Being a voice for the voiceless

I went to the Women's March on DC - Indianapolis today, along with thousands of other people who care about inclusion, equality and justice. I fervently believe in core concepts of this march. Women's Rights are Human Rights. Freedom of religion. Love is love and the freedom to be who we are and love whom we choose. Education for all. Immigrants add value. Black Lives Matter. Diversity is beautiful. And of course, health care is a right, not a privilege. All of it.

It concerns me, though, that these concepts promoted by speakers and signs are rarely focused on the rights of people with disabilities. Just like women, people with disabilities are a huge demographic. About 19 percent of Americans have a disability. Yet able-bodied and nimble-minded activists pay little heed to the threat on civil liberties for people with disabilities. Little heed is paid to the idea of Medicaid Block grants being championed by many conservatives, and the devastating effect that could have on people with disabilities, for example. Or how repeal of the ACA and the return of pre-existing condition exclusions, and annual and lifetime maximums, could literally kill a number of people with disabilities. Or how the nominee for the Secretary of Educations seems to have little grasp of IDEA and the rights to a Free and Appropriate Public Education for students with disabilities. These issues are core to the concerns of people with disabilities, but as is always the case, they have impact on millions of other people, too - especially individuals who are most vulnerable. People living in poverty, children, the working poor, and many others will be hurt by these policy moves as well.

So I am deeply happy about the Women's March. I am privileged and downright joyful that I had the company of so many people who care so deeply about humanity today. As for me, I will continue first to seek ways to show others how people with significant disabilities need programs currently being threatened to live, to function, to allow their families to function, and to make it possible for them to contribute to our communities, states and country. In so doing, I aim not to be in conflict with other activists, but to add value to their efforts for justice. My Lord and Savior tells me to Love Mercy. Seek Justice. And walk humbly with my Lord. For my son and for my faith, and for the lives of so many others, that's #WhyIWalk.

I love someone who has no voice. For him, for our family, and for many families like ours, I will rally. I will write. I will fight. I have a voice. I have not just a right, but a clear obligation, to use it.

Health care and an invitation to Rep. Todd Rokita

I posted on Facebook about my heartfelt letter to Rep. Todd Rokita about the importance of the ACA and Medicaid to my child and so many others, and quoted his canned response about his more than 60 attempts to get rid of "Obamacare" and his opinions against the ACA. I sent this response to him today:

Dear Rep. Rokita,

It was disheartening to me to receive a form letter boasting about your more than 60 efforts to repeal, delay or defund the Affordable Care Act after I wrote you a heartfelt letter about the damage this action will do to my vulnerable son with disabilities and so many families who I serve in the my work with children with special health care needs and their families. I feel as my representative, you should provide a personalized response addressing my fears and concerns. I also feel that since you also have a child with a disability, we might share common experiences and can learn from one another. A canned letter response thwarts any opportunity for relationship or learning.

I respect your right to your opinions, but I question your facts. I have a master's degree in public health, am a published author on Maternal Child Health, and am a certified Indiana health care navigator. The ACA reflects efforts previously made by Republicans, and it honors free market options as well as providing government options. Last year, the cost of premiums went up, as they have every year for the past five decades, but they went up less than any year in the past 20. The tax increase only affects people making more than $200,000 a year or families making more than $250,000 a year, and last I checked, that's not the middle class. Tax increases also vary widely from state to state, with the highest increases in states who did not choose to expand Medicaid, while 10 states that expanded Medicaid saw increases of 7 percent or less. As many as 2.5 million Americans would be eligible for premium tax credits in a marketplace plan, meaning these folks, based on income, pay a premium far more affordable than most of us pay through our employers.

The ACA made my son insurable with his pre-existing conditions. It made our lifetime maximum go away -- before the ACA, Kyle would have lost coverage by his teens and been completely uninsurable in any other plan. In addition, Medicaid funding make it possible for him to have a waiver and for us, his parents, to be able to work, pay taxes, and contribute to his future and our community. Before Medicaid, we averaged $13,000 a year in out-of-pocket medical expenses after our employer insurance, which paid at levels that, without the ACA, would have reached a lifetime maximum and left Kyle with no insurance by now. Without the ACA, any other insurance plan would be out of the question due to his pre-existing conditions. Without Medicaid dollars for a waiver, I would be unemployed and then eligible for all sorts of public assistance. I prefer to have these basic safeguards available at a modest cost for my vulnerable son, so that his dad and I can be employed and over income for any other assistance.

I respectfully request a meeting with you and your staff member who covers health issues. I will meet with you and bring 2-3 other parents of children with special health care needs. You can learn a little bit about our lives, we can learn about you and your son, and we can help each other learn about our various perspectives on these issues and find where we can reach middle ground. We're all Hoosiers. We're all Americans. Please don't make this about political ideologies. It's about people...families...and for me, a wonderful boy named Kyle.

Thank you,

Beth A. DeHoff, MPH