SURGEON GENERAL S REPORT

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1 SURGEON GENERAL S REPORT CHILDREN WITH CAMPAIGN 87 COMMITMENTTO FAMILY CENTERED COORDINATED CARE FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES Pubic Heath Service

2 SURGEON GENERAL S REPORT: CHILDREN WITH SPECIAL HEALTH CARE NEEDS CAMPAIGN 87 Commitment to: Famiy-Centered Community-Based Coordinated Care June 1987

3 Acknowedgements This report coud not have been written without the contributions of those who participated in The Surgeon Genera s Workshop on Chidren With Handicaps and Their Famiies in 1982, in the regiona Workshops that foowed, and in the extraordinary number of oca endeavors on behaf of chidren with specia heath care needs. I am most gratefu to a of them. C. Everett Koop, M.D., Sc.D. Surgeon Genera United States Pubic Heath Service

4 3 I. Introduction This report is about chidren with specia heath care needs. As a parent and as a pediatric surgeon, I have fet a specia commitment to these chidren and their famiies for over forty years. Chidren are the future of our nation and we must assure that chidren with specia heath care needs have the fuest opportunity to participate in a aspects of American society. In 1982, I caed a Surgeon Genera s Workshop on Chidren with Handicaps and Their Famiies. The goas of the Workshop were to deveop strategies for comprehensive services needed by chidren with specia heath care needs; to address the chaenges and burdens of the famiies of these chidren; and to stimuate community resources. Major Workshop recommendations incuded defining the scope of the probem; deveoping standards; deveoping systems of care; improving financing of care; incorporating principes of care into training for heath professionas; and supporting research. Major actions taken since that time have impemented many of the Workshop recommendations, and showed the tremendous interest, caring, and concern of famiies and professionas invoved in the care of chidren with specia heath care needs. This report is a ca to action. We are estabishing a patform for a nationa agenda. It is time to draw our efforts together, recognize the progress we have made and chart a strong future course. I firmy beieve that we have the knowedge, expertise and resources to make this happen. I know you wi join me in our nationa campaign to improve the ives of chidren with specia heath care needs and their famiies.

5 II. Action Steps This document focuses on a famiy-centered, community-based approach to heath care. I beieve this must be centra to our thinking and to our efforts. I support the foowing eements of famiy centered care:. Recognition that the famiy is the constant in the chid s ife whie the service systems and personne within those systems fuctuate.. Faciitation of parent/professiona coaboration at a eves of heath care--care of an individua chid; program deveopment, impementation, and evauation: and poicy formuation. Sharing of unbiased and compete information with parents about their chid s care on an ongoing basis in a supportive manner. Impementation of comprehensive poicies and programs that provide emotiona and financia support to famiies.. Recognition of famiy strengths and diversity, and respect for a variety of methods of coping.. Encouragement of norma patterns of iving in the home and community.. Understanding and incorporation of the deveopmenta needs of infants, chidren and adoescents, and their famiies into the heath care deivery system.. Encouragement and faciitation of parent-to-parent support.. Assurance that the design of heath care deivery systems is fexibe, accessibe and responsive to famiies.

6 6 In keeping with these eements, I have identified seven action steps that I beieve can improve access to care and the quaity of ife for a chidren with specia heath care needs and their famiies: 1. Pedge a nationa commitment to a chidren wirh specia heath care needs and their famiies Encourage buiding community-based service systems. Assist in ensuring adequate preparation of providers of care. Deveop coaitions to improve the deivery of services. Estabish guideines to contro costs of services. Encourage and support the deveopment of adequate heath care financing. 7. Continue to conduct research and disseminate information. For each of the action steps, I have incuded brief descriptions of some of the many worthwhie projects that have been undertaken since the 1982 Workshop. These exampes show some of the exciting activities that are occurring as we work together to improve care for chidren with specia heath care needs and their famiies.

