Final Results of the National "Natural Support Survey"
April 27, 2011
Purposes and methodology:
The survey was designed to acquire and share various viewpoints, attitudes, successes, and concerns regarding the controversial topic of "natural supports" for individuals with disabilities and their families/caregivers. Additionally, it was hoped that the results would point to needed further research and studies, which the author believes it has.
In the author's view, "natural supports" has become more prominent in discussions regarding providing services for individuals with disabilities - especially in the presence of long - and perhaps never-ending - waitlists for services, particularly for individuals with intellectual and developmental disabilities. Some have posited that "natural supports" shoud fill in the gaps, or perhaps even take the place of, paid services for individuals with disabilities.
A simple eight question survey was developed, and on April 13, 2011, emails were sent to a variety of listservs throughout the country. Using a "viral" technique, each recipient was asked to forward the information about the survey to others, achieving input from across the country. Follow-up emails were sent, further describing the need for the survey and encouraging completion of the survey.
As the survey responses approached 500, and the "open comments" responses were over 300, the survey responses slowed to a trickle, and summaries of the data collected were published as of April 25, 2011. 491 survey responses and 304 written open-ended comments had been posted. Survey-Monkey-supplied-software was used to collate, record and analyze the responses. In addition, individuals outside the development of the survey were asked to review the survey and provide their thoughts and insights.
Differing viewpoints regarding "Natural Supports" are illustrated by two selected comments:
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Most natural supports run
like hell when they see you coming, avoid the phone when your on the other end,
or pretend not to hear the door when you knock. Our child is a handful to say
the least, they wear us out in no time at all and we are supposed to be 'used' to
it. What do you think the parent who is not accustomed to it feels like? In
thirty minutes they are watching the clock tick by and biting what is left of
their nails off, waiting for you to get back. Paid respite is hard to find, free
respite is almost unheard of. It takes a very special family member, or other
'natural support' to be there and be there often. It's a hard job, we try not to
complain often, but when you cut an already short budget it makes one angry!
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My son is now 20 with
high functioning autism. After becoming a single parent when he was four, I had
to develop a strong network of support for him. A good example of one of his
natural supports now is that he had an internship last school year. When summer
came, they asked him to stay on. Since he had no transportation, he asked a
co-worker if he could carpool and gave her money weekly for gas. And they liked
him so much they extended his job through this school year too.
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Some results in a nutshell:
Overall
34% felt they had strong or moderate natural supports
66% felt they had little, minuscule or no natural supports
By age group of the individual with the disability:
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Percent Level of Support Reported for "Natural Supports" by Age of Individual with a Disability
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ages --->
support level
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0-4 (23 respondents)
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5-9 (62 respondents)
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10-14 (76 respondents)
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15-19 (65 respondents)
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19-24 (98 respondents)
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25+ (167 respondents)
|
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Strong
|
26.1%
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14.5%
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13.2%
|
13.8%
|
7.1%
|
10.3%
|
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Moderate
|
13%
|
30.6%
|
23.7%
|
20.0%
|
17.3%
|
20.6%
|
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Little
|
26.1%
|
32.3%
|
27.6%
|
20.0%
|
20.4%
|
18.2%
|
|
Miniscule
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17.4%
|
14.5%
|
13.2%
|
27.7%
|
21.4%
|
22.1%
|
|
No support
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17.4%
|
8.1%
|
22.4%
|
18.5%
|
29.9%
|
28.8%
|
37.5% felt they had "never" been made to feel guilty by other parents. professionals, service folks, articles in magazines/bulletins,
the "system," and/or others regarding my level of having "natural supports"
62.5% felt they had "sometime", "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 my level of having "natural supports"
The most frequent responses to a question asking who provided natural supports were "immediate family," "none that I can think of," and "friends."
The least frequent responses to this question were "neighbors," "church," and "social groups."
71% have received no training in gaining and using natural supports
12.5% have received training in gaining and using natural supports and found it has not been useful.
11.2% have received training in gaining and using natural supports and found it has been somewhat useful
4.9% have received training in gaining and using natural supports and found it has been very useful
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*The entire survey
results with written responses.
*304 written responses to open-ended question 8: "Please
provide comments and thoughts about any aspect of 'natural supports' you would
like to share. This is an anonymous poll." (Word format) These written responses form the heart of the survey and are worth the reading time.
*Comment emails sent to Denver Fox during the survey in addition to the survey comments above.
Selected filtered-response tables and comments (all in .pdf format):
If you are interested in receiving the following, please contact me privately dnvrfox@aol.com
Denver C Fox, Ed.D.
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Comments and additional information from survey readers.