Tag Archives: Family caregivers

2023 AARP Report Recommends Supports for Family Caregivers

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Many older Americans choose to have their family members care for them as they age. Despite the comfort a familiar face may provide, there is a significant cost for the loved ones who sacrifice their time, and often their upward economic mobility, to ensure that they can secure proper care for their senior parent.

In a report issued in March 2023, AARP stresses the importance of supporting family caregivers in their financial, emotional, physical, and professional lives. The analysis gives a glimpse into the experiences of family caregivers and also offers recommendations on policies, practices, and programs – across public as well as private realms – that policymakers should consider enacting or enhancing in support of caregivers and the individuals who are in their care.

How Much Does It Cost to Be a Family Caregiver?

Being a family caregiver can come at a great financial cost. The average cost of caregiving has risen exponentially in the past several years, and the trend is expected to increase more over time.

In its report, AARP estimates the value of family caregiving in 2021 at $600 billion dollars in unpaid contributions – up from $470 billion dollars in 2017.

The monetary value of caregiving is not the only cost of care. For family caregivers, some of the intangible costs of included:

  • spending an average of 18 hours per week to tend to the needs of their loved ones
  • facing higher risks of chronic loneliness, which may have negative health effects
  • neglecting their own self-care

What Are the Major Issues in Family Caregiving?

According to the AARP report, by 2034, the population of people over 65 will outnumber the population of children under 18. With this historic shift, the researchers suggest that the impact on family caregiving will become even more prominent in several key areas:

The Need for Tailored Support for Diverse Caregivers and Their Families

Family caregivers across diverse cultures, ethnicities, sexual orientations, and gender identities often face concerns about access to support that is specific to their community. Ensuring that affordable, inclusive, readily available policies and services are in place to meet these needs of these caregivers will continue to be critical.

Direct Care Workforce Shortage

Amid a shortage of professional caregivers that only worsened during the COVID-19 pandemic, AARP notes that the turnover rate among the direct care workforce averages between 40 percent and 60 percent each year. Failing to recruit and retain a dedicated workforce in caregiving as the aging population grows will inevitably add to the burden carried by unpaid family caregivers.

Economic Impact on Working Caregivers

Most family caregivers – nearly two-thirds of them in 2019, according to AARP – hold a full- or part-time job in addition to caring for their loved ones. These workers often take an economic hit because they need to split their time between their jobs and their home responsibilities.

Without such supports as telecommuting, paid leave, and respite care, they may have no choice but to call out of work, turn down promotions, or even leave their job altogether to dedicate themselves fully to providing care. This can then mean additional financial stress as well as adverse effects on their career and future earning potential.

A Growing Sandwich Generation

In 2019, about 30 percent of older Americans were living with their children or grandchildren. The so-called “sandwich” generation represents those who are responsible for caring for their children and their aging parents at the same time, while also working. These caregivers, who are likely to report more emotional and financial pressure, now tend to include workers across an ever-expanding age span – from 35 to 64.

Recommendations

The AARP’s report recommends specific policies and practices to support family caregivers going forward. These recommendations to policymakers include the following:

  • Including family caregivers in planning and decision making across health care settings
  • Improving access to respite care for family caregivers
  • Ensuring that publicly funded programs and supports for caregivers are inclusive, culturally appropriate, and designed to meet the needs of diverse populations
  • Offering family caregivers a tax credit
  • Expanding protections for workers who rely on the Family and Medical Leave Act and related state programs while providing long-term care for family members, including instituting paid leave for working family caregivers
  • Allowing for other programs that pay family caregivers
  • Improving Social Security benefits for people who provide long-term care services to family members

Additional Resources

Having a care plan in place for your loved ones in advance may help decrease the financial costs and other stresses associated with paying for long-term care for aging adults. Your elder law attorney can help you create a comprehensive long-term care plan that will address the costs associated with tending to the people you love.

Bill Advocates for Seniors Who Seek At-Home Medicaid Care

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Seniors who need assistance with everyday activities such as dressing, bathing, and eating are eligible for Medicaid Long-Term Services and Supports (LTSS). Unfortunately, hundreds of thousands of people who qualify for these services – but wish to receive them in their homes or a community setting – end up on extended waiting lists.

In many cases, these seniors then find themselves with no choice but to live in nursing homes or other institutional facilities for months, or even years, if it is the only way they can access the day-to-day support on which they rely.

A piece of legislation focused on meeting the needs of this population of older adults has recently been reintroduced to Congress by U.S. Sen. Bob Casey (D-PA) and U.S. Rep. Debbie Dingell (D-MI).

Aging in Place: When You Want to Live Independently

Living at home as you grow older can have a positive impact on your physical and emotional health, as well as on your wallet. According to one 2022 study, aging in place includes such benefits as the following:

  • Maintaining a sense of independence and autonomy in one’s community
  • Living in a familiar setting
  • Enjoying a more fulfilling social network
  • Decreasing feelings of loneliness
  • Saving on the cost of long-term care facilities

Where Does the Medicaid Waiver Fit Into HCBS?

Older adults qualifying for Medicaid LTSS who wish to receive services in their home or community generally must wait to be granted a waiver before Medicaid will cover the cost of their home care.

As each state administers its own Medicaid system and waiver program, the wait time can vary depending on where you live. The income and asset thresholds for waiver programs can also differ from state to state, as can the types of home care that are covered.

These are among the main reasons why you may want to consult with your elder law attorney, who knows the rules and regulations specific to the state where you reside.

Home and Community Based Services (HCBS) Access Act

The Home and Community Based Services (HCBS) Access Act, originally introduced in 2021, seeks to secure for these seniors a real choice between receiving care at home or in an institution.

A one-page PDF summary of the HBCS Access Act outlines six specific steps that the proposed legislation is designed to provide:

  • Enhanced Medicaid funding for HCBS
  • Grant funding for states that would develop their capacity to serve individuals who prefer to receive home care
  • Resources for states meant to ensure professional caregivers have stable jobs and wages
  • A stronger workforce in home care
  • Training for family caregivers
  • Improved methods for evaluating the quality of HCBS

According to a 2021 report from Justice in Aging, 25 of the 50 states spend twice as much on institutional care as on HCBS for seniors and people with disabilities.

In addition to seniors eligible for Medicaid LTSS, many people with disabilities would benefit from the legislation if it is passed.

Support From Others

Sixteen U.S. representatives are co-sponsoring the HCBS Access Act, and numerous advocacy organizations for older adults have endorsed the legislation as well.

“I’m helping introduce the HCBS Access Act, which expands Medicaid HCBS funding that will help ensure Americans don’t have unnecessary delays in accessing the care they need,” U.S. Sen. Jeanne Shaheen (D-NH), one co-sponsor, said in a news release about the Act. “This bill is an important investment not only in the accessibility of care, but also in creating better jobs for home care workers and support for family caregivers.”

Earlier this year, Sen. Casey and Rep. Dingell also reintroduced a related bill, the Better Care Better Jobs Act. The goals of this legislation are to boost funding for HCBS, make millions more individuals on Medicaid eligible for these services, and create new jobs for home care workers.

Because Medicaid can be such a complex system to navigate, be sure to consider consulting with your elder law attorney.