By Catherine Citta, JPKF Public Policy Fellow
Jon Meyers, Executive Director for the Arizona Developmental Disabilities Planning Council, participated in an interview with Catherine Citta, 2023 Public Policy Fellow with the Joseph P. Kennedy Jr. Foundation, to discuss Arizona’s successful policy change for child and adolescent family caregivers. Arizona received a temporary extension in early November to keep the program in place through March 2024. In February 2024, the Centers for Medicare & Medicaid Services (CMS) approved Arizona’s amendment to its 1115(a) Medicaid demonstration, the Arizona Health Care Cost Containment System. *This interview took place prior to the final waiver approval.
What legislation or policy was successfully advocated for in your state?
During the pandemic, Arizona was able to obtain waiver flexibility from the Centers for Medicare and Medicaid Services (CMS) to allow payment to parents of minor children for caregiving. Formerly, the state only allowed family caregivers to receive caregiver payments in relation to adults receiving care. The minor children family caregiver payments were initially allowed using state Medicaid funding and then with American Rescue Plan Act (ARPA) funds. Then the state announced it would be ending the program once ARPA funds ran out. When it was clear that the state was not going to make minor children family caregiver payments permanent, community and popular support were able to convince the state’s Medicaid agency to make the request to CMS.
How did the groups and organizations support this policy change?
The Raising Voices Coalition, a group of primarily mothers who are passionate about advocating for family caregivers and children with disabilities, banded together to advocate. Parents connected to organizations and their networks and provider networks to become a statewide effort. The Raising Voices Coalition created a survey on what parents’ and caregivers’ feelings would be regarding the payments to minor children’s family caregivers. The Arizona DD Council supported the effort by distributing a large amount of information, ensuring that the survey was easily understood and was in line with the coalition’s objectives. The Arizona DD Council also performed interviews with media on the importance of the waiver and how the waiver would help fill the gap caused by the direct support professionals (DSP) shortage. The Arizona Division of Developmental Disabilities, the state DD agency, joined the effort when it was clear that the state’s Medicaid agency was in support of applying for the waiver to CMS.
Who assisted in getting the policy passed? Were there other DD organizations involved?
Arizona’s Protection and Advocacy organization, the two University Centers of Excellence on Developmental Disabilities (UCEDDs), and the Arizona DD Council were involved in getting the word out and supporting the efforts of groups. A large number of provider agencies and associations were on board and continue to be influential within the field and with legislators. The Arc of Arizona, a leader in the state regarding advocacy and policy, supported the effort.
Were there any self-advocates involved?
There were not many self-advocates involved due to the focus being on minor children. However, parents who pushed for the program extension brought their children to events and meetings, which brought the words on paper to life. This was an effort on the part of parents, providers, and advocacy organizations.
What advice would you give other states’ DD Councils facing similar policy efforts?
There is a lot of sensitivity about making children public figures. The DD Council would love to have involved more individuals with intellectual and developmental disabilities (IDD), however there is a lot of concern and sensitivity with making children, especially those with fairly severe disabilities, public figures. One suggestion to have individuals with IDD to be self-advocates regarding policy changes for minor children would be involve young adults to advocate. While it is difficult for minor children to advocate for policy changes, young adults can share their own experiences and stories during their younger years. If DD Councils can find self-advocates to speak on this, there could be a large number of stories and experiences shared.
Another piece of advice is to build the strongest case possible and have data to support the requests. Every state can provide evidence in some way; there is no shortage of empirical data on the DSP shortage. The survey conducted by the Raising Voices Coalition generated enough anecdotal input that the results were very persuasive. Having words from parents directly on the value added to the empirical data. Combining research-based data with anecdotal input creates a hard to ignore case.
If the state can find a way to financially or programmatically continue payments to family caregivers, the DD Council should advocate for the change by finding allies in the state’s DD service agency, legislators, other agencies, and providers to build a team of advocates so that key agencies and legislators are in support. DD Councils should utilize their networks and reach out to as many individuals, organizations, and agencies as possible. Additionally, it is vital that DD Councils intentionally collaborate with their community from the beginning. Grassroots advocacy was what made this policy change happen for Arizona.
One final recommendation is to not underestimate the value of the media. TV features and new articles can go a long way to garner support from legislators and agencies. Social media is another area that people connect on. Use plain language as much as possible and ensure that communication is clear and to the point. Collaborate with caregivers so that they are able to share to their own media networks. It is hard to ignore media blasts and posts to agencies and legislators.
Information on February 2024 CMS waiver approval:
The Centers for Medicare & Medicaid Services (CMS) approved Arizona’s amendment to its 1115(a) Medicaid demonstration, the Arizona Health Care Cost Containment System. This amendment contains two policies, “Parents as Paid Caregivers” (PPCG) and “KidsCare Expansion.”
“Approval of the Parents as Paid Caregivers amendment will allow Arizona to continue to utilize flexibility previously provided during the COVID-19 Public Health Emergency to reimburse legally responsible parents for providing direct care to their minor children, helping to mitigate the direct care worker shortage and improve access to timely, effective care in the home and community. The amendment also establishes a Family Support service as part of the home and community-based services (HCBS) benefit package. The Family Support service aims to support parent caregivers and improve access to timely, effective care in the home and community.
Approval of the KidsCare Expansion amendment will allow the state to increase the Children’s Health Insurance Program (CHIP) eligibility thresholds from 200 percent of the federal poverty level (FPL) to 225 percent FPL. Arizona will also have the flexibility to increase KidsCare coverage up to and including 300 percent of the FPL, subject to approval by the state legislature, without the submission of a formal amendment as long as the state complies with public notice and tribal consultation statutory requirements and provides CMS at least 60 days’ notice prior to implementation,” shares CMS.
The approval is effective February 16, 2024, and will remain in effect through the demonstration approval period, which is set to expire September 30, 2027.
To view the approval letter and Special Terms and Conditions, visit: https://www.medicaid.gov/sites/default/files/2024-02/az-hccc-dmns-pdftn-aprvl-chip-expn-prnts-paid-crgvrs-amndmnt.pdf
See the below media attention on Arizona’s efforts:
12 News Video Clip in English: https://www.12news.com/article/news/local/arizona/parents-as-paid-caregiver-program-hoping-permanent-arizona-update/75-57ffb881-ce1c-4dd7-9d91-efb59eec76ec
12 News Video Clip en español: https://www.12news.com/article/syndication/spanish/intentan-sea-permanente-el-programa-para-padres-que-cuidan-de-ninios-con-discapacidades-arizona/75-8f72f988-916e-4d1b-af03-e6c06c1aa85b
