senate Bill S5223D

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

See Assembly Version of this Bill:
A7312D
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

Sponsor Memo

BILL NUMBER:S5223D

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 certified or
approved by the office for people with developmental disabilities

PURPOSE OF BILL:

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

SUMMARY OF SPECIFIC 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
receive services from providers who are certified or approved by the
office for people with developmental disabilities (OPWDD).

The bill of rights enumerates several rights of family members and
guardians to access information. These rights include: access to a
residence's fire safety plan, 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 the right to be
advised in writing of any laws, 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 a family member by qualifying, that rights
to access to information, coordination of care, etc. will be limited
if the individual with 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 the health information of
other individuals with developmental disabilities.

A qualified family member includes a parent, spouse, adult sibling,
and the adult child of an individual with disabilities.

Section 2 is the effective date.

JUSTIFICATION:

Family advocates have expressed growing frustration with the lack of
access to information regarding the care of a loved one residing in
residences certified or approved by OPWDD. Parents, family members and
guardians are frustrated by the lack of family input on placement
decisions, and the lack of notification or access to events and
information regarding the health and safety of their family member.

As New York State moves towards a managed health care system, parents
are concerned about what this will mean for their children with


developmental disabilities. These concerns include whether this
transition will result in reduced communication with, and less
transparency from the managed care entities. Accordingly, 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 "access" to information that is
needed to make informed decisions. 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 developmentally
disabled family member.

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--D

                       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  --  recommitted  to  the
  Committee  on  Mental Health and Developmental Disabilities in accord-
  ance with Senate Rule 6,  sec.  8  --  reported  favorably  from  said
  committee  and  committed  to  the  Committee  on Finance -- committee
  discharged, bill amended, ordered reprinted as amended and recommitted
  to said committee  --  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 certified or approved 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 AND PRIVILEGES.
  (A)  THE  PRINCIPLES IN THE BILL OF RIGHTS AND PRIVILEGES SET FORTH IN
THIS SECTION ARE DECLARED TO BE  THE PUBLIC POLICY OF THE STATE.
  (B) FOR PURPOSES OF THIS SECTION:
  (1) "QUALIFIED PERSONAL REPRESENTATIVE" MEANS A SPOUSE, PARENT,  ADULT
CHILD,  ADULT  SIBLING,  LEGAL GUARDIAN OR PERSONAL REPRESENTATIVE OF AN
INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES  WHO  IS  RECEIVING  SERVICES
FROM A COVERED PROVIDER.
  (2)  "COVERED PROVIDER" MEANS AND INCLUDES ANY ENTITY, PROVIDING RESI-
DENTIAL SERVICES OR NON-RESIDENTIAL  SERVICES OR PROGRAMS TO ONE OR MORE

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10708-22-4

S. 5223--D                          2

PERSONS WITH A DEVELOPMENTAL DISABILITY, THAT IS LICENSED,  OPERATED  OR
CERTIFIED BY THE OFFICE.
  (C) IN ADDITION TO ALL OTHER RIGHTS AND PRIVILEGES UNDER LAW, A QUALI-
FIED  PERSONAL REPRESENTATIVE SHALL HAVE THE FOLLOWING RIGHTS AND PRIVI-
LEGES SET FORTH BELOW (THE "FAMILY BILL OF RIGHTS AND PRIVILEGES")  WITH
RESPECT  TO THEIR INDIVIDUAL FAMILY MEMBERS WITH DEVELOPMENTAL DISABILI-
TIES.
                 "FAMILY BILL OF RIGHTS AND PRIVILEGES"
  A QUALIFIED PERSONAL REPRESENTATIVE SHALL HAVE THE FOLLOWING  GENERAL-
LY-DESCRIBED  RIGHTS  AND  PRIVILEGES  CONCERNING  A  FAMILY MEMBER WITH
DEVELOPMENTAL DISABILITIES RECEIVING SERVICES; TO:
  BE TREATED WITH CONSIDERATION AND RESPECT.
  PARTICIPATE IN AND PROVIDE  MEANINGFUL  INPUT  INTO  THE  DEVELOPMENT,
REVIEW  AND  REVISION OF THE INDIVIDUAL'S CARE PLAN, INCLUDING PLACEMENT
OR TRANSFER WITHIN OR BETWEEN FACILITIES.
  ACCESS INFORMATION  REGARDING  THE  INDIVIDUAL'S  HEALTH  AND  SAFETY,
CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
  BE  NOTIFIED  WITHIN  A  REASONABLE  TIME  OF  ANY EVENT THAT DIRECTLY
IMPACTS THE INDIVIDUAL'S HEALTH AND SAFETY, CONSISTENT WITH FEDERAL  AND
STATE CONFIDENTIALITY PROTECTIONS.
  ACCESS  INFORMATION  NECESSARY FOR A QUALIFIED PERSONAL REPRESENTATIVE
TO MAKE INFORMED DECISIONS, WHEN  APPROPRIATE,  ABOUT  THE  INDIVIDUAL'S
CARE AND CARE COORDINATION.
  FINANCIAL  TRANSPARENCY,  INCLUDING ACCESS TO BUDGETARY INFORMATION OF
THE FACILITY AND INDIVIDUAL EXPENSES, CONSISTENT WITH FEDERAL AND  STATE
CONFIDENTIALITY PROTECTIONS.
  VISIT UNANNOUNCED.
  BE INFORMED OF STAFFING CHANGES.
  ACCESS  A  FACILITY'S  FIRE AND OTHER SAFETY PLANS AND ANY INFORMATION
REGARDING A FACILITY'S PASSAGE OR FAILURE OF ANY SAFETY DRILLS CONDUCTED
BY THE FACILITY AND THE OFFICE.
  ACCESS A FACILITY'S FOOD MENUS.
  CHOOSE A CARE COORDINATOR.
  CONSULT AND BE REPRESENTED BY AN INDEPENDENT ADVOCATE, MENTAL  HYGIENE
LEGAL  SERVICES OR AN ATTORNEY; AND IF SERVICES ARE PROVIDED UNDER MEDI-
CAID MANAGED CARE, TO HAVE A MEDICAID OMBUDSMAN.
  BE INFORMED IN WRITING IN PLAIN LANGUAGE WITH  UP-TO-DATE  INFORMATION
ABOUT:
  (I)  THE  SYSTEM  OF  CARE AND SERVICES FOR PERSONS WITH DEVELOPMENTAL
DISABILITIES, INCLUDING BUT NOT LIMITED TO MANAGED CARE;
  (II) THE LAWS, RULES, AND REGULATIONS  APPLICABLE  TO  THE  RIGHTS  OF
FAMILY  MEMBERS  AND  OTHER  PERSONAL  REPRESENTATIVES TO PARTICIPATE IN
DECISIONS  ABOUT  THE  INDIVIDUAL'S  LIFE  AND  TO  ACCESS  INFORMATION,
RECORDS, REPORTS, CARE PLANS, ETC.; AND
  (III)  THE PROCEDURES TO CHALLENGE ANY DECISION AFFECTING THE INDIVID-
UAL.
  NOTHING IN THIS BILL OF RIGHTS AND PRIVILEGES SHALL  LIMIT  ANY  OTHER
RIGHT  OR  PRIVILEGE UNDER LAW. IF ANY RESIDENTIAL FACILITY OR NON-RESI-
DENTIAL SERVICE PROVIDER FAILS TO AFFORD THESE  RIGHTS  AND  PRIVILEGES,
ASSISTANCE MAY BE SOUGHT FROM THE FACILITY OR PROVIDER, OR THE OFFICE.
  (D)  A  QUALIFIED  PERSONAL REPRESENTATIVE MAY, IN ACCORDANCE WITH LAW
AND APPROPRIATE DUE PROCESS, NOT EXERCISE A RIGHT OR PRIVILEGE DESCRIBED
IN THIS SECTION IF THE SUBJECT INDIVIDUAL  RECEIVING  SERVICES,  WHO  IS
COMPETENT  TO DO SO, SPECIFICALLY AFFIRMS, IN A REASONABLY CONTEMPORANE-
OUS MANNER, THAT SUCH  IDENTIFIED    QUALIFIED  PERSONAL  REPRESENTATIVE
SHALL  NOT  BE  AFFORDED SUCH SPECIFIC RIGHT OR PRIVILEGE. SUCH DETERMI-

