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1
OUR DISABLED AMERICAN HEALTH CARE SYSTEM
by William A. Spencer, M.D.
INTRODUCTION MAJOR UNSOLVED PROBLEMS:
There is insufficient access, availability and financing for
prevention and appropriate care for illness, injury, defect and
disability for tens of millions of our citizens in every walk of life.
Our disabled system fails to avoid prolonged custodial care or achieve health
and an independent existence for many disabled persons. We must control
costly lifetime dependency, avoidable nursing home care or death.
For millions of our citizens there is incomplete or no
preventive, curative and rehabilitative coverage by third party
sponsors. Even many with health insurance or entitlements to care do not
receive appropriate assistance, especially those with catastrophic injuries and
illnesses, aging illnesses and disability. This "rationing ' comes from exclusions.
These include: reimbusement limits; presence of "pre-existing" conditons;
limited admission of disabled persons into group plans etc.. Immensely cost-
effective prevention of major injuries is not used. There is a severe lack of
financing of preventive maternal and well baby care to avoid incredible costs
and losses of lengthy care for avoidable prematurity or birth of defective infants.
There is a paucity of restorative medicine and comprehensive
rehabilitation to control or limit disability of many causes. Besides
these deficiencies there is lack of support in the home for independent living
and removal of physical barriers for community access for a productive and
participatory existence. Tens of millions of disabled persons of all ages are
neglected and drift into total dependency. Avoidance of bankrupting long term
care for family units and lack of help to those who can benefit by completeness
of services is an avoidable desperation and too often results in financial ruin for
many families. The ever growing financial drain on community and state and
national resources can be controlled. The tragedy is failure or indifference to
use known solutions. Further "cost control" rationing is a brutal solution in the
face of huge uncontrolled fiscal abuses. These are not unsolvable problems.
The lack of a true health care economy" connecting losses
prevented and benefits obtained is so serious that most are
convinced care costs are totally out of control except those who are
left out and could benefit. In most hospital facilities there is no direct
corelation of actual costs of care, equivalent charges and reasonably equal
reimbursement covering fair overheads. There is little accounting for even
economic benefits of cost effective care provison and efficient service systems.
We fail to equate benefit / cost savings to the person, family and community as
a return on investment, as would be revealed in a true service
oriented "economy".
Sadly our disabled system is prone to abuse in charges.
There is unfair or unreasonable profiteering. Irreparable damage is occurring in
venerable institutions that are insufficiently reimbursed or provide unreimbursed
essential services. There is serious overloading of tax based community
hospital systems by many ill injured and disabled persons. Politicians and
many sponsors call for more 'cost control', stringent rationing of services without
sufficient concern for short and long term personal, social and economic effects.
2
The essential role of physician and health care providers in
evaluating, planning and providing necessary personalized
treatment and services is too often obstructed by rationing. Yet the
responsibility for the results remain that of the provider!
There are often unrealistic expectations that these problems
can be readily solved by single solutions, such as one public or private
sponsorship of all medical care; or stringent third party insurance cost controls;
rationing of those whose life should be saved and those who should not be etc.
What an unfair, unequal , inefficient, disabled non-sytem,
health care has become! This state of affairs is even accompanied by huge
annual increases in total expenditures.
Thus, the designation "Disabled Health Care Non-System" was chosen
to imply that these are indeed serious problems that could be controlled. These
include missing or insufficient solutions for impaired access, availability and
financing of appropriate care and restoration to a healthy state for tens of
millions of persons who could benefit and regulatory control of charge abuses.
The following could help control and rehabilitate our non-system:-
(1) WE THE PUBLIC, THE PROVIDERS, FINANCIAL SPONSORS AND
POLICY MAKERS NEED TO UNDERSTAND THE EFFECTS OF DIFFERING
CONCEPTS OF PURPOSES OF HEALTH CARE ;
(2) WE NEED TO PROVIDE AND ALLOCATE RESOURCES BASED ON
A HOLISTIC VIEW OF THE NEEDS OF OUR SOCIETY AND HARVESTING
THE POTENTIAL BENEFITS FOR CITIZENS AND THEIR COMMUNITIES;
(3) WE MUST ACHIEVE APPROPRIATE AND TIMELY ACCESS FOR
ALL WHO NEED PREVENTIVE, CURATIVE AND REHABILITATIVE SERVICES
AND ASSISTANCE, AND COULD BENEFIT FROM THEM;
(4) WE NEED UNIFORM RECORD SYSTEMS WITH INFORMATION
ON KINDS OF CARE DEMAND, ACTUAL SERVICE NEEDS, RESOURCE
USAGE, AND EFFECTIVENESS; TRUE COSTS OF SERVICES CONSUMED,
AND ACCRUED SOCIAL AND ECONOMIC BENEFITS; THUS TO IDENTIFY
AND CONTROL NEEDED CHANGES FOR GREATER AVAILABILITY,
ACCESS, LIMITS OF NEEDLESS CARE, AND INSURING THE QUALITY OF
RESULTS;
(5) WE SHOULD RECOGNIZE AND UTILIZE THE PLACE, CONTRI-
BUTION AND IMPORTANCE OF HEALTH PROFESSIONALS WHO
MAINTAIN OR RESTORE HEALTH AS THOSE OF PHYSICIANS;
(6) WE MUST ACHIEVE COST EFFECTIVE CONTROL OF UNFAIR
CHARGES, PROFIT ABUSES AND PROVISION OF USELESS CARE.
These and other ideas and especially the public, professional
and political will to change are essential for progressive, planned and
evaluated revisions of our non-system. Our helpless citizens deserve no less!
3
THE PIVOTAL ROLE OF OUR CONCEPTS OF PURPOSES OF CARE
FOREMOST, there is frequent use of the word "Health Care" as if it is
an unambiguous concept. It actually includes a number of viewpoints that are
usually not considered in assessing the costs and value of "health care".
"Health" is not necessarily a result of successful medical treatment of disease,
injury or defect - the common medical view. Many in public health and in
rehabilitation consider Health and its preservation to be a state of well
being including self directed purposeful performance in daily life
appropriate to age and circumstance.
SECOND, illnesses are often thought of as "Acute or Chronic", the
latter often considered to be long term, usually incurable. The word "Cure" in
medical usage refers to the beneficial results of treatment or natural recovery.
"Incurable" generally means inability to eliminate or control "Pathology".
Many chronic states may be preventable, reversible, or controllable and health
restored by prevention or control of the associated Disability Disability is
difficulty or inability to perform one or more customary purposeful activities in
daily living including self care (ADL) and independent self directed education,
work, family and household management, shopping, recreation etc. (IADL)
characterizing independent lifestyles.
THIRD, Preventive measures are too often not used, have low priority, or
recognition. Therefore the preservation or restoration of health includes:
Primary and Secondary Prevention efforts. Primary includes safe
personal health practices; vehicular designs minimizing auto crash injury and
death ; provision of immunizations; sustaining health in mother during gestation
and well baby care etc. Secondary, refers to early access to trauma care and
early prevention of disabling medical complications. These include pressure
sores, infections, etc. all likely to lead to "chronicity". Preservation or restoration
of bodily functions for movement, sensation, proper nutrition, opportunity to
choose one's own activities etc. is especially needed in the early phases of
potential disablement Otherwise, bodily and even serious psychological
complications of dependency can become "chronic".
Tertiary prevention means restoring impaired or missing purposeful
activities of life and by provision of functional substitutes for mobility, environ-
mental control and accessible modification by comprehensive rehabilitation.
Often Allied professionals and technicians assist the disabled person in
acieving purposeful performance in daily life, to live at "home" and be active in
his or her community. Support services may be needed for those severely
impaired by use of home help, personal care, transportation etc.. The latter may
require changes in the handicapping physical environment of living as well
restrictive public attitudes. This are often far morecost effective than "chronic"
long term care in a nursing home with development of a poor physical and
psychological conditions often followed by periodic rehospitalizations.
