Friday, March 30, 2012

What the Affordable Care Act really means to me

Two years ago, I became an advocate. I called my legislator, Representative Ron Kind, to urge him to vote for the Affordable Care Act and then sent him a thank you note after he voted in support of this massive piece of legislation. I wrote that letter as a mom, an exhausted, terrified mother who couldn't bear the thought of her son being excluded from a family insurance plan based on his medical condition.

The story behind the letter:
We switched insurance providers between December 2009 and January 2010 and the new insurer denied us coverage because we were still covered under the old insurer, even though we had paid premiums, completed paperwork, etc. to enroll with my employer's plan as directed. I didn't formally sign the first insurer's termination of coverage document though, I just called them and told them, and at the time they said that was enough notice. So with a 1 year old who was still struggling with intermittant seizures, who was receiving weekly OT and PT, the thought of a paperwork snafu giving our new insurance provider an "out" so they didn't have to cover any of Henry's care seemed completely outragous, overwhelming, confusing, just wrong. That was a "what if" though, that didn't happen. It was day 17 of my first 30 days of coverage when we realized the paperwork wasn't in order and we Fed Ex-ed original documents to Dallas to make sure that they were received in the "window" and they sent back the termination agreement and everything was in place by day 23. No problem, really. A week to spare.  But the chaos of that time, that feeling of helplessness... not something I'd like to recreate. And the idea that a piece of legislation would take that feeling off the table, forever? Definitely something worth writing about.

The letter: (posted on Ron Kind's facebook wall with the above image)
"My son had a stroke, before he was even born. He wanted to personally thank you for passing this historic healthcare bill, but he's 13 months old, and between juggling neurologists, OT, PT and speech therapy, he hasn't found the time. Let me be his voice. As a voter, as your constituent, as a mother, Thank you."
Then... Ron Kind's campaign called and asked to talk to us. We met Rep. Kind, met his lovely parents who hosted us as we filmed a brief commercial in their backyard. We named a rooster "Ronbo" and shed tears when it was time to butcher. It was a fun adventure, that in our minds, seemed over.  But it wasn't. 
Because then the commercial rolled out, and Henry's face was plastered on banner ads all across the internet. People stopped me in the Piggly Wiggly, the Cenex, the Shell, at church, the Hometown grocery store, the Shed... I don't know what I expected, a smile and a nod maybe? But what I got was questions. Questions from everyone about the ACA, and how it affected our family, and how it was being funded and if it would solve our health care issues and how it would impact Medicare, Social Security, and what about small business owners... And that's when I started really working. I engaged in these conversations, trying to inform more than anything, there was so much misinformation and fear surrounding it, just having a conversation with a normal person went a long way. 
Those conversations, that involvement, put us on the radar of our county's birth to three program and Aaron quickly agreed to sit on their Parent Advisory council. From there we connected with the state's B-3 services and enrolled in their "Parents as Leaders" program. Those PALs retreats in 2010 and 2011 introduced us to organizations like Disability Rights Wisconsin and the Bureau for People with Developmental Disabilities, and better yet, connected us with other parents of special needs children who have quickly become some of our strongest friends. It was at a PALS retreat where this video came across my facebook feed:
This is when I realized that Representative Kind was still fighting for us, still working for us, so why did I so quickly move on?  When his campaign contacted us recently, two years after the ACA act had passed and asked to reprise our story I quickly said yes. Yes. YES. Well, Yes, BUT. Our story has changed you see... We are forever grateful for the ACA and for elected officials that put the needs of their constituents over big business. That won't change. But, through all we have been through in the past three years, I no longer feel helpless, overwhelmed, or scared when I think about our future.
I feel empowered.
The ACA provided us with a safety net that we hope we never have to use. But having that safety net in place has spurred us to create other nets along the way. Higher up "nets" (as long as we're using that analogy) so we don't have to fall as far. In the state of Wisconsin, Developmental therapy isn't covered by private insurers. There was an autism mandate that passed in 2009, so autism spectrum is covered, but so many other services for so many other conditions just aren't. I've met with our insurance providers board, to urge them to reconsider. They denied that request. Then I met with our state representative, Howard Marklein, to look at the possibility of moving forward with a Birth to Three mandate, a state mandate that would require insurance providers to cover developmental services for children who fall under the B-3 umbrella. While he and I have very different motivations, he gave me a forum to speak and his aide, Crystal Lee has followed up with me over the past year and continued that conversation.  Locally, I've created a program at our library, inclusive for kids of all abilities, and wrote a grant proposal and got that program funded. We're looking forward to reprising it this summer. I joined the Friends of the Library board, and engage with my community differently than I think I ever would have if not for everything that we've been through.
And most of all, I'm grateful. The Affordable Care Act really did change my life, but in a really weird way. Before Henry was born I lived in my own corner of the world, doing my own thing, and just happy as can be. Henry forced me out of that, requiring strangers to come into my home for weekly therapy, telling and retelling our story countless times, to more strangers as we networked with doctors, therapists, parents, neighbors... saying "yes" to help when we ordinarily would have said "no thank you". And then being the face of this campaign, the voice of the "mom", not only on the television but in the grocery store, school, gas station. And being ok with that. And leveraging that experience to give more back to my community, to bring more opportunities for kids of all abilities to my little village. 
So as the ACA turns two, and Rep. Kind's facebook page has status updates that include:
To Beth healthcare reform is more than just the numbers. She knows we have to find a way for government to be both fiscally AND socially responsible. It’s about being a neighbor and lending a hand when people are in need -- that's the Wisconsin way.
Beth’s experience with Henry led her to look beyond her own circumstances. She realized that everybody is going to need help at some point.
It's interesting to hear my experience summed up in a limited character alottment (as you can tell by the length of this post, it's a pretty foreign concept), but sure.. that's the gist of it. I don't think the ACA is perfect. I think it's a small first step. Back to the tightrope analogy, I think it's putting the lowest net in place in case everything else you try fails so you don't go smashing to the ground. But it's up to us to keep those other nets secured. To pay your insurance premiums and in return they will cover your medical needs, even the ones you had before you met them. To support and enrich our own communities, to rely on each other first, to give a voice to everyone and learn from those shared experiences. To buy local because supporting Dwayne or Judy or Frank, is more important than saving a buck... and to be in a strong enough financial position to support that decision.
But most of all, the experience I've had with Representative Kind and the Affordable Care Act has reinforced wholeheartedly that I am only as alone as I want to be. There's something amazing and special about small town living, especially in western Wisconsin. Sharing our story with our friends and neighbors opened the door to them sharing their story with us, and knowing each other's stories, and working together to make those stories better... for me, that's what it's all about.  
Well, that and Henry... of course! :o) 
Hug your kids/partner/pet and have a great day!


  1. Beth. Thank you for this amazing post. You have been such a light for me as I try and make my way through the darkness surrounding Charlie's stroke / CP / Hemiplegia situation. Thank you so much.

    Sarah Greenman

  2. And the dimples! You forgot the dimples! They are gifts and we have only experienced the tip of what these kiddos have in store for us and all in their path!

  3. Sarah, I feel like I've known you forever and we haven't even met. Yet. We haven't met yet. Changing the world, that's just what us moms do, right? And in that never ending challenge, we best stick together!
    Take care,

  4. This is a wonderful tribute to the very best in all of us. Beth's comments do a beautiful job of pointing out that individual effort is what America was founded on and assistance by others and organizations is what makes us great. A lot of this has been submerged by the greed of corporations to return equity to shareholders--a lie to the fact that these shareholders are also INDIVIDUALS who need help achieving the American Dream.

  5. So proud of you and your family, Beth. Keep it up!