7 7 ACTION STEP 1 Pedge a Nationa Commitment to A Chidren with Specia Heath Care Needs and Their Famiies We must commit to using the necessary resources to provide services and financia coverage for chidren with specia heath care needs and their famiies. Now is the time to use our knowedge and resources effectivey, and to recognize that we must move forward. Chidren with specia heath care needs incude chidren with a broad range of disabiities and inesses. Many different terms and cassifications have been used to describe these chidren, and data from these various cassifications are often not comparabe. According to the study conducted by the Vanderbit Institute of Pubic Heath Poicy on Chronicay I Chidren and Their Famiies, about 1 O-15 percent of chidren are estimated to have some form of chronic heath condition, many of which are mid. Estimates from the Nationa Center for Heath Statistics 1985 Nationa,Heath Interview Survey show that 3.7 percent of chidren under 18 years of age are either unabe to engage in major usua activities or are imited in the amount or kind of usua activities. Smaer numbers are estimated to be dependent upon technoogy for sustaining ife. We do not intend to restrict our concern to a carefuy defined popuation or to tak about precise numbers. Rather, we recognize that there are chidren with specia heath care needs (mid or severe; short-term, intermittent, or chronic), and that famiy-centered, community-based coordinated care must be avaiabe for them. In this way, famiies have access to care that is responsive to their changing needs.

8 8 It is important, however, to refine our data and information as we move ahead to: Create systems of care that are responsive to the strengths and needs of famiies. Ensure that these systems are fexibe, are sensitive to cutura differences in famiies, and provide a range of options to famiies. Assure the avaiabiity of cost-effective, comprehensive services incuding socia, emotiona, and cognitive aspects of heath care. Assure affordabe heath care.. Enhance the skis of professionas in providing competent and compassionate care. Conduct evauations of the effectiveness of supportive services for famiies. EXAMPLE: ACCH Famiy-Centered Cafe Project The goa of the famiy-centered care project at the Association for the Care of Chidren s Heath (ACCH), in Washington, D. C., is to promote parent/professiona coaboration and the use of a famiy-centered approach in a heath care deivery systems. Activities incude assisting state agencies to encourage parent/ professiona coaboration; faciitating the use of poicies and programs in hospitas and community settings that provide emotiona and financia support for famiies; deveoping famiy-centered educationa materias for heath professionas; encouraging parent-to-parent support; deveoping a resource center on famiy-centered care programs; and enhancing the abiity of parents to coaborate with heath professionas and community organizations.

9 9 ACCH has convened networking meetings on famiy-centered care, presented famiy-centered materia at severa nationa and State meetings, and provided consutation to States on parent/professiona coaboration and famiy-centered care poicies. Aso, famiy-centered guideines and directories are being deveoped. In addition, ACCH has monthy maiings to over 500 parents and professionas, and is expanding its quartery newsetter. EXAMPLE Southern Corporate Coaition The Southern Regiona Task Force on Infant Mortaity was formed in 1984 to draw attention to the critica probem of infant mortaity in the South and to promote preventive measures to reduce its incidence. The effort is a joint project of the Southern Governors Association and the Southern Legisative Conference. The Task Force pubished severa reports which incuded a bueprint for action to reduce infant mortaity and ow birth weight in the South. One of the recommendations in the Fina Report was to work cosey with the corporate community to address this significant human resource probem. The governors of the 17 Southern States in the Southern Governors Association asked two corporate executives in each State to serve on a Corporate Coaition of the Southern Regiona Project on Infant Mortaity. The task of the Coaition is to identify economic benefits to be gained by business and the community at arge from improved materna and infant heath care. In addition, Coaition members wi examine ways to reduce infant mortaity through corporate poicies, and wi make recommendations to other businesses in the South to promote improved materna and infant heath. EXAMPLE: Project SERVE Project SERVE is a coaborative effort of the Massachusetts Department of Pubic Heaths Division of Famiy Heath Services, the Harvard Schoo of Pubic Heath, and the Deveopmenta Evauation Cinic at the

