Dear Editor,
Today, Arizona places a dangerous bet on bureaucracy over children. On the very day a new assessment system takes effect, families like mine are being told our children’s most basic needs will be judged not by their diagnoses or (deviation from standard development)lived realities, but by their age on a calendar.
Under the new rules, the Division of Developmental Disabilities (DDD) is capping services like Habilitation (teaching life skills such as communication and safety) and Attendant Care (critical hands-on help with daily tasks and supervision) by age group, not by individual need. Every child in this program has unique disabilities so severe they qualify for institutional-level care. Yet their support is not decided upon) by a one-size-fits-all determined by how old they are) .
For example: a five-year-old in the program can now get no more than just five hours a week to work on essential skills like managing self-injurious behaviors or communication development, no matter that child’s actual needs or how severe their disability may be.
A nine-year-old who needs eyes on them every moment just to stay safe gets no Attendant Care Supervision because that service isn’t even considered or assessed until age 10.
These new limits are blunt, rigid, and detached from reality. They don’t reflect the complexity of disability, and they don’t reflect the lived experience of families like mine.
I don’t presume to speak for every parent or member of the disability community, but my 13-year-old son, Caleb, is non-speaking so my voice had to grow louder as his needs demanded it. I don’t take this new role as advocate lightly, and I cannot forget how these services impacted my son’s life at the crucial young ages these new policies most drastically limit.
At just four years old, my son’s severe aggression meant he couldn’t safely be around his twin sister, his absolute best friend. Through Habilitation, skilled providers worked toward rebuilding their bond and teaching him safe play skills. That wasn’t just progress on paper- it gave my daughter her brother back.
At nine, Attendant Care quite literally helped save Caleb’s life when a trained provider recognized and quickly responded to a seizure while I was in the kitchen cooking. Without her, the outcome could have been far worse. That is what Attendant Care provides- eyes, hands, and trained attention no parent can replicate every single hour of every single day.
Without trained aides at my side during those critical years, my son might not still be in our home today. He might have spent far more time in hospitals or even an institution, at great cost to both my family and the state. These policy changes ignore not only human impact, but also fiscal reality. When children lose support in their homes, the state pays far more for crisis care, emergency hospitalizations, or long-term placement.
That is what makes this reversal so outrageous. Just months ago, when Arizona faced a DDD budget crisis, families and loved ones had to fight to protect the disability community. Some Republicans in the legislature pushed hard for a 25% cut to the program and strict guardrails that would have gutted services.
Democrats fought fiercely, families applied immense pressure, and eventually, a bipartisan compromise was reached. It wasn’t perfect, but it kept kids safe, the program funded, and services intact.
Now, just months later, it is the Democratic governor’s own administration- through executive agencies- that has signed off on policies that are even more devastating. Services that keep children safe, stable, and at home are being capped by age, not by need. The same leaders who celebrated defending children with disabilities in the spring are now permitting their agencies to abandon the most vulnerable.
Budgets matter. Sustainability matters. Families know this- we balance and juggle priorities every day. But abandoning children who need significant assistance just to stay safe and build the skills to survive is neither sustainable nor responsible. It is shortsighted, cruel, and fiscally reckless.
We are not asking for the impossible. We are asking for compromise:
- Delay the execution of changes so families can establish safe alternatives.
- Delay changes to Habilitation until that policy is tested and reviewed- especially since age caps were
never included in the public draft for comment or review. - Create an enhanced assessment or exception option for children with needs that these assessments
do not meet, so they can receive the services their lives depend on.
Legislators were compelled to the table in the spring, and they eventually listened. Now we need Governor Hobbs and her agencies to do the same. Arizona cannot balance its budget on the backs of its most vulnerable children. We are willing to come to the table again. The question is, are our leaders willing to join us?
Amy Haley
Raising Voices Coalition
