Are There Really "Natural Supports" for Individuals with Disabilities?

Final Results of the National "Natural Support Survey" and a Call for ResearchDenver C Fox, Ed.D., Parent

Nearly 500 people took the Survey, 66% said that they felt they had little, minuscule or no natural supports.


The survey was designed as a very informal study 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 I decided to publish the summaries and data collected 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.

Sample Comments:
(Click Here to read them all.)

'When someone (state workers) tell me that taking care of my child is my duty, I
Cry. I need help. I try but get exhausted/sick or need to run errands. Can't. My
family is strong, but not always available."

"People offer, but after a while, unless they have personal experience, they drop
away. They expect "progress" and don't see any."

"I provide care for a young lady with MR and Bipolar Disorder. She has a very
hard time making and keeping friends due to her disability. She was doing better
with behavior and mental health services but her services have been cut in half.
She is now in teir 4 and has lost her dental and mental health. She has to
decide between having a companion and getting behavior services. She has a
little of both but it is not enough. I feel sad for her because she has so much
potential. Her mother was a drug user and that probably caused her disability.
This young lady has been let down her entire life. She has no family or real
friends and depends on paid supports."

"Most people are willing to help for a limited amount of time. No one would
commit to long term help for a long term disability."

"Natural supports are intermitent, unreliable, are not for long term needs, are not trained for complex care (medical, emotional), are mostly available when the children are young, have their own lives/jobs/families/concerns, could evolve into feelings that the PWD is a burden or they continue helping begrudingly, are for a limited time period (usually only for a brief break or a few hours - not for overnights, vacations, etc.), live far away, lack commitment."

"While there are some more temporary people in his life, there is no one who I
can depend on regularly. Not even family."

"We were able to hire our son's aide from school to help on occassion. Our
parents are too old and do not know how to interact with him nor can they
lift/transfer him."

"College volunteers from a religious club"

"for socializing but not for caregiving"

"Natural supports are a fiction! Even in cases that claim to have used "natural
supports" I have found the truth to be that those "n.s" were being paid or
bartering for some quid pro quo. In my lengthy experience walking this path I
have never seen true "natural supports". It does real harm to keep putting this
out to the public as a solution to anything!"

"We are the natural supports and the necessity is lifelong. There are more and
more needs with the the degree and complexity of an individuals disability. Most
people that push natural supports have never walked in our shoes, and yes it is
the easy answer to budget issues. One of the worst parts is that we have to keep
educating the world that this doesn't just last a week, month, or years but a
lifetime and it gets even more difficult when a person reaches 21."

"Natural supports is another term for free help. Not many people with time nor
the talent to help with my child."

"There are people who feel and try to make us feel, as if our child with a handicap
is our "lot if life" and we should just put up with it and not try to look for help,
unless we pay for it. Of course the "child" they are talking about is 33, while they
go about their business of vacations and tennis lessons."

"Natural supports are great when available. They must be nurtured, and as the
sole caregiver I do not have time to nurture these relationships. My teen-age
son has outgrown the cute stage. We live in a small mountain community.
People in the community will rally with support in times of great need (like if I had
to go to the hospital), but on a day to day basis I am on my own. For example, I
can hardly even get outside for exercise because I am afraid to leave my son
alone in the house. There have been times when I have gone outside to fill the
birdfeeders, which are right noxt to the house, and walked back inside to a
'disaster.' Now that he is eligible for adult services he is on a waiting list for
agency supports that are only provided in a community 45 minutes away. Yikes.
The church has been of no support, the child's mom left because she was bored
with his disability, my parents are aged and have their own needs for support. I
am tired, but still here."

"As a military family, we are far from extended family who would otherwise be
"natural supports" and I have only asked friends to care for my child during
moves."

"I think money is the only language that is spoken in
natural support land."

"Natural supports are not an option for my son. He requires 24/7 line of sight
care because he is non-verbal, mobile and lacks safety precautions. He requires
assistance for all activities. Most adults - neighbors, family, friends - want easy
"playdates" where the kids go play and they continue on with their adult duties.
Natural supports are not an option for our situation."

"My parents have both passed away. When they were alive, they were very
helpful. My husband's family is not supportive at all and my only sister lives 2000
miles away. In an extreme emergency I could call a neighbor or friend but would
not do so unless it was a very real emergency."

"While being on the Wait~List for several years now, I don't know what I would do
without family support!"

"My disabled child is 10 and I am 47. I have two older sisters who are busy with
their grandchildren. The idea of natural supports is great, but when you try to
apply it you find there is no one who wants to get involved. They dont have the
time, or they are afraid. Or any number of other reasons. So its all left to me and
my husband. It has wrecked my health."

"Im glad to share this info with someone other than my supposedly case manager
yeah right.I have cp which causes me to require total physical assistance.Im a
29yr old causcian female.I live alone.I do have a relationship with my father but
its toxic.He's an alcholic and verbal abusive towards me.Yet my case manager is
telling me that i have to utilize him for natural supports.I pray that i dont loose my independence and the state force me back into a violital situation."

"I think most people think it is as easy as 1-2-3...just going out, meeting people, &
BAM! There is your social network. If you are not in the life of raising a child w/ a
disability, then one will never know how utterly difficult it can be to connect with
others. The truth is that some people, yes, even family, do not want anything to
do with you, or it might not be healthy to be around their negativity. Any way you
look at it, "natural supports" is not the answer, nor will it ever be."

"My son is too severe for someone to want to care for. If there is an absolute
emergency, I might be able to get someone to watch him for an hour. No one
wants to get beat up or chase a child down the road for even what respite
workers and behavioral assistants are paid. I have offered to pay friends and
they still say no way."

"It is difficult to depend on others to help..They have their own interests and
motivations that can conflict with ours. (my husband and myself) Everyone
wants to get paid for helping...even "natural supports"."

"Natural supports are not trained professionals and should not be used in place of
them but rather in conjunction with them."

"I believe we should look to ourselves and our immediate and extended family
and friends before looking to the government for support for our unique
blessings."

"I receive good emotional support from church, friends, and support groups but
very little practical support. Another question you might have asked is, what
kinds of support do you receive from "natural supports."

"As supportive and lovely as friends and church are, they are not willing to enter
in the world of lifting, diaper changes, medication administration, g-tube use, etc.
that my son requires. To ask these folks to do so would be more than intrusive -
it would be dangerous."

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