I once worked for 34-year old man with a spinal cord injury who was diagnosed with a serious infection. Rather than go to the hospital and be discharged to a nursing home for an undetermined period of time, he decided to decline medical care and, in his words, “die at home”. Our failure in the long-term care system is forcing young people to choose between a life of isolation or death. In a country that prides itself on freedom and choice, we are robbing persons with disabilities of both.
Young people can end up in nursing homes for a variety of reasons – brain or spinal injuries, disabilities from birth including developmental disabilities, and complex medical conditions. Often, as a young person becomes older their care needs become more complex and family caregivers do not have the financial or emotional reserves to look after them. It’s not easy for the person or the family. But the long-term care system prioritizes nursing home care over home and community-based supports, regardless of individual preference. And so, in New York more than 6,000 young people under age 21, and thousands more in their early 20s are forced to live in nursing homes.
Without friends. Without family.
It’s strange that nursing home care is a mandatory item under the Medicaid program, while cost-effective home and community based alternatives are not.
We owe more to our young people than to place them in facilities designed to manage end-of-life events and remove them from the presence of family and friends. We need to develop sustainable opportunities for people to have a choice in where they live and how they receive care. We need to urge legislators that state and other agencies need to be held accountable for forcing young persons into segregated facilities like chattle, and that home and community based services can offer a viable solution to escalating Medicaid costs. More than that, we need to work together towards a shared vision for young persons with disabilities that allow them to be vibrant, healthy, and contributing members of the community. We owe at least that much to the thousands of young people who are living in remote facilities across the country, hoping to one day return to where they belong.