Natural Supports: They're Needed and the Debate is Heated

From AAPD's Associate JFA Moderator (5.10.11):

Natural Supports: They're Needed and the Debate is Heated

“Should natural supports fill in the gaps, or perhaps even take the place of, paid services for individuals with disabilities? With waitlists for services being longer than ever, what role can natural supports play in improving the quality of life for people with disabilities?”

A matter of on-going debate, natural supports spark the interest of many in the disability community, including disability advocate Denver C. Fox. On April 13^th, 2011, Fox sought out to discover what folks really thought about this controversial issue. He developed a simple, eight question survey, e-mailed it to various listservs across the country and, with the help of his “viral technique”, received almost 500 responses.

What did Fox find? While 34% of those surveyed felt they had strong or moderate natural supports, 66% felt they had little, minuscule or no natural supports. Further, not only did a disappointing 62.5% feel they had "sometimes", "frequently" or "a lot" been made to feel guilty by other parents, professionals, service folks, articles in magazines/bulletins, the "system," and/or others regarding their level of having "natural supports," a dismal 71% have received no training in gaining and using natural supports.

What next? Fox indicates that more research is necessary to understand how this important factor plays into PWD's access to independence.  Hopefully, with further research into this area, advocates can help shape policy which will maximize the strengths of PWDs and their communities.   Specifically, Fox says that future research should include:

* Studies which involve parents, families, individuals with disabilities and others who represent ALL perspectives on "natural supports"

* Further refinement in the definition and characteristics of "natural supports" - a term bandied about, but which has unclear and multiple meanings dependent upon the context of the situation and differing individual interpretations.  

 * Emphasis on the effects of aging of the individual with a disability and their family/parents,  as related to access to "natural supports."

* Researching how and if the nature and profoundness of the disability affects access to "natural supports.".  In other words, is it increasingly difficult to gain "natural supports" as  one's disability is more profound, and perhaps incorporates more behavioral and intense needs such as 24/7 supervision, tube-feeding, potential injury to others and self, etc.  What is the effect of the isolation often caused by the intense care of an individual with a disability on opportunities for the caregiver to form natural supports?

* Discovering the factors which increase and decrease access to, and utilization of, "natural supports" as a service delivery system.

* Formulating how realistic it is to consider "natural supports" as a service delivery model or as an adjunct to service delivery.

For more information on the study: http://www.ourwebs.info/naturalsupportmain.htm

Comment Below:

How can these findings be used to provoke greater and more productive conversation regarding natural supports?

How do the results of Fox’s study relate to your own experience with natural supports?

Comments

[Robin R.]

I can tell you that, as a disabled person with primary responsibility for a parent with Alzheimer's, there is little support out there, natural or otherwise. Without Medicare, Medicaid, and private disability, we are both on the street. Transportation is one of the biggest challenges, but food is a close second.
When my father's care went to 24/7 because of his delusional behavior and inability to manage meds, there was no choice except to place him in a nursing home. Without Medicaid, it would cost $300/day. Who can afford that? And the next generation does not feel the obigation that we baby boomers do.
When cuts need to be made, it always goes to the lowest rung on the ladder. At some point, the highest rung needs to take up some of the slack or the country that gave them their success will cease to exist (as will their wealth).

[New Jordans]

Is it fair to be suspicious of an entire profession because of a few bad apples? There are at least two important differences, it seems to me. First, no one doubts that science actually works, whatever mistaken and fraudulent claim may from time to time be offered. But whether there are any "miraculous" cures from faith-healing, beyond the body's own ability to cure itself, is very much at issue. Secondly, the expose' of fraud and error in science is made almost exclusively by science. But the exposure of fraud and error in faith-healing is almost never done by other faith-healers.