disability, are age-related and these conditions are directly related to the mental health of the person.

Pointing out these relationships, the handbook given to delegates of the 1971 White House Conference on Aging concluded that there were a number of specific gaps in the delivery of mental health services to the elderly. The enumerated problems were: (1) discontinuity and fragmentation of care, (2) inadequacies in residential and outpatient programs, (3) lack of adequate Medicare and Medicaid coverage, and (4) inadequate financial support for mental health programs. An evaluation of the present status of mental health care by our Associations indicates that the conclusions of the 1971 report remain unchanged. Efforts to instill a positive public program to meet mental health needs have failed. Initiatives have been frustrated by budgetary restraints, inadequate planning, competing priorities, administrative and regulatory red tape, and shameful neglect.

Writing recently in Newsweek, Shana Alexander, the noted syndicated columnist, educated her readers to the reality of mental health and the elderly:

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. . . here in what I have called Kids' Country, we worship youth and prefer our old people to remain invisible, out of sight and out of mind. In all of Kids' Country there is not a single university or medical school chair of geriatric medicine nor any related chair in psychiatry. Less than 3 percent of National Institute of Mental Health funds are spent on geriatric problems. . . . The mental health of the elderly is an even gloomier uncharted sea. Depression and anxiety states are commonplace. People over 65 account for more suicides than any other age group. Twenty-five percent of total suicides is the usual figure given, but it is probably higher. Many such suicides can be classified as “rational" in the sense that as people grow older they have more and more to be depressed about. Continuing loss of loved ones, grief, increasing isolation, fear, and anxiety about doctors and disease, financial worry, and reluctance to see one's life savings dissipated on one's own prolonged demise are entirely realistic reasons to despair." Our Associations can add little to this commentary except to confirm its content. There is a need to develop a national strategy to meet the mental health needs of older persons. These conditions must receive attention equal to that given the physical health needs. Our Associations believe that mental health needs of older Americans are not being met. The enactment of both Title III and Section 603 of H.R. 2954 is a necessity.

In closing, our Associations wish to reiterate the view that long range policy objectives which are cost-conscious should not be thwarted by short range economies. Our support of the home health and mental health amendments to H.R. 2954 are not only responsive to the identified health needs of older Americans but are predicated on the development of a full spectrum of health services within our nation. Our Associations are concerned that the elderly are not utilizing the kind of health services they probably need to the extent necessary, with the possible exception of acute inpatient hospital care. Despite increased social visibility and increased levels of public funding in their behalf, there is ample evidence to indicate that the aged, and particularly the chronically ill and disabled, have not been particularly successful in securing appropriate health services. The misallocation of resources has created the unfortunate circumstances of skewed attention to the acute episodic needs while the equally important chronic ailment needs have been neglected. H.R. 2954 offers a positive approach to developing those resources currently underutilized.

STATEMENT OF JOHN J. MCCARTHY, JR., M.D., PRESIDENT, BOARD OF DIRECTORS, NATURAL FAMILY PLANNING FEDERATION OF AMERICA, INC.

The Discrimination Being Perpetrated Against the Users of Natural Methods of Family Planning Under the Family Planning Services and Population Research Act of 1970

Because of an apparent misunderstanding of the intent of Congress, DHEW has perpetrated an interpretation of the Regulations regarding the implementation of the Family Planning Services and Population Research Act of 1970 which has prevented hundreds of thousands of women from receiving the family planning services they both need and want. The Congressional purpose was made very specific when it declared that the reason for the Act was "to assist in making comprehensive voluntary family planning services readily available to

all persons desiring such services." Unfortunately, this purpose has not been fulfilled because of contradictory interpretation of the Regulation.

I. TWO SETS OF STANDARDS

DHEW has established two sets of standards for the provision of family planning. The first set of standards, applied to the providers of various types of artificial contraception, are so flexible as to allow over 99% of the funds to be used for these methods. The second set of standards have been drafted for the providers of the natural methods. These are so restrictive that it is almost impossible to secure funds under this Act.

