This is what democracy looks like
Normally, I’d be writing a Friday Night Lists posts today, but something so extraordinary happened yesterday that I feel compelled to write about that instead. It’s a series of events that has restored a tiny bit of my faith in responsive government, and will have an effect on literally tens of thousands of people who will never know I had a role in it.
A few months ago, I saw an email from TakeAction Minnesota calling for folks to tell their stories about the importance of MinnesotaCare, the low-cost state health insurance option that covers people with incomes between 75 to 250% of Federal Poverty Level, depending on family status. I wrote in with my own story about the failure of care for my fibromyalgia and subsequent suicidal depression that occurred when we first moved to Minnesota two years ago, and how well MinnesotaCare has kept me healthy since it kicked in that fall.
I got a call from one of the healthcare staffers at TakeAction this spring. In the time that had passed, we’d dealt with Connor’s own crisis, and MinnesotaCare was (and is) critical in the solutions that saved his life. They asked if I’d be willing to testify to these things as the government worked to figure out what to do with MinnesotaCare, once (hopefully) the Affordable Care Act kicks in in 2014. Some officials wanted to ensure that eligible communities would move into a Basic Health Plan that’s basically the same, while more conservative influences have been pushing hard to force participants to buy their own private plans on the Insurance Exchanges that will be set up under ACA. Of course, I said yes.
This Thursday, I attended a meeting of the Access government workgroup grappling with these issues. It’s a panel of officials from relevant government bureaus, the Minnesota Legislature, and agencies like Legal Aid and major labor and insurance groups. Here’s what I told them:
“My name is Jessica Banks. My husband, my two young sons, and I are currently enrolled in Minnesota Care. I have experienced life with and without this important program. I am here to tell you today that, without access to Minnesota Care, my health and my life spiraled out of control. I am also here to tell you that our Minnesota Care coverage saved my son’s life.
When we moved to Minnesota from Wisconsin two years ago, we needed to transition our coverage from Badger Care to Minnesota Care. We qualify for state coverage because we make $34,000 a year for a family of four, putting us below the 200% Federal Poverty Level. Neither of our jobs provides health care coverage, and we are unable to afford a private plan. Unfortunately, our transition required a four-month waiting period during which I became very ill.
I have lived with fibromyalgia for the past 13 years. With medication, I can keep it fairly stable. When we moved, I had enough medicine to get me through a few weeks. I had made an appointment with a doctor when I arrived. I planned on paying out of pocket for the visit. That doctor was unwilling to continue my established care and, without insurance, I couldn’t afford to make additional doctors’ visits. Buying the medication without insurance would have cost over $1000 a month. I tried to find low cost alternatives, but I wasn’t successful.
I tapered myself off my meds, trying to make them last as long as I could. It wasn’t enough; I ended up going off all the meds completely. My pain levels spiked. I was couch and bed bound. It was so bad that I couldn’t take care of my kids. As my pain levels rose, a deep depression set in. I ended up in the ER with severe depression and pain. In the hospital, the doctors regulated my drugs and found generic alternatives that I could afford. I received help for the depression, and I began to return to my normal life. Then, our Minnesota Care coverage kicked in and I was able to fully recover.
In February, my nine-year-old son Connor, who has Asperger’s Syndrome, went through a suicidal crisis. Autistics like him find rapid, unpredictable change overwhelming. His baseline of everyday highs and lows crashed and became erratic. Minor problems seemed insurmountable, and we had difficulty protecting him from his wild swings of emotion at home and at school. He hurt himself on several occasions, and he couldn’t see any way out of his sensory and emotional torture.
Our Minnesota Care plan completely covered his evaluation and a partial hospitalization program that quickly and effectively reversed his attempts to kill himself, and changed all of our lives for the better. Because of Minnesota Care, we were able to help him heal, and to recover as a family. He finished the school year back with his friends and teachers at Chelsea Heights. On this Tuesday, we celebrated his 10th birthday, a milestone I honestly doubted we would achieve at times this spring.
