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Thus, human management service in mental retardation must be predicated on the availability to the parent of the same array of diagnostic and informational, therapeutic and supportive services that a forward-looking community must make available to all its infants and young children. The fact that the mentally retarded child may need more of these services and need them in greater intensity than the average child should not mean that parent and child are segregated into a special service from the time of the child's birth.

For the mentally retarded child, next in importance to maintenance of life is maintenance of his place within the family, even when clinical, educational, social, or rehabilitative factors may require his physical absence from the home on a short-term or a long-term basis. An important implication of this for human management is that the parent should participate to the greatest possible extent in significant decision-making in all stages of programming. And it needs to be emphasized that this should extend even to significant decisions made in and by an institution where the child may be a long-term resident.

Participation of parents in the decision-making process relative to human management services on behalf of their child should be paralleled by a continuing effort to maintain and strengthen the ties between the child and the family during periods when removal from the home is necessary. Even though it may appear trite and redundant to state once again that services away from home should, with very rare exceptions, supplement rather than supplant the role of the family, there is a real need to emphasize that the parent should have access at all times to his child, and every effort must be made (including subsidy where this is necessary) to have the child visit back in the home during periods of residential care. Frequent, sometimes prolonged, visits have proven their value in preventing undue prolongation of residential care.

At present, there is widespread belief that the current ratio of about 1.0 residential place per 1,000 persons in the population is inadequate, and the length of institutional waiting lists are frequently cited as evidence. Also, it is widely believed that the need for residential places is related to the desire of many parents to sever themselves permanently and completely from their severely and profoundly retarded children. However, there is good reason to believe that to a significant degree the present demand for placement is increased by four extraneous factors:

1. The inadequate or even misleading counseling given to parents at the time they first become aware that they have a severely handicapped child.

2. Prevailing negative community attitudes toward severe disablement.

3. The severe degree of frustration within the family engendered by a lack of community service, including appropriate medical services, which would diminish the family's burden.

4. The deplorable conditions of institutions, and especially the offensive and literally sickening state of the wards for severely disabled young children, which produce in the family on the one hand revulsion and, on the other, feelings of guilt; both reactions quite naturally contribute toward increasing separation from or abandonment of the child.

Thus, despite the overwhelming evidence that has been publicized over the past 10 or more years, it is still unfortunately necessary to emphasize that the stated need for residential services for the mentally retarded must be related to the absence of basic human management services in infancy and early childhood. While some people may feel inclined to dispute this statement, its justification is easily demonstrated by a realistic and objective yardstick: money appropriated for this purpose from local, state, or federal public funds. The facts in this regard have been stated over and over in this report: money is available to the tune of hundreds of millions of dollars for construction or renovation of institutions, but is most scarce and in many areas of the country totally nonexistent for the development of such supportive services for the family as home consultation and guidance from public health nurses, nutritionists, physical therapists, and child development workers; homemaker services, babysitters, day care or occasional night care; and short-term residential care where there is need for crisis intervention or planned relief for the family.

A plan which was recently approved in principle and supported with an appropriation by the Douglas County (Omaha, Nebraska) County Commissioners specifically proposes the establishment of a Crisis Assistance Unit (CAU), with 12 beds for short-term residential care during family crises. The CAU would also provide less than full-day residential care both for crisis and stress relief, and thus give parents the reassuring knowledge that there was a "back-stop" service to aid them as need would arise (Greater Omaha Association for Retarded Children, 1968a, 1968b).