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Introduction¹

Living independently and participating in one’s community are priorities for many people. In many regions across the United States, there are programs that support and enable people with disabilities and older adults to live where they choose and with whom they choose and to participate fully in their communities. Tremendous progress has been made. However, in many cases, the programs themselves—and access to them—vary not only between states but also within states. Many programs are small, and even when they prove to be successful they are still not scaled up to meet the needs of the many people who would benefit from them. The challenges can include insufficient workforce, insufficient funding, and lack of evidence demonstrating effectiveness or value.

To get a better understanding of the policies needed to maximize independence and support community living² and of the research needed to support implementation of those policies, the Institute of Medicine and the Division of Behavioral and Social Sciences and Education of the National Academies of Sciences, Engineering, and Medicine (the Acad-

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¹ The planning committee’s role was limited to planning the workshop, and the workshop summary has been prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not necessarily endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.

² For the purposes of this workshop summary, “community living” referred to living at home, as opposed to a residential facility, unless stated otherwise in the text.

emies), with support from a group of sponsors (see page ii for a list), convened a public workshop on October 6, 2015, in Washington, DC. The workshop was hosted by the Academies’ Forum on Aging, Disability, and Independence³ (the forum), an ongoing neutral convening activity with stakeholder members from the federal government, industry, academia, and nonprofit organizations. The forum meets to discuss how to support independence and community living for people with disabilities and older adults. The forum is particularly interested in four focal areas that are key to supporting community living and enabling individuals to maximize their independence: home and community settings, services and supports, workforce, and financing. The forum also explores how technology, policy, research, and quality can affect these four focal areas (see Figure 1-1).

The workshop was planned by an ad hoc committee (see Box 1-1 for

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³ See www.nas.edu/ADIForum (accessed January 1, 2016).

the committee’s statement of task) and designed to meet the following objectives:

• Identify how to improve care coordination and facilitate community integration
• Examine innovative models for integration of service delivery and financing
• Identify and discuss policies that catalyze innovation
• Explore research and policy gaps and needs

Under Academies guidelines, workshops are designed as convening activities and do not result in any formal findings, conclusions, or recommendations. Furthermore, the workshop summary reflects what transpired at the workshop and does not present any consensus views of either the planning committee or workshop participants. The purpose of this summary is to capture important points raised by the individual speakers and workshop participants. Speaker presentation slides are also available.⁴

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⁴ See http://www.nationalacademies.org/hmd/Activities/Aging/AgingDisabilityForum2015-OCT-06.aspx (accessed March 25, 2016).

After two context-setting keynote presentations, the workshop featured four panels of presentations designed to meet the above objectives. Each panel comprised three or four presentations followed by a short question and answer session and a 15-minute facilitated discussion among small groups of workshop participants which aimed to address the following three questions:

• What are the two to three biggest policy barriers with respect to the topic of that particular panel?
• What should be the top three research and policy priorities in that panel topic area?
• What best practices have been identified?

A rapporteur at each table then presented the results of those discussions to the workshop audience at large.

OPENING REMARKS

Workshop planning committee co-chairs Terry Fulmer of The John A. Hartford Foundation and Fernando Torres-Gil of the University of California, Los Angeles, welcomed the workshop participants. Fulmer began by saying that “all of us are passionate about a world where independence and community living [are] the norm, not the exception.” She noted that the workshop agenda was intentionally broad and ambitious so as to generate an array of ideas to consider for the future and to add ways to help keep people with disabilities and older adults independent.

Torres-Gil added that moving forward on the issues of independence and community living is an important quest—a “quest” because many have been working on these issues for a long time. “All of us want to see forward progress on these issues,” he said, “and our ultimate goal is to hopefully create a world where we have the programs, resources, [and] services . . . that will enable all of us, regardless of our age, our physical, emotional, cognitive condition, regardless of our socioeconomic circumstances, that will enable us to have those options and choices and the ability to select how we want to age with a [high] quality of life, irrespective of a potential disability.”

ORGANIZATION OF THE SUMMARY

The workshop (see Appendix A for the agenda) was organized by an independent planning committee in accordance with the procedures of the Academies. This publication describes the presentations given and the discussions that occurred throughout the workshop. Generally, each

speaker’s presentation is reported in a section attributed to that individual. Chapter 2 recaps the two keynote presentations that provided a backdrop for the rest of the workshop’s discussions. Chapter 3 examines the services and supports needed to support community living, while Chapter 4 considers the workforce needed, and Chapter 5 discusses financial considerations for supporting individuals living in the community. Chapter 6 describes some of the ways in which technology can enable independence, and Chapter 7 provides a brief summary of the workshop’s key points and closing remarks.

In accordance with the policies of the Academies, the workshop did not attempt to establish any conclusions or recommendations about needs and future directions, focusing instead on issues identified by the speakers and workshop participants. In addition, the organizing committee’s role was limited to planning the workshop. The workshop summary has been prepared by workshop rapporteurs Joe Alper and Sarah Domnitz as a factual summary of what occurred at the workshop.

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