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Independent Living News & Policy from the National Council on Independent Living

Resources for Reconciliation / HCBS Advocacy

October 5, 2021

Better Care Better Jobs Act

Polling Data

  • Hart Research Associates (September, 2021): 85% of people surveyed (1,001 registered voters) support Congress improving the availability of quality affordable home care (p.2, p.8), including 72% of Republicans (p.8). 90% of people surveyed expressed a preference for care at home over institutional care (p.7)
  • Morning Consult & Politico (August, 2021): 81% of people surveyed (1,997 registered voters) support including expanded home care for older adults and disabled Americans in the reconciliation package (p.14)
  • The American Directions Research Group (August, 2021): 98% of people surveyed (1,400 registered voters ages 50 and older) consider it important to be able to choose where long-term care is provided (p.3), and 87% support increasing resources for in-home care (p.10), including 82% of Republicans (p.10) 
  • Data for Progress (August 2021): 77% of people surveyed (1,184 likely voters) support the Better Care Better Jobs Act, including 66% of Republicans (p.1). 79% support providing funding for states to expand their HCBS programs specifically, including 71% of Republicans (p.1), and 81% support ensuring states continue to improve the accessibility and quality of their HCBS programs, including 74% of republicans (p.2)
  • Data for Progress Blog

Other Reports and Resources

  • Moody’s Analytic: Macroeconomic Impact of Home and Community-Based Services Expansion (September, 2021)
    • Key findings/quotes:
      • “The economy will receive an immediate boost from this increased government spending along with a lift in long-term growth from higher labor force participation, particularly by low-income females who are currently most likely to provide home care.” (p.2)
      • “The expansion of Medicaid home and community-based services for the elderly and disabled results in a modestly stronger economy over the coming decade, with higher GDP and more jobs…” (p.3)
      • “The policy boosts near-term economic growth as the government spending to provide the expanded services increases…Long term, the economy receives a lift from this policy, as it supports higher labor force participation and labor force growth.” (p.3)
      • “By 2031, the policy increases real GDP by almost .2 percentage point and raises employment by nearly 300,000 jobs…And despite this large increase in jobs, it just keeps pace with the growth in the retirement age population and is the minimum needed to address the severe shortage of home and community-based services.” (p.3)
      • “This policy also includes greater investments in higher wages and benefits for essential homecare workers, which will be critical to attract much-needed workers to this occupation… It will also reduce the high turnover rates that undermine the ability to provide high-quality services to the elderly and disabled.”  (p.3)
      • “The elderly and disabled population is large and will grow quickly in coming decades, putting enormous strain on the already-fragile system that provides vital care to these Americans. Without additional support, the system threatens to buckle.” (p.3)
  • University of Kansas (UK) Center for Research on Aging and Disability Options (CRADO) and Topeka Independent Living and Resource Center (TILRC) study on the impact of COVID-19 on HCBS: Direct Support Workers: An Essential Workforce Surviving on Poverty Wages (September, 2021)
    • Key findings/quotes:
      • “Finding and retaining quality direct support workers is the most frequently cited challenge among consumers, providers, and caregivers so far; and it is also often cited as the most difficult challenge to address. At the same time, good quality workers are frequently cited as the most important resource in the HCBS system, providing essential care that keeps people out of nursing homes…Stakeholders on our advisory board also report an increase in nursing home referrals from care coordinators due to consumers not being able to find any home care staff.” (p.1-2)
      • “One consumer on the I/DD waiver spoke of going two weeks without a shower when she did not have a backup worker while her staff person was in quarantine. Another consumer, on the BI waiver, required transfer standby assistance while waiting for home modifications but could not find workers. She ended up falling while transferring to the toilet without support, resulting in a concussion thus compounding her original brain injury. She also spoke of food insecurity when she did not have a worker to go to the grocery store for her and home-delivery services were not initially available for SNAP food assistance users.” (p.1)
      • As one home care agency provider stated plainly, “We need higher pay, period. All of our other issues at this point will be resolved by higher pay. It’s one thing when you ask somebody to put themselves in harm’s way for a livable wage, but when you ask them to do that for under a livable wage, that’s awful.” (p.2)
      • “Home care agencies turned to CARES funds to help strengthen their workforce through hazard pay (to increase wages), paid sick leave (to support staff staying home when ill or quarantining), or overtime pay (to continue serving clients with fewer staff). Although this support was very helpful, it did not solve their staffing struggles nor do these funds offer a long-term solution to the low reimbursement rates in the industry…Additionally, self-directed consumers largely did not have access to CARES funds or other resources to offer hazard or sick pay to their workers during the pandemic.” (p.2)
      • As shared by an older DSW who has worked in this field for a long time and cared for three different consumers during the pandemic, “I’m getting ready to retire anyway. But still, I put in my time and I’m gonna walk away with nothing, really, just because I helped. ….I can’t emphasize this enough, who’s going to take care [of the] caregivers? So that’s why those sick days and vacation time, that’s really important. If you want your client to get top quality care, we need care too.” In addition to the fact that it’s difficult to afford unpaid leave, she feels she cannot take a vacation because her clients would go without care as there is no one to fill in during her absence.
      • An FMS provider reported, “We have one “client” currently that is pretty insistent that their worker should be vaccinated. The worker doesn’t really want to get vaccinated, but they want to keep the worker…. People keep, have kept, workers that they really didn’t want to keep because they couldn’t find anybody else. That’s still a problem today.” Consumers too often find themselves in a position where they have to make a difficult decision between accepting a lower quality of care or having no care, often compromising safety in order to remain at home.
  • Center for Budget and Policy Priorities (CBPP): States Are Using One-Time Funds to Improve Medicaid Home- and Community-Based Services, But Longer-Term Investments Are Needed (September, 2021)
    • Key finding/quote:
      • “The one-time funding states have now from ARP provides a solid foundation for more systemic improvements that will help seniors and people with disabilities live in the community, including additional investments in HCBS and expansions of other critical supports such as housing vouchers. The ARP funding for HCBS will also help to shore up strained systems and reinforce the stretched direct service workforce. But this one-time injection of new funding is insufficient to sustain the kind of long-term improvements that have been needed to improve access to HCBS since before the pandemic began.”
  • Justice and Aging & Medicare Rights Center: Investing in Medicaid HCBS is Good for Medicare (September, 2021)
    • Key findings/quotes
      • “Making HCBS more available to people with Medicare who are dually eligible for Medicaid would reduce Medicare expenditures. This includes reducing costs by helping more older adults transition to and receive non-acute care in the community.” (p.1)
      • “Enhancing state Medicaid programs’ capacity to serve people with Medicare in the community would strengthen the Part A Trust Fund. Because the HCBS system is currently unable to serve everyone who is eligible, people with Medicare often lack access to the very services that could defer the need for costly acute and post-acute care, which is funded through the Medicare Part A Trust Fund.” (p.2)
  • ANCOR: The State of America’s Direct Support Workforce 2021 (September, 2021)
    • Key findings/quotes
      • 77% of providers reported they are turning away new referrals due to insufficient staffing
      • 81% of providers reported they are struggling to achieve quality standards due to insufficient staffing
      • 40% of providers reported seeing higher frequencies of reportable incidents than they had prior to their recruitment and retention challenges