AVAILABILITY OF SERVICES-Continued STATE FACILITIES FOR THE MENTALLY RETARDED-Continued State (capacity of facilities) Idaho (725).... None. Illinois (13,000).. 2,227 Indiana (3,850). 1,478. lowa (2,000). Kansas (700).. Kentucky (1,100).. Applicants awaiting admission No waiting lists maintained. Duration of wait Temporary care program has eliminated waiting list. 2 to 6 years. Wait depends on type of case. Emergencies are admitted immediately; less emergent cases have been on the waiting list as long as 5 years, and sometimes longer. Admissions may be deferred after preadmission evaluation. 128, includes 46 boys from ages 2 to 21, 24 months, approximately for boys, and and 32 girls from ages 2 to 21. 250 as of April 30, 1966.... 18 months, approximately, for girls. Varies from several days to 2 or 3 years according to mental and physical handicaps. Several days to 1 month for ambulatory cases; several years for profound "crib cases." Not presently available. Variable wait, depending on need. For 156, includes approximately 100 severely 1 week to 2 to 3 years. 671, includes 463 profoundly retarded and For the age group 0 to 7 (nursery) the pro208 severely retarded. 942 as of Mar. 31, 1966. This includes 91 Varies from 3 weeks up to 2 years, depend- 85 to 90, includes approximately 50 pro- 150. 3,641 as of Feb. 28, 1966. Includes an esti- No waiting lists maintained. See footnotes at end of table. 2 years for severe, nonambulatory. 3 to 6 months for moderately retarded and no wait for mildly retarded. 1 to 2 years, approximately. This is expected to be reduced somewhat in about 2 years. 2 to 5 years for nonambulatory. 1 to 2 years for ambulatory severely and profoundly retarded. Wait varies considerably with the age and specific problems of the individual retarded, as State is able to accommodate some groups much more readily than others. The longest anyone has been on the active waiting list is approximately 21⁄2 years. 4.8 years for profoundly retarded; 2.8 years "Duration of 'wait' is very long." AVAILABILITY OF SERVICES-Continued STATE FACILITIES FOR THE MENTALLY RETARDED-Continued State (capacity of facilities) Applicants awaiting admission Duration of wait Approximately 3 years for nonambulatory profoundly and severely retarded; 1 to 2 years for trainable moderately or severely retarded; no wait to 6 months for educable retarded. (Exceptions to the waiting list are made for emergency cases of retarded dependents of military.) Average is approximately 2 years, but varies according to sex, age, level of intellectual functioning and other factors. "If a person were added to the waiting list today, he might be admitted tomorrow or he might have to wait for more than 2 years." 2,000, includes 700 critical and 1,300 non- 2 years for critical. critical. 1,200 300 to 350. 57.. 228 on active list as of April 30, 1966....... 1,261 as of April 30, 1966. 117. 238 as of March 31, 1966. This includes 2 Depends on type. Generally 18 months. 2 to 3 years. 1 year for ages 2 to 6; 6 months for ages 6 to 21; 1 year for those over age 21. 3 to 6 months for urgent cases. Longer for less urgent cases. Waiting time estimated to be about 2 years, An average wait of 3 years in most categories. the degree and nature of the handicap. Connecticut.-Prerequisites for the urgent waiting list include willingness of the family to accept placement immediately when offered and the presence of detrimental effects on the family caused by continued maintenance of the retarded member at home. A sizable number of families have indicated an interest in residential care at some future and not-to-be defined date, but these are not shown on the present urgent waiting list. 2 Minnesota.-There is careful evaluation to determine whether the problem presented is primarily one of mental retardation of whether it is one of social maladaptation with mental retardation as an associated symptom. Treatment and training plans would utilize a variety of resources appropriate to the needs of the individual such as more intensive family treatment, use of homemaker services, foster care, private residential care, or a State residential facility. Rhode Island.-All referrals for service or admission are processed by virtue of applications being completed, summaries collected, medical and psychological testing administered. At this point a diagnostic conference is held and admission or community sustaining services is recommended. If admission is denied, Social Service staff are asked to try and sustain the patient in the community by use of whatever service may be available. Periodic review is made when indicated of cases on Community Sustaining Services and new factors are considered and a decision made to admit or not admit. As to numbers, there are currently 110 active referrals on file. Fifty of these have been processed and denied admission. The remaining sixty are either in process, or retardates located in other state facilities, such as Child Welfare Services' Foster Homes, State Institute of Mental Health and Zambarano Hospital. Approximate numbers: Child Welfare Services. Institute of Mental Health. Own home.. Foster Homes 4 16 20 20 The foregoing, Mr. Chairman, is by way of illustrating to you the magnitude of the problem—and