.

11             Very difficult to isolate individuals, in all

12      honesty.

13             Despite what the Commissioner said about the

14      availability of emergency capacity, it really did

15      not exist.  It took months to get that up and going.

16      And it was through a bureaucratic process that was

17      set up, that agencies had to get prior approval.

18             If agencies had waited to do that, more

19      people would have been impacted by the virus.

20             Agencies were left to do this on their own,

21      and figure out where to move people temporarily in

22      order to isolate people appropriately.

23             So that leads me to the issue of needing to

24      make sure that we have sufficient capacity in the

25      community.


 1             We had situations firsthand, every CCO has

 2      had this situation, where we had people whose family

 3      members were impacted by COVID.  They were the

 4      primary caregiver and they had nowhere to go.  We

 5      could not get them into one of those opportunities

 6      that the Commissioner referred to.

 7             And so we were struggling to find locations

 8      of where people could go to be healthy and safe.

 9             So I beg to differ with some of the

10      statistics that were being mentioned by the

11      Commissioner today.

12             We really need -- out of this, Senator, we

13      really need a plan for developing capacity in the

14      community for people who have nowhere else to go.

15             It's a problem not only from the pandemic

16      perspective, but also on an ongoing basis.  We

17      struggle every day to find the appropriate housing

18      for people that are about to become homeless.

19             That capacity is not readily available in the

20      system today.

21             Thank you.

22             SENATOR MANNION:  Thank you, Mr. Moran.

23             I think there's great consensus behind your

24      thoughts regarding housing for sure.

25             And I appreciate you compiling that data, and


 1      thank you for all the information that you provided.

 2             Thank you.

 3             Next, I would like to introduce

 4      Michael Seereiter from New York Alliance for

 5      Inclusion and Innovation.

 6             MICHAEL SEEREITER:  Thank you, Senator, and

 7      good afternoon.

 8             Very interesting dialogue today.

 9             I really appreciate it being the opportunity

10      to participate.

11             On program flexibility, the residential --

12      alternative residential housing capacities that were

13      discussed have been discussed several times now

14      here, yeah, provided -- you know, COVID-positive

15      individuals, a place to temporarily reside apart

16      from individuals who were COVID-negative, or

17      vice versa.

18             And this was, I think, a really important

19      factor, because it allowed people to remain at or be

20      discharged from the hospital to their -- to either

21      their home or to the emergency respite housing

22      location while they were COVID-positive.

23             It was a significant factor that did help

24      offer alternatives here in this particular sector.

25             The community rehabilitation residential


 1      program that BJ just mentioned, we're really happy

 2      to see that OPWDD is seeking to make this permanent,

 3      with some appropriate guardrails in their pending

 4      waiver amendment.  We think that's appropriate.

 5             Likewise, we have the telehealth

 6      flexibilities that were offered during the pandemic.

 7      It took forever to get them, but finally they were

 8      here.

 9             We're really glad to see that OPWDD is doing

10      the same with their upcoming waiver amendment as

11      well.

12             And then the day hab retainer day payment

13      program, the Commissioner talked about this, that

14      lasted for 30 days -- excuse me -- 90 days,

15      three consecutive 30-day periods.

16             The enhanced FMAP guidance that just came out

17      from the Centers for Medicare and Medicaid Services

18      authorizes states to seek and pursue another three

19      consecutive 30-day periods in the year 2021.

20             So we would encourage thinking about that

21      opportunity, given the fact that we're -- you know,

22      that the latter half -- first half of the year was

23      difficult.

24             Documentation.  There was a temporary roll

25      back on certain documentation requirements, allowing


 1      staff to focus on the care and supports that they

 2      provide.  And now OPWDD is looking to catch up, but

 3      we really need to revisit, and I think hold off on

 4      some of that, due to the staffing emergency.

 5             As it was said yesterday, every minute spent

 6      on documentation is one that you take away from

 7      direct service.

 8             And then I think, although the general piece

 9      of this, which is direct -- you know, we need a

10      greater level of flexibility in this system, which

11      is really only going to be achieved through a system

12      overhaul of regulation and administrative memoranda,

13      and really installing a different philosophy, you

14      know, one that's strength-based, and supports people

15      to make decisions about reasonable and appropriate

16      risks that they can take, and encourages more -- we

17      would encourage more conversation as part -- about

18      this as part of the 507 process.

19             Lastly I would say, you know, new models of

20      care, there are two things that stand out in my mind

21      about what we've learned:

22             Access to and swift use of isolation and

23      quarantine were absolutely key.

24             Individualized rooms and emergency respite

25      capacity were directly responsible for far lower


 1      rates of infection and death than in other settings

 2      where shared rooms were more common.

 3             And smaller residences, smaller residence

 4      size, is key.

 5             We really need to be moving our system -- our

 6      services system further along the continuum toward

 7      smaller resident sizes, and helping more people live

 8      more independently, including in things like

 9      noncertified options.

10             But, again, that comes back to a

11      philosophical mind shift, and a philosophical shift

12      of what our system is and how it operates, that we

13      really hope we can be having more conversations

14      about as part of the 507 process.

15             SENATOR MANNION:  Thank you, Mr. Seereiter.

16      I appreciate all that.

17             Next, I'd like to introduce Meri Krassner

18      from NYC FAIR.

19             MERI KRASSNER:  Thank you, Senator Mannion,

20      and the members of the committee, for this

21      opportunity to speak.

22             My name is Meri Krassner, and I'm a member of

23      the NYC FAIR Executive Committee.

24             I'm going to say, reiterate, some of the

25      things you've heard already.  But I am a parent and


 1      I speak from a slightly different point of view.

 2             We're very appreciative of the flexibility

 3      offered by the Appendix K waiver for people in

 4      lockdown.  Bringing day hab, telehealth, and other

 5      services into residences created a sense of

 6      normalcy.

 7             We are grateful that if you chose to bring

 8      your family member home as a safety measure, and to

 9      lessen the burden on staff and residences, we are

10      grateful it did not have negative financial

11      consequences for our providers.  We need them to

12      survive.

13             Most people have found telehealth as a

14      welcome substitute for many time-consuming and

15      staff-intensive medical visits, but easy access,

16      individual preference, and the ability to engage is

17      critical.

18             We saw how the lack of flexibility left

19      agencies struggling to figure out how to quarantine

20      the sick; and to find staff for these alternative

21      sites when they came online, how to staff

22      residences; and the inability to get individuals

23      exposed to the virus tested in order to isolate

24      those positive as quickly as possible to protect

25      others, and how help hospital personnel take care of


 1      and serve people with IDD who were hospitalized with

 2      COVID.

 3             As bad as it was for everyone, our family

 4      members with IDD were at greater peril without

 5      someone who understood them being there to

 6      communicate and advocate for them.

 7             After a great deal of statewide advocacy, we

 8      did get the right for a staff or a parent to

 9      accompany them in the hospital, which was better for

10      everyone, including the doctors and nurses.

11             Going forward from now we need to be cautious

12      when reconsidering the use of virtual services.

13      It's important to recognize that not all people in

14      residences have the Wi-Fi access and the devices

15      necessary to participate.  Many people need support

16      to use the technology.  Staff may or may not have

17      the ability to aid them effectively.  And some

18      people, like my son, do not relate to virtual

19      services at all.

20             Com Hab-R has been extremely beneficial to

21      many group home residences, ensuring some level of

22      structured activities in their day; however, this

23      should not be viewed as a long-range substitute for

24      day hab services unless that is the expressed desire

25      of the individual.


 1             Providing all services on-site is in direct

 2      conflict with the mandate for community inclusion.

 3      Our family members want and need to get out into the

 4      world and to learn new skills.

 5             For those older individuals ready to retire

 6      from their day programs, there should be flexibility

 7      to develop alternative social activities in the form

 8      of Com Hab-R or recreational senior programs.

 9             Our greatest worry is that decisions about

10      programming will be more cost-centered than

11      person-centered.

12             During the pandemic we watched staff

13      struggling to do their jobs while being at extreme

14      risk of getting the virus and spreading it to their

15      families and ours.  We know how hard and complicated

16      their jobs are because we as family members have

17      done them, and do do them.

18             We know how undervalued DSPs are.

19             One thing we should do is look to them as a

20      source of suggestions about how to deliver supports

21      and services more effectively, as they do that every

22      day.

23             Flexibility would be great for everyone.

24             Burdening DSPs and providers with excessive

25      amounts of documentation does no one any good.


 1             Agencies and DSPs themselves are a great

 2      resource in figuring out the difference between

 3      useful and counterproductive regulations.

 4             This increases the ability to be innovative,

 5      and frees DSPs from excessive documentation so their

 6      time can be spent with those that they are tasked

 7      with caring for.

 8             Thank you very much for listening.

 9             SENATOR MANNION:  Thank you, Ms. Krassner;

10      I appreciate it.

11             And, next, I'd like to introduce

12      Rhonda Frederick from People, Inc.

13             RHONDA FREDERICK:  Hi.  Thank you very much,

14      Senator Mannion.

15             I really appreciate the ability to give this

16      testimony, as well as thanking you as the Chair of

17      the Standing Committee on Disabilities for calling

18      this together.

19             I am from People, Inc., in Buffalo, New York,

20      and I'm going to talk more specifically about the

21      temporary-use respite.

22             My organization opened two such programs.

23             We had two respite homes that were able to be

24      used for this.  And we started to use them before

25      OPWDD came in and said that it was something that we


 1      could do.

 2             It wasn't that difficult with OPWDD to set

 3      up, but they did not seem to be much of a

 4      realization of what it entailed.

 5             Yes, we had two homes.  Yes, we had bedrooms

 6      and bathrooms.  We needed to get nurses, LPNs, and

 7      direct support professionals to staff 24/7.  We had

 8      to find full PPE; masks, gloves, gowns --

 9      everything.

10             We decided we needed to have a place outside

11      for our staff to change their clothes; to put on

12      scrubs, put on their PPE, and go out.

13             We had to have a place for them to take a

14      break.  It couldn't be within the house.

15             We ended up doing two homes because we did

16      one home for people that we knew were positive, and

17      one home for people that were under investigation.

18             We served over 100 people.

19             We opened it up to our own agency, to the

20      community, and to other agencies, and we're really

21      glad we were able to do it; and actually just closed

22      on June 1st.

23             During the time, some of the things that

24      became a little difficult:

25             The billing changed halfway through, how we


 1      would be reimbursed.

 2             There was onerous paperwork on who was there,

 3      who wasn't.

 4             And the selection of people that were

 5      eligible to go there was not within our control, not

 6      within the control of the other agencies or the

 7      hospitals and families.  It became very, very

 8      difficult.

 9             We did -- we had to provide information on

10      burn rate of our PPE.

11             Well, it didn't really matter what we told

12      OPWDD because they could not help us in getting more

13      PPE.

14             So we also gave our staff hazard pay.  No

15      idea how we were going to fund that.

16             So when -- in closing, I just want to say it

17      was a wonderful idea.

18             It helped us keep our infection rates very

19      low.  We helped the community, but I think we did it

20      mostly on our own.

21             Thank you.

22             SENATOR MANNION:  Thank you for that insight,

23      and thank you for the ability to be able to make

24      those necessary changes for the people you serve.

25             Next -- thank you, Ms. Frederick.


 1             Next, I would like to introduce Kathy Bunce,

 2      State-Wide Family Advocacy Network of New York.

 3             KATHY BUNCE:  I want to thank you,

 4      Senator Mannion, and members of the Senate Committee

 5      on Disabilities, for giving a voice to individuals,

 6      families, on this topic, and for your leadership and

 7      support for all people with IDD living in

 8      New York State.

 9             You definitely are our champions.

10             My name is Kathy Bunce.  I'm co-chair of the

11      DDAWNY Family Committee.  I live in Buffalo

12      New York.

13             My daughter is 25 years old, and she has

14      significant developmental delays and a seizure

15      disorder.  She lives at home with my husband and

16      I as an exceptionally social young lady.

17             COVID was very difficult for everyone,

18      especially for people like her who has high needs.

19             I'd like to start with recognition and thanks

20      to all providers and DSPs who worked so hard to keep

21      people safe during the pandemic, and continue to do

22      so every day.

23             They were the definition of "essential," and

24      continue to be.

25             And I want to credit OPWDD for their hard


 1      work.

