Regular Lives for Families with Children with Disabilities
Interview with Kathie Snow
Produced by Minnesota Governor's Council on Developmental Disabilities
The Downside of Supplemental Security Income (SSI)
Kathie Snow: One of the things that frightens me is and some parents are aware of this… When your child is young and a minor and living at home, the child might qualify for SSI, Supplemental Security Income because of the parents' income. And then whenever the person turns 18, they're considered a legal adult. And then they no longer apply based on their parents' income, it's based on their income. And what a lot of families don't realize is... I mean a lot of parents just wait. "Oh, I can't wait for my kid to turn 18. He's going to get SSI on his own." That is frightening to me. Statistically, once a person goes on SSI, when they turn 18 and they're eligible, okay? Statistically only 1% of people ever get off in their lifetimes. So there's all kind of disincentives to work. I mean, a lot of people that are watching are aware of that.
So, we're talking about people that are going to be living below the poverty line all of their lives on what I'm going to call disability welfare. And that's not a criticism of people who get that. It's a criticism of our system that we have said it is okay if you have a disability to live below the poverty line starting age 18 and never have to work, never have to do anything. I mean you have a terrible life, you're living in poverty and you can never have more than $2000 in assets if you're single. We impoverish people. And we say that's okay for you to, at age 18 until you're dead, to live below the poverty line. It's like that is not okay. And so I think that parents have to investigate all that.
When our son turned 18, we told him the pros and the cons. And we said what parents need to realize is that ultimately the eligibility for SSI when you turn 18 is that you are considered to be unemployable. I mean they're not going to give you government taxpayer funding if you can go out and support yourself. I mean the expectation is when you're 18, when you're 18, when I'm 18, you go out and get a job and support yourself. So they're not going to give you money if you can go out and support yourself. So you basically have to go to SSI and say, I am unemployable. And that's how you qualify.
Well, but I only learned this from learning from people with disabilities themselves. And so when Ben…my son turned 18, we talked to him about it, and we said here's the pros, here's the cons. The pros are you get, at the time, $675 a month basically for doing nothing and you'll automatically get Medicaid so Daddy and I won't have to pay for this… I mean my son is uninsurable and like everybody else that has disability. And we won't have to pay this $300 a month for this high-risk pool that you're in. And we said those are the pros. I said the cons are you are going to be treated differently. You're going to get dependent on it, and you're going to have to go and prove yourself at some point that you can get off of it by getting a job as opposed to, you know, that you can just go get a job. And so our son said, no, he says I don't want it.
And, again, the system, including SSI and Medicaid, ought to be the last resort and not the first choice. And so we need to make sure that our children know, that we have to know this stuff and we have to help our children know it and listen to our children.
I've met so many families, unfortunately that, when the child turns 18 and is eligible for SSI on his own, the child is then seen as a breadwinner and the parents do not ever want the child to work because then they, the family, will lose this young person's SSI income. So this young person is now held hostage to what his family wants. And I think that is just so unfair that we have put this burden on them that… And a lot of young people don't want to be on SSI. They know that it limits their opportunities. It limits how much money they can put in their savings account or, you know, have. And… But they're being held hostage because of their families. And so it's not about us. It's about our children, and we have to make sure that they have those opportunities.