Sued: New Jersey’s Department of Human Services
April 17, 2008 by Kristina Chew, PhD
Filed under Adulthood, Disability Rights, Family, Legal Issues, Living Arrangements, New Jersey
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.
Jeff Stimpson
Jill Cornfield
Here’s another post dealing with the subject: http://autisminnb.blogspot.com/2008/04/will-new-brunswick-care-for-autistic.html
For some low-functioning autistics safe institutional care with properly trained staff may be best.
Society needs to provide both community and institutional housing.
It’s the one issue that parents of older autistic children have mentioned the most that I have spoken to. There’s no question that staff have to be highly trained; many parents are interested in their children living in the community (in a group or supporting living setting). Training and supporting and supervising staff is a huge topic and, to do it right, will cost $$$$. Some parents have spoken about wishing for their children to remain in more institutional settings. It’s the simple lack of housing for developmentally disabled adults that has become a huge issue.
Also here in NJ, it’s not possible for a parent to donate their home and have it become a group home —- I met a family from Texas who was planning to do just this, to provide a (very familiar) place for their autistic son to live.
I was thinking of donating my home so that my children will have a place to live in a familiar setting. There have been some articles on this setup in our paper. It’s a wonderful idea. However, I am having problems finding providers for my kids now, I do worry about the quality of providers for my children when they become adults. That is what I worry about the most.
Why does New Jersey have a problem with donating homes to make them group homes?
Definitely something I worry about as well. When will these types of stories get the same airtime as those shouting about vaccines? I realize they don’t know any adult autistics, and perhaps they refuse to believe they even exist…but the need for adult services is very real. So frightening to me. Interested to see how this case continues.
Hey–you, Joy of Autism, & I were mentioned here, in case you missed it:
http://latimesblogs.latimes.com/booster_shots/2008/04/measles-or-auti.html
Nice to see our voices are being heard.
Wow. I am shocked. I was always amazed with how great everything was in Jersey for M. The schools, the support and considering some of the corrupt things we witnessed it amazed me that the system did not seem to be corrupt. I certainly hope this is an isolated thing. Terrible for all of those people in need.
@Marla, As I’ve been learning (fast), NJ has not been so good for adults. There are good programs that have trained autistic adults to work etc. but there definitely is a housing shortage. The wishful thinking part of me hopes that it will be better by the time Charlie is older—–but I have to do my part.
@S.L., Saw that in the LA Times—very glad to be mentioned in such great company!
The last figure I read estimated the cost for community housing at $125,000 per year. This included monitoring, case workers, etc. For 8,000 people you then need $1 billion for the service.
That might sound extreme, but hidden costs add up quickly. Even half the cost per adult would ruin some state budgets. Here in MN, some schools now spend 40% of classroom funds on special education. Specialists are expensive–and surely we want specialists for adults, too.
I have no idea how to meet these needs. My univ is cutting disability services due to rising costs. Wish I had any good ideas.
I’ve heard the same figures quoted, about the cost for community housing and for the amount of funds spent on special ed. Yes, we do want and need specialists for adults too. I know of one organization in NJ that runs group homes for about 80 adults; they have to fundraise every year as they always are short funds.
Hello from Virginia,
No housing here for adults with autism who have an IQ of 72 or more, huge waiting lists for others. My teenage son does receive services for personal care attendants through a Medicaid waiver. If we stay in state, I hope to downsize to a small home or condo and deed it to him so that he has a place to live (and continue to receive waiver services) after we pass away. Some families are creatively getting together to buy homes for their adult children with disabilities, where they receive attendant care and other services via the Medicaid waivers. I recently came across this somewhat dated but informative website on alternative living arrangements: http://www.geocities.com/heartland/woods/2869/alternatives.html
I’m afraid to move to another state only to have things be worse–e.g., having to get on a waiting list again for waiver services. It is so crazy that the types of services available vary by state.
M
I agree, the housing issue is at the top of the list for my household too. I wonder why families cannot donate their homes. I am a renter so nothing like that happening here.
I would like to have a house and share with other single families and be able to take turns looking out for kids and also do events together and create our own type of family structure. Something similar to co-abode for single Moms, but make it for families with autism.
Maybe someday someone will give me the house or money to get this accomplished.
I tried to explain about the waiting list to a friend (who doesn’t have a child on the spectrum) and it just seemed impossible for her to fathom.
Housing, employment (meaningful employment), and transportation between the two: Top priorities.
I too have had the idea of possibly purchasing a condo together with one or two other families to solve this problem. I’m not sure what the problem is here, but it seems that many parents are more than willing to step up to the plate to do what needs to be done with our special needs children. Another option that I think that can be adapted to meet the needs of a variety of functioning levels for adults with autism is located in New Haven, CT. This residential setting could provide services in a flexible setting and be located in medium sized cities/towns that would be near possible places for employment, shopping, and physicians all within walking distance. New Jersey has a lot to learn from a group of parents that have already done what they needed to do. I’m pretty sure there’s no need to reinvent the wheel.
http://www.parentsfoundation.com
Thanks very much—–COSAC has begun to address this issue and is working hard to get the state to recognize the need. Thanks so much for the link and suggestions!
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
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/
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