senate Bill S5223B

Amended

Relates to the creation of a bill of rights for family and guardians of people with developmental disabilities that reside in residences certified or approved by the OPWDD

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Bill Status


  • Introduced
  • In Committee
  • On Floor Calendar
    • Passed Senate
    • Passed Assembly
  • Delivered to Governor
  • Signed/Vetoed by Governor
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actions

  • 14 / May / 2013
    • REFERRED TO MENTAL HEALTH AND DEVELOPMENTAL DISABILITIES
  • 22 / May / 2013
    • REPORTED AND COMMITTED TO FINANCE
  • 13 / Jun / 2013
    • AMEND AND RECOMMIT TO FINANCE
  • 13 / Jun / 2013
    • PRINT NUMBER 5223A
  • 18 / Dec / 2013
    • AMEND AND RECOMMIT TO FINANCE
  • 18 / Dec / 2013
    • PRINT NUMBER 5223B
  • 08 / Jan / 2014
    • REFERRED TO MENTAL HEALTH AND DEVELOPMENTAL DISABILITIES
  • 29 / Apr / 2014
    • REPORTED AND COMMITTED TO FINANCE
  • 12 / May / 2014
    • AMEND (T) AND RECOMMIT TO FINANCE
  • 12 / May / 2014
    • PRINT NUMBER 5223C
  • 19 / Jun / 2014
    • AMEND AND RECOMMIT TO FINANCE
  • 19 / Jun / 2014
    • PRINT NUMBER 5223D

Summary

Relates to the creation of a bill of rights for family and guardians of people with developmental disabilities that reside in residences certified or approved by the office for people with developmental disabilities.

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Bill Details

Versions:
S5223
S5223A
S5223B
S5223C
S5223D
Legislative Cycle:
2013-2014
Current Committee:
Senate Finance
Law Section:
Mental Hygiene Law
Laws Affected:
Add ยง13.04, Ment Hyg L

Votes

10
0
10
Aye
0
Nay
1
aye with reservations
0
absent
0
excused
0
abstained
show Mental Health and Developmental Disabilities committee vote details

Sponsor Memo

BILL NUMBER:S5223B

TITLE OF BILL: An act to amend the mental hygiene law, in relation to
creating a bill of rights for family and guardians of people with
developmental disabilities that reside in residences funded, licensed
and operated by the office for people with developmental disabilities

PURPOSE:

The bill creates a bill of rights for family members and guardians of
people with developmental disabilities.

SUMMARY OF PROVISIONS:

Section 1 of the bill amends the mental hygiene law by adding a new
section 13.04 to create a bill of rights for qualified family members
and guardians of individuals with developmental disabilities who
receives services from providers who are operated, licensed or funded
by the office.

The bill of rights enumerates several rights that family members and
guardians should have in regards to access information. These rights
include: access to fire safety plans, meal menus, notification of an
event that directly impacts the health and safety of an individual,
the right to receive information necessary to make informed decisions
about the care of an individual, the right to have meaningful
participation and input into the plan of care and to be advised in
writing of any law, regulations or rules that apply to a family member
or guardian's ability to access information or participate in
decisions about the individual's life.

The bill also respects that an individual with disabilities may want
to limit the involvement of certain family members by qualifying that
rights to access to information, coordination of care etc, will be
limited if the individual with developmental disabilities has stated
that they do not wish a family member to be involved.

Access to information will also be in compliance with federal and
state confidentiality protections to protect other individuals with
developmental disabilities health information. A qualified family
member includes parents, adult siblings, spouse, and the adult child
of an individual with developmental disabilities.

Section 2 is the effective date.

JUSTIFICATION:

Family advocates have expressed their growing frustrations with the
lack of access to information regarding the care of a loved one
residing in an residence operated by OPWDD. Parents, family members
and guardians are frustrated by the lack of family input on placement
decisions and by the lack of notification of or access to, events and
information regarding the health and safety of their family member.
As the New York State moves towards a managed care system, parents are
very concerned about what this will mean for their children with
developmental disabilities They are concerned that this transition
will result in a lack of communication with, and transparency from,


the managed care entities. This is why parent advocates have expressed
the need for input in choosing a care coordinator, making sure there
is a program to advocate on behalf of their family member's needs, and
to have access to any information that is needed to make an informed
decision. The rights enumerated in this bill will ensure that family
members and guardians have access to important information about the
care being provided for their family member with a developmental
disability.

LEGISLATIVE HISTORY:

New bill.

FISCAL IMPLICATIONS:

To be determined.

EFFECTIVE DATE:

This act shall take effect immediately.

