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The state of New Jersey’s Department of Human Services is being sued by a legal advocacy group, New Jersey Protection and Advocacy Inc., for violating the rights of over 8000 developmental disabled people who have been waiting (over a decade, in some cases) to move into government-supported community housing. The department has a waiting list for housing, but few people ever leave the list except under emergency circumstances, as when a parent becomes ill or dies. From today’s Star-Ledger:
“These individuals have been for years diverted to a so-called ‘wait-list’ for such services, with no guarantee, and little hope, of accessing the services they need,” said R. Scott Thompson of Lowenstein Sandler, which is representing the federally funded legal rights group, New Jersey Protection and Advocacy Inc., for free.
“The failure of the state to provide community services for thousands of individuals has had a devastating effect,” said Emmett Dwyer, NJP&A’s director of litigation. “Thousands of people are stuck at home going nowhere, and many of them have been unnecessarily placed in institutions when their elder parents could no longer care for them.”
The aging parents of R.F., a 17-year-old girl with severe developmental disabilities and chronic medical conditions, share that fear. The Randolph girl has been on the state Division of Developmental Disabilities waiting list since 2002.
“She has lived her entire life in a community and does not wish to be institutionalized,” according to the lawsuit. “R.F. has not received any offers for placement in a residential setting.”
K.P. lives with his parents in Lawrenceville, holds a job, and could live in community housing if he had some supervision. But the 27-year-old man with autism and severe obsessive compulsive disorder has been on the waiting list for nine years, the lawsuit said.
A mother I know whose son is an adult wrote this:
Whether housing models are traditional group homes, supervised apartments, or something yet to be figured out, our adult children need a significant level of care. They need somewhere safe to live, where they are surrounded by peers with whom they can have social interaction, and where they will continue to learn and be encouraged to meet the expectations of staff, rather than languishing with aging and/or infirm parents. There are many parents who are ready, willing and able to work in partnership with government by providing houses or apartments, with the government contracting with appropriate staff providers, so long as their child has a place in the home. Yet, we are not allowed to do so. Instead, we are forced to rely wholly on the state, which has instead been working (slowly) on community placements for the people in developmental centers, who require placement due to the Olmstead decision. The waiting list (which we understand is 8,000+, including the 3,400 “priority” cases) is at what seems to be a permanent standstill. In any event, placement according to a position on a list is a system that cannot provide the appropriate matches (i.e. a proper group doesn’t come to the top of the list at the same time)—especially when location of work places are involved. If there is anything that needs to be rethought from the ground up, and for which we need a huge influx of funding, it is the residential component.
New Jersey has been a great place to live to provide my son with the education he needs—-and it would be more than a shame if, having prepared him so well, there is literally no place for him to live as an adult. If there’s an autism issue that people need to be aware of, the need for housing for developmentally disabled adults is at the top of my list and will be for a long time.
281 days ago
If the state of NJ closed all their developmental centers; it free up monies for independent living facilities for the disabled. According to one expert it costs over a quarter of million dollars to care for one resident in a developmental center, it only costs around $80,000 to care for the same individual in the community. The biggest problem are the unions that represent the institutional caregivers. They are influencing the NJDHS to keep those centers operating and making waiting lists for care in the community difficult to obtain. Check out the Noewait in NJ for more info on how to be an activist for your family member. Link up with them on Facebook. Good luck.
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391 days ago
My nephew is now an Asperger’s adult who needs supervision. Although he has a daily program to attend, he does not have a place to live other than with my sister. They live in North Jersey and unless you can pay privately, there’s just a long list to add your name to. What political avenues are people taking in order to get something to happen?
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640 days ago
[...] and “depressing.” But it very much is, right now. In New Jersey, where we live, the waiting list of developmentally disabled adults wishing to move into government-supported community housing has [...]
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733 days ago
[...] Also: Tara on an idea for housing for disabled adults in New Jersey on Sued: New Jersey’s Department of Human Services. [...]
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733 days ago
Good morning, so glad to meet so many others in the same boat as my husband and myself.With a 20 year old autistic epileptic son with little to no functional speech we too lie awake every night wondering whats there to be done for his future and cant figure out why the state is so lax in dealing with the problem.
It is because of this lethergy we would like to meet up with people on this board who would be possibly interested in learning more about Fort Hancock. Fort Hancock is an old decommissioned military base situated in Sandy Hook NJ and has long been abandoned. Its been sitting there pretty much not doing anything for decades. One click on this link and you will see for yourselves that the opportunities to house and employ hundreds of austistic people of all levels in a safe convenient sheltered environment are totally self evident.
http://www.thefortatsandyhook.net/news.asp?newsID=18
I had the pleasure of seeing Fort Hancock a few years ago,{its open to the public as a curiosity} and I was struck by the thought that it had not been turned into a facility for the handicapped.
