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 funded, licensed and operated by the office for people with developmental disabilities
The bill creates a bill of rights for family members and guardians of people with developmental disabilities.
SUMMARY OF 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 receives services from providers who are operated, licensed or funded by the office.
The bill of rights enumerates several rights that family members and guardians should have in regards to access information. These rights include: access to fire safety plans, 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 to be advised in writing of any law, 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 certain family members by qualifying that rights to access to information, coordination of care etc, will be limited if the individual with developmental 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 other individuals with developmental disabilities health information. A qualified family member includes parents, adult siblings, spouse, and the adult child of an individual with developmental disabilities.
Section 2 is the effective date.
Family advocates have expressed their growing frustrations with the lack of access to information regarding the care of a loved one residing in an residence operated by OPWDD. Parents, family members and guardians are frustrated by the lack of family input on placement decisions and by the lack of notification of or access to, events and information regarding the health and safety of their family member. As the New York State moves towards a managed care system, parents are very concerned about what this will mean for their children with developmental disabilities They are concerned that this transition will result in a lack of communication with, and transparency from,
the managed care entities. This is why 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 to have access to any information that is needed to make an informed decision. 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 family member with a developmental disability.
To be determined.
This act shall take effect immediately.
STATE OF NEW YORK ________________________________________________________________________ 5223--B 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 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 funded, licensed and operated 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. (A) THE PRINCIPLES ENUNCIATED IN SUBDIVISION (D) OF THIS SECTION ARE DECLARED TO BE THE PUBLIC POLICY OF THE STATE AND A COPY OF SUCH STATE- MENT OF RIGHTS SHALL BE POSTED CONSPICUOUSLY IN A PUBLIC PLACE IN EACH PROVIDER OF SERVICES AND RESIDENTIAL FACILITY OPERATED, LICENSED OR FUNDED BY THE OFFICE. FOR PURPOSES OF THIS SECTION, "QUALIFIED FAMILY MEMBER" MEANS A PARENT, SPOUSE, ADULT SIBLING OR AN ADULT CHILD OF THE RESIDENT. (B) THE COMMISSIONER SHALL MAKE AVAILABLE TO EVERY PROVIDER OF SERVICES AND RESIDENCE OPERATED, LICENSED OR FUNDED BY THE OFFICE, ON THE OFFICE'S WEBSITE A COPY OF THE STATEMENT OF RIGHTS PROVIDED IN SUBDIVISION (D) OF THIS SECTION 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, AND SHALL ADOPT ANY RULES AND REGU- LATIONS NECESSARY TO ENSURE THAT SUCH QUALIFIED FAMILY MEMBERS AND GUAR- DIANS ARE TREATED IN ACCORDANCE WITH THE PROVISIONS OF SUCH STATEMENT.EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD10708-15-3 S. 5223--B 2
