In addition we have also enclosed a copy of testimony given by Jack McAllister, which demonstrates clearly what DD legislation has done in the State of Florida, as just one example of the need and worth of DD efforts. Your consideration in this matter is deeply appreciated. Most sincerely, LEONARD G. PERLMAN, D.Ed., ENCLOSURES Associate Executive Director, Government Liaison and Program Development. STATEMENT OF JAMES MACDONALD WATSON, M.D., ON BEHALF OF EPILEPSY FOUNDATION OF AMERICA Mr. Chairman, Members of the Committee, on behalf of Epilepsy Foundation of America and the approximately four million Americans with convulsive disorders, let me express our appreciation for this opportunity to present our views to you. It is indeed an honor. At the risk of appearing mawkish, permit me the opportunity to initially speak to a rather provincial point: that of the gratitude of our organization and its volunteers and afflicted constituencies for so promptly acting on a proposal to extend the first public law in recent history to attempt to provide a modicum of service to a profoundly needed population. Thirty-five years ago, we had centers for the care, treatment and habilitation of persons with epilepsy. Then a new medication-diphenylhydantoin, usually known as dilantin--was developed for control of convulsive seizures. We thought that solved the problem, so we eliminated the centers, or "epileptic colonies." Our action, however, was premature; we then discovered that about half of our patients could not achieve complete seizure control. It is to this half, the severely handicapped, that the Developmental Disabilities Services and Facilities Construction Act addresses itself. Programs authorized by DD have served a high percentage of this two million. It is the only public law providing specific services to do so. That it has been effective is exemplified, for instance, by our San Antonio, Texas, Epilepsy Association. Stimulated by a $14,000 DD grant-a small enough sum-this brand new voluntary association moved from virtually no services to a cooperative agreement with a community hospital from which it was able to obtain space and resources for financial assistance, mental health and employment counseling services. It developed a public relations department through which its new activities are promoted, formed a speaker's bureau, and introduced a teacher information program, School Alert, to the community. Today, an average of 60 persons attend monthly organized meetings and a number of patients have received the benefits of professional counseling designed specifically for their needs. With the increased resources provided by yet a smaller DD grant of only $10,200, the Louisiana Epilepsy Association was able to expand its case load from 300 to an average of 1,200 in a nine-month period. Counseling services were added for parents and teenagers; and the development of a system of public information exhibits, media packages and a speaker's bureau were made possible. Building on the base provided by DD, and using its volunteer initiative, this chapter was also able to obtain an additional $23,225 to provide a gas liquid chromotography unit in its community hospital. Of the first forty epilepsy patients to have blood serum levels of anti-convulsants analyzed by this method, ten were determined to require an adjustment of medication. I could go one with examples to document the needs and the progress this legislation has made toward the solution of the needs, but my point in summary is that this program has served to provide help to countless hundreds of people who have for 35 years lacked access to an understanding counselor's ear, a job, a method of determining what kinds and how much medication they require, and protection of the "inalienable" rights of a constitutional person in our society. My second point requires a brief review of the historical base of S. 427. From its inception 10 years ago when its purposes were to (1) stimulate the development of a network of facilities for service delivery to the mentally retarded; (2) develop needed manpower; and (3) encourage research into the problems of mental retardation, the program has grown. Initial staffing grants for community mental retardation facilities were added in 1967, as well as provisions for contruction of facilities for major programs of interdisciplinary training of mental retardation medical and allied manpower. In 1970, when it became apparent that a great deal of effort was being expended in programs for the mentally retarded, with a total dollar figure of $606,970,000 in HEW alone, the legislation was wisely expanded to include services to persons with epilepsy and cerebral palsy-other neurological handicaps with a need indeed as great. This expansion brought new emphases: (1) the marriage of several neurological disorders; (2) concentration on the most severely handicapped; and (3) stress on accessing existent community resources and facilities. This continued expansion proved the health of the concepts; but as with all maturation processes, growing pains are beginning to be felt. While we are yet only three years into the new philosophy-with insufficient time to have adequately evaluated its propriety and progress-attempts to fertilize it perhaps too much are being made by various interest groups and organizations. This is a