|
The Role of Independent Living Centers in
Meeting
the Health Care Needs of People with Disabilities
Spring 1999
Independent Living News
Andrew
I. Batavia, J.D., M.S.
Associate Professor
School of Policy and Management
College of Urban and Public Affairs
Florida International University
North Miami, Florida
Introduction
Studies indicate that people with disabilities have great difficulty
in gaining access to adequate primary and secondary care.
There are several facets to this problem. Disabled people,
as a group, have higher-than-average health care costs and are considered
a high-risk group. Consequently, they face insurance policies
that systematically attempt to exclude them or to reduce the value
of their benefits, such as preexisting condition clauses, coverage
exclusions and benefits caps. Many providers of health care
services are not adequately familiar with the health care needs
of people with disabilities and, as a consequence, most are not
equipped to meet such needs.
Independent living centers are community-based organizations directed
by and for people with disabilities. Until recently, these
service and advocacy organizations have not been heavily involved
in health care issues. However, in recent years, increases
in cost pressures have increased the concerns of many people with
disabilities about their ability to access quality health care.
This article presents the results of a survey to determine whether
or not independent living centers are being confronted with such
concerns, and if so, how they are responding to them.
Disability in the Age of Managed Care
The advent of the managed care revolution raised some uncertainty
as to how people with disabilities would be treated by emerging
managed care organizations (MCOs). Some optimists were hopeful
that such organizations, based on the concepts of early prevention,
detection and treatment, and enhanced coordination of care in a
comprehensive, integrated system, would result in improved care
for many people with disabilities. This probably has occurred,
to some extent, for those disabled people who are fortunate enough
to be enrolled in a high-quality health maintenance organization
(HMO) or preferred provider organization (PPO), possibly through
employment or through Medicare or Medicaid managed care program.
In fact, some managed care organizations have been established
specifically to manage the care of people with disabilities or chronic
conditions. These organizations, often known as social health
maintenance organizations (SHMOs), generally are sponsored by a
public entity, such as one or more agencies of the federal and state
governments, and typically receive a relatively high premium reflecting
the high average costs of their target population. There is
no single model for these specialized managed care organizations,
and each one has fairly unique characteristics devised to meet the
needs of its target population. Several have developed to
the point of being able to provide high quality services to people
with disabilities.
However, overall, those who predicted that the predominance of
managed care would be harmful to the disabled population appear
to be correct. Their predictions were based largely on the
economic incentives of managed care organizations, which are to
enroll a low-risk population to the extent possible (a process known
as "preferred risk selection") and to maximize profits by reducing
costs to the extent possible. For unscrupulous managed care
organizations, one of the most effective ways in which to achieve
these goals is to discourage people with disabilities from enrolling
and to limit the services available to people with disabilities
who enroll.
A Study of IL Center Intervention in Health Care
Traditionally, independent living centers have not focused seriously
on health care issues. This is in part a result of the ideological
opposition of the broader independent living movement to the medicalization
of disability. Under the "medical model" of disability,
people with disabilities are treated paternalistically as dependent
patients rather than as self-directed individuals fully capable
of autonomy.
Founders of the independent living movement established the "independent
living model" in the early 1970s as a reaction to the medical model.
From the outset, interactions with the medical field were avoided.
This hard line has weakened somewhat in recent years as a result
of the importance for people with disabilities of national debates
on national health insurance, physician-assisted suicide, and regulation
of managed care organizations.
Although independent living centers are the primary administrative
agents of the independent living movement, and are therefore strongly
influenced by the philosophy and politics of the movement, they
are also local organizations with a mission to meet the needs of
their clients with disabilities. They have, therefore, been
pulled in opposite directions in making policy decisions concerning
health care issues.
A few leaders in the independent living movement have strongly
endorsed an active role for independent living centers and disability
rights advocates generally in the areas of health and health care.
June Kailes, a long-term leader in the movement, has written:
"Independent living centers and other disability-related organizations
must play a key systems advocacy and educational role in health
promotion activities for people with disabilities, given health
promotion's importance in our longevity and survival."
