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To my mind that is the only way to make the products of individual advocacy help groups as well.

There are a number of other recommendations within the Institute of Medicine report that will be handed in again as part of this testimony, but I want, before my time does elapse, to talk a bit about some potential, some very, very enchanting possibilities of expanding the ombudsman program to community and in-home services.

They are enchanting, but they're double edged, because potentially we look at the opportunity to be giving services in hospitals, clinics, day care centers, whatnot. In fact, in the history of our organization, at the Alliance, we were up until a year ago, the Nursing Home Residents' Advocates, a case work organization, and the Nursing Home Residents' Advisory Council, a membership organization. As we have planned for our own future, we became an "alliance for health care consumers," positioned, but not funded to expand.

We have taken that very seriously in our own long range planning. We said, "let us be ready, but let us not promise to do what we're not quite ready to do yet."

We understand the concern posed by the proponents of expanding the ombudsman that there are individuals in home and community settings who are at risk and the quality assurance system for them is hardly finished, so why don't we gear up the ombudsman program and help them?

Well, yes, but there is also the concern that if we should do that without adequate program development, without the talent and the money that it needs to do it, those home care consumers are still going to be at risk and the quality assurance services for them is still not going to be quite adequate and people will have been misled about the kinds of direct personal individual services they can get. Furthermore, the nursing home clients, whom we're having trouble serving with our four case workers, will be losing ground.

The nursing ombudsman program may be compromised to some extent, even devastated. What I'm asking you in simple English is; please don't love us to death. We can't manage that.

In 1984, when the ombudsman program was increased to cover board and care residents and facilities as well, the number was small enough in the Twin Cities area of St. Paul and Minneapolis that it didn't make much of a difference. It was a negligible addition. But in many other parts of the country, it made for doubled and even tripled case work responsibility.

I think we need to look at the information about how that added case work responsibility affected those programs. It will teach us a lot about expansion into new areas, about liability issues, about travel time, about responsibility.

The development of a home care ombudsman program can be accomplished. I urge that it be accomplished with caution. Let's look at the resources. Let's look at the results in those counties or jurisdictions where that service is being rendered now. I would pay particular attention to understanding how the skills and protections and other information that's necessary to provide care in individuals' homes as compared with licensed and certified facilities be

something that you look at with great caution. Fund and monitor demonstration programs-give it a try. Plan for the coordination of each of these added segments and aim for effectiveness. There's nothing wrong, in fact there's everything right, with building in an expectation of program performance and achievement right from the beginning. It helps to promote a sound public image of the pro

gram.

To close, one of the gifts that our clients give back to us is perspective and some history and a little shake of the finger and a lot of consolation. They say, "no, we're not going to be able to accomplish it all at once," and sometimes that's hard for caseworkers to swallow. But we can't accomplish all our aims at once. They're right.

And that being the case, what we're really asking of the Congress and of the Administration on Aging as the program develops and grows is to give us a sense of mission. We're out there doing hard work. Give us some vision, especially when it gets very frustrating. The work is certain to become more and more frustrating over the next 10 years.

Give us a sequence of action. We don't have any problem with making promises as long as they're practical promises and what we need most of all is a very fair fit between our responsibilities and the resources.

Thank you, very much.

Mr. BIAGGI. Be assured we won't love you to death.
Dr. Roberts.

STATEMENT OF RUTH ROBERTS, DIRECTOR, JOSEPH KENNEDY, JR. FOUNDATION, PROJECT COMMUNITY ACCESS FOR ELDERLY MENTALLY RETARDED PERSONS AT THE UNIVERSITY OF AKRON, AKRON, OH

Dr. ROBERTS. Thank you, Mr. Chairman, Members for this opportunity to speak to you.

I'm Ruth Roberts, Director of the Joseph Kennedy, Jr. Foundation Project Community Access for Elderly Mentally Retarded Persons at the University of Akron in Akron, OH.

I am pleased to be here to discuss the needs of an underserved population, older individuals who are mentally retarded and how those needs might be met by changes in the Older Americans Act. In the first 60 to 70 years of this century, most parents with a mentally retarded child had only two choices, send their child to a State institution, usually isolated from family and community, the Willow Brooks and the Apple Creeks of this country, or keep their child at home where virtually no public services were available.

Often the child's life was equally isolated. Those remaining at home often remained totally unkown to the service system subsequently developed.

Due to parental action in the 1950's and 1960's, class action lawsuits in the 60s and 70s, as well as substantial State and Federal legislation, large numbers of retarded individuals were discharged from institutions to return to their families, to community settings or inappropriately, to move into nursing homes.

The Nation is now confronted with several groups of elderly groups who are retarded.

The first of those have lived at home with their parents all their lives, often with limited or absent educational services and without other needed social services.

The second of those, who were in State schools and subsequently deinstitutionalized.

Third, a younger group involved in mainstream school systems and work programs for much of their lives and who now in mid life will be among our elderly before the 21st century.

Getting an accurate count of these individuals is very difficult. The problem was, when parents first presented their children to school and they were told that their children were not eligible for public school programs, this is back before 1976, they were so traumatized that they never again sought public services.

So nationally, it's estimated that from 1% to 3% of the population are mentally retarded. Based on this estimate, a range of from 200,000 to 500,000 individuals 60 and above will be developmentally disabled. The majority of those have mental retardation.

To look at it another way and to emphasize how many of these individuals may be unknown to us, data collected in Stark and Summit Counties where the Kennedy Access Project operates proves my point.

