BILL NO A00424A
SAME AS SAME AS S03634-A
SPONSOR Abinanti (MS)
COSPNSR Gunther, Otis, Roberts, Peoples-Stokes, Raia, McDonald, Bichotte,
MLTSPNSR Arroyo, Clark, Mayer, Schimel, Solages
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 covered provider shall conspicuously post a copy of the bill of
rights and privileges in a public place at each of the covered
provider's facilities. 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, McDONALD, BICHOTTE, BARRETT -- Multi-Sponsored by -- M. of A.
ARROYO, CLARK, MAYER, SCHIMEL, SOLAGES -- read once and referred to
the Committee on Mental Health -- reported and referred to the Commit-
tee on Codes -- 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:
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
EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
[ ] is old law to be omitted.
A. 424--A 2
1 RESPECT TO THEIR INDIVIDUAL FAMILY MEMBERS WITH DEVELOPMENTAL DISABILI-
3 "FAMILY BILL OF RIGHTS AND PRIVILEGES"
4 A QUALIFIED PERSONAL REPRESENTATIVE SHALL HAVE THE FOLLOWING GENERAL-
5 LY-DESCRIBED RIGHTS AND PRIVILEGES CONCERNING A FAMILY MEMBER WITH
6 DEVELOPMENTAL DISABILITIES RECEIVING SERVICES; TO:
7 BE TREATED WITH CONSIDERATION AND RESPECT.
8 PARTICIPATE IN AND PROVIDE MEANINGFUL INPUT INTO THE DEVELOPMENT,
9 REVIEW AND REVISION OF THE INDIVIDUAL'S CARE PLAN, INCLUDING PLACEMENT
10 OR TRANSFER WITHIN OR BETWEEN FACILITIES.
11 ACCESS INFORMATION REGARDING THE INDIVIDUAL'S HEALTH AND SAFETY,
12 CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
13 BE NOTIFIED WITHIN A REASONABLE TIME OF ANY EVENT THAT DIRECTLY
14 IMPACTS THE INDIVIDUAL'S HEALTH AND SAFETY, CONSISTENT WITH FEDERAL AND
15 STATE CONFIDENTIALITY PROTECTIONS.
16 ACCESS INFORMATION NECESSARY FOR A QUALIFIED PERSONAL REPRESENTATIVE
17 TO MAKE INFORMED DECISIONS, WHEN APPROPRIATE, ABOUT THE INDIVIDUAL'S
18 CARE AND CARE COORDINATION.
19 FINANCIAL TRANSPARENCY, INCLUDING ACCESS TO BUDGETARY INFORMATION OF
20 THE FACILITY AND INDIVIDUAL EXPENSES, CONSISTENT WITH FEDERAL AND STATE
21 CONFIDENTIALITY PROTECTIONS.
22 VISIT UNANNOUNCED.
23 BE INFORMED OF STAFFING CHANGES.
24 ACCESS A FACILITY'S FIRE AND OTHER SAFETY PLANS AND ANY INFORMATION
25 REGARDING A FACILITY'S PASSAGE OR FAILURE OF ANY SAFETY DRILLS CONDUCTED
26 BY THE FACILITY AND THE OFFICE.
27 ACCESS A FACILITY'S FOOD MENUS.
28 CHOOSE A CARE COORDINATOR.
29 CONSULT AND BE REPRESENTED BY AN INDEPENDENT ADVOCATE, MENTAL HYGIENE
30 LEGAL SERVICES OR AN ATTORNEY; AND IF SERVICES ARE PROVIDED UNDER MEDI-
31 CAID MANAGED CARE, TO HAVE A MEDICAID OMBUDSMAN.
32 BE INFORMED IN WRITING IN PLAIN LANGUAGE WITH UP-TO-DATE INFORMATION
34 (I) THE SYSTEM OF CARE AND SERVICES FOR PERSONS WITH DEVELOPMENTAL
35 DISABILITIES, INCLUDING BUT NOT LIMITED TO MANAGED CARE;
36 (II) THE LAWS, RULES, AND REGULATIONS APPLICABLE TO THE RIGHTS OF