danger we must avoid. Too many government programs have forgotten their mission; too many have strayed from the path leading to the original goals established; and as a result, too many have not been successful-indeed are being phased out. DD must not go this way. Let us, then keep it-essentially as it is. With the wide discrepancies between authorizations and appropritaions for DD, the minimal sums it is likely to secure can help develop innovative attacks on a set of neurological problems. It can provide much assistance to an underserved, brain damaged population. It cannot-without massive injections of money-also attempt to service groups which are no less needy, but which may receive their own tailor-made services through crippled children's programs, mental health programs, maternal and child health services, handicapped educa. tion programs, services for the blind, the deaf, and many others. Those concerned with Developmental Disabilities need to remember its mission to serve the neurologically handicapped. It needs to grow-but not too far, too fast. It needs to assess the validity of its yet new concept. It needs to retain its well-considered emphasis on those in our society who most need its services. And it needs time to adjust to its new clothes. In short, the Developmental Disabilities Services and Facilities Construction Act is needed-and essentially just as it is. Mr. Chairman, Members of the Committee, I thank you. 1 STATEMENT OF JACK MCALLISTER, DIRECTOR, DIVISION OF RETARDATION, DEPARTMENT OF HEALTH AND REHABILITATIVE SERVICES, STATE OF FLORIDA Mr. Chairman and members of the Subcommittee, it is with a great deal of pleasure that I have the opportunity to emphasize the intense need to support the Bill bfeore you which calls for a National Commission on Epilepsy. I am Jack McAllister, Director of the Division of Retardation in the Department of Health and Rehabilitation Services for the State of Florida. I would like at this time to describe some of the events taking place in behalf of persons with epilepsy in Florida. As the Honorable Chairman of this Subcommittee (Paul Rogers) was the sponsor of the Developmental Disabilities legislation in 1970, you will be pleased to know of the inroads established as a direct result of this mandate. For example, the combined efforts of the Florida Epilepsy Foundation, Florida's Department of Health and Rehabilitative Services Division of Retardation, Developmental Disabilities Advisory Council and significant action by Governor Ruben Askew, have resulted in two years of exemplary action planning and specific steps to coordinate existing resources, identify areas of unmet needs and crystallize the State's responsibility for services to persons with epilepsy. In July, 1972, a Developmental Disabilities Planning Grant was awarded to the Florida Epilepsy Foundation which provided the vehicle for an intensive, Statewide planning effort which culminated in a Five-Year Action Plan. A copy of the finished Five-Year Action Plan for Epilepsy was presented to each State agency in Florida. This Plan was identified as capable of providing services to persons with epilepsy. A majority of the agencies were represented on the Developmental Disabilities Council (DD) and, therefore, had been involved early in the planning. Progress to date in the implementation of the Five-Year Plan for Epilepsy has moved along rather well for this long ignored problem area and thus far, this 1 Presented at the hearing before the Subcommittee on Public Health and Environment of the Committee on Interstate and Foreign Commerce on H.R. 13405, August 12, 1974. long-range Plan has proven highly productive in terms of progress for persons with epilepsy. For the Plan serves as a blueprint for bringing about beneficial administrative actions as well as a sound base-line documentation for framing future legislation. Allow me to list but a few of the recommendations, in the various areas: In Medicine, blood level analyses should reach more of the general public throughout Florida who are medically indigent as a screening and diagnostic procedure. In Education, legislation should be enacted to provide a program of school health services with primary emphasis on having a nursing aide available in every school trained to provide improved first aid for the child with grand mal convulsions. In the area of Transportation, documentation was completed on sound administrative procedures to be used in licensing drivers with epilepsy and other disabilities. These results confirm the need for legislative action to avoid possible discrimination. In the Administrative realm, consideration is being given to change of the name and responsibility of the Division of Retardation to be consistent with Developmental Disabilities, thereby focusing on not just one disability group, but on the population described in the mandate. While many other pertinent recommendations were made in areas such as legal problems; day care; employment and recreation; I would now like to describe a few visible positive steps which have just recently taken place. For example, the Florida State Legislature has appropriated $562,500 to provide a State-wide system of information and referral, social work services, and the provision of neurological assessment for the needy. In the area of Employment, legislation was enacted