In Stark County, with an over 60 population of 60 000; it is estimated that as many as 900 individuals may be elderly and retarded, yet there are only 65 such individuals in the programs of the County Board.

In Summit County with an over 60 population of 84,000, as many as 1200 individuals may be elderly and retarded, but only 140 are in County Board programs.

Then as these individuals become older and their caretakers have more difficulty taking care of them or pass on, that's when they first come to public notice.

Another study of 97 mentally retarded, developmentally disabled persons over 60 in Northeast Ohio shows three-fourths of them to be moderately to mildly retarded, that is, those who need some supervision in daily activities to needing very little.

Generally these individuals can communicate, are free of maladaptive behavior and have physical health status comparable to individuals of the same age in the general population. Their academic and social skills are limited and in general, they do not use community services available to older adults.

In the population studied, about three-fourths live in group homes or nursing homes and the remainder are with their families or in independent housing.

The essence of the Kennedy Access Project is to include elderly mentally retarded people in the mainstream of services for all aging individuals. We respect their right to retire, to enjoy more leisure options and to spend their later years with a senee of dignity and accomplishment.

In the Access Project, we have matched elderly individuals without handicaps with elderly individuals who re retarded. The non handicapped individuals assist their friends in many ways. These

include participating in community activities such as nutrition centers and senior center programs.

And one result of this close personal involvement with their friends is an increase in the retarded individual's communication social skills and self esteem.

Some activities of the Access Program have been carried out using agencys sponsored by area officers on aging throughout the Older Americans Act.

In cooperation with local area agencies on aging, funds from Title IV were used to support cross disciplinary training for state aging and developmental disabilities staff. Some senior citizens who work in the programs are volunteers from church and synagogue groups and retired senior volunteer programs, that's the RSVP.

Others are hired using funds from Title V of the Older Americans Act to work with our older retarded citizens.

Attached to my testimony is statistical information about our clients in this project; but let me provide you with some examples of our human impact.

We have seen persons with mental retardation change from passive' unemotional individuals to active involved ones. One woman who disliked going anywhere where she had to talk to strangers, now accompanies a volunteer to deliver meals-on-wheels and engages in conversation that enriches the visit for everyone.

This woman is now making a substantial contribution back to society. Another of our clients is welcomed into a singing group that provides entertainment in nursing homes. Another person is a member of an oral history group.

Another woman who we were told had absolutely flat affect because she had had three labotomies in the course of her institutionalization, eventually, through the activities of her volunteer companion, was able to address a State conference on mental retardation.

Based on our experience in Akron and the experiences of my colleagues around the country, I believe that minor alterations in the Older Americans Act will improve services to individuals who are old and retarded and will benefit all older Americans. I am not suggesting major shifts of funds be made from current Older Americans Act programs to programs for the mentally retarded.

It is important to recognize that older mentally retarded individuals are eligible for medicaid and receive supplemental security income. When they go to nutrition centers, they pay their own way and when they are in day care centers, they're paid for by county board of mental retardation through purchase of service agreements.

We're looking to the Older Americans Act to supplement these services and contribute to the normalization and enrichment of the lives of older persons who are mentally retarded.

Allow me, please, to make some general suggestions for changes in the Older Americans Act. Recommendations for specific changes in the legislation itself are in my written testimony.

I'd like to suggest that, one, State Commissioners on Aging be required to consider the needs of individuals with mental retardation and other developmental disabilities in developing each State plan on aging.

Two, it be required that appropriate national and local organizations representing persons with lifelong disabilities including mental retardation be consulted in the development of State plans on aging.

Three, it be required that written cooperative agreements are developed between State aging and mental retardation developmental disabilities agencies. This recommendation is supported by the Ohio Developmental Disabilities Council which has pioneered efforts to provide services to older individuals with mental retardation and developmental disabilities. They also include the Department of Human Services in their plans for these written agreements.

Appropriate cross-training needs to be provided for persons in the aging and MRDD service networks and that mental retardation and developmental disabilities be recognized as an area for research and training for gerontology professionals.

Five, group homes and nursing homes, where group homes are unavailable and result in individuals of mental retardation living there, be recognized as the home of persons with mental retardation so that they can receive services under the Older Americans Act.

In summary, I am talking about serving a small but significant group of individuals. I am talking about increasing their participation in programs developed for all Americans who are aging. What I suggest will not detract from services to individuals who are not retarded.

Most of these suggestions are no cost or low cost. I am committed to the belief that inclusion of the persons who is aging and mentally retarded in the mainstream of services for all persons who are aging is a natural extension of the normalization process now extended to school and working aged individuals who are retarded. This is something that we should do for this long invisible and neglected population.

Thank you.

Mr. BIAGGI. Mr. Guy.

STATEMENT OF MIKE GUY, EXECUTIVE DIRECTOR OF AREA AGENCY ON AGING, RURAL SOUTHWESTERN VIRGINIA

Mr. Guy. Thank you, Mr. Chairman, members of the Select Committee.

I'm Mike Guy and I am Executive Director of an Area Agency on Aging in rural southwestern Virginia.

I'm here today to share some concerns from the rural perspective or the reauthorization of the Older Americans Act.

The Older Americans Act is an excellent document which is doing much to improve the quality of life for many of the rural elderly of this nation. Unquestionably, programs funded under this act are helping millions of older Americans live out their lives with the fullest measure of dignity and independence.

In reviewing the Act, I have found ten specific references to the needs of the rural elderly.

Some of the reasons that it costs more to provide services in rural areas include the lack of competitive service providers, the

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