S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                  6767

                            I N  S E N A T E

                            February 18, 2016
                               ___________

Introduced  by Sens. HANNON, ORTT -- read twice and ordered printed, and
  when printed to be committed to the Committee on Health

AN ACT to amend the public health law, in relation to enacting the "fair
  access to individualized residences (FAIR) act"

  THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND  ASSEM-
BLY, DO ENACT AS FOLLOWS:

  Section  1. Legislative intent. The legislature hereby finds that many
parents and family members of  developmentally  disabled  children  have
cared  for  their  loved  ones  for decades and now many of these family
caregivers are elderly with their own age related disabilities. Increas-
ingly, they can no longer manage the challenge of caring  for  an  adult
child  who  may  have significant and challenging emotional and physical
needs. In fact, estimates are that approximately 25% of  developmentally
disabled  New  Yorkers,  or  approximately 50,000 individuals, live with
family caregivers who are over the age of 60.  Many of these adult chil-
dren need or will soon need  out  of  home  residential  placements  for
living  situations  which are increasingly untenable. This situation has
reached crisis proportions. Complicating matters is the fact that  there
is  a  shortage  of residential placements and the process for providing
those placements to those most in need is not transparent, consistent or
uniform across the state. Residential  placements  are  not  necessarily
allocated  based on need. Nor does such allocation take into account the
viability of an individual's current residential situation or any recog-
nition of the long-standing contribution and sacrifice family caregivers
have made caring for their loved ones at home at considerable savings to
the state. Instead, placements are often allocated based on an  individ-
ual's  designation  as  a member of a particular class or "special popu-
lation" of people with developmental disabilities.
  Therefore, the state must develop and implement  a  clear,  consistent
and  uniform  policy for ensuring that placements go to individuals most
in need. This must include recognition of the viability of  an  individ-
ual's  living situation with a family caregiver as well as the sacrifice
that many of these caregivers have made for years or even decades. Fami-
lies must regain the confidence that the means will exist so that  their

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
              

                                                           LBD14046-03-6

S. 6767                             2

children will receive care even when they can no longer provide it.  The
legislature  finds  that  the  adoption of this act is an important step
toward making this commitment a reality.
  S  2.  Short  title.  This  act shall be known and may be cited as the
"fair access to individualized residences (FAIR) act".
  S 3. The public health law is amended by adding a new section 207-a to
read as follows:
  S 207-A. PRIORITY PLACEMENT PROCESS FOR CERTAIN DEVELOPMENTALLY  DISA-
BLED  PERSONS.  THE  COMMISSIONER  AND THE COMMISSIONER OF DEVELOPMENTAL
DISABILITIES SHALL, IN COOPERATION WITH  INTERESTED  PARTIES  INCLUDING,
BUT  NOT LIMITED TO, FAMILY MEMBERS, SELF-ADVOCATES, PROVIDERS AND STATE
OFFICIALS, DEVELOP A STATEWIDE,  UNIFORM  AND  TRANSPARENT  PROCESS  FOR
ASSIGNING OUT OF HOME RESIDENTIAL PLACEMENTS OF DEVELOPMENTALLY DISABLED
PERSONS  ON  A  PRIORITY  BASIS. THE PROCESS SHALL INCLUDE THE FOLLOWING
CRITERIA:
  1. THE EXTENT OF AN INDIVIDUAL'S DISABILITY AS MEASURED BY  A  UNIFORM
AND RECOGNIZED ASSESSMENT METHODOLOGY;
  2.  THE  NATURE  OF THE INDIVIDUAL'S LIVING SITUATION WHICH SHALL TAKE
INTO ACCOUNT THE AGE AND HEALTH OF FAMILY  CAREGIVERS,  THE  ABILITY  OF
FAMILY CAREGIVERS TO CONTINUE TO PROVIDE CARE, THE LENGTH OF TIME FAMILY
CAREGIVERS HAVE CARED FOR THE INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES
AT  HOME,  THE INABILITY OF FAMILY CAREGIVERS TO MANAGE THE INDIVIDUAL'S
NEEDS, INCLUDING BEHAVIORAL NEEDS, THE LIKELIHOOD THE FAMILY  CAREGIVERS
WILL  OR MUST ALTER THEIR LIVING SITUATION SO THAT CONTINUING CARE IS NO
LONGER PRACTICAL, AND OTHER FACTORS RELATING TO THE  ABILITY  OF  FAMILY
CAREGIVERS TO CONTINUE TO PROVIDE CARE; AND
  3.  WHETHER  AN  INDIVIDUAL IS CATEGORIZED FOR PLACEMENT PURPOSES AS A
PRIORITY ONE INDIVIDUAL AS DEFINED IN THE  STATE'S  HOME  AND  COMMUNITY
BASED  SERVICES WAIVER APPLICATION.  INDIVIDUALS SHALL NOT AUTOMATICALLY
BE DESIGNATED PRIORITY ONE BASED SOLELY ON  THEIR  STATUS  AS  A  PERSON
BELONGING TO A "SPECIAL POPULATION." HOWEVER, IN THE EVENT THAT A DEVEL-
OPMENTAL  DISABILITIES  REGIONAL  OFFICE  HAS  DETERMINED  THAT A PERSON
DESIGNATED AS A MEMBER OF A "SPECIAL POPULATION," AND THAT  SUCH  PERSON
MEETS  THE  CRITERIA  FOR PRIORITY ONE, AND THAT AN EMERGENCY EXISTS, AS
DEFINED BY SUCH WAIVER; THE DEVELOPMENTAL DISABILITIES  REGIONAL  OFFICE
MAY  MAKE  A REFERRAL TO A PROVIDER FOR AN EVALUATION AND PLACEMENT. THE
DEPARTMENT, IN CONSULTATION WITH THE OFFICE  FOR  PEOPLE  WITH  DEVELOP-
MENTAL  DISABILITIES, SHALL SEEK ANY NECESSARY AMENDMENTS TO THE STATE'S
HOME AND COMMUNITY BASED SERVICES WAIVER APPLICATION TO  EFFECTUATE  THE
PURPOSES OF THIS SECTION.
  S  4. The commissioner of health and the commissioner of developmental
disabilities shall implement the provisions of this act within 120  days
of the effective date thereof.
  S 5. This act shall take effect immediately.

