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.
46 comments:
Anyone who thinks that they don't know someone who needs governmental assistance has their freakin' head in the sand. Whatever happened to the idea of Americans looking out for one another? This is the crap that pisses.me.off
Fight the good fight. And thank you for caring not only about Bill, but about all Americans in need.
Thank you for this. It's an incredible peace that I'm sharing on as many sites as possible. People need to realize that this is the human face of cutting funds for the most vulnerable.
I "retired" from Social Services and left Missouri in 2005 ( after the last round of budget and insurance cuts I could stand). Blunt did not even wait until he was in office to start his slash and burn for Senior and Social Services in Missouri. The day after the election his "team" went to work. And God/Goddess/nothing/something/pick one/whatever knows Seniors and children being abused have suffered. There were too few resources before Blunt to get the job done well, and it's not getting done at all now. A few years ago it was "get a pic with the Down's Syndrome kid" but less so now. Being "Tough on Predators" is the new rallying cry for those who want to hide their misdeeds behind curtains of sympathy and outrage. Witness "eliminate child labor laws" Jane Cunningham's emphasis on being "tough on predators" being used as spin to help her overcome the negative publicity she got over her desire to set up the next historical equivalent of the Triangle Factory fire. Seniors, the disabled, children. Lets' face it, there is no evidence that the State of Missouri actually gives a damn . I am, as always, grateful that you do. Thank you for another brilliant and insightful post.
This makes me upset, and embarrassed. I feel that is it the DUTY of able bodied Americans to take care of those who cannot care for themselves. For tax paying Americans like me... this means I am HAPPY to have taxes deducted from my biweekly paycheck...in order to do exactly this.. TAKE CARE OF THOSE WHO CANNOT CARE FOR THEMSELVES. It makes me sick to know that selfish people would rather just cut these tax funded programs rather than boost them. As a teacher, I see the need in society for things like medicare, food stamps etc first hand every day.
*sigh* I'm just sad. Sad and embarrassed.
I can't imagine trying to feed my eight year old son, let alone a grown man on $160 a month, let alone $80. My son eats that much in a week. And I cook from scratch with no convenience food. I'm so tired of this war on poor and disabled while we give millions to those who already have plenty.
I know it's off the point, but I'm confused about the $2.66
Blame the $2.66 on my editor (translation - I don't have one), Anonymous. I was contemplating a 50% cut when I first wrote this.
Thanks for catching!
"Bill also has type 2 diabetes that is controlled through diet."
I am sure they are taking into account the money that proper dietary choices SAVES in medical and pharmaceutical expenses. Oh, wait, these are the republicans. Never mind...
Survival of the fittest. Civilized or not, humans are no different or exempt from any if the laws of nature. If you can't take care of yourself, tough. It's no one's responsibility to do it for you.
Quit whining. Being poor is one thing, but weak and dependent is another.
I don't know a lot about these things but I know people who get food (pre boxed groceries) from church's. There used to be one called Angel Food Ministries, they're gone now but there was an article talking about Gaballi (http://www.gaballi.com/index.php/host-site-find-a-host) being a good replacement for the services. The people I know who use these services are not religious and do not get hassled when there about it. I hope that can help you/somebody.
Hi Pamela
Have just come across your blog and read this current article and felt compelled to comment. I feel angry just reading about this cuts. I hope you are able to make someone sit up and take note of this appalling blight on humanity. I live in Australia and although our system is a little different there are cut backs occurring here and in certain states there is quite a bit of fund cutting, leaving the vulnerable and most needy out in the cold. I hope your fight for your brother and others like him is successful.
Good luck.
Thank you for writing this! I work for a social service agency for people with developmental disabilities and am very familiar with how difficult it is to feed an adult on $160 a month. I can't imagine our clients having to face an 11% cut to a budget that is already so low.
I am confused about why your brother would lose his Medicaid for having a job with such low monthly income, though! A lot of the clients at my agency have part-time jobs. They just can't exceed ~$12,000/year (can't remember the exact number.) This is in St. Louis, too! So IDK...maybe the laws have changed again?
