Print Print

In Debate Over Institutions, Residents Rarely Heard

By

Text Size  A  A

Wendy English, a longtime resident of the Woodbridge Developmental Center in New Jersey, uses a chart and iPad to communicate. She expected to live at the center for the rest of her life, but with the facility set to close, English must move. (Thomas E. Franklin/The Record/MCT)

Wendy English, a longtime resident of the Woodbridge Developmental Center in New Jersey, uses a chart and iPad to communicate. She expected to live at the center for the rest of her life, but with the facility set to close, English must move. (Thomas E. Franklin/The Record/MCT)

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.

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.

More in Living »

Search Jobs

Post a Comment

Disability Scoop welcomes comments, but all submissions are moderated and will not appear until they are approved. Please keep your remarks brief and refrain from inserting links. In order to maintain a respectful dialogue, comments that are promotional, off-topic, unoriginal or those that contain offensive language or make personal attacks will not be published.

Comments (25 Responses)

  1. Dadvocate says:

    One size does not fit all. Individual choice, not government mandate, should guide choice of setting. Some people prefer congregate care or intentional communities and group solutions for valid reasons. Their choices should be respected…and funded!

    Wake up CMS and State DDD professionals. The fantasy of unfettered independent or group home living for ALL being pedaled by some long time (many publicly funded), rigid disability advocates is not only a corruption of Olmstead, it’s an irresponsible, downright dangerous, and sometimes deadly approach. Abuse and death post deinstitutionalization is recent front page news in Atlanta, GA, the UK, and many other places. Accepting this severe collateral damage (or dismissing it asan Anatoly) in pursuit of an ideological nirvana (or a low cost infrastructure) is repugnant.

    I wonder just how entwined some ADA funded advocates and their DOJ friends have become with States desperate to shed costs…

  2. Dadvocate says:

    “as an anomaly”

  3. Rebecca says:

    It is absolutely all about the residents and as article aptly points out they are rarely heard. Many facility residents are so cognitively disabled they are non-verbal. Legally appointed guardians’ opinions are dismissed by “advocates” who have placed themselves and their organizations in positions to allegedly be the voice of the voiceless — even though they have no personal connection to or knowledge of the people they claim to be advocating for.

  4. Joan says:

    Very telling article. Higher functioning individuals deserve and do well in community, yet sadly, community-for-all advocates often ignore tragedies occurring to our weakest due to systemic, community deficiencies, including high direct support staff turnover. Thank you for an article that tells a more accurate story. Our most vulnerable deserve their voice to be heard, and true choice, safety involving their care – as well as where they would like to live.

  5. David Hart says:

    The hard fact that most cannot swallow is that caring for Ms. English at the ICF is less expensive than if she was in the “community” in a group home or living by herself and receive all of the services offered by Woodbridge Developmental Center. If put in the community she will not receive the same services she is entitled to that she receives now.
    But this is not a money argument it is an argument of “one size does not fit all” and Ms. English should be allowed to make her own decisions not some miss guided ideolog.

  6. Jane Darlene Strifler says:

    As the disabled person myself even though I have never lived in the institution or other living a situation I think one of the things they could do in order to have accessible housing for disabled people is to refurbish these buildings unless they can be proven to be unsafe to do so; make them available as individual apartments but so disabled individuals can still live together and have 24 seven care yes this can be done it must be done.

  7. JR says:

    Government-funded advocacy groups that pursue the closure of programs and facilities over the objections of the people who participate in them, need to be held accountable. The first step would be not allowing funds to be used for these purposes. Surely these groups can find better things to do with their time and energy.

  8. anonymous says:

    I think that my son who has severe (mostly non-verbal) autism would be better off in the future in a ICF with educated, trained staff who actually care than in a group home where the staff is just there until a less demanding, higher paying job comes along — in a group home he will be at high risk for abuse, neglect, and escaping out of the house, that could result in running into traffic, drowning, or worse abuse from those on the street — a parent of a child with severe autism or cognitive disability ‘s worst nightmare. Most of the staff at group homes are not going to look after the disabled’s physical or mental health the way a facility specialized in their care can. It will cost the states more in the long run when the disabled develop worse physical and mental problems due to abuse and neglect.

