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