In Debate Over Institutions, Residents Rarely Heard
In spite of her severe cerebral palsy, Wendy English can make her own legal decisions, vote in local and national elections, and communicate with the help of a specially programmed iPad that utters phrases she has chosen when she taps the screen.
But she can’t control the thing she deems most important to her life: the decision to remain in her longtime home.
English, 51, is one of about 1,000 people with developmental disabilities New Jersey is moving from its institutions in an effort to phase out a treatment model that in recent years has become a prime target of state and national efforts for change. State officials say people like English could have a better life in smaller, privately run homes, which happen to cost less to manage.
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English, however, doesn’t see it that way. She doesn’t want to move from the Woodbridge Developmental Center, one of the two state institutions slated for closure and her home for the past 18 years.
It is a message she delivers with painstaking care. Although English can understand everything that happens to her, she has little control over her body and speaks in guttural utterances that are difficult for even those closest to her to understand. Though haltingly delivered, her words offer a rare personal insight in a debate that has been dominated by state officials, advocacy groups, and caretakers and relatives who say they know what’s best for New Jersey’s 40,000 people with developmental disabilities who depend on the state and federal government for their daily care. The debate seldom includes the voices of people with disabilities themselves. English is not only capable of speaking for herself, but is also in charge of her medical and financial decisions.
However, she has been powerless to sway a move in New Jersey to shift care out of the disability centers, many of which residents like English have relied upon for decades, to group homes. The North Jersey Developmental Center in Totowa closed in June. Woodbridge is scheduled to follow by Jan. 1. English found out last week that she would be moved to another state institution in New Lisbon, her first choice among the options she was provided. But it was a choice she never wanted to make at all.
In spite of its austere decoration and institutional lighting, English said, Woodbridge is the nicest place she has ever lived.
“My family is here,” she said. “In Cottage Eight.”
English had such a tumultuous early life that she is no longer willing to put her fate in the hands of someone she barely knows, she said. She was moved 17 times before she was placed at Woodbridge, when she was 33, a detail so important to her life story that it is one of the phrases programmed into her iPad. The button was one of the first she pushed on a recent visit.
“About me,” it said in a mechanical, feminine voice. “I have had to move 17 different times in the past.”
Her memories of most of those places are grim. Her caregivers often tied her down, she said. She refused to eat. A psychiatric hospital where she spent several years often neglected to bathe her.
“I was always depressed,” she said. “Nobody knew where to put me.”
After finally thinking she had found the place where she would spend the rest of her life, she said, she was dismayed to learn that she would have to move once again. Her anxiety about the transition was only heightened by the two years of uncertainty that followed the 2012 announcement that Woodbridge would close.
“I’m so sorry this closure is happening to her and turning her life upside down after 18 years,” said Joanne St. Amand, the president of the Woodbridge Developmental Center Parents Association. She has become one of English’s closest friends and staunchest advocates. “The anxiety for Wendy of not knowing what was going to happen was unbearable for her.”
The sprawling Woodbridge campus, with its single-story pagoda-like dormitories — referred to as cottages — has aged considerably since it opened in 1965. The grounds are dotted with angular green metal benches. Weeds have claimed a swing set that hasn’t been removed since children were placed there decades ago. The interior walls are made of drably colored cinder blocks and papered with notices reminding staff not to use their cellphones, that the word “retarded” is offensive and that people with disabilities have rights.
But care has been taken to make the space feel more homey. Framed art prints hang on the walls next to original works by residents, 76 percent of whom have lived there for more than 30 years, according to the state. The lobby to English’s building is furnished with overstuffed sofas. State officials would not allow a reporter access to English’s room, citing the privacy of other residents. But English said it is full of her collection of stuffed bears — one of which she always carries with her — photographs of her family and an extensive wardrobe that she selects herself.
She has shared the space with the same woman, one of her best friends, for 13 years. She has a job shredding paper for local businesses in another building on the campus. She is a member of a Special Olympics bowling team and an officer in a statewide advocacy group at whose meetings she sees a man she said really likes her. And she has worked with one social worker for 13 years and credits a staff psychologist with helping her develop all the tools that allow her to communicate.
She supplements her spoken words with props the staff at Woodbridge have compiled for her: letters of the alphabet and emoticons printed on a sheet that is affixed to a tray on her wheelchair; the iPad and notebooks full of personal documents she keeps in a backpack on her wheelchair. She also dictates a diary to her psychologists and shared the last three months of entries for this article.
