S. HRG. 108–85

ASSISTED LIVING:

EXAMINING THE ASSISTED LIVING WORKGROUP

FINAL REPORT

HEARING

BEFORE THE

SPECIAL COMMITTEE ON AGING 

UNITED STATES SENATE

ONE HUNDRED EIGHTH CONGRESS

FIRST SESSION

WASHINGTON, DC

APRIL 29, 2003

Serial No. 108–8

(

Printed for the use of the Special Committee on Aging 

ASSISTED LIVING: EXAMINING THE ASSISTED LIVING WORKGROUP FINAL REPORT 

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88–255 PDF 2003

S. HRG. 108–85

ASSISTED LIVING:

EXAMINING THE ASSISTED LIVING WORKGROUP

FINAL REPORT

HEARING

BEFORE THE

SPECIAL COMMITTEE ON AGING 

UNITED STATES SENATE

ONE HUNDRED EIGHTH CONGRESS

FIRST SESSION

WASHINGTON, DC

APRIL 29, 2003

Serial No. 108–8

Printed for the use of the Special Committee on Aging

(

SPECIAL COMMITTEE ON AGING 

LARRY CRAIG, Idaho, Chairman 

RICHARD SHELBY, Alabama 

SUSAN COLLINS, Maine 

MIKE ENZI, Wyoming 

GORDON SMITH, Oregon 

JAMES M. TALENT, Missouri 

PETER G. FITZGERALD, Illinois 

ORRIN G. HATCH, Utah 

ELIZABETH DOLE, North Carolina 

TED STEVENS, Alaska 

RICK SANTORUM, Pennsylvania 

JOHN B. BREAUX, Louisiana, Ranking 

Member 

HARRY REID, Nevada 

HERB KOHL, Wisconsin 

JAMES M. JEFFORDS, Vermont 

RUSSELL D. FEINGOLD, Wisconsin 

RON WYDEN, Oregon 

BLANCHE L. LINCOLN, Arkansas 

EVAN BAYH, Indiana 

THOMAS R. CARPER, Delaware 

DEBBIE STABENOW, Michigan 

LUPE WISSEL, Staff Director 

MICHELLE EASTON, Ranking Member Staff Director 

(II) 

C O N T E N T S 

Page 

Opening Statement of Senator Larry E. Craig ..................................................... 1

Opening Statement of Senator John Breaux ......................................................... 2

Statement of Senator Ron Wyden .......................................................................... 12

PANEL OF WITNESSES

Stephen McConnell, Vice President for Advocacy and Public Policy, Alzheimer’s Association, Washington, DC ............................................................... 4

Dan B. Madsen, President and Chief Executive Officer, Leisure Care, Inc., 

Bellevue, WA, on behalf of the American Seniors Housing Association .......... 13

Robert L. Mollica, Senior Program Director, National Academy for State 

Health Policy, Portland, ME ............................................................................... 26

APPENDIX 

Statement submitted on behalf of the AARP ........................................................ 49

Statement from the American Association of Homes and Services for the 

Aging ..................................................................................................................... 53

Letter and additional material submitted by the National Senior Citizens 

Law Center ........................................................................................................... 58

Statement of Bill Southerland, President, Idaho Assisted Living Association ... 74

Statement of Tom Grape, Chairman Assisted Living Federation of America .... 77

Additional Material submitted on behalf of the Assisted Living Workgroup ..... 109

(III) 

(1)

ASSISTED LIVING: EXAMINING THE ASSISTED 

LIVING WORKGROUP FINAL REPORT 

TUESDAY, APRIL 29, 2003 

U.S. SENATE, SPECIAL COMMITTEE ON AGING, Washington, DC. 

The committee convened, pursuant to notice, at 10:02 a.m., in 

room SD–628, Dirksen Senate Office Building, Hon. Larry Craig 

(chairman of the committee) presiding. 

Present: Senators Craig, Breaux, and Wyden. 

OPENING STATEMENT OF SENATOR LARRY CRAIG, CHAIRMAN 

The CHAIRMAN. Good morning, everyone. Let me convene the 

Senate Special Committee on Aging. Thank you for attending this 

hearing this morning. 

Two years ago, this committee held a hearing to gain a better understanding of the emerging industry of assisted living. We learned 

that there are over 30,000 assisted living facilities nationwide, 

housing nearly one million people, and that such facilities are not 

regulated at the Federal level. Instead, individual States are 

responsible for oversight and are free to govern without Federal 

mandates. 

However, we have seen a great disparity of care given by assisted 

living facilities around the country. These facilities in some States 

are exemplary in providing appropriate quality care for their residents, while in other States, such facilities are clearly handling 

more than they are probably capable of doing. 

Because of the need for uniform guidance in rendering 

appropriate and competent care, the Special Committee on Aging 

charged consumers and industry groups within the assisted living 

community to come together and develop recommendations designed to provide uniform models of best practices to ensure more 

consistent quality in assisted living facilities nationwide and to 

provide consumers with sufficient and useful information. 

In the fall of 2001, the Assisted Living Workgroup, known as 

ALW, was formed with nearly 50 member organizations representing providers, consumers, long-term care professionals, regulators, and accrediting bodies. Our primary directive for this group 

was to be inclusive and our expectation was that model rules for 

assisted living care would be achieved. We have discovered difficulty. 

The committee recognizes that a great deal of time and monumental effort went into the final product. We appreciate that each 

recommendation was clearly put through a thoughtful, thorough 

2

process with the welcoming of divergent views. We commend the 

ALW on its effort to provide a comprehensive list of recommendations for assisted living facilities. We also appreciate the effort to 

bring about consensus and hope this product will be helpful to consumers and the industry alike. 

Having said that, I feel much more needs to be done. This report 

does not present a uniform set of model rules and regulations for 

the rendering of health care services in the assisted living context. 

However, it demonstrates the diversity of opinion and what needs 

to be done. Accordingly, it is a most important and valuable step 

in the further study of this important quest for uniform guidance. 

Today, we plan to examine the Assisted Living Workgroup final 

report and focus on the process in which the report was developed, 

the benefits and the shortfalls of the report, and how the report 

can best be used in the future. We will be hearing from industry 

and consumer groups that were involved within the ALW. 

Our first witness is Stephen McConnell, a Vice President of 

Advocacy and Public Policy with the Alzheimer’s Association. 

Our next witness is Dan Madsen, President and CEO of Leisure 

Care, Inc., a member of the American Seniors Housing Association. 

Both of these witnesses are members of ALW and were involved in 

developing the report. 

We will also hear from an outside expert observer who was not 

involved in the ALW. We hope he can provide us with an objective 

opinion of the report. Bob Mollica is a Senior Program Director for 

the National Academy for State Health Policy. 

Before I turn to our witnesses, let me turn to my colleague, the 

ranking member here on the committee, Senator John Breaux of 

Louisiana. John. 

OPENING STATEMENT OF SENATOR JOHN BREAUX 

Senator BREAUX. Thank you very much, Mr. Chairman. Welcome 

back. We have a great deal to do and we are delighted to have this 

hearing today. 

It was back in August 1999, as you stated, that the Aging Committee asked the assisted living community to do something that 

had never been asked for before in the area of health care, and that 

is to come up with recommendations themselves as to how quality 

health care can be guaranteed in the assisted living area. 

What they have come up with, indeed, is a lot more than many 

of us actually expected. It is over 380 pages of really substantive 

recommendations and discussions about how the entire area of 

health care and our assisted living facilities are going to be managed and handled. Indeed, I think that the given length and the 

substance and the time that went into this report all of the people 

who have been involved in this process are to be commended. They 

did a terrific job. 

