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Show Medical Center Finds Answers to Problems of Handicapped Children By SYDNEY S. GELLIS, M.D. 'What can I do for my babv?" asks the mother of a child with a birth defect. In too manv instances, she asks the question of one person or agency after another, and receives only partial answers from them. The lack of a central source of information about medical educational, recreational and vocational facilities for birth defects children has long been a problem for both parents and physicians. To meet this need, the March of Dimes financed a two-vear pilot project at Boston Bos-ton Floating Hospital for Infants In-fants and Children to gather and disseminate such information. infor-mation. It was established in January, 1968 and funded through the Massachusetts Bay chapter of the voluntary health agency. Today the Center has proven so successful that the Massachusetts Mas-sachusetts Health Department has agreed to assume responsibility respon-sibility for the program. Pinpointing Help Physicians, parents, social agencies, public health officialsanyone of-ficialsanyone concerned with the handicapped child can call or write the Information Center to find out about all public and private programs for handicapped children in Massachusetts. What does a typical mother want to know? Well, Mrs. George Taylor is a good example. ex-ample. (Naturally, this is not her real name.) Mrs. Taylor's two-year-old daughter is afflicted with Down's syndrome (mongolism). (mongol-ism). Her doctor had long ago told her the medical facts about Laurie, although she had never really understood it all. Her question was: "What can I do to help my daughter live her life as fully as she can?" Mrs. Toby Fain, coordinator coordina-tor of the information and referral re-ferral service, took the call. First, she found out what Mrs. Taylor already knew. She promised to send her a reading read-ing list and some printed materials ma-terials concerning the child with Down's syndrome. Then she suggested that Mrs. Taylor think about sending send-ing Laurie to one of the state-supported state-supported day nursery schools for retarded children. She explained ex-plained how to apply. Parents seek information from the Center on a wide range of subjects, from preschool pre-school and recreation programs pro-grams to genetic counseling, speech therapy and rehabilitation rehabili-tation programs. More than half the children inquired about were physically handicapped handi-capped and 18 per cent were mentally retarded. The central index includes complete data on services of all types, including financial assistance programs, and can pinpoint the location of facilities facili-ties nearest the patient's home. During the Information Center's first year of operation, opera-tion, 406 calls were received. The information service works hand-in-hand with the March of Dimes Birth Defects Center for patient services at the Tufts-New England Medical Medi-cal Center. The patient service serv-ice center referred an additional addi-tional 300 children to the information in-formation service. Although more than half of those who contacted the Cen-ter Cen-ter were parents, friqnds and v ' - !' Mrs Toby Fain, coordinator of the March of Dimes Birth Defects Information Center, Boston Floating Hospital for Infants and Chil. dren plots services available to the handicapped on map. relatives, physicians and social so-cial agencies made 30 per cent of the inquiries. To determine if the Center was performing a needed function, func-tion, Mrs. Fain sent a questionnaire ques-tionnaire to all callers at the end of the first year. She learned that: 86 per cent found the information infor-mation received helpful; 72 per cent had previously tried to obtain this information informa-tion elsewhere; 85 per cent used or acted upon the information received; re-ceived; 93 per cent would call the Center again if they needed infoi",!,';'- The Massachusetts Health Department had been watching watch-ing the development of the Information Center since its inception. Convinced that the program was as successful as it was needed, the health officials offi-cials decided last July to assume as-sume responsibility for the program pro-gram effective January 190. Nationwide Service The Boston information and referral service was a "first" for the March of Dimes. Other centers have already been set up at the University of J, bama Medical Center in Bi, ingham and PresbytcrianSi Luke's Hospital in Ch'ica The medical department the March of Dimes lias pr,' pared a set of guidelines fo-the fo-the development of more of these centers by individual chapters. The experience of the Mai sachusetts pilot program clear ly emphasizes the need "in each state for a central infer, mation center which can quickly provide specific info,, mation about all facilities available within the state fo-the fo-the care of handicapped children. chil-dren. Such centers can in addition ad-dition serve to determine deficiencies de-ficiencies in services for children chil-dren and permit planning for future needs. Computer tech. niques should permit rapid in-terchange in-terchange between states on incidence and location ol handicapping disorders. We hope that these pilot projects will point the way to a national information center which will offer a registry of facilities and information lot the entire country to parents of children with birth defects or other bardiins. |