Traveling by foot, bus, light-rail, train, and taxi, it takes Juana Mitchell four hours round-trip to visit her intellectually disabled son at the Woodbridge Developmental Center, where he has lived for the past 25 years.
But if the state moves ahead with its plans to shutter Woodbridge and North Jersey Developmental Center in Totowa within the next five years, Mitchell doesn't know how or when she'll be able to visit her 41-year-old son Kerr.
If Kerr remains at a center, he will be relocated to central or southern Jersey, too far from her apartment in Bloomfield to make visits anything but a rarity.
There is an alternative available to Mitchell, as there is to all of the families whose loved ones are living at Woodridge or North Jersey. They can move them to small community group homes located in nearby towns and cities.
But that alternative is unacceptable to many families of developmentally disabled individuals, who argue that community homes are not equipped to care for the profoundly disabled -- a charge that advocates of community homes are quick to rebut.
"It is well documented that, for every person with a developmental disability living in an institutional setting today, regardless of their need for medical services and assistance with daily living, there is a 'community twin'-- another person receiving the same level of services living successfully in the community," according to an email from Alison M. Lozano, executive director of the New Jersey Council on Developmental Disabilities.
The council advocates that all residents with disabilities live in local communities.
It's not simply a matter of distance and services, however.
For many residents, Woodbridge is home -- the only one that they have ever known. Their families don't want them shipped to another center or moved to a community living facility.
That helps explain why Mitchell has joined with other parents and family members in demanding that the state take another look at its decision to close the two residential centers.
They also question whether the state made thebased on what was best for the residents or for economic and other reasons.
Cindy Bartman, whose brother lives at the Hunterdon Developmental Center, argued that the task force that recommended the closures was involved in a “purely political process.”
Bartman, who heads up the coalition Save Residents’ Homes at Developmental Centers, said that a task force meeting she attended began with a statement that the group was focused on the best interests of the residents, but that the ensuing discussion focused on the economic impact of the proposed closure of the Vineland Developmental Center.
“It immediately went to everything else but the welfare of the residents,” Bartman said.
Her group is weighing a lawsuit to try to stop the centers from being shuttered.
For their part, state officials maintain that the decision to close the two centers was appropriate and stems from a long-standing national movement to place residents in the community, most evident in a 1999 U.S. Supreme Court decision that emphasized the benefits of having residents live in the least-restrictive appropriate setting.
State officials also say that there are safeguards in place to ensure that residents will receive the appropriate level of care and that the state is working with center residents and their families to determine whether another center or a community home is more appropriate.
It's also worth noting that admission to a community home isn't automatic. A resident's doctor must decide as to which placement is appropriate, and community-home providers are allowed to determine which patients they accept. (There are profoundly disabled people in the group homes.)
The concerns of the families of Woodbridge and North Jersey have come to the attention of state lawmakers. The Senate Health, Human Services and Senior Citizens Committee and the Assembly Human Services Committee will hold a joint meeting on the subject tomorrow at 11 a.m. at Montclair State University’s University Hall Conference Center.
In addition, Assemblywoman Valerie Vainieri Huttle (D-Bergen) and Sen. Loretta Weinberg (D-Bergen) are sponsors of a bill) that would study the effects of the 1998 closure of Princeton Developmental Center.
Weinberg said that while the state studied how residents were doing shortly after the closure, it hasn’t done a long-range study.
“People were taken out. We never got a long-range study. What happens to people?” Weinberg asked.
The differences between the families of the developmental center residents and the advocates for community placement are rooted in the history of the centers.
Large state institutions were established in the 19th century as a means of improving care for those with intellectual disabilities. However, over time, these institutions were seen as segregating residents from the community and providing subpar care. Starting in the 1970s, a deinstitutionalization movement began to emphasize integrating people with intellectual disabilities into their communities.
In the 1999 Olmstead decision, the U.S. Supreme Court ratified this approach. Justice Ruth Bader Ginsburg wrote: “States are required to place persons with mental disabilities in community settings rather than in institutions when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated.”
This prompted the state to issue a 2007 report calling for the developmental centers’ population to be reduced from 2,987 in July 2007 to roughly 1,500 in 2015.
But in the decades since public institutions reached their low point, the centers have constantly improved and now offer benefits that can’t be equaled in community homes, according to residents’ families.
“These are not the centers of the past," said Joanne St. Amand whose 57-year-old sister Rosemary has lived at Woodbridge for decades.
The Cranford resident continues, "It’s doing everyone and all the staff a disservice to even try and compare what we have now to what we had 20 years ago, even 10 years ago. It's learning curve.”
