Beginning in 2017, there has been an unprecedented assault on Medicaid, the health care program for the most vulnerable Americans, including low-income children and families, children and adults with disabilities, pregnant women, children in the foster care system, and senior citizens.

As funding for the Children’s Health Insurance Program (CHIP) and other critical health programs hung in the balance last year, the GOP-controlled Congress spent the majority of the legislative calendar debating a proposed budget, measures to repeal the Affordable Care Act, and multiple other legislative proposals, all of which would have altered eligibility and drastically cut funding for Medicaid, some by more than $800 billion.

A federal-state partnership over which states have considerable discretion, Medicaid can be altered in numerous ways: through federal and state legislative proposals; regulatory changes; and state Medicaid waiver proposals such as recent requests, and the Trump Administration’s guidance, to include work requirements as a condition of eligibility for Medicaid. These changes would fundamentally  decrease coverage and access to care by vulnerable people.

One positive change driven by the current political environment is the elevation of powerful testimonies of those who experience Medicaid firsthand – parents of children, and the children themselves – who need the health care program due to income, disabilities or special health care needs.

They have rightfully gained a potent voice in Washington with a message that hits home in a way few others can. They also illustrate the many essential ways in which Medicaid is a lifeline for vulnerable children and families. As just one example, Medicaid can also be a secondary payer for children with disabilities or other special health care needs, through Medicaid waivers such as the “Katie Beckett” waiver, created in 1981 by the Reagan Administration.

Just how important is that lifeline? I recently spoke with Anna Kruk Corbin, mother of Henry and Jackson, to find out. Both her children have complex medical needs and are covered by Medicaid.  In addition to speaking out individually, Anna advocates with the Little Lobbyists and the Pennsylvania Health Access Network.

AC: Both Jackson (age 12) and Henry (age 9) are seriously affected by Noonan Syndrome, a disorder that has many symptoms, including short stature, heart defects, bleeding disorders, lowered immunity, and other problems. As is very common in people with Noonan Syndrome, both boys also have Von Willebrand Disease, a bleeding disorder that creates problems with blood clotting.

MM:  What does this mean for everyday life for the boys, and for you and your husband (Michael Corbin) as parents?

AC: The boys bruise easily and they bleed easily. Bleeding cause serious problems, as do minor “bumps,” that might mean nothing for another child.

A bump on the head for Henry or Jackson means a trip to the emergency room to check for intracranial bleeds. Everyday sickness can become extremely dangerous.

At nineteen months, Henry suffered a gastrointestinal bleed that required surgery. Since that time, he has had gastroparesis and can’t digest food the way he is supposed to. Vomiting is a daily occurrence; he sometimes vomits in his sleep.

MM: What about school?

AC: I now homeschool the boys. We tried school for a few years, but you can’t keep a child in school if they are vomiting every day. The school calls you to pick them up.

The cold and flu season used to be horrible. If someone had something at school, they caught it. We need to keep them somewhat “quarantined” during this time of year.

I sometimes call them “my little ticking time bombs.” We’ve learned to look for warning signs. You never know when something is going to be a problem that has never been a problem before.

MM: How does their health care coverage work?

AC: My husband makes a decent living, and we never considered Medicaid, never thought the boys would qualify. When they were diagnosed, the doctors sent us to Johns Hopkins (Baltimore) for treatment. The doctors’ visits, treatments, hospitalizations – just the medications alone (upwards of $2,400 a month) – were so expensive, and we had enormous debt. We were approaching bankruptcy. Then, in 2012, someone told us about the Katie Beckett Medicaid waiver in PA. We hadn’t known about it. We applied and in 3 weeks the kids were covered. We could not believe it.

Our private plan is billed first, and Medicaid is the secondary coverage. There are so many things our private plan does not cover or does not fully reimburse. My husband’s income could double – and we’d still need Medicaid. With medical bills approaching thousands of dollars a month, we would not be able to manage. I don’t see how any family could.

Without Medicaid, we would surely have lost our home.

MM: Did you ever think about working for additional income?

AC: My husband and I talked about many ways we could afford our sons’ care. We looked at the possibility of me working, but the boys need me during the day for schooling and for care, so it would have to be nights. It would simply be impossible for me to work nights and care for them during the day or to afford childcare from someone who had the medical skills to care for them.

Beginning in January 2017, Corbin began advocating for Medicaid as attacks upon the health care program accelerated in Congress.

MM: What is it like as a mother advocating for Medicaid in PA and on Capitol Hill?

AC: One thing that has surprised me is how much stigma there is. People don’t want to go on Medicaid and if they do have to apply, they don’t want other people to know. It is if they are doing something “wrong.” One man told me, ‘I’m sorry to hear what’s going on with your children, but I don’t believe in government assistance.’ It turned out his child was covered by the PA Katie Beckett waiver, too, and he didn’t know it was Medicaid. He thought it was just a state “insurance” program.

Wanting to take care of your children is not something that anyone should ever be ashamed of doing.

Sharing our story is the only way people are going to understand this. Some people talk about Medicaid as a “handout” instead of what it really is. I love it when people ask me questions, I welcome them. I’m so happy to educate people so they don’t make assumptions and spread stigma about Medicaid.

I also know what it’s like to be on private insurance alone, and to have Medicaid coverage. We would not have survived financially without Medicaid.

MM: With all you have had to learn about Medicaid and waivers, what do you think about state proposals such as work requirements and other Medicaid waivers?

AC: My children are covered by a Medicaid waiver, so I absolutely see anything being proposed as a potential threat. First of all, if one of my boys could not work as an adult, I’m not sure if his condition would be recognized as an exception to any work requirement. My children having access to affordable health care is crucial to their survival. Nothing can stand in the way of that.

Another concern in terms of the work requirements is, what’s the next step? Right now they are attacking ‘able-bodied adults.’ Who’s next? The kids on CHIP? The kids on [Medicaid] waivers? Then the elderly? Once they start, I’m afraid it will be a domino effect. Where will it end?

As Corbin has continued to advocate for Medicaid, she has had many opportunities to educate diverse groups of advocates, experts, state and federal legislators, and government administrators.

Last November, she was invited to represent PA at the annual National Association of Medicaid Directors (NAMD) Conference in Washington, D.C. After speaking on a plenary panel of consumers, she fielded multiple comments from state Medicaid directors who were visibly moved by her family’s experience. She notes that several came up to her, some in tears, saying “we had no idea what families are going through.” She says their feedback was so positive and the simple fact was they just didn’t know what families were experiencing.

This year, Senator Bob Casey invited her to be his guest at the State of the Union address on January 30, 2018, showing his commitment to Medicaid and the critical need it serves for vulnerable children and families.

MM: How do you think your family’s experience, and your advocacy, has changed you as a mother and as a person?

AC: My husband and I have talked about this many times. We honestly don’t know what kind of parents we would have been if we hadn’t had children with complex medical needs. We don’t think it makes us “better” parents, but maybe it has made us appreciate things more.

All parents mark milestones for their children and we are no different. But our milestones are different in some cases. And maybe our appreciation for them is a lot greater, because we’ve learned to appreciate very single tiny moment that, for us, is a big moment.

Just this week, we were out to dinner and Jackson ordered from the adult menu for the very first time. He is 12 years old and wanted to have shrimp, and he did. This was the kid who at one time was considered to be a “failure to thrive” baby. This was one of our big moments.

A few years ago, I was standing in line at the post office with both kids, and a woman behind me said, as many people often say to young parents, ‘enjoy every moment.’ I turned around to her, smiled, and said, “I do.”