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

[Guest guest]

Excellent, Rebekah! I, too, went to the change.gov site and expressed

my concerns on Consistent Pro-Life issues. Our president-elect listens

and has devoted his life to public service when he could have been a

very wealthy Wall-Street attorney. He listens. Everyone should take

advantage of this and express what concerns them.

granny

On Wed, Dec 24, 2008 at 10:30 AM, fourgivenfish <fourgivenfish@...> wrote:

> 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

>

>

>

--

Not for ourselves but for the whole world we were born

[Guest guest]

I went to change.gov and recommended something be done with the SSI program so

that families are kept on the brink of poverty to keep from losing the benefits

since they can't work enough hours to make up the difference especially in those

3 paycheck months.

Cari

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