Thanks for sharing your personal story to illustrate the importance of this program. Food assistance is one of the most effective government programs we have in terms of efficiency and preventative care, and it isn't adequate by half. I worked in a food bank for a while, and I am convinced that food stamps and food pantries are all that stands between the millions of people struggling with the poor policies we have in the U.S. related to labor or disability (most food bank clients are people who work low-wage jobs, most of the other clients are unable to work for health reasons) and mass rioting. You'd think these folks on the right would recognize the pacifying work that relief programs do to protect them from the people's discontent...but in any case, please keep up your important work in informing the public about who the needy really are.
I'm in the process of becoming politcally literate, so sorry if this is an obvious question.
Will the Affordable Care Act help Bill in this situation?
I did some minor research and I was unclear whether it was good or bad for people with severe autism. One article said it was great, another complained that only covering behavioral treatments wasn't enough (i debated if this was true, because outside of the specific clause about Autism, was a broader list of required coverage for people with other disabilities, like medications I think, and some other benefits).
I'm in the process of becoming politcally literate, so sorry if this is an obvious question.
Will the Affordable Care Act help Bill in this situation?
I did some minor research and I was unclear whether it was good or bad for people with severe autism. One article said it was great, another complained that only covering behavioral treatments wasn't enough (i debated if this was true, because outside of the specific clause about Autism, was a broader list of required coverage for people with other disabilities, like medications I think, and some other benefits).
I wanted everyone to read Anonymous 6:04pm...and then read the comment again.
That is how the Paul Ryans of the world really feel.
My brother is developmentally disabled.
Anonymous 6:04pm thinks he's weak.
My brother has a verbal vocabulary of less than 100 words.
Anonymous 6:04pm thinks he's just shit out of luck.
That's the real emotion behind these budget cuts.
Don't ever lose sight of that.
Oh, and Anonymous 6:04pm?
If you even dream about insulting my brother again, you'd better wake up and apologize.
You've shamed the trolls today, asshole...
Regarding the Affordable Care Act...
ACA incudes a Medicaid expansion. The Supreme Court ruling allows states to refuse that expansion even though there are federal funds allotted for it.
Missouri wil refuse.
Because my brother is autistic, moving him would cause great emotional and physically stress. If things get worse we'l have to, but right now we're hoping to avoid that.
So, ACA is great for traditional families but not so great for non-traditional ones like mine. I still can't take my brother onto my health insurance. And ACA means that we'll know what the doctor's recommend for Bill's nutritional health...but until doctors prescribe food (and they don't) we'll still face the challenge of meeting those recommendations.
But now I know that my brother will not be dropped. They may starve him but he'll be able to see a doctor during the process.
Thanks for the question!
Anonymous 7:06pm...
Tis true that many charities and churches provide food pantries.
Tis also true that those services are strained to the breaking point...and an 11% reduction in food assistance will only strain them further.
I like to suggest folks read Angela's Ashes for a good example of what happens when communities depend on faith-based charity to deliver social services. Trust that it isn't a pretty picture.
I am a veteran and currently a military spouse, and the notion that funds are being redirected from food assistance to defense is particularly upsetting to me. I absolutely value military service members receiving adequate pay and equipment, but the issue is that the government completely squanders the funding that they do have. Rather than shop around for companies to give multi-billion dollar contracts to, the powers that be simply approach one and ask "how much?" These contracting companies are not stupid and know how deep the pockets are... vehicles/equipment are then marked up sometimes over 500% their original cost and sold to the military. I often joke with my husband about applying for a job as an acquisition liaison on the grounds that I would need no salary - I'd just pocket 10% of what I save the military on equipment.
Anyway, I was just throwing that out there in case anyone ever tries to pull the "think of the soldiers!" argument. I only found your blog today, so I wasn't sure if that had ever come up. Interesting how Congress makes six figures and elected officials get generous benefits the rest of their lives, yet military pay, medicaid, and assistance are always the categories up on the chopping block when there are funding issues.
I am wishing all the best for you and your siblings. Your brother is very lucky that you and your sister are so loyal and capable.
Unfortunately with our laws we cannot kill off the heartless bastards like you (or let you starve), because honestly I'm much more comfortable helping to care for a community with decent people of different abilities who are caring and engaged than someone who has no sense of what it means to care for other people.
