Independent Living Centers and Managed Care: Results of an ILRU Study
on the Current Level of Direct Involvement
1998
by Drew Batavia
Background
Since the beginnings of the independent living (IL) movement, independent
living advocates have been reluctant to establish formal relationships
with providers in the health care system. This reluctance is understandable.
The movement was established in the early 1970s largely in response to
the paternalistic way in which our society treated people with disabilities
under the so-called "medical model." The medical model, in which
the person with a disability is treated as a dependent patient who is
supposed to accept the orders of the physician authority figure, was internalized
by a society that was not accustomed to viewing people with disabilities
who were capable of living independently in their communities.
In the past 30 years, the world has changed dramatically in the way people
with disabilities are perceived and treated. The enactment of the Americans
with Disabilities Act of 1990 (ADA) demonstrates the movement's success
in changing the perceptions of our citizens and their representatives
in Washington concerning people with disabilities. The ADA signified that
people with disabilities are first class citizens deserving of respect
and capable of autonomy. This is not to suggest that the medical model
has been eliminated from our society. However, there has been a remarkable
reversal in the status of people with disabilities since the 1970s. Another
significant change has been far less favorable for people with disabilities
over this period of time. In the early 1970s, the health care system was
still in a stage of expansion of eligibility and benefits. By the 1980s,
and particularly the 1990s, health care costs were escalating rapidly,
triggering a revolution of cost containment initiatives and growth of
managed care. Just as the expansion tended to
benefit people with disabilities, who on average have higher health care
needs and costs, the subsequent contraction appears to have adversely
affected many people with disabilities.
Managed Care and Disability
Managed care organizations (MCOs) include health maintenance organizations
(HMOs), preferred provider organizations (PPOs), and other types of organizations
that integrate the provision and financing of services. Although there
is little firm empirical evidence on whether or not managed care has harmed
people with disabilities, there have been many anecdotal accounts of care
not provided or not provided adequately by managed care providers. Many
people with disabilities are very concerned about access and quality of
care in managed care organizations. Despite these changes, many independent
living advocates maintain the traditional avoidance of interactions with
the formal health care system. Although they have been involved in health-related
issues, such as access to personal assistance services, they have not
chosen to become involved in collaborations with health care providers.
However, other advocates have chosen to cast aside the old views and develop
such collaborative relationships. Recognizing this phenomenon, ILRU sponsored
a study to determine the extent to which independent living centers have
become directly involved in health care issues.
The Independent Living Center/Health Care Study
The 116 independent living centers that responded to the survey indicated
that they encounter an average of nine complaints per month from consumers
about their inability to receive health care services that meet their
needs. This constitutes about nine percent of the average of 96 information
and referral contacts that centers receive monthly concerning all issues,
including health care. The average number of persons served by each center
annually is 468.
In assessing the types of complaints received, the centers indicated
the following: 26.7% related to access (defined as inability to receive
services for reasons other than financial, such as physical accessibility
of the health care facility); 23.7% related to cost/finance (defined as
inability to pay for health care services or to have insurance or HMO
pay for such services on the individual's behalf); 11% related to quality
of care; and 28.7% related to other concerns. On average, the centers
estimated that 63.2% of complaints were specifically disability-related
(as opposed to complaints that may also be voiced by non-disabled people).
This study suggests that people with disabilities continue to experience
problems in gaining access to health care services that meet their specific
needs and in successfully resolving complaints with their managed care
providers. Approximately nine percent of all complaints raised to independent
living centers concern health care issues. If such centers, which tend
to be relatively small organizations with limited resources, are receiving
an average of almost nine complaints per month from their consumers, this
is probably only the "tip of the iceberg" concerning the problem
for people with disabilities.
