Not very long after my daughter with Down syndrome was born I went to a conference about some sort of disability issue. I don’t actually remember the topic of the training, what I remember, that cut me to my soul, was the conversation at my lunch table between a young woman with Down syndrome and her mom.
The woman was about 20 I thought and she was complaining hard to her mother about how much she hated her job… her mom put her off and told her that she couldn’t change her job because her home situation was attached to her job. The young woman was quiet for about a minute then she said that was fine because she hated her house too. She went on to say she hated her roommate, hated that she couldn’t paint her room the color she wanted. Her final sentence was that she shouldn’t be in prison because she hadn’t done anything wrong.
I drove home thinking about that gal with tears streaming down my face. I knew that a lot of what she was doing was ‘putting on a drama for her mama’ (as we call that at our house.) I also knew she wasn’t wrong—she lived a system-based life and she did NOT have a lot of choices. I was pretty choked up when I was telling my husband about it and we determined that afternoon that we wanted Jennifer to have what we call “a life anyone would want.” Nothing else could be acceptable.
This article appeared in my local newspaper yesterday. It tells the story of a local girl with a spinal cord injury who is successfully hosted Christmas in her own home after moving out of a nursing home this year. They say the road has been rocky at times (which it is for anyone who lives on their own—if we have one more plumbing problem this month I am moving!!!) And she feels like it has been worth it.
Tonight ‘Geraldo At Large’ also highlighted the importance of community living options for people with disabilities tonight. (The preview I have is all that is available so far, but I will post or link to the rest if it becomes available. It was really good food for thought.)
The points in tonight’s show were clear:
• Community based living options are cheaper for taxpayers than institution-based care.
• Any kind of care that can be provided in a large institution can be provided in a smaller setting in a community.
• A conservative estimate of the waiting list for services for adults with disabilities is >700,000 people.
• People with disabilities deserve and need to be part of their communities—for education, for employment, and for choices for living. With these opportunities they can contribute to their communities.
• As Geraldo Rivera said in the program, “In these economic times the fear is that the people who will lose the most are those who are the quietest—the elderly, the ill and those with disabilities.” (This is a paraphrase—I only heard it once, but I will link when it becomes available and you will be able to hear it for yourself.)
States are cutting their Medicaid money and leaving people with disabilites more dependent.
Let your voice be heard to end the waiting lists, to fund Medicaid waivers and for cost-effective community living options for people with disabilities. Vote on Change.org (Just click on the widget up above), write to your representatives, write letters to your editors. Get this issue on the country's radar screen now--waiting will lead to deeper crises of neglect in health, housing and opportunity for people with disabilities
Other articles about lives anyone would want here and here and lots more here.
Picture from here.
15 comments:
As always, you are correct 100%. Would have liked to have seen the full program. The video was a "preview". The old footage of willowbrooke reminds me of what I saw in the state institution in Illinois in 1968, but there it was better. Everyone was clothed and clean, but there were few activities.
Your post has caused an ever present anxiety-fear-worry...
one that, because Junior is only 7 I push to the back of my mind..,
"What happens when he grows up or if something dreadful happens to us"?
I love him so much. To me he is the "bestest ever"...so what happens?
I put up a link to this post, I hope you do not mind.
Apparently they were running the show again last night so I will check in a minute to see if the whole show is up... I will also link to the widget post...
I completely agree with you. My daughter is awesome and I work every day to get her ready for the world and it ready for her because that awesomeness is as valuable as anything anyone brings to the community and it should shine!
Thanks for the link!
Hi Terri and All..
Well Medicaid isn't the issue for us, but who will be Us for our daughter after we are dead? I worked in group homes that were disturbing to say the least and so we have people come to our home to be with our daughter when we work. She is 29 now and owns the home we live in and owns her car...but she needs help with everything..and who will provide management and oversight when we are gone? My family and our daughter's dad's family have rejected contact so that family as oversight is non existent. the local Arc is a joke when it comes to oversight. Even the limited oversight they have for provider agencies such as DSS here in Texas is in name only. Neglect is rampant and the ARC turns a deaf ear to anyone making waves about the problem. Is there any agency in any state that might act as case management for someone who lives in their own home and needs 24 hour care? I have tried to hook up with other parents of adults..with no success as of yet. Any ideas anyone?
Many thanks for letting me put several sets of cards on the table.
Amy
In NY you can get case management at home (though I do think you qualify through Medicaid.) There is also such thing as a circle of support which I think I have heard of being formalized. Good sources, I think would be Carol Blessing at Cornell University, or Beth Mount (you can google her.) Best, best, best of luck!!
Oops, meant to say: any other ideas anyone???
The lady who wants to know who will be there for her daughter after they are dead, I highly recommend a Special Needs Trust. There is a lady in KY Carolyn Wheeler who knows how to set them up the right way. If you use an attorney please make sure they know what they are doing. In KY there are only 12 Lawyers Carolyn Wheeler recommends, however Carolyn can tell you everything you need to know about them. If you want her phone number please let me know and I will send it back on this post
I am impressed with the set-up anonymous-in-Texas already has. I cannot help but believe private case management is available, and the words "Special Needs Trust" sound correct for exploration. I live in Texas, and am certain there are sources for this situation here.
Quality-of-life in a group home or institution is not expensive. It requires people who care and are invested in the same principles for what means a good quality of life.
Anonymous-in-Texas shows clearly, being dependent on government programs is NOT the way to go.
Cutting Medicaid reverts responsibility to families, the people who should care the most.
Can you find a real comparison of what it takes to launch a child without a disability vs. one with - meaning, it costs for any child to leave their family home?
