The U.S. needs a system that provides universal access to a comprehensive range of health care services and long-term services and supports (LTSS). Consumers and their families need to be educated about their risk for needing LTSS and the lack of coverage for LTSS through Medicare and health insurance. The public and private sectors can assist consumers as they consider all their options for financing LTSS and choose among them.
Some resources already exist. Aging and Disability Resource Centers (ADRC) and No Wrong Door (NWD) systems—known as single-entry points—provide education, guidance, and conflict-free advice about LTSS options. They can also assist in making informed decisions. Programs can provide a wide array of supports that emphasize the maintenance of independence, dignity, autonomy, and privacy for individuals to maximize their physical and psychosocial potential.
Because the full cost of LTSS benefits is too expensive for many Americans, financing provisions for LTSS programs need to take affordability into account. These provisions must be sustainable for programs overall. A financing package needs to adequately address transition costs as a new program is phased in.
A new system needs strong consumer protection standards and enforcement mechanisms. State ADRC/NWD systems operate best with consumer and other stakeholder input and oversight. They are meant to provide conflict-free counseling and referrals to a comprehensive range of services. It is essential that the services and supports that consumers receive be largely self-directed, whether financed through private family resources or public programs. Evidence shows that many consumers who receive a cash benefit manage their LTSS more economically than those who receive benefits under an agency-administered model.
COMPREHENSIVE REFORM: Policy
COMPREHENSIVE REFORM: Policy
Federal policymakers should develop a comprehensive system for financing Long-Term Services and Supports (LTSS) that includes a new social insurance program to provide a basic level of LTSS. The program should be designed to function seamlessly with a mix of other financing sources. Those sources should include private long-term care insurance, out-of-pocket expenditures, and Medicaid for individuals with low incomes.
The public and private sectors—including the Social Security Administration, the Centers for Medicare & Medicaid Services, and health insurance carriers—should coordinate with each state's Aging and Disability Resources Centers/No Wrong Door systems to educate consumers and their families about the possibility of needing LTSS, the lack of coverage for LTSS through Medicare and health insurance, and all options for financing LTSS. Doing so helps consumers understand their options and responsibilities and make informed choices best suited to their needs and circumstances.
New funding sources
Ideally, the federal government should finance LTSS through a universal, comprehensive, and publicly administered program such as Medicare or similar social insurance program of shared risk.
LTSS financing proposals, whether state or federal, should be evaluated on the extent to which they are progressive, broad-based, stable, affordable, and capable of growing with enrollment.
Progressive financing and low-income protections
Program participant cost-sharing for either community or institutional services should be modest. It should not favor one type of service over another. To protect people with low incomes, public funds should contribute to their cost-sharing requirements.
Adequate financing and reserves
Some tax revenues for a new LTSS program should be earmarked to an LTSS trust fund. This would build adequate reserves to cover later generations. The new LTSS program should require some maintenance of states' current spending on LTSS to help defray the federal government's costs.
Essential features of an LTSS social insurance program
The federal government should create a public social insurance benefit that provides coverage for LTSS. It should be within Medicare or in a new public program.
Benefits should enable consumers to choose services most appropriate for their needs.
Strong federal and state oversight should ensure the equitable treatment of all people eligible to receive services. People must have equal access to services regardless of payer.
Care management should be used to coordinate health care and LTSS for people who need both types of services. Care management should be conflict-free, multidisciplinary, and available to all, regardless of payer.
The system should build on states’ experiences or require state and local agencies to have a major role in running any new program.
States should be required to implement a single point of entry for LTSS to determine financial and program eligibility and authorize services promptly.
Assessments to determine eligibility for services should measure the need for assistance caused by functional limitations without regard to whether the person being assessed has family who can assist with the care. This includes the need for assistance with activities of daily living and instrumental activities of daily living. It should also measure the need for long-term nursing services, medical management, and supervision due to cognitive and other mental impairments and behavioral problems.
Federal and state governments should consistently apply a standardized assessment to determine consumers’ needs.
A full range of home- and community-based services should be provided to delay or prevent institutionalization and help to control overall LTSS costs. These services include but are not limited to personal care in the home, case management, respite care, adult day services, accessible transportation, and supportive housing.
Consumer-directed LTSS should always be available, promoted, and supported, regardless of payer or provider. Federal and state agencies should offer consumers the option of a cash payment to select and manage their LTSS.
Services from all providers should be designed and delivered in a way that promotes independence.
The program should not provide financial incentives to use one type of care over another.
If federal and state governments use capitated payment systems, they should require strong consumer protection standards. Capitated rates must be sufficient to meet the needs of those served and allow consumers to choose the services that best meet their needs.
Intermediate steps for comprehensive reform
Until a comprehensive national LTSS program is implemented, the following intermediate steps should be taken:
- States should implement affordable LTSS programs for those who do not meet Medicaid’s eligibility requirements but still cannot afford LTSS. State programs should be designed to function seamlessly with other financing sources. Those sources should include public or private long-term care insurance, individuals' out-of-pocket expenditures, and Medicaid for individuals with low incomes. Support for a state-run long-term care benefit will be evaluated based on several factors such as financing, eligibility, benefits, and consumer protections.