Almost two-thirds of the complaints heard by the responding centers related
specifically to disability issues. This finding is consistent with the
extensive research concluding that our health care system has not adequately
addressed disability-related concerns, such as ensuring that providers
are adequately aware of secondary conditions of people with disabilities
(e.g., pressure sores, urinary tract infections, respiratory infections,
and scoliosis). Research has identified the need to educate physicians
about the health care needs of people with disabilities.
While 86 of the responding centers (74%) intervene on behalf of consumers
before health care organizations, only 4 centers (3%) indicate they have
a formal policy for addressing health care complaints, and 15 centers
(13%) say they have been involved in the actual provision of health care
through employment of a health professional, establishment of a health
care subsidiary, or development of an affiliation with a health care organization.
Centers have been involved in a broad array of health care-related activity
summarized below. Two centers in Wisconsin have been particularly innovative
in establishing separate organizations for the actual provision of managed
health care services to their clients and other people with disabilities.
Centers Involved in Health Care Issues
Those centers that indicated that they are involved in health care issues
discussed
the following areas of involvement:
- handling administrative functions in a Medicaid personal assistance
services program, such as arranging for payment of personal assistants,
worker's compensation, and payment of taxes;
- assisting Medicaid recipients with disabilities in transitioning to
a state's new
program in which all recipients must be enrolled in a managed care plan;
- operating a consumer education center concerning managed care under
a new
managed care system;
- serving as a point of contact where consumers could learn how and
where to state complaints about their managed care organizations;
- working to influence health policies that affect its clients with
disabilities, such as informing a state that all providers under its
Medicaid managed care program must comply with the ADA, including requirements
for physical and communication access;
- initiating a dialogue between the disability community and managed
care providers to inform the organizations about the needs of people
with disabilities;
- attempting to affect the definition of medical necessity under a managed
care
program to ensure that it included the concept of functional necessity,
and working with a health care coalition to enact the state's Consumer
Bill of Rights;
- providing training on the needs of people with disabilities including
development
and dissemination of training materials, both for managed care professionals
and consumers with disabilities, including a consumer checklist on managed
care issues;
- educating consumers on the advantages of having an advance directive,
such as a living will or a durable power of attorney, to ensure that
their wishes will be
honored in the event of a catastrophic illness or injury that renders
the individual
unconscious or otherwise unable to communicate their desires;
- providing an information and referral packet to any consumer who requests
information concerning home health services or personal assistance services,
including the names and phone numbers of local agencies and individuals
providing such services;
- assisting its consumers to advocate for themselves before managed
care
organizations;
- participating in health care forums for the purpose of voicing the
concerns of
people with disabilities at the center;
- providing advocacy services on behalf of its consumers before the
various
managed care plans that provide health care services under the program;
- establishing a relationship with a large HMO, in which a contact person
was
identified within the plan to discuss any issues that may arise concerning
service to persons with disabilities;
- participating on a Technical Assistance Committee that developed a
document to assist consumers in selecting a managed care plan;
- engaging in policy advocacy at the county level on behalf of its consumers
who
receive In-home Health Support Services, the program for personal assistance
services in the state;
- assisting its consumers with eligibility and coverage issues under
Medicaid and
Medicare, including helping individuals to fill out the necessary application
forms
and to file appeals if denied eligibility;
- helping individuals to appeal denials of coverage of specific requested
services;
- serving as an interface with the organization that operates the Medicare
HMO
program in the state, which allows enrollees to receiving a broader
array of benefits than are available under the traditional Medicare
program;
- providing education and advocacy with respect to health care services,
and if
needed, a staff member accompanies consumers on appointments to a health
care provider or facility;
- providing technical assistance to managed care organizations in the
state in
ensuring the accessibility of services at these organizations, including
sensitivity training related to disability;
- administering a smoking cessation program for people with disabilities;
- employing a consultant registered nurse and an occupational therapist
to
evaluate its consumers through a needs assessment for purposes of determining
the amount of personal assistance services they may receive under Medicaid;
- establishing a for-profit subsidiary durable medical equipment company,
that is
wholly owned by the center;
- participating in a health and wellness program developed by the state
university
that is focused on independent living outcomes;
- ensuring that a state's new managed care program for people with disabilities
under Medicaid will not discriminate against individuals with disabilities;
- serving as a fiscal intermediary for its state's personal assistance
services program under Medicaid;
- assisting in the development of a class action law suit against a
new quasi-
governmental agency created to coordinate managed care for people with
disabilities who are on Medicaid; and
- providing services as a home health agency, including a wide array
of health care and personal assistance services.