This raises the empirical question, to what extent are independent
living centers intervening in the health care field on behalf of
the people they serve. The purpose of this study was to determine
the extent to which people with disabilities have been presenting
health care concerns to independent living centers and how the centers
have been responding to such concerns. Possible interventions
range from advocacy before managed care organizations and other
insurers to development of affiliations with health care providers
to direct provision of health care services (assuming that all licenses,
certificate of need requirements and other regulatory obligations
can be satisfied).
In addition to presenting survey results, this report documents
several innovative approaches that some centers have taken in response
to their consumer's health care concerns. Some centers
have established health promotion or health care advocacy programs.
Several centers have been actively involved in providing technical
assistance to their state's managed care program and/or personal
assistance services program for people with disabilities.
Two centers in Wisconsin have been particularly innovative in establishing
separate affiliated organizations for the actual provision of managed
health care services to their clients and other people with disabilities.
Survey Methodology and Results
Target Population and Survey Instrument
A one-page survey questionnaire was mailed to the director of each
of the 355 independent living centers in this country. The substantive
objective of the survey was to determine the extent to which independent
living centers are being confronted with health care issues and
the extent to which they are attempting to address such issues.
The investigator followed up with a telephone call to all centers
that responded affirmatively to either question 1, which asked whether
the center has a formal policy or protocol for addressing the health
care concerns of their consumers, or to question 8, which asked
whether the center has been involved in any way in the actual provision
of health care services through employment of a health care professional,
establishment of a health care subsidiary, or development of an
affiliation with a health care organization. Through
in-depth interviews, these centers described their health care policies,
protocols, or programs.
Survey Results
Of the 355 surveys distributed to independent living programs nationwide,
the investigator received 116 returned questionnaires (i.e., response
rate = 33%). Although the low response rate may limit the
extent to which we can generalize results to all independent living
centers, the survey responses provide a good assessment of the experience
of a significant number of centers
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 mobility 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). The percentage
of complaints relating specifically to HMOs or other managed care
plans was 20.6%.
Of the 116 responding independent living centers, 86 centers (74%)
indicated that they intervene on behalf of consumers before health
care organizations. However, only 15 centers (13%) stated
that they are involved in any way in the actual provision of health
care services. Only four centers (3%) indicated that they
have a formal policy or protocol for addressing the health care
complaints of their consumers.
Follow-up Interview Results
Centers with Policies, Protocols or Direct Provision of Care
Follow-up discussions were conducted with a number of centers that
indicated in the survey that they have been actively involved in
health care issues. The investigator attempted to contact
a representative of each center that stated that it has a policy
or protocol or that it has been actively involved in the provision
of health care services. Almost all of these centers agreed
to, and participated in, in-depth interviews concerning the specific
nature of their policies and/or interventions. In addition,
the investigator conducted similar interviews with a few centers
that did not respond to the survey, but that were known in the field
for their involvement in health care issues.
Overall, these in-depth interviews suggest that independent living
centers that have been involved in these issues generally regard
addressing the health care concerns of consumers as part of their
mission to the same extent as other problems, such as access to
housing, personal assistance, and transportation. In this
regard, they attempt to teach self-advocacy and to provide advocacy
services before health care plans and agencies to the extent necessary.
However, only a few centers identified health care issues specifically
as an area of focus for their services.
The following are summaries of the interviews with centers that
have been involved in health care issues. Please note that
the summaries include only those centers that the investigator was
able to reach and interview after several attempts, and not every
center that has been involved in health care issues or even every
center that indicated it has been involved in such issues.
The summaries also do not necessarily include all of the health
care issues that these centers have addressed, only certain key
issues emphasized by the center's contact person for health care
issues.
Resource Center for Independent Living of Osage City, Kansas
The State of Kansas has the personal assistance services program
under its Medicaid program, whereby certain people with major disabilities
who would otherwise be institutionalized may live in their communities
and have their personal assistance services paid for by the state.
This center serves as a payor agent on behalf of the state in handling
administrative functions such as making arrangements for payment,
worker's compensation, and payment of taxes.
