Charles Reed Speaks at Development Conference

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Charles Reed
AARP Board of Directors
6th Annual W4A Staff Development Conference
Enzian Inn
Leavenworth, WA
June 12, 2008

Closing Keynote Remarks
THEME:  We have come a long way—so what’s next?

We have come a long way here in Washington in long-term care.

We have more people in home and community services, fewer people in nursing homes, no waiting list, no lidded programs. Our long-term care system is better than anywhere in the country, especially if you are a low-income person in need. Yet, you all know better than anyone that there are still flaws in our system. Services could be better. And access to services could be better as many families still have difficulty finding them.

In too many states around the country if you are poor and in need of long-term care the only real option you have to meet your long-term care needs is a nursing home. Here in Washington, people in need of LTC actually have options in the type of service they want and how it is delivered. In most states around the country this is unheard of. And much of the success of the long-term care system in this state is due to the great work that you do day in and day out.

As most of you know, for the last few years I have traveled around the country, sometimes as a consultant, sometimes as volunteer with the AARP National Policy Council, reviewing and working to improve long-term care programs operated by various states. I am sorry to tell you that in most states the long-term care programs are as fragmented and disorganized as they were 15 to 20 years ago. I am growing frustrated that more progress has not been made around the country in long-term care service delivery. There has been a great deal of federal money coming into states the last few years to improve long-term care, but not much has changed.

It is true that many states now have waiver programs to provide preferred home and community services. But in far too many states, these programs are lidded and have large waiting lists, and few people have access to services. At the same time, nursing home access is possible and states continue to spend most of their long-term care budgets on these institutions. I am sure you will agree that very few people you deal with want to go to a nursing home to receive care. Sometimes, of course, that is the best option, and I would say overall the nursing homes in the state of Washington offer good service. However, very few people want to go there. I think of I have met 2 people in the last 30 years who wanted to live in a nursing home, the only option in many states.

I am not the only person who believes that the long-term care system in Washington State is the best in the country or is at least better than most other states. There have been many national reports and studies that say there is something special in Washington State. The most recent report will be released in a couple of months by AARP, and it confirms that the LTC system in Washington is more balanced and accessible than most.

So why is it better here?

I believe there are seven reasons. I think they are pretty simple and straight forward and I am continually amazed that more states can’t figure it out.

1.  Core values that drive the planning and development of the long-term care system, such as these:

• Persons with disabilities and their families are entitled to maximum feasible choice/participation in selecting care settings and providers;
• Persons with disabilities have the right to expect “quality of life” personal dignity, maximum feasible independence, health, security and quality of care;
• Persons with disabilities have the right to choose/direct a care plan involving “managed risk” in exchange for advantages of personal freedom;
• The array of public service options and client choices may be bonded by reasonable considerations of cost effectiveness.

2.  A wide array of services for consumers and their families to choose from, with no one service being the most important. The most important service is the one the consumer wants and needs.

3.  A single place in state government responsible for planning and operating the long-term care system.

4.  A single point of entry to the long-term care system that also collects the data needed to manage the system.

5.  Fair rates for providers that are updated as costs increase.

6.  Organized groups of consumers and advocates who support the system.

7.  Committed workers like you, in the system.

In too many states, most, and sometimes none, of these circumstances exist. I have been harping on these issues for years. Now Medstat agrees.

I would like to talk now about what I think is perhaps the biggest change in the long-term care system here in Washington during the last six years. That is the unionization of LTC workers, primarily of home care workers. Now, regardless, if you like unionization or not, you will have to admit that the fact that a union representing home care and other workers is a major development in the long-term care system. This has major implications—some would say good, some would say bad. Your view of good or bad probably depends in part on where you work or how you use the long-term care system.

If you are a home care worker and now receive higher wages and many new fringe benefits, you are probably pleased about the union. If you are a low-income consumer eligible for Medicaid, you are also pleased. You now benefit from a more stable work force, your worker is better paid, and in most cases you have health care and other benefits, even if you are a family member. You still hire and fire your own workers, and funding for services is in place and unlikely to diminish. If, however, you are a private-pay consumer, you may have a more difficult time finding a worker for what you want to pay, especially if you do not offer benefits.

If you are a case manger, you may have mixed views. It may be easier for you and your clients to find workers. But you may not like the idea of the union having a say in how you do your job. If you are an area agency on aging administrator or a state level bureaucrat, you probably like the idea that the work force for long-term care is now more stable, and that workers are making more money receiving more benefits. You may worry however that all of this is about to break the state bank. Other LTC services also need more funding and it is difficult for them to compete with the union. If you are a legislator, you probably wonder where the funds will come from.