                            
                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                 6767--A
    Cal. No. 673

                            I N  S E N A T E

                            February 18, 2016
                               ___________

Introduced  by  Sens.  HANNON,  ORTT,  MURPHY  -- read twice and ordered
  printed, and when printed to be committed to the Committee  on  Health
  -- reported favorably from said committee, ordered to first and second
  report,  ordered  to  a  third reading, amended and ordered reprinted,
  retaining its place in the order of third reading

AN ACT to amend the mental hygiene law,  in  relation  to  enacting  the
  "fair access to individualized residences (FAIR) act"

  THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
BLY, DO ENACT AS FOLLOWS:

  Section 1. Legislative intent. The legislature hereby finds that  many
parents  and  family  members  of developmentally disabled children have
cared for their loved ones for decades and  now  many  of  these  family
caregivers are elderly with their own age related disabilities. Increas-
ingly,  they  can  no longer manage the challenge of caring for an adult
child who may have significant and challenging  emotional  and  physical
needs.  In fact, estimates are that approximately 25% of developmentally
disabled New Yorkers, or approximately  50,000  individuals,  live  with
family caregivers who are over the age of 60.  Many of these adult chil-
dren  need  or  will  soon  need  out of home residential placements for
living situations which are increasingly untenable. This  situation  has
reached  crisis proportions. Complicating matters is the fact that there
is a shortage of residential placements and the  process  for  providing
those placements to those most in need is not transparent, consistent or
uniform  across  the  state.  Residential placements are not necessarily
allocated based on need. Nor does such allocation take into account  the
viability of an individual's current residential situation or any recog-
nition of the long-standing contribution and sacrifice family caregivers
have made caring for their loved ones at home at considerable savings to
the  state. Instead, placements are often allocated based on an individ-
ual's designation as a member of a particular class  or  "special  popu-
lation" of people with developmental disabilities.
  Therefore, the state must develop and implement a caregiver assessment
for  ensuring  that placements go to individuals most in need. This must
include recognition of the viability of an individual's living situation

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
              

                      [ ] is old law to be omitted.
                                                           LBD14046-04-6

