Sunday, January 30, 2011

Who will step up to say our "less than perfect" children have any less a right to life than their "more normal" peers?

This is what is implied every time a politician says they have to cut Medicaid services.  Read the individual stories -- the biggest cuts are not affecting people who are poor or unemployed but the families caring for their children (of any age) with disabilities.

Our federal laws happen to give children and adults with disabilities the right not to be institutionalized. It is hard to imagine any set of laws more supportive of the basic values of the American family than one which ensures our children and our grandparents can continue to live at home.  It's a set of laws that recognizes that the government has a responsibility to keep families together, since none but the very richest could ever afford to pay for what it takes on their own.

When politicians start talking about cutting services to these children and grandparents, they are ripping apart the very core of the family, forcing agonizing decisions between the heightened risk of death versus institutionalization.

The unnecessary pain, delays in medically necessary treatment, stress and basic indignities that are forced upon families caring for their children or grandparents with disabilities is inhumane.  At the lowest level it involves an annual savings of $1500 in exchange for creating a bloody wound in a child's stomach twice a year.

At the highest level, children and, particularly, young adults with disabilities are being irretrievably harmed, and in some cases, killed.  Death can come from a lack of transportation to dialysis treatments, sepsis from a lack of dental care, or a simple refusal to fill a doctor-ordered prescription.  The worst deaths are the ones that come because families have tried so hard to avoid institutionalization, but simply can't match the intensity and type of care that has been taken away due to "budget cuts."

Too many of these "budget cuts" are resulting from the sixteen percent annual expansion in the privatization of Medicaid (and Medicare).  That's the rate at which states are turning over their Medicaid services to private contractors like UnitedHealth, Wellcare, Wellpoint, Aetna, Humana and others.  Instead of paying bills for actual services incurred, these plans make their profits off of getting paid a per capita rate from the state for every enrollee, and spending as little of it as possible.

In my opinion, the government waste of giving private Medicaid insurance companies more than $1.1 billion a month in profit is substantial and should be eliminated.  Shareholders are benefiting while children are harmed. 

Within the vast online community of parents caring for their children with disabilities, is is not uncommon to hear a mom talk of her child as a "blessing."  Our children teach us lessons in patience and the importance of the little things in life on a daily basis, and many of us celebrate the fact our children will never come to learn jealousy, hatred, greed or envy.  

So for all you politicians and health insurance executives who keep trying to cut Medicaid home services for my little girl and all the others like her: why won't you come out and tell me why you value their lives so little?  Are we a culture that "throws away" those who are too old to contribute financially, or whose disabilities, whether from birth or accident, prevent them from living alone? 

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About Me

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I'm the mom of a child with disabilities. Hannah's first neurologist said she might never develop beyond the level of a 2 month old infant, and there wasn't anything I could do about it. The brain damage was just too severe. Nine years later, she walks, uses a touchscreen computer and I've just been shown she can learn to construct sentences and do simple math with the right piece of technology. Along the way, I discovered I needed to teach myself what Hannah's rights to services really were. Learning about early intervention services led to reading about IDEA and then to EPSDT. I've been waiting for the Obama administration to realize the power and potential of EPSDT for the medical rights - including the right to stay at home with their families - of children with disabilities. The health reform people talk about long term care, and the disability people talk about education and employment, but nobody is talking about EPSDT. So I am.