Last week I was invited to share our families Medicaid story at Leader Pelosi’s 53 Anniversary Medicaid Press Conference. It allowed me to share a piece of you with the rest of world. It’s had over 25K views. Here’s what I said.
After being born with a disability to a teen mother with very few resources it was Medicaid that made it possible for my family to get me the specialty care I required. I consider myself fortunate to have been born the decade after Medicaid became available to people like me and my children. For over half my life Medicaid provided the support I needed. I can remember feeling so proud and self-sufficient the year I transitioned off of Medicaid and onto my employer’s health care plan.
It was a pivotal moment in my life, but I wouldn’t call it was my happiest. The happiest was February 3, 2012. The day my daughter Olivia was born. You see I never imagined I would become a mom. I had so many odds stacked against me, not to mention I’m a planner (if you’re a Virgo you know what I mean by that). I like to think ahead and make sure I have everything I need to be successful. By the time Olivia was born I had more than 10 years of employment and employer health care coverage under my belt. My husband and I had prioritized our careers before starting a family because it was important for us to make sure we had the resources to take care of our children. We also assumed that even if we had a child with a disability, which was likely, we would have what we needed to take care of her and raise her to be disabled and proud like her parents.
As expected Olivia was born with a disability, but not just one. Olivia was diagnosed with a very rare neurological disability called, Schizencephaly. Parts of her brain were missing, which caused her to have a variety of developmental delays. She required early intervention, physical therapy, occupational therapy, feeding therapy, speech therapy, mobility training and a ton of specialty care doctors and services. And we made it work…for a while. As Olivia got older her needs changed and while we were able to keep up with all the co-payments and out of pocket costs for the first couple of years we found ourselves in debt and needing support fast. We were racking up about $40,000 in out of pocket long term services and support costs to keep up with Olivia’s quality of life needs. Our families combined middle class income wasn’t enough. Yet it was too high to qualify for Medicaid services. However, Olivia did qualify for Medicaid through a home and community based waiver because of her Intellectual/Developmental Disability after she turned 3, and it saved us. It was an economic turning point for our family that prevented us from losing our home and being able to bring our Son, Sage, into a family with a lot of love and a lot less financial stress.
While both Sage and Olivia continued to be covered under our employer health plans we had Medicaid to help cover much of the out of pocket costs associated with Olivia’s needs. Aside from co-payments Medicaid covered her wheelchair, her walker and In Home Support Services that was she needed on a full time basis. Having access to these services to keep Olivia at home with us and out of the hospital or an institution kept our family whole. We were able to decide what was best for our daughter.
Slowly our family was able to pay off our debt and get back to self-sufficiency. Thanks to a Home and Community Based Medicaid Waiver.
Sage also benefits for Medicaid coverage due to his orthopedic disability (we share the same disability, Osteogensis Imperfecta). His needs are not as extensive has his sisters, but when needed Medicaid is there to help pick-up some of what our private plan does not cover.
Part of Olivia’s disabilities included having seizures. In 2016, one month and 3 days before her 5th birthday, Olivia had a catastrophic seizure in her sleep. She spent four days in the hospital trying to recuperate, but didn’t make it.
I share our family’s story with you because we believe that Medicaid and Home and Community Based Waivers are an invaluable part of our nation’s health system. It has been there for thousands of us and we need it to be there for many generations to come. We need families to know they are not alone and that they can count on support when it’s needed. We need quality long term services and support and the Empower Care Act to get us beyond the status quo and keep us thriving. Blocking granting Medicaid services is not a solution. In fact it would do more harm than good for people like my daughter who needed extensive Medicaid services.
Happy anniversary Medicaid. Thank you for being there for me, my children and thousands of other people who have needed you.
Livy, your story will continue to make a difference.