 2             This was all new territory for everyone.

 3             Fortunately, Western New York had two

 4      distinct advantages:  The benefit of learning from

 5      other regions who were impacted early and hard, and

 6      the nonprofit agency leadership who communicated,

 7      collaborated, shared resources with each other and

 8      with stakeholders, to meet this challenge.

 9             It was beneficial and lives were saved.

10             With the vaccine, we see business reopening,

11      schools reopening, mask requirements removed

12      nationally, yet we wait for guidance from Albany to

13      catch up.

14             Changes were slow throughout, and we still

15      wait for them to address the transportation issue.

16             We witnessed the success of an agile system

17      in education with private schools who resumed last

18      September in our communities.  When positive cases

19      emerged they closed for a period of time to keep

20      people safe.  They were agile and they were

21      empowered to make those decisions.

22             Going forward, perhaps it's time to consider

23      decentralization and a strengthened regional

24      approach to supporting people with IDD.

25             OPWDD leadership in each region are


 1      knowledgeable of the infrastructure available and

 2      the unique needs of the people served in their

 3      communities.  They have strong partnership with the

 4      nonprofit agencies and, together, this team should

 5      be empowered to make decisions that are appropriate

 6      to ensure safety for the people they support.

 7             We saw the benefits of communication,

 8      collaboration, and shared resources amongst our

 9      nonprofit providers in our region.

10             Decisions on care should not be one size fits

11      all, and should not be managed centrally for the

12      entire state.  It doesn't work.

13             Thank you for the opportunity.

14             SENATOR MANNION:  Thank you, Ms. Bunce.

15             Last panelist for this topic is Karen Nagy

16      from Eastern New York Developmental Disabilities

17      Advocates.

18             KAREN NAGY:  Hi.  Thank you, Senator, and

19      thank you committee members.

20             We really appreciate your outstanding

21      advocacy on behalf of families and people with IDD.

22             I represent families in the Capital Region,

23      and speak for the steering committee at ENYDDA.

24             But I'm also a mom.  We have a 31-year-old

25      son who is profoundly disabled by autism, and he


 1      receives residential services through a local

 2      nonprofit agency.

 3             I'm going to adapt my testimony a little bit

 4      because I don't want to be redundant.  A lot of the

 5      things that have been said don't need to be said

 6      again.

 7             So I'm going to really focus on the staffing

 8      issue, because I think that some of the program

 9      flexibility really was dependent upon staffing that

10      has been at critically low levels.  And, really, the

11      nonprofit industry has experienced staffing issues

12      for the last five to six years since the onset of

13      the minimum wage raise.

14             So, you know, in order to provide flexible

15      programming, you have to have well-trained staff,

16      you have to have -- be able to offer proactive

17      interventions and reactive measures, to meet that

18      individual need, and to respond to any of life's

19      substantial challenges and changes.

20             We recognize that there's been a failure to

21      thrive amongst a wide range of people across the

22      state and country due to this virus, but preexisting

23      direct-care staff shortages challenged that program

24      flexibility during the pandemic.  And the pandemic

25      itself exacerbated an ongoing staffing crisis, and


 1      it threatens the safety and stability of our loved

 2      ones.

 3             So, you know, in closing, I would say we need

 4      to understand that the direct care of people with

 5      IDD has to be recognized as essential, and has to be

 6      socially valued and prioritized, and a worthy

 7      profession that supports a living wage in a diverse,

 8      primarily female and women of color who take care of

 9      our loved ones.

10             Thank you.

11             SENATOR MANNION:  Thank you, Ms. Nagy.

12             And I think there was certainly a lot that

13      all those panelists presented.  And I think the

14      acknowledging that part of our -- of one of the

15      crises that this community faces is a good place to

16      go.

17             Senator Martucci for two minutes of

18      questions.

19             SENATOR MARTUCCI:  Thank you, Chairman.

20             So first I see, unfortunately, I think

21      Mr. Moran dropped off.  But I'll just -- oh, there

22      he is.

23             Perfect.

24             So, really, more of a highlight on your

25      comment than a question -- I'll guess I'll make it


 1      your question.

 2             Could you tell me a little about the struggle

 3      you had with respect to the bureaucratic process of

 4      getting these respite sites set up.

 5             And, I'm sorry, I don't have much time,

 6      because I also have a quick question, thanks to

 7      Ms. Frederick.

 8             So if you could kind of fit that in in

 9      30 seconds, or a minute, that would be great.

10             JIM MORAN:  Yeah, I mean, we had worked with

11      a number of the provider associations, some of whom

12      are on this panel, and on the upcoming panels.

13             We have put together a proposal that kind of

14      went nowhere in terms of to try to create a flexible

15      model for the providers who were in the moment,

16      trying to deal with this, as Rhonda just went

17      through.

18             We were unable to get that.  They had set up

19      a more formalized process of approval.

20             And, quite honestly, it wasn't targeted to

21      the areas where the largest pandemic was happening,

22      which is in those 10 downstate counties at the time.

23             Too much time was passing on this.  And by

24      the time it got set up, quite honestly, things had

25      already started to calm down.


 1             So it just was -- it was a total bureaucratic

 2      process that was put in place in order to move

 3      forward with this.

 4             SENATOR MARTUCCI:  Thank you, Mr. Moran.

 5             And then my next question is for

 6      Ms. Frederick.

 7             First I'll say thank you to People, Inc., for

 8      stepping up and establishing those two respite

 9      homes.

10             Huge.

11             I've heard stories from providers in my area,

12      the same that you told, about the fact that you were

13      sort of on your own.

14             One of the questions I didn't get to with

15      Commissioner Kastner was, can you just tell us,

16      quickly, a little bit about how people were selected

17      to be eligible to enter these homes.

18             I know you had some frustration around that.

19             RHONDA FREDERICK:  It wasn't a real clear

20      process.

21             They would -- their care coordinator, or

22      their family, was to call the local DDRO.

23             The DDRO would -- there was a liaison.  They

24      would call our liaison, Can you handle this person?

25      Then it would go back to the DDRO.


 1             To be honest, in a couple of situations, we

 2      just had people calling us directly, and we tried to

 3      finesse it that way.

 4             But it often took a couple of days, which it

 5      should have taken a couple of hours.

 6             SENATOR MARTUCCI:  Understood.  Thank you so

 7      much.

 8             And thank you all for your testimony.

 9      I appreciate it.

10             I'll echo the Chairman's comment and say,

11      thank you for being here.

12             SENATOR MANNION:  Thank you to all the

13      panelists.  I do really appreciate it.

14             And one thing that we hear loud and clear

15      I think across the state, I'm sure Senator Martucci

16      would agree, we hear it about Western New York and

17      eastern New York, and I hear it and see it in

18      Central New York, is that the providers, the

19      advocates, work together to make things work.

20             And that's certainly shown through here with

21      our panelists in this group.

22             So I really appreciate everyone participating

23      today.

24             Our next panel is related to personal

25      protective equipment, and our first panelist is


 1      Randi DiAntonio from PEF (Public Employees

 2      Federation).

 3             RANDI DiANTONIO:  Good afternoon,

 4      Senator Mannion, and all the distinguished committee

 5      members.

 6             First off, I'd like to thank you for holding

 7      this roundtable today.

 8             I think it's incredibly important for us to

 9      review the things that have happened over the last

10      16 months, and what we can do, moving forward, to

11      ensure that some of the mistakes and the issues that

12      we saw are not repeated if we, God forbid, ever have

13      a future public health emergency.

14             I want to say we appreciate, you know, that

15      this was an overwhelming situation for everyone.

16             And like everyone on this call, we want to

17      ensure that you're aware of all the things that went

18      on.

19             So you do have our written testimony.

20      There's a lot of information in there.

21             There's also several letters that I point

22      your attention to, that went from PEF to the OPW

23      Commissioner from the onset, up until early 2021.

24             I'll focus my comments on PPE.

25             So at the beginning, no surprise, there was


 1      no real plan in place to deal with this.  It was a

 2      scramble.  Coordination was very disjointed between

 3      central office and the various DDSOs.

 4             The comment by Ms. Bunce on the earlier panel

 5      about waiting for Albany is something I think all of

 6      us in the field experienced.

 7             It has been disjointed for quite some time

 8      because of the centralization of how decisions are

 9      being made.  And I do think that that is something

10      we should certainly look at, moving forward.

11             Across the board there were insufficient and

12      inadequate supplies of PPE.  Many locations had no

13      masks, no gowns, no eye or face protections.

14             Conservation of PPE lasted for several

15      months.

16             At the very beginning, and up until maybe

17      two or three months into it, people were being given

18      one mask and told to use them for up to five days.

19      They were being hung on bulletin boards to dry out.

20             This obviously undermines the quality of the

21      PPE.

22             Gowns were reused.  Several DDSOs were

23      running out of gloves, cleaning supplies.

24             PEF represents the State side of the system,

25      and, you know, we have also been dealing with crisis


 1      staffing issues.

 2             PEF ended up buying PPE and supplying PPE to

 3      many members and -- to help them stay protected.

 4             Over time the agency did begin to provide

 5      more masks and other PPE; however, they still have

 6      not implemented any N-95 fit testing programs.

 7             They are still opposed to our position that

 8      N-95 should be utilized, not just for aerosolized

 9      procedures, but also when providing up close and

10      personal care.

11             We have had this conversation since the very

12      beginning.

13             There is still no consistent testing process

14      being done.

15             So it is very difficult to assess how

16      accurate the numbers that were provided earlier are

17      when you don't have a very formal testing process in

18      place that is easily accessible to the staff.

19             Basically, at this point, you know, we know

20      that, moving forward, we want to make sure we have

21      all the supplies on hand.

22             The agency needs to be accountable, to have a

23      sufficient PPE supply; to ensure staff are properly

24      trained; fit tested, fit checked, for any

25      interactions with COVID-positive or suspected


 1      individuals.

 2             There also needs to be clear procedures for

 3      procurement, which has fallen apart over the years

 4      because they centralized procurement through the

 5      business service center.

 6             So I know I'm out of time, so I will limit my

 7      response, but thank you so much.

 8             SENATOR MANNION:  Thank you, Ms. DiAntonio.

 9             Next panelist for this topic is Cyndi Borozny

10      from the Arc of New York.

11             CYNDI BOROZNY:  Thank you,

12      Senator Manning [sic], and other committee members.

13             My name is Cynthia Borozny.  I am the chief

14      financial officer for the Arc of New York.

15             On the onset of the pandemic, the use of

16      appropriate PPE was quickly identified as a critical

17      factor in mitigating the transmission of COVID-19.

18             However, despite our vulnerable population,

19      we were not granted priority access to PPE through

20      state and local emergency agencies.  We were offered

21      no additional resources for procurement of PPE.

22             Our dedicated staff who provide 24-hour

23      close-contact care were not identified as essential

24      workers or provided the same protections other

25      health-care providers were.


 1             The Arc found itself scrambling to create

 2      contacts, and purchased PPE from vendors whose costs

 3      were rising with the demand.  We were forced to

 4      develop an independent system for procurement and

 5      distribution of PPE, a system which required

 6      significant financial and operational resources to

 7      sustain.

 8             Executive staff and chapter leadership took

 9      shifts unloading tractor-trailer trucks full of

10      masks, gowns, gloves, thermometers, and other needed

11      supplies.  Our headquarters became an ad hoc PPE

12      warehouse and distribution hub.

13             Our organization had strategic financial

14      reserves which we used to purchase over $4 million

15      in supplies.  We were fortunate.

16             I have no idea what smaller providers did to

17      ensure the safety of their staff and the people they

18      support.

19             Thanks to recent policy changes, most of the

20      PPE costs will be reimbursed by FEMA.  But that was

21      not a guarantee when we were draining our reserves,

22      and the costs -- the other costs of the pandemic

23      will have repercussions on our field for many years

24      to come.

25             In the future, we need a streamlined system


 1      for PPE procurement, distribution, and adequate

 2      funds to cover these costs.

 3             We need staff to be recognized as vital

 4      frontline health-care workers, and we need to be

 5      better prepared and better supported to ensure that

 6      the safety of New Yorkers with IDD is required.

 7             Thank you for the opportunity to share our

 8      experience with you today.

 9             SENATOR MANNION:  Thank you, Ms. Borozny.

10             Next, I'd like to introduce

11      Margaret Raustiala -- Raustiala --

12             You can correct me, Margaret.  I apologize.

13             -- from State-Wide Family Advocacy Network of

14      New York.

15             MARGARET RAUSTIALA:  And what -How do I get

16      on here now?