We were not necessarily, when we made the request, seeking 

some type of a unanimous recommendation, knowing that that was 

not going to be possible the way it was structured, but to try and 

come up with something that could pass at least a two-thirds recommendation, and that is what we have today. There is a lot of 

substance in this report. Each one of the votes that were taken 

3

really were taken with a sense of trying to find out the best recommendation that could possibly be put together. 

I said this was a unique and a new way of doing business. Most 

times, the Federal Government just says, all right, here are the 

regulations, go follow them, and we dictate from Washington. As a 

result, in some programs like Medicare, we have 133,000 pages of 

rules and recommendations, three times more than the Internal 

Revenue Code. 

This was unique in the sense that we said, ‘‘All right, we want 

the people who are involved in running the facilities to sit down 

with those people who utilize the facilities,’’ and we involved different organizations and groups that represent the various interests of assisted living facilities. So for the first time, we actually 

have those who own and run the facilities talking with those who 

utilize the facilities. I think this process was very, very unique. It 

was different from what we had done in the past, and hopefully 

this could be sort of an imprimatur type of process for how we 

ought to consider doing things in the future when we bring various 

groups together to create health care policy. 

As the chairman has pointed out, the regulations dealing with 

assisted living facilities are almost entirely State regulations. 

There are huge differences in the type of rules and regulations. It 

is hard to know what the rules are until you get out a geography 

map and figure out what they are. That is obviously not the right 

way to set up rules and standards, by a geography book, but rather 

by what is best for the people who utilize the services. 

In my own State of Louisiana, I think the type of recommendations developed by the ALW could be helpful and important towards developing some type of basic rules and regulations on a 

State level. 

There are a few organizations, I think, that need to be mentioned. There were some 13 organizations who acted as the steering 

committee and they are to be thanked for their time and their 

effort and their commitment. This was not an easy task. If it had 

been easy, we would not have had to do it. 

The Consumer Consortium on Assisted Living and the American 

Association of Homes and Services, deserve a nod for their work as 

co-chairs of the working group and the latter group for hosting the 

meetings and coordinating the workgroup website which is now in 

place. 

Additionally, the National Center for Assisted Living provided 

the resources, which we thank them for, for the creation of this 

written product. Indeed, a thank you to everyone who served on 

the panels. 

This is not the end of the process. I think it is rather the beginning of the process. But now we have some documents that have 

substance behind them. They have clarity and they have support 

from both the users and the providers, which I think is what is so 

unique. This is not a dictate from Washington but rather a recommendation from the people who are truly to be affected by what 

happens. So we thank them very much for their performance. It 

was a job very well done. Thank you. 

The CHAIRMAN. John, thank you for that comprehensive statement. As both Senator Breaux and I know, the difference between 

4

a rural community in Louisiana and Idaho, where there may be a 

facility that houses four, or five, or six, versus a large urban setting 

are a world apart often. While we believe that consistent and highquality care needs to be delivered in both settings, at the same 

time, we recognize clearly the difference. 

With the witnesses we have today and the work that our staff 

will do in reviewing this, I have already contemplated with my 

staff the possibility, Senator, of doing a white paper to put on top 

of this for the public and for the professional provider community 

as a whole to consume in an effort at the State levels, I would 

hope, to continue to work to build this kind of consistency, and I 

thank you for recognizing those who were largely responsible for 

keeping the group together and causing it to function. 

So now if we would ask our witnesses to come forward, I want 

to thank them again for their time this morning. Stephen 

McConnell, Vice President for Advocacy and Public Policy, Alzheimer’s Association of Washington, DC. Stephen, we will let you 

start. Thank you, Stephen. 

STATEMENT OF STEPHEN MCCONNELL, VICE PRESIDENT FOR 

ADVOCACY AND PUBLIC POLICY, ALZHEIMER’S ASSOCIATION, WASHINGTON, DC 

Mr. MCCONNELL. Mr. Chairman, Senator Breaux, thank you for 

inviting the Alzheimer’s Association to testify this morning. Thank 

you especially for shining a light on this very important issue. 

I am humbled by the invitation and hope I don’t humiliate myself here today. There are many knowledgeable people, as both of 

you have pointed out, that have been involved in this process. 

Many of them are in the room behind me, and it is important that 

we acknowledge them, as you have. 

Perhaps we are testifying because the majority of people within 

assisted living facilities have some form of dementia. Perhaps we 

are testifying because we were among the more moderate views in 

the group. Perhaps we are testifying because our organization’s 

name begins with the first letter of the alphabet. [Laughter.] 

But nonetheless, we are very pleased to be here. 

We are not any more right on this issue than any of the other 

stakeholders that were involved in the process and that is perhaps 

the essence of the success and the failures of this undertaking. 

I would like to make four points. First, to ask a question, did the 

process succeed? More specifically, did it create a single definition? 

No. Did it achieve consensus on all the recommendations? No. Did 

it develop an exact blueprint for the States and the Federal Government? No. Did it answer all the right questions? No. But was 

it an honest process? Was it a good faith effort by all the organizations involved? That is an unqualified yes. Does it produce useful 

recommendations that address many of the key issues? It does. Is 

it a good resource document to guide States and the Federal Government as they move forward? Yes. Will it inch us forward toward 

better care? We believe it will. 

In some ways, this document is a bit like Los Angeles. If you try 

to relate to it as a whole, it is impossible, full of contradictions. But 

if you connect to the individual communities, the individual recommendations, there is a lot there and it makes much more sense. 

5

Perhaps this document is the best that could be achieved given 

that there wasn’t a specific legislative outcome tied to it. All the 

groups needed to put forward their best thinking, as they did. 

Many of the groups helped to improve recommendations to the very 

end, even though in the end, they might have voted against one or 

more of these recommendations. But in the end, legislators must 

make the tough decisions, make the call. Making the final call was 

very difficult for a group process like this. 

The second major point is that there are differences among the 

groups as a result of different experiences and data, not unlike 

what you just pointed out, Mr. Chairman, about the differences between facilities in Idaho and California. There are differences in 

philosophies about how to approach care and there are different 

views about solutions. 

Our philosophy in this process followed six basic principles: (1) 

that care is a partnership between the resident and the provider; 

(2) that assisted living residents are diverse and a single set of prescribed services won’t work; (3) preferences of individuals are important and flexibility is essential; (4) dignity, independence, and 

choice are important and assisted living should ensure these; (5) 

essentials must be provided and States should mandate these, for 

example, basic safety. Finally, even small steps forward are better 

than holding out for the perfect. 

The third major point I would like to make is that the process 

and the final product would improve care for people with dementia, 

which by some estimates could be as many as 40 to 60 percent of 

the people in assisted living. 

I would draw your attention to just a couple of the things that 

are included in this report related to dementia. First, is that all 

staff have to be trained to recognize the signs and symptoms of dementia. This is pretty basic, but that awareness is not the case in 

many assisted living facilities, many hospitals, or many other settings where people with dementia reside. Second, the care plans 

must be adapted for residents with dementia to account for their 

cognitive impairments. Third, the direct care staff should receive 

training about dementia. Fourth, individualized activities should 

match the residents’ abilities and interests. Finally, the residents 

should be protected from danger, especially unsafe wandering. 

Did we get all we wanted? No. We wanted specific numbers of 

hours for training and a variety of other things. But the key is that 

the dementia provisions would apply to all facilities, not just those 

that say they provide special care for people with dementia. This 

is a very important step forward. According to a University of 

North Carolina study in 1997 and 1998, 68 to 89 percent of people 

with dementia in assisted living are not in special care units. So 

it is important that we ensure good care for people with dementia 

even though the facility doesn’t hold itself out as providing special 

care. That is perhaps one of the most important recommendations 

in this report. 

