(TRENTON) – Legislation by Assemblyman Angel Fuentes (D-Camden/Gloucester) to establish a bill of rights for the parents and siblings of persons with developmental abilities was approved today by the General Assembly.
“Parents and siblings of individuals with disabilities are deeply involved in the decisions that affect the health and well-being of their loved-one,” said Assemblyman Fuentes. “It is vital that they receive the support and resources needed for them to adequately make informed, meaningful decisions as they navigate the healthcare system.”
The bill states that an authorized family member of a person with a developmental disability shall have the right:
• 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, ongoing review of, and involvement with, the person’s plan of care, including, but not limited to, an individual family service 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; 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 person’s life, including by not limited to guardianship issues and access to records, reports, plans of care and other pertinent information.
“When it comes to individuals with disabilities, family members should be treated as partners in care and afforded the proper respect that role demands,” added Assemblyman Fuentes. “With this Bill of Rights, we are paving the way for the health care industry to recognize that role and make the appropriate changes in the way they coordinate with these individuals.”
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.
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