This area of WACMA was designed to assist those seeking disability aides. As more material is added, we will categorise the data into seperate sections such as federal disability programs, insurance forms, etc.
We want to list any and all information that can help those suffering from ACM find the resources they need and to which they are entitled. If you can contribute in any way, please contact R. Watt or C. Vierow.
Thank you.

update: june 10, '99 (back to acm info) ============================================

Hi guys,

I haven't been following all the messages lately, but did catch some
about 504 plans.  That is a national (US) program that schools are
required to offer to students with disabilities.  I'm sure most of the
kids I've read about on this list would qualify.  It allows special
accomodations within the regular classroom.  For example, my son who is
bipolar has one.  His states that if he becomes overly energetic or hard
to control in class he is to be sent to the counselours office.  Ie he
is not to be punished for his disability.

The 504s can allow many accomodations.  These could be a second set of
books to be kept at home, longer times to take a test, quiet places to
take a test....   A parent, or teacher can request a 504 be developed
for your child.  Each school is required to have a "504 point person"
that is in charge.  All schools are required by law to provide this, but
some will make the process take forever.  The 504 meeting will have the
504 point person (ours is our counselor) the classroom teacher, a
diagnostician, and a parent must be invited.  At that meeting you state
why you feel your child needs special help, and exactly what you would
like them to have.  The school representatives may offer different
ideas, or may tell you why your idea doesnt work.  Be sure you stand
your ground.   Take another adult with you, that knows your child, and
ideally also knows about 504 plans.  The school writes it up, and sends
you a copy.  Once you get a 504 in place the school must follow it or
they are breaking the law.

504s are great, but they don't provide as much support as an IEP
(individual education plan) under special education.  Seems to me most
of the ACM kids would qualify under OHI (other health impaired,)  to get
more services, if they are having trouble keeping up in school.  There
has to be "educational need" for this.   If you feel your child needs
more help than a 504 will provide, ask for an ARD (admission, review and
dismissal) meeting.  The schools have to accomodate this and hold the
meeting within some short time frame.  (sorry don't remember.)  You will
be notified of the time of the meeting.  The attendees will be much the
same as for the 504 meeting, but for sure someone from special ed will
be present.  This meeting will determine if your child needs special
education.  Be prepared!  Tell them all the problems your child has with
normal school.  Ask for the changes you need.  One of the myths is that
kids in special ed have to go to a different classroom.  They don't!
Accomodations can be made in the regular classrooms.

I'm learning about all this currently.  We have our first ARD scheduled
for Monday.  I've been given lots of paperwork telling me exactly what
my legal rights are.   The best information I've seen is a small book
titled:

 Educational rights of Children with Disabilities:  A Primer for
Advocates
 by Eileen L. Ordover and Kathleen B. Boundy
 
 

Mine was given to me by a support group AMI CAN (support for mentally
ill kids' families,) but the book is general in nature.  it says for
ordering information contact

 the Center for Law and Education
 955 Massachusetts Ave
 Cambridge, Massachusetts  02139

The book explains many parts of the laws that created and support 504s
and IEPs.  I highly recommend it to anyone who's child needs extra help
in school, and needs to know what their choices are, especially if the
schools are not particularly forthcoming with the information.

Sarah t
===========================

Just wanted to write a note that may answer some questions in the area of
Special Education, and 504 (ADA) Modification Plans.  Hope that the following
is helpful to some of you that are dealing with this now. I work as an
administrator in NH, but tried to keep to the Federal law in my descriptions.
 
What is the difference between a 504 plan and an IEP?

Children with an IEP (Individual Educational Plan), have an educational
disability that negatively impacts their ability to be educated.

Children with a 504 Modification Plan have/or are suspected of having, a
disability that may not be having a negative impact on their ability to be
educated, but for whom modifications are necessary in the educational
environment in order for them to access the services available to children
without disabilities.

Examples:

504 Plan:  An example of this might be a child who has ADHD.  This child
(fictional) is quite able to learn in the regular classroom, and typically
brings home C's on his/her report card.  When entering Jr. High this same
child begins to demonstrate difficulties that appear to be stemming from
his/her inability to organize the new schedule, changes in teachers, and
independence place on him/her.  The child's counselor may suggest that the
team leader for the, i.e. 7th grade, meet with the involved teachers and
devise a plan that will assist the child with organization skills.  The plan
may include such things as a homework assignment book that is initialed by the
home room teacher at the end of the day, after same has checked to see that
the student has all books and materials necessary to complete the assignments
for the day.  The parent will initial the book at the other end when the child
has completed the assignments.  It may also include a modification that
enables the child to go to a specific person when he/she has forgotten the
class schedule and lost the one that was given to them, (sound familiar
parents?), this person will keep copies of the schedule on hand for just such
an instance.  The child may be allowed to complete only portions of homework
or class assignments, or take breaks when working on lengthy assignments in
the classroom, may be allowed to take exams in a more secluded environment,
and other specific modifications as necessary.