The Wisconsin Program
Two independent living centers participate in the Wisconsin Partnership
Program, and are among the very few centers in the country that have actually
been involved in establishing providers of health care services for people
with disabilities. The Wisconsin Partnership Program is a comprehensive
program of integrated health care and long-term care services for people
who are elderly or disabled, Medicaid-eligible, and eligible for the Medicaid
level of care requirement. Participation in the program is voluntary,
and the program's goals are to improve quality of care while containing
costs, reducing inefficiency in the system, and increasing the ability
of people to live in the community and to participate in decisions regarding
their health care.
The program was structured to allow qualified community-based organizations
to enter into a Medicaid managed care contract with the Wisconsin Department
of Health and Family Services. Contracting organizations receive a monthly
"capitation payment" from the state for every enrolled person
with a disability. A capitation payment is an amount of money that a managed
care plan receives in exchange for providing all care covered under the
plan. In this program, the individual's long-term care and most acute
care, including physician services, is paid out of the capitation payment.
The organization then is responsible for the care of each person regardless
of provider or service setting (e.g., home, hospital or nursing home).
Those organizations that participate in the program have agreed to function
effectively as health maintenance organizations, and accordingly are placed
"at risk" financially for the individuals enrolled. This means
that, if they contain costs within the capitation payment, they receive
a profit; if costs exceed the capitation payment, they incur a loss. Some
financial protection is provided through "reinsurance," an insurance
policy that organizations may purchase to protect themselves in the event
that the enrolled population experiences an unusual level of health problems
in any particular year.
Currently, the program is being implemented on a demonstration basis
at four sites. One site is enrolling people with physical disabilities
between the ages of 18 and 64. Two sites are enrolling frail elderly people,
and the fourth site is enrolling both young physically disabled people
and frail elderly people. Two independent living centers have been key
participants in the process of implementing this program.
Access to Independence Center
This center established Community Living Alliance, Inc. (CLA), as a
not-for-profit offshoot corporation which provides health care services
to people with disabilities ages 18 to 64 under a grant from the Robert
Wood Johnson Foundation and under Medicaid waivers. The center decided
to create a legally- and organizationally- separate entity in part to
avoid any potential conflicts of interest. In other words, this arrangement
in which CLA is an entirely independent organization allows the center
to provide advocacy services to its consumers unencumbered by either a
financial relationship or organizational loyalty to CLA.
Currently, CLA provides services to a maximum of 300 eligible people
with disabilities and is partially capitated with the state bearing part
of the risk. A founding precept for CLA was that it should embody many
of the tenets of consumer-control that are the foundation of the independent
living philosophy. The following are several examples of this commitment:
- the CLA mission and by-laws were developed by consumers with disabilities;
- the CLA by-laws promote consumer control by requiring that a majority
of people on the board of directors be people with disabilities;
- CLA uses ongoing focus groups, listening sessions and member training
sessions to get ongoing member input on services;
- CLA is developing an active membership of people who receive services,
and
members directly elect representatives to the CLA board;
- the CLA provider network is designed based on consumer preferences
for
providers;
- consumers serve on the grievance committee of CLA;
- CLA consumers and outside advocates constitute a majority of that
body;
- CLA is developing an "ethics" body (a Medicaid requirement
for HMOs) that will
also have consumers on it; and
- CLA provides independent advocacy services to all members who require
assistance in grieving a CLA action, both internally and to funding
sources.