- Coordination among LTSS programs —and between the health care and LTSS systems for people who need services from both—should be improved.
- Services in consumer-preferred settings—primarily the home and community—should be expanded, along with increased efforts to strengthen the LTSS workforce.
- Services that support family caregivers' ability to continue providing care should be included in the expansion.
The federal and state government should conduct regular, thorough, and consistent oversight. Oversight should include evaluation of consumer outcomes to the extent feasible.
They should ensure quality of care and quality of life for all consumers. The rights of the consumer should be protected in all LTSS settings.
Consumers and their family caregivers, as appropriate, should be the focus of all LTSS programs and services.
LTSS consumers, including those from diverse communities, should participate in all aspects of program development, implementation, and oversight.
Consumers, including participants in public programs, should have the option to make decisions about the LTSS they receive and to manage their services and supports. If they are not able to do so, caregivers or legal representatives should be allowed to act in their place.
Coordination with other health programs
Medicare coverage of health services for those with chronic illnesses and disabling conditions should be improved (see also the following sections in Medicare and Chronic-Care Coordination and Accountable Care Organizations). Medical care management should be used to coordinate health care and LTSS for people who need both types of services. Care management should be conflict-free, multidisciplinary, and available to all, regardless of payer.
Covered services should be fully portable so people can receive them in a wide range of settings.
The effects of integrating other public LTSS programs, such as state-funded and Department of Veterans Affairs programs, into a new system should be carefully considered to ensure that program changes enhance participant access. Existing programs should receive adequate federal funding to ensure veterans' access to LTSS.
Flexible, innovative, and efficient administration
A reformed LTSS system must have an administrative structure capable of meeting the needs of diverse and growing numbers of beneficiaries.
Access to home-and community-based services
Eligibility for services should be based on how LTSS relate to an individual's functional needs, chronic illness, and medical conditions.
Medicare's potential role in meeting Medicare beneficiaries' LTSS and medical needs should be reexamined and expanded to assist people who depend on family caregivers. It should include improved home health care and skilled-nursing facility benefits, personal care designed to help people with ADLs, adult day care, and other caregiver support services, such as assessment of caregiver needs, education and training, and respite care.
Improved Medicaid benefits should serve as an LTSS safety net for vulnerable populations with low incomes and few assets and those who become impoverished because of medical or LTSS needs.
Services provided through the Older Americans Act and Social Services Block Grants, which are vital to the home- and community-based LTSS system, should receive adequate funding.
Conflict-free care management should be available through public agencies to help individuals and their families access the full range of LTSS.
Long-term care insurance (LTCI)
LTCI should be subject to stronger consumer protections and greater standardization so that consumers can make informed comparisons among policies.
A comprehensive new program can be introduced gradually. The program should cover people who currently need services and build an adequate program for future generations through a range of financing resources.
Unnecessary institutionalization should be avoided. Home and community-based services—such as home care, conflict-free care management, personal care, respite care, adult day services, and supportive housing—should be utilized to control the costs associated with LTSS (see also Home and Community-Based Services).
In order to help control LTSS costs, federal and state governments should use a standardized assessment in a consistent manner to determine the program participant's needs. The assessment should inform the service plan in addressing the person's goals and needs. Longitudinal information from this assessment should be used to evaluate consumer outcomes and monitor quality of care. A universal core of assessment items should be developed and implemented across health care and LTSS systems so that consumer outcomes can be tracked.
Federal and state governments should ensure that standardized systems collect data on service use, costs, and quality, particularly for Medicaid and Medicare. Accurate and timely LTSS data are central to evaluating services and consumer outcomes and making sound policy decisions regarding the cost-effective allocation of financial resources.
Fraud and abuse
Federal and state governments should adequately fund Medicaid fraud and abuse units. They should also investigate and prosecute providers in any services and supports setting who defraud Medicaid or abuse program participants.
Conflict-free care management
Conflict-free care management should ensure effective and efficient coordination of high-quality consumer services.
Financial incentives should be aligned. Appropriate protections should be in place to ensure that individuals receive the LTSS they need at a reasonable cost. Costs should not be unacceptably high and must provide value for the government, consumers, families, and taxpayers and be efficient and effective. Costs should also not be so low that they result in poor-quality, insufficient, or not enough care. Organizations and governmental agencies that provide any care management should share the financial risk of cost overruns and the financial rewards of effective cost containment. These include managed long-term services and supports, also known as MLTSS, health maintenance organizations, and social health maintenance organizations.
Effective governmental oversight (e.g., periodic audits and look-back surveys) must be in place to help prevent conflicts of interest within the care-management system.
Social insurance program costs should be supplemented with private payments as long as cost-sharing requirements do not unduly burden people with low incomes.