NORD Conference - Part 2

[Guest guest]

Here's some more information that I learned:

The NIHCD (National Institute of Health - Child Development) has a

division that deal with rehabilitation issues of children. In the past

NIH has focused spending their money on research, but there have

been many requests for help with treatment. Anyone with children

with a myopathy, encephalopathy, hypotonic issues, CP ect will

qualify for help. They will help fund therapy as well as

getting assistive devices. Soon they will have this on the NIH web

site and are going to try and become very visable and reachable.

The NIH has developed an interest in behavior changes with

children that have learning disabilities. They have discovered that

hormonal influences substantially effect the nervous system

function. They are conducting research now looking into

adolescent behaviors and nervous system functioning.

We also learned about the Human Gene Transfer Information

Systems (HGTIS). You can go to www.genetests.org to find out

more information. They provide a list of organizations and labs that

do genetic screening.

The orphan drug act of 1983 was created to protect individuals with

rare disorders. As we all know, pharmacutical companies want

little to do with drugs that won't bring them big bucks. This was

created to give special tax incentives for the pharmacutical

companies to take the study/production of these drugs. When

someone asked about COQ10 we learned they aren't

going to approve CoQ 10 because it can be purchased over the

counter. That was disappointing.

We learned alot about health insurance. Much of this was new

information to me. For instance; Did you know that everyone of us

should know where we are with our lifetime cap? The insurance

company will let you know this information and we should all be

keeping track of that. We learned about Cobra and Hippa. There

is an organization called ACCESS which advocates for those

needing health insurance. The number is 1- (9-5

eastern). They will answer questions about insurance coverage,

SSI, cobra, etc for no charge.

I attended a class by Doug Vogal from the SNAP (Special

Needs Advocate for Parents) organization. Boy did I learn alot

here. He taught us about wills vs trusts. They have a web site set

up at www.snapinfo.org This site is to help parents with children

who have special needs. The web site has a newsletter, archives,

BB, legal issues, medical issues, diagnosed disorders vs

undiagnosed disorders. The SNAP organization provides medical

insurance advocacy.

They talked about the importance of having a " Letter of Intent " as

well as a will or trust. In this letter you would include every

instruction you can think of that you would want your children's

guardian to have. He suggested that you include such items as

info about the child's parents, what their child development has

been like, all the doctors your child sees, phone #'s of specialists,

diagnosis, special equipment, feelings about future living issues,

school issues (IEP), list doctors you do NOT ever want your child

to be taken to as well as doctors you want your child to see, what

does your child like to do, attachments (binky, blanket, etc),

medications and when you give them. He said to keep this on the

computer (because this may change over time) and print a hard

copy. Have it notarized and share it with the guardian and maybe

your parents. He said you want them to be able to ask you

questions while you are still around.

We learned that for school you want to involve as many people as

possible on your childs team. They gave a great handout on this.

It addresses all the issues you need to cover with your school

having a child with special needs. They suggested that progress

books are the best way to communcate back and forth between

teachers and parents. You can send the child in with a note that

says " Suzy didn't sleep well last night " or teacher may say "

was unable to focus during math today, seemed out of it " . Then

the home and school are working together more efficiently. She

reminded us that there are always teachers that just don't get it,

but we can keep doing out best to educate them.

I think that's enough for now