BILL NO A00424
SAME AS SAME AS S03634
SPONSOR Abinanti (MS)
COSPNSR Gunther, Otis, Roberts, Peoples-Stokes, Raia, McDonald, Bichotte,
MLTSPNSR Arroyo, Clark, Mayer, Schimel
Add S13.04, Ment Hyg L
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.
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 "Family Bill of Rights and Privileges" for
qualified personal representatives of an individual with developmental
SUMMARY OF SPECIFIC PROVISIONS:
Section 1 of the bill amends the mental hygiene law by adding a new
section 13.04 to create a "Family Bill of Rights and Privileges" for
qualified personal representatives of individuals with developmental
disabilities who receive services from a covered provider.
A "qualified personal representative" means a spouse, parent, adult
child, adult sibling, legal guardian or personal representative of an
individual with disabilities who is receiving services from a covered
provider. A covered provider means and includes any entity, providing
residential services or non-residential services or programs to one or
more persons with a developmental disability that is licensed,
operated or certified by the office for people with developmental
Section 1 provides that in addition to all other rights and privileges
under law, a qualified personal representative shall have the
generally-described rights and privileges set forth, including to:
1. Participate in and provide meaningful input into the development,
review and revision of the individual's care plan.
2. Access information regarding the individual's health and safety,
consistent with federal and state confidentiality protections.
3. 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.
4. Access information necessary to make informed decisions, when
appropriate, about the individual's care and care coordination.
5. Visit unannounced.
6. Choose a care coordinator.
7. Financial transparency, consistent with federal and state
8. Be informed of staffing changes.
9. Be informed in writing in plain language with up-to-date
information about the system of care and services for persons with
developmental disabilities; the laws rules and regulations applicable
to the rights of family members and personal representatives to
participate in decisions and access information, records, etc.; and
the procedures to challenge any decision affecting the individual.
An individual receiving services, who is competent to do so, may limit
the rights and privileges afforded a qualified personal representative
as provided in this section.
Nothing in this section shall be read to limit any other rights or
privileges that a qualified representative may have or limit any
action or relief otherwise permitted by law.
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. The commissioner shall post a copy on the office's
website; make copies of the bill in English, and the top six languages
other than English spoken in the state; establish a public education
program to disseminate information regarding implementation of this
section; include information detailing the efforts to effectuate this
section in the statewide comprehensive plan required pursuant to
section 5.07 of this chapter; and adopt all rules and regulations
necessary to effectuate this section.
Section 2 is the effective date.
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 licensed by OPWDD. Parents, family members and
guardians are frustrated by the lack of 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 and privileges enumerated in this bill will ensure that
family members and legal representatives have access to important
information about the care being provided for their developmentally
disabled family member.
2013-14: A.7312-D passed Assembly; same as S.5223-D referred to mental
health and developmental disabilities
To be determined.
This act shall take effect immediately.
S T A T E O F N E W Y O R K
2015-2016 Regular Sessions
I N A S S E M B L Y
January 7, 2015
Introduced by M. of A. ABINANTI, GUNTHER, OTIS, ROBERTS, PEOPLES-STOKES,
RAIA -- Multi-Sponsored by -- M. of A. ARROYO, CLARK, MAYER, SCHIMEL
-- read once and referred to the Committee on Mental Health
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:
1 Section 1. The mental hygiene law is amended by adding a new section
2 13.04 to read as follows:
3 S 13.04 FAMILY BILL OF RIGHTS AND PRIVILEGES.
4 (A) THE PRINCIPLES IN THE BILL OF RIGHTS AND PRIVILEGES SET FORTH IN
5 THIS SECTION ARE DECLARED TO BE THE PUBLIC POLICY OF THE STATE.
6 (B) FOR PURPOSES OF THIS SECTION:
