Wednesday, November 06, 2002

BY SUSAN K. LIVIO AND TED SHERMAN
Star-Ledger Staff

Dawn Miller became a special-education expert after she discovered there were no after-school openings for her 8-year-old autistic son. She hired an instructor and they created their own program.

Michael Jankowsky, 38, gets round-the-clock care at an out-of-state residential program because he had bad experiences with facilities for the mentally retarded in New Jersey.

Ellie Byra's 26-year-old son, Matthew, is mentally retarded, cannot speak or hear and walks with some help. But he's also a graduate of Hunterdon Central High School and a wage earner. He shreds paper at Hunterdon Medical Center, stocks shelves at a food pantry. And when his name reaches the top of the waiting list for state housing, the Byra family has no intention of parting with him or disrupting the routine they've worked carefully to construct.

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Many families fed up with the limited services available to the developmentally disabled in New Jersey simply take matters into their own hands.

"It's very frustrating," bristled Miller. "People are really on their own."

Critics lay the blame not only on the state bureaucracy but on advocacy groups who, they say, have been far too timid to confront the state over the conditions at institutions, or over the snail's pace with which people move into community housing.

National civil rights attorney Stephen Gold of Philadelphia said advocates' inaction in New Jersey has allowed the state to fall "30 years behind the rest of the country" in integrating disabled people with the rest of society.

"The problem is, no one is looking at this as a civil rights issue," Gold declared. "Those who say the institutions are okay should go live in them for a weekend and see how they like it. The developmental disability community has to totally sever any amicable relationship with the state and take them on."

Faced with the failure of institutions to pass federal inspections, and complaints from families, the state Department of Human Services recently dedicated $27 million to hire more staff, improve training and make building repairs at the institutions.

And beginning in July, Commissioner Gwendolyn L. Harris promises to roll out a system that will spend more money to help families care for their disabled loved ones in their homes -- an option she said at least one in four families prefers to a spot in a group home.

But improvements in how the state cares for the developmentally disabled will not come on their own, said researcher Susan Parish, a post-doctoral Fellow at the Waisman Center, University of Wisconsin-Madison, a national center dedicated to the study of developmental disabilities.

"It takes some political will, and it takes pressure from advocates, and that is really not forthcoming in New Jersey," said Parish, who has worked in the state. "I don't think litigation is the answer for everything, but in states like New Jersey that have this massive institution population, it's a fantasy that they are going to go there on their own."

FOR LACK OF RESOURCES

Over the years, the system has created activists out of frustrated parents such as Alex Gallione of Northvale in Bergen County. Gallione, whose son has cerebral palsy, said when he first turned to the state, it did not even offer the kinds of services he required. "They excluded kids like my son," he said.

Exasperated, Gallione and four mothers formed a nonprofit group, Spectrum for Living, 20 years ago. Spectrum opened one of the first group homes in New Jersey and now runs a network of community homes throughout the state. In Closter, Bergen County, it also operates one of only two private developmental centers, winning praise from the Centers for Medicare and Medicaid Services for an operation that was found to be 100 percent in line with federal standards and guidelines -- in contrast to the dismal showing by the state's institutions.

While the most effective advocates for the developmentally disabled in New Jersey may be their families, many lack the resources to provide for their loved ones.

Sally Jankowsky of Toms River, whose son is living at a residential program in Pennsylvania, is pinning her hopes on a little-known New Jersey program known as "self-determination," which would give the family the funds and the authority to hire their own staff and put an addition on their house so Michael "has his own space."

The program is slow going. A state Human Services employee told Jankowsky her son won't move until 2004 at the earliest. James W. Smith, director of the Division of Developmental Disabilities, said the state is still working with people whose names came up on a waiting list for a group home two years ago.

THE NO-LAWSUIT STRATEGY

In other states, advocacy groups work as strong adversaries on behalf of people like Jankowsky -- going to court over failures by government to provide appropriate housing or education. Not here. Most advocacy groups in New Jersey, however, receive state contracts for services or residential and day programs. They have been reluctant to speak out against the system.

This past summer, Gold offered to bring a class-action lawsuit on behalf of the 3,300 people in the state's seven developmental centers -- many of whom would rather live in their own homes. But in July, the state's leading advocacy group, the N.J. Developmental Disabilities Council, rejected his offer.

