NJ could give ‘bill of rights’ to relatives of developmentally disabled
TRENTON — A pair of bills unanimously passed the Assembly Human Services Committee are intended to protect New Jersey residents with developmental disabilities and their families.
Assemblywoman Valerie Vaineri Huttle, D-Bergen, said for the past eight years she has been advocating for persons with developmental disabilities and their families because she often would hear stories of glaring gaps in care for their loved ones, whether it was getting through to talk to someone for services, or whether it was not being able to get information on their family members.
She said things have come a long way with the appointment of an ombudsman whose job is to let families understand what their rights are and what services were available. But it still was not enough.
So the "bill of rights" proposal allows those with developmental disabilities and their families to be treated with respect. The other part of the legislation would be for families to receive information on a need-to-know-basis. Often, authorized family members would call between monthly or quarterly meetings to find out some information about their loved ones so they could make important decisions. But they found it very difficult to get that information, she said.
Other rights guaranteed by the bill for an authorized family member of a person with a developmental disability:
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.
The bill of rights originally came about in 2011 but received little traction, but Huttle believes there is a much greater response this time around. She said we are growing older, therefore the family members are growing older and they need protection and security from the state.
The second proposal that Huttle backs creates an emergency response evaluation from the Department of Human Services, which would review 911 calls by centers or schools for the developmentally disabled and find out what percentage of those calls resulted in a removal of an individual from a facility.
Huttle said this would help make sure emergency services are provided within a reasonable time frame.
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