Medicaid means more than health care for people with disabilities. It also means
the freedom to live at home with support, to work, and to participate in
community life. Threats to the current Medicaid system could change all this.
Here's why. My name is Alana Terrio. I'm 50 years old. I live in Berkeley,
California. In order for me to live here independently, I've been using home care
assistance provided by the State of California through a Medicaid program.
I'm actually on two different programs. 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 program and I get more hours from them, which
covers me up to 24 hours if I need it. My disability is spinal muscular
atrophy. It affects all the muscles in my body, including my breathing, but with
the care that I have, I am able to work and I'm working since I was 18 years old.
Right now I have a job part-time 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 morning, they help me remove my ventilator that I use at night to 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 for my ventilator back home. They assist me with
my taking medications, etc. If I were to lose any of the services that I have
right now, probably the first tassel tea would be my job. So without the hours I
would not be able to work. If these attendant hours were taking away all
together, I would have no semblance of a normal life. I would be pretty quickly
put into an acute care hospital so that nurses would be available to handle my
ventilator and my ID and my calculator. 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 and we go to the movies and we make friends and we do a couple
of things with our friends who are couples and we spend money out in the
community. We go on vacations. We get passionate about 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 that they 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. People like Alana could lose life-saving Medicaid home care
if Congress repeals the ACA or changes the program to block grants or CAHPS
care. Act now. Tell your members of Congress no changes to the ACA or a
Medicaid. 202-224-3121