4
Thus, signs and symptoms of a "Disabled Health Care System"
reveal how concepts aboout what is a "Health care system" are crucial to
revelation of how to plan and implement change. Change is difficult because
there are two or more conflicting ideas of purpose. One, is that it is a "market"
based economy, with cost control and profit as the goal. There is also
the conviction that health care is a social service, a right like education,
which can be cost effective as well and not an entrepneurial profit
hunting business. This view is widely shared by persons in public health, many
in primary care medicine and specialized institutional restorative medical care.
Virtually all in rehabilitation services and assistance are strongly convinced that
that this is so critcal for the outcomes they seek. This results from their personsal
experiences in selection, provision, and evaluation of the results of their efforts
on behalf of ill, injured and disabled people and because they are responsible
to them, their families, and society for the results obtained or the lack thereof.
Too often purchasers like insurance companies emphasize profitability
and fail to understand how there should not be "over-charging" or greater costs
by care resources having different and a more costly severe case mix.
Administratively, "cost control" is often rationing by limitations on eligibility,
kinds of services allowed and limits on charges, whether reasonable or not. etc..
Reimbursement limits and allowable "benefits" are under the guise of
"cost control" in a highly competitive insurance industry also facing "what the
insured business or consumer is willing to pay". Too often, there can be too little
or no reimbursement for services provided for preventive, curative, restorative
and rehabilitative management of catastrophic illnesses and injuries. The
situation is nearly always viewed someone else's problem or let the
"government do it" Too, the other sources" may also have funding limited
reimbursement. State and Federal government programs like Medicaid can be
forced into severe cost control and rationing from limited state and federal/state
budgetary matches.e A further decrease in federal matching is proposed now.
Because the actual relationship between costs, charges, reimbursement,
cost effectiveness and benefit cost savings, are not the controlling elements
there simply is not a business like "economy". How can there be one?
There is usually no accounting linkage justifying actual cost of provision of
services, assistance, and technologies using cost effectiveness and genuine
benefit/ cost to identify large economic savings to the person, family, community,
state and nation.
All of this produces huge administrative overheads, public and private
given complicated multiple forms, repititous justifications, completion delays in
authorizing and providing payment etc.. This is variously estimated at 16 to 20
or more per-cent of the nearly two thirds of a TRILLION DOLLARS currently
expended for "Health Care".
The non-system, has also fostered many other financing abuses.
These include over-charging caused by the limits in reimbursement. This
overcharging for allowable services is used as offsets for inadequate income
elsewhere. This component of ever rising costs is an abuse which also winks at
entrepenurial for profit hospitals" and systems. These seek to skim" the
patients whose care is fully reimbursable; or there is "profit hunting" by
provision of needless services; by too early discharge of sick persons; and
byavoiding the admission of those with limited or no reimbursement potential.
5
Dumping of unsponsored patients occurs on overloaded tax based
hospitals by for profit and 'non-profit private hospitals. This also occurs in
true "not- for- profit" hospitals since most face huge losses because of
increasing need to care for those with no or incomplete insurance. Some have
been forced to eliminate critical community services like trauma centers!
Self serving ownership of profit making technologies by
physicians is increased by failure to determine and use actual cost charges
and forbid ownership of such facilities unless unavailable elsewhere. Other
examples of maluse of profitable activities include failure to share, sufficiently,
the high investment cost diagnositic facilities like Magnetic Resonance Imaging
by hospital groups.
OTHER BARRIERS TO MAINTENANCE OF HEALTH PREVENTION
AND CONTROL OF DISABILITY AS WELL AS TO CURE DISEASE
The role of prevention is clearly under-resourced in spite of political
and other rhetoric that it is essential and less costly than cure or control of
disability. The resources and behavioral knowledge needed to overcome the
collosal problems of attitudinal change to prevent life threatening behaviors of
sexual promiscuity, drunk driving, failure to use safety measures like seat belts
and helmets, drug abuse, alcoholism, smoking etc. are indeed sparse. Yet the
potential effectiveness of preventive measures has been increasingly
appreciated by public awareness of HIV infection and fatal AIDS.
We often ignore utility of knowledge and technologies in restorative
care and rehabilitation with community accessibility to control
handicaps of disability for the achievement of satisfying performance in daily life
and self sufficiency. Hopefully, the new American Disabilities Act will reduce
barriers to community inclusion and participation
Solutions in "quality" health care are not simple slogans, This truly must
aggregate the professional and technical capability and capacity to manage
the ill or injured or defective individual in an individualised way that protects
personhood. This is the physician's and health professional's role and all
who are involved in the care of the person, whether the problems are short term
or long term, curable or not, disabling or not.
The rationing of care discussed before under the guise of "cost control"
often occurs as the principal health insurance cost control method and by
governmental regulatory fiat e.g. proposed reductions in Medicare and
Medicaid. Too often this determines what may be done or not, for when or how
long. Why must we continue to produce more prolonged short term and long
term CHRONIC CARE, its costly losses in future life's economic and social
potential for millions of our citizens These barriers and other misplaced cost
control limit access; provision and operation of needed and effective resources;
and especially the care results needed for a life of quality.
We need to drastically reduce costly administrative control of care
delivery to those responsible for provison of services and the utility.
Prescribing, providing care or not, changing it, or prolonging it ,or stopping it
must remain in the hands of those ministering to the patient and responsible for
his or her outcome whenever and wherever relevant.
6
The preceding principal reasons show that comprehensive health
care is a personal service and not a material commodity. Even the
divison of "health care" into acute or chronic care, misses the point that health
is far more than absence of illness or injury or defect, nor is
prevention a universal solution to all problems as important as it is.
THUS OUR PIECEMEAL APPROACH TO CARE, LIMITS RELEVANT
ALLOCATION OF RESOURCES, FUNDING AND WIDER USAGE OF
HEALTH SERVICES RESEARCH AND DEVELOPMENT, AS WELL
AS SPLINTERED OR LIMITED CARE RESOURCES AND
CONFLICTING "SPECIAL INTEREST" ADVOCACY RETARDING
PROGRESS TOWARD A HOLISTIC INTEGRATED SYSTEM!
REHABILITATING A DISABLED HEALTH CARE NON-SYSTEM
FROM A MARKET BASED ECONOMY TO A PUBLIC SERVICE LIKE
EDUCATION REGARDLESS OF METHODOLOGY OF FINANCING
We must change our goals, process and resourcing and build upon the
strengths and control the identifiable problems for a progressively developed
service based system having credit for economies justifying costs! Cost
effectiveness means limiting needless care and utilizing care means with the
best results in outcome
There is little doubt today there is no single sweeping solution to the
complexities of our health care non- system as desirable as that might be. Its
strengths as well as its problems co-exist. Some well proposed revisions are SO
sweeping in scope that incremental development will be essential.
The concern for massive revision in a single solution could "throw out the
baby with the bathwater". A planned, progressively, evaluated process is
needed given the diversity among the states in our nation; their resources, size
of populations and ecology, and variable resources and service needs. There
should be clear acceptable objectives protecting strengths; a cost effective and
benefit/cost driven purpose; and ethical non-mercenary controls in the interest
of protection and elimination of abuses for all those who can benefit.
Ready consensus is obviously not possible in many aspects of solutions
to the diverse problems given the many interest groups involved. This should
not deter building upon strengths or implementation of solutions even though
their development requires change in attitudes and practices.
