Alana Theriault Transcript

Response to the Repeal and Replace of the Affordable Care Act

(American Health Care Act of 2017)

March 19, 2017

My name is Alana Theriault. I'm 50 years old. I live in Berkeley, California, and in order for me to live here independently, I've been using home care assistants provided by the State of California through a Medicaid program.

I'm actually on two different programs.One hires--one allows me to hire someone for nine hours a day, but because of the severity of my disability I need additional hours so I'm also
on a waiver programwhich covers me up to 24 hours if I need it.

My disability is Spinal Muscular Atrophy. It affects all the muscles in my bodyincluding my breathing, but with the care that I have I am able to work and I've been working since I was 18 years old.

Right now, I have a job part time--um, with the Center for Independent Living. I have anywhere from five to seven home care workers at any given time. They come in in the mornings, they help me remove my ventilator I use at night,they help me bathe and dress and they feed me. I also have them drive me to and from work and assist me at work as I need it. And they put me to bed at night.

They get me out of my chair and prepare me--put my ventilator back on and assist me with um, my taking medications, etc. If I were to lose any of the services that I have right now, probably the first casualty would be my job. So, without the hours I would not be able to work.

If they--if these attendant hours were taken away all together, I would have no semblance of a normal life. I would be pretty quickly be put into an acute care hospital so that nurses would be available to handle my ventilator and my IV and my catheter and--

Right now, I have a partner that I've been dating for 16 years. I've been able to have this amazing normal life where we go out and we date we go to the movies and we make friends and we do couple things with our friends who are couples and--and we spend money out in the community, we go on vacations, we um, get passionate about our--what--what's important to us in our communities. I can have this normal life because I have people around who can facilitate each of those activities.

The idea of cutting these benefits, it's giving me the message thatthey want me to die.

I know I'm expensive. I'm cheaper at home but I'm still expensive. I'm very expensive in an institution and I get the sense that my government would rather that I die. And that's what I'm feeling right now.