REPORT OF THE SURGEON GENERAL'S WORKSHOP ON FHILDREN WITH HANDICAPS AND THEIR FAMlL[ CASE EXAMPLE: THE VENTILATOR- Presented by the U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Public Health Service Health Resources and Services Administration Bureau of Health Care Delivery and Assistance Division of Maternal and Child Health In Conjunction With THE CHILDREN'S HOSPITAL OF PHILADELPHIA DECEMBER 13TH AND 14TH 1982 M-6 PUBLICATION NO. PHS-@3-50194 It is profound& important for our society that we tend to these issues of disabled children, that these children not be forgotten or pushed aside, and that we retain our belief in the strength of the American family. -C. EVERETT KOOP, M.D. SURGEON GENERAL The Surgeon General's Workshop on Children With Handicaps and Their Families was supported by grants from the U.S. Department of Health and Human Services, The Widener Memorial Foundation, and Heron Respiratory Services, Inc. Photos Courtesy of The Children's Hospital of Philadelphia THE WHITE HOUSE December 10, 1982 Dear Friends: This brings my special greetings to each of you participating in the Surgeon General's Workshop on Children with Handicaps and Their Families. I want to encourage you in this very important endeavor. For many children facing physical difficulties, there is no place like home and no substitute for being close to a loving fam- ily. I am hopeful that ways can be found to make it possible for many more children on life-supportive devices to go home. It will mean more than we know to both the children and their parents. The entire family will derive untold strength from being together. I thank you from the bottom of my heart for your interest in helping our special children. You have my warmest best wishes for a success- ful workshop. Sincerely, The Surgeon General's Workshop on Children with Handicaps and Their Families The Children's Hospital of Philadelphia Philadelphia, Pennsylvania PREFACE The Surgeon General's Workshop on Children With Handicaps and Their Families recognizes our continuing interest in assisting the family as the prime source of nurture, support, protection, and guidance to the grow- ing child. Children with handicaps and their families frequently require long-term medical, social, educational, vocational, habilitative, and com- munity service assistance. This concept is essential to the provision of com- prehensive services to children with special needs. Families of these children, including siblings, often need significant psy- chosocial support, but community support services are often lacking or not visible. Without the needed support, the family will have difficulty in help- ing the child, a growing individual moving through predictable developmen- tal stages, achieve maximum development within the limitations imposed by a disability. The goal of the participants at this Surgeon General's Workshop was to develop recommendations for strategies to recognize the special burden and challenges borne by the parents and siblings of children with disabililties and to stimulate the provision of resources to safely support these children in their communities. The achievement of this goal will, ideally, minimize the problems of children with disabilities. C. Everett Koop, M.D. Surgeon General . . . 111 - 1 ,a-. . PLANNING COMMITTEE Planning Committee for the Surgeon General's Workshop on Children With Handicaps and Their Families WORKSHOP CHAIRMAN WORKSHOP DIRECTOR COMMITTEE MEMBERS Robert G. Kettrick, M.D. Department of Anesthesiology and Critical Care The Children's Hospital of Philadelphia Merle G. McPherson, M.D. Medical Officer Division of Maternal and Child Health Department of Health and Human Services Michael D. Batten White House Aide Presidential Correspondence The White House Shirley Bonnem Vice President The Children's Hospital of Philadelphia Camille Cook, M.S. Nursing Consultant Division of Maternal and Child Health Department of Health and Human Services Glenna Crooks, Ph.D. Deputy Assistant Secretary for Health Planning and Evaluation Public Health Service Washington, D.C. Judson Force, M.D. Chief, Division of Crippled Children Services Department of Health and Mental Habilitation Baltimore, Maryland V COMMIT-I `EE MEMBERS Allen I. Goldberg, M.D. (continued): Director, Division of Respiratory Care Children's Memorial Hospital Chicago, Illinois Alfred Healy, M.D. Chairman, Division of Developmental Disabilities University Hospital School University of Iowa Iowa City, Iowa Vince L. Hutchins, M.D. Director, Division of Maternal and Child Health Department of Health and Human Services Rockville, Maryland Anne Keller, M.D. Director, Division of Rehabilitation Bureau of Professional Health Services State Department of Health Harrisburg, Pennsylvania John MacQueen, M.D. Iowa Specialized Child Health Services University of Iowa Hospitals and Clinics Iowa City, Iowa Phyllis R. Magrab, Ph.D. Director, Child Development Center Georgetown University Hospital Washington, D.C. Benjamin K. Silverman, M.D. Co-Editor, Clinical Pediatrics Princeton, New Jersey Phyllis Zucker, M.P.H. Chief, Resources Branch Division of Policy Analysis Office for Health Planning and Evaluation Washington, D.C. vi WORKSHOP PROGRAM December 13, 1982 8:oo a.*. - I I:45 a.m. Plenary Session Joseph Stokes Auditorium The Children's Hospital of Philadelphia Presiding Merle G. McPherson, M.D. Chief, Habilitative Services Branch Division of Maternal and Child Health United States Department of Health and Human Services-Public Health Service Welcome Noel E. Kroncke, President The Children's Hospital of Philadelphia Ginny Thornburgh Advocate for the Handicapped James A. O'Neill, Jr., M.D. Surgeon-in-Chief The Children's Hospital of Philadelphia Thomas W. Langfitt, M.D. Vice President for Health Affairs University of Pennsylvania 8:30 a.m. Keynote and Charge Robert G. Kettrick, M.D. Director, Pediatric Intensive Care Unit Intermediate The Children's Hospital of Philadelphia C. Everett Koop, M.D. Surgeon General 9:00 a.m. Ventilator-Dependent Children: The Problem Robert G. Kettrick, M.D. 9:45 a.m. The Child at Home Mrs. Bette Wartenberg Parent of a Ventilator-Dependent Child Joliet, Illinois IO:45 a.m. Comprehensive Repmnahzed Care: New York Exnerience Mathew H.M.Lee. M.D. Professor and Director, Howard A. Rusk Resoirator Rehabilatation Medicine Depar'tment of Rehabilitative Medicine New York University Medical Center Goldwater Memorial Hospital New York, New York vii ll:IS a.m. Towards a Consortium: The Illinois Approach I I:45 a.m. Question Period 12:IS p.m. Presidmg Invocation Children with Disabilities- Implications for Care 2:00 p.m. Background for Work Group Discussion 2:30 - 5:30 p.m. December 14, 1982 8:fKl a.m. 2:00 p.m. - 5:00 p.m. Plenary Session- Summation Presiding Presentations from Wc Groups Synthesis of Recommendations Presentation to Surgeon General Acceptance of Recommendations Conclusion Allen I. Goldberg, M.D. Director, Division of Respiratory Care Children's Memorial Hospital Chicago, Illinois Arthur F. Kohrman. M.D., Director LaRabida Children's Hospital and Research Center Chicago, Illinois Eugene Bilotti, Administrator Supplemental Security Income (SSI) Disabled Children's Program Springfield, Illinois Morning Speakers Luncheon Salons A and B Hilton Hotel of Philadelphia C. Everett Koop. M.D The Reverend William Atkinson. O.S.A. Alfred Healy. M.D. Chairman, Division of Developmental Disabilities University Hospital School Universtty of Iowa Iowa City, Iowa Phyllis R. Magrab. Ph.D. Director, Child Development Center Georgetown University Hospital Washington, D.C. Workshops Work Groups Joseph Stokes Auditorium The Children's Hospital of Philadelphia Robert G. Kettrick, M.D. ,rk John MacQueen, M.D. Director Iowa Specialized Child Health Services University of Iowa Hospitals and Clinics Iowa City, Iowa Robert G. Kettrick. M.D. C. Everett Koop, M.D. Richard D. Wood, Chairman Board of Managers The Children's Hospital of Philadelphia . . . Vlll CONTENTS Page INTRODUCTION.. ......................................... WELCOMING ADDRESS .................................... EXCERPT FROM KEYNOTE ADDRESS. ...................... PRESENTATIONS OF PROGRAMS FOR CARE OF VENTILATOR-DEPENDENT CHILDREN. .................. The Pennsylvania Program .................................. The New York Experience ......... i. ........................ The Illinois Plan ........................................... TheChildatHome ......................................... WORK GROUP RECOMMENDATIONS ....................... Introduction to Work Groups ................................ Recommendations. ......................................... CHILDREN WITH OTHER HANDICAPS ..................... Children with Disabilities: Implications for Care ................ Implications for Care: The Title V Perspective .................. Implications of Workshop Recommendations .................. SUMMARY OF THE WORKSHOP ............................ APPENDICES A-Participants. ........................................... B-Facilitators and Recorders. ............................... C-Prototype Home Program Review for Ventilator-Dependent Children ........................ D-Selected Readings. ...................................... 11 11 17 20 27 31 31 32 41 41 48 50 53 56 62 63 67 ix INTRODUCTION The health of most American children has improved remarkably over the past two decades. Low-birth-weight or otherwise vulnerable newborns who remain in the hospital long after birth have benefited from increasingly so- phisticated technology. The technology, often requiring extended hospital care, has an unwanted side effect of subjecting these infants to abnormal environmental conditions, including separation from parents. The opportu- nity for close parent-infant contact is limited, and parents may have prob- lems relating to the child in a home environment. Resources within the community have not been developed, or if present, are not organized to encourage early discharge and to assist the family in aiding their child. Those newborns with their disabilities and continuing needs are dramatic examples of a more pervasive problem. Of the unmet health care needs of American children, the needs of children with handi- caps are those most deeply felt. To promote an understanding of these needs and to develop strategies to meet them, Dr. Koop convened the second Surgeon General's Workshop at The Children's Hospital of Philadelphia, December 12-14, 1982. The Workshop on Children With Handicaps and Their Families brought to- gether health professionals, financing experts, consumer representatives, patients and families, and local, State, and Federal Government officials for analysis and discussion of the subject. The major objectives were twofold: (1) to examine the problem of serv- ices delivery to handicapped children and their families in order to develop strategies for providing community-based services as an alternative to acute care facilities; and (2) to examine current funding mechanisms for providing services in order to develop new strategies of improving financing for safe, appropriate, and cost-effective health care for these children and their fami- lies in nonacute care facilities. The Workshop focused on four basic goals: o To strengthen the families' ability to cope; o To promote adequate support services on a community basis; o To organize and coordinate existing community resources on a regionalized theme; and . To identify and remove legislative, financial, and other barriers. Following the keynote address and the presentation of model programs for care of the ventilator-dependent child, the participants were assigned to small Work Groups. Their duties were to: o Plan an organizational approach to health care for ventilator-dependent children and their families; o Promote family and patient autonomy for care in home or community environments; o Develop strategies for organizing and providing this care in a cost-effective manner; o Recommend monitoring processes for quality assurance and funding dynamics; o Draw implications for nationwide care for all children with handicaps; o Suggest areas for continuing study. Because of the complexities involved in attempting to cover all handicaps, the Work Groups concentrated on' the severe, specific problems of the ventilator-dependent child as a prototype for discussion. These findings were extrapolated for all handicapped children. The participants reconvened in plenary session to present their findings and to develop a synthesis of their recommendations. Workshop Chairman Robert G. Kettrick, M.D. conceptualized the deliberations in a summation to the Surgeon General, who accepted and commented on them. This report is designed to disseminate the conclusions of the Workshop to the widest possible audience. WELCOMING ADDRESS Ginny Thornburgh, Advocate for the Handicapped We are proud to welcome you from across the nation to Pennsylvania and to Philadelphia. We are particularly proud to welcome the Surgeon General back to Children's Hospital. There's no place like home. I'm not here because I'm the wife of our governor. I'm here because I'm a mother. I'm the mother of Peter Thornburgh, who is a superbly hand- some, superbly fine young man whdhappens to be mentally retarded. Peter would have been institutionalized had he not had superb medical care, very fine community services, and a willing family. I think that represents the kind of family we're going to be talking about here. The goal of this Work- shop is to devise public and private methods for handicapped children to live as independently as possible. We are very, very proud in Pennsylvania to have responded to the needs of ventilator-dependent children. Two years ago, I visited the unit here in Chil- dren's Hospital where I met a number of ventilator-dependent children and their moms and dads and brothers-in-law and uncles. All of these children wanted to be home. Among the children I met was my friend, Jill Eshelman, who is here today. Jill is a ninth-grader in public school in Pennsylvania and now lives at home with her mom. That's possible in Pennsylvania, and it's going to be possible in your State also, I hope. But the ventilator-dependent children are only the tip of the iceberg. Solving that problem alone won't solve the problems of handicapped children. There are going to be three things that are necessary, in my opinion, to allow handicapped children to live as independently as possible. First of all, we've got to get physicians and health planners to be willing to respond in a creative way-not just the old tried and safe ways but in ways that are new and exciting and right. Number two, the advocates. That's what I call myself. Do you remember in reading about Socrates the word gadfly? I love that word, and I consider myself a gadfly on the system. Advocates today have to be politically realis- tic. Solutions to the problems of the 80s are not going to happen just be- cause they are right or just or compassionate. They also have to be sound fiscally. The advocates of today have to be smart politically and seek their goals in a sound political way. Number three, the general citizenry, the people of the nation. The people have to be willing to become educated. There is a lot to learn about disease and health and syndromes and medical care. The citizenry has to be willing to learn, and you and I have to approach them on their level. If we don't elevate the educational level of the citizenry, the legislators are not going to vote the funds for us to get our programs through. The parents, too, have to be willing to take a risk. I know that. I've done it with my son, time and time again. Risky decisions were made, and I was willing to say "yes." Two years ago, I was willing to say "yes" when he moved out from under my wing to a group home in the community. Try that when you're a mom or dad and when you know what the system's like. It's tough. But it's working. Peter Thornburgh, so that you'll know how fine he is, is a very dependable person. He now rides the public bus, transfers, rides another bus. He now cooks scrambled eggs for himself, turn- ing on the burner. You know, I never would have let him turn on the burner at home. And last night, he called his best girl in Pittsburgh and asked her if she bought a new dress for the Inaugural Ball. So thanks to good policy and thanks to a community that was available when we needed them, Peter Thornburgh is an independent man. You have a task that is not pie in the sky. No more of that. We need a blue-print for action, something Dr. Koop can present to the Nation to al- low disabled children to become as independent as they can. 4 EXCERPT FROM KEYNOTE ADDRESS C. Everett Koop, M.D. Surgeon General and Deputy Assistant Secretary for Health Our task at this Workshop is not an easy one. We are asking each other to deal with very complex issues as we keep in mind the many levels of corn- plexity: the emotional and the moral, the medical and the technological, the social, the psychological, and the financial. Of course, we won't be explicitly attending to each of these levels always. But we know they are there. When we talk about "cost-effective life-support systems," we are implicitly putting some dollar value on a human life. We may not want to admit it, but that's certainly one outcome. So the moral and the technological and the economic do come together, whether or not we feel comfortable about it. There is yet another complication. The lives we are concerned with at this Workshop are new lives. We are able to interact with them, but there is a clear limit to this interaction. We know, for example, that there can be no true "informed consent" with a newborn. So we must turn to the parents of those new lives and assume a joint responsibility through their understand- ing and consent. I think it is essential for the attending physician, in particular, to sit down with the family and carefully go through the nature of the infant's condi- tion, what the medical experience with such a condition has been so far, what kinds of options are open for immediate action, and what kinds of op- tions may be open to the family and the physician later on. It would be a mistake for me to dwell entirely on the potential hurdles and barriers to the care of disabled infants and children. The overwhelming di- rection of infant and child health in this country is toward improved care and better outcomes. The infant mortality rate is still declining: the provisional rate for the 12 months ending in July, the latest figure we have, stands at 11.3 infant deaths per 1,000 live births, the lowest 12-month rate in our history. There had been some feeling in the past year or so that we were hitting a plateau, that the curve would begin to flatten out and we would have to begin deal- ing with the hard-core issues affecting perinatal care in this country. But the curve is not flattening out. It is still going down at about the same angle and we have not yet hit any infant mortality rate that is, for our society, the irre- ducible minimum. Of equal significance is that most of the infant lives we are saving are healthy lives. There is no real evidence so far that the infant morbidity rate goes up as the infant mortality rate goes down. But, in all candor, we have not done the kind of research that's required in order to elevate this conclu- sion above the level of what it really is: our best instinctive, visceral response to the data. Of course, we don't need statistical curves that go sharply up or down to understand the impact a disabled infant has upon the parents and upon the attending medical and social services staffs. Giving birth is a highly complex emotional, psychological, and physical event, even when a healthy baby is delivered. How much more complex it can be when the infant is disabled. All the persons involved-the family and the hospital staff-they all share the feelings of guilt and inadequacy. But medicine and social service cannot take the place of the family. Rather, the professionals should use their talents and expertise to help the family survive and function, to renew its strength and foster its cohesion. For it will be the family that will provide the long-term help required by the disabled infant. The family's daily decisions, routines, and relationships will translate into the support, the therapy, the special education, the recre- ational efforts, and all the other aspects of the best possible quality of life for the disabled child. The overwhelming number of parents of handicapped newborns-over 95 percent-take responsibility for their children, take them home, and try to absorb them into their family life. Our challenge is to help those parents understand, love, and care for their child. As I indicated earlier, even if they do get the best possible guidance, dis- abled infants and their families may still face a future of enormous human challenges in their communities and in their own homes. How much more difficult their lives will be, then, if the initial help they receive from the hos- pital staff is not the very best that's available. Staff excellence, therefore, must form the basis of all our procedures, routines, and work plans. Consensus of Principles A good staff is open to the needs of its patients and draws liberally from the strengths of its own members. A good staff operates on a consensus of principles that form the basis for the way we care for our disabled patients and their families, and, I believe these few principles do have a strong though unspoken power among us. The first principle is to obtain open, direct, andpersonal communicatons with the parents of a disabled child. When an infant is born with Down syndrome, spina bifida, some congen- ital defect, a damaged organ system, a missing or deformed limb, or one of any number of disabling conditions, the physician-patient relationship is no longer casual. It cannot be flip. And it won't be short-term. The physician has to translate the complicated medical terminology into words the parents can understand-and not fear. There are ways to train medical staff-physicians of alf ages, I might add-to settle down to a close, compassionate, highly personal, and possi- bly prolonged relationship with parents who may be setting out on a long