Home Care Savitlgs Potential Draws National Ahtition Al Kemp Addresses Community-Oriented Home Care The disabled comprise the fastest growing segment of our population, and the most vulnerable within these groupings are the children and the elderly. Here in theSt. Louisarea,as is the case in the rest ofthecountry,wefindprobablythefastestgrowingsegmentof our population by age category - those over 65. This is the top region of the country as far as the proportion of percentage of elderly over 65. Medical, surgical and technical advances have saved the lives of children andadultswhowould have died in past years. Children and adults with multiple disabilities now live longer and have more productive lives. The ramifications for health care needs of these disabled children and adultsdepen- dent upon technology for daily living are far reaching and complex. Pioneering efforts of doctors and nurses, allied health professionals, state agency officials, insurance, hospital adminis- trators, social workers and parents' advocacy groups have made it possible for ventilator-dependent children to live in the community with significant savings. Yet now, this grow'ing population needs regional coordinating organizations to maintain and refine current strategies providing community-based health care to guide and support parent groups and to educate the professional and private sector about the dynamics of community-oriented home care. For these reasons, we are gathered here today.0 Sam Giordano Says Communication Vital To Home Care Success This country's method of providing health care is undergoing a great deal of scrutiny and revision. The problem is in achieving a balance between cost efficient medical care and quality care. One possible and popular solution to the problem is the "unbundling" of medical services. Simply stated, this means that efforts should be made to effect an appropriate match of health care resources to patient needs. This results in a more cost effective way of rendering care with assurances that the patient will receive necessary medical care. A key element in the unbundling process is home care. The Surgeon General, C. Everett Koop, MD, recognized that a significant benefit could be derived if certain patients not re- quiring hospitalization could be supported in their home environments. Pursuant to that goal, Dr. Koop convened a workshop on the plight of the ventilator-dependent child in late 1982. Several important recommendations were generated at the workshop. Not the least of those was to hold future workshops to identify problems and barriers confronting the home care patient, and to establish a network of that first follow-up workshop. Held Dec. 13, 1983, in St. Louis, MO, health care providers and ventilator-dependent patients from across the country convened to share their stories and to develop an understanding of the problems with home care under our present health system. I am sure that after reviewing this issue, you will find that there is a great deal of support for the home care patient, however, that aid is lacking central coordination and consistency. It is our hope to continue to present the latest information on ideas, problems and methods, for indeed the first step in establishing an adequate structure to support home care must be Communication -two-way communication. This issue satisfies only a part of that request. I invite you to satisfy the second part: please give us the benefit of your thinking. Please share with us ideas that may not be presented in this issue, and certainly send us comments on the subjects as they are presented here. This exchange will eventually result in an efficient and effective home care support network throughout this country. 0 /`i/hat Is A waiver? ~~~~ of the articles in this specral report On the Surgec' ieneral's workshop refer t0 the waivers available t0 ven:: aTc-- , endent patients, lf you are unfamiliar with the waiver Z-ccess- 1: important to note that there are different kinds Of wa `*e's l,, jgSj, as part of the Budget Reconciliation Act, Congress ga\e he StateS greater flexibility to establish home and cOmmun:T"- ,ased tong term delivery systems for Medicaid individuals at risk rf institutionaIizatiOn. These waivers, known as Section 2176 Maivers arequitedifferentintheirscopes.withsOmestates:argetlng ecus on the developmenta\\Y disabled. Each State reguesIs its ,olely on the aged and physically disabled POPUlatiOn, wnlle Otners 1wr-r range of services, and some do include respiratory theraP\ P' 3r el vu if `~,",~~~~a second kind of waiver permitted under the 2175 "model waivers" permit a state to target a specific `~~pa~~~oh~ore than 50 blind or disabled individuals for Medlcaid i lithout the waiver would be eligible for Medicaid benefits Only igibility and community-based long term care services who, i institutionalized. Further, there are the Katie Beckettw ly Section I 34 of PL 97-248. These wai he Option of extending coverage todisa-.- t home or in the community provided that the c are does not exceed the cost of institutional car nterestingly, and this is the basis Of part of the 1 4 hnsen the rrguments, only one state, Idaho, has cl .-- - / Section 134 Katie Seckett waiver oPtion, A very important fact to note about the wa'ver ;ystem is that it is exactly that - - -;=I ",.. .-- I ,,&es existing rules. It becomes the ex--, ather than the rule. The AART firmly believes that / lespiratory care for ventilator dependent aivers. established x ' + ,,,. vers give the states bled children living ost of the $RT's individuals ought to be the rule rather tm.-.. thr -,,on+inn Surgeon General Appeal To Society To Share lprobkns Of The Handicapped This meeting is a natural follow- up to the Surgeon General's Work- shop on Children with Handicaps and Their Families, which we held a year ago in Philadelphia. At that time, in my charge to theworkshop participants I said, "The way we deal with problems like these re- veals just what kind of society we are." I think the record of the past 12 months is clear enough. It shows that we are still a caring and com- passionate society - concerned about the health of children, sym- pathetic to the families who face enormouschallenges inthecourse of accepting and raising a handi- capped child, and innovative in the way we bend the political and eco- nomic environment to make it serve the human needs of our families, rather than the reverse. But those are generalities. Ac- tually, I have two specific reasons for being especially pleased to bgC.EweretiKmop,MD open thisconferencethismorning. First, I can't tell you how proud I am to be in the government, to have held a conference, and then, a year later, to be able to look back and see the results of that conference. Even after two-plus years in this position, I still consider myself to be the new kid on the block in the Public Health Service. Many of my colleagues and friends in the Pub- lic Health Service have been fight- ing the battle of inertia for much longer than I. As the new kid, I haven't had the years of triumph and uncertainty that usually come with the territory of public service. But we've been very fortunate. In this highly complex and emotion- ally charged area of service to handicapped children and adults and their families, we've been able to make significant, measurable progress. I'm very proud of that - asapublicservantandasyourSur- geon General -and I hopeyoufeel the same way. in a single year, we may have made a difference in the lives of many hundreds of children and their families. My second reason is a little dif- ferent. Over the past year, we've been devoting our time to an issue that brooks no obstruction, that admits of no pettiness - an issue that inspires people to offer the best that is in them in order to plan and implement such a worth- while program. The problems faced by ventilator-dependent patients and their families can be staggering. They are among the most complex problems to appear within the environment of medi- cine. They require innovative, care- ful relationships between medi- cine and community social ser- vices. These are also costly prob- lems, requiring the helpof accoun- tants with the souls of saints. And the problems are also inextricably linked to a cluster of profound mys- teries -the mystery of the human infant, the mystery of parenthood, the mystery of personal courage, and the mystery of family love. As formidable a task as we set for ourselves, I have to neverthe- less say that it was the right task. For too many years we had talked about this`problem and we sym- pathized and commiserated and had come up with a number of steps to somehow lighten the bur- den for both the ventilator-depen- dent patient and his or her family. But clearly we were not doing enough. Also, the way we were going about it said quite a bit about our intentions, generally in regard to the solving of many other serious socio-medical issues. The fact is, if we could pull together our re- sources in such a coherent and ef- fective way that we could make good things happen for ventilator- dependent children, then we could do good things for many, many other disabled and handicapped children and adults. You remember the words of Cassius to Brutus in Shakespeare's Julius Caesar. "The fault, dear Brutus, is not in our stars but in ourselves, that we are under- lings." We sooften defer tocircum- stance, as the Romans deferred to Caesar, and we become, in effect, the "underlings" of circumstance. That need not always be so. It is not written anywhere in the stars that disabled children, attached to machinery for the vital air of life, must go without any other help from their society. Nor is it written anywhere that other disabled and handicapped individuals, very young ones toveryoldones, should be left outside the pale of assis- tance. That's just not the way we want our society to be. So, with this project, addressing the needs of ventilator-dependent children and their families, we declared our intention to blame the declared our intention to blame the stars no longer, but rather to look stars no longer, but rather to look to ourselves for what could be to ourselves for what could be done. And I can tell you it worked. done. And I can tell you it worked. At the close of last December's At the close of last December's workshop, we affirmed our com- workshop, we affirmed our com- mitment to, turn into reality as mitment to, turn into reality as many of the workshop recommen- many of the workshop recommen- dations as possible. With us today dations as possible. With us today are a number of the same people are a number of the same people . . C. Everett Koop who had taken part in last year's program. And they have stories to tell us - stories of hope, profes- sionalism, character, and I'm pleased to say, of success. As an introduction to their con- tributions, let me briefly report on the status of the seven recom- mendations and how we're doing on them. As the top of the list last year was the need to get as clear a definition of the problem as we could. And by that, I don't mean to narrow down the problem and thus, in a sense, trivialize many of its aspects - quite the reverse. It was felt that the public as well as the medical and social service pro- fessions needed to appreciate the scope of the problem of care for handicapped children and their families. We did not feel - and rightly so -that such appreciation was current. I believe that the publication and distribution of the proceedings of the December workshop has contributed to this task of clarify- ing what the problem is. The work- shop report does provide a com- mon base of understanding for all persons with an interest in this problem. Stimulated by this first recom- mendation regarding the defini- tion of the problem, the Crippled Children's Program at the Univer-. sity of Illinois surveyed the status of ventilator therapy and support among, children in Illinois. This makes Illinois the second state to obtain this kind of information. Pennsylvania was the first and has been updating its information base. Asimilarstudywasalsobegunat the University of California at San Francisco. The health policy pro- gram at the university is investi- gating, for example, the increase in .the last 25 years of the number of days of limited activity among children. ' Additional efforts have included a "National Conference on Chronic Illnesses in Children," conducted last April by Vanderbilt University. This conference has helped us in a number of ways, but I'll mention in particular the attention it paid to the issue of research priorities regarding chronic illness among children. Then, just this past October in Kalamazoo, Ml, a three-day "ln- vitational Symposium on Ven- tilator-Dependent Children" was held. I understand it was quite a success. A full report of that sym- posium will soon be published in Pediatrics magazine, and I urge you all to watch for it. The Kalama- zoo Symposium dealt with a num- "IfweeouIdpullto~etherourresources~~ thatwecouldmake@odthin@happenforventiXatmr- dependent&.ildren,thenwecoulddogoodtMn@formany, m~yotherdisabledatldhatidicapped~~~narrd~~" ber of issues such as the need for better data, the problems associ- atedwiththefinancingofcarefrom both public and private sources, the research needs of this field, and the major task of education that has to be done among parents, patients, health and social service professionals, and our communi- ties in general. The secona recommendation of the workshop last December con- cerned the need for model stan- dards. The workshop participants felt we needed tospend much more time and effort in developing stan- dards that reflected the needs of the family as well as the concern for the quality of life of each dis- abled child. To get this work started, our division of Maternal and Child Health awarded two grants for special projects of regional and national significance now known as "Sprans" grants. One of these is the project at the University of Iowa. It will explore the relation- ships that develop between dis- abled children and the health pro- fessionals who take care of them. The other, at the University of Michigan, is looking at standards of care that may be applied to re- gionalized community health ser- vices for children with diabetes. Such a regionalized support net- work would involve health and social service professionals, pri- vate professional and voluntary organizations, and local and state governmental agencies. It's an ambitious and very worthwhile project. And that brings up the third recommendation which was to develop regionalized systems of care for ventilator-dependent children. Three "Sprans" grants have been awarded for thedevelopment of regionalized systems that deal specifically with ventilator-depen- dent children. The accent is on ways to help move children out of institutional settings and getthem back home, or at least to a home- like setting. Naturally, the role played by effective community- based support systems is crucial. Six other "Sprans" grants have been awarded for thedevelopment of model systems to serve children with arthritis. In all, the Public Health Service has awarded close to $750,000 for the development of regionalized systems of care for disabled children. Among the most exciting efforts in this area is the contract awarded by the Office of Human Develop- ment Services to