Wrong As Wrong Can Be

I have sometimes wondered why parents continue to place their children with disabilities in facilities. I’ll use the word ‘facilities’ because it’s slightly less offensive to me than institution. I believed with the many horrors of institutionlization being revealed that no parent would choose such a placement for their child. But, I was being naïve and had incorrectly assumed that parents had made a conscious choice for a facility placement. What I now know is that sometimes parents are forced into such a decision. I have recently been informed of several examples, and one of those is listed below.

One of my friends is a single mom of a young daughter who is medically fragile. The daughter didn’t start life quite as fragile as she is now, but her medical conditions have deteriorated, and she now needs full-time nursing care. The Mom was trained by hospital personnel to deal with her daughter’s medical issues and equipment. And, the Virginia Medicaid Waiver program, specifically the Technology Waiver, is supposed to provide nursing care for the child when Mom is at work and when the child attends school. Without either the nurse or Mom, the child cannot attend school. Sounds pretty straightforward, doesn’t it? The Mom, with the assistance of the agency that administers the Technology Waiver, arranges for a nurse and a backup nurse, and the child’s life moves forward. The problem is finding a nurse and a backup.

The Virginia Medicaid Waiver program has set rates that it will pay a nurse. That rate is significantly lower than the hourly rate a nurse can get in private duty nursing. It soon becomes obvious that the pool of nurses willing to work for the reduced rate becomes quite small. And, in my more cynical moments, it could also mean that the quality of Medicaid nursing services are less than those of a private duty nurse. None of that matters however. The Mom is locked in to using a Medicaid nurse. Even if she could find someone else, Medicaid would not pay.

Those are all very real problems, but the most significant problem is that nurses get sick themselves. This child’s nurse is currently sick. There is no backup nurse because the pool is so small. The only solution is for Mom to stay home from work and accompany her daughter to school. Mom doesn’t get paid when she doesn’t go to work. It doesn’t take too many of these nurse absences to have a profound financial affect on Mom – a Mom already stretched to her financial limits because of the care her daughter needs. This child’s nurse has been out four days in the last week – a mortgage payment, as Mom describes the impact. Mom doesn’t know when the nurse will be back, and when this situation will be repeated. Her daughter has only been home from the hospital for three months, and already nursing services are crippling the family financially.

Mom has only two options – potentially lose her home and her security because of the financial impact, or place her daughter in a facility which provides round-the-clock nursing care. The current state of our Medicaid system has left this mom with two equally reprehensible choices. This is why children and other family members are still being placed in facilities in this state and around the country. The move to community-based supports is failing families like this, and will continue unless changes are made.

Unfortunately, change will not come quick enough for this particular family. Mom has said she will not, under any circumstances, place her daughter in a facility. I support her in that and will do everything in my power to keep that from happening also. The warning which should be very clear in this post is that such a situation is often only a few steps away for any family with a family member who has a disability. Our current Medicaid system is making a travesty of the move to community supports.

When that move to community if found to be failing, will someone – anyone – look to Medicaid for answers? They will if you and I let our voices and our stories be heard.