and intricate journey in human growth. Young physicians especially need this kind of training. They will have just come from an educational system that measures success almost exclusively in terms of curing and repairing patients and returning them to a normal state. But many disabled neonates cannot be "cured" or readily "repaired." They may never approach what might be considered a "normal" state of functioning at any time in their lives-and their lives may be very brief. A second principle practiced by an excellent staff is this: the staff must recognize and understand ihe natural responses of parents to their disabled baby . . . their feelings of sadness, guilt, anger, even of shame. Parents' questions may come in a rush, but the answers must be given only after a great deal of careful thought. The staff now represents not only medical care-but the outside world as well. In such intense human situations, a staff has many assignments and few choices. No matter how serious the in- fant's condition, it is essential that staff members not transmit in any way a sense of hopelessness or futility, or in effect, go into mourning for a child who is still very much alive, however severe the physical or mental burden. We are outraged at parents who physically abandon their children . . . and I am outraged at physicians who intellectually abandon their patients. No matter how sophisticated our diagnostic technology, it can stiff be wrong. By the same token, the survival power of the human being-even in the tiny newborn state-can be truly awesome. We need to transmit this un- derstanding to parents, even as they verbalize their most troubling thoughts. But I have a particular caveat toraise here. I want to emphasize that re- straining oneself from speaking in terms of hopelessness is not the same thing as offering false hopes to confused and frightened parents. We need to be cautious, honest, and objective with parents. And we need to build on their strengths. At this time we do not have a clear idea of the number of mothers who take home infants born with single or multiple disabilities . . . who try to ab- sorb the information about the care they need . . . or who try to cope with all the attendant problems-but who ultimately decide to surrender their children for adoption or institutionalization. It has been my experience that many of these decisions to give up a child were made by parents who would have been rewarded a hundredfold if they had not given them up but instead had held on for just a little longer and had been given just a little additional support. The child, in the overwhelm- ing number of such cases, would also have had a chance at a more fulfilled and fulfilling life. The third principle emphasizes the full participation of the parents and siblings in all the processes of medical care. In as many ways as possible, a staff needs to demonstrate to the parents that they are needed as partners. It is not artificial, not some ruse to trick them into doing something they ought not to do. Quite the reverse. There is no substitute for loving, caring parents. As soon as possible, the physician and other staff members should try to get the child literally into the hands of the family. A parent staring through a pane of glass at a little baby in a covered isolette over in the corner is not my idea of "family togetherness." Even though the baby may be bandaged, intubated, monitored, and fed with a hyper-alimentation line, the parents can and should touch, and . . . if possible . . . hold and cuddle the child. As a last principle I would say that the medical and social service staffs need to play a positive, active role in linking up the child and the family with available social and medical support groups in the community. In other contexts and for more routine situations we all advocate continu- ity of care and total care for our patients and clients. How much more im- portant is this kind of approach for infants with disabilities? The medical 7 and social service staffs who take this principle seriously have the set of mind and the firm professional commitment to become advocates for their patients and the parents. In that role, they help make the vital connections between home and community resources. People who work in hospitals, clinics, schools, or other service institu- tions are usually familiar with most of the community services net- work-and very often they assume that everyone else has the same informa- tion. But, in point of fact, most people do not. Most people may, on occasion, have used one or another social service or health agency or may have regularly contributed to certain voluntary organ- izations concerned with a particular disease or disability. But when people are faced with the immediate need to get information, apply for help, re- quest certain resources, make connections, make decisions-much of their past experience and knowledge becomes somehow disjunctive. If the parents and the staff have formed a relationship based upon the principles I've talked about this morning-even if they have already made a firm commitment to give their child all the care and love needed-they may still be totally overwhelmed by the byzantine complexity of our social service delivery system. Society may seem to be conspiring against their humanity. I think it's important to remember that "social services" as such are not exclusively the province of the "social service worker." Certainly we expect a greater professionalism from a person trained in this field, but there are many other disciplines within the hospital community that can be helpful, too. I am thinking in particular of that new and extraordinary breed of indi- vidual known as the "neonatal intensive care nurse." They bring to their job a total commitment to child health and welfare . . . not in the abstract, but in the real world of day-to-day care for tiny vulnerable lives. When we introduce the patient's family to the world of social services, we can help make good things come to pass, but we cannot insure that good things will come to pass. Families have rich and varied biographies. For- tunes rise and fall. Children do or do not all get along with each other. Mothers may or may not succeed in developing a strong bond with their dis- abled infants. Husbands and wives may or may not cleave to each other till death does them part. And the disabled infant . . . growing child . . . young adult . . . and adult are part of that evolution, that miracle of human growth. And, like all miracles, you cannot predict how this one will turn out. That word-"miracle" -is being worked very hard these days. It tends to be used with every new development in medical technology, regardless of the outcomes. Certainly there may be much that seems to be "miraculous" about infant intensive care technology, but the outcomes are also mixed. A New Category of Disability I mentioned that the infant mortality rate is coming down and that, as near as we could tell, most of the babies we are saving are healthy babies. But the picture is really not that simple. A number of the infants we are sav- ing are premature or arrive with a low birth weight or are immature in some aspect of their development and exhibit respiratory distress. They may be taken immediately to an infant intensive care unit, or transported to one, and put on a respirator. These babies are usually the ones that might not have survived their birth just a few years ago. Today they are alive. But they represent a new category of disabled child-a category created by technol- ogy. The alternative for such babies had once been death. The cost is very high, not only in dollars but in family stress as well. The child is denied the initial, vital attention of that mother. Opportunities for early bonding are gone. The entry of that child into the family is delayed . . . and, depending upon the circumstances, possibly delayed forever. 1 know others on the program today and tomorrow are going to speak more particularly to this example. But I want to underscore its significance: First, the respirator-dependent child is a creature of our new tech- nology and, in fact, needs additonal technology to relieve the state of dependency. This is no longer a unique problem for medicine. It is very useful, therefore, to take a close look at the problem of the respirator-dependent child in order to search out those con- cepts and approaches that may pcoduce workable solutions in other, similar situations. The way we handle this particular prob- lem may, in fact, be a kind of model for the way we might deal with many other disabilities that tax our human and material resources. Second, the problem of the respirator-dependent child concerns technology . . . but not exclusively. Fundamental to the handling of this problem, I believe, are the several principles promoting staff-family interplay. This is where technology leaves off and basic humanity takes over. Third, it provides us with a rather clear assessment of how ade- quate-or inadequate-our social services may be, not just for pa- tient care but for total family care as well. And, four/h, it is possible for us to begin some longitudinal studies of how these patients do, both in the hospital setting and in the home, what the costs are at each place, what the effects are of changes in technology, what the cost/price history is, and so on. Such an opportunity rarely appears in which all these four elements are present. So I am delighted to see you here, looking hard at the overall prob- lem of providing better care for disabled children and their families, and also focusing in on the specific example-or "model'`-of the care for the respirator-dependent child and the family. Again, let me thank each one of you for coming today, for contributing your time, knowledge, and experience-and your basic humanity-to this problem. In the long run, I think that the way we deal with problems like this reveals just what kind of a society we are. - - -- w PRESENTATIONS OF PROGRAMS FOR CARE OF VENTILATOR-DEPENDENT CHILDREN THE PENNSYLVANIA PROGRAM Robert G. Kettrick, M.D. Over the past decade we in the medical community have made tremen- dous technological progress in preserving the lives of the newborn. This au- dience, representing the health care industry, is largely responsible for pro- viding the medical environment that enables these children to live, although sometimes with disabilities and possible handicaps. This imperfect solution is of no less importance for the legislators, administrators, and executives present than for the doctors and nurses. You also represent our society and our system of values. These disabled children are the children of our society and in that sense they are your children. Today, in the United States, there are legitimate health care alternatives that are not available to these children and their families. You, as members of society and as contributors to the health care effort, need to insure that all reasonable alternatives of care are available. With respect to the case model of the ventilator-dependent child, my mes- sage to you is simply this: 1. In many instances we can take better care of children and adults outside of an acute-care facility. This better care can be provided in the home at less cost than that which institutional care seems to mandate. 2. In order to provide this other legitimate alternative-home care-we need to identify and correct those circumstances which prevent its implementation. Let me start to develop these points by sharing some of our experiences. Consider the child who has a total thoracic ectopia cordis. From a clinical standpoint, these children would not have survived. At least they never did before, but now three of these children are alive. Two are still dependent on mechanical ventilation. The first of these children remained in our hospital for just over three years with hospital charges exceeding $750,000. He then went home on mechanical ventilation, supplemental oxygen, and with a tracheostomy. During the succeeding two years at home he was eventually decannulated. During that time he commuted to a community special edu- cation program, and part-time nursing service was supplied through New Jersey's Supplemental Social Security Income/Disabled Children's Pro- gram. These were devastating times for this family, who had to struggle to provide care, work, and pursue further education. 11 Consider another type of patient-the premature infant. Ten years ago the infant of less than 1500 grams was likely to die. Six years ago my daugh- ter, a 1300 gram preemie, spent one month in a neonatal intensive care unit, one week in a transitional unit, and was sent home at 1900 grams. The times have changed; more and more premature infants weighing less than a thou- sand grams at birth are living. Some, however, live to develop bronchopul- monary dysplasia and in many cases chronic respiratory failure secondary to that bronchopulmonary dysplasia. Still another category of patient is represented by Chris, a child with a post-infectious demyelinating syndrome which left him ventilator- dependent. The family was educated in the techniques necessary to provide care at home and the child was discharged. Part-time nursing was provided through union insurance. At that time he had a portable, battery-operated ventilator, battery-operated suction, and a portable liquid oxygen unit. The community made resources available to take him to school and to provide for his education. When I talk about care at home as an alternative, I am talking about the routine use of advanced life support technology in the home, in a very real sense transplanting elements of the expensive intensive care environment to the home. Can it be done? Absolutely! Can it provide better health care for the child? Absolutely! As long as you select your patients and family prop- erly, and as long as you can find a way to pay for it. Etiology of Ventilator-Dependency Ventilator-dependent children fall into three categories. First, there are those with severe bronchopulmonary dysplasia, often with right ventricular hypertrophy. Originally, we accepted these patients from infant intensive care units all over the Delaware Valley. More recently, we have had to restrict our transfers to those from our owninfant intensive care unit. Their mean duration of hospitalization is 499 days, and the range is between 285 and 1,250 days. The second group are those children with neuromuscular disease. The children with severe infant botulism are particularly satisfying to work with. They all get better, but it may take 3 to 6 months to wean them from mech- anical ventilatory support. These are children with severe motor impairment whose cognitive potential generally is not affected. Eventually, all of these children have their care transferred to a home environment. However, ef- fecting that transfer is time-consuming as evidenced by their own mean duration of hospitalization-214 days. The third group of children consists of those with congenital anomalies directly associated with chronic respiratory failure and those anomalies whose management was associated with complications producing chronic respiratory failure; e.g. esophogeal stenosis, tricuspid atresia, and pulmo- nary atresia. For this group, corrective surgical procedures, growth, and development usually allow eventual independence from mechanical ventila- tory support. The mean duration of hospitalization for this group is 198 days. Because of limitations of skill and knowledge inherent to our "state-of- the-art" medical and surgical expertise, results are often supportive rather 12 than curative. We have achieved a patient population which would not have survived before the regionalization of medical services; part of the achieve- ment comes from efforts at the local care facility to stabilize and to trans- port the infant to tertiary care facilities. The intensive care environment, with its technological sophistication, its surveillance by nurses and physi- cians, and its rapid responsiveness to patients' needscontributes to chroni- city. Both public and private financial support have underwritten this medical effort and therefore have contributed to the survival of patients with chronic respiratory failure. Disposition There are a number of possible disposition alternatives for the child re- quiring long-term ventilatory support. First, the intensive care unit. It is ex- pensive- approximately $250,000 per year. It forces separation from the family. It exposes the child repeatedly to stressed personnel, stressed fami- lies, and gallows humor along with catastrophic deaths, bloody interven- tion, and group assault. It is a terrible place to grow up, but grow up these children do. Currently 9 of the 28 beds in our acute care facility are oc- cupied by children with chronic respiratory failure. There have been times when 16 of our 28 intensive care beds were occupied by such children. Yet, the chronic care facility or extended care facility for ventilator- dependent children doesn't exist. Why? Ventilator-dependent children are a relatively new problem, and many people don't want to believe the problem exists. Many see death as a more cost-effective alternative; many see death as a more humane alternative. Many are scared by the economics and the experience with dialysis. However, the reality is that this patient population does exist and will continue to exist. Extended care facilities may have to be developed. The acute care hospital intermediate unit is an essential step towards suc- cessful implementation of home care. The pediatric intensive care interme- diate unit of The Children's Hospital of Philadelphia has evolved into a community where ventilator-dependent children come to live while we begin to sort out their medical and social needs. The unit has adapted a plan for the support and protection of the ventilator-dependent infant. It recognizes that: 1. The responsibility of the medical community is to provide an envi- ronment that will support and protect the child from those phenom- ena that will adversely affect organ, system, child, and family growth and development. 2. The natural history of each of the diseases which produce chronic respiratory failure largely dictates the rapidity and/or possibility of wean. 3. The child belongs to the family. Medical paternalism is actively dis- couraged. We have a goal of an integrated family with a strong par- ental sense of responsibility for the care of their child. The environment for these children is very important. Efforts are directed towards providing a warm, humane, and stimulating environment. Non- invasive technology and treatment are stressed. For example, respiratory 13 status is assessed using impedence pneumograph, capnograph, trans- cutaneous oxygen analysis, and clinical presentation. Blood studies are drawn primarily to provide support for presumptive diagnoses, not for rou- tine screening. Drugs are administered enterally. Intramuscular injections are avoided since they are painfui, and their cumulative effects have been associated with muscle fibrosis and limitation of motion. We try to provide a normal rhythm to the day. After the lights are turned on in the morning, there is a pattern of bathing, tracheostomy care, dress- ing, feeding, and so forth. Lights are dimmed for naps and consultants are encouraged not to disturb these naps. Parents can be with the child at any time, and other family members are encouraged to visit and interact with the child. The hospital is home for these children, and the environment should reflect such an atmosphere as much as possible. The transfer of an infant to a unit for chronic ventilatory support can pro- duce significant stress for the family. The caregivers whom the family have grown to know and trust are left behind. An uncomfortable realization that there is to be no cure is reinforced emphatically by the other children and their technologic chains. There are concerns about finances. Helping the parents through this period and eventually developing a strong alliance with them is part of our goal. Our efforts are directed towards: 1) a mutual trust established through clear communication, consistency, honesty, and provision of a non- threatening environment; 2) incorporation of the family into the care plan. Short-and long-term goals are reviewed, explained, discussed, and adjusted to meet the needs of the parents; 3) establishing the parents as effective, confident caregivers and advocates of their child; 4) when appropriate, transfer of the child's care to a home environment. Parent-infant bonding is essential. What we often see are parents who are afraid to touch or hold their child. We intervene and set the example by touching the child, stroking the child, and encouraging them to do so. We appreciate that the parents have gone through the first stage of bonding when they feel comfortable enough to go to the crib, drop the side, and independently gain access to the child. Then we move on to encouraging those aspects of care which represent caretaking: providing clothes, activity of daily living, caretaking tasks, comforting, and meeting special health needs. We then encourage and reinforce the parents' identifying the child as their own and as their responsibility. This process might be called desen- sitization, or bonding, or behavior modification. It might also be looked at simply as education with interim goals and the need to meet certain criteria before moving from one level of education to another. Indeed, these fami- lies do move through basic child care, sensory motor stimulation, nutri- tional care, daily respiratory care, and equipment management. Invariably, the parents reach a point where they feel that they are just as capable of taking care of their child as the doctors and nurses. While they were evolving to that point, they saw other children go home with supple- mental oxygen or tracheostomy, or mechanical ventilation. They see chil- dren and families coming and going for out-patient visits and sometimes just for socializing. Eventually their sense of self-confidence and peer pres- sure brings them to ask the question, "Can we take our child home?" The answer is, "That's a substantial commitment-let's sit