My letter to www.change.gov (I encourage U all to write)

[Guest guest]

President-elect Obama & Vice President-elect Biden,

I hope that you have received many other letters like mine with

regards to the Social Security system involved with children with

special needs. I wanted to write and give my .02 cents. You need to

know what is happening every day for those of us who have children

with mild/moderate/severe special needs.

In case you are unaware how the systems are tied together, I

want to give you an overview as to how our children receive services

in the 50 states, as I know it to be. I will use our daughter and

our situation to explain to you how it works. Our daughter, ,

is 9 years old and has a dual diagnosis of Down syndrome and Cerebral

Palsy. She receives Medicaid because she is eligible for SSI

(Supplemental Security Income). It is tied in to one anther and is

all based on our income as her parents. With all of her care, there

is no way I could work a full time job and take care of her doctor's

appointments and therapies. Her Dad is the only one in our household

who works. He makes about $36,000 before taxes per year working for

the Dept of Homeland Security. We are grateful that she can get

Medicaid. We use it as a wrap around to our private insurance that

we pay out-of-pocket for.

Here's where the problems come in. Anytime there are 3 pay days

in a month we are promptly cut off of SSI and therefore become

ineligible for Medicaid. The money that it would take for us to

survive (those months that we don't receive Medicaid) would not be

enough to sustain us. You see, we pay approximately $320 for private

insurance. Private insurance through Federal BCBS does not cover

everything needed for our daughter. This is why we rely heavily on

Medicaid.

Another problem that arrises is the need for the waiting lists

for waivered services to be cleared. Each state has lists for

children to receive the waivered services. For instance, in Oklahoma

where we just moved from, the waiting list is 4 years long. Here in

Colorado, it is approximately 2 years long. These waivers relieve

the burden of us parents who frequently go over income, but don't

make enough to sustain their families without the added benefit of

Medicaid. Since institutions are no longer an option for most of us

parents, we rely on Medicaid to help us carry the added stresses and

strains of raising a child with special needs. I am sure that it

would cost the government far more to open up institutions and put

individuals in there who have no other options. In my opinion,

institutions of this kind are outdated for this day in time and

inhumane.

In closing, I would ask that you please please talk with us

parents who deal with these types of issues day in and day out. I

ask that you form a committee. I'd be happy to serve from afar and

give my feedback as to how to effectively change the system for the

betterment of all individuals with disabilities. Without a thorough

overhaul of the systems of SSI & Medicaid, parents like my husband

and I will continue to face life month by month without any relief.

We are proud of our daughter with disabillities and would not trade

her for the world. However, we need your administration to step up

to the plate and have a positive inpact on change in this area of our

governmental systems. I have left my name, phone number, mailing

address and email for your information. Please do not hesitate to

contact me. I feel as if the Lord has called me to this service for

my child and others.

God Bless you in the coming year and your new life as our leaders!

Sincerely,

Rebekah E. Fish

proud Mom to Fish and Jo Fish