The fourth and final point is that the key focus of the debate is 

really at the State level. Most States are examining or reexamining 

this issue. The key stakeholders, including the Alzheimer’s Association and all the groups involved, need to get involved in the State 

legislative and regulatory process. The Alzheimer’s Association will 

6

distribute this report to our advocates at the State level and work 

with them to ensure that as many of these recommendations as 

possible are implemented. 

Finally, I would encourage the Federal Government to play an 

ongoing oversight role, to continue to fund research so we understand outcomes better and we don’t have to have as many regulations that are based on process, but more on the outcomes we are 

seeking. Finally, to help ensure access to assisted living for people 

who can’t now afford it. 

I don’t want to trivialize this process, Mr. Chairman, but I think 

of it as a bit like Goldilocks and the Three Bears. The porridge was 

too hot or too cold, and even when it was just right, after all, it 

was only porridge, and in the end, Goldilocks was damn lucky to 

get out of there alive, but——[Laughter.] 

I think that is the way I will hope for it today. [Laughter.] 

Thank you again for shining a light on this very important issue. 

We look forward to working with you in the future. 

The CHAIRMAN. Stephen, I find it ironic that there are three 

people sitting up here at the dais at this moment. I don’t know 

whether we are black bears, brown bears, or grizzlies. [Laughter.] 

We are not Goldilocks, probably. [Laughter.] 

[The prepared statement of Mr. McConnell follows:]

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The CHAIRMAN. Dan, before I turn to you, let me turn to my colleague from Oregon who has joined us, Senator Ron Wyden, who 

has spent both his private and his public career working on behalf 

of our elderly and who comes from a State with probably a very 

clear set of regulations as it relates to assisted living. 

OPENING STATEMENT OF SENATOR RON WYDEN 

Senator WYDEN. Thank you, Mr. Chairman. I will be brief, and 

I am pro-Goldilocks. [Laughter.] 

The CHAIRMAN. Well, I am not anti-Goldilocks. She was a bit 

naive, that is all. 

Senator WYDEN. We’ll build a bipartisan consensus from there. 

I think that it is important to remember the origins of this whole 

exercise. Then-Chairman Grassley and Senator Breaux and I began 

this effort and commissioned the government auditors to look at 

these issues. A host of discussions began from that report. As we 

said, given the demographic tsunami that is coming, with millions 

of baby boomers retiring in 2010 and 2011, we want to do this job 

right. The real challenge is to learn from the nursing home experience. 

I was Co-Director of the Gray Panthers for about 7 years before 

I was elected to the House and specialized in these issues then. 

When this committee began examining assisted living I think our 

sense was that there were a lot of things you would have done 

differently for nursing home patients if you could go back and look 

at the nursing home experience. So we wanted to hear from that 

experience we thought then that the challenge for assisted living 

issues was to see if we can find common ground between consumer 

groups and industry groups, and clearly, we have made progress in 

a number of areas. Clearly, we still have a fair amount of work to 

do, as well. 

I think the principal concern that I have today is we have got 

a number of States that are doing a good job and we want to ensure that that progress goes forward. Second, we have got to have 

a safety net to ensure that every vulnerable older person in this 

country in every assisted living facility has certain basic protections, because they continue to be some of the most vulnerable people in our society. 

Beyond that, I think the challenge is going to be to get consumer 

groups to say that they are willing to meet the industry halfway 

on some things that are important to them the industry, then has 

to reach out to consumer groups on some of the issues that are still 

in contention, too. 

But we are on our way to putting in place a Federal-State, public 

and private long-term care partnership in this country with assisted living playing a key role. So if you all and the others who 

are involved in this exercise continue to work with this committee 

under Chairman Craig and Senator Breaux, and I am sort of a junior partner on these initiatives, but if you continue to work with 

us as you have in the past, I think we can set in place that kind 

of framework that allows older people in this extraordinarily fastgrowing sector of senior health care to get the protections and the 

services they need while at the same time ensuring that we have 

13

the kinds of facilities and the number of facilities that we are going 

to need giving this demographic explosion which awaits us. 

I thank you, Mr. Chairman, and appreciate the good work of both 

you and Senator Breaux in this. 

The CHAIRMAN. Ron, thank you very much. 

Now, let us turn to Dan Madsen, President and CEO of Leisure 

Care, Inc., from Bellevue, WA, who in another life spent time in 

Idaho. 

Mr. MADSEN. Yes, a lot of my life. 

The CHAIRMAN. For those of you who are here who are wondering 

why you are here, as Stephen had mentioned, my staff said that 

the spectrum of, and I think Senator Breaux mentioned that and 

certainly Ron Wyden understand that, if you were to graph you all, 

it would be a bit of a bell-shaped curve. You fall somewhere in the 

center of the bell, and I mean that reflective of probably the collective interests, but maybe not the extremes of the curve, but we 

think the report because of its process is reflective of that broader 

spectrum. 

Dan, please proceed. 

STATEMENT OF DAN B. MADSEN, PRESIDENT AND CHIEF 

EXECUTIVE OFFICER, LEISURE CARE, INC., BELLEVUE, 

WASHINGTON, ON BEHALF OF THE AMERICAN SENIORS 

HOUSING ASSOCIATION 

Mr. MADSEN. Good morning, Chairman Craig, Senator Breaux, 

and Senator Wyden. As mentioned, my name is Dan Madsen. I am 

the President and Chief Executive Officer of Leisure Care. We are 

located in Bellevue, WA, near Seattle. We operate 33 retirement 

communities in nine Western States. We serve approximately 5,000 

residents and their families. 

I am here today on behalf of the American Seniors Housing Association and representing over 250 companies involving management, ownership, financing, and development of senior services in 

housing. ASHA’s members currently serve over 500,000 seniors nationwide. 

We are proud to have been asked by the committee to participate 

in the Assisted Living Workgroup, the topic we are here to discuss 

today. I am proud to have been selected by ASHA to represent 

them and am very honored to be here today. 

The most positive aspect of ALW has been the opportunity and 

the interaction, as mentioned by everyone, between the organizations, people from all ends of the spectrum. The spirit of consensus 

and coalition building that produced this report will help policymakers at the State level understand what issues are important 

when they examine their current regulatory systems in assisted living. 

ASHA and its members are very committed to improving quality 

in assisted living residences nationwide and believe that ALW’s report will be helpful to consumers, operators, and State policymakers in promoting quality of assisted living. In the end, ASHA 

supports more than 100 of the 127 recommendations included in 

the report. As mentioned previously, did we agree with all the recommendations? Of course not. On rare occasions, ASHA felt that 

certain recommendations would not have had an impact on quality 

14

or would dramatically have altered the way assisted living services 

are provided. 

We also carefully took into account the effect that some recommendations would have on accessibility of assisted living to lowand moderate-income individuals. We also voted against some recommendations because we simply didn’t feel that they were consistent with ASHA’s members’ belief in the vital issues related to 

quality. 

For example, ASHA opposed language requiring assisted living 

operators to offer only private single-occupancy apartments. Many 

of ASHA’s members offer shared room environments for residents, 

and requiring operators to offer only private apartments would significantly limit the accessibility for assisted living in moderate- and 

lower-income individuals. It would undermine consumer choice, as 

well, and affordability, and it has very little impact on quality. 

The Assisted Living Workgroup didn’t operate in a vacuum. 