Our distress at the lack of uniform agreement on procedures for change
has established resistance to change reducing strengths and causes
weaknesses There are examples in the results of deliberations of appointed
committees, study bodies of state governors, political leaders, and various
private organizations representing, providers, purchasers, as well as
politicians, etc.. Yet, the personal distress of millions without help, impoverished
by major illnesses, long term care, loss of health insurance, facing rationing,
lack of access or availability of help is tragic.
Most care sponsors do agree on cost problems, system weaknesses;
offer differing controls on control of expenditures, while complaining that there
is too little quality of care.
7
This confusion of symptoms and consequences are like high fever
in an ill person or a pain in the chest. The symptoms may indicate a fatal
or non-fatal condition yet surely something is wrong. However causes and the
treatments are manifold and diverse. But to the individual citizen only one or
two effects are percieved like no insurance or care money or no access to help.
These are most relevant to him or her.
We therefore need national goals, that are palpable, realistic, achievable
and cost effective not only in monetary terms but in social and long term health
and economic results. These surely linclude a healthier less disabled society,
safer environment with effective preventive and rehabilitative efforts to control
disability's costly dependency by harvesting lost productivity. We must realize
the healthful opportunities deserved by children, the nascent productivity of
youth and young adults and the preservation of dignity and safe independent
lifestyles for the elderly. The social and economic benefits are real. The
sacrifices of some other public or political "priorities" are certainly worth the
results.
THE NATURE and FEASIBILITY OF CHANGE
Some of the solutions exist in various locations and forms. There are
strengths to identify and build upon, problems to be controlled or eliminated.
Some solutions concern changing operational practices of public or private
agencies, service resources, personal care providers and institutions involved
in health care. Some represent well defined or poorly understood expectations
of persons as well as the body politic. They should not become "studies" with
results not implemented, or failure to change iregulatory, financial or service
operations.
The total amount of annual expenditure on appropriately utilized health
care should be more than enough to actually reduce increasing costs,
especially if we eliminate the waste of administration and excesses of usage of
needless services. The control of the human losses of life and productivity is a
bonus with large long term cost savings using methods we know today. Some
ways to go are near term and some are long term. Some solutions exist and
are transferable, some are unique to particular settings, some do not now exist.
All of this suggests that we are in the process of rehabilitation, by remodeling,
by rennovation, by replacement and by planning and creation of new attitudes
and expectations as well as, revising resources, practices and policies and
procedures. This is the nature of solutions for a disabled system, and truly that of
rehabilitation of a person. We can change goals and operations of Institutions
(private or public), professions, a government, and even the values and
unfulfilled expectations of a society.
Change for the better will occur there if there is willingness to
change, to sacrifice some other goals, To implement what is
needed now and progressively in the future. This is possible by
enhancing strengths, developing new ones and to eliminating obvious
"pathology". This is one of the largest personal, socio-political
challenges in many decades. In the futurelf we truly value a healthy
nation, the preservation and expansion of its quality of life as well as its
productivity; we nust seize the moment with determination and efforts.
8
WE NEED TO PLAN AND ACT IN TERMS OF POTENTIAL BENEFITS
OF A SYSTEM OF ACUTE CARE, PREVENTION, AND CONTROL OF
DISABILITY AND DEPENDENCY THUS JUSTIFY COSTS IN THE
SAVINGS AND MORE EFFECTIVE USE OF SERVICE FINANCING
AT THE FIRST ENCOUNTER OF A NEEDY PERSON.
-Too often we completely ignore the needless costs of failure of
prevention and economic loss to the community as well as the health care
"economy" e.g. for controlling injury and optimally managing its disabling
consequences or even needless loss of life. Personal failure to use safety
devices or unavailable trauma systems is unconscionable. Many killed or
severely injured persons result in long term personal and community economic
impacts. Today, more million years of life, forgone by injuries, far exceed that
lost from heart, cancer and stroke combined. (see Injury in America", a report to
the nation from the National Academy of Science, IOM National Academy
Press, Wash. D.C. 1985)
-Increases in dependency from trauma when coupled with greater
survival could leave one disabled person, to every one to one and
onehalf working person in the next quarter century! Yet we fail to spend on
R and D. to control this huge problem an order of magnitude less than heart,
cancer and stroke alone. We have only fifteen million dollars at the
Communicable Disease Center, to develop effective injury preventive
measures to control this personal behavioral and environmental problem.
(See "Disability in America", NRC, NAS, IOM, National Academy Press, 1991)
-How long can we afford to ignore progressive, planned and evaluated
change as well as what we can do more effectively with what we have at our
hands? Must we allow ever greater drain on all of our resources by not
eliminating needless expenditure, abuses, and needless chronic care costs and
loss of productivity by failing to control and limit disability?
AVAILABILITY OF A BROADER ARRAY OF SERVICES
There is compelling evidence of why and how to increase availability of
allied professionals and primary care physicians in many of our nation's large
medical centers, in community health agencies of city and county governments,
and in free standing rehabilitation centers,
-Allied professionals such as Physical and Occupational therapists,
Psychologists, Medical Social Workers, Physician Assistants have shown the
cost effectiveness of their services in hospital, rehabilitation centers, and out of
hospital in homes, and nursing homes. Primary care Physicians and allied
professionals in community health clinics have been able to reduce costly
indigent hospital-ization, and the incidence of chronic disease with control of
hypertension, pulmonary diseases etc.
9
-In rehabilitation programs the addition of Orthotists and Prosthetists and
Rehabilitation Engineers have helped to control physical disabilities such as
loss of mobility, environmental control and reduction of environmental barriers
by new technologies. These have restored lost arm and leg functions, provided
vision, hearing substitutes, achieved improved mobility, comunication and
community access. Yet many of these developments do not have the appeal to
sources of manufacture and distribution that is seen in pharmaceuticals etc.
ACCESS TO ALL WHO NEED CARE CAN BE A REALISTIC
PURPOSE IF THERE ARE PROPERLY IDENTIFIED BENEFITS
-We must avoid exclusion of people who today cannot get services, are
too poor to pay for their care and have no means to obtain insurance or cannot
even join managed care and other organized health maintenance systems or
preferred provider organizations, HMO's, employer health benefit group
contracts etc. Most have major enrollment exclusions, like pre-existing medical
condition S e.g. HIV infections, carcinoma, head and spinal cord injury "chronic"
lung and heart disease etc., and unemployment benefits. There could be major
limitations on catastrophic care or disability after enrollment in properly
structured and resourced private plans. Extent of exclusion of single persons
from large prepaid employer groups should be determined and remedied.
-We need to contrast these exclusions with benefit cost of injury
management in worker compensation programs and reinsurance which have
demonstrated long term cost control efficiencies in limiting disability by savings
of ten times the cost of rehabilitation, early intervention etc. This and other
comparisons would clearly demonstrate potential cost savings for instance in
controlling needless procedures; the cost effectiveness of wellness programs in
businesses, industrial attention to on the job disability prevention etc..
Obviously, some of these are self evident problems soluble by regulatory or
other means. "Study" should not be a basis for delay in control of obvious
inequities, or use of existing knowledge and technologies where and when
indicated. Who will take the initiative?
-Study "systems" need to be developed to evaluate cost and quality of
care, include out-patients and in-patients from individual, groups, private and
public medical practice systems, prepaid care systems and public benefit
institutional systems like the military and veterans care programs. We must
identify the economic status of referrals as it effects availability of care as well
as kind of sponsorship. This is crucial to evaluate similarity and differences of
extent of needs and potential to benefit of care among various kinds of social
and economically varied patient mixes. These are potential results of demand
and outcome studies. Various care systems need to be contrasted such as pre-
paid HMO,s, health insurance and public Medicare and state based Medicaid
systems, and the extent of coordination or lack among various governmental
entitlement systems.