S. 6767--A                          2

with a family caregiver as well as the  sacrifice  that  many  of  these
caregivers have made for years or even decades. Families must regain the
confidence that the means will exist so that their children will receive
care  even  when  they  can no longer provide it.  The legislature finds
that the adoption of this act is an important step  toward  making  this
commitment a reality.
  S  2.  Short  title.  This  act shall be known and may be cited as the
"fair access to individualized residences (FAIR) act".
  S 3.  The mental hygiene law is amended by adding a new section  41.59
to read as follows:
S 41.59 FAMILY CAREGIVER ASSESSMENTS.
  1.  FOR  INDIVIDUALS  WITH DEVELOPMENTAL DISABILITIES WHO LIVE AT HOME
AND WHO ARE ON A WAITING LIST FOR OUT OF HOME RESIDENTIAL SERVICES MAIN-
TAINED BY THE OFFICE FOR PEOPLE WITH DEVELOPMENTAL  DISABILITIES,  THERE
SHALL  BE  PERFORMED A FAMILY CAREGIVER ASSESSMENT IF A REQUEST FOR SUCH
ASSESSMENT HAS BEEN MADE BY THE CAREGIVER OF SUCH AN INDIVIDUAL.    SUCH
REQUEST  MAY  ALSO BE MADE, WITH THE APPROVAL OF THE CAREGIVER OR PERSON
WITH DEVELOPMENTAL DISABILITIES, BY A PROVIDER  OF  SERVICES  TO  PEOPLE
WITH  DEVELOPMENTAL  DISABILITIES  OR  AN  INDIVIDUAL  FAMILIAR WITH THE
PERSON WITH DEVELOPMENTAL DISABILITIES WHO IS  ALSO  FAMILIAR  WITH  THE
INDIVIDUAL'S LIVING SITUATION.
  (A)  THE  COMMISSIONER OF DEVELOPMENTAL DISABILITIES SHALL PERFORM THE
CAREGIVER ASSESSMENT WITHIN THIRTY DAYS FOLLOWING THE DATE ON WHICH  THE
REQUEST  FOR THE ASSESSMENT WAS RECEIVED BY SUCH COMMISSIONER IN ACCORD-
ANCE WITH PROCEDURES PRESCRIBED BY THE COMMISSIONER.
  (B) THE PERFORMANCE OF SUCH ASSESSMENT SHALL NOT PRECLUDE FURTHER SUCH
ASSESSMENTS WHICH MAY OCCUR AT SUCH INTERVALS AND UNDER SUCH  CONDITIONS
AS PRESCRIBED BY THE COMMISSIONER OF DEVELOPMENTAL DISABILITIES.
  (C)  THE  COMMISSIONER  OF  DEVELOPMENTAL DISABILITIES SHALL PRESCRIBE
THROUGH REGULATIONS A PROCEDURE FOR AUTHORIZING AN ASSESSMENT IF  IT  IS
NOT  POSSIBLE  FOR  A CAREGIVER TO REQUEST AN ASSESSMENT OR TO AUTHORIZE
ANOTHER PARTY TO REQUEST AN ASSESSMENT ON BEHALF OF THE CAREGIVER.
  2. WITH RESPECT TO A PERSON WITH DEVELOPMENTAL DISABILITIES LIVING  AT
HOME  WITH  A FAMILY CAREGIVER, THE OFFICE FOR PEOPLE WITH DEVELOPMENTAL
DISABILITIES SHALL CONDUCT A CAREGIVER ASSESSMENT WHICH SHALL  EVALUATE:
(A)  THE  OVERALL  NATURE  OF  THE INDIVIDUAL'S LIVING SITUATION AND THE
POTENTIAL FOR ABUSE OR INJURY TO THE CAREGIVER OR TO THE INDIVIDUAL WITH
DEVELOPMENTAL DISABILITIES; (B)  THE  AGE  AND  PHYSICAL  AND  EMOTIONAL
HEALTH  AND/OR  ABILITY  OF  THE FAMILY CAREGIVER TO CONTINUE TO PROVIDE
SAFE AND CONSISTENT CARE; (C) THE  HISTORICAL  CONTRIBUTION  THE  FAMILY
CAREGIVER HAS MADE TO CARING FOR THE INDIVIDUAL WITH DEVELOPMENTAL DISA-
BILITIES,  INCLUDING,  BUT NOT LIMITED TO, THE LENGTH OF TIME THE FAMILY
CAREGIVER HAS CARED FOR SUCH INDIVIDUAL; (D) THE ABILITY OF  THE  FAMILY
CAREGIVER  TO  SAFELY MANAGE THE INDIVIDUAL'S NEEDS INCLUDING BEHAVIORAL
NEEDS; (E) THE LIKELIHOOD THE FAMILY CAREGIVER MUST OR WILL ALTER HIS OR
HER LIVING SITUATION SUCH THAT CONTINUED CARE WILL NO LONGER BE  PRACTI-
CAL; (F) THE HEALTH OF THE FAMILY CAREGIVER AND ABILITY TO PERFORM DAILY
LIVING  SKILLS  AND  TO CONTINUE TO PROVIDE CONSISTENT CARE; AND (G) ANY
OTHER FACTORS CRITICAL TO THE CONTINUED SAFETY AND SECURITY OF BOTH  THE
CAREGIVER AND THE INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES.
  3.  A FAMILY CAREGIVER ASSESSMENT SHALL, ACCORDING TO STANDARDS DEVEL-
OPED BY THE COMMISSIONER OF  DEVELOPMENTAL  DISABILITIES,  RESULT  IN  A
DETERMINATION  BY  SUCH  COMMISSIONER  AS TO WHETHER THE INDIVIDUAL WITH
DEVELOPMENTAL DISABILITIES REPRESENTS A CURRENT NEED,  SUBSTANTIAL  NEED
OR EMERGENCY NEED AS DEFINED BY THE COMMISSIONER. THE COMMISSIONER SHALL
PROVIDE AN EXPLANATION OF SUCH DETERMINATION TO THE FAMILY CAREGIVER AND