the John F. Ken- nedy Institute in Baltimore. What we hope to accomplish here is a model for a working nationwide referral network for the develop- mentally disabled. Using today's sophisticatedtechnology, itshould be possible for a developmentally disabled individual, or the physi- cian, parents, or care-takers of such an individual, to query a sin- gle source for information about that disability and pinpointthe best or most appropriate places to get help for the person so disabled - help anywhere in the country or possibly even the world. This is no longer the "blue-sky" thinking of visionaries. We know it can be done because it is being >done here and there, albeit in piece-meal fashion. But we lookto the Kennedy Institute to pull some of these things together. Under the terms of this award, the strong features of two impor- tant information systems are to be combined and regionalized. One is a data retrieval system for thepar- titular use of practicing physi- cians, and the other is accessible by the general public. The database for the physician- oriented system was developed by the Kennedy Institute in Baltimore, using data supplied by the 38 university-affiliated facilities around the country. As a matter of fact the American Medical Associ- ation itself has a contract with Kennedy to bring the institute's data in as the fifth offering of the AMA's Nationwide Medical In- formation Network, or "Minet." !t isavailabletoevery"Minet"sub- scriber who has a desk-top com- puter and a telephone. This enterprise nicely pulls to- gether government, the private non-profit sector, and organized medicine - in this case, the AMA -to make information available to physicians concerning access to specialized care for their patients and the presence of community support services. The other and more consumer- oriented data system is now func- tioning out of the University of South Carolina to benefit citizens of that state. The system carries information on access to care and community support services with- in the state. However, any indi- vidual or family member can get into the system merely by dialing a toll free "800" number. It isn't open only to physicians, for ex- "Iamsetth@asapersonaEobjectSvetheneed ts~keeptraekofal.lde~elopmentsinthefinaneingofeareso thatthepoterrtialforitrm edsupportisfidlyreaHzedand e~e~~~dwhorrsedscarewlllgeti~~ ample. #The Kennedy Institute hasanex- cellent concept of just how such a network will function. By means of the Kennedy Award, we hope to expand the South Carolina model to cover all the states in federal Region IV, and they are, in addi'- tion to South Carolina, Alabama, Florida, Georgia, Kentucky, Mis- sissippi, North Carolina, and Ten- nessee. If that works - and I am very optimistic that it will -then the next step is to "go national" as it were, and thus makeavailable to all our citizens the best infor- mation and the most appropriate resources relative to handicapping conditions. I'd like to add one additional point. The Kennedy Grant is for $95,000. It is probably thegreatest bargain today in the entire field of health care and social service R & D. But it also illustrates that the size of the problem may not al- ways determine the costliness of the solution. As professionals in this field, we need to keep our minds open to what can be done and then pay what's necessary. I agree that such a sentiment is easier to say than to live, and for that reason, we have been moving on thefourthrecommendation,the one that deals with the financing of care for children with disabili- ties. Last May, we held another kind of workshop in Washington, D.C. on this problem. The cost of care is an important and continuing concern of the ad- ministration. I can tell you that the May workshop and a subsequent meeting in June with officials of the Health Care Financing Admin- istration have served to throw some light on more and better ways - within existing law and regulation - to help pay for more and better service to handicapped children. But the problem will not go away with the conduct of one workshop or the scheduling of one meeting. For that reason, I am setting as a personal objective the needtokeep track of all developments in the fi- nancing of care so that the poten- tial for increased support is fully realized and every child who needs care will get it. I knowthat isclearly the feeling here in our host state of Missouri, and I want to recog- . nize the leadership given to this complex issue by Governor Bond. Three other recommendations are worth mentioning, although I would rather not take the time to comment on them right now. They are: Identifying areas of po- tential abuse. That is, controlling costs, eliminating duplicative ser- vices, monitoring care according to model standards, and so on. Another isincorporatingprinciples of care for children with disabili- ties into training programs for health professionals and parents which is a straightforward enough recommendation. I can report that an Ad Hoc Committee dedicated to following up this training recom- mendation met last June, with representation from across a broad spectrum of health, social service and educational specialties. The seventh recommendation from our first workshop has to do with supporting research in the care of children with disabilities. The Vanderbilt study that I men- tioned earlier, has been helpful in giving us some direction in our research strategy. I hope you feel as good as I do about this record of achievement over the past 12 months. It does demonstrate that concerned citi- zens - health and social service' professionals, government offi- cials, and lay citizens -can focus their inter&&s and energies on a particular issue and--make a dif- ference in the outcome of the public debate, and that disabled children and adults will benefit. In these remarks I have mea- sured progressaccordingtowhat's been accomplished on the recom- mendations of last year's work- shop. But many other things have happened over the past year, and 1 would be remiss if I did not recog- nize that. In fact, I would like to pay special attention to an event that took'place in Washington, D.C. on November 29. On that day, representatives of nine national organizations came together at a press conference. They convened to announce their agreement on a joint statement entitled, "Principles of Treatment. of Disabled Infants." The nine par- ticipants included: 0 The American Academy of Pedi- atrics 0 The American Association of University-Affiliated Programs 0 The American Association of Mental Deficiency 0 The American Coalition of Citi- zens with Disabilities 0 The Association for the Severely Handicapped 0 The National Association of Children's Hospitals and Related Institutions 0 The Association for Retarded Citizens' - United States 0 The National Down's Syndrome Congress 0 The Spina Bifada Association of America Thefirststatementoftheirstate- ment reflects a great deal of social, legal, and medical history of the past few decades. It says, "Dis- crimination of anytype against any individual with a disabilityjdis- abilities, regardless of the nature or severity of the disability, is mor- ally and legally indefensible." The statement goes on to high- light the "need for information" which will "improve decision- making about disabled individuals, especially newborns." Medical care and the role of both govern- ment and the community are also dealt with in this statement. If you have not read it, I urge you to get a copy by writing directly to any of the nine signatories. At the beginning of this year, I doubt that morethantwoorthree of these nine groups could have agreed on such a broad statement, although they all believe deeply in the issues as well as in the need to keep moving forward. As the debate over the "Baby Doe" cases unfolded, I think the need for ac- commodation and consensus be- came increasingly clear to every- one. Yes, principles are at stake, but they are not at risk. Events have made this past year both hectic and crowded, but it has been a gratifying year as well. J've not been gone that long from the Children's Hospital of Phila- delphia that I've forgotten the enormous personal and family problems faced by a number of my former patients - iittle children. who had to be hooked up to a ven- tilator to get through the first few months of life with a disability. So the hard work of the past year does have its very precious re- wards. More children and more adults are going to get a better break in life, as a result of vvhat we've accomplished and what we' intend to accomplish. It seems to me that getting deeply involved in this kind- of issue is precisely what an office such as mine ought todo-orelse-whatacesurgeon Generals for? 0 The Missouri Waiver: A Means Of Decreasing Costs And Improvi% Health Care We in Missouri are no strangers to the idea of home andcommunity based services. Last year we worked for and signed legislation that will mark the beginning of a new era in providing for the needs of our frail elderly. This legislation provides for in-home and com- munity care for elderly persons who wish to stay in their homes and who can do so only if they re- ceive some very basic and very im- portant in-home services. I believe that we have proven in Missouri that `we can provide for a much betterqualityoflifeandatthesame time do so at savings. Likewise,weknowthatthereare children in our state who face very similar circumstances. As with the elderly, these children face a choice between the lifesaving care they find in an institution, or the love and warmth they so desper- ately need from their families in their own homes. Children with multiple and complex handicaps have a right to the best quality of life possible. Many of these chil- dren can realize the maximum in potential for health, education, self-fulfillment and self-support, only with extensive medical, phys- ical, social and psychological sup- port. Hospital intensive care units and nursing homes currently pro- vide the bulk of these services; but now we must find new ways to meet the needs of these children. Missouri's waiver project is de- signed to demonstrate the cost- effectiveness of placing these chil- dren, who currently must stay in costly institutions, back into their own homes and communities. Our goal is to provide them an oppor- tunity to grow and develop as nor- mally as possible in their own homes as members of their own families. I believe that home and community based services can allow these children this kind of growth and development, while providing significant cost savings. The Omnibus Budget Reconcil- iation Act approved by Congress in 1981, accelerated the transfer of fiscal and managerial responsibili- ties for health programs from the federal government to the state. ThisallowstheSecretaryoftheDe- partment of Health and Human Services to approve, bywaiver, any state plan that includes home and community based servicesas med- ical assistance. Missouri's waiver was proposed under these guide- lines and had been sent to Secre- tary Heckler. We expect a positive response from the department in the very near future. The second objective is even more important than the cost fac- tor. Certainly we expect, and we think we can demonstrate, the proj- ect will be cost-effective. But most important of all, thewaivercanand will improve the quality of life for children who can be returned to their homes. By expanding the number and scope of servicescov- ered in a home based setting, chil- dren can be discharged earlier and treated in much more comfortable and more familiar surroundings. As a result, children will be re- united with their families, and in many cases, recovery time can be shortened as their quality of life improves. As the Surgeon General pointed out, very often children in hospitals may encounter other diseases and infections, but when they go back to their homes they are in an en- vironment in which they can grow, not only because of the physical conditions, but because of the love and care that a family can give. The specific services that will be offered under the Missouri waiver will apply to needy children who will be eligible for Medicaid ser- vices. Some of these services are already covered under the state plan. But current limitations ren- der them inadequate for the exten- sive service requ irementsfor these children. With this waiver, the state will pay for the medical trans- portation for the children in need. For example, if the child needs to go back to the hospital, the state will pay for the ambulance. The state will also pay for the home- maker or chore services to help the family with homemaking services, medical equipment and supplies, physical therapy, and pharmacy costs. Christopher S. Bond These services represent a very sophisticated level of technology. Indeed, it's often called High Tech Home Health Care. They offer the essential life support systems these kids need to survive. They also include the highest level of skilled nursing care necessary to maintain the patient's quality of life. The concept behind the waiver was developed while working very closely with children's hospitals and medical professionals. Cer- tainly we in state government could not have done it on our own, and we owe thanks to a great many dedicated physicians and other health care professionals who helped us pull together the infor- mation and outline the standards wemustfollow.Withtheircombin- edefforts, wedevelopedtheprinci- ples and data which are contained in the waiver. We think the idea of a group approach is extremely im- portant, because the children and their families need the support of all care providers. Their combined efforts in bringing together the in- formation is essential if we are to identify the children needing these services, provide the care, and monitor their progress to the high- est achievement of their potential and welfare. The extensive array of services made availablethrough this waiver would enable the children to re- ceive quality care in their own homes. They extend not only to the child, but to the entire family unit. This is a very important aspect of the waiver because it recognizes that not only does the patient have special needs, but that the entire family also must cope with these responsibilities. The waiver alone, however, does not make all of this happen. Many other services are needed if the programs are to be successful. We must have support from the medical community in- cluding hospitals, physicians, home health agencies, medical equipment providers and a whole host of medical personnel, as they try to adapt to the changed life- style that accompanies the pres- ence of a handicapped child in the home. Studies have shown that fami- lies of handicapped children appear to be particularly vulnerable to the experience of stress. In fact, in some cases, this stress factor is so great that some families have felt that they have had no choice but to seek institutional care fortheir children. As a result, we must find new methods of returning these chil- dren to their own homes, which will alleviate the stress as much as possible. We believe and expect this is precisely what the Missouri waiver will do. In addition, as I indicated earlier, the waiver will be a cost-effective mechanism for delivering alterna- tive sources of care to these chilr dren. Implementation of the waiver provisions will save approximately $3500 per child over a year's time. This translates into savings for the taxpayer, while clients are provid- ed better services more efficiently in their home surroundings. We speak of the waiver of being the magic instrument which will save money and ensure quality. Obviously, it's a start, and when you're dealing with government, you're going to have paperwork. Still, it is what this paperwork rep- resents that is important. It repre- sents a unified approach for chil- dren and their parents to be suc- cessfully reunited so that each child can reach his or her full po- tential in an environment most conducive to recovery. Without the expertise of the physician, the medical needs of the child cannot be totally identified. Without the case manager, the various essen- tialone-on-onesupporttothechild and the family would be missing. Without the support and coopera- tion of the service providers, the entire program would not be pos- sible. It's through their knowledge and care that these children are able to be treated in their homes. And obviously, without the care, love and understanding of the par- ents, these children would not even have a small hope of sucess- fully recovering, going on to lead fulfilling lives. It's this unity of purpose that makes this program a success. When all the concerned parents are striving for a common objec- tive, many worthwhile goals can be obtained. I believe the goals contained in Missouri'swaiver are very humane and certainly with your continued efforts and help they are attainable and they will be obtained. 