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:

  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
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

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD03401-02-5
              

A. 424--A                           2

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-
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.

A. 424--A                           3

  (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 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.
  (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.