The term "Medical Needs" can first of all be viewed within the context of general community medical resources and their availability to the population at large, including the multiply handicapped person. This area of interest is a broad one and involves matters of economics, pattern and delivery of medical services within the community. It involves social factors, population distribution, the role of the hospital in the community. It involves transportation to and from the source of medical services. It appears to me that regardless of the pattern of distribution of medical services within the community, an adult with multiple handicaps finds it more difficult to obtain these services than the rest of the population. There are many reasons for this, which will not be elaborated upon at this point, but will undoubtedly be dealt with during this conference. I will plan to deal with the subject of medical need in the more restricted sense of Rehabilitation Medicine. Even this covers a wide spectrum, since rehaiblitation can be equated in many instances with total or comprehensive care, and it often becomes the responsibility of the physician to coordinate the wide variety of services necessary for the success of a satisfactory rehabilitation plan. Adequate medical care involves, firstly, a resource for basic medical care for the handicapped person, just as for his non-handicapped peer. Such an individual is just as liable to all the ailments and illnesses that beset youth in general. The respiratory infections, skin ailments, bowel upsets and irregularities, menstrual difficulties, injuries minor and major, will probably offer no more problems in the diagnosis and management than in the non-multiply handicapped. In many programs for the young handicapped, pediatricians assistance will be available to provide this necessary component of care during growth and development. When the adolescent leaves these programs, or, more correctly, when the programs leave him, a hiatus often occurs. It would be hoped at this point that the young adult handicapped could be absorbed into existing systems of family and community medical care. If there were some way that agency health records could be centralized or transferred for the patient's benefit, it would be ideal. Often this is not the case. So often we see the pattern of split medical responsibility for care, where an agency assumes responsibility for a large segment of care relating to a major disability, but when the child becomes ill with fever or abdominal pain, the family physician is called, a physician who has had little opportunity and, perhaps c. occasion, little interest to become informed about the complexities of the child's multiple problems. Thus, are planted the seeds of later difficulties -- the young adult, now removed from the protected atmosphere of an agency umbrella of rehabilitation care with no continuity of rehabilitation care or planning, no current records, and often a deteriorating physical condition. An answer to this need for basic and supportive medical management is difficult to find. Physicians in the private practice of medicine could supply some of the need. The community hospital, through its continuing care or home care programs may play a role. The medical center, through its community health center extension programs may have a big part to play. And, private agencies, through home programs or community centers, will continue to spearhead much of the thrust and development in this sphere. Probably we are talking about a sharing of responsibilities. This type of continuity of care demands superb communication, sharing of information, pooling of resources, and probably centralization of records. I have dealt at some length with this very basic matter of service and program and delivery of service, and communication because it represents a significant and continuing problem. A case referred to me just a few weeks ago typitied the problem in very clear terms. He was a 13 year-old boy referred to me for "brace review and recommendations." A quick review of some of the difficulties indicated: 2. 3. 4. 5. He has a seizure disorder, reasonably controlled by medication. He had squint problems and other ocular difficulties. He presented with a severe learning disorder due to a combination of His motor handicap was severe. He was unable to ambulate and the braces 6. He was receiving an inadequate education program. I was surprised that the parents had no local physician or surgeon at all currently responsible for guidance, despite residence in a city of 500,000. He had been treated in a private agency clinic for two to three years since the age of seven. He had four surgical procedures on his extremities and the most recent was four years previously. He had two admissions to two different residential rehabilitation centers. But, no on-going program of medical guidance, no social service guidance or counselling of any kind for the parents. What lessons can be learned from this? It leads me to the second segment of my address the clustering of services we categorize as rehabilitation, how they can best be mobilized and made available to the patient and his family. - The problems we face together with the parents and the young adult handicapped person can be categorized for ease of discussion into the well known schema of: Medical Social/Family/Community Recreational I shall limit my discussion to medical and to recreational facets dependent on physical performance, recognizing that a total program, a comprehensive approach, demands an interplay of all these factors, rather than fragmentation. No doubt, however, there will be ample discussion during the conference, regarding coordination of services. The term multiply handicapped comes to mind when we consider some of the difficulties encountered by the severely handicapped person. The term multiple handicap requires some preliminary consideration before we discuss medical needs of the multiply handicapped person. The distinction should be made between multiple system involvement and multiple disability. I believe they are often confused. Either type of involvement may render the individual extremely handicapped, but in different ways. For example, muscular dystrophy involves a very specific part of the musculo-skeletal system -- the muscle fiber. Its primary manifestation is weakness. The disability may be mild or profound. The disability spectrum of muscular dystrophy may be considered multiple, in that respiratory function, cardiac function may be severely affected, as well as the extremities and trunk. In rehabilitation terms, the functional disabilities in activities of daily living may involve every aspect of basic independence, from personal feeding to mobility. External life