0 It is a privilege to be here with so many persons dedicated to home care services. I hope that we will be able to make history repeat it- self. I hope that by directing atten- tion to ventilator-dependent per- sons, all disabled persons will ben- efitinthesamewaythattheearlier nationwide systems of home care services benefited all of them. That system, which existed from 1953 to 1959, freed hundreds and hundreds of ventilator-dependent polio survivors from custodial care in hospitals - freed them to live self-directed and productive lives in their communities for 30 years. That system was the genesis of the independent living movement. Those polio survivors have been the role models of the spinal cord injured and all other severely dis- abled persons since the early 1950s. The lives of those polio sur- vivorsprovethevalueof homecare services. I was directly involved with the system because my volunteering started in 1949 and coincided with the development of the regional respiratory polio centers which created that home care system. The centers were developed by the National Foundation for Infantile Paralysis to reduce the costly custodial care of 400 ventilator- dependent polio survivors of for- merepidemicswhowerescattered across the country in hundreds of hospitals. Sixteen regional centers were established at medical school/teaching hospitals to ac- cept groups of thosechronicventi- latory patients and to develop a positive approach to their care. They were established just in time for the very severe polio epi- demics of the early 1950s which filled all the 16 centers. Since no one had had experience with such numbers of seriously disabled per- sons on ventilators, the centers were a team learning experience for everyone. The patients and their families were important members of that learning team from the very beginning. The cen- ters had weekly patient-staff con- ferences, whichwerethekeytothe integration of the program. Here, all of the services working with the patient met to discuss with the pa- tient his or her present status, treatment plan, anticipated goals, and time factors. The first organized home care system was created by Dr. John E. Affeldt, who was the medical dir- ector at Ranch0 Los Amigos Hospi- tal in Los Angeles County in 1953. At that time, Ranch0 had the larg- est number of patients in thecoun- try - 158 who were ventilator-de- pendent. When Los Angeles County real- ized that these long-term patients were unnecessarily occupying s37/day hospital beds when they could becaredforathomefors101 day with attendants, equipment maintenance, and other support- ing services, a home care program was set up and 152 went home. A semi-trailer, with a complete workshop, made the rounds reg- ularly - maintaining and repair- ing the ventilators. The hospital functioned as an information Ser- vice to the polio survivors and to their personal physicians -an al- most umbilical cord relationship. The transition from hospital to home was gradual and meticu- lously planned and scheduled. The staff made home evaluations and the necessary adaptations for ven- tilators and accessibility. The first visits were for hours, then a day, then overnight, then weekends, withemphasisontrainingthefam- ily and the disabled individuals in the use and maintenance of the ventilators and in assisting each one to resume his/her own place in the family and the community. At our center, the disabled indi- viduals signed out when they left for a trial visit and signed in when they returned. In the interval, they were on their own. At first, attendants were trained at the hospital. But it was soon found that attendants changed so often, it was a waste, and families and the disabled individuals were much better at training another person to take care of personal needs. Each disabled individual and the parents or the spouse had to be- come experts in medical, personal, and equipment needsand hadto be abletodelineatethoseneedstothe changing attendants or to whom- ever was at hand. The centers and their home care systems resulted in tremendous savings of money, and a greater de- gree of sulf-sufficiency and inde- pendence for ventilator-depen- dent peoplethan had been thought possible. Asof 1959, theNationalFounda- tion reported the following sav- ings: The average hospital time was cut from one year to seven months; home care costs were l/10 to l/4 of hospital care. As of January 1959, the Nation- al Foundation reported that there were 1,756 ventilator-dependent Polio Survivors in the United states. Of these, 1,271 were at home. The Foundation study esti- mated that 40% of those at home would have remained in custodial care for the rest of their lives if the center's service systems had not been the means of making the transition from hospital to home care. Unfortunately, the centers lasted less than a decade. The pro- grams became too costly for a vol- untary organization when the pub- lic lost interest in polio after the vaccine. By 1959, the National Foundation had to change its em- phasis from polio to birth defects, and to curtail the polio programs. After the centers and the atten- dant care programs stopped, the polio survivors scrounged on their own. Some found funds for atten- dants from welfare or churches or relatives. Others found foreign or other relatively inexpensive live- in attendants or part-timestudents or retired neighbors. Later, some moved to California, New York or one of the few other states with attendant care. Fortunately, there were no special segregated residences built for ventilator-users. They solved their problems as individ- uals, not as a group of ventilator- users. Remarkably few had to go to nursing homes or VA hospitals. Polio survivors have been among the founders and the leaders of the nationwide independent living centers, which are sources of in- formation on attendants. For at- tendant care is the linchpin of in- dependent living. Throughout its 25 years, the&- habilitation Gazette has been a proponent of home care and at- tendants and a force for indepen- dent living. It has documented the lives of severely disabled persons around the world and acted as an international clearinghouse on polio and ventilator dependency. (For a brochure on its informa- tion services and a list of the back issues, write to Gazette Interna- tional Networking Institute (GINI), 4502 Maryland Avenue, St. Louis, MO 63108(314)361-0475.) Among the ventilator-depen- dent readers who have recounted their family lives and their careers in the Gazette are attorneys, clergy, computer programmers, engineers, physicists, professors, physicians (who changed to such no-hands fields as radiology, dermatology, psychiatry and allergy), rehabilitation counselors, therapists, teachers, and writers. Their casual/careful approach to travel is typical of their adaptation to life with a ventilator. More than 40 ventilator-dependent persons fromaroundtheworldwereamong the439registrantsattheGazette's Second International Post-Polio Conference and Symposium on Living Independently with Severe Disability held here at this Shera- ton in May of last year. We expect even more at the third conference which will be here in May 1985. Many of the polio survivors have been ventilator-dependent since they were children. Some went to grade and high school by tutor or telephone. Others attended with their ventilators and then went on to college and graduate school. Some were disabled while they were students and others after they had married and hadchildren. One example, is an Indiana phy- sician who contracted polio in 1955, shortly before he graduated from medical school. He received his medical degree while he was still hospitalized. After rehabili- tation, he completed his internship and residency. He practices der- matology fulltime. He is married. and has two children. He usesoral positive pressure continuously by day and sleeps in an iron lung. He has traveled widely, including a recent trip to a medical meeting in hStralia. He rents or borrows an iron lung when he travels and he is work- ing on a portable lung so that he can travel extensively in Europe. Another example, a Minnesota adoption specialist, was disabled in 1950 at age 27. She and her husband, a psychologist, have adopted 13 children, most of them disabled. She uses a pneumobelt by day and a trach-connected ventilator at night. She isoneofthefewpoliosurvivorsinthe United States who uses a tracheostomy. Most of the tracheostomies that were per- formed at onset were later closed and other means of ventilation used. They include many permutations and combinations, such as: o Cuirass by day and rocking bed at night 0 Glossopharyngeal breathing by day and lung or positive pressure by night 0 Oral positive pressure by day and lung at night Our panel will share more personal ex- periences to emphasize the safety, econ- omy, and satisfaction of home care and to demonstrate the educational, vocational, and productive potential of severly disabled individuals, including those who have been ventilator-dependent for more than 30 years. Finally, a few observations based on al- most a lifetime of volunteering with per- sons who are severly disabled . . . The most important contributions of the service system created by the regional centers were: o The team approach that included the disabled persons and the family in the plan- ning o The positive attitude toward discharge home o The training of disabled persons to train attendants and to be experts in their own care o The treating of each disabled person asan individual. No group solutions. Nomini institutions. Each individual was seen as having the right to make decisions as to the way in which to lead one's life. This is absolutely fundamental to the dignity and integrity of each individual hu- man being, and includes the right to place one's self at risk and the right to make mis- takes - in other words -the right of per- sons with disabilities to live as do all people in society. 0 I'm only a representative of a much larger group, thoseof uswho require artificial breathing aids in order to live. My role here is to share a bit of my personal experience of 28 years using a breathing aid. We ventilator-dependent people are a groupof individuals each with our own unique solutions to our life situations. I contracted polio at age 19 on mysummerjob, which was running a horseback riding stable. This was following my first year on scholarship atYale. I spent 24 of the next 32 months in sixdif- ferent hospitals, including the National Foundation's Respira- tory Centers in Omaha and Chi- cago. Initially, I was totally depen- dent on the iron lung and nearly totally paralyzed. It took me five months to get out of the lung. I still have quadriplegic involve- ment, and use a motorized wheel- chair. Much of my breathing is still voluntary; that is, if I were to pass outorbecomeunconsciouslwould essentially stop breathing. I now use a rocking bed to sleep on at night. On trips such as this, I use a portable chest respirator and a chest shell. For the first six years, I didn't know how to gloss0 phar- yngeal, or "frog" breathe, so I car- ried a small positive pressure blower with me with a transformer in case I got tired or had to cough. If I needed to, I'd just plug into the nearest outlet to let the blower breathe for me. But "frog breathing" has really been a life saver for me and has made my life much simpler. With- out frog breathing I have a maxi- mum vital capacity of 35Occ's. but with frog breathing I have a maximum vital capacity of 2800~~`s. As you may know, frog breathing is a method of pushing, or "swal- lowing," mouthfuls of air with the tongue into the lungs, which then inflate a mouthful at a time. My wife brought a book home from work that showed me how to do it, and the first time I yelled at her she was delighted. My wife and I met when she was a student nurse at my third hospital, and we started dating later when I was in theChicagoRespira- tory Center. We have two children - Karen, 19, and Ken, 17. We've traveled as a family unit all over the country - from Florida and Maine to Texas and Colorado, usually driving, but sometimes flying. Lil and I spent our 1961 honeymoon in the Bahamaswhere her dad lived. When airlines wouldn't let me fly without a doc- tor's permission, we found a small island hopping boat that took us across the Gulf. Respiratory disabilities haven't prevented opportunities from pre- senting themselves in my life either. I attended college with the support of what was then the Division of Vocational Rehabilita- tion Services, and the March of 51 Dimes National Foundation. Then I received fellowship support which led to a PhD in counseling and rehabilitation psychology. Illinois DVR hired me to develop and direct their Residential Evaluation Cen- ter and Service. Currently, I'm associate professor in human development counseling at Sanga- mon. State University. (The vice president's comment on my em- ployment interview was, "I guess it's what you have to say, not how loud you say it, that's im- portant.") Although we haven't gotten rich, I have paid more than $70,000 in personal income taxes back into the economy since 1965. One of the ironies of my life, which I think has implications for this conference, stemsfrom mybe- ing turned down for rehabilitation services by an Illinois DVR coun- selor in 1957 because I was too severely disabled to benefit. The irony in that is that currently I'm appointed by Illinois Governor Thompson, as chairman of that state agency's Advisor's Council. Illinois and rehabilitation have come a long way. Important factors in living my life with a disability included: 1) good medical care and planning in the early stages of recovery, especially by the National Foundation of Res- piratory Centers; 2) ongoing sup- port