Over the past two years, countless parents and family members of New Jerseyans with Developmental Disabilities who are in residential care have complained about their inability to take a more active role in protecting the civil and human rights of their vulnerable loved one. Quite often, the family is barred from investigations that are the result of reports of abuse, neglect and exploitation. In addition, family members contendthat have are allowed to provide limited input in the planning of programs for their disabled relative.
Several legislators have attempted to resolve this dilemma over the past two years. Assemblywoman Pamela Lampitt (Democrat, 6th Legislative District) introduced legislation during the last session of the State Legislature that would allow family members to use an audio recording device at planning meetings that will determine the disabled individual’s program.
In the fall of 2011, this writer was besieged by complaints from a family member who said that she was constantly denied the opportunity to take part in the planning of a program for her developmentally disabled sister. Assemblyman Patrick Diegnan (Democrat, 18th Legislative District) also serves as a primary sponsor for the proposed legislation.”
According to the language of the bill:
“This bill provides that a person with a developmental disability who resides in a facility [...] or the person’s legal guardian, when applicable, may use an audio recording device during a meeting of, or telephone or face-to-face conversation with, any member of the person’s interdisciplinary team and any psychiatrist contracted by the facility to provide consultation services, provided that the person or legal guardian notifies the other participants prior to the start of the meeting or telephone or face-to-face conversation, as applicable, that a recording device will be used.”
The bill also points out that:
“An interdisciplinary team is responsible for the development of a single, integrated individual habilitation plan for a person with a developmental disability. The team typically consists of: the person receiving services; the person’s legal guardian; the parents or family member of the person (at the preference of the person served or guardian); those individuals who work most directly with the person served; and professionals and representatives of service areas who are relevant to the identification of the person’s needs and the design and evaluation of programs to meet them.”
Family members have been fighting for several years for the opportunity to be more involved in their disabled relative’s program. The Lampitt-Diegnan bill, if passed, can only provide an avenue for greater family involvement. This would be a welcome sign for family members who feel “helpless” regarding their son, daughter or relative’s safety and progress in developing in independent living skills. For many, progress is occurring much too slowly.
Dr. Salvatore Pizzuro, a disability policy specialist, holds a doctorate in Developmental Disabilities from Columbia University and an advanced degree in Disability Law from New York Law.