down together and 14 review it and see if it's the best thing to do." We do that, and invariably for the parent who asked this question, it is the best thing to do. We examine various aspects to determine whether it's appropriate for the child to go home. Inability to wean is considered. This might just as well be inability to be independent, or hyperalimentation, or inability to be inde- pendent of intravenous antibiotics, or inability to be independent of di- alysis. We look for patient stability. We look for an involved family unit. We look for an appropriate home environment. In our experience, this envi- ronment might be on the main line, a trailer park, a farm, or an apartment. Generally, the physical plant that is appropriate for the family is acceptable for the ventilator-dependent child. An important consideration relates to the electric capacity which must be adequate so that the ventilator and suc- tion will work if someone decides to use the toaster. We look for two skilled caregivers. For this we use a checklist with some 30 differents points of skill and knowledge that the family needs. We look to see if service and supplies are readily available in their community. These needs have not been prob- lem areas in Pennsylvania or New Jersey. Finally we look for money. Financing Home Care Consider the family who has a major medical coverage with INA, Aetna, or Prudential. The policy rarely pays for extended nursing care in the home. However, we can call them and explain that the child has respiratory failure which requires hospitalization. In addition, we point out that the child's family has major medical coverage so that the annual cash flow is sub- stantial. We then outline to the company how they can reduce their annual cash flow by about 75 percent. Happily, we have not been disappointed. In all cases they have elected to capitalize the equipment needs for home care and to underwrite nursing for these children. We had another child who was insured with the Carpenter's Union. His benefits did not extend to home care. We explained this to the regional rep- resentatives who referred us to the board of directors. We sat before the board of directors and explained the child's needs and the cash flow prob- lems. The board of directors felt that they could not make an exception for any one child, so they voted to change the policy and make it retroactive so that this particular child and all others could be covered. Contrast that with this response that 1 received from a Health Mainte- nance Organization when I asked for financial help to undewrite home care. "The child is already through our $100,000 corridor and now she is covered by our re-insurance carrier. We wouldn't dare send her home and risk hav- ing her re-admitted. If we did that, we would have to pick up the corridor again. Keep her in the hospital. It's paid for." The question of what was best for the child wasn't to be discussed, but we did discuss it further with the involved parties and were eventually able to effect a solution which al- lowed for underwriting of home care. The response from Blue Cross is variable. In Pennsylvania, the important precedents have been set and currently they will pay for the equipment and partial nursing support. CHAMPUS has evolved, and an important precedent has been set. Recall the child with the total thoracic ectopic cordis. More recently, an Air Force dependent was discharged home with mechanical ventilation. All equip- 15 ment, including backup equipment, was funded through CHAMPUS, as was sufficient nursing to allow parents respite and the opportunity to keep their jobs. It wasn't easy for the parents-they worked alternating shifts- but they did have their son home with them after 3 years of hospitalization. Within 4 months the child was weaned, and 3 months thereafter he was de- cannulated. Until recently we couldn't budge the medical assistance system. They would pay hospital costs, often up to $210,000-220,000 a year per patient, but they would not provide nursing support for care at home. However, im- portant precedents are now being set. Secretary of Health and Human Serv- ices Richard Schweiker has set up a Federal review board so that these cases can receive individual review and he recently allowed for waiver of rules so that Medicaid money can be used for at-home care. Just four weeks ago, Governor Kean of New Jersey came to The Children's Hospital of Philadel- phia to send off the first such patient to New Jersey. Several years ago, the Commonwealth of Pennsylvania, through the leader- ship of Representative Mary Ann Arty, and Governor and Mrs. Thomburgh, made monies available for a pilot program for home care of ventilator- dependent children. The program provides for disbursement of Common- wealth of Pennsylvania Department of Health and Welfare funds to meet the legislative intent of Appropriation Act 17A of 1980. Through the terms of this Act the Commonwealth contracted with a private corporation to develop a program to allocate State funds for services, equipment, and supplies for care at home of ventilator-dependent children. This public-private experiment has been cost-effective, has facilitated hospital discharge for ventilator-dependent children, and has increased the availability of community support services. The program now supports 25 children and their families in their homes. However, there are over 200 more patients in acute care environments in Pennsylvania who might benefit from this kind of program-with enor- mous savings to the third-party payment system. Providing home care for ventilator-dependent children does not necessar- ily require more dollars. Indeed, we can extend our resources by defining less expensive and equally effective alternatives to hospital care and by rede- signing the reimbursement process to meet patient needs to allow for pay- ment of the less expensive alternatives. In the model problem of the ventil- ator-dependent child, care can be better at home. There are clearly fewer infections, development progresses more rapidly, and where weaning is pos- sible, it occurs more rapidly. In addition, care is less costly for this group at home. Our system of health care delivery has effected a growth in the numbers of disabled infants, children, and adults. Among these disabled, ventilator- dependent children have been denied access to reasonable alternatives of care because of misperceptions about the complexities of their needs and be- cause the system has not adjusted to meet the needs of that which it has produced. Our experience in Pennsylvania indicates that care at home in particular is a reasonable alternative for ventilator-dependent children. This alterna- tive has not been available to all families who might benefit from it. We need to learn how to make it uniformly available and of high quality. 16 THE NEW YORK EXPERIENCE Mathew H. M. Lee, M.D. Goldwater Memorial Hospital is a 912-bed facility specializing in long- term rehabilitation and treatment of chronic illness. As part of the Health and Hospitals Corporation of the City of New York, the hospital maintains a longstanding affiliation with New York University Medical Center. The long-term rehabilitation effort focuses on the team approach to patient care along with the individual's discharge potential; that is, discharge of each pa- tient as a viable, productive, and self-supporting member of society, living outside of the institution in the general community. We have recently conducted a study to explore the independent living problems of the severely handicapped respiratory patient as related to his personal adjustment, health care, and economic survival.* The objectives of the study were as follows: 1. To assess medical and social resources available to the severely disabled respiratory patient living independently in the com- munity. 2. To evaluate the cost effectiveness of these resources. 3. To develop a comprehensive rehabilitation service plan which includes medical treatment, public health nursing, pulmonary testing on a routine basis, and maintenance of life-support equipment and motorized wheelchairs. 4. To assess the need for other types of clinical care including oc- cupational therapy, physical therapy, speech and audiology, psychological therapy, and vocational counseling. 5. To assess vocational potentials and training of these patients as a function of their medical condition and functional mobility. The following table demonstrates that home care of the ventilator- dependent child should be thought of as a continuing process which can proceed into adulthood. One-third of the patients studied have lived at home for more than 10 years. YEARS LIVING IN COMMUNITY AFTER ONSE T/DIA GNOSIS N % Less than 2 years 2 - 5 years 5 - 10 years 10 - 15 years Greater than 15 years N/A 19 22.1 10 11.6 18 20.9 2 2.4 86 100.0 17 The next table shows distribution of the vital capacities of the patients in our survey. PERCENT VITAL CAPACITY N % 0 - 10% 12 14.0 10 - 20% 18 20.9 20 - 30% 14 16.3 30 - 40% 10 11.6 40-50% 9 10.5 Over 50% 22 26.7 85 100.0 You will note that some people in the study (34.9%) have vital capacities reduced below 20% of their normal predicted volumes, and that a total of 63 people (73.2%) were below 50% of their predicted vital capacity. In past years, people with this degree of pulmonary compromise died from carbon dioxide retention and subsequent cardiopulmonary arrest, usually precipi- tated by pneumonia or other respiratory infections. The twenty-two (26.7%) patients falling into the over 50% vital capacity category may not experience respiratory distress under usual circumstances. However, during a cold or intercurrent infection, they require ventilatory support to exercise their lungs and help mobilize secretions. Often they can- not expel thick secretions and require medical treatment with antibiotics and expectorants, along with judicious physical therapy of the chest (pulmonary toilet) during an illness. All of these clients are at risk when faced with a res- piratory infection and require prompt and experienced medical intervention. Ideally, professional rehabilitation services allow the patient to move toward independence at his own rate. In this ideal, support and guidance are fostered, while the individual encounters and overcomes the problems of a new lifestyle. This support can be diminished progressively as the indi- vidual reassumes the ability to make a choice and carry out his needs. How- ever, there is a definite existential difference between these elements of human potential and actual access to knowledgeable medical care and supportive services. These services are the sine qua non for conditions favorable to community life and subsequent employment. During the course of this study, lengthy discussions with patients strongly suggested that they do not want to exhaust the financial supports offered by society. These individuals do not consciously choose physical immobility and dependency. They desire to regain control of their own lives. Urban planners and health planners alike are aware of the existence of disabled people, and gains have been made in many areas. Patients acknowledge re- forms, yet the fact remains that the day-to-day experiences of living in a wheelchair are still frustrating. Simple survival in a world not ready to re- ceive quadriplegics is a continuing struggle. 18 In this regard, we at Goldwater Memorial Hospital are planning to meet the medical health maintenance needs of patients by establishing an Inde- pendent Living Center. Goldwater Memorial Hospital's specialized and unique respiratory care services are available currently to hospital inpatients and a large number of community-based residents. The Center will assist the patient in maintaining his community residence by the provision of individ- ually selected service support. Observation of the lifestyles of members of the severely handicapped com- munity serve to expand our conception of human potential. Comprehensive rehabilitation efforts, along with re-education, allow us to recast an image of an immobile, dependent human being, to that of an active, autonomous, reflective being, despite severe physical and functional limitations. Medical and health practitioners must give increased attention to implementing the consistent support needed to help the patient achieve this goal. When ap- propriate support is available, the patient has the capacity and the need to assume responsibility for his own existence. In many cases medical and in- stitutional expenses have been reduced following the comprehensive reha- bilitation and educational training of motivated patients. The cost effective nature of rehabilitation is not to be underestimated. *This study was supported by a grant from the New York State Office of Vocational Reha- bilitation. Copies of the report of this study can be obtained by contacting our hospital. 19 THE ILLINOIS PLAN I. Program Perspective Allen I. Goldberg, M.D. The Illinois program for the home and community care of ventilator- dependent children will be presented from three perspectives. 1 will first describe the advantages which we have found in moving the children from acute bed treatment at Children's Memorial Hospital to the far less expen- sive and more satisfying care at home. I will also define some of the prob- lems the program has encountered and ways in which we have attempted to cope. Then Mr. Eugene Bilotti, Administrator of the Programs, will describe how services are delivered and reimbursed. Finally, Dr. Arthur Kohrman will discuss our efforts at regionalization. Our experience at Children's Memorial has had and continues to have its difficult periods. Perseverance by our staff and by the families of the children in the demonstration project has resulted in satisfaction in many ways for those who have been transferred successfully to home care. First, the program saves money. The cost of hospital acute or inter- mediate care has risen by 84 percent in the past five years, from about $400 per day to about $1000 per day for acute care and to about $750 per day for intermediate care. The cost for care at home has remained at about $250 per day initially after transfer and in time drops to under $200 per day. Examples of the above follow: I Patient D. W.-Age at discharge-3 years 4 months Discharge Date: 9/10/79 Condirion: Pa&fly ventilator-dependent o 1 hour "free time" 0 35% O2 support Hospital Care Costs Home Care Costs March 1, 1979 - August 31, 1979 January 1, 1981 - June 30, 1981 184 days (6 months) 181 days (6 months) Intensive Care % 67,550 Pharmacy 990 Radiology 260 Laboratory 1.760 Central Supply 1,490 Respiratory Therapy 65.190 Physical Therapy 2,450 Cardiology 30 Take home drugs 20 Non-covered charges 260 Total $140,000 $140,000 = $23,33O/month 6 months Nursing 16 31,680 Central Medical Supply 460 Life Care 1,560 CMH 2,930 AAMED 4,390 Barton Research 870 Marie Lynch 180 Total % 42,070 $ 42,070 = $7,OtO/month 6 months $42,070 = $230/day 184 days $140.000 = $760/day 184 days 20 II Patient H. S.-Age at discharge-l year Condition: Totally ventilator-dependent o ventilator at night o diaphragmatic pacers during day o no oxygen required Hospital vs. Home Care Costs 6 Month Cost Comparison Private Insurance-Midwest Discharge Date: 6/l/81 Hospital Costs Home Care Costs 1981 1981 $189,250/182 days $45,630/184 days Total $ 1,040 $ 250 per day % 31,540 $ 7,610 per month 76% Decrease Secondly, our program has demonstrated recognizable values in having these children grow up in a more normal and human environment. Their personalities broaden; they interact with their parents and siblings; they at- tend school; and they can participate in their religion. Some improve to the point of no longer requiring support. By 1980, it had become apparent that the application of advanced medical knowledge and sophisticated technology by organized teams of health care professionals was saving an ever-enlarging number of disable children need- ing a variety of solutions and services not readily available. Demonstration projects of home care were not enough. Some children needed other options for social, educational, and future vocational reasons. Study led to the calling of a Conference on the Chicago Program, in October, 1981, to understand better and to define the present situation and to plan for the future. At the Conference, we asked, "Whatever Happened to the Polio Patients?"' Why 0 0 0 polio? There are three reasons: First, the modern medical disciplines of critical care and rehabilitation medicine have evolved from the organizational and technological advances made in response to the worldwide crisis created by polio. Second, the resulting excellent health care has created a new and en- larging population of survivors of many diseases and conditions who depend upon life-supportive technology. Finally, these new survivors face many problems and have a diversity of unmet needs similar to those of the polio patient of the 1950s. What is the situation now regarding the ventilator-dependent child? ' The proceedings of the Conference are available from the Rehabilitation Institute of Chicago, Dr. Don Olson, Director, Education and Training, Northwestern University Medical School, Rehabilitation Institute of Chicago, 345 E. Superior St., Chicago, IL 60611. Tel: (312) 649-6179 or Eli Henig, Rehabilitation Institute of Chicago. Tel: (312) 649-6190. 21 The Health-Care Perspective Regional acute care centers utilize valuable technological and professional resources for months and even years at an enormous cost. Facing decreased Federal, State, and insurance cost-reimbursement, they must limit their fa- cilities' capacity to serve acute care patients. Regional rehabilitation and long-term care institutions have available or adaptable resources to meet many of the needs of these children on ventilators. They could provide cost-effective, appropriate care if they had adequate pre- paration to do so. At present, these institutions do not accept these children. Such institutions also face economic constraints and need new directions for their missions. The Consumer Perspective The needs of a ventilator-dependent child disrupt family unity and tax all the strengths of a marriage. Both health care consumer (patient and family) and thephysician in fhe communify face inappropriate utilization of institu- tional resources because of a lack of information, education, and/or an or- ganizational approach. Consumers have the potential to help find the solu- tions to these problems if given the opportunity. Instead, the excessive costs of acute-care domiciling are indirectly added to everyone's burden as taxes and insurance premium costs. The Organizational Perspective Health Care Service Providers are finding an increased demand for their services and products, but mechanisms for reimbursement do not meet the diversity of services they can provide and the cash-flow they require for oper- ation. They seek guidelines for meeting a standard of care and mechanisms of coordination and communication with health care facilities, third-party payment agencies, and insurance companies. Public and Private Funding Sources recognize that alternatives to institu- tionalization can save money on a case-by-case basis. There is some uncer- tainty about the total cost-savings once a more workable and universal sys- tem of reimbursement is in place. In some cases, fragmented funding for human services can be combined for a total cost-savings. Funding sources recognize that there presently exists no standard of home care, no operating procedure, and no established case management/case monitoring system. Furthermore, there is concern about the appropriateness of treatment by medical providers. For example, the Blue Cross Association has recently en- acted "Medical Necessity Programs," such as one for Respiratory Care, which is a responsible, well-planned approach to reduce unnecessary costs for non-essential services. Voluntary Service Organization and Non-Profit Health Care Agencies have excessive demands upon limited resources. They need education and information to adapt to meeting new needs and guidelines to determine services. 22 Other Organizafionaf Possibfilities: Many organizations that care about people (religious service organizations, and community-based voluntary groups such as Rotary, Lions, Kiwanis, Elks, and Shriners) have "grass-root" resources. Many search for new directions. They can help provide local sup- port for intact families or alternatives to the family. Today excessive health care costs have nearly exceeded our ability to pay. Unless we design opera- tional systems and reimbursement mechanisms, we face the danger of curtail- ment of services and a resultant decline in the quality of life, or even survival, for some disabled people. Our past demonstrations and those of others abroad have proven that a higher quality of care can be more appropriately given with the family or in the community at enormous cost-saving. We can provide better care for less money. The solution of the problems of the ven- tilator-dependent child will have far reaching and universal benefits because of appropriate application to the many other complex health care and societal problems we face today. II. Home Health Care-Case Management Approach Eugene E. Bilotti, Administrator/SSI-Disabled Children's Program Years of singular growth and development had left health programming and social service agencies where it was hard to conceive of a plan that would place a severely medically involved youngster in his or her own home with $16,000 worth of sophisticated medical equipment and around-the- clock nursing services. Nevertheless, this is what the ventilator-dependent children brought to the scene. The Illinois Department of Public Aid had no official policy concerning such children. With each involvement, it had to establish an exceptional policy waiver. The Federal government was begin- ning to address the issue by a task force established to study and subsequently to make recommendations for the care of these children. Exceptions were also required by Crippled Children's programs as well as insurance carriers. The need for such a plan was obvious to all concerned parties. The most notable was that the child would be placed in the loving environment of his or her own home. A second was that there would be an immediate cost re- duction of approximately two-thirds of the cost for institutional care. The limitations of such programs were also obvious in the medical/safety and social areas. When planning for these children to go into their own homes, we needed to be aware that emergency medical support would be absent. Obviously, careful detailed planning was necessary in order to not threaten the child's life and/or safety. All the assets and liabilities being weighed, it was decided that we would attempt to place a child in his own home. We de- veloped a case management approach. It should also be noted that other children with similar needs, although perhaps not ventilator-dependent, would need to follow the same type of case mangement approach. 