Max Lewis and Leslie Anderson: 'Cry for Help or Die'

Jun 30, 2017

Max Lewis is a lawyer in Columbia. He is also quadriplegic and uses a program called Consumer Directed Services to hire in-home help with personal care. He sat down with Leslie Anderson, the director of policy and advocacy for Services for Independent Living.

U.S. Sens. Roy Blunt and Claire McCaskill, who issued a rare joint news release a few days ago to declare, in effect, that they’re wild about Harry S. Truman and optimistic his statue will soon bump Blair’s.

Starting July 1, though, the state will only pay up to 60 percent of what it would cost to live in a nursing home. There are a very limited amount of waivers that would allow people to keep their full care, but these make up for a tiny fraction of the estimated 8,800 Missourians who need this kind of care. 

For the rest, these changes may mean getting fewer hours of assistance or ending up in a nursing home.

Missouri Health Talks gathers Missourians’ stories of access to healthcare in their own words. You can view more conversations at missourihealthtalks.org.  

Max Lewis: I get about 6 hours of attendant care a day, slightly over that, and those 6 hours are absolutely necessary for my functioning. 

I used to have to worry whether or not I was going to get up in the morning. Whether or not I was going to make it to class when I was in school. Whether or not I was going to make it to a doctor's appointment. I mean, if someone doesn't come, I stay flat on my back without food or water [or the ] necessities to survive.

A lot of times I would have to yell for help. I would lay in bed, and I'd go, "Help!" And that, in fact, happened the first day I moved into Paquin [Towers] with a home healthcare aide agency. They never showed up. 

Max: And at about 9 a.m., I started yelling for help really loud about every ten seconds, and by 10 a.m., that was about every 5 minutes I yelled for help, and then by 11 a.m., I just listened for somebody out in the hall I thought I could hear.

And finally someone up on the next floor heard me. It was a maintenance person. They came down, and they found somebody in the building that was just kind enough to just throw some clothes on me and put me in my wheelchair.

When it comes to the basic necessities of life, I am completely dependent and without that, I would cease to exist. Period. 

Leslie Anderson: So how is all of this changing you as a person? 

Max: Um. Fortunately I believe I may get the independent waiver. If I wasn't going to get the independent waiver, how would that change me as an individual? I don't know. I think I'd be contemplating a nursing home too. 

Even if - I don't know - my future would be largely undetermined come July 1. 

I along with other individuals hopefully are going to get more involved in the process and hopefully speak out about the concerns and the needs for individuals with disabilities. 

Max: It's sort of that cry or die thing. Cry for help or die. That's what it comes down to. I'm lying in the bed again that first morning, and nobody's coming to get me up - so am I gonna start yelling for help or am I just going to lay there and die?