Anxieties, Arguments About Where Profoundly Disabled Will Live

Andrew Kitchenman | February 13, 2013 | Health Care
Families argue against group homes, while state plans to shutter two large developmental centers

In 1979, the state placed Mark Falca — who is profoundly intellectually disabled — in a community-based group home.

“He had bruises and scratches on him that nobody could explain, recalled his brother Joe.

“The facility was deteriorated and the state just shut it down,” Joe added.

Mark spent the next six years living at the Woodbine Developmental Center — a period that Joe Falca said “restored” his brother. Then, in 1985, the state convinced the Falca family that Mark would benefit from another community placement.

“They suggested that we try it, that it was now new and improved, and that they could deal with his disabilities,” Joe Falca said.

But “the same thing happened . . .” his brother said. “They were trying for force him to do things that were beyond his capabilities.”

As a result, Mark stopped eating.

Now the state is closing the Woodbridge Developmental Center, where Mark has lived for 27 years, and his brother’s concern about what will happen to him echoes the worries of other families at Woodbridge and North Jersey Developmental Center, both of which are slated to close
within five years.

“We’ve been there twice, we’ve done it twice, the state shut the facility twice, we’re not doing it again,” Falco said.

Families and parents of the profoundly disabled have no confidence in the care their loved ones will get in group homes, which they say are more appropriate for those with milder disabilities. They are weighing a lawsuit intended to stop the state shuttering the two developmental centers. And they plan to testify at a hearing tomorrow, airing their anxieties about the staff turnover at group homes; the prospect of change for their children; harder-to-reach medical services — and the fact that the remaining developmental centers will only be located in South Jersey.

Advocates for community placements are equally adamant.

They argue that group homes offer a better environment for the disabled, who should be given the right to live in the community like everyone else.

Many of them even go so far as to say it is a “moral” issue.

The Crux of the Argument

The families say that direct state involvement in developmental centers — large residential institutions that specialize caring for the profoundly disabled — deliver a higher level of care than can be guaranteed at privately run community group homes.

They also say that the higher-paid staff at developmental centers are better prepared to meet the needs of their loved ones, compared with the revolving workforce in community homes.

What’s more, they worry that the emphasis on community placement could be playing a role in the state’s guardianship decisions, including placing residents in group homes who would be better served in centers. And they are feeling pressure to make a decision on moving the residents far earlier than the five-year deadline announced by a state task force.

State officials respond that a system is in place to provide safe and appropriate community placements and that the overwhelming majority of the private community workforce is as skilled and dedicated as employees at state facilities.

They also affirm that the state is carefully fulfilling its duties as the guardian for some residents and that many safeguards are in place to ensure that the transition from developmental center to group home goes smoothly.

In addition, advocates for community placement said that the United States is moving away from an outdated institutional model, opting instead to integrate people with disabilities into their communities as much as possible. They emphasized the benefits of community placement, noting a growing consensus on breaking down barriers between the community and people with disabilities.

According to state officials, the licensing requirements for group homes ensures a safe environment. The state Division of Developmental Disabilities has a case manager for each resident, as well as regional staff members who work to make certain that appropriate services are provided, division spokeswoman Pam Ronan said.

A Tradition of Reform

Many reforms have taken place since the 1970s and 1980s, according to Alison M. Lozano, executive director for the state and federally funded New Jersey Council on Developmental Disabilities and a leading advocate for community placement.

“We support these efforts” to continually improve group homes, she said.

“However, these risks must be addressed, and not be a barrier to community living,” Lozano added, noting that her organization can point to advocates for community placement who had terrible experiences in institutions.

“Two bad experiences are not an indicator that all community settings are going to be bad,” she said.

Joanne St. Amand, whose sister Rosemary lives at Woodbridge, said
the decision to close the centers has wrongly pitted the interests of residents with moderate disabilities against those who have profound disabilities.

“It’s a planned demise by government lawyers and by misguided advocates,” St. Amand said. “It’s immoral on every level. Whoever you talk to who is not making a career out of this, who is not making money out of this, just looks at you like, what are they crazy?”

State officials differ.

“The Department of Human Services’ Office of Licensing, through its licensing and regulatory process, supports the provision of a safe environment in which consumers receive services appropriately,” department spokeswoman Pam Ronan said.

An Outmoded Model

Lozano said the emphasis on providing care reflects an outdated medical model of disability.

“Over the last several decades, the model of disability guiding the design of services is the social justice model, which views every individual as a full member of the community, capable of participation and integration with appropriate individual services and support,” she said.

She noted that the state has assured families that no developmental center resident will be moved to a group home over the objection of a guardian or the resident. She added that each resident who does move to a community placement will have a transition team that will determine which supports and services the resident requires.

“Individuals are placed in living arrangements that can completely meet their needs, including 24-7 care for those with acute medical conditions or behavioral support needs,” Lozano said. She added that incidents of abuse or neglect have occurred in institutions as well as in community settings.

Lozano also noted that state has several layers of oversight that apply to both public and private providers. She added that she knows this to be true as the parent of an adult with developmental disabilities who lives in a group home.
The families of developmental center residents also are concerned about the differences between employees at centers and group homes. The former typically have a unionized workforce that earns higher pay and tends to have longer tenures.

A Necessary Level of Care

Juana Mitchell, whose son Kerr lives at Woodbridge, said workers at community centers sometimes don’t understand the level of care that is required by residents with profound disabilities until they experience it.

