I've spent a lot of time lobbying for health care reform, but it occurred to me that I haven't spent much time explaining some of the reasons why. 'Tis time to put a dash of the personal on top of all that activism!
Ahem.
Shall we?
I've got several personal health care stories, but I'd like to share one about my brother today. As some of you know, my older brother Bill is autistic. He's aphasic and that, along with his autism, made for many a misdiagnosis when he was a child. Bill wasn't diagnosed as autistic until he was around seven years old and all the doctors weren't on the same page about that diagnosis until he turned nine.
I'm the youngest of three siblings so I've spent my entire life with autism in my world. That has some serious benefits...I have a deep appreciation of the gift of easy communication and the amazing variety of ways there are to communicate. But it also has some serious challenges...like the vocal ignorance of others, media that could give a damn other than to lament how fucking awful my life and my brother's life must be (um, NOT!) and a health care system that is stuck in the 1960s regarding providing coverage for autism and to autistic people.
We often fail to truly see what we experience every day. I'm guilty of that regarding my family's experience trying to get my brother diagnosed and trying to figure out how to get him what he needs to live a fulfilled happy life. My sister and I grew up knowing that we would one day have to take the reins of my brother's care. My parents divorced...our father passed away in 1998...and my mother, long blamed for my brother's condition by clergy and physicians and far too many others, is emotionally incapable of continuing her role as my brother's champion. So, in 2002 I moved back home to St. Louis Missouri to become co-guardian of my brother with my sister...and I came face to face with the reality of trying to get basic health care for my brother.
39 years ago my parent's faced an insurance industry that refused to acknowledge autism and the needs of people with autism. They funded meds but did not cover behavior therapy.
Many of my brother's autistic age contemporaries were institutionalized.
My brother, despite the advice of doctors, was not.
My parent's, both trained in how to get shit done through their activism in the Civil Rights movement, turned our family into an action organization. One of my fondest memories is of my mother taking my brother to the Missouri House of Representatives so that legislators could see what autistic behaviors look like and hear what they sound like...and I'll never forget her sense of accomplishment and relief as she, along with a ground of amazing women, won several legislative victories that form the foundation of childhood education for children with autism in Missouri.
Some 39 years later too many American families still face an insurance industry that refuses to cover essential services related to autism.
I know that my family was privileged.
Not lucky...not simply blessed...but privileged to have the kind of money coming in from my father's job to fill in the gaps and fund the thousands of therapies that made up so much of my brother's childhood. As a result, my brother was able to develop a system of sign language and about 20 verbal words that allow him to express his needs, fears, wants and desires. He is able to work, when the state of Missouri feels like funding his transportation to a job and when they don't feel like cutting his Medicaid coverage for daring to earn $60.00 a month. He has friends and hobbies and a life...all because my family was privileged to have the money to be able to feed his soul instead of dose it out of existence and to kick open doors for him that only respond to the force of money.
I added my voice to the chorus calling for health care reform in general and health care reform that includes coverage for autism spectrum disorder specifically because I know my family was privileged...that they were able to damn near bankrupt themselves, able to set aside personal wants for their child's needs, able to try something new when it held hope or something weird when it held promise...and I know that too many families are not able to even dream of exploring options that may help their loved one.
I strongly encourage you to share your personal health care reform story. Write a blog post about why you think essential community providers like Planned Parenthood clinics need to be included in any health care reform...write a letter to the editor about why access needs to be a key component to any reform...put a name and a face to a specific element of health care reform and tell your story to those who are making decisions.
It's time to take the privilege out of health care...it's way past time...
0 TrackBacks
Listed below are links to blogs that reference this entry: Notes from a bitch...a personal reflection on healthcare....
TrackBack URL for this entry: http://www.feministing.com/cgi-bin/movabletype/mt-tb.fcgi/15278
Thanks for sharing your story.
You may find this link useful: http://www.usatoday.com/news/health/2009-05-27-iphone-autism_N.htm
It's about an iPhone app that is being marketing to people with autism and anyone who has lost the ability to speak. I learned about it through the Reeve Foundation. In 2005, I was unable to speak for 2 1/2 months when my vocal cords were paralyzed due to a spinal cord injury. This would have simply changed my life.
I don't know if this would help your brother but I am telling everyone I can about it because the idea that a $500 system ($2-3500 for iPhone/iTouch + $149 for app) would give the speechless the ability to speak is simply mind boggling. (LOL, I tried to typing "boggling" three times and it kept coming out "blogging".) As you probably know, many such systems are thousands of dollars.
This would have been a life-saver for me. Please share the information with others as appropriate.
Since you asked about our personal experiences with healthcare...(sorry this is so long!).
