Obamacare and Trisomy 18 Families — Some facts on the table.

A discussion broke out this last week on Facebook about the Affordable Care Act (aka Obamacare) among our parents, ¬†sharing fears fueled by conservative media outlets that Obamacare will inevitably lead to rationing that will deny care for their disabled children or children they know. ¬†I thought I’d share a series of posts this week about some details to keep in mind.

CaptureMy approach in representing families’ needs in National Policy discussions starts from the fact that the ACA is the law of the land and regardless of our political leanings or fears we need to work together to make sure it meets the needs of our mothers in pregnancy and our children who are medically fragile and have special health care needs as a category within the Disability community as a whole.

With that in mind, this slide from the Catalyst Center’s recent presentation at the AUCD Annual Conference points out the issue of some States with Republican Governors, they have chosen not to take the Federal Help to expand Medicaid in their state to provide additional benefits to families uncovered in other employer plans.

Under the ACA, more people qualify for Medicaid in 2014. In 2014, many states expanded their Medicaid programs to cover people at higher income levels. Even if you didn’t qualify for coverage in the past, you may qualify now. You can apply any time during open enrollment, which began October 1 and continues through the end of March, and find out if you or your child qualify for expanded coverage in 2014.

For our families with living children with Trisomy 18 that are often hit hard financially to provide for all the adaptive equipment or feeding supplies or even the enteral feeding formulas that nourish their tube-fed child, it shouldn’t matter what state you live in and what political party controls the government in your state — but right now it does! I’d like to see that changed so all our children and mothers are covered equally. You can read the full presentation from the Catalyst Center here:


  1. There has already been a case in my state where a girl was denied medical care due to having Cerebral Palsy. She was taken to the ER for pneumonia and was turned away because “her life has no value so it’s not worth fighting for”.

    • To clarify, that’s not my view. That’s what her parents were told in the ER. This occurred since ACA went into affect.

      • I’m a doctor. That’s not true. Whoever said that in the ED was in violation of EMTALA law. There are no “death panels” that the right wing has scared everyone in to believing. It’s just that palliative services for death and dying will be honored as a valid choice for terminal (not disabled) patients. It is still up to the patient and family to make this choice but instead of paying out of pocket for choosing to go uninvasive it will also be covered. Nobody is being forced into anything and hospitals support ACA because they will get more pay and have to write off less uninsured care. Some docs do have their panties in a bunch though because the writing on the wall is they will not make as much. So please before you listen to any garbage a disgruntled doctor still making 250-300k tells you, know your rights. And put them in their place because if this story is true, it is in violation of so many laws that mom could make that doctors head spin how fast a lawyer would jump on her case.

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