1 The Second Milestone Forward In 1968 United Cerebral Palsy Associations, Inc., published a brochure, "The IHF Plan The Individual With Cerebral Palsy and His Family."(1) Based on information supplied by UCPA affiliates across the country through a study conducted by the national organization, the brochure projected a plan to assist affiliates to recognize needs and establish programs, in breadth and in depth, to serve the cerebral palsied in every community. Priorities were suggested to meet these needs which were most commonly neglected. A glowing example was found in the great lack of services for persons with severe and multiple disabilities. UCPA has passed its first milestone on the road to provision of complete ser vices for persons with cerebral palsy. The activities of its more than 300 affiliates have brought knowledge and hope and comfort to thousands of parents whose children are cerebral palsied and to the cerebral palsied, themselves. A variety of services have been provided by the affiliates directly, or in cooperation with other agencies. Increased public knowledge has been accompanied with increased public understanding and a deepened sense of responsibility for the welfare of the handicapped has been developed in citizens in all walks of life. The second milestone approaches. It encompasses service in greater depth, services to those for whom planning and implementation may be more difficult but who, none the less, are entitled to the concerned attention of their fellows. The problem relates not only to the cerebral palsied but to all persons with severe and multiple handicaps. To implement the IHF Plan, UCPA established a number of Task Forces. One of these, the Task Force on Teenagers and Adults, is applying itself to a study of the needs of the multihandicapped and ways to meet them. As an important initial step the Conference reported in this paper was called. Participants came from twenty-four cities and towns in fifteen different states. They represented 42 different agencies and educational centers and their combined experiences covered every known facet of services to the multihandicapped and severely disabled. Professor Theodore F. Childs, Director of Disabled Students Program, The Brooklyn Center, Long Island University, chaired the Conference. Position papers were prepared by Dr. Alfred H. Katz, Professor, School of Public Health, University of California at Los Angeles; Dr. Caibre McCann, Director, Department of Physical Medicine and Rehabilitation, Rhode Island Hospital; Dr. Eugene McDonald, Research Professor in Speech Pathology, and his son, Thomas McDonald, both of Pennsylvania State University; and Dr. Boyd V. Sheets, Professor and Chairman, Speech Pathology and Audiology, Brooklyn College. Dr. Harold E. Yuker, Director for Research in Higher Education, Hofstra University, reviewed the four position papers at the opening Plenary Session, noting salient points and raising questions for discussion. All papers had been circulated in advance to the conference participants. Points raised by Dr. Yuker were answered by the writers at the next session. Participants then separated into pre-assigned workshops to consider problems related to four areas of need, i.e., Physical Care, Education, Recreation and Social and Emotional Factors, as these are reflected in problems of teenagers and young adults. The entire group reassembled for Plenary Sessions during the Conference but the greater amount of time was assigned to working with the problems presented in the specific area under discussion in each workshop. -2 As the Conference progressed similarities in certain statements became evident, so much so that there evolved a number of basic principles with which the conferees expressed complete agreement. Most outstanding, perhaps, was the almost fervid agreement that the "consumer," that is, the person with the disability who is expected to participate in programs, must be involved in planning such programs, at all levels and as deeply as possible. From the Workshop on Social-Emotional Factors came the statement, "There is general recognition now that planning for the welfare of the handicapped has, in the past, been "planning for" and not "planning with." The consumer has been insufficiently consulted. The Handicapped are, themselves, realizing that they should have a voice in the things that affect them so deeply. There was acceptance of the definition of the term "multihandicapped" submitted by the Workshop on Education as, "The individual who is not generally acceptable in most existing program services due to the degree of one or more components relating to physical, emotional, social and adaptative behavior problems." It was agreed that "work for pay" is not the only satisfactory life style, although our American mores project this thought forcibly through every media. For the multihandicapped, desirable alternatives exist in meaningful, satisfying activities, many of which were proposed by the workshop on Recreation. The need for everyone, regardless of disability, to leave the home for some part of the day was recognized repeatedly. The frustrations and hostilities that can build up in young people whose lives are so restricted that they see no one but members of the family and who follow the same routine day after day were forcibly illustrated. The very real importance of taking program into the home was expressed. The group studying educational problems made the challenging statement in regard to home and community programs that "One should not be established without the other" The importance of communication, and the widespread failures of people and agencies to communicate well, were scored in all reports. From the workshop on Physical Care came expressions of concern that failure in this field, and particularly in inter-disciplinary communication, impeded and often negated the advancement of the client. Inter-personal, inter-disciplinary and inter-agency communication were found lacking. The failure of professionals to communicate with the disabled and his family and lack of communication within the family circle were seen as contributing to the problems of the multihandicapped. Allied to this were repeated proposals for the establishment of central information and referral services, as means of sharing information, eliminating duplication and enriching all kinds of activities. Concern with the need for continuing services was expressed. The Workshop on Physical Care pointed out that, due to restrictive agency or hospital policies, the teenager frequently "has not left the program, but the program has left him." The importance of a central agency with responsibility for "following along" during the lifetime of the handicapped person, was repeatedly mentioned. "Half-way Services" to help the handicapped break away from too much dependence on parents and the immediate family were proposed by each workshop. The importance of eliminating architectural barriers and of solving the bogey of transportation were problems well known to all persons concerned with this population. - 3 An interesting new thought was the concept of "Handicapped Power" and its expansion, in some states, through organized Committees for the Rights of the Disabled." These groups work actively toward insuring to the handicapped all the benefits to which they are entitled. The importance of educating the handicapped individual and his family to his legal rights and to the possibility of obtaining action through joint effort fits into the contemporary picture of action in our country. The markedly increased potential for strengthening and enriching current activities, innovating new programs and developing legislative effectiveness through well organized joint action by concerned agencies was emphasized repeatedly. The material for this report was drawn from the position papers already mentioned and the reports submitted by each workshop. UCPA is indebted to all who participated and, in particular, to Social and Rehabilitative Services, whose recognition of the importance of the subject and consequent funding made the conference possible. |