Wednesday, June 22, 2011

A second letter from a mom to Governor Abercrombie about S.B. 1274

This is the letter that Hannah M.'s mom brought yesterday for the Governor:

I am here today on behalf of my daughter—and, indeed, my entire family—to respectfully request that you veto Senate Bill 1274. If you allow Senate Bill 1274 to take effect, it will be devastating to Hawaii families with disabled persons. I am begging you, please, don’t take away the only rights we have to help our disabled children and community. I ask you to look into your heart—not just at budgets-- for the implications of this proposed bill. Please take the wise and humane course of action.

If SB 1274 is not vetoed, it will have a profound impact on my entire family. By allowing SB 1274 to pass, you will be endangering my daughter’s life as well as the lives of many others like her in the state. Vetoing SB1274 will harm no one whatsoever. Allowing it to become law most certainly will. We--our daughter included--are being stripped of our current rights--this from an insurance division and a Legislature that are supposed to be responsible for overseeing the safety of the Hawaii citizens they are sworn to protect.

Please allow me to tell you about my daughter, Hannah. She is a five -year old girl who has a life-threatening seizure disorder known as Lennox Gastaut Syndrome. There are some days that she has had over 1,000 seizures per day. Despite these inhuman challenges, she struggles with all her might every day to learn to walk and to communicate, and she is unfailingly appreciative of the help she receives. Our daughter has numerous physicians who have provided her health care plan with prescriptions and letters of explanations for why she needs 24/7 skilled nursing care. Her health care plan was reviewed by a physician on the health plan’s staff and denied. The part of this that is so concerning is that the health care plan’s physician who provided the denial is not even a neurologist; nor has he ever seen our daughter as a patient; nor is this physician familiar with her care plan.

The health plans told us that, if our daughter needed 24/7 care, then the most “cost effective” place for her would be placement in an institutional setting. We feel strongly that such a move would be the most inhumane choice for a five -year old child; it would amount to banning her to an institution away from her family forever, and depriving her once and for all of the hope of a meaningful and fulfilling life. We worry that such a move would send a horrible message to her brother—a message that family does not matter and that children can be thrown out like used Dixie cups.

We exercised our right to appeal what we think is a medically and morally bad decision, and so far, our daughter has the care she needs to remain with her family, school, and community. Evercare seems so sure that you won’t veto SB1274 that they have decided again to cut my daughter’s life-saving nursing. They have conveniently chosen the date of July 1 to start the reduction, and that just happens to be the first day that we will lose our consumer rights. They know that we won’t have any recourse after June 30. Do you believe that Evercare is looking out for my daughter’s best interests by doing this or looking out for their pocket books? I need you, Mr. Governor, to help me to look out for my daughter’s—and other sons’ and daughters’--interests.

Does institutionalizing a little girl who tries so hard to get better sound like something that constituents would support? The impossible part about this scenario is there is no facility in Hawaii to accomplish this “institutionalization.” Where do they want to send my medically fragile daughter? Were they thinking about taking our daughter from us and placing her on another island or, worse yet, sending her to another state? If my daughter is placed in an institution, she won’t have her family or her right to a Free Appropriate Public Education. They will put her in a crib bed that is caged and not allow her to live her life. In essence, they would be putting her in a jail because of her disabilities. We treat our criminals better. What crime has my five year-old child committed that she deserves this fate?

Senate Bill 1274 will unjustifiably and irreversibly damage health care consumer protection in Hawaii. Our external review law, H.R.S. § 432E-6, has served health care consumers well for over a decade. It gives health care consumers a more level playing field against powerful insurance companies. Consumers have access to experienced advocates to assist them with preparing and presenting their cases in a manner consistent with Hawaii’s medical necessity law. Decisions are made by a local expert panel, and consumers are able to present expert testimony and other evidence in a fair, but efficient, hearing process.

While Hannah has severe disabilities, she is a lovely and loving child. She works hard every day to master new skills. She is learning against great odds, and her quality of life is very high. So is the joy that she gives to us, her caretakers, and our friends. Don't eliminate Hannah's rights and extinguish her joy. Please Veto SB1274.

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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.