When you are the mother of a child with severe disabilities you can't
help but worry about what's going to happen to her once you are gone.
When she is your only child, and you have no obvious relatives who are
likely to survive you and care for her, it feels perilous. You really
hope your society has a good social safety net. That is one reason I
am moved to speak up against the proposed cuts to Medicaid.

My daughter, Freya, is 17 years old and has severe intellectual
disabilities and moderate physical disabilities. She needs assistance
with nearly every aspect of her life, from changing her diapers to
eating to getting around the community. Helping her meet her needs has
been transformative and enlightening, and also deeply challenging.
Medicaid has helped immensely.

I had my daughter when I was 20 years old, a sophomore in college. As a
single mother of a profoundly disabled child, I completed my
undergraduate degree and a Ph. D. in physics. I am proud of that, and I
could not have done that without Medicaid to provide for my daughter’s
medical expenses.

Freya was on Medicaid shortly after she was born, because no insurance
company would sell a policy to a newborn baby, and she was not eligible
to join my policy. At 6 months old, I was able to purchase her a
private policy that I have paid for out of my pocket for the last 17 years. But she
stayed on Medicaid, thank goodness, which paid for the things that the
private insurance didn’t. I had no idea how much that would be until
she needed open-heart surgery just a few weeks after her private
insurance coverage began. There were so many co-pays and deductibles
and non-preferred provider charges, we really could not have managed
them.

I now work as a physicist part-time, while Freya is in school. My
income is high enough that she is no longer on Medicaid, but now gets
her secondary coverage through another government program, the
Children’s Health Insurance Program (CHIP). She is supposed to gain
medical coverage through Medicaid when she turns 18 in a few months.

But what will happen to her coverage, if House Republicans are allowed
to cut it by a third as they
proposed back in April? Or worse, turn it into block grants,
meaning the money that goes to states will not keep up with the need.
Because Medicaid is an entitlement program, everyone who is eligible is
guaranteed a spot; that would not be the case with block grants.

As Freya’s mother, it keeps me up at night. For those of you who are
reading this, please do not allow our leaders to balance the budget on
the backs of the disabled. Medicaid is the main source of care for
people like my daughter and seniors. She and others like her are
deserving of a long and dignified life. Thank you for your support!

Click here to read selected stories from more MomsRising members about how they've been helped by Medicaid.