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Medicaid & the disability community: One family’s journey

Stock photo of mother and child
Stock photo of mother and child

Georgia’s Medicaid health insurance system covers many different Georgians, including those with disabilities. The coverage provided to people with disabilities offers much-needed support to individuals and families that might otherwise fall short of addressing their health care needs.

While Medicaid has been a lifeline for some, a full expansion of Medicaid would bring additional funding to the state and strengthen existing programs. For every dollar Georgia would spend to close the coverage gap, Georgia would receive up to $9 in federal funding. The recently passed American Rescue Plan added to the financial incentives available under Medicaid expansion; under the new federal law, Georgia could attract $1.3-$2 Billion to cover the costs of expansion and offset state spending on other priorities.

This additional funding could benefit Georgians who need Home and Community-Based Services (HCBS) Medicaid waivers. HCBS waivers help people with disabilities get the health and support services they need so they can live independently in their communities, rather than in nursing homes or long-term care facilities. Currently, more than 6000 Georgians sit on a waiting list for one of these waivers.  The additional funding that Georgia could earn under Medicaid expansion could reduce or possibly eliminate the HCBS waiver waiting list altogether.

Below is a first-hand account from a Georgia mother, whose 9-year-old daughter is covered by Medicaid. Her daughter was diagnosed with Ataxic Cerebral Palsy at 18 months. Since her diagnosis, the two have navigated challenging care and coverage issues. Their experiences highlight a number of the policy and advocacy issues that consumers contact GHF about regularly: Medicaid, Medicaid expansion, difficulty finding health care providers, Georgia’s public health system.

The account has been lightly edited for clarity.

Hernandez Family – Lawrenceville, GA

When my child was born, we were living in a rural Georgia community and had to drive two hours to the hospital for her birth. Due to unexpected circumstances, Amelia was born at 41 weeks via emergency c-section. She had complications at birth that resulted in her not breathing for a short time and her brain sustained damage because of that time without oxygen. She spent 13 days in the Neonatal Intensive Care Unit and finally we were able to take her home. At the time, we knew there were some things that happened at birth but were not advised that anything beyond those things that occurred at the hospital could be going on.

When Amelia was 6 months old, an early intervention system called “Babies Can’t Wait” started calling us. I could not understand why they were calling because there was nothing wrong with our child. She was breastfeeding normally and seemed happy with her little noises. A few more months went by and we started noticing that Amelia was not meeting milestones. We shrugged this off a little thinking, “Eh, so she isn’t developing just like typical, but that’s ok.”

When it became more pronounced a few months later, our pediatrician told us that she may have some developmental delays and may have some special needs. We did not fully comprehend what that meant at the time but continued talking more with doctors.

Finally, when Amelia was 18 months old, she was diagnosed with Ataxic Cerebral Palsy (CP).

Folks who are part of our community or families like ours call this “D” day or diagnosis day.  It shakes a parent’s soul to beyond what is comprehensible. We then start a long, dark journey of grieving the loss of a “typical” child and the dreams that go along with that. For a description of what the experience of raising a child with a disability is like, there is a wonderful parable/poem that Emily Perl Kingsley wrote called “Welcome to Holland”. Most of our families can relate to this story. 

Somewhere along the way, we had some government services provided through the Babies Can’t Wait program and we had to go through a long and arduous paperwork process to get something called the Katie Beckett waiver so that Amelia could receive Medicaid, or medical assistance. Once approved with Katie Beckett, our family was then inserted into a realm of trying to navigate, oftentimes independently, through a long list of various programs that are covered by Medicaid to provide services and assistance to our families. Navigating this realm is a full-time job by itself. These programs are not intuitive and not easily navigable, and each has different policies, paperwork and procedures. There are few to no resources available to directly help our families through the convoluted systems. 

We have moved to three different states with my job, hoping and praying for a better situation for Amelia and our family in each one. Each state has had its good and bad programs and overall culture. When my then-husband left, we ended up back in Georgia, close to my family, who are great, but not able to help with Amelia due to the physical demands of care that Amelia needs. What is unfortunate and not known up front is that we had to reapply for Medicaid in each state because it is not a federally run funding program. Instead, it is managed by each state. The moving and lapses in time in each state when we were not covered have caused medical bills to pile up to a debt that remains consistently unmanageable for me. Although I earn a pretty decent living, we are living paycheck to paycheck. It is a struggle every day.

The greatness of each day comes from waking to this child that is the brightest light in this world. Her smile takes away much of the pain of the hardships that we regularly face.

At age seven and while at school, we noticed that she was regressing in her physical abilities (e.g., walking) and just did not seem herself. She was struggling to focus on her studies. When we described that to her neurologist, she had a suspicion of what it was. Amelia was diagnosed at age seven with a rare form of epilepsy called Electrical status epilepticus in sleep or “ESES epilepsy”. It was difficult to receive this diagnosis after so many years thinking that beyond the CP, she was an otherwise healthy and happy kid. As if Amelia did not have enough to deal with…

She has been through numerous trials of different extreme drugs to try to get the destructive brain waves at night to stop. We continue trialing drugs even today and do not know what will/won’t work until we go for overnight testing at the hospital. Nothing has been entirely successful thus far and all the while my child is taking all of these mind-altering, mood-changing drugs, we have no certainty of how those will affect her for the long term.

I now know that my family cannot financially survive without Medicaid. I also know that there are many related systems that are broken and need improvement. Our families, which already have daily struggles beyond what most folks can comprehend, cannot continue through the insane policies and requirements to get what our child/family needs: necessary equipment (e.g., bath chair, lift, walker, wheelchair), appropriate medical care, therapies (speech, physical, occupational), home health assistance, or other community-based programs to assist in the development of this beautiful child. I have spent an exorbitant amount of time on the phone with insurance folks, vendors, and Medicaid program agencies trying to explain our situation. We are often met with comments like, “Oh, we understand but…” and then a reason why they are not able to help, regardless that the mission of their program is to provide such help.

Today, I am a single full-time, hard-working mother of a wonderful 9-year-old, who requires physical help for every aspect of her daily life. While I have some Medicaid-funded (GAPP) hours to hire both a personal care assistant and a skilled nurse because of her more recent diagnosis of ESES epilepsy, we have not been able to fill either of those part-time positions for the long term. And because of the COVID situation, the quality of the nurse care has been unacceptable. We have been met with caretakers demonstrating entitlement, unreliability, lack of flexibility, and indifference about the impact they could be making for Amelia and our family. I cannot articulate how extremely frustrating it has been.

In speaking with the multiple provider agencies, it sounds like there is a shortage of skilled care nurses from which to select right now because of the COVID-19 pandemic, the high demand for nurses, and much higher pay for nurses in hospital situations. We need help, and it takes a person with a decent heart to work and stay with our families. That seems to be hard to find these days, and that we cannot find that after meeting so many people is disheartening.

Perhaps someday after I retire from federal service, I will work towards trying to advocate more towards the improvement of Medicaid and other insurance systems, whose policies and protocols often hold back the things that my child and families like ours so desperately need. Thankfully, I still have the wonderful gift of my child, who could make the unhappiest person smile just by her momentary presence. Even through all of the brokenness of this world, I am the lucky mom that gets to witness that!

Organizations across the state are taking action to address issues with the current Medicaid system, as well as protect and expand Medicaid for the state. To get involved and advocate for people with intellectual and developmental disabilities please connect with the Georgia Council on Developmental Disabilities and The Arc Georgia.  


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