When a Real Crisis Hits
Published January 04, 2009 @ 03:33AM PT
Crisis. The word traces its root to the ancient Greek word krinein, which means "to judge, separate, decide." A crisis is when you've got to make a decision, a choice and, too often, make it fast.
Sifting through the mail after our trip, I found the winter issue of People & Families, which is published by the New Jersey Council on Developmental Disabilities, and immediately turned to the lead article, on "what the world fiscal crisis could mean for government-funded services for people with developmental disabilities." While spending for programs for community services has increased, it was noted, it had "never kept up with the growing need." Cited was a Wall Street Journal article, When Crisis Hits the Disabled: Limited Options for Support and Housing Exist for Aging Caregivers and Their Children from April of last year.
The WSJ article noted that:
About 80,000 people with developmental disabilities nationwide are on waiting lists for various services to help them live in the community. Texas, alone, has about 35,000 people waiting for home and community services, in spite of funding last year to serve additional people.
Spending for such programs continues to increase annually, although levels vary by state. It reached $2 billion last year, which represented a 10% increase, says Charlie Lakin, who researches residential programs at the University of Minnesota. "But the reality is, it's not growing enough to meet the demand."
Moreover, options may narrow further as budget-strapped states try to hold down spending and the federal government looks for ways to control spending for Medicaid -- the main source of funding such programs -- the concern is that options will further narrow.
The WSJ describes what happened when 79-year-old Anna Dromgoole had to be admitted to the Plano Specialty Hospital and insisted that her 41-year-old son, Kent, who has Down Syndrome, be admitted, too, as there was nowhere for him to go. It was first thought that Anna Dromgoole would only be hospitalized briefly, but this plan "fell apart" when she went into respiratory arrest. The hospital's clinical liaison, Beth Lambdin, has explored a number of options and has had to consider having Kent live with her family. What especially concerned me in reading about this was that
Many people in Ms. Dromgoole's generation didn't expect their children with various developmental problems to outlive them and didn't explore options for them to live on their own. In some cases, they were afraid that something bad would happen to their children without their attentive eye or they were frustrated by lack of options when they did look.
It's estimated that 2.9 million people with "intellectual or developmental disabilities or some significant functional limitation live with caregivers"---their parents, usually, who are 55 years or older. Here in New Jersey, the Department of Human Services was sued last April by 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----when there's a crisis, like the one that Anna and Kent Dromgoole have found themselves in.
But rather than wait for a crisis that seems somewhat inevitable, the time to plan for that tomorrow when parents of disabled children grow elderly and need care themselves is today. We can't forestall or predict every crisis, but we can make preparations. Charlie is quite on his way to mastering using the microwave oven and while I know there's a lot more to cooking than that, it's something to see him come home school, put away his jacket and bookbag and homework folder, and make his own snack. Where Charlie will live when we're going is a recurring topic between Jim and me; one option---in which a disabled adult lives in a house with a staff of caretakes, as depicted in the film The Key of G--is one we're especially interested in.
Crisis is a word that is being heard more and more. Here in New Jersey where I live, Governor Corzine has announced that he plans to cut the state budget by $2.1 billion, yesterday's Star-Ledger reported. I know these sorts of cuts are going to somehow affect the education, supports and services that Charlie and many other individuals with disabilities rely on. Let's make sure that, when the powers that be on boards of education and in state offices make their decisions, they know about what happened to Anna and Kent Dromgoole, and know that we need to do to prpare for the future, before it's too, too late.
Facebook
Twitter
Digg
StumbleUpon
EmailRelated Posts
-
Monday Autism News Potpourri
-
Need School Placement, Move the House
-
Excluded from Health Care Reform--And from Civil Rights
Comments (8)
Comments on Change.org are meant for further exploration and evaluation of the ideas covered in the posts. To that end, we welcome constructive comments. However, we reserve the right to delete comments that are offensive, abusive, or off-topic; that contain ad hominem attacks; or that are designed to subvert or hijack comment threads rather than contribute to them. Repeat offenders may be permanently removed from the site at our discretion.
Author
-
Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
Top Autism Actions
-
-
-
End the Perpetuation of Pity
221 People
-
End the Perpetuation of Pity
Excellent post. If there is a crisis, its not of the epidemic kind, but of the services and support kind. There are organizations that work everyday to help, with little public acknowledgment, such as The Arc's spread across the country. However, one way to make change is if a very large and well funded organization could be brought to bear in lobbying our state and federal governments to increase awareness of this need. Many autistic/disabled folks spend their lives in living conditions that are horrible.
There is also a need to bring together the disabled activist and mental health advocates together. This little known split can be quite wide. Much of the disability community that lobbies for change ignores the needs of the developmentally disabled community and the policies they advocate for are often of no use to those with developmental disabilities.