Independence Now of Silver Spring, Maryland
This center received a grant from the state's health department
to assist Medicaid recipients with disabilities in transitioning
to the state's new system in which all recipients must be enrolled
in a managed care plan. The center operated under this grant
primarily as a consumer education center concerning managed care
and the new system. It sponsored group educational forums
throughout the state on the new system. It assisted those
consumers who requested assistance in the enrollment process.
Finally, it served as a point of contact where consumers could learn
how and where to state complaints about their managed care organizations.
Although this center's grant has expired, as a matter of policy
and practice, it continues to provide information to consumers and
to advocate on their behalf before managed care organizations.
Vermont CIL of Montpelier, Vermont
This center has been involved in health care issues at several
different levels. At the broadest level, it has worked with
the state to influence health policies that affect its clients with
disabilities. For example, when the state enacted a new program
that would require all people with disabilities who are on Supplemental
Security Income (SSI) to enroll in a qualified HMO under its Medicaid
program, this center informed the state that all providers under
the program must comply with the Americans with Disabilities Act
(ADA), including requirements for physical and communication access.
This intervention effectively delayed implementation until the state
conducted a health access survey, and ensured that the program and
its providers were in compliance with the ADA. This center
also attempted to affect the definition of medical necessity under
the program to ensure that it included the concept of functional
necessity, and worked with a health care coalition to enact the
state's Consumer Bill of Rights.
At the individual level, this center has been involved in training
people concerning the health care needs of people with disabilities.
It developed and disseminated training materials, both for managed
care professionals and for consumers with disabilities, including
a consumer checklist on managed care issues. It has also attempted
to educate 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. The center has focused
on ensuring quality care for its clients. One component of
enhancing quality is ensuring that providers are adequately aware
of the health care needs and concerns of people with disabilities.
Center for Independence of Grand Junction, Colorado
This center provides an information and referral packet to any
consumer who requests information concerning accessing home health
services or personal assistance services. The packet includes
the names and phone numbers of local agencies and individuals providing
such services.
Walton Options of Augusta, Georgia
This center has been actively involved in assisting its consumers
to advocate for themselves before managed care organizations.
It has also participated in health care forums for the purpose of
voicing the concerns of people with disabilities at the center.
Dayle McIntosh Center in California
This center assisted in the development of a class action lawsuit
against Cal Optima, a new quasi-governmental agency created to coordinate
managed care for people with disabilities who are on Medi-Cal.
The center provided advocacy services on behalf of its consumers
before the various managed care plans that provide health care services
under the program.
CRIL of Hayward, California
This center established a relationship with Kaiser Health Plan,
a large HMO in California, in which a contact person was identified
within the health care plan to discuss any issues that might arise
concerning service to persons with disabilities.
FREED of Marysville, California
This center has been involved 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.
The center is now beginning to engage in similar advocacy on behalf
of consumers with mental disabilities.
Access Center of San Diego, California
This center assists its consumers with eligibility and coverage
issues under Medi-Cal and Medicare. It helps those individuals
who cannot fill out the necessary application forms and to file
appeals if denied eligibility. The center also helps individuals
to appeal denials of coverage of specific requested services.
It serves as an interface with the organization that operates the
Medicare HMO program in the state, which allows enrollees to receive
a broader array of benefits than are available under the traditional
Medicare program. It thereby helps consumers to enroll in
the HMO program.
Southern Illinois CIL of Carbondale, Illinois
As a component of its policy on individual services, this center
provides education and advocacy with respect to health care services.
If needed, a staff member accompanies consumers on appointments
to a health care provider or facility.
Center for Living and Working in Worchester, Massachusetts
This center has received grants from the Robert Wood Johnson Foundation
and the Massachusetts health department to provide technical assistance
to managed care organizations in the state. It assisted in
ensuring the accessibility of services at these centers, including
sensitivity training concerning disability. In addition, this
center has administered a smoking cessation program for people with
disabilities.
Northeast Independent Living Program, Massachusetts
This center employs 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 the Massachusetts Medicaid program.
