Arizona opinion: How the Biden administration has delivered for caregivers like me

There is no stronger advocate for a child than their parent. Any parent of a child with a disability knows it, and I’ve experienced it firsthand as I’ve advocated for my eldest son in the Arizona healthcare system. My son contracted bacterial meningitis at six months old, which left him with a traumatic brain injury and has led to Intractable epilepsy, cerebral palsy, communication struggles and other life long disabilities. Between moves and other changes within our family, Medicaid has been there when our son and family needed it most.

Medicaid expansion under the current presidential administration has brought our family, and countless others, immense hope for not only our child’s wellbeing but for the future of our healthcare system. Because of federal support and authorization from Centers for Medicare and Medicaid Services, Parents as Paid Caregivers, a policy initiative that I’ve helped lead the Arizona-wide advocacy for, has been expanded.

In April 2020, at the beginning of COVID-19, parents of children with disabilities had the opportunity to become employees of agencies through our state Department of Developmental Disabilities, a subsidiary of our state Medicaid program. I was one of the first parents to be trained and employed as a provider for my child. Immediately, I thought, this program is a game-changer. It’s really helping my son and my family!

From day one, the initiative was not just filling my employment gap but serving an essential service need. In Arizona and across the country, caregivers have high turnover rates, and the quality of care is not reliable, putting our most vulnerable kids at risk. Parents as Paid Caregivers allows parents to be compensated for the extraordinary care needs of their children with disabilities. This program allows families to make decisions about their lifestyles and their children’s care needs.

Upon experiencing the benefits of the program, I knew I had to mobilize and advocate to make this permanent. I collaborated with other caregivers through Facebook, created a coalition and we utilized our 3,000+ voices to band together to make this temporary program permanent. Through conversations and collaboration with our state Medicaid and elected officials we received a 2-year extension through the Biden administration’s ARPA program, which was a huge win coming out of the pandemic. In the summer of 2023 our state Medicaid leaders expanded our state Waiver to allow parents to serve as paid caregivers as a permanent option.

In February 2024, the new waiver authority was granted federal CMS approval. Governor Hobbs and the federal administration have been supportive of our efforts and this whole process has been a beautiful collaboration between parent advocates, the Arizona Medicaid department, and the federal government. For the first time in a long time, it feels as though government officials are aware of the needs of my family and the greater caregiver community.

This collaboration is what happens when the government works for the people. What we’re witnessing in Arizona is just the beginning of the next wave of disability progress and parent advocacy. To pass “Parents as Paid Caregivers,” we mobilized a network of 3,000 parents to advocate and those parents are ready for the next policy battle.

Our win at the state level, with federal buy-in, is an eye-opener for legislators to now realize that parents are a powerful political bloc that can be mobilized to enact change in their communities. As a parent of a child with a disability, I’m used to hearing “no” from those in office. Even more than that, I’m used to turning that “no” into change for our community.

What happened in Arizona is a beautiful example of what is increasingly happening across the country — because of grants from this federal legislation, towns and cities in Arizona are building community-led change through forgiving medical debt and investing in child care. And Governor Hobbs and the Biden administration’s support of our advocacy demonstrates to elected officials how to best support children with disabilities and their parent advocates. My hope is that other caregivers can view our advocacy as a template to leverage support from their state and local elected leaders as well as this administration to continue improving their kids’ quality of life. Our children deserve equitable and accessible care to complete their daily living requirements and this administration is fighting for them.