Wednesday, June 22, 2011

My letter to the Governor why he needs to veto S.B. 1274

Five children with multiple disabilities, along with their parents, siblings and nurses, attended yesterday's policy briefing on SB 1274. Many other parents came without their children. We did it because our children have no voices of their own, and we wanted Governor Abercrombie to see the faces of those who will be hardest hit if he does not veto this bill.

The governor was not concerned enough to show up. Instead he sent his health policy analyst, who stunned everyone by admitting the state still has not bothered to check with the feds if S.B. 1274 is even necessary. The bill says it is to meet requirements of the Affordable Care Act, but in six months nobody has bothered to find out from the source if that is true.

The parents and nurses I've spoken with since yesterday's meeting have been unanimous in their incredulity that the Governor's office is so unaware, and apparently uncaring, of the impact this bill will have on his state's most vulnerable citizens.

Parents who spoke of the bill's impact on the lives of their children were mocked twice for being overdramatic.

I can promise that none of us were. All five children had been the victims of life-threatening cuts in services by their Medicaid plans which were subsequently overturned directly (or indirectly in one case) thanks to the independent insurance appeals process.

I had prepared a letter to the Governor, and read it yesterday. I'm including it here.

To Governor Abercrombie:
Hawaii’s current insurance division appeals law is the only thing standing between my daughter’s life and the decisions her Medicaid provider makes on the basis of profit rather than what Hannah needs. No harm will come to anyone if you veto SB 1274.

If you do not veto SB 1274, Hannah’s only ability to challenge these decisions will be an Administrative Hearing at the Department of Human Services. The problem is DHS has no interest in protecting the rights of vulnerable children like our two Hannahs, or any of the other 260,000 people on Medicaid. If they did, Kenny Fink and Patti Bazin would not have sat back and allowed the state to get hit with a second wave of federal civil rights investigations, over the same cuts in the same services to the same two little girls by the same provider within fifteen months.

In April 2010, DHS acknowledged the health plans were committing federal regulatory violations when they instituted a so-called “corrective action plan” against at least one plan.

Since then, different families have been keeping CMS informed of ongoing regulatory violations. I’ve brought with me copies of my emails to CMS from the past six months documenting ongoing regulatory violations, and the emails back from CMS acknowledging a wide array of infractions.

As long as DHS continues to be unable or unwilling to provide oversight to the health plans, to make them comply with federal regulations, H.R.S. 432E-6 is the only thing that gives our families a level playing field when we’re trying to appeal life or death decisions made by our health plans. Going up against a multimillion dollar corporation is already making us David versus Goliath, but thanks to HRS 432E-6, we go into those battles over our children’s lives with professional advice, letters from our doctors, and the other evidence we wouldn’t know to get on our own. Our children’s doctors and therapists have a chance to testify on their behalf, supporting the prescriptions that have been denied, the necessary medical equipment like catheters and feeding tube extensions that have been denied, and the nursing services that keep our kids out of institutions denied.

If the insurance plans want to complain these appeals cases are costing too much, maybe the fact these bad medical decisions are bringing federal investigations down upon the state means the problem is with whoever is making those decisions. Not with our kids, and certainly not the law itself.

One of our families got chilling news from CMS. The bottom line is, we can all continue reporting the health plans’ violations of federal law, but as long as the state of Hawaii continues to refuse to do anything about it, CMS can’t protect our legal rights.

The only person right now who can is you, Governor. When you campaigned, you promised to protect our most vulnerable people. They are the people who will be hurt the deepest if you don’t veto SB 1274. Don’t take a chance with their lives. Do no harm. Please veto it for them.

Summer Harrison

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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.