How Health Care Makes Disability a Trap | Op-Docs


America is a place where
people have freedom to move where they want, to
work, to be close to family, and build the life they want. At least that’s how
it’s supposed to be. But people with disabilities
can be denied that freedom and end up in the
disability trap. This is me. I’m a documentary filmmaker. I may have a severe disability,
but I strive to be independent. In the year 2006,
I was diagnosed with multiple sclerosis. My most recent film was
about my life since then. M.S. is a neurological disease
where your white blood cells attack your nerve
endings, separating your brain from your body. Consequently, there’s a
gradual decay in your mobility. The film premiered at the
Sundance Film Festival. Later, one of my dreams came
true when the film won an Emmy. And the winner goes
to “When I Walk.” [applause] This award is dedicated to
all people with disabilities from around the world
that are putting their stories on screen. [applause] Soon after the film premiered,
another of my dreams came true, when my
son Jay was born. What are you going to do today? Yeah. It was the best thing
that ever happened to me. I watched Jay grow up all the
way to his third birthday. And then he was gone. Things were not working out
between his mother and me. As many as 50 percent of couples
where one spouse has a disability end in separation. The other person is more prone
to depression or caregiver burnout. [sobbing] She decided to leave. She found a job far away from my
life in New York City in Texas. I need to find a way
to be closer to my son. Even though it may be
difficult, I need to try. [baby talk] Our life dreams are sometimes
pulled away from us. Good morning. My symptoms have gone
from bad to worse since they’ve been gone. [cat meowing] [distorted voice] I can’t use my
upper body anymore. I can’t even open my hands. And my vision is
extremely blurry. [doorbell ringing] Hey! Good morning, Jason. At least I still
live independently. Yeah, see you tomorrow. I have a rotating crew of carers
covered by New York Medicaid. They have become my friends
and creative collaborators. Every day at 8 p.m., they
have a change in shift. Bye. Goodbye. Why don’t you start, Jason,
by introducing yourself. Living at home allows
me to pursue my dreams — my filmmaking, my
nonprofit, and being a voice for people with disabilities. So this is Sabina. Losing this independence would
be the end of my filmmaking, the end of my activism,
and the end of me. But losing my son has made
the past year and a half impossible. [Skype ringing] Happy birthday. If I’m going to have a real
relationship with my son, I have to move to Texas. My mother comes for a
visit to support and help me gain some perspective. Do you want to live
in Austin, Texas? I would live in Austin, Texas,
if it was OK to live there. It’s a no-brainer. You’ve got to be where
the health care is there. But it’s like — but I
don’t even have a choice. There is no but. But I don’t have a choice. This is your choice. You have a choice to
live independently here, or you return to being
institutionalized. Or be by my son. Do what you love to do,
filming documentaries, because life is short. And then we die anyway. I want to be around
my son, but I need to find the same care
I get here in New York. I start doing research on state
rankings for their Medicaid programs. These rankings are based
on how states treat their people with disabilities. Medicaid support is
completely state-run. State by state, there’s no
consistency for supporting people with disabilities. While New York is in
the top 15 overall, it’s number one specifically
for reaching people with disabilities in need,
while Texas is dead last. I attempt to get
the same health care I get in New York in Texas. [ringing] Yeah, that’s right. I started looking at the
states surrounding Texas. If I can’t live
in Texas, at least I can try and live
in a bordering state. [ringing] [ringing] Oh. The opposite of living
independent at home is living in a nursing home. This is going to hurt a bit. A nursing home would
restrict my daily living. I would have no control of
what time I wanted to leave or what time I went to bed. Anything beyond the
basic necessities would be extinguished. No work, no
independence, no freedom. The health care
situation looks bleak, but there has to be a way. I go to Texas to find out
more about living near my son. I want to cheer for him
after his first soccer goal. I want to watch him
get slide tackled and take him out
for ice cream after so I can explain to them
that sometimes life hurts. But you always have to remember,
you have to pick yourself up. Here we go. I interview others with severe
disabilities living in Texas. I have a traumatic brain injury
caused by a motor vehicle accident. We’re proud to be Texans,
but we’re not necessarily as proud of some of the
shortfalls on programs for disabled people. We were in a car accident — how long ago? 2008. It looked like there
was life in her eyes, but no life in her body. You cannot get 24/7 care. I don’t buy it. I’m not buying this whole
national and state mindset. We represent people with
disabilities, who are generally considered the lowest-income
demographic group in our society. If someone does relocate
to a different state, there should be at least no
interruption of services, if there’s some sort of
smooth continuity of services. So in my situation, to be closer
to my son, who’s in Texas — I live in New York — is there any solution? Or am I just stuck? [sighing] It’s almost like
you’d have to reconfigure your life entirely, Jason. Because I just can’t see
that you could come here, be close to your son, and
find yourself in a position that the only way you
can get the care you need is to go into a nursing home. And you’d find yourself, again,
isolated from the child you want to be close to. I don’t have words to
describe how sad this is. I should be able
to live near my son without giving up my
reason for living. Is that so much to ask? Why should people with
disabilities like mine be forced to make these
impossible choices? But I’m willing to
investigate anything. So with no option left, I check
myself into a nursing home. The staff here
are professionals. They do an O.K. job, but I
have no freedom of movement. One. Two. Three. O.K. No way to do my work or
continue my activism. Good morning! Basically, I’m just
put into storage. Nope. What do you mean? Regular liquids. I just can’t do it. I want to say to you
that I want to be here with you, but I would die a slow death. So … sorry, but I’m not going
to be able to do this. [sobbing] See you later. I wish more than
anything that I didn’t have to choose between
the two things that make my life meaningful:
my son and my life’s work. But the differences
between the care I get in New York
and Texas forces me to live where I can get the
health care I need and continue my career. This hurts. Nobody ought to be forced
to make these choices. No matter how far
away we are, my son, I will never abandon you.

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