and respiratory equipment, provided, again, by the National Foundation and Life Care Systems; 3) an effective social support sys- tem, including first, my wife and family, and then of course, friends; and 4) an opportunity to live in the community as anybody elsewhere I can have control of my own life. The essential lesson to learn from that counselor 25 years ago is: Don't let your perception of the severity of a young person's disability today limit his or her potential for tomorrow. byCRanckE?rame Since we are talking about waivers, I think it might be helpful to explain what a waiver means to those of us who have been living under spend-downs for so long. It means that the additional burden of financial disaster isn't added to the already heavy load of dealing with adisablingcondition. It means that the family who spends nearly allitstimecaringforachildathome for free doesn't have to pay addi- tional penalties for the privilege of doing so. It means that a family of five can keep more than $436 per month for their own expenses. It means siblings in the family can continue developing their own tal- ents like piano lessons and college educations with less resentment toward the disabled brother or sis- ter. Waivers also make the state- ment that finally the family is rec- ognized as part of the home care process. It doesn't change atti- tudes in one fell swoop, but it is one step in getting rid of the con- cept that when the child is in the hospital, the responsibility is all on the hospital. And if the child is ta- ken home, the hospital relinquish- es all care and the responsibility is all on the parents -an either, "We do it," or "You do it," attitude. Home care needs to be a team, effort. We have been caring for our child, Melissa, at home for three years without any help - 24 hours a day, seven days a week. The minuteshe entered a local hospital, we were hardly allowed to touch her, much less convince them that turning her head from one side to the other during suctioning would help the catheter go to each lung more eas- ily. A half hour earlier we had re- vived her from respiratory arrest using oxygen and a rouche bag, and suddenly we were excluded from her care. No team work. Insurance companies foster the separation by paying for hospital care, but by being reluctant to pay for home care, no matter how healthy the patients become at home. Is this true with everyone involved? Of course not. The fact that there are families here with children at home proves that there are people from all areas involved who've worked cooperatively to re- solve these problems. Never- theless, to have something likethe waiver finally say, "We recognize your contribution and are willing to do something about it," is very significant to us. But there is still work to be done. At present only 10 states have made applications for the model waiver available to them. That leaves a lot of families in the other states without relief. Why is there such lack of cooperation? The in- consistency from state to state is very frustrating for families who are trying to get help. Hospitals need to develop more follow-up programs once the pa- tient is home. Yes, there is still work to be done. But the benefitsof alternative care are worth the efforts we put into overcoming these problems. The patients are healthier, costs are reduced, fam- ilies have a better chance at being families and life becomes more than just existence. Melissa has been in the hospital, and Melissa has been home. And, for Melissa and her family, home is better. 0 After I became disabled in 1959, I moved from my house intoa nurs- ing home because I didn't realize 1 could live independently. I knew I didn't want to spend the rest of my life in a nursing home - I wanted to contribute to the community. Then I began to watch other dis- abled people going through some of the same problems I was going through, and I wanted to resolve the situation. Some disabled individuals in Berkeley, CA, and in Massaehu- setts formed organizations which dealt with the "independent liv- ing" concept. I visited the group in California to see whattheywere doing and came back to St. Louis to look into the possibility of form- ing a group of our own. Although things move a little slower in Mis- souri than in California, I began to see disabled persons dealing with their own problems. I thought if the concept worked in Missouri, it could work anywhere in this country. Independent living evolves when disabled personsrealizethey need physical or personal assis- tance, and they pool their profes- sional backgrounds and personal experiences to form a base for action. I lived in a nursing home only because I needed physical and financial support. I figured the financial support was there if I could only find the physical as- sistance. I knew my own needs and physical limitations. One of the main focuses of independent living is to develop a good atten- dant program. It seems to be one of our biggest problems. When a dis- abled individual needs attendant services and comes into an inde- pendent living center for that sup- port, he or she can learn from other people's experiences. They share problems with others and get peer support. Role modeling also plays an im- portant part of the independent living program. That is when an individual can come to the center and observe other disabled per- sons going on with their lives in a natural and normal way. They talk about how they're going to mow their lawns, theirfam'ilies, andwho will do the shopping. .The visitors develop confidence because they figure if others can live indepen- dently, they can, too. The independent living concept is very important to the entire re- habilitation process because dis- abled individuals are becoming a part of that rehabilitation process at a professional level. We need to realize that disabled individuals play a large advocacy role in mak- ing sure that favorable legisiation is passed concerning their needs. We've seen a lot of progress in the area of the Rehabilitation Act and rehabilitation programs, but the only way we can continue to grow is to expand the involvement of disabled persons in the move- ment. Health care professionals and the handicapped need to work hand-in-hand to accomplish some of our goals. 0 Persistence AndGood Education Pays Off For Disabled byDeborahPhWips I come from a long line of non- conformists - my mother's heart is on the wrong side, and I have an undiagnosed disability. When my parents discovered that my dis- ability was developing (I lost the use of my arms when I was 7 years old), they, as non-conformists do, disregarded the advice of the ex- perts and kept me in the parochial school where I was enrolled and never treated me differently from anyone else. The important thing to remem- ber about dealing with people who have disabilities is that there are many resources in the community from which to get help. My office happens to be one, and there are similar commissioners' offices in most of the major metropolitan areas. I admit there are only a few female commissioners and direc- tors of these offices, but as women with disabilities, that just means we have a double problem to over- come. Our office is part of the metro- politancitygovernment,andwe've been in existence for five years - not as part of the mayor's office, but as part of the Department of Human Services and the Depart- ment of Welfare. Our job is two- fold: One is to serve disabled peo- ple and the other is to serve the city of St. Louis. We have the in- teresting position of being a non- political body whose primaryfunc- tion for city government is to ad- vise and confer. Anyone who works with archi- tectsorengineersknowsthatthere is absolutely nothing you can tell them aboutaccessibility. Wecame into some money two years ago, and the chief architect for the city decided to make City Hall accessi- ble. He contacted me for my input, and I suggested he make one set of the public bathrooms accessible and that he lower the telephones - things like that. There are also about one thousand steps just to get to the front door of the build- ing. We've convinced our board of public service togive usthe money, so hopefully the Civil Courts build- ing will be accessible for mobility impaired people. This is the kind of work we do, and this is the kind of resource we try to be for organizations like Paraquad. We don't take the approach that everyone is alike. Our approach is to match the individual person to the resources that meet the needs of that person. You have to articulate your needs. It's very im- portant, especially in Missouri, to be persistent. It is very low in legislation for the disabled, and because of that, some of the met- ropolitan areas like St. Louis and Kansas City have been more progressive. When dealing with a metropolitan municipal part of government, you need to pre- sent your information in a con- cise way. It's persistence and perseverance that's kept us in business, and we're fortunate that the city considers us one of its priorities. I never went to a special school, and I don't feel cheated or warped from the experience. I've always had the fortunate luck to have got- ten a good education. Parents of disabled children need to realize that education is one way we can overcome and become part of the mainstream of society. Another way is to develop an excellent sense of humor. It's important to remember that even though a person has a dis- ability, it's exactly that, and that having a disability does not make us a homogenous group. Within-' our population is as much diversity as in any other population. And that's a good reason to have an office like mine and an organiza- tion like Paraquadtoworktogether to help meet some of the needs of disabled persons. 0 The issues we will discuss today are based on recent history -the world-wide polio epidemic of the 1950s which led to the develop- ment of new approaches to medi- cal technology*and health care or- ganization. The epidemic featured a severe form of polio that took the lives of countless children and adults, often in their most produc- tive years. People died because of paralysis of their respiratory mus- cles. The realization of the need for artificial ventilation led to the development of the modern tech- niques of upper airway manage- ment and mechanical ventilation such as tracheostomy and positive pressure ventilation. This new technology resulted in a reduction of mortaIityfromrespiratoryfaiIure from 90% to 20%; however, many of the survivors remained depen- dent on ventilatory assistance - some for a lifetime. The comprehensive medical needs of the polio survivors re- quired an interdisciplinary health care team of physicians and allied health personnel. A new approach to the medical treatment of chronic illness and long-term disability was developed. This medical chal- lenge created the basis for the con- cepts of health care including ad- ministration, clinical methodology and research as featured in the system of specialized respiratory (polio) care centers. One success of these special- ized centers resulted from re- search: The discovery of the polio vaccine. This discovery in 1956 of an effective preventative measure against polio all but eliminatedone of the medical scourges of all time. But the "polio story" did not end there for the survivors. Some had to remain in institutions for un- determined periods of time be- cause they depended on breathing machines and had nowhere else to go. These were the first ventilator- dependent children and adults. They discovered new approach- es to their care and answers to their needs which were major di- mensions of "self-help." Working with professionals, families,vol- unteer organizations and friends, they created outreaches from the regional polio centers such as home care and other community- based living alternatives and sup- port services. The centers and home care resulted in a tremen- dous financial savings and a greater degree of independence and self- sufficiency than was ever dreamed possible for people so severely disabled. Since the creation of modern critical care and rehabilitation medicine from the polio experi- ence, countless people with seri- ous illnesses have survived who would have died years ago. Some of these survivors now constitute a new population of people depen- dent upon life-supportive tech- nology. Examples include high spinal cord injury, severe muscu- lar dystrophy, and a varietyofother neurologic, muscular and pulmo- nary diseases that previously re- sulted in early death. These sur- vivors must needlessly and inap- propriately remain in institutions at enormous cost in economic and human terms because they have no alternatives. This is only part of the current crisis in health care delivery. Ex- cessive health care costs have mostly exceeded our ability to pay. In 1980, the health sector claimed 13C of every non-defense federal budget dollar. The national health expenditures approximated $70 billion in 1970 and $247 billion in 1980. Projected costs for 1990 are over $1 trillion! In 1970, national expenditures accounted for 7.2% of expanding gross national prod- uct and, in 1990, it is projected to account for 15%. Our medical reimbursement system is set up to pay for all acute care costs, but it is not designed for financing home care or other suitable alternatives. Unless we design better operational systems and more adaptable reimburse- ment mechanisms, we face the danger of curtailment of services and a resultant decline in the qual- ity of life (or even survival)of many disabled people. In the United States, the possi- bility for home care or alternatives for chronic respiratory disabled children and adults are limited to a few demonstrations. For adults, existing facilities include respira- tory rehabilitation centers (Gold- water Memorial Hospital Howard A. Rush Respiratory Rehabilitation Center in New York, The Institute of Research and Rehabilitation in Houston, TX, and Ranchos Los Amigos in Downey, CA) which evolved from their polio experi- ence, some skilled nursing facili- ties without rehabilitation ser- vices, and scattered home care ex- periences. Concerning children, home care demonstration projects have been implemented in Massa- chusetts, Texas, Pennsylvania, Illinois, and other states. A major problem exists, however, because we don't know where all of these children are or who isdealing with them. A need exists to document and register this information. I have been aware of the regional approach to ventilator-dependent persons in England and France. This year, I was given the oppor- tunity by the World Rehabilitation Fund to do a comprehensive study on these programs. The Interna- tional Exchange of Experts and In- formation Program has been funded by the National Institute of Handi- capped Research toacquireknowl- edge of exceptional programs, Practices, and policies in other industrialized nations to enhance the knowledge base of rehabilita- tion in the United States. I will now present a synopsis of my study, de- scribing the programs and giving their histories, analyzing opera- tional systems, and suggesting their benefits. The English solution -the "responaut program" The first program concerns "res- ponauts" who are ventilator-de- Allen 1. Goldberg pendent persons who are severely physically disabled and live inde- pendently in England. They