Diane Grover and her family have lived in Tennessee for the last 16 years. While Diane is from Chicago and her husband, John is from Wisconsin, they made roots just outside Memphis after moving frequently for John's job. Diane describes Memphis as home for them as it’s the longest they’ve lived anywhere. Diane has 5 children and 1 grandchild. Her 18-year-old daughter MaryEllen has down syndrome and an additional underlying condition called down syndrome regressive disorder. This autoimmune disorder causes her antibodies to mistakenly attack her system, cutting off oxygen to her brain. She is currently being treated for it and has responded beautifully to her treatment. IVIG is a treatment to boost a weakened immune system.
MaryEllen is on TennCare through the Katie Beckett waiver, a program for children under the age of 18 with disabilities or complex medical needs. Before Katie Beckett, MaryEllen did not qualify for the coverage she needed. She was denied care by her dad’s employee health benefits because the care went outside of basic planned care. After Katie Beckett, which she fought hard to get, the family still had to fight for 6 months . MaryEllen’s entire 18 years has been marked by struggle and an inspiring battle her mom fights to get her the care she needs. The family’s primary health plan is from John’s company, it doesn’t cover what Maryellen needs. Now the TennCare does.
Diane describes her daughter as “sweet, gentle, kind, and very funny”. Diane used to have a coffee company, but when MaryEllen got sick she unfortunately had to let it go. Diane’s coffee company was created to help plan for safe employment for MaryEllen’s adult years. As MaryEllen’s condition got increasingly worse, Diane made the decision to close the business. She describes it as “a wonderful social justice minded business that was a catalyst for growing jobs and the entrepreneurial spirit in families with children with special needs. We taught many families how to become entrepreneurs and include their loved one in the plan. Perhaps one day we will return to it. But for now, MaryEllen’s continued healing is our main focus.”
The family loves the outdoors. Diane says “Anything that gets us outside is a plus! We have a small hobby farm with goats, donkeys, and chickens. Perhaps we will tie them into our next project. I am training them to be support animals or therapy animals for people with disabilities, by having MaryEllen work with them as her therapy. We will see where this brings us.” Before Covid, Diane volunteered often with the spouses from John’s company and loved it. It was one of her favorite things to do. As MaryEllen gets better, Diane plans to get back out there and help in the Memphis community where she can. Diane explains that addressing MaryEllen’s journey for health has been “...all-consuming the last 3-4 years, but since her IVIG treatment, things have gotten incredibly better.”
Diane, in her own words, describes why it’s important to fight for the healthcare needs of all Tennesseans: “It’s unfortunate that there is so much work left to be done to create a state that treats people with disabilities the way they deserve to be treated. We really do have a long road to go to getting where we should be for healthcare for people, for the dignity of their lives, and for them to have access to appropriate healthcare. It’s so disheartening that health care is such a difficult thing for people to access. I think it's our responsibility, it’s neighborly, it’s how we are good stewards of the community we live in, to make sure we are part of the solution. We had no services before Katie Beckett. Unfortunately, much needed services were being denied over and over again. Every decision we made was due to the fact that we could not get access to services, and our health plan would not cover so many things. That’s why I created my coffee company. I knew something was wrong and it was a way of creating therapy for our MaryEllen. That’s how that was born. Every bit of this was born out of this struggle.”
MaryEllen’s disability was depriving her brain of oxygen while access to care was being withheld. She may not have survived without TJC stepping in to assist her family in accessing the care she needed to survive.
Tennessee Justice Center is proud to honor Diane Grover as a 2023 Mother of the Year for her persistence and perseverance in ensuring her daughter receives lifesaving care as well as for her entrepreneurial spirit and efforts to ensure a better life for people with disabilities in her community.