Survey on Assistive Technology Barriers

[F. Pennell]

The National Parent Network on Disabilities sent the following survey
which I thought many of you might find to be of interest.  If you are
responding from Washington state, we would really appreciate it if you
would copy the Washington Assistive Technology Alliance so that we will
also have the benefit of your experiences.  You can send your responses to
us at uwat at u.washington.edu or fpennell at u.washington.edu.  

The NPND is hoping to get responses back by the end of September.

Francie Pennell
****************
Date: Mon, 13 Sep 1999 11:45:03 -0400
From: NPND <npnd at cs.net>
To: npnd at cs.net
Subject: Survey on Assistive Technology Barriers

REPORT ON ASSISTIVE TECHNOLOGY BARRIERS

The Assistive Technology Act of 1998 requires the National Council on
Disability to submit to Congress a report on assistive technology policy
barriers.  The Association of Tech Act Projects (ATAP) has asked NPND to
help obtain information for this report including how vital assistive
technology is in the lives of individuals with disabilities, as well as
how parents have to struggle to find and pay for appropriate assistive
technology.  Congress especially needs to hear of the needs of minority
and traditionally underserved populations.  A brief description is
included at the beginning of the survey.

If assistive technology is a part of your organization's, family's and/or
child's life, would you please take a moment to fill out this survey.
Please return the survey by e-mail:  npnd at cs.net, or by fax:  617-847-1593.

Help us help Congress understand.  Thank you!

****************************************************************************

NAME____________________________________________________________________

CITY_________________________________ STATE________________________

The National Council on Disability is preparing a report for Congress.
Congress wants to understand the barriers faced by users of those assistive
devices such as volume control phones, easy grip garden tools, and
wheelchairs that make life easier called Assistive Technology or AT.
Whether you or your family member use simple low technology devices such as
divided pillboxes, or sophisticated high technology voice-activated
computers or augmentative communication devices, have you run into barriers
finding and paying for the appropriate devices? Please read over the
attached list at the end of the survey. We need your help in making it a
complete and accurate reflection of the problems everyone encounters. Take
as much space as you need for answers.

Are these barriers you have encountered? /___/ no /___/ yes. 
Please tell us your story about how you got around these barriers as well
as any that are missing.

For example: Did you /___/ Pay for the device you needed out of your own
pocket?

/___/ Make do with something else? What?
/___/ Find a service group (Lions Club, etc.) to provide it?
/___/ Go without?

____________________________________________________________________________

____________________________________________________________________________

____________________________________________________________________________

____________________________________________________________________________


If you could ask for something to help you get the assistive technology you
or your family member needs, what would you ask for?

____________________________________________________________________________

____________________________________________________________________________

____________________________________________________________________________


May we phone you for more details? Phone
#______________________________Voice or TTY
Best time to call___________________
Optional: Congress is especially interested in learning if any groups face
additional barriers in accessing AT. For statistical purposes only, are you
or your family member with a disability:  /_/ African American, /_/ Asian
American, /_/ Caucasian, /_/ Hispanic American, /_/ Native American,  /_/
other __________; 
/_/ low income; /_/ rural, /_/ inner city, /_/ over 65?

Thank you for your help. Your story may help Congress improve policies and
get assistive technology more easily to the people who need it.

___________________________________
Barriers to Accessing Assistive Technology

I.  Knowledge

I don't know that I don't know.  "I just must live with the effects of my
disability, nothing can help,"or "I don't have a disability I'm just
getting  older."

I don't know what works best-assume the old way is the only way.  "Hearing
aids don't work well in large auditoriums so I'm out of luck in attending
large conferences."

My doctor (therapist, audiologist, counselor, independent living
specialist, and medical equipment retailer) doesn't know of anything that
will help-I trust her completely  "If she doesn't know about it, it doesn't
exist"

I can't find anyone knowledgeable about cognitive impairments; they only
understand physical problems.

I don't know where to get help in evaluating my needs or trying out and
comparing devices "I tried a hearing aid once--those don't work for me."

II.  Funding

I can't afford it

 I can't even afford the evaluation to find out what would work best for my
child or myself.

My family insurance (private or public including Medicare or Medicaid)
won't pay for either evaluation or devices.  The benefits clearly don't
match my needs or those of my family member.

Medicare only pays for yesterday's technology, not the newest, best
performing devices.

No other sources of payment exist-private charity, state or federal
program, employer, and school.

 My child's school says my insurance must pay, my insurance says the school
must pay.  In the meantime my child has nothing.

Government says technology must be provided but doesn't fund their mandates.

III.  Rights and Policy

My child's school doesn't provide it.

 My insurance company won't provide it-they only provide wheelchairs not
hearing aids and communications aids.  Plus they won't provide other
equipment for use in my home.

My employer won't provide it-"If I can't do the same job duties, the same
way as all other employees, I won't have a job."

 State agencies won't provide it and won't work together-"I can't go to the
State University because they teach undergraduate classes in big
auditoriums.  They won't provide real-time captioning, saying Voc.
Rehabilitation must provide it, but VR won't provide it saying the
University is responsible."

Federal employers don't provide it-" I don't have civil rights, I'm a
civilian working for the military.  Unless the program primarily serves
people with disabilities, the government doesn't abide by the same rules as
 private businesses do."

So what if I have rights, no one will enforce them, plus rights are
interpreted differently in different states.  No one is accountable and no
one coordinates the system.

IV.  Progress

I could use my old washing machine, microwave, dishwasher and stove by
feeling the position of the pointers as I turned the dials.  But these new
touch panels have no reference point for blind users.

I used to love the Internet when it was a purely visual medium, but now
many sites have audio components that I can't access without captioning.
Why does everything new have to create new problems?

The assistive technology market is so specialized and small, there is not
enough profit so no one tries to meet my needs. 

_________________________________________
This information is brought to you by
The National Parent Network on Disabilities
1130 17th Street, N.W.    Suite 400
Washington, DC  20036
(202) 463-2299   (202) 463-9403 (fax)
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