coined the term "responauts"themselves because, like the astronauts, they ventured into the unknown. The original responautswerepoliosur- vivors. In 1965, some of these people stayed at home without any established system of services and some remained in polio centers which were closing. At the same time, the acute intensive care unit just developed by Goeffrey Spencer at St. Thomas' Hospital, had long-term ventila- tor-dependent survivors. To serve both populations, the Phipps Res- piratory Unit (PRU) at the South Western Hospital was created. From this location the responaut program evolved as an organized series of services available to anyone in England who depends upon prolonged mechanical ven- tilation or who has a respiratory disabillity that requires referral to Dr. Spencer. The establishment was a collaborative effort among the health care professionals, pa- tients and families, hospital ad- ministrators, and government authorities. The responauts initi- ated public, private and govern- ment involvement which resulted in "Responaut `Study," a major success of self-help. The "Responaut Program" con- sists of the following services: o Comprehensive medical/reha- bilitation care in the PRU o Planning for a safe discharge to home or a variety of communityal- ternat ives 0 Home care, either provided by one of 17 PRU attendant staff, who live in the home of responauts, or community-based caregivers, pro- vided by a government agency or government fund o Home maintenance service of all respiratory, technical and per- sonal needs on a regular and emer- gency basis The PRU remains the base unit because this arrangement pro- vides security for the patients, professionals, and administrators, and guarantees standards of care and quality-assurance. It also pro- vides the most coordinated opera- tional basis as well as a medico- legal basis for the protection of all involved parties. The PRU is where patients are first admitted for evaluation, stabilization, and eventual discharge. After the 1973 Responaut Research Project, all participants could go home. This allowed the PRU to function as a short term unit for more acute ill- nesses, minor adjustments in pre- scriptions and outpatient assess- ments. The hospital patient length of stay was 568 days in 1968; 18 days in 1975; and 11.9 days in 1983. Today, even though the res- ponauts are home, they are still the chargeof St. Thomas' Hospital. The PRU team leaderswhich serve the patients include a physician, nurse, physical (respiratory) ther- apist, and social worker. The cur- rent health care/social legislation in England provides a complex re- imbursement policy, partly statu- tory - partly discretionary. The social worker coordinates a finan- cial program for each responaut among a variety of options from local and health authorities. To complement home care, the PRU home maintenance service (which includes three medical technicians, three service ve- hicles, a hospital-based workshop and inventory of major equipment and supplies) coordinates a very personal service from the PRU. The service does routine maintenance of the equipment and minor/major emergency replacement. Since its onset, 411 patients have been served by the "Responaut Pro- gram;" as of June 1983, 223 per- sons were benefitting from it. Because not all responauts have familiestogohometo,theyrequire other options and services in order to live somewhat independently in the community. These services were not created specifically to meet the needs of the responauts; however, they take advantage of the existing resourcesdesignedfor other purposes. Examples include the Netley Holiday Home (Respite1 Care) and the Chailey Heritage Hospital and School (education and rehabilitation engineering). The financial basis of the respo- naut program is the original ar- rangement between St. Thomas' Hospital and the Department of Health and Social Security; legis- lation, which provides both statu- tory and discretionary funding; and supplemental funds from a variety of charities. The French approach -the regional association As in England, the solution for theventilator-dependent person in France evolved from the efforts of multiple concerned parties. These people looked for community op- tions for groups of polio survivors who faced no other choice but pro- longed institutionalization. The former polio centers in which they lived, evolved into intensive care and rehabilitation centers. The concept created was "ventilator assistance at home." Two not-for-profit organizations helped to implement the concept for the polio survivors. The Asso- ciationof MutualHelpforPolioand Handicapped People (ADEP) and the Association of the Lyon Region for the Fight Against Polio (ALLP) evolved into the "core"of the cost effective regional solutions for ventilator and oxygen dependent persons in the greater Paris and Lyon regions. Theyalsoformedthe base for a new national organiza- tion, the National Association for Home Care of Respiratory Insuf- ficiency (ANTADIR). This national organization deals with issues such as mass purchasing, national statistics and surveys, collabor- ative research, and information exchange. ADEP was initially created to improve hospital life and later developed as a means to send pa- tients home or on to independent living alternatives. It was created by and for the polio survivors who had to remain forever in the Ray- mond-Poincare Hospital, Gareches, France. It is now a multipurpose not-for-profit organization con- tracted to provide home ventila- tor services, community-based living alternatives for ventilator- dependent adults, and documen- tation of information for the dem- onstration of an effective self-help group which has expanded to help others. As ADEP grew to meet existing demands, it received re- quests from the government to serve as the model for develop- ment of other regional associa- tions and to develop a national or- ganization to deal with issues ap- propriately. Currently, ADEP serves over 650 persons. The services of ADEP are de- sicribed in a contract betweenthree major reimbursement agencies and ADEP. This arrangement is the basis of all negotiations with any other reimbursement resources. The prospective reimbursement package permits ADEP to provide the following services: @ Acquisition, delivery, installa- tion of a large variety of durable medical equipment @ Oxygen (tank/extractor) @ Provision of all required acces- sories @ Routine/emergency home maintenance service @ Required electrical modifica- tions for equipment/home @ Required installation of tele- phone @ Communication with medical resources (community, institu- tional); regional coordination of services/care @ Administration of the program (quality assurance) a Evaluation of the programs (ac- countability) ADEP Home Care Program is divided into four services: admis- sions, maintenance (technical service), medical social service, and administration. The admis- sions process creates all neces- sary documentation required for each new prescription of service such as medical and administra- tive records, requests for equip- ment loan or purchase, reimburse- ment, communication with third party sources, etc. They also con- tact an ADEP nurse who is initially involved with patient education and preparation for home. The home maintenance service consists of 10 persons including secretaries, staff, technician, in- ventory persons, and a driver. Eleven vehicles stand by, fully stocked and prepared to make ma- jor repairs. Six of the vehicles are radio-dispatched, making an emergency service possible by an on-call technician. All the tech- nicians are qualified in mechanics dnd/or electronics and have had on-the-job training. Preventive maintenance is provided on a bi- monthly basis. The service guar- antees a greaterqualityassurance, decreased risk, increased secur- ity and it reduces costs. The medical social service pro- vides medical evaluation and fol- low-up, supervised by two physi- cian specialists. These physicians also make home visits when re- quested by ADEP nurses or tech- nicians. The ADEP nurses visit the patient in the hospital to deter- mine what equipment is needed and to plan required inventory. The accounting and administra- tion of ADEP Assistance is cen- tralized with several designated administrative assistants and ac- countants who report to a director. The center keeps all records, sta- tistics and creates monthly ac- counts of all activities, equipment and patient status. This organized documentation of services facili- tates communication with the sources of third party payment. The founder and president of ADEP, Andre Dessertine, created the organization as a meansto help others help themselves and insti- tuted the philosophy which imple- ments: 0 Greatest possible degree of in- dependencecompatiblewithphys- ical status o Reinsertion into urban setting for a full opportunity for a social life 0 Medical security to degree re- quired by the medical condition ADEP emphasizes medical security to reassure medical per- sonnel, public authorities and the disabled person that alternatives to institutionalization were appro- priate. In special housing set up for the disabled (Foyer d'ADEP), each ventilator-dependent person has several methods to reach per- sonal care attendants or medical staff who are on call. The medical care is given by a combination of health care professionals and well trained, highly motivated personal caregivers. In 1964, the ADEP Documen- tation Center was established which stored information concern- ing the studies and experiments which aided the disabled. The center was officially established as an Information and Documen- tation Service in 1974, and cur- rently available to anyone con- cerned with issues related to dis- ability. Today the service receives over 100 French and other lan- guage periodicals from multiple sources. The information is sys- tematically classified according to defined themes. The center has also proven to be helpful in re- search. The other organization which exists in France, the ALLP (Lyon- naise Regional Association for the Fight Against Polio) is also a not- for-profit organization which co- ordinates the total program and services required by the ventila- tor-dependent persons in Lyonand the surrounding areas. It, too, as the services in London and Paris, originally served fhe polio survi- vors. DuriIngthepolioepidemicsofthe 195Os, the Croix-Rousse Hospital in Lyon was designated as the cen- ter of expertise for the manage- ment of acute respiratory failure. Care was provided in a polio unit: The Serviceof ProfessorSedallian. When the hospital reached capac- ity in the mid 1950s. itwasthought the ventilator-dependent patients might do better at home. A me- chanical device was developed (Vincent-Gandot) and the first pa- tient went home in September 1960. That person is still at home and is living a full life with his wife and family. In the first years of the program, the hospital staff volunteered their services. In 1961, the ALLP beg-an to send home non-polio ventila- tor-dependent patients. Later in 1967, the leaders of ALLP nego- tiated a contract with regional re- imbursement authorities who pro- vided `3 prospective payment of $5 per patient. Most recently, the ALLP has begun to serve oxygen- dependent persons at the request of the Regional Social Security. The original polio center is now a multidisciplinary adult ICU with an acute care and chronic respira- tory rehabilitation section, both under the direction of Professor Dominique Robert. It plays a major role in the preparation of patients, families and caregivers for the transition to home. The ALLP is located on the hos- pital grounds of the Croix-Rousse, adjacent to the Pavillion Paul Sedallion. The physicians deter- mine the standards of respiratory care and lend quality assurance to the program. Primary medical care is given by a local physician. The RN role is determined by the needs of the patient at home. The nurse understands the patient's status in each situation. The visiting nurse makes home visits where her role is to implement quality assurance, continuity of care and to evaluate all prob- lems. The medical technician has re- sponsibilityfor boththeequipment and the medical and psychological needs of the client. In addition to pre-scheduled routine mainte- nance visits, the technician is available at all timesfor emergency needs. These people are factory- trained and are responsible for the repair of all equipment. The services of the ALLP are spelled out in a contract which features categories for prospective reimbursement. The rate depends upon the need for ventilation, tracheostomy care, and oxygen, including the method of oxygen administration as well as the source. The prospective charges range .from $4/day to $22/day with a mean rate of $9/day. The contract spells out the specific objectives of the program, the criteria for the program, the daily prospective rate, the description of covered reasons for unavailability are that services and personnel, and the interrelationship of involved par- ties. It also specifies required doc- umentation and explains the role of an advisory committee. At- tached to the contract is a com- plete home ventilator care proto- col. Currently, ALLP serves over 450 persons. Another essential component of the successful transition from institution to home in the Lyon regional program is the interme- diary (secondary) center. It permits the fullest preparation and educa- tion of each ventilator-dependent person at a location with signifi- cant cost reduction. Of the three centers in the Lyon region, Belle- combe is the largest with a capac- ity of 130. The average length of stay at this transitional care center is 55 days, during which time the pa- tient is well-educated in his/her there is simply an inadequate number of available health care professionals, and those who are available, prefer to work indepen- dently at a higher rate. There are times, however, in the homewhen situations arise and the family must call in help. At these times, it is possible to have a new type of personal caregiver. These people may have two roles: 1) Domestic (housekeeping, feeding, and cook- ing); and 2) Health (physical care, personal hygiene). For chronic res- piratory patients, often the duties require medical expertise. The Association provides these care- givers with B-l 5 days training for this purpose. The "auxiliare de vie" as the caregivers are known, is a recent development in France. The posi- tion has just risen to a professional status by federal regulation. equipment and self-care. Despite the fact that the ALLP Developing an American existed, a few ventilator-depen- approach dent polio survivors remained for To help apply these programs years at the Croix-Rousse Hos- from England and France to the pital. As an alternative to pro- national-regional-local realities longed institutionalization, the in the United States, it is neces- ALLP followed the model of ADEP sary to look at the reasons why and created the Foyer d'ALLP. All these programs were successful. of thesurvivorsobtainededucation In England, charities play a but they could not earn an income strong advocacy and political role, or they lost their government and have a great impact on govern- benefits. However, they used their ment policies for the disabled, education in managing their