My husband and I are parents of a 21-year-old born with Aicardi syndrome, a rare and debilitating disorder. It is our privilege as her parents (and legal responsibility as her guardians) to look out for Zoe's best interests and all that entails as she cannot do so herself.

In this pursuit, I wrote a letter to Tim Huelskamp, the U.S. representative from the Big First, regarding my concerns about the future of disability funding at the federal level of our government.

Here is his response:

"Citizens with disabilities have diverse and unique needs for quality services due to the wide spectrum of challenges they courageously face. My heart certainly goes out to the caretakers, parents and families that experience the challenge and blessing of supporting individuals with disabilities. I recognize the importance of local, community-oriented support. Likewise, I know many of the services and assistance programs for people with special needs receive significant funding from the federal government.

"The federal government faces major challenges right now, including an unprecedented level of debt ($15 trillion) and trillion-dollar annual deficits. If no changes are enacted to the biggest drivers of the country's spending, then the country's economic situation will only continue to decline. Our federal budget should put our most critical national priorities first: protecting America at home; and abroad; growing our economy and creating jobs; and reinstating budget discipline. As Congress considers increased federal spending proposals, it is important that any decisions made reflect the most efficient use of taxpayer money."

Here is my response:

How can it be that persons with disabilities do not qualify as one of "our most critical national priorities?" One naturally assumes a member of Congress would want to protect those among us who need assistance most and see their well-being as a priority. And, while it is true, "local, community-oriented support" is absolutely necessary, federal support cannot erode if these persons are to survive and succeed.

As one of my friends commented to me, in what universe are the disabled the "biggest drivers of the country's spending?" From everything I read, the top three "drivers" of the national debt are the Bush-era tax cuts, the Iraq/Afghanistan wars, and interest paid on the debt.

Nowhere do the disabled show up as villains in this scenario.

Margo Apostolas

Hays