Introduction

The high-pitched siren of an ambulance, the green-garbed surgeon operating beneath bright lights -- these are the visible components of the health care system that goes into action when illness is acute and symptoms cry out for instant attention. But the setting is less dramatic for people who face daily struggles in their own homes or in out-of-home care facilities. There, health care is a minute-by-minute, day-after-day process of helping someone live with pain, physical limitations or mental disabilities.

Almost 13 million Americans have chronic problems that require ongoing assistance -- a constant and costly demand on a health care system that was never designed for prevention and maintenance but instead for identifying illnesses, treating symptoms and sometimes producing cures. The result of this mismatch between need and design is that people often go without help, face conditions that deteriorate prematurely and sometimes are pressed into high-cost institutions before necessary. As the Baby Boom moves into its declining years and begins to balloon the elderly population, the pressure is building to change the approach to long-term care.

In California, the Little Hoover Commission has had a standing commitment to improving the quality of long-term care for the elderly. In the mid-1980s, the Commission issued reports on skilled nursing facilities and residential care facilities, in both cases contributing to major legislative reforms of standards and oversight.

In 1991, the Commission re-examined these areas and added a third, in-home care, in a series of three reports that called for further reforms and improved state oversight. In particular, the Commission found that long-term care services were fragmented across many state departments and services were difficult for citizens to access. The Commission called for the State to ensure that citizens have a choice along a continuum of various care options, with a single point of access for assessment and referral.

The Commission has not been a lonely voice in this regard. Dozens of groups and reports at the federal, state and local levels have called for restructuring long-term care services to increase both effectiveness and efficiency. Perhaps the most succinct summation comes from a discussion paper titled "Long-Term Care Reform: Rethinking Service Delivery, Accountability and Cost Control" that was put together for a General Accounting Office/Kaiser Family Foundation forum in July 1993:

Few experts believe that future long-term care needs can be met, much less paid for, simply by delivering more units of the care we provide now. Today both care providers and persons needing assistance express widespread frustration with the organization of, access to and delivery of long-term care services. At the same time, federal and state officials are increasingly concerned about the ability of the public sector to pay for services even now, long before the great demographic changes of the next century occur.

What's the problem with the current long-term care system? There's no simple answer. At the heart of it, however, is that services are not organized with the disabled person in mind as the consumer. Nor is the system organized to achieve well-defined objectives or to maximize effective management of budgets. In addition, the system is biased in favor of institutional and medical approaches to care. As a result, disabled persons may get institutional or medical services when other, less intensive, often lower cost services would be more appropriate. And significant gaps exist in nonmedical home- and community-based services.

What is at the root of the problem to our approach to long-term care? A major part of the problem is that existing long-term care programs are not a "system" at all but rather a hodgepodge of programs that were designed to meet health care and other needs, not long-term care needs.

The same sources who decry today's long-term care services produce similar lists of what a good system would look like: consumer-driven, community-based, social model, choices among least-restrictive options, affordable services, uniform access. And many argue that at least some of these goals can be obtained without massive infusions of new resources, although all maintain a larger slice of the resources pie is easily justified for this growing, vulnerable segment of the population.

Despite the general consensus about what is wrong and what the desirable end result is, little progress has been made toward restructuring long-term care services in California. Other priorities have occupied policy makers, including dealing with recession-wracked budgets, meeting the educational needs of a burgeoning school-age population and coping with growing incarceration costs.

However, as the economy grows stronger and resources begin to expand, the time may well be ripe to pay attention to some daunting demographics:

• In 1990, California had 4.2 million people 60 and older.
  
  
  • The State had the largest number of older people in the country.
    
    

  • About 10 percent of all older Americans lived in California.
    
    

  • Older citizens made up 14 percent of the State's total population.

• By the year 2040, California will have 14.1 million citizens who are 60 and older if current trends continue.
  
  
  • The State will continue to have the largest number of 60-plus citizens in the country.
    
    

  • About 16 percent of all older Americans will live in California.
    
    

  • Those 60 and over will make up 22 percent of the State's total population.⁽¹⁾

Although the fields of science and medicine continue to advance in the fight against disease and deterioration due to aging, there is little doubt that many of these older Californians will need long-term care services at some point in their lives.

In light of these statistics, the Little Hoover Commission has chosen to update and consolidate its prior efforts on long-term care for the elderly to assist policy makers as California moves into the 21st Century. The Commission's study has a double focus:

• The need for a fresh approach, invigorated leadership and restructuring of state functions to eliminate perverse incentives, lapses in coordination and gaps in services.
  
  

• The ongoing need to address long-term care issues that have existed for some time in the skilled nursing and the residential care industry and that should be resolved regardless of the outcome of any state bureaucracy restructuring efforts.

While recognizing that the disabled population often has interests similar to those of the frail elderly, the Commission has retained its historical focus on the needs of California's elderly citizens during the course of its study. The Commission, therefore, did not examine the broad spectrum of state services for the disabled.

Nonetheless, the Commission acknowledges that many representatives of both the disabled and the elderly are strongly supportive of an integrated system of long-term care services that responds to a person's abilities and level of need rather than age. In many instances, the findings and the recommendations in this report will satisfy the concerns of both groups.

The Commission began its study with a benchmark public hearing in February 1996 to review the status of skilled nursing facilities, residential care facilities and in-home care. A September 1996 hearing focused on the State's structure for oversight and community-based service options. Agendas for both hearings can be found in Appendix A.

An integral part of the Commission's study process was an active advisory committee, a body that doubled to almost 140 people (Appendix B) after an initial meeting of 70 advocates, experts and other interested parties laid out the parameters for the study. Dozens of members participated in 36 hours of working group sessions to explore issues concerning skilled nursing facilities, residential care facilities, personal care and long-term care overall.

In addition, the Commission reviewed academic literature, government reports and other documentation, as well as receiving input from dozens of citizens by phone, mail and Internet.

The result of the Commission's multi-pronged efforts is this report, which begins with a transmittal letter to the Governor and the Legislature and an Executive Summary. This Introduction is followed by a Background section that sets the context for discussion of specific findings. There are chapters for each of four findings: state structure, community-based services, skilled nursing facilities and residential care facilities. The report ends with a Conclusion, the Appendices and the Endnotes.

No demographic development is more definite than the massive explosion in the numbers of elderly over the next few decades. The bulging Baby Boom generation born between 1946 and 1965 will turn 65 between 2011 and 2030. Coupled with this growing geriatric population is an increase in the chronically disabled as medical miracles allow infants, children and adults to survive what were once deadly conditions -- premature birth, disabling head trauma, massive strokes.

That the demand for long-term care will increase is a certainty. How the State should respond is the question. The Commission hopes the following report will help shape the answer.