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Taryn Bailey, a 16-year-old in Arizona, is among those featured in a new ad campaign calling on lawmakers to improve home and community-based services. (Photo: BeAHero)

Taryn Bailey, a 16-year-old in Arizona, is among those featured in a new ad campaign calling on lawmakers to improve home and community-based services. (Photo: BeAHero)

'Home Care Can't Wait': Ady Barkan, ACLU Target Sinema for Abandoning People With Disabilities

Healthcare advocates are fighting for Congress to include $400 billion for home and community-based services in the $3.5 trillion reconciliation package.

Kenny Stancil

To pressure Congress to include $400 billion for home and community-based services in the $3.5 trillion social spending package now being drafted, Medicare for All advocate Ady Barkan and the ACLU are launching a new television and digital ad campaign in Arizona, home state of conservative Democratic Sen. Kyrsten Sinema.

"Across the United States, almost a million people are on waiting lists for home care and in danger of being ripped away from their families."
—Ady Barkan, Be A Hero

The ads highlight the importance of home and community-based services (HCBS), provided by underpaid caregivers, for people with disabilities and elderly Americans in need of support. While President Joe Biden has called for a $400 billion investment in HCBS, Sinema has expressed discontent about the price tag of the reconciliation bill, which is filibuster-proof but requires the support of every member of the Senate Democratic Caucus to pass. That's why the ads close by urging Arizonans to call Sinema and tell her, "Home care can't wait."

The Arizona ads, which mark the beginning of a multi-state effort to push reluctant lawmakers to expand access to HCBS and improve conditions for domestic healthcare workers, are set to air starting on Sunday.

As ACLU explained, "The first ad shares the story of Taryn Bailey, a 16-year old who is only able to live at home and be out and about in the community thanks to her lifelong occupational therapist Nina Castillo. The piece, narrated by Taryn's mother, will run on TV and appear on digital."

The second ad is a digital spot that will appear in English and Spanish. ACLU said that it "features Marcos Castillo, a quadriplegic who needs home care to assist him at home. When another caregiver is unavailable, Marcos must rely on his girlfriend to pick up the slack, which he notes is 'not fair to anyone's mental health or relationship.' Marcos adds that the problem is 'we have a wage disparity. We do not pay caregivers enough for the work they do.'"

Ady Barkan, the co-founder of Be A Hero whose ALS diagnosis has left him paralyzed and reliant on home care, is leading the fight for increased funding for HCBS.

"Although the need for home care is enormous, acquiring services is sadly out of reach for too many," Barkan said Friday in a statement. "Currently, 158,000 Arizonans depend on home and community-based services (HCBS). Approximately 67,000 home care workers reside in the state."

"Congress now has the chance to transform our safety net by investing in long-term care."
—Vikrum Aiyer, ACLU

Barkan said that "across the United States, almost a million people are on waiting lists for home care and in danger of being ripped away from their families and forced to live in institutions."

"Sadly, we know that during the pandemic, at least 134,000 nursing home residents died of Covid-19," he added. "We hope we can count on Sen. Sinema to be a hero and fully fund the initial $400 billion needed to make critical investments into HCBS. The lives of hundreds of thousands of disabled Americans, like Taryn's and Marcos', are on the line."

Recent polling found that 76% of U.S. voters, including 64% of Republicans, support Biden's proposal to spend $400 billion to improve HCBS. That's consistent with past surveys showing that a large majority of Americans want the federal government to invest in strengthening home care, which they prefer over nursing homes.

Vikrum Aiyer, deputy director at the ACLU's National Political Advocacy Department, said Friday that "for far too long, aging Americans and those with disabilities have been warehoused, abused, and deprived of the opportunity to live their fullest possible lives, but Congress now has the chance to transform our safety net by investing in long-term care."

Aiyer said that "expanding home and community-based services would transform the lives of millions of seniors and people with disabilities who rely on long-term support; expand labor protections for home care workers; and empower our most vulnerable to live freely and independently."

"Our investment in this campaign is vital to ensuring that the Senate recognizes a once-in-a-generation opportunity to urgently pass a budget reconciliation bill that invests in our communities and supports the people who need long-term care," Aiyer added. "We cannot wait any longer."


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