I am the mother of an 11-month-old baby girl, Cassidy, who has CCHS (Congenital Central Hypoventilation Syndrome), a very
rare genetic mutation. Our union health care company recently changed
"paperwork" companies,at which time we were told that we were getting special pediatric respiratory services that we were not entitled to
and it [coverage] would end!
We scrambled to make other arrangements since Cassidy is ventilator-dependent and suffers from frequent "blue
spells" that require oxygen to be administered asap. We were finally able to get the pediatric respiratory coverage
in a state-sponsored policy for a fee. We were starting to breathe a little easier about the situation until we called my
husband's employer. We were told that we could not remove Cassidy from the original health policy because it was a self-funded
insurance plan and federal regulations prohibit switching to a different plan.
So here we stand stuck in the middle of a paperwork nightmare, and throughout this entire process it seems that everyone has
forgotten about little Cassidy, who is paying the price. No one we have spoken to has ever heard of these federal regulations before
but the fund's attorney insists that my daughter can not be removed. The state insurance commission claims that their hands are tied
because self-funded policies are beyond their jurisdiction. And she cannot be enrolled in the state-sponsored program as long as she
is covered under the original policy.
We were advised that perhaps we should consider giving her up for adoption, institutionalizing her,
or we could get share of cost Medicaid were we must spend more than we make each month to get assistance. I am not quite
sure where we could plug our daughter Cassidy's ventilator when we are homeless and living under a bridge.
What is wrong with the country? I am sick to my stomach and my daughter's future is uncertain. I just want to see her grow up!
Orange Park Florida