IDEA - Special Education: Now, a similar example, a child with ADHD, who is in
the first or second grade, has a history of difficulties in school, and is
struggling to keep up with the classwork or to learn basic concepts.  This
child is demonstrating that he/she has a disability, and that it is having a
negative impact on his/her ability to be educated.  Two criteria for special
education services.  The Sped Team (including the parents) will want to take a
look at whether they feel the child requires special education services.  If
the Sped Team feels that the answer to that question is yes, then they may
identify the child as having an educational disability and develop an IEP for
the child.  The IEP will be different from a 504 plan, in that along with
modifications that the child requires for optional function in the classroom,
it will also include specific educational goals, and the methods that will be
incorporated in measuring progress.  For example an educational goal for a 1st
grade child may be that they will learn to identify all letters of the
alphabet, and will demonstrate this knowledge by responding verbally with the
correct name for that letter when pointed to, 90% of the time.

I hope that this will help with the question "what does my child need? an IEP
or a 504 Plan."

Terri in NH
========================

I Coresponded  with the News this week, hope to hear back today!!!!, the other
thing is I want to share this with all of you, I just signed on this morning
for a program my mother is on in Arizona, it is run out of Arizona but can be
done anywhere, including Canada, it is a program called " AWAIR" the company
is to make Medical people (Police, Firestation,911), all alert to your
disorder, allergies, med's, everything about your illness, and a Vile is
placed inside your refrigerator with all the info, all these people know to
look for it in the refrigerator becasue you place a sticker outside your door,
on the vile, and on your phone, it is FREE!!, thye are senidng mine out today,
once I fill it out and put the stickers out from then on I will not have to
explain if an emergency arrises, anyways I think this is a very very useful
tool for those of you who have say severe swallowing, breathing, anything that
might require 911, seizures, ect.....   Thanks everyone for the nice posts,
have a beautiful day, I m off to buy my daughter a skating gift for her Show.

Here is the number for AWAIR Medical Company, (602-303-9998),  Peace

Dawn
================================

from Sarah in Paradise:

Assistive Technology for the Disabled
================================

For those of you who's kids are getting close to college, we have been
speaking to a number of them lately and ALL have said "be sure to get
the 504 while in high school".  Apparently it's much more difficult to
get it after you are "out in the real world".  And be sure it's written
to allow changes.  Many of the things needed to help in elementry and
high school will change with college.  The counslor at the colleges have
given us great ideas for what can be included bassed on what her long
term goals are (graphic design).

The only thing "negitive" I have heard is that some educators believe
that some kids may "abuse" the privleges and develope a "crutch" to get
out of homework.  I believe that it's the parents responsibility to
assure that doesn't happen.

==========================================

their is a program with Human Services in the USA for disabled
Children & Adults that dont qualify for Social Security. Because of their
income being to high! It is called "ILL & HANDYCAP WAVER"  Another place to Ck
for any help you can recieve is if you have a Visiting Nurse assoc. can help
you getin tough with " UP WITH FAMILYS" they are parents with handycaped
children. they know a lot of help to find..   Elaine Mom to Erica ACM1& SM
2yrs decompressed 6/97
==========================================

Just a note about the Medicaid waivers -- I have found that they vary from
state to state.  I have a friend in Alabama whose daughter is on the Waiver
program & form the sound of it they had no problem GETTING the waiver; in a
waiting room a couple weeks ago I talked to a mom who moved here (Utah) from
Colorado & she told me that her son had the waiver in Colorado (got it with no
waiting or any difficulties); here in UTAH, though there is a waiting list for
the waiver (& services from the gov't agency Services for People with
Disabilities) that some people have been on for as long as 8 years!!  Nina is
on this waiting list because SSI just doesn't pay enough to keep us going
(financially) and I need to find a job I can do at home (but if I get one now,
we lose the SSI AND the Medicaid, so I have to wait).  I discovered that Nina
is #44 on the "critical list" (need-wise) out of 169 on that list -- and there
are MANY others not on the critcal list.  The Medicaid Waiver Programs are
funded partly by the state legislature and partly by the feds -- but the
funding this year only covers about 20% of the list (so we don't know yet if
we will get it -- will find out in August most likely).  The GOOD thing about
the Waiver is that once you get it, they cannot take the Medicaid away (unlike
when you get it along with SSI) -- it would just be nice if they had a uniform
way of getting it and NO waiting list!
=======================================

Tefra medicaid.
This program is for children who meet disability but their parents make too
much money.  She is approved all the way back to Feb. 97 and they will not
review her case again until April 1999.  This means $0 out of pocket for us,
as this will supplement what our private ins. does not pay.  She had to be
determined disabled by Voc Rehab, and I have the section that they determined
her disabled on if that will help?  By the way, if we were not over on income,
she would also get SSI automatically since voc rehad does the disability
assessments for them too, in South Carolina.

