A Little Good News

To piggyback on Kim’s good news post I would like to give a little update on my struggle with the Social Security Administration. Right after I put up that post I emailed our entire Congressional Delegation asking that Congress look into the SSA’s policy of asking families to re-qualify disabled loved ones who have conditions for which there is no hope of recovery. Although I only heard back from one, the response was immediate. I emailed on a Thursday and by Saturday I had a letter from Senator Patty Murray asking me to sign a release form so that her office could look into the matter. I was blown away by the quick turnaround.

Needless to say, my response was quick as well. I filled out the release form which both my daughter and I signed and sent all the particulars regarding our experience with the SSA and my daughter’s Down’s Syndrome. I sent the envelope certified mail. Now I have received another letter from Patty Murray saying that they are looking into the matter and giving me the name and number of a contact in her Seattle office if I have more problems. I’m impressed.

I sent the SSA all the information I had at hand that proved that my daughter had not “recovered” from her Down’s Syndrome and heard nothing back from them. I’d like to assume that this has put the matter to rest for a while, but I am still nervous when I go to the PO Box. What I hope is that Murray’s inquiry into the matter will shed some light on a flaw in the SSA system so that other families will not have to repeatedly prove that their loved one has not been the recipient of a miracle. It’s nice to know that Patty Murray is responsive to the concerns of her constituents and she really has made me feel less alone than I did in 1987 when it took them seven months to figure it out.

Dear Social Security Administration

United States Social Security Administration

4 March 2009

To Whom It May Concern:

I received your request for information regarding my daughter’s disability. I am pleased to see that the government is being vigilant against fraud and waste and as a taxpayer I appreciate your efforts. That said, it would seem that in these days of computers there must be some way that the parents of offspring with genetic disabilities from birth would not be required to repeatedly prove that no miracle has happened, no advancement of medicine has wiped away mental retardation and physical limitations, that our children are still not whole.

My daughter was born on April 15th 1971 at Overlake Hospital in Bellevue, Washington. When she was six days old she was diagnosed with Down’s Syndrome, a genetic anomaly whereby in every cell of her body she carries an extra chromosome on the 21st pair leaving her short in stature, bearing certain facial characteristics, and mentally retarded. Of course I prayed for a miracle that somehow the University of Washington had got it wrong, but I have come to accept that I will not wake up to a "normal" daughter as long as we are both alive. Do you not think that I would have liked for her to complete college, have a profession, fall in love, marry and give me grandchildren? If I can accept the permanence of her disability I should think that the Government of the United States could as well.

In 1987, in its wisdom your department withheld my daughter’s SSI for seven months while it was determined if she still had Down’s Syndrome. At the same time I was laid off from my job, her father neglected to pay child support and I went through all of my meager savings to keep my children’s bodies and souls together before a psychologist was found to test my daughter. On the day we arrived for her to be tested the psychologist took one look at my daughter and said, “They didn’t tell me she had Down’s Syndrome.” How can that be? How can it not appear in your records that my daughter has a disability for which there is no hope of recovery? Surely you need a new method of record keeping for there must be a record of that psychologist’s findings. I know for a fact that a Social Security employee made a Xerox of her ID card for her file only a few years ago in the hope that this would not happen again.

I am sending you information from my daughter’s DDD case manager regarding her plan of care and a letter from the Peninsula School District verifying her disability. I am also attaching a current copy of her WA. St. ID. If you require me to bring her to your office so you can see for yourselves, I will do it.

While you may be attempting to ferret out fraud perpetrated by injured people who are now well, you are spending man-hours and taxpayer money attempting to verify something that was verified decades ago. There must be a better way that will save your office time and money and save parents and families frustration.

Sincerely,
Stephanie K. Frieze