10
-There are many differences in Medicare, Medicaid, coordination with
Crippled Childrens programs, AFDC, Vocational Rehabilitation etc that need to
be remedied among the several states This affects appropriate usage of
public and private not for profit care facilities with expertise and relevant special
programs for those eligible. (see letter from a Pediatrician identifying the huge
barriers to everyday access to appropriate catastrophic care for severely
disabled infants and children)
THE UNQUESTIONED PRIORITY OF HEALTH SERVICES
RESEARCH AND DEVELOPMENT.
We must establish HEALTH SERVICES RESEARCH on the OPERATIONAL
institutional level In parallel with DEMONSTRATIONS of the results of obvious
revisions, strategies and controls and other changes we can implement now
WE MUST HAVE A, RECORD KEEPING SYSTEM REFLECTING
CARE NEEDS, BENEFIT POTENTIAL, SERVICES PROVIDED AND
ACTUAL COSTS AND BENEFITS OBTAINED
-We need now to compare descriptive statistics on differences in the
availability, access and outcome of populations served among prepaid, open
system, medical center and free standing community facility service systems.
Examples include study of comparative differences in rural and urban care
resourcing such as for trauma care; availability of urban and rural emergency
transportation systems; medical center access for cost effective specialized
services; effect of differing patterns of facility ownership, public, private, not for
profit, for profit, group health care on availability, adequacy and quality of
services and outcomes etc..
-We must establish widespread common reporting standards, for short
term, long term non- disabling and disabling conditions to understand patient
mix differences effects of insufficient trauma care and restorative and
rehabilitative services. These can be structured to identify the utility, cost
effectiveness and benefit/cost of alternatives to long term care, home support
for independent living etc. Unused research results in rehabilitated persons
with spinal cord and head injuries are available as examples.
-Similarly, we need far better data bases on patterns of utilization and
outcomes, and within them actual cost of care elements, charges, reimburse-
ments, disbursements for operations including reasonable and realistic
overheads etc., accrued care cost effectiveness and long term benefit costs.-
-We need to create and evaluate a safer and genuine economically
viable system of service. This needs to be based upon adequate and accurate
records uniformly used on service demands offering a potential to benefit; care
provided and outcomes obtained
-We urgently need to build upon the strengths of existing cost effective
individualized delivery of services and assistance and expanded services of the
needed allied health services and technologies in short supply.
11
CONTROL OF ABUSES AND WASTED RESOURCES
-We need to use negotiated prospective annual lump sum budgeting of
our individual health care institutions, replacing our item by item charge system
consuming ridiculous professional staff time and effort (in some studies as much
as 40%). We need to account for regional differences in actual costs of
personnel and materiel, differences among insititutions in case mix by financial
availability, disease, injury and defect in intake proportions of patients, by age
and socio-economic differences and effects upon true cost of operation etc.
-There should be coordination among private and public sources of
financing of care, using a single point of encounter in a coordinated admission
contact system This should merge third party, state and federal entitlement
systems which may be involved in coordination of social, medical, rehabilitative,
and financial assistance. (See State of Oregon system for intake coordination
of needed multi-agency services and assistance to achieve one or more
simultaneous intake medical and or social needs and economic assistance
with saving up to 30% of overall service and administrative costs !)
-There should be identification of true cost of care losses from various
kinds and sources of rationing, under-reimbursement by public agencies, for
profit hospital overcharging and patient proselyting, not for profit hospital
patient dumping on tax based hospital systems. There should be identification
of trauma by pass practices from not for profit hospitals overloading tax based
charity hospitals and the relationship of this to trauma system under-reimburse-
ment and under-resourcing.
-Dunning of high risk persons should be exploited by use of add on fines
for drunk drivers, multiple traffic violators, and those avoiding seat belt usage to
establish a kind of reinsurance pool for catastrophic injury trauma and
rehabilitative care (e.g. in Texas and Florida). Similar methods can be used for
state based tax "add on" for cigarette costs and alcohol abusers as is done in
Canada to supplement acare cost pool for treatment of these abusers and
others.
-Equalize charges for maximum medical and surgical care procedures,
adjusted by a relative value scale for difficulty and experience of provider as is
used in Callifornia. Study how to eliminate unnecessary medical care
procedures based on followup outcome studies for need and utility of results.
Stop physician abuse of self owned technical resources where these are
otherwise available at lower cost, for profit hunting control. Increase hospital
shared use of high technology equipment to avoid duplication and overcharges.
-Require medical societies to strengthen and increase post graduate
educational recertification, physician license revocation for malpractices.
Reguire state health agencies to improve regulations for institutional safety,
patient care abuse, etc. Include chiropractic, health and fitness center operation
safety standards, and require medical certification as in other countries..
-Limit malpractice contingent liability limits but protect settlement for
follow on cost of care and equipment needs if needed to restore or protect the
health or provision of long term care, home support etc. if needed
12
THE HEALTH CARE FINANCING MISSION
LOSS CONTROL FOR MORE COST EFFECTIVE RESULTS
Constitute and finance a long term planning and evaluative process
with continuing review of subsequent utility, cost effectiveness,
and benfit/cost results, jointly financed by government and private
health oriented foundations if possible for an AD HOC NATIONAL
ADVISORY COUNCIL located at the INSTITUTE OF MEDICINE(I)
OF THE NATIONAL RESEARCH COUNCIL, NATIONAL ACADEMY
OF SCIENCE, POST HASTE.
THE CHARGE AND THE PROCESS
IOM TO SUPPORT THE PUBLIC COUNCIL, THAT WOULD BE
APPOINTED AND FUNDED UNDER A PUBLIC /PRIVATE GRANT AS A
STANDING NATIONAL COUNCIL AND APPROVED BY THE PRESIDENT AND
THE CONGRESS AND SPONSORING PRIVATE HEALTH RELATED
FOUNDATIONS. IT WOULD IMPLEMENT OPERATIONAL SUB-COMMITTEES
TO DEVISE AND MONITOR HEALTH SERVICE EVALUATIONS, CHOOSE
THE SAMPLE AREAS AND LOCATIONS TO BE USED IN ORDER TO PLAN,
STUDY, AND EVALUATE OUR NATION'S HEALTH CARE RESOURCES; TO
MONITOR AND REPORT ON THEIR PROCESS, PROGRESS AND INTERIM
AND FINAL RESULTS; AND TO DEVELOP SUITABLE NEW RECOMMEN-
DATIONS FOR IMPLEMENTING CHANGES READY FOR INTRODUCTION;
AND FOR RESEARCH TO DEFINE NEW PUBLIC AND PRIVATE POLICIES,
THEIR FINANCING METHODOLOGY; TO IMPLEMENT A PLAN AND THE
CRITERIA TO JUDGE THE VALUE OF NEAR AND LONG TERM EFFORTS FOR
FUTURE REVISION OF THE HEALTH CARE "SYSTEM" PRESERVING ITS
STRENGTHS, AND ITS SUCCESSES AND CONTROLLING ITS FAILURES.
REPORTS BY THE NATIONAL "PUBLIC" COUNCIL WILL BE MADE TO THE
CONGRESS AND THE PRESIDENT AND TO THE PUBLIC AT LARGE. STUDY
BODIES WILL INCLUDE SUB-ORDINATE PLANNING AND OPERATIONAL
HEALTH SERVICE RESEARCH AND EVALUATIVE UNITS, APPOINTED BY,
DIRECTED BY, AND REPORTING TO THE COUNCIL.