10 10 Chidren s Hospita Medica Center in Boston. The project is managed by the Massachusetts Heath Research Institute. The purpose of the project is to ook at the most appropriate content, organization and financing of services for chidren with specia heath care needs and their famiies. Data have been coected over a two-year periid from consumers, advocacy groups, primary and speciaty heath care providers, and State human service agencies. A report entited New Directions: Serving Chidren with Specia Heath Care Needs in Massachusetts provides a poicy framework and summary of findings, and offers 14 recommendations. A Patform for Reform in Massachusetts was deveoped for dissemination at a Statewide forum hed as a fina project activity. This forum focused on issues of financing heath care for chidren with specia heath care needs and was aimed at mobiizing parents, providers, and poicy makers to create new initiatives in this area.

11 11 ACTION STEP 2 Encourage Buiding Community-Based Service Systems Chidren deserve to ive with their famiies in their own communities, and to share in the everyday experiences most Americans take for granted. We must make a commitment to provide the kinds of heath care these chidren require, in ways that aow them to participate as fuy as possibe in a aspects of famiy and community ife. Chidren with specia heath care needs and their famiies require a wide variety of services from many agencies and professionas. These services are provided in different settings usuay referred to as primary, secondary, and tertiary eves of care. These chidren need basic heath services (primary care), usuay provided by pediatricians, famiy doctors, or oca heath cinics in their home communities. They aso require a variety of heath, education, menta heath, and socia services provided at the community eve (secondary care). These community-based services must be integrated to be responsive to the needs of famiies, and coordinated to prevent fragmentation, gaps in service, or dupication. Not a services can be provided at the community eve. More sophisticated care (tertiary eve) usuay is provided in chidren s hospitas, arge medica centers and teaching hospitas. Strong inkages between the more sophisticated tertiary care and community service providers wi enhance the continuity of care and hep ensure cost-effective quaity care within coordinated systems. At the State eve, professionas and agencies must work together to support the deveopment and improvement of these systems of care.. Existing community-based systems of services for chidren with specia heath care needs must be made known and utiized, and

12 12 additiona systems must be deveoped, expanded, and improved. In estabishing these service systems, we must recognize the roes of three eves of heath care--primary, secondary, and tertiary. Community-based service systems must assure that chidren and their famiies receive medica care, educationa services, socia services, menta heath services, and a variety of famiy support services in the most faciitating environment. Community-based systems shoud faciitate coordination by providing case management services and individuaized service pans.. Primary and secondary eve care shoud be community-based. There shoud be strong inkages between community eve services and tertiary eve care.. Protocos must be estabished to assure the quaity of care. 9 Individua service pans and case management services can provide a method for monitoring quaity of care and services.. Both parents and professionas shoud participate in the deveopment of standards for heath care professionas, for faciities and for equipment. Mechanisms must be in pace to assure that these standards are met.. Famiies must pay a strong roe in a phases of quaity assurance. Quaity assurance mechanisms for community programs can benefit from the experiences in hospita settings. EXAMPLE: Coordinate for Kids A community coaboration approach for eary intervention services,

