Will state efforts to Support Older Adults and their caregivers succeed? Understanding the complexity of healthcare systems and that navigating care is difficult for the average person may not be easy to understand if you are not in this situation.

Will State Efforts to Support the Elderly and Their Caregivers Work Without Federal Support?

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Widespread challenges exist among providers in health and social care systems that vary by state. Due to the narrow focus of federal and state agencies, there can be a lack of coordinated efforts to meet the needs of aging adults, persons with disabilities, and their caregivers.

Federal and state legislation often duplicates the efforts of state agencies that might be combined for social good. Even still, state agencies with different goals struggle to coordinate often duplicated efforts.

This article focuses on four areas with the potential to impact access to aging services positively by sharing:

• Insight into the challenges of accessing programs and the daily experiences of older adults and their caregivers.
• How federal and state efforts to support older adult services and program design can make it challenging to coordinate and evaluate outcomes.
• Steps states are taking to investigate or enact legislation for payroll deductions to support long-term care insurance programs.
• Opportunities for older adults and their caregivers to participate in events that can shape the design of older adult programs and services.

In each section, questions for consideration are posed about the potential to increase the effectiveness and efficiency of programs.

1 Older Adults and Their Caregivers Experience Difficulty Accessing Programs

Older adults affected by health concerns and other factors—like a lack of transportation—can find getting help from health care or social service programs difficult.

A lack of trust that hinders participation is also a factor for many older adults and their caregivers who do not understand the constraints or regulations that exist for government programs or healthcare systems.

Additionally, social determinants of health factors, including a lack of transportation and financial difficulties like paying for rent, utilities, prescriptions, or groceries, can pose significant health risks. Not everyone has the support of a spouse or a family caregiver to work through these challenges, which can require emotional strength and persistence.

For example:

• Scheduling and attending a doctor’s appointment or completing forms to qualify for services can be difficult for individuals with low health or financial literacy.
• If English is a second language, trying to make sense of medical terms, care recommendations, or how programs work can result in hesitation to participate.
• Individuals who are isolated and live in unsafe neighborhoods or rural areas may be unable to afford or have easy access to support services.

While many state efforts to support older adults and caregivers exist, the ability to participate can depend on factors unrelated to health, like attending to daily needs. There are also some circumstances where individuals commit time to apply for programs and are denied due to the narrow focus of a program or a requirement that cannot be met.

• Knowing that older adults and their caregivers struggle to navigate healthcare systems and experience other factors that make participation difficult, what solutions might be most effective to support participation and gain trust?

2 Program Design Can Limit or Impede Coordination Across Agencies

Programs that support older adults, disabled persons, and their caregivers flow down to states from various federal agencies. The challenge is that some of these programs are designed to focus on narrow populations or needs.

Instead of making it easier for older adults and their caregivers to receive support, many are denied participation. Additionally, many struggle with the time involved in applying for programs or repeating the same information to agency after agency.

These siloed programs can eliminate the potential to establish foundations to build broader initiatives to help more people.

• Programs designed to address social determinants of health, health-related social needs, health equity, population health, health policy, and public health often overlap because they rarely consider the benefits of cross-agency coordination and implementation.
• Outcome-related goals like return on investment (ROI), data analysis, risk management, outcome identification, and lowering healthcare costs can be prioritized over the needs that older adults and their caregivers consider essential.

As a result of disconnected programs that are not designed for collaboration, funding for state efforts to support older adults and their caregivers can be duplicated. When communication of programs that have the potential to support shared goals does not happen, the result can be an inefficient use of time, effort, and money.

Unfortunately, these fragmented approaches that arise from agency or program silos can prevent programs from solving for a broader range of individual circumstances.

• Recognizing the fragmentation at federal and state levels that results in duplicative spending, what guardrails can be placed requiring analysis of like programs before approving new initiatives?
• What steps can consumers take to become aware of programs and funding that impact access to and participation in services?

Recognize, Assist, Include, Support, and Engage Family Caregivers Act (RAISE) of 2017

Examples of programs by separate agencies with similar goals are shared in this section.

The RAISE Family Caregiver Act of 2017 (Recognize, Assist, Include, Support, and Engage Family Caregivers Act), is administered by the Asministration for Community Living.

One initiative of RAISE is to identify and document existing federal programs and activities to ensure maximum effectiveness, avoid unnecessary duplication, and identify, and disseminate best practices to state and local efforts to support family caregivers.

On September 21, 2022, a national strategy to support caregivers was delivered to Congress. The 2022 National Strategy to Support Family Caregivers has many recommendations; however, it does not include a strategy to ensure effectiveness and avoid duplication of programs.

Admittedly, the goal to avoid duplication is an immense task given the expanse of government programs at federal and state levels; however:

• As government spending for healthcare continues to escalate, should there be mandatory requirements to avoid duplication and ensure cost-effective results for federal and state efforts to support older adults and their caregivers?
• Can a strategy be developed to use federal and state healthcare budgets more effectively by shifting duplicative funds to other efforts or eliminating programs that don’t work?