THE COUNCIL WOULD BE APPOINTED BY THE PRESIDENT IN
CONSORT WITH THE BIPARTISAN LEADERSHIP OF THE HOUSE AND
SENATE. IT WOULD BE COMPRISED OF A PUBLIC, PROFESSIONAL AND
GOVERNMENTAL CONGRESSIONAL AND ADMINISTRATIVE JOINT BODY
HAVING A POLITICAL, ADMINISTRATIVE AND PRIVATE MIX OF
LEADERSHIP PROFESSIONAL AND LAY PERSONS, KNOWLEDGABLE OF
AND WORKING IN VARIOUS ASPECTS OF HEALTH CARE REVISION, AND
THOSE EXPERIENCED IN OPERATION OF VARIOUS MODELS OF KINDS OF
PROGRAMS, NATIONAL ORGANIZATIONS, MODEL INSTITUTIONS,
COMMUNITY SERVICE AND LAY ORGANIZATIONS THAT HAVE
INFLUENCED BENEFICIAL CHANGES IN RESOURCING, REVISION,
OPERATIONS ETC. INCLUDING RELEVANT MEMBERS OF THE IOM AND
ITS TECHNICAL SUPPORT.
13
THE COUNCIL' S OPERATIONALSUB-COMMITEES WOULD BE
COMPRISED OF PROFESSIONAL AND TECHNICALLY KNOWLEDGEABLE
HEALTH SERVICE RESEARCH PERSONS. THEY SHOULD BE SOUGHT
AND ENCOURAGED TO HELP PROVIDE OR CRITIQUE RELEVANCE OF
DESIGN AND OPERATION OF APPROPRIATE STUDIES AS A STANDING
PLANNING AND OPERATIONAL ENTITY SUITABLE AND ACCEPTABLE TO
THE NATIONAL ACADEMY OF SCIENCE. THIS MAY ALSO INCLUDE
MEMBERS OF THE ACADEMY AS WELL AS APPROPIATE NON-MEMBERS
AND UTILIZE PERIODIC IOM AND ON-SITE OPERATIONAL MONITORING
FOR ADVICE AND CONSENT ON STUDY PROCEDURES AND PROVISION
OF SUITABLE REPORTS.
BOTH THE COUNCIL AND THE STUDY BODIES WILL BE DRAWN
FROM LEADERSHIP PERSONS IN PRIVATE AND PUBLIC GOVERNMENT
AGENCIES, NATIONAL HEALTH CARE PROFESSIONAL ORGANIZATIONS,
PUBLIC HEALTH SCHOOLS, RELEVANT PUBLIC SOCIAL AND LEGAL
AGENCIES AND BODIES, PRIVATE AND PUBLIC ACADEMIC MEDICAL
RESEARCH AND EDUCATIONAL INSTITUTIONS, HEALTH SUPPORTIVE
FOUNDATIONS, NATIONAL HOSPITAL ORGANIZATIONS, MAJOR MEDICAL
CENTERS, INTERNATIONALLY RECOGNIZED TEACHING AND RESEARCH
ACUTE CARE AND REHABILITATION HOSPITALS, LARGE HEALTH SERVICE
DELIVERY ORGANIZATIONS, HMO'S, ETC.; REPRESENTATIVES OF MAJOR
THIRD PARTY HEALTH INSURANCE, REINSURANCE AND WORKERS
COMPENSATION SYSTEMS, MAJOR HEALTH INSURANCE COMPANIES,
THEIR NATIONAL ORGANIZATIONS AND INDUSTRIAL REPRESENTATIVES
AND RESEARCHERS WITH MODEL RESEARCH, PREVENTIVE AND HEALTH
MAINTAINING PROGRAMS, SUCCESSFULLY EMPLOYING DISABLED
PERSONS, ETC.
THIS NATIONAL EFFORT MUST ALSO ENTAIL APPOINTMENT OF
ADVISORY "OMBUDSMENLIKE" PERSONS DRAWN FROM LAY GROUPS
INVOLVED IN HEALTH CARE REVISION FROM THEIR NATIONAL ORGAN-
IZATIONS, E.G. ELDERLY, DISABLED, VARIOUS CATEGORICAL DISEASE
LAY GROUPS ETC. WITH GERMANE SUCCESSFUL EXPERIENCES AND
CONCERNS FOR THEIR CAUSE ALSO THE NATIONAL COUNCIL FOR THE
DISABLED APPOINTED JOINTLY BY THE FEDERAL EXECUTIVE AND
LEGISLATIVE BRANCHS OF THE GOVERNMENT, LAY PERSONS ON THE
NATIONAL INSITUTE OF HEALTH GOVERNING BODY.
14
SOME SPECIFIC EXAMPLES OF POTENTIAL NEAR TERM
AND LONG TERM SOLUTIONS TO BE EXAMINED
The following include some potentially useful changes readily
implemented and those needing study for transferability Many would be aided
by planning, pilot operation and evaluation, thus "incremental", as indicated in
the preceding IOM council, sub-committee structure, etc. There is real feasibilty
of creating orderly change and avoiding disastrous single solutions to such a
complex problem. We can also make obvious changes in the near term.
-(1)Aggregate comparative cost effectiveness of various care systems
locally and regionally for national data bases for private, and public state and
national health care policy decisions. Establish long term comparative cost
effectiveness data accrued in different local, regional and state wide service
"systems" utilized in health care delivery. ( This may entail future studies of
urban, suburban, rural, and state or interstate "regions" with controls for
comparison among organized systems like HMO's PPO's "Managed care"),
Existing public and privately sponsored hospitals, medical centers, rehabilita-
tion facilities, long term care facilities, home care systems, independent living
facilitation, etc. The effectiveness of care results should be based upon
reasons for encounter, locations, availability, accessibility, service usages,
outcomes, cost effectiveness etc. among different reasons for intake in various
socio-economic groupings. Our major medical centers could establish and
evaluate large pre-paid care systems for their employees of every social group.
Studies of this kind are in order to understand differences among private,
for profit, non-profit, and public tax based facilities and various sources of
reimbursement. While daunting, this type of information is widely scattered and
not collected in a uniform manner; coded in an accessible manner, publically or
privately with sufficient privacy protection. ( see "Uniform Hospital Discharge
Data Bases" a conference report of the Johns Hopkins School of Public Health)
-(2) Study and evaluate feasibility of early widespread implementation of
existing regional examples of single point of encounter systems coordinating
private, public benefits and entitlements person by person, to decrease gaps,
time delays, and incompleteness of services. These are sources of service
barriers or inefficiencies decreasing effectiveness of services as well as causing
administrative overhead costs hat could be used for service. Expand research
and demonstration grants on how to measure cost effectiveness and benefit
costs of coordinated care to maximize cost effectiveness in federal and state
systems.
-(3) Use prospective annual negotiated lump sum budgeting of health
care institutions to justify differences in patient care by identifying differences in
mix, timing of demand, purposes of encounter and actual cost of care as control
of profit hunting" This serious effect of excessive "profits" increases total care
costs, and conversely, causes true cost of care deficits for some non-profit
facilities as a result of insurance based rationing and under-reimbursement by
public agencies. This occurs in many not-for profit teaching hospitals and
specialized rehabilitation hospitals and public tax based hospitals receiving the
non and part pay patient "dump". Also "for-profit "systems can make large
profits in dumping and by controlling who may enter. (See For Profit Private
Psychiatric Hospitals State of Texas, and current Congressional investigations).
15
-(4) Dun by means of "add- on" fines, those taking health care risks for
example in auto trauma to share the cost burden of catastrophic injury care
emergency and rehabilitation services. (recent Texas and Florida laws reveal
that millions of dollars can be pooled for better trauma resourcing and
comprehensive rehabilitation .)