“But, honey, I thought we would have the money to pay for my kobudo this month? Why are we so broke?”
“Because another four hundred dollars of medical bills came in the mail last week,” I reply, and listen to the silence that reverberates with guilt on the other end of the line.
Like most twenty-somethings, I’d never thought much about my health insurance. I went to the once a year for my annual physical, paid my twenty dollar co-pay, and didn’t worry about it. I knew, vaguely, that reform was needed, but it hadn’t touched me. Yet.
Then, in 2006 my boyfriend’s occasional shaky balance, fatigue, and stumbling, were diagnosed as multiple sclerosis. We were both twenty-eight, otherwise healthy, and unprepared for a diagnosis that would change almost every detail of our lives.
On top of dealing with the nasty glares from strangers when we parked in a handicapped spot, or disparaging comments when my now-husband made his petite wife carry the heavy stuff in from the car, with the reality that I had to do most of the house and yardwork as his fatigue worsened and abilities lessened, we embarked on the strange journey of American healthcare. At first, after the initial MRI’s and Doctor’s consults were paid for, there weren’t that many additional expenses. But then he was laid off, and we had to switch to my employer’s health coverage. Our monthly premiums doubled. Our deductible doubled, our max out-of-pocket tripled, and the cost of his drugs went from $15 a quarter to $300 (now $375. They raised it mid-year. Nice of them).
And the system seems to be set up in order to generate the maximum of confusion so that providers have to pay a minimum of fees.
“Why are we being charged $2,200 for these MRI’s? Shouldn’t our portion only be twenty percent of the total?”
“No, your employer changed their coverage. You now pay twenty-five percent, if the provider’s in-network.”
“But we called and checked, you said his neurologist was in-network!”
“He is, but he’s a Tier Two provider, not a Tier One provider, so you have to pay a higher percentage.”
Not just in-network, but tiered within that network! What will they think of next, in-network, tiered, and based on the day of the week you see the provider? Oh, and our max out-of-pocket is $4,500 per person, unless he goes to a Tier Two provider, at which point it rises to $6,000. With the additional complications from his MS, our medical bills have averaged $400-800/month this year. Forget saving any extra money. We dared to take a vacation this summer (our first in three years, we didn’t even take a honeymoon) and came home to another $400 of medical bills waiting in the mail.
And we have health insurance.
What if we lost it? When he was laid off, the thought was terrifying. We only had a one day (one day!) window during which we could get him on my healthcare, if we’d missed it we would have had to wait another month. COBRA would have been, needless to say, prohibitively expensive. His drugs are $20,000/year without health insurance, and while the pharmaceutical company that manufactures them does have programs in place for those who can’t pay, getting approved is a complicated and scary process.
He now has a new job, but they don’t offer him health insurance. So what if I lost my job? What then? Looking at our bills before insurance, and calculating the probable cost of COBRA, is a terrifying prospect. I firmly believe that no one should have to worry about losing their home, or feeding their children, if they have the misfortune to draw a bad straw when it comes to their health. We do need a national option for healthcare, and we need it now. Even knowing that it may raise my taxes I’m advocating for a change to our current system.
- D
I really like that you mentioned the necessity of therapy, not just medication, for people with autism. It's an issue that comes up with a lot of different psychiatric conditions, and it's actually a major problem in Canada too because psychologists aren't generally covered under provincial health insurance--only psychiatrists are, so people sometimes end up getting meds but minimal to no therapy. Psychiatric medications do not work or have intolerable side effects for many people, and for most psychiatric conditions the combination of therapy and medication is much more effective than therapy alone.
This is a particularly important issue for teens. Antidepressants can occasionally increase suicidality in teenagers, and in my experience, parental behaviour tends to contribute heavily to teen mental health problems. So depressed/self-destructive teens need therapy, I believe preferably both individual and family therapy, in conjunction with or instead of meds. Unfortunately, they usually can't get it, not least because parents of mentally ill children and teens are frequently in denial and won't pay for appropriate care.
Psychotherapy needs to become much more widely available to the general population, but particularly to people who are too disabled to hold a high-paying job (a major issue for many adults on the autism spectrum, even those who are much higher-functioning than Shark-Fu's brother, because so many jobs are heavily social) and to children and teens whose parents will not consent to/pay for therapy.
Sorry, the end of the first paragraph should have said, "the combination of therapy and medication is much more effective than medication alone."