The council's executive director, Ethan Ellis, said he wasn't afraid to take a stand against the state. He said he had contemplated the pros and cons of waging a court battle and concluded the time had not yet come for that drastic step.

"Part of the problem with litigation is you litigate on behalf of a class of individuals, and if you win, that class gets everything; the other people get nothing," said Ellis, 68, who has cerebral palsy.

Ellis notes that freshman Gov. James E. McGreevey's administration has committed millions of dollars to make the institutions safer. The administration is preparing a long-range plan to reduce the waiting list for community housing, Ellis said.

"So far, the new guys have come in and listened," he said, adding, "As long as that commitment seems genuine, I am going to go with it."

Gold calls the strategy a dead end. The time is long past for giving the state another chance, he said.

In Pennsylvania, advocates did go to court when institutions for the developmentally disabled failed numerous inspections. Their action triggered the closure of failing facilities and a shift in focus toward moving people into the community.

Linda Drummond, executive director of the Arc of Pennsylvania, said cooperation is always the goal. "We work with our legislators and state departments. But sometimes you bang your head for a while, and the only option is to litigate."

The pressure of a class-action lawsuit filed in 1974 triggered the 1987 closure of the Pennhurst School and Hospital, deemed inhumane, unsanitary and unsafe, Drummond said.

New Jersey advocates for the disabled defend their record. "It's not fair criticism," said Thomas Baffuto, executive director the Arc of New Jersey, formerly the Association for Retarded Citizens, a leading advocacy group. "There was enormous advocacy on our part. We didn't back off."

Baffuto said the Arc had devoted a lot of its resources to increasing community services, including the passage of a $160 million bond issue in 1995 to build group homes.

"My feeling is, right or wrong, we spent an awful lot of time on those children on the waiting list," Baffuto said. "Was it at the expense of those living in the developmental centers? I don't know. The priority was that there was nothing happening for those folks living at home and getting nothing."

CANVASSING THE STATE

The McGreevey administration, meanwhile, said it has listened to complaints from parents and is getting ready to focus attention on making the system more family-friendly.

After months of questioning by The Star-Ledger about problems in developmental disabilities programs, the state Department of Human Services announced a plan in September to provide more in-home assistance for families.

During the fiscal year that begins in July, case managers will fan out across the state and ask families what services they could use to take better care of their disabled loved ones.

Currently, people must put their names on a waiting list for a one-size-fits-all benefits package that focuses on obtaining a placement in a group home. "We've offered no other way to access services for people with developmental disabilities," Harris, the Human Services commissioner, said. While the state will continue to find housing for disabled people who want it, the division for the first time will "also budget for individuals leaving special education, so people are able to maintain and build upon the skills they've learned in school."

The shift is aimed at reducing the pressure on the notoriously long community waiting list for housing, topping out near 7,000 people. One in four families on the list isn't ready to trade the family home for a group home when the loved one's name is called, said Harris.

The state's own inspection system, which failed to detect the serious systemic problems inside New Jersey's developmental centers, has also gotten a makeover. A four-person inspection team has received intensive training at the headquarters for the Centers for Medicare and Medicaid in Baltimore, said Elinor Fritz, the Department of Health and Senior Services' director of the Long-Term Care Assessment and Survey.

"We are focusing more on residents' rights issues and restraint issues and those types of things. We always looked at those, but it appears the (federal government) has a big focus on those issues," Fritz said.

Families are hoping to see evidence of the state's declared commitment. For grown children living in the developmental centers, those places are still home, their parents say.

"I would die if this place closed," said Marion Mazziotti of Bogota, whose 45-year-old autistic son is a resident of the Woodbridge Developmental Center. "He's very attached to the people who work here, and they love him, too. It's not phony."

Mary E. Robinson of Bayville knows improvements must be made at Woodbridge. But she considers the staff there part of her daughter Yvonne's family.

"They take special care of Yvonne," a 43-year-old blind and profoundly retarded woman who has lived at Woodbridge since she was 8. "I would like to give them a chance to improve it."

Byra said the state's new direction gives her some hope that someone in Trenton is listening.

"Up to this point, we haven't had many options," she said.