It also provides advocacy training to assist consumers in addressing
concerns with their health care plans.
Centers Participating in the Wisconsin Partnership Program
Two other Centers that did not respond to the survey were also
interviewed because the investigator was informed independently
that they have developed particularly interesting approaches to
addressing the health care needs of their consumers. These
independent living centers participate in the Wisconsin Partnership
Program, and are the only centers in the country that actually serve
in the role of provider of health care services in a managed care
program.
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 fragmentation and 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 person
with a disability enrolled. 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 financial risk for the individuals enrolled.
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, which
contracting organizations purchase in the event that the enrolled
population experiences an unusual level of health problems in any
particular year. Still, the primarily at-risk status of those
organizations that agree to participate is unusual for most community-based
organizations.
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.
This paper will focus on the two organizations that are enrolling
and treating the younger disabled population, both of which are
independent living centers. They are:
Community Living Alliance in Madison, Wisconsin
This organization 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. It is a not-for-profit
offshoot of the Access to Independence center, which decided to
separate the two entities in part to avoid any potential conflicts
of interest. Currently, the organization provides services
to a maximum of 300 eligible people with disabilities. Under
the demonstration, it is partially capitated, with the state bearing
part of the risk. Due to the relatively small number of individuals
in the risk pool, and particularly because these are high-risk individuals
(i.e., higher than average health care costs), some mechanism will
be necessary to reduce its financial risk. In particular,
when the organization becomes completely capitated (i.e., when all
of its funding is based upon a single annual payment per enrollee),
it will need to protect itself from a year in which its total costs
substantially exceed the aggregate of its capitation payments
(i.e., the annual payment per enrollee times the number of enrollees).
It is currently investigating reinsurance options for this reason.
"Centers that have become involved in health care...are attempting
to change the system by developing new models that meet the needs
of their customers. Who can do this better than Independent
Living Centers?"
Center for Independent Living for Western Wisconsin
This center is also in the process of establishing a related organization
to provide services under this demonstration program. It will
provide services to a population that includes both younger people
with disabilities (ages 18-65) and older people with disabilities
(ages 65 +). It is based in a rural area of the state that
has limited health care services available.
Reaction of the Independent Living Community
Those independent living centers that have been actively involved
in health care issues have been subject to substantial criticism
by some members of the independent living movement. The strongest
criticisms have been against centers that have actually become involved,
either directly or indirectly, in the provision of health care services.
There are at least two reasons for this strong negative reaction.
First, as discussed earlier, opposition to the medical model and
the traditional health care system are fundamental to the ideology
of the independent living movement. The movement was
established initially in large part as a reaction to the paternalistic
way in which people with disabilities were treated by health care
professionals under the medical model. Many people with disabilities
deeply and justifiably resent such treatment. Any interaction
between independent living centers and the health care system is
considered by some a deviation from this basic tenet of independent
living philosophy. They believe that the medical model will
ultimately prevail in the face of such
interaction.
Second, from a practical standpoint, they are concerned that independent
living centers that become actively involved in the provision of
health care services will develop a conflict of interest with their
consumers that will ultimately compromise their ability to provide
advocacy. This position is based in part on the broader
debate over the appropriate role of independent living centers —
whether they should be advocacy or service organizations.
The centers in the Wisconsin Partnership Program addressed this
issue, and the issue of conflict of interest, by establishing new
affiliated organizations for the purpose of providing health care
services.
The way in which members of the independent living movement generally
have responded to this issue is best characterized by Owen McCusker,
who directs the Community Living Alliance organization under the
Wisconsin Partnership Program:
"The reaction of the IL community to what we are doing at CLA
has ranged from guarded interest and enthusiasm to outright antagonism.
The course that we are undertaking is pretty radical so a healthy
skepticism is both necessary and warranted."
"For me a founding precept of IL is that people with disabilities
should take control of their own lives. A fundamental way
to do this is to create and run organizations that bring our philosophy
and values to life; organizations that expand the context of IL
into other areas that are important to people with disabilities
— areas like health care. This is something we need to do
directly; we can't delegate it."
