Disability Awareness Day 2007

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?