By: Kathleen Stoll
April 15, 2022
For years, I volunteered at an Easter egg hunt for the families of nursing home residents. It brought joy to the residents to watch the kids, but, inevitably, some would spend the day begging their families to let them go home. It was always a bittersweet day.
Historically, Medicaid-eligible people who needed help with things like remembering to take their medications, preparing their meals, bathing and doing their grocery shopping were institutionalized (placed in a nursing home or other long-term care setting) to receive these services. The Medicaid program would not pay for these services unless they were provided in an institution.
In 1981, federal law was amended to allow states to create Medicaid Home and Community- Based Services programs that would pay for home-based services for the elderly and people with intellectual or developmental disabilities, physical disabilities and/or mental illnesses.
But this “rebalancing” to HCBS has been slow. States struggle to have the funding to support an expanded HCBS program.
President Joe Biden’s 2023 federal budget calls on Congress to add new funding for “home and community-based services.”
States did receive new temporary HCBS federal funds through the 2021 COVID-19 stimulus package. But a one-time funding increase isn’t enough. At a recent Senate Special Committee on Aging hearing, Anne Tumlinson, CEO of ATI Advisory, had a great quote on the continued need for HCBS funding:
“To stop here would be like bringing an umbrella to a hurricane,” she said. “The number of individuals in our country who are 85 years and older will double by the year 2035. That population is ...much more likely to have high needs. At the same time, caregivers available to take care of them are declining. Much more federal investment is needed to galvanize and support states and communities in developing [HCBS] infrastructure ”
Why should funding for HCBS be a top issue for the West Virginia congressional delegation?
First, West Virginia has a high proportion of elder folks, and our older population is growing rapidly. West Virginia already ranks third among the states for the rate of residents age 65 and older and second for residents over 75.
West Virginia faces a high 31% old-age dependency ratio — the population age 65-plus divided by the population ages 16 to 64. It is an economist’s fancy term for the financial pressure our aging population puts on young families and our state to deliver care and support.
Second, we have an underpaid HCBS workforce — and improving their pay, training and professional status is a matter of race and gender equity. HCBS workers, mostly women and with a higher proportion of women of color, face heavy workloads, high injury rates and emotional exhaustion. I have been a West Virginia HCBS worker. I remember coming home from a day of caring for a wonderful, frail elder gentleman and collapsing in my driveway crying. It is challenging, vitally important work.
Yet, HCBS workers do not even make enough to support their own families. They make less than other entry-level workers in fields like retails sales, janitors and phone customer service reps. The average wage for home care workers was $13.56 an hour in 2020, average earnings were $20,200, and 44% had to rely on some form of public assistance, such as
Medicaid, nutrition support or cash assistance.
Third, HCBS funding is a broader West Virginia workforce development issue. Beyond creating a trained and better-paid, expanded cadre of HCBS workers, a strong HCBS system would open the doors for other West Virginians to enter the workforce. West Virginians, again usually women, are forced to leave the workforce to care for an elder or disabled loved one at home. Seventy-five percent of all caregiving is done by family members — who too often must sacrifice jobs and needed income.
Many West Virginians want to go to work with the peace of mind that a loved one at home will be cared for properly and respectfully — that grandma or a disabled child will be safe.
Our congressional delegation should unite to support funding to raise the wages of home health care workers, to provide these workers with training and support, and to make HCBS services more affordable for all West Virginia families.
Kathleen Stoll is policy director for West Virginians for Affordable Health Care (wvahc.org) and operates a policy and economic consulting business, Kat Consulting.