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Friday, June 23, 2017

Voices of Care: Mary and Erich

This blog is part of an ongoing series of stories from people across the country who would be negatively affected by the ACA repeal bill currently being negotiated in Congress.

Let me tell you about my son, Erich. 

He is friendly, compassionate, and a loyal friend. 

When he grows up, he wants to be in a band and to be a Power Ranger. 

He loves to dance to videos we find together on YouTube. 

His greatest joy comes from being around his friends at Miracle League Baseball (for special needs), where he plays third base. 

Erich was born with Downs Syndrome and a severe intellectual disability. At 20 years old, he functions at roughly the level of a second grader. While many young adults with Downs have been able to integrate into society and take on employment, Erich’s disability is so profound that he requires full-time care and he will never be able to live independently. 

My husband died suddenly in 2009. So today, it is just Erich and me. 

After my husband’s death, I was forced to close down the business we owned and we lost access to “traditional insurance." Erich and I were able to get coverage through Medicaid. It has been a critical lifeline over these last nine years and I don’t know what would happen to either one of us if it were to go away. 

Through the services provided by Medicaid and other supportive programs in our community, I am able to keep Erich at home, where he belongs. Now, with the GOP threatening to cut funding or put caps on many of those programs, I don’t know what families like ours are going to do. 

Erich needs Medicaid to ensure access to weekly speech therapy as he has an enlarged tongue, small mouth, and weak facial muscles. He has difficulty communicating and saying words like “water," "phone," two and three syllable words like "peppermint.” His sentences are two and three words. Erich is prone to sinus and allergy infections due to a smaller cartilage in his nose typical of Downs Syndrome. He suffers from skin rashes due to the infections he gets. His legs, back, and stomach break out in infected, pus-filled, large pimple-like sores. This requires prescriptions and doctor’s visits and occasionally a visit to the emergency room. I cannot afford this and depend upon these services to keep my son healthy.  

As a "boomer generation" widow, I need it to make sure that I am healthy enough to show up for him. He has NO ONE else. I depend on these services, too.

When I hear about potential cuts, I think not just about Erich, but about all his “special needs” friends he has made over the years at school, the tutoring center, and on the baseball field. Cutting or capping programs like Medicaid will devastate us all. Many of his friends require more services, are wheelchair bound, have speech, hearing, heart, and constant ear problems.  

As a society, and the greatest country in the world, we have to continue support our “special people” and families like ours. These “special people” enrich our lives and show us what is important…caring for each other, compassion, and friendship. Vote NO on ACA repeal. Keep these services for us!!!! 

Learn how you can get involved in the Protect Our Care campaign to stop Congress from cutting Medicaid.