Parents of Intellectually Disabled May Soon Get ‘Bill of Rights’

Andrew Kitchenman | December 11, 2012 | Health Care
Panel advances specific rules for how state agencies must deal with families and guardians

The parents and guardians of intellectually or mentally disabled children deserve a “bill of rights” addressing the information and treatment they receive from public agencies and care providers, legislators were told at a hearing on Monday.

The “Bill of Rights for Parents of Persons with Intellectual Disabilities” was approved by the Assembly Human Service Committee after providers testified about the need to improve communication with parents.

The bill includes the right to be treated with consideration and respect; receive information necessary to make informed decisions about the care of a child; receive information in writing; receive return phone calls within a reasonable time frame; get clear information about services; participate in their child’s care; have a method of recourse if they feel their child isn’t receiving adequate and appropriate care; be free from retaliation for complaints; and be advised of laws and rules that apply to their ability to access information and participate in decisions.

The bill requires that all state case managers be provided with a copy of these rights, and that they be posted in appropriate state offices. The bill doesn’t include penalties for failure to provide the rights listed in the bill.

The bill’s sponsor, Assemblyman Angel Fuentes (D-Camden and Gloucester), said the need for such as measure was brought to his attention by The Arc of New Jersey, an organization that advocates for community participation and inclusion for the developmentally disabled and provides services to this population.

“I think it’s the right thing to do to help these parents,” said Fuentes, who said parents can “get caught up in bureaucracies” when dealing with public agencies.

Fuentes added that the parent of a developmentally disabled child in Runnemede told him about the frustration of dealing with state employees.

The bill’s language spells out why the measure is necessary, saying that parents “sometimes face enormous barriers to accessing the supports they need, and often feel overwhelmed and worn down by the very system designed to help them.”
In addition, while parents have legal rights under federal and state special-education laws, “they still face obstacles in asserting their rights and obtaining the appropriate educational opportunities in the least restrictive environment for their children,” the bill states.

Parents will also be required to “provide even more care for a longer period of time for their adult children” as the state reduces its role in providing residential services, according to the bill’s text.
Committee Chairwoman Valerie Vainieri Huttle (D-Bergen), who also sponsored the measure, likened the legislation to a patient bill of rights.

Sharon Levine, governmental affairs director for The Arc of New Jersey, said family members frequently serve as the “de facto case manager” for developmentally disabled individuals.

“In too many cases, family members often meet with barriers” in receiving services that they are entitled to, Levine said.

The bill also was supported by a group fighting a state plan to close two developmental centers, which are state-operated residential facilities.

However, the group — Save Residents’ Homes at Development Centers — did criticize the measure for lacking an enforcement mechanism or penalties for violations.

In a statement, Save Residents’ Homes at Developmental Centers member Joanne St. Amand of Cranford noted that family members of developmental center residents already are protected under federal law.

The Senate version of the bill has been referred to the Senate Health, Human Services and Senior Citizens Committee.