of emphasizing why we are here today asking for further assistance from the federal government in developing programs to help meet the staggering national needs in the treatment of the mentally retarded. The NASMHPD supports the various proposals now before your committee to extend and expand the federal matching programs providing aid in the treatment of mental retardation. CONTINUING FEDERAL SUPPORT FOR A BROAD RANGE OF SERVICES We would like, however, to comment on the need for continuing federal support for a broad range of services. First, the need for federal support for a broad range of services. Significant costs other than personnel are essential to providing high quality care for retarded persons. Transportation, for example, may represent 25% of the cost of operating an effective day care program for the mentally retarded. Consumable supplies, food, and building maintenance must also be paid for if the facility is to run an effective program. While it may be possible for the facility to pay the salary of a bus driver which it employs out of the funds reserved for technical personnel, it may also be more economical and efficient to contract with a bus company for these services. This option should be available to the program administrators. And at this point, Mr. Chairman, I offer for inclusion in the record a newsstory which graphically demonstrates how this problem has adversely affected the operation of a mental retardation program on Staten Island. "[From the Staten Island Advance, July 23] "LACK OF BUSES HURTS CLASSES FOR RETARDED "A federally-funded project aimed at providing summer instruction for men tally retarded children is operating with half-filled classes at PS 16, Tompkinsville. "The low enrollment is blamed partially on the lack of bus service. "The children, who are educable and trainable retardates, receive free passes to ride public transportation but it's felt parents are skeptical of the smaller ones commuting by themselves. "No money was allocated in this program for bus pick-ups although such service is provided during the school year. "The children come from all over the Island. "The teachers, Mrs. Alma Prosperi and Mrs. Lila Abrams, feel the rolls would increase if door-to-school transportation were made available. "Mrs. Prospori said the program's emphasis is on academics. Arts and crafts are included, she added, for recreation and learning purposes. "As she spoke, children were painting with water colors, cutting flowers out of paper or working on leathercraft items-gifts for their parents. "The curriculum covers speech, reading and writing and mathematics. The youngsters range in age from six to the teens. "One young lady, Miss Patricia Pizzuto of 810 Henderson Ave., West Brighton, plans to attend the Richmond Occupational Training Center, New Brighton, in the fall, for vocational training. "Another will continue her studies at Prall JHS, West Brighton. "Classes meet from 9 to 12 weekday mornings for six weeks ending Aug. 15. Interested parents may contact the teachers at PS 16, Tompkinsville." Thus, we strongly concur in the recommendation by the National Association for Retarded Children that the most essential and significant of "other costs"— especially transportation-be includable for federal sharing at the discretion of the Secretary. Continuing Federal Support Second. The need for continuing federal support. A sharply declining matching formula will not work in facilities for the mentally retarded because third party payments from Blue Cross-Blue Shield and the like are not available to fill the gap as they are in the programs for the mentally ill. The variety of kinds of services needed and the duration of individual need in the case of the care and training of the mentally retarded require a federal matching system different than that provided for other federal matching programs. Thus, we strongly concur in the recommendation by NARC that a program for continuing federal support to facilities for the mentally retarded be provided in the proposed legislation. In summary, Mr. Chairman. we consider it vital that this program, with all its present features, be continued and that it be expanded as we have suggested. We urge you to accept the appropriation authorized by the House, although you should recognize, as I am sure you do, that the funding level falls far short of meeting the need. We also urge you to accept the House language with regard to the university-affiliated programs and to accept its proposal regarding education of the handicapped. But most of all we urge you to make provision for continuing federal support for a broad range of services to the mentally retarded. Thank you, Mr. Chairman. We appreciate having had this opportunity to testify before your committee. Mr. MORRIS. I would just like to point out that the association concurs in the recommendations of the National Association of Retarded Children. Senator, I would point out that there are two points that are particularly important. The first is the need for support of a broad range of services, particularly transportation, that Mrs. Boggs referred to, and the second is the need for continuing Federal support; since the other funds do not flow into this program