Disablity Awareness Day 2007

Fran, Rhiannon & Carl at Disability Awareness Day

Yesterday Fran, Rhiannon and I went to the Georgia State Capital to participate in Disability Awareness Day, with some 1700 other disabled persons, their family and friends, and community advocates. For us, this is an opportunity to support efforts to increase funding for disabled persons who would like options beyond simply relying on (too often limited) family resources or else ending up in subsistence situations (such as nursing homes). Even though Rhiannon’s disabilities are so complex that she will likely never earn a wage, for many disabled persons the right kind of support can enable them to hold a job, earn money, and pay taxes. The sign I’m holding points to one of key concerns among the disabled: historically, public support for the disabled has often been paternalistically administered: “we’ll decide what kind of services you need.” By contrast, the concept of “Money following the person” points to a new paradigm where the disabled and their caregivers have greater control over determining the scope of support they need, with public funding following their lead, rather than forcing the disabled to “fit in” to a cookie cutter support network. Critical to disability issues — at least in Georgia, but I suspect elsewhere as well — is the lack of funding. Currently in Georgia funding is only available to support about a third of the people who need help. What happens to all the thousands of disabled persons who don’t receive public support? Well, if they’re lucky, their family shoulders the burden. If the family can’t afford it… well, how do you spell poverty? Or institutionalization?

John D McColman: Obituary and Reminiscence
Completing the Hospice Journey
Rhiannon's Vigil and Funeral
  • http://satyrblade.livejournal.com/ satyrblade

    And on a related note, I just heard from a friend of mine (my old roommate) who’s partially disabled by a lifetime case of rheumatoid arthritis, that she might very well lose her house because the benefits she depends upon to… oh, SURVIVE are cut if she works.

    This friend is a graphic artist, and she can – and wants to – make a passable amount of income doing websites and other graphics. To do so, however, she must either take those payments under the table (that is, illegally), or risk losing the income that allows her to pay her bills, get her medication, and have the occasional surgeries needed to keep her hands and feet functional. (As it is, her hands and feet are so badly twisted from the disease that she can hardly walk or hold things between her fingers.)

    The “benefits,” however, are not enough to keep up with the cost of living in the house she inherited from her late husband 15 years ago. So yeah, there it is: thanks to a lifetime disease and an idiotic system, my friend can either work outside that system and risk losing everything at any time, or she can subsist at a barely-poverty income in the San Francisco Bay area… or she can leave the place that has been home for all of her 47 years of life. The “disabilities benefits” in many places FORCE a person to be wholly dependent upon the system if they are to survive at all. There’s something not only wrong but stupid about a state of affairs that prevents handicapped people from earning their own money while still defraying the horrendous costs of their treatment.

  • http://wheezinggirl.livejournal.com/ wheezinggirl

    That is awesome that you guys were out for that yesterday. Thanks for posting the picture.

    We miss you guys and we need to get together soon. We are on vacation next week but we should pencil something in after that. Tell Fran and Rhiannon that we miss them too!

    • http://anamchara.com/ Carl McColman

      We miss you guys, too. As I approach the second-year anniversary of becoming a Catholic, I also have some ideas about the differing experiences of cradle Catholics and convert Catholics that I’d love to bounce off of you. Email me with some Saturday evening possibilities after you guys return from your trip, and I’m sure we’ll get together soon…