People have totally missed the point. The problem is that we don’t have enough services available and help to care for our children at home. That is the real issue behind this whole mess.
Furthermore, people have now had a day or so to think about this and seem to believe that it’s a viable option for caring with severely disabled children as they get older. What? I thought the real issue was about Ashley’s quality of life? Now, it’s about an alternative to lifting her. That seems to be a real concern from a lot of the blogs and forums that I have read. Many of the comments go something like this, “Yes, I know so and so they they are worried they won’t be able to lift her” or on a medical student’s blog, “I have a patient and her mother is worried about how she is going to lift her child”. Yes, it is difficult to lift these children but don’t we have better answers?
The segment of the population that I am not hearing much from are the physiatrists and physical therapists. Why aren’t they speaking out about alternatives to the lifting? And where are the federal lawmakers on this? Are they increasing funds for home based services fast enough to be of real assistance to these families? Is anyone mandating that we provide licensed daycare centers to help care for severely disabled children to take some of the burden off the parents? And what about the health insurance plans? Many have eliminated services such as private duty nursing which would help us parents get some sleep or help us with caretaking such as giving them a bath. And why are we decreasing physical, occupational and speech therapy visits under most health plans? And what about the Respite programs? Are we increasing funding there and do we have any training programs in place so we can find good, safe and trained workers? And what about Durable Medical Equipment limits? Our plan limits this to $2,000 per year. Dear Son’s wheelchair was almost $10,000 and I don’t have estimates yet for our hydrolic bath lift or the hospital bed. Where should we go? What should we do?
The only insurance that offers to pay for many of these items is Medicaid. Yes, many states have health insurance plans for special needs that cover items where the primary insurance leaves off (they do this for low income) however many of these plans don’t cover private duty nursing and don’t pay for diapers. If you can work full time this may not be an issue but without any daycare or resources, your options become limited real fast. Could you continue to work your full time job without any daycare or Respite workers available to care for your children? In most cases, the answer is no. And what if everyone didn't have daycare for their children? There would be a national outrage. But it's o.k. for us not to have this for the most severely affected children.
We need assistance to keep these children at home. I did some research a few years back and asked some questions and the estimate that I received was that it cost the state $30,000 a month to care for a child in a state home. Any of the programs that would be instituted to keep our children at home would be cheaper than that. We can’t allow people to think that stunting a child’s growth is an acceptable alternative to these problems.
The issues that we have with severely disabled children aren’t all that much different from the issues of the elderly who end up in nursing homes, unable to care for themselves. There are issues with lifting them, they need their diapers changed, their mental functioning is deteriorating and they can’t function independently. This being the case, I think we are opening a Pandora’s box here. If we begin to think these alternatives are acceptable for our severely disabled children, then I suppose it won’t be long before it’s an acceptable alternative for our elderly parents or even us? Just remember, we will all get old someday and there are a lot of illnesses that involve mental deterioration to the point where the elderly are acting like children. Will the new rules be when dementia sets in, you lose your basic rights? Or will it just be o.k because you are too far gone to know?
I think we need to get back to the real issue pretty fast. The real issue is we need better services and resources to care for our severely disabled children and those same resources need to be available for adults.
And finally, the "Ashley Treatment" is never o.k. Early on, I had a little test that I used to do when I was faced with a difficult decision with Dear Son. The test was this: if I could look him in the eye and tell him why I made the choice, and I felt good about it, then it was always the right decision. People are quick to think these kids don't get it, because their physical and mental abilities are so severe. They get it all right. Just look them in the eye.
P.S. You can read more about Dear Son here and here.
*As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.