(TRENTON) – Legislation sponsored by Assembly Democrats Angel Fuentes, Valerie Vainieri Huttle, Albert Coutinho, Cleopatra Tucker and Ruben Ramos to establish a bill of rights for the parents and siblings of persons with developmental disabilities was approved 74-0 Monday by the Assembly.
“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,” said Fuentes (D-Camden/Gloucester). “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.”
“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,” said Vainieri Huttle (D-Bergen). “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 states that an authorized family member of a person with a developmental disability shall have the right:
· 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; and
· 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.
“Navigating the health care system can be difficult and often frustrating for parents looking for ways to help their children reach their full potential,” said Coutinho (D-Essex). “Improving access to services and information meant to help children with developmental disabilities is essential to the well being of these children. This bill reinforces the rights of parents and by extension their children to adequate services, timely information and protection from retaliation if their needs are not being met.”
“There are no greater allies for children with developmental disabilities than their parents. They are the ones who are at the forefront making sure these children get the assistance they need, and we should make sure that the system that was created to help them is equally supportive,” said Tucker (D-Essex). “This bill of rights recognizes the important role that these parents play in the well-being of their children, and ensures that they not only get the assistance, but the respect that they deserve.”
“Half the battle for many of these families is navigating the system. It can be complicated and frustrating and can end up alienating the very people it is supposed to help,” said Ramos (D-Hudson). “This bill of rights ensures that family members charged with the care of relatives with developmental disabilities have access to the information and services that will enhance the quality life of their loved ones, and the ability to challenge the system if the best interest of their loved ones is not being met.”
The bill provides that the listing of these rights shall be designated as the “Bill of Rights for Authorized Family Member with Developmental Disabilities.”
An authorized family member is a parent who is a guardian of a person with a developmental disability, or a relative of a person with a developmental disability who is authorized by the person’s guardian, or by the person if the person is his own guardian, to receive information concerning the person with a developmental disability.
The Division of Developmental Disabilities in the Department of Human Services would be required to prepare and distribute the listing to every case manager of a person with a developmental disability. The listing also must be posted in a conspicuous place in each office of the Divisions of Developmental Disabilities and Disabilities Services in the state and in each of the state developmental centers.
The bill will now be referred for further consideration by the Senate.