lives Charities develop new services and their homes. and programs based upon demon- The ADEP and.ALLP do not pro- strated needs. Government and vide primary caregivers. In France, charities work together in the pro- it is impossible to have 24-hour cess of mutual cooperation. nursing surveillance; therefore, in France, all programs are coor- ventilator-dependent persons at dinated by not-for-profit voluntary home require a highly committed organizations (associations)which family to participate in care. The provide quality assurance, case- monitoring, and accountability, resulting in cost containment. They are small, flexible, permit- ting muttiple interdependent roles for members. It is also helpful to look at the evolution of these services and their reimbursement. In England, ail programs began with a leader, a small group of concerned people, and private money. Each had an initial success which captured the government leaders'attentiop and later ted to government support, commitment, and appropriations for the program. In France, thepro- grams evolved from successful initial demonstrations followed by negotiation with multiple reim- bursement resources. Once a pro- spective rate for defined services was established, the operation grew to meet expanding needs. The funding of England's home care services is supported with public funds based upon legisla- tion. Ventilators at home are pre- scribed by a physician and must be provided by law. Charities supple- ment costs not covered by public programs. All health care and per- sonal service expenditures are part of a finite allotment which must be divided among multiple competitive and worthwhile or- ganizations. France's funding is based mainly upon public monies. Reimburse- ment is distributed by agencies which represent a region and/or vocation. Multiple interest groups compete for a finite sum of health care funds, somewhat like the public/private health care financ- ing in the United States. The re- imbursement agencies have cho- sen to utilize the regional associa- is simple and reliable. Home ven- tion as responsible case-mana- tilators/respirators do not have to' gers. meet dictated standards and regu- The attitude toward disability in lations. The quality is assured by England seems to be one of con- the home-unit. Also, in both coun- cern,duetoadequatemediacover- tries, malpractice suits are less age, parliamentary discussion and likely because legal contingency effective advocacy by charities. fees are not incentives, and the This favorable awareness also services provided are quite per- exists in France due to similar sonai. reasons. In addition, France es- tablished an organization to deal The United States reality with important public policy issues The United States is larger geo- concerning disability. graphically and more complex What began as the "Responaut socially than England and France. Program" in a local area in England Uniform health care and personal grew to national scope due to the service delivery is far more of a expertise developed and the num- challenge. Services for the dis- ber of persons who required spe- abled are currently determined cial services. Programs in France politically more by state and local were designed to meet geographic, policy than by regional or federal political and economic realities. regulations or legislation. Quality As the demands for the service of care often is more a result of grew, a study was done which led social or economic class -or even to the creation of a national organi- chancel zation. There now existssome con- The economics of health care tern about regional/national role delivery are vastly different than definitions. during the past three decades. in both England and France, a During that period of post-war base unit of excellence (health economic boom, there was an care institution) guarantees a high enormous growth of the health standard of care. The base unit care system. There were vast qual- also serves as a facility for the itative and quantitative improve- stabilization of the patient, initial ments in the provision of health family education, training and care. This was only possible due preparation for home, and for to the nation's overall economic meeting subsequent health care well-being in the '60s and '70s. needs. Both English and French Much of this was spurred by the programs highlight personal, high comprehensive entitlement pro- quality home care surveillance grarns which permitted healthcare which guarantees competent and by ,s cost-reimbursement policy reliable preventive maintenance, with no limit in sight. All national emergency repair service, and opinion polls showed strong public communication to all involvedper- support for improving and expand- sons. ing health care during this period The equipment in both countries -at any cost. However, since the mid `70.5, we and expansion of services. At the cooperation of multiple involved have had a vastly different situa- same time, a huge private sector interests working together in part- tion. The nation itself experienced home care industry is preparing to nership (government, consumei, a deterioration of economic per- serve the disabled. it is estimated organitationaf,professionaI) `,;,:`. formance by indications such as in Naisbitt's book, Megatrends, o .All reimbursement issues `have slowed economic growth, con- that the growth of the home health simitar conflicts. The same issues tinued inflation, and reduced pur- care industry will be 20-fold over are within "government systems" chasing power of the consumer. the period from 1970- 1990. (finite allotments) as are in apri- Thiswasaccompaniedbyachange Major public policy decisions vate/pubiic system *I .;, in public mood. Manypeoplefound are about to be made concerning O-All good ptogra'ms must be&r~ it difficult to handle expenses of home health care. Up to now, pri- tiated in small scope with adefined routine health care. People be- vate and public reimbursement focus, They'must demonstrate came concerned about economic authorities have not yet developed their worth' :before growth and issues and wereopposed toa limit- or adapted mechanisms to meet government support. less increased spending on health the home care equipment and ser- o : Most programs can `adapt to care. At the same time, the public vice funding requirements. There meet multiple needs and. hence demanded the right of access to are gross inequalities based upon optimize available resources. appropriate services. the financial resources of various The current reality in the United There has been a real decline in social classes. All involved are States is that excessive health public spending for health care concerned about issues such as care,,costs have nearly exceeded and in methodsof reimbursement. quality-assurance and mafprac- our ability to pay. Furthermore, (Change from "Cost-reimburse- tice-liability, a major hidden cost they are no longer acceptable to ment" to fixed, pre-set payment of health care in America. Policy thirdpartypaymentsources, public determined by "diagnostic related experts appropriately wonder if policy experts, and the general groups," to "prospective pay- the trend to deinstitutionaiize wilt public. New'concepts and options merit," to "preferred provider or- lead to better health care at less are being considered including ganizations" who respond to "re- cost. home health care, increased con- quests for proposals.") Often these Throughout my study, I attempted sumer involvement, prospective systems do not have built-in flexi- to ascertain if there was appiica- reimbursement, and a wholistic bility required to adapt to unique bility of the English and French approach to weliness. All this de- solutions and rapidly changing models in the United States. I be- mands a reassessment of how conditions. lieve that reimbursement and ii- we as health care professionals Also philanthropic spending for ability are the major barriers to ptay our role to the ultimate bene- health care has been reduced. The developing appropriate, cost- fit of those we care about: Our private sector has responded to a effective, personal services for patients. "hidden tax shift"(moving the bur- severely-disabled persons. The English and French pro- den of reimbursement from public Although the major reimburse- grams have independently shown to private sources) with a retrench- ment systems for European oper- that the complex challenges of the ment, and a re-thinking of who, ating programs I observed are ventilator-dependent person can what and how they will reimburse public, there are certain elements be creatively faced and met. When present health care delivery and that make my observation abroad caring people join and find com- new proposed models. applicable to the United States: mon concernsfor mutual benefits, Hospitals, our major provider of 0 All good programs start pri- conflicting problems become op- care since the 7 96Os, now face an vately through charitable or volun- portunities for positive interaction. economic austerity which will tary organizations By the right process, solutions can limit new program development 0 All evolve with the patience and meet all needs. Health care institu- tions can be better utilized for their there are many organizations that appropriate mission, and the health care about people (religious ser- care professional's time can be vice organizations, and community better directed. Money can be based voluntary groups such as saved by utilizing motivated, less Rotary, Lions, Kiwanis , Veterans' expensive personnel whocanwork groups, etc.) and have "grass with qualified allied health per- roots" resources. Many such or- sonnel, and consumers can have ganizations search for new direc- a high quality, personal service tions and challenges. They can pro- which meets their needs because vide personal, local support. How- they have hadinputintothedksign. ever, the funding required is Third party payors can have quality beyond the capability of anyvolun- assurance and competent case tary organizations. The cost of management resulting in cost home care services is still high. containment while government Funding must be found from mul- officials can meet their political tipre sources, including public and agendas. Voluntary (not-for-prof- private sector monies which can be it) organizations can play an im- channeled responsibly by a welt- portant and worthwhile role of defined, well-coordinated re- social responsibility. imbursement process. Currently in the United States, Unless we design better opera- tional systems and reimbursement mechanisms, we face the danger of curtailment of services, denied health care, and the resultant de- cline in the quality of life, or even survival, of some disabled persons. Past demonstrations in America, and those' described in this report from abroad, have proven that a higher quality of care can be more appropriately provided in the fam- ily or another community option at a cost savings. We can provide bet- ter services for less money. The solutionsoftheproblemoftheven- tilator-dependent person will have far -reaching and universal bene- fits. Thesolutions can have appro- priate application to many other complex health care and societal problems we face today. o Home Care Samdards eesent Unique Medie&!lnd Legal Challenfije It was nearly 25 years ago that the American Medical Association (AMA) finally decided that jet travel was medically safe. I men- tion this curious fact only to under- score the amazing pace at which the process of technological inno- vation challenges the advance- ment of human health care. Nearly 15 years ago, severe birth defects such as when the baby's stomach organs are outside the body, had a 85% mortality rate. Today that rate is down to 5%. Ten years ago, spina bifida had a mortality rate of 90% - today the survival rate is 90%. People with complex and mul- tiple handicaps have the right to the best quality of life possible. This can be achieved only by pro- vidingthemwithmedicaf,physicaf, social and psychological care suf- ficient to help them realize their maximum potential for health, education and self-fulfillment. To realize these goals, economic bar- riers to health care are being re- moved by the federal government. As an example, the 1976 Social Security Amendment provides social security insurance for dis- abled children. Many of these pro- grams identify and provide ser- vices to crippled children because their health care costs are truly catastrophic. Since modern medical technol- ogy has increased thesurvivafrate of individuals with multiple and complex health care needs, the 1980s bring a real need to develop alternate methods of providing this health care. Institutional intan- She care units, where the bulk of these patients now receive their care, have provided an extremely high level of care, but have also been found to have two major drawbacks. First, for optimum growth and development, the individual needs to be in the loving environment of his home as a member of the fam- ily. Secondly, institutional care is an expensive method of health care. It has been shown recently that the same services can be pro- vided in the home with approxi- mately a 60% reduction in costs. As we all know, federal DRG (Diagnosis Related Group) regufa- tions recently became effective Oct. 1, 1983. DRGs restrict the limits of reim.bursement a hospital is entitled to receive for the care and services rendered to Medicare eligible patients. It has been pre- dicted strongly and repeatedly that thenumberofandsophisticationof services rendered in the home en- vironment will be dramatically in- creased as a direct result of DRGs and by the passage of Medicaid waivers for certain services. It seems clear that these two items are indicative of an increased awareness that high-tech services can be efficiently and safely ren- dered in the home environment. It is reasonable to predict that there will ultimately be a greater em- phasis by both state and federal governments as well as other re- imbursement mechanisms to en- courage such services in the home. Thus, home care professionalswill have to become cognizant of and willing to assume any and all in- creased and transferred liability risk associated with the rendition of services in the home. Until recently, ventilator-depen- dent children and adults have been cared for on an in-patient, in-hos- pital basis. Now sufficient tech- nology exists to permit a signf- icant number of ventilator patients to be cared for in their own home. By analogy then, it's possible to examine the various types of risks which health care personnel face in a hospital setting, and forecast the types of risks the home health care personnel should be willing and able to accept in the homecare setting. It's long been established that physicians, nurses and other allied health care personnel must adhere to certain standards of care or be held accountable if the pa- tient suffers injury or harm as a direct result of the providersfalling below that standard of care. Gen- erally speaking, that standard is known as that of a reasonable man - a standard by which a person is judged in accordance with what a reasonable person with similar training would have done under the same circumstances. By such a standard, the nurse, medical technician, or physician can be evaluated in his or her community by the standards that exist in that community. But this standard falls short of providing specific answers because it must, by its nature, be applied on a case-by-case basis. Establishing standards for the home care of ventilator-dependent patients presentsa unique medical and legal challenge. Consequent- ly, home health care professiona.fs should possess the requisite train- ing andeducationenabfingthemto properly deal specifically in the home environment. Monitoring, supervision, provision of medica- tion, observation and notation of important warning signs, patient charting, patient assistance, and timely summoning of physician assistance are all responsibilities that are present in the home set- ting. In theory, the duties and re- sponsibilities of treating ventila- tor-dependent patients in the home would be extremely similar to treating ventilator-dependent patients in a hospital setting. The legal liabilities associated there- with would also be quite similar. There are legal precedents that would adequately demonstrate that physicians and nurses and technicians have been success- fully sued for violating applicable standards of care. By way of iffus- tration only, health care profes- sionals have been found liable recently in the following situa- tions: 1. Failure of physical therapist to follow and adhere to the physi- cian's order. 