Since 2001, as Senator Breaux mentioned, 47 of the 50 States and 

the District of Columbia have made significant changes, as our exhibit shows, in the regulation of assisted living. These updates allowed assisted living operators to adapt and innovate while providing meaningful oversight of an industry caring for a population 

whose average resident is over the age of 80. 

The presence of State regulators at the ALW was a significant 

benefit. We hope that as States continue to monitor laws and the 

regulations, they will continue to implement a process that involves 

a wide variety of stakeholders to offer input, like the committee 

has done with the ALW. 

Assisted living residents and their family members are best 

served by State and local-based regulations that can truly meet the 

unique needs of the residents and the culture of the State, and this 

is vitally important because the culture of each State is different. 

Leisure Care operates in nine States, and while the core of what 

is required is very similar in those States, it is the variation of assisted living between States that allows the assisted living to be 

able to best meet the needs of those residents. An example of such 

variation would be the staffing patterns in those States. 

We recently, through our resident opinion surveys, made some 

significant changes in the way we operate on weekends. That was 

well accepted in our area in Los Angeles, scheduling more activities 

on Saturdays and Sundays and beefing up, so to speak, how we operated on those days. At our communities in Idaho Falls, ID, the 

residents came out against some of those initiatives and said we 

would like to see less staff on Sundays and have them home with 

their families where they should be and we would like that day in 

peace, as well. There is a perfect example of how regional preferences may dictate how we operate. 

We urge this committee to examine one item that is not covered 

in the Assisted Living Workgroup report and that was the cost of 

financing needed in long-term care services. Most Americans are 

woefully unprepared financially when they require assistance with 

activities of everyday life. We encourage this committee to continue 

to efforts to educate the American people on this pressing need. 

We are also pleased that President Bush supports similar proposals. In fact, Leisure Care, as a company, offers long-term care 

15

insurance free of charge to all 2,000-plus of its employees. We 

make that accessible to their families, their immediate families, 

and their in-laws, as well. 

ASHA does not view today as an end to the ALW process. We 

will make the ALW report available to every one of our members 

and encourage them to use it when evaluating their own operations. I would venture to say that a great deal of those providers 

are already using the recommendations and putting them in place 

in their operations. Where they can make changes to improve quality, ASHA members should do so with or without regulation because it is the right thing to do. Our best regulators, after all, are 

our residents and our families. 

An example would be the recommendation to require assisted living operators to allow their residents to form resident councils. 

This is a practice that we have done for over 27 years in our company and we strongly encourage residents to be involved in how 

their community operates. The ability of residents to meet independently allows them greater flexibility in the community operations. It definitely improves quality and resident choice and autonomy at the same time. When I go to communities and I have 

to meet with resident councils and I have to meet with groups of 

hundreds of residents, believe me, I am held accountable for the 

quality of services that I provide. 

ASHA will continue to seek collaboration with consumer organizations, such as AARP, the Alzheimer’s Association, and with the 

Consumer Consortium on Assisted Living to help ensure the views 

of consumers and family members are heard by our members and 

that the highest level of quality in assisted living can be achieved 

at every residence. 

The relationships that were built around the Assisted Living 

Workgroup table will not be abandoned or allowed to fade away. As 

I stated earlier, ASHA encourages State regulators to solicit the 

input of assisted living consumers, providers, families, and address 

changes in their current regulations, and use the ALW report as 

an important reference guide, which was originally intended, to 

issues that should be considered in oversight structure of assisted 

living. The ALW provided the blueprint for such collaboration. 

In conclusion, I would like to thank Senators Craig, Breaux, and 

the entire committee for the opportunity not only to speak to you 

today, but for the continued efforts on behalf of America’s seniors. 

Rest assured, ASHA and its members and the committee’s commitment to improving the lives of assisted living residents nationwide. 

Thank you. 

The CHAIRMAN. And thank you very much. 

[The prepared statement of Mr. Madsen follows:]

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The CHAIRMAN. Next, let me introduce once again to the committee Robert Mollica, National Academy for State Health Policy, 

Portland, ME. Robert, welcome to the committee. 

STATEMENT OF ROBERT L. MOLLICA, SENIOR PROGRAM DIRECTOR, NATIONAL ACADEMY FOR STATE HEALTH POLICY, 

PORTLAND, ME 

Mr. MOLLICA. Thank you, Mr. Chairman and members of the 

committee for the opportunity to speak here today. The Special 

Committee on Aging is playing an important role in the future of 

assisted living, raising questions about its definition, direction, 

quality of care, government regulation, and the extent to which the 

interests of consumers and family members are protected. The committee’s interests created the vehicle for stakeholders to discuss 

and debate important issues. 

You extended a challenge to all stakeholders to reach a consensus on a set of standards for policymakers and regulators to 

consider as they develop State policy. The Workgroup has produced 

a valuable report after 18 months of hard work by numerous individuals. The issues are complex, as you have mentioned. Current 

policy is very diverse and there is not enough research to know 

what works best. 

There is consensus on many recommendations and strong reservations about several that did receive the required two-thirds 

vote for adoption. Differences among stakeholders reflected competing priorities, protecting the health and safety of residents and 

supporting consumer preferences and decisionmaking. 

A number of groups felt the recommendations gave more prominence to consumer and decisionmaking over protection and safety. 

Consumers may not always have enough information about a specific facility to understand the risks to their health and safety and 

to make decisions about where and how care will be provided. 

On the other hand, control and independence are important to 

quality of life and self-esteem. Systems that are flexible, offer 

choice, and emphasize consumer decisionmaking are generally preferred by consumers. Both perspectives are important and it is difficult to find a balance, but balance is what I believe is needed. 

The report’s value lies, in part, on the presentation of all the proposals, the rationale for them, and the supplemental positions that 

present alternate views. The array of issues and options presented 

will help States and stakeholders understand the issues and decide 

their own approach. 

The report offered differing opinions about the value of a philosophy and principles of care. The number of States including a philosophy in their regulations has almost doubled in 6 years, from 15 

in 1996 to 28 in 2002. By itself, a philosophy does not specify the 

requirements for licensing, but it does set a framework and gives 

us a benchmark for designing rules governing the accommodations, 

admission and retention criteria, service to be provided, staffing 

patterns, and training. A philosophy is a very useful way to frame 

regulations. However, we do not have enough research about how 

it works in practice and whether one approach or the other has better outcomes. 

27

Recommendations addressing screening and assessment, care 

planning, resident contracts, move-out protocols, and others offer 

helpful guidelines to States. The recommendations dealing with 

medication administration reflect trends among States. Sixty-four 

percent of the States now allow aides who have completed and 

passed a training program to administer medications. Ninety-eight 

percent allow aides to assist with self-administration. Thirty-three 

percent require facilities to have a consulting pharmacist, and 

other States require that medications are reviewed by registered 

nurses. 

As facilities serve residents with greater needs, assistance with 

medications has been cited as a concern by regulators. About half 

the states reported in 2002 that problems with medications occurred frequently or very often. The frequency of problems was not 

associated with who may administer or assist with medications. In 

fact, focus groups conducted by the Rutgers Center for State Health 

Policy suggest that errors may be less frequent when trained aides 

are allowed to administer medications, a somewhat surprising finding. 

The report contains some excellent discussions of the barriers to 

expansion of affordable assisted living. Affordable housing programs, such as low-income housing tax credits, HUD 202 programs, 

and Section 8 vouchers are now being asked to support a product 

that was not envisioned when these programs were established. 

