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 bill of rights for family members and guardians of people 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 bill of rights for qualified family members and guardians of individuals with developmental disabilities who receive services from providers who are certified or approved by the office for people with developmental disabilities (OPWDD).
The bill of rights enumerates several rights of family members and guardians to access information. These rights include: access to a residence's fire safety plan, meal menus, notification of an event that directly impacts the health and safety of an individual, the right to receive information necessary to make informed decisions about the care of an individual, the right to have meaningful participation and input into the plan of care and the right to be advised in writing of any laws, regulations or rules that apply to a family member or guardian's ability to access information or participate in decisions about the individual's life.
The bill also respects that an individual with disabilities may want to limit the involvement of a family member by qualifying, that rights to access to information, coordination of care, etc. will be limited if the individual with disabilities has stated that they do not wish a family member to be involved.
Access to information will also be in compliance with federal and state confidentiality protections to protect the health information of other individuals with developmental disabilities.
A qualified family member includes a parent, spouse, adult sibling, and the adult child of an individual with disabilities.
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 approved by OPWDD. Parents, family members and guardians are frustrated by the lack of family 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 enumerated in this bill will ensure that family members and guardians have access to important information about the care being provided for their developmentally disabled family member.
To be determined.
This act shall take effect immediately.
STATE OF NEW YORK ________________________________________________________________________ 5223--D 2013-2014 Regular Sessions IN SENATE May 14, 2013 ___________Introduced by Sen. CARLUCCI -- read twice and ordered printed, and when printed to be committed to the Committee on Mental Health and Develop- mental Disabilities -- reported favorably from said committee and committed to the Committee on Finance -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said commit- tee -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee -- recommitted to the Committee on Mental Health and Developmental Disabilities in accord- ance with Senate Rule 6, sec. 8 -- reported favorably from said committee and committed to the Committee on Finance -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee -- 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 MOREEXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD10708-22-4 S. 5223--D 2
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: 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-S. 5223--D 3
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- 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 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. (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.