I am incredibly grateful for Minnesota Care. I shudder at the thought of what the outcome would have been if we didn’t have access to Connor’s treatment. I am here to ask you to ensure that Minnesota Care families continue to have access to affordable health coverage through an option very similar to Minnesota Care, called the Basic Health Plan. A comprehensive benefit package, including full mental health benefits and affordable prescriptions, is also important to my family’s continued wellbeing.
Without Minnesota Care, my health insurance premiums would increase by over 50 to 70 percent if we had to buy coverage on the Exchange, instead of having Minnesota Care. Without Minnesota Care, Minnesota families like mine, who are already vulnerable, would be exposed to unbearable stresses and burdens. My son and my family were saved by Minnesota Care–please don’t take it away.”
I’d practiced my comments several times, so I thought I had it cold, but when I described Connor’s difficulties, I got choked up. I recovered without messing up my mascara, but I could hear sniffles both in the audience and on the panel. When I told them about celebrating Connor’s birthday, I flipped up the picture frame I’d brought with me to the table and showed them this picture. The sniffles turned into tears.
I had to leave for work shortly after I testified, but the ladies from TakeAction who’d helped me figure out the specifics of my comments and supported me with their presence there that day were very complimentary. A few people thanked me for my courage, which surprised me. What I’d done hadn’t taken any particular courage on my part–I don’t have a filter, so I’ll tell anybody anything. (Exhibit A: This whole damn blog.)
That evening, I got an email from TakeAction, containing a forwarded message from the chairwoman of the committee for me and another woman who testified. She wrote this:
“And then when people spoke, they were eloquent and compelling. They did a fabulous job. Unfortunately, I was not able to thank any of them personally or tell them how great they did. They left before the meeting finished. As a result they may not have realized how important they were to today’s outcome. In agreeing today that the benefit package for the138-200% population should be at least equal to the current MNCare benefit package (and agreeing that we should continue to explore what other benefits should be added [Model Mental Health Benefits were added today]), several task force members referenced things that were said by the people who spoke today. Their statements were also critically important in the task force deciding to recommend that people should pay no premium up to 150% FPG and reduced premiums for people between 150 and 200%
If you have the opportunity, please convey my thanks to everyone who came today and my deep appreciation to those who shared their stories. Please assure them that they influenced the outcome.”
Another panel member emailed me directly to thank me for my testimony, and said that recently it seemed that the panel had been moving backward, away from a solution that would help MinnesotaCare folks, but that our stories contributed directly to these big leaps forward.
Frankly, I’m shocked, and that’s a bit sad, because what happened on Thursday is a perfect demonstration of how democracy is supposed to work. That it’s surprising is a good indicator of how rarely it does. The other panel member wrote, “When the kind of real-life story you brought into the room is missing from the discussion, the discussion often ends up harming consumers and workers.” You’d think that these stories would overcrowd the boardrooms and meeting halls–heavens know everyone’s got them–and make decision-makers emotionally fatigued and jaded. And if these stories can be so powerful, you’d think there’d be a line out the door at every meeting, of people deploying their own experiences to influence government and corporations. But I was thanked for being courageous and powerful, when I felt anything but as I spoke of my life and my loved ones. Telling stories is what my family does, and this didn’t feel any different.
But let me tell you all–your personal stories have immense power. They sway voters, shape policy, spur movement, support progress. That’s the core strength the Minnesota campaign against the anti-marriage amendment has going for it–the entire strategy is based on telling our stories of love and commitment to convince people that marriage matters to everyone.
So tell them. Practice them on me, on your family and friends, on anyone who will listen. Then wait for the discussions where your values lie, where the hinges of your life join with your investments, your neighborhoods, your government, your world. Screw your courage to the sticking point, if that’s what it takes, and raise your hand. Say yes. Fill the silence with your stories.
Then watch the world change around you.