13 caed Coordinate for Kids has been deveoped in the State department of heath in Okahoma in conjunction with a university affiiated center in the region. Since the inception of the project, coaborative community teams have been estabished in seven communities. Task forces and councis have been formed to assure responsiveness to cuturay diverse groups. A State interagency task force has been estabished and is panning services for chidren with specia needs. A Statewide needs assessment survey has been competed by the task force. In addition, a State information and referra system for chidren with specia needs has been initiated. Funding for this system invoved efforts of parents and private donors, as we as oca and State agencies. A computer-based communication network has been estabished to ink community teams, parent groups, and State program personne in Okahoma with the University Affiiated Center in Daas, Texas. Coectivey, the community teams are addressing the deveopment of respite services, parent support groups, interagency case conferencing, and case management. EXAMPLE: Michigan Locay Based Services Project In 1983, the Michigan program for chidren with specia heath care needs, administered by the Division of Services for Cripped Chidren (DSCC) of the Michigan Department of Pubic Heath, initiated a Locay Based Services (LBS) project to expand and improve community-based services for chidren with specia heath care needs. DSCC is using oca heath departments to deiver services to these chidren and their famiies in or near their home communities throughout the State. A major component of the LBS project is the provision of case management services by oca heath personne. A pan for case management is deveoped based on an interdiscipinary assessment of the probems and service needs of the chid and the famiy. The case manager monitors the impementation of the case pan. The case manager aso heps the

14 14 famiy obtain needed services, and coordinates services from mutipe agencies, programs and providers. As a resut of the project, famiies are gaining skis in probem-soving, management of services and sefadvocacy. EXAMPLE: The Hawaii Experience Two projects in Hawaii are working cosey together to address the needs of cuturay diverse popuations. A new project at the Hawaii Famiy Stress Center in Honouu is faciitating primary care physician participation in preventive heath care of chidren aged O-5 from underserved, cuturay diverse popuations. The project promotes invovement of pediatricians in eary screening and intervention. Goas incude increasing the eve of preventive heath care, reducing severity of psychosocia probems and deveopmenta deays, and increasing the physician s invovement as pan of a team. The project functions within a home visitor project, Heathy Start, designed for prevention of chid abuse. Another project has deveoped a community support network system for native Hawaiian chidren and their famiies. The Famiy Based Education Center Project at the Kamehameha Schoo is conducting an extensive needs assessment of community service use and deivery within educationa and heath reated areas for famiies of chidren O-5 years. The project aso is working with the State Tite V programs to deveop a Statewide mode program, and is estabishing inkages to the private practice community to universities, coeges and other vountary, pubic and private resources in the State. EXAMPLE: Iowa Regiona Speciaized Chid Heath Centers Iowa has a system of regiona, speciaized chid heath centers, conducted by the Iowa Program for Chidren with Specia Heath Care Needs, administered by the Iowa Department of Pubic Heath. This system provides community-based services for chidren with specia heath care needs and receives funding from a variety of sources.

15 15 The regiona centers are ocated throughout the State so they can provide services to chidren in or near their home communities. They are staffed by community service providers and are governed by oca boards. The centers are the ocus for coaboration among heath, socia service, and education professionas from different agencies. They provide speciaized evauation services and coordination of services to chidren with chronic heath probems and heafth-reated educationa and behaviora probems. The Iowa Genera Assemby has appropriated Federa Tite V funds and State genera funds for the support of these centers. The area education agencies furnish specia education staff for these centers and the department of human services contributes socia work staff.

16 17 ACTION STEP 3 Assist in Ensuring Adequate Preparation of Providers of Care Famiy-centered, community-based service systems shoud be deveoped where chidren and their famiies ive. These systems cannot function without personne who have been adequatey trained to provide famiy-centered, community-based care. To provide services in a community setting requires an orientation and specific skis that differ from those needed in other settings. Service providers who work in communitybased programs must be trained to coaborate with famiies and other professionas to deveop and impement care pans for chidren with specia heath care needs.. An interdiscipinary approach to heath care shoud be empoyed. More emphasis shoud be paced on the team approach to heath care deivery in a settings.. Heath provider education shoud invove more course work and practica experience in the deveopmenta needs of chidren with specia heath care needs and their famiies. Training programs shoud emphasize the infuences of famiy, psychosocia, and environmenta factors on heath status.. Heath personne training shoud incude programs that provide contact over time with chidren with specia heath care needs and their famiies, particuary in home and community settings. Concepts and practice of famiy-centered care shoud be incorporated into the curricua used for training of heath care provid-