2. Negligent administration of an enema and of failure to report timely to the attending physician. 3. Mislabeling, mishandling of a blood sample by a nurse. 4. Improper injection of medication by a nurse. 5. Insufficient number of nurses assisting a patient in walking to a restroom. These examples are drawn from the hospital environment but can be reasonably expected to occur in the patient's home. A more recent case occurred in Hawaii where a hospital was found to be negligent in failing to property monitor a child's post-operative tonsiffec- tomy. Specifically, it was found that the delay in discovering the child's respiratory and cardiac arrest was the result of failure to monitor on a "minute-by-minute basis." One can readily see from this example the clear analogy to the degree of care observation in monitoring that would likely ac- company ventilator-dependent cases in the home care setting. I do not believe that home care is unnecessarily risky or danger- ous. Home health care providers are well-advised, not only to con- sider, but also to evaluate and pre- pare for the potential liabilities that precedent has shown to exist. Whifeprovidingasaferandmore comfortable environment for the patient, there are manythings that home health care providers maydo to substantially minimize matprac- tice risks discussed earlier. Among these are the following: 0 Careful screening of potential employee credentials. o Increased emphasis on continu- ing education. 0 Keeping abreast of state-of-the- art technology. Malpractice cases are definitely moving in the direction of requir- ing physicians and nurses and other health care personnel to re- main current with the latest devel- opments in medical technology. A central focus of such cases is prompt, complete and accurate patient charting, and adequate nurse supervision. An important factor which will undoubtedly have legal ramifica- tions, although the cases are not yet present in the books, is an acknowledgment by home care professionals that the atmosphere of caring for ventilator-dependent persons in their own home may vary substantially from the tradi- tional in-hospital setting. Patients, their families, and their relatives may be more lenient about adher- ing to physician and nurse orders in the home. Once a health proto- col has been established, it will be absolutely critical for home care providers to assure strict compli- ance in spite of the attitude of the parents and families. Another important factor in pro- viding care for the ventifator-de- pendent persons in the home isthe social and psychological advan- tages. As a parent myself, I can readily envision that a child re- ceiving health care in the home would enjoy a better outlook on fife. This certainly tends to offset the incremental increased risk of health caredefiveryoutsidethein- stitutionaf setting. ft'smybefiefthatrecentdevefop- ments in medical technology per- mit health care p B rsonnef to take advantage of the psycho-social value associated with caring for a patient in the home setting. Eco- nomic incentives intended to fos- ter home care are now in place with the advent of Medicaid waiv- ers and prospective reimburse- ment plans. Legal liabilities and malpractice concerns are ever present, and present reasonable questions which must be addressed openly. The study and analysis of liabilities that have arisen in `the hospital setting, can be used to forecast home care legal risks. Such analysis permits the con- clusion that recent advancements in medical and communication technology, taken together with continuing education, substan- tially reduce the legal risks asso- ciated with home care. Physicians and nurses and other health care professionafsarequitecorrectthat the benefits of the home care set- ting far outweigh the incremental risk of legal liability. The consci- entious home care provider will be setting new standards for reason- able care in the community. These standards do not exist at the pres- ent time, but there is no reason to fear their development. There is no substitute for adequate training and for ongoing education. 0 Forthepastquarterofacentury,I have hadtheopportunitytocarefor children and adolescents who have serious, chronic, treatable disease, both as a pediatric endo- crinologist andasa medical admin- istrator. My definition of "serious, chronic, treatable disease" is this: Serious - Requiring a team of health care professionals Chronic - Of many years dura- tion; eg., three to a lifetime. Treatable - Including drugs, surgery and counseling Prognosis - Often not cured, but with therapy, patients look, feel, act better and become functional adults. Without therapy, manywill not function, nor will they survive. There are children in St. Louis with serious, chronic treatable diseases where I think the health care system is doing a reasonable job of meeting their needs. One ex- ample concerns a hemophiliac who is subject to recurrent episodes of serious bleeding requiring fre- quent transfusions and help from a health team of professionals. Now the patient's care, including intravenous therapy, is given at home by parents, patients and visiting nurses. The fiscal support includes the following: Depart- ment of Health, Education and Welfare - Great Plains Regional Dise Comprehensive Diagnostic and Treatment Center; Missouri Crip- pled Children's Services; Bi-State Hemophilia Society; Missouri He- mophilia Program; and the Illinois State Hemophilia Program. How- ever, the three organizations which absorb the cost are St. Louis Uni- versity Hospital, Cardinal Glennon Memorial Hospital for Children/ Sisters of St. Mary, and the St. Louis University School of Medicine. The second group of children I think are making progress are those with learning disabilities. These children are problematic in identification, classification and management. Their testing is very time consuming, requiring ap- proximately 20 hours of profes- sional time per patient. Subse- quent education and management plus re-evaluation are time con- suming also. In this state, as part of the ter- tiary care system, these children whose families have limited in- comes can be evaluated and helped via the local school system. Fiscal aid isprovidedthrough thestateof Missouri Regional Center, Mis- souri Crippled Children's Services, Missouri Medicaid, and Knights of Columbus. Again, absorbing the costs are Cardinal Glennon Me- morial and the St. Louis University School of Medicine. Forminganothergrouparethose children with cancer. They need many medications, much labora- tory re-evaluation, a full team of health care professionals and in some cases, major surgery and subsequent radiation. Generally these children are offered treat- ments on an ambulatory basis; however, there need to be periods of hospitalization occasionally. In these cases, the fiscal support comes from the Candlelighters, Leukemia Society, American Can- cer Society, Tricia Phillips Chil- dren's Cancer Fund, Cardinal Glennon Memorial/Sisters of St. Mary and St. Louis University School of Medicine. Another bright spot concerns the program for the mentally retarded adults. In the city of Cape Girar- deau there is a remarkable pro- gram for mentally retarded adults who are capable of working. In that program are sheltered workshops, supervised recreation, supervised independent living, and transpor- tation.Thefinancialsupportforthe program comes from the Social Security income of the individual client, contributions from the Knights of Columbus, Missouri Department of Mental Health, and United Way. These are all examples of pro- grams which offer some financial support for families who are medi- cally indigent. Children with other serious, chronic, treatable dis- eases are not so fortunate. There is no fiscal support for the med- ically indigent except for the gen- erosity of individual physicians and individual religious orders for the following: 1. Children with hypothalamic pituitary tumors 2. Babies and children who have been battered 3. Teenagers and young adults with complications of diabetes mellitus 4. Children with chronic inflam- matory disease of the bowel 5. The multiply handicapped 6. Children with asthma For some, virtually no fiscal as- sistance is available. This group encompasses teenagers with serious, chronic, emotional prob- lems. As we think about the homecare of ventilator-dependent children and adults, let us remember that they exemplify the problems of a large group of children, adoles- cents and adultswho haveserious, chronic, treatable diseases, but nevertheless, are individuals who can contribute to society and can enjoy their lives. Currently, many of these people receive less than optimal care because of inade- quacies in thefundingofthehealth care system and in the health care providers. The problem requires additional changes such as redi- rection of crippled children's funds from the categorical. Third-party payment for ambulatory care, home care, and psychological sup- port must be instituted. We needto make optimal health care a na- tionalpriorityandtoviewtheneeds of the medically indigent as a pri- ority as well as the needs of chil- dren. 0 Nebraska Stri-.-es To Care For ~Ventilahr-Dependent ChildrenAtHome As a medical director of Services for Crippled Children in Nebraska, I would like to educate you as to what services are available. May- be this will give us a springboard as to what other things can be ac- complished nationwide. Crippled Children's programs in Nebraska were expanded a great deal under the governorship of J.J. `Exon, who is now a senator. He and his wife were very, veryin- terested in chronically disabled children, and through his efforts, our budget was increased con- siderably and a lot of categories were included in our program which were not in the program be- fore. We have a unique position in Nebraska where all children who are provided any care under 94142 are coordinated through Services for Crippled Children. So, every child who is disabled in the state of Nebraska has a record in my office, whether they are eligible financially for aid from Crippled Children's or not. We are basically byDaleEbers,MD constituted to provide help for the medically indigentfamily-notthe indigent family. The medical costs of some of these diseases and con- ditions can be horrendous - you can run through thousands of dol- lars so fast you can't believe it. If the family or patient is Medicaid eligible, we ask Medicaid people to do the financing, and we do the case management. In that way, we havemoreuniformcontroloverthe quality of care that is delivered, regardless of where that delivery is made in the state. We hold the basic premise that all children should be cared for at home, or as close to home as pos- sible. That is probably a personal bias that I hope is reinforced in the state. We have enlarged the area of hyperalimentation. Hyperalimen- tation means there is a permanent central line into the cardiovascular system, which creates a great pos- sibility of infection. Eighty percent of the kids who are on a program for hyperalimentation have a short bowel syndrome or intractible diahrrea and are usually between 6 and 18 months of age. Dr. Van- derhoff, who trained at UCLA and CamebacktoNebraskaandwanted to get into this, came to me and asked if Crippled Children's could support this program in the hos- pital. We discussed the problem and decided we would have to find a way to do treatment at home. Vanderhoff has accomplished this. He developed protocol and he has a nurse who spends about a week teaching parents how to prepare the solutions for treatment. She then supports them at home by visiting or calling once a day for the first few weeks, and then vis- its once a week. Vanderhoff usu- ally sees them once a month. The program's been going on for about three years now, and this past year it cost s 100,DOO. If you would have had those kids in the hospital, we would have been spending in the range of half a million dollars. Obviously, that is a very cost ef- fective procedure. o Dale Ebers, MO, is medical director for Services for Crippled Children, State of Nebraska, in Lincoln, NE. critieauy Ill Newborns Require R? ecialB!reatment I would like to share some thoughts with you about a group of youngsters who are ventilator dependent. These are infants with chronic lung disease. By and large when you hear neonatologists talking about chronic lung disease, we are talking about broncho- pulmonary displasia (BPD). We be- lieve this is a laterogenic disease that results from the use of high concentrations of oxygen and from trauma to the lungs caused byven- tilation. Regardless of the causes, thesebabiesareourversionofven- tilator-dependent patients. I'd like to share with you the problems these babies create for us in neonatal intensivecare,some oftheproblemslthinkwecreatefor them. Then I would like to share a possible solution to some of these problems. In November, there were eight infants less that 12 months old re- ceiving care in Iowa hospitals be- cause they were ventilator de- pendent. Seven were housed at University Hospitals in Iowa City, andthreeothershadjustdiedwith- in the past several weeks. Pres- ently there are no Iowa infants receiving home ventilator care. There are some older children on ventilators, but not a large number, probably somewhere in the range of four to IO in the entire state. There are six infants with chronic lung disease that are home and re- quire supplemental oxygen and byIfermanA.Hein,blD another two that are housed at University Hospitals. To the best of my knowledge there are no Iowa infants receiving care in chronic care facilities because they are ventilator or oxygen dependent. The number of beds available to provide care for critically ill new- borns is a chronic problem in most neonatal intensive care units. I am not prepared to discuss why neonatal intensive care units have not expanded their capabilities to meet this need, but I must notethat financial matters, including the availability of nursing personnel, are