I’m a parent of a disabled child, and I’m afraid for his future if the Affordable Care Act is repealed. Our son is a medical miracle, and there is no other time or place in history where a child with such serious physical disabilities could survive.
The American Health Care Act, the Republican plan to repeal and replace the Affordable Care Act, is a declaration that tax cuts for the rich are more important than providing medical care to the poor and disabled.
We found out that our son would have serious medical problems during a routine prenatal appointment. On the day the most new parents learn whether they’re having a girl or a boy, we learned that our son was missing parts of his face. We considered terminating the pregnancy, because we were terrified that our son’s life would be short, and that he would only know pain and death.
We chose to continue the pregnancy, because we wanted to give him a fighting chance at life.
Our son was born, and at the moment when normal babies draw their first breath to let out a cry, James didn’t. He was intubated, put on a ventilator, and rushed to the neonatal intensive care unit. Our son spent the first nine months of his life in the hospital, and during that time, his medical bills hit the million-dollar mark.
Before the ACA, our insurance policy, like many others, set a “lifetime limit” on health benefits, to protect the company against having to pay too much for a person’s medical care. If lifetime limits had been in place when James was born, he would have exceeded the maximum value of his life before he ever came home from the hospital.
Today, our son is a medical miracle, but he’s also just a normal 6-year-old kid. He rides his bike to school, plays Pokemon and complains about doing his homework. But he will always be bad at breathing. He depends on a tracheostomy to maintain his airway, and if his tube becomes plugged or dislodged, he will die.
Every night when we tuck him into bed, we hook him up to a ventilator that will breathe for him through the night, because his tiny body can’t manage to pull enough air in and out of his lungs while he sleeps.
There is no way that our family, or any middle-class family, could cover the full cost of care for a severely disabled child on our own.
Jenny McLelland, Clovis, mother of a disabled child
Our son will always depend on machines to keep him alive, and those machines will always cost money. Right now, our son’s medical care is covered by a combination of employer-sponsored health insurance, Medi-Cal obtained through a waiver program, and out-of- pocket payments from our family.
We’re a middle class family. My husband is a teacher. I was a police officer but was injured on the job, now I’m a stay-at- home mother to our children. There is no way that our family, or any middle-class family, could cover the full cost of care for a severely disabled child on our own.
The AHCA is a threat to all disabled children. Our son stands to lose our private health insurance due to the return of lifetime limits. The ACA text that banned lifetime limits is contingent on the 10 essential health benefit regulations staying in place, so any changes to the law that eliminate regulations on essential health benefits will allow insurance companies to bring back lifetime limits.
We all know from personal experience that if insurance companies can find a way to weasel out of paying for medical care, they will do it. Without the ACA, we will be locked into paying for a family insurance policy that will have no obligation to pay for our sick child’s medical care.
We’re very fortunate to live in California, a state that has been a leader in providing cost-effective, in-home care to disabled residents through Medi-Cal. The waiver program that allows our son to access Medi-Cal only exists on paper in many other states – their programs have huge waiting lists, where kids are forced to live in institutions, apart from their families, for years in order to access Medi-Cal.
The AHCA makes drastic and unprecedented cuts to Medicaid, and those cuts will hurt disabled children.
I didn’t set out to become an activist. I’m just a mom. I love my child and I want him to have a fighting chance at life. The ACA gave him that fighting chance. I’m begging our politicians to not take it away.
Jenny McLelland of Clovis is a former Fresno Police Officer and mother of a disabled child. Connect with her at firstname.lastname@example.org.