support may be necessary in the case of severe respiratory involvement. In complete contrast to this pattern of disability, consider the Rubella syndrome, which may affect the cardio-vascular system, central nervous system, particularly the visual and auditory pathways and involve intellectual function. It probably matters little to us which of the above mechanisms lead the handicapped person to our attention. Rather, we should be alert to the need of management in breadth, as well as in depth. Many treatment programs of excellence have been made available in depth, programs which have lacked flexibility and breadth, to the degree that they have been unavailable to many young people with multiple handicaps. Examples of such programs come to mind, because I personally was involved in a few. I think of programs for the deaf. Those of you familiar with these programs know that until very recently, relatively no programs were available for the multiply handicapped deaf child, such as the cerebral palsied de af. Residential schools for the deaf had never been designed to meet the needs of a child with mobility needs, or self-care dependence. Programs designed for the cerebral palsied could do little justice to the special education needs of the deaf. To meet this complicated but very urgent need, improved interdisciplinary communication, breaking down of traditional professional barriers, and consolidation of resources were all necessary. A lot more needs to be done. - 33 Such examples are plentiful, and I make these points simply to underline a need for broad evaluation of the physical and medical needs of the multiply handicapped. Many of the problems we shall talk about in this conference relating to the teenaged and young adult have their beginnings in childhood programs which were fragmentory, narrow, and perhaps, with an objective that was too short-term in scope. - It is so necessary when we plan rehabilitation programs for the multiply handicapped to look towards both the immediate, intermediate, and long-term objectives. Many of us, so engrossed with our own personal programs and the immediate objective, neglect to ask the all-important question what is our expected goal for this individual 5 10 - 20 years hence? What are the realistic expectations? We must ask ourselves in this conference how much of the needs and the real problems of handicapped youth could have been prevented, or very materially lessened by early diagnosis, early comprehensive planning, and the setting of realistic goals? MOBILITY Problems of mobility are central to the whole subject of handicapping in neuromuscular or musculo-skeletal disorders. Much effort is directed in infancy towards the development of mobility so that the young child can explore his environment. At some point in the treatment plan, the question of ambulation will arise, and there may begin a program that will involve many hours of stretching, muscle re-education, therapeutic exercises, orthopedic surgery, braces and crutches. All of this effort is most justified, if the attainment of the goal seems at all feasible. The interplay of influences affecting this outcome, however, is most complex and a decision may be difficult to reach. Staff may find it hard to give up, long after the patient and family have given it up as a bad job and this is a good example of where family attitudes and patient motivation and hard facts of the reality in home and community living, may and should prove to be the decisive factor in coming to a medical or physical decision. Without wishing to become involved in the subject of "methods of treatment," it seems evident to me that success in personal mobility skill will probably depend on a flexible attitude and consideration of the following factors. TABLE The type and degree of severity of the motor disorder. Utilization of a wide variety of therapeutic exercise approaches. Orthopedic re-constructive surgery. Neurosurgery Judicious use of splints, braces and assistive devices. Crutches, walkers with or without modifications to adapt to specific disorders. Assessment of personal factors of attitudes, intellectual motivation. Consideration of architectural factors in home, school and recreational settings. 34 In many cases, independent ambulation will prove an impossible objective and if this decision is reached, all efforts should be directed at attaining wheelchair independence. Despite all of this, we will frequently meet the teenager, in which the matter has not been yet resolved. Braces may still be worn and the purposes and benefits of the braces may be unclear. The answer to this question may hinge largely on the previous history and whether, in fact, adequate and thorough training was available. If all the factors are weighed, it should be possible to make a decision. At this late stage, a significant influence will have emerged, namely, the patient's own ability to demonstrate his interest or desire to proceed on a plan of ambulation training. In conclusion, it must be emphasized that within the term "ambulation" there I would like to leave this discussion by citing the example of a young child who came up for discussion in our group recently. A six year-old boy born with spina bifida, partially paralyzed in his lower extremities, with arrested hydrocephalus who was rendered blind at the age of three during an acute exaccerbation of hydrocephalus, living in a remote rural area, a member of a large family. In determining his pre-school needs, it seemed evident that this multiply handicapped blind child is more dependent in a wheelchair, in which he has no orientation whatever, than if we place him in braces and crutches, even though it would appear, on first review, that a blind paraplegic boy would be considered an unfeasible candidate for bracing. Every consideration should be given to the matter of wheelchair prescription in the multiply handicapped person. Attention to correct size, for comfort and posture, with necessary further support in the case of spine weakness is fundamental. The critical matter of transfer techniques and skills should influence the choice of side arms and foot rests. Brake adaptations in the case of deficient reach, considerations of type and size for those who may be using the chair out of doors, are items to be considered when the prescription is being formulated. When one considers that wheelchairs have as much as 40 options such as modifications in arm rests, seat heights and widths, foot rests, wheels and brakes, and that many handicapped persons spend most of their waking hours in wheelchairs, it appears surprising how casual an approach is often exercized in the critical matter of wheelchair prescription. External power for wheelchairs is not new. Electrically powered chairs are |