Dignity, Respect and the Tax Man Cometh

Today is April 15 better known as Tax Day, and it is a day many in our country curse.  I don’t curse it. I don’t mind paying my fair share of taxes.  I believe that freedom is never free and that our taxes are part of our responsibility. However, I do question many of the things I hear about how my tax dollars are spent.

Miss Rachel Goes to Washington
Miss Rachel Goes to Washington


For example, do you know the average national Medicaid cost to serve a person with an intellectual disability in an institution in 2009 was approximately $137,000, compared to an average of $44,000 to serve the same person in the community. Yet states continue to spend a large portion of Medicaid dollars on unnecessary and expensive institutional settings.  An article published in “The Hill” in July 2011 and co-authored by Tom Harkin (D-IA) and Cathy McMorris-Rodgers (R-WA) stated this fact and went on to state this, “In 2009, 17.4 percent of all national Medicaid expenditures went to serve people in institutions. Our continued heavy reliance on outdated and expensive institutions to serve people with disabilities reflects inertia and politics rather than the needs of people with disabilities.”  So this is one way your tax dollars are at work.  Why?  You should inquire.

Next is sheltered workshops. For those of us who advocate for individuals with disabilities to be treated with dignity and respect and have some glimpse of equality, there are a ton of reasons why sheltered workshops do not necessarily help most individuals with disabilities.  Many of these are outlined in this report from the National Disability Rights Network, Segregated and Exploited. This quote from that same document sums it up well: “Sheltered workshops are often celebrated for providing an altruistic service to their communities while neglecting the fact that in reality they provide workers with disabilities with dead end jobs, meager wages, and the glimpse of a future containing little else.”  For the purposes of today’s blog, let’s just look at the tax side of this equation.  The GAO (United States Government Accountability Office) reports about 46% of sheltered workshop funding comes from state and county agencies (tax dollars.)  Beyond the fact that this system relegates individuals with disabilities to a life of disability welfare, it is once again your tax dollars at work.

Here am I for at least the past five years trying to help get the ABLE Act passed. From the time our families birth our children (and before for those who get a prenatal diagnosis) we are warned about the $2,000 benefit rule.  Don’t save for your child with disabilities or they may not be eligible for the government supports they will most likely need to be able to function independently.  This is counter-intuitive to what we tell other Americans. Save, save, save for your retirement and your children’s education. Really the word we should use is discriminatory.  While my friends put money into tax sheltered accounts for their children’s future educational needs, I can set up a trust with a high tax rate for future use. In other words, the people who really need us to be saving for them are penalized by outdated laws. So the ABLE Act is introduced to help families like mine  afforded the opportunity to save for Rachel so that hopefully we will not need as much disability welfare.  Here we are years later still trying to get this common sense law to pass.  Again, your tax dollars at work. 

April 15, 2013 will pass today and the ABLE Act still awaits passage.  I’m optimistic.  On April 15, 2014 I am going to be able to say that Congress joined my own Senator Jerry Moran and my own Congressman Kevin Yoder and passed the ABLE Act during this Congress. 

Sen. Moran, Rep. Yoder, Rachel and Jawanda at the Champions of Change Awards
Sen. Moran, Rep. Yoder, Rachel and Jawanda at the Champions of Change Awards


It will be a giant step toward future independence for the Rachel’s of this country.  Maybe more importantly, it will be a giant step toward giving the Rachel’s of the United States respect and the opportunity to live independently with dignity!

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One comment

  1. Jawanda, love that you continue to educate us on what is unfair and what we can do to exact change within our country. Keep up the great work.

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