(C) SUCH RIGHTS SHALL APPLY TO FAMILY MEMBERS DEFINED IN SUBDIVISION (A) OF THIS SECTION PROVIDED HOWEVER, SUCH RIGHTS SHALL NOT APPLY IF AN INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES HAS SPECIFICALLY STATED THAT SUCH FAMILY MEMBERS SHALL NOT HAVE ACCESS TO ANY PERSONAL INFORMATION, BE INVOLVED IN ANY CARE PLANNING OR COORDINATION, OR BE INVOLVED IN ANY HEALTH CARE DECISIONS. (D) THE STATEMENT OF RIGHTS SHALL CONSIST OF THE FOLLOWING: "FAMILY BILL OF RIGHTS" QUALIFIED FAMILY MEMBERS AND GUARDIANS SHALL HAVE THE FOLLOWING RIGHTS IN REGARDS TO AN INDIVIDUAL RECEIVING SERVICES THROUGH PROGRAMS, INCLUD- ING, BUT NOT LIMITED TO, RESIDENTIAL SERVICES, THAT ARE OPERATED, LICENSED OR FUNDED BY THE OFFICE. THESE RIGHTS SHALL INCLUDE: YOU HAVE THE RIGHT TO BE TREATED WITH CONSIDERATION AND RESPECT. YOU HAVE THE RIGHT TO HAVE ACCESS TO A RESIDENCE'S FIRE SAFETY PLAN AND ANY INFORMATION REGARDING A RESIDENCE'S PASSAGE OR FAILURE OF ANY FIRE SAFETY DRILLS CONDUCTED BY THE RESIDENCE AND THE OFFICE. YOU HAVE THE RIGHT TO NOTIFICATION WITHIN A REASONABLE TIME FRAME OF ANY EVENT THAT DIRECTLY IMPACTS THE HEALTH AND SAFETY OF THE INDIVIDUAL, CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS. YOU HAVE THE RIGHT TO HAVE ACCESS TO INFORMATION REGARDING THE HEALTH AND SAFETY OF THE INDIVIDUAL, CONSISTENT WITH FEDERAL AND STATE CONFI- DENTIALITY PROTECTIONS. YOU HAVE THE RIGHT TO HAVE ACCESS TO A RESIDENCE'S FOOD MENUS. YOU HAVE THE RIGHT FOR A QUALIFIED FAMILY MEMBER OR GUARDIAN TO BE ABLE TO HAVE UNANNOUNCED VISITS. YOU HAVE THE RIGHT TO RECEIVE INFORMATION NECESSARY TO MAKE INFORMED DECISIONS, WHEN APPROPRIATE, ABOUT THE CARE OF THE INDIVIDUAL. YOU HAVE THE RIGHT TO HAVE MEANINGFUL PARTICIPATION AND INPUT INTO, AND ONGOING REVIEW AND INVOLVEMENT WITH, THE INDIVIDUAL'S PLAN OF CARE, INCLUDING BUT NOT LIMITED TO ANY DECISION REGARDING APPROPRIATE PLACE- MENT OR TRANSFER OF AN INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES WITHIN A RESIDENCE OPERATED, LICENSED OR FUNDED BY THE OFFICE. YOU HAVE THE RIGHT TO FINANCIAL TRANSPARENCY INCLUDING ACCESS TO BUDG- ETARY INFORMATION OF THE RESIDENCE INCLUDING INDIVIDUAL EXPENSES, CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS. YOU HAVE THE RIGHT TO BE INFORMED REGARDING ANY STAFFING CHANGES. YOU HAVE THE RIGHT TO BE GIVEN CLEAR, UP TO DATE, UNDERSTANDABLE, AND HONEST INFORMATION ABOUT THE SYSTEM OF CARE AND SERVICES FOR PERSONS WITH DEVELOPMENTAL DISABILITIES, INCLUDING BUT NOT LIMITED TO MANAGED CARE. YOU HAVE THE RIGHT TO BE ADVISED IN WRITING OF ANY LAWS, RULES, OR REGULATIONS THAT APPLY TO A QUALIFIED FAMILY MEMBER'S AND GUARDIAN'S ABILITY TO ACCESS INFORMATION OR PARTICIPATE IN DECISIONS ABOUT THE INDIVIDUAL'S LIFE, INCLUDING BUT NOT LIMITED TO, GUARDIANSHIP ISSUES, AND ACCESS TO RECORDS, REPORTS, PLANS OF CARE, AND OTHER PERTINENT INFORMATION. FOR PURPOSES OF MEDICAID WAIVERS OBTAINED BY THE STATE: YOU HAVE THE RIGHT TO CHOOSE A CARE COORDINATOR. YOU HAVE THE RIGHT TO RECEIVE INFORMATION NECESSARY TO MAKE INFORMED DECISIONS, WHEN APPROPRIATE, ABOUT THE CARE COORDINATION OF THE INDIVID- UAL. YOU HAVE THE RIGHT TO INDEPENDENT ADVOCATES. YOU HAVE THE RIGHT TO BE NOTIFIED IN WRITING ABOUT ALL MANDATED PROCE- DURES IF QUALIFIED FAMILY MEMBERS OR GUARDIANS NEED TO CHALLENGE A DECI- SION.S. 5223--B 3
ALL THE ABOVE ARE YOUR RIGHTS. NOTHING IN THIS BILL OF RIGHTS SHALL LIMIT ANY OTHER ACTION OR RELIEF PERMITTED BY LAW. IF THE PROVIDER OR RESIDENTIAL FACILITY DOES NOT HONOR THESE RIGHTS YOU MAY PURSUE HELP BY CONTACTING THE NEW YORK STATE DEPARTMENT OF HEALTH, THE OFFICE FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES OR BY CONTACTING THE RESIDENTIAL FACILITY OR THE PROVIDER OF SERVICES. (E) THE COMMISSIONER SHALL ESTABLISH A PUBLIC EDUCATION PROGRAM TO DISSEMINATE INFORMATION REGARDING IMPLEMENTATION OF THIS SECTION. SUCH INFORMATION SHALL INCLUDE, BUT NOT BE LIMITED TO, PUBLICATION OF THE FAMILY BILL OF RIGHTS AS SPECIFIED IN SUBDIVISION (D) OF THIS SECTION; PUBLICATION OF THE RIGHTS OF QUALIFIED FAMILY MEMBERS AND GUARDIANS OF A PERSON RECEIVING SERVICES FROM A PROVIDER OR IN A RESIDENTIAL FACILITY OPERATED, LICENSED, OR FUNDED BY THE OFFICE; AND PUBLICATION OF CERTAIN PROVISIONS RELATING TO MEDICAID WAIVERS OBTAINED BY THE STATE. S 2. This act shall take effect immediately.