St. Amand said the size of the institutions also is an advantage. With more than 100 residents at each center, they can hire professionals who serve on site.
“My sister has to go to the doctor for a checkup, she sees a cardiologist, she has the dental cleaning,” St. Amand said. “She has a nutritionist that watches her diet and a speech therapist.”
St. Amand said she isn’t sure that her sister, who has been tested as having the abilities of a 3-month-old, can recognize her.
“Does she know I’m her sister? I don’t know. Does she know that I love her and that we have a relationship? Absolutely, the same way that she has that relationship with the staff at Woodbridge, they are really her family,” St. Amand said.
“They can read when she has discomfort, they know when she’s sick, they know when she’s dehydrated, to make sure that she gets enough fluids,” she added.
She added that her sister is now facing issues related to aging.
State Division of Developmental Disabilities spokeswoman Pam Ronan said the agency provides services to more than 43,000 residents, only 2,300 of whom live in the developmental centers.
When residents live in the community, staff members are responsible for scheduling necessary appointments, and that person’s case manager ensures that he or she is receiving proper. During licensing surveys, each home’s file is checked to make sure all medical and dental appointments have been completed, she said.
For Lozano center residents have a “a civil right to receive individualized services and supports without having to give up living in a home environment and being a member of our neighborhoods and communities.”
“It is also worth mentioning that previously, when an individual was placed into a developmental center, their placement was often made without consideration for geographical location or convenience for families.”
Council officials cited individual dentists and neurologists who specialize in care for people with disabilities who live in the community. What's more, the organization is working to develop training methods and medical school curriculum for physicians and nurses.
Still, Lozano agreed that more needs to be done to increase the availability of medical practitioners who are well-versed in serving patients with disabilities.
Like other concerned family members, Bartman said the regulations governing the centers and annual audits by the state require a range of services that cannot be replicated in community homes.
For the families of Woodridge residents, the quality of care they would receive at a community home is the crux of the issue.
Most of the center's residents require round-clock-care. Of the 339 who called Woodbridge home in March 2012, 307 were classified as having a profound level of disability, the highest on a four-level scale.
Bartman contended that the centers are particularly appropriate for those with severe and profound disabilities, in contrast with the majority of people with intellectual disabilities, who have more mild or moderate disabilities.
She said that after years of the state scaling back the number of residents in the developmental centers, “what you’re left with are the most profoundly developmentally disabled, vulnerable, fragile people in the state.”
Bartman is also concerned about the effect the closures will have on the state’s other five developmental centers.
“The state is not looking to bolster or support more residents in these centers,” she said. “What they’re trying to do is minimize them, make them smaller and make them go away.”
Bartman worries that some residents will be placed in community homes in order to aid the homes’ finances.
“To build the community infrastructure on the health and welfare and the backs of our loved ones is more than I can stand,” she said.
“Instead of tearing down something that really works, enhance [Woodbridge], make it better,” Bartman said.
Assemblywoman Huttle said she is concerned about how the transition will affect residents of the centers that are slated for closure.
“Change is hard and so when it comes to a vulnerable population like this, it can be physically and mentally upsetting,” she said, adding that she was impressed with the level of service she observed during visits to each of the state’s developmental centers.
“You may not get the expertise of the professionals who are already employed [at the center] in a group home,” Huttle said.
Huttle also said that the state must ensure that any future savings from the closure be invested in community homes and not to plug the state budget. State officials have said that this will be the case.
Juana Mitchell said she couldn’t imagine life without Woodbridge Developmental Center. When Kerr arrived there at age 16, after spending time in rehabilitation after brain surgery following his coma, his prognosis was poor.
“Since being at Woodbridge, actually, he came a long way. First of all they didn’t think he was going to live. He’s been in the hospital I can’t tell you how many times, for seizures, internal bleeding, the constipation thing, lungs punctured, sepsis,” she said.
But while Kerr doesn’t walk or talk, he acknowledges and can make gestures that indicate how he feels, she said. “I watch how he reacts around people,” she said. “He makes his needs known. There’s so much he can do.”
If Kerr is forced to move, Juana Mitchell said: “I think I’d lose my mind.
The thought that Kerr will be transferred to the developmental center in Hunterdon County haunts her.
"If he went to another development center . . . Everything would be strange, the buildings, the environment, the staff. There wouldn’t be one thing familiar.”
“I’m devastated because he’s been there since January of ’88 and so, from being at home, Woodbridge is really all he’s known,” she said.