Recently, in response to a new initiative of the federal government for improving long-term services and support (LTSS), Dr. Stephen Kaye at the Institute for Health & Aging at University of California, San Francisco addressed the policy landscape in the United States surrounding issues facing individuals in need of such resources. This included a discussion of access to public long-term care and services, public support provided for consumer choice, and public programs that deal with transitions from institutional to community-dwelling living or diversion from institutionalization. His overview reveals a landscape of long-term services and support that differs significantly from state to state, and highlights initiatives taken by some states to meet the goals for long-term care and services outlined by the Commission on Long-Term Care, AARP, and other organizations. While this article also addresses caregivers, aging services workers, and the measurement of outcomes, this summary will focus areas most pertinent to the experience of the care recipient.
This article begins by noting the how drastically LTSS eligibility, services, and policies vary from state to state, especially with regard to home- and community-based services. These home- and community-based services (HCBS) are offered as optional components of each state’s Medicaid program; some states narrowly restrict eligibility for such programs, or provide limited capacity and benefit levels—with the consequence of forcing individuals into institutional settings when they lack sufficient help or funds. Also noted was that the HCBS provided are often fragmented due to multiple narrowly targeted programs. This leads to generous services being offered to some, while others at a similar level of need may receive little or no services. Dr. Kaye also notes the “institutional bias” of Medicaid categorizing HCBS as optional, while institutional LTSS are mandatory.
However, in 2013 the US Department of Health and Human Services assembled the Community Living Council in order to develop and implement a strategy for providing community care for individuals needing LTSS. This strategy also included the following goals: providing HCBS in integrated settings, and emphasizing participant direction, consumer choice, care coordination, and person-centered services.
The article presents an overview of policy issues related to such efforts and an overview of existing state programs that address these goals. One positive initiative that some states have taken is the provision of a single point of entry approach (also referred to as “No Wrong Door”) which offers counseling about the range of options available to consumers and those acting on their behalf. One provision of the Affordable Care Act is that states are required to adopt a single-point-of-entry approach. In some states, there has also been a consolidation of LTSS systems in order to make them easier to navigate. Vermont, for example, has a global waiver program that consolidates institutional services and HCBS under the same umbrella, offering each type of service on equal footing. Global budgeting of institutional services and HCBS is also highlighted as a way of removing the roadblocks to seamless transitions from institutional to HCBS care that result from these being in separate budgetary allocations.
As of 2010, 44 states had some provisions for consumer direction as part their HCBS. These consumer-directed options take a number of forms. In 36 states, this includes allowing consumer direction for services received from an independent (non-agency) provider. Twenty states also permit the employment of family members for providing care if that is the care recipient’s preference, although only four states permit the payment of spouses or legal guardians. Nineteen states provide publicly funded registries to help consumers find workers to meet their LTSS requirements. Other states provide fiscal intermediary or financial management services to assist with the burden for many care recipients of being an employer for their paid care providers. Other states provide consumer training in hiring, supervising, and firing HCBS workers, as well as training in payroll and recordkeeping. Lastly, a few small-scale programs are aimed at ensuring the availability of backup help in instances when a scheduled worker does not arrive, in order to support consumers who choose independent providers.
Dr. Kaye’s article also covers transition from an institutional to community setting. At the outset, he notes that the overall transition rate from institution to the community was quite low, likely reflecting the difficulty of losing housing and support systems as well as independent living skills. However, he does point out a few innovative programs that could aid with this transition. First were efforts at early intervention that aimed to offer transitional supports to nursing home residents early in their stays. For example, the Minnesota Return to Community program has a target of residents’ institutional stays lasting 60 to 90 days, and provides care coordination following discharge in order to facilitate successful transition back to the community. Other states provide transitional assistance services or community transition services, and some states require that health plans include such services as part of their LTSS system. Lastly, the article mentions additional peer mentoring and support programs, which can provide mentors who serve as models for a successful return to a community from an institutional setting. Lastly, some states provide programs that aim to divert individuals from institutional settings by providing rapid assessments of needs and rapid provision of services in order to avoid unnecessary institutionalization.
Although there is considerable diversity in the offerings of HCBS in particular across different states, the successful programs and initiatives reviewed above can provide models for how policy initiatives can be crafted to meet the goals for LTSS set forth by the Commission on Long-Term Care, AARP, and other organizations. Reviews such as this can aid in the process of strengthening LTSS in the United States by providing examples of initiatives that could potentially be emulated and implemented more broadly within the policy realm.
Kaye HS. Toward a model long-term services and supports system: state policy elements. The Gerontologist (2014); 54(5): 754–761.