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

[Guest guest]

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

NOEWAIT ; NOEWAITSC

Cc: PAD-CO ; issuespadco ;

IPADDUnite

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€

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€, 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)

[Guest guest]

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

> NOEWAIT ; NOEWAITSC

> Cc: PAD-CO ; issuespadco ;

IPADDUnite

> 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€

> 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€, 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)

>

>