17             Am I on?

18             SENATOR MANNION:  You're on, Margaret.

19             MARGARET RAUSTIALA:  Okay.  Thank you.

20             Thank you for your leadership.  You really

21      hit the ground running; appreciate it.  And we

22      appreciate the great job you're doing.

23             Anyway, it was March of 2020, not March of

24      1820; yet with more than 37,000 community-based

25      residential settings, apparently, New York State


 1      neglected to plan for or distribute PPE to the

 2      residents and staff who lived and worked in these

 3      settings.

 4             As a parent, I salute the providers and their

 5      associations who, in the face of zero assistance

 6      from government, were forced to swing into action

 7      and dive into a world where they had no contact or

 8      experience.

 9             In those early days, when I learned of the

10      dire need for PPE in my son Rico's [ph.] group home,

11      I reached out to a longtime friend who I knew sewed.

12             Please, would she make masks for the

13      residents of Rico's group home?

14             A former nurse, she knew what was required

15      and came through with 30 masks.

16             If this sounds ridiculous, it's because it is

17      ridiculous, and it should never ever happen again.

18             Much of the needed PPE was manufactured in

19      China.  The providers had to learn how to make

20      foreign contacts, ensure that the vendors were

21      properly vetted, pay for, and distribute PPE.

22             Of course vendors knew that they were

23      desperate, so the cost of these -- this PPE was

24      exorbitant.

25             My understanding is that the cost of PPE was


 1      not reimbursed until recently for some, and still

 2      not for others.

 3             It should be noted, as I think an earlier

 4      person mentioned, that under the American Rescue

 5      Act, at the increased -- FMAP would be used for --

 6      you know, for reimbursing the providers for this

 7      PPE.

 8             But this is spilt milk.

 9             The important thing is it never happens

10      again.

11             When New York State develops its plan for

12      responding to future pandemics, and, unfortunately,

13      the experts assure us that there will be future

14      pandemics, the system of supports and services to

15      individuals with developmental disabilities must be

16      a priority in the same way that hospitals are

17      priority.

18             Future plans must designate DSPs the backbone

19      of our system, and other staff for OPWDD-funded

20      services and programs, to plan accordingly for their

21      need for PPE.  And future plans must designate the

22      service recipients of OPWDD-funded programs to be a

23      priority, and plan for PPE.

24             People with developmental disabilities who

25      live in congregate settings got sick with COVID


 1      three times more often than the general public was

 2      from this disease, and three times more often they

 3      died.

 4             Due to the lack of transparency regarding the

 5      number of residents in group homes that became sick

 6      with COVID, as well as the number that died from

 7      COVID, research to find out the percentage of the

 8      higher rate -- what percentage of the higher rate

 9      was due to the underlying comorbidities that

10      Dr. Kastner mentioned, and what percentage was due

11      to the lack of PPE early on, the State's slow

12      response to providing guidance on quarantine, and

13      the State's slow response to provide guidance on

14      proper training.

15             New Yorkers with developmental disabilities,

16      and those who care for them, will never again be

17      forgotten and left to fend for themselves.

18             Thank you.

19             SENATOR MANNION:  Thank you, Margaret.

20             I appreciate those strong words.

21             Next, I'd like to introduce Tom McAlvanah

22      from New York Disability Advocates, and InterAgency

23      Council of Developmental Disabilities.

24             TOM McALVANAH:  That's great.

25             Thank you, Chair Mannion, and thanks,


 1      Senator Martucci, and all the members of the

 2      committee, and thanks to our panelists, and thanks

 3      for having us here today.

 4             When the pandemic hit, the IDD service system

 5      struggled to be recognized as a significant

 6      component of the public health system responsible

 7      for keeping our particularly vulnerable population

 8      safe and out of hospitals.

 9             Our residential programs were left to finance

10      the cost of the public health emergency on our own

11      without any financial support from the State to meet

12      the increased cost of PPEs, staff overtime, hazard

13      time, sanitizing, and other equipment and supplies,

14      and other COVID-related expenses.

15             NYDA did a survey that estimated that,

16      between March and October of 2020, not 1820 as

17      Margaret suggested -- we -- our providers spent out

18      $34 million just to help get the supplies needed for

19      their hero DSPs who were on the front lines every

20      day.

21             It -- pretty much, and down in New York City,

22      it took nearly six weeks to get any response.

23      Certainly it took that long, if not longer, to get

24      our DSPs recognized as essential workers.  And

25      you'll hear about that some more later.


 1             But for us, we had to commandeer -- as

 2      Margaret mentioned, we commandeered orders from

 3      China.  We worked with a local distributor.

 4             IAC member agencies spent, initially, about

 5      three-quarters of a million dollars on it.

 6             We worked with other NYDA partners later in

 7      the year, and we spent well -- millions of dollars

 8      to secure our own PPEs.

 9             I'm just going to read to you, quickly, a

10      couple of things.

11             One is, that the message from OPWDD, when we

12      were trying to get PPEs, was first to source from

13      a local supplier; which, of course, pay for it on

14      your own.

15             Second was, to reach out to your local

16      county's OEM.

17             And if did you not get a response from the

18      OEM, then inform the incident management unit via an

19      email, with a ticket number we received from OEM,

20      your specific request, the number, and supplies,

21      et cetera.

22             And on April 2nd we received an email from

23      the OEM, that due to the national shortage of PPEs,

24      collection swabs and other medical supplies, DOH and

25      [indiscernible] cannot supply programs, like this


 1      one particular provider, with these items.

 2             It is critical that these supplies be

 3      prioritized for our health-care system, in

 4      particular for hospitalized patients.

 5             I think what this really comes down to is, is

 6      that the entrenched bureaucratic processes, the

 7      compartmentalization of government, when a crisis

 8      hits does not work.

 9             We have to, as New York State, remember that

10      we provide 90 percent of the services, the

11      not-for-profit community in this state, and

12      80 percent of the certified services.

13             And I know I'm out of time, I'm wrapping up.

14             What we need, is we need greater financial

15      resources and supplies to help us manage the crisis.

16             When 9/11 happened, when hurricanes "Sandy,"

17      "Irene," and all those other related events, when

18      blackouts happened, we didn't wait for OPWDD.

19             I was an executive director of a residence

20      down in Lower Manhattan that got flooded out.

21             We immediately moved our people to a day

22      program, set up bedrooms, had the staff who they

23      knew there, and actually provided a safe and secure

24      environment.

25             That's what this community does.


 1             That's what our providers do every day; not

 2      waiting for a bureaucratic process to try and tell

 3      us how we should go about it.

 4             We believe in our mission, we believe in the

 5      people and families we support, and we will always

 6      be there.

 7             Thank you, Mr. McAlvanah.

 8             Our last panelist for this group is

 9      Alyssa Galea from Disability Rights New York.

10             ALYSSA GALEA, ESQ.:  Thank you again,

11      Chairman Mannion, and the committee, for the

12      opportunity to speak today.

13             It perhaps goes without saying that I don't

14      think that we can overstate the importance of PPE to

15      group homes.  Their shared living spaces, the people

16      who are there are at a greater risk of infection and

17      complications from COVID-19.  And the staff working

18      there typically provide extensive hands-on care that

19      makes social distancing physically impossible.

20             Since March of 2020, OPWDD and DOH's guidance

21      has recognized the need for PPE to limit the spread

22      of infection in group homes.

23             We all know that there's been a lot of

24      trouble that group homes have had in getting PPE,

25      and we know that there was a national shortage in


 1      the early months of the pandemic.

 2             But something told to us as a significant

 3      issue was the fact that group homes weren't

 4      considered a priority, so that [indiscernible]

 5      allocations PPE that was available.

 6             We had providers reporting to us that they

 7      approached offices in their systems, and were told

 8      that they were not an essential health-care setting,

 9      or because they weren't a nursing home, that their

10      requests were going to be denied or canceled by

11      their local health departments and offices of

12      emergency management, leading, as you've heard, to

13      the providers having to compete in the private

14      market, the higher price, and also sometimes

15      poorer-quality PPE.

16             We really think that the people who live in

17      group homes can't be an after-thought when it comes

18      to policy, planning, and allocating resources.

19             We're talking about PPE here today, but we

20      could really be talking about anything.

21             And people with IDD, and the staff who

22      support them as well, need to be part of the

23      conversation from the beginning at every level of

24      the state and local governments to ensure that

25      they're planned for and protected in future public


 1      emergencies.

 2             You had mentioned a bill to require OPWDD to

 3      provide PPE to their providers.

 4             And we think, you know, DARNY, we definitely

 5      support that.  But, you know, it's part of -- we

 6      really think it should be passed as part of a larger

 7      conversation for all resource allocations and

 8      planning.

 9             We know this community needs to be at the

10      table from the get-go.

11             Thank you.

12             SENATOR MANNION:  Thank you very much.

13             And I agree, the conversation included items

14      related to training and testing.  And I don't even

15      know if we're going to get there.

16             But back to Ms. Galea's comment, I will say,

17      yes, there is a bill out there, but we want to do

18      more good than harm.

19             So I'm interested to hear from anyone, as we

20      have a bill, where OPWDD, in a public health crisis,

21      would have to provide PPE for different providers.

22             Is that the right method?

23             I hear contradictory statements about the

24      necessary -- the bureaucracy that we have to go

25      through.  And that maybe providers could obtain


 1      these quicker.

 2             Although, in a public health crisis, I know

 3      that was a tremendous challenge.

 4             Would you be supportive of this bill, or, as

 5      it relates to PPE, would autonomy be better in

 6      trying to secure those?

 7             I'm interested to hear from anyone.

 8             TOM McALVANAH:  I think, certainly,

 9      coordination is key.

10             And my apologies not knowing each piece of

11      the bill that you have there.

12             But, clearly, it is a better response than --

13      than -- you know -- you know, we can't -- you'll

14      have to source it somewhere else.

15             We actually need a better response from

16      government when we have a crisis.

17             And I must say that eventually they came

18      through.

19             I neglected my remarks, the Department of

20      Health and Mental Hygiene in New York City

21      eventually came through at the end of April to

22      supply PPEs.  But it was through them.  It wasn't

23      even through OPWDD.

24             Why DOH has to have the final say in terms of

25      what happens to an OPWDD certified residence is a


 1      little unclear to me.

 2             SENATOR MANNION:  And to Ms. Borozny, have

 3      you already been reimbursed by FEMA for the purchase

 4      of the PPE?

 5             CYNDI BOROZNY:  So we have received about

 6      half of our reimbursement, and we still have a few

 7      applications that are under review.

 8             SENATOR MANNION:  Thank you.

 9             And, Ms. DiAntonio, you stated that your

10      organization had provided PPE to your members.

11             Are you eligible to receive reimbursement

12      dollars from FEMA as -- as a labor association?

13             RANDI DiANTONIO:  I don't know, but it's

14      certainly something our secretary-treasurer would be

15      looking into and be very interested in.

16             I will say that, you know, some of the

17      changes that happen on the procurement side many

18      years ago, I think, influenced how this rolled out.

19             You know, when DDSOs had control over their

20      local procurement, they knew what was needed, they

21      could work with local agencies and within their own

22      system.

23             And now everything goes through a centralized

24      business service center.  It takes much longer.

25      They don't -- the types of things we need to order,


 1      like gloves and medical supplies that we would have

 2      normally had on hand, we didn't, because it's been

 3      years of flat budgets.

 4             And so there's definitely a lot of room for

 5      improvement in coordination, and shifting how local

 6      authorities are able to maneuver throughout

 7      purchasing.

 8             SENATOR MANNION:  Thank you.

 9             Senator Martucci.

10             SENATOR MARTUCCI:  Thanks, Chairman.

11             You know, you really covered, I think, all

12      the questions.

13             And, certainly, all I just wanted to say to

14      everyone was, thank you for all that you've done in

15      terms of stepping up in the absence of the

16      department providing leadership when it was needed

17      the most.

18             So, you know, the story I heard from all of

19      you is the story that I've heard from providers in

20      my region, and providers that have reached out to

21      me, which is that -- is what -- it's what Tom talked

22      about, is that this is an industry of folks who

23      don't wait; but, rather, act quickly.

24             And I think your quick actions undoubtedly

25      saved lives.


 1             So thank you for what you did.

 2             And, certainly, I could not agree more with

 3      respect to the fact that it's so important that we

 4      prioritize DSPs as key -- as key, in terms of

 5      receiving PPE as we move forward, because you are as

 6      critical as it gets.

