Rehabilitation of people with severe mental disorders: lessons from healthcare reform.
As with physically-caused disabilities, rehabilitation of adults with mental disorders can be viewed in three ways: improving existing skills that have diminished; compensating for lost skills that are permanently lost; and learning new skills that would have ordinarily been learned during the stage of life when the person was experiencing the disorder. For example, a person distracted by hallucinations may need rehabilitation in order to improve concentration and organization to prepare a meal that is well-balanced and cooked in such a way that all the component parts can be served in the proper order. Another person, disabled by a physical disorder, may also need rehabilitation in food preparation, once all the necessary assistive devices are in place, in order to improve use of the devices to facilitate meal preparation. Both persons are receiving rehabilitation in food preparation, an instrumental activity of daily living (IADL).
A person disabled by a mental disorder for full-time work as an executive assistant who, because of hallucinations, can no longer concentrate sufficiently to carry out complex assignments may receive rehabilitation to become a part-time cashier in a thrift shop. A person disabled by a physical condition--such as a leg amputation--who can no longer work as a lumberjack, may be rehabilitated to acquire the necessary skills related to a sedentary job. In both cases these skills compensate for abilities that are permanently lost.
Instances of people who utilize rehabilitation to gain skills not learned since the onset of the disorder both for people with physically-related and people with mentally-related disabilities would be those who could not develop the range of age-appropriate social skills. There is an old story about a boy who was diagnosed with a serious heart condition and told to remain in bed rest. Many years later, as a man, he was told his condition was ameliorated and he could resume a normal life style. He is said to have responded: "I can't! I don't know how to dance!" Recreation and the associated social skills are part of a normal life. People experiencing a long-term episode of mental disorders during late adolescence may not acquire age-appropriate social skills during that time. When the episode clears, they may use rehabilitation to learn and practice skills that will assist engaging in fulfilling relations with their peers.
To summarize, this opening intends to make two main points. First, rehabilitation serves at least three purposes: improving diminished skills, compensating for lost skills, and learning skills that were not learned. Second, rehabilitation for people disabled by mental disorders is virtually the same as for those with other disabilities in its goals (e.g., maximum autonomy with maximum quality of life) and the overarching skills that need rehabilitation (e.g., meal preparation, use of a stove), although the techniques vary (e.g., use of assistive devices for cooking vs. proper sequencing and timing of food preparation).
Rehabilitation of the Disabilities of Adults with Mental Disorders
Rehabilitation for adults with mental disorders has been categorized in various ways. An article in preparation by staff of the World Health Organization (WHO) Division of Mental Health classifies rehabilitation of people with mental disorders as psychosocial rehabilitation (Ustun et al. . This manuscript explicitly states that rehabilitation is targeted at the consequences of disorder. Programs in rehabilitation include activities of daily living (ADL's), independent living skills training, vocational rehabilitation, and social skills training. In a recent unpublished review of the research literature on outcome assessment for people with severe mental disorders, commissioned by the National Institute of Mental Health (NIMH), Cook organizes the review into three categories of rehabilitation: vocational rehabilitation; residential rehabilitation; and social skills training (1992).
In apparent contradiction to the opening statements about the similarities between the kind and body in terms of rehabilitation, the above labeling of the categories of rehabilitation for people with mental disorders may imply a difference in rehabilitation for people with mentally-based vs. physically-based disorders. This is not the case. Mental disorders characteristically are associated with certain disabilities and physical disorders with others. For both groups, however, the characteristic disabilities are not unique to the disorder. For example, to know a person's disability does not necessarily inform the observer what disorder is the cause. Knowing that a person has limited mobility and may be incapable of walking does not tell you whether the cause is spinal cord injury or catatonic schizophrenia. A person may experience a "disability bed day," spending the day in bed because of the effects of hypothyroidism or depression. Knowing that a person has a certain disability does not convey the cause of the disability. The converse is also true: knowing a person's disorder does not necessarily predict the person's disability.