S. 5223--D                          3

NATION BY THE SUBJECT INDIVIDUAL SHALL  BE  DESCRIBED  AND  RECORDED  IN
WRITING IN THE CASE FILE BY APPROPRIATE STAFF OF THE FACILITY OR SERVICE
PROVIDER AND A STATEMENT OF REASONS FOR SUCH DENIAL SHALL BE PROVIDED TO
THE QUALIFIED PERSONAL REPRESENTATIVE.
  (E)  THE  STATEMENT OF RIGHTS AND PRIVILEGES SET FORTH IN THIS SECTION
IS INTENDED TO BE A GUIDE TO   THE RIGHTS AND  PRIVILEGES  OF  QUALIFIED
PERSONAL  REPRESENTATIVES OF INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES
RECEIVING RESIDENTIAL AND NON-RESIDENTIAL SERVICES.
  (F) NOTHING IN THIS SECTION SHALL BE READ TO LIMIT ANY OTHER RIGHTS OR
PRIVILEGES THAT QUALIFIED PERSONAL REPRESENTATIVES MAY HAVE OR LIMIT ANY
ACTION OR RELIEF OTHERWISE PERMITTED BY LAW. NOTHING IN THIS    SUBDIVI-
SION  SHALL  ALTER  OR  AFFECT ANY RIGHT OF APPEAL, FORMAL OR OTHERWISE,
SUCH PERSONAL REPRESENTATIVE MAY HAVE  CONCERNING THE DENIAL OF ANY SUCH
RIGHT.
  (G) EACH PROVIDER SHALL CONSPICUOUSLY POST  A  COPY  OF  THE  BILL  OF
RIGHTS  AND  PRIVILEGES  IN  A  PUBLIC  PLACE AT THE LOCATIONS WHERE THE
PROVIDER PROVIDES SERVICES.
  (H) THE COMMISSIONER SHALL:
  (1) POST A COPY OF THE BILL OF RIGHTS AND PRIVILEGES ON  THE  OFFICE'S
WEBSITE;
  (2)  MAKE  COPIES OF THE BILL OF RIGHTS AND PRIVILEGES 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)  AVAILABLE
TO THE PUBLIC AND EVERY PROVIDER;
  (3) ESTABLISH A  PUBLIC  EDUCATION  PROGRAM  DESIGNED  TO  DISSEMINATE
INFORMATION REGARDING  IMPLEMENTATION OF THIS SECTION;
  (4)  INCLUDE SPECIFIC INFORMATION DETAILING THE EFFORTS OF THE COMMIS-
SIONER TO EFFECTUATE THIS SECTION IN THE  STATEWIDE  COMPREHENSIVE  PLAN
REQUIRED PURSUANT TO SECTION 5.07 OF THIS CHAPTER;
  (5)  ADOPT  ALL  RULES  AND  REGULATIONS  NECESSARY TO EFFECTUATE THIS
SECTION.
  S 2. This act shall take effect immediately.

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