A young adult woman with developmental disabilities is holding a tablet. She's looking at the camera and has a big smile.

Medicaid Saved Bob’s Daughters’ Lives but Also Creates Constant Struggles

By Bob from New Jersey

Medicaid saved my daughters’ lives, and I am eternally grateful for it.

Annika and Maya were born 19 years ago with significant developmental disabilities and complex medical issues. Medicaid gave us easy access to one of the best children’s hospitals in the world, Children’s Hospital of Philadelphia (CHOP), which is located less than one hour from our home.

A young adult woman with developmental disabilities is holding a tablet. She's looking at the camera and has a big smile.


Annika and Maya were seen and cared for by some of the best specialty doctors in the world, including neurologists, gastroenterologists, geneticists, orthopedists, and feeding specialists—and their care was covered by Medicaid. These doctors literally saved Annika’s and Maya’s lives and gave them the best chance for a quality life.

Many times, when we took Annika and Maya to another hospital for urgent care, we were told they could not adequately care for them and they, subsequently, sent us to CHOP.

Maya passed away in 2014 after suffering from a fatal seizure. She lived a full, rich, and joyful life, nurtured by the exceptional support and overwhelming love of our family and friends. She is deeply missed.

A few years ago, [our state] Medicaid agency informed us that CHOP would no longer be in-network, so we should plan on using New Jersey hospitals. However, there is no comparable hospital in [the state].

The Arc of New Jersey advocated for CHOP to become in-network with [our state] Medicaid agency again. This did not happen, but a compromise was given. Now, the Medicaid agency may make a case-by-case exception for a child to go to CHOP for a specific reason, for a specific doctor, and for a short period of time.

For Annika to be seen at CHOP now, we must go through a long, difficult, frustrating, and time-consuming process to get the prior authorization. The authorization is only for a month or so and only for two to three visits. This is a terrible and arduous process. This never would have worked for Annika when she was younger and had to go to CHOP frequently and see many doctors.

Under this new out-of-network system, my wife and I would have had to spend all of our time managing prior authorization—an impossible task. This is on top of the emotional, physical, and financial stress of having a child with great needs.

I am thankful for [our state] Medicaid program because it provided us access to the many supports and services that have helped Annika grow to her full potential. However, I am saddened to think of all the children [in New Jersey] using Medicaid that will not have access to [experts at] CHOP. This is a tragedy that would be easy to correct.

How You Can Help

Medicaid provides critical support to families, like Bob’s, nationwide. Please support legislation that protects and expands Medicaid to better help families with disabilities. Contact your state chapter to learn how to do this in your state.