Almost 13 million Americans have chronic health problems that
require long-term care -- 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 expensive
institutional care before necessary. The magnitude of the problem is
large: California spends more than $5 billion on long-term care services
for fewer than half of the 1.5 million people who need assistance.
focuses on managing on-going conditions over time.
Services may include medical assistance, such as administering
medication or performing rehabilitative therapy. But more typically it
involves personal care, such as help with bathing and eating, and
supervision, such as protecting a person from wandering away or
inadvertantly injuring themselves. The emphasis of long-term care is onenhancing a person's ability to function and enjoy a quality of life rather
than on curing a condition. It takes place in a variety of settings -- in
homes, in institutions, in community programs -- and is provided by a
variety of caregivers -- licensed health care professionals, trained
workers, family and friends.
As the Baby Boom generation 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.
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.
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. That the demand for long-term care will increase is a
certainty. How the State should respond is the question. The following report
is designed to help policy makers shape the answer. It's findings are:
Finding 1: The present state structure for long-term care oversight
is not conducive to a coordinated continuum of care and fails to
focus state efforts on consumer-centered, least-restrictive, best-value
A person in need of long-term care faces a bewildering maze of policies,
bureaucracies and programs. Strictly regimented funding streams and
fragmented service programs skew decisions toward high-cost, less consumer-desired solutions. Although the State Plan on Aging describes a coordinated
continuum of care options that strives to keep consumers in their homes and
communities, the State's segmented structure for overseeing long-term care
frustrates the implementation of this federally required plan. The result is
consumer confusion, costly choices and premature erosion in the quality of life
for many individuals. At a time when the population most likely to need long-term care services is expanding rapidly, the State can ill afford to maintain its
Recommendation 1-A: The Governor and the Legislature should
consolidate the multiple departments that provide or oversee long-term
care services into a single department.
Interdepartmental cooperation is a hit-and-miss proposition that usually lacks
mission unity and aggressive leadership. If the State is serious about creating
an effective long-term care system -- and with looming demographics that
promise an explosion of those who need such care, the State should be
concerned about that goal -- then it must reorganize departments into a single
entity to oversee all long-term care. The new department should take
advantage of the opportunities presented to create a consumer-centered
philosophy that maximizes choice, effectiveness and efficient use of multiple
Recommendation 1-B: The Governor and the Legislature should
mandate that the new state department establish an effective one-stop
service for consumers to obtain information, preliminary assessment
of needs and referral to appropriate options.
What consumers have identified repeatedly as their most pressing need is a
reliable source of information so they may understand the choices that are
available to them. While the State has the backbone for such a system in place,
with the 33 regional Area Agencies on Aging and a special 1-800 number, the
resources are not available for personalized, one-stop counseling. In particular,
the ability is lacking to access information about programs and individuals by
computer so that counseling is person-specific. Over time, as the State makes
progress on integrating programs, these referral centers should also serve as
program entry points, with unified applications and common eligibility screening.
Recommendation 1-C: The Governor and the Legislature should
require departments involved in long-term care to pursue federal
waivers and options that will infuse flexibility into programs and
The State has been slow to embrace opportunities to escape federal
micromanagement, lagging behind other states in applying for and winning
waivers. Although the process for securing waivers is lengthy, it is an
investment the State must make if it is to create a long-term care system that
focuses on consumer needs rather than one that is driven by artificial -- and
often conflicting -- program constraints. Waivers are also a key tool for shifting
long-term care services away from high-cost medical models to consumer-preferred, lower-cost community-based social models of care. Specific
examples include Wisconsin's cash-and-counseling program, Oregon's targeted
removal of people from skilled nursing facilities, and further replication of the On
Lok and Social Health Maintenance Organization models.
Recommendation 1-D: The Governor and the Legislature should
adopt a multi-pronged strategy for coping with the expected rising
demand for and cost of long-term care services.
As the economy expands and state revenues increase, policy makers should
give serious consideration to enlarging allocations for long-term care services.