 7             So, again, thank you all for all of your

 8      testimony today.

 9             And thank you for, like I said, the --

10      lifesaving action that you took in the absence of

11      leadership from the State.

12             SENATOR MANNION:  Thank you,

13      Senator Martucci.

14             Thank you to all of the panelists.

15             I think this is probably a good segue into

16      staffing and testing, particularly, as I'm sure we

17      will hear, about establishing DSPs as an

18      occupational code with the Department of Labor,

19      which is absolutely essential.

20             Being mindful of time, I'd just ask that all

21      panelists and chairmen and others try to adhere to

22      the two-minute rule, as we're up to two hours here.

23             I do think that this conversation is a very

24      good one, necessary.  And certainly, you know,

25      there's being -- you know, I think we're only


 1      validating what needs to be prioritized, and also

 2      seeing areas where we can improve.

 3             So our next panel, as I said, is related to

 4      staffing and testing, and our first panelist is

 5      Joshua Terry from CSCA Local 1000.

 6             JOSHUA TERRY:  Thank you, Chairman; thank

 7      you, Senator Martucci.

 8             I hope this is one of the final of these

 9      events that we do via Zoom, and not in person.

10             But thanks for having me.

11             I mean, CSCA represents 10,000 direct-support

12      assistants within OPWDD.

13             They showed up every day of this pandemic;

14      they kept coming to work in every part of the state,

15      and they never stopped.

16             So I think we can praise them, and we call

17      them "heroes," but I think our actions are going to

18      speak louder than words in the next few years.

19             Senator Mannion, just to answer one of your

20      questions earlier about deaths in the workforce,

21      we've been able -- we found, sadly, 12 of our

22      members in OPWDD who have passed away from COVID

23      that they contracted on the job; and that's because

24      they kept showing up, they kept taking mass transit

25      to get to work.


 1             And it's really sad.

 2             But -- you know, and that may probably is an

 3      undercount, just because we don't always know.  But

 4      that's our number.

 5             What I want to talk about is the structural

 6      staffing deficit that we have inside of OPWDD.

 7             COVID-19 did not cause this structural

 8      staffing deficit, but it definitely highlighted our

 9      needs.

10             Over the last decade we've had a decreased

11      workforce in OPW of 15 percent.

12             This has caused massive increases in

13      overtime.  So just for example, since 2010, the

14      average OPWDD employee works five additional

15      workweeks of overtime every year.

16             I mean, so that's just how short-staffed we

17      are.

18             Due to this staffing deficit and their status

19      as essential workers, OP workers were required to go

20      to work.  Even if they had a positive COVID --

21      COVID-19 diagnosis, but were asymptomatic, they had

22      to keep going in.

23             I mean, they -- we are so stretched, that

24      even contracting this virus could not let them miss

25      work if they were healthy in other ways.


 1             We also had members that had to float from --

 2      in clusters from home to home, which likely spread

 3      the disease into different homes among staff and

 4      residents.

 5             One thing that I want to bring up, that we

 6      did found [sic], when the day habs closed, that

 7      freed up about 1,000 of our members to go back into

 8      group homes.

 9             In those group homes, we have found that

10      overtime was driven down so much because of the

11      influx of staff.

12             So we know that staff -- more staff works,

13      more staff will let us have our overtimes come down.

14             So what we need to work on is a statewide

15      policy, between the State and the voluntary

16      providers, to recruit, train, and retain these

17      workers so that we don't end up in this situation

18      again, because COVID's over, but we still have

19      staffing needs.

20             And I know my time is up, but I'll be glad to

21      talk about this further.

22             SENATOR MANNION:  Yes, we agree, Josh,

23      absolutely.

24             Next, returning is Marco Damiani from

25      AHRC New York City.


 1             MARCO DAMIANI:  Thank you again, Senators

 2      Mannion and Martucci.

 3             The IDD workforce is our most valuable asset.

 4      The work they did at the onset of the pandemic, and

 5      continued to do, is the definition of "essential."

 6             Now, Josh just covered a number of staffing

 7      considerations, and don't need to repeat them.

 8             However, I will add that we must continued to

 9      advocate for and achieve a living, not a minimum,

10      wage, as well as a powerful career path, across

11      New York State for the DSP workforce.

12             It's about equity, it's about stronger

13      recruitment and retention, and it's about time.

14      They have done more than enough to earn it.

15             One of the most challenging staffing issues

16      early on was the availability of additional nurses.

17             We haven't heard a lot about this.

18             Group homes are just that: they're homes, not

19      medical facilities.

20             So the immediate need to add nurses to group

21      home staffing was extremely tough.

22             We were able to get some additional nurses

23      through temp agencies at a very high cost, as,

24      virtually, all available nurses were already

25      deployed to hospitals and nursing homes.


 1             More effective staffing models, with the

 2      assistance from government, to access these vital

 3      professional supports are needed going forward just

 4      in case.

 5             Routine testing is one of the pillars of

 6      pandemic management.

 7             When testing finally started to became

 8      available more broadly, we immediately applied for

 9      and received a limited-lab license just to get

10      access to 2,000 rapid testing kits.

11             Most other organizations can't do this.  We

12      were lucky we could do it.

13             Many agencies are bearing very substantial

14      testing costs.  FEMA may or may not cover all of

15      these expenses.

16             Rapid testing capacity is critical.  We're

17      talking a lot about vaccinations, and that's

18      important.  But rapid testing is critical.  The

19      technology is there, and readily available.  Let's

20      make immediate and full use of it, and be funded for

21      it.

22             Thank you, again.

23             SENATOR MANNION:  Thank you.

24             Next, I would like to introduce

25      Rachelle Kivanoski from NYC FAIR.


 1             My apologies, Rachelle, if I missed.

 2             RACHELLE KIVANOSKI:  No, you were perfect.

 3      Thank you.

 4             And I want to thank Senator Mannion,

 5      Senator Martucci, and all the members of the

 6      Disabilities Committee for this opportunity.

 7             My name is Rachelle Kivanoski, and I am a

 8      member of the executive committee of New York City

 9      FAIR, an organization of family advocates.

10             I'm also the mom of a young man who resides

11      in a small certified IRA.

12             My son and I have both witnessed and endured

13      this pandemic firsthand, including a two-week

14      quarantine in his bedroom due to illness of one of

15      his four roommates, and the prolonged lockdowns.

16             We so appreciate the dedicated lifesaving

17      work of our DSPs.

18             We in New York City FAIR understand the

19      challenge of developing nuance policies during the

20      early chaotic days of the onset of the pandemic and

21      lack of available testing.

22             What I would like to focus on today are the

23      decisions made during the early fall that may well

24      have contributed to potentially avoidable infections

25      and deaths during the second wave of the pandemic,


 1      and are still not adequately addressed in the newly

 2      revised OPWDD guidelines released on May 17th.

 3             There were close to an additional 200 deaths,

 4      from December to mid-May, out of the total

 5      669 deaths in group homes; once again, at a higher

 6      rate than the general population.

 7             While the robust rate of vaccination has

 8      provided protection to the overwhelming majority of

 9      group home residents, significant risk remains as

10      people start to return to other programs where the

11      proportion of vaccinated individuals who reside in

12      the community, and staff vaccination overall,

13      remains below 35 percent.

14             Perhaps the most problematic existing

15      guidance permits staff with known COVID exposure to

16      continue working as long as they are asymptomatic,

17      as Mr. Terry just said.

18             While OPWDD acknowledged the risk of

19      asymptomatic transmission, the guidance clearly

20      underplayed its importance, and relied only on

21      masking, hand hygiene, and the almost impossible

22      standard of social distancing within a residence.

23             The current COVID infection rate is very low,

24      but it undoubtedly underestimates the level of

25      asymptomatic infection in the community at large.


 1             Since asymptomatic people generally are not

 2      tested, there is still no mandatory COVID testing

 3      for staff or residents even when there is a positive

 4      case in a residence or in a program.

 5             The "see no evil" approach to infection

 6      control continues to put residents and staff at

 7      risk.

 8             And I would like to echo Mr. Damiani in

 9      saying, in-home rapid testing kits are now readily

10      available at a reasonable cost, especially if some

11      of the enhanced FMAT funds are allocated for this

12      purpose, and for providing incentives to staff to

13      get vaccinated.

14             So we would like to recommend mandatory

15      on-site pre-shift testing of all unvaccinated staff

16      in all residential and day program sites.

17             Unvaccinated staff with known COVID exposure

18      should not be permitted to work, and providers

19      should strive to reduce assigning staff to multiple

20      sites.

21             Thank you.

22             SENATOR MANNION:  Thank you for your

23      statement, and thank you for your recommendations.

24             Moving on, back to Michael Seereiter from

25      New York Alliance for Inclusion and Innovation.


 1             MICHAEL SEEREITER:  Thank you again for the

 2      opportunity.

 3             On staffing, direct support professionals,

 4      it's their dedication, their commitment, and their

 5      willingness to put themselves and their families in

 6      harm's way to support people with disabilities.

 7             They were the most significant factor in why

 8      people with IDD were not more significantly impacted

 9      by COVID through this crisis.

10             As we heard earlier, DSPs literally moved in

11      and slept on the floors and the couches of those

12      with IDD that they support for weeks on end.

13             And we've hoisted DSPs up on our shoulders

14      and lauded them as heroes; yet their pay is

15      humiliating, and it speaks to a hypocrisy in our

16      society's values and a correlated government

17      prioritization for funding for this work.

18             During the early days of the pandemic, many

19      DSPs said something like, if we aren't respected as

20      a profession and compensated appropriately after

21      this display of commitment, and risking our lives

22      and our families' health and well-being during

23      COVID, I'm done.

24             And now we're seeing that exactly come true

25      with an unprecedented staffing emergency overtaking


 1      us as we speak.

 2             We must take immediate short-term and

 3      long-term steps to address this emergency now, and

 4      for the future.

 5             We outlined many of those steps at

 6      yesterday's Emergency Workforce Summit, and we now

 7      need to take some action.

 8             The other significant reason that people with

 9      IDD were not more impacted by COVID is the

10      extraordinary measures that provider organizations

11      went to to procure PPE and pay hazard and hero pay,

12      largely without the reimbursement of revenue that we

13      were just discussing.

14             Tom mentioned earlier about the cost the

15      providers incurred for PPE.

16             Additionally, providers paid $130 million in

17      hazard and hero pay from the period of time, from

18      March to November; while at the same time, their

19      revenue went down $327 million.

20             We need to use some of the enhanced FMAT

21      resources to recognize and reimburse for these

22      largely unreimbursed expenses, and to begin paving

23      the way for bringing DSP wages back up.

24             Lastly, I think it's important that we

25      recognize that DSPs are disproportionately Black and


 1      Brown New Yorkers, not dissimilar to other

 2      caregiving and human-services sector professions.

 3             As Jim Moran said previously, the nature of

 4      the work makes people susceptible to infection

 5      transmission with a virus like COVID.  So it's not

 6      hard to surmise how COVID infection and death rates

 7      are higher in Black and Brown communities, in part,

 8      because -- in part, caused by the jobs that these

 9      people have, or had, as the case may be.

10             On testing, access to testing, it was a

11      significant problem early on.

12             It is clearly linked to a significant lack of

13      recognition by New York State; I would say

14      Department of Health, the health system overall,

15      about OPWDD, its system, and direct support

16      professionals as essential workers, as others have

17      noted before.

18             And it took exceptional levels of advocacy

19      from all levels of stakeholders, and OPWDD included,

20      to get IDD services, and others, like behavioral

21      health, recognized as part of the public health

22      system for the purposes of the pandemic management.

23             We can't let that happen ever again; we can

24      never again be left as an after-thought.

25             Thank you.


 1             SENATOR MANNION:  Thank you, Mr. Seereiter.

 2             Back to Jim Moran from Care Design New York.

 3             JIM MORAN:  Thank you, Senator.

 4             I'm going to sort of shift away from my

 5      testimony, which is really focused on the

 6      vaccination and testing of employees.  Clearly, it's

 7      a critical issue that has been talked about.

 8             I wanted to shift to -- really, to a bill

 9      that you've now sponsored, Senator, and that is, at

10      the height -- the ultimate slap in the face I see

11      with all of this, during the height of the pandemic,

12      that a budget proposal was put out to cut the rates

13      of the service -- residential service providers; to

14      eliminate hundreds of millions of dollars of funding

15      to the residential providers during the height of a

16      pandemic.