23 The following is the Illinois approach to home placement: I. Medical Plan Our Illinois approach begins with a very thorough medical protocol. This plan is detailed to the point of specifying every piece of equip- ment and a careful list of supplies. It also indicates who is to order the equipment, the designation of the primary physician, provisions for backup emergency care, a designated hospital to assume emet- gency responsibilities within the geographic area, an available res- piratory therapist to monitor the program, and a careful description of other professionals needed. 2. Case Management Plan A home case management plan is developed that clearly details and limits the persons and agencies involved. 3. Nursing Services Plan This plan includes a program for procuring the nurses, a plan for training and for determining an hourly rate of reimbursement. The nursing plan also details a projection aimed at reducing the number of nursing service hours from 24 to 16 hours a day and then to 8 hours a day, with the hope that the family will eventually be able to function without regular nursing service. 4. Financial Planning An exact financial plan is essential. Without a means of paying for the total program, all programming would abruptly end. The role of involved and legally responsible insurance carriers is determined. A plan is developed with the medical assistance unit of the Department of Public Aid defining their role and the amount of responsibility they will assume. The plan also includes a projection to reduce costs within six months to a year. 5. Family/Home Care Plan The suitability of the family situation needs exploration. It is gener- ally anticipated that a professional social worker will be needed at this point, for the family needs to understand the likely impact of this placement. The physical arrangements of the home need evalua- tion. There should be a suitable room for the child with proper heat, light, space, and an alternate power source. 6. Community Involvement Plan The overall plan details the involvement of the community. The local fire department, police department, and highway department need to be aware of the presence of a ventilator-dependent child. Ar- rangements also are made for local emergency medical services such as a local doctor, preferably a pediatrician, to tend to this child in emergency situations. 24 7. Equipment Plan An equipment list includes such items as backup suppliers, local pharmacy suppliers or providers, and ready information dealing with service or repair of the equipment. It is anticipated that backup equipment will be on hand. 8. Discharge Plan There is a detailed discharge plan that includes emergency alterna- tive plans, such as the local hospital that would tend to the child in an emergency and a contingency plan for return to the hospital from which the child was discharged. Although we feel that overall case management system in Illinois is not in its final form, we do feel that we have made strides in systematizing out ap- proach and in getting these children safely and successfully into their own homes. III. The Consortium Arthur Kohrman, M.D. The needs of the child with long-term dependence on high technology for continuing care must be met at several levels. The most effective means of providing services will be the bringing together of the various institutions and services within a given region. We are forming such a consortium in the Greater Chicago area with the support of the funding agencies of the State of Illinois, particularly the Division of Services for Crippled Children and the Department of Public Aid. Our initial efforts are focused on children with long-term or permanent needs for mechanical ventilation. We have begun a network of services and care which will ensure continuity, quality, and the greatest hope of the ap- propriate placement. It is anticipated that regional tertiary acute-care hospi- tals will continue to receive patients needing meticulous attention to airway, pulmonary, and cardiovascular care. It is hoped that a large percentage of children with long-term or permanent ventilatory care needs will ultimately be placed in home settings. Some can be discharged directly home from acute care units, but most will require intermediate-level facilities while caretakers in the alternative setting can be trained. For many, poverty and unstable homes make it impossible to construct adequate settings at home. We hope to train foster parents and set up new "families" for these children. An institutional consortium approach is now being organized consisting of Children's Memorial Hospital (the largest children's hospital in the re- gion), Wyler Children's Hospital (the acute care hospital of the University of Chicago, Department of Pediatrics), Michael Reese Hospital (also Uni- versity of Chicago, Department of Pediatrics) and LaRabida Children's 25 Hospital and Research Center (the chronic care hospital of the University of Chicago, Department of Pediatrics). Currently, home discharge teams (at Children's Memorial, Wylers, and Michael Reese) are preparing protocols to arrange for progressive preparation for discharge of chronic ventilator- dependent children, either to LaRabida or directly to home or other domi- ciliary setting now available in the Chicago area. LaRabida is planning to serve as an intermediate care setting. The capabilities of LaRabida are rap- idly being enlarged to handle ventilator-dependent patients. It is also antici- pated that LaRabida Children's Hospital and Research Center will develop significant programs of research and education around the very complex set of problems which these children present. It is clear that the maintenance of such a network is going to require ex- tensive ability to monitor patient flow and status, to produce and evaluate educational materials, programs, and protocols, and to bring together funding guarantors to establish the most effective and comprehensive pay- ment programs. Thus, the developing consortium, in addition to seeking consultation for preparing each of the member institutions to provide a uni- form standard of care and coordination of services, is also seeking assis- tance from an organization,2 external to the institutional members which will coordinate personnel, parent, and patient education; act as an informa- tion clearinghouse; maintain a flow of patient records and appropriate statistics; and act as the center for the coordination of payment sources. 2&w for Life is a not-for-profit organization providing services of documentation, educa- tion, and demonstration designed to meel these objectives and others that follow (documenta- tion center, community-based options for the disabled). 26 THE CHILD AT HOME Mrs. Bette Wartenberg My name is Bette Wartenberg. I am Donnie's mother. I am here to pre- sent the parents' view. I will describe the implications of a child's chronic illness on the family, the financial issues, and the complex problems en- countered by my family. In addition I will compare experiences reported by other parents in our parents' group. Donnie, my sixth child, was born with defects that involved the left side of his body including his left lung, which later on had to be removed. At the time of his birth we were told that Donnie had to undergo immediate sur- gery because of what is called an omphalocele, which means that his navel and stomach had evolved outside of his abdomen. Within 4 hours of birth he was transported from Joliet Hospital to Children's Memorial Hospital in Chicago, where the first stage of surgery was performed immediately. For us as parents, the first shock in the delivery room was knowing that our child had multiple birth defects. We were overpowered by fear of losing our child. Later, the fear was intensified by observing our child in the ICU, when his heart stopped 18 times and he had to be resuscitated. Only because of the prompt response from health care personnel, Donnie survived all this without brain damage. During his first 3 years in an acute intensive care unit, Donnie underwent a total of 20 operations. Most of the time he was breathing with the help of a machine-a ventilator-receiving numerous intravenous infusions and treatments while we were watching as helpless by-standers. We often did not understand what was done, the reason why, and we had no knowledge of the alternatives. Our main social contacts were other parents of critically ill children in the ICU waiting area who, over a period of months, became like close friends to us. Some were the unlucky ones; their children died. We grieved with them, always thinking that we could be next. After years of this, we shut ourselves off and avoided contacts with those parents-even to the point of being abrupt. We did not receive professional help to deal with the psychological stress we were under. My husband dealt with it by talking constantly about it, while I tried not to think or talk about it, which caused great problems be- tween us. We lost a lot of our friends. They did not know what to say, so it was easier for them not to see us. Besides, we were no fun to be with, be- cause we were constantly talking about our problem. During his years in the ICU, attempts were made to wean Donnie off the ventilator. A pediatrician forcefully suggested that we take Donnie home, that is, to die. We took Donnie home. He had a tracheostomy; that is, a hole in his trachea. He was breathing poorly by himself; we thought he would not live much longer. We were not prepared to properly take care of him at home. We did not even know how to regulate the oxygen flow. He was home for two months, only to return to the Children's Memorial ICU because of pneumonia and failure to thrive. By then, we had lived through two months of a nightmare with no help, no medical caregivers, no sleep-only worry. We were exhausted and burned out. 27 We shared this experience years later with other parents who at the time were sent home unprepared, with a child who could not breathe by himself without a mechanical aid. This couple had ventilated their child by hand 24 hours a day, taking turns day and night for months, until the decision was made that the child needed a mechanical ventilator at home. Our home is in Joliet, Illinois, 60 miles from Children's Memorial Hospital in Chicago. Rather than spending 2 to 4 hours on the road a day, we chose to move into the waiting rooms at Children's Memorial Hospital, where we lived for over a year. We slept on the couch, showered in the base- ment locker rooms, ate hospital food, and paid parking fees. Our 5 children, ranging in age from 17 to 12 years, were left unattended most of the time. They learned to take care of themselves. After about a year, my husband and I decided that one of us had to stay at home in Joliet because our other children were beginning to feel the effects of our absence. I went to Joliet, returning to the hospital occasionally, and my husband stayed with Donnie. Consequently, he lost his business and to live we had to bor- row money from family members. Besides dealing with this stress, there was no money or time to go on vacations with the other children. We haven't had a family vacation for 10 years! Our insurance covered $100,000 of Donnie's care. After a few months, we were told to apply for financial assistance to Illinois Public Aid and the Division of Services for Crippled Children. Children's Memorial Hospital was very helpful in helping us apply. We qualified because Donnie was born with multiple deformities. 1 Why is it much easier to get aid if a child is born with defects than if some illness or accident causes defects at a later date? Others in our parent-group had children who had problems getting financial help. One parent was called into the hospital billing department and was presented with an astronomical hospital bill and was asked "How are you going to pay for this?" Some parents were advised to go on unemployment, go on public aid, and even get a divorce. After spending the better part of 3 % years in an Acute ICU, Donnie was transferred into an intermediate care unit for his long-term care. Repeated attempts to wean him from his breathing machine caused him to be lethargic, puffy, and turn blue. He ceased to grow. The only time he was well was when he was on his ventilator. Then he became a very active, happy child. His many arrests had apparently not damaged his brain. He had become a very precocious child, even inventing his own sign language! Even though we were at his bedside as much as possible, many of the functions of a parent were taken over by nurses and other health caretakers. Correcting bad behavior or eating habits is hard to accomplish outside of a family setting. Since Donnie was confined to this unit by being on the ventilator, he lacked opportunity for an education appropriate for a 4 year old. At this time he got i/2 hour of tutoring a day. Children's Memorial Hospital, being an acute care hospital, was unable to provide additional education for a chronically disabled child. Then in 1978 a new idea was presented to us by a new staff physician. Give Donnie optimal ventilation so he can grow. Prepare him to go home safely with his ventilator. With our memories of the past experience, the 28 idea horrified us. But after meeting with qualified medical personnel, we were assured that we would be trained and would have medical help to sup- port us. Donnie needed to go home in order not to become socially handi- capped. Once while I was talking to him on the phone, I told him I was sit- ting at the kitchen table. After he hung up, he asked his nurse "What is a kitchen table?" My other children were delighted when we told them that Donnie could come home, and they were anxiously awaiting his arrival. In 1978 no money was allocated by Federal or State law to care for ventilator-dependent children at home. The State knew how to pay the high costs of intensive care but had no experience in providing funding for less expensive care at home. A long period of negotiation took place. The State officials finally found the solution to pay 100% for 2/3 less expensive medical care at home. We were luckier than others in the parents' group who were faced with the spend-down money (money to be paid according to income by the family to the State). Some parents in our group had private insurance. The insurance com- pany refused to change their reimbursement policy for home care. The in- surance company was willing to pay everything in hospital, but refused pay- ment for home care. As a result, the insurance company rapidly spent the $500,000 in the hospital. This money could have lasted for years at home. They had no incentive to change. Therefore, public funds were needed sooner, because the private insurance money was gone so quickly while the patient remained in the ICU. So the burden was tranferred to the State and ultimately to the taxpayer. Transition It took nine months from the time the decision was made to send Donnie home before it really happened. During that time we built a specially adapted addition to our house. Regular meetings with the health care team were held. These meetings clearly defined goals acceptable to all, and pro- vided clear objectives and specific plans for action. Each team member had accountability. The home discharge team included the dedicated clinical staff who had cared for Donnie over the years. The coordinator was his nurse; the educator was his respiratory therapist. Both were caregivers who had received him in the ICU shortly after his birth. The team also involved physical and child-life therapists, special service staff, social workers, etc. Initially, several members had to overcome their own fear and negative thinking, but the more educated they became, the more they were able to overcome this barrier. My husband and I were trained to handle Donnie's ventilator equipment by both classroom teaching and "hands-on" experience. We passed a test and were certified. Nurses we recruited, selected, and hired to provide 24-hour home care were trained with us at the hospital, in the classroom, and at the bedside. Community support services, including a primary physi- cian and emergency room staff in Joliet, were well-informed about their responsibility prior to their consent. Nursing, physical therapy, and respiratory therapy plans and exact procedures were clearly written, and local suppliers of medical equipment were found, motivated, and well- 29 prepared. Funding was finally approved because of highly motivated and responsible actions of the leaders and staff of the Division of Services for Crippled Children, the Illinois Department of Public Health and SSI Disabled Children's Program. The team work of all these individuals made the home program a reality. Home On September 10, 1979, our son came home to stay. It has been a difficult task. We are dealing with a lack of privacy, the ventilator breaking down, lack of service for equipment, and difficulties in getting medical supplies. However, the benefits of having Donnie at home far outweigh the difficulties. We are now a normal family, maybe different in some ways, but we are all together, sharing all the experiences of life. We no longer divide our time among our children. Donnie's health has improved; he has grown several inches. His oxygen need has decreased. His social life is no longer limited to the ICU where he never knew the difference between day and night. He is now getting an education, doing average-to-above-average work. He no longer has to regard cardiac arrests in the bed next to him as his only occa- sion for "social-get-together." Instead he goes to weddings; he was a ring bearer at his brother's wedding where he never missed a dance. Donnie is a joy to be with. He loves his religion. He celebrated his Holy Communion last month. He tolerates being off the ventilator with oxygen longer. He races his race car (recently he placed first in competition), climbs trees, and he even fell and broke his arm at a birthday party. Donnie worries right now whether he will get married one day. He is concerned that it is not much fun to go trick or treating, because no matter how he dresses up, everybody recognizes him by his tracheostomy. His nightly prayer includes: "Dear God, if you are listening, please get rid of my trach so I can play football." We know we can go back to Children's Memorial Hospital any time we have any problems with Donnie. He will be well taken care of by loving people who know him and care for him and us. We are deeply grateful to the staff of Children's Memorial Hospital. They never gave up hope. And thank God nobody pulled the plug in the ICU. Thank you. 30 WORK GROUP RECOMMENDATIONS INTRODUCTION TO WORK GROUPS When The Voices of Children Are Heard On The Green And Laughter Is Heard On The Hill, My Heart Is At Rest Within My Breast And Everything Else Is Still. William Blake All of those participating in the Workshop have made a commitment to improving the quality of life for children with handicapping conditions and their families. In sharing this common goal, they shared a common strug- gle-a struggle that is bounded by our limits in knowledge, technology, and resources. It is a struggle that taps boundless human compassion and tests every bit of creativity. The task of the work groups was to challenge each limit and to invoke all of our talents to solve the urgent problem of extend- ing humanistic and comprehensive care to all handicapped children and their families. They were a diverse group with a diverse perspective: parents, profes- sionals from many disciplines, public and private service providers, financers, and policymakers. The interaction of their combined perspectives has the potential for generating unique strategies and solutions that can serve to shape a nationwide effort. As a case example, the ventilator- dependent children provide a rich opportunity to go forward with in- novative strategies that can affect all handicapped children and their families. For a day and a half, ten working groups examined two key areas of con- cern: organizational and financial considerations. In each area a broad range of issues was addressed by the groups. Organizational considerations included the scope of approach to delivery of essential services, institutional roles and limitations, and public and private organizational roles and limitations. The groups examined the means of overcoming deterrents to care in the community, of promoting family autonomy, of setting standards for quality assurance, and of defining educational and research needs. Financial considerations included approaches to reimbursement for ventilator-dependent children, reimbursement for community-based care and for tertiary and intermediate institutional care, cash-flow dynamics, multiple sources of funding for comprehensive care, and research in financ- ing services. Each group also examined existing processes and mechanisms-their ad- vantages and limitations, the deterrents to improvement, and strategies for the evolution of family and community management of care for these children. The groups presented their recommendations to Drs. MacQueen and Ket- trick who synthesized these and identified common themes to present to the Surgeon General at the close of this Workshop. 