In many of the major national surveys, disability caused by severe conditions is assessed by ADL's. ADL's are mostly reflected in questions about the ability of an individual to use the toilet, attend to one's hygiene, and get out of bed. Clearly, no civilized society would condone a situation where a person is left to lie in bed without the capacity to get to the toilet. Yet, this is not the situation--for the most part--in which the disabilities of persons with severe mental disorders are manifest. As a generalization, adults disabled as the consequence of a severe physical disorder, once out of bed, toiletted, bathed and dressed, are capable of preparing meals, shopping, paying bills, taking medications, and socializing when the appropriate assistive devices are in place. In general, this is not true of people disabled by severe mental disorders: they are capable of getting out of bed, toiletting, bathing, and dressing themselves (although perhaps at the margin of normative standards). Severe mental disorders characteristically result in decrements in social relations, work, recreation, appropriate behavior, and IADL's. IADL's include such activities as housekeeping, food preparation, use of transportation, medication management,
and budgeting. While these activities. may not initially appear to be as basic to daily life as ADL's, the characteristic activities affected in people with severe mental disorders are fundamental to community life outside an institution.
Rehabilitation and Reforming Healthcare
Understanding the similarities and distinctions between rehabilitation for adults disabled by mental and physical disorders was stimulated in the planning for federal healthcare reform. The Administration's now defunct Health Security Act planned to cover rehabilitation (and habilitation) for people with disabilities under the Long-Term Care benefits. According to staff of the Congress' Office of Technology Assessment (OTA), the intent of the Administration's healthcare plan was to provide services to the very needy, the most disabled among the population, in order to keep them out of institutions and in the community. People less severely disabled but still in need of care to remain in the community will continue to receive services under the auspices of state programs and under existing financial arrangements such as Medicare, Medicaid, and private disability insurance plans.
Although no longer under Congressional consideration, the Administration's Health Security Act continues at the federal level as the basis for future planning and as the underpinning of a study being conducted by the Congress' OTA. For the above stated reasons, it is worth reviewing the definitions of disability in the former Senate Bill 1757, which reflected the Health Security Act, and examining the issues they raise.
Senate Bill 1757
Section 2103 of the Senate bill defined people with disabilities as:
"(1) INDIVIDUALS REQUIRING HELP WITH ACTIVITIES OF DAILY LIVING.--An individual of any age who--
(A) requires hands-on or standby assistance, supervision, or cueing [sic] ... to perform three or more activities of daily living [i.e., eating, toiletting, dressing, transferring, bathing ([sections] 2103(c))], and
(B) is expected to require such assistance, supervision, or cueing [sic] over a period of at least 100 days.
(2) INDIVIDUALS WITH SEVERE COGNITIVE OR MENTAL IMPAIRMENT.--An individual of any age--
(A) whose score, on a standard mental status protocol (or protocols) appropriate for measuring the individual's particular condition specified by the Secretary, indicates either severe cognitive impairment or severe mental impairment, or both;
(i) requires hands-on or standby assistance, supervision, or cueing [sic] with one or more activities of daily living,
(ii) requires hands-on or standby assistance, supervision, or cuing with at least such instrumental activity (or activities) of daily living related to cognitive or mental impairment as the Secretary specifies, or
(iii) displays symptoms of one or more serious behavioral problems (that is on a list of such problems specified by the Secretary) which create a need for supervision to prevent harm to self or others; and
(C) whose [sic] is expected to meet the requirements of subparagraphs (A) and (B) over a period of at least 100 days."
The bill went on to define individuals disabled by severe or profound mental retardation and severely disabled children. Cognitive impairment in the context of this bill was understood to mean delirium and/or dementia, according to staff of the Department of Health and Human Services (DHHS). The above definitions raise at least five issues for continued consideration.
