The Alternative Press

Parents and family members of New Jerseyans with developmental disabilities who reside in State living facilities are applauding the General Assembly for unanimously passing a “bill of rights” that will ensure that family members will have more input regarding the programs and services delivered to their loved ones.

The bill, which passed by a margin of seventy-four to zero, was sponsored by Valerie Huttle (D-Bergen, Angel Fuentes (D-Camden), Albert Coutinho (D-Essex), Cleopatra Tucker (D-Essex) and Ruben Ramos (D-Hudson).

The bill now awaits Senate approval, where the sponsors are Jeff Van Drew (D-Cape May), Jennifer Beck (R-Monmouth) and Barbara Buono (D-Middlesex). If passed by the Senate and signed by the Governor, the bill will ensure that family members will 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
• 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.

According to Assemblywoman Huttle:

“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.”

Coutinho points out that:

“Navigating the health care system can be difficult and often frustrating for parents looking for ways to help their children reach their full potential... 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.”

The Division of Developmental Disabilities would be responsible for identifying authorized family members and making pertinent information available to them, openly and with transparency. Often, parents and family members consider themselves to be the sole defenders of the rights of people with developmental disabilities, who are often voiceless individuals who cannot lodge their own complaints or fight for their own rights. Therefore, the bill will not only grant specific rights to family members, but to the developmentally disabled residents of State facilities, as well.

As Assemblywoman Tucker suggests:

“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... 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.”

Parents are urging the Senate and the Governor to approve the bill, without delay.