But there are other steps that would stretch resources, including further
stimulation of the purchase of private long-term care insurance through tax
credits; more effective educational outreach about people's financial options for
the future; and elimination of program incentives that favor high-cost services.
Recommendation 1-E: The Governor and the Legislature should
ensure that the State's policies are consumer-focused by establishing
an advisory committee that can have a persuasive voice in policy
formation, program implementation and quality assurance.
Consumers who actually use long-term care services can provide valuable input on what components are needed to make an effective system. They also can ensure that the focus of both policy and programs remains on the consumer and not on the convenience of bureaucracy. One option is to convert the existing California Commission on Aging to a body that includes consumers of long-term care services and to provide it with adequate resources to work closely with the restructured, single department in charge of long-term care services.
Recommendation 1-F: The Governor and the Legislature should develop
a program for quality assurance and control that is outcome-based and
consumer-oriented rather than prescriptive and process-oriented.
Policy makers should take several steps to shift oversight from a prescriptive
system to an outcome-based system:
In addition, policy makers should focus on improving accountability and
credibility for the State's oversight functions. Two possible steps:
Finding 2: The State's policies and programs do little to encourage
the use of community-based services, and too small an effort is made
to protect people from premature deterioration that can result in
costly institutional placements.
In many areas of state concern, prevention is an investment that saves long-range costs -- but prevention rarely wins priority over reactive services when
resources are limited. In the case of long-term care, the bulk of government
dollars is spent on institutionalization, and preventive services that would keep
people out of high-cost institutions are stretched thin. Statutes are in place that
favor community-based care, and exemptions and waivers for licensing
regulations provide limited tools to keep people in home-like environments. But
by and large, the state bureaucracy blocks rather than enables community
solutions, and policy makers provide little financial support for preventive
programs. Programs that have proven their worth but that suffer from financial
Recommendation 2-A: The Governor and the Legislature should revamp
the present highly segmented licensing structure for long-term care
service providers to allow a more seamless delivery of service, to allow
aging in place whenever possible and to emphasize social models over
Creating a unified licensing plan that would allow service providers to add-on
optional services or provide various types of care in a single setting is a key
requirement for moving long-term care toward integrated, consumer-focused
service. Those who fear the consolidation of the existing separate licensing
systems should have their concerns addressed by requiring any new system to
be outcome-based, flexible in implementation, consistent in interpretation and
supportive of social models of service delivery. Barriers raised by federal
funding and oversight requirements for skilled nursing facilities should be
addressed through waivers, demands for federal law reform or, if no other
course is feasible, separation from other forms of long-term care licensing.
Recommendation 2-B: The Governor and the Legislature should
designate a point person to develop funding streams and provide technical
support for adult day care and adult day health care programs.
These programs can play a critical role in providing relief for caregivers and
increasing the number of functionally impaired people who can remain at home
and out of costly institutions. The State should provide leadership in securing
Medicare reimbursement for services by pushing for changes in federal law and
waivers. In addition, the State should focus on educating the public about the
services available and enhancing the opportunity for development of more
Recommendation 2-C: The Governor and the Legislature should increase
funding for family caregiver respite and support services.
For more than a decade, the Caregiver Resource Centers have documented their
value in providing services that allow people with brain impairment to remain
home and under the care of family and friends. But funding constraints have
kept the waiting lists long, limiting this program's ability to serve as a safety net
for the long-term service continuum of care. The California Senior Legislature,
which has the responsibility of proposing laws to assist the State's seniors, is
backing a statewide respite care program as one of its priorities for 1997.
Expanding the existing program would meet their goals.
Recommendation 2-D: The Governor and the Legislature should
encourage counties, through funding and other incentives, to form Public
Authorities to improve delivery of services under the In-Home Supportive
The problems with the In-Home Supportive Services program have been well
documented and widely acknowledged for years. Improvements have been non-existent, due to lack of funding and governmental abhorrence to becoming
involved to a point of being named the employers of caregivers. The Public
Authority mechanism, while largely untested, has the ardent support of
consumers as a means of improving the quality of care. This mechanism should
be given every opportunity to succeed.
