Lawmakers Seek to Improve Care of Developmentally Disabled

Lilo H. Stainton | March 12, 2019 | Health Care
Assembly committee approves ‘bill of rights’ for family members and a study of how caregivers and emergency personnel respond during a crisis

Credit: NJTV News Online
Craig Cambeis, with his sister and sole caretaker Adele Barlow
Family members of people with developmental disabilities would have a legal right to information regarding treatment of their loved one — and to get prompt, clear and respectful responses from public agencies and care providers — under a “bill of rights” proposal that advanced Monday.

The Assembly Human Services committee voted unanimously in favor of both this bill and another measure designed to improve emergency care for some of the Garden State’s most vulnerable residents. Advocacy organizations also offered their support for the measures.

The “bill of rights,” first introduced nearly eight years ago, would require that agencies and organizations serving individuals with developmental disabilities provide information and access to certain authorized family members. The second proposal would require state officials to study certain emergency responses involving individuals with disabilities and propose a uniform protocol for addressing these types of crises.

The champion of both bills, Assemblywoman Valerie Vainieri Huttle (D-Bergen), said they grew out of concerns she has heard from family members struggling over the care of individuals with severe developmental disabilities.

“It has always been an issue for guardians and family members to gather information” about their loved ones, she told the committee. “It’s not as urgent as it used to be,” she added, “But with that said, it’s always better to codify something into law.”

Creating a 10-point bill of rights

Some of these challenges were profiled in a four-part series reported by Briana Vannozzi of NJTV News, a sister organization of NJ Spotlight. An estimated 150,000 Garden State residents have intellectual or developmental disabilities, advocates note.

New Jersey law already guarantees individuals with disabilities certain rights — including privacy, respect, and the right to associate with others as they choose.

The Garden State is not alone in its quest to expand protections for guardians. Legislation under consideration in New York would provide similar rights to family members who are legal guardians of an individual with developmental disabilities under some circumstances.

The family-members bill, (A-3477) sponsored by Vainieri Huttle alone, would create a 10-point “Bill of Rights for Authorized Family Members of Persons with Developmental Disabilities;” it also would define “authorized family members” as a parent who is already a legal guardian, or another relative named by the legal guardian.

In addition to requiring respectful interaction, the legislation would give authorized family members the right to receive basic treatment and medical information needed to make an informed decision, to be provided with responses in writing, and to have calls or questions addressed in a reasonable amount of time and in language that is “understandable.” It would also require service providers to outline what families should expect and explain the options available if they feel their loved one is not getting adequate care.

Requirements that are ‘hard to legislate’

Vainieri Huttle said some of these requirements, like respect, are “certainly hard to legislate,” but she said having them as part of a law could help encourage greater collaboration.

“Some of these are things that should be common sense,” added Assemblywoman Joann Downey (D-Middlesex), the chair of the Human Services committee. But she agreed there is a need to codify the points to ensure family members get the information they need and the treatment they deserve.

The bill-of-rights concept dates back to the spring of 2011, but has gained little traction among lawmakers — despite its apparent popularity on both sides of the aisle. In January 2013 a similar bill passed the Assembly with unanimous support, but the measure has yet to take flight in the Senate.

The second proposal (A-4916) sponsored by Vainieri Huttle, Downey and Assemblyman Eric Houghtaling (D-Ocean), made its debut in mid-January. It requires the Commissioner of Human Services to review relevant calls made by organizations that serve or shelter individuals with developmental disabilities to the 9-1-1 system and county mental-health agencies, as well as the response from those emergency providers.

In particular, state officials would be required to determine if the calls resulted in an individual being removed from the facility where the incident occurred, where that individual was relocated, and what care plans were provided.

In addition, the Human Services department would need to come up with a uniform procedure for responding to these types of emergencies and also ensure that state resources for this work are being properly used. Vainieri Huttle said greater consistency with these processes would benefit both individuals and their family members.

The bill would take effect immediately and give the DHS commissioner one year to report the agency’s findings to the Legislature. A companion version, introduced by Sen. Joseph Cryan (D-Union) in early February, has yet to be reviewed by the Senate health committee.