The following links are for the sources used to create content for this website.
These are tough times with a lot of uncertainty. Many are barely holding on by a thread even on much better days than we have had lately. If you care for someone with disabilities or have disabilities yourself and are feeling overwhelmed here are resources. Please know, you are not alone. There are many amazing people working tirelessly for this community. And they are making progress. Hang in there. There is a lot to look forward to, even if it's not there just yet.
Support Groups & Events:
https://care4thecaregivers.org/events/
Crisis Resources:
• 988 Suicide & Crisis Lifeline: Dial 988
• Teen Lifeline: 602-248-8336 or text 602-248-TEEN
• National Parent Helpline: 1-855-427-2736
• Crisis Text Line: Text HOME to 741741
• Warm Line for Peer Support (AZ): 602-347-1100
Arizona Achieve is a statewide coalition that supports self-advocacy for individuals with disabilities. From peer-mentorship to leadership training, Arizona Achieve guides its members to find their voices, tell their stories, and advocate for change.
CLICK HERE to see their Disability Bill Tracker (scroll down to see all bills being tracked)
Raising Voices Coalition has been a leader in disability advocacy in Arizona and is building a framework to be a nationally recognized advocacy coalition for disabled individuals, caregivers, and related industries. In advocating for common sense DDD funding and services in Arizona they have created this Call to Action document which has become the staple for advocates and families to utilize in forming a focused message to decision making legislators. This website has relied heavily on this document as a basis for achieving the goal of creating awareness and giving people clear actions to take to make their needs heard.
En diciembre de 2024, la JLBC se reunió y dio una revisión desfavorable del gasto presupuestario de la DDD y AHCCCS. Discutieron extensamente cómo se asignaron los fondos y examinaron el programa Padres como cuidadores remunerados (PPCG). El 29 de enero de 2025, el Comité de Asignaciones de la Cámara se reunió para continuar discutiendo los déficits presupuestarios y las recomendaciones presupuestarias del Gobernador para DDD y DES. Durante esa reunión, el Representante Livingston sugirió que no se otorgarían asignaciones adicionales a DDD hasta que se aprobara el presupuesto final. También afirmó explícitamente que quería que los presupuestos de DDD y DES se redujeran en un 25% para equilibrar el presupuesto. Cuando se le preguntó si estaba sugiriendo recortar los servicios para personas discapacitadas para equilibrar el presupuesto, confirmó: "¡Sí!" Haga clic aquí para ver las llamadas a la acción que debe completar.
On April 18, 2025 The DDD community through Raising Voices Coalition proposed Bill Amendments and common sense compromises to end the funding crisis and protect the budget as well well being of the DDD community moving forward. See the full proposal here.
Click here to see this report. It presents a comprehensive analysis of the financial and human impact of Home and Community-Based Services (HCBS) in Arizona, particularly in relation to medical and behavioral health costs.
It combines per-member per-month (PMPM) spending data with qualitative findings from the 2023 and 2025 caregiver surveys.
The result is a compelling case for continued investment in HCBS and the Parents as Paid Caregivers Program (PPCG) as essential components of Arizona’s long-term care infrastructure.
Brandi Coon has worked tirelessly and selflessly on behalf of the disability community. She has poured a tremendous amount of time and energy into advocacy as well as educating both legislators and parents alike. She has rallied an army of families who are dedicated to protecting the critical services of our most vulnerable. Brandi and the families who fight along with her are true heroes.
To stay informed about the latest developments with DDD funding, please visit Brandi's link tree and follow her on social media.
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—issued a statement conveying being deeply concerned by the ongoing threats to essential services provided through the Arizona Department of Economic Security-Division of Developmental Disabilities (DDD).
The Morris Institute for Justice (MIJ), Disability Rights Arizona (DRAZ), and the Arizona Center for Disability Law (ACLPI) write to express support for approval of the Fiscal Year (FY) 2025 supplemental funding to continue funding for the Arizona Department of Economic Security/Division of Developmental Disabilities. Click Here for the full letter.
Weigh in on bills from the comfort of your couch! Arizona’s Request to Speak (RTS) is an online tool that lets everyday citizens give Arizona state lawmakers our feedback on bills. It’s an easy way to get involved in state politics, stay informed on the bills that directly affect us, and make sure our elected officials honor the wishes of us, their constituents.
Click here to go to Personal Story and OpEd folders from the Call to Action document. They contain Professional OpEd papers as well as personal stories about families and caregivers who rely on services funded by Medicaid and DDD.
CLICK HERE to 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.
These surveys and resulting data consider the impacts of the Paid Parent Care Giver program on Arizona families of minor children with disabilities.
Documentary filmmaker and parent in Arizona documented families of autistic children who use DDD services and will regress without them. Filmed on February 19th, 2025 and at a political rally at the Phoenix Capitol on February 26th, 2025.
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.
Arizona families are demanding proper representation in their legislators.
The recalls involve:
Steve Montenegro - Speaker of the House (Legislative District 29)
Michael Carbone - Majority Leader (Legislative District 25)
Matt Gress - Appropriations Committee Member (Legislative District 4)
David Livingston - House Appropriations Chair (District 28)
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.
HB2816, which would authorize DDD gap funding for May and June without conditions immediately, has not been heard in committee or on the House floor. This bill would allow the program to continue through the end of FY2025 stabilizing the hundreds of small businesses and hundreds of thousands of jobs in Arizona that revolve around the DDD program, with any proposed changes or long-term reforms to be debated during the 2026 budget process—not under emergency conditions.
HB2945 with the Livingston Amendment and SB1734 with the Kavanagh Amendment passed through committee in a “companion bill” strategy designed to expedite a bill’s move into law. These identical bills add layers of bureaucracy making services for our most vulnerable more difficult to access. Once enacted into law, legislators will have been handed sweeping power over critical decisions that should be guided by urgency and needs of the community—not politics. The Livingston and Kavanaugh amendments are basically identical with only a difference in where exactly funding comes from. These amendments temporarily protect Parents as Paid Caregivers at 40 hours/week, but force a cut to 20 hours/week starting July 2026 — and lock all future Medicaid decisions into politics.
The Willoughby Amendment was a bipartisan backed solution to the funding issue. However Appropriations Chair David Livingston added three additional members to the committee minutes before the session killing the bipartisan Willoughby Amendment and passing the Livingston Amendment.
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, anddelivered 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. This is a timeline detailing the
development and implementation of the PPCG program.
The Division of Developmental Disabilities (DDD or Division) sent out this update to vendors in light of ongoing negotiations at the State Legislature regarding supplemental funding needed for DDD in this current fiscal year. Stating: It is accurate that if the legislature does not pass FY25 supplemental funding that DDD would not be able to pay out those claims for dates of service in May/June.
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