Dear legislators, please save Medicaid

My message today about Medicaid to Rep. Rokita, Sen. Donnelly and Sen. Young:

My son has multiple disabilities and depends on a Medicaid waiver to live at home, get the health care he needs, and the ability to participate in school and community. This waiver also gets him nursing services that allow us, his parents, to work.  I ask that Sen. Donnelly works to advocate for Medicaid not being limited by a block grant or capped spending. I have some thoughts to share on why this is not only the right thing to do, but the fiscally responsible thing to do as well.

The parents and children in the Medicaid expansion represent a small amount of cost and a small percentage of the population. Cutting there will not save much. People with disabilities who depend on Medicaid waivers may seem to take a lot of money to maintain, but this is a small percentage of what it would cost if they lost waiver services and Medicaid coverage and were then institutionalized, as many would need to be. Nursing homes are much more expensive than home and community based waivers. In addition, there are opportunities for cost containment with the sick and disabled (like my son, by the way) through case management and care coordination, that helps individuals and families find ways to communicate their plans of care, medications and services from all of their medical and community providers to all their other medical and community providers. This improves life for the individuals and families, especially when the care coordination is family-centered, and reduces unnecessary and duplicative spending that can be a common problem with individuals involved in multiple systems of care.

In addition, I found these excellent questions that anyone, including legislators, should ponder when trying to decide what to do with Medicaid.

Medicaid is the nation’s largest health insurer for children. Thirty-three million children rely on Medicaid/CHIP for health care coverage. How many of them will lose their guarantee of coverage under the proposal to cap federal Medicaid funding to states?

Medicaid is the nation’s largest health insurer for kids with disabilities or other special health care needs, covering 43% of them. How will capping federal Medicaid payments to states affect their guarantee of coverage? How would the loss of coverage affect their health and their families’ economic security? I've already told you how devastating it would be to our family.

Medicaid is the nation’s largest insurer for births, covering about 48% of newborns to ensure a healthy delivery and strong start during their critical first year of life. If federal Medicaid payments to states are capped, will pregnant women and new mothers and their babies still have a guarantee of coverage? If not, how will this affect infant mortality?

Medicaid offers a child-centered benefit package (EPSDT) that covers all of the screenings and treatments recommended by pediatricians. If federal Medicaid payments to the states are capped, what will happen to these benefits and the children whom rely on them for their healthy development?

If the federal government caps Medicaid payments to states, will children covered by Medicaid be able to keep their doctors and continue to be cared for by their local hospitals?
Medicaid provides the lion’s share of federal funding flowing into state treasuries. How much will capping federal payments to states cut from my state’s federal revenues? How much will those cuts limit my state’s ability to keep children and families covered?

How will a federal Medicaid funding cap impact centers of excellence such as children’s hospitals, teaching hospitals, or specialty providers like the Cleveland Clinic or Mayo Clinic? Or Riley Hospital for Children in Indiana? Will they be able to continue serving as community resources to children and families?

Thanks for your work on behalf of Hoosiers. Please keep in mind my son in family, and the many families like ours, when you think about who you represent.

Beth DeHoff
Plainfield, IN

My video message and transcript for Rep. Todd Rokita - and any representative or senator - on access to health care and coverage

I spoke about health care and coverage, the Affordable Care Act and Medicaid, and my hopes and concerns about my Congressman Todd Rokita, last night at the #resistancerecess Avon Town Hall with or without Todd Rokita. I've put in a link to the speech and included a transcript for it below. Please share your voice for the needs for access to care and coverage for vulnerable citizens...and every citizen.

https://www.facebook.com/beth.dehoff/videos/10154378407631769/

Hi. I’m Beth DeHoff, and I live in Plainfield. I have an MPH, which is a master’s degree in public health, and I’ve spent the last many years studying maternal child health policy and serving children with special health care needs and disabilities and their families. Even more importantly to me, I’m the mother of one of those children myself. The Affordable Care Act, and the Medicaid waiver for people with disabilities, has saved my son’s life and our family’s livelihood – and the same is true for many of the families I serve.

Todd Rokita should probably know me. I’ve written to him, emailed him, called him more often than I ever called my mother in a month’s time, and have even made him the subject of blog posts, tweets and Facebook posts. I’ve had lunch with his Danville director, who I’m sure is now not regretting at all his invitation for me to email him anytime. Thanks, Joe.

I thought health care for vulnerable citizens would be a common concern for us, given that Todd and I both have children with special health care needs. My son has Down syndrome, autism and is a leukemia survivor; his son has Angelman’s Syndrome. But my pleas to him asking him not to do a wholesale repeal of the Affordable Care Act and not to block grant Medicaid have been answered by form letters bragging about his 60-plus attempts to repeal, replace or defund the ACA. He has not yet responded to the untenable situation these actions place my son and family in. His regional director asked me to show how we can protect my son and other vulnerable people while saving money. I’ve sent him some ideas about that. I’ve also sent him the idea that there are many places to save money, and I find it distressing that the first place the congressman goes is the health and life of our most vulnerable citizens.

So here I am, a rather unlikely activist brought up in Republican home, trying to help the rest of the world understand what the Congressman seemingly cannot. I want as many people as possible to consider the human consequences of repealing the Affordable Care Act without appropriate protections of its benefits and ways to pay for them, and of block granting Medicaid, for vulnerable Hoosiers with disabilities and their families – like my son and our family.

