Subj: Parents Connected (long)

[Guest guest]

I just returned home to find this in my mailbox.

Kay

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

American Society for Deaf Children

P.O. Box 1510, Olney, MD 20830-1510

301/570-6800 Business, 301/570-6665 Fax

800/942-ASDC Parent Information and Referral

To: Parents Connected

From: Barbara Raimondo

Re: Report on Assistive Technology Barriers, Hearing on Corey H. in

Chicago

REPORT ON ASSISTIVE TECHNOLOGY BARRIERS

Below is a survey ASDC has been asked to disseminate regarding barriers

parents face in obtaining assistive technology, such as hearing aids or

FM systems, for their children. It is put out by the National Parent

Network on Disabilities. If this is an area of concern to you, please

take a moment to complete the survey and return it to the National Parent

Network on Disabilities at npnd@... or by fax 617/847-1593. If you

have questions, please send them to the Parent Network on Disabilities.

Thank you.

***

As a part of the Assistive Technology Act, the National Council on

Disability is required to submit to Congress a report on assistive tech

policy barriers. The Association of Tech Act Projects (ATAP) has asked

the

National Parent Network on Disabilities 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@..., or by fax:

.

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

(fax)

npnd@... / www.npnd.org

HEARING ON COREY H. IN CHICAGO

On September 27, from six to eight o'clock, there will be a hearing in

Chicago on the Corey H. decision. Parents are encouraged to attend.

Corey H. is a child whose parents sued to have him educated in the least

restrictive environment. This case has resulted in numerous changes

taking place in the Illinois school system. The hearing will be held at

Lane Tech, 2501 West . For more information, call the Chicago

Public Schools at 773/553-1800.

Barbara Raimondo

301/990-2847 v/tty

301/990-2848 fax

BarbR500@... e-mail