If you can get over your r-word sensitivity, you might find this post interesting:
http://thepioneerwoman.com/confessions/ - the post for Dec 27.
A special needs trust is a bank account that a person with a disability may have that allows them to save money for special things such as vacations or a TV or something. The person can own this money without endangering eligibility for services and it cannot be used for food/clothing/shelter/etc.
They are available through knowledgeable lawyers and through some insurance companies (MetLife for one.) I do not know if the trust could be used to sustain a circle of support or microboard, or self-determination type of situation, but your advisor will know that. I do not know the availability of private service-coordination, I only mentioned the things I have learned so far, but if you have the money, I am sure they will come!
I do not feel, nor would I advocate that the only two choices for adults with disabilities is personal wealth or government dependence. I find all-or-nothing posturing limits creative thinking. Find out what all the options are and what their advantages/disadvantages are for your situation and make the best decision for your situation. Launching our kids and sustaining them beyond ourselves is very challenging in part because the income they are able to generate is often not sufficient to meet the needs they have (and in NY minimum wage is not even required for some people with disabilities.)
And, Gentle Readers, there is no reason to give up your expectation of kind language/treatment to read the post Barbara recommends. There is no mean name-calling on that site, just a little title-fumbling. If you read it now it will give you a preview of my next post as I started writing about it this weekend.
“I find all-or-nothing posturing limits creative thinking.” I consider the Ban-the-R-word an all-or-nothing posture.
“PS: Changing language is not enough to fix the world, but language IS one of the components of oppression ….ALL of the components of oppression must be dismantled—language is as good a place to start as any.” From http://bbandbohmy.blogspot.com/2008/08/mama-bear-and-tropic-thunder.html
12 (!) posts beating-up Tropic Thunder for using the R-word put you in the ‘sensitive’ category. The word retarded is used more and for other reasons than as an epithet.
I disagree with methods like the ban the R-word campaign. I doubt its effectiveness for changing people’s minds, and it did little to reduce attendance to the movie Tropic Thunder.
I hate waste. Public awareness campaigns appear to be waste to me. The true and most influence you have are with those who (communicate) read your blog directly – that is, if they are not already of a like mind (preaching to the choir).
But it does feel good, doesn’t it; to think we are having an effect? Like when we ‘vote’ online. Aha. http://www.therextras.com/therextras/2008/04/feel-good.html
Not buying it, myself. The media has duped many into believing in problems that do not exist and into thinking that participating in ‘campaigns’ changes things.
“Let your voice be heard to end the waiting lists, to fund Medicaid waivers and for cost-effective community living options for people with disabilities.”
This reminds me of an old (not-so-funny) joke. The food critic exclaimed that the food at the restaurant was terrible. And the portions were too small.
I am opposed to campaigns to increase funding of government-funded programs that people complain about. Fix the programs. Reduce wasted use of funds.
I do not believe you can legislate or regulate personal care staff to care. To a person, someone must care for a dependent person enough to influence the care provided by others. And that is what Anonymous in Texas is asking for – how to find someone like that. Here is my last reference link: http://parentingacomplexadult.blogspot.com/2008/12/planning-for-and-protecting-your-child.html.
While we do not agree, Terri, I do appreciate your efforts and your work in this blog.
That is the difference and inspiration you provide to the followers of your blog.
Your positions take creativity, passion, and concern, and love.
Your approach to advocacy, is humanistic, uplifting and motivating.
Without courage there is no reward!
Terri you speak with passion and find numerous ways for others to think about the meaning and value of our life's experiences.
Where is the reward in what is suggested by "the extras"......
what do we do next.........
To "The extas" words, those are empty thoughts they die when they are spoke.
Terri your thoughts and suggestions resonate and live on in our everyday lives.
Thanks for Blogging, Terri!
Happy New Yeat.
HI TERI
THANKS FOR THE RWORD LINK --THAT'S BEEN A BIG ISSUE FOR ME FOR YEARS---
I JUST WANT TO SAY THAT I THINK THAT
IT'S IMPORTANT THAT WE CLARIFY THAT
SPEEDING UP THE WAIT LIST JUST TO GET PEOPLE INTO DAY PROGRAMS,SHELTERED WORKSHOPS AND GROUP "HOMES" IS NOT ACCEPTABLE---IF FAMILIES ARE UTTERLY DISTRESSED AND HAVE NO WAY TO PURSUE INDIVIDUAL SERVICES ,YES I KNOW TRADITIONAL AGENCIES EVEN WITH SEGREGATED PROGRAMS ARE BETTER THAN NOTHING BUT WE MUST ALL PUSH TO MOVE THE CONTINUUM FORWARD
Thanks Joe, I agree with you. Funding the Medicaid Waiver fixes the institutional bias of Medicaid (where the money gets allocated to institutions/agencies like sheltered workshops, etc) and allows the money to follow the person. This allows people to set up their lives within their communities, and only pay for services they actually want or need. It is a step in the right direction, I think.
This is a response for "Amy/Anonymous":
I work at The Arc of Texas and would love the opportunity to talk with you some more about your frustrations with the current service delivery system as well as your frustration with your local chapter of The Arc. I would also like to clarify that The Arc of Texas and its 38 local chapters do not monitor or regulate service providers. Instead, this function and responsibility rests at the Department of Aging and Disability Services (DADS).
If there are problems with a provider in your area, please report the problems directly to the office of Consumer Rights and Services at DADS: 1-800-458-9858.
Sincerely,
Amy Mizcles
Director of Governmental Affairs
The Arc of Texas
amizcles@thearcoftexas.org
Thank you, Amy. Your support is appreciated!
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