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.

Tuesday, May 12, 2009

Chips Ahoy for Breakfast? ~ SSI Granted!!!

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?
Sarah: No

Psych: Do you take a bus?
Sarah: Yes

Psych: Do you know the bus number
Sarah: 6

(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?
Sarah: silence

Psych: Sarah, can you count to 10?
Sarah, 3,4,5,6,7,8,9,10

(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?
Sarah: Yes

Psych: What do you have?
Sarah: cookies

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:

I quickly scanned the document searching for the word and then I see it...APPROVED

... for the maximum monthly payment of $674.00...Hurray... Thank you Chips Ahoy!!


Mandy said...

Sounds like our family withe being denied any services because of income - we have been told NOT to start a savings account or put our boys' (with ds) names in our will as beneficiaries due to future eligibility with SSI. I had shrugged it off until this and now I think I see why that is - they would take away the payment huh?
We did go with the will suggestion and have told our families why that is and that we hope and pray we are raising our older 3 kids right (that they will divide it up evenly if and when that time comes).
Gosh I have a lot of learning to do!!! Keep teaching me PLEASE!!!! LOL
BTW - cookies are awesome :)

Beverly said...

Too funny! I am so happy Sarah was approved!!!! I hate dealing with SS office!

Ruby's Mom said...

I'm so glad for you that Sarah will keep getting her SSI,and getting the maximum!I applied for SSI for Ruby when we brought her home from the NICU when she was 2 weeks old.Because we have a large family she qualified for the maximum amount and we started getting the check the next month.She also started getting traditional medicaid because she gets SSI.I have been so thankful to receive these for her because it has helped tremendously!I use our personal insurance but all those co-pays would surely have broken us by know without the medicaid.

Anonymous said...

I love to read about Sarah. She inspires me so much. She also makes me realize that one day, my Carly (Ds 1/2/02) can/will be at this very place in her life. I look forward to reading more about Sarah. Oh,the cookie response from Sarah to the Physch., was a hoot. I can just imagine the kick you got out of that!

Also, happy for you regarding the SSI benefits for Sarah. We inquired for our Carly a couple of years ago, but were told we do not qualify. They said my husband (our sole provider) makes too much....hmmmmm, yet we live from paycheck to paycheck. Go figure!


Anonymous said...

Thanks so much for popping by. Funny, my husband and I were just talking about needing to see what was available for our Sawyer (4 years old) when he got older. (housing, jobs, etc)

He, too, was not expected to live. (pulmonary hypertension and heart defect) He showed them and continues to show them.

So I have bookmarked your blog and will follow to see how Sarah does. Thanks for the SSI tip. Apparently, Sawyer cannot qualify for a waiver either. (not 2 deviations from the mean on enough tests. I guess they want to wait til he's very far behind before they help him)

We love learning from those who have been there and done that.

(Mom to Sawyer, Turner, Ansley, and Judson)

Lora Leigh said...

That is great that she qualified for SSI! I hate dealing with SS. They have taken Raeleigh's SSI twice and we have had to hire a lawyer to get it back each time. They are very unfair in the way they do things and half the time they don't pay attention to anything.

Love the cookies for breakfast comment! LOL

sturpin said...

oh Joyce! I love how you write, how you drag us into the emotions, how I was sweating with you on the chair.
I am glad that Sarah got her SSI - what a relief!

I am so glad that you are going to share with us what you have learned. Thank you in advance!

Perplexing Situation said...

Thank you for the great information! We recently applied for Marissa and were turned down because we were slightly over the approved income level. We will absolutely be applying if we have another baby or when Marissa turns 18. Until then, maybe Marissa will get cookies for breakfast too. hehe

Beth said...

That is a great story!

In our house, popcorn is a favorite breakfast food--I figure it's exactly the same thing as corn flakes, just in a different shape.

Hooray for Sarah, and hooray for the budget!

Lisa said...

YEA!! I know how tough it is to get approved for SSI now that I am working with families facing this issue. I am really looking forward to your next few posts because a lot of the girls I work with have Turner Syndrome and face a lot of similar challenges as kids with DS. I do also want to say that BCMH has changed their criteria a lot in the past few years, especially in regards to income, so if you live in Ohio and were denied in the past, you might want to try again. I have had a lot of success getting families on it lately.

stephanie said...

Well, thanks for the tips.By the time Emmie is as old as Sarah I'll know all the tricks.So glad Sarah qualified.And there is nothing wrong with cookies for breakfast.

stephanie said...
This comment has been removed by the author.
stephanie said...
This comment has been removed by the author.
stephanie said...

Those two deleted comments are me, I posted three times, don't ask.

Tricia said...

ha of course she has cookies for breakfast!! I wonder what he has????

Thanks so much for sharing...

Tsquared417 said...

I love how you want her to answer correctly, but you don't. That's exactly how I feel sometimes!! And I would totally think the cookies were a reflection on me! :)

datri said...

I'll never understand how different states (and apparently in Ohio, different counties) do the waiver process. In NY, there's currently no wait list for the Medicaid waiver, but we had to be denied SSI first. So I went into the office telling them we needed to be denied and listed all our assets. It's nuts.

Carol N. said...

Well done, Joyce and Sarah - jumping hoops is never easy.

JennyH said...

Cookies for breakfast sounds good to me!

I love reading this blog. You guys have tons of useful info and even more cute pictures!

Lisa said...

What a story! I'm so happy it all worked out.

I just recently started the application process for SSI for Finn. I have a phone interview with SS scheduled next week. I'm dreading it. I suspect we'll be denied. We'll see.

Tricia said...

Great post! So glad for the approval!

Cheri said... had me cracking me up! I love how you shared this story and the thought process you went through as the evaluation was being conducted! So glad Sarah was approved and thank you for posting this...I love learning about the road ahead from another mom...especially when it is from you and Sarah! :)

Karen said...

Micah gets SSI, but my husband's income is right at the line. The unfortunate thing is that when he makes $100 over, we lose about $400 of the SSI. It isn't dollar for dollar.

SunflowerMom said...

SS is a nightmare! Count me in the "I hate dealing with them" club. We are so happy that Sean is able to get it and the Medicade that comes with it in our state.

I loved your story about going to the Pshycologist! Yay for cookies!

Sumithra said...

Thanks for stopping by my blog and leaving your comments. Sarah is such an inspiration. Thanks to you and Sarah for your wonderful blogs. It fills me with immense hope for my son's future.

Shawndi84 said...

That is so awesome! SSI is a PAIN isn't it. A'Reian used to recieve benefits and then we got a letter saying they made a mistake and we owe them $4,500.00 CRAZY!!
I have missed reading your blog... I am really going to keep updated from now on! :)