By Lisa M. Pugh
Dear Gov. Sarah Palin:
I am writing to introduce myself. I am not a "hockey mom." But I do like to consider myself an "ability mom."
I am one of those "special needs parents" you spoke directly to during your convention speech earlier this month. You pledged to be an advocate for children like my 9-year-old daughter with autism and a rare developmental disability.
As much as I want to be excited about your offer, I wonder if you have had much time to think about what being a disability advocate means.
So much of your presidential partner's platform and your own voting history is not supportive of disability rights and support for families. A search of the platform on your campaign Web site does not even return the word "disability." I hope your televised pledge to be an advocate for my daughter and others means you will soon shift to a "whole life" focus of valuing children with disabilities.
It is challenging for a middle class family like mine to raise a child with a disability. But I have met families with fewer resources for whom this task is a daily struggle to survive.
Here in Wisconsin we have strong support for people with disabilities. But more work is needed to ensure a basic quality of life. What families need is a strong, comprehensive and fully-funded Medicaid program -- in every state -- that helps families work, stay together and continue to raise their children at home.
Comprehensive Medicaid services can be the difference in children getting the critical therapies they need to be more productive. Medicaid services in many states are sorely underfunded. It is sadly not uncommon to find elderly parents, even here in Wisconsin, who continue to care for an adult child, young parents who are forced to quit work because they cannot find care for a child with behavioral challenges, and children who go without dental care.
Are you strong enough to advocate for this?
When the federal government refuses to fully fund special education, then local school boards such as ours in Madison are forced to make tough decisions. And as a result, our children are the first to suffer.
They are taught in closets down the hall. They spend time watching Barney videos in high school. They often do not have friends.
Will you advocate for adequate public school funding, increased teacher training and support in universal design, differentiated instruction and inclusion? Will you support technology that can make experiences in our classrooms accessible to all? Will you recognize the importance of offering our young people meaningful independence and employment instead of a life sentence in their parents' basements?
Finally, will you support adequate health care coverage for all families in this country? A "whole life" perspective for children with disabilities ensures that a family raising a child with a disability in Wisconsin, Alabama or Alaska can get the care they need without crippling medical bills.
This is not the case now. I know because I have met couples in Wisconsin who have declared bankruptcy and, as a volunteer advocate, I have counseled parents in Madison who are waiting years for the help they need for their child. I know families who are on the brink of giving a child over to foster care.
This breaks my heart. Will it affect you enough to be an advocate beyond just words -- an advocate of action?
I want you to know that we "ability moms" are not one-issue voters. I have three children and a husband who is losing his job. I stay home, in part, to manage my daughter's care. We do not know how we will be able to afford to stay in our home in a few months. And very soon we will not have health care.
Mothers like me will be watching you closely in the next few months. We do need a true advocate in the White House. We "ability moms" wear lipstick, too.
Pugh lives in Madison.