  9. Mary Vigil says:

    Ms English,
    I am so sorry that our government in a blind race to save money, look to Olmstead as their savior. They ignore the part that the person receiving services should have a choice of where they live and receive services. I am a legal guardian to a wonderful gentleman in Colorado and we are fighting the same battle. He is not able to voice his wants or wishes and depends on me. But hearing your story that a person who can voice her wishes, votes, can make her own financial decissions, can be forced from her home. What is wrong with our government. They need to slow down and make sure that the community has the ability to provide the services of medical, mental health, physical care and therapies, day programing, (jobs) and what ever else is needed. They need to have the staff to monitor the community placements and have placements that provide 24/7 awake staff. Then have a safty net when these placements fail. I pray that your new home will not close, and that someone will listen to your story and know that there are so many more people facing the same uncertinty that you are. Many who do not have anyone to speak for them, because they can not speak for themselves.

  10. Lucille Bar-David says:

    My heart goes out to Wendy English, who has expressed her needs so clearly, and it is as if she has no voice at all. I am glad that your time at WDC has been so positive. My son was abused there, though there were many caring staff who were very loving and protective of him. He is now living in the community and thriving, a lucky one. I remember a few years ago, I visited my son on the day of the funeral of Douglass Curtiss, a much loved resident of cottage 15, who was deeply mourned by staff who were very upset that the state let this happen. Douglass had been placed in a group home where he deteriorated rapidly. Apparently an evaluation was done of the placement warning of the danger faced by Douglass. The urgent warning was ignored and Douglass died shortly after. Though the evaluation was ignored anyway, it is only more disturbing that there is no follow up from WDC with the group home placements at this time, even though Douglass was not the last one to die in a group home, shortly after leaving WDC. When I spoke up to parent advocacy, human services police, the ceo… the response was no help, but an investigation into how I knew what was going on there.The state, the nation should not be allowed to abandon the most vulnerable residents to unsafe group homes. Transparency, training and monitoring are desperately needed. Years ago the state had begun to pressure or induce agencies to accept residents that the agencies were clearly unprepared to provide safety for, let alone adequate care. WDC itself maintained many staff members, who had been seen abusing residents by supervisors or peers. Yet now they seem to have no problem firing people for much smaller reasons. Residents have different needs and those needs must be accommodated. After 30 years of life in the institution, many of these residents lack the support and protection of friends and family members outside WDC to speak up for them. After the death of Douglass, I made small donations to many charities in his name, writing “Remember Douglass.” I think it could be important if many people raised the call of “Remember Douglass” and all the voiceless ones in need of our support and protection. Why not pull some people back into service to support and protect here.

  11. Dennis Burgess says:

    I am not sure how I feel about this situation. On the one hand, I don’t think that disability rights advocates should be blamed for wanting to close down every institution in this country. While on the other hand, if someone needs around the clock care then they should be able to receive it in a group home.
    I don’t understand why there should be a question about this. I mean if states force persons with disabilities to move out of institutions and into group homes then they also have an obligation to ensure that the quality of care remains the same or even improves with the move.

  12. VMGillen says:

    Many of these institutions are located on prime real estate. Combine that with the (appropriate, IMO) trend to de-institutionalize, and residents become collateral damage. States are incurring operating expenses, insurance, etc. for the entire facility – perhaps, in a case like this, as many “cottages” as necessary could be kept open as long as necessary, while the state divests of the rest of the property. Certainly, individual choice MUST be considered – how can anyone tell anyone else with 100% assurance what will make that person happier?

  13. VMGillen says:

    Read history before you decide on placement in a large institution. Randalls Island, in NYC, was closed, and everyone was moved to Willowbrook. Willowbrook was closed for the same realities that led to the closing of Randalls Island. Read Goffman – a closed institution can create their own reality – and usually, it’s not nice. You’re right about problems in ICFs and similar community-based residences – but at least there are “outsiders” -proximal supports, as it were, whereas who’s watching an institution? Quality Assurance units? Look how well that’s worked in the past.