To elaborate on duplication for family caregiver support programs, below is an example of two federal agencies—the Administration for Community Living  (ACL) involved with the RAISE Act of 2017 and The Centers for Medicare and Medicaid (CMS)—offering programs for older adults and their caregivers specific to Alzheimer’s and dementia.

The Administration for Community Living (ACL)

The Administration for Community Living supports older adults, disabled persons, and their caregivers. The ACL also funds grants for state governments, non-profits, and community-based organizations.

During the summer of 2023, a grant opportunity for an Opportunity for an Alzheimers Disease Initiative (ADPI) was announced for states to expand dementia-specific home and community-based service (HCBS) programs.

• Why would the agency tasked with ensuring effectiveness and avoiding unnecessary duplication—intentionally duplicate efforts?
• Do concerns exist that if ACL budgets are not spent in a fiscal year, next year’s budget allocation may be lowered, pressuring agency staff to spend funds on duplicative programs?
• While understanding reasons for program duplication may be difficult, do program and communication gaps exist between government agencies having clinical or medical goals,  like CMS, and those with social goals, like ACL?

Similar challenges related to goals and a shared language exist between physical, mental, and behavioral health and social care organizations that are not government funded.

Centers for Medicare and Medicaid (CMS)

The Centers for Medicare and Medicaid (CMS) offer programs to support family caregivers and vulnerable adults. These include hospice, Medicaid Waivers 1915 (b) (c) (I) (j) for family counseling, home and community-based services, self-directed personal assistance, and other support programs.

Many states are currently developing Medicaid Waiver 1115 programs to support coordination across clinical and social care specific to assessing and coordinating care to solve social determinants of health factors.

CMS programs at the federal and state level support care for older adults. The programs you may be most familiar with are original Medicare and Medicare Advantage programs. These programs include hospitalization, outpatient, pharmacy, and other benefits.

The GUIDE Model

A program similar to the ACL Alzheimer’s disease initiative offered by CMS is Guiding an Improved Dementia Experience Model (GUIDE), introduced in 2023.

Included is support to a 24/7 hotline, caregiver support, and training. The program aims to extend the time older adults live in their homes while avoiding hospitalizations or delaying nursing home placement,

• Looking at the ACL and CMS programs from 10,000 feet, what is the path to combine fragmented solutions across disconnected agencies focusing on similar problems to offer greater support to older adults and their caregivers at state and federal levels?
• If funding can be provided to ACL to document duplicative funding efforts, can funding be provided to ACL or another agency to establish oversight to evaluate and mandate cross-agency collaboration to reduce siloed programs?

Translating this to a practical idea that consumers might recognize:

• Would you buy ten jars of peanut butter under different brands if you only needed one?
• How many pairs of socks in different colors can you wear?
• If money is not a consideration, is it wise to continue buying more of the same thing just because you can?

Most people with items they no longer use donate to thrift stores so that people who need clothing, furniture, or other items can access them at low or no cost.

While consumers must manage within their budgets and pay their bills, federal and state governments are not held accountable for overspending. The federal deficit continues to grow.

Similar to families agonizing over how to pay for aging parent health care and other needs, government leaders must also have these difficult conversations and be held accountable for balancing state and federal budgets.

Legislation that is passed for benefit today often fails to provide details on the effects of the programs five or ten years into the future. The language in documents describing legislation is well beyond the comprehension and understanding of most consumers.

Let’s look at current legislation through state efforts to support long-term care expenses for older adults.

3 States Investigating or Enacting Legislation for Payroll Deductions to Support Long Term Care

If you are a caregiver or an older adult experiencing health issues, worrying about how to pay for care may be a dinner table discussion in your family. Or you may avoid this uncomfortable discussion altogether.

The ACL report to Congress mentioned above offered twenty-six recommendations for federal and state efforts to support older adults and their caregivers. However, recommendations are only good if action is taken.

• Recommendation 4.4: Improve the affordability of long-term services and supports and reduce out-of-pocket costs for families through public and private payers.

This recommendation, 4.4, may not be easy to understand if you are unfamiliar with the term “public and private payers.”  Public and private payers are insurance companies and federal or state governments.

Individuals reading this recommendation and others in the report may focus on the words “reduce out-of-pocket costs for families” and support the recommendation. After all, who wants to pay more to access health care services?

High care costs, primarily for Medicare beneficiaries who may be underinsured, can limit access to care and result in avoiding care recommendations, including attending doctor appointments and taking medications.

One sign that state governments can no longer afford to absorb out-of-pocket costs for long-term services and support can be identified by research in California and legislation in the states of Washington and New York. This legislation can be considered an action step to support Recommendation 4.4 above but in a different manner: payroll tax deductions.