Recommendation 2-E: The Governor and the Legislature should require
counties to provide multiple modes of services so In-Home Supportive
Services recipients who do not want to act as employers have options,
including care through agencies, that will meet their needs.
While many IHSS recipients want to retain control over their service provider
choices, others neither desire nor can handle the role of employer. Just as
recipients who want to be employers should have that choice, recipients who
need management assistance for their caregivers should not be left without a
program to meet their needs.
Recommendation 2-F: The Governor and the Legislature should increase
funding and expand the state role in standardizing adult protective
services throughout the state.
Society needs an effective mechanism for protecting people who are
functionally impaired and threatened with abuse, neglect or exploitation. The
present county-administered programs are not uniform throughout the state and
lack the resources to provide effective service. The California Senior Legislature
has made increasing the funding and effectiveness of this program, as well as
enhancing elder abuse prevention and treatment programs, as two of its top 10
priorities for 1997.
Recommendation 2-G: The Governor and the Legislature should clarify
mandated reporting laws to turn them into a more effective tool for
protecting vulnerable citizens.
Mandated reporting laws vary with regard to what should be reported, by
whom, to whom and what resulting action is required. Providing uniformity to
this system would make it more understandable both to those who are required
to comply with the provisions and those who are seeking protection from them.
Finding 3: Federal mandates for skilled nursing facilities have
brought an improved process to monitoring quality of care -- but
many previously identified issues remain unresolved and others are
developing as the role of these institutions shifts to a higher level of
Under recently issued federal regulations, skilled nursing facilities (SNFs) are
judged by their ability to provide the least restrictive, most socially
stimulating environment that a person's condition, desire and needs allow. The
State's process of holding SNFs to this standard holds great promise. But many
of the problems identified in previous Little Hoover Commission reports continue
to exist and have immense negative impact on people's lives. As the role of
SNFs shifts more from long-term custodial care for chronically ill people to short-term rehabilitative care for recently acutely ill people, the State has an
opportunity to recast the policies and programs that make these institutions the
most costly, least consumer-desired long-term care option.
Recommendation 3-A: The Governor and the Legislature should take
steps to move medical care in long-term care settings from the costly
reactive model to the more economical, preventive model, including
encouraging the use of allied health professionals when appropriate.
There is little value in protecting the turf of professionals who do not want to
provide service in a long-term care setting but who are loathe to see their
competitors gain a foothold. Allied health professionals, such as dental
hygienists, nurse practitioners and physician assistants, can play a valuable role
in providing preventive health care and alerting the appropriate professionals to
the needs of residents in skilled nursing facilities. They should be given the
opportunity to do so.
Recommendation 3-B: The Governor and the Legislature should
strengthen the opportunities, incentives and requirements for high quality
performance by skilled nursing facility staff.
It is difficult to operate effectively in a setting that is understaffed, has
incomplete or inadequate training and provides no opportunity for advancement.
The following steps would address those concerns:
Recommendation 3-C: The Governor and the Legislature should enhance
the State's enforcement capability by eliminating counterproductive
provisions in the citation and fine system, directing more frequent use of
alternative tools and creating a more effective civil liability remedy.
Specific steps that policy makers should take include:
These and similar reforms are supported by the California Senior Legislature in
its 1997 list of priorities and the California Advocates for Nursing Home Reform.
Recommendation 3-D: The Governor and the Legislature should create a
more responsive complaint investigation and resolution process that is
separate from the licensing and technical advice function.
The reality is that the Department of Health Services is neither adequately
funded nor staffed to be responsive to consumer complaints -- and the
perception is that their interest is more aligned with encouraging industry to
comply than providing aggressive enforcement. In addition, the current process
is heavily weighted toward due process for industry rather than adequate
concern for consumers. Restructuring the process and placing it at some
distance from the licensing function -- such as at the Attorney General's Office
or in the Department of Consumer Affairs -- would address these issues. This
reform could be tracked and assessed for effectiveness over time.
