The mother and daughter I described in the previous post made a strong impression on me because their poverty was so evident. When we consider families needing social support we often think of people who will not have food, housing or medical care without collective responsibility.
But I also visited families who lived in affluent neighborhoods in nice houses.
A family had a son who suffered a catastrophic and unforeseeable illness. They built a house to be wheelchair-accessible, bought a special van, changed their work schedules, revised all their life plans, and strove to make a normal life for their other child who did not have a disability.
They were committed to providing their son with the rehabilitation and medical care that would give him the best chance in life. They were thinking ahead to what he would need as an adult. Barring a miracle, he would be totally dependant for his whole life. If there is a miracle out there, these parents will find it. Their love and commitment to both their children is amazing.
When we think of people vulnerable to cuts in social programs, we don’t always think of families who look well off. But a family like this absolutely needs and deserves support. Even two parents working good jobs do not have the kind of money it takes to cover the expenses, or the ability to provide 24/7 intense care while working those jobs and raising other children.
A mother who has successfully raised a Down Syndrome child has a lot to say about her battle to provide for her son…
Oh, and have I mentioned this? I, who through struggle and persistence and crisis, mastered the service and funding system, have a reasonably happy kid. He still and will struggle through his lifetime with mental retardation and related behavior and communication issues. He lives in federally subsidized housing, attends public school as an intensive-needs student, gets his healthcare through medicaid, and has 24 hour care from direct service providers. When you make the system work, you can build a community-based life for your child.
Only a small percentage of those who need this level of care can get it. Without advocacy, forget it. Without continued funding of education, healthcare, vocational, and independent living services, this will all go POOF. The waitlist, even in a small state like Alaska, has over a thousand people on it, many for years. Most languish at home with aging parents or siblings. Some are receiving “care” in corrections while they try to find someone to “take” them. Some are homeless.
My son’s cost of care is over $200,000 a year. Thank you, taxpayers. And the Chinese lenders.
As Governor, Sarah Palin recently slashed funding for a program for special-needs youth.
No civilized society abandons its citizens in need. We have to honestly confront the truth about the real cost of caring for children and adults with disabilities, and do it right.
I’m waiting for Sarah Palin to make good on her promise to be an advocate for children with disabilities. She doesn’t have to wait until she’s in Washington. Governor Palin can take another look at her state budget, and start walking the walk, in Alaska, today.