To ensure families of persons with developmental disabilities receive the information, support and respect they need and deserve, a measure sponsored by Assemblywoman Valerie Vainieri Huttle to establish a bill of rights for such families was advanced on Monday by the Assembly Human Services Committee.
“Parents and other relatives of individuals with autism, cerebral palsy, and other developmental disabilities dedicate their lives to ensuring their loved ones have the highest quality of life possible,” said Vainieri Huttle (D-Bergen). “While parents or guardians have legal rights in caring for their loved ones, many find significant obstacles to accessing resources and services. Creating a bill of rights for family members will clearly establish their role in the life of a person with developmental disabilities, and make it easier for them to navigate the person’s care.”
The bill (A-3477) would establish the “Bill of Rights for Authorized Family Members of Persons with Developmental Disabilities.” An authorized family member would be defined as a parent who is a guardian of a person with a developmental disability, or a relative who is authorized by the person’s guardian or by the person if they are their own guardian, to receive information concerning the person with a developmental disability.
The authorized family member would have the right:
1) to be treated with consideration and respect;
2) to receive information necessary on a need-to-know basis to make informed decisions, when appropriate, about the care of the person;
3) to receive information and correspondence in writing;
4) to receive return phone calls within a reasonable time frame;
5) to be given clear, up-to-date, understandable, and honest information about the system of services for persons with developmental disabilities;
6) to be given clear information about the authorized family member’s status within the service system and what the family member can reasonably expect from the service system currently and in the future;
7) to have meaningful participation and input into, and ongoing review of and involvement with, the person’s plan of care, including, but not limited to, an individual family service plan, essential lifestyle plan, and individualized habilitation plan;
8) to have a method of recourse if the authorized family member feels the person’s plan of care is not being implemented or the person is not receiving adequate care appropriate to the person’s needs;
9) to be free from retaliation if a complaint is made; and
10) to be advised in writing of any laws, rules, or regulations regarding the ability to access information or participate in decisions about the person’s life, including, but not limited to, guardianship issues and access to records, reports, plans of care, and other pertinent information.
“No one understands the needs of someone with developmental disabilities quite like their family members,” said Vainieri Huttle. “An established bill of rights will help their loved ones become stronger, better informed advocates for their health and well-being.”
Under the bill, a list of rights would be required to be prepared and distributed by the Division of Developmental Disabilities (DDD) in the Department of Human Services (DHS) to every case manager of a person with a developmental disability. The list would also be posted in a conspicuous place in each office of the Divisions of Developmental Disabilities and Disability Services in the Department of Human Services, in each State developmental center, and in adult group homes overseen by the DDD.
The measure now heads to the Assembly Speaker for further consideration.