Recommendation 3-E: The Governor and the Legislature should
eliminate duplicate regulations and streamline the oversight process while
ensuring that no deterioration in the quality of care occurs.
It is counterproductive to have more than one set of regulations governing an
industry and to layer complexity with redundancies. Regulations should be
focused on outcomes, allow for flexibility of methods, lend themselves to
consistency of interpretation and be easily understood by industry, consumers
and state workers.
Finding 4: Regulatory changes have not kept pace with the changing
role of residential care facilities.
Residential Care Facilities for the Elderly (RCFEs) are a consumer-favored
option for long-term care because of the home-like setting, lower cost and
individual freedom provided. Although conceived as a non-medical approach to
long-term care, their function has grown increasingly complex as residents have
been given the right to remain in place with greater and greater need for care.
While new regulatory categories have been added piecemeal to broaden the role
of RCFEs, no comprehensive re-examination of where this service fits in the
long-term care continuum has occurred. But as a key service that can keep
people from premature institutionalization and foster at least partial
independence, RCFEs deserve attention and reform that will support expanded
availability to people with long-term care needs.
Recommendation 4-A: The Governor and the Legislature should
restructure state policies regarding RCFE rates.
With market forces driving prices for 70 percent of the residents in RCFEs, state
policies to artificially suppress rates for SSI/SSP recipients have had
counterproductive affects, including lack of access. In addition, many people
who are not poor enough for SSI/SSP benefits but too poor to pay $1,500 a
month are left with no options for out-of-home care other than expensive skilled
nursing facilities. Policy makers should take several steps:
Recommendation 4-B: The Governor and the Legislature should revamp
the regulatory structure for RCFEs.
An earlier recommendation calls for the complete restructuring of licensing to
allow more flexibility and integration of long-term care services. This is
particularly true for RCFEs, which would benefit from regulations that are size-specific and that more easily accommodate add-on services to a core package
of basic care.
Recommendation 4-C: The Governor and the Legislature should
encourage more clarity and consistency in enforcement efforts by
dedicating more resources to staff training and enhanced technical
Fairly enforcing regulations that avoid micromanagement and encourage
innovative approaches requires state staff who are trained and kept abreast of
state-of-the-art developments in long-term care. And the potential for high
quality of care is enhanced by sharing with facilities the State's expertise on
best methods and practices for complying with regulations.
Recommendation 4-D: The Governor and the Legislature should revise
restrictions on RCFE medication practices while at the same time
safeguarding consumer protections.
The elderly are a population that is already at risk for over-medication and
incorrect usage of medication. But a system that requires event-by-event phone
calls to physicians for permission to provide residents with over-the counter
cough medicine and aspirin seems to serve no one's best interests.
Recommendation 4-E: The Governor and the Legislature should couple a
strengthened process for protecting residents from unwarranted evictions
with the creation of a limited probation period when a resident can be
asked to move without cause.
While residents should be protected from summarily being forced from a facility,
RCFEs also should have tools at their disposal to ensure that residents can live
Recommendation 4-F: The Governor and the Legislature should request
that the federal government restructure its health information collection
process to include specific data on residential care facility residents.
The federal government should be encouraged to use the Census process to collect data on people who live in different types of out-of-home arrangements. In addition, the federal government's American Housing Survey suffers from the problem of lumping together everyone who lives with more than five unrelated people (including college dorms and half-way houses) rather than examining information by specific categories.
There is little mystery about what an effective, consumer-preferred long-term care system would look like. For years, if not decades, advocates
have described a continuum of care that would provide freedom of choice
and the least-restrictive type of assistance as a person moves from
independence to assisted living to total dependence. Unfortunately, there has
been little progress toward such a system.
The Little Hoover Commission believes the timing of this report -- which
synthesizes the best-practices trends across the nation -- should enhance the
opportunities for reform. The State has already taken good-faith steps toward
a home- and community-based ethic of long-term care by creating an integrated
services pilot project for five areas of the state and revising the Older
Californians Act. The State can continue down this path by providing the
oversight structure and leadership to nurture these initial steps.