Parents and family members of New Jersey’s people with developmental disabilities have long been struggling to have more input in the designing of programs for their vulnerable loved ones. Now, legislation has been introduced that may provide the opportunity for that input. Assemblywoman Valerie Huttle (Democrat, Bergen), Chair of the Human
Services Committee, has introduced a “Bill of Rights” legislation for the families of people with Developmental Disabilities. Assemblyman Angel Fuentes (Democrat, Camden) is also a primary sponsor of this legislation. The bill was advanced by the Human Services Committee on Monday, December 10, 2012.
According to Fuentes:
"Family members of persons with developmental disabilities dedicate their lives to their children, and these parents are an integral part of supporting their children's health, quality of life and general well-being,……But these parents and siblings sometimes face enormous barriers to accessing the support they need, and often can feel overwhelmed
and worn down by the very system designed to help them. We need to make sure their legal rights are always protected."
Assemblywoman Huttle points out that:
"Parents and siblings are also the primary advocates for their children when accessing the health care system, and they often manage extremely complex diagnoses and treatments within the ever-changing and tremendously complicated system ... It's the right thing to do to offer a bill of rights for the authorized family members of persons with developmental disabilities to increase sensitivity about their role among state agencies, health care professionals, service providers, school personnel and other agencies that parents rely on to support their loved ones."
The bill, if passed, will establish that family members shall have the following basic rights:
- To be treated with consideration and respect
- To receive information necessary on a need to know basis to make informed decisions, when appropriate, about the care of a person
- To receive information and correspondence in writing
- To receive return phone calls within a reasonable time frame
- To be given clear, up-to-date, understandable, and honest information about the system of services for persons with developmental disabilities
- To be given clear information about the authorized family member's status within the service system and what the parent can reasonably expect from it currently and in the future
- 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
- 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 need
- To be free from retaliation if a complaint is made
- To be advised in writing of any laws, rules, or regulations that apply to a parent's ability to access information or participate in decisions about a person's life, including, but not limited to, guardianship issues and access to records, reports, plans of care, and other pertinent information.
The bill specifies that authorized family members would be identified by the Department of Human Services, and a listing would be prepared and distributed to the every case manager of a person with a developmental disability... In addition, the listing will be posted in a State developmental center.
For several years, family members have complained that they have not been partners in the process of overseeing their relative’s program. Hopefully, this bill will rectify the problem.
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