The comment at 6:04 that I made a comment about how we have laws that prevent us from killing people like him. However I was posting from my phone and didn't realize that the comments only show up in a row and you can't comment on another's comment. Just wanted to clarify that I believe that it is much better to live with people of different ability levels and care for all than to act like animals. Although I will admit 6:04 brings out the part of me with a will for violence... and my survival instinct is pretty strong.
...and yet another one of the sad ironies is that I wouldn't be surpised if Anonymous 6:04pm has diagnosed himself or herself with Asperger's in order to feel good about calling your brother weak (and maybe dismissing your helping your brother as "neurotypical"). :(
I really appreciate this post. My family and I have been on assistance sporadically throughout my life. I also have a brother with autism - he's 13 now but I cannot help worrying about how he will survive in the future if he is forced to rely on the charity of strangers who do not understand him. Your reference to Angela's Ashes is a perfect example - it's irresponsible for a democracy to just leave it up to people to take care of each other when people like Paul Ryan have no problem cutting programs for the poor and disabled, and Jan Brewer feels like she can deny healthcare to LGBT individuals.
It's unfair. It's also DISGUSTING that the right uses people like your brother and my brother - the disabled - as pawns to push their agendas, but completely forget about these individuals when they actually need assistance (Autism Speaks only reinforces that). There are so many issues that need addressing in regards to the economic problems going on - and austerity is not the answer.
As someone diagnosed as PDD/Asperger's syndrome, I'd love to know what Anonymous 6:04 would say about me. I can work, but even I need some help. Networking and job interviewing require social skills. I have student loans to pay off. In his eyes, do I deserve to starve for not having the right degree, the right socioeconomic background, or the right neurobiology? Then again, I seem to have better 'perspective taking' skills than some GOP members.
"...Just wanted to clarify that I believe that it is much better to live with people of different ability levels and care for all than to act like animals..."
Rock on!
Also, animals, hmm.
http://findarticles.com/p/articles/mi_m0FRO/is_2_132/ai_54152683/pg_2/?tag=content;col1
"...Unlike many avian species that allow their weak young to be discarded or thrown from the nest, keas pamper an undersized chick, even lifting its head to force-feed if it is too weak to eat on its own..."
It's absolutely appalling how little we care for the most vulnerable among us.
As a citizen of the crazy state of Kansas I feel you about the ACA's Medicaid provisions. There's no way expansion is going to happen here, either. Sometimes I really question why we stay here. Being born & raised somewhere only takes you so far.
Thanks for an enlightening, eye opening post. Will be sharing it far and wide.
This made me cry. I'm already on the side of fully funding these programs, so I'll try to spread it around and make other people cry too - and maybe, hopefully, think.
I'm a social worker who has worked with the disabled for many years. Government has cut and cut this group out of services, programs, benefits for years. Because this group tends to not advocate for themselves it is easy to cut from them. Yet, it equals very little money for the state or federal government. Really, they don't save that much money. And it creates so much stress on people who are already too stressed as it is.
I just get furious that the rich do not want to have their taxes increased as they sit in their fancy homes, etc and claim that the disabled need to work harder and they too can be rich. Really? Most rich people inherited their wealth and their daddies and mommies made the money off the sweat of workers, roads build by the government, etc. No one gets rich without help. Hang in there and keep voicing these real situations.
I'm sorry - the government is not the answer to your brother's problems.
Eliminate the federal income tax, eliminate all but the essential federal programs (defense and border) and watch what will happen. People will start giving more money to charity and charities will be able to help your brother.
What's the difference between charities and the government? The government is a giant machine that seeks to control the lives of citizens and costs an obscene amount of money to run. Charities can run with WAY less overhead and don't really desire to control the lives of anyone.
Government is not the answer. Yes, have compassion for your brother, but I don't want one penny more than is necessary to go to the government. Government, by its very nature, is evil and seeks to control everyone.
Stop looking to the government to help your brother. Start looking to private enterprise.
What we have here is a failure to think.
In your world, Anonymous, I'm looking for government to provide a hand out.
In my world, government has a role...a role early humans recognized when they created governments to do the things private enterprise failed to do.
You see government as the enemy.