17             And the fact that, you know, well, that's

18      because we've got to make the numbers work.

19             And, you know, as somebody -- as one of the

20      parents said earlier, the State has been

21      cost-centered as opposed to person-centered.

22             And at the height of a pandemic, to think

23      that that -- that -- that really tells you what the

24      feeling is of the value of not only the people that

25      we're blessed to be able to support day in and day


 1      out, but the people who work with those individuals

 2      to help them live the best lives possible.

 3             I want to get behind your bill, Senator, and

 4      really applaud you for taking that on, because the

 5      last thing the providers -- service providers need

 6      right now is one more cut.

 7             Enough is enough.

 8             So, thank you.

 9             SENATOR MANNION:  Thank you, Mr. Moran.

10             I went out of order a little bit, so

11      I apologize to folks.

12             I will make sure that I catch everybody.

13             But, next, is Julie Keegan from

14      Disability Rights New York.

15             JULIE KEEGAN:  Good morning -- or, good

16      afternoon, Senator.

17             I really appreciate the opportunity to be

18      here from Disability Rights New York, the protection

19      and advocacy system for New York State.

20             Much of what I had planned to say is covered

21      in a very comprehensive report that my colleague

22      Alyssa Galea alluded to, which was based on a

23      seven-month study, looking at the treatment of

24      people in group homes in New York during the COVID

25      pandemic, and the State's response.


 1             And that is available on the Disability

 2      Rights New York website.

 3             But I do want to highlight a few things that

 4      have been talked about here, to some extent, but the

 5      first is, with regard to staffing, is I want to

 6      emphasize also, that these are individuals, the

 7      direct support professionals, that are working in

 8      these very stressful times, not only getting paid

 9      less, but, also, because of the diminished

10      workforce, having to cover extra shifts and working

11      in a short-staffed situation.

12             These folks are disproportionately Black in

13      New York.  Only 17.6 percent of the general

14      population is Black.  But for direct support

15      professionals, we're looking at 35 to 42 percent.

16             That's very significant.

17             Also, direct service professionals are

18      disproportionately women, and they're people born in

19      other countries.

20             So I think we need to be mindful of that when

21      we're looking at pay equity.

22             And then, also, and I will say it also, there

23      was heroic, absolute heroic, conduct by these

24      individuals during this crisis.

25             And I totally agree with Michael, that more


 1      people would have died had not these folks stepped

 2      up and stepped in and stayed for weeks on end to

 3      minimize exposure.

 4             With regard to testing, what I wanted to say

 5      there, is that it's very shocking and disturbing

 6      that individuals in group homes are not given the

 7      same priority and the same protection as people in

 8      other congregate settings.

 9             Although testing was not widely available at

10      the outset of the pandemic, this has not been the

11      case for many months.

12             And, indeed, over a year ago, New York State

13      mandated staff testing in congregate settings other

14      than group homes.  Beginning on May 15, 2020, staff

15      working in nursing facilities were mandated to be

16      tested two times a week.

17             It's very troubling that people in group

18      homes are not given the same protection as people in

19      nursing homes and other congregate settings.

20             People in group homes require close physical

21      contact with staff and confined spaces just as

22      people with nursing homes do.

23             As Dr. Kastner mentioned today, people in

24      group homes often have comorbid conditions that put

25      them at higher risk of serious illness and death


 1      just like nursing home residents.

 2             There is no rational basis for this

 3      discriminatory practice.

 4             For all of these reasons, the State must

 5      require and fund regular testing of staff who have

 6      not been vaccinated.

 7             We recommend that both direct support

 8      professionals and provider agencies be required

 9      partners in creating the parameters of a testing

10      mandate.

11             Thank you very much.

12             SENATOR MANNION:  Thank you very much,

13      Ms. Keegan.

14             Next is, we're back to Randy DiAntonio from

15      Public Employees Federation.

16             RANDI DiANTONIO:  Thank you, Senator Mannion.

17             So I am from the Public Employees Federation,

18      but I've also worked for OPWDD for 23 years as a

19      social worker.

20             And I agree with a lot of what my fellow

21      panelists have said today about the staffing crisis,

22      and that crisis clearly goes across all state

23      agencies, but, in particular, OPWDD has been the

24      hardest hit.

25             My colleague from CSEA mentioned about


 1      15 percent of the workforce has been lost over the

 2      last decade.

 3             That equates to over 4500 employees.

 4             Let me say that again:  Over 4,500 employees.

 5             OPW had the most overtime of any --

 6      25 percent of the 19 million hours worked in

 7      overtime during COVID was OPWDD.

 8             There's been a systemic effort to shrink the

 9      footprint of this agency and the critical levels of

10      care.  And we saw it magnified throughout this

11      pandemic.

12             The shortages started to allow the agency to

13      justify a trend of suspending services, closing

14      group homes, because they couldn't staff those

15      settings.

16             Many of our members who are not DSPs, but are

17      habilitation specialists and nurses, were redeployed

18      into the group homes, and were willing to do

19      whatever they could to support their brothers and

20      sisters, you know, doing the frontline work;

21      however, a lot of this increased density in the

22      homes, it increased transmission risks because

23      people were being redeployed from one place to

24      another.

25             We've seen over the last 10 years a loss of


 1      3,000 beds.  And that wait continues to increase

 2      because of staffing shortages as we speak.

 3             Everybody has heard about the nursing

 4      shortages.  And OPW is significantly impacted by

 5      their un -- inability to recruit and retain nurses.

 6             We still have not seen hazard pay for our

 7      members who have been on the front lines.

 8             There is a lot of things going on where

 9      short-staffing has increased the risks.

10             And I know I'm running out of time, but

11      I want to address one issue related to the

12      Department of Health guidelines that were issued.

13             These guidelines for returning to work after

14      a positive case allowed agencies to bring people

15      back after a much abbreviated quarantine period if

16      they wore a mask.

17             But, basically, we were bringing back

18      positive people into homes because we didn't have

19      enough staff.

20             And I would just encourage, and I thank the

21      Senate for passing Senate Bill 1765A this week,

22      which would allow -- or, engage the agency in a

23      reporting process on staffing and fills, but this

24      has to be more transparent.

25             We need to know why vacancies aren't filled,


 1      and why they're not recruiting and retaining staff.

 2             And there are reasons for this, and we need

 3      to have these conversations.

 4             So staffing is a critical need, and we look

 5      forward to partnering with all of you as we move

 6      forward.

 7             SENATOR MANNION:  Thank you, Ms. DiAntonio.

 8             Our last panelist for the topic is

 9      Peter Zummo from the New York Alliance for the

10      Developmentally Disabled.

11             PETER ZUMMO:  Thank you, Senator, for your

12      leadership in this area.

13             Being last means a lot of the good things

14      have said, so I'm justed going to speak as a father

15      and a family member.

16             I have a son, 23 years old, Andrew.  He has

17      autism.  He's low-functioning and non-verbal.  He

18      lives in a certified IRA.

19             Andrew and his three housemates require

20      24-hour care.  During COVID, the staffing of his

21      house was reduced to a barebones level because there

22      was no staffing available to fill all the positions.

23             Now that we're on the other side, staffing is

24      still reduced.  This has diminished my son's quality

25      of life.  For example, he rarely ever gets to leave


 1      the house because there's never enough staff for him

 2      to do so.  He only gets to go out when we, me or my

 3      wife, take him out.

 4             DSPs are, ultimately, what make the house

 5      work.  Without them there would be no residence for

 6      my son.

 7             The DSPs that are now working with Andrew all

 8      stayed through their jobs through the pandemic.

 9             They're dedicated, they care, but they also

10      have to earn a living and pay their bills.

11             OPWDD must provide funding to the agencies

12      that would allow them to pay the DSPs what they

13      deserve for the work they do.

14             Lack of State funding has made a DSP's wage

15      not a living wage.

16             That is no longer acceptable.

17             In addition, OPWDD has instituted cuts to

18      residential rates that will take millions of dollars

19      out of the system at the very time when millions of

20      dollars need to go into the system to provide

21      compensation for the DSPs.

22             It's actually surreal that, coming out of a

23      pandemic, with an ocean of federal dollars coming

24      into New York State, that OPWDD would cut

25      residential rates at this time.


 1             But it's not just residential.  Many day habs

 2      are also closed, or have not reopened fully, due

 3      again to a lack of staff.

 4             My son is lucky; he's in his day hab.

 5             But I personally know of one person who lives

 6      in an IRA, who has not had day hab services since

 7      March of 2020 due to staffing problems.  His IRA is

 8      provided by one agency.  His day hab is another

 9      agency.  He has received no services since March of

10      2020.  He sits, watching TV, 15 hours a day -- I'm

11      sorry -- for the last 15 months, he sits, watching

12      TV.

13             It's unacceptable.

14             Proper staffing is essential to make this

15      system work.

16             We cannot let our people down.  Our

17      population deserve to be treated with dignity and

18      respect.

19             OPWDD needs to stay, stay the course, and

20      provide the resources necessary to make this system

21      what it should be.

22             Thank you.

23             SENATOR MANNION:  Thank you, Mr. Zummo.

24             Senator Martucci.

25             SENATOR MARTUCCI:  Thanks again, Chairman.


 1             So I guess maybe the first thing I'll start

 2      off with is, the Chairman and I, I know wrote a

 3      letter together, opposing the cuts to the voluntary

 4      residential programs.

 5             So I think we certainly share the sentiment

 6      that you all have raised with respect to that issue.

 7      Certainly, now is not the time to be making cuts to

 8      these programs.

 9             So we couldn't agree more.

10             My thanks to Randy and Josh for being here.

11             And certainly, your membership, and, really,

12      the DSPs, and other service providers around our

13      state, who, again, [indiscernible] -- some of you

14      have come back from different panels, so you've

15      heard this before -- but have really filled a gap of

16      leadership that this State left, and took absolutely

17      life-saving action to make sure that things weren't

18      even worse than they are now.

19             And, lastly, you know, I only had 10 minutes

20      of questions with the Commissioner, but what was

21      certainly positive that came out of my discussion

22      with him was a willingness for he and I to sit

23      afterward.

24             And I do have tremendous concerns with

25      respect to the abbreviated quarantine period that


 1      was brought up.  I think that that certainly is a --

 2      I have tremendous questions about, you know, how

 3      that not only affects the safety of our staff, but

 4      the folks that live in these facilities.

 5             And then, lastly, I couldn't agree more with

 6      the importance of testing at this time.

 7             I know, Ms. Keegan, you talked about it,

 8      and others, how critical that is that this State

 9      step up, not only mandate it, but financially

10      support it.

11             So I look forward to continuing that

12      conversation because I too am aware of that

13      information that shows us that, from December to

14      mid-May, our fatalities tipped up by 200.

15             And during that period I was making multiple

16      requests to OPWDD about this data.  And for a large

17      portion of that time that data wasn't available.

18             So, unfortunately, it was a grim statistic

19      that confirmed for us that the problem was far from

20      behind us.

21             So you've certainly got my commitment that

22      I'll be following up with the Commissioner on that,

23      even though I did not have an opportunity to ask

24      those questions today.

25             Thank you, Chairman.


 1             SENATOR MANNION:  Thank you.

 2             Obviously, many concerning things that are

 3      coming up again, including, you know, the

 4      COVID-positive patients that were forced to return

 5      to work.  That is the extreme nature of the

 6      workforce crisis I think that we're in.

 7             And I can -- will just quickly say, to Randy

 8      and Josh also, thank you to your members for,

 9      literally, giving their lives to care for others.

10      And my best to their family members as well.

11             For the family advocates that are on here, we

12      can hear it, we can all hear it, you care about the

13      people who care for your family members.

14             I had an aunt who lived in a residential

15      facility.

16             We need to treat these people with dignity,

17      respect, and equity.

18             And I think we're all on the same page there,

19      and we're all going to make sure that we do whatever

20      we can to make sure that they are properly

21      respected, that they have that dignity.

22             And the only way to do that is to properly

23      fund it, and we're all going to push together, as

24      I know Senator Martucci agrees.

25             And the folks that I've had the pleasure of


 1      meeting, that are across the screen, are going to

 2      push with me.

 3             So thank you all for participating today.

 4             Thank you for your advocacy for the people

 5      who do the work.

 6             And thank you to the people who did the work,

 7      and who represent those.