"I sometimes think that a fear of "falling from the pure faith"
deeply inhibits the IL movement. Because of it we pass on
new challenges to push the application of IL ideas into new arenas.
I think we need a much more pragmatic approach; a more hands on
approach."
"When it gets down to it we have a simple choice, we can either
run the railroad or we can ride the railroad!"
Conclusions — Implications of Study
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. If independent living centers, which
tend to be relatively small organizations with limited resources,
are receiving an average of almost nine complaints per month from
their consumers, it is likely that this is only the "tip of
the iceberg" concerning this problem for people with disabilities.
This figure does not reflect the experiences of the many people
with disabilities who do not use the services of independent living
centers, or the many who use a center's services but who do not
voice their health care complaints.
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, such as 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.
This finding — that a substantial majority of the problems experienced
by people with disabilities are specifically related to the system's
difficulty in dealing with their disabilities — is also important
in that it suggests that eight years after the enactment of the
Americans with Disabilities Act of 1990 (ADA), people with disabilities
continue to experience disability-related problems in health care.
Although the ADA was not designed to resolve the major health care
problems experienced by people with disabilities, it was intended
to address some key access problems such as physical accessibility
of medical offices.
However, it is somewhat surprising that only about 20% of complaints
related specifically to HMOs or other managed health care plans.
This may have been a result of a lack of understanding by some of
the individuals responding on behalf of the centers as to the meaning
of the term "HMO or other managed care plan." These individuals
are specialists in disability issues, not health care issues, and
may not have been able to distinguish between managed care and non-managed
care (a distinction that is becoming very difficult to make now
that the majority of insurers have developed preferred provider
relationships). Alternatively, the low percentage of complaints
concerning managed care may be a function of the high percentage
of independent living center consumers who are on Medicare and/or
Medicaid, and who may be less likely to be enrolled in an HMO or
managed care plan.
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 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.
The negative reaction of elements of the independent living movement
to these innovations is somewhat disturbing. In the early
stages of the independent living movement, it may have been necessary
to maintain strict adherence to an independent living philosophy
that condemned the health care system and refused to deal with it.
Certainly, the movement should never accept the paternalism and
negligence with which the health care system has traditionally treated
people with disabilities. However, we must also not refuse
to deal with a system that is increasingly failing to meet our needs.
Centers that have become involved in health care are not embracing
the traditional health care system or the medical model; they are
attempting to change the system by developing new models that meet
the needs of their consumers. Who can do this better
than independent living centers?
References
Batavia, AI, 1993. "Health Care Reform and People with
Disabilities," Health Affairs 12(1): 40-57, Spring 1993.
Batavia AI, G DeJong, LS Halstead, QW Smith. 1998. "Primary
Medical Services for People with Disabilities, American Rehabilitation,
14(4): 9-12, 26-27, Winter 1988.
Batavia AI, G DeJong, TJ Burns, QW Smith, S Melus, D Butler.
1989. "A Managed Care Program for Working-Age Persons with
Physical Disabilities: A Feasibility Study." Final Report
Submitted to the Robert Wood Johnson Foundation by the National
Rehabilitation Hospital Research Center. Washington, D.C.: NRHRC;
January 31, 1989.
Burns TJ, AI Batavia, QW Smith, G DeJong. 1990. "The
Primary Health Care Needs of Persons with Physical Disabilities:
What Are the Research and Service Priorities?" Arch Phys Med
Rehab, 71(2): 138-143.
Burns, TJ, AI Batavia, and G DeJong. 1991. "The Health Insurance
Coverage of Working-Age Persons with Physical Disabilities." Inquiry
28(2): 187-93, Summer 1991.
DeJong, G. 1979. "Independent Living: From Social Movement
to Analytic Paradigm." Archives of Physical Medicine and
Rehabilitation 60: 435-446.
DeJong, G and J Sutton. 1998. "Managed Care and Catastrophic
Injury: The Case of Spinal Cord Injury." Topics in Spinal Cord
Injury Rehabilitation 1998:3(4):1-16.