31 RECOMMENDATIONS The participants in the workshops were assigned to ten working groups of approximately fifteen persons each. Each group was assigned specific, re- lated sets of issues to examine in depth. The groups were to define existing processes and mechanisms, their advantages and limitations, and the deter- rents to improvement. They were also asked to develop strategies for the evolution of family and community management of the care of ventilator- dependent children. The work groups looked at what was working in the system, defined numerous needs and problems and deterrents, and suggested strategies for improvement. The diversity of perspectives, the flow of ideas, and various tangents of the interactions present in the work groups cannot be covered adequately in this document, but some of the more pressing programs, needs, and strategies are distilled and categorized here. For the purpose of providing a framework for presentation, ten categories have been defined. The deliberations are reported under these headings: 1. Data 2. lnstitutional Matters 3. Family Considerations 4. Regionalization 5. Standards for Quality Assurance 6. Abuse and Overutilization 7. Professional Education 8. Family Education and Public Awareness 9. Research 10. Finance and Reimbursement Most of the topics cut across the lines into more than one of the above categories, so that reference may have to be made to more than one section in order to find all the suggested strategies for any given topic. CATEGORY 1: DATA There is a need for accumulation, dissemination, and utilization of data. DEFINITION OF THE ISSUE AND ITS EFFECTS: If we had adequate epidemologic and demographic information we would be better prepared to develop programs for the care of ventilator- dependent children. On a case-by-case basis we have figures which demonstrate significant dollar savings for home or community care, when contrasted with in- hospital tertiary care, but these numbers need to be refined and monitored. Because such a limited number of programs for home care are now func- tioning, we have not been able to accumulate data for the "ripple" which the move of large numbers of ventilator-dependent children from tertiary units might have on the financial structure of the medical system as a whole. 32 SUGGESTED STRATEGIES 1. Convene a working group to define, within a time frame, the needed information. The group should have representation of economists, statisticians, and health care providers. 2. Implement a continuing data collection and information system. 3 Disseminate the collected information to organizations and reim- bursing agencies which can apply it to improving care and financing. 4. Conduct epidemological studies to follow the natural history of dis- eases which leave children ventilator-dependent. 5. Conduct a survey to determine the current patient care and reim- bursement status in each of the States. 6. Conduct cost-effectiveness studies to assess the quality and costs of care in various settings. CATEGORY 2: INSTITUTIONAL MATTERS Multi-tiered institutional models should be adopted to provide cure for ventilator-dependent children. There are 3 major groups: acute care facilities, transitional units, and non-institutional alternatives. DEFINITION OF THE ISSUE AND ITS EFFECT Acute care facilities should be reserved for care from the onset of medical crisis until stabilization. Transfer should then be effected to a transition, in- termediate, or rehabilitation unit to prepare for long-term placement. Very few such transitional centers are now available for ventilator-dependent children. As a result, many children remain domiciled on expensive acute care units for far longer than is medically necessary. There have been seri- ous barriers impeding transfer to home. There are almost no facilities for non-institutional living for those ventilator-dependent children for whom the biological home is not a viable alternative. Eventual placement in a home or home-like community-based living arrangement should be the goal for these children. SUGGESTED STRATEGIES 1. Promote the development of transitional units, such as intermediate care centers or rehabilitation facilities that are pediatrically oriented. 2. Devise non-institutional, home-like living arrangements, such as group-living with shared services, foster homes, or subsidized adop- tion. 3. Work to remove the social and economic deterrents and barriers which prevent transfer to care at home. 4. Develop precise clinical and social criteria for transfer from one level of care to another. 5. Provide financial aid for tertiary units to allow them a major role in preparing patients and families for transition. 33 6. Provide for study of European programs of group living arrange- ments, which have been in successful operation for a number of years. 7. Study the effects on tertiary care financing after the long-term, ven- tilator-dependent children are moved from the tertiary beds. 8. Develop regional affiliation among institutions at the various levels. Provide financial incentives for those institutions participating in such a consortium. CATEGORY 3: FAMILY CONSIDERATIONS Starting at the earliest acute stages, the family must be encouraged to de- velop a strong involvement in the care of the ventilator-dependent child. DEFINITION OF THE ISSUE AND ITS EFFECTS The family of the ventilator-dependent child is often overwhelmed by the process of coping with the acute phase of the child's illness. The family unit is disrupted by the persistent encroachment of a new way of life for which there has been no preparation. Because of this devastating strangeness, the parents can easily come to rely on well-intentioned "professional parental- ism" in their early decision making. As the patient stabilizes and becomes ready for an alternative to an acute unit, the family may have become too functionally paralyzed to participate in the process of considering such al- ternatives. After care at home has been inaugurated, continuing monitoring of family function must ensue. SUGGESTED STRATEGIES 1. Encourage an early "bonding" process for the family to come into intimate physical contact with their child as soon as it is comfortable for them to do so. 2. Have the family assume as complete a responsibility and authority as possible from the earliest stage in the illness. This should be done in consultation with health and social service professionals. 3. Develop tools to assess the family's readiness for each transitional step. 4. Make parent counseling, mental health assistance, and specific ther- apy available where indicated. 5. Aid in formation of parent support groups and a parents'network for exchange of information and feelings. 6. Hospital staff education should be directed towards sharing respon- sibility with the parents in whatever way is compatible with the best medical care for the patient. 7. Provide for respite assistance for the family with a child at home. 8. Assist in structural changes in the home which make it easier for the ventilator-dependent child to lead as normal a life as possible. 34 9. Enhance payment of outstanding vouchers promptly, so that the family does not have the added burden of unpaid bills. A system should be inaugurated with third-party payers for advance alloca- tion of reimbursement, so that the family can plan a reasonable fi- nancial budget with knowledge that monies are available when needed. CATEGORY 4: REGIONALIZATION All institutional, social, service, financial, and professionat functions on behalf of the ventilator-dependent child should have regional coordination. A regional system can be developed at State level, across State lines, or intra- state, and with tertiary care center participation. The strongest emphasis should be on the community-based component of the regional system. DEFINITION OF THE ISSUE AND ITS EFFECTS The ventilator-dependent child at home needs essential services. At pre- sent, there is no coordination of delivery of these services, nor are there uni- form methods of payment. There is, as one group put it, "no one in charge." A regional system for coordination of efforts can be developed within and among organizations which already exist, with each regional sys- tem responsible for defining and arranging each of its levels of service. SUGGESTED STRATEGIES 1. Grants from the Federal level should be provided for pilot projects to delineate implementation issues in developing the structure of a new regional system for delivery of care. 2. Encourage communication among all providers of medical and nursing care, education, social services, recreation, transportation, psychosocial support, emergency services, equipment vendors, and respite assistance at the community level. This will enhance the co- ordination of community assets into the regional system and allow for easy entry of the patient into these facilities when transferred from hospital-based care. 3. Funding must be found to develop regional systems beyond the ini- tial pilot projects. In time, the regional systems should become self- sustaining. 4. Public and private reimbursing agencies should participate in the development of the regional system. Such participation will allow for a more rapid solution of problems, with resultant savings. Those agencies which already exist for the family should be incorporated into the financial plan, whether Medicaid, Crippled Children's Services, Blue Cross/Blue Shield, or private insurers. 5. The coordinating center should accept responsibility for the patient's transition from one level of care to another. 35 6. The regional system should be developed with the objective of pro- viding coordination of all community resources for the humane care of the child in the least restrictive environment compatible with medical status. CATEGORY 5: STANDARDS FOR QUALITY ASSURANCE Standards should be developed and quality assurance controls should be built into both institutional and community-based programs. DEFINITION OF THE ISSUE AND ITS EFFECTS Standards should be written for the various levels of institutions and non- institution living arrangements, as they are being developed. Most impor- tantly, standards should be set for the essential services and personnel which are necessary to support the ventilator-dependent child in the home. Quality controls cannot be instituted until minimal standards for services are estab- lished. The family of the patient will be able to make better decisions on contracting for services when they have standards to guide them. SUGGESTED STRATEGIES 1. Professional organizations should be encouraged to work together to establish and promulgate needed standards of care. 2. Each system should provide a qualified home discharge team and should implement a post-discharge monitoring mechanism. 3. Standards should be established for medical criteria. CATEGORY 6: ABUSE AND OVERUTILIZATION There is a concern that abuse and inappropriate utilization will occur once systems are established for providing improved services for the ventila- tor-dependent child. DEFINITION OF THE ISSUE AND ITS EFFECTS Technology may be used inappropriately, and there may be inappropriate use of personnel and equipment. Patient populations may enter into the sys- tem by way of unwarranted discharges to home care or because patients now on mostly self-sustained home care may apply for entry into the system. SUGGESTED STRATEGIES 1. Establish safeguards against abuse and inappropriate utilization and provide for monitoring in the regional systems. 2. Establish standards and/or regulations to insure against cost ineffi- ciency for all services provided. 36 3. Insure charges for community based services (i.e., group homes) are realistic and monitored to prevent abuse. 4. Set up central purchasing of equipment with loan or rental to the appropriate patient population. 5. Inaugurate monitored competitive bidding for equipment and pro- vision of services. 6. Review past experiences of national programs requiring complex medical technology to identify problem areas and identify ways to avoid similar problems. CATEGORY 7: PROFESSIONAL EDUCATION Personnel delivering care at all levels must be adequately educated. DEFINITION OF THE ISSUE AND ITS EFFECTS Professionals often find it difficult to work with the disabled because of attitudinal problems. They must develop sufficient background associated with the problems of disability and the needs of the extended families very early in the course of their training. Training of professional personnel must take place at all professional levels of pre-service and in-service education to allow updating and familiarity with new techniques at all levels. Medical, nursing, and allied health schools, schools of health administration and economics, business schools, and biomedical engineering centers should be involved. Paraprofessional workers are an important part in the service delivery sys- tem and must similarly receive basic and appropriate continuing education. SUGGESTED STRATEGIES 1. Incorporate education for care of the disabled into the curricula of higher learning. 2. Inaugurate and supervise an education program for health workers as a major function of the tertiary centers in the regional system. 3. Develop a national clearinghouse to allow for access to resource material. 4. Sponsor continuing education courses aimed at professional and paraprofessional personnel. CATEGORY 8: FAMILY EDUCATION AND PUBLIC AWARENESS The public remains unaware of many of the problems of the disabled. Families of ventilator-dependent children need ongoing educational sup- port. Ventilator-dependent patients must be included in the educational mainstream when possible. 37 DEFINITION OF THE ISSUE AND ITS EFFECT Sl The public, and particularly the legislators, is unfamiliar with the needs of ventilator-dependent children. They are not aware of the beneficial ef- fects on our social structure when the disabled are transferred to a more normal, productive life in our communities. Parents need continuing educa- tion from the earliest stage of the child's disability through the transition which results in the ventilator-dependent child being cared for at home. The child's education becomes one of the most essential services in planning for care at home. SUGGESTED STRATEGIES 1. Groups should be formed to increase public awareness. 2. Government officials and third party payer executives at all levels should be made aware of the cost and humane benefits which result from a system of community care for the ventilator-dependent child. 3. Parents' groups should be formed to keep parents informed of their rights. 4. A national clearinghouse should be devised to provide parents with information about care and specific services for their children. There should be local community outlets for such a center. 5. Liaison should be developed with the community school system to allow for tutoring and entry, and, if possible, mainstreaming the child into the system. 6. Ongoing education experiences for the child and family must be provided by or arranged by the health providers. 7. Education of the child should be a part of the case management plan. CATEGORY 9: RESEARCH Basic research aimed at prevention of disability is of major importance. Research is needed also to define the problem more thoroughly and to in- vestigate and evaluate possible solutions. DEFINITION OF THE ISSUE AND ITS EFFECTS We have very few programs for the delivery of care to the ventilator- dependent child that extend beyond the acute care unit of the tertiary cen- ter. We have presented the case for the benefits of care at home. As pro- grams for these children evolve, careful research and evaluative studies must be conducted. ( fl n I: t t SUGGESTED STRATEGIES 1. Research should be undertaken in those factors which could im- prove the outcome of pregnancies. 2. Regional systems as they are developed should contain a research component. 3. Research on treatment interventions to measure outcomes should be undertaken. 4. Research is critical to measure cost effectiveness. There should be an immediate cost effectiveness study of the functioning programs in Pennsylvania, Illinois, and New York, with particular attention to the true dollar and social benefits of the various alternatives. 5. Research of other financial and reimbursement issues (e.g., prepay- ment plans) should be pursued. 6. Research should be undertaken to determine effective methods for education of professionals and for patient education. 7. Research is needed to establish qualifications necessary for person- nel to participate in the management of ventilator-dependent chil- dren in various settings in a r;gional system. 8. Research should be an integral part of any of the strategies imple- mented as a result of this Workshop. CATEGORY 10: FINANCING AND REIMBURSEMENT Financial and reimbursement considerations are the overriding deterrents to rhe care of ventifator-dependent children in the least restrictive, most hu- mane environments compatible with their medical needs. DEFINITION OF THE ISSUE AND ITS EFFECTS On a case-by-case basis, it has been demonstrated that considerable savings can be achieved by providing for the more satisfactory and humane care of ventilator-dependent children at home or in homelike alternatives in their communities. Unfortunately, our current private financial, insuring, and reimbursing systems did not evolve from a base designed for funding of care for children with chronic or long-term health problems. As the number of ventilator-dependent children increases, financing has to be restructured to deal with the new problems. The processes for paying expensive in-hospital acute care bills function fairly smoothly to certain limitations. On the other hand, the processes of funding community based care of ventilator- dependent children is uncoordinated, and in many situations, non-existent. When a child is successfully transferred home, reimbursement becomes very complicated. A multitude of essential services is provided by a great variety of agencies, individuals, and vendors. The bills from all these sources are accumulated by the reimbursing party and must, in most cases, be analyzed and paid individually. Time is lost; statements are paid late; billing errors are common; both creditors and reimbursers become frus- trated; and, as a result, the already difficult process of care at home be- comes more cumbersome. 39 The reimbursement and financial systems for long-term community care of ventilator-dependent children need restructuring for flexibility and modernization. SUGGESTED STRATEGIES 1. Work with major providers of third-party payment to improve re- imbursement schedules. 2. Encourage maximum coordinated participation by government and private reimbursement agencies and in regional systems. 3. Develop methodology for advance reimbursement to families of children on care at home. Allocations of a specified amount of money should be made prospectively to be used over a finite period of time. Incentives should be built into this system to control costs. 4. As a corollary of the above, a new method of managing vouchers from individual service suppliers should be developed. Up-front money or bank accounts should be provided to allow for prompt payment of bills. Retrospective reimbursement should be eliminated or, at least, minimized. 5. Methods should be developed for "pool" purchase of equipment where that is found to be medically appropriate and more cost- effective. 6. Title V should play a major role in planning, promoting, and devel- oping regionalized systems of care utilizing all available resources, rather than serving only as a third-party payer for small number of "eligible" children. 7. Financial counseling should be made available to the family. 8. Tax credits should be allowed for changes in the structure of the home which are necessitated by the child's disability. 9. The tax deductibility of medical expenses should be liberalized for families of patients on care at home. 10. Government requirements for "spend-down" should be minimized or eliminated. Il. Current policies and procedures for waiving Medicaid eligibility re- quirements should be kept in place. 12. Hospital cost containment processes should be encouraged and monitored to minimize the escalating cost to the system as a whole. 13. Coordination and management of services to children within a re- gional system of care should be recognized as essential; financing mechanisms should be developed. 14. Possibilities for arrangement of catastrophic illiness funding, disas- ter pools, or revolving accounts should be investigated. 15. The financial support system for ventilator-dependent children should be closely monitored and modified as necessary to prevent abuse. 16. All changes made in the financial support system for ventilator- dependent children should have as their underlying objective the at- tainment of the most humane care in the least restrictive environ- ment and at the lowest cost. 40 CHILDREN WITH OTHER I-KANDICAPS CHILDREN WITH DISABILITIES: IMPLICATIONS FOR CARE Alfred Healy, M.D. In November 198 1, President Reagan cited the case of Katie Beckett, a 3 year old child, as an example of government regulations gone awry. Medi- caid rules permitted payment for Katie's care in a highly intensive tertiary hospital but could not pay for care if Katie was taken home. President Reagan granted a waiver to permit payment for Katie's care at home. The highly visible case of Katie Beckett publicized a health care delivery system that was not geared toward providing the best of life-sustaining technology in what we, in the area of services to the handicapped, would call "the least restrictive environment." The goal of providing services in the least restrictive environment is basically a humanitarian one. However, what has been most publicized about the case of Katie Beckett and similar ones is that this least restrictive environment is also often, dramatically, the least expensive one in which to provide services. What can we learn about health care delivery for this population of ventilator-dependent children, and how do the issues relate to our provision of services for handicapped children as a whole? Are there common elements to assist us in understand- ing the needs of children with disabilities? First, we need to review both the children's health care system in general, and services to children with handicaps, as they exist in this country today, and then examine some of the factors that have influenced their develop- ment. Second, I would like to discuss a community-based evaluation and planning system for those children who have a high likelihood of living with restrictions on their functional lives-and to suggest methods we might use to reduce that likelihood. Children's health care in this country is changing. Every person, whether provider or consumer, who has the opportunity to observe the process of health care delivery, or to measure its outcomes, must be impressed with the way the system has changed and continues to change in a very positive man- ner. Signs of positive change can be seen in increases in life expectancy and tremendous reductions in morbidity. Mention only needs to be made of po- liomyelitis, erythroblastosis, and modern therapeutic approaches to child- hood malignancy to confirm the occurrence of these changes. Similarly, the status of children with disabilities in this country is chang- ing. Those working with the education, therapy, counseling, housing, em- ployment, or social needs of the handicapped-and with parents, neigh- bors, and friends of the disabled-are aware of the tremendous changes that have occurred in this field in the past two decades. Indicators of these changes include the early identification of those with disabilities and the re- moval of numerous barriers that interfere with opportunities for children with disabilities to become productive citizens. 