There is no doubt in my mind that unionization of the long-term work force is the most significant development I have seen in Washington State since the emergence of community-based services. For years, the nursing home lobby was by far the most powerful long-term care group dealing with the legislature and the governor. That is no longer true. Now the union that represents home care workers, SEIU 775, is by far the most powerful long-term care lobby in Washington State on long-term care issues. Whether this is good or bad may depend on where you are coming from.

SEIU views Washington State as a model long-term care program. They realize that it is the most balanced program in the country, and they are working hard around the U.S. to replicate it in other states. I think they are making pretty good headway. More than any organization I know, SEIU has the ability to get high-level elected officials to listen to what needs to be done in long-term care to balance out the system.

Indeed, Washington State has an LTC program that is envied across the country. As I said before, however, you and I know there are areas that need improvement. Of course, there is never enough money to do all that needs to be done. The system—and how to access it—is still confusing to many. As you know, most consumers and their families enter the long-term care system in a state of confusion, frustration and fear. I think as well that we still do not have enough real options for consumers to have a choice about how they want to receive needed services.

Choice is very important to me and I suspect most of you feel the same way. One of the ways that I open a presentation on long-term care to people who don’t know much about it, such as elected officials, legislators, etc. is by saying that everyone in the room has an opinion about who they share a bedroom with, who they share a bathroom with, what time they get up in the morning, what they have for breakfast, what they watch on TV, and so on. I go on to say that we all make what appear to be very simple choices everyday. We take these things for granted. If and when you have long-term care needs and the only option you have is to move into an institution, someone will begin to make most of these decisions for you.

I think that most of the people who hear this simple illustration begin to understand what choice is all about in long-term care.

I would like to give another example about what choice is all about. A few years ago, my father-in-law was very ill. In fact, he died the day after this event. My wife and I were visiting him and his wife in their home in Arizona. He was very frail and was sitting up in his easy chair. The hospice worker came to visit him this day. She said to him “Stanley do you want me to help you take a bath today?” My wife, her four sisters and her mother who were all in the room said “Oh no, Stanley is too frail, he couldn’t possibly have a bath today.” The hospice worker looked at Stanley and said “Stanley, do you want to have a bath today?” Stanley said “yes.” My wife and her mother and her sisters all loved my father-in-law; they wanted the best for him. The hospice worker, however, knew how important it was to maintain Stanley’s options as long as possible, even for things that may not seem very important, but are, of course, very important.

The point here is that many of us well-intended folks make decisions for those who may look frail and may be frail, but can still make decisions if given a chance. Now we all know that many folks do need help making decisions. I think we should err on the side of giving people a choice even if they have disabilities and may be frail.

So we have a good thing going here in Washington. Let’s keep it up.

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Now let me shift gears to the national scene. As many of you may know, I was recently appointed to the AARP Board of Directors. I served on the AARP National Policy Council for last six years and chaired the Health and Long-Term Care Committee. Our major work for the last few years had been on health reform. I would like to report to you that great progress has been made on this issue, although if you read papers or watch TV, you will know this is not the case. I am optimistic, however, that we are on the verge of making real changes in health care and financial services. I believe we have to do this and so does AARP.

Once upon a time, we could count on our employers, the government, even each other, for financial security and health care. But times have changed. Today, the burden falls squarely on us, and it can be a difficult burden indeed. I suspect we all know people who are having problems saving for retirement, who can’t get health insurance because of a pre-existing medical condition, or who needs long-term care but can’t afford it.

These issues are not just the concerns of the neighbors down the block. They are, rather, issues that concern every American family. They are issues that unite all of us since, someday, we may require medical attention or long-term care, and we will all, presumably, stop working. They are issues that we all worry about, now and then.

Today in America, we’ve reached a tipping point. For the first time in the history of public opinion polling, a majority of Americans say they are afraid the next generation—our children—may be worse off than their parents.

And with good reason. It is hard not to be afraid when:

• 47 million Americans are uninsured; many of them are unable to afford health care because rising costs have priced them out of the health insurance market;

• 29 percent of Americans say they have skipped medical treatment, tests or prescriptions because of skyrocketing costs;

• Only one out of five workers today has a traditional pension plan;

• Only half of American families have saved money in any kind of retirement account, and the typical family has saved less than $35,000.

And so on down the line. In communities across the country, economic jitters—triggered by a collapsing housing market, rising energy costs, a reeling stock market, and a growing fear of recession—have reminded thousands of Americans that they may be living too close to the edge. They are, possibly, one major illness away from financial ruin; or, they just might outlive their retirement savings.