DeJong, G, AI Batavia, and R Griss. 1989. "America's Neglected
Health Minority: Working-Age Persons with Disabilities."
The Milbank Quarterly, 67 (Supplement 2, Part 2): 311-351.
Frieden, L, L Smith, W Wilkinson, L Redd, and QW Smith. 1998.
"Spinal Cord Injury and Managed Care: A Consumer Viewpoint." Topics
in Spinal Cord Injury Rehabilitation 1998:3(4):80-88.
National Council on Disability. Sharing the risk and ensuring
independence: A disability perspective on access to health
insurance and health-related services -- A report to the President
and the Congress, Washington, DC: NCD, March 4, 1993.
Kailes, J. 1994. Section 3: Advocacy Issues pp 14-15, in
Health, Wellness and Aging with Disability. Copyright ©1994
June Isaacson Kailes, Disability Policy Consultant, Third Edition,
January 1998.
Kennedy, J and S Litvak. 1991. Case Studies of Six State Personal
Assistance Services Funded by the Medicaid Personal Care Option.
Oakland, CA: World Institute on Disability.
Master R, T Dreyfus, S Connors, C Tobias, Z Zhou, and R Kronick.
"The Community Medical Alliance: An Integrated System of Care
in Greater Boston for People with Severe Disability and AIDS." Managed
Care Quarterly 4(2): 26-37.
National Council on Disability. 1986. Toward Independence.
Washington, D.C. National Council on Disability.
National Council on Disability. 1988. On the Threshold
of Independence. Washington, D.C. National Council on
Disability.
National Council on Disability. 1993. Sharing the Risk
and Ensuring Independence: A Disability Perspective on Access
to Health Insurance and Health-Related Services -- A Report to the
President and the Congress, Washington, D.C. National
Council on Disability, March 4, 1993.
Rice, DP and MP LaPlante. 1992. "Medical Expenditures for
Disability and Disabling Comorbidity," American Journal of Public
Health, 82(5) 739-741, May 1992.
Sandy L and R Gibson. 1996. "Managed Care and Chronic Care:
Challenges and Opportunities." Managed Care Quarterly
4(2): 5-11.
U.S. Government Accounting Office, Medicaid Managed Care: Serving
the Disabled Challenges State Programs. Report no. GAO/HEHS-96-136.
Washington, D.C. U.S. Government Accounting Office, 1996.
Watson SD. 1993. "An Alliance at Risk: The Disability
Movement and Health Care Reform." American Prospect 1993;
12 (Winter):60-67.
Wheatley B, G DeJong, JP Sutton. 1997. "Managed Care and
the Transformation of the Medical Rehabilitation Industry."
Health Care Management Review 22(3): 25-39.
Acknowledgements
The author thanks Lex Frieden and Pamela Dautel for their helpful
editorial suggestions; Laurel Richards and Agnes McAllister for
their technical assistance in conducting the survey presented in
this report, and to the many independent living centers and their
representatives who participated in this study and who provided
valuable information.
The views expressed are solely those of the author, and do not
necessarily represent the positions of Florida International University
or any other organization with which Mr. Batavia is affiliated.
Author
Drew Batavia is an associate professor at the School of
Policy and Management. College of Urban and Public Affiars
at Florida International University.
Staff
Lex Frieden
Executive Director
lfrieden@ilru.org
Margaret Nosek, Ph.D.
Director of Research
mnosek@bcm.tmc.edu
Laurie Redd
Administrative Coordinator
lredd@ilru.org
Laurel Richards
Director of Training
The RRTC on Management of Centers for Independent Living
primary objective is to enhance the scope and quality of independent
living services provided through consumer-controlled, community-based
independent living centers located throughout the country.
Since 1977, ILRU has served as a national center for information,
training, technical assistance, and research on independent living.
ILRU is affiliated with TIRR Systems, a corporation providing a
continuum of services to people with disabilities.
This research is made possible through the support of the Rehabilitation
Research and Training Center on Management of Centers for Independent
Living funded by the National Institute on Disability and Rehabilitation
Research. (Grant #133B950003)
|