First, the definition for individuals requiring help with ADL's does not specify that the individual have a health condition. While it is difficult to imagine that the inability to eat, toilet, bath, dress, or transfer might-be caused by anything other than a health condition, perhaps the following hypothetical example of a person from a less industrialized and less technological culture will help. This person may have other means of eating (i.e., other than with forks, spoons, or chopsticks), different types of clothing (e.g., loin cloths), and alternative means of disposing of human waste materials than our toilets. In our society, the person would not be performing these activities according to our cultural norms and might possibly need hands-on or standby assistance, supervision, or cuing to do so but would not be classified as disabled.
Outrageous as the above example is, the lack of a statement about the disability being associated with a health related condition in this definition becomes startling in juxtaposition to the second definition for people with severe cognitive or mental impairment. This definition requires not only that a mental or cognitive impairment exist but that it be rated as severe on a standard protocol as well. No requirements for documentation of a physical disorder are mentioned in any definition of disability in the bill. Clearly, consequent regulations or administrative procedures to implement this definition would have assured that the lack of ADL skills is related to a health condition.
Second, a severe disorder or severe impairment does not necessarily lead to a disabihty requiring rehabilitation. For example, a person may have a severe case of pneumonia. Once recovered, the person should have no remaining disabilities. During the course of the illness, the person will be in bed (a disability bed day) and most likely not bathe or dress. For those days the person would be considered disabled, but this "disability" would neither last beyond the episode of illness nor require rehabilitation. An individual diagnosed with a Brief Psychotic Disorder (DSM-IV, 1994), a severe mental disorder identified by either having delusions, hallucinations, disorganized speech, or grossly disorganized or catatonic behavior lasting between 1 day and 1 month, will have a full return to his/her premorbid level of functioning. Again, as severe as the disorder itself is, the disabilities resulting from the disorder and experienced during the episode may also be severe but not outlast the episode and not require rehabilitation.
Third, if disabilities can be viewed hierarchically, then deficiencies in ADL's and IADL's may be considered the most severe. It must be assumed that it is the severity of the disability that is truly important here, not the severity of the disorder. The disability, not the disorder itself, will be addressed by rehabilitation. The fact that the legislation requires a 100-day period as a minimum projection for the length of the disability wisely precludes eligibility for people with severe disabilities that are short-lived and not in need of rehabilitation, as in the examples above.
Fourth, the differences between the two Senate Bill 1757 definitions do not intuitively appear to be equivalent. The first definition applies to people with physically-based disabilities as well as to people with mentally-based disabilities. The second applies only to those with mentally-based disabilities. In the first definition for persons requiring help with ADL's the criterion is solely based on disability (although, as noted above, it is assumed that a health condition is the source of disability), while the second definition for people with severe cognitive or mental impairment requires a combination of a measure of mental functioning and ADL or IADL. In the second definition neither the standard for the mental status measure nor the number of IADL's are set forth, creating two potential opportunities for inequity when the definition is put into operation. On the positive side, for people with severe impairment there is recognition that these are less likely to be limited in the area of ADL's and likely to be limited in IADL's. On the negative side, that there is no definition for IADL's in the bill as there is for ADL's, along with a referral to the Secretary for specification, additionally detracts from the input provided by the clinical/rehabilitation experts who drafted the long-term care benefit and defers to policymakers for detail.
The bill reflects the perspective that IADL's might be considered higher in the hierarchy of disabilities. That is, they may be considered less severe than ADL's. Thus, those with deficits in IADL's might be inappropriately provided benefits without an additional screen to assure equivalency Furthermore, a frequency count of IADL disabilities would not necessarily appropriately reflect the severity of disablement as does a frequency count of ADL's. This section of the definition stands as an example that the Health Security Act was intended as an overarching plan with the details to be fleshed out.
