Bill Text: NJ A3478 | 2020-2021 | Regular Session | Introduced
Bill Title: Establishes bill of rights for authorized family members of persons with developmental disabilities.
Spectrum: Partisan Bill (Democrat 1-0)
Status: (Introduced - Dead) 2020-02-25 - Introduced, Referred to Assembly Human Services Committee [A3478 Detail]
Download: New_Jersey-2020-A3478-Introduced.html
Sponsored by:
Assemblywoman VALERIE VAINIERI HUTTLE
District 37 (Bergen)
SYNOPSIS
Establishes bill of rights for authorized family members of persons with developmental disabilities.
CURRENT VERSION OF TEXT
As introduced.
An Act concerning the rights of authorized family members 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. Authorized family members of persons with developmental disabilities, including intellectual disabilities, dedicate their lives to persons with developmental disabilities who are their relatives, and authorized family members are an integral part of the framework that supports the health, quality of life, and general well-being of persons with developmental disabilities;
b. These authorized family members 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 authorized family members have legal rights under federal and State laws, they still face obstacles in asserting their rights and obtaining the appropriate educational, social, recreational, residential, and employment opportunities for persons with developmental disabilities in the least restrictive environment;
d. Authorized family members are also the primary advocates for persons with developmental disabilities when accessing the health care system, and they often manage extremely complex diagnoses and treatments within this ever-changing and tremendously complicated system;
e. Authorized family members 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;
f. Even when a person with a developmental disability is receiving services from the adult service system, an authorized family member often serves as the de facto case manager, coordinating care, managing services, and ensuring quality and continuity of care of the person with a developmental disability; and
g. It is in the public interest to establish a bill of rights for authorized family members of persons with developmental disabilities in order to increase sensitivity about the role of theses family members among the State agencies, health care professionals, service providers, and other agencies that authorized family members rely on to support their loved ones.
2. a. For the purposes of
this act, an "authorized family member" is a parent who is a guardian
of a person with a developmental disability, or a relative of a person with a
developmental disability who is authorized by the person's guardian, or
by the person if the person is his own guardian, to receive information
concerning the person with a developmental disability. The authorized family
member of a person with a developmental disability shall have the right:
(1) to be treated with consideration and respect;
(2) to receive information necessary on a need-to-know basis to make informed decisions, when appropriate, about the care of the person;
(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 authorized family member's status within the service system and what the family member can reasonably expect from the service system currently and in the future;
(7) 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;
(8) 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 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 regarding the ability to access information or participate in decisions about the person's life, including, but not limited to, guardianship issues and access to records, reports, plans of care, and other pertinent information.
b. The rights set forth in subsection a. of this section shall be designated as the "Bill of Rights for Authorized Family Members of Persons with Developmental Disabilities," and a list of these rights 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 list 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, in each State developmental center listed in R.S. 30:1-7, and in each group home operated or overseen by the Division of Developmental Disabilities.
3. This act shall take
effect on the first day of the third month next following the date of
enactment.
STATEMENT
This bill establishes the "Bill of Rights for Authorized Family Members of Persons with Developmental Disabilities." The bill defines "authorized family member" as a parent who is a guardian of a person with a developmental disability or a relative of a person with a developmental disability who is authorized by the person's guardian, or by the person if the person is his own guardian, to receive information concerning the person with a developmental disability.
Under the bill, an authorized family member of a person with a developmental disability has the following 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 the 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 can reasonably be expected currently and in the future; to have meaningful participation and input into, and ongoing review and involvement with, the person's plan of care; 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 needs; to be free from retaliation if a complaint is made; and to be advised in writing of any laws, rules, or regulations regarding the ability to access information or participate in decisions about the person's life, including, but not limited to, guardianship issues and access to records, reports, plans of care, and other pertinent information.
The "Bill of Rights for Authorized Family Members of Persons with Developmental Disabilities" is to be distributed to every case manager of a person with a developmental disability. It is also to be posted in a conspicuous place in each office of the Divisions of Developmental Disabilities and Disability Services in the Department of Human Services, in each State developmental center, and in each group home operated or overseen by the Division of Developmental Disabilities.