-(5) Decrease long term care costs by development and widespread
support of independent living in the home, for foster care, for respite etc. Identify
existing examples on how to coordinate and revise independent living support
resources and health related community service programs (now solely care
related). This includes construction of barrier free locations of residence, work,
and recreation. etc. Program use of available public funds. (e.g Use
unemployed construction workers receiving un-employment benefits to remove
access barriers for able/disabled re. (Americans Disability Act ,1991)
-(6) Stop rationing of care by cost and entitilement limits increasing
chronicity, rehospitalization, preventable complications leading to chronicity
and failure to use restorative and rehabilitative care. Private insurance
administrative and/or public program regulations produce usurpation of
individualization and personalization of care so crucial to appropriate medical
decision making and care results.
-(7) Define requirements and barriers to the legal changes needed to
implement at the federal and state level of government the limitation of
malpractice settlements limits. This has increased the overhead burden on
medical practice, increasing defensive medicine, overtesting and over
treatment, etc.and couple this with decreased physician reimbursement for high
cost of malpractice insurance protection. (see current costs of malpractice
Insurance appended)
-(8) Explore and recommend methods to control the large costs of high
risk major and catastrophic illness using reinsurance techniques as in casualty
reinsurance protection of on the the job injuries and in workers compensation
insurance cases. Develop reinsurance availability by public or private pooling
to cover catastrophic disease and injury management costs.
-(9) Evaluate and define methods to equalize maximum medical and
hospital charges of high cost medical care procedures to control rising costs of
medical and surgical care. Consider ways to implement relative value and
difficulty scales for charges based upon California experience and its effects
upon outcomes by morbidity studies.
-(10) Evaluate need and feasibility of financing and providing incentives
for increasing the numbers of and resources for education and training of short
supply allied health professionals. Their services and technologies reduce long
term care needs and costs e.g. Physical and Occupational therapy, Medical
social work, Orthotics and Prosthetics, Rehabilitation Engineering. These are
also sources of exportable cost effective new medical technologies.
-(11) Define how to expand tax based resources and entitlement based
reimbursement for services having cost effectiveness justification. For
example, analyze and propose how present expenditures by various public
entitlement programs for health care and rehabilitation, Social Security,
Medicare and Medicaid and Vocational Rehabilitation expenditures can be
justified by cross agency credits for savings offsetting expenditures.
16
The preceding could comprise a genuine internal National health
"economy". All government health entitlements are authorized only as
expenditures. There is currently no cross credits for savings in present or future
expenditures between agencies in the budgetary process. Why cant there be
credit for savings on investment in health? Industry in the USA would certainly
not develop new products and fund R. and D. if it did not affect future income
offsetting current expenses. Even the Defense department has to forward fund
to guarantee future production and weapons availability.
-(12) Determine the barriers and legal origins, if any, to changing the
present inability or reluctance to utilize such an internal cost/savings economic
system among single entitlements presently considered solely as isolated
federal costs in Federal and State budgeting. Also consider forward funding as
is practiced in defense expenditures to stabilize resource investments.
-(13) Establish forward funding guarantees in health care resource
service funding providing new or needed health services utilizing federally
programs in high need areas of service development. Establish the effect of
incomplete service reimbursements loss impact upon not for profit and local tax
based service institutions. Define controls needed for cost effective coordination
of expenditures among differing state/ federal matching care program support
systems particulqrly Medicare, Medicaid, Crippled Childrens programs, public
assistance programs etc. causing limited access or care resources for the poor.
-(14) Establish how to provide state and regional public and private
reserves for high cost catastrophic illnesses and injuries, as is done in
reinsurance in casualty and compensation industry.
-(15) Define barriers and solutions to expansion of international markets
for health care technologies, now limited by archaic, tariffs and international
import and export restrictions. (See Section of National Academy of
Engineering reports on this area over the past two decades)
-(16) Determine how to equalize research expenditures, both public and
private, according to their prospective effect on control of disability, dependency,
and promotion of productive survival especially of children, youth and young
working age adults. (see IOM Trauma report ) Analyze and propose ways to
eliminate the barriers to implementation and financing of recommendations.
-(17) Define feasible methods to expand physician control of malpractice
policing by State Medical Associations. Require uniform efforts at continuing
education requirements, stiff investigation and usage of loss of medical practice
privledges (as carried out in some state medical societies and in Canada).
Identify why some states have fewer losses of priviledges and others many.
-(18) Define and legislate regulatory sanctions on various self serving
professional practices in hidden service and technology ownership; for profit
hospital care dumping; unethical patient admission solicitation etc.. These and
many other abuses, involving drug overcharging, need to be defined and
controlled among directly or indirectly involved provider, suppliers and owners.
-(19) Detemine how to finance the expansion of the extremely limited and
poorly funded health services research effort in the USA. Find ways to establish
and use criteria and methods for improving cost effectiveness and benefit cost
of services and service systems. Define and eliminate reasons for the decline
of funding of the National Center for Health Services Research as a resource
for research and development of cost effectiveness and benefit cost measures .
17
A Personal Note: Many of the ideas in the preceding were derived from
the following experiences- planning and operating a critical care unit for 400
respirator patients and more than 2000 acute and "chronic poliomyelitis
patients in a special "care and research center" in an acute general hospital.
This special center was committed to service, research and education with the
cooperation and support of the City/County hospital in Houston, Texas in the
1950's; the Baylor college of Medicine and the local chapter of the March of
Dimes. Later, establishment of a transitional living unit at a convalescent facility
showed the importance and feasibility of home life and independent living for
hundreds of former respirator patients throughout the southwest. The programs
were generously supported by the March of Dimes for a multi-discipllined and
multiprofessional staff, supplementing meager public hospital resources.
Observing the ways in which medical complications were not inevitable fellow
travelers of "chronic Poliomyelitis and were preventable in early care
forestalling much disability. The remarkable adaptive self rehabilitation of
persons with polio (some of whom are today professional and technical
colleagues) afforded hundreds of examples of how severe disability can be
overcome. This was the basis for our concepts and later practices of restorative
medicine and then comprehensive rehabilitation. It included the effective
merger of knowledge from the the teamwork information sharing among multil-
disciplined and multi-professional practicioners and researcherss, results of
extensive basic science and clinical research and technical development, and
on site, day to day cooperation and participation of basic and clinical scientists.
Later, these experiences became the basis for the establishment and
operation of the Institute for Rehabilitation and Research (TIRR) in the Texas
Medical Center, 33 years ago. Many of the 15 respirator centers established
nation wide in the polio epoch became special rehabilitation units in major
national teaching hospitals and some large, public and not for profit private
rehabilitation facilities. These include nationally recognized facilities such as
Ranchos Los Amigos in Los Angeles, The Rehabilitation Institute of Chicago;
and major facilities in teaching hospitals at University of Minnesota, University
of Michigan at Ann Arbor, Boston at Harvard's related Childrens Hospital , The
Rusk Institute at New York University, Washington Univ. Hospital in Seattle,
George Washington Univ Hospital in D.C., Univ of Alabama in Birmingaham,s
Spain rehabilitation center etc.. These service, research and educational
centers have touched the lives of hundreds of thousands of severely disabled
people. Special Research and Training centers established in them ,
sponsored by the Office of Vocational Rehabilitation and now by the NIDRR
continue to demonstrate the immense social and economic value of the survival
of potentially severly disabled persons having had disease, defects and major
catasltrophic injuries from trauma. Their productivity as successful persons in
nearly all walks of life now includes the Spinal Cord and Head injured persons,
once considered to be hopeless. Special centers for Cystic Fibrosis, Muscular
Dystrophy, and Spina Bifida, and those with Multiple amputatios were also
developed at TIRR and elsewhere.
18
At TIRR and in the RT centers the research and educational develop-
ments have contributed to the field of acute medicine, restorative medicine, and
later comprehensive rehabilitation. These facilities with their medical school
relationships provided training for and demonstrated the major contributions of
many allied professionals. They contributed to the prevention as well as control
of disability, restitution of health, and independent living that also led to the
need for the National Institute for Disability and Rehabilitation Research, and
now a National Institute for Medical Rehabilitation Research at the NIH.