 8             So I appreciate it.

 9             Our next panel will be on visitation.

10             Our first panelist will be BJ Stasio from

11      Self-Advocacy Association of New York.

12             BJ STASIO:  Thank you for having me back;

13      I appreciate it.

14             And while we're talking about visitation,

15      under certain circumstances during COVID-19, people

16      in certified settings were restricted in terms of

17      visitation to what they had believed as their home.

18             They were also restricted from participating

19      in their community.

20             While the Self-Advocacy Association does not

21      question the intent and importance of preserving

22      health and well-being, even lives, their

23      restrictions raised significant questions among

24      self-advocates about rights.

25             It was very difficult for people to


 1      understand why they could be told they could not

 2      have visitors or access to community when their

 3      neighbors, who did not receive services, could

 4      choose to do these things.

 5             We asked OPWDD and New York State to explore

 6      these rights-related issues that have come up --

 7      come to light in the future, to ensure the

 8      strategies to infection-control pandemic management

 9      are clearly based on a foundation of individual

10      rights, and that that foundation of any necessary

11      restrictions, should those exist, are communicated

12      clearly in a manner that afford people receiving

13      those services to understand their rights, and the

14      recourse should they not agree with any

15      restrictions, such as easy-read documents, for

16      example, in plain language.

17             And I would like to say, from my previous

18      panel, I support the point that Michael Seereiter

19      made about smaller group homes.  And if people wish

20      to live in their own setting, I would like to -- for

21      people to have the option to explore that.

22             Thank you.

23             SENATOR MANNION:  Thank you very much,

24      Mr. Stasio.



 1             And next we are back to Peter Zummo from the

 2      New York Alliance for the Developmentally Disabled.

 3             PETER ZUMMO:  Thank you again, Senator.

 4             Before I discuss the actual visitation issue,

 5      I would like to point out the effects of the

 6      long-term lockout that my son had to endure, and

 7      other residents of the system.

 8             The lockdown caused physical, medical, and

 9      psychological harm.

10             He -- my son developed aggressive behaviors

11      towards staff.  We had to adjust his medication to

12      address the issue.  He developed alopecia from the

13      stress he was under.

14             Other residents showed signs of severe

15      regression and depression.

16             I know people that were forced to miss

17      medical appointments because they were under

18      lockdown, including one person whose glaucoma went

19      untreated, and is now blind in one eye.

20             As for visitation, from March to July, my son

21      was a virtual prisoner in his house.  He was not

22      permitted to have any visitors, he was not allowed

23      to go anyplace or do anything.

24             His house is not medically fragile.  None of

25      the four residents have any comorbidities that would


 1      increase the risk of a poor outcome should they have

 2      contacted COVID.

 3             I was not allowed to see my son, even though

 4      I'm his guardian, and have the legal right and

 5      obligation to see him and check on his condition.

 6             While such a draconian lockout may have made

 7      sense in March and April, to extend the total

 8      separation of residents from their families and

 9      guardians into July and beyond was excessive and

10      unreasonable.

11             I would like to point out also that the

12      effects of COVID were different from region to

13      region in the state and in the OPWDD system.

14      Treating all the regions alike is not the right way

15      to do it.

16             I also think we need legislation passed that

17      will establish an "essential family or guardian"

18      designation, which I like to call "EFG."

19             The EFG would permit each resident, or her

20      guardian, to designate one person who will be her

21      EFG, and that EFG will be granted access to the

22      house the same as if she was a staff member.

23             This way, if there are future lockdowns, one

24      person from each family, either a guardian or a

25      family member, is designated, and can go into the


 1      house, check on their loved one's conditions, and

 2      see that they are okay or if they need anything.

 3             I think if a lockdown is necessary in the

 4      future, it should be limited in time and scope only

 5      to what is medically necessary.

 6             Locking out guardians and separating families

 7      for months at a time is not in the best interests of

 8      the residents.

 9             Thank you, Senator.

10             SENATOR MANNION:  Thank you, Mr. Zummo.

11             Next is, I would like to introduce

12      Susan Constantino of CP Unlimited.

13             SUSAN CONSTANTINO:  (No audio.)

14             SENATOR MANNION:  Susan, you're muted.

15             SUSAN CONSTANTINO:  After all this time,

16      wouldn't you think we would know enough to not be

17      muted?

18             Unbelievable.

19             I really started by saying, thank you,

20      Senator Mannion, for everything you've been doing.

21             And for you, Senator Martucci, we -- I have

22      affiliates who speak very highly of you and all of

23      what you've been doing.

24             So thank you very, very much.

25             I come here in a little different fashion,


 1      and so I'm not going to talk about what I had

 2      written to talk about.

 3             But I would really like to talk to BJ and to

 4      Peter and to other parents, because this is a

 5      provider, and our providers across the state.

 6             This was an extremely difficult time for us

 7      too.

 8             It goes back to a lot of what's been said

 9      throughout all of this hearing.

10             The first part is, that there were no clear

11      guidance that we received from OPWDD.

12             Guidance that's put in place and never taken

13      out of place, guidance that was put in for actually,

14      really, downstate, and went through the whole state,

15      is not appropriate, and we know that.

16             But we also know that, as providers, the

17      people we needed in our homes were our direct

18      support staff.  And we knew that we could not

19      control where they were, except when they were with

20      us.

21             We did not have enough PPEs in the beginning,

22      but that changed, and we eventually had enough.

23             But we couldn't control who was really

24      working with our folks.

25             And so the "lockdown," as you call it, and


 1      for us it was, really, we didn't like to think about

 2      it that way, but it appeared necessary because our

 3      goal was to keep people safe, especially as we saw

 4      our individuals go into the hospital or our

 5      individuals pass away.

 6             So that really was the reason why.

 7             But I sat in meetings with OPWDD every week

 8      for months and months, and nothing changed.  And

 9      that was wrong because we needed to have the

10      guidance changed, it needed to be looked at

11      differently.

12             But it goes back to exactly what was said on

13      the last panel:  If we would have had the

14      availability or the access of testing, where we

15      could have tested; where we could have tested our

16      staff, where we could have tested, and asked our

17      families to have these rapid tests, only those of us

18      who were lucky enough to have some kind of a

19      relationship with a PPS or with something else where

20      we were able to get the testing, that could have

21      helped.

22             So forgive us as providers that we locked you

23      out.  That was not what we really wanted to do, and

24      we needed to really have a better way to do it.

25             But also forgive us for trying to keep people


 1      safe, even though the repercussions, as you had

 2      talked about, Peter, were very great.

 3             SENATOR MANNION:  Thank you, Ms. Constantino.

 4             Our last panelist for the topic is

 5      Margaret Raustiala.

 6             MARGARET RAUSTIALA:  Senator, I'm going to

 7      make your job a little difficult because I'm a

 8      parent.  I represent Long Island Advocacy for the

 9      Developmentally Disabled, and I have a very

10      different point of view from the other parent who

11      spoke, and from the Self-Advocate.

12             March of 2020 OPWDD suspended all visitation

13      in certified residences.  It was the height of the

14      pandemic, and little was known with certainty about

15      how COVID spread, was transmitted, and how deadly

16      was the disease.

17             Given the range of vulnerabilities of the

18      people who live in certified residences, this

19      seemingly draconian suspension of all visitation, in

20      my humble opinion, was necessary.

21             Many families were understandably upset, but

22      most, most, I believe, recognized the need for

23      precautions.

24             Later, the memo suspending visitation was

25      amended to permit, but not require, providers to


 1      allow visitation outdoors with symptom checks,

 2      temperature taken, mask worn, and social distance

 3      when possible.

 4             At the time of the pandemic, my son Rico was

 5      49, and had never gone more than two weeks without

 6      visiting my husband and I in our home.

 7             Rico would not talk on the phone or use

 8      FaceTime, and we were worried that if we went to

 9      visit him in the backyard, he would want to hop in

10      the car and would wonder why he couldn't.

11             Consequently, after 49 years, we went

12      5 months, 5 months, before we saw him and could

13      bring him to our home for a visit.

14             Staff took photos and short videos of Rico so

15      that we could see how he was adjusting to his new

16      life.

17             Words cannot express the gratification that

18      I feel.  This was a difficult time.

19             Some families were angered by the visitation

20      policy.  They believed that if the staff went out in

21      and out of the group home, why not families?

22             At the time, at the beginning of the

23      pandemic, Leanne took the position that, while

24      separation of residence from their loved ones can

25      cause significant stress and anxiety, as one of the


 1      parents pointed out, it was necessary because the

 2      staff was needed.  It required staff to go in and

 3      out.  We don't require families to go in and out.

 4             So as hard as it was, and as difficult as it

 5      was, it was the right thing to do.

 6             As more was learned about the transmission of

 7      the virus, OPWDD recognized that new strategies were

 8      needed, going forward, and to extend the opportunity

 9      to visit residents in certified facilitates.

10             Eventually, protocols were in place to permit

11      indoor visits by persons 18 years or older.  These

12      included, again, symptom, temperature checks,

13      guidance, as to where in the home the visit could

14      ideally take place, and requirements for

15      mask-wearing, and as someone pointed out, social

16      distancing, which is often very, very difficult, if

17      not impossible, to achieve.

18             Since there was increasing evidence that the

19      transmission of the virus outdoors was difficult,

20      given its airborne nature, many agencies strongly

21      encouraged people to come visit their child in the

22      backyard, weather permitting.

23             The U.S. has now reached a new milestone,

24      with the number of Americans who are fully

25      vaccinated reaching 41.4 percent, as of the CDC


 1      yesterday.

 2             It was more -- the CDC has, like, come out

 3      with different guidance that's more stringent than

 4      the general public, but gives more flexibility.

 5             Governor Cuomo recently announced that more

 6      than 60 percent of adult residents in New York State

 7      have had at least one dose of vaccine, and more than

 8      50 percent of the adults are fully vaccinated.

 9             In this case, we are pleased that visitation

10      has become much more loosened up, and especially for

11      those individuals where the resident and the person

12      visiting them are both fully vaccinated, and the

13      visitation takes places in the resident's bedroom or

14      in a designated area away from other people.

15             We think that this is a very reasonable step.

16             And we hope that, as time goes on, and more

17      is learned, and, eventually, more and more people

18      are fully vaccinated, that the government will --

19      New York State government will continue to follow

20      science, and make decisions based on the science

21      that the CDC is coming forth with.

22             Thank you.

23             SENATOR MANNION:  Thank you, Margaret.

24             All of that commentary was very powerful, and

25      I can only imagine the range of emotions that your


 1      family members and yourselves felt.

 2             Well, just one quick comment, and then a

 3      quick question.

 4             But, Peter, my comment is, that I think your

 5      idea is a fantastic one, and absolutely necessary.

 6             And, hopefully, you know, we can -- our

 7      office can engage with you to talk a little bit more

 8      about that.  But your EFG idea is a -- I'm a fan of,

 9      and it's absolutely necessary.

10             And, just, if there's any blessings that come

11      out of this, I think that that, making that change,

12      so that we can make sure that we have access to our

13      family members, is important.

14             And I've heard this over the course of almost

15      a year and a half how necessary that is.

16             Peter, you were going to say something,

17      I think?

18             PETER ZUMMO:  Yes.  Thank you, Senator.

19             I appreciate your support in this.  And,

20      NYADD, we're 6,000 people strong throughout

21      New York State.  We're -- we'll be happy to work

22      with you and your colleagues, and get this EFG

23      legislation passed.

24             And I think it's a very good thing that is

25      really needed in the system.


 1             Thank you.

 2             SENATOR MANNION:  And then my last question,

 3      and I think some of the family members and advocates

 4      alluded to this, but, you know, were there any

 5      options --

 6             I think, Margaret, you had mentioned this.

 7             -- but any options that really were very good

 8      options, and, obviously, that was restricted at

 9      certain times --

10             You had talked about your -- the backyard

11      visit.

12             -- but that were provided to residents to

13      keep in touch that you found to be, you know, on par

14      with, or close to, in-person interactions?

15             MARGARET RAUSTIALA:  As I said, once again,

16      the DSPs came through.  They understood, and they

17      would take photographs of Rico, or short videos, and

18      send them to me, on their own.  The DSPs really

19      understood that we couldn't see him, and that this

20      was the best thing in our family's case.