S. 6767--A                          3

THE  PERSON  WITH  DEVELOPMENTAL  DISABILITIES WITHIN THIRTY DAYS OF THE
COMPLETION OF THE ASSESSMENT ACCORDING TO PROCEDURES PRESCRIBED  BY  THE
COMMISSIONER OF DEVELOPMENTAL DISABILITIES.
  4.  IN  THE EVENT THAT THE FAMILY CAREGIVER ASSESSMENT DETERMINES THAT
THERE IS AN EMERGENCY NEED, THE INDIVIDUAL WITH DEVELOPMENTAL  DISABILI-
TIES  SHALL  BE  ELIGIBLE  FOR  IMMEDIATE  OUT OF HOME PLACEMENT INTO AN
APPROPRIATE RESIDENTIAL SETTING OR, AT THE REQUEST OF THE  FAMILY  CARE-
GIVER, APPROPRIATE AND ADEQUATE IN-HOME SERVICES AND SUPPORTS.
  5.  IF  THE CAREGIVER OR PERSON WITH A DEVELOPMENTAL DISABILITY IS NOT
SATISFIED WITH THE COMMISSIONER'S DECISION PURSUANT TO SUBDIVISION THREE
OF THIS SECTION, SUCH PERSON MAY APPEAL SUCH DECISION WITHIN TEN DAYS TO
THE COMMISSIONER OF DEVELOPMENTAL DISABILITIES, WHO WILL ISSUE  A  FINAL
WRITTEN DECISION WITHIN FOURTEEN DAYS OF THE APPEAL. THE COMMISSIONER AT
HIS  OR HER DISCRETION MAY SEND THE MATTER BACK TO A HEARING OFFICER FOR
FURTHER REVIEW UNDER SUCH TERMS AS SUCH COMMISSIONER SHALL PRESCRIBE.
  DURING THE PERIOD  THAT  AN  OBJECTION  IS  UNDERGOING  ADMINISTRATIVE
REVIEW: (A) A PERSON SHALL PARTICIPATE IN PROGRAMMING MUTUALLY AGREEABLE
TO  THE  OBJECTING PARTY, THE AGENCY, THE PERSON, AND HIS OR HER PARENT,
GUARDIAN, CORRESPONDENT OR ADVOCATE; (B) EVERY EFFORT FEASIBLE SHALL  BE
MADE  TO  MAINTAIN  THE  PERSON  IN AT LEAST HIS OR HER CURRENT LEVEL OF
PROGRAMMING; AND (C) IN ORDER TO PROTECT A PERSON'S  HEALTH,  SAFETY  OR
WELFARE,  OR  THE  HEALTH,  SAFETY OR WELFARE OF OTHERS, NOTHING IN THIS
SECTION SHALL PRECLUDE A CHANGE IN PROGRAMMING FOR, OR THE RELOCATION OR
DISCHARGE OF A PERSON. HOWEVER,  WHILE  AN  OBJECTION  TO  PLACEMENT  OR
DISCHARGE  IS  UNDERGOING ADMINISTRATIVE REVIEW, RELOCATION OR DISCHARGE
SHALL ONLY TAKE PLACE WITH THE COMMISSIONER'S APPROVAL.
  6. THE ABSENCE OF A CAREGIVER ASSESSMENT SHALL NOT PRECLUDE  AN  INDI-
VIDUAL  LIVING  AT HOME FROM RECEIVING AN OUT OF HOME RESIDENTIAL PLACE-
MENT OR ANY OTHER SERVICES.
  7. THE ASSESSMENT PURSUANT TO THIS SECTION AND OTHER MATTERS NECESSARY
TO IMPLEMENT THIS SECTION SHALL BE  DEVELOPED  BY  THE  COMMISSIONER  OF
DEVELOPMENTAL DISABILITIES, IN CONSULTATION WITH THE DEVELOPMENTAL DISA-
BILITIES, ADVISORY COUNCIL ESTABLISHED PURSUANT TO SECTION 13.05 OF THIS
CHAPTER,  AND  SUCH  OTHER  INTERESTED PARTIES AS THE COMMISSIONER DEEMS
APPROPRIATE.
  S 4. This act shall take effect immediately, and any rules  and  regu-
lations  necessary  to  implement  the  provisions  of this act shall be
adopted before and take effect on March 1, 2017.