I recently celebrated my 34th birthday 34 is not a significant number, but it means you're closer to midlife crisis mode, just kidding, at least I hope so. My birthday got me thinking over the last month, or so I've had a new zest for life. I'm more focused on bettering myself and life. I currently serve as a communications team member for Access the vote Florida, which I helped found along with my work for ATVFL. I've been blogging more, and I'm trying to increase my internet presence. All that said, I had a conversation recently with a friend and caregiver about what life was like before I moved to Florida.
My friend and I randomly got on the
topic of what he's doing with his life; he is currently going to school to
become an EMT. As the conversation progressed, we fell on the topic of my AID
care. Before moving to Florida, I lived in north western Pennsylvania. I have a
love hate relationship with Pennsylvania. I loved it because it gave me freedom
from my parents but hated it because the area of the state I was in was too
fucking cold. I left Pennsylvania shortly after my dad had a stroke; you would
think I would be happy being close to family, and on the outside, I am; however
I still have a free spirit and long for adventure.
It has been eight years since my dad's
stroke, he is not back to 100%, and I do not think he will ever be, but he's
doing 100x better (love you, dad). Some of you reading this may ask now that he
is doing better, why don't you move out of Florida? There is no simple answer
to that question; indeed, quite the opposite, I enjoy being close to my family,
but sometimes I wonder if we're too close physically, I mean. Secondly, if I
wanted to change my physical location, there are several factors id must take
into consideration. The most obvious is if my dad's health declined; however,
my main concern is my care.
Just as a refresher for my returning
readers and a bit of information for my new ones, I have what is known as
spastic quadriplegic cerebral palsy. For the most part, I am lucky to have the
type of cp I do. My cp doesn't impact my mental capabilities; instead, I
believe it enhances them to compensate for my lack of ability. Due to my
physical limitations, I require a large amount of physical help. I am even
getting help writing this blog. I could have used my voice-activated software,
but while it's effective, sometimes it is easier to get others' help. Because
my voice is often unpredictable, it will be loud and strong, and the next
minute people around me cannot understand me because I am whispering.
Individuals like myself need a large amount of aid and have limited options. They
can live in a group or nursing home or use what is known if Florida is a home
and community-based waiver (the waivers name varies by state). If I did not use
the waiver, my family would have to pay out of pocket, but the waiver is
restrictive.
When someone uses this waiver, they
must follow strict guidelines, including guidelines about their income and the
place they can live. For example, in Florida, where I live, there are two
versions of the waiver, the agency model and the CDC plus model. The agency model
means you hire an agency to send aids to your house while the CDC model
eliminates the agency and allows you, the customer, to be the boss. My waiver
services will travel with me anywhere in Florida; however, if I had the
opportunity to move back to the Washington DC area to pursue my advocacy on a
national level, I would have to wait six months to a year in order to be
eligible. Another hurdle I would have to overcome in Maryland is the number of
hours I would get compared to Florida. The allotment of Medicaid funds is like
a salary; you only have so much every year to spend on a caregiver, and
Medicaid always chooses the cheapest option. My allotment would change
depending on the state I went to.
Now weigh all the facts and how the
system runs currently, I ask this question the aid care system hasn't evolved
very much over the years. Is it not time to solve a 21st-century
problem with a 21st-century solution? I propose the following
solution since Medicaid is available in all 50 states, would it not be possible
to federalize their program and treat it as health insurance? Health insurance
has no borders; why should aid care?
