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, people from Kansas, New York, Oklahoma, and Rhode Island 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. I interviewed self-advocates, families and providers about whether their services have been cut and if so, how they were affected by the cuts.

How Services Have Been Cut?

DS from Rhode Island says: “Budget cuts have caused a lot of my friends to have the hours service providers give to them cut because their provider agency has had their budget cut.”

Others are facing other changes in Medicaid service delivery. BL from Kansas says: “Our services have not been cut, but people are talking about managed care replacing the way people receive their services.”

How Changes Might Affect People

Self-advocates, their families, and the people who support them are trying to figure out all the information they can about changes to Medicaid to find out what services they are eligible for, how changes might affect them, and what they can do to prepare.

BL says: “People are educating themselves and others so when the Medicaid cuts are figured out, everyone will be better prepared and have an understanding of how the changes will affect them.”

DS agrees: “We think education is a powerful tool, so we would educate people so they do not have to say they do not understand” if their services change.

DB from Oklahoma says she would do research on the service systems and organizations that support people with disabilities. That way, “my friends and I would know how to access the service system so we would be armed with our knowledge and we could educate others.”

But some people say they have talked with their friends and supporters and still don’t have the information they need.

Many Need More Information

Self-advocates are also letting their legislators know what the cuts will mean to their daily lives.

BL says: “People are trying to educate their legislators about how this would affect people who get services and people who support them. Self-Advocates feel that they would lose control of their services that they worked so hard to get.”

He adds: “We are trying to figure out how our legislators are going to vote so we can put in place our new legislation. We are concerned about the effect budget cuts might have on the consumer-directed Medicaid services initiatives based on the recent Kansas law (KSA 39-7,100). We are educating everyone so we don’t lose control of our services.”

SA from New York reminds us what cuts can mean for self-advocates and people with I/DD: “If my services were cut, I am lucky to have resources that would step in to make sure that I received the services that I needed. But everyone doesn’t have those same resources.”

But, she adds, “All of my medical services would be affected. Medicaid currently pays for all my therapies and medical equipment. If I was not able to get these things I would not be able to receive my wheelchair that helps me get to work. It also helps me get around at work so I can have a job.”

DS also says she knows people who would not be able to work, because they wouldn’t be able to pay to get there.

DB agrees that without Medicaid services, “I would not be able to be a part of my community or have the quality of life I have now.”

DS concludes: “I would like to see self-advocacy groups educate themselves, so they could educate their legislators about what it means to be A PART OF your community.”