Geraldo Rivera and Community Living Options for People with Disabilities

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.

Questions--Proposed Medicaid Cuts

Have you seen the proposed Medicaid cuts? Do you notice that these cuts only affect the sickest and neediest people in the country and their caregivers?

Do you notice that the things being cut are necessary items—in other words, when Medicaid stops paying for these things someone else will have to? Do you realize that this sort of shell game—shuffling who pays for a something essential—makes agencies look good, but actually saves taxpayers nothing? (What difference does it make to the taxpayer if their federal taxes go down $5 and their state taxes go up $5???)

And do you notice that these cuts position people with disabilities as the enemy of the budget? These are not proposals to cut waste, manage budgets and eliminate fraud, these are proposals to cut care. The agency has nothing to lose. If we can’t gather the support to overturn the changes the only people who will suffer are a nearly invisible minority, and if we can muster the support any higher costs can be blamed on us… Lovely.

If these cuts go through care issues for people with disabilities will be elevated from a national struggle to a national crisis. Private insurers certainly will not pick up the difference. This could well create the demand for Universal Healthcare…do you think that’s the intent?

Are we going to be overwhelmed or build an opportunity?

Where can we start?

First read this article.

It is not a bad one, honest! The first page is an introduction, on page 2 is a really easy to read chart about all 6 of the proposed cuts. That is followed by a discussion of each of the cuts that tells what we had before, what the cut is and what the impact of the cut will be. After that is the appendix with supporting data.

Just pick the issue or two from the chart that matter to you and read the narrative on those if you want.

Next choose your level of involvement:

If you just want to dip your toe into this issue pick the one or two cuts that upset you the most and call your legislator’s office and tell them your thoughts. (The person who answers the phone may speak to you, or they may have you speak to a staff person who knows about the issue—either is fine. They will ask for your name and address to confirm that you are in their district.) The whole thing will take 15 minutes at the most.

Good job!

If you want to wade a little deeper make the call as above and write your concerns into a letter. Make your letter personal—show why these cuts will harm you or your child and include a picture of yourself or your child in it (imbedded/printed right on the letter is best.) E-mail it to your legislators and the president. Then, brainstorm who else you can send it to: Would your friends want to support this? Your co-workers? Your school district? Your doctor’s office?

Click send.

Nice work!

If you feel this is something you really need to dive into, do all of the above and call your legislators’ offices and make an appointment to go visit. You can go to your local office, you can bring your friends—keep your appointment and stay on target (politicians like people and will want to talk about how you like the new park in your neighborhood or how the bridge named after them is working out!) Bring your letter and leave it with them.

Excellent!

A trip to your legislators offices in Washington can be very effective as well. March 2, 3 and 4th is the Disability Policy Seminar in Washington. This conference will give attendees a course on all of the disability-related issues before congress at this time and on the last day you will make appointments and go talk to your legislators about the issues. It is a whirlwind event—extremely worthwhile.

Hope I see you there!