The ACA made my son Kyle insurable with his pre-existing conditions. It made our lifetime maximum coverage go away -- before the ACA, Kyle would have lost coverage by his teens and been completely uninsurable in any other plan. In addition, his Medicaid waiver allows him to have important secondary coverage and allows 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 pretty well. Without the ACA, Kyle would have been kicked off our insurance by now, and 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 – because there would be no nurse available for him while I work -- and then we’d be eligible for all sorts of public assistance – not the outcome most conservatives – or most families – want.  My questions for Rep. Rokita are simple – how do you plan to protect health care access and affordability for sick, disabled, elderly and poor Hoosiers? If you fail to do this, how do you expect to deal with the added expenses of the stress on public programs, the rise in public and private health insurance premiums, and rising health care costs as hospitals struggle to again manage the uninsured and very sick who show up in their emergency rooms?

While we’re waiting for him to answer those questions, here’s some things we can do.

1. Don’t argue to keep the ACA the same. Ask for it to cover more people, not less. Ask for it to keep the protections for people with pre-existing conditions. Ask for it to not kick people off coverage after they hit a maximum. Ask it not to charge different rates for women, the disabled, or older people. These messages are working, and slowing down the rush to appeal. Keep it up.

2. Fight against block grants and capped funding for Medicaid. A Medicaid block grant will slash the amount of federal dollars given to Indiana for Medicaid and leave it up to the state for how they spend their reduced budget. This imperils people who have no voice, like my son. Be their voice.

3. Communicate clearly that the health savings account idea they are so excited about is not a solution. How are poor people, people with disabilities who aren’t given the opportunity for a living wage, and senior citizens in nursing homes supposed to contribute to a health savings account? For that matter, how can our working class families who work 2 or more jobs and still struggle to pay for rent and food supposed to kick in their “fair share” to their health savings account? Even today, health savings accounts only work for the employed and well – have a catastrophic illness, or even a visit to the emergency room, and your health savings account is woefully inadequate unless you have a heck of a lot of expendable income.

My biggest concern about Congressman Rokita is that he doesn’t seem to understand the lives of real people in his district. When I communicated to his director that most parents of children with disabilities are facing significant financial struggles and resulting unmet medical needs, he said “yeah, I’m sure that’s true for some families.” Not some. Most. That’s well-established and evidence-based.

Based on my communication thus far with the Congressman and his staff, I truly believe they just don’t get it. It’s up to us to try to make them get it. While constantly reaching out to the Congressman is up to us, it’s up to him and his staff to decide whether they care. And if they do not, it’s up to us to resist – and persist. Thank you.

Too much advocacy is still not enough

I have posted a lot of scary stuff for people with disabilities lately. You may feel it's too much, that I worry too much, that I should trust God. I do trust God. In the larger scheme of things we are all right. But here's a little analogy to help you understand why I'm upset, and why I share these things and beg you to call your senators and representatives.

Suppose your child, because of who he/she is (a person who wears glasses, an artist, a football player, etc.), is being told he won't be able to have health insurance, or if he will, it will be inadequate and more than you can afford, and he needs that insurance to stay alive. Suppose her education is about to be in the hands of people who don't know how to serve her and seem to wish they didn't have to. Then suppose in one day, on top of these things, you learn that your government is trying to ensure that he won't be able to work and will have no source of income for the rest of his life, and that no people like her from other countries will be able to come in and make our country worse because it gets more people like her.

So that's why I share the news that is threatening my child and denigrating all people with disabilities. That is why I won't stop. It doesn't mean I'm not enjoying my life, my work, my family. I am. But it does mean that I feel my family is under attack by my own government. And it does mean that I really do need your help. Please call your senators and representative, several times if possible, and ask them to not repeal critical ACA provisions, not to block grant or cut Medicaid in any way, not to cut SSI for people with disabilities, and not to prevent people with disabilities from immigrating to our country. Thank you.

Reflections on a conversation with my congressman's staff

I was describing the devastating effects that blanket repeal of the ACA and block granting Medicaid would have on my family and son to my congressman's staff member today. We carry insurance on our son. Medicaid is only secondary. But it allows for us not to be bankrupted by co-pays, deductibles and uncovered expenses as we nearly were before Kyle got his waiver. Likewise, without the ACA, Kyle hits his lifetime max quickly and loses insurance, and can't find other insurance due to significant pre-existing conditions. A block grant of Medicaid cuts funding; if he loses his Medicaid waiver, he loses his nursing care after school and one of us, his parents, loses our job to care for him.

I told this staff member all this and told him most families of children of any age with disabilities depend on these programs to function, to work, and to not depend on welfare, but that most of us simply cannot afford to lose these supports and stay afloat. He said there are probably some families in that position. I said no, not some, most. I said unless you happen to have a lot of money going into your life with your child with disabilities, you cannot make it without supports. Cutting these programs threatens kids' lives and families' livelihood.

My congressman's staff member said my congressman, Todd Rokita, is primarily concerned with controlling the federal deficit and needs to see how health care can address these needs while saving money or remaining budget neutral. The thing is, all these folks with health care needs without insurance will have desperate families, showing up at ERs without insurance or the means to pay. Health care costs will rise. Premiums will rise. Programs like food stamps and WIC will see more clients, more demand.

I can make the fiscal arguments. I can remain open to better solutions. I can not care what they call it or who takes credit for it if they can figure out a truly "better way." I sincerely hope Rep. Rokita and his colleagues can be open to the additional information I'll send, and truly work for a solution that doesn't tear down but preserves and even builds up public health. If so, I'm happy to help and report their good work. What I cannot do is morally justify seeking debt reduction through cuts on health care and coverage, especially not on the backs of children, youth and adults with disabilities, on the backs of senior citizens in long-term care, or on the backs of pregnant women in poverty. Maybe it's easier because these people largely lack a voice. But that's wrong, plain and simple. And no matter the obstacles, I will not give up helping to give my son and others a voice, and to remind my elected officials of the real lives from which they often are so far removed, and the real consequences of their decisions on their most vulnerable constituents.

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