41 Let's now review a few of the reasons why the health care system in gen- eral is evolving in this way. A number of trends have contributed to positive changes, including: 1. A significant increase in the availability of individual and personal- ized health care. The number of health care personnel has expanded and the fiscal and physical accessibility of health facilities has im- proved. 2. An increased personal involvement of patients and parents in as- suming responsibility for their own health care. This involvement resulted from improved patient education and involvement in the decision-making process regarding the type and location of the re- quired health service. 3. A recognition that services must be delivered or made available as close to the patient's home community as possible. 4. A realization that technical and human resources need to be tar- geted at patients with specific problems and that it is possible to measure accurately more subtle outcomes than mortality or gross morbidity. 5. An increased ability to move quickly from the research laboratory to clinical investigation followed by clinical application. What then are the specific factors that assisted the growth and improve- ment of programs for some of the disabled, and how did those forces evolve? 1. Care became individualized. There was a shift in thinking from "All Down Syndrome children are alike," to "All Down Syndrome chil- dren require a continuum of evaluation services to document their individual strengths and deficits." 2. The settings for providing required services were critically examined and, in many instances, found to restrict the development of social, intellectual, and functional life skills. As a consequence, consider- able numbers of children and adults moved from institutional set- tings and were placed in community-based residential homes and care facilities. 3. Parents and guardians became involved in decisions regarding their children's participation in educational programs and the provision of related services. 4. Patients and their parents or guardians were provided specific legal safeguards to ensure their participation in or knowledge of pro- grams through such legislation as PL 94-142, The Education for All Handicapped Children Act, and Section 504 of the Rehabilitation Act of 1973. 5. Statewide planning for coordination of services was mandated, and specific accountability was required of states to ensure the delivery of services. These changes were seen in PL 94-142 and in PL 95-602, The Developmental Disabilities Act, and in some aspects of the Health Block Grants. 42 6. Many programs were devised that implemented the interdisciplinary process, one that recognizes the need for a variety of professional expertise in the evaluation and care of disabled persons and that no one discipline has exclusive "rights" to a patient, irrespective of the problem or the "importance" of the discipline. How do these trends in the health care system and the service system for the disabled relate to the problem facing this conference? What can we learn that will assist all handicapped children-and conversely, what elements of the care system for the disabled child can be applied to the problem of the ventilator-dependent child? A cohort of children with respiratory conditions was identified that re- quired a specific technological advance- the creation of appropriate respi- ratory life support systems so these children could lead independent lives. But the creation of the technological hardware did not resolve the clinical problem. The remaining problem is to identify successfully the social, political, educational, attitudinal and financial steps which will allow the available hardware to be placed in the hands of those children who desperately require it, and do so in a coordinated manner that does not burden the patient or the parent with overwhelming financial responsibil- ities. We also must provide this ventilatory assistance in a way that will least interfere with the child's developmental process. When we have minimized financial burdens and developmental interference, our system can be said to be operational. Our service delivery goals for the approximately seven to eight million other children who are labeled as handicapped in this country are very similar. An important step in the achievement of these goals is the differentiation between a person who is disabled-one who has a condition or infirmity that interferes with life function-as opposed to a person with handicaps because either society or the person himself places barriers in the path of a functional life, barriers to living in "a least restrictive environment." Such barriers may be physical (the inability to enter a building in a wheel-chair because of a flight of stairs), discriminatory (the exclusion from qualified employment), or attitudinal (the lack of understanding of some health care financial underwriters that out-patient care may be less expensive and more useful in maintaining academic and social interests than in-hospital care). Katie Beckett requires a ventilator for a health impairment, but she also desperately requires an environment in which to learn how to play and to delight in gaining developmental skills along with her peers. She requires an environment that will provide exciting sensory stimuli so she has facts and data to develop concepts and ideas, and she needs the opportunity to prac- tice muscular skills so she may communicate with her world through the motor system. She also requires a nurturing and supportive social sys- tem-read "family" if at all possible-to surround her and react to her be- havior so she may learn from her actions and those of her playmates. We must not interpret "least restrictive environment" to mean "normal." Universal mainstreaming is as inappropriate as blanket institu- tionalization for disabled children. A home can be as restrictive as an insti- tution if the child is not given every opportunity to develop. The bottom line 43 questions should be, is the child being given every opportunity to learn or develop inherent abilities and have we, as a responsible society, removed all barriers and placed the child in the most opportune setting for develop- mental interactions to occur? In this country there are hundreds of ventilator-dependent children in ter- tiary care centers. Many of these children no longer need to be there. There are also hundreds of thousands of children in this country with health im- pairments or other disabling conditions who are alive today because of ad- vances in scientific knowledge and its clinical application. Children with cystic fibrosis, hemophilia, arthritis, malignancies, muscular dystrophy, and other conditions now survive longer and demand full active participa- tion in life. We have obligations to remove the barriers to active functional lives for all of these children. These children and young adults with health impairments face similar problems in receiving known methods of optimal care, in the least restric- tive environment. One barrier facing them is the inability of many health care personnel to recognize the need for a system to plan individualized non-hospital care for each patient in a manner that permits all social, health, education, and family resources to be parlayed into a continuum of care. This barrier is a common thread running through all care systems, in- cluding in-hospital care, but I wish to emphasize today the out-of-hospital need. This community need has been recognized for decades, but the solu- tions for implementation continue to escape those charged with ensuring ac- cess for all children to optimal community services. This need to use available community resources through effective communication and plan- ning is especially important today when such a large percentage of in- hospital costs are due to utilization by a rather concentrated segment of all children, namely children with chronic disabilities restricting their func- tional life. To function properly as part of the comprehensive services for handi- capped children, a health care plan must consider the handicapped child not as a sick child but as a well child with a disability. There is still a tendency, even among some health professionals, to view the handicapped child as unwell and to see health care being performed in a segregated environment. A mentally retarded child, or a blind child, for example, may not have any unusual health-related problems. In other cases, the handicap itself may be health related, or may have chronic health-related aspects to it-such as in the case of the child with asthma or the child with spina bifida. In any case, the children are best and most economically cared for in the mainstream of the health care system, where they have access to the full range of primary, secondary, and tertiary services, not in a system set aside for the exclusive use of the handicapped. It is especially important to understand that the comprehensive services required by children with handicaps will vary with the functional system or systems affected and the severity of the impairment. At birth, two percent of all liveborn infants have discernible handicapping conditions. By age five, approximately ten percent are considered handicapped. There must be a recognition that we require differing screening and identification systems with differing capabilities during that five-year period. We need to structure 44 a system that flows from a medical/nursing orientation for infants and tod- dlers under 30 months when almost all discernable or evolving handicaps are health-related, to a cognitive orientation with an educational perspective for the older child. This is a time when almost al1 new disabilities are related to the central processing system. Development-appropriate screening activi- ties can then be provided that are cost effective and reduce duplication of effort. However, to be efficient, a process of communication must be es- tablished between the child's physician and the school during all such iden- tification projects. It must be remembered that during the elementary-school years, the ma- jority of disabilities are related to the central processing system. Of the eight million handicapped individuals aged between birth and 21 years, only 20 percent have handicaps related to sensory deficits, motor disabilities, health impairments, or emotional disorders. The remaining 80 percent of all school-aged children with handicaps have mental retardation, learning dis- abilities, or language dysfunctions. Of this 80 percent, the majority have single system disabilities, those without complicating secondary disabilities that require a major coordination of services. There are few, if any, studies to assist in understanding the percentage of children with disabilities who require primary, secondary, or tertiary level care of their health or medical needs. Discussions with experienced clini- cians suggest that approximately 85 percent of all children with disabilities can be adequately cared for by primary care physicians communicating with the one "system" used by all children, the school. An additional I5 percent require referral to secondary physicians. Many have secondary compli- cating conditions that require coordinating functions between the primary referring physician and other community-based services or assistance agen- cies. Of the 15 percent requiring secondary level services, about one-third will also require, either occasionally or continuously, the medical or health care services of a tertiary center. Approximately 85 percent of the health and medical needs for children with handicaps can be provided through the primary care system, aided by a modest level of communication between the physician and the school, as the physician provides ongoing health care supervision. Examples would in- clude children with non-organic mental retardation, uncomplicated seizure disorders, or language dysfunctions. The primary care physician has a re- sponsibility to ensure that all medically remediable aspects of the handi- capping condition have been evaluated and treatment initiated if possible. Secondary level health care and coordination of many health and non- health-oriented services is required by three groups: 1. Those children referred from primary care physicians for diagnostic services, or evaluation of complications from their original disability. 2. Those labeled health impaired-such as children with cystic fibro- sis, hemophilia, juvenile rheumatoid arthritis, asthma, diabetes, cerebral palsy, or muscular dystrophy, of such a degree of severity they require a level of care greater than that available in the primary care system. 45 3. That group of children with complicated and interconnected health, social, and educational needs labeled as having "chronic conditions requiring long term care; of psychosocial and learning problems; behavioral and environmental effects; and problems related to family stress and parental actions and inactions. These problems re- quire a multidisciplinary approach above and beyond traditional nursing and physician care." The basic need for this group is coor- dinated care as opposed to the direct provision of medical care. Tertiary level care is required for that five percent with disabilities such as severe asthma, cystic fibrosis, cerebral palsy, muscular dystrophy, spina bifida, or similar conditions that require the expertise of those usually found in a medical center or university program. Irrespective that such care requires highly specialized personnel and sophisticated surgical and rehabilitative technology and treatment methods, the majority of the follow-up care to such tertiary care procedures is accomplished back in the local community using community resources. Studies have been accom- plished that demonstrate cost efficiency when such community care is coor- dinated with that done in the tertiary center. From these discussions, we can draw three important conclusions relating directly to the original question, "Will the disabled children of this country also continue to be handicapped?" First, there is a constant need to recognize the concept of individual dif- ferences in all children-especially those with disabilities-so that they may receive appropriate services. Not all children with cerebral palsy should be programmed with the mentally retarded; not all ventilator-dependent children require the same system as Katie Beckett--if our system is to min- imize financial burdens and minimally interefere with a disabled child's development. Second, there is a need to structure a community-based system to coor- dinate the evaluation and planning of services for the fifteen percent of dis- abled children who have complicated or multifaceted disorders and to recognize that this entails more than medical or nursing care. There must be a smooth flow of information between all social, medical, educational, and family concerns; responsibility and accountability for providing and follow- ing up on services must be assigned and accepted. Third, there must be a realization by all the remaining service providers, health planners, legislators, and health financiers, that such community- based evaluation and planning is necessary if barriers to maximum achieve- ment for all disabled persons are to be removed. There is no one uniform formula to guide individual communities toward such a system. Each state must review its individual health, education, and social service state plans that meet the state's individual geographic, political, and demographic needs; each state must work cooperatively to create a community-based system for those disabled children who require a coordinated evaluation and planning function. This workshop is an important step toward developing such a system. Using the ventilator-dependent child as a focus for concentrated discussion 46 and planning will undoubtedly alert many persons to the need for the sys- tem. However, the larger effort must be in furthering communication be- tween state Maternal and Child Health programs (including Crippled Children's Services), with state education agencies, local education agen- cies, and those professional organizations whose members have critical roles to play in formulating new methods of sharing evaluation and plan- ning functions. This effort is currently underway in twelve states due to very innovative collaborative efforts funded by the Office of Maternal and Child Health and the Office of Special Education, and involving the American Academy of Pediatrics and the national network of University Affiliated Programs. Other states have combined planning functions between State M and CH and State CC programs as they move to plan cooperatively and implement the provisions of block grants. Not surprisjngly, state educational agencies are finding these extremely useful forums in which to participate and fur- ther mutual goals. A last but extremely critical need-is for each person attending this Workshop to realize the tremendous task remaining before us. Our task is to educate our fellow workers and to influence schools preparing psychol- ogists, insurance executives, physicians, nurses, dentists, therapists, teachers, social workers, lawyers, business executives, and administrators about the needs discussed in this Workshop. Our personal actions can be multiplied a thousandfold if we accept the challenge of working with our University and Community College peers to include these concepts in their students' professional preparation and in the in-service education programs available to practicing professionals. In addition, we must share a similar education program with parents of disabled children and with the general public. The best of available science was not able to prevent Katie from becoming disabled-even in the sophisticated, caring system currently in place. Con- ferences like this one should go a very long way to remove barriers that could bar her from enjoying a full productive life, barriers that could also make her become handicapped. Thank you for allowing me to share these thoughts with you today. 