A. Funding discrimination

When making inquiry to DHEW for a constituent concerned about the need for natural family planning services in Texas, Senator Tower received the following reply from Paul B. Batalden, M.D., Assistant Surgeon General, Director, Bureau of Community Health Services:

"The Title X Regulations published in the Federal Register on September 15, 1971, to implement the Act's program for the support for family planning service projects require, in part, that a family planning project to be eligible for support under the program of assistance established by the Act, must provide 'for use of a broad range of medically approved methods of family planning including the rhythm method.' Hence, an agency which provides instruction in the rhythm method of family planning but does not also make available other forms of family planning services cannot qualify as a grantee under Title X and the attendant regulations."

Subsequent correspondence with Carl Shultz, M.D., Director, Office of Population Affairs, DHEW attempted to point out that the proposal in question was submitted "to see that the existing legislation is carried out by providing the means whereby those seeking the natural methods of family planning may receive this service." The rationale submitted with the letter pointed out that "the regulation quoted by Dr. Batalden was, in fact, not being met in Region VI." No effort was made to rectify the lack of provision of "the rhythm method" in this Region nor were any steps taken to cut off the funds from these programs. This Region is not the exception, but the rule. Similar discrimination occurs in every Region. To date no official explanation has been received from the appropriate DHEW office regarding this one-sided interpretation of the Regulations, i.e., if you provide artificial contraception but not "the rhythm method" you can be a grantee, but if you provide the "rhythm method" but not artificial contraceptives you cannot.

In practical application this dual understanding of the Regulations has resulted in less than $350,000 being awarded for natural family planning services in FY74 while over $90,000,000 of Title X appropriations were invested in the provision of artificial contraception.

B. Quality assurance

Title X Regulations are very specific in their delineation of the minimum quality assurance standards that must be met by a project applicant. They require family planning medical services to "be performed under the direction of a physician with special training or experience in family planning" (59.5 (a) (6)), that all project personnel be adequately prepared through "pre- and in-service training" (59.5 (c)), that the provision of medical services related to family planning including physician's consultation, examination, prescription, continuing supervision, laboratory examinations, contraceptive supplies, and other necessary referral to other medical facilities when "medically indicated" (59.d), and that provision be made for "effective usage of contraceptive devices and practices," (59.5 (p)). Additional sections outline other quality assurance aspects of the program.

On March 31, 1972 the National Center for Family Planning Services circulated an interim statement of standards entitled "Preferred Standards of Health Care in Family Planning Programs," Although never adopted as policy, they do reflect the dual standard applied to the two methods. For artificial contraceptives, a carefully spelled out program of prescription and follow-up is detailed. The natural methods are subsumed under diaphragm, foam, condom, rhythm with the statement-"Lack of patient acceptance is the only usual contraindication to the use of these methods." Further, regarding follow-up, the

instructions read "Other methods: Other methods do not require a follow-up visit for medical review or examination prior to the required annual visit." The natural methods require a very specific follow-up regime for the user. This follow-up requires a team approach in many instances of M.D., nurse, and teaching couple. At a minimum, the follow-up must be carried out by an R.N. or a carefully trained social worker. Perhaps the best illustration of the dual approach to quality care was the statement made by a Federal official on January 28, 1975 when it was pointed out that in a specific community natural family planning was not available. The reply was that the patient had only to write to the Regional Office of DHEW and information would be provided. In the event there were no providers in her area, "correspondence courses would be supplied." Obviously, if members of the national staff of DHEW perceive that natural family planning can be handled by "correspondence courses," providers of care hold the same opinion. This complete disregard of the Regulations, but more importantly of people's lives and their freedom of choice, is appalling.

II. DIGNITY OF THE INDIVIDUAL

The intent of Congress as expressed in the original legislation and reflected in the Regulations by DHEW was to protect the dignity of the individual and to protect the right of choice. The Regulations deal with three main areas of patient safeguards-civil rights (59.5 (a) (2)), individual dignity (59.5(a) (3)), and protection against "any coercion to receive services or to employ or not employ any particular method of family planning... (59.5(a) (8)).

Two major groups of potential users of the natural methods have been denied services. The first of these are low-income Catholic women who for moral reasons have chosen to follow the dictates of their consciences. In order to secure care, they must look for assistance from agencies providing services which are contrary to their religious beliefs. Although they would prefer to go to a Catholic hospital, for example, they cannot because the hospital cannot secure funding under the present interpretation of the Regulations. If they do request the natural methods, they are usually given a booklet on the failure of calendar rhythm or they are given the choice of artificial contraceptives or sterilization. To receive any service they are forced to choose between an outdated form of natural family planning and morally unacceptable means of family planning. In some instances requests for the natural methods are met with "you're kidding," or other sarcasm.

