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Tuesday, March 24, 2009


Yesterday I received a call from Kristin Stern in the Tacoma office of the Social Security Administration. It seemed that Patty Murray’s inquiry into my situation of needing to re-qualify my daughter who has Down’s Syndrome had reached her desk. She was very nice. Nicer than anyone I have ever had to deal with at the SSA. To recap our problem, my nearly 38 year old daughter has Down’s Syndrome, something that doesn’t magically go away. In 1987 I spent seven months without her benefits while attempting to prove to the SSA she’d not undergone a miracle. When I received papers early this month wanting to do it again I was smarter than in 1987. I contacted our congressional delegation and immediately heard back from Senator Patty Murray who sent a release form so her office to look into the matter. It seems to have been effective.

Allegedly the purpose of this re-evaluation was to make sure Amy hasn’t been working which would affect the amount of her SSI or end it altogether. In 1987 my daughter was 16 so I’ve no idea what their excuse was then. To be fair, that was the Astoria Oregon office of the SSA. “Exactly how much would my daughter [who has not worked in over 10 years] have to make to end her benefits,” I asked Ms. Stern. “$875 per month,” she replied. I laughed. The most Amy was ever able to work as nine minimum wage hours per week. “I’d love to know how many people with Down’s Syndrome make that much per month, but the bottom line is that Down’s Syndrome doesn’t get better. If you want to check up and make sure she’s still alive, since people with Down’s Syndrome have a shorter life expectancy, I don’t have a problem. Just don’t make me keep proving she’s disabled.” Ms. Stern replied that the worker who is processing Amy’s file is going to code it so that we will not be doing this again in the future. I cannot help but feel that had Senator Murray’s office not contacted the SSA we would have been doing this again in three years. Families with a loved one who has a congenital disability ought not to have to keep proving that the individual is still disabled.

If you take anything away from our experience let it be this, ask for help. Be a good self-advocate especially if you have an offspring or family member with a disability. I wish I would have sat down with a piece of notebook paper (because that was all I had back then) and written to our congressional delegation back in 1987. It might have made a big difference in the life of my family. PAVE in Tacoma is another good resource for finding out your rights and responsibilities. When you run into a bump in the road, don’t just think that’s how the system works. It may be that the system needs fixing or that there’s a way around it. Now I must get busy writing Sen. Murray a nice thank you note.


Lorraine Hart said...

Make sure you send her the links to your posts too Stephanie. I'm so glad this matter has been resolved for you...there's enough stress already!

It's true, you know, many people are easily stopped at the bureaucratic door and don't work the system. It takes staying power...and that's something loving mothers know a lot about. Kudos for how hard you're always working, my friend. Lox

Kim Thompson said...

Oh this is WONDERFUL news. I am in a similar boat and I continue to learn from you Stephanie. Thanks for reporting this!

Stephanie Frieze said...

Thank you, ladies. I hope that other families won't have to continually prove their loved one is disabled, but my best advice is to seek help from our lawmakers, especially Patty Murray who has my undying esteem.

Jaynie Jones said...

Way to go, Patty! I rejoice with you, Stephanie, that someone, somewhere cared and intervened. What a relief!!!