Link to folders that contain personal stories about families and caregivers who rely on services funded by Medicaid and DDD.
There have been many questions and assumptions about the Parents as
Paid Caregivers (PPCG) program, which was added to the 1115 waiver in
2024 after CMS approval. Some have wrongfully blamed this program for
the rising ALTCS and DDD costs. The reality is that services are now more
accurate being evaluated based on members' extraordinary care, and
delivered by a larger Direct Care Workforce. Before 2020, Attendant Care
and Habilitation services were under evaluated and under provided due
to a nationwide caregiver crisis. Below is a timeline detailing the
development and implementation of the PPCG program.
Learn more about the differences between Arizona's State Plan and 1115 Waiver and how they are central to Arizona's ability to administer Medicaid services.
The State Plan is a comprehensive written contract between the Arizona Health Care Cost Containment System (AHCCCS) and the Centers for Medicare and Medicaid Services (CMS) that describes the nature and scope of its Medicaid program.
This report highlights the benefits of supporting Arizona families raising children and adults with intellectual and developmental disabilities (I/DD). The pandemic had a profound impact on these families, particularly those with medically complex children. Arizona has led in Medicaid innovation, integrating behavioral and physical health and implementing waiver authorities that allow legally authorized individuals to be paid caregivers. Through ALTCS-DD, Arizona helps families keep their loved ones at home, fostering inclusion and stability in line with the state’s longstanding commitment to community-based care.
In February 2025 Care 4 the Caregivers conducted a survey of 1,071 individuals providing care for loved ones with disabilities enrolled in ALTCS and DDD. The majority of respondents live in the Phoenix Metro area (77%), with smaller numbers in rural communities (15%) and the Tucson Metro area (8%). Most caregivers have deep ties to Arizona, with 68% having lived in the state their whole life. In terms of education, 60% have pursued education beyond high school.
I'm a documentary filmmaker in Arizona, filming families of autistic children who use DDD services and will regress without them. My son is 13 and has been in DDD for 10 years now. DDD paid for his AAC Device, his communication device. Without it he would not be able to communicate with us so well, it's his voice.
I decided, more people needed to hear what is going on in Arizona and we nee to get these stories out. I filmed on February 19th, 2025 and February 26th, 2025.
On February 26th, there was a rally to tell both, Republicans and Democrats that they need to get together and figure out the budget. We don't want our kids to be political pawns.
Ability360, Arizona Achieve, Arizona Developmental Disabilities Planning Council, Arizona Statewide Independent Living Council, Care 4 the Caregivers, Disability Rights Arizona, Raising Special Kids, The Arc of Arizona, and The Arc of Tempe—is deeply concerned by the
ongoing threats to essential services provided through the Arizona Department of
Economic Security-Division of Developmental Disabilities (DDD).
Daily Cost of Care per Person by Residential
Setting FY 2019
The State of the States in Intellectual and Developmental Disabilities Project is a national longitudinal comparative study of financial and programmatic trends in spending on supports and services for people with IDD in the United States. The project is funded by the U.S. Administration on Community Living as a longitudinal data project of national significance.
We, the families, caregivers, and advocates of Arizona’s disability community, make this urgent plea. Our children and adults with disabilities, some of the most vulnerable members of our society, need your support for DDD's gap funding. Struggling families depend on these critical services to care for their loved ones.
Join us in making a difference. Stand with Arizona's disability community. Your signature has the power to change and improve lives. Please sign our petition and help us secure gap funding for DDD. This is not just a policy issue, it is a matter of human dignity and justice.
Raising Voices Coalition Co-Founder and Disability Advocate and Caregiver, Brandi Coon is on the forefront of the fight to protect critical HCBS services for families in Arizona.
Advocacy in Action ✊♿| Fighting for disability rights & policy change | elevating voices, changing laws | Join the movement ⏬
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