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

                                 5223--B

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                              May 14, 2013
                               ___________

Introduced  by Sen. CARLUCCI -- read twice and ordered printed, and when
  printed to be committed to the Committee on Mental Health and Develop-
  mental Disabilities -- reported  favorably  from  said  committee  and
  committed  to  the  Committee on Finance -- committee discharged, bill
  amended, ordered reprinted as amended and recommitted to said  commit-
  tee  --  committee  discharged,  bill  amended,  ordered  reprinted as
  amended and recommitted to said committee

AN ACT to amend the mental hygiene law, in relation to creating  a  bill
  of  rights for family and guardians of people with developmental disa-
  bilities that reside in residences funded, licensed  and  operated  by
  the office for people with developmental disabilities

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

  Section 1. The mental hygiene law is amended by adding a  new  section
13.04 to read as follows:
S 13.04 FAMILY BILL OF RIGHTS.
  (A)  THE  PRINCIPLES ENUNCIATED IN SUBDIVISION (D) OF THIS SECTION ARE
DECLARED TO BE THE PUBLIC POLICY OF THE STATE AND A COPY OF SUCH  STATE-
MENT  OF  RIGHTS SHALL BE POSTED CONSPICUOUSLY IN A PUBLIC PLACE IN EACH
PROVIDER OF SERVICES AND  RESIDENTIAL  FACILITY  OPERATED,  LICENSED  OR
FUNDED  BY  THE  OFFICE. FOR PURPOSES OF THIS SECTION, "QUALIFIED FAMILY
MEMBER" MEANS A PARENT, SPOUSE, ADULT SIBLING OR AN ADULT CHILD  OF  THE
RESIDENT.
  (B)  THE  COMMISSIONER  SHALL  MAKE  AVAILABLE  TO  EVERY  PROVIDER OF
SERVICES AND RESIDENCE OPERATED, LICENSED OR FUNDED BY  THE  OFFICE,  ON
THE  OFFICE'S  WEBSITE  A  COPY  OF  THE STATEMENT OF RIGHTS PROVIDED IN
SUBDIVISION (D) OF THIS SECTION IN ENGLISH AND  THE  TOP  SIX  LANGUAGES
OTHER THAN ENGLISH SPOKEN IN THE STATE ACCORDING TO THE LATEST AVAILABLE
DATA FROM THE U.S. BUREAU OF CENSUS, AND SHALL ADOPT ANY RULES AND REGU-
LATIONS NECESSARY TO ENSURE THAT SUCH QUALIFIED FAMILY MEMBERS AND GUAR-
DIANS ARE TREATED IN ACCORDANCE WITH THE PROVISIONS OF SUCH STATEMENT.