TIRR along with the Rusk Institute, the Ranchos Los Amigo, and the center
at the University of Minnesota and the University of Washington became the
forerunners of major rehabilitation research and educational resources under
the sponsorship of the Office of vocational Rehabilitation of the Dept of Health,
Education and Welfare. TIRR , Ranchos, the RIC and others were supported in
the development of rehabilitation engineering. In the past decade there has
been further support and major development of the field almost exclusively at
the Veterans Administration. The special RTC (Research and Training Centers)
and categorical injury rehabilitation Center concept was developed by Mary
Switzer at OVR, VRA. Special treatment centers for a network of Spinal cord
injury treatment and research centers, later Head Injury ones evolved. These
mergers of model care programs, research on disabling patient problems and
multi-professional and multidiscipline care needs, assistive systems etc. with
extensive educational efforts, (because of medical school joint sponsorship),
became unique national and international resources.
The development of many concepts, methods and technologies for
control of disability, their prevention through revision of acute medicine and
elimination of long term care needs through independent living has been of
major importance. They also influenced congressional action under former,
now deceased, Rep. Olin Teague's support in the House committee of Science
and Technology for the establishment of the first national center for
rehabilitation research, the NIHR and its successor the NIDRR first at the Dept
of Health Education and Welfare, then the Dept. of Education. A new NIH center
for Medical Rehabilitation Research has just ben established.
At first, Independent living was a particular and nearly unique focus of
the TIRR which built upon the earlier transitional living of those with Polio and
then the success of spinal cord injured persons in returning to active community
life. This produced one of the nations major impetuses for the development and
early support of the consumer directed Independent Living movement. Later
their demonstration S of the utility of such support was a major factor with the
establishment of a National Council for the Disabled active in promulgation of
the American Disabilities Act, and the funding of independent living in State
Vocational Rehabilitation programs. The support of the Robert Wood Johnson
Foundation for the evaluation and promulgation of greater community involve-
ment in selected model Independent Living Centers throughout the nation has
been crucial in the identification of ways to solidify this major thrust at restoring
catastrophically ill and injured persons to independent lifestyles. This activity
and others like them is providing ways and means for benefiting young and old
alike in a far more cost-effective way than "chronic" nursing home care.
19
Also my involvement in the NRC, NAS, IOM study and report on "Injury in
America" and "Disability in America" has provided much grist for this mill as a
generalization with some specifics on how to Rehabilitate our Disabled Health
Care System. The opinions and recommendations are of course my own.
Little additional commitment to the preceding analysis of problems and
solutions to rehabilitate our disabled health care system has been needed after
personally observing the outcomes of nearly 35,000 severely disabled persons
passing through the doors of TIRR. The great majority are now living
independently and are included in our society as productive human beings.
I am especially grateful to them for their inspiration and successes in life as well
as the devoted professional and technical staff of TIRR. They were supported in
their work by research and demonstration grants of the OVR, VRA, VA, NIDRR,
and NIH for support of computer applications in documenting care processes
and outcomes, and several private foundations including the Clayton fund, the
Robert Wood Johnson Foundation and many others. Help was always available
from friends and colleagues in most institutions in the world's largest "Texas
Medical Center". Ideas and solutions for restorative medicine and rehabilitation
also came from many outstanding and dedicated staff of the Departments of
HEW, Education, Veterans Adminis-tration, NIH and particularly the special
center's professionals. The early leadership of Baylor College of Medicine,
including Dr. Russell Blattner, Dr. Hebbel E. Hoff, Dean Stanley W. Olson M.D.,
and Kenneth Landauer, M. D. then medical Director of the March of Dimes; the
Jefferson Davis Hospital, the Wolff Home and the supporting Houston and
Texas Universities and especially persons from the University of Houston, Rice
University, Texas A. and M., and the NASA whose latter support of applied
physiology and local help for the development of modern instrumen-tation with
H.E.Hoff and L.A. Geddes was crucial for the research on reversible disturbed
physiology of the acutely ill respirator patient and for educational developments
at Baylor College of Medicine and TIRR. To past and present professional and
lay leadership of the Texas Medical Center, major foundations in Houston and
Texas such as the Dunn Foundation, the Will and Ben Clayton foundations the
M.D. Anderson foundation and others who provided for initial and later buildings
and research programs and particularly financial aid to allow services to many
persons without insurance or means for their restoration and rehabilitation by
such community leaders as Lamar Fleming Jr. and the trustees of the
MacAshan Charitable and Educational trust this epistle is fondly dedicated. It
would be remiss to fail to acknowlege the founders of TIRR, Leon Jaworski, Ben
Taub, Will Clayton, Lamar Fleming Jr. and later the invaluable support of Susan
and Maurice MacAshan and many other community leaders. The interest and
commitment for prevention and control of injury and disability by the inspiring
officers, staff, colleagues and friends of the Institute of Medicine, National
Research Council and National Academies of Science as well as the
perspectives on public health, acute, restorative and rehabilitation medicine.
20
I am especially indebted to my wife Jean Spencer, Ph.D, M.A., OTR, Lex
Frieden, Nita Weil, Mary Ann Board MSW, Kathleen DeSilva LLD. and others
who provided knowledge and impetus to the development of independent
living for the disabled locally and nationally; psychologist Shalom Vineberg,
Ph.D, for his view of our disabled persons and their need for inclusion in society
and their nobility of spirit, and my colleague contributors to TIRR'S successes in
medicine and comprehensive rehabilitation and research and education as well
the assistance and support of many colleagues at Baylor College of Medicine
and the University of Texas Health Science Center at Houston, all, will surely
have my eternal gratitude for their help and contributions of ideas and effiorts.
Houston Texas, Feb. 18 th, 1992.
Special references of relevance-
(1) "THE INCLUSION OF THE HANDICAPPED PERSON IN COMMUNITY
LIFE" International Conference Report, TIRR, April, 10-15, Houston,
Tx., 1980. Sponsored by Disabled American Veterans, and World
Veterans Federation, and The Institute for Rehabilitation and Research.
(2) "INJURY IN AMERICA", A Continuing Public Health Problem, IOM,
NATIONAL ACADEMY PRESS, Washington D.C., 1985.
(3) "THE TASK OF MEDICINE, Dialogue at Wickenburg". Kerr L. White, M.D.,
The Henry J. Kaiser Foundation, 1988.
(4) "The Second Fifty Years, Promoting Health and Preventing Disability",
IOM, NATIONAL ACADEMY PRESS, Washington, D.C., 1990.
(5) "DISABILITY IN AMERICA", NATIONAL ACADEMY PRESS, 1991.
(6) Assorted articles and reports are appended separately for some who may
have particular interest in them.
Relevant public documents and articles:-
17
A Personal Note: Many of the ideas in the preceding were derived from
the following experiences- planning and operating a critical care unit for 800
respirator patients and more than 2000 acute and "chronic poliomyelitis
patients in a special "care and research center" in an acute general hospital,
committed to service, research and education with the cooperation and support
of the City/County hospital in Houston, Texas in the 1950's; the Baylor college
of Medicine and the local chapter of the March of Dimes. Later, establishment of
a transitional living unit at the Wolff Home showed the importance and feasibility
of home life and independent living for hundreds of former respirator patients
throughout the southwest. The programs were generously supported by the
March of Dimes supplementing meager public hospital resources. Observing
the ways in which medical complications were not inevitable fellow travelers of
"chronic Poliomyelitis and were preventable, forestalling much disability. The
remarkable adaptive self rehabilitation of persons with polio (some of whom are
today professional and technical colleagues) afforded hundreds of examples
of how severe disability can be overcome. This was the basis for our concepts
and practices of restorative medicine and comprehensive rehabilitation. It
included the effective merger of multil-disciplined and multi-professional
practices, extensive research and technical development, and cooperation of
basic and clinical scientists etc.