Currently, less than 15 percent of assisted living residents are lowincome, while the percentage of low-income nursing home residents 

is far higher. If assisted living is to be a viable option for low-income tenants, Federal policymakers need to consider the changes 

outlined in the report. 

Whether you agree or disagree with the recommendations, the 

report is an excellent tool to frame policy options and encourage 

discussion at the State level. There are clearly two distinct approaches to regulation among the Workgroup members. It will be 

useful for the group to develop a side-by-side set of model standards to fully develop and compare each approach. 

The Workgroup also recognized the need to develop outcome 

measures, update the recommendations, develop practice protocols, 

and offer technical assistance to States upon their request. There 

is much that we do not know about assisted living. What is the impact of different regulatory approaches and requirements? How do 

they affect quality? Do levels of care or general licensing guidelines 

work best? Do regulations based on philosophy of care produce different outcomes than regulations that do not? Research on assisted 

living in relation to the regulatory requirements is limited and 

much more is needed. 

While stakeholders disagree about the direction and content of 

the recommendations, they agree on one thing. We are not where 

we need to be. We know that regulation alone does not guarantee 

quality. We know that some facilities offer high-quality care, others 

are eager to improve that may be lagging, and still others seem unable or unwilling to address quality issues. We hear that facilities 

are keeping people with needs that they do not have the staff to 

meet. It is important to distinguish between practices that are not 

allowed under regulation and practices that may warrant changes 

28

in regulation. We always need to understand when enforcement 

needs to be improved or regulations need to be strengthened. 

The results of the Workgroup will advance the development of 

State standards that achieve what all stakeholders want, quality of 

care for people served in these residential settings, and I thank the 

committee for its work in this regard. 

The CHAIRMAN. Robert, thank you very much for that testimony. 

[The prepared statement of Mr. Mollica follows:]

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The CHAIRMAN. We will now turn to questions of our members 

here and we will adhere to a 5-minute rule and move through the 

rounds as often as we need until all of our questions or your additional comments to them are dealt with. 

Stephen, let me first start with you. I noted that there was apparent difficulty in meeting a common definition of what constitutes assisted living. Will you articulate why they had, collectively, such difficulty? 

Mr. MCCONNELL. Again, as I mentioned, there are people who 

felt that the definition should be more stringent and others that 

wanted to keep it looser. What we ended up with was a series of, 

in effect, principles around which many people could agree. 

There were a couple of things that were important differences for 

some of the groups. One was whether assisted living facilities 

should be required to have private rooms. That is an issue that we 

felt there isn’t enough evidence to suggest that it is necessary. It 

could increase the cost. But some people felt very strongly about 

that. 

A second issue that got the group tied up was around levels of 

care. Levels of care exist in regulations in your State, Mr. Chairman, and in several other States. While we think that levels of care 

make sense, our particular concern about the definitions of levels 

of care that were being developed by the workgroup is that they 

weren’t specific enough to protect people with dementia. So that 

was another issue around which the group couldn’t agree. 

I think part of it, too, is that if we had come up with a very narrow, strict definition, it is entirely possible that this would have 

ended the conversation in many States because there is such variability out there in how it is defined, and so I think that was at 

least an argument for why it shouldn’t be too tightly defined. 

The CHAIRMAN. Dan, there are numerous competing thoughts on 

the various aspects of care in assisted living, or in that context, 

even to the extent of licensing requirements of facilities, and yet no 

definition of what is an assisted living facility. I think of where my 

mother-in-law lives today, in a large facility in Tucson. She lives 

on the independent side, but there is also the assisted side. There 

seems to be a line at which that facility defines and cares for its 

residents. Can you explain why there is this universe of different 

viewpoints and are there ways to bring a consensus on such definitions of terms? 

Mr. MADSEN. I believe there is more in Part A when we talk 

about the definition of assisted living and that there has been some 

controversy about what that is. I know what we do, and I am in 

that business, and I know that there are domiciliary services that 

we provide as part of our assisted living and it is very well defined 

by bullet point. 

I think when, using your example in Tucson, where we have two 

communities, we are seeing the past change a bit in that there 

were segregated areas for assisted living at one time and we are 

seeing that become more mainstream and more integrated, which 

we think is a good thing, because residents are now coming in and 

looking at services not only for assistance with daily living skills 

because they need them, but because they want them, and we are 

seeing resident choices. We are seeing that they want to have 

37

meals delivered at different times. They want certain types of assistance, certain types of services, and served to them in their 

apartments and where they live versus an area of the building or 

a place where that is more regulated. 

So we look at our programs and we try to ensure the quality of 

the program itself. We focus on the quality of services being rendered. Or the fine line becomes to what level of service and still 

respect their dignity and choice and that they are in a home of 

their own within their environments, that they have choice to bring 

in outside services, for example, to receive higher levels of care 

than what we are licensed to do or comfortable in providing. 

The CHAIRMAN. You made one other comment that I thought was 

fascinating because I actually watched it work in this particular 

community that I am most familiar with, and that is the residents’

council. The empowerment of the residents was phenomenal and 

the changes they brought about within a reasonable spectrum were 

very satisfying to them and they really did feel they were full participants in a community of common interests and helping guide 

that particular provider and that facility. I think you are right. 

That is a phenomenal tool in a regulatory process, or at least in 

a process of balance and quality of care, when the residents are 

empowered to participate. 

Mr. MADSEN. I believe as well that we pay great attention to 

family members. We answer to the consumer, and in a very competitive environment that it is today, where we have families that 

are more educated about retirement communities, assisted living 

communities, they are shopping, there are higher quality providers 

today, the highest quality providers today that I have seen ever in 

the industry that I have been in for 15 years. We are absolutely 

operating at a higher level because of the competitive environment, 

and it is the right thing to do. But we raise the bar on each other 

constantly. 

The dialog that we have with residents and their families is extraordinary. We work very closely with resident opinion surveys. 

We formally do them on an annual basis, but we have secret shops 

that we perform monthly from an outside company giving us a perspective on the quality of our services that we offer, from the taste 

of the food to the cleanliness of the building to how they are treated by staff, and we do our own. 

Absolutely, we do our own surveys, and when we are onsite or 

we call residents, we call families. I personally call families every 

month and ask how we are doing. When in the communities, we 

meet with families, we meet with residents, and we get their feedback and we make changes. They are telling us what they want 

and we want to meet our needs. 

The CHAIRMAN. Dan, thank you very much. 

Now, let me turn to my colleague, Senator Breaux. John? 

Senator BREAUX. Once again, I thank not only the witnesses, but 

everybody who has participated in producing this very elaborate 

document, the question now is, what becomes of the document? 

Does it go to a library somewhere and gather dust and 10 years 

from now, somebody will pick it up and say, you know, they did 

good work back there a decade ago, but really nothing was ever 

done to follow up on it. 

38

So the question is, what becomes of this document? Is it something that the various States should pick up and utilize in revising 

or, in some cases, establishing their rules dealing with assisted living facilities? Is it something that Congress picks up and says, this 

should be a national standard of what all assisted living facilities 

should look like in terms of how they are regulated? Give me some 

discussion as to what you think perhaps should happen to this document. 

Mr. MCCONNELL. Senator, we think this is a conversation that 

needs to happen primarily at the State level, and we have already 

had conversations with our state advocates about the key recommendations that relate to dementia care. We are encouraging 

them to work on these issues in their own State. This, as has been 

noted by everybody, is a terrific reference document. You can see 

where all the various interests lie, and it helps elucidate the issues, 

not just what a group’s perspective is, but what are the kind of 

both sides, three sides, four sides of an issue. 

