The following principles reflect AARP’s vision for reforming the finance and delivery of long-term services and supports (LTSS) to promote consumer independence, choice, dignity, autonomy, and privacy, and to ensure that the financing system is fiscally sustainable and affordable to both individuals and the government.
Ensure adequate and sustainable financing through a public LTSS social insurance program, supplemented with private resources and Medicaid, to meet the needs of the most vulnerable—financing LTSS should be equitable and broad-based to ensure that the cost of LTSS is affordable for all. If the cost is spread across the entire population, universal protection can be affordable and equitable. The US should develop a social insurance program for LTSS that provides some level of LTSS benefits to protect individuals and their families against the potential risk of incurring high out of pocket costs for LTSS. Obtaining needed services should be affordable for people with moderate and higher incomes, and a safety net should be available for those who cannot afford services. It should also provide a solid foundation on which private insurance products can supplement the public program. There should be greater incentives for individuals to save and mechanisms by which individuals and their families can contribute toward their future LTSS needs.
Prioritize person- and family-centered care in the design and delivery of LTSS—services and supports should be delivered from the perspective of the individuals receiving care and, when appropriate and necessary, their families. Both consumers and families need easy access to conflict-free information and assistance in navigating the delivery system. Family caregivers need meaningful support and assistance so they are not unreasonably burdened and can continue to provide care. Family caregivers should be included as part of the health and LTSS care team when the person needing care and the family caregiver desire this involvement.
Maintain consumer choice—consumers have the right to decide on and direct the LTSS they receive, how and where those services are delivered, and who provides them. Services should address the full range of medical, LTSS, mental health, and substance abuse needs; be responsive to the values and preferences of the individual; and be provided in the least restrictive setting.
Guarantee access to an array of LTSS, regardless of age or income—financial and functional eligibility for LTSS should be determined in a timely manner, based on a person’s physical and cognitive or other mental functioning and on the types of assistance the person needs.
Ensure the delivery of high-quality LTSS—quality of life is as important as quality of care in all settings, whether in a person’s own home, other residential setting, or in a nursing facility. Quality measures that capture consumer and family experience, vigorous enforcement of laws protecting the health and safety of consumers, effective care coordination with other medical and social services, and adequate provider reimbursement and worker compensation all help support this goal.
Secure protection of LTSS consumers’ rights—consumers should have the right to appeal LTSS coverage decisions and receive timely information concerning care, to meet with advocates, to express grievances without fear of reprisal including through the courts, and the right to privacy in their accommodations, communications, and visitations.