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10708-15-3

S. 5223--B                          2

  (C)  SUCH  RIGHTS SHALL APPLY TO FAMILY MEMBERS DEFINED IN SUBDIVISION
(A) OF THIS SECTION PROVIDED HOWEVER, SUCH RIGHTS SHALL NOT APPLY IF  AN
INDIVIDUAL  WITH DEVELOPMENTAL DISABILITIES HAS SPECIFICALLY STATED THAT
SUCH FAMILY MEMBERS SHALL NOT HAVE ACCESS TO ANY  PERSONAL  INFORMATION,
BE  INVOLVED IN ANY CARE PLANNING OR COORDINATION, OR BE INVOLVED IN ANY
HEALTH CARE DECISIONS.
  (D) THE STATEMENT OF RIGHTS SHALL CONSIST OF THE FOLLOWING:
  "FAMILY BILL OF RIGHTS"
  QUALIFIED FAMILY MEMBERS AND GUARDIANS SHALL HAVE THE FOLLOWING RIGHTS
IN REGARDS TO AN INDIVIDUAL RECEIVING SERVICES THROUGH PROGRAMS, INCLUD-
ING, BUT NOT  LIMITED  TO,  RESIDENTIAL  SERVICES,  THAT  ARE  OPERATED,
LICENSED OR FUNDED BY THE OFFICE.  THESE RIGHTS SHALL INCLUDE:
  YOU HAVE THE RIGHT TO BE TREATED WITH CONSIDERATION AND RESPECT.
  YOU  HAVE  THE  RIGHT TO HAVE ACCESS TO A RESIDENCE'S FIRE SAFETY PLAN
AND ANY INFORMATION REGARDING A RESIDENCE'S PASSAGE OR  FAILURE  OF  ANY
FIRE SAFETY DRILLS CONDUCTED BY THE RESIDENCE AND THE OFFICE.
  YOU  HAVE  THE RIGHT TO NOTIFICATION WITHIN A REASONABLE TIME FRAME OF
ANY EVENT THAT DIRECTLY IMPACTS THE HEALTH AND SAFETY OF THE INDIVIDUAL,
CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO HAVE ACCESS TO INFORMATION REGARDING THE  HEALTH
AND  SAFETY  OF THE INDIVIDUAL, CONSISTENT WITH FEDERAL AND STATE CONFI-
DENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO HAVE ACCESS TO A RESIDENCE'S FOOD MENUS.
  YOU HAVE THE RIGHT FOR A QUALIFIED FAMILY MEMBER  OR  GUARDIAN  TO  BE
ABLE TO HAVE UNANNOUNCED VISITS.
  YOU  HAVE  THE RIGHT TO RECEIVE INFORMATION NECESSARY TO MAKE INFORMED
DECISIONS, WHEN APPROPRIATE, ABOUT THE CARE OF THE INDIVIDUAL.
  YOU HAVE THE RIGHT TO HAVE MEANINGFUL PARTICIPATION  AND  INPUT  INTO,
AND  ONGOING REVIEW AND INVOLVEMENT WITH, THE INDIVIDUAL'S PLAN OF CARE,
INCLUDING BUT NOT LIMITED TO ANY DECISION REGARDING  APPROPRIATE  PLACE-
MENT OR TRANSFER OF AN INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES WITHIN
A RESIDENCE OPERATED, LICENSED OR FUNDED BY THE OFFICE.
  YOU HAVE THE RIGHT TO FINANCIAL TRANSPARENCY INCLUDING ACCESS TO BUDG-
ETARY  INFORMATION  OF  THE  RESIDENCE  INCLUDING  INDIVIDUAL  EXPENSES,
CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO BE INFORMED REGARDING ANY STAFFING CHANGES.
  YOU HAVE THE RIGHT TO BE GIVEN CLEAR, UP TO DATE, UNDERSTANDABLE,  AND
HONEST  INFORMATION  ABOUT  THE  SYSTEM OF CARE AND SERVICES FOR PERSONS
WITH DEVELOPMENTAL DISABILITIES, INCLUDING BUT NOT  LIMITED  TO  MANAGED
CARE.
  YOU  HAVE  THE  RIGHT  TO BE ADVISED IN WRITING OF ANY LAWS, RULES, OR
REGULATIONS THAT APPLY TO A QUALIFIED  FAMILY  MEMBER'S  AND  GUARDIAN'S
ABILITY  TO  ACCESS  INFORMATION  OR  PARTICIPATE IN DECISIONS ABOUT THE
INDIVIDUAL'S LIFE, INCLUDING BUT NOT LIMITED  TO,  GUARDIANSHIP  ISSUES,
AND  ACCESS  TO  RECORDS,  REPORTS,  PLANS  OF CARE, AND OTHER PERTINENT
INFORMATION.
  FOR PURPOSES OF MEDICAID WAIVERS OBTAINED BY THE STATE:
  YOU HAVE THE RIGHT TO CHOOSE A CARE COORDINATOR.
  YOU HAVE THE RIGHT TO RECEIVE INFORMATION NECESSARY TO  MAKE  INFORMED
DECISIONS, WHEN APPROPRIATE, ABOUT THE CARE COORDINATION OF THE INDIVID-
UAL.
  YOU HAVE THE RIGHT TO INDEPENDENT ADVOCATES.
  YOU HAVE THE RIGHT TO BE NOTIFIED IN WRITING ABOUT ALL MANDATED PROCE-
DURES IF QUALIFIED FAMILY MEMBERS OR GUARDIANS NEED TO CHALLENGE A DECI-
SION.

S. 5223--B                          3

  ALL  THE  ABOVE  ARE YOUR RIGHTS. NOTHING IN THIS BILL OF RIGHTS SHALL
LIMIT ANY OTHER ACTION OR RELIEF PERMITTED BY LAW.  IF THE  PROVIDER  OR
RESIDENTIAL  FACILITY DOES NOT HONOR THESE RIGHTS YOU MAY PURSUE HELP BY
CONTACTING THE NEW YORK STATE  DEPARTMENT  OF  HEALTH,  THE  OFFICE  FOR
PEOPLE  WITH DEVELOPMENTAL DISABILITIES OR BY CONTACTING THE RESIDENTIAL
FACILITY OR THE PROVIDER OF SERVICES.
  (E) THE COMMISSIONER SHALL ESTABLISH A  PUBLIC  EDUCATION  PROGRAM  TO
DISSEMINATE  INFORMATION  REGARDING IMPLEMENTATION OF THIS SECTION. SUCH
INFORMATION SHALL INCLUDE, BUT NOT BE LIMITED  TO,  PUBLICATION  OF  THE
FAMILY  BILL  OF RIGHTS AS SPECIFIED IN SUBDIVISION (D) OF THIS SECTION;
PUBLICATION OF THE RIGHTS OF QUALIFIED FAMILY MEMBERS AND GUARDIANS OF A
PERSON RECEIVING SERVICES FROM A PROVIDER OR IN A  RESIDENTIAL  FACILITY
OPERATED,  LICENSED, OR FUNDED BY THE OFFICE; AND PUBLICATION OF CERTAIN
PROVISIONS RELATING TO MEDICAID WAIVERS OBTAINED BY THE STATE.
  S 2. This act shall take effect immediately.

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