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Yet there has been and still remains in some quarters considerable uneasiness about an involvement of parents of the mentally retarded in the development and administration of services and in planning for change. Administrators are far more ready to extend to them their sympathy, guidance, and concrete assistance than to acknowledge them as active participants in the process of social programming. On occasions when representation of citizen interest on civic bodies, committees, and study commissions is involved, the opinion is likely to be voiced that representation from the parent association is not desirable, since they are too close to the problem. Yet when it comes to discussion of agricultural problems, farmers are not content with having leading citizens represent them, and physicians will not even recognize committees dealing with health matters on which they are not prominently represented. One often hears the stereotyped objection that parents and parent groups are interested only in immediate solutions and lack or are unwilling to apply long-range viewpoints. Yet the same can be said of administrators of public programs, and in recent years parent associations have repeatedly objected to the expediency of make-shift relief measures and insisted on adequately thought-out, long-range programming. (5)

Unfortunately NARC has lost much of its original forcefulness, and particularly in the area of residential care it has not been aggressive enough in informing the general public, legislative bodies, and key professional organizations of the disgraceful situations in our state institutions, involving gross violation of state law and state standards, gross lack of the most essential pieces of clothing and bedding, gross violation of residents' civil rights, and instances of cruel and inhuman punishment, unjustified use of restraints, and prolonged detention. Of all these matters no one has a more penetrating knowledge than NARC's membership, but not enough has been done to use this knowledge strategically for the ultimate benefit of the institutionalized mentally retarded children and adults, who are so desperately in need of a forceful advocate.

Volunteer and Citizen Contribution. A vital factor on the American social scene is the volunteer, and in this particular context, the volunteer who as an interested citizen activist gives freely of his time to participate vigorously in organizing, guiding, and critically reviewing and appraising human welfare services in his community, his state, and his country. As an independent citizen without vested interests in the subject matter, he is often an ideal person to call to public attention disturbing developments which require change, such as the existence of dehumanizing, unworthy, or inadequate services to other human beings. To the degree that it requires controversy to accomplish this, he can and should create such controversy. To the degree that sustained publicity is required to elicit public concurrence, he is in a position to develop it. In the role of ombudsman, adopted from the Scandinavian model, he can introduce a new pattern of safeguarding the rights of the mentally retarded, of their parents, and also of those who work with the retarded. Citizen volunteers can perform an invaluable service by gaining the support of individuals or groups in the community who for various reasons are opposed to the initiation and maintenance of services and facilities on behalf of the mentally retarded. Without the help of volunteers, change may be long delayed; with their active participation, change nay be considerably accelerated.

It is of vital importance that there be always consumer groups and citizen activists who retain their freedom to criticize the established agencies and policies. Thus, such consumers and activists should be careful not to be maneuvered into situations of financial or other dependency upon the agencies they should survey. However, agencies such as institutions, state departments concerned with institutions, and other service systems could increase their orientation to change by employing some intelligent, alert consumers as well as attorneys as staff members in order to actively seek out ways of safeguarding the rights and welfare of the clients, investigate complaints, and communicate with citizen and consumer groups.

If, in this fashion, citizen volunteers, consumer groups, professional organizations, and government collaborate as equal partners on the local, state, and national level, they will constitute a powerful force for change and for accomplishing a vital social task.

Needed Crash Programs. In a consideration of the entire problem of change, and of the most feasible and appropriate ways of bringing change about, there is one painful aspect that has to be faced. This is that conditions in some institutions are so bad that sudden revolutionary, rather than slow evolutionary changes are needed. When a natural disaster occurs, citizens and government will respond with a crash program. Some of our institutions are disaster areas, and require emergency measures for change.