Why has anyone never considered making Fort Hancock a self supporting community for the autistic/disabled?? My husband and I wondered why this could be. With NJ having a 20 year waiting list for group homes {and so little support from the DDD….I recently had one case worker tell me…”wow…you ask really hard questions!!” and another one told me that if I want more results I should cry on the phone} it’s amazing to me that no one has thought of Fort Hancock and its 10,000 person facilities. Now, Im not suggesting we put all 10000 autistics in one centralized location {that Would be pretty scary}but this ex military base could easily take care of several hundred people right off the bat.See for yourself…there are dozens and dozens of darling Victorian cottages, all identical… ….all sleeping up to 5 people…. just sitting there empty.They are deteriorating but still in good shape, and in a beutiful private setting just off the coastline.
Why not create a self supporting gated community where retired parents or caregivers could could live with their handicapped relatives or charges?? I believe in addition to the housing I saw dining facilities, kitchens, recreational and manufacturing facilities.. a hospital ..a museum..a bakery…machine shops, retail stores…classrooms…. gardens..a movie theater, a swimming pool..a bowling ally..nature trails…the possibilities to keep the autistic population employed and busy and productive within an appropriately sheltered setting are limitless. How fantastic it would be to utilize this beautiful area for housing our children and giving us all some much deserved relief.
It could save the state millions of dollars and relieve untold hundreds of people from the burden of caring for their children alone. Perhaps, well managed, the place could become profitable should a company care to invest in some sort of light manufacturing. Being in the vicinity of the Jersey shore bustrips to local places for entertainment and shopping would be easily available to the residents as well as possible off site job opportunities to the appropriately functionaing. Please, can anyone advise us on how we could possibly approach the public/press with this idea?? Start a grass roots movement??? get the ear of someone who cares??? Someone with political pull???{Mayor Bloomburg of NYC and his friends just spent 250 million dollars on a global anti smoking campaign….couldnt he be persuaded to do something a little more useful with that cash????} How many of you parents would offer to buy a cottage outright from the government and fix it up on their own with the provision that their child, and an aide, lived in it in perpetuity?? In a community shielded from most of the dangers of the real world, where a few moments walk put you in school, work or a recreational facility??? How many parents, if we all pulled together, could contribute and donate our various resources to create this world for our kids, a world whose infrastructure already exists, but just needs a little TLC???
In addition to housing the autistic population so many employment opportunities abound for perfectly capable productive people who are slightly handicapped and just need a gentler pace of life to help them succeed….{like my cousin, 54 and forced into early retirement by rhematoid arthritus. But if she was four minutes from her job and didnt need a car this ex hospital administrator would be perfect!!!!}
Please consider these thoughts for Fort Hancock. You know the drill…There are over 5000 autistic people in NJ waiting for services that this state has scant means to fulfill, {and lets not get started on the Alzheimer’s community, wait til us Babyboomers start hitting 70}and we feel this idea has so much potential to help it’s most vulnerable citizens …our children…achieve a life of productive dignity.
Anybody with us????
Respectfully Yours,
Tara and James Terminello
Taraterm2aol.com
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839 days ago
Also, what looks like a new(ish) group examining the wait list issue:
The National Organization to End the Waitlist through Advocacy, Information and Transformation
http://www.noewait. net/
The associated yahoogroup
http://groups. yahoo.com/ group/NOEWAIT/
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839 days ago
Something I received from the Disability Policy Collaboration, A Partnership of TheArc & United Cerebral Palsy
A companion bill is expected in the US Senate this summer.
Partial text
(…)
The Frank Melville Supportive Housing Investment Act of 2008 (H.R. 5772) was introduced April 10, 2008 to increase the number of housing units for low income persons with disabilities by:
Reforming of the current Section 811 production program to remove bureaucratic barriers;
Transferring the “Mainstream Voucher” program to the Section 8 program; and
Creating an innovative demonstration project that will build an additional 2,500 units of affordable housing every year. Units built with the demonstration program funding will be integrated into the community – truly fulfilling the promise of the Supreme Court’s Olmstead decision and helping to reduce waiting lists.
(…)
——————-
They are asking people to contact representatives to co-sponsor and to state support for the bill.
They have a powerpoint showing the relative cost of a 1-bedroom apartment to SSI payments.
http://capwiz.com/thearc/utr/1/GCFJILTOZF/JZEZILTRTR/1992069921
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