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
PURPOSE: 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 reside in residences that are funded, licensed, and operated by the office.
The bill of rights enumerates several rights that family members and guardians should have in regards to access to information. These rights include: access to fire safety plans, meal menus, immediate notification of an event that impacts the health and safety of an individual, and the right to have input on any decision regarding placement or transfer of an individual with developmental disabilities in a residence, The bill also puts in place certain rights with respect to Medicaid waivers obtained by the state including the right to independent advocates and the right to choose a care coordinator.
A qualified family member includes parents, siblings, spouse, aunts or uncles, grandparents, and the adult child of an individual with developmental disabilities.
Section 2 is the effective date
JUSTIFICATION: 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.
LEGISLATIVE HISTORY: New bill.
FISCAL IMPLICATIONS: To be determined
EFFECTIVE DATE: Effective immediately
STATE OF NEW YORK ________________________________________________________________________ 5223 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 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 (C) 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 RESIDENCE FUNDED, LICENSED AND OPERATED BY THE OFFICE. FOR PURPOSES OF THIS SECTION, "QUALIFIED FAMILY MEMBER" MEANS A PARENT, SPOUSE, SIBLING, GRANDPARENT, AUNT, UNCLE OR AN ADULT CHILD OF THE RESIDENT. (B) THE COMMISSIONER SHALL MAKE AVAILABLE TO EVERY RESIDENCE FUNDED, LICENSED AND OPERATED BY THE OFFICE, ON THE OFFICE'S WEBSITE A COPY OF THE STATEMENT OF RIGHTS PROVIDED IN SUBDIVISION (C) OF THIS SECTION IN 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 REGULATIONS NECESSARY TO ENSURE THAT SUCH QUALIFIED FAMILY MEMBERS AND GUARDIANS ARE TREATED IN ACCORDANCE WITH THE PROVISIONS OF SUCH STATEMENT. (C) 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 A RESIDENT WHO RESIDES IN A RESIDENCE FUNDED, OPERATED OR LICENSED BY THE OFFICE. THESE RIGHTS SHALL INCLUDE:EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD10708-04-3 S. 5223 2
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 IMMEDIATE NOTIFICATION OF ANY EVENT THAT WOULD IMPACT THE HEALTH AND SAFETY OF THE INDIVIDUAL. YOU HAVE THE RIGHT TO HAVE ACCESS TO INFORMATION REGARDING THE HEALTH AND SAFETY OF THE INDIVIDUAL. 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 HAVE INPUT IN ANY DECISION MADE BY THE OFFICE OR LOCAL GOVERNMENTAL UNIT REGARDING THE APPROPRIATE PLACEMENT OF A PERSON WITH DEVELOPMENTAL DISABILITIES WITHIN A RESIDENCE OR THE DECISION TO TRANSFER A PERSON WITH DEVELOPMENTAL DISABILITIES FROM ONE RESIDENCE TO ANOTHER. YOU HAVE THE RIGHT TO FINANCIAL TRANSPARENCY INCLUDING ACCESS TO BUDG- ETARY INFORMATION OF THE RESIDENCE INCLUDING INDIVIDUAL EXPENSES. YOU HAVE THE RIGHT TO ACCESS ALL JUSTICE CENTER REPORTS OF INVESTI- GATIONS OF ALLEGATIONS OF ABUSE AND ANY REPORTS REGARDING FINAL DETERMI- NATIONS REGARDING ANY DEATHS OR ABUSE IN RESIDENTIAL FACILITIES. YOU HAVE THE RIGHT TO BE INFORMED REGARDING ANY STAFFING CHANGES. FOR PURPOSES OF MEDICAID WAIVERS OBTAINED BY THE STATE: YOU HAVE THE RIGHT TO CHOOSE A CARE COORDINATOR YOU HAVE THE RIGHT TO HAVE ACCESS TO ALL DOCUMENTS AND INFORMATION REGARDING CARE AND PROGRAMS YOU HAVE THE RIGHT TO INDEPENDENT ADVOCATES YOU HAVE THE RIGHT TO MANDATED PROCEDURES IF QUALIFIED FAMILY MEMBERS OR GUARDIANS NEED TO CHALLENGE A DECISION ALL THE ABOVE ARE YOUR RIGHTS. IF THE RESIDENTIAL FACILITY DOES NOT HONOR THESE RIGHTS YOU CAN SEEK HELP BY CONTACTING THE NEW YORK STATE DEPARTMENT OF HEALTH OR BY CONTACTING THE RESIDENTIAL FACILITY. (D) 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 (C) OF THIS SECTION; PUBLICATION OF THE RIGHTS OF QUALIFIED FAMILY MEMBERS AND GUARDIANS OF A RESIDENT WHO RESIDES IN A RESIDENCE FUNDED, OPERATED OR LICENSED BY THE OFFICE; AND PUBLICATION OF CERTAIN PROVISIONS RELATING TO MEDICAID WAIV- ERS OBTAINED BY THE STATE. S 2. This act shall take effect immediately.