I see government as the entity that keeps the masses from having to live in your if-a-private-enterprise-ain't-doing-it-then-fuck-it world.
Cause the private sector is just lining up to to take over providing managed care, health care, and nutrition for adults with disabilities...right?
Oh, and cause on your planet people anticipate having an autistic child and therefore have planned to provide food, clothing, health care, and shelter for their loved one until death...right?
***rolls eyes***
One of these days the anti-government crowd will wake up to the reality that the idea of government was inspired by the lack of government...and if y'all were half as smart as you think you are you'd hate yourself.
Oh yeah. The EEEEVILLLL guv'mint. The entity that provides the roads that enable food and other goods to be shipped all over the country. What? AnonLibertarian, do you grow all of your own food on land within walking distance? No? Why, you are relying on handouts from the EEEEVILLL guv'mint. I could go on, but it's like shooting fish in a barrel.
Pamela,
What has happened to empathy in this country? I read the comment by anonymous and can't fathom what a sad, pathetic person this must be. I volunteer at a charity in K.C. that has a food pantry and I see first hand what some people are up against. Most people do not want to be there, they have no choice. There will always be the few that take advantage but you will never get away from that. What I see are people that just can't make it on what they get paid or the elderly that must choose between medicine and food or people who have lost a job. I have been blessed in this life, I have a home, food on the table, I can pay my bills and because of that I feel it is my duty to donate to charities. It's what God wants us to do, and yes I believe in government assistance. You are a good sister, I enjoyed your writing. And I am an angry white bitch.
Pamela,
I do empathize with your situation and I will be praying for your family's financial standing to improve so much so that neither government nor charitable contributions will be necessary.
I must say that I do know people, even members of my own family, who are on some sort of public assistance, but I must say that most are on it by choice. They simply do not want to work and are perfectly happy having their needs and wants supplied by those who are willing to work hard. There was once a certain level of shame attached to being on aid, but not anymore. There should be no shame in accepting help when needed, but the kind of sloth that is encourage by a bloated and broke government is becoming a norm. The truth is that our country is in debt way past our ears, and its the people who could be taking care of themselves but won't who are really effecting your family's circumstances.
I was raised by parents who taught me and my brother that whenever you depend on anybody or anything but God, you will always be disappointed. It is so true. Your brother will be taken care of as long as you love him.
Anonymous...
I consider myself a person with faith but no one's fool.
My love for my brother is the reason why I fight.
1 out of 100 children are autistic & autism reflects a small portion of the disabled.
So let's keep it real.
Faith based institutions no longer care for disabled people like my brother because they failed. Google it...trust that I grew up surrounded by survivors of "charity".
I take care of myself. I pay taxes. My father & grandfather fought for this country. And I'll be damned if y'all brand social services and $160 a month in food assistance as a hand out.
Listen to yourself.
You should be ashamed.
I for one am disgusted.
And another thing...
I find it telling that Anonymouses defend cutting food assistance for the disabled but never question what isn't being cut.
If we are judged by how we treat our most vulnerable citizens then we're in big trouble.
Pamela,
I have absolutely nothing to be ashamed of because like you, I take care of myself and pay taxes. Both my father and grandfather as well as a few others in my family fought for this country. Autism has touched my family, along with cancer, leukemia (took my Father in 2010), PAD (took my Brother in 2004), and I myself have a heart condition. That's where that empathy is coming from.
No need to be damned. You have simply misunderstood my message if you believe my wish is to eliminate or reduce social services for those who need them, such as you brother. I won't waste any time Google-ing anything in regards to the success or failure of charitable organizations because, as I stated in my original message:
"...that whenever you depend on anybody or anything but God, you will always be disappointed."
Very interesting conversation, but since this is one that we can't seem to have without being insulting, I'll be moving on. I'll still be praying for you and your brother.
Anonymous...
This isn't a discussion. This is real. Congress is considering taking food from people who have no alternative for feeding themselves.
The fact that you think anyone facing this is feeling civil makes me question your sanity.
Pray for yourself, son.
You need it.
It's funny how those like Anonymous 6:04 aren't looking at the whole picture. I know I read the part where your brother was happy to make $80/month but it threatened everything else. Is there anyone who really believes that he is able to just go out and get a job?
