SSI Benefits and Down Syndrome
Are children with Down Syndrome automatically eligible for SSI benefits? Yes. Sort of. More or less.
I guess the Down Syndrome diagnosis made Gavin medically disabled, as far as Social Security was concerned; but to be eligible for SSI benefits checks, you also have to qualify financially - you have to have very low income to get money. We didn't qualify financially, because we made too much money (come to find out, just about ANY money you have is too much money - whether it is income or savings - as far as SSI is concerned.) Still, it was in Gavin's best interest for us to apply for SSI benefits on his behalf anyway. If we were going to be disqualified financially, you might reasonably ask, why would we persist in applying for benefits? Well...
The SSI benefits application process.
When Gavin was little, his caseworker from the Department of Developmental Disabilities in our state (Washington) told us that we could apply for SSI benefits through the Social Security Administration.
There were two basic sets of forms to fill out when we first applied for SSI benefits. The first was an application for SSI itself, which was only available at the Social Security office (or they could send it to us through the mail, I think - the point is, this one couldn't be filled out online), and the second was the Child Disability Report (pdf) (which can be filled out online if you prefer, or you can get the paper version from the SSA office or print it out online).
After we filled out and turned in the paperwork, the next step was a meeting at our local SSA office with our assigned caseworker who assured us that yes, he was definitely medically disabled. There was no question of that. But that's not all it takes to be eligible for SSI benefits! You also have to be financially eligible. More on that in a minute.
They were really nice to us. They took us back to a comfortable office and Gavin played on the floor while a nice caseworker and her trainee bent over backwards to be kind to us and help us answer any questions we'd missed on the form.
Then they explained to us exactly what SSI is, and how it differs from SSDI. Even though Gavin is technically disabled, he has never worked - so he's only eligible for SSI, not SSDI.
They were standing by with interpreters or whatever assistance we needed to get the forms filled out correctly and completely. It was really important to fill out every single box, as I remember, and the trainee caseworker did most of the work.
Now, you might ask yourself - if my child has Down Syndrome, why is it important for Social Security to know if he's having emotional or behavioral issues? (That's one of the questions on the form.) I don't know the answer to that, I'm afraid.
To be found "disabled" by SSA, the child must have "a medically determinable physical or mental impairment or impairments which result in marked and severe functional limitations". Down Syndrome could certainly bring with it those "marked and severe functional limitations", but not apparently, by definition - the SSA does not assume that Down Syndrome automatically means "marked and severe functional limitations". I'm actually pretty happy to see that.
You'll notice that Down Syndrome is not on the Compassionate Allowances List. From the SSA website: "Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information." Several medical issues that are commonly associated with Down Syndrome (childhood leukemia, for instance) are on the CAL - but not Down Syndrome itself.
The benefits outcome.
After that meeting, we waited for SSA to make a decision on Gavin's case, and that didn't take long. I think they came back with a decision in less than a month.
Gavin was found to be eligible, but our SSI benefits payment is ZERO because of our income. I don't know if it was worth it or not; I can't say what benefits we've received behind the scenes at different state or federal agencies, being able to access one budget or another because of eligibility for SSI. The inner workings of government are a complete mystery to me. But at any rate, I'm not sorry we applied for SSI. His leukemia treatment alone cost many thousands of dollars, covered by Medicaid, which SSI made him eligible for. If he gets no other benefit than that, then the (relatively painless) process was worth it.
I figure you never know when SSI might come in handy; and either way, it can't hurt to try.
Back to Down Syndrome Facts.
There's a long list of families waiting to adopt a child with Down Syndrome.
Over 200 adoptive families that have already passed their "home studies", at the time of this writing, who have requested specifically a child with Down Syndrome. If you find yourself in the position to bless one of these families with a child, you can get in touch with the organization here.
Low Muscle ToneMore about low muscle tone here.
Down Syndrome Life Expectancy
From NDSS: Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
Who's Being Silly?
If people never did silly things, nothing intelligent would ever get done.
Down Syndrome and Learning
From NDSS: All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.