Indeed: here in the UK, access to 'soft' healthcare services is very difficult to get hold of on the National Heath Service too. Psychiatry and behavioural therapy are in short supply. This is in no way an argument against national health care, but rather a reminder that there's a lot of work to be done even in countries where such a system is in place. Even in such countries, issues like those raised in the original post - a refusal to recognise certain conditions as qualifying fo care - take place. It's just that it's a question of whether it's the national healthcare system that won't pay to treat certain conditions/for certain therapies, or whether it's a private health insurance company that won't accept them as legitimate uses of money.
Thank you so much for sharing your story, sharkfu.
I strongly encourage you to share your personal health care reform story. Write a blog post about why you think essential community providers like Planned Parenthood clinics need to be included in any health care reform...write a letter to the editor about why access needs to be a key component to any reform...put a name and a face to a specific element of health care reform and tell your story to those who are making decisions.
I think this is supremely important. Debates about health care reform are often abstract and discussion is distanced from the humanity of the issue. It's like politicians and the mainstream media forget that we are talking about people's lives. Or they want us to forget. This is life and death. This is the ability to pursue happiness. Health care is a privilege when it should be a right. How is someone supposed to be a productive member of society if they are physically and/or mentally ill and swimming in debt? How am I supposed to pursue happiness when I can't afford to see a doctor if I get sick?
Wow, health care, such a big topic. For the last several years I've been paying my mother's health insurance which had finally hit $1000/month & was topping my ability to pay for it. Thank God she finally qualifed for Medicare. On the other end of the scale my best friend moved from MI to TX last year to look for better employment & a lower cost of living. His youngest son was facing his 3rd relapse of leukemia. In MI Brandon had qualifed for the state's children's health care plan which had supplemented my friend's meager insurance. In TX they were told that it would be a 2yr wait even for someone in his condition. Eleven months later his son passed. In between times the insurance company was a real butthead. The health care debate is really complicated & while I know I don't favor the full on public option, or single payer systems as in Canada or the UK, I also know something has to be done so that those who don't have health insurance have it, and those that do have it better & more cheaply.
Wow, that really puts the lie to the idea that people in the U.S. don't have to deal with as long wait times for treatment as people in Canada.
Wow, that really puts the lie to the idea that people in the U.S. don't have to deal with as long wait times for treatment as people in Canada.
I'll be honest, I've had a fairly privileged life as far as health care goes. I've never not had it. I have to say that I'm not sure I agree with universal health care, but I do think that there REALLY needs to be a major overhaul.
I don't understand how anyone can think that just because someone has no health care, is essentially deserving of shit treatment and huge bills, is right.
And I seem to remember a Science Friday (I even found it! http://www.sciencefriday.com/pages/2007/Mar/hour2_030207.html ) where it talks about how there are medical companies patenting genes that would show their drugs wouldn't work for you and for other general money-purposes. I know that's not the only reason why, but in general it feels like bullshit.
On Wednesday I will have a possibly cancerous polyp removed from my cervix. I have to use Planned Parenthood because I don't have insurance. I'm only 22, I have never had sex with anyone but my boyfriend so it's not like I'm out there having sex and contracting HPV. He has only been with one other partner and they were safe. If I was not using Planned Parenthood not only would I not know I had the polyp but god forbid HPV, well I shudder to think about the consequences. I am lucky. How many other young women who need to have annual exams have to go with out because they don't have insurance? Planned Parenthood is a vital resource to women in my position who know well enough to get annual exams and safe affordable contraception as well as the wealth of resources they offer to women. Planned Parenthood needs more funding to help Families, Women and young adults stay healthy sexually and mentally surely that must be of some importance.
Hello, Ms. Fu. I wanted to stop in and let you know that I appreciate your posts and I learn from them. My failure to comment on them is no reflection on their value. Often they leave me reflecting for days, which is a very good thing.
Ms. Fu I think I love you!
For months I have been ranting and raving to anyone who will listen (and those who will not) about the need for serious reform to the way our healthcare system works.
Three and a half years ago I was diagnosed at age 38 with breast cancer that required surgery, radiation and chemotherapy. I am forever grateful that I have health insurance for I do not know where I would be without it. We have a family friend who was diagnosed with testicular cancer and did not have insurance and nine (9!!) years later is still paying off the bills.
Unfortunately there are still many who feel that we should be grateful that we are alive and stop bitching about the system. If people have not been personally touched by the expense of a major illness or developmental disability they can not believe the cost or the fact that it could ever happen to them.
I have priced insurance for myself should I lose my job in this economy and the least expensive coverage available that will cover my pre existing condition is $1,400 dollars PER MONTH, with a $5,000 dollar deductible and a 50% co pay. I work with children with similar issues to your brother and you know how that pays.
Something must be done and telling the story of your family helps the cause. Thank you!
Kate @ http://www.aftercancernowwhat.com