It would be nice if we could get the focus off of causation and unite to make a change in our government to provide these services along with vocational training and job opportunities. A separate FICA tax, cut from the current to focus on disability before 65, with no income qualification standards would be helpful. The Community Choice Act of 2007 needs to be passed. This could be funded for one year with just a week of the funding currently being spent in Iraq. The money is there, the priorities aren't and that needs to change.
Posted by Robert Adams on 01/04/2009 @ 05:44AM PT
You must be signed in to report content.
"It would be nice if we could get the focus off of causation and unite to make a change in our government to provide these services along with vocational training and job opportunities."
What if the cause is a combination of environmental, diet, maternal health during gestation and/or vaccinations? Should we continue to allow the deterioration of any/all of the above and increase the number of people "on the spectrum"? What will that do to the waiting lists? The strain on health/community/school services?
What if the answer to prevention is: clean up our air, water, food, health and (you know it) safer vaccination schedules? That sounds simple enough to me.
Hey, I've started my family on the better diet and supplements, altered the vaccination schedule to my affected child, and among other personal changes, this has dramatically stopped the following behaviors with my child:
-he sleeps the whole night, 8pm to 6am (yey!)
-he no longer toe-walks
-he no longer has to obsessively opens/closes doors, organizes his trains by color, spell everything, watch the same TV program over and over (the non-verbal Pingu on PBS).
-rarely spins
-became potty trained (yey!)
-he runs away, but stops and comes back if I'm able to manipulate him by enticing him with curiousity. Chasing him becomes a hide-and-seek game. Before he would keep running like Forrest Gump.
-he's speaking better, using whole sentences with mostly the right words.
Even if it doesn't/didn't work for you, changing the "causes" helped my child (and my family, we were losing sleep and changing diapers). Why not see if that helps some others?
Posted by Nate's mom on 01/04/2009 @ 09:32AM PT
You must be signed in to report content.
"Should we continue to allow the deterioration of any/all of the above and increase the number of people "on the spectrum"?
Nate's mom, I have an autism spectrum disorder, so I'm not against allowing others the chance at life like I was given so I'd have to leave it at that.
Waiting lists occur because of a difference in priorities. For instance, The Community Choice Act of 2007, found here: http://www.adapt.org/casa/summary.htmCould be fully funded with the funds spent in Iraq in 5 days. There is a lot of money out there to help, its just that priorities need to be changed.
As to the things your child was doing but no longer does, I did all the same things as a child, but I grew out of those things as well as a child, but I grew out of it. Autism is a developmental disability, not a developmental stasis. We do develop, but on a different timeline.
"What if the answer to prevention is: clean up our air, water, food, health and (you know it) safer vaccination schedules? That sounds simple enough to me. "
I do not wish to prevent myself from being. Perhaps this is not what you meant to say or imply, but its hurtful to read such things.
However, I think we could agree that there are things that are important across beliefs (this is me trying to get the conversation off causation). Some of those things include integration, opportunities for autistic people to attend a school that would tailor its education to how best we learn, independent living options, etc.
Posted by Robert Adams on 01/04/2009 @ 10:02AM PT
You must be signed in to report content.
I can feel for that Mom no matter what age she is or her child, still putting her child first and thinking what will happen. Very sad for this to take place in 2009. I know there is talk of a group home for my sister who is in her 40s and lives with my Mom. She is still grieving my father. I have not spoken to my Mom in eight years, but my sister could come out here as there are many resouces for the blind in Los Angeles.
Our Governor Terminator is always making budget cuts, they say the state will have no more money by end of Feb. Always cut the poor, schools and disabled.
Posted by Bonnie Sayers on 01/04/2009 @ 11:38AM PT
You must be signed in to report content.
I forgot that someone on twitter helped get her brother into a group home somewhere in NJ, maybe Nutley area, same circumstances as my sister, where the father died and the Mom was not moving fast to get the accommodations, she said took about five years to get it all done.
Posted by Bonnie Sayers on 01/04/2009 @ 11:39AM PT
You must be signed in to report content.
well, at least one autistic child should survive the crisis. Jim Carrey has just set up a $50 million trust fund for Jenny and Evan McCarthy
Posted by Mike Stanton on 01/04/2009 @ 04:00PM PT
You must be signed in to report content.
It would be nice if the US govermemt took the fluoride out of 70% of the water the population drinks, that has Lead and arsenic in it. The second thing might help to spot the growth of autism if the father might have his sperm tested to see if has not been contaminated with lead or arsenic or the mothers egg also if that would be possible? All so I am sure that you know that by putting the fluoride into the water it may for birth control and Autism is just an side effect.
Posted by Donald Savitz on 01/05/2009 @ 08:09AM PT
You must be signed in to report content.
@Bonnie, 5 years? What happened in the meantime?
@Mike, Some are so lucky, perhaps.......
Posted by Kristina Chew on 01/05/2009 @ 10:11PM PT
You must be signed in to report content.