Raising Expectations

Conclusion

The Scorecard finds wide variation across all dimensions of state LTSS system performance. Part of this variation is attributable to the fact that the United States does not have a single unified approach to the provision of LTSS. The primary public program that funds LTSS is Medicaid: a federal-state partnership that gives states substantial flexibility to determine who is eligible for LTSS, how LTSS are accessed, what services will be provided, what the payment rates will be, and where services will be delivered. This flexibility provides opportunities to learn from creative approaches to delivering services yet results in disparities in the support available to frail older people and low-income people with disabilities. But there is also a need to learn from successful states so that the health and independence of people who need LTSS are not at risk because of their state of residence.

The Affordable Care Act offers states promising new incentives for improving their LTSS systems, and the lowest performing states have the most to gain by taking advantage of these new provisions. Reforms offer the opportunity to raise the bar for all states, particularly states that are lagging behind, to achieve the vision stated in legal and public policy goals. The Supreme Court in the 1999 Olmstead decision affirmed the right of people with disabilities to live in the least restrictive environment appropriate to their needs.⁵ States that provide limited HCBS options through their Medicaid programs, do not provide sufficient information about or facilitate access to HCBS options, do not offer enhanced support to family caregivers, or do not effectively use home care workers to perform health maintenance tasks can learn from leading states that doing so can be cost-effective as well as responsive to the needs and preferences of older adults and people with disabilities.

Geography should not determine whether people who need LTSS have a range of choices for affordable, high-quality services. All Americans should share a unified vision that supports the ability of older people to have choices, and to be able to age in their own homes with dignity and the support they need to maximize their independence. The lives of people with disabilities should be integrated into the community, where they can maintain social connections, engage productively through employment or other meaningful activities, and contribute to the rich diversity of American life.

Building an improved system is possible and must begin now: the successes achieved by leading states have already shown the way. It is time to raise expectations for LTSS performance. We must move to become a nation in which older people and those with disabilities are given meaningful choices, have access to affordable, coordinated services, a high quality of life and care, and support for their family caregivers regardless of the state they live in.

¹   Susan C. Reinhard, Enid Kassner, and Ari Houser, "How The Affordable Care Act Can Help Move States Toward A High-Performing System Of Long-Term Services And Supports" Health Affairs 30, no. 3 (March 2011): 447–53.

² AARP Public Policy Institute calculation based on 2009 National Health Interview Survey and 2004 National Nursing Home Survey.

³ Pamela Doty, Judy Kasper, and Simi Litvak, "Consumer-Directed Models of Personal Care: Lessons from Medicaid," The Milbank Quarterly 74, no. 3 (1996): 377–409.

⁴ Susan C. Reinhard, "A Case for Nurse Delegation Explores a New Frontier in Consumer-Directed Patient Care," Generations 34, no. 4 (Winter 2010): 75–81.

⁵ OLMSTEAD V. L. C. (98-536) 527 U.S. 581 (1999), 138 F.3d 893.