Later, these experiences became the basis of the establishment and
operation of the Institute for Rehabilitation and Research (TIRR) in the Texas
Medical Center, 33 years ago. Many of the 15 respirator centers established
nation wide in the polio epoch became special rehabilitation units in major
national teaching hospitals and some large, public and not for profit private
rehabilitation facilities. These include nationally recognized facilities such as
Ranchos Los Amigos in Los Angeles, The Rehabilitation Institute of Chicago;
and major facilities in teaching hospitals at University of Minnesota, University
of Michigan at Ann Arbor, Boston at Harvard's related Childrens Hospital, The
Rusk Institute at New York University, Washington Univ. Hospital in Seattle,
George Washington Univ Hospital in D.C., Univ of Alabama in Birmingaham,
Spain rehabilitation center etc. These service, research and educational
centers have touched the lives of hundreds of thousands of severely disabled
people. Special Research and Training centers in them, sponsored by the
Office of Vocational Rehabilitation conltinue to demonstrate the immense social
and economic value of the survival of potentially severly disabled persons from
many disease, defects and traumatic origins. Their productivity as successful
persons in nearly all walks of life now includes the Spinal Cord and Head
injured persons, once considered to be hopeless. Special centers for Cystic
Fibrosis, Muscular Dystrophy, and Spina Bifida, Multiple amputees were also
developed at TIRR and elsewhere.
At TIRR and in the RT centers the research and educational develop-
ments have contributed to the field of acute medicine, restorative medicine, and
later comprehensive rehabilitation. These facilities with their medical school
relationships provided training for and demonstrated the major contributions of
many allied professionals. They contributed to the prevention as well as control
of disability, restitution of health, and independent living that also led to the
need for the National Institute for Disability and Rehabilitation Research, and
now a National Institute for Medical Rehabilitation Research at the NIH.
18
TIRR along with the Rusk Institute, the Ranchos Los Amigo, and the center
at the University of Minnesota and the University of Washington became the
forerunners of major rehabilitation research and educational resources under
the sponsorship of the Office of vocational Rehabilitation of the Dept of Health,
Education and Welfare. TIRR , Ranchos, the RIC and others were supported in
the development of rehabilitation engineering. In the past decade there has
been further support and major development of the field almost exclusively at
the Veterans Administration. The special RTC (Research and Training Centers)
and categorical injury rehabilitation Center concept was developed by Mary
Switzer at OVR, VRA. Special treatment centers for a network of Spinal cord
injury treatment and research centers, later Head Injury ones evolved. These
mergers of model care programs, research on disabling patient problems and
multi-professional and multidiscipline care needs, assistive systems etc. with
extensive educational efforts, (because of medical school joint sponsorship),
became unique national and international resources.
The development of many concepts, methods and technologies for
control of disability, their prevention through revision of acute medicine and
elimination of long term care needs through independent living has been of
major importance. They also influenced congressional action under former,
now deceased, Rep. Olin Teague's support in the House committee of Science
and Technology for the establishment of the first national center for
rehabilitation research, the NIHR and its successor the NIDRR first at the Dept
of Health Education and Welfare, then the Dept. of Education. A new NIH center
for Medical Rehabilitation Research has just ben established.
At first, Independent living was a particular and nearly unique focus of
the TIRR which built upon the earlier transitional living of those with Polio and
then the success of spinal cord injured persons in returning to active community
life. This produced one of the nations major impetuses for the development and
early support of the consumer directed Independent Living movement. Later
their demonstration S of the utility of such support was a major factor with the
establishment of a National Council for the Disabled active in promulgation of
the American Disabilities Act, and the funding of independent living in State
Vocational Rehabilitation programs. The support of the Robert Wood Johnson
Foundation for the evaluation and promulgation of greater community involve-
ment in selected model Independent Living Centers throughout the nation has
been crucial in the identification of ways to solidify this major thrust at restoring
catastrophically ill and injured persons to independent lifestyles. This activity
and others like them is providing ways and means for benefiting young and old
alike in a far more cost-effective way than "chronic" nursing home care.
Also my involvement in the NRC, NAS, IOM study and report on "Injury in
America" and "Disability in America" has provided much grist for this mill as a
generalization with some specifics on how to Rehabilitate our Disabled Health
Care System. The opinions and recommendations are of course my own.
Little additional commitment to the preceding analysis of problems and
solutions to rehabilitate our disabled health care system has been needed after
personally observing the outcomes of nearly 35,000 severely disabled persons
passing through the doors of TIRR. The great majority are now living
independently and are included in our society as productive human beings.
19
I am especially grateful to them for their inspiration and successes in life as well
as the devoted professional and technical staff of TIRR. They were supported in
their work by research and demonstration grants of the OVR, VRA, VA, NIDRR,
and NIH for support of computer applications in documenting care processes
and outcomes, and several private foundations including the Clayton fund, the
Robert Wood Johnson Foundation and many others. Help was always available
from friends and colleagues in most institutions in the world's largest "Texas
Medical Center". Ideas and solutions for restorative medicine and rehabilitation
also came from many outstanding and dedicated staff of the Departments of
HEW, Education, Veterans Adminis-tration, NIH and particularly the afore-
mentioned special center's professionals. The early leadership of Baylor
College of Medicine, including Dr. Russell Blattner, Dr. Hebbel E. Hoff, Dean
Stanley W. Olson M.D., and Kenneth Landauer, M. D. then medical Director of
the March of Dimes; the Jefferson Davis Hospital, the Wolff Home and the
supporting Houston and Texas Universities and especially persons from the
University of Houston, Rice University, Texas A. and M., and the NASA whose
latter support of applied physiology and local help for the development of
modern instrumen-tation with H.E.Hoff and L.A. Geddes was crucial for the
research on reversible disturbed physiology of the acutely ill respirator patient
and for educational developments at Baylor College of Medicine and TIRR. To
past and present professional and lay leadership of the Texas Medical Center,
major foundations in Houston and Texas such as the Dunn Foundation, the Will
and Ben Clayton foundations the M.D.Anderson foundation and others who
provided for initial and later buildings and research programs and particularly
financial aid to allow services to many persons without insurance or means for
their restoration and rehabilitation by such community leaders as Lamar
Fleming Jr. and the trustees of the MacAshan Charitable and Educational trust
this epistle is fondly dedicated. It would be remiss to fail to acknowlege the
founders of TIRR, Leon Jaworski, Ben Taub, Will Clayton, Lamar Fleming Jr.
and later the invaluable support of Susan and Maurice MacAshan and many
other community leaders. The interest and commitment for prevention and
control of injury and disability by the inspiring officers, staff, colleagues and
friends of the Institute of Medicine, National Research Council and National
Academies of Science as well as the perspectives on public health, acute,
restorative and rehabilitation medicine and especially my wife Jean Spencer,
Ph.D, M.A., OTR, Lex Frieden, Nita Weil, Mary Ann Board MSW, Kathleen
DeSilva LLD. and others who provided knowledge and impetus to the
development of independent living for the disabled locally and nationally;
psychologist Shalom Vineberg, Ph.D, for his view of our disabled persons and
their need for inclusion in society and theimobility of spirit ; and my colleague
contributors to TIRR'S successes in medicine and comprehensive rehabilitation
and research and education as well the assistance and support of many
colleagues at Baylor College of Medicine and the University of Texas Health
Science Center at Houston, all, will surely have my eternal gratitude for their
help and contributions of ideas and effiorts.
HoustonTexas, Feb. 18th, 1992.