I awoke this beautiful 4th of July morning in the comfort of my own home, dressed, and got online to read the world’s happenings. The cover story of the Knoxville-News Sentinel, my local paper, was about a young man about my age in a battle with the state to do these very things–live in his home with family, do activities he enjoys, and maintain his current quality of life in spite of having cerebral palsy.
Chris Hughes is one of 680 disabled Tennesseans who will have his current homecare services cut as Tennessee looks for ways to cut $47 million from the budget of Department of Intellectual & Developmental Disabilities (DIDD). The state, like many others across the country, faces tough choices as they must find ways to balance the budget while caring for those in need. Tennessee had been the only state to champion homecare beneficiaries needing two personal assistants to live at home, but the state is now forced to scale back services under the tremendous financial pressure of a lagging economy and a budget shortfall of $1 billion according to the Kaiser Family Foundation. Though homecare is overwhelmingly preferred by millions of the elderly and disabled like Chris across the country, cuts like what’s happening in Tennessee leave some with few options as their homecare services are stripped away.
Isn’t homecare less expensive? DIDD Commissioner Jim Henry said it may be true that even some high-need beneficiaries save a significant amount of money by receiving homecare services instead of going into “medically skilled community homes”. Chris’ mother and caregiver, Cathy, is convinced that it is cheaper for her son to remain at home where his risk of infection is lower and quality of life is higher. According to the article, Cathy “doesn’t think her son would get the intense attention he needs to communicate. She doubts he would get to listen to his music, read his books, go camping or fishing. She’s worried that, without her constant attention, he’d get sick or die from an infection or aspirating liquid.” Serious concerns from a parent who sold her company to become a full-time caregiver for her son and, along with two aides, has kept Chris healthy with only one hospitalization in spite of being tube fed for years.
Cathy’s concerns echo across the nation as many caregivers struggle to find resources for their loved ones and provide a higher quality of life than an institutionalized setting can provide. Using his computer to communicate, Chris slowly types, “I…don’t…want…go” when discussions about him entering a community unit an hour away arise. Cathy explains to The Sentinel, “DIDD has not been our enemy; they’ve been the best thing to happen to us. … We want him to have quality of life. That’s what the state taught us.”
With thousands more on the Tennessee DIDD wait-list, it is important to start asking how we can restructure our current health care services to better take advantage of homecare’s low cost alternative to nursing home care where millions like Chris across the country can be free and independent with their families. Isn’t that what the American Dream is about? As I see the flags waving and fireworks cracking around us today, my thoughts turn to Chris and how he deserves to have his own independence at home where he prefers to live, gets sick less often, and can maintain his quality of life.