21             And to go back to the proposal that was made

22      in terms of one person being permitted to visit,

23      I still think that testing is going to be the key.

24      I mean, we need -- we can't have -- I don't care who

25      you are, we need now with testing, so that the


 1      people we know who are getting together are free of

 2      COVID, or have been fully vaccinated and have that

 3      Excelsior pass.

 4             SENATOR MANNION:  I think we agree.

 5      Absolutely.

 6             Thank you, Margaret.

 7             Any other comments from anyone?

 8             Thank you again, for the panelists, for

 9      sharing your story.  And, again, I use the word

10      "powerful," but it was powerful.

11             Thank you, again; I appreciate it.

12             Our next panel is on vaccination, and our

13      first panelist is Susan Constantino from

14      CP Unlimited.

15             SUSAN CONSTANTINO:  I'm unmuted this time,

16      I'm happy to say, having thought about it.

17             Well, I really want to thank the people who

18      organized this because they gave me the happy thing

19      to talk about, which is vaccinations.

20             And I would like to talk a little bit about,

21      number one, thanking everyone, the Legislature, as

22      well as, I believe, OPWDD, certainly NYDA, and all

23      of us who advocated, that our individuals who live

24      in certified residential programs were part of the

25      1A grouping, and that we were able to be in the


 1      first group to get them vaccinated.

 2             I think it was also important that our staff

 3      were in that group, and that made a big difference.

 4             Even though we have not been very successful

 5      in getting our staff to accept being vaccinated, I

 6      do think that having them be in the first group,

 7      having it be easier for them to be able to do, and

 8      having them be able to observe our individuals

 9      receive the vaccine, was really important.

10             And we continue to try to keep encouraging

11      that kind of behavior for them, that they would get

12      vaccinated.

13             I do want to say that OPWDD required a very

14      stringent data collection system on the

15      vaccinations.

16             And in the very beginning, staff who really

17      were -- who did not have the time and were unable to

18      do this, we're really asked to report on

19      vaccinations every single day.  And we were -- it

20      was overwhelming.

21             And so we worked with OPWDD, and we were able

22      to -- or, a small group of us work with them in

23      order to get that changed so it became at least

24      weekly.

25             It's redundant.  It doesn't really give us


 1      what it needs because it's aggregate.  It doesn't

 2      give us, like, in which areas are there particular

 3      issues about trying to get people vaccinated.

 4             But at least it is data that we've got that

 5      we can look at.

 6             But I think what was most important, and

 7      I think it's really important to give credit where

 8      it was due, the local health departments, once --

 9      during the very beginning of COVID, when they didn't

10      recognize us, they didn't know that the Office of

11      Emergency Management didn't realize they were

12      supposed to support us or help us, but once they

13      learned that, and through the Governor's office, we

14      actually got acquainted with many of them,

15      particularly in New York City, they were magnificent

16      in the vaccination part.

17             They really helped us to find the places

18      where we would go.

19             They helped us to support smaller agencies so

20      that everyone had a place to go.

21             They were -- we could call them and say,

22      "This clinic needs 200 doses on this day," and it

23      would be there.

24             So between the FQHCs and the long-term care

25      pharmacies, and some other OPWDD providers that said


 1      I'll have it in my own place, I think that there was

 2      a concerted effort, and it was an effort that

 3      succeeded, based on the fact that we have so many

 4      folks vaccinated.

 5             My only comment -- last comment is just that,

 6      now we need to find ways to get our staff

 7      vaccinated.

 8             We need support.

 9             We don't have clear guidance on exactly what

10      we can say or what we can't say, and that's not just

11      OPWDD.  I think it's everyone now looking at this.

12             But the day that we're able to say that it's

13      required, and that we must -- that staff must be

14      vaccinated will be the day we can all start to feel

15      a little bit more comfortable.

16             Thank you.

17             SENATOR MANNION:  Thank you, Susan.

18             The last panelist for this topic is

19      Yvette Watts from New York Association of Emerging

20      and Multicultural Providers, Incorporated.

21             YVETTE WATTS:  Thank you,

22      Senator Manning [sic] for this opportunity to speak

23      again on this very sensitive topic.

24             First I want to thank my colleague

25      Susan Constantino.


 1             She, along with her large agency,

 2      demonstrated that networking and shared resources

 3      amongst providers is our greatest resource.

 4             As she mentioned, in the beginning, there was

 5      a disconnect.

 6             And we did get into the "A" category, but

 7      prior to that there was a lack of communication.

 8             I know many of my small and midsize providers

 9      were at a loss.  And families were contacting them,

10      and they had nowhere -- where to go, what to do,

11      were they even counted in this A1 category.

12             So once Susan connected us with the local

13      DOH, we were able to work along with her to make a

14      lot of those pop-up sites available, and to really

15      find out what needs those agencies had.

16             Thank you so much, Susan.  You know, I love

17      following you on any kind of a forum.

18             I just want to say that, right now, the

19      problem that we have, is the hesitancy rate is very

20      high amongst the staff, and especially people of

21      Black and Brown culture.  And that has a lot to do

22      with historic cultural concerns, but it also has to

23      do, and I have to say this, I mentioned it

24      yesterday, it's the lack of equity in compensation,

25      the lack of trust.


 1             These individuals do not -- I mean, now I'm

 2      talking as a mother of a 36-year-old female with

 3      autism.

 4             And I hear them say, How can I trust someone

 5      that doesn't even care what I do, doesn't even care

 6      that can I pay my bills?

 7             These individuals -- and then, you know, you

 8      talk about the day we will be able to do mandatory

 9      testing.  Until we build that trust up, that's not

10      going to work, because many of them feel, and they

11      said it to me, that why should I trust someone to

12      vaccinate me when they can't even compensate me or

13      understand that what I do is important?  I take care

14      of individuals, but I want to be here.  But that

15      I can't -- that I don't feel like an essential

16      worker.  I feel like I am being abused.

17             And that's the way they feel.

18             I think that Michael Seereiter, another

19      colleague, he was so eloquent in stating what he

20      feels about the disparagy [ph.] and the lack of

21      equity for our workers.

22             So as I said before, this is a circle of --

23      and once there's a piece that's not connected, if we

24      don't -- we need those individuals, yes, to be

25      vaccinated, but you cannot mandate individuals that


 1      don't even want to work with you anymore.

 2             It's very simple.

 3             And I think that it's appropriate that we had

 4      the forum yesterday, and now we have this forum in

 5      which -- the platform in which to talk about what we

 6      need to do, moving forward.

 7             So thank you, Senator, for this opportunity

 8      to speak.

 9             SENATOR MANNION:  Thank you.

10             Yes, and thank you for sharing.

11             And, you know, I'm almost embarrassed by the

12      questions that I would have asked, because I know

13      the -- you know, this is not about procedure, this

14      is not about logistics.  It's a much, much bigger,

15      and more sensitive, picture than that.

16             And I appreciate both of you sharing that

17      information.

18             I don't have any questions because I don't

19      think we're going to have an answer.

20             So we do understand the importance of it, and

21      I do hear resonating as it regards to testing, which

22      has come up -- came up several times.

23             And, of course, we want people to be

24      vaccinated, but we also want them healthy as they're

25      working with others, and we want to help in building


 1      a more trustworthy environment, yes.

 2             YVETTE WATTS:  Thank you.

 3             SENATOR MANNION:  Thank you.

 4             Our next panel is fiscal impact and other

 5      challenges.

 6             Our first panelist is Kathy Bunce from

 7      State-Wide Family Advocacy Network of New York.

 8             KATHY BUNCE:  (No audio.)

 9             SENATOR MANNION:  Kathy, you are muted.

10             KATHY BUNCE:  I'm sorry.  I should know by

11      now.

12             The COVID shined a very bright light on a

13      very fragile system.

14             For years family stakeholders have been

15      sounding the alarm, and asking for investment in the

16      workforce we desperately need.  We have asked

17      repeatedly, the services delivered through OPWDD is

18      fully and fairly funded.

19             I know you've heard those words from us

20      before.

21             The increased minimum wage, along with a

22      decade of -- without a meaningful COLA -- there was

23      a very, very small one, one year -- has nonprofit

24      agencies at a huge disadvantage.

25             And as a parent I can tell you, I know,


 1      shifts are long, pay is low, the work is hard, and

 2      overtime is frequent.

 3             And then comes COVID, and it was the perfect

 4      storm; there were no services.

 5             We were told by OPWDD that we may never get

 6      back to level of services, and families really were

 7      left to fend for themselves.

 8             Now, our family, we were lucky.  We were

 9      healthy.  I have a husband who shared in the

10      caregiver responsibilities.

11             And not everyone in the state has that

12      option.

13             Without this workforce we have no future.

14             Without a capacity of caring DSPs, we will be

15      returning to the days of institutionalization

16      because families simply will not live forever.

17             My daughter attends a day program only

18      three days a week because they don't have sufficient

19      staff, but there is not one single staff member

20      working there today that was there pre-COVID.

21             She was given priority because she's still

22      living at home.  So my husband will have -- when my

23      husband has to return to work, we're really not sure

24      what we're going to do.

25             Her certified group home is scheduled to open


 1      at the end of the month.  The opening date is

 2      contingent on finding staff.

 3             Families are literally going door to door,

 4      handing out flyers, looking for people.

 5             That should not be.

 6             That should not be.

 7             Other families are working shifts in the

 8      noncertified homes to cover the care and safety of

 9      their loved ones.

10             So in January there were 2300 open positions

11      in our region.  Now we have over 3300.

12             We need a sustainable system for our loved

13      ones, going forward.

14             We need to stop these crazy 5-1 cuts.

15             We need to raise the wage because DSPs

16      deserve to make a living wage.  10 years ago their

17      starting pay was 35 percent above minimum wage.

18             There's been minimal investment in the most

19      important workforce infrastructure to so many

20      people; 130,000 people.

21             Now is the time.

22             They should be considered essential workers

23      because they are essential workers.  They're

24      essential to my daughter, they're essential to my

25      family, and to every other family member who has


 1      ever had -- had to rely on services, at no fault of

 2      their own, by the way.

 3             We need to fund the future.

 4             We need to use those federal FMAP monies, and

 5      we need them to flow very quickly to the nonprofits

 6      to stop the bleeding.

 7             These nonprofits are in a dangerous fiscal

 8      position.  They serve 80 percent of the people and

 9      simply cannot fail.  We simply cannot afford to lose

10      one person from this system at any level.

11             We need immediate action to address the

12      submarket wages, we need proactive planning and

13      forecasting of future need, and we need to have a

14      robust sustainable future for our children.

15             Thank you.

16             SENATOR MANNION:  Thank you.

17             Next is Karen Nagy from Eastern New York

18      Developmental Disabilities Advocates.

19             KAREN NAGY:  Thank you, Senator, and

20      committee members.

21             I'm following Kathy's lovely testimony, and

22      it occurs to me, over all of these forums, that we

23      keep hammering home the same points.

24             So I'm not going to -- I'm going to adjust

25      again, and I'm not going to hammer home anything


 1      that hasn't already been hammered home.

 2             But I can say with unequivocal certainty that

 3      our provider, our nonprofit provider, kept our son

 4      and everyone else they served safe.

 5             And we face an incredible staffing shortage

 6      at this moment due to burn-out, and the significant

 7      overtime pressures, that have occurred for our

 8      remaining staff.

 9             So there's really a two-pronged problem here.

10             We have remaining staff that's burnt out, and

11      just exhausted, from all of this care.  And then we

12      will have new staff coming in that we will need to

13      train and spend money on.

14             So at a time when people with IDD, and

15      especially like my son with profound autism, who

16      doesn't do well with change, they have experienced

17      significant regression, and they'll be adjusting to

18      reopening full in-person services, environmental

19      stressors.

20             I mean, many of us without disabilities are

21      understanding the differences in our lives that have

22      contributed to stressors that have driven to make

23      different decisions after this pandemic.

24             So, you know, our staff is emotionally

25      drained, burned out.  We've lost many of them


 1      already, and we're at risk of losing more.

 2             So, essentially, our workforce is in crisis,

 3      and it has been in crisis.

 4             And it's just -- you know, it's not

 5      acceptable that we don't acknowledge that, without

 6      it, the system, and all of the administrative costs

 7      that support it, are worthless.

 8             So, you know, obviously, the additional

 9      FMAT dollars have to be -- that have been generated

10      by the federal government are going to have to be

11      used to stabilize the ongoing workforce crisis, or

12      nothing else will matter.

13             We're going to spend a lot of money in

14      training a large percentage of new staff.