  14. Dadvocate says:

    VMGillen – Know the history well and agree that the model of massive SOIs (many in the middle of nowhere) is a relic of bad policy and programming…for the most part. There are some large (multi hundred bed) private congregate models that enjoy and deserve, to the dismay of activists, great reputations. They are highly popular choices (big waitlists) and serve their clients very well (ex. Misericordia in Chicago)

    I am also unconvinced, even acknowledging the very real evidence of unconscionable criminal abuse in some large institutions that, in the aggregate, they were or are more dangerous for individuals with severe disabilities than group homes or other “community settings”, including some family homes. To paraphrase the late Bernie Rimland, “Not every institution is a Willowbrook and not every group home is nirvana.” The Atlanta Journal Constitution’s reports of unexpected death (10%!) and criminal abuse related to The State of Georgia’s recent deinstitutionalization exercise should give more than a little pause to the reasonable observer. There is horrible, bad stuff happening in every setting. Less (and offsite) oversight of minimally trained, high turnover staff and fewer “eyeballs” observing what’s going on in these “community based” (but often stand-alone isolated) settings is really troubling.

    But the crux of the matter is really who has the choice of setting. This is a function who “owns” the menu of available options. The menu is constructed using definitions of what constitutes an “institution” or what it means be in a “community setting”. As it now stands, these definitions have been pushed by deinstitutionalization advocates to a point beyond the absurd, severely limiting individual and family choice. Conflating every planned community or campus model, modest footprint intentional community, agricultural community, a handful of apartments in the same building or complex, or even 2 group homes on the same street with a multi hundred bed Victorian era “institution”, eliminates essential options and choices that people need and want.

    This is really bad policy. “Community setting” should be defined (and has throughout human history) by the members of those communities, not by bureaucrats in DC or self appointed “experts”. Communities can and do come in all shapes and sizes.

  15. Carol McMorris says:

    In reading the article, I do not see that she was given any community placement options or that she had problems in non-institutional care, so I’m not sure where the comments below about the failure of Olmstead comes into play. It would seem that all options were institutional and that all her experiences have been institutional. Honoring her wishes is important, but providing real choices is even more important.

  16. Tiffany says:

    While I do feel for anyone who feels powerless on such a important issue in their lives, I feel that this lady has been mislead by staff who are likely more concerned with losing their jobs and benefits than about helping someone with a transition. Yes, change is scary and yes it is sad she had had to experience it so much in her life, but staff should be encouraging her to see this as an opportunity. Also a group home can still offer 24 hr care and onsite nursing, and in fact, would be legally obligated to meet the needs of any client they were to contract with to provide service. I have worked for many years in residential care and have assisted many people with this type of transition and am sad to see that she has been led down a road of fear instead of helped and encouraged to seek greater independence and community inclusion. The world may be scary but it can also be exciting and beautiful.

  17. Concerned RN says:

    This just makes me sad. Everyone should have a choice about where they want to live. This is very, very sad. I hope she can adjust and not be too depressed when she moves. I think we all need to pray for those who are at the mercy of politicians and people who think “they know what’s best.”

  18. DC Matthews says:

    It’s just lovely that many of our advocates don’t even ask us what we need and want anymore, isn’t it? Their ESP seems to be showing more and more signs of wear. Many of the long term homeless are single disabled adults and the we represent them lobbyists are not without fault. Fewer long term places for us w disabilities to go is not a good plan, especially in a still very weak economy.

  19. Harriet says:

    In Australia, we have the same debate. I have come to know a group of people who lived long term in a wonderful (but shabby) “institution”. Political correctness (and the fact that it became prime development land) has led to their diaspora. Now we hear stories of bewildered people who can’t find their friends while the approved line is that their needs are being met and their human rights upheld.