Cindy Bartman, whose brother Clifford lives at Hunterdon Developmental Center, said staff changes could be traumatic for residents. She is the president of Save Residents’ Homes at Developmental Centers, a coalition that is weighing a lawsuit to try to block the closures.

“Nobody is willing to stay for substandard wages or no benefits,” she said. “With our individuals, who cannot talk and tell what’s going on or express their needs, every time there’s a change in personnel, it sets back our individuals even harder.”

Bartman compared the relatively small number of residents who require developmental centers to those who need treatment in hospital intensive care units compared with the general hospital population.

“Just because not as many people need that as a general hospital, does that mean that we must get rid of the ICU?” Bartman said. “Let’s do away with that — well, guess what? It’s going to kill people. Well, if you get rid of the [development centers], it’s going to kill people.”

Gerald Newsome, vice president of the International Federation of Professional and Technical Engineers, a union that represents some support staff at the centers, said the employees become like family members to the residents.

“People in developmental centers are career employees — there’s a vast and fast turnover in these group homes,” said Newsome, whose union is one of three that support the coalition.

Ronan defended the group home workers.

“Community agencies have a long track record of providing quality services,” she said.

“During superstorm Sandy, for example, staff at community agencies remained with the people that they serve, often when many had storm damage in their own homes. People working in the private agencies may not have the same level of pay and benefits and may experience higher turnover at times, but the overwhelming majority of direct-care professionals of the private agencies are as dedicated and as skilled as their counterparts in the developmental centers.”

Lozano said the council is working to improve the community homes’ workforce. It’s funded a training project for direct-support professionals with the Boggs Center at the University of Medicine and Dentistry of New Jersey.

“The success of this program in reducing turnover and professionalizing direct care jobs led to the State expanding the program statewide,” Lozano said, adding that the council supports a living wage and fair compensation for workers.

It also “supports creative ways to redeploy some institutional staff to community settings to continue care and preserve job,.” she said.

An Issue of Influence

Bartman said she is concerned that the state is using its role as some residents’ guardian to unduly decide to place residents in community settings.

“It is my sense that those without a family or quite specifically, private legal guardians, those will be clients who will more than likely be targeted for movement first,” Bartman said.

The early numbers of guardians at Woodbridge who favored community placement bear out a difference between families and other private guardians and the state.

As of March 2012, the state had expressed a preference for community placement for 31 of the 92 Woodbridge residents for whom it serves as a guardian, or 34 percent, compared with 20 of the 241 residents with private guardians, or 8 percent. These numbers were provided by state officials to St. Amand.

Ronan indicated that the number of residents in developmental centers has fallen from 5,055 in 1990 to 2,340 today. There are seven developmental centers, compared with 1,143 group homes, which typically have four residents.

“As the census in developmental centers continues to decrease and the desire for community homes increases, DDD has focused on rebalancing its budget away from institutions and redirecting funding into community based residences and services to meet the needs of the people it is dedicated to serving,” she said.

Lozano noted that many state residents with disabilities and their families prefer community placement.

“In addition, the state’s waiting list of approximately 8,000 people exists because individuals and families want services in community settings,” she said.
“Above all else,” Lozano said, “the NJCDD believes that the effort to move individuals into living arrangements that are inclusive and community-based is not a financial issue but a moral one, and a matter of basic civil rights,
Lozano said.

At Home in the Community

Some parents of former developmental center residents who now live in group homes promote the benefits of living in the community.

Mount Laurel resident Tasha H. Jones, whose 27-year-old daughter Enjoli C. Jones lives in a home in Hillsborough, advised center family members to consider potential benefits.

“Community living, I’d say for anyone, is the right choice,” Tasha Jones said, adding that she would encourage families must stay engaged regardless of where their family member lives. “I believe it’s a partnership.”

. “I found that once you move your family member into the community, there’s something that connects or clicks,” Jones explained. “My daughter started to function better,” she said, adding that the broader community benefits from a greater understanding of disabilities when residents live in the community.

While the state task force that decided in July to close the Woodbridge and North Jersey centers within five years, family members of center residents say they are being pressured to move sooner.

One of these is Deborah Smith, whose 42-year-old daughter Kesha lives at the North Jersey Developmental Center. She said that Kesha has done well there after having a bad experience living at a group home.

“They could not deal with her. They could not properly care for her,” said Smith, who added that the center staff members have “done a fantastic job.”

Smith said she has felt pressured to make a decision by the state, without knowing exactly what her options are.

Ronan said the state has provided contacts for all family members to ask any questions. The state has transitional case managers who know the residents and their needs and are working to assist the residents and families.

State legislators are paying attention the plight of families with residents at centers. Assemblywoman Valerie Vainieri Huttle (D-Bergen) will cochair a joint legislative meeting today on the center closings at 11 a.m. at Montclair State University’s University Hall Conference Center.

Huttle said she understands the families’ concerns about oversight.

“It’s certainly harder to provide that oversight to each group home,” said Huttle, adding that there may also be a generational divide between families of older residents who have lived in institutions for decades and those of younger residents who have grown up in the community.

Sen. Loretta Weinberg (D-Bergen) said she would like to see both options remain available to residents.

“There is a segment of that population that can live very comfortably in a group home. There is a segment of the population that, according to their family members and loved ones, can’t, because they require too much in the way of services that could not possibly be provided in a group home setting,” she said.

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