This year, I've been writing a lot about cognitive disability and about health reform. It goes with the territory that I come into contact with many people, usually mothers and sisters, caring for loved ones. Some of their missives are heartrending. Many express simmering anger about schools, medical and social service systems that fail to provide needed help.
Some time ago, I met Nancy Skiver, a lovely woman who overcame many obstacles to raise her son Danny in a difficult time. She has been a strong advocate for children and adults living with disabilities. Ms. Skiver told me about the 1983 annual meeting of the Arizona Association for Retarded Citizens. The event included a ceremony honoring a woman named Renee Whaley as Parent of the Year. Now retired, Ms. Whaley spent her career working professionally and privately as an advocate for persons living with disabilities. In circumstances similar to Ms. Skiver's, she cared for her son David for many years. Both Danny and David have since passed away.
That was about one year into John McCain's career in the House. John and Cindy McCain were on hand at the ARC event. Then-Representative McCain gave the keynote. Ms. McCain has an admirable history of helping children with special needs. She has a Master's in Special Education. She has been active in global philanthropy with Operation SMILE and CARE. She deserves a lot of credit for these activities.
Ms. McCain is a good person, but she brings ideological blinders that, on this occasion, offended many assembled parents and revealed a basic difference between Democrats and Republicans about what we as a national community owe families who need help.
During the question and answers, Ms. McCain was asked about how government might help families caring for children living with cognitive or behavioral disabilities. Things got a bit frosty. As Ms. Skiver put it:
She stated that we (families that have children with disabilities) should not be requesting or taking State dollars for services. We should be requesting assistance from churches, nonprofits, and businesses. To me, this signified the McCain's had no idea of what we dealt with and how hard parents worked to go from charity cases to having legal rights (entitlements) for their children. Her statement demonstrated to me they could not relate at all....We paid taxes -- why shouldn't some dollars be allocated to assist citizens with developmental disabilities? Let's not forget that children with disabilities were effectively excluded from the public school system until 1975. Families fought quite a battle to win that right. Prior to that, families were forced to hire a teacher and hope that a business or church would donate a room so their child could receive an education.
Ms. Whaley recounted the same story. She still speaks with controlled anger as she related what was said. As she put it,
I went there for a wonderful occasion. I received an award that I still have. I came away with the sense that Senator and Ms. McCain had an across-the-board insensitivity and a total misunderstanding of what Arizona children really needed. Charity is not enough, and it is insulting. We have a constitutional guaranteed right to these services. America can't have people with disabilities living as second-class citizens.
Thanks largely to the activism of people like Renee Whaley and Nancy Skiver, America has greatly changed over the past 25 years. We have opened our hearts to many children and adults living with disabilities. Two generations of Alaska hockey moms to New Jersey housewives fought for medical services their children needed, banged down the doors of unreceptive local schools. They pushed for summer camps. They fought to eliminate freakish and ignorant imagery once-pervasive in American popular culture. They fought to move their loved ones from often-horrible institutional settings to still-flawed, but much-improved care in the general community.
In pushing for the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act, and much else, these parents rank among the fiercest and most effective community organizers in American history.
We have further to go. Yesterday I turned on This Week to see Ray Blunt oppose a stimulus package that would support, in his view, excessive state Medicaid spending. Senator McCain's economic team proposes (but fails to specify) $1.3 trillion dollars in Medicare and Medicaid cuts. By coincidence, they also put forward $1.3 trillion in additional regressive tax cuts over what Senator Obama proposes in his competing plan.
I am baffled by the widespread misconception that we spend lavishly on Medicaid. If anything, the program is under-funded. Medicaid does create big fiscal problems, for reasons that go beyond the program's control. Its expenditures rise with general medical inflation. It is the safety valve for whatever the rest of the healthcare financing system can't handle. It is financed by a rickety state-federal partnership that is no longer workable when health care consumes one-sixth of GDP.
Because of these pressures, Medicaid cuts a lot of corners. Many hospitals and individual providers turn away or discourage Medicaid patients because the program pays below-market rates. My own family's most recent dilemma was to find a dentist willing to take Medicaid and who is willing and able to serve my cognitively disabled brother-in-law Vincent. The last guy lazily prescribed prophylactic antibiotics and barely attempted to clean Vincent's teeth. (In case you're wondering, Vincent is a wonderfully compliant patient. He even thanks the phlebotomist.) Because Vincent is dually-eligible for Medicare and Medicaid, he is a desirable inpatient at our fancy academic medical center. Too bad he is unwelcome at the hospital pharmacy, which does not take Medicaid.
Ms. Whaley recently told me:
Don't tell me what you care about. Show me how you spend your money. In the end, our dollars flow to the things we really care about. When your view is to support people at the highest level, I've never found that the benefits sufficiently trickle down. So I'm angry about how reluctant we are to level the playing field.
Me too.
Two postscripts:
First: Congratulations to Paul Krugman for a well-deserved Nobel Prize. I've had my differences with Professor Krugman, whom I found a bit grumpy about Barack Obama, I have always greatly admired Professor Krugman's analytic rigor and clarity, and his commitment to social justice. Given the quality of his mind and his work, I believe the Nobel is more of a formality than an unexpected honor.
Second, if you ever get one of those emails alleging that Obama is a secret Muslim, here is where they come from. Make sure to set the sender and the recipients straight.
All of that money spent on autism awareness to be knocked off course with that kind of cold and cruel comment is something that I experienced to much of in the earlier years. It still hurts deeply but nothing surprises me about the lack of humanity anymore.
Heartbreaking.
If families were required to swear allegence to any church in order to receive services........... Would that mean; if the church didn't like what I did or said, they might deny my child services until I repent? Isn't that kind of like the nuns that would NOT feed the natives until they accepted Jesus as their lord and savior? Not to mention no regulations at all...... GRRRRRRRRR
Lack of empathy is sad indeed. I can't fault someone for never having experienced certain heartaches. But to coldly turn away those who have and allow them to languish is particularly inhuman. Almost like that icy Botox'ed face of hers.
Best,
Kim
"You're hungry? Here, I have a sandwich...just watch me eat it, you'll love it.
Oh looky here, some crumbs fell on the ground....and they say the trickle down theory don't work! Here's proof it does!"
OBAMA-BIDEN 08---give till it hurts and then through in another $10!
We privatize government functions on the insane premise that private companies can provide services AND profit for less than the cost of government providing services. Just what is it exactly that a private company can do that government can't? We give hundreds of millions to oil companies because, what, we're afraid without "incentives" they might decide not to make billions of dollars a month in profits? We actually legislate that its illegal to negotiate drug prices, purchase them on global markets where prices are orders of magnitude lower, give monopolies to manufacturers and then we call it a free market and wonder why health costs are out of control.
Corporations aren't people. Its wrong that they're treated as people, accorded "rights" and protected as people. Its unconscionable those rights and protections are at the expense of the people. Its not the responsibility of local community groups, churches, charities to assist people. We'd formed a national community group to do that. Its called the United States government. They've just been embezzling our money instead of doing it.
A wonderful essay/post, once again, we are in the exact same stream of consciousness. Thank you for all your efforts. Agape.