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More than three years after the COVID-19 pandemic began, care provided for older people and those with disabilities is still woefully inadequate, according to the latest long-term services and supports (LTSS) scorecard from AARP. The report found major gaps in care in every state, including support for family caregivers, the long-term care workforce, nursing home equity and emergency preparedness.
Minnesota and Washington state were ranked first and second, respectively, in the report, outperforming all other states in how they help family caregivers, offering more options for health providers and more long-term care settings. The lowest scoring states were Alabama (50) and West Virginia (51). Other states in the top tier of long-term services and supports include Massachusetts and Colorado, as well as the District of Columbia.
Journalists can use the data in this report to hold state and federal policymakers accountable in providing services to older adults and people with disabilities, such as caregiver tax credits, anti-discrimination laws, paid family leave and home and community-based services.
“State action is generally falling short of what the aging population needs so that people can live their final years, or even decades, in dignity with access to the best care possible,” said AARP Public Policy Institute Vice President Susan Reinhard. “We know there’s no magic bullet to reform long-term care systems overnight, but data can guide not only state lawmakers on smart policies and initiatives for the future, but also provide the federal government with a window into what works and why.”
And some emerging issues deserve more attention, like the readiness of nursing homes to confront natural disasters or what plans are in place to grow and maintain their workforces, Reinhard said.
Why it matters
This is the fifth edition of the scorecard. It identifies strengths and weaknesses in state systems, hoping to prompt more innovative solutions at the local, state and national levels. Many states are grappling with budget shortfalls and have cut numerous programs and services that support their aging populations and those who help care for them.
As with prior reports, this scorecard assessed 50 individual indicators within five dimensions of care:
- Affordability and access.
- Choice of setting and provider.
- Safety and quality.
- Support for family caregivers.
- Community integration.
Several new indicators which don’t fall under the purview of a single state agency were added this year, including affordable housing for people with disabilities, disaster planning and more livable, age-friendly communities.
Among the key findings from the report:
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- Only six states — Georgia, Missouri, Montana, New Jersey, North Dakota and South Carolina — provide a tax credit for family caregivers’ out-of-pocket expenses.
- Oklahoma enacted a caregiver tax credit bill in June, after data for the Scorecard was collected.
- Family caregivers on average spend $7,200 per year on out-of-pocket costs.
- Most states do not have statewide laws protecting caregivers from discrimination in the workplace that ensure they are not unfairly treated due to caregiving duties outside of work. Only seven states have such laws: Alaska, Connecticut, Maine, Minnesota, New Jersey, New York and Wisconsin.
- Twelve states have enacted paid family leave laws and 18 states have paid sick day laws, which can be used for caregiving.
- Only six states — Georgia, Missouri, Montana, New Jersey, North Dakota and South Carolina — provide a tax credit for family caregivers’ out-of-pocket expenses.
- Dozens of states had declines in the number of care choices that help support families managing caregiving. For instance, 21 states experienced declines of 10% or more in adult day services since 2016, and 16 states had declines of 10% or more in access to home health aides since 2019.
- There has been a surge in older adults receiving long-term care at home rather than in nursing homes and other institutions. For the first time, more than half (53%) of Medicaid long-term services and support spending for older people and adults with physical disabilities went to home and community based services (HCBS) such as home care aides, respite services, assistive technology and home modifications. This is up from 37% in 2009.
- The average annual per-person cost of home care in 2021 was $42,000 (for 30 hours of weekly care at $27 per hour).
- Eleven states had state policies that improve presumptive eligibility for Medicaid HCBS at the time of data collection, making it possible for people to go home to receive care after being in the hospital, rather than having to be admitted to a nursing home while their eligibility for Medicaid payments is being determined.
- Many states have large numbers of people with low care needs living in nursing homes, indicating a lack of home and community based access and services. More than 20% of residents in Montana, Kansas, South Dakota, Oklahoma and Missouri have residents with low needs, compared to 9% nationally.
A workforce and staffing crisis
There’s also a major workforce crisis in nursing home care. In every state, direct care worker wages are lower than those for comparable occupations — ranging from $1.56 to $5.03 per hour. New York, California, Texas, Louisiana and Washington, D.C., offer the least competitive wages. Nationally, more than half of nursing home staff (53.9%) leave their jobs within a year. Montana, Vermont and New Mexico have the highest staffing turnover averages.
Staffing disparities are also a significant challenge. Residents in nursing homes with high admissions of Black residents receive almost 200 fewer hours of care per year compared to residents of nursing homes with high admissions of white residents, the report found. And nationally, only about one-fifth (22%) of nursing home residents live in a facility with a 5-star rating. And worker shortages and inequities lead to persistent care problems. About one in 10 nursing home residents experienced a pressure sore, which can be life threatening and lead to bone or joint infections, cancer and sepsis.
Most nursing homes are unprepared for a crisis. Only nine states have enhanced hazard mitigation plans for natural disasters and other emergencies to address the needs of vulnerable older adults and people with disabilities, including for nursing home residents.
On the positive side, there’s been some progress toward innovative and effective alternatives to traditional nursing home models. The report noted that 10 states have made progress in innovative care models such as Green House Nursing Home availability and policies, which includes small facilities, private rooms, and other best practices.
Better programs, services and staffing are crucial
Stronger policies and programs to support long-term care and aging at home are needed, the report concluded, including:
- Support for the approximately 48 million family caregivers, such as paid family leave, tax credits and other means to offset the estimated $600 billion in unpaid care.
- More investment in home- and community-based programs, such as better training for home health aides, more coverage of medical devices and equipment, and updating key Medicaid regulations and payment models.
- Improving the nursing home and in-home workforces via better recruitment, more training, higher pay and expanding scope of care for some community health workers and paraprofessionals.
- Addressing the significant inequities that exist in access to care and the quality of care in facilities; expanding use of innovative models for nursing homes can address some of these issues.
“Most Americans want to be in their community to the fullest extent possible,” said AARP Public Policy Institute Caregiving Senior Director Rita Choula in a statement. “Unfortunately, family caregivers are stretched thin to help make that a reality. While states recognize this as a growing area of long-term care, they have a long way to go to provide the extent of relief that family caregivers truly need to support countless loved ones.”
States need better plans for dealing with their aging populations, which allow more peopleto remain in their homes and communities. This includes more affordable housing and more age-friendly transportation. The report urges every state to develop a sound emergency preparedness plan to support nursing home residents when crises such as natural disasters, power outages and disease outbreaks occur. Several states have developed master plans for aging, but most have not yet done so. Holding policymakers accountable for enacting such strategies would significantly mitigate many of the challenges raised in this report.
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