15             We're going to spend a lot of money because,

16      every time there's staff turnover, there are,

17      essentially, additional behavioral incidents that

18      have to be addressed, and incidents that have to be,

19      you know, researched, and administrative procedures

20      behind those incidents that have to occur.

21             And the recruitment and retention challenges

22      are going to continue because of the low wages.

23      They're not competitive in any way and they're not

24      commensurate with the difficult work and

25      responsibility that the job entails.


 1             So I will close by saying, finally, you know,

 2      homes for individuals with IDD cannot be viewed as

 3      beds to fill.

 4             They have to be viewed as holistic

 5      environments that subort [ph.] the adaptations and

 6      the necessary supports that ensure each individual's

 7      human right to quality of care.

 8             And while we certainly appreciate the delay

 9      of the 5-1 cuts that you're hearing about through

10      the pandemic, we strongly oppose them, and they're

11      completely contrary to ensuring the human rights of

12      individuals with IDD, and they're being proposed at

13      a time when the system of care itself is at risk and

14      incredibly vulnerable.

15             So, Senator Mannion, we thank you for

16      sponsoring the legislation that will address this,

17      and we thank you for everything that you have done,

18      you know, on our behalf to date.

19             SENATOR MANNION:  Thank you, Karen.

20             Competitive and commensurate, and

21      I completely agree, and goes way beyond that.

22             Thank you for sharing.

23             Next, we are back to Tom McAlvanah from

24      New York Disability Advocates, and Interagency

25      Council of Developmental Disabilities.


 1             TOM McALVANAH:  Thanks again, Senators;

 2      appreciate it.

 3             Critical services for people with

 4      intellectual and developmental disabilities are at

 5      risk.

 6             While some of the planned cuts have been

 7      rolled back, and the first meaningful cost-of-living

 8      increase since 2009 was recently passed, people and

 9      families are still at risk of losing access to their

10      current levels of services and supports.

11             Why?

12             Well, I think it was mentioned by Kathy that

13      over the past decade, the not-for-profit agencies

14      have been asked to do more with fewer resources.

15             The continued deferral of the statutory COLA

16      for over a decade has significantly deprived

17      providers of vital resources needed to maintain

18      operations.

19             As a result, we don't have a staffing crisis;

20      we have an impending staff disaster.

21             Right now executive directors are about to

22      cover vacant shifts because they don't have enough

23      staff in their residences.

24             One exec told me that he's going to provide

25      direct care because he's got to get his staff on


 1      vacations this summer.

 2             Prior to the COVID pandemic, 37 percent of

 3      providers reported losing money on their OPWDD

 4      services.

 5             Cash on hand has been a significant challenge

 6      for agencies, where 50 percent of providers had less

 7      than 40 days of cash on hand, and one-third had less

 8      than 30 days of cash on hand.

 9             That's two payrolls.

10             And more than one in three already closed,

11      reduced, or modified programs due to the financial

12      hardship they were under, and that will grow.

13             Of course, folks mentioned the 5-1 cuts, and

14      I won't go too much into it, but this action that

15      will -- is taking place may [indiscernible], or have

16      taken place, will now remove more than $230 million

17      annually from providers already besieged with the

18      losses and added expenses due to the pandemic.

19             Of course, OPWDD claims that residential

20      providers' costs are reduced when their residents

21      are temporarily away from home.

22             We know that not to be true.  It doesn't

23      change one bit our fixed costs, and paying the staff

24      is still there.

25             So we know that these cuts come at a


 1      difficult time, and also gives the impossible choice

 2      to families to say, take their children home for a

 3      visit and cost the residential provider half their

 4      daily rate.

 5             Where was the 6.2 percent FMAT fund that all

 6      Medicaid services throughout this country, including

 7      New York State and OPWDD, that they earned, where

 8      was 6.2?  Where did that money go?

 9             The value of the increased income to

10      New York State in the IDD sector, not-for-profit

11      sector only, was over $50 million a quarter.

12             These dollars certainly could have addressed

13      the shortfalls that OPWDD claims necessitated their

14      actions.

15             So, finally, I just want to say that, you

16      know, our not-for-profit provider community carries

17      out the state's moral and legal obligation to

18      provide services and supports to New York's most

19      vulnerable citizens.

20             Why does New York State continue to look to

21      the not-for-profit sector to fix their cash flow

22      needs?

23             This pandemic should not be an opportunity to

24      shrink the service system because there's little

25      desire to put more resources into the sector.


 1             If you look at OPWDD's website, there are

 2      39,000 young people under the age of 20 that are

 3      provided services.

 4             39,000 out of 128.

 5             What's the future for them going to be if

 6      we're going to continue to shrink the footprint and

 7      financial resources that OPWDD is struggling to

 8      provide?

 9             We need to start investing in this service

10      sector now while we still have a viable one.

11             Thank you.

12             SENATOR MANNION:  Thank you, Tom.

13             I appreciate the numbers, and I think there's

14      certainly, again, consensus and agreement that we

15      are at a breaking point, and we're holding on by a

16      thread.

17             And I appreciate everything that the

18      providers are doing to make sure that we continue to

19      provide the services.

20             Next, I would like to introduce Gail Hamlin

21      from New York Alliance for the Developmentally

22      Disabled.

23             GAIL HAMLIN:  Hi, good afternoon.

24             Thank you, Senator Mannion, and committee

25      members, for the opportunity to speak at today's


 1      roundtable.

 2             And one of the disadvantages of speaking at

 3      the end is everybody has already said so many of the

 4      things that were so important, and things that I was

 5      going to touch upon.  So forgive me if I repeat some

 6      of these things.

 7             I am on the executive council for regional

 8      leads with NYADD.

 9             I'm also the legal guardian for my older

10      brother who lives in a group home residence on

11      Long Island.

12             The past 15 months with COVID have certainly

13      been an eye-opener, and it's also been a very big

14      learning experience.

15             So the biggest issue that his agency, and

16      I know others have right now, very much related to

17      5-1 cuts, their therapeutic leave, retainer day, and

18      vacancy adjustment.

19             Obviously, I don't want to get too much into

20      detail about it, but it's impossible to budget for

21      these things because we never know when someone is

22      going to need to go to the hospital.  Right?

23             And families want to see their loved ones,

24      they want to bring them home for weekends, these are

25      things that are part of their therapeutic care.


 1             The agency, again, can't budget for it, but

 2      they shouldn't be penalized for it as well.  Right?

 3             Time with family is part of their therapeutic

 4      care, and family is part of their essential network.

 5             We cannot see more cuts.  We need far better

 6      funding for this.

 7             Another issue, again, everyone's been talking

 8      about it, and Karen and Kathy really touched the

 9      nail on the head and said it very eloquently, but

10      wages are a huge issue, so I'm going to say it

11      again.

12             But, Commissioner Kastner, his words, he

13      said, quote, he was immeasurably grateful, unquote,

14      for the DSPs, for their dedication to our people's

15      health and well-being.

16             But how can we convert that sentiment into

17      increased pay for the tireless work and efforts for

18      all that the DSPs do?

19             They deserve better pay commensurate with

20      their work.

21             So there can't be employer retention without

22      the pay to go along with it.

23             And I see that my time is up, so I am going

24      to say thank you for your time.

25             Thank you.


 1             SENATOR MANNION:  Thank you, Gail.

 2             We are not going to have staff available if

 3      we don't properly compensate them.  And we have to

 4      provide the providers with those dollars, and then

 5      they can provide people with a decent and living

 6      wage and -- for this delicate care that they

 7      provide.

 8             So, thank you, Gail, for your words.

 9             You are our last panelist.

10             Senator Martucci or Senator Persaud, if you

11      have any final thoughts, I certainly would like to

12      give you the opportunity before I have my final

13      words.

14             It's been an important, and good three hours,

15      a necessary three hours, maybe a long three hours.

16             But, regardless, I think important things

17      came out as it related to the pandemic, and what we

18      all also know, which are other crises, particularly

19      one related to workforce that we have to address.

20             Senator Martucci?

21             SENATOR MARTUCCI:  Thank you, Chairman.

22             So first I'll start by thanking you again for

23      putting this together.

24             Certainly, you know, it's -- I'm glad that we

25      had this opportunity, and certainly glad that


 1      Dr. Kastner has availed himself in the future.

 2      I look forward to continuing conversations with him.

 3             And I just want to take this moment for all

 4      of you who took the time -- part of the time out of

 5      your day to come here and give all of us some really

 6      important perspective on issues that certainly are

 7      very important to us.

 8             You know, again, your perspective is

 9      invaluable in terms of shaping -- shaping, you know,

10      our thoughts and our actions as we move forward.

11             So I will just end by saying thank you for

12      your time today.

13             And I continue to look forward to working

14      with Chairman Mannion and the other members of

15      the committee to do all we can for the benefit of

16      IDD New Yorkers.

17             Thanks so much.

18             SENATOR MANNION:  Thank you,

19      Senator Martucci.

20             And I thank Senator Felder for his

21      attendance.  He had to leave.

22             And, of course, thank you, Senator Persaud,

23      as you were here throughout all of it, you heard all

24      of it.  I appreciate that.

25             And if you have any final thoughts, I would


 1      like to make sure that you have that platform.

 2             SENATOR PERSAUD:  Well, thank you, Chairman.

 3             I would just really like to thank you for

 4      putting this together.

 5             I know we had a struggle last week.  And, you

 6      know, this was worth it for everyone to reconvene

 7      and to hear everything everyone said.

 8             You know, Senator Mannion and I had a

 9      conversation with the Commissioner about a week ago

10      because of something I was not pleased with.

11             And, you know, we are dedicated to fighting

12      for the IDD population.

13             I have my -- I tell the story all along:

14             I grew up with a friend of ours who was

15      developmentally disabled.  And -- but, let me tell

16      you, he was the smartest person amongst all of us.

17             You know, he was a little older than us, but

18      he was the smartest one amongst all of us.  And we

19      involved him in everything that we did.  He was

20      never excluded, on to today, he has never been

21      excluded from anything.

22             And my mother worked in the industry for

23      nearly 40 years.

24             And now my youngest brother has decided, you

25      know, he left his job he was doing and he's decided


 1      that this is his passion.  And so he's currently

 2      working on a new home that was just opened on

 3      Long Island, and he just loves it.

 4             So it's a field that I'm passionate about,

 5      and, you know, there's some legislation.

 6             While we're on, someone saw it, and they

 7      called the office and said, Oh, make sure she signs

 8      on to one of Senator Mannion's pieces of

 9      legislation.

10             And I said, Don't worry.  I will look at it,

11      and then I'll make the decision.

12             So, again, thank you, Senator Mannion, for

13      everything that you're doing.

14             And to all of you advocates, thank you for

15      everything that you are doing.

16             And we're committed to working with you to

17      ensure that the industry gets what they deserve.

18             That's what we're committed to doing.

19             So thank you again, everyone.

20             SENATOR MANNION:  100 percent.

21             You know, the pandemic clearly highlighted

22      the need for the State to invest in the services.

23             Residents went without the services that they

24      needed.

25             Providers across the state had to absorb the


 1      costs.

 2             DSPs had to work overtime, many times without

 3      hazard pay, without being tested, sometimes being

 4      COVID-positive, sometimes without proper protection.

 5             And we all know that we can do better; we can

 6      do better for the people that provide the service,

 7      and we can do better for the people that need the

 8      service.

 9             This past budget is, hopefully, the first of

10      many steps to show that the IDD community is a

11      priority just as the other senators and providers

12      and advocates said as we met here today.

13             I look forward to continuing the work with

14      stakeholders that were good enough to come today,

15      and the many more advocates that were out there

16      enjoyed us via live stream.

17             This is going to conclude our roundtable of

18      evaluating OPWDD's response to COVID-19 at

19      residential facilities, but we did much more, and

20      we're going to continue to do more.

21             This is one step in the right direction.

22             Thank you to the panelists; the Commissioner;

23      and, of course, my ranking member, Senator Martucci;

24      Senator Persaud for joining me today; and

25      Senator Felder who joined me earlier.


 1             Thank you again, everyone, for taking the

 2      time.

 3             We will all push together in our fight to

 4      make sure, and I'm stealing Senator Persaud's words,

 5      that everyone is included in every scenario, and

 6      that no one has to be forced to overcome barriers

 7      that we can't make sure that they can be overcome.

 8             So thank you for joining, everyone, today.


10                (Whereupon, the roundtable held before the

11        New York State Senate Standing Committee on

12        Disabilities concluded, and adjourned.)


14                            --oOo--