Indiana’s Medicaid Program My Top Issue

The inability to qualify may force me to leave the state

By Anna Moore

Editor note: This article is written by an individual who has disabilities. This *should* mean she is eligible for Indiana Medicaid benefits. Such benefits are meant to be available to adults who are aged 59 years and younger, blind, or disabled and who are also not eligible for Medicare. Additional qualifying programs, for example, the Community Integration and Habilitation (CIH) waiver, provide services that enable individuals to remain in their homes or community-based settings. Support services permit people with various disabilities such as cerebral palsy (CP)—which today’s author, Anna Moore has—to meaningfully contribute to their communities.

In the article, Anna references dysarthria caused by her CP. Dysarthria is a motor speech disorder characterized by slurred speech, slow speech, and weak mouth muscles. It happens when brain or nerve damage makes it hard to control the lips, tongue, jaw, or vocal cords used for speaking.

Anna’s mind, however, is sharp. She recently graduated with an IN high school diploma, is registered to vote, and plans to vote in the upcoming election. She is active in several community groups.

Hi, my name is Anna Moore. I am in my early twenties and currently live in Indiana. I want to share my experiences going down the Medicaid waiver road and having a disability while living in Indiana.

I have cerebral palsy (CP). CP is a neurological disorder that develops at a young age. It affects your movement, your balance, your muscles, your speech and so much more. There are several levels of CP. Mine affects my ability to talk (dysarthria) and use my left side.

Diagnosis came early

For some background, I was diagnosed with CP at the Johns Hopkins University International Adoption Clinic before I was 2 years old. This was the start of an extensive medical journey involving many doctors, therapists, and surgeries. While living in greater Baltimore, Maryland as a toddler, I received services through the Maryland Infants and Toddlers program. My many weekly visits included multiple occupational, speech, and physical therapy services through the state and at Johns Hopkins. When I was almost 3, my family moved to north Indianapolis to buy a home in a better school district and to raise my sister and me in a safe, friendly community.

The wait for services in Indiana was long

It took over a year to be approved for an Indiana Family Support Services Medicaid waiver. This waiver supported music therapy with music therapists to try to improve my oral motor abilities through music-based ways like songwriting, singing, and learning instruments. This opportunity of having music therapy sessions grew my performing arts-based passions. I fell in love with producing music, songwriting, and singing. The waiver also provided recreational therapy; my therapist and I worked together for many years. Additionally, I attended an early childhood preschool program.

On top of all these services, I had to travel to Cincinnati to see a specialized speech therapist. This was a lot of work. It wasn’t terrible, but it wasn’t my favorite thing to do.

To this day, I have trouble using and controlling muscles that affect my speech, as well as the left side of my body. Doctors at Johns Hopkins and Purdue, where I participated in research studies, determined that these motor deficits are attributed to abnormal brain development, probably occurring in utero.

I’m now an adult; I still have CP. I will always have CP.

Unfortunately, I aged out of Indiana Medicaid waiver support services at 19 years old. After I aged out, I applied for Medicaid assistance. There was no guidance or assistance in completing the necessary paperwork, and it was very complicated. Services were denied; my parents appealed. The notification to review my case with a judge would arrive in the mail days, or even weeks, after the scheduled meeting date. They also claimed I had two applications in the system, and they could not fix it.

At one point, the administrators asked me to get on the phone. This made me feel very annoyed, as it is very difficult for people to understand me over the phone, due to the dysarthria. I use American Sign Language, but it is not possible to communicate this way over the phone (Also, I am not often around people who know American Sign Language well.)

Ultimately, after the second appeal, services were denied. I was unable to meet their requirements to qualify for the Medicaid program. Indiana’s Medicaid administrators made this decision despite me having qualified for services for nearly 15 years in this same state and struggling with a life-long disability.

I want to live on my own

Since I was little, I have been learning a lot of skills to be ready to live on my own and maintain a full-time job. I know I will have some challenges in the future, but I will figure it out somehow. I just completed a certificate in a Health Information Technology (HIT) Program. Finding work in the HIT field is challenging because the field is small. Most of the jobs in the HIT field start at around low-medium range salary, and some of the jobs in this field are in a non-traditional environment.

So, I might do multiple side jobs to make ends meet. I will likely apply to Medicaid again in the future, though updated state eligibility requirements make it even more difficult to demonstrate need. If I would get approved, the state also requires frequent recertification, or proof, of need even though disabilities like mine are life-long. Additionally, the waitlists are growing longer and longer, exceeding 1-3 years.

Indiana invested in me as a child; doesn’t want to now

Indiana invested in my care as a child and teen, but now I may need to move to a different state, away from my family and my friends, to a state that will meet my needs and match some of my wants, too. Living in a more diverse city, with public transit and accessible Medicaid funding, may be necessary for me to establish independent living. But I have a fighting chance of living on my own as I am endlessly learning new skills.

What I want legislators to do

It is important to vote so that fresh perspectives can improve our state. For example, Coumba Kebe, running for state treasurer, has a background in public health and healthcare operations. Zohran Mamdani, New York City’s new mayor, has already made an impact by implementing new programs for children and families. If Indiana representatives followed Mamdani’s lead, exciting and positive changes could follow, such as ensuring access to good healthcare and pathways to independent living for people living with disabilities. In addition to providing an improved, well-funded Medicaid program, I would like to see Indiana make voting more accessible for all eligible voters—especially young voters and people with disabilities.

Legislators - and people in general — need to look at people with disabilities as more than disabled people because we all are just human beings. We deserve healthcare and services that help us figure out how to be independent—doing homework, cooking, laundry, etc. Judgment from friends, family and the community can be very hurtful; I don’t feel limited because I have created unique parts of myself. I want people to see that.

While this is my personal experience, I know that I am not the only one in this situation. Thank you so much for reading my story!

---

What is a Medicaid Disability Waiver? https://www.arcind.org/supports-services/medicaid-waivers/

https://www.in.gov/medicaid/members/