17 18 ers. Famiies shoud participate in the deveopment of curricua and preparation of these providers at the pre-service and inservice eves. Professiona organization meetings and training programs shoud be modes of parent/professiona coaboration.. Providers of care in community-based settings shoud share effective practices and innovative ideas with other professionas. State heath, education, menta heath and socia services agencies need to address personne training in famiy-centered, community-based care. EXAMPLE: Chronic Iness Teaching Program A Chronic Iness Teaching Program was initiated at Michigan State University in This primary care pediatric residency paces a strong emphasis on the deveopmenta and behaviora aspects of chid care. The Teaching Program compements the disease management information received by the residents. The goa of the program is the training of pediatricians in the knowedge, attitudes, and skis needed to improve the care of chidren with chronic conditions. The centra experience of the program is a three year, in-depth study of a chid with a chronic condition and the chid s famiy. The study acquaints the resident with the socia, financia, educationa, and psychoogica impact of a continuing condition on the chid and the famiy. EXAMPLE: Project BRIDGE The American Academy of Pediatrics aunched Project BRIDGE (Buiding Reationships for Infants with Disabiities through Group Education) to address the team needs of professionas who care for chidren with disabiities (birth to three years) and their famiies. The project has incuded improving team decision making practices, refining team function, increasing awareness of the benefits of eary intervention and speciaized

18 19 services, and improving coordination and continuity of service deivery. The project incudes deveopment of the in-service education program, and deivery of the program nationay and regionay. EXAMPLE: The Connecticut IDA The Connecticut Infant/Todder Deveopmenta Assessment (IDA) is a new way to measure infant/todder deveopment. It is a second-eve assessment designed to bridge the gap between simpe screenings and compex tertiary evauations. The goa of the project is to improve community identification and assessment services for handicapped and at-risk chidren from birth to three years of age by providing compementary deveopmenta assessment training for heath, aied heath and education professionas and other professionas who serve chidren. The assessment addresses the interreatedness of the heath, deveopmenta, psychosocia, and famiy dimensions. The IDA evoved from the experiences of severa eary chidhood deveopment speciaists, physicians and pubic heath speciaists at the Yae University Chid Study Center and was deveoped by a Statewide Interagency Task Force. Participants incuded primary care centers, speciaty diagnostic cinics, neonata foow-up services, eary intervention programs, pubic schoo pupi personne staff, and rehabiitation services. Project staff in the Hartford Department of Heath, in partnership with the Heath Services for Handicapped Chidren section of the Connecticut Department of Heath Services, competed an IDA Procedures Manua, and deveoped curricua and training materias for cassroom sessions as we as for cinica practica. EXAMPLE: Continuing Education Institute The Continuing Education Institute in Ohio offers both introductory and advanced continuing education programs. The purpose of the Institute is to maintain and strengthen eadership capabiities for medica, administrative, and other professiona staff in key management positions of State Tite V programs for chidren with specia heath care needs through-

19 20 out the country. Major areas addressed incude program deveopment, fisca administration, pubic poicy, and promotion and coordination. Facuty for the Institute incude directors or representatives from Federa and State Tite V Programs, the academic community, and guest speakers. The Institute provides time for informa sharing of information with the facuty, presenters, and coeagues.

20 21 ACTION STEP 4 Deveop Coaitions to Improve the Deivery of Services Coaboration and cooperation of parents, professionas from a variety of discipines, and organizations hep ensure successfu deivery of famiycentered, community-based services. Strong eadership and commitment are needed as individuas and groups work together to improve deivery of services. There must be cooperation among a sectors: pubic, private, and vountary. A departments and eves of government shoud work together across agency ines and among community, State, regiona, and nationa eves to ensure effective and efficient services.. There must be coordination and cooperation among heath care professionas at the primary, secondary and tertiary eves of care. Coaitions must be formed among organizations and groups representing a disabing conditions. EXAMPLE: New Mexico Service Coordination A New