Arizona Must Stop Dividing Families and Start Protecting Disability Supports

On October 1st, new Arizona Health Care Cost Containment System (AHCCCS) policies will go into effect that fundamentally alter how extraordinary care support are provided in Arizona. Instead of tailoring services based on medical need, AHCCCS is now splitting coverage by age. This approach may look like “guardrail” on paper, but for families it translates into confusion, instability, and in many cases, harm. 

Parents are left wondering: what happens when my child’s needs don’t line up with their age group? How will children under twelve with high medical and or high support needs be safe after these changes go into effect? The stress on families is already mounting, and the fear of what will happen after October 1st if leaders and lawmakers do nothing. 

At the same time, some elected officials have chosen to deflect the attention away from these pressing concerns by fueling an old narrative: pitting Long-Term Care/DDD against the Empowerment Scholarship Account (ESA) program. But families know the truth- these programs are not enemies. They serve different purposes, draw from different funding streams, and both are essential for children with disabilities. 

ESA provides families with flexibility to choose education that matches their child’s learning style and needs. Long-Term Care/DDD delivers the critical health and daily living supports that keep children safe at home. The same child may need both, and when lawmakers pit one program against they ignore the reality that families depend on comprehensive support systems-not political talking points. 

ESA needs more staff in the main office, answering phone calls, taking questions, and more frequent reviews of accounts so they can catch the bad actors. Most of the stories in the news of ESA being misused were not by parents but rather people pretending to be a parent with a “fake” child enrolled in the program. This gives ESA a bad name when it is reality it is a needed program for children with different learning needs. More effective oversight keeps the ESA program safe from bad apples. 

Arizona Long Term Care needs assessment tools that were developed with the true needs of adults and children in mind, not hard limits on support needs by age. Balancing DDD budget on the backs of disabled children misses the mark. AHCCCS and DDD can develop new assessment tools that create guardrails without harming children, accountability without compromising safety and wellbeing of adults and children with disabilities. 

Guardrail in policy are necessary. Oversight is necessary. But these guardrails cannot come at the expense of person-center care. Children with disabilities do not fit neatly into age brackets. Their needs are complex, individual, and lifelong. Policy must reflect that reality. 

Arizona families and advocates are not asking for a fight between programs. We are asking for thoughtful leadership that strengthens both systems. We need ESA and Long-Term Care/DDD to be stable, accountable, and responsive. Most importantly, we need policies that see our children as whole people, not as budget lines divided by age.

As the October 1 evaluation changes roll out, the question isn’t which program should win. The question is whether Arizona’s leaders will finally stop dividing families and start fixing the real problems. Our children deserve nothing less.

-Brandi Coon and Courtney Burnett