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

[Guest guest]

I stand corrected, sir – you’re even more awesome than I realized! We

have a mighty long way to go ourselves here in Illinois. Sometimes it seems

like we go one step forward, then two steps back. I get so tired of it all

sometimes. But then I read something like your story, and I realize I can do it

one more day. Thanks for reminding us what a difference one person can make.

From: dnvrcfox

Sent: Wednesday, May 11, 2011 7:45 AM

IPADDUnite

Subject: Re: Natural Supports: They're Needed and the Debate is

Heated

Thanks - but I have been an activist for 43 years now. Started when they would

not allow Andy to participate in the UCP " graduation " - at a very early age -

and when they lined us up like cattle at the " clinic " and called us in by number

to see the Godly docs, never once introducing themselves (or us).

Yes, Andy attended that so-called " graduation " and, yes, my wife said, " I am

Mrs. Fox, who are you? " - shocking the entire stable of folks standing around

importantly.

It continued when we totally rejected the secondhand - actually condemned -

building with the used buses and non-accredited " teachers " - some reportedly

using electric cattle prods for " discipline " and started our own 6 year program

using over 350 volunteers over a 7 year period.

Hey, we had no right to education, no Medicaid - state or waivers - no nothing.

I worked 3 jobs to pay the medical bills, and we flew to Philadelphia every 3

months for reevaluations for Andy's program.

We had " home schooling " before anyone knew about " home schooling " and we had a

" microboard " before anyone knew there were such things.

It continued when Tim was paralyzed drom the choulders down - and - well, you

all know the story, and, now, at 71 (my wife is 73) we continue the battles,

right now in a big battle over Andy getting Forteo injections for osteoporosis.

It never ends.

====================================================

>

> Way to go, Denver, and to all who completed your survey! You’ve succeeded

in bringing this to the attention of many across the country.

>

> For those newer to this list, Denver is a

grandfather-turned-disability-activist from Colorado, whose chief issue has been

working on eliminating waiting lists for services.

>

> Well done.

> Laurie

>

>

> From: DnvrFox@...

> Sent: Wednesday, May 11, 2011 7:02 AM

> mailto:NOEWAIT%40 ; mailto:NOEWAITSC%40

> Cc: mailto:PAD-CO%40 ; mailto:issuespadco%40 ;

mailto:IPADDUnite%40

> Subject: Natural Supports: They're Needed and the Debate is

Heated

>

>

> From AAPD Justice For All

>

> _http://jfactivist.typepad.com/jfactivist/2011/05/should-natural-supports-fi

> ll-in-the-gaps-or-perhaps-even-take-the-place-of-paid-services-for-individua

> ls-with-disabiliti.htm_

> (http://jfactivist.typepad.com/jfactivist/2011/05/should-nat

>

ural-supports-fill-in-the-gaps-or-perhaps-even-take-the-place-of-paid-services-f\

or-individuals-with-disabiliti.htm)

>

>

> 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?â€Â

> 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 13th, 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 techniqueâ€Â, 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_

(http://www.ourwebs.info/naturalsupportmain.htm)

>

>