to provide subsidization by the State of around $500,000 to sheltered workshops who served the substantially handicapped developmentally disabled, including the person with epilepsy. These funds should serve as an incentive to workshops to give greater attention to these persons. In addition, the State Vocational Rehabilitation Agency has assigned one counselor to serve in each of the State's 16 regions. Those assigned will be receiving intensive training in epilepsy rehabilitation during September of this year and work closely with the Epilepsy Foundations throughout the State. Also of significance is the fact that blood level analyses of anticonvulsant medication was to be completed on all institutionalized clients of the Department of Health and Rehabilitative Services within this year to upgrade medical care in all State institutions. This is but a sampling of the progress derived to date from the Action Plan. A Plan which served as a blueprint for bringing about beneficial administrative actions as well as a sound base-line documentation for framing needed legislation. We highly recommend that a similar long-range action plan be developed for the nation-and for this reason, urge your consideration of the Bill before you calling for a National Commission on the Epilepsies. The Five Year Action Plan for Epilepsy in Florida has proved to be highly successful, and I feel strongly that the establishment of a National Advisory Commission to develop a National Plan for the Control of Epilepsy and its Consequences will prove highly successful for the Nation. AMERICAN HEART ASSOCIATION, Re Health Revenue Sharing and Health Services Act of 1975. DEAR CONGRESSMAN ROGERS: We estimate that 22,340,000 Americans have some elevation of blood pressure (hypertension). Approximately half of those with hypertension, however, do not know they have it, and surveys of various population groups indicate that only 10 to 20 percent of hypertensives are currently receiving treatment. Increased funding from public sources is certainly necessary to correct this imbalance. For this reason, addition of health revenue sharing money to the The National Cancer Foundation and Cancer Care, Inc. believe that adequate insurance coverage is the only means by which most American families can meet the devastating costs of longterm catastrophic illness. Some form of medical insurance was the main source of funds for most families in our study. Only 3% of the study group were without any form of medical insurance. The median picture of these families showed that illness-related costs amounted to $19,054, the median annual income available to pay these costs was $8,000, and the median medical insurance payments were an insufficient $5,000— a $14,000 gap! Can you picture being faced with medical bills amounting to two or three times your annual income? Note that in addition, the expenses for food, clothes and shelter for the family that had to be paid out of this same income. The 115 families (448 people) in the study expended almost 21⁄2 million dollars just to sustain and care for their family members who were dying from advanced cancer. This did not include the voluntary dollars contributed for professional social work services which all these families received. INADEQUACY OF CURRENT HEALTH INSURANCE COVERAGE Total illness-related costs over $10,000 were incurred by 84% of the study families but only 39% received medical insurance payments of that amount or more. Specific examples indcated the inadequacy of most insurance coverage. One family with an income of $11,000 had medical costs of $43,000. About onehalf was paid by Blue Cross/Blue Shield and a special health policy. But a family loan of $12,000 was required to pay the additional costs. In another case, illness lasting nine months cost $15,675. About one-quarter was paid by health insurance. Those without adequate insurance used savings, cashed in life insurance policies, mortgage property, took out bank loans, and utilized so much current income for medical bills that the family could have only bare necessities. The father of several children with a normally sufficient income was obliged to use $15,000 of his savings, borrow substantial amounts, and was left with nearly $8,000 in unpaid bills at the end of his wife's illness covering more than five years. He stated that insurance paid $12,000 for hospital bills, but they amounted to $20,000. His doctor's bills amounted to another $20,000. Sometimes, when Cancer Care is trying to help the family work out a budget, unpaid bills for patient care and running the household are brought to the office in shopping bags. Catastrophic illness coverage should be an integral part of a comprehensive plan for national health insurance. It should not be a separate and individual program. NEED OF HEALTH INSURANCE FOR THE ENTIRE FAMILY AND EVERY FAMILY The agency takes a strong position on this point for the following reasons: Our experience indicates that health insurance is needed for the entire family and for every family. Ability to secure and pay for adequate medical care in the early stages may prevent serious trouble later. The agency's study also revealed a surprising number of multiple health problems. The patient may have several diseases at the same time, for example, diabetes and heart disease in addition to cancer. Also, in