important issues. Contrary to popular opinion, which is consis- tent with the hue and cry over ris- ing costs of medical care, many hospitals are not financially sol- vent. A large number of hospitals that provide tertiary neonatal in- tensive care are teaching institu- tions, and these institutions are experiencing severe financial con- straints. Accordingly, the hope for expanding facilities by these insti- tutions is not a reality in the near future. In the meantime, babies with chronic lung disease are occupy- ing beds two, four or six months in the neonatal intensive care units. Eventually the chronically ill ven- tilator-dependent infant is moved to another area of the hospital, usually to a pediatric intensive care unit or to an intermediate type of unit on a pediatric ward. The move is not based on the baby's or the infant's needs, but rather on the availability of a bed. The net effect of this type of uncontrolled transfer is fragmentation of care. Related tothis matter isthegen- eral issue of primary caregiversfor these infants. Most people would agree that as things evolve, the neonatologists are the ones who are and should be responsible for these babies. But once the baby leaves the NICU, this really isn't true in many instances. Becauseof the heavy workload of most neona- tologists, the logisticaltypeof prob- lem is a major one in trying to give care when the babies are scattered throughout the hospital. For ex- ample, in our hospital, once a baby leaves the NICU and goes to the pediatric ICU, it's a three-block walk. If the baby goes over to the intermediate level on one of our pediatric wards, it adds another two blocks. Logistically it gets to be a major problem, resulting in fragmentary care. In my exper- ience there really hasn't been an- other group of physicians that has leaped forward and said, "I'm sure willing and eager to take care of these kiddies with chronic lung disease." I guess I thought that pe- diatric pulmonologists would be first in line, but again, in our insti- tution that simply has not been the case. They are willing to consult if requested, but they are not avail- able to take over the primary care. The problems that infants with chronic lung disease present are complex and varied - respiratory, cardiovascular, nutritional, growth and development, surgical and many, many more. If we are go- ing to be able to provide home care for ventilator-dependent infants, it is important that coordination of hospital and community re- sources begin some considerable time before this move is antici- pated. Given the current state of affairs, I am not veryoptimisticthat this is going to occur with any reg- ularity. To help solve the prob- lems, I believe there are several things we can do. Facilities should be developed within acute care institutions that provide neonatal intensive care to house all ventilator-dependent in- fants who are six weeks of age or older and are making no progress in being weaned from the ventila- tor. Medical supervision should be provided by a neonatologist or a pediatric pulmonologist, and ap- propriate consultation can be re- quested as needed. I would also suggest that a cadre of nurses pro- vide care to the children in this special unit. Using this approach, the following advantages emerge: 1) location of care giving ceases to be a problem; 2) there is continuity of care; 3) coordination with com- munity resources can be antici- pated and begun with sufficient lead time; 4) knowledge will ac- cumulate because of the consis- tency of care given by nurses as well as physicians and other pro- viders; and 5) practical, problemt oriented clinical research can be fostered. I believe it's important for us to begin to accumulate a solid basis of knowledge about this vexing problem, including not only as- pects of prevention but also those measuresthatarerelatedtochron- ic care giving. This information should be refined and disseminat- ed nationwide as soon as possible. Perhaps if major teaching institu- tions can combine this group of in- fants in one clinical area and care- fully document the results of care giving, we can begin to make pro- gress in what currently is a frus- trating experience for parents and caregivers alike. o .:,,P,:;$..-- :,+ .,I -,-.. : *. .:,,P,:;$..-- :,+ .,I -,-.. : *. ._?, i; " ._?, i; " I.6, I.6, it it _ Zf 1. _ Zf 1. ,. 1 ,. 1 yy I -; *y RdtE;.tC;;tiotchkiss,,Mt) yy I -; *y RdtE;.tC;;tiotchkiss,,Mt) ;.,- ;.,- L -*>. -- I L -*>. -- I ;._ ;._ - - ,, -"" -- ,, -"" -- . ;. . ;. .- ;-:, __ .- ;-:, __ , , :., .' :., .' : ' The envjronmont in'hissouri is : ' The envjronmont in'h&ouri is ::dneTof. `fiscal restraint. and, that ::dneTof. `fiscal restraint. and, that -in state government through fed- -in state government through fed- *ma'kes.discu&ions about least *ma'kes.discu&ions about least era1 action in 1981, including the eral action in 1981, including the `dos~lpcaie~~ryapprdpriate..ijjhen `dos~lpcaie~~ryapprdpriate..ijjhen possibiiityfor application for state possibiiityfor application for state -`waivers. We view the current ap- -`waivers. We view the current ap- i ibok',`~is'ptis~tion.a little bv6r a' :~ i ibok',`~is'ptis~tion.a little bv6r a' :~ plication for home health'care`for plication for home health'care`for .-yearago; I wasadvised by manyof .-yearago; I wasadvised by manyof :`~m~~~~ll;e~~".~sa~a'init &Jh&baid :`~m~~~~ll;e~~".~sa~a'init &Jh&baid the chronically ill child as a major the chronically ill child as a major : : . breakthrough. It allows us to get . breakthrough. It allows us to get ,Missou$was not in the best fiscal . past many of the bureaucratic'stum- ,Missou$was not in the best fiscal . past many of the bureaucratic'stum- :shalje,`and :`that the Division of :shalje,`and :`that the Division of ' Health 4n : the ,state had a major ' Health 4n : the ,state had a major + bling blocks that have been built at + bling blocks that have been built at IiabiIity~~jn~,the'~fact that it was ref. IiabiIity~~jn~,the'~fact that it was ref. `the state, tocal and federal levels, `the state, tocal and federal levels, -`to get to the heart of the problem. -`to get to the heart of the problem. sponsible for `environmental .health, sponsible for `environmental .health, butwas located in.the Department butwas located in.the Department : The possibility of delivering ex- : The possibility of delivering ex- --of Socia!, Sciences. `The fact that --of Socia!, Sciences. `The fact that cellent care in a humane-setting at cellent care in a humane-setting at less cost isan immensely desirable less cost isan immensely desirable the Division of Health is linked to the Division of Health is linked to the "Division of Gamily Services the "Division of Gamily Services goal for all of us. We look forward goal for all of us. We look forward -through the, Department of the -through the, Department of the .to the challenge of'implementing .to the challenge of'implementing Social Services, is,the bright spot. Social Services, is,the bright spot. this program as soon as we get this program as soon as we get . . Thebiggest challenge was.how to Thebiggest challenge was.how to approval' from our friends at the approval' from our friends at the get the best possible health' care get the best possible health' care federal level. ! think the environ- federal level. ! think the environ- 1 ment in this century will be one of 1 ment in this century will be one of `system established in the state `system established in the state within resources available. within resources available. very tight fiscal resources and one very tight fiscal resources and one in which only through innovation, in which only through innovation, Although the resources are. on Although the resources are. on cooperation and teamworkwill we cooperation and teamworkwill we the verge of shrinking again, many the verge of shrinking again, many continue to deliver much needed continue to deliver much needed new opportunities have come to us new opportunities have come to us services. 0 services. 0 Kansas Uses' Innovative Programs To Prevent Hospita&atioti Attheturnofthecentury,aKan- sas journalist, William Allen White, became nationally known for his editorial "What's the Matter with Kansas?" His theme was that "when anything is going to happen in this country, it happens first in Kansas." Although Kansas has had many "firsts" this century in public health and mental healthprogram- ming, home care ventilator de- pendent persons have not yet be- come reality. Kansas does have, however, a number of innovative out-of-hospital programsdesigned to prevent hospitalization in the first place or when necessary, to decrease the length of stay. This preventive approach offers a more normal life experience for the handicappedandtheirfamiliesand is cost effective as well. Some pro- files of programs follow. Cystic fibrosis program In 1966 the Kansas legislature appropriated funds to the Depart- ment of Health and Environment to develop services for all cysticfibro- sis children in the state. Since the appropriation was small, the de- partment designed an out-patient Program which lessened the need for hospitalization. Funds were earmarked for the provision of home inhalation equipment and medications at no cost to the families. Centralized purchasing resulted in considerable savings. Diagnostic and case management clinics were established in Wichita and Kansas City. A survey of parents three years after this program was begun, indicated that fewer hos- pitalizations were necessary and the family morale had been greatly improved. Currently, there are 239 active patients on the registrywith 30 over 21 years of age. Most CF chil- dren are progressing in school with their peer group and are becoming self-sufficient in early adulthood. In recent years, the Crippled and Chronically III Children's Program has paid for hospitalization for cys- ticfibrosis patientswhosefamilies are financially eligible. Third-party reimbursement has also strength- ened the financial base of the pro- gram in recent years. In one urban area, cystic fibrosis patients are being discharged from the hospital on intravenous therapy at home. This has decreased the average hospital stay from four weeks to one. Chronic obstructive pulmonary disease (COPD) The Kansas Lung Association in cooperation with physicians in urban and rural areas is en- couraging home based programs in which patients are taught 13 respiratory skills through indi- vidual or group instruction using a :self-study manual. A decreased need for hospitalization is an- tic ipated. Diabetes-outpatient manage- ment of the young diabetic patient The Kansas Medicaid program has had some positive experi- ences with theoutpatient manage- ment of severe diabetic children. One of their patients is a 14-year olcl girl who had been in a Wichita hospital for a total of eight months in a 12-month period including 32 days in intensive care, at a total cost to the agency of $59,000. Medicaid authorized the purchase of an expensive piece of equip- ment, an insulin pump, along with a ,glucometer for monitoring, her blood sugar, so that she could be discharged home. The child has remained homefor 18 monthswith no hospitalizations. The Medicaid agency has now authorized the purchase of additional insulin pumps for two other teenagers with equally good results. Dr. Richard Guthrie, Director of the history as follows. M.H. was born and Child Health Block Program. Kansas Regional Diabetic Center prematurely and weighed slightly lf the family had resided in a com- in Wichita, reports that there are over two pounds. His mother was munity with the special Maternity 64 persons currentlyon theinsulin 17 years old and had dropped out and Infant Care Program for teen- pump at home managed by this of the 10th grade with the preg- agers (there are 10 such programs center. He projects that the total nancy. She had received late and aCrOSS the state), this mother cost of the patient workup and inadequate prenatal care. The in- would have received improved pre- equipment and supplies for the fant was transferred to the inten- natalcareandtheWlCsupplemen- first year would be about $8,000 sive care unit at a Level 3 hospital tal food program with the likeli- compared to an average of sSO,OO0 in Kansas City by ambulance for hood of preventing the birth of a per year for repeated hospitafiza- management of the prematurity premature infant. Since the cost of tions. With 64 patients a year, the and. associated respiratory prob- this preventive health service for difference between home cost and terns. He remained in care for 24 mother and infants averages hospital cost is $1,3OO,OOO. If we days and was returned to a Level 2 $2,000, a cost savings for this pa- project this figure nationally, such hospital in his homecommunityfor tient would be $48,000. a program could save $50 million 14 days of convalescent care. The In summary, 1 would echo per year. cost of this hospital care was William Allen White and say, Prevention of prematurity programs $50,000. This infant is developing `There's nothing the matter with normally and special education Kansas" as Kansas responds with costs have been avoided by the practical approaches for home The cost of premature care excellent perinatal network pro- based programs to meet the needs can best be illustrated by a case gram established by the Maternal of families. 0 their lives to this population. We childran were% intended to live' whi;jj;we g$dr?g A, v-F--. ,n insur-' didn't have rigid agenda, 6r tin% in an intensive %a& unit oi a.high- frames ante-~%z&rpany,, end: show them -we had groupsin which i risk nursery. High-risk nurseries we talked about ventilator-depen- have `other, @asons ,for`being. cost sa&ngs ahd approach them dent children - how ta get them These children need a bet&home. as c:oll&agues,thi jy-:are willing to listen and will.sr tmetimes revise home, their problems, whetaur ex- They need better afternative living their policies inoidertocoverthese periences have been, what we solutions - if not their own home, should look forward te in the fu-' then a home-like set&$&&ome- children;. Third,, other .than the Crippled tube. Consequently, we wanted to thing e/se, "' ?::I &ring these peopte together and Third, oneof themajor&~&swe Chitdren'snrograms,TitleXIX,and the Maternal Child Health Nook &are experiences for ihiee main face after medical stability is, "How Grant, there are reallv no other reasons. .)_I I=1, : .`Qne is best summa&&d are we going to payforthesechif- : sources of funding, with the ex- by the `, dren to go home?`* We'voheardthe ception `of grants and gifts. In II- !ast few words that BettyWarten- figures, and they are hard to be- linois &d other states, we can berg spoke at the Surgeon Genet- ,I lieve. Do you really believe that we save approximately $22,000 a al's Workshop in Washington. ft saved the stateof lllinois$5million month by creating a little ambu- made the hair on my neck stand up " in the last four years on these latary intensive care unit in the m, fhe back, and I shivered. Betty; " children? These figures are over- home. It looks like a home, but yet #Fen she finished her. speech, whelming. f .:>: :: ,`,,~ ,+q$d, ,"I thank you for not pulling .The first time I &as @`&viewed it has equipment - a ventilator, a suctionmachine, andsometimesa tee plug on Donnie." far a local paper, they asked how backup generator or ventilator. j'