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Guest opinion

Advocates: Congress should fund home care for disabled & aging Arizonans

The time is now for much-needed investment in our state’s system of care for vulnerable individuals.

As Arizona and the country continue to recover from the COVID-19 pandemic, the bold investment in Medicaid Home and Community-Based Services (HCBS) outlined in the Build Back Better Plan and the Better Care Better Jobs Act is absolutely critical to Arizona – and our nation – to support people with disabilities, aging adults, and both paid and unpaid caregivers. Along with a statewide coalition of organizations and individuals representing vulnerable residents, we urge our members of Congress to support this $400 billion in funding to strengthen and expand the Medicaid HCBS infrastructure and workforce, and allow for critically needed investments in Arizona.

During the pandemic, our HCBS system has been under unprecedented strain as even more aging adults and people with disabilities need support at home to avoid nursing facilities and other institutions, where the risk of death has been exceedingly high. At least 2,500 Arizona nursing home and long-term care residents are reported to have died from COVID-19 – a number that is certainly larger in reality. At the same time, providers have shut down HCBS programs, workers have been laid off, people with disabilities and aging adults haven’t had the supports they need, and their families have been left to fill the gaps, at the expense of their own jobs and responsibilities.

Despite Arizona’s reputation for being among the most effective and efficient Medicaid systems in the nation, due to a long history of underfunding and lack of adequate investment in the HCBS infrastructure at both the federal and state levels, our state’s HCBS system is not able to meet current demand or appropriately prepare for the future. The vast majority of people with disabilities and aging adults wish to live in their own homes and communities. And receiving long- term services and supports at home or in the community is not simply a matter of personal preference; it also improves individuals’ quality of life and it is more cost-effective for the state than institutions.

Arizona is considered a leader among the states in providing HCBS services to residents with intellectual and developmental disabilities (IDD). We are rightly proud of how much the state is able to provide, in spite the many challenges we face. Yet the IDD service system alone is underfunded by at least $100 million annually and perhaps as much as $200 million or more, by the state’s own estimates. Overall, according to AARP, Arizona ranks 26th in its provision of long- term services and supports to all populations – better than many states but a mediocre showing at best.

This situation strains the ability of caregivers – professionals and family members – to meet the needs of those who require care. The disproportionate burden caused by the gaps in our HCBS system falls on women and people of color with limited income, yet who have the responsibility of providing care – both unpaid and underpaid.

Moreover, the lack of support for the paid workforce means the responsibility of care and support often falls on unpaid family caregivers. The earnings losses related to unpaid family caregiving are significant and well-documented. Investment in HCBS will help address inequities and strengthen our economy by providing resources to support good jobs for direct care workers and allowing family caregivers to rejoin the workforce.

While a one-time boost from the American Rescue Plan Act, passed this year, will help states cope with the immediate harm and aftermath of COVID-19, longer-term investment is vital. Funding prior to the pandemic was inadequate and has been for decades. To transform our HCBS system to meet the long-term needs of our residents, Arizona needs a long-term investment like the Better Care Better Jobs Act. This investment will increase HCBS enrollment in our state by more than 37,000 people and create 6,016 new direct care jobs. It will also allow almost 12,500 family caregivers to start a new job or rejoin the paid workforce.

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The Better Care Better Jobs Act is a critical opportunity to build the HCBS system to support all people who need home and community-based supports and services. On behalf of the statewide community of individuals with disabilities, aging seniors, and other vulnerable Arizonans, we urge our federal lawmakers to support the Better Care Better Jobs Act’s $400 billion investment in the Medicaid HCBS infrastructure and the workforce that provides these essential services.

Jon Meyers is the executive director of The Arc of Arizona. J.J. Rico is the CEO of the Arizona Center for Disability Law.

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