Center for Independent Living for Western Wisconsin
This center is based in a rural area of the state that has limited health
care services available. Like the Access to Independence Center which
is based in a more urban area, it is also in the process of establishing
a off-shoot organization to provide services under this demonstration
program. The new organization will provide services to a population that
includes both younger people with disabilities (ages 18-65) and older
people with disabilities (ages 65 +).
Should Independent Living Centers Be Involved in Health Care?
The finding that an increasing number of centers are intervening on
behalf of their consumers who raise health care complaints is not surprising.
Independent living centers exist largely to advocate on behalf of the
independent living needs of consumers. Health care concerns clearly interfere
with the goal of living productively and independently in the community.
However, relatively few centers have gone beyond basic advocacy with respect
to health care issues. Of the 116 centers participating in this study,
only four centers indicate that they have developed a formal policy or
protocol for addressing health care complaints, and only 15 have been
involved in some way in the actual provision of health care services.
Again, this is not unexpected. Independent living centers were not established
to be health care providers and are not particularly well-equipped to
serve in this capacity. Those centers that have entered these uncharted
waters generally have done so in response to necessity, and at the risk
of disapproval from members of the independent living community. They
have developed some innovative models which other centers may borrow or
adapt to address their particular circumstances.
Many of the centers that have been involved in health care issues have
been subject to criticism by members of the independent living movement,
who have both ideological and practical concerns about such involvement.
Specifically, the critics are concerned over the traditional paternalistic
treatment of people with disabilities by health care professionals under
the "medical model" of care, as well as about actual abuse and
neglect in some health care institutions. They argue centers that are
too closely affiliated with health care providers have a conflict of interest
and are not able to advocate for their clients rigorously. The centers
involved in health care issues respond that they structure their provider
relationships so as to avoid conflicts of interest. Moreover, they argue,
if they do not fill the void, no one will meet the health care needs of
their consumers with the knowledge and sensitivity that they can provide.
Conclusions
There is much validity to the concerns of independent living advocates
over the treatment of people with disabilities by the health care system
historically and over the medical model of caring for people with disabilities
in particular. However, we must not confuse legitimate concerns about
the health care system with counter-productive concerns about becoming
more involved in the system. In fact, the system's many problems suggest
that independent living advocates should become more involved. For this
reason, it is now an appropriate time to reconsider the role of independent
living centers in health care issues. Particularly in light of growing
evidence that many MCOs are not adequately meeting the needs of people
with disabilities, strong advocacy and perhaps direct involvement by independent
living centers may be necessary to ensure that their consumers have access
to the quality care they need under the models of care they prefer.
Independent living centers and their advocates have many options concerning
their potential involvement in addressing health care issues and in interacting
with the health care industry on behalf of their consumers. Certainly,
the movement should never accept the paternalism with which the health
care system has traditionally treated people with disabilities under the
medical model. However, it also should not attempt to deny to the world
the obvious fact that people with disabilities need health care services
and many need access to such services even more than people without disabilities.
In particular, the independent living community should not refuse to
deal with a health care system that is increasingly failing to meet the
needs of people with disabilities. Centers that have become involved in
health care issues should at least be given the benefit of the doubt in
attempting to address the needs of their local consumer populations. They
argue that they are not embracing the traditional health care system or
the medical model, but are attempting to change the system by developing
new models that meet the unique needs of their consumers. This approach
appears to be in the best tradition of the independent living movement
and independent living centers--to attempt to modify the surrounding environment
to become more accessible to people with disabilities.
In determining the next step concerning the independent living movement
and health care, independent living advocates should ask themselves three
questions: Is the health care system, which is now dominated by managed
care organizations, adequately meeting the needs of people with disabilities
in their communities?
If not, should there be intervention to ensure that the health care
system generally, and managed care organizations in specific, meet the
needs of people with disabilities in their communities?
If so, who can achieve this goal better than independent living centers?
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