At the Federal level, it is less clear. I think as Medicaid becomes 

more a part of financing for assisted living, should that happen, 

there is more of a stake in this by the Federal Government. But 

we would still argue that the variability at the State level is not 

a bad thing entirely, that trying to fit assisted living into one box 

will reduce some of the flexibility and individuality that is still important in this industry. 

Senator BREAUX. Mr. Madsen, what do you think? 

Mr. MADSEN. I totally agree. I believe that the one-size-fits-all 

approach would be difficult to employ. We represent different 

States, as you do. We have different cultures. I think this is a 

great, great point of reference. This is a continuing improvement 

process. That is what it needs to be—— Senator BREAUX. Suppose the States just ignore it. 

Mr. MADSEN. I think that the States have obviously—we are seeing many of the States make adjustments in their assisted living 

regulations most recently, that they are looking for tools. I know 

the States that were in there looking for some guidance that they 

can customize to their own States and meet the needs of those residents. They are very active. States are very active in our industry 

and they are doing a good job. 

Senator BREAUX. Some are, not all of them. 

Mr. MADSEN. Yes. 

Senator BREAUX. Mr. Mollica. 

Mr. MOLLICA. I think the report will be used by States. They 

clearly know about it. They are looking forward to it. I had one 

State person suggest that having a recommendation supported by 

the Workgroup might help them adopt it in a State where there 

might be some opposition. So I think it will be a very useful document. 

In terms of the Federal process, I think the first role would be 

to fund more research. We clearly need to know what works and 

what doesn’t, and whether it is the broad approach, the broad definition that was included in the Workgroup’s recommendation or a 

more narrow definition that was preferred by some members of the 

Workgroup. We need to know if one set of outcomes is derived from 

a certain staffing approach or training approach or levels of care 

39

versus non-levels of care. We simply don’t know enough about what 

works to say that it should be one standard or another. 

Senator BREAUX. Thank you. I notice one of the recommendations is a Center for Excellence in Assisted Living. I have always 

felt that when you give consumer choices, that you also have to 

give them information about what the choices are. Otherwise, bad 

information produces bad choices. So I have always thought that 

you ought to be able to go to some type of a national site to look 

at, whether it is nursing homes or whether it is toaster ovens or 

whether it is assisted living facilities, a type of consumer report on 

how the various organizations are doing so that when you make 

the choice, you know that you make the choice based on a history 

of performance. 

Is this what we are talking about on the Center for Excellence 

in Assisted Living? Is this a research group, or is this something 

that would help provide information to consumers as they go out 

and pick the best assisted living facility for their folks or themselves? 

Mr. MCCONNELL. As I understand it, Senator, it is all of the 

above. It is to conduct the research to help us get to the point 

where we are looking at outcomes. It is designed to provide feedback to the industry so that what we learn about good care can be 

fed back and care can improve. It can also provide information and 

guidance to consumers. 

This is a concept that has been around for a while. We were involved in a smaller group several years ago called the Assisted Living Quality Coalition. This concept arose then, as well. I think it 

is a good idea. There is some nervousness about it, which probably 

suggests that it really is a good idea—— [Laughter.] 

Perhaps because consumers would have a role in guiding this, as 

well as the industry. It is in some ways an embodiment of what 

you have tried to do by creating the Assisted Living Workgroup. 

Senator BREAUX. There are a lot of issues out there. You mentioned the question about who gives out medications in assisted living facilities, whether you are going to have to have a registered 

nurse or someone with a nursing background or degree to help administer the medications or whether you can have an aide who has 

been trained to provide the meds. All of these things are very, very 

important issues of which there are various opinions. 

What about, the final thing, licensing according to a degree of 

care? Obviously, assisted living facilities can range from those who 

are treating very healthy older Americans who need very little help 

as opposed to those who need a great deal of help, on the verge of 

having to require a nursing home facility, and you would think 

that the degree from a licensing standpoint would be different depending on the degree of services they provide. Can you give me 

any thought on that, anybody? 

Mr. MOLLICA. I think you have to look at the total context of the 

regulations to know how either approach would work. If you allow 

a more flexible array of services to be provided and serve people 

with different needs within the same facility, then, as a regulator, 

you have to look at the admission agreement and the staffing pattern and your oversight activities might be done a little bit differently than if you were looking at a specific level of care. 

40

I personally think that the general approach is preferred among 

consumers who want to age in place. They don’t want to have to 

move when their level of care is no longer appropriate for that facility. On the other hand, as their level of care changes, there is 

a need for the oversight agency to make sure that the staffing pattern and the training of the staff is consistent with the changing 

needs of those facilities. 

Again, I don’t think there is research one way or the other that 

suggests which is better. The level of care approach might be easier 

to monitor because you know specifically what you are going to 

look for. If the staffing patterns for one level or another are different, you know what to count. If the training requirements are 

different, you know what to look for. On the other hand, it doesn’t 

have the same amount of flexibility that the broader approach 

does. 

Senator BREAUX. I don’t want to take more than my allotted 

time, but I guess the question is who determines whether an assisted living facility can accept Mr. and Mrs. Smith into a facility? 

I mean, some of them are Ritz Carltons. They run beautiful facilities, but they lack in terms, I think, of the amount of medical care 

they can give to an individual. How do you regulate that? It is a 

very difficult question about whether this person qualifies for a 

given institution. I am not sure how we go about setting those 

standards. Some people obviously sicker than others. Some need 

very little medical attention. Others need a great deal. Should 

there be someone that says, no, you cannot take this couple because they require far too much care, or can a facility take anybody 

who shows up with the money to pay the bill? 

Mr. MOLLICA. Well, I think States are, as expected, feeling a lot 

of tension in that regard. Some states allow facilities to take care 

of whomever they have the qualified, trained staff to serve, and 

others will draw some boundaries barriers, some lines. It is either 

a list of conditions or the need for 24-hour care or unstable medical 

conditions. 

I think whichever approach a State uses, they have to look clearly at what the facility’s capacity is and who the staff are. If the facility isn’t making the proper judgments, and that has been a concern among a lot of regulators, then the oversight agency has to be 

there frequently enough to step in and say, your staffing pattern 

either has to change or you have to ask this person to move and 

help them to do so. 

Senator BREAUX. I think that this document has been well put 

together. Nothing we do is the final answer to anything, but I 

think this really moves the ball down the field in a major way as 

far as establishing in one comprehensive document a set of guidelines that has been thoroughly discussed, not just by the Federal 

Government or not just by the State Government, but by the actual 

utilizers of the services, as well as by the providers of the services. 

I would hope that this sets a standard or a pattern that we can 

utilize on other difficult issues where we bring people to the table 

and somehow almost force them to do what has been done here, 

and sometimes they do it voluntarily and sometimes they do it with 

a little encouragement and sometimes it takes more than a little 

41

encouragement. But this is a good product and put together by 

good people and I thank them for it. 

Mr. MADSEN. Senator Breaux, if I may go back and elaborate a 

little bit on the Center for Excellence and some of the needs for information for consumers, because I think that is an important 

issue, is there a catch-all checklist that you are going to be able 

to go on and seek information regarding each facility or community 

out there that is going to be standard and allow you to make 

choices for a family member or yourself? No. I don’t believe that is 

possible. 

Should there be an incredible amount of information provided 

and guidelines and tips and the best ways to analyze any of those 

situations? Yes. I think we need to do a great job and have done 

a much better job in that area because we are focusing on something that is very, very important, and as a provider and being out 

there, it is a life decision. This isn’t buying a car. These are people’s lives, and there is nothing, there is not a survey, there is not 

a document, there is nothing that will replace going and seeing the 

community and talking to staff and talking to residents and talking 

to families that have received services there. 