the way they do into other programs, the need for continuing Federal support is particularly important. Thank you. The CHAIRMAN. Anything you would like to add? Mr. GETTINGS. No, sir. The CHAIRMAN. We want to thank you all very much. You always bring in good testimony. Mrs. BOGGS. We appreciate your interest and attention and understanding. The CHAIRMAN. Thank you very much. Dr. John J. Noone, executive director of the American Association on Mental Deficiency. Doctor, good to have you back with us. You may proceed. STATEMENT OF DR. JOHN J. NOONE, EXECUTIVE DIRECTOR, AMERICAN ASSOCIATION ON MENTAL DEFICIENCY Dr. NOONE. In the interest of time, Mr. Chairman and the committee, my observations will be very brief. I wish to commend my colleagues, Dr. Barnett and Mrs. Boggs, for their excellent statements, and we certainly are in support of their comments. I represent the American Association on Mental Deficiency. The American Association on Mental Deficiency wholeheartedly supports H.R. 6430. The extension of title I, part B, of the Mental Retardation Facility and Community Mental Retardation Construction Act of 1963-Public Law 88-164-through fiscal year 1970 will permit the construction of 20 additional university-affiliated facilities for the mentally retarded. These facilities will provide specialized training for 2,000 professional personnel, and care and treatment to 2,000 retarded not now receiving adequate services. Although the American Association on Mental Deficiency supports this provision, we recognize that it must be regarded as minimal in terms of the total need for 200 university-affiliated facilities. State plans for the construction of community facilities for the mentally retarded indicate that approximately 1,500,000 retarded are in need of services not now available, that is, diagnosis, treatment, education, training, custodial care, and sheltered workshops. An initial start in the construction of specially designed facilities to house the services vitally needed by the retarded has been provided by Federal grants to States under title I, part C of the Mental Retardation Facility and Community Mental Retardation Construction Act of 1963-Public Law 88-164. To date, over 160 projects serving a total of some 45,000 retarded individuals, of which 23,500 were not previously served, have been approved for Federal aid amounting to $32,400,000. This is only a beginning; much remains to be done. The extension of title I, part C through fiscal year 1970 will permit the construction of community facilities which will provide services for 70,000 additional retarded individuals. Even so, the American Association on Mental Deficiency feels that the proposed authoriza tions are minimal in terms of the total need for facilities for the retarded. The AAMD also vigorously supports section D. Section D will be an essential catalyst for the development of new community facilities by providing vital support of professional and technical staff in the | first critical years of service. Equally important, it will permit established facilities to initiate new services for the retarded. Here again, the AAMD believes that the authorization of fiscal year 1968 through 1970 are minimal. The AAMD supports the amendment to section 134(7) providing for the enforcement of the standards of maintenance and operation adopted by the State effective July 1, 1969. Adequate standards of maintenance and operation are essential to the development of effective programs. Enforcement of these standards coupled with assistance for construction and staffing will do much to enhance the quality of care and treatment for the retarded. The AAMD supports the amendment to section 134(7) providing for the enforcement of the standards of maintenance and operation adopted by the State effective July 1, 1969. Adequate standards of maintenance and operation are essential to the development of effective programs. Enforcement of these standards coupled with assistance for construction and staffing will do much to enhance the quality of care and treatement for the retarded. Thank you very much. The CHAIRMAN. How about the training of teachers? Dr. NOONE. We certainly approve of that. The CHAIRMAN. Wholeheartedly? Dr. NOONE. Yes, sir. The CHAIRMAN. Any questions? Senator MURPHY. No, sir. The CHAIRMAN. We appreciate the presentation of your statement very, very much. Dr. Robert E. Cooke, professor, department of pediatrics and pediatrician in chief, Johns Hopkins Hospital. Glad to have you back with us, Doctor. STATEMENT OF DR. ROBERT E. COOKE, PROFESSOR OF PEDIATRICS AND PEDIATRICIAN IN CHIEF OF THE JOHNS HOPKINS HOSPITAL, MEMBER OF THE PRESIDENT'S COMMITTEE ON MENTAL RETARDATION, AND CHAIRMAN OF THE SCIENTIFIC BOARD OF THE JOSEPH P. KENNEDY, JR., FOUNDATION Dr. COOKE. Mr. Chairman and members of the Subcommittee on Health, I am Dr. Robert E. Cooke, professor of pediatrics and pediatrician in chief of the Johns Hopkins Hospital, a member of the President's Committee on Mental Retardation, and chairman of the Scientific Advisory Board of the Joseph P. Kennedy Jr. Foundation. I have been concerned professionally and personally for over 20 years with teaching and research in mental retardation and care of the mentally retarded. |