  20. Katina says:

    One of the main reasons that individuals do not receive appropriate care in group homes is because of the quality of staff. Employees are underpaid and do not receive medical benefits, so group homes do not attract long-term, skilled employees. Turn-over is high and many inappropriate interactions occur. Rules governing group homes are not adhered to despite oversight by county/state agencies. Abuse occurs frequently by both staff and other residents, meds are stolen, safety regulations are ignored, hygiene is not monitored and many other important needs are overlooked. In rural areas, there are a limited number of people to employ and they leave quickly. Some individuals with disabilities have extremely high needs, (physically aggressive, need 1:1 supervision at all times, sexually abusive) that they, nor anyone else, is safe in group home. They actually need an institutional setting. I know these things because I work for Developmental Disabilities and staff that supervise group homes. I see the number of “Incident Reports” that are filed, each with serious problems that occur to staff and to residents. I understand why Wendy wants to stay where she knows she is safe and well-cared for. The alternative is scary. Even if you find a reputable group home–there is nothing that says that it will stay in business or that management won’t change. You are at the mercy of fate..with a very bad track record. There must be a better way to provide respectful, caring, safe services. The system we have, be it institutional or group homes is sadly lacking at the cost individuals who mostly do not have the power or abilities to self-advocate. Even when they do have the ability, they are not able to make choices that represent self-determination. That is a catch word that largely means nothing when it really counts.

  21. Tom says:

    Despite 40+ years of efforts to promote community inclusion, it has not occurred. People with developmental disabilities are still not accepted in the community, and people with significant disabilities are especially shut out. Ms. English simply wants to live among peers who accept her and in an environment where she feels safe and comfortable. There is no definitive evidence that “community lving” is superior to congregate living. Study results show that quality is related to the quality of the staff and level of functioning of the individual.

  22. jackie says:

    I have seen good/not so good “institutional care” & good/not so good “group home care”. it is not the type of setting folks live in, it is solely the people employed there to care for them- turnover of staff is more prevalent when they don’t get paid well/minimal benefits. Translated, this requires MONEY for more consistency of care, something no one wants to ante up for – trying to blame the institutional setting for poor care is not accurate- indeed, when someone lives somewhere for many years, with the same caretakers, it is “home” to them. it may not be our choice of where we would want to live, but the disabled are shuffled around whenever it suites administrators/politicians, because they don’t/can’t fight back. Having a physician/nurse/PT or other professionals at the ready in an institutional setting is a 100% positive- who of us prefers to schelp to the doctor’s office, with the long waiting times, and contagious illnesses floating around the room, all the while filling out lengthy forms & answering personal questions at the receptionist window- most institutions provide house call type of services when available- and waiting is not a strength when it comes to a lot of DD individuals. I have seen the trends over the years, & my only hope is that we will eventually come full circle & realize that “different strokes for different folks” is not only a saying- it should be the way things are done with these individuals- listen to their wishes, and help get them what they want- they don’t ask for much, except for
    a say in their own destiny-

  23. Sonny says:

    This message needs to be shouted from the rooftops to the public. Many of the groups who are active in pushing the “community for all” agenda are doing so because they have vested interests in seeing this come to pass, even presenting inaccurate or incomplete information to bolster their case. Couple this with state govenments that hear this testimony and have perceptions of monetary savings, and the disability community – who often can’t speak for themselves – doesn’t stand a chance. Until there is sufficient funding to support the lower functioning and medically fragile individuals in a community setting, this social experiment is doomed to see more failures. Those elected officials who are decision makers need to see the whole picture before caving in to the current politically correct thinking that says community group homes are best for all.

  24. Claire says:

    Dear Wendy..my daughter Heather was abused in the most beautiful group home in NJ ..I managed to get her out and home with me 4/09/2012….The record might…might be doing a story…Dont know if theyre interested in OLD ABUSE???Keep fighting….I pray every night hoping Heather never needs to go to a group home in this state

  25. Claire says:

    Wendy…Get an ATTY..REFUSE TO MOVE….make the newspapers take notice??

Copyright © 2008-2014 Disability Scoop, LLC. All Rights Reserved. | Privacy Policy | Terms and Conditions | Reprints and Permissions