The Assisted Living Workgroup: one year later.

It was a report-writing project of a scope seldom seen in Washington's healthcare policymaking: 37 national organizations coming together to discuss, debate, write recommendations, even register dissent on a host of major issues involving assisted living. At the behest of the U.S. Senate Special Committee on Aging, the group assembled in the fall of 2001 and spent the next year and a half in a series of discussions and voting exercises to compile its report. When all was said and done, the Assisted Living Workgroup (ALW) had approved 110 recommendations and voted down 21.

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What was unusual about this report was that the group had recorded members' votes on every issue and had published both supporting and dissenting commentaries. Readers of the report would be exposed to in-depth analyses and a wide variety of opinions on such key assisted living issues as consumer disclosure, administrator qualifications, staffing and staff training, and accountability/oversight--even the definition of assisted living itself. (For a review of all this, visit www.alworkgroup.org.) Also interesting, and perhaps inevitable for a group of this size and scope, members eventually broke down into three distinct voting blocs: the consumer-driven free-market advocates (the Assisted Living Federation of America and the National Association for Home Care & Hospice), the regulatory hard-liners (ten organizations representing consumers, state surveyors, ombudsmen, and--interestingly enough--certified nursing assistants), and the majority of 23 middle-of-the-road "common-grounders" (i.e., most of the major long-term provider groups, including AHCA's National Center for Assisted Living).

The ALW presented its report to the committee in April 2003, received the committee's thanks, and disbanded, presumably forever. What had the ALW accomplished? It's a fair question for a one-year-after assessment. Recently, Nursing Homes/Long Term Care Management asked some of the key provider "players" in the ALW and one prominent nonparticipating observer for their reflections on this unique (for long-term care) exercise.

Janet Forlini, Senior Vice-President/Director of Public Policy, Assisted Living Federation of America (ALFA): I was a staff person for the U.S. Senate Special Committee on Aging during the ALW's deliberations, so part of my perspective is shaped by that experience. I think the biggest achievement of the ALW was that it brought together organizations, many of which had never been in the same room before. From an "inside the beltway" perspective, it is always significant when you can bring various stakeholders to the same table. And the amount of time these individuals and organizations gave to the effort was quite astounding.

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As for frustrations, I think the project was made difficult and the final report lengthy because there were so many sub-issues to cover. Yet it was important that all the issues, in fact, be covered. There was no easy way to place more emphasis on some issues (of which quite a few were core issues), and less on others. All in all, though, this all-inclusive process and end product were very important contributions to the dialogue on assisted living public policy.

Now, one year later, I know that the Special Committee on Aging remains interested in moving forward on assisted living policy. For example, per the request of three members of the committee, the General Accounting Office (GAO) is currently pursuing a study on three important assisted living issues: disclosure, state licensing assistance to providers, and consumer grievance procedures. It is important to note, however, that the thrust of the GAO study is to look at state models, rather than at a potential federal approach to regulation, and it still remains the consensus in Congress that this is the way to go.

What we are hearing from the states reflecting the ALW's work really varies. Some states have developed smaller versions of the ALW, putting together roundtable discussions involving diverse interests reviewing potential regulatory issues. Some states are focused on some pretty specific issues, such as disclosure, and might have already moved beyond the discussions of the ALW. Each state is quite different from the others, depending on a confluence of factors singular to each regulatory environment and available care models.

One of the ALW's recom mendations was the development of a Center for Excellence in Assisted Living (CEAL). Several organizations representing providers, consumers, and professionals are already moving forward on creating this center and continuing the dialogue about the best ways to promote it. I think many groups have come to the realization that our biggest strides in public policy will come as a result of partnerships and coalition building among the various stakeholders in assisted living, for which the ALW was quite possibly the prototype.

Douglas Pace, Director of Assisted Living and Continuing Care, American Association of Homes and Services for the Aging (AAHSA): Having a group of this makeup come together and report on 131 recommendations and gain consensus on 110 was quite an achievement. We thought that, to make this report useful and complete, we should allow opportunity for the organizations to add supplemental, opposing, or elaborating comments, to give readers a full range of thinking on all the issues. I think the Special Committee on Aging welcomed this approach and agreed that the report would be helpful to the states reviewing regulatory oversight. Any time you get a group together to negotiate--especially one this large--there will be occasional frustrations, but it was exhilarating, too, and fruitful. The process worked very well for the ALW until we got to the definition of assisted living. We actually had to use a different process for this, in which we divided the definition into three parts and had the groups vote on each. The members differed considerably on which part or combination of parts each would be willing to accept.

The vast majority of groups involved were in the middle, which is why we were able to obtain the degree of consensus we did. Some provider groups and consumer groups were at each end of the spectrum but, all in all, we were able to produce helpful recommendations on such key issues as disclosure, assessment, and medication management, and do so in a way to provide regulatory guidelines rather than prescriptions. So, I think ALW fulfilled its mandate, and now it is up to the states.

Most of the ALW members are encouraging the states to replicate our process by using a broad-based group to review the state regulatory process and make recommendations.

David Kyllo, Executive Director, National Center for Assisted Living (NCAL): In my 20 years in Washington, I've never seen so many groups come together with no funding and produce so many recommendations at the request of Congress in so short a time. It is a strong sign from national organizations representing consumers, providers, regulators, and healthcare professionals that they want to see assisted living succeed. I also think Congress was impressed by the scope of the effort and, after reviewing it, maintains a general consensus that regulation of assisted living should remain at the state level. I believe there is a general sense in Washington and in the states that the nursing home model of regulation should not be replicated. The process has been frustrating for providers, consumers, and regulators alike.

The ALW report has enabled us to assist our 37 state affiliates with recommended approaches to various issues and to offer them a spectrum of views they might encounter during their own deliberations.

NCAL is also supportive of the next phase of collaboration following the ALW, which is the organization of CEAL. CEAL will be at the forefront of promoting quality in assisted living with better information tools for all participants. While CEAL has not as yet officially opened its doors, plans are under way to hold a national conference on assisted living quality in December. I believe CEAL represents an important next step for assisted living that will help these communities thrive during rapid societal and market changes and technologic progress.

Jim Moore, President, Moore Diversified Services, Inc. (assisted living consultant): Although I was not directly involved in the ALW initiative, I would like to urge those who evaluate its work to strike a balance. The ALW initiative, as I understand it, was heavily weighted with consumer groups, which is certainly appropriate. But we must remember that seniors and their families opting for assisted living are exercising consumer choice. However, along with this choice, and the possibly enhanced lifestyle and quality of life it offers, comes the possibility of increased risk. We need to strike a balance between encouraging choice and managing risk, while being wary of creating inadvertently excessive regulation in an attempt to eliminate risk. Sometimes the professional associations and owner/operators push too far in one direction and well-intended consumer groups push too far in the other. The real world and the best interests of consumers and their families lie at the crux of this delicate balance. In general, though, the exercise of consumer choice is of paramount value, and to preserve this, consumers choosing assisted living will need to understand that it does not always operate in a perfect world.

The flexibility, ambience, and relatively independent lifestyle offered by assisted living must be balanced with the appropriate standards of care needed to protect them--and this should be recognized by all responsible parties following in the ALW's footsteps as the central theme and focus of their efforts.

For further information from the participants, e-mail [e-mail], [e-mail], [e-mail], and [e-mail]. For more information on the Assisted Living Workgroup and its report, visit www.alworkgroup.org.

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BY RICHARD L. PECK, EDITOR-IN-CHIEF