47 IMPLICATIONS FOR CARE: THE TITLE V PERSPECTIVE John C. MacQueen, M.D. Title V programs have the legislative responsibility for providing health services to mothers and children. The Title V programs include the State Maternal and Child Health and the State Crippled Children's programs as well as the SPRANS (Special Projects of Regional and National Signifi- cance) programs. These programs include the pulmonary center, the ge- netic, the hemophilia, and other programs of regional and national signifi- cance. State programs have been designed to meet the particular needs of each individual State, and thus differ from each other. In addition, each of the SPRANS programs has its own agenda. Those of us from State programs are not surprised that a new type of medical problem-that of the ventilator-dependent child-has been identi- fied and that a proposal is made to provide services for the children so in- volved. The Federal-State public health programs for mothers and children have been developed over the years to provide new services for what were then new problems. The early regional programs to provide care for con- genital heart disease, rheumatic fever prevention, cleft-palate, PKU identi- fication, development of pediatric intensive care, hemophilia, and genetics programs were created when new problems were identified for which a form of treatment was available. Each of these programs was originally intro- duced at some type of meeting or conference similar to the one that we at- tend today. Those of us from agencies involved with providing services for handi- capped children also recognize that the services needed by the ventilator- dependent child are in many ways similar to those needed by hundreds of thousands of other disabled children in the nation. Thus, carefully devel- oped programs meeting the needs of the ventilator-dependent child have been designed: so that the services are family oriented, multi-disciplinary, and coordinated. Each child has an individual plan of care, and some per- son is responsible to work with the family to assist in carrying out that plan of care so that the costs of the services do not destroy the family's finances. The goal of treatment is one of establishing as much personal independence as possible. These, of course, are the accepted principles of long-term care that have been tested and established during recent decades by those in- volved with providing services for children with continuing health problems. Thus, the proposed programs providing services for the ventilator- dependent child differ from the current ones only in the technical nature and complexity of the services needed to address problems unique to these children. This should not surprise us. We are all aware of advances made in the last decades in the diagnosis of acute medical problems and in the diffi- cult and technical forms of treatment. Many of these services may be so technical, however, that the current State Crippled Children's programs, designed to provide traditional services, may have difficulty in providing for these new technologies. This represents a major challenge to those of us 48 responsible for the design and administration of State programs. Title V programs must respond as they have responded to the development of new programs in the past, even though this may require major changes in the de- sign of some State programs. Many of us who are responsible for State Crippled Children's Programs have been concerned for some time that services for handicapped children have not evolved into a three-tiered system comparable to the three-tiered American medical care system. The exact role of the Title V programs and, more exactly, theCrippledChildren's programs in such a three-tiered system is not clear. It is apparent that State Crippled Children's Programs must work jointly with those who function in the tertiary care centers, since these centers pro- vide much of the complex technical modern care and conduct research. Sim- ilarly, crippled children's programs must work closely with practicing physi- cians who provide secondary care. Historically, these programs have worked closely with the medical community and have made it possible for the State Crippled Children's programs to be the major subsystem for providing serv- ices for the disabled child. Crippied Children's programs must work even more closely with organizations and professionals who provide primary support services in the community. Reference has been made to special demonstration projects jointly con- ducted by the Division of Maternal and Child Health and the Department of Education. These projects are exploring how children's services can best be coordinated in the community. The Crippled Children's programs can and should serve as the lead agency in the community to coordinate the net- work of services required by many children who have chronic health prob- lems and can be involved with payment for those services for which they are responsible. It would be very unfortunate if free-standing State categorical programs were created to provide services for the ventilator-dependent child. The crea- tion of single disease programs has not proved to be a satisfactory long-term solution. State Title V programs, therefore, should have a significant part in the coordination of services required by ventilator-dependent children. There is no doubt that our national goal should be access to needed serv- ices for all ventilator-dependent children, but the problem of implementing that goal will be very difficult. We must be realistic about the times in which we live. In current national policy, the States determine what public health programs should be provided based on the individual State's assessment of need and available resources. However, the great majority of States do not have in place a process or system to review the needs for health services. Most States are in great financial difficulties and are going to be very reluc- tant to assume the responsibility for new health programs. Thus, implementation of the recommendations of this conference will re- quire imagination in program organization and may require more political activity than those of us who are health providers wish to conduct. The Pennsylvania experience proves the possibility of obtaining state funds. From the perspective of the Title V program, the basic question is how, at this time of public austerity, can we modify and coordinate health programs so we can provide contemporary medical care to the most children? Those of us responsible for Title V programs accept the challenge and will keep high on our agenda the special problems of the ventilator-dependent child. 49 IMPLICATIONS OF WORKSHOP RECOMMENDATIONS This Workshop focusing on the ventilator-dependent child has given us a concrete and meaningful way to look at the needs of all children with dis- abilities and at the needs of their families. The ultimate value of the confer- ence will be determined by its effect on those involved in the care of children with handicaps. The recommendations presented to the Surgeon General have implications for the care of all children with disabililties. 1. Define the Scope of the Problem There remains a need to define better the numbers and types of disabili- ties experienced by infants, children, and young adults in this country and to better assess the impact on social, health, education, and family related needs. Considerable progress has been made in some areas but a system in- tegrating functional, social, health, and family concerns remains to be de- fined, accepted, and consistently used by all service personnel and agencies. Needs are magnified when they occur during rapidly changing developmen- tal periods in a child's life or when the child is desperately attempting to minimize the effects of the disability. 2. Develop Model Standards Significant advances in health care for all children have been accom- plished through the use of model guidelines and standards for health care. Examples include regionalized perinatal care and improved access to immu- nizations. These models and standards developed by a consensus of profes- sional associations, were widely distributed and are now generally accepted. Similar models and standards must be developed to identify, evaluate, and provide coordinated care at all levels for persons with disabilities. Care standards for cohorts of disabled children with special needs must be super- imposed on generic care standards for all children with disabilities. All standards must focus on family needs, with an eye for innovation and with compassion and concern for the quality of life for each disabled child. Care- ful consideration must be given to identifying methods of care that conserve and effectively use scarce fiscal and human resources. 3. Develop Systems of Regionalized Care Matching the needs of disabled children with available resources will de- mand a system of care that reflects concern for generic social, educational, health, and family issues and that can focus on times of transition in dis - abled children's lives. Targets for concentration of resources will be deter- mined by such factors as incidence, prevalence, and severity of the disabil- ity; location of the needed service, and other geographic and demographic characteristics of the population. Traditional methods may suffice for pro- viding community based health care for infants, children, and young adults with relatively uncomplicated disabling conditions. However, regionalized 50 care will be required to assist those disabled children with complicated or life-threatening conditions, or who require highly specialized tertiary care. 4. Improve Financing of Care The service system must adequately compensate providers and consumers using out-of-hospital facilities which are close to the patients' home com- munity and which meet established care standards. Funding mechanisms must also be made available for expensive out-of-hospital technical equip- ment that reduces the length of hospital stays. Planning and coordination of community services for complicated and serious disabililties must be recog- nized as a legitimate reimbursable expense. 5. Identifr Areas of Abuse Potential Actions and inactions can both contribute to abuse of the care system for the disabled child. Elimination of unnecessary, duplicated or inappropriate services assure quality care and control costs. Standards and regulations must be developed and monitored by qualified professionals familiar with the service delivery issues. Methods to provide parents and providers with information or optimal services for children with disabilities must be an es- sential part of the regionalized system. 6. Incorporate into Training Curricula Principles of Care For Children with Disabilities There is a need for the incorporation of clinical experiences relating to the care of disabled infants, children, and young adults into all levels of pre- service and in-service education for health professionals. Utilization of interdisciplinary methods in the training process encourages coordinated clinical care. Teaching models should enhance professional satisfaction in caring for disabled children. Methods to improve communication skills among patients, parents, and fellow workers must be inherent components of the training program. 7. Support Research in the Care of Children with Disabilities While our scientific understanding of specific disabling diseases and condi- tions is sophisticated, a great need remains to learn more about optimal meth- ods of health care provision for disabled children. Research should include in- vestigations into a) curricular revisions to better train professionals in evahta- tory methods and treatment techniques; b) methods to enhance communication and coordinating skills; c) procedures to improve financial reimbursement pro- cedures; d) methods to promote intra- and interagency understanding; and e) methods to immediately disseminate new information concerning the care of disabled children. Increasing concern for fiscal responsibiiity and accountabil- ity will dictate the wisdom of devoting significant portions of available resources to expand research and development endeavors. 52 SUMMARY OF THE WORKSHOP In the summer of 1982, Surgeon General C. Everett Koop, M.D. re- quested that a Workshop on Children with Handicaps and their Families be convened to seek out ways to lessen the handicaps imposed on disabled chil- dren and to promote child and family self-sufficiency and autonomy. The workshop was held at The Children's Hospital of Philadelphia on Decem- ber 13 and 14, 1982. Over 150 individuals, including handicapped patients, their families and those involved with their care, were invited to participate in the conference. An additional 100 people attended parts of the proceed- ings because of their interest in the welfare of handicapped children. All of the participants paid their own expenses or were supported by their own in- stitutions. Financial assistance was provided for participating patients and parents. The Workshop was called in response to the revolutionary transforma- tions in medical technology which have taken place during the past four decades. Discoveries and applications in the fields of antibiotics and other drugs, in vaccines, in computerized imaging procedures, in life-support and monitoring, in laboratory techniques, and in the understanding of basic physi- ology have altered the prognosis for innumerable children. The baby who is born premature, the infant with severe congenital defects of the major or- gans or skeleton, and the child who is damaged by severe trauma or infec- tion can now be supported by the combination of high technology and trained medical personnel. Many of these children now survive, and most of those who do can look forward to a productive life, though often impeded by residual disability. Modern American society has geared itself to almost unlimited support of this technology. But support for the essential services systems outside the tertiary care environment has not kept pace for the increasing numbers of children whose lives are being saved. Technology is expensive, essential sup- port services are also expensive, and funds are limited. Numbers of ques- tions require consideration. Can we maintain the technological support, yet improve the essential services with the funds available? Do we need more funds? Can we find ways of redistributing the funds now being spent? Can we devise strategies for providing more humane service with fewer dollars? Those attending the workshop concentrated on the severe, specific prob- lems of the ventilator-dependent child, and the findings for this prototype were extrapolated for their implications for all handicapped children. Dr. Robert G. Kettrick, Chairman of the Workshop, challenged the audi- ence to accept responsibility for insuring that all reasonable care alternatives be made available for ventilator-dependent children. He asked them to identify and correct the circumstances which prevent transfer from an acute facility to home or community alternatives and presented a number of illus- trated case histories representative of the progress which can be achieved by a child on home care. 53 Presentations of programs in Illinois, New York, and Pennsylvania ex- plored problems and progress in meeting the needs of increasing numbers of ventilator-dependent children. A parent, Mrs. Betty Wartenberg, presented a summary of the life of her nine-year-old son. She gave an account that re- called the years on ventilator support in an intensive care unit, the disrup- tions to family unity, and of the remarkable progress made after his transfer to home care. Following these presentations the participants were assigned to working groups where a mix of disciplines were used to assure an interchange of ideas and perspectives. Parents met insurance people, government execu- tives saw and talked with handicapped patients who were in wheelchairs and on ventilators, executives of service organizations walked the acute and in- termediate wards of the hospital and interacted with children who have lived there all their lives-3 or 4 years; legislative aides participated with physicians and hospital administrators. During this brief time a mechanism evolved which cut through the intermediaries of typed letters, impersonal phone calls, and layers of formalization. A consensus of the working groups' deliberations was reported to a final plenary session, which marked the close of the workshop. SYNTHESIS OF THE DELIBERATIONS AND THE SURGEON GENERAL'S RESPONSE The summaries and recommendations of the workshop groups reveal an overwhelming diversity of concepts and directions to be considered. Many ideas arose repeatedly during the two days of discussion and can be grouped within broad categories: o Developing regional systems of care o Defining the scope of the problem o Developing model standards for quality assurance o Incorporating principles of care for children with disabilities into current education curricula o Identifying areas of potential abuse o Supporting research on the care of children with handicaps o Improving financing of the kinds of care these children and their families need While the workshop did not focus specifically on ethical matters, the ef- fect of each participant's set of social values was always apparent during discussions. Interaction was influenced by each person's values, conscious or not, stated or unstated. Throughout the process one quality-humane- ness-permeated all. Humaneness, thus, was a common thread and a uni- versal motivation. Every expression of thought seemed to emanate from the theme, "What is best for the child?" 54 In declaring the Workshop a success and accepting its recommendations, the Surgeon General praised the participants for their efforts and expressed his belief that the eventual outcome will be better health care for a more di- verse group of children with disabilities. In his closing remarks, Dr. Koop assured the participants: o That funds would be available for a small number of demonstration projects to develop the structure of a regionalized system; o That a study of the national prevalence of ventilator-dependent chil- dren would be encouraged; o That professional organizations would be encouraged to develop model standards for care; o That public and private institutions will be encouraged to incorporate principles of care for ventilator-dependent children into their curricula; o That abuses of resources will be identified and corrected; o That those public and private agencies which fund research will be made aware of the issues presented at the Workshop; and o That a primary focus of the federally-funded demonstration projects would be the issue of cost reimbursement from public, private, and voluntary sources; cost-reimbursement issues would continue to be discussed with insurers. "Where we have it in our power, we hope to make their handicaps tempor- ary, or, at least to ameliorate their severity. We will be using a variety of tech- niques to continue the momentum which has developed at the Workshop, and I will report back to you as we make progress on the various suggestions you have passed on to me as Surgeon General." "The Department of Health and Human Services has a very strongcommit- ment to improve services to disabled children and their families. And, as long as I am Surgeon General, disabled children have a very strong advocate in the Public Health Service." 55 APPENDIX A PARTICIPANTS Fred Abbey Policv Coordinator/Health Rm 825-H Hubert H. Humphrey Bldg. 200 Independence Ave., SW. Washington, DC 20201 Faye G. Abdellah, Ed.D. Deputy Surgeon General and Chief Nurse Officer U.S. Public Health Services Parklawn Building Rockville, MD 20857 Thomas Aceto, M.D. Chairman Department of Adolescent Medicine St. Louis University School of Medicine St. Louis, MO 63104 Augusta Alba, M.D. Associate Director Goldwater Hospital, Rehabilitation Division New York, NY 10044 Richard Apple General Manager Life Products, Inc. P.O. Box 3370 Boulder, CO 30307 Mary Ann Arty, R.N. State Representative 438 Baltimore Pike Springfield, PA 19064 Dan Baranowski, R.T.T. Department of Respiratory Therapy The Children's Hospital of Philadelphia 34th St. and Civic Center Blvd. Philadelphia, PA 19104 Michael Batten Presidential Correspondence The White House 1600 Pennsylvania Ave., N.W. Washington, DC 2ooo6 Constance U. Battle, M.D. Medical Director and Chief Executive Officer The Hospital for Sick Children 1731 Bunker Hill Rd., N.E. Washington, DC 20017 David Bauer The Conference Board 845 - 3rd Ave. New York, NY 10022 Mrs. Mark Beckett 2420 D. Ave., N.E. Cedar Rapids, IA 52402 Paul Bergan, M.D. Mt. Washington Pediatric Hospital Baltimore, MD 21209 Mr. and Mrs. Jan Berry 409 I Street La Porte, IN 46350 Marvin Berz Executive Service Corps of Chicago 208 S. Lasalle Chicago, IL 60604 Eugene Bilotti, M.S.W. Administrator, SSI-DCP 540 Iles Park Pl. Springfield, IL 62718 Mark Blitz ACTION 806 Connecticut Ave., N.W. Washington, DC 20525 Ruth Bock, R.P.T. Director, Home Care Team Children's Hospital National Medical Center Washington, DC 20010 Shirley Bonnem Vice President The Children's Hospital of Philadelphia 34th and Civic Center Blvd. Philadelphia, PA 19104 Evelyn Bouden, M.D. Director, Division of Parent, Child and School Health State Department of Health Harrisburg, PA 17108 56 Ruth Breslin, M.S.W., A.C.S.W. Chief Social Worker Maternal and Newborn Section Yale-New Haven Hospital New Haven, CT 06504 Benjy Frances Brooks, M.D. University of Texas Medical School at Houston Room 622 6431 Fannin St. Houston, TX 77030 John Brooks, M.D. Director of Pediatric Pulmonary Division University of Rochester School of Medicine P.O. Box 667 Rochester, NY 14642 Barbara Brown, R.N., M.S.N. Rehabilitative Clinical Specialist A.I. du Pont Institute Wilmington, DE 19899 Peter P. Budetti, M.D., J.D. Institute for Health Policy Studies University of California San Francisco, CA 94143 Danuta Buzdygan, M.D. 200 Jefferson Road Princeton, NJ 08540 Henry Cecil, M.D. Director, Division of Child Development and Rehabilitation The Children's Hospital of Philadelphia Philadelphia, PA 19104 Mrs. Terri Connors 5103 Greenridge Ct. Peoria, IL 61605 Camille Cook, M.S. Nursing Consultant Division of Maternal and Child Health Parklawn Bldg., Room 7-22 5600 Fishers Lane Rockville, MD 20857 Donald A. Cornely, M.D. Professor and Chairman Department of MCH The Johns Hopkins University School of Hygiene and Public Health Baltimore, MD 21205 Berniece Cramer, M.A. MCH Nursing Consultant Region V 300 S. Wacker Drive, 33rd Floor Chicago, IL 60616 Glenna Crooks, Ph.D. Deputy Assistant Secretary for Health Planning and Evaluation HHH Bldg. Room 703-H 200 Independence Ave., S.W. Washington, DC 20201 Leonard Davis Blue Cross of Greater Philadeluhia 1333 Chestnut St. Philadelphia, PA 19107 Carolyn M. Del Polito, Ph.D. American Society of Allied Health Professionals One DuPont Circle Washington, DC 20036 Mrs. Fitz Eugene Dixon, Jr. Board of Managers The Children's Hospital of Philadelphia Philadelphia, PA 19104 Mary Elizabeth Donar, R.N. Head Nurse, PICI The Children's Hospital of Philadelphia Philadelphia, PA 19104 Paul Donelan, J.D. Deputy Director/Government Relations American Medical Association I 110 Vermont Ave. Washington, DC 20005 JoAnne S. Downes Administrator, Hospice Program Pennsylvania Hospital 8th and Spruce Streets Philadelphia, PA 19107 John J. Downes, M.D. Anesthesiologist-in-Chief Department of Anesthesia The Children's Hospital of Philadelphia Philadelphia, PA 19104 Bonnie Eddington Health Planning Specialist Room 401, New Jersey Department of Health Trenton, NJ 08625 Paul S. Entmacher, M.D. Vice President'and Chief Medical Director Metropolitan Life Insurance 1 Madison Ave. New York, NY 11010 Jill Eshleman R.D. 2. Box 84 Nottingham, PA 19362 57 Mrs. Rose Eshleman R.D. 2, Box 84 Nottingham, PA 19362 Suzanne Feetham, Ph.D., R.N. Associate Director Nursing Education and Research Children's Hospital National Medical Center Washington, DC 20010 Allen I. Fields, M.D. Division of Critical Care Medicine Children's Hospital National Medical Center Washington, DC 20010 Dennis Filipovitch Pennsylvania Department of Health P.O. Box 90 Harrisburg, PA 17120 Judson Force, M.D. Chief. Division of CCS Department of Health and Mental Habilitation 201 W. Prescott St. Baltimore, MD 21201 Mrs. Bruce Forsberg Chairman-Elect, Board The National Association of Children's Hospitals and Related Institutions, Inc. 1601 Concord Pike Wilmington, DE 19803 Renee C. Fox, Ph.D. Professor of Sociology 507 McNeil/CR University of Pennsylvania Philadelphia, PA 19104 Charles Frame 5843 North West Circle Chicago, IL 60631 Albert C. Fremont, M.D., M.P.H. Director, Child Development Clinic 751 South Bacom Ave. San Jose, CA 95128 David E. Gagnon, Ph.D., M.P.H. Vice President for Planning Women's and Infants' Hospital 50 Maude St. Providence, RI 02908 John Gamaldi, M.S.W. Social Work/Consultant Pennsylvania Department of Health P.O. Box 90 Harrisburg, PA 17108 John Garrison, M.P.A. Executive Director National Easter Seal Society 2023 W. Ogden Ave. Chicago, IL 61612 Myron Genel. M.D. Robert Wood Johnson Fellow Institute of Medicine National Academy of Sciences Washington, DC 20418 William Gibson, M.D. Executive Director Elizabethtown Hospital and Rehabilitation Center Elizabethtown, PA 17022 Allen I. Goldberg, M.D. Director, Division of Respiratory Care Children's Memorial Hospital 2300 Children's Plaza Chicago, IL 60614 George Gwilliams R.D. #2, Box 487 Harvey Lake, PA 18618 Alfred Healy, M.D. Chairman, Division of Developmental Disabilities University Hospital School University of Iowa Iowa City, IA 52242 Ruby Hearns, Ph.D. Robert Woods Johnson Foundation P.O. Box 2316 Princeton, NJ 08540 Hannah Hedrick, Ph.D. Assistant Director, Department of Allied Health Education and Accreditation American Medical Association 535 N. Dearborn Chicago, IL 60610 Susan L. Hughes, D.S.W. Assistant Professor. Community Health _._~.