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August 07, 2006

Comments

Denise Cronen

Caring for our caregivers as it relates to autism or any other disorder/disabilty is a relevant and timely topic. My profession as a public school kindergarten teacher has lead me to work with several autistic children over the past few years. Currently, I have a severely autistic boy in my class. I know his parents well having taught their daughter several years earlier. I observe Ben each day as he exhibits screaming, crying, tantrums, table banging, self injuring behaviors (biting). I can only begin to imagine what his time at home is like in a more unstructured setting with less adult support. I know that sleep deficits, bathing and eating issues are a daily problem too. The parents need and deserve help. Their bodies, minds, hearts and souls must be nurtured so that they can begin anew each day. I see the visible exhaustion and weariness on their faces. We must appeal to our health care providers to pay for the daily "life support" for these caregivers. They face a very long road in caring for their child.

We can also look to those of us who have parents with Alzheimer's Disease. Whether it be the spouse or the adult child providing the care, the "price" for this support is enormous. The populations today requiring support physically and mentally are growing. Our health care system needs to take a look at how we can begin caring for our caregivers. Otherwise the cumulative expenses will increase and multiply in the near future. Let's be proactive.

Margaret Waters

It’s encouraging to hear a conversation about the need to support caretakers of people with autism (and other conditions requiring ongoing family support) over the long haul. Not just simply “crisis intervention” to get families through particularly hard times, but authentic “life support” that expands and contracts with the changing needs of all involved. Short of the promise of a fountain of youth and perfect health, caretakers of autistic children (growing into autistic adults) would certainly embrace a societal covenant which recognized their invaluable role in their children’s lives, and which honored this effort through meaningful supports, including comprehensive health care -- for body and mind and spirit.

Of course the whole way we think about health care (and especially decisions about how and if we fund it) is at the heart of so many struggles for so many families and individuals. One need not have a child with autism to understand the incredible vulnerability we all face under the vagaries of a health care system so fragmented and dependent on the “kindness of others” (i.e., being employed, being deemed eligible by the whim a particular administration over a particular period of time). I was pleased to read an article in the Health/Science section of the) Boston Globe the other day (12/11) about how health care advocacy courses are beginning to be integrated into medical school training. This new model brings medical staff into a larger context of health care, in which patients can’t be separated out from the families, communities and life circumstances in which they live. I feel healthier just thinking about it! Let’s hear it for education catching up with reality.

Carol Johnson-Haywood

This is an interesting topic that I hadn't really given much thought to from the health cost perspective. Interestingly, we are currently trying to connect a group of parents of students with significant disabilities for just that reason - support. We live in rural northern New England and there aren't many support services up here for the students - let alone their caregivers! It will be interesting to see if this group takes off, and if it does whether the focus will be social and support, or support and issues. Maybe some of all!

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