My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Wednesday, February 25, 2009

Check This Out ~ We're In!!!

I opened this email earlier. Hello, I was just wondering how Sarah was feeling. We are thinking about her and miss her here at work. Also, I wanted to share that she has been accepted into the summer work program for CCBMRDD. When you get a chance, please call me and we can discuss how the program works.

And I just got a phone call that they need a copy of her State ID, so it really might just happen.

I have not written to much about our lengthy ordeal with the Cuyahoga County Board of Mental Retardation and Developmental Disabilities(CCMRDD), mostly because my blood pressure rises just thinking about it, but more importantly because I don't want to discourage young families. The fact is: it has not been a pleasant experience.

When Sarah was approaching her 18th birthday, we started a strategic and detailed process for life planning. For an adult in the State of Ohio, that usually involves one of the 88 County Boards of Mental Retardation and Developmental Disabilities - they basically control all Medicaid Waiver monies, job placement programs, and assisted living arrangements. Sarah did receive services from birth to 3 from this entity, which was a fabulous experience. Then the school district took over until graduation. Then it is back to CCBMRDD.

I called intake thinking it would be a simple process. Not so. I completed all the paper work they mailed to us, supplied copies of IEPs, job skill evaluations, and report cards. We continued to get rejection letter, after rejection letter - Does not qualify for services. It was so frustrating. But you have to forge ahead. Talk to everyone you can. I even started going to the Board meetings downtown, to just try to figure the system out.

Finally I asked our school district to complete the entire battery of tests, PT, OT speech evaluations and an IQ test. For years, I had signed off on additional testing when it came time for the multi-factored evaluation renewal because Sarah does not perform well on tests and by the fifth grade we pretty much knew what services she needed, and her teachers had a good handle on her ability. This final time, as a Senior in High School, I needed all the tests completed, and I realized that for the first time I wanted the scores to be low, at least low enough that she qualifies for services.

We finally made it through the initial intake process, just so we could have an OEDI completed and then found out there is a waiting list. We have already been through three Support Administrators(new title for case managers) in less than two years, so to be approved for the summer work program is HUGE in my mind. I'm not even sure exactly what the program entails yet. I guess that it doesn't really matter - WE'RE IN!!!

We've had a few cheerleaders working on our behalf - thank you Sarah K. and Dan H. and anyone else who has been pushing things along. We appreciate your efforts.

5 comments:

Little Miss E said...

Woo hoo!! All that hard work finally paid off! Congrats!

Lacey said...

yeah for you. I hate it when they make everything so difficult.

Mel said...

Well done! It is great to see a mum who is working so hard fo her child. And just look at the results- amazing :) Both Sara and yourself are inspirations for the rest of us who are at the beginning of our journeys. Thank you.

Beverly said...

Great news! Let us know more about it when you find out more. Hope Sarah is feeling better!

Michelle said...

oh congratuluations!!