~~ , and Preventive Medicine Northwestern University Medical School Evanston, IL 60201 Vince L. Hutchins, M.D. Director, Division of MCH Department of Health and Human Services Parklawn Bldg., Room 7-39 5600 Fishers Lane Rockville, MD 20857 Joseph Ichter, M.D. Vice President for Medical Affairs Pennsylvania Blue Shield Camp Hill, PA 17011 58 Roseanne Langham, Dr. P.H., R.D. Administrator, Nutrition Services Louisiana Department of Health and Human Resources New Orleans, LA 70160 Frank Jirka, Jr., M.D. American Medical Association 535 N. Dearborn Chicago, IL 60610 Margaret Jones Southeastern Chapter Local MDAA Patient Service Coordinator Morelin Plaza 111 Street Road Southampton, NY 18966 Ray Kalinsky AAMED Inc. 1215 S. Harlem Ave. Forrest Park, IL 60130 Anne Keller, M.D. Director, Division of Rehabilitation Bureau of Professional Health Services State Department of Health P.O. Box 90 Harrisburg, PA 17108 Robert Kettrick, M.D. Department of Anesthesiology and Critical Care The Children's Hospital of Philadelphia 34th and Civic Center Blvd. Philadelphia, PA 19104 Arthur Kohrman, M.D. Director, LaRabida Children's Hospital and Research Center E. 65th St. at Lake Michigan Chicago, IL 60649 C. Everett Koop, M.D. Surgeon General U.S. Public Health Service HHH Bldg. 200 Independence Ave., S.W. Washington, DC 20201 George Kouba Care for Life Program 2300 Children's Plaza Chicago, IL 60614 Sheila Kun, R.N., P.H.N. Discharge Coordinator Children's Hospital of Los Angeles 4650 Sunset Blvd. Los Angeles, CA 90027 Fern Kupfer 607 Lynn Avenue Ames, IA 50010 William Lassek, M.D. Regional Health Administrator DHHS Region III P.O. Box 13716 Philadelphia, PA 19106 Mary Ann Lee, M.D. Pediatric Attending Division of Community Medicine St. Vincent's Hospital and Medical Center New York, NY 10011 Mathew H.M. Lee, M.D. NYU Medical Center Goldwater Memorial Hospital Franklin D. Roosevelt Island New York, NY 10044 David R. Linney Medical Financial Counselor Great Lakes Hemophilia Foundation 1701 W. Wisconsin Ave. Milwaukee, WI 53233 Edward Lis, M.D. Director, Division of CCS 540 Iles Park PI. Springfield, IL 62718 George Little, M.D. Chairman, Department of MCH Dartmouth Medical School Dartmouth-Hitchcock Medical Center Hanover, NH 03755 Robert P. Losey, M.D. Past President of PAC/LAC Perinatal Advisory Council Los Angeles Communities 11 I S. Central Ave. Glendale, CA 91204 Bryan Lute Director, Office of Research and Demonstrations Health Care Finance Administration 330 Independence Ave., S.W. Washington, DC 20201 John MacQueen, M.D. Iowa Specialized Child Health Services University of Iowa Hospitals and Clinics Iowa City, IA 52242 59 Phyllis R. Magrab, Ph.D. Director, Chid Development Center Georgetown University Hospital 3800 Reservoir Rd., N.W. Washington, DC 20007 Barbara Maidhof, R.N. New York City VNA 166-07 Hillside Ave. Jamaica, NY 11432 Kathleen McCormick, Ph.D. Assistant to the Chief for Research Nursing Department NIH, Bldg. 10, Room 8N202 Bethesda, MD 20205 Brian McDonald, M.S.W. Director of Social Work Children's Seashore House Atlantic City, NJ 08401 Merle G. McPherson, M.D. Medical Officer Division of MCH Parklawn Building, Room 7-22 5600 Fishers Lane Rockville, MD 20857 Solbritt Murphy, M.D., M.P.H. Director, Bureau of MCH State Department of Health Albany, NY 12237 Richard P. Nelson, M.D. Director of Developmental Disabilities Gillette Children's Hospital 200 E. University Ave. St. Paul, MN 55101 Harold O'Flaherty Special Assistant on Disability Policy Office of the Surgeon General HHH Bldg. 200 Independence Ave., SW. Washington, DC 20201 George Peckham, M.D. Director, Division of Neonatology The Children's Hospital of Philadelphia 34th St. and Civic Center Blvd. Philadelphia, PA 19104 Rosanne Perez, R.N., Ed.D., C.P.N.A. Professor and Chairman Department of Pediatrics, Family and Women's Health Nursing University of Indiana School of Nursing Indianapolis, IN 46202 James Perrin, M.D. Medical Director Primary Care Center Assistant Professor of Pediatrics Vanderbilt University Medical Center Nashville, TN 37232 Ann Pettigrew, M.D. Consultant California Children's Services 524 Van Ness Ave. Santa Cruz, CA 95060 Russell C. Raphaely, M.D. Director, Pediatric Intensive Care The Children's Hospital of Philadelphia Philadelphia, PA 19104 Frances Ritter, B.S.W. Director of Child Life Department The Children's Hospital of Philadelphia Philadelphia, PA 19104 Ron Rosenberg Vice President of Planning and Development Upjohn Health Care Services 2605 E. Kilgore Kalamazoo, Ml 49002 Thomas M. Russo Director Medical Assistance & Health Services New Jersey Department of Human Services 324 E. State St. Trenton, NJ 08625 Arthur Salisbury, M.D., M.P.H. Vice President. Medical Services March of Dimes Birth Defects Foundation 1275 Mamaroneck Ave. White Plains, NY 10605 John Sargent, M.D. Child Guidance Clinic The Children's Hospital of Philadelphia 34th and Civic Center Blvd. Philadelphia, PA 19104 Thomas Scanlin, M.D. Division of Pulmonology The Children's Hospital of Philadelphia Philadelphia, PA 19104 Madelyn Schultz, M.Ed. Program Analyst Administration on Developmental Disabilities HHH Bldg. Room 349F 200 Independence Ave., S.W. Washington, DC 20201 60 Tom Schworles Congress of Organizations of Physically Handicapped- 803 Monticello Place Evanston, IL 60201 Edward Sewell, M.D. Thomas Jefferson University Department of Pediatrics 1025 walnut St. Philadelphia, PA 19107 May Shayne. A.C.S.W. Liaison Officer and Research Associate Institute for Public Policy Studies Vanderbilt University Nashville, TN 37212 Benjamin K. Silverman, M.D. Co-Editor. Clinical Pediatrics 66 Mt. Lucas Rd. Princeton, NJ 08540 Ira Singer, M.S.P.H. Policy Analyst Project Hope Center for Health Information Carter Hall Millwood, VA 22646 James Snipe Chief. Policy Division OCHAMPUS Department of Defense Aurora, CO 80010 Ruth Stein, M.D. Associate Professor of Pediatrics Bronx Municipal Hospital Center Jacobi Hospital Bronx, NY 10461 Leon Sternfeld, M.D., Ph.D. Medical Director United Cerebral Palsy. Inc. 66 E. 34th St. New York, NY 10016 Jim Stith, M.H.A., M.P.H. Planning Consultant LaRabida Children's Hospital E. 65th St. at Lake Michigan Chicago, IL 60649 Richard D. Wood Chairman, Board of Managers The Children's Hospital of Philadelphia 34th and Civic Center Blvd. Philadelphia, PA 19104 Daniel R. Thomas Assistant Director for Consumer and Professional Relations Division Health Insurance Association of America 332 S. Michigan Ave. Chicago, IL 60604 Phvllis Zucker, M.P.H. Chief, Resources Branch Division of Policy Analysis Office of Health Planning and Evaluation 200 Independence Ave., S.W. Rm. 740-G Washington, DC 20201 H. A. Thompson President, Thompson Respirator Company 1630 Range St. Boulder, CO 80301 Theodore D. Tjossem, Ph.D. Chief, MRDD Branch NICHD, NIH 7910 Woodmont Ave. Bethesda, MD 20205 Edward van Amerongen President, American Home-Health Services 515 E. Gulf Rd. Suite 201 Arlington Heights Chicago, IL 60005 Bette and Don Wartenberg 1010 Pearson Dr. Joilet, IL 60435 Terry White Assistant Vice President Rockford Memorial Hospital Rockford, IL 61103 William G. Williams Director, Health Care Relations Provident Mutual Life P.O. Box7378 Phildelphia, PA 19101 Ann Wilson, Ph.D. Congressional Fellow Office of Senator Dale Bumpers Dirksen Senate Office Bldg., Room 3229 Washington, DC 20510 Elizabeth and Charles Wingel 46 Wildwood Avenue Landsdowne, PA 19050 Alexandra and Charles Wiseley 354 Harford Rd. Somerdale, NJ 08083 61 APPENDIX B FACILITATORS *Winifred Betsch, R.N. Director of Operating Room Services *A. Michael Broennle, M.D. Senior Anesthesiologist Suzanne Bronheim, Ph.D. Psychologist Child Development Center Georgetown University Hospital Washington, D.C. Eveline A. M. Faure. M.D. Medical Director Care for Life Chicago, Illinois Elly Henig, M.Ed., C.R.C. Director of Vocational Rehabilitation Education Rehabilitation Institute of Chicago Chicago, Illinois Vicki Karlin. L.C.S.W. Acting Director, Department of Social Work Child Development Center Georgetown University Hospital Washington, D.C. *Russell C. Raphaely, M.D. RECORDERS David Green, M.B.A. Trainer Acting as Recorder Director of Training and Staff Development Children's Memorial Hospital Chicago, Illinois Ann Kotterla, M.B.A. Trainer Acting as Recorder Training Coordinator Department of Human Resources Michael Reese Hospital Chicago, Illinois Mary Lou Box, M.S.N. 905 Wenrick Avenue Harrisburg, Pennsylvania *Margaret Cohen, M.S.N. Department of Nursing *Margie Forbes, C.S.W. Ventilator-Dependent Children Home Program Pediatric Critical Care Services Director, Pediatric Intensive Care Complex Ray Snarski, R.R.T. Special Projects Coordinator Division of Respiratory Care Children's Memorial Hospital Chicago, Illinois *David B. Swedlow, M.D. Anesthesiologist Carol Vaughn, R.N. Nursing Coordinator Care for Life Chicago, Illinois Patricia Gibbons, M.D. Fellow, Department of Anesthesia and Critical Care Services William Greeley. M.D. Fellow, Department of Anesthesia and Critical Care Services Barbara Kane, C.S.W. Department of Social Work Staten Island Hospital Staten Island, New York * Connie O`Brien, M.S.N. Ventilator-Dependent Children Home Program Pediatric Critical Care Services o Marianne C. Raphaely Chairperson Executive Council of Volunteer Organizations * Dolores Vorters, A.C.S.W. Department of Social Work *The Children's Hospital of Philadelphia 62 APPENDIX C PROTOTYPE HOME PROGRAM REVIEW FOR VENTILATOR-DEPENDENT CHILDREN The Children's Hospital of Philadelphia 1. GOALS o To provide safe respiratory support within the home environment o To resolve problems of cash flow for payment of services II. INITIAL STAGE A. Service Provision o Consultation with institutions planning home care for the ventilator-dependent child o Supervision of respiratory care of program participants o Home visits by health care team . Telephone access to health care team o Referral to appropriate service agencies o Coordination of inter-agency and family contract o Development of resource list o Development of parents' support group o Coordination of consultative services, i.e., nutrition, respi- ratory therapy, rehabilitation, etc. o Classification of nursing needs for third party payers o Crisis intervention o Supportive counseling (i.e., bereavement, effects of chronic illness on siblings, etc.) o Liaison between Commonwealth of Pennsylvania-Depart- ment of Health and Welfare and families o Liaison with vendors o Disbursement of Commonwealth of Pennsylvania-Depart- ment of Health and Welfare funds in order to meet legislative intent of Appropriation Act 17A sf 1980 B. Educational Services o Development and supervision of family and home care- givers pre-discharge training program o Provision of post-discharge parent education o Education for parent advocacy o Education for parent assertiveness o Education of health professionals regarding home-care for ventilator-dependent children o Liaison between families and school districts 63 C. Documentation and Investigation Needs o Patient classification of nursing care needs o Nursing assessment o Developmental assessment o Parents' Guide for Home Care o Interview guide for parents when hirit,: home-care givers o Nutritional assessment o Pre-discharge Social Work Protocol o Post-discharge Social Work Protocol o Individual Service Plan o Patient population survey o Resource list for parents and professionals o Documentation of program costs for ventilator-dependent children o Documentation of family costs for the care of a ventilator- dependent child D. Policy Guideline and Procedure Development o Eligibility review o Enrollment criteria o Equipment and supply lists o Motor vehicle accessory lists o Purchase agreements for equipment o Acquisition of capital equipment o Reimbursement for electricity bills III. SECONDARY STAGE A. Service Provision o Consultation with institutions planning home care for venti- lator-dependent child o Provision of nutrition consultant o Provision of a home visit by a member of the home health care team at least annually o 24-hour 7-day-a-week telephone access to medical personnel o Education of parents about community service agencies and their services o Provision of a forum for peer support o Provision of and payment for services of home care person- nel, i.e., nurses, respiratory therapists o Provision of an objective analysis of nursing care needs for prescriptions and negotiation with third-party payers o Exploration of resources for crisis intervention o Exploration of local resources for supportive counseling o Provision of library resource or bibliography on chronic ill- ness and related effects o Provision of expertise and cash flow to families for acquisi- tion of capital equipment, disposable and non-disposable supplies for health care and rehabilitation needs o Resolution of cash-flow dilemma o Provision of payment for necessary care not reimbursable by established third-party mechanisms 64 o Liaison with third-party payers to investigate and consider cost-effectiveness of home care vs. long-term institu- tionalization B. Educational Services o Development of instruction manual for hospital use in edu- cating and testing families in home health care of ventilator- and/or oxygen-dependent children o Development of a parent organization o Development of continuing education programs for health professionals involved in care of ventilator-dependent children o Proper placement within an educational system C. Documentation and Investigation Needs o Resolution of conflict between families and third-party payers relative to appropriateness of nursing care o Documentation of nursing needs o Development of program for acquiring comprehensive nurs- ing data base o Documentation of developmental profiles o Provision of hospital-based education to insure comprehen- sive education of families who will care for ventilator- dependent children o Documentation of nutritional status and interventions o Development of protocol for social workers who may be in- volved in discharge planning of ventilator-dependent children o Development of a protocol for social workers involved in the home care of ventilator-dependent children o Development of individual service plans for all children within the program o Definition of the number of acute-care institutions currently involved in the care of ventilator-dependent children o Development of family financial profiles o Documentation of medical and social services not being met by third-party payers o Definition of services mandated by existing State and Federal programs D. Policy and Procedure Development o Development of policies and procedures to provide uniform services to families enrolled in program E. Contingency Planning o Development of contingency plans to help families to deal with termination of money IV. FINAL ST-AGE A. Service Provision o Institutionalize a program within the Commonwealth of Pennsylvania, Department of Health and Welfare to insure that the needs of ventilator- and/or oxygen-dependent children and their families are met 65 B. Educational Services o Provide or insure access to an educational system as pro- vided for by the Commonwealth of Pennsylvania and Federal Law (PL 94-142 and Rehabilitation Act of 1973 Sec- tion 504) o Provide a comprehensive education program for profes- sionals involved in the care of ventilator-dependent children o Define a comprehensive continuing education program for families of ventilator-dependent children C. Documentation and Investigation Needs o Develop and prepare standards of care, costs, policies and procedures for the care of ventilator-dependent children o Investigate and document advantages and disadvantages of disposition alternatives for ventilator-dependent children o Investigate and document the effect of a ventilator-dependent child on family functioning 66 APPENDIX D SELECTED READINGS Better Health for Our Children: A National Strategy. The Report of The Select Panel for the Promotion of Child Health to the U.S. Congress and the Secretary of Health and Human Services (HHS) Volume I-Major Findings and Recommendations. Volume II-Analysis and Recommenda- tions for Selected Federal Programs. Volume III-A Statistical Profile. Volume I V-Background Papers. USGPO, Washington, DC, 1981. Child Health and the Community. Robert J. Haggerty, Klaus J. Roghmann and Iran B. Pless. John Wiley and Sons, Inc. New York, NY, 1975. "Collaborative Projects for the Health and Educational Care of Handi- capped Children." Supported by U.S. DHHS, Bureau of Community Health Services (BCHS), Public Health Service, Health Services Adminis- tration and U.S. Education Department, Office of Special Education and Rehabilitative Services, Rockville, MD. Community Workbook for Collaborative Services to Preschool Handi- capped Children. Prepared by American Association of University Affili- ated Programs for the Developmentally Disabled. Phyllis Magrab, Elynor Kazuk, and Lorne Green. Washington, DC, November 1981. Coordinating Services To The Handicapped: A Handbook for Interagency Coordination. Edited by Jerry 0. Elder and Phyllis Magrab. Paul H. Brooks Publishers. Baltimore, MD 21204, 1980. "The Cost Effectiveness of a Shared-Management Delivery System for the Care of Children with Cancer." F. Strayer, T. Kisker, and C. Fethke. Pediatrics 66:6 (Dee), 1980. "A Creative Approach to Caring for the Ventilator-Dependent Child." Barbara D. Schraeder. MCN: The American Journal of Maternal Child Nursing, 4~3 May-June, 165-170, 1979. "Developing a Community Team. " Prepared by American Association of University Affiliated Programs for the Developmentally Disabled. Phyllis Magrab, Jerry Elder, Ellie Kazuk, John Relosi, and Ronald Wiegerink. Washington, DC, 198 1. 67 Guidelines for Early Intervention Programs. Based on a conference- Health Issues in Early Intervention Programs. OMCH/DHHS. College of Nursing, University of Utah, May 1980. Handicapped Children, Strategies for Improving Services. Garry D. Brewer and James S. Kakalek. McGraw-Hill Book Company. New York, NY, 1979. "Hospital or Home Care for Severely Disabled: A Cost Comparison." A.L. Creese and P. Fieden. British Journal of Preventive Social Medicine 31:116, 1977. Illinois Home Care Survey. University of Illinois, Division of Services for Crippled Children. 1982. (For copy, contact: SSI Disabled Children's Pro- gram, 540 Iles Park Place, Springfield, IL 62718.) "Improvement in Lung Mechanics as a Function of Age in the Infant with Severe Bronchopulmonary Dysplasia." J.P. Morray, W.W. Fox, R.G. Kettrick, and J.J. Downes. Pediatric Research 16:290-294, 1982. "Long Term Pulmonary Care of Spinal Cord Injury." L.A. Pinkington, A. AIka, B. Bensol, et al. Respiratory Therapy (Nov-Dee), 1981. Medical Aspects of Developmental Disabilities in Infants and Children: A Resource for Special Service Providers in the Educational Setting. Division of Developmental Disabilities, University Hospital School, The University of Iowa, Iowa City, IA 52242 (In Press). Pediatric Education and the Needs of Exceptional Children. Michael J. Guralnick and H. Burtt Richardson, Jr. University Park Press, Baltimore, MD, 1980. Pediatric Intensive Care Network for Northern and Central California. Ann H. Pettigrew. California Children's Services: Sacramento, 1982. Proceedings for an International Symposium: Whatever Happened to the Polio Parent? Editors: Evaline A.M. Faure, Allen I. Goldberg. North- western University Press: Chicago, 1982. (Available from: Education and Training, Rehabilitation Institute of Chicago, 345 E. Superior Street, Chicago, IL 60611. Phone: 312 6496042.) Promoting Health/Preventing Disease: Objectives for the Nation. DHHW PHS, Office of Disease Prevention and Health Promotion, Center for Disease Control and Health Resources Administration. USGPO, Washington, DC, Fall 1980. 68 Public Policies Affecting Chronically Ill Children and Their Families. Van- derbilt Institute on Public Policy, Vanderbilt University, Nashville, TN 37240 (Zn Press). "Pulmonary Function in Chronic Respiratory Failure of Infancy." N.V. Lieber, J.P. Morray, R.G. Kettrick, and J.J. Downes. Critical Care Medicine 8596, 1980. A Report on Home Care for Respirator Dependent Children in Massachu- setts. Commonwealth of Massachusetts, Office for Children, Department of Public Health and The Federation for Children with Special Needs. 1981. (For copy, contact: Thomas Chiodo, Assistant Director, Massachusetts SSI Disabled Children's Program, Office for Children-Room 246, 120 Boylston Street, Boston, MA 02116.) The Second Annual Report to Congress on the Impiementution of P.L. 94-142: The Education for al/ Handicapped Children Act. U.S. Department of Education, 1981. "Sequelae of Prolonged Ventilatory Support for Pediatric Surgical Pa- tients. " M.M. Zeylea, S. Shaw, A. I. Goldberg, R. G. Kettrick, and C. E. Koop." Journal of Pediatric Surgery 14: 768-772, 1979. The Unexpected Minority, Handicapped Children in America. John Glerdman and William Roth for the Carnegie Council for Children. Har- court Brace Jovanovich, New York, NY, 1980. 69