This is a story about how four moms and a dad are changing perceptions of the civil rights of children with disabilities.
Late last week it was learned that the Office for Civil Rights of the US Department of Health & Human Services is opening official investigations into complaints that the state of Hawaii is violating the civil rights of people with disabilities.
The complaints were filed by four Hawaii parents of medically fragile children, and the mom of a young quadriplegic man.
The civil rights violations that are being investigated
The violations stem from civil rights granted through a Supreme Court decision in 1999. What's become known as the Olmstead Decision ruled people with disabilities had a civil right to receive the medical services that enabled them to stay at home, rather than being segregated into institutions. These services are provided through state Medicaid health care plans.
This latest investigation mounted by the OCR may be the first to recognize that children with disabilities have a second, inalienable right to medically necessary treatments and services that state bureaucrats cannot deny, limit or reduce.
For years, these treatments and services have been denied, limited and reduced by state bureaucrats and the for-profit private insurance companies that are winning state Medicaid and Medicare contracts across the country.
With the recession, bureaucrats and insurance companies have been looking for ways to save money without people noticing. The families and caregivers for children and adults with disabilities have been an easy target. Usually they are just too exhausted to complain. They are also extremely vulnerable to coercion (such as 'don't ask for so many hours of help or we'll throw your kid in an institution').
We (and I'm one of those moms) are a small population, but cuts to the Medicaid home services that enable our children to live at home with us can give a for-profit company or state a big bang for the buck. Here in Hawaii, for instance, the 5,663 people receiving home nursing and caregiving services through Medicaid cost the state $120.8 million in 2005 (the most recent year I have both sets of figures). Our kids are expensive to keep at home, but the alternative is locking them away in big cages (safety beds) in institutions. The higher risk of death in an institution or without proper home care is acceptable, as state employees and insurance company gatekeepers frequently tell us.
We have all been told, in one way or another, that it wasn't cost-effective for the state to pay to protect our children's lives.
The problem is national in scope
Back on June 29, 2009, the Center on Budget and Policy Priorities reported
"at least 39 states have made cuts that harm vulnerable residents to help close budget gaps."
In line with OCR's decision to investigate Hawaii's Medicaid cuts as civil rights violations, the similar cuts in all thirty-nine (at least) states may now constitute civil rights violations.
Hawaii is at least the seventh state in the past year where Federal regulators have intervened on behalf of children and adults with disabilities. The Department of Justice stepped in to a federal courtroom in North Carolina, Kentucky is under investigation by the OCR, and federal Medicaid regulators (CMS, or the Centers for Medicare and Medicaid Services) have intervened in Idaho, Colorado, Alaska, Tennessee and Hawaii.
Class action and private lawsuits alleging similar civil rights violations are pending, have been filed or have been decided in at least fifteen states in the past year: Arizona, California, Colorado, Georgia, Hawaii, Idaho, Illinois, Kentucky, New Jersey, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee and Washington.
Federal judges in only two states, Hawaii and South Carolina, have decided that potential cuts in services didn't matter since no harm had yet been done. The Department of Justice physically intervened in a similar court case in North Carolina, to ensure that potential cuts were put on hold.
Two federal cases in Georgia have decided that state officials and Medicaid contractors cannot over-rule a prescription from the doctor of a disabled child on Medicaid. They have a potential financial conflict of interest with the medical needs of the child, and are also prohibited by federal Medicaid regulations from providing case management services to kids as well as adults with disabilities.
In a June 30, 2009 filing in the Federal Register, CMS clearly recognized the potential conflict of interest between state Medicaid gatekeepers and the actual needs of individual children and adults with special health care needs. Six weeks later, CMS gave the state of Idaho written instructions prohibiting the state and its Medicaid contractors from denying, limiting or reducing treatments and services prescribed for children with disabilities. They can review them to ensure they are not fraudulent, but not change them otherwise.
Meanwhile, back in Hawaii
As mentioned earlier, Hawaii is one of two states where federal judges have been completely unsympathetic to the civil rights of people, particularly children, with disabilities.
This blog has been describing parts of the battle families have been waging here in Hawaii over the past year.
Blocked from judicial relief, in July 2009 I filed a complaint with OCR on behalf of my ten year old daughter Hannah. There was nowhere to go except up.
Since 2002, I've been waging private battles with the state over Hannah receiving the medical care and educational services she's entitled to under federal Medicaid law. My daughter's brain damage from birth was so severe her head is still only the size of a six month old infant's, but she has had to have her own lawyers since she was three.
Last year I decided to take my fight on my daughter's behalf public, and help other families in similar situations. The stories are horrendous, but until now very private of the four families I helped file complaints with the OCR over the past six months.
Four of us have children who are medically fragile. They can't take food by mouth but instead get liquid diets through tubes in their stomachs. Two need machines to help them breathe. Three have life-threatening seizures that cannot be controlled and can erupt without a second's notice. My daughter is the oldest, the youngest is almost four.
Two of us have had the state of Hawaii threaten us with institutionalizing our children if we didn't back down. Two more received similar threats from the two for-profit insurance companies who hold the contract for Hawaii's Medicaid home and community based services.
Our fifth family is that of a 21 year old who broke his neck in an accident. His mind is fine, but he can't turn himself over in bed, feed himself, or even go to the bathroom himself. Medicaid says he should be fine staying home all day alone, just hoping nothing happens that he would need to be moved.
It's fairly mortifying as a parent to be told your child's well-being, and very life, aren't worth, say, any more than $6,000 per month. To an outsider that may seem like a lot, but children like my daughter require 24/7 skilled line-of-sight nursing in order to remain in their homes.
Without it, Hannah would have to be shut into a giant crib with three foot high walls of metal bars, and a roof to match. She's too mobile to be left alone, and an institution doesn't have the staff to watch her all the time.
Instead, it costs about $30,000 a month to keep Hannah at home. Right now, at least two-thirds of that is being paid by the federal government.
That $30,000 goes completely into local job creation. The ARC of Hawaii estimated back in 2003 that for every $10 million the state cut from it's Medicaid budget, it lost over $21 million in employment, services and taxes.
In 2008, Hawaii paid out about $167.5 million to provide home nursing and care services for medically needy children and adults. At that time, the state's share was about 45%, or $67 million.
As of mid-January, Hawaii had received about $184 million in federal stimulus funds that could only be spent on Medicaid. Presumably, about eight percent of that is going straight off the top to the two for-profit insurance companies that have state contracts to provide services to the medically needy community.
One of those two companies is UnitedHealth Group. According to their third quarter 2009 financial releases, fifty percent of the company's total income derives from the twenty percent of its enrollees who are covered through state contracts to provide Medicaid and Medicare services.
UnitedHealth's net earnings in third quarter 2009 were up over 13% from the previous year, to $1.04 billion.
Why does a company that clears $4 billion a year have the right to decide how much a child's life is worth?