7 (1) "QUALIFIED PERSONAL REPRESENTATIVE" MEANS A SPOUSE, PARENT, ADULT
8 CHILD, ADULT SIBLING, LEGAL GUARDIAN OR PERSONAL REPRESENTATIVE OF AN
9 INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES WHO IS RECEIVING SERVICES
10 FROM A COVERED PROVIDER.
11 (2) "COVERED PROVIDER" MEANS AND INCLUDES ANY ENTITY, PROVIDING RESI-
12 DENTIAL SERVICES OR NON-RESIDENTIAL SERVICES OR PROGRAMS TO ONE OR MORE
13 PERSONS WITH A DEVELOPMENTAL DISABILITY, THAT IS LICENSED, OPERATED OR
14 CERTIFIED BY THE OFFICE.
15 (C) IN ADDITION TO ALL OTHER RIGHTS AND PRIVILEGES UNDER LAW, A QUALI-
16 FIED PERSONAL REPRESENTATIVE SHALL HAVE THE FOLLOWING RIGHTS AND PRIVI-
17 LEGES SET FORTH BELOW (THE "FAMILY BILL OF RIGHTS AND PRIVILEGES") WITH
18 RESPECT TO THEIR INDIVIDUAL FAMILY MEMBERS WITH DEVELOPMENTAL DISABILI-
20 "FAMILY BILL OF RIGHTS AND PRIVILEGES"
EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
[ ] is old law to be omitted.