Most of the Woodbridge residents are thought by their caretakers to have the mental capacity of young children. About 90 percent of the residents have profound intellectual disabilities, according to the state.
But English’s main limitations are physical. She uses a wheelchair and struggles to corral the seemingly independent flailing of her arms. Her facial muscles will not align themselves in the fluid motions required for everyday tasks like chewing solid food. She needs near constant help and supervision.
“I’m like a baby,” she said. “I have to wear a diaper.”
For those reasons, English has steadfastly rejected the state’s determination that she would be happier in a smaller facility. The state — under pressure from a legal settlement it reached with a disability advocacy group five years ago — has pushed for as many developmental center residents as possible to move into group homes, which generally have fewer than six residents and two staff members on hand at any time. Such arrangements are meant to give people with disabilities such as autism, cerebral palsy and Down syndrome who can’t take care of themselves the closest possible approximation to life in their own homes.
But English echoes the concerns of many advocates for disability center residents who have fiercely — and sometimes counterintuitively — fought the trend toward deinstitutionalization. She wonders why, with so many people waiting for spots in group homes, the state has singled out people like her. The state has 8,000 people on waiting lists for community-based services.
“There are so many people wanting a home,” she said. “What’s going to happen to them? Why do they bother us? We are used to being here.”
Advocacy groups argue that, driven by financial and political interests over human concerns, state and national governments are simply moving from one unworkable extreme to another.
While they agree with a 1999 U.S. Supreme Court ruling that said keeping people unnecessarily in large institutions violates their civil rights, they also say the mass transition into community settings has happened too quickly and without regard for the specialized care that many with the most extreme sorts of disabilities need. To buttress their point, such groups cite reported cases of abuse and neglect in group homes across the country.
In New Jersey, advocates against the closing of the developmental centers point to the choking deaths — first reported in The Record — of two men shortly after they were transferred to group homes from the North Jersey Developmental Center in Totowa as the most dire of consequences if people with complicated medical and personal needs are placed in facilities that are not equipped to provide round-the-clock care.
State officials and group home representatives say such accidents are unavoidable in a population of people who often cannot speak or feed themselves. Choking is a leading cause of accidental death among people with developmental disabilities.
English counts herself among the population for whom group homes would not work.
“They’re not going to take care of me,” she said.
She referenced the choking deaths, indicating a medical report that outlines her own difficultly swallowing in a binder of personal documents that she often refers to when trying to describe her situation to strangers. In addition to her physical limitations, she worries about how the small staff in a group home would be able to handle her when she has depressive episodes, when she wants nothing but to lie in bed.
“If I’m in a group home and I get depressed, I don’t know what will happen,” she said. “I will probably die.”
But her topmost concern has to do with her caregivers.
“These people really know me,” she said. “At a group home, every day they are new.”
Group homes are notorious for their difficulty attracting and retaining competent employees. Turnover rates at such facilities nationwide have averaged consistently between 45 percent and 70 percent since the mid-1970s, according to a 2012 report by Sheryl Larson and Amy Hewitt, research associates at the University of Minnesota Institute on Community Integration.
Since English learned of her impending move, her days have settled into a distressing holding pattern, she said.
“When I got the news, I didn’t know what I would do,” English said. “I still don’t know.”
She has watched many of her friends and longtime caretakers disappear as the state has slowly peeled away the center’s residents and employees. The population, once as high as 642, has dwindled from 333 in 2012, when the state announced the closures, to 143. She has worried so much about where she will end up that she has been sent for three overnight stays at psychiatric hospitals. At times, she says, she feels so overwhelmed that all she wants to do is go to bed and die.
All the while, she agonized about whether she should remain her own legal guardian or apply for a state appointee to take over her legal decisions. “Right now, I feel I need an advocate,” she wrote in her diary in May. She also changed her mind several times about where she should go next.
She was told that two of her top choices among the five state institutions that would remain open, and the closest geographically to Woodbridge, were full. Those with the most available beds were hours away from her sister, who lives in Brielle and is her only family member still in New Jersey. She was worried that her next home could also soon be targeted for closure.
After months of indecision, she settled on New Lisbon Developmental Center, in Burlington County, because she has a friend there and some of her caretakers told her the residents include several whose disabilities are similar to hers.
Her wait ended late last week. On Thursday, a day after she spoke with a reporter about her situation, she received a letter from the state. It said she would be placed in New Lisbon on July 30.