The second group of potential users are those who have been instructed by their physician to go off the pill or IUD. When they ask for help at the family planning clinics they find none. They cannot secure care unless it is a pill or some other medical means of contraceptive. When these alternatives have been exhausted, they are left without any method at all. On the other hand, natural family planning agencies which cannot for moral reasons refer a patient for other methods are denied the opportunity even to provide service to those seeking natural family planning methods. What further compounds the problem of obtaining natural family planning services is that the family planning clinics with no particular moral convictions deny natural family planning services by failure to make proper referrals to agencies offering such care. These agencies are not disciplined by DHEW. Yet when an agency providing natural family planning services indicates that they cannot make referrals because of moral conviction, they are denied funding.

Thus, not only are patients forced to violate their moral convictions, but agencies as well. The question must be raised on this dual type of interpretation. Why must an agency or individual be imposed upon because of religious or moral convictions while those without any apparent conviction can stand in violation of the Regulations? This has been brought to the attention of DHEW, but no known case or complaint has been followed up with a field visit or program evaluation.

III. PURPORTED LACK OF DEMAND FOR SERVICE

Potential providers are being continually told by DHEW that because there is no demand for natural family planning services no programs have been developed or likewise need to be funded. Yet, using DHEW's own demographic formula, over 900,000 low income Catholic women want and need natural family planning services. This number does not include many other groups that for medical reasons want a natural alternative. Although Congress has asked by legislation for the submission of a yearly update of a five year plan by DHEW on which to

base its legislative action for the coming year, it has not been informed through this document as to the need for natural family planning services. Further, because no natural family planning services have been made available under this Title, the impression is given that people only request artificial contraceptives. Yet in the same time period as that for which the legislation has provided funding, over 200 natural family planning groups and agencies have sprung up in the United States to meet what the DHEW records would show as no demand. Only six of these agencies can be identified as receiving Title X funds. Of the six, two receive less than $20,000 a year, three less than $40,000, and one less than $80,000.

IV. THE RHYTHM METHOD

One additional concern must be shared in this document. The Regulations refer to the provision "of a broad range of medically approved methods of family planning including the rhythm method" (59.5(6)). Two specific problems are raised by the terminology. The first is that in the natural family planning field rhythm is a technical term used to define calendar rhythm. Although DHEW sought to choose a term to describe the natural methods, it could not have picked a worse designation. Calendar rhythm is an outdated prototype of the natural methods, has had limited success, and in the minds of many is associated with a high rate of user failure. The second problem is more serious. Because the term has developed such negative associations, most family planning programs refuse to provide this type of service. In addition, they do not offer the other methods of natural family planning because they have not received information, inservice training, or education in the effective methods of natural family planning. The term "rhythm" has so stereotyped a particular result that a blind spot has developed which DHEW has not sought to eliminate.

Summary

The obvious misunderstanding of the natural methods by DHEW has led to a double standard of project funding on quality and patient care. It has in fact prevented the intent of Congress from being carried out. Specific legislation is called for which will allow the over 900,000 low income women who want to use the natural methods to receive subsidized quality care.

STATEMENT OF MRS. MARJORIE GUTHRIE, PRESIDENT AND FOUNDER, AND RICHARD BRANAGHAN, EXECUTIVE DIRECTOR, COMMITTEE TO COMBAT HUNTINGTON'S DISEASE

NEEDED A NATIONAL COMMISSION ON HUNTINGTON'S DISEASE

Chairman Rogers and members of the subcommittee, we deeply appreciate the opportunity to testify on behalf of the need to establish a National Commission. I am Richard Branaghan, Executive Director of the Committee to Combat Huntington's Disease. With me is Marjorie Guthrie, President and Founder of the Committee, whose husband, Woody Guthrie, was one of the finest balladiers and entertainers in the nation prior to the time he fell victim to Huntington's Disease. Woody Guthrie also gave this country a song, "This Land is Your Land, This Land is My Land . . ." which, in a sense, has become a national anthem for young people throughout our country. He was recognized by the U.S. Department of Interior on April 6, 1966, by being awarded the Conservation Service Award. The Honorable Stewart Udall, then Secretary of the Interior, stated in a letter accompanying the award: "In conjunction with this award, we are also nam ing a Bonneville Power Administration Station in your honor. It will be known hereafter as the Woody Guthrie Substation in honor of the fine work you have done to make our people aware of their heritage and their land".

