Special Needs II A Middle Class Family

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.

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8 responses

  1. Special Needs II–A Middle Class Family…

    Sarah Palin has promised to be an advocate for special-needs children in Washington. But what is the Governor of Alaska waiting for? Why did she slash programs in her own state? An Alaskan mother of a Down syndrome son speaks out….

  2. Nancy says “As Governor, Sarah Palin recently slashed funding for a program for special-needs youth.”

    Did you set out to write something misleading or did it just happen?

    Covenant House, the program in question, had contributions from the State of Alaska in the amount of $1.33 Million in 2007 (according to their IRS Form 990.)

    State contributions for 2008 were originally proposed by the Legislature at $5 Million, but were reduced by Palin to $3.9 Million.

    An approximately 300% increase (from $1.33 Million to $3.9 Million) is hardly “slashing funding.”

    Don’t believe everything you read in the newspapers or on the blogs. Do some digging on your own and find the real facts, not just what fits the narrative in your head.

  3. I’ve been doing plenty of digging the last few weeks because I can’t pull my eyes away from this soap opera.
    Three seconds on google got me the reference for the funding situation–that the Legislature approved the funding because of increased need. Alaska had a budget surplus at the time, so the cuts were philosophy, not necessity–
    “Covenant House has seen a 58% increase in its average daily census. In order to continue to meet the needs of Alaska’s youth, Covenant House must relocate to a new, larger facility in downtown Anchorage. Youth from around the state utilize Covenant House’s services and a new facility will have statewide implications. Providingeffective housing and social services in turn lessens Alaska’s rate of youth violence, gang activity, drug and alcohol abuse,and incarceration.Covenant House raises $3.5 million in operating funds per year. In addition, Convenant House intends to leverage the statefunding 2:1 from private and federal.”
    http://64.233.169.104/search?q=cache:bKzi78YnQzcJ:www.legfin.state.ak.us/BudgetReports/GetBackupDocuments.php%3FYear%3D2008%26Type%3Dproj%26Number%3D48722%26NumberType%3DLFD+covenant+house+alaska+increased+need&hl=en&ct=clnk&cd=5&gl=us

  4. I vociferously approve of choice for everyone.

    Roe vs. Wade should is not to be reversed. Sarah Palin has obviously never seen “If these Walls Could Talk” (movie directed and played with Cher) along with some other well-known’s that encompass the years 1952 to 1996. People back then that had Down syndrome babies or children that required more than the norm were institutionalized and greatly harmed in those places. Albeit most institutions have changed a great deal…there are some left…and there are some parents that still put those children up for adoption or institutionalize them.

    This Middle Class Family is doing what they choose to do and care for their child. This is the same metaphor as our elderly that we are quick to sign on the dotted line and have someone else wipe their bottom. I know this both expensive monentarily and emotionally tapping the family … but it IS extroadinary in our day and age. Yes, I do believe they shoudl have assistance at the very least. How much do children in Insitutions cost, that we can’t offset their ability to stay at home and give them something?

    I must say, Sarah might have had me in her corner until the Roe vs. Wade. If she, the Catholic church are not willing to put up for adoption and find ALL the children of rape victims child a home, or children, mothers that unexpectedly weren’t paying attention, or drug atticks, alcholics…etc. and they are not will to fully FUND the babies journey to a better home – then they need to extinguish those aburd opinions that are so reminesent of the 1940′s.

  5. sorry for the spelling and grammatical errors…I am a bit emotional about this sort of heroism we point out that should be more norm. Because it’s not, our system is burdened taking care of many of our children, children that become adults. I know a couple….97 and 84 that are taking care of their 65 year old Down syndrome daughter. The father just died and the story goes…he was more upset as he lied dying in the hospital for his wife who would be left to take care of Jessica the daughter. She is a teeney 5’1″ redhead that has always proudly gone everywhere with Jessica and now how can she take care of her the way she would like to. I have enormous respect….but, I am well aware that they never had the Choice to choose a different outcome.

  6. As a parent, i will say that the decision to have a child is one of the most profound and life-changing we will ever make. As a home care nurse i will say that Government can never come close to doing what Families and Friends do for the ones they love. But to coerce decisions and cut support for the families and friends of the people in our society most in need is a perverse twist on social darwinism. not survival of the fittest, survival of the richest.

  7. Nancy,

    Your interpretation is flawed, for two reasons.

    First of all, not giving an agency or an organization everything that it asks for is not equivalent to “slashing funding”.

    More importantly, in this specific situation, the money requested by Covenant House is for a multi-year capital expenditure. The State of Alaska will provide the funding over several years, instead of appropriating all in one year – so says the Executive Director of Covenant House Alaska…

    September 4, 2008
    Contact: Deirdre A. Cronin
    Executive Director
    907-339-4203…
    We are grateful for the support we have received from Governor Sarah Palin, the Alaska legislature and our Congressional delegation over the years.

    Despite some press reports to the contrary, our operating budget was not reduced. Our $3.9 million appropriation is directed toward a multi-year capital project and it is our understanding that the state simply opted to phase in its support for this project over several years, rather than all at once in the current budget year.

  8. Let’s hope they get the support. Governor Palin’s family will benefit from social programs that wouldn’t exist if it were not for disability activists. You never know when you will need a safety net.

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