4 Opportunities for Consumer Advocacy at the State Level

If you live in Washington, California, or New York, you may be aware of legislation that has been enacted or is under consideration to create a payroll tax deduction that creates state long-term care insurance programs.

These are examples of states that recognize that the cost of long-term care is a heavy burden on older adults and their caregivers.

• The question that goes unanswered is why states are moving forward to establish these plans without support from the federal government.
• With federal agency reports confirming the impact of chronic diseases on health and the support needed by caregivers, why are funds not being shifted from duplicative programs to support state-specific efforts to create long-term care insurance programs?

State of Washington WA Cares Fund

In July of 2023, workers began contributing to the State of Washington Cares Fund through mandatory payroll tax deductions, with benefits becoming available for qualified eligible individuals in July of 2026.

Contributions equal a wage deduction of 0.58% per hundred dollars for all full-time, part-time, and temporary workers in Washington, regardless of salary. The long-term care benefit available for individuals who contribute is up to $36,500.

Self-employed individuals must opt in. Federal employees, employees of tribal businesses, and retired or non-working Washingtonians also do not automatically contribute. To receive benefits, individuals must be a resident of Washington.

California Long Term Care Insurance Task Force (Assembly Bill 567)

The Long-term Care Insurance Task Force (LTCITF) has completed a feasibility study currently under review with recommendations for a statewide long-term care insurance program.

The LTCITF is communicating with the California Department of Aging, which is creating the California Master Plan for Aging (CMPA) to be fully implemented by 2030. The California statewide long-term care insurance program targets implementation with a similar timeline.

Interested individuals can learn about and attend virtual meetings for the LTCITF and the California Master Plan for Aging. 

California has been one of the more progressive states supporting that all meetings of a state body be open and public and all persons be permitted to attend any meeting of a state body. The recent passage of SB 544, the Laird Bagley-Keene Open Meeting Act for teleconferencing, supports the ability of consumers to attend and participate in legislative and other meetings.

New York (Senate Bill S9082 – New York LTC Trust Act)

New York, pending legislation to establish the New York Long-term Care Trust Program, is moving forward. The legislation, once approved, will take effect immediately. The program offers a benefit of $100 per day or a maximum of $36,500. Benefits will be available to eligible individuals on the first day of January, five years after the program is established.

However, different from the current Washington program, payroll tax rates may differ by income level, which is yet to be determined.

More information about the Senate bill can be found on the New York State Senate site.

How the efforts of Washington, California, and New York will affect similar legislation in other states remains to be seen.

States leading the charge may be test cases for what works and doesn’t work. The good news is that states are moving ahead independently of the federal government to address the concerns of older adults and their caregivers regarding the financial burdens of care.

Older Adults and Their Caregivers Can Play a Role in Legislation

Older adults and their caregivers become more aware of the positive role they can play in ensuring that programs meet their needs. Providing feedback to legislative bodies and healthcare systems can encourage the development of effective and efficient programs that balance corporate and consumer-directed goals.

• While states are working on individual plans that may not be portable from state to state, what consideration is given to the Federal Long Term Care Insurance Program (FLTCIP) to identify best practices or learning to ensure state programs’ long-term financial stability and feasibility?
• Will or should the federal government become involved in state efforts to ensure the transferability of benefits for individuals who move to other states who may not have long-term care insurance programs?
• What are the unintended consequences of these programs that cannot yet be anticipated for older adults and their caregivers?
• In what ways can older adults and caregivers become more involved in providing feedback for programs to support long-term care costs?

Addressing costs related to long-term care and the escalating cost of healthcare spending in the U.S. has been a source of debate for years. Increased consumer involvement can change this trajectory.

National Health Spending in the U.S. Has Doubled in 20 Years

According to a Health Affairs article, “National health spending per person in the US doubled between 2000 and 2020 and increased as a share of the economy from 13.3 percent to 19.7 percent.”

While healthcare seems to be an ongoing challenge, a significant opportunity exists to change the narrative that healthcare spending in the U.S. is the highest globally, with poorer outcomes than other countries.

What options have not been considered because they conflict with treating chronic disease instead of preventing disease?

Can the adverse effects of chronic disease be reduced by mandating health and financial literacy education beginning in elementary and secondary schools?

By continuing to evaluate duplicative and ineffective programs (instead of assuming that more programs and government spending are the solution), greater opportunities exist to offer beneficial family support, improve outcomes, and manage care costs for older adults, their caregivers, and all populations.

By the information presented here, it is clear there is so much work to be done and that states view efforts to support older adults in ways that support the unique needs of their residents. By becoming more involved, older adults and caregivers can contribute to state solutions for health, social care, and long-term care programs.

Looking for More Information to Support Caregivers and Older Adults? You’ll Find It in Pamela’s Caring for Aging Parents Blog.

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