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The Second Milestone

A REPORT ON THE

NATIONAL CONFERENCE ON LIFE ENRICHMENT NEEDS OF PERSONS WITH
MULTIPLE HANDICAPS WHO ARE SOCIALLY AND CULTURALLY DEPRIVED

Alexandria, Virginia, March, 1970

A recent nation-wide analysis of services available to cerebral palsied persons of all ages and degrees of involvement corroborated the frequently expressed opinion of professional personnel in this field that programs to aid the non-employable teenagers and adults and enrich their lives are, generally, non-existant. The few programs that have been established are spotty in geographical distribution and usually limited in scope. (1) The importance of remedying this situation has been recognized for some time but, to paraphrase Mark Twain, "Everyone knew about the problem but few people were doing anything about it."

The

Medical, educational and some recreational facilities have long histories of working with pre-school and educable or trainable school-age children. Many organizations are comfortable when working with employable cerebral palsied persons. "in-betweeners," those out of school and not employable, have "fallen between the cracks" so far as programs geared to their needs are concerned. This has been due, largely, to a tacit although usually unspoken admission that these people present different and in many ways more difficult problems, both in mobilization of resources and development of methodology to organize and sustain activities. They do not have the emotional appeal of the crippled child nor the economic attraction of the rehabilitated young adult. Professional staff, due to lack of precedent and experience, move with less assurance into programs for this group.

The "National Conference On Life Enrichment Needs Of Persons With Multiple Handicaps Who Are Socially And Culturally Deprived" was called for the purpose of ascertaining the scope of this problem and recommending means of correcting it. The Conference represents a first step in a determined effort to bring this neglected group within the aegis of comprehensive services to the handicapped.

The "Target Population"

The "Target Population" was identified as the hard-core group of teenagers and young adults who, because of multiple neurological handicapping conditions, cannot be employed where they presently reside, i.e., "The Disemployed. Many have the further handicap of living in ghetto areas where there is, in general, a higher incidence of brain damage and where a special need exists for programs which offer opportunities for achievement of dignity and a sense of purpose.

It is unrealistic to expect that many of these individuals will become gainfully employed in competitive society. A few might, ultimately, be candidates for sheltered workshops as these facilities expand their capability for serving persons with multiple handicaps. However, except for those residing in or close to large urban areas, the provision of adequate sheltered employment opportunities for severely disabled persons cannot be anticipated in the forseeable future.

Additionally, the "Target Population," because of multiple handicaps, has generally not had the advantages of normal experiences in growth and development and are, therefore, largely cut off from the social and cultural activities of their

communities.

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Sporadic and uncoordinated efforts to ameliorate the conditions described have been and continue to be made by various agencies. Most of these activities fall within the general context of "Recreation." A broader approach is needed, one that includes recreation as a componant and, in addition, comprehensive physical care, developmental and experiential activities, personal and inter-personal relationships all focused on the goal of assisting each individual to achieve his maximum potential within his own community. The benefits to be derived would be shared by the individual and his family as well as by a society which has recognized that institutionalization of the severely disabled provides neither a humane nor an economical solution to his care problems.

By delineating guidelines for the development, dissemination and utilization of methods, materials and media which may be used in a variety of communities to help the multihandicapped become participants in and feel accepted by society as worthy and contributing members, the Conference has provided an opening wedge in the effort to combat previous neglect of this segment of the disabled population. Preparation for the Conference

Four areas of concern were recognized as strongly influencing the lives of the target population. Each contributes to the exclusion of these persons from normal activity. They are:

Environmental factors

Psychological and emotional factors
Physiological factors

Factors related to communication and perception

To provide participants with a common basis for relating their considerations to these factors, position papers prepared by recognized authorities in each field were circulated in advance of the meetings. (2) Four workshops were organized, to one of which each participant was assigned. The workshops were charged with responsibility for considering the problems and needs of the target population in one of the following areas: Physical Care, Education, Recreation, Social and Emotional Factors. As prior preparation each participant was assigned responsibility for reading the four position papers, and, in addition, for becoming thoroughly familiar with the contents of one, to enable him to relate particularly to the thinking of that writer during the workshop deliberations.

As examples of programs currently serving some segments of the target population, reports on UCP programs for teenagers and adults that have been developed in Denver, Colorado, New York City and Pottsville, Pennsylvania and a program for adults operated by The Friends of Parents of Retarded Children in Bridgeport, Connecticut, were included in the advance literature.

The Conference in Operation

Participants in the Conference included representatives of every major agency, both public and private, providing services or concerned with the needs of the disabled in the age group under consideration. Board and staff members, volunteers and professional consultants were included. (3) Their competance had been demonstrated in the fields of Administration, Audiology, Community Organization, Education, Law, Medicine, Nursing, Occupational Therapy, Physical Therapy, Psychology, Public Relations, Religion, Social Work, Speech Pathology and Therapy and Vocational Services.

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Their affiliations were with universities, federal agencies, state and local public agencies, national and regional organizations, rehabilitation centers, churches, legislatures, residential facilities, private health, welfare and recreation agencies and UCPA national, state and local affiliates.

The Conference consisted of four Plenary Meetings and five workshop sessions. Each workshop was requested to develop;(a) suggestions for programs in its assigned field which could help severely handicapped teenagers and adults to cope with the basic factors discussed in the position papers; and (b) curriculum ideas and materials for program development, with specifics for their implementation.

