Families’ Perspectives on Cuts to Medicaid

What can you do when your services are cut? How can you help educate yourself and others?

I am very excited about writing this issue of my blog because I think it is on a very important and timely issue. Over the next few months I will present different perspectives of self-advocates, families and providers regarding how they feel about having their Medicaid budgets cut.

In this month’s blog, families of people with I/DD from Oklahoma and Washington, D.C., were interviewed. They did not wish to be identified by their full names.

Medicaid services in many states have been cut in the past few years, and the following questions and responses are based on actual or potential Medicaid service reductions.

The first question I asked families of self-advocates was: Have the Medicaid services of your family member been cut?

S.S. from Washington, D.C. said: “Not yet.  We are trying to reduce costs by substituting overnight monitoring for awake overnight staff, but we are having trouble convincing the Medicaid office [that this is a good solution].”

L.D. from Oklahoma said, “No. However, my son has been on the waiting list to get services so that he can live independently from us. When I become my son’s staff, our relationship changes as he wants his Dad to be his Dad and it is confusing to him when I’m both his Dad and his staff. My son does not fight with his staff when it’s not me because the role of his staff is clear to him.”

A follow-up question was, “What alternatives does a family have if their self-advocate’s Medicaid services are cut?”

S.S. said, “[Right now], my son lives outside of our home. He is with us for one day a week to save money (and for fun). I guess we could try to do two days a week, but it would be hard on us physically.”

L.D. agreed that families have to take on more responsibility for care if services were cut, and that this can be stressful.

“If my son’s Medicaid services are cut, either my spouse or I would have to quit our job to assist him. It would be a difficult family situation if that were to occur,” he said.

I also discussed with the families interviewed how they felt they could communicate to legislators and other government officials what the needs of people with disabilities are regarding Medicaid services.

S.S. was skeptical about how well the current system works. “It seems like squeaky wheels and drama queens still get more money and few people are thinking about how we could all do with less so everybody could have basic supports,” she said.

L.D. suggested that his family could go to the capital and talk to the legislature about the needs of people with disabilities.

The final question I asked was how cuts to Medicaid services would affect the lives of self-advocates and their families.

S.S. said, “What I worry about most is that one: nobody would recognize how hard we and the agency have already worked to minimize costs (and we continue to do so); and two: the state would make arbitrary, not person-centered, cost cuts. I think my son’s health and freedom would both be at risk with careless cuts. What about system costs? Why are more states not trying to save money with better data systems like Therap?”

L.D. agreed that cuts could take away important options that are very important to self-advocates. He said, “My son might have to go live in a group home, which is not his choice of how he or we want him to live.”

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