Marjorie Guthrie began work to assure that research and care programs would be developed to prevent and cure Huntington's disease and founded the Commit. tee to Combat Huntington's Disease.

Mr. Chairman, I would like to give you some information about the legislative situation regarding Huntington's disease, as well as insert a background statement on the disease published as part of the 1974 Reserve Program Report of the National Institute of Neurological Diseases and Stroke. Marjorie Guthrie will then tell you about the impact of the disease itself, and how little has been done to find a cause and cure,

At the end of last year, President Ford vetoed the Health Revenue Sharing and Health Services Act of 1974, which contained a provision which had been agreed to by the Senate-House conference on the bill, which was worded as follows:

"COMMISSION FOR CONTROL OF HUNTINGTON'S DISEASE

"SEC. 605. (a) The Secretary of Health, Education, and Welfare shall establish a temporary commission to be known as the Commission for the Control of Huntington's Disease and Its Consequences (hereinafter referred to in this section as the "Commission").

(b) It shall be the duty of the Commission to

(1) make a comprehensive study of the state of the art of medical and social management of Huntingtons disease in the United States;

(2) investigate and make recommendations concerning the proper roles of Federal and State governments and national and local public and private agencies in research, prevention, identification, treatment, and rehabilitation of persons with Huntington's disease;

(3) develop a comprehensive national plan for the control of Huntington's disease and its consequences based on the most thorough, complete, and accurate data and information available on the disorder; and

(4) transmit to the President and the Committee on Labor and Public Welfare of the Senate and the Committee on Interstate and Foreign Commerce of the House of Representatives, not later than one year after the date of enactment of this Act, a report detailing the findings and conclusions of the Commission, together with recommendations for legislation and appropriations, as it deems advisable.

(c) (1) The Commission shall be composed of nine members to be appointed by the Secretary of Health, Education, and Welfare. Such members shall be persons, including consumers of health services, who, by reason of experience or training in the medical, social, or educational aspects of Huntington's disease, are especially qualified to serve on such Commission.

(2) The Secretary shall designate one of the members of the Commission to serve as Chairman and one to serve as Vice Chairman. Vacancies shall be filled in the same manner in which the original appointments were made. Any vacancy in the Commission shall not affect its powers.

(8) Any member of the Commission who is otherwise employed by the Federal Government shall serve without compensation in addition to that received in his regular employment, but shall be entitled to reimbursement for travel, subsistence, and other necessary expenses incurred by him in the performance of his duties on the Commission.

(4) Members of the Commission, other than those referred to in paragraph (8), shall receive compensation at rates, not to exceed the daily equivalent of the annual rate in effect for grade GS-18 of the General Schedule, for each day (including traveltime) they are engaged in the performance of their duties and, while so serving away from their homes or regular places of business, each member shall be allowed travel expenses, including per diem in lieu of subsistence in the same manner as is authorized by section 5703 of title 5, United States Code, for persons in Government service employed intermittently.

(d) The Commission shall cease to exist thirty days after the submission of the final report required by subsection (b) (4)."

We must, however, express a concern that the legislative language appearing in the bill would not serve the purpose intended. Simply put, there is no authorization for appropriations in the language. Thus, there really is no way for the Commission to become operative. There will be no staff, no money to pay for consultants or members of the Commission, and no money for studies. The bill, then, must contain language including the following elements:

(a) authorization for the Secretary of HEW to carry out the functions of the Commission, including hiring staff, and making grants and contracts; (b) language indicating that such sums as necessary may be appropriated to carry out the functions of the Commission.

This provision would be very helpful to all those concerned with Huntington's Disease. Of course, we had been hopeful earlier that the amendment to the Senate-passed bill, sponsored by Senator Clark of Iowa, and which had 21 cosponsors, would be agreed to by the House. Because we had no opportunity to appear before your subcommittee, inasmuch as the bill immediately went to conference after Senate passage, we could not make the case before you for acceptance.