N.J. developmental centers brace for huge change

TRENTON - With its imposing, Victorian-era buildings and leafy, college-like campus, the Vineland Developmental Center was in its time a state-of-the-art institution for treating young women with complex mental and emotional disorders.

At its peak in the late 1950s, just over 2,000 women lived at the center. Once there, often at the behest of families that no longer could care for them, they could expect to stay for life.

No longer.

Vineland and six other state institutions that care for about 2,252 people suffering from a spectrum of disorders commonly known as mental retardation are in the midst of massive change.

Amid protests by the families of some residents, two of the institutions, the North Jersey Developmental Center in Totowa and the Woodbridge Developmental Center in Middlesex County, are scheduled to close within two years.

If the trend in other states is any guide, others likely will follow.

Under a lawsuit settlement signed Feb. 26 by state Human Services Commissioner Jennifer Velez, the state has committed itself to moving about 600 residents into community-based group homes by 2017.

Vineland, which will remain open, likely will have a slight uptick in numbers as the other institutions close, but over time, its numbers, too, will drop.

The state also has agreed to speed placement of those not in institutions who are on waiting lists to live in state-funded group homes. It is the most far-reaching set of changes to the state's hospitals and community-based homes for the developmentally disabled in a generation or more.

"Closing a developmental center is a very emotional issue, and it takes a lot of political will and financial commitment," said Dawn Apgar, deputy state human services commissioner. "We have had a lot of parents and family members who really wanted to keep them open."

Among them are Mary and Vito Colletti, whose autistic daughter, Karen, has lived at Vineland for 31 years. The Collettis, of Woodbridge Township in North Jersey, say their daughter is accustomed to the staff at Vineland and needs more care than she could get in a group home.

"She does not belong in a group home," Vito Colletti said.

When Vineland was founded in 1888 as the Vineland State School for Feeble Minded Women, New Jersey was thought to be on the cutting edge of treatment and care for those with developmental disabilities.

The term covers a range of disorders, including severe autism, spina bifida, retardation, cerebral palsy, and psychiatric ailments.

Though New Jersey was an early leader, other states surpassed it by focusing more on community-based treatment. As of last year, when a state task force recommended closing the centers in Totowa and Woodbridge, New Jersey was ranked 49th in the nation for its performance in caring for the developmentally disabled in community settings.

Only Mississippi was worse.

To spur change, advocates for the disabled in 2005 filed a lawsuit alleging the state had violated the constitutional rights of the developmentally disabled by failing to provide adequate living and treatment options outside institutions.

The impetus for the changes began with the 1999 U.S. Supreme Court decision in Olmstead v. Georgia, in which the court said state governments had to provide community treatment and housing for the developmentally disabled.

Since then, a consensus has emerged among treatment professionals that no disability is so severe it should prevent placing anyone in the community.

As a consequence, 13 states have eliminated their institutions and now place the developmentally disabled in group homes or other community-based housing.

In New Jersey, even as the state has been gearing up to move residents into community group homes, care for those who remain in institutions has been improving.

Whereas 20 to 30 years ago, patients were at best warehoused and at worst subject to physical abuse by undertrained and overwhelmed staff, residents of the state's developmental centers now benefit from cutting-edge treatment and, in some instances, one-to-one staffing ratios.

Recently at Vineland, several of the most severely disabled residents participated in a sensory-stimulation program, Snoezelen therapy.

The treatment, which employs lights and sounds in a darkened room to engage those with severe autism and other disorders, began in the Netherlands.

Proponents say it improves patients' moods and reduces stress and self-injury.

At Vineland, as a physical therapist managed the process, each resident was attended to by a staffer who adjusted lighting or sounds, sometimes stroking the residents' hands or arms to create contact and stimulate a reaction.

That Vineland will remain open is a bit of a turnabout. In 2011, the state, feeling the pressure of civil rights litigation, slated it for closure.

That caused an uproar, and the Legislature established the Task Force on the Closure of Developmental Centers to decide which of the state's seven institutions should be shuttered.

It concluded last year that Vineland and four others should remain open. There were too few group homes for residents who would leave Vineland if it closed, the commission found.

It also noted one non-therapeutic reason for keeping Vineland open: It is a large employer in an economically struggling region. Direct-care workers at the developmental centers are relatively well-paid - average annual compensation is $37,723, and they typically have opposed closing the institutions.

Some parents and relatives have resisted closure, too, fearing their children would be placed in institutions far from home where they would be lonely and away from accustomed caregivers.

Yet the logic of downsizing is in some ways irresistible. The state spends about $300,000 a year to care for each resident of a center.

The average in the community, where residents typically are cared for in homes run by nonprofit organizations or private companies with nonunion workers, is just over $200,000 a year. And as a visit to a group home near Vineland amply showed recently, some residents at least like being in smaller homes away from the large, hospital-like institutions.

The large, ranch-style house was set back from the road on a wooded lot, and each resident had his own room. A a spirit of camaraderie prevailed. For Michael Haines, 30, who went to the home from the Woodbine Developmental Center, that is a big improvement.

"It's better than being at Woodbine," he said. "It's not an institution where you have to deal with [hundreds of people]. Here you have to deal with only three."