many of the cases there were other health problems in the family at the same time. A husband had a coronary one month after his wife became ill with cancer. He was unable to work for five months, and only then for shorter hours and less pay. A wife suffered a coronary after the first two years of her husband's illness. In a family of four adults, in a short space of time one died, one became seriously ill with cancer, another had a serious back ailment, and the fourth "fell apart” from fatigue and tension and required psychiatric care. One woman suffered recurrence of psychiatric problems when her husband became ill with cancer. The recurring instances of need for psychiatric help for the patient and family members, particularly children; and the reports of neglect of dental care further illustrate the need for a genuinely comprehensive insurance coverage for preventive care as well as illness. There is also a danger that catastrophic illness insurance might be considered a substitute for a comprehensive plan to meet the health needs of all persons. NATURE OF THE AGENCY'S SERVICE Cancer Care, Inc. is a unique service agency in the health care field. Its purpose is to help patients and families cope with multifaceted problems of caring for an advanced cancer patient at home. These patients have usually been dismissed from further intensive in-patient hospital care. They must return home, enter a nursing home or other extended care facility, or make some special arrangements. Most patients want to return home, if possible. It is usually at the point of the patient's imminent return home that referral is made to Cancer Care, Inc., often by the social service department of the hospital. Providing adequate and appropriate care for a seriously ill patient at home is itself a problem. Maintaining an orderly household with normal family relationships and a positive emotional environment may be even more difficult. Household management is more complicated when there are children, when a parent is the patient and other adult members of the family must work. These heavy responsibilities often fall on persons who are unfamiliar with helping resources in the community, and who are worried over costs which have strained or drained family financial resources. There is, above all, the emotional stress of day and night contact with a family member who is seriously ill and often in great pain. A staff member of Cancer Care, Inc. helps the responsible member of the family work out a feasible plan for care at home taking into account such factors as the family constellation, financial situation, condition of the patient, and prognosis of the physician. The agency then arranges whatever assistance is needed in carrying out the plan, making a budget, and helping to secure the special services needed. If necessary some portion of the cost is borne by the agency. BASIS FOR OPINIONS AND RECOMMENDATIONS EXPRESSED IN TESTIMONY EXPERIENCE AND RESEARCH I would, therefore, stress that the opinions and recommendations expressed here about catastrophic illness coverage as part of a plan for national insurance coverage are based on 27 years of intimate day-to-day contact with advanced (usually terminal) cancer patients being cared for at home. This experience is further buttressed by an in-depth study of a selected number of client families in which the patient had died within the preceding 16 months. A copy of the study report entitled, "The Impact, Costs and Consequences of Catastrophic Illness on Patients and Families," has been provided for each member of the Committee. The study gathered data in the five general areas of: 1. Income and composition of the family 2. Duration of the illness from onset to death 3. Total costs of the illness, by category 4. Sources of funds to pay the costs of the illness, by category 5. Hardships, other than financial, related to the illness This social research is a revelation of what it means to total families to have a member stricken with a severe, irreversible illness. It shows that middle-income families can be reduced to poverty in less than two years. Catastrophic illness means catastrophic costs-which most families are unable to pay. Participants in the study were self-maintaining families with middle to low incomes, who are covered by private medical insurance and who are responsible income producers-accustomed to and expecting to pay their bills. The question, "Why must catastrophic illness bankrupt the middle-class family?" deserves an answer. The purpose of the research was to document facts on behalf of the families faced with catastrophic illness defined by our agency as "An illness that the patient and his family are not able to cope with, using the attitudes, machinery, and resources normally available. Such an illness has no apparent satisfactory conclusion, and can lead to the exhaustion of both the patient's and family's emotional and financial resources, or to the patient's death." Some of the major findings of the study will be cited in this testimony to support the agency's views on those provisions of National Health Insurance bills under consideration, pertinent to catastrophic coverage. 1 The Impact, Costs and Consequences of Catastrophic Illness on Patients and Families, Cancer Care, Inc. of the National Cancer Foundation, Inc., New York, N.Y. March, 1973. |