Not A Game

By Arc of Hanover Board President, Katrina VanHuss

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Every year my family has to prove that my daughter still has Down syndrome. Every year we have to prove that every cell in her body has not changed, miraculously allowing her to now function at a typical level. The presumption, by the imposition of these evaluations, is that she has been cured of Down syndrome and is now gaming the system.

The hours spent by professionals to ensure that this 34-year-old, 4'10", intellectually disabled, diabetic, autistic, loving, vulnerable, dependent person is ok to receive societal benefits is expensive. And now, we decided to make it more expensive and less accessible with the changes to Medicaid.

"We struggle to make sense of what on its face appears senseless, unnecessary and cruel, while trying very hard to do right by everyone impacted." - Kendra E. Davenport, MPL, President and CEO, Easterseals. 

“My son’s genetic condition (22Q11.2 Deletion Syndrome) is forever. No doctor or scientist would disagree. But we spend a lot of personal and taxpayer time and money proving this annually — imagine semi-annually? And anyone who’s done it knows it’s a data minefield: miss one point, one deadline and lose services.” - Jennifer Schell Podoll, Chief Development Officer at New York Public Radio. 

We know these actions were not driven by cost reduction because the accompanying tax policy drives up the debt and deficit to historical highs. We know the elimination of fraud, waste, and abuse did not drive this bill, because no plans are made to eliminate fraud, waste, and abuse except the imposition of even more paperwork designed to make it harder to get help, like my family having to prove my daughter still has Down syndrome, every year.   

To hate, we must answer with love.

To violence, we must answer with peace.

To lies, we must answer with truth.

To confusion, we must answer with facts.

To dogma, we must answer with logic.

We must answer. 

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The whole of The Arc of the United States and its many chapters is continuing to advocate for the preservation of needed systems and services for and the organizations providing support to people with disabilities. We continue to turn to them and our colleagues at The Arc of Virginia for information and guidance as to advocacy efforts, educational programs and interventional opportunities. 

July 23rd through 26th, Arc chapters joined the effort in Washington, D.C., supporting “The 60-Hour Medicaid Vigil.” Sponsored by Caring Across Generations, the event was held “in honor of the 60th anniversary of Medicaid and to hold Congress accountable for the historic cuts that passed earlier this month.” You can learn more here - Protect Medicaid Vigil.

Image from "The 60-Hour Medicaid Vigil" postings from Caring Across Generations, altered with a filter and vignette.