It is uncivilized to overlook those who are unable to take care of themselves.
I am reposting this excellent essay.
It deserves wide readership!
And they dither over the Stock Exchange transaction tax (an unnoticed norm til the 1% gave it the boot recently).
And Rummy just didn't know where the pentagon left those Trillions (with "T"). Left it at the bus stop I suppose.
If it is any help at all, the GAP has a little known program for hiring people with dev. disabilities. I don't know if they have many in MO though.
I am very upset by this situation.
I live in Louisiana and receive Social Security Disability. My food stamp allotment is $50.00 a month for a single person household.
Thank you for writing this.
Reading these comments, I'm reminded how some people like to claim that "liberialism is a disease." The Social Darwinism is more sickening than any level of human compassion that MOST (not all) liberal thinking represents
Nice article, thanks for the information.
Pamela... I'm sorry. I hope you don't mind my linking my FB page to your essay. I want my friends and readers to know what's happening here.
I am 50 years old, on disability with a terminal illness. High blood pressure in the lungs. They want me to eat a nice, nutritious meal and I keep wondering how I'm supposed to do that on $99.00 a month I receive in food stamps. There are days that go by that I don't eat, because I can't afford to. I feel for your situation.
I know I'm about a month late on this, but ok:
First, I am a single, 29 yr old black mother of a 7 yr old with Autism. I found out when my son was 3 years old, so I couldn't use Early Intervention here in FL to help him. However, my son and I have to make due with $330 for the both of us in food stamps as well as $698 in SSI benefits to live on while I finish school to become a nurse. With rent being $645, electric being about $150-190 a month, and my son having a supremely high metabolism, there's many months where I have to go to agencies and beg to have bills paid, and even then if they do pay, the majority only allow you to come to them ONCE A YEAR! EVERY MONTH I'm struggling...oh, and before the trolls start bashing me about getting a job: I had a job. A pretty decent paying one, and guess wht? I had to be let go because my son caught Conjunctivitis (Pink Eye) at his public school and no one could watch him for me. My job jad a point system, and I had to miss a week of work, which almost put me over the limit. I didn't find out until I was being fired that FMLA (the Family Medical Leave Act) is not enacted for employees until after a YEAR of employment! And mind you, they KNEW in advance that my son is Autistic. Many in the HR Department came to my son's birthday party, so they KNEW!
I feel your pain, sister. I shudder to think how my son will survive if I am taken from this world too soon. If your experience is by any way a measuring stick, it's sad to say this, but as a mom who loves and adores her only baby, I pray the my son is taken first. It breaks my heart to see you and your family suffering, and the saddest part is,there are VERY, VERY few places that help families like ours nationwide, and even THEY have super-long waiting lists....please keep me and my Erick in your thoughts, as I will be sure to keep you and your dear and AWESOME (yes, I believe that Autistic people are AWESOME!) brother in ours....Keep the Faith.
Shantell
I just read your blog, and I feel for you and your brother as well as your other sister. It's hard to believe we live in one of the richest countries in the world and yet we have people who can't afford to buy a cup of coffee. Are Government is so eager to send help to other countries well cutting the help they're been giving to their own citizens it makes no sense to me. But I'm sure the help the unit State is giving to other countries isn't out of the goodness of there hearts no I assume there is money to be made in the long run. And helping their own citizens doesn't bring in money. I understand having everything cut cut. I'm a 56 year out women who is disabled and has cancer and kidney failure. I had my food stamps cut down to 23 dollars a month. I have been living off of my medicade card I get 100 towards groceries. I have kidney failure stage 3 b and have to eat a special diet. I have not been able to afford the foods, so I had to actually start working a part time job to afford food. I work 18 hours every two weeks and make under 10 dollars . My medicade came up for renew last month and because I'm working this part time job so I can eat they are cutting my medicade. The United States government can't make you there dam minds in what they want us to do. If we don't work we are lazy bums but if we do work they take everything away even when we really don't have enough money to survive. I now have to guite my part time job because I need my insurance and this part time job doesn't offer insurance. I can't work a full time job but I was trying to help myself and the government won't let me
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