Finally, there is no definition of the term "impairment" in the bill. The term has both generic, everyday-use meaning as well as several taxonomic and federal program meanings. For example, impairment can be commonly used to mean "limitation." The usage is best appreciated in the DSM-IV instructions for rating Global Assessment of Functioning Scale that state: "Do not include impairment in functioning due to physical (or environmental) limitations" (p. 32). Hence, the term "functional impairment" (i.e., functional limitation) enjoys widespread use in the United States synonymously with "disability" and includes ADL's and IADL's. In addition, the WHO'S International Classification of Impairments, Disabilities, and Handicaps (ICIDH) defines impairment thus:
"In the context of the health experience, an impairment is any loss or abnormality of psychologicall physiological, or anatomical structure or function" (WHO, 1993, p. 47).
Furthermore, federal programs (which have 43 different definitions of "disability" (Kemp, 1991; Weaver, 1991)) have other meanings attached to the term "impairment." For instance, the Social Security Administration's two disability programs (Social Security Disability Insurance and Supplemental Security Income) use "impairment" as a synonym for "disorder" (U.S. DHHS, 1992). It is assumed that this was the case in the bill.
Identification of the types of disabilities and the causes of disabilities have significance when planning services for people with both physical and mental disorders. More IADL-responsive rehabilitation services are required for people disabled by mental disorders and more ADL-responsive rehabilitation for those with physical disorders. To date, there are no nationally generalizable empirical data on disability-based rehabilitation services. Among other practical applications, research in this area would assist federal and other governmental and nongovernmental planners and policymakers to understand the implications for long-term care benefits as healthcare systems continue to evolve. Research is needed on the dynamics, process, outcome, organization, and cost-effectiveness of rehabilitation for people disabled by mental disorders and, comparably, for those with physical disorders. Among federal agencies, research support is available from the National Institute of Mental Health, the Center for Mental Health Services, the National Center for Medical Rehabilitation Research, and the National Institute on Disability and Rehabilitation Research to investigate such rehabilitation issues.
Recent federal activities for reforming healthcare and the national interest they continue to engender support the significance of rehabilitation as an integral part of the healthcare system, notably for people with severe mental disorders. Planning activities intended to implement the eligibility criteria for the long-term care benefits in healthcare reform also highlighted many conceptual issues regarding disablement. What also becomes apparent in view of these activities is that there is a paucity of research to provide an empirical base for both the projections of the divers earray of people eligible for rehabilitation services and an understanding of the dynamics, structure, and financing of cost-effective rehabilitation within the existing healthcare system for people with severe disabilities resulting from physical and/or mental disorders.
1. American Psychiatric Association (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. 2. Cook, J.A. (1992, February). Outcome assessment in psychiatric rehabilitation services for persons with severe and persistent mental illness. (Available from the National Institute of Mental Health, Division of Epidemiology and Services Research, Services Research Branch Room 10C-04, 5600 Fishers Lane, Rockville, MD 20857. 3. Foderaro, L.W. (1994, November 13). Albany seeks managed care for mentally ill on Medicaid. New York Times, p. 45, 51. 4. Kemp, E.J. (1991). Disability in our society. In C.L. Weaver (Ed.), Disability and work: Incentives, rights, and opportunities. Washington, DC: The AEI Press. 5. Senate Bill 1757, 103rd Congress, lst Session. Health Security Act. November 20,1993. 6. U.S. Department of Health and Human Services (1992, May). Disability evaluation under Social Security (SSA Publication No. 64-039). Washington, DC: Social Security Administration. 7. Ustun, T.B., Cooper, J.E., Van Duuren-Kristen, S., Kennedy, C., Hendershot, G., & Sartorius, N. (in press). Revision of the ICIDH: Mental health aspects. International Journal of Disability. 8. Weaver, C.L. (1991, January 31). Disabilities Act cripples through ambiguity. The Wall Street journal. 9. World Health Organization (1993). International classification of impairments, disabilities, and handicaps. Geneva, Switzerland: Author.
Dr. Kennedy is Assistant Director for Disabilities Research, Division of Epidemiology and Services Research, National Institute of Mental Health, Rockville, MD.
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|Date:||Dec 22, 1994|
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