The successes in Washington State notwithstanding, the broader national picture, of a dangerously flawed health care system and a tenuous, uncertain road to financial security, is bleak indeed. Answers and meaningful action have been in short supply. And that is where AARP and Divided We Fail come in.

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As some of you may know, 2008 is AARP’s 50th anniversary year. From the very beginning, AARP has believed that all Americans should have access to affordable, quality health care, long-term care, and lifetime financial security. These are not luxuries.  They are basic needs. They are the foundation upon which AARP was built, and the birthright of our children and grandchildren. In a very real sense, they anchor the American dream.

Divided We Fail is a national effort designed to engage the American people, businesses, interest groups, non-profit organizations and elected officials in finding bipartisan solutions to ensure lifetime financial security and affordable, quality health care for all Americans. AARP launched this long-term, public outreach effort together with the Business Roundtable—an association of CEO’s from the largest companies in the nation; the Service Employees International Union—SEIU—the fastest growing labor union in North America; and the small business owners of the National Federation of Independent Business—NFIB.

We named the initiative Divided We Fail to underscore the idea that individuals, business and government all have a role and a responsibility in securing lifetime financial security and health care, and that everyone must work together to create solutions that will benefit all generations.

Thousands of AARP members and non-members continue to participate in Divided We Fail events around the country with experts and leaders from across the political spectrum. The idea is to jumpstart a national conversation so that we can get past the partisan gridlock in Washington and start delivering answers to our nation’s most pressing domestic challenges.

Divided We Fail isn’t necessarily about what AARP thinks is best. Surely, there are no easy answers or simple solutions. Many of you know AARP primarily as an advocacy group that helps shape public policy at the national, state, and local level. We have a myriad of policy positions on strengthening Social Security and protecting pensions, for example. And I promise you that AARP members will not be shy about making these positions heard. The fact remains, however, that health care and financial security are too complex and important for any one organization to solve alone.

Through Divided We Fail, AARP has outlined a bold platform for health and financial security. It boils down to this:

1. Providing for a secure retirement by strengthening Social Security, and encouraging personal savings and effective retirement plans;

2. Providing access to affordable healthcare coverage, including prescription drugs, without burdening future generations with these costs;

3. Giving people tools to manage their finances and ensuring that people of all ages can continue to work and contribute; and

4. Providing choice when it comes to long-term care, so people can maintain their independence at home or in their communities.

A major focus of our efforts has been to get people to sign pledges of support for the Divided We Fail platform, and to ask people to share their stories, their experiences and their concerns about health and financial security. We wanted to find out what keeps people up at night. Are they afraid they won’t have enough money to retire? Are they holding on to a job to keep health insurance? Have care-giving responsibilities affected their personal health and finances?

The idea is to take these stories to state capitols, the halls of Congress, the Oval Office, corporate board rooms, anywhere and everywhere—so that they become part of our national discussion.

The response has been overwhelming. To date, we’ve collected nearly a half-million pledges and stories. Well over 270 members of Congress have signed the pledge or have sent us a letter of support. In Washington State, Senators Maria Cantwell and Patty Murray, as well as 6 members of the Washington delegation to the House of Representatives, have signed the pledge in support for Divided We Fail.

As well, more than 80 diverse organizations have signed on. And we have trained more than 5,000 volunteers. It has been a great beginning.

Divided We Fail’s top priority in 2008 is to get the presidential nominees to spell out specific approaches to fixing health and financial security and to pledge to take action to put aside partisan gridlock and work together to find and enact solutions. The American people deserve a vigorous debate and concrete commitments to give the next President a mandate for action.

Much of our work this year will be devoted to educating the public about the various options to address health care and financial security, along with the trade-offs that accompany each of them. We want to encourage policy innovation and discussion. A series of national events will include representatives from both conservative and liberal interest groups and think tanks.

After Election Day, we will go all out to hold the next President accountable for promises made to deliver meaningful and bi-partisan solutions to America’s health care and financial security challenges.

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I began this talk by highlighting the enormous strides we have made in Washington State in recent years, in improving long-term care services and in moving proactively and creatively on the aging agenda. There is no doubt that because of the collaborative efforts of everyone connected to W4A, the quality of life for thousands of seniors in our state is better.

Yes, we have come a long way. So, what’s next? Well, I’d like to think that similar strides can be made at the national level, and I believe that Divided We Fail is precisely the conversation-starter we need. I would invite you to visit www.dividedwefail.org and encourage your family and friends to do the same. Share your ideas and stories, and remember, it is up to all of us. We are all stakeholders in notion that health care and financial security are a fundamental premise of the American Dream.

My thanks to all of you for your participation in this conference, and for graciously providing me with this opportunity to present.