Sarah Schwegel


“Hi, my name is Sarah Schwegel. Can you check to see if I am eligible for continued Medicaid coverage through the Social Security Administration‘s 1619(b) rule?”

“The what?”

“Rule 1619(b). It is the federal program for SSI (Supplemental Security Income) recipients who are disabled and want to work, but can’t lose their Medicaid benefits. It is similar to the Ticket to Work Health Assurance program.” (The program gives workers with disabilities the opportunity to “buy into” Medicaid at higher income and asset allowances than traditional Medicaid.)

“Oh, I’ve never heard of that. Let me transfer you.”

The above is a conversation I had at least six times last Monday.

Finally, someone who knew what Ticket to Work was answered the phone.

“So, you want to apply for Ticket to Work?” he continued the conversation.

“No, 1619b, for people who receive SSI, not SSDI (Social Security Disability Insurance).”

“They are the same in Missouri.”

“No sir, they are not the same — 1619(b) is a federal program; Ticket to Work is a MO HealthNet program. Do you have a supervisor who may know more about the different programs I can speak to?”

“Let me go talk to her. Can I put you on hold?”


Ten minutes later, after speaking with his supervisor: “You need to talk to Social Security for the form. They will send it over to us.”

“OK, thank you. Can I get your supervisor’s name for reference when I am talking to Social Security?”

After two hours of being on hold and being transferred to various departments within the Family Support Division, that is what I got: Go call another agency. The next day I called the national Social Security Administration hotline because you can no longer call the local field office unless you have a representative’s extension, which I did not.

“Social Security Administration, how can I help you?”

“Hi, my name is Sarah Schwegel. I am interested in getting on the 1619b continued Medicaid coverage for working people with disabilities. Can you help me with this or connect me to someone who can?”

“Can you repeat yourself?”

“Sure. I am interested in getting on the 1619b program. It’s similar to Ticket to Work Health Assurance.”

“Please hold.”

She put me on hold for about four minutes. I am not 100 percent sure what she was doing, but I can only assume that she was looking up 1619b.

“You have to talk to Medicaid to get on this program.”

“Well, I was on the phone with Medicaid for two hours yesterday, and a supervisor in the Boonville, Mo., office told me to call Social Security.”

“Oh. Well you have to be receiving a cash payment of at least $1 to get on that program.”

“OK. I reduced my hours at work so I could get that payment starting in April — ”

“We still have that you make $1,000 a month and receive child support.”

“I haven’t received child support in a year and — ”

“Ma’am! You need to listen to me! You aren’t eligible for this. They must have not updated your account.”

“I went in in December, and they told me it was updated with the child support.”

“You need to go to your local field office. I can’t make changes from here.”

“Would you mind transferring me to the Gravois Bluffs office?”


“Thank you.”

And with that, my phone went to the end-of-call survey. As one would imagine, I was pretty upset at this point, so I decided to take the survey (which I don’t usually do) and honestly review my experience, hoping that it would calm me. It didn’t, so now I am writing this blog.

I think my experience last week highlights one of the biggest problems in today’s system: the lack of communication between departments within governmental organizations, as well as the even more profound lack of communication between federal and state agencies.

Many of the programs that support people with disabilities were created before assistive technology was widespread and before people were surviving into adulthood. They just aren’t ready to support working people, which is unfortunate because the government has mandated that agencies with federal contracts hire a percentage of people with disabilities.

However, if people with disabilities get hired and lose their support services because they are working, they will ultimately lose their job. And the vicious cycle continues.

The young, naive advocate in me wants to build an entirely new system that works well for people with disabilities and doesn’t have an obscene amount of red tape. But the realist in me knows that building a new system is impossible, and we will just have to make due with what we have and push through policy change to help clear the muddy water ever so slightly.

Sarah Schwegel is an intern in the Public Policy and Advocacy Department at Paraquad. She can be reached at or on Twitter at @sarahjschwegel.

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