A00424 Summary:

BILL NO    A00424A

SAME AS    SAME AS S03634-A

SPONSOR    Abinanti (MS)

COSPNSR    Gunther, Otis, Roberts, Peoples-Stokes, Raia, McDonald, Bichotte,
           Barrett

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.
Go to top

A00424 Actions:

BILL NO    A00424A

01/07/2015 referred to mental health
02/09/2015 reported referred to codes
04/01/2015 amend and recommit to codes
04/01/2015 print number 424a
Go to top

A00424 Votes:

There are no votes for this bill in this legislative session.
Go to top

A00424 Memo:

BILL NUMBER:A424A

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
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 "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
disabilities (OPWDD).

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
confidentiality requirements.

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.

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 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.

LEGISLATIVE HISTORY:

2013-14: A.7312-D passed Assembly; same as S.5223-D referred to mental
health and developmental disabilities

FISCAL IMPLICATIONS:


To be determined.

EFFECTIVE DATE:

This act shall take effect immediately.
Go to top

A00424 Text:

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

                                        424--A

                              2015-2016 Regular Sessions

                                 I N  A S S E M B L Y

                                      (PREFILED)

                                    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.
                                                                  LBD03401-02-5
       A. 424--A                           2

    1  RESPECT TO THEIR INDIVIDUAL FAMILY MEMBERS WITH DEVELOPMENTAL  DISABILI-
    2  TIES.
    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
   33  ABOUT:
   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-
   41  UAL.
   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
   10  RIGHT.
   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
   16  WEBSITE;
   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
   27  SECTION.
   28    S 2. This act shall take effect immediately.
Go to top
Page display time = 0.1271 sec