Republican House Majority Whip Julie Willoughby and State Senator Janae Shamp are urging Arizona’s Department of Economic Security (DES) and the Arizona Health Care Cost Containment System (AHCCCS) to resume negotiations with disability advocates over new assessment policies set to take effect October 1.
The lawmakers and advocates warn that the changes could significantly reduce services for families and individuals with developmental disabilities.
In a joint statement, Willoughby and Shamp said they recently met with parents, self-advocates, and direct-care workers, who expressed frustration that they were excluded from meaningful input during the policy‑drafting process. “Families are desperate to be heard,” Willoughby said, adding that decisions about health care should be grounded in evidence and include the voices of those most affected.
Shamp emphasized that “lives are at stake,” urging DES and AHCCCS to halt implementation until a more inclusive, data-driven process is developed.
What has the lawmakers’ attention is that starting October 1st, DES and AHCCCS will implement a revised Home and Community Based Services (HCBS) Needs Tool to drive eligibility and service decisions for hourly attendant care and habilitation services for disabled minors, and the revised tool will evaluate children against fixed age-based benchmarks, rather than relying solely on individualized assessments. “Given the challenges some of these kids are dealing with, you can’t treat a 13-year old like a normal functioning 13-year old, some of the development delays are substantial and can leave a child years behind their chronological age.” explained one concerned parent. Another of the many changes may leave children under a certain age effectively ineligible for certain care hours, based largely or entirely on their age instead of their individual circumstances. So in one example, kids under 10 years old could be simply ineligible just because they are under 10.
Advocates warn the new rules could lead to significant reductions in approved hours of service, and that shifting decisions from individualized assessments to blanket cutoffs based on age will leave kids without care, including those with rare or complex disabilities.
Willoughby and Shamp are formally requesting DES and AHCCCS to pause the implementation of the new rules and reengage with families and service providers. They argue that preventing harm now is preferable to retroactive legislative fixes after damage has been done.
Supporters of the reforms say they are necessary to ensure sustainable funding for the disability services system and to bring consistency and accountability to assessments.
Whether DES and AHCCCS will respond by reopening the policy process remains to be seen. Families and advocates may continue to seek legal, legislative, or public pressure options to preserve essential services and support.
will leave kids without care, including those with rare or complex disabilities..
is a phrase that has the Oder of getting over on the man to it does it not ? especially the hard to substantiate.. rare and complex ? so just pay us and don’t ask because we can’t tell you? not a good answer to win by is what it smells like.
will leave kids without care, including those with rare or complex disabilities..
is a phrase that has the Oder of getting over on the man to it does it not ? special be hard to substantiate.. rare and complex ? so just pay us and don’t ask because we can’t tell you? not a good answer to win by is what it smells like.