A. 424 2
1 A QUALIFIED PERSONAL REPRESENTATIVE SHALL HAVE THE FOLLOWING GENERAL-
2 LY-DESCRIBED RIGHTS AND PRIVILEGES CONCERNING A FAMILY MEMBER WITH
3 DEVELOPMENTAL DISABILITIES RECEIVING SERVICES; TO:
4 BE TREATED WITH CONSIDERATION AND RESPECT.
5 PARTICIPATE IN AND PROVIDE MEANINGFUL INPUT INTO THE DEVELOPMENT,
6 REVIEW AND REVISION OF THE INDIVIDUAL'S CARE PLAN, INCLUDING PLACEMENT
7 OR TRANSFER WITHIN OR BETWEEN FACILITIES.
8 ACCESS INFORMATION REGARDING THE INDIVIDUAL'S HEALTH AND SAFETY,
9 CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
10 BE NOTIFIED WITHIN A REASONABLE TIME OF ANY EVENT THAT DIRECTLY
11 IMPACTS THE INDIVIDUAL'S HEALTH AND SAFETY, CONSISTENT WITH FEDERAL AND
12 STATE CONFIDENTIALITY PROTECTIONS.
13 ACCESS INFORMATION NECESSARY FOR A QUALIFIED PERSONAL REPRESENTATIVE
14 TO MAKE INFORMED DECISIONS, WHEN APPROPRIATE, ABOUT THE INDIVIDUAL'S
15 CARE AND CARE COORDINATION.
16 FINANCIAL TRANSPARENCY, INCLUDING ACCESS TO BUDGETARY INFORMATION OF
17 THE FACILITY AND INDIVIDUAL EXPENSES, CONSISTENT WITH FEDERAL AND STATE
18 CONFIDENTIALITY PROTECTIONS.
19 VISIT UNANNOUNCED.
20 BE INFORMED OF STAFFING CHANGES.
21 ACCESS A FACILITY'S FIRE AND OTHER SAFETY PLANS AND ANY INFORMATION
22 REGARDING A FACILITY'S PASSAGE OR FAILURE OF ANY SAFETY DRILLS CONDUCTED
23 BY THE FACILITY AND THE OFFICE.
24 ACCESS A FACILITY'S FOOD MENUS.
25 CHOOSE A CARE COORDINATOR.
26 CONSULT AND BE REPRESENTED BY AN INDEPENDENT ADVOCATE, MENTAL HYGIENE
27 LEGAL SERVICES OR AN ATTORNEY; AND IF SERVICES ARE PROVIDED UNDER MEDI-
28 CAID MANAGED CARE, TO HAVE A MEDICAID OMBUDSMAN.
29 BE INFORMED IN WRITING IN PLAIN LANGUAGE WITH UP-TO-DATE INFORMATION
31 (I) THE SYSTEM OF CARE AND SERVICES FOR PERSONS WITH DEVELOPMENTAL
32 DISABILITIES, INCLUDING BUT NOT LIMITED TO MANAGED CARE;
33 (II) THE LAWS, RULES, AND REGULATIONS APPLICABLE TO THE RIGHTS OF
34 FAMILY MEMBERS AND OTHER PERSONAL REPRESENTATIVES TO PARTICIPATE IN
35 DECISIONS ABOUT THE INDIVIDUAL'S LIFE AND TO ACCESS INFORMATION,
36 RECORDS, REPORTS, CARE PLANS, ETC.; AND
37 (III) THE PROCEDURES TO CHALLENGE ANY DECISION AFFECTING THE INDIVID-
39 NOTHING IN THIS BILL OF RIGHTS AND PRIVILEGES SHALL LIMIT ANY OTHER
40 RIGHT OR PRIVILEGE UNDER LAW. IF ANY RESIDENTIAL FACILITY OR NON-RESI-
41 DENTIAL SERVICE PROVIDER FAILS TO AFFORD THESE RIGHTS AND PRIVILEGES,
42 ASSISTANCE MAY BE SOUGHT FROM THE FACILITY OR PROVIDER, OR THE OFFICE.
43 (D) A QUALIFIED PERSONAL REPRESENTATIVE MAY, IN ACCORDANCE WITH LAW
44 AND APPROPRIATE DUE PROCESS, NOT EXERCISE A RIGHT OR PRIVILEGE DESCRIBED
45 IN THIS SECTION IF THE SUBJECT INDIVIDUAL RECEIVING SERVICES, WHO IS
46 COMPETENT TO DO SO, SPECIFICALLY AFFIRMS, IN A REASONABLY CONTEMPORANE-
47 OUS MANNER, THAT SUCH IDENTIFIED QUALIFIED PERSONAL REPRESENTATIVE
48 SHALL NOT BE AFFORDED SUCH SPECIFIC RIGHT OR PRIVILEGE. SUCH DETERMI-
49 NATION BY THE SUBJECT INDIVIDUAL SHALL BE DESCRIBED AND RECORDED IN
50 WRITING IN THE CASE FILE BY APPROPRIATE STAFF OF THE FACILITY OR SERVICE
51 PROVIDER AND A STATEMENT OF REASONS FOR SUCH DENIAL SHALL BE PROVIDED TO
52 THE QUALIFIED PERSONAL REPRESENTATIVE.
53 (E) THE STATEMENT OF RIGHTS AND PRIVILEGES SET FORTH IN THIS SECTION
54 IS INTENDED TO BE A GUIDE TO THE RIGHTS AND PRIVILEGES OF QUALIFIED
55 PERSONAL REPRESENTATIVES OF INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES
56 RECEIVING RESIDENTIAL AND NON-RESIDENTIAL SERVICES.
A. 424 3
1 (F) NOTHING IN THIS SECTION SHALL BE READ TO LIMIT ANY OTHER RIGHTS OR
2 PRIVILEGES THAT QUALIFIED PERSONAL REPRESENTATIVES MAY HAVE OR LIMIT ANY
3 ACTION OR RELIEF OTHERWISE PERMITTED BY LAW. NOTHING IN THIS SUBDIVI-
4 SION SHALL ALTER OR AFFECT ANY RIGHT OF APPEAL, FORMAL OR OTHERWISE,
5 SUCH PERSONAL REPRESENTATIVE MAY HAVE CONCERNING THE DENIAL OF ANY SUCH
7 (G) EACH PROVIDER SHALL CONSPICUOUSLY POST A COPY OF THE BILL OF
8 RIGHTS AND PRIVILEGES IN A PUBLIC PLACE AT THE LOCATIONS WHERE THE
9 PROVIDER PROVIDES SERVICES.
10 (H) THE COMMISSIONER SHALL:
11 (1) POST A COPY OF THE BILL OF RIGHTS AND PRIVILEGES ON THE OFFICE'S
13 (2) MAKE COPIES OF THE BILL OF RIGHTS AND PRIVILEGES IN ENGLISH, AND
14 THE TOP SIX LANGUAGES OTHER THAN ENGLISH SPOKEN IN THE STATE (ACCORDING
15 TO THE LATEST AVAILABLE DATA FROM THE U.S. BUREAU OF CENSUS) AVAILABLE
16 TO THE PUBLIC AND EVERY PROVIDER;
17 (3) ESTABLISH A PUBLIC EDUCATION PROGRAM DESIGNED TO DISSEMINATE
18 INFORMATION REGARDING IMPLEMENTATION OF THIS SECTION;
19 (4) INCLUDE SPECIFIC INFORMATION DETAILING THE EFFORTS OF THE COMMIS-
20 SIONER TO EFFECTUATE THIS SECTION IN THE STATEWIDE COMPREHENSIVE PLAN
21 REQUIRED PURSUANT TO SECTION 5.07 OF THIS CHAPTER;
22 (5) ADOPT ALL RULES AND REGULATIONS NECESSARY TO EFFECTUATE THIS
24 S 2. This act shall take effect immediately.