Arizona seeks 1115 waiver amendment to allow permanent extension of parents as paid caregivers


Hannah Saunders


The Arizona Health Care Cost Containment System (AHCCCS) is in the process of requesting an amendment to the state’s active 1115 demonstration that would provide permanent payments to parents who act as paid caregivers for their minor children. In the demonstration, AHCCCS also seeks to create homecare training and family support services as part of its benefit package. 

A temporary COVID flexibility allowed for payments to parents who served as paid caregivers for minor children during the earlier days of the pandemic, which has since expired. Under the proposed amendment, AHCCCS hopes to combat the direct care worker (DCW) shortages and establish an additional support service to restore, enhance, and maintain family functioning to preserve care for the individual while in the home or community. 


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“We plan to present the final request in a public forum, yet to be scheduled but likely in early September. Once we submit the waiver request, CMS will post it for a federal public comment period,” an AHCCCS spokesperson told State of Reform. 

AHCCCS is currently reviewing all public comments to incorporate them into the final waiver request to CMS. Under the demonstration, those eligible include minors who are also Arizona Long-Term Care (ALTCS) members that require home and community-based services. This would allow legally responsible parents to receive payments for extraordinary direct care services, such as attendant care, personal care, and homemaker services. 

Parents would also be limited to 40 hours of paid care per child per week, and may not go over 16 hours in one day. Legally responsible parents must also meet all DCW requirements, including being directly employed or contracted by an AHCCCS Registered Direct Care Service Agency, showing compliance with Electronic Visit Verification under the 21st Century Cures Act, and passing certain DCW competency tests. 

Parents providing these long-term care services to their minor children must also undergo a quarterly in-person case management visit, and agency supervisory visits. AHCCCS’s proposal to establish a home-care training family support service for the long-term care population would assist families with learning skills related to the adjustment of their family member’s disability, aging process, or significant life events and transitions. 

The family support service program would improve the health and wellbeing of the member receiving care and their family, support navigation through the healthcare system, and enhance self-advocacy. 

Raising Special Kids, a social services organization that seeks to improve the lives of children living with disabilities, provided public comment in support of AHCCCS’s proposal. Through this amendment, the organization hopes to see a lift on familial pressures through compensation, and safeguards that prevent institutionalization. Raising Special Kids also hopes to see managed care organizations continue to be monitored, and for provider agencies to increase the professional workforce capacity to provide home and community-based services. 

At the same time, Raising Special Kids holds concerns about potential unintended consequences of the amendment, such as provisions that would let families become providers of habilitative services, which would alter their roles to be both the primary paid service provider and caregiver. 

“The effects of this could increase caregiver burnout, and lead to greater social isolation of both the child and family. Achieving optimal outcomes for children requires parents and professionals to consult and collaborate on the provision of care and support needed within home and community-based settings,” Executive Director Christopher Tiffany said. 

An additional concern relates to the ongoing healthcare workforce shortages. Raising Special Kids said they believe that a shift towards a system that incentivizes families to provide habilitative services may lead to “complacency” among the state’s provider network when it comes to developing and maintaining proper capacity. 

“The unintended consequences may lead to provider agencies heavily recruiting parents and family members, leading to an even greater shortage of trained and qualified direct care workers.”

— Tiffany 

Raising Special Kids also stated that the need for peer-based parental support will increase due to the unwinding of the federal public health emergency, and acknowledged how AHCCCS addressed this in the waiver request. The organization continued by mentioning that parents supporting family members will increasingly become a necessary and important connection for families in terms of information sources, training, and support. 

Tiffany wrote that the organization has questions regarding how this will be implemented and defined for families of individuals receiving these home and community-based services. Raising Special Kids encourages AHCCCS to work with community-based organizations and stakeholders to make sure peer support services are high-quality and are offered in ways that meet diverse needs.