S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   3150
 
                        2019-2020 Regular Sessions
 
                           I N  A S S E M B L Y
 
                             January 28, 2019
                                ___________
 
 Introduced by M. of A. ABINANTI -- read once and referred to the Commit-
   tee 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:
 
   Section 1. The mental hygiene law is amended by adding a  new  section
 13.04 to read as follows:
 § 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
 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:
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

                                                            LBD02442-01-9

 A. 3150                             2
 
   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.
   (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-

 A. 3150                             3
 
 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.
   § 2. This act shall take effect immediately.