This is Joyce again. I was overwhelmed at the response we got to yesterday's post. I know many of our followers have young families for which the future is tomorrow, as it was for us for so many years. The truth is, for most of Sarah's early life we were happy with each additional day we had. Long term was making it to the weekend. Life planning was wondering if there was any possibility that she would survive for her 10th Birthday. Looking back, that "One Decade of Life" party was pretty spectacular. We invited everyone that had touched her life to thank them for helping her get that far. It also opened our eyes that maybe we should start thinking farther than the weekend.
Then Sarah got sick again. Really sick. The future went back to being one day at a time. Fast forward to about age 15 and Sarah was doing great. We went for months without a doctors visit, and I started to recognize that I better get busy and start learning about life as an adult. I attended every seminar and workshop directed to either parents or professionals that had anything to do with transition and/or adult services. Some of what I learned I wished I had known many years prior. So I am going to take the next few days to describe what I learned that might be a benefit for some of you reading. Please remember I am not a lawyer, so what I am writing is strictly mom to mom.
Over the years we have been told by social workers at the hospital to complete multiple applications for programs such as BCMH and Medicaid. However, we have never qualified for any government benefits. We were always "just above" the threshold, the 200% of poverty, the means testing. Whatever was used to rule folks out, did. In the early days we nearly lost our house, we sold our car, and I shopped at resale stores. We even opened multiple checking accounts at different banks to "float" money (I don't recommend doing this) to pay medical bills so they would continue to deliver needed supplies. But we managed.
So when I kept hearing at these seminars that upon Sarah's 18th Birthday we should file for SSI (Supplemental Security Income), I was skeptical. One major change though, at age 18 the assets of the family are no longer taken into consideration. Still, I procrastinated. When it became apparent back in December that I was going to have to leave my full time job, I started looking at our budget. We were still ok with daily living expenses, but some of the therapies that Sarah likes to do are expensive, such as therapeutic riding and music therapy. I talked to our support administrator at the county Board of MR/DD but there is no money available without a waiver and Sarah is on a LONG wait list for a waiver. So, that left SSI.
I started with the online application process. Sorry, SSI cannot be completed on line. So I called the phone number given. After being on hold for at least an hour, I was told that Down syndrome is on the presumptive list, meaning they will start payment the next month - SSI payments are not made the month of the application - they start the following month. but I needed to go to the nearest office with Sarah to make application. On December 28th, Sarah and I went. The appointment went smooth as can be. In January, the first payment arrived in Sarah's checking account. Too easy, I thought to myself.
Then a month later I started to get paperwork from the Ohio Rehabilitation Services Commission. This group verifies the disability in the state of Ohio for the Social Security Administration. I was warned by other families that this is not the time to write about all the things Sarah can do, but rather all the things she can not. It is the can nots that get you the approval. So that's exactly what I did. I wrote about her low IQ, that she cannot read a map and get around town on her own, she does not comprehend the value of money and she has difficulty determining how time correlates to where she is to be.
Smooth sailing. The direct deposits continued to appear the first of each month and I forgot that technically we were still being reviewed. Until the letter arrived in March that ordered Sarah to a psychiatrists office for a "mental evaluation." Ugh.
So off we go. The instruction letter said to allow up to 3 hours, so I went prepared with a book to read. The psychiatrist called me in first and told me that he would be asking Sarah questions to validate the information I had supplied in the paperwork. I left and Sarah went in. I sat in the chair closest to his door and once he started talking to Sarah I realized I could hear everything.
Here's how it went:
Psych: What is your name?
Sarah: Sarah Ely
Psych: Can you tell me your address?
Sarah: Sarah tells him perfectly
Psych: Sarah, when is your birthday?
Sarah: August 9, 1989
(I'm starting to get a little nervous here - she is doing too well)
Psych: Sarah, Do you drive?
Psych: Do you take a bus?
Psych: Do you know the bus number
(Now, I'm getting really nervous - hello - aren't you going to ask her what would happen if she got on the wrong bus? How much it costs to ride the bus...c'mon)
Psych: Sarah, Do you know what this is? (I'm not sure if he was using pictures or the real thing)
Sarah: A ball
Psych: Do you know what shape it is?
Sarah: A circle
(Now I'm starting to sweat a little - she is doing way too good)
Psych: Sarah, can you tell which one is the quarter?
Psych: Very good (I'm guessing she pointed to the quarter)
Psych: How much is it worth?
Sarah: silence (I'm starting to feel a little better)
Psych: Sarah, do you know how much this quarter is worth? What is it's value?
Psych: Sarah, can you count to 10?
(I'm not sure what happened to 1 and 2 but 3 to 10 was crystal clear and I'm sweating again)
Psych: Sarah, What time do you get up?
Sarah: When my mom comes in.
(Hmm...not sure if that's a good answer or a bad answer... and then...)
Psych: Sarah, Do you eat breakfast?
Psych: What do you have?
Psych: What kind of cookies, Sarah?
Sarah: Chocolate chip
Psych: OK Sarah, thanks for coming in. Then he opens the door and says to me, I will send the report in and you will hear something within 2-3 weeks. I don't make the decision but it looks like the paperwork is an accurate description of her ability.
Wait. Wait, wait, I wanted to yell. She does have chocolate chip cookies for breakfast. She does know what she is talking about. It all goes back to one morning in the hospital when she hadn't eaten for days and they wouldn't let us go home until she ate something, so I grabbed the first thing off the snack tray at the nurses station. Don't you want to ask her more questions?
Instead, I just smiled and said. "Thank you." And off we went, a short twenty minutes after our arrival.
As soon as I got home I went to the cupboard, looked at the package of Chips Ahoy, and just started laughing. Hysterically laughing, until I had tears rolling down my checks. I'm not even sure why. Maybe it was a release of sorts. Does this man really think that Sarah is so out of it she doesn't know what she has for breakfast? Or is the report going to say, "Mother incompetent, feeds daughter chocolate chip cookies for breakfast." Whatever, I just couldn't stop laughing.
And in the mail yesterday arrived this: