What, then, should these centers be? They must be administered in a way that permits them to interrelate as much as possible with the community developmental disability facilities. They must be consultation centers for the satellite groups in the community which will carry out a large part of the service programs for the handicapped.

They must be community training centers which train personnel for the satellite units and provide subsequent inservice training. They must be community research centers that can develop the essentials of better treatment and pass on this information to community programs for immediate application.

From a cost-benefit standpoint, there is impressive evidence of what can be accomplished for the handicapped through these universityaffiliated facilities. Yet, for those members of our society who are skeptical of the value of any efforts made for the handicapped, it is appropriate to point out what may be accomplished in terms of real benefit for the normal child.

Historically, medicine has learned a great deal of what is important for the normal from the study of disease. For example, the study of diabetes has contributed a great deal of information concerning normal carbohydrate metabolism. The study of cretinism, a bizarre form of retardation studied many years ago in Switzerland, demonstrated the role of the thyroid gland in normal people.

The study of inborn errors of metabolism has provided information on the normal chemical pathways of the body. The study of Mongolism, or Down's Syndrome, I believe, will contribute very significantly to our understanding of the aging process. Likewise, in the study of learning problems of the handicapped, much information can be obtained which will be valuable in understanding the normal child.

For example, an appreciation of the existence of individual variation in learning abilities is absolutely critical to the most effective use of our educational resources. Individual variation is a concept which has not been fully appreciated by education and which comes from the study of individuals with disability.

Conservative estimates of so-called normal schoolchildren with unusual profiles of intellectual capabilities vary from 15 to 25 percent. Optimal education of these normal children requires individual teaching methods the development of what might be called prescription teaching-to exploit the child's areas of strength and to attempt to bring his areas of weakness up to a normal level.

It is essential that adequate scientific epidemiologic approaches in the description of learning disabilities be developed so that communities can plan and experiment with different types of resource allocations which ensure that our educational dollar buys a maximum education for all pupils over the spectrum of abilities ranging from the mentally handicapped to the child who is quite intelligent but has only specific learning disabilities.

Another example is in the area of psychiatry. The study of the basis for the strength of a family facing severe adversity can lead to improved ways of assisting the normal family to be prepared for hardship. Likewise, in the area of behavior modification, the use of conditioning procedures to remove unacceptable behavior has obvious. application for normal child-rearing practices in determining the importance of rewards.

I should like to make sure that, within the legislative history of this bill, there is proper concern for the financial support of these centers. The construction funds should be allocated in a way that will permit optimal support of community resources. This will entail a careful programing to ensure that there is adequate geographical distribution of the university-affiliated facilities.

Facilities must be built in locations and at university centers which will provide maximum support for regional or State community programs. In addition, the funds which are authorized for support are absolutely minimal and are a long way from being optimal.

I believe that the support of these facilities must be in four categories. First, sustained dollar support over a period of 5 to 10 years for direct cost and administration. This would provide for core activities to insure that there is continuity of staff from year to year which can lead to progressive improvement in programs.

Second, there should be dollar support for specific programs which comes from established agencies awarding funds in competition with other training, demonstration, and research activities. It is extremely important to assure that these centers are not excluded from such support programs because of the core support to which I referred.

Third, support of indirect costs must be adequate to insure universities and their affiliated facilities are not depleted of resources in the process of maintaining the high cost of the programs I have indicated.

Fourth, there must be money for development so that emphasis can be placed on new methods of operation. I believe these funds should come from the efforts of the university-affiliated centers themselves through the recovery of monies for services performed, and should be used only for professional research and teaching just as universities use new funds to develop new programs. Such a mechanism will provide incentive for the acquisition of appropriate funds for services rendered.

These four support efforts must be for all elements of the center, not just the biomedical, or the educational, so that maximum balance can be obtained and maximum flexibility in the use of funds can be made possible. At the present time, there is a very serious imbalance which compromises the interdisciplinary approach.

Either the biomedical support in some facilities is grossly underdeveloped and undersupported, or the educational support is seriously compromised, as is the situation in most of the facilities. Indeed, what has developed is competition instead of cooperation in acquiring funds for the major areas of the program and this competition has seriously limited development.

Methods must be found to reward joint activities so that divisions with educational responsibility and divisions with biomedical responsibility can be encouraged to work together. Likewise, centers with major emphasis on one or the other can also be encouraged to cooperate. In conclusion then, I feel this legislation has great merit. Is seems that the only way community programs, which are demanded by society, can be effectively implemented and improved on a year-to-year basis is through the parallel development of the university-affiliated

facilities.

As a way of illustrating the particular accomplishments in a somewhat graphic manner, I have asked some of the staff of the Kennedy

Institute to accompany me to present, very briefly, a few case examples of the kind of service programs upon which the framework of training and research are built.

Accompanying me is Dr. Arnold Capute, who is deputy director of the Kennedy Institute, and he will present these cases. I appreciate the opportunity to appear before the committee and I hope that the legislation will be successfully enacted.

Senator, we have some video tape and some parents have been good enough to bring the children in so that we may have some opportunity to see the contrast between the way these children were before they came to the Kennedy Institute and their present behavior.

STATEMENT OF ARNOLD CAPUTE, M.D., DEPUTY DIRECTOR, JOHN F. KENNEDY INSTITUTE FOR HABILITATION OF THE MENTALLY AND PHYSICALLY HANDICAPPED CHILD, JOHNS HOPKINS UNIVERSITY, BALTIMORE, MD.

Dr. CAPUTE. We have three cases from the John F. Kennedy Institute depicting developmental disabilities. The first to be shown is little Cynthia Evens, a 5-year-old female, first admitted to Kennedy Institute at 311⁄2 years of age. The developmental disability was absence of the sacrum and lower lumbar spine.

Associated with this she had, shriveled legs and when admitted Cynthia walked on her hands which was felt esthetically not acceptable. It was a long drawnout process for the psychiatrist, pediatrician, the physicians of the community, and others who had shared this responsibility, for the care of the child, to have a conference with the family.

When I was in medical school I would have seen this child with one disorder, mainly physical, with a one channel approach, orthopedics. She would have had occupational therapy and physical therapy under the supervision of an orthopedic surgeon.

Today, we know that developmental disorders frequently involve more than one system. When Cynthia was admitted to the Kennedy Institute, the main problem initially was the lower extremities. The decision was that her legs should be amputated and that she be fitted with a bucket-type prosthesis having two artificial lower extremities.

The parents were not convinced of this need. Since many of the disciplines working with Cynthia, were running into a stone wall, we recommended that she see Dr. Aikens in Detroit, who performed several of the original operations (less than eight have been done in this country). We welcomed the Evens family not only to speak to Dr. Aikens, but to see other children who had this operation a year or two previously and to see how they had progressed.

This trip greatly assisted the family in arriving at the decision that the child should be operated.

On admission we also noted that Cynthia lacked the necessary nerve supply to the urinary bladder. For children to attend special education classes in Maryland, they should be dry. The family went along with our recommendation; the urinary diversion procedure was perform and Cynthia now has a urinal bag which she empties periodically unassisted.

While the mother looked upon the lower extremities and urinary bladder as the most important habilitation procedures, the Kennedy staff felt the learning disorder discovered upon admission, was to be the most important aspect of her habilitation. It is this type of learning disability which hopefully through institutions like the universityaffilated centers, with pediatricians working with psychologists and educators, will devise a teaching method to greatly improve this developmental disability by special teaching techniques. This is a bright little girl with a normal IQ however she does have a scattering of mental abilities, which is commonly associated with learning disability. I would like to go on with the pictures if I may. They are most dramatic.

Film commentary: Here she is at the beginning. This is the way she walked around. Born with congenital absence of lower lumbar spine below the level of L-2 and absence of the sacrum. She has very small deformed legs with muscle wasting. She cannot bear any weight on her legs and gets around by walking on her hands in this manner. You see her attempt at walking. She does not bear weight on her legs, although she can move one in front of the other. Neither leg can be straightened more than seen in this picture.

Several years of attempts at therapy have been tried. With braces, crutches, various types of apparatus, but she has still been unable to use her legs to walk. She gets around the house on her hands, gets in and out of the wheelchair herself. At the age of 4 years and 7 months, both legs were amputated just below the hip joint. She was then fitted with a bucket type prosthesis. She carries all her weight now at the top of the bucket, which rests on her chest wall. These legs have freely moving hip joints and freely moving knee joints to allow her to sit in as normal fashion as possible.

When standing and walking the knees and hips are maintained in a straight position through the efforts of the child putting the weight on her feet in the proper manner. She has been trained to do this and has done very well. This is an adult size chair she has just gotten into. She managed to put her crutches on the side where she can easily retrieve them when she is ready to get up.

She is able to completely remove her clothing, get out of her bucket prosthesis and get into bed, which she does daily at home, she completely takes care of dressing and undressing and getting in and out of bed.

There is the urinal bag.

You can now see the top of the bucket prosthesis which she slips into. The prosthesis is held in place with two shoulder straps which she is now removing. Due to lack of bladder control, she has had a procedure for an ileal loop. She now removes the bag which holds the urine from inside her prosthesis. She will now get out of the prosthesis and into bed.

This demonstration was held in one of our three apartments where parents come to observe the disciplines working with the child.

She can then get out of bed and completely dress herself. She is able to manage her own bag, take herself to the bathroom, open and drain the bag and replace it correctly.

Senator KENNEDY. Doctor, I just wish my children could see that.

Dr. COOKE. We hope we can put together a film sometime that will illustrate this for the general public. I think it is really remarkable.

Dr. CAPUTE. Here you have seen a child who initially was managed by occupational therapy, physical therapy, orthopedics and soon after social service, psychiatry and pediatrics were brought into the picture; after the lower extremities were amputated and the bucket prosthesis applied, occupational and physical therapy were once again brought back. She has worked with this prosthesis for the past 22 months and you can see how well she is doing. Now she is almost 6 years of age and approaching the school years. The learning disability will receive guidance by the educator.

Dr. CAPUTE. Did you want to say anything, Mr. and Mrs. Evens? Mrs. EVENS. Not anything particular except how much we appreciate Kennedy and what they have done for us.

Dr. CAPUTE. Any questions at all?

The next case presented is Vicky Linck. A tragedy occurred to Vicky in May of 1968, at which time she was in an auto accident and sustained injury to the brain.

Commentary. July 15, 1968, Vicky is 81⁄2 years old. She was admitted to the Johns Hopkins University on May 10, after an automobile accident.

This was May 1968. At 82 years of age she was in an automobile accident. Vicky came to the Institute 2 months after a severe automobile accident. One of the values of the UAF's is providing a facility where experts can be called in on the initial phase. About a month after the accident, while she suffered from a severe neurological deficit and her condition was stabilizing, the occupational therapist and physical therapist and pediatrician from the Kennedy Institute were asked to treat Vicky, to initiate therapy and to make preparations for her transfer to the Kennedy Institute for further habilitation.

She was neurologically impaired to the point where she had little use of the four extremities. Her handicaps have markedly improved with the invaluable assistance of the occupational and physical therapists.

Accompanying her physical disability was mental impairment. She is now functioning in the high educable range but with some scattering of her mental abilities which indicates a learning disability. After the remedying of the physical disability an educational profile was worked out. She was given 1 to 1 instruction by the educators on an inpatient basis and soon was transferred to the outpatient special education school at the Kennedy Institute. Here you see Vicky jumping rope and here you see demonstrations of 1 to 1 teaching. Subsequently, she was put in a group as noted in the audiovisual taping. As of now her IQ in in the 80 range (dull-normal) and her speech has improved considerably. The habilitation procedures were carried out by the various disciplines. Hearing and Speech worked with Vicky to improve her with her speech and language disabilities.

Senator KENNEDY How do you like school?

VICKY LINCK. It i. all right.

Dr. CAPUTE. The next patient is Johnny Sarsfield, approximately 10 years old, a boy, wo came to the Kennedy Institute at age 7 years, 5 months, with diagnosis ranging from early childhood schizophrenia, 'infantile autism," to profound mental retardation. Johnny was seen by the various disciplines and was felt to be profoundly retarded.