Meet Gus, our son.
Our little man and his mom.
He’s 30. He laughs heartily when I sing to him in a Louis Armstrong voice. He loves music, especially stuff that has unusual rhythms—Prince is a favorite. He doesn’t seem to be able to see very well straight ahead, but he manages with his peripheral vision. And he knows Beth’s voice and my bearded face.
He can’t talk. He can kinda’ walk with assistance. And he wears diapers. He lives in a group home in Watertown, Wisconsin. It’s operated by Bethesda Lutheran Communities.
Gus was born with a genetic anomaly called trisomy 12-p. Pretty rare. The only literature we found at the time said he was unlikely to reach age 30. But he did. I’m proud of him. And of us. And of my fellow Americans who made it possible.
By the time Gus reached age 16 he was mobile and strong enough for it to be a safety issue for him and for us. We were lucky to find Bethesda. It’s a religiously affiliated non-profit. It gets donations. But it can’t do what it does without help from the broader community—like Medicaid and other programs.
Gus needs help with everything. And he gets it. From salt-of-the-earth-people who make, essentially, the minimum wage. Medicaid helps pay for that. But barely enough. Bethesda is in the midst of financial struggles, as are lots of such agencies across the country.
Gus gets medical care from providers who accept Medicaid. It’s hard finding providers in some fields—like dentistry—but overall, compared to a couple of his housemates, he’s fortunate to not need a lot of specialists’ care.
I want you to trust me on this. I’m a pretty smart person. I love my son. I’ve watched closely. No one’s getting rich off of others’ labors in this equation.
Gus is served by a Wisconsin program called Family Care, which is essentially a kind of HMO for people like him. Family Care administers Medicaid funds and pays the group home operators, and oversees the operators, and looks after Gus’ care, and communicates with us about his health and any behavioral issues. Family Care does a very good job.
Which is great—but we’re lucky to have Bethesda looking out after him because they’re on it. We always hear pronto from Sarah, who’s a lead at the home where he lives, if anything is amiss with Gus.
Beth and I have always worked. We’ve paid a lot of taxes. But even if we were totally frugal, we couldn’t cover the cost of Gus’ care. And though we’re both sort of healthy, we haven’t been able to provide that care directly for a long while now.
I’ve worked at non-profits, at government-supported institutions of higher education, at startups, and at Fortune 500 companies. I’m here to tell you, they’re all a mess. They’re a collection of humans being humanly clumsy. They all rely on enough people trying to do the right thing. If not enough of those people are in the right places at the right time trying to do the right thing, failures ensue. Government. Private sector. Doesn’t matter.
There are worthwhile discussions to be had about the devils in the details of programs like Medicaid, Medicare, etc. I’m not a rigid ideologue. Everything can work better than it does.
But we’re not having that discussion anymore.
Awhile back I wrote a post about how when bad things happen you can feel pretty alone. And about the value of understanding that you’re not.
Right now I’m feeling pretty alone. So are a boatload of other people.
I hope you’ll speak up and prove us wrong.
Thank you for putting a real name and face to all this craziness.
And you are definitely not alone! We are all here in a circle to catch you if you tip over…even a little bit.
I made a couple calls this morning, and that was before I saw your post, Mike. As a former special educator, I hope you know you’re not alone. I hope others will join me in calling and emailing and shouting often about this dangerous and thoughtless bill.
Well said. I am speaking up to Roskam on a regular basis.
Thank you Mike. I thought your column expressed what many of us feel lately – alone in a country that puts money ahead of everything. This was always true to some extent but now it is showing up in places I thought were protected by decency and common sense. By the way your columns are getting better all the time. Thanks.
Thank you, Mike. After listening to public radio over the weekend, it appears that Medicaid is the real story of this new bill and the word is finally getting out. I hear some Republican Governor are alarmed about it, insurance companies and hospitals are alarmed about it. Let’s hope the story of Medicaid grows to be huge.
Thanks everyone. It’s not black and white, and lord knows the ACA has flaws, but this is a bad bill.
This article really hits home. Well done, Mike. It is difficult to believe that we all have to make calls to tell politicians about the real life impact, and to beg that they consider people’s lives. Maybe the release of the CBO report will wake some people up.
Mike, this was beautifully written. Not only do we need to convince our politicians, but our friends and neighbors who have been convinced that Obamacare is the enemy.
Would you object to me sharing your story on my facebook?
Thanks Mike. I think folks get more active when they realize they know personally some of the 22 million Americans who risk losing their insurance. I appreciate your always insightful writing.
Thanks Judy. And Robin, share away.
“I’m here to tell you, it’s all a mess.” Made me laugh. So true! I have also worked in many different industries, including nonprofit. The government is the worst of all. The greed the GOP breathes is smothering everyone else. I hope that Gus remains in the good care of Bethesda Lutheran, and you don’t have to worry about alternatives. Greed is evil and this essay is just one dot in the ocean of need.
Mike – and Beth – I am fighting for you. Mostly on the street shouting with the hundreds of others who are fighting for you. I admire your courage. “Never the less, she persisted” and we will too.
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