37 FAMILY MEMBERS AND OTHER PERSONAL REPRESENTATIVES TO PARTICIPATE IN
38 DECISIONS ABOUT THE INDIVIDUAL'S LIFE AND TO ACCESS INFORMATION,
39 RECORDS, REPORTS, CARE PLANS, ETC.; AND
40 (III) THE PROCEDURES TO CHALLENGE ANY DECISION AFFECTING THE INDIVID-
42 NOTHING IN THIS BILL OF RIGHTS AND PRIVILEGES SHALL LIMIT ANY OTHER
43 RIGHT OR PRIVILEGE UNDER LAW. IF ANY RESIDENTIAL FACILITY OR NON-RESI-
44 DENTIAL SERVICE PROVIDER FAILS TO AFFORD THESE RIGHTS AND PRIVILEGES,
45 ASSISTANCE MAY BE SOUGHT FROM THE FACILITY OR PROVIDER, OR THE OFFICE.
46 (D) A QUALIFIED PERSONAL REPRESENTATIVE MAY, IN ACCORDANCE WITH LAW
47 AND APPROPRIATE DUE PROCESS, NOT EXERCISE A RIGHT OR PRIVILEGE DESCRIBED
48 IN THIS SECTION IF THE SUBJECT INDIVIDUAL RECEIVING SERVICES, WHO IS
49 COMPETENT TO DO SO, SPECIFICALLY AFFIRMS, IN A REASONABLY CONTEMPORANE-
50 OUS MANNER, THAT SUCH IDENTIFIED QUALIFIED PERSONAL REPRESENTATIVE
51 SHALL NOT BE AFFORDED SUCH SPECIFIC RIGHT OR PRIVILEGE. SUCH DETERMI-
52 NATION BY THE SUBJECT INDIVIDUAL SHALL BE DESCRIBED AND RECORDED IN
53 WRITING IN THE CASE FILE BY APPROPRIATE STAFF OF THE FACILITY OR SERVICE
54 PROVIDER AND A STATEMENT OF REASONS FOR SUCH DENIAL SHALL BE PROVIDED TO
55 THE QUALIFIED PERSONAL REPRESENTATIVE.
A. 424--A 3
1 (E) THE STATEMENT OF RIGHTS AND PRIVILEGES SET FORTH IN THIS SECTION
2 IS INTENDED TO BE A GUIDE TO THE RIGHTS AND PRIVILEGES OF QUALIFIED
3 PERSONAL REPRESENTATIVES OF INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES
4 RECEIVING RESIDENTIAL AND NON-RESIDENTIAL SERVICES.
5 (F) NOTHING IN THIS SECTION SHALL BE READ TO LIMIT ANY OTHER RIGHTS OR
6 PRIVILEGES THAT QUALIFIED PERSONAL REPRESENTATIVES MAY HAVE OR LIMIT ANY
7 ACTION OR RELIEF OTHERWISE PERMITTED BY LAW. NOTHING IN THIS SUBDIVI-
8 SION SHALL ALTER OR AFFECT ANY RIGHT OF APPEAL, FORMAL OR OTHERWISE,
9 SUCH PERSONAL REPRESENTATIVE MAY HAVE CONCERNING THE DENIAL OF ANY SUCH
11 (G) EACH COVERED PROVIDER SHALL CONSPICUOUSLY POST A COPY OF THE BILL
12 OF RIGHTS AND PRIVILEGES IN A PUBLIC PLACE AT EACH OF THE COVERED
13 PROVIDER'S FACILITIES.
14 (H) THE COMMISSIONER SHALL:
15 (1) POST A COPY OF THE BILL OF RIGHTS AND PRIVILEGES ON THE OFFICE'S
17 (2) MAKE COPIES OF THE BILL OF RIGHTS AND PRIVILEGES IN ENGLISH, AND
18 THE TOP SIX LANGUAGES OTHER THAN ENGLISH SPOKEN IN THE STATE (ACCORDING
19 TO THE LATEST AVAILABLE DATA FROM THE U.S. BUREAU OF CENSUS) AVAILABLE
20 TO THE PUBLIC AND EVERY PROVIDER;
21 (3) ESTABLISH A PUBLIC EDUCATION PROGRAM DESIGNED TO DISSEMINATE
22 INFORMATION REGARDING IMPLEMENTATION OF THIS SECTION;
23 (4) INCLUDE SPECIFIC INFORMATION DETAILING THE EFFORTS OF THE COMMIS-
24 SIONER TO EFFECTUATE THIS SECTION IN THE STATEWIDE COMPREHENSIVE PLAN
25 REQUIRED PURSUANT TO SECTION 5.07 OF THIS CHAPTER;
26 (5) ADOPT ALL RULES AND REGULATIONS NECESSARY TO EFFECTUATE THIS
28 S 2. This act shall take effect immediately.