Supplementing the workshop sessions, one period was assigned to presentations by a resource panel on subjects that would contribute to the life enrichment of the target group. Representatives from the Library of Congress presented the "Talking Books" program now available to physically disabled as well as to visually disabled persons. Members of the national staff talked on UCPA's Equipment Manual which contains pictures and descriptions of many types of equipment designed to reduce the limitations imposed by a disability and presented a demonstration of adapted equipment already in use in some centers, that has proved of value in assisting severely handicapped persons become more socially acceptable and selfdependent. (4)

I. PHYSICAL CARE

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SUMMARY OF WORKSHOP FINDINGS AND REPORTS

Although the physical well-being of a disabled person is basic to participation in all activities, there is a recognized tendency to belittle the importance of diagnosis and physical care for the adolescent and young adult. A continuum of medical services is as important for the handicapped as for the non-handicapped. The picture of medical care terminating with adolescence due to agency or medical center policy, and totally unrelated to the needs of the individual, is well known.

A resource for basic medical care is essential. Handicapped individuals are liable to all the ailments and illnesses that beset youth in general. Their respiratory infections, skin ailments, bowel upsets and irregularities, menstrual difficulties, minor and major injuries, will probably offer no more problems in diagnosis and management than in the non-multiply handicapped. Pediatrician assistance is usually available to meet these components of care during childhood years. When the individual, having become an adolescent, leaves the programs established for children or, more properly, when the programs leave him, a hiatus often occurs. At this point the young adult handicapped should be absorbed into existing segments of family and community medical care.(5)

A profile method of assessing disability is essential for this age group so that management in breadth as well as in depth may be provided. Lacking this, the multihandicapped frequently fail to receive attention for their many problems. The cerebral palsied adult with deafness presents a case in point. Most programs for the cerebral palsied will not meet the needs imposed by his deafness and few programs for the deaf can meet needs resulting from his cerebral palsy. In such com plicated situations improved interdisciplinary communication, a breaking down of traditional professional barriers and consolidation of resources are necessary.

Problems of mobility and the individual's self-concept regarding it must underlie professional thinking in many other areas. Where independent ambulation has been proved unfeasible, efforts should be directed to attaining wheel-chair independence. (5)

Careful consideration should be given to the matter of wheel-chair prescription. With more than forty options for possible adaptations, including such variables as different arm rests, seat height and width, foot rests, wheels and brakes, the wheel-chair in which a handicapped person will spend most of his waking hours should be correctly fitted to the person and his needs. Electrically powered chairs are commercially available. If a person with a motor handicap can safely and readily control speed, direction and braking, use of such external power can provide for the disabled a unique and exhilerating freedom while relieving relatives and friends of the need to be always on hand. (5)

In complicated disabilities a close association of engineering and medicine to meet some of the problems of "human engineering" can enrich the lives of the multiply disabled. Some applications of this principle are already taken for granted. for example, TV remote control, remote control of bed height and operation, and devices to reduce upper extremity disabilities. Studies in the adaptation of certain items developed for space exploration, such as new concepts regarding structural materials and design of braces to improve flexibility, function and comfort, are exciting potentials that can result when engineers turn their attention and their skills to the solution of human motor problems.

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Principles Basic to the Planning of Services

The workshop on physical care developed the following basic principles on which to plan services:

a.

b.

C.

d.

A person's self-concept is related to his body image and his feeling of
self-worth.

His body image and self-concept are tied to his ability to function in the areas of personal care, communication, mobility, interaction with others and in work or other activities satisfying and rewarding to the individual.

The multihandicapped need a variety of services to help them achieve maximal functional ability, as well as a variety of life experiences to minimize social and cultural deprivation.

In planning programs for the multihandicapped teenager and adult who have been denied enriching life experiences, several factors stand out as of extreme importance:

1. All concerned and involved must remember that the individual is a dynamic, changing organism.

2.

3.

4.

Goals should be based on periodic assessment, should be both short and long-range and sufficiently flexible to permit changing as the individual changes and/or growth and development occur.

The individual should be involved as early as possible in the establishment of goals and the planning of his program of activities.

Underlying all planning must be the ever-pervading philosophy that creativity, imagination and ingenuity must be used constantly to tap into and unlock undeveloped potential.

Factors Which Limit Achievement

The multihandicapped teenager and young adult has the same basic right to quality health care as any individual. Too many times this quality care has not been provided because he has not been appropriately identified as a person in need of health care, or he has been inaccurately categorized as to his health care needs and physical potential and arbitrarily placed in the wrong setting to receive total health services. Health care may be segmented, fragmented and uncoordinated, or even not accessible. Sufficient and appropriate health manpower has not been available. Unrealistic goals have been set, with the result that the patient and/or a family member have not been involved in setting the goals or planning the program and have not understood its objectives and, in discouragement or desperation, the patient discontinues his participation.

Providers of service may lack "know how" for effective use of measurement tools for the proper assessment of strengths, weaknesses or deficits of the individual. Also, available measurement and evaluation tools are frequently not adequate for the provision of meaningful data for program planning. Lack of uniformity in content and quality of medical records creates many problems. Poorly kept, inadequate or unavailable records have necessitated repetition of tests, work-ups, assessments and