N.J. disabled, workers debate closing of five developmental facility

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By Susan K. Livio/Statehouse Bureau

May 07, 2010, 6:49PM

TRENTON — Anticipating action soon on a controversial bill that calls for closing five of the seven institutions for people with developmental disabilities, hundreds of families, disabled people and state and private workers today appeared before a special legislative panel to debate the future without these facilities.

Some who used to live in these institutions, also known as developmental centers, pleaded with legislators to allow more people to leave and lead more independent lives.

"I am happy living in the community, I have my own apartment, I have a cat, I have a boyfriend,'' said Adelaide Daskam of Plainfield, who left the North Jersey Training School 31 years ago. Like her, she said, "A lot of my brothers and sisters are glad they have their freedom.''

But there was equally emotional testimony from parents who argue their disabled children are safer and better cared for at the developmental centers, where employees are better compensated and trained and have established relationships with their clients.

Carol Mastropolo, president of the New Lisbon Developmental Center Family and Friends organization, said her son "loves'' where he has lived for the last 29 years.

"Some people are under the impression they languish in the developmental centers, but he is so busy, He goes to a workshop every day to make some money, he participates in the Special Olympics, he goes to basketball games, baseball games ... he is happy here,'' Mastropolo said of the facility, located in Burlington County.

Don Klein, executive vice president of Local 1040 Communications Workers of America, the union that represents many developmental center workers, warned lawmakers of "unscrupulous companies out there that if they do not turn a profit they leave and abandon clients.''

Experts say people with developmental disabilities - who often have serious medical and behavioral problems - need a continuum of care - group homes, supervised apartments and developmental centers.'

It is not clear when either the Assembly and Senate human services committees will hold formal hearings on the bill, (A1673/S811), calling for the closure of any developmental centers. But the chairs of both committees who held the four-hour meeting said they wanted input from the people who would be affected by the vote.

“This hearing is a tremendous starting point for everyone to work together to ensure every developmentally disabled person in New Jersey gets the services they need,'' Assembly Human Services Committee Chairman Valerie Vainieri Huttle (D-Bergen) "This is a difficult issue and one that won’t be easily solved, but it’s also one we must confront.''

Lowell Arye, executive director of the Alliance for the Betterment of Citizens with Disabilities, a lobbying and advocacy group for community home providers, said housing options outside of institutions are slim because the state has for too long pocketed the federal Medicaid reimbursement that comes from providing community housing. In fiscal year 2007, for instance, the state received $194 million in federal funds. Yet Treasury officials allowed only $50 million over three years to be used to support and expand community housing. "The other $144 million were used by the state for other purposes,'' he said.

Deborah Spitalnik, executive director of the Elizabeth Boggs Center on Developmental Disabilities, urged lawmakers to "consolidate and rebalance the system" by using the money saved by closing developmental centers to fund smaller community housing and providing more services to people living with their families. Some 70 percent of the people with disabilities like autism and mental retardation live in their family home, and get little in the way of services from the state.

"No one is disputing the needs of people in developmental centers, But there are people who have the same needs who are living with their families.'' Spitalnik added, noting that parents and siblings are getting up in the middle of the night to change diapers, or are using feeding tubes and ventilators to take care of their loved ones.

Sen. Joseph Vitale (D-Middlesex) vice-chairman of the Senate Health Human Services and Senior Citizens Committee, called the hearing "a great first step in creating an overdue dialogue on how to improve services for people with developmental disabilities.'' They "deserve our respect, and they deserve a level of care and support which is appropriate and meets their personal care needs,'' he said.