Nothing will replace going and visiting and getting the feeling 

and interviewing people and finding out the quality, attending resident council meetings and seeing, does it work in this community, 

because they are going to vary, and no checklist will replace that, 

ever. These are lifestyle decisions and I think they need to be taken 

seriously and I think that is the best way to make those decisions. 

Senator BREAUX. I don’t disagree with that, but, I mean, a lot of 

families don’t have time to visit ten different facilities. 

Mr. MADSEN. I agree. 

Senator BREAUX. It would be nice if we could visit every facility 

within a city or a State and say, here is the best one for Mom and 

Dad. 

Mr. MADSEN. I agree. 

Senator BREAUX. That information could be a good starting point. 

I mean, I have always said that if a facility has had ten fire code 

violations last year, I would like to know that somewhere, because 

I would say, whoa, I may go visit and see if they have changed it 

because it looks pretty bad up front. So I think you need that continuum of information that kind of gives you a parameter so that 

then you can go out and pick the ones that are really good and exit 

those who are really bad. 

The CHAIRMAN. In other words, it isn’t buying a car, but you 

darn well better kick the tires. 

Mr. MADSEN. Exactly. Absolutely. You better drive it, test drive 

it. 

The CHAIRMAN. Senator Wyden. 

Senator WYDEN. Thank you, Mr. Chairman. I think all of you 

have been excellent, and I think you heard me say at the outset 

that my goal is to make sure that every single person in an assisted living facility secures a basic level of protection, and at the 

same time, we look at a way to try to be innovative so as to give 

industry and providers enough flexibility to avoid some of the problems that we have in nursing homes. 

42

I think probably the best way that we can proceed now is to have 

you walk us through some of the specific challenges. Let me take 

the example of dementia as a way to get us into this debate because I think that this is an area where we are clearly talking 

about a lot of frail people, we are talking about people that certainly consumer groups have advocated for and many in the industry have tried innovative approaches to care for, as well. 

Steve, if you would, tell me what percentage of States, or a number of States, are not yet where we need them to be with respect 

to treating dementia. Give us a sense right now of how serious it 

is in the United States with respect to the dementia question. 

Mr. MCCONNELL. Bob knows the specific numbers, but a number 

of States have regulations, disclosure requirements for special care 

units. In other words, those that hang out a shingle claiming to 

have a special care unit for people with dementia would face disclosure requirements and there are better restrictions for many of 

those facilities. But as I pointed out in my testimony, most people 

with dementia are not in special care units, so there is very little 

protection from them. 

Second, one of the challenges with dementia is that we are, with 

advances in science, able to diagnose people earlier. Someone in the 

very early stages of dementia needs a whole different set of services and care than someone in the later stages, this relates back 

to the issue of levels of care. If that is defined simply by a diagnosis, that is a problem. That is like saying you get a diagnosis of 

Alzheimer’s, you can’t drive. Well, we know that is not appropriate. 

So I think the key is as I said, ‘‘That there are requirements that 

staff be trained to recognize the signs and symptoms of dementia, 

and that there be basic training and basic protections in place.’’

Bob, you can straighten out the record on this, but I think there 

are very few States that provide protections for people with dementia in all assisted living facilities. If they do it at all, it is really 

only for special care units. 

Senator WYDEN. So would you say a third of the States are not 

where the country ought to expect them to be with respect to the 

dementia question? What I am trying to do is to give us a sense 

on a very key question with respect to striking the balance between 

caring for frail and vulnerable people and at the same time ensuring that we will have the providers we need and the flexibility for 

them, get a sense of the problem. Then I am going to walk you 

through what the report says with respect to the dementia issue. 

But first, give me a sense, if you would, of how serious the situation is with respect to where the States are on this particular key 

area of the frail elderly population. 

Mr. MCCONNELL. Bob, do you have the specifics? 

Senator WYDEN. Mr. Mollica——

Mr. MOLLICA. Between half and 60 percent of the States do have 

provisions for facilities serving people with dementia and about 40 

percent or so do not. 

Senator WYDEN. So 40 percent of the States have nothing at all 

on this? 

Mr. MOLLICA. Right. 

43

Senator WYDEN. Of the States that do have protections for those 

with dementia, do we have any sense of whether they are good, 

bad, medium? Is this something that the task force looked at? 

Mr. MCCONNELL. I think most of them, as I said, relate to disclosure requirements so that it is really only a matter of telling people 

what is provided, and then only if you declare that you have a special care unit. So I think disclosure was a good first step, and is 

very important. But, it is not enough. 

Senator WYDEN. All right. So we have got 40 percent of the 

States with nothing, then we have 50 or 60 percent of the States 

with nothing, and Steve and the Alzheimer’s Association says that 

it is fairly modest with just disclosure. 

Dan, do you want to weigh in on this? Do you have a difference 

of opinion on anything? 

Mr. MADSEN. I don’t have a difference of opinion. I think, again, 

it is a challenge. It is that balance that you are trying to strike, 

and that is, I think, a great first step is disclosure and understanding what you are qualified to provide in services. I know in 

our company, we have chosen not to treat that level of care because 

that is not where our specialty lies and there are people that are 

very, very good in that area, in the specialty care and Alzheimer’s 

area. I think the disclosure piece of making sure the consumer 

doesn’t expect to receive care in those areas is a great start. 

The identification, to be able to see the signs, I think is good. We 

should all be trained to a degree of that in all areas of life. But 

I think we also have the personal physician that is working with 

the resident and identifying those issues better than we can, and 

they are making recommendations on levels of care and where they 

should receive those services. 

Senator WYDEN. So using this report, how can we take this document and upgrade what is done in the dementia area? Senator 

Breaux made the point, for example, with respect to making sure 

that this just doesn’t gather dust somewhere. I think we can get 

pretty significant agreement among consumer groups and patient 

advocates and the industry that we need to have a monitoring process, and I assume that you are thinking about that in the context 

of a national center in some way. 

But how do we take this report and use what you have just told 

us with respect to dementia, a serious area, to make sure that we 

are putting in place the kinds of policies that bring about the 

changes we need? 

Mr. MCCONNELL. It is both to try to get requirements in place 

that, for example, staff are trained throughout these facilities, not 

just if you have a special care unit. Any assisted living facility 

should train staff to recognize the signs and symptoms of dementia. 

So that is partly a requirement and partly training. The Alzheimer’s Association is trying to help in communities around the 

country by providing resources on how to recognize dementia. So 

it is both putting some requirements in place and then making 

sure that the tools are available to facilities. 

I listed out a number of other things that should be put into 

State requirements. Each state will vary on exactly how this plays 

out. 

44

For example, on the issue of training, we had some very specific 

requirements we wanted to see in terms of training on dementia 

care and those didn’t survive. The recommendation was watered 

down to get a two-thirds vote. But those are things that we will 

push for at the State level. 

So some efforts will focus on specific legislative requirements. 

Some will focus on working with the industry to try to upgrade the 

level of training. 

Senator WYDEN. I want to ask just one other question. However, 

I really encourage you, in some of these key kinds of questions with 

respect to services for the frail that we take additional time to sort 

of walk through how we make progress in those kinds of areas. I 

think, as much as anything, if we have learned in the past, is if 

you can get at these questions early on in the formative days of 

policymaking at the State and the Federal level, you are more likely to prevent the kind of blow-ups down the road. 

My last question, as I looked at it, there were areas where it 

seemed to me we could have some better coordination. For example, when a resident is moving in, apparently, the group came to 

the conclusion that there ought to be a pre-move-in screening process and then an initial assessment. There is going to be some concern about how you coordinate this so you don’t just chew up a lot 

of time and additional cost. What efforts are underway to try to 

better coordinate some of the ways to address those concerns? Is 

that something you brought up in the report, because, I mean, it 

is in the report. 

Mr. MADSEN. Sure. Absolutely. I think that assessment processes 

is a very viable tool. It is something that—important in a—when 

a resident moves in, again, it is a life decision and I think it is important to, one, have the disclosure, these are the services we can 

and cannot provide in the setting, and go through the assessment 

process, work with the physician, work with the family, work with 

the resident to identify the services that you can and will provide 

and are saying you will provide and then to what level of quality 

and care. 

You know, is that something that the States should work with? 

Absolutely, and they do. You know, several States are working with 

that very accurately. What is that assessment process? What is 

that entry process? Again, is that something that comes from the 

Federal standpoint? No. I think the States are doing a good job. 

Senator WYDEN. I would just rather make sure, for example, 

those dollars that may now get chewed up in a duplicative process 

are put back into services for people. I think those are the kinds 

of choices we are going to have to ensure get made Mr. Chairman, 

you have been gracious with the time for questions and I look forward to working with you and Senator Breaux. 

The CHAIRMAN. Well, thank you both. 

A couple more questions. Robert, do you think there are any additional areas of concern that should have been included in this 

study or should be included in future examinations and future 

studies that this one missed? 

Mr. MOLLICA. Well, I can’t think of one. They did a—— [Laughter.] 

The CHAIRMAN. Now, we have got——

45

Mr. MOLLICA. It is a challenge—— The CHAIRMAN. We have got 110 recommendations here that met 

the two-thirds requirement, but surely one slipped out that you 

thought had to be critical and should be there. [Laughter.] 

Mr. MOLLICA. I think the ones that didn’t meet the two-thirds requirement are still worth considering and I am very pleased that 

the report included them because it gives stakeholders and regulators an opportunity to look at what is there that they didn’t reach 

consensus on for their own deliberations. 

The CHAIRMAN. Dan. 

Mr. MOLLICA. There isn’t much they have left out. 

Mr. MADSEN. I agree. I am glad that we have the supplemental 

positions in there so that the States can see what was left out or 

what wasn’t approved by the two-thirds so that they can consider 

all recommendations, consider all opinions when formulating their 

regulations on a State level. I think it is great. 

The CHAIRMAN. Stephen. 

Mr. MCCONNELL. It is hard to imagine anything that was left 

out. If you think about whether this is too prescriptive or not prescriptive enough, most of the groups on the tails of that Bell Curve 

you talked about argue that it is not prescriptive enough. So I 

think it is really more a matter of defining these things more clearly. It is too bad we couldn’t have come up with a definition we 

could have gotten two-thirds vote on. But I think the issues are 

laid out clearly here and now it is a matter of playing them out 

at the State level. 

The CHAIRMAN. Senator Breaux mentioned—another question to 

all three of you. Senator Breaux mentioned in one of his comments 

that many studies that are done either at the auspices of the Congress or done by Congress end up on library shelves gathering dust 

and somebody simply cleans them off a decade or so from now, 

might look at them, and might just toss them. 

How can we help you, or how can we help the industry elevate 

this in a way that it actually get read, gets looked at, is viewed as 

a template from which to make decisions, and that we move this 

industry in the direction that it ought to be moved in, and that is 

at the State level with State regulation to assure those kinds of 

quality, some degree of uniformity, as we go through, so that this 

isn’t one of those dust-collecting projects? Recommendations, gentlemen, that we, I say we the Congress, we this committee, might 

participate in to lift it up? 

Mr. MCCONNELL. I suspect that if you threatened legislation——

[Laughter.] 

There would be a lot of activity on this, because I think there are 

many groups that are interested in preempting federal legislation. 

I think there is a genuine interest in addressing this at the State 

level, and if there was a fear that something might happen federally—I mean, the fact that you asked these groups to get together, 

my hunch is that many of us came together because we thought, 

either on one side, gee, maybe they are going to do something 

about this, or, oh, my God, they are going to do something about 

this. 

So I think keeping that stick there might not be a bad thing, as 

well as continued oversight by the committee. I think it is very imVerDate 0ct 09 2002 11:05 Aug 25, 2003 Jkt 000000 PO 00000 Frm 00051 Fmt 6633 Sfmt 6633 C:\DOCS\88255.TXT SAGING1 PsN: JOYCE
46

portant you do these kinds of things, where you are asking questions, you are looking into the issues, paying attention. I think that 

will help everybody keep working on this. 

The CHAIRMAN. Surely. Dan. 

Mr. MADSEN. I believe it is a living document. It is something 

that needs to be made available. It should be sent to the States, 

all interested parties. We certainly will urge all the providers to 

utilize this when looking at their own policies and procedure manuals, working with the State regulators. I think knowing that it is 

a continual improvement process, that we need to keep it alive. It 

is going to change. It is going to evolve. Our market changes and 

evolves—— The CHAIRMAN. Sure. 

Mr. MADSEN. Our residents, and I have seen over the last 15 

years change and evolve, and what they are looking for in assisted 

living is completely different today than it was 15 years ago, and 

it will be different 15 years from now and I think that we should 

always have a process in place like this. 

The CHAIRMAN. Robert. 

Mr. MOLLICA. I think that if you announced that you were going 

to have a hearing in 2 years or some period of time to look at what 

has happened to the Workgroup recommendations and what have 

the States done, that would initiate consideration by states that 

might feel complacent that their regs are OK the way they are. 

Even if they are, if they just look at it and compare their regulations with the complaint and survey results and compare what the 

Workgroup has recommended, it would be worthwhile to make sure 

the regulations are working well in a State that may not change 

their regulations. 

But I think in many other States, they will look at them seriously. At any given time, about half the States are tweaking their 

regs or refining them or totally revising them and they will look 

to the recommendations for suggestions about what they might 

consider. 

The CHAIRMAN. John, the last word, if you wish? 

Senator BREAUX. Not necessarily the last word, but I think the 

observation is correct. I think that while most of the payments for 

the assisted living facilities are currently private, I think that more 

and more, you are going to be moving into tax credits to buy longterm health insurance, which would mean that the Federal tax dollar is dramatically involved in it. You will see more and more 

States with more Medicaid waivers to allow Medicaid to cover the 

costs of these type of alternative facilities. 

There certainly is a legitimate national interest to make sure 

that the facilities are performing as they are intended to perform, 

so what we did with this is to say, look, the Federal Government 

doesn’t have all the answers but there is a legitimate Federal concern. So you folks that run the facilities and you folks that utilize 

the facilities, see if you can get together and come up with some 

recommendations that make sense. Rather than having us go out 

into it on our own, we wanted you all to do it as a first cut, and 

I think the first cut is a very, very good starting point. 

But I do think that we are going to be looking to see what happens with this document, and it won’t be 2 years from now, it will 

47

be sooner than that. But I guarantee you that to the extent that 

Senator Craig and I can work together on this, we are going to be 

saying, we want to know what happens to this wonderful document 

and that it is not sitting in a library somewhere. Thank you. 

The CHAIRMAN. Gentlemen, thank you very much, and for all the 

groups that participated, we want to thank you for your work effort. We think it is a phenomenal first step and a substantial document. 

With that, the committee will stand adjourned. 

[Whereupon, at 11:17 a.m., the committee was adjourned.] 

(49)

A P P E N D I X 


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Æ


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