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Closure of NJ Institution for Disabled Stokes Mixed Feelings

Closure of NJ Institution for Disabled Stokes Mixed Feelings

The planned 2013 closure of the Vineland Developmental Center — a residential facility for developmentally disabled women in southern New Jersey — is being anticipated with very mixed feelings. Even as disability advocates and families herald the institution’s closure as a sign of progress and a shift to having individuals with developmental disabilities live in community settings, many — including families who had thought their adult children would remains at the Vineland facility for the rest of their lives — would prefer that it remain open. The conflicted responses to Vineland’s closing reflect the ongoing difficulties for meeting the needs of individuals with developmental disabilities, especially in a time of budget cuts.

The 1999 Olmstead decision affirmed the rights of individuals with disabilities to live in community housing; the federal government ruled that it is unconstitutional to segregate individuals with disabilities in institutions. Currently in New Jersey where I live, one-fifth of those with developmental disabilities who receive state funding for housing live in institutions. As an Associated Press story that appears in the Atlanta Journal-Constitution notes, that is “a rate nearly three times the national average and higher than any state except Mississippi.”

Four other New Jersey institutions like the Vineland facility were closed in the 1990s. More than 5,700 people lived at 11 such facilities in 1984; by the end of last year, fewer than 5.700 still were placed at the remaining seven centers. Vineland itself housed over 2000 women in the 1950s, but fewer than 400 now.

Housing someone at a facility like the Vineland one costs an average of $260,000 per year in state and federal funds, including health costs. In contrast, housing someone in a community placement costs an average of $160,000, not counting about $8,400 in Medicaid-provided health care and $3,400 in administrative costs.

One concern about the closing of state facilities and psychiatric hospitals is the loss of state jobs. Someone who has been employed at Vineland as a direct care worker for about 13 years has a salary of $44,000. In contrast, starting salaries for workers in one of the non-profit agencies that staffs group homes in southern New Jersey is $10/hour. With the closure of the Vineland facility, some 1,300 employees could lose their jobs. Families are understandably more than concerned about the care their adult children with disabilities will receive in new environments, and with care workers who do not know them and may not have the same kind of training, support or supervision.

My autistic son Charlie is 14 years old. I think every day about where he will live as an adult and what he will do, especially after my husband and I are no longer here. Charlie has thrived thanks to years of specialized schooling, therapies and expert medical care. He does need 24/7 care, a reality we’ve been very much reminded of as Charlie’s school year ended on Thursday. He starts Extended School Year (summer school) on June 29th; in this block of time, my husband and I are Charlie’s only caregivers. Charlie needs a lot of physical activity to help keep his most difficult behaviors under control so our days are filled with numerous long (over 10 mile) bike rides and long walks, and some long hours at home the rest of the time: Charlie doesn’t read or care to watch movies and finds many public places, from restaurants to stores to public transportation, overwhelming, so his activities are currently somewhat limited.

While we envision Charlie living someday in a group home or other community placement with round-the-clock care workers, there are many concerns. A major one is the staff who will be taking care of him, and who are key to his functioning. 

A recent New York Times article highlighted the crisis in care for the mentally ill. Last year, Stephanie Moulton, a 25-year-old counselor at a group home for the mentally ill in Revere, Massachusetts, was brutally killed by one of the residents, 27-year-old Deshawn James Chappell, who is schizophrenic. Moulton was alone at the group home the day she was killed by Chappell, who had a history of violence and was not taking his medication. Her death on January 20 “stunned the mental health care community in Massachusetts,” and occurred just a few days before Gov. Deval Patrick released a budget that “would slash mental health spending for the third year in a row.”

Mental health issues and developmental disabilities are very different conditions. But the concerns about adequate staffing levels and safety for residents and workers in group homes and other community placements are the same. I don’t want my son to live segregated from the community in an institution but he does need a lot of care and has thrived with well-trained, appropriately compensated staff. We need to recognize that cutting corners in the care of those with some of the greatest needs only sets us up for real and terrible tragedies. It’s appalling that those who take care of those who have so many needs are paid so little; reading about Chappell’s troubled history, it is baffling that a single careworker, was at the group home where he was placed. We need to start planning now to provide the best care for individuals with disabilities to live free and dignified lives in the communities they belong to. But we can’t set them up for failure by not providing the level of care they very much need and deserve.

 

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Photo of a man with developmental disabilities and his family by PBoGS.

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38 comments

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6:41PM PDT on Jun 28, 2011

Noted.

2:01AM PDT on Jun 22, 2011

The more and more cuts the government (republicans) makes...the worse mental and disabled health care is going to get. It is unfortunate, but there are MANY disabled people in this country that will NEVER be able to live in community settings...and it is dangerous to think they CAN! It is also dangerous to cut the costs of operating mental health and disability institutions and community housing centers...how much care can someone GIVE when they are paid $10 per hour, and they can barely afford to pay the bills? Who is caring for the workers? Why should they care for your child or adult, when no one cares about them? Even angels deserve to get paid a living wage!

9:00PM PDT on Jun 21, 2011

John H., I'm actually with you on hating that people give up their special needs kids. I happened to look at the "Waiting Child" (for adoption) list for Virginia a couple of years ago and it really made me sad and mad that there were a number of kids like my daughter on the list. I couldn't dream of it, myself. But in the end, I want there to be a safety net for every kid...

1:51PM PDT on Jun 21, 2011

Rochelle G. my daughter doesnt have physical just mental disabilities and we have no resources here in tenn . there have been people who have walked away from there resposibities of a parent and laid the duties off on the tax payer and that hurts everyone . i truelly wish you the best of luck and god bless you for being a good parent .

12:56PM PDT on Jun 21, 2011

John H., all I can say is either you have more resources available than we do or your child's needs aren't as great, because we're doing everything we can - believe me - we've spent many thousands out of pocket, we've got the most expensive life insurance we can afford - but it's not going to be enough, unless something changes, or, heaven forbid, she dies young. I find it unrealistic to expect that people should be able to provide for their families no matter the eventuality, and a belief that is bound to be a drain on society one way or another. But it sounds as though we will have to agree to disagree on this.

7:40AM PDT on Jun 21, 2011

Thanks.

6:15AM PDT on Jun 21, 2011

Rochelle G. i'am not a rich person but i brought my child into this world and it's my responsibilty to make sure she is taken care of not the tax payer . i wish the best of luck to anyone with a special needs child / adult it can be difficult dealing with this in today's world .

6:11AM PDT on Jun 21, 2011

It really does come down to money, the bottom line is that things that cost are eventually closed. Hospitals are now only there for certain types of care, and your insurance decides. But this has got to change. Community houses, residential care, homes for the elderly and disabled are meant to be homes, not hospitals. Round the clock care is needed for Alzheimer patients, for non-communicative adults, for some mentally ill patients who need to be given medication at specific times. Assisted living or independent living within a structured facility that offers meals and activities for older people needs to be a real possibility, not only for the wealthy. We can do this; the fact is that these are our people, our family, our own parents and sisters and brothers. We must see that excellent care is given to them by qualified and yes, LOVING, nurses and caregivers, alongside of our own regular personal contact with our own patient/resident and with the staff of the facility.

7:43PM PDT on Jun 20, 2011

It all really does come back to money.

7:39PM PDT on Jun 20, 2011

John H., if we all did as you suggest, that would certainly solve the world population problem, because only millionaires would have children! Even at the current local Medicaid rate of $8.86/hr and assuming no inflation (ha), it would be $77,614/yr just for our daughter's care 24/7 once we're gone, not including a place for her to live, tube-feeding formula and supplies, doctor's visits, etc. Oops, should have saved up a couple million dollars before we went and had a kid...

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