Longtime readers know that my older brother Bill is
autistic. My sister and I are
co-guardians. We’ve had that role
for years now…and every year has provided raw lessons in the difference between
how people talk about social services and how people experience them. Now that the GOP controlled US House has announced plans to cut food assistance funding, I’m compelled to
share a bit of the lessons I’ve learned.
A confession first – I’m more than a bit emotional about
this shit. I adore my
brother. I want the best for
him. I struggle daily with
feelings of inadequacy and fear for his long-term wellbeing. So, when
Republicans threaten to gut a program that barely meets his needs I feel
it…deeply…to the bone. And I’m
having a hard time dealing with callous disregard from a nation my father
served in the military and that my parents fought to improve as civil rights
activists.
But I’m a
co-guardian…this is about my brother’s life…and I don’t get to dwell on my
disgust.
All I get to do in this situation is fight.
Having said that…
People on food assistance are people…seniors, the
unemployed, the under-employed, disabled people.
If you are an American then someone you know has or is
receiving food assistance.
If you have someone in your life with a developmental
disability then you have someone in your life that will likely need a social
service once they are an adult.
Tisn’t a matter of if…tis all about when and for how long.
My brother is disabled.
He used to work…but then Missouri Governor Matt Blunt
declared war on the poor and passed policy changes while cutting 150,000 people
off of Medicaid. Those policy
changes meant that people like my brother who were on Medicaid but also worked
would lose coverage if they made over a certain amount in income.
My brother made less than $80 a month working in the kitchen
of a fast food restaurant. He loved it…used to wake up at 4am to put on his
uniform even though he didn’t start work until noon. But he had to quit…because in Matt Blunt’s Missouri, adults
with autism who make $80 a month and also seek Medicaid coverage are
freeloaders addicted to the government’s tit.
It took us 5 years to find a day program to sorta-replace
the job my brother loved so much he woke up before dawn to get ready for. The same “reforms” that cut Medicaid
and forced thousands to quit working for fear of losing health care coverage
also slashed funding for other social services that provide day programs or volunteer support.
That brings me to the food assistance situation.
A single adult like my brother gets $160 per month in food
assistance. My brother is 42 years
old and he has all the nutrition needs of a 42-year-old man. My father died of a heart attack at the
age of 58…we’re working our asses off to make sure my brother doesn’t follow
that family tradition. Bill also
has type 2 diabetes that is controlled through diet.
Suffice it to say, $160 per month doesn’t meet his needs.
We haven’t seen an increase in food assistance funds since I
became a co-guardian.
Now the Republican controlled House, under the “leadership”
of Congressman Ryan, is seeking to cut federal food assistance funding.
My brother currently gets $160 a month in food assistance.
My brother’s birthday was the 5th of July.
$160 a month for 30 days of food.
We found out about the proposed funding cuts right before we made plans for a family dinner at his house.
$160 a month equals $5.33 per day.
I went to the store and spent money I don’t have on
ingredients for a meal I know he’ll enjoy. Eating well is a treat…a rare one for Bill and I know
it. So, I’ll skip a few meals…eat
soup or whatever…make it work somehow.
An 11 percent cut means $142 per month.
We dine at 5:30pm.
$142 per month equals $4.73 per day.
And I really hope he enjoys it.
$4.73 per day for food.
I hope he can’t see the fear in my eyes and doesn’t notice
how stressed out I am.
$4.73
I seriously hope people realize that the same political
party that politicizes special needs kids is prepared to starve special needs
adults to expand defense funding.
Well, I'm my brother’s defense. The only "funding" I get is unconditional love...and that's fueled many a war.
I don’t get to wallow in fear over what may happen to him if
his sisters aren’t there to pick up the slack…about how much food he’ll do without
‘cause a Congressman is trying to make a point or whether he’ll end up on the
street ‘cause a Senator is having a bad week or if my brother will die young
like his father because we didn’t have to means to give him the things he needs
to live long.
All I get to do in this situation?
Fight.
Congress should prepare accordingly.