Huttle and Fuentes Sponsor 'Bill of Rights' for Family Members of People with Developmental Disabilities

December 13, 2012 at 7:16 AM

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.

 The Guest Column is our readers' opportunity to write about a given issue or topic in an in-depth and educational manner.

The opinions expressed herein are the writer's alone, and do not reflect the opinions of or anyone who works for is not responsible for the accuracy of any of the information supplied by the writer.

TAP Into Another Town's News:

TAP Into Another Town's News:

Sign Up for E-News


Upcoming Events


Sat, December 10, 9:00 AM

Charlie Brown's of Chatham, Chatham Township

Breakfast with Santa

Food & Drink Giving Back Police & Fire


Sat, December 10, 5:00 PM

Madison Area YMCA - Kids Central, Madison

Parents' Night Out: Date Night

Education Giving Back

Tue, December 13, 11:30 AM

SAGE Eldercare, Summit

Tai Chi

Health & Wellness

To Be a Better Investor, Be More Rational!

Many posit the theory of rational man, who coolly and carefully calculates his self-interest in a logical manner. We all fall somewhat short of that ideal.  In the financial markets, irrationality can be costly. What are some of the common foibles, and what can we do to minimize their damage to our portfolios?

Don’t Make Decisions Based on What You Paid For an Investment

How ...

Chatham Borough Police Make Arrest for Theft, Possession

December 7, 2016

CHATHAM, NJ - A Chatham man was charged with Theft of moveable property, Possession of CDS (Xanax) with the intent to distribute, and Possession of CDS without a valid prescription.

On Nov. 6 at approximately 2:30 p.m., officers responded to the 100 block of Hillside Avenue on a report of a male taking packages from a front porch. A resident reported that she was alerted to the ...

January Open House at the F.M. Kirby Children’s Center of the Madison Area YMCA

December 6, 2016

The F.M. Kirby Children’s Center of the Madison Area YMCA, located at 54 East Street in Madison, will hold an open house on Monday, January 9, and Wednesday, January 11, from 9:30-11 a.m. and 4:30-6:30 p.m.

The F.M. Kirby Children’s Center of the Madison Area YMCA offers curriculum-based, comprehensive childcare and early childhood educational programs for infants, toddlers, ...