Wednesday, February 2, 2011

No one ever says “When I grow up, I want to live in a nursing home”

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.

- Quinton


  1. So what does this mean? How do we get alternative information when all "they" want to do is isolate us? All over our state drs. are diagnosing and say "you cannot live alone, you need constant care, I'm sorry the only option is a nursing home."

    Out of shock and disbelief ... "ok?" "Help! ... my life is done."

  2. Clifton H. franklin IIFebruary 2, 2011 at 11:46 AM

    I must say that I agree with Quinton. This IS America and we ARE much greater than that!
    Unfortunately, our state government has been "walled-off" from what the people want or need. Our so-called representatives in Albany have purposely separated themselves from "the common folks" and refuse to make cuts in their departments and areas they represent. It's all well and good for there to be budget cuts just as long as it does not affect them or their special interest supporters.
    I would like to suggest that myself and others of a like mind look into creating, circulating, and pursueing a referrendum, getting the # of needed signatures required and present this to Albany in an effort to force them to make the cuts "in their homes" first before cutting services to any of our citizens who need them.
    For instance, the civil servants unions and teachers unions are so powerful in this state that it is next to impossible to get rid of a bad one and, even then, they generally retain their benefits and retirement packages.
    These are the sort of things that can stand a bit of "downsizing!"

  3. As a matter of fact Governor Cuomo is calling for a down-sizing of state government to the tune of 10 percent. Now, we need to keep him to his word that moving individuals from institutional settings back to the community is a key strategy in his plan to reduce Medicaid spending. This can only be facilitiated through diverting funding from institutions to the expansion of housing, transportation, and personal care services that allow individuals to return to their communities. Real Medicaid Reform means the state must assign value to the idea that community based living benefits everyone. Continuing to use Medicaid to institutional people just so they can get the help they need to live must end. Most times, community-based services are less expensive too, usually a third cheaper and offer a higher quality of service because of patient-caretaker ratio of 1:1.

  4. so what happened to the 34 year old all alone in the nursing home? how long is it going to take to make the changes so necessary. i face a fearful future. i understand all the information stated. obvious. will the down sizing of state govt actually effect the situation at hand?

  5. mistake. he was not put in a nursing home - but most of us are. good for him and his bravery. my comments about change and time stand.

  6. This is not just an issue that involves youth, more elderly are placed in nursing homes than any other population group. It is considered an inevitability for most seniors who become "a burden" to their families, or whose long term care becomes impossible for family members to cope with. There are options, other than the warehousing of the disabled in these temporary waiting rooms. It is vitally important that those options are actively promoted and that our legislators are persuaded to support the funding that makes those options available so that the individuals and their families have options to consider that are right for them.