In the Senate Special Committee on Aging’s March 18, 2021 hearing entitled, “COVID-19 One Year Later: Addressing Health Care Needs for At-Risk Americans,” Senator Casey set the stage for a focus on Home and Community Based Services (HCBS). For those of us in the disability advocacy committee, this focus is welcomed and applauded. HCBS are often essential services for people with disabilities on Medicaid to live well in their homes. Yet, there are long waiting lists for services and each state administers HCBS differently. Access was already suboptimal before the pandemic and was worsened dramatically this past year.

Amy Houtrow, MD, PhD, MPH is a professor and Endowed Chair in the Department of Physical Medicine and Rehabilitation for Pediatric Rehabilitation Medicine University of Pittsburgh School of Medicine. She is also the Vice Chair for Quality and Outcomes. She directs the ACGME accredited Pediatric Rehabilitation Medicine Fellowship and is the Chief of Pediatric Rehabilitation Medicine Services at UPMC Children’s Hospital of Pittsburgh (CHP) and the Medical Director of the Rehabilitation Institute at CHP. 
She earned her MD from Michigan State University, her MPH in health policy and management from the University of Michigan and her PhD in medical sociology from the University of California, San Francisco. As a pediatric rehabilitation medicine physician, Dr. Houtrow’s main clinical focus is caring for children with disabilities to improve function and quality of life to the greatest degree possible. Complementing her clinical focus, Dr. Houtrow’s research focus is on childhood disability trends, advancing health equity and developing channels to improve service delivery. 
Twitter: @HoutrowMDPhDMPH

I was honored to testify and speak this truth after Senator Warren asked me a question about what happens when HCBS aren’t accessible: “When services can’t be accessed, people with disabilities and seniors become more limited in their activities; they are more likely to become depressed; their risks of hospitalizations go up; their families feel the physical strain of doing more hands-on care; the emotional strain of trying to juggle the household’s needs; and the financial strain of having to cut back or stop working. Anxiety and exhaustion are common, as is guilt. The weight of not getting needed services can result in the breaking point everyone wants to avoid -placement in a facility. And during the pandemic, you asked how has this changed? I have a single word to add -that word is fear.”

Knowing the challenges with accessing in-home care, Senator Casey and others fought hard to secure nearly $13 billion for HCBS in the American Rescue Plan.  In his opening remarks, Senator Casey said, “The bill strengthens our long-term care workforce, provides resources to ensure the heroes on the front-lines have personal protective equipment, testing supplies and even premium pay.” As stated by Senator Warren in the hearing, “The America Rescue Package made important investments in home and community-based care. But Congress must do more. It must do much more. We must make HCBS a mandatory benefit in Medicaid and expand Medicare to cover more at home, long-term care services. And we should force private insurers to commit some of their billions of dollars in profits to covering long-term care. Health care -including access to long-term care, provided to people in their homes and communities, should be a right not a privilege.”

And if Senator Casey prevails, Congress will do more. Senators Casey (D-PA), Hassan (D-NH) and Brown (D-OH) have collaborated with Representative Dingell (D-MI) to draft a bill known as the HCBS Access Act. This act will build on progress made serving people with disabilities in their homes by eliminating waiting lists for HCBS, promote independence by covering rehabilitation and other services, eliminating silos and streamlining access to HCBS, increasing the capacity of community services, supporting the unpaid caregiving workforce, improving the direct care workforce and eliminating disparities in accessing services. The draft bill is open for comment here:

When thinking about how HCBS can be improved, I think of the high turnover (26.5% in 2020) rates for direct service workers. We know how hard it is on people with disabilities to not receive reliable services that they direct to provide them with the assistance they need. Searching for and training direct service workers takes time and energy. Breaking the turnover cycle would clearly benefit people with disabilities.  But what would decrease turnover? Higher pay would help. According to the US Bureau of Labor Statistics, in 2019, home health and personal care aides earned a median wages of $12.15/hour. This is far from a living wage. In Pittsburgh, where I live, a living wage for a single mom of two children is $33.83/hour.  Prior to the pandemic, there was a critical shortage of direct service workers due to low wages, limited benefits and high turnover. Limited access to PPE, risk of exposure to SARS-CoV-2, lack of accessible childcare, long work hours, and limited availability of safe transportation have all been identified as reasons why the workforce crisis has worsened during the pandemic.

There are 4.5 million home health clients and a direct and home health workforce of nearly 6 million. Over 20% of Americans are caregivers and mostly this work is unpaid. Some of the consequences of providing unpaid caregiving include work loss and economic instability which contribute to a cycle of poverty for many families. Opportunities to improve the lives of people with disabilities by supporting families caring for people with disabilities in their homes include paying family caregivers and strengthening the Family Medical Leave Act. The RAISE Family Caregiving Act’s Advisory Council will be developing a national strategy that will hopefully address many of the issues family caregivers currently face.

Moving forward, we need a strong commitment to transitioning people from institutional settings to their home and communities with an emphasis on empowering people with disabilities. When someone is integrated into their communities, the money should follow the person: Money Follows the Person should be permanent. As required in the draft HCBS Access Act, HCBS should be mandatory and adequately funded so that everyone who needs to access HCBS can. This will require workforce development. Paying family caregivers, allowed in some states, would strengthen the workforce and reduce poverty. To better support families, the spousal spend down requirement should be eliminated. Every state should have Medicaid expansion and we need assurances that Medicaid won’t be block granted because people with disabilities could receive less than they need and deserve due to spending cuts. As part of pandemic preparedness, system level emergency planning is necessary. Also, people receiving HCBS need individualized actionable emergency plans as part of their person-centered care plans. While required in the 2019 PAHPA legislation, the National Advisory Committee on Individuals with Disabilities and Disasters has not yet been formed. It is my recommendation that that committee includes members with disabilities and experts in health equity. 

As we consider ways to make sure all people with disabilities have the opportunity to live their lives as they desire, we know our advocacy is essential to making that goal a reality. Now is a great time to share wisdom with about HCBS.