Bill Text: NJ S2951 | 2010-2011 | Regular Session | Introduced
Bill Title: Establishes bill of rights for parents of persons with developmental disabilities.
Spectrum: Partisan Bill (Democrat 1-0)
Status: (Introduced - Dead) 2011-06-13 - Introduced in the Senate, Referred to Senate Health, Human Services and Senior Citizens Committee [S2951 Detail]
Download: New_Jersey-2010-S2951-Introduced.html
Sponsored by:
Senator JEFF VAN DREW
District 1 (Cape May, Atlantic and Cumberland)
SYNOPSIS
Establishes bill of rights for parents of persons with developmental disabilities.
CURRENT VERSION OF TEXT
As introduced.
An Act concerning the rights of parents of persons with developmental disabilities and supplementing Title 30 of the Revised Statutes.
Be It Enacted by the Senate and General Assembly of the State of New Jersey:
1. The Legislature finds and declares that:
a. Parents of persons with developmental disabilities, including intellectual disabilities, dedicate their lives to their children, and these parents are an integral part of the framework that supports their children's health, quality of life, and general well-being;
b. Parents, however, 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;
c. While parents have legal rights under the federal "Individuals with Disabilities Education Act" and other federal and State laws concerning special education, unfortunately, they still face obstacles in asserting their rights and obtaining the appropriate educational opportunities in the least restrictive environment for their children;
d. Parents are also the primary advocates for their children when accessing the health care system, and often manage extremely complex diagnoses and treatments within the ever-changing and tremendously complicated system;
e. Parents of persons with developmental disabilities also are generally the primary providers of services and supports for their loved ones, often at extraordinary financial, physical, and emotional costs; as the Division of Developmental Disabilities in the Department of Human Services continues to move away from providing residential services, parents will be required to provide even more care for a longer period of time for their adult children;
f. Even when a person with a developmental disability is receiving services from the adult service system, parents often serve as the de facto case manager, coordinating their adult child's care, managing services, and ensuring quality and continuity of care; and
g. It is in the public interest to declare a bill of rights for parents of persons with developmental disabilities to increase sensitivity about the role of these parents among the State agencies, health care professionals, service providers, school personnel, and other agencies that parents rely on to support their children.
2. a. A parent of a person with a developmental disability, regardless of whether the parent is the guardian of the person, shall have the right:
(1) To be treated with consideration and respect;
(2) To receive information necessary to make informed decisions, when appropriate, about the care of a child;
(3) To receive information and correspondence in writing;
(4) To receive return phone calls within a reasonable time frame;
(5) To be given clear, up-to-date, understandable, and honest information about the system of services for persons with developmental disabilities;
(6) To be given clear information about the parent's status within the service system and what the parent can reasonably expect from it currently and in the future;
(7) To have meaningful participation and input into, and ongoing review and involvement with, a child's plan of care, including, but not limited to, an individual family service plan, individualized education plan, essential lifestyle plan, and individualized habilitation plan;
(8) To have a method of recourse if the parent feels a child's plan of care is not being implemented or the child is not receiving adequate care appropriate to the child's needs;
(9) To be free from retaliation if a complaint is made; and
(10) 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 child's life, including, but not limited to, guardianship issues and access to records, reports, plans of care, and other pertinent information.
b. A listing of the rights set forth in this section shall be designated as the "Bill of Rights for Parents of Persons with Developmental Disabilities," and shall be prepared and distributed by the Division of Developmental Disabilities in the Department of Human Services to every case manager of a person with a developmental disability. The listing shall be posted in a conspicuous place in each office of the Divisions of Developmental Disabilities and Disability Services in the Department of Human Services, and in a State developmental center listed in R.S. 30:1-7.
3. This act shall take effect on the first day of the third month following the date of enactment.
STATEMENT
This bill establishes a bill of rights for parents of persons with developmental disabilities, including intellectual disabilities, as follows:
A parent of a person with a developmental disability, regardless of whether the parent is the guardian of the person, shall have the right:
· To be treated with consideration and respect;
· To receive information necessary to make informed decisions, when appropriate, about the care of a child;
· 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 parent'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 and involvement with, a child's plan of care, including, but not limited to, an individual family service plan, individualized education plan, essential lifestyle plan, and individualized habilitation plan;
· To have a method of recourse if the parent feels a child's plan of care is not being implemented or the child is not receiving adequate care appropriate to the child's needs;
· 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 child's life, including, but not limited to, guardianship issues and access to records, reports, plans of care, and other pertinent information.
The bill provides that the listing of these rights shall be designated as the "Bill of Rights for Parents of Persons with Developmental Disabilities." 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.