Billie JO
========================================

I just got approved for SSI on my second appeal.  SSI is different than SSA
from working.  SSI is like the federal gov. equivalent to Welfare.  I sent
all my med. records as well as all the info I could gather on ACM/SM.  I
also had a psych. eval and he agreed that my pain level precluded me from
work as well as putting me in psychological danger from depression due to my
condition.  I know that is what clinched it for me.  I haven't worked for 18
years now having been an at home mom.  I didn't qualify for SSA and can't
get medi-care because of my age.  You should ask them about this.  I
understand not getting SSA having worked at home because you probably did
not contribute to SS but you should qualify for SSI.  When I get my paper
work I will send it to you to use as a precedent for qualifying.  Hope this
helps.
=========================================

Disability Rights
=========================================

Learning Disabilities Resources
========================================

call the Human Services / the same place you would for Food Stamps or
Welfare office in your Town or State. It is a National Waver!! So all states
should have it. It cover almost like Title 19 insurance but dosent pay for a
nurse but it will pay for Respit care,&  like insurances would pay! also call
Keystone or your School districs & ask for the handcaped education area & the
government has started a new program for parents with handycaped children, For
respit care funding
==========================================

"Americans with Disabilities ACT Document Center"
==========================================

Government Resources
==========================================

Is your daughter on Disability?  If not, she still may be able to get
services from the State Rehab in your area.  They can test her, help her
decide what she wants to do, pay for equipment she may need.  When I was
going to school, they bought me a drafting desk and a chair (that cost
over $600.00).  They even help by paying for college.  Something to look
in to.  Did you say she had a learning disability?  I hope this helps.
===========================================
  Here is a site that has tons of information. It is geared to Federal Employees but has links to many state sites as well. Hope this helps with anyone who is trying to get info on workers comp and how to get a claim approved. the site is called FedUp ======================================================
Social Security online =======================================================
A virtual cornicopia of disability links! =======================================================
Utah disability class action law suit
=======================================================
Was just reading the web page about disability information. Just though I'd tell about what Heather receives if you wanted to add it to the page. She does not qualify for SSI because of income, but she does have Medicaid. She got it under the Katy Beckett waiver. This waiver has no stipulations on your income. It is totally based on medical need. You have to first be denied SSI. The Katy Beckett waiver was obviously named after a young girl named Katy Beckett. I believe her family actually had insurance, but also had enormous medical bills. This waiver grants Medicaid benefits to disabled children whose families are in-eligible for SSI and whose homecare costs are lower than the cost of institutionalized care (nursing homes, etc.). Medicaid is Heather's only type of insurance. This is not a waiver that you normally hear about - you have to ask about it. I went through our Department of Family and Children Services. Many times it can take several months to get approved. We were lucky. Heather was approved within two months. It has paid for all her medical care and 6 prescriptions a month. It also pays for her Ensure with is her main source of nutrition. This we had to get prior approval for. We have not run into any problems with her medicaid so far and she has had it for several years now. Periodically, we have to be re-updated to see if she still qualifies. Unfortunately or fortunately, she will always qualify. Her disibilities aren't going to go away. The only thing that I am unsure of is what happens when she turns either 18 or 21. At the time we applied for it, the waiver was being recognized by many states. After you find out if this waiver is recognized in your state, your first step would be to apply for SSI and get a written statement of denial. Then you need to contact your local Dept. of Family and Childrens Services. And they should be able to help you from there.
====================================================
For anyone else that is interested there are sponsors out there that can help with educational expenses for people with all sort of disabilities. for beginners you need to go to your local Vocational Rehabilitation Office. One place that the college I was going to gave me this place that goes through Annie Mae called fastweb. June
======================================================
Hi, I would like to relate how important the 504s really are. When my son (17) was in seventh grade he was hit by a car. That was our first experience with the 504. After much pressure and meetings with the school we were able to get him home tutoring, transportation, and a wheel chair at school. Later when he was diagnosed with chiari we have used the 504 for home tutoring, a laptop, and transportation to and from the school. I would strongly suggest you continue with the 504. He also would go to the nurses office to rest etc. He is unable to go to school right now but we continue to try to do the homebound stuff. If we did not have the 504 in place the school can not do anything to help him. I wish you good luck.
=======================================================
A note from a lawyer friend of Pam's concerning a Chiarian:

If this girl goes to work she automatically disqualifies
herself
>for disability. They run under the "if you are really disabled then you
>can't work so if you're working you must not be disabled" catch. What
>usually happens in these situations is that she'll work for a very short
>period of time - her symptoms will worsen/return and she'll have to start
>missing work. Eventually, they will grow tired of her missing work and
fire
>her or force her to quit. It goes around in a vicious circle.
>
>All of "your people" need to know that SSA is going to turn them down the
>first time they file NO MATTER WHAT. Then they'll turn them down the
second
>time NO MATTER WHAT. The third time they will be applying for a hearing
>before an Administrative Law Judge - which hearing they will most likely
get
>- and THAT is their best chance. Giving up after being denied twice is not
>the answer. That's only when you're getting somewhere.
>
>We need to continue to get you - as a Chiari patient - pigeon holed under a
>few other "listings of impairments" that are recognized by the SSA and see
if
>we can't get your benefits that way.
>
>See if you can pass this along to your on-line friends. I do not want to
>give anyone false hope! What I'm saying is - don't give up. We're trying
>another angle. I'm curious how many of these people are filing on their
own
>and how many have attorney's experienced with SSA cases representing them.
===================================
Here is a web site that may be helpful regarding Social Security Disability. Hope it helps.
NOSSCR Online
Judy R.
==================================