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Autism Vox

Sued: New Jersey’s Department of Human Services

by Kristina Chew, PhD on April 17th, 2008

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.

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POSTED IN: Adulthood, Disability Rights, Family, Legal Issues, Living Arrangements, New Jersey

22 opinions for Sued: New Jersey’s Department of Human Services

  • mayfly
    Apr 17, 2008 at 8:48 pm

    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.

  • Kristina Chew, PhD
    Apr 17, 2008 at 8:55 pm

    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.

  • Jill
    Apr 17, 2008 at 10:09 pm

    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?

  • S.L.
    Apr 17, 2008 at 10:21 pm

    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.

  • Marla
    Apr 17, 2008 at 10:29 pm

    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.

  • Kristina Chew, PhD
    Apr 17, 2008 at 10:34 pm

    @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!

  • C. S. Wyatt
    Apr 18, 2008 at 12:36 am

    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.

  • Kristina Chew, PhD
    Apr 18, 2008 at 11:40 am

    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.

  • MJ
    Apr 18, 2008 at 9:28 pm

    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

  • Bonnie Sayers
    Apr 23, 2008 at 8:37 pm

    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.

  • Kristina Chew, PhD
    Apr 23, 2008 at 9:53 pm

    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.

  • TooManyHats
    Apr 24, 2008 at 12:22 am

    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

  • Kristina Chew, PhD
    Apr 24, 2008 at 9:21 am

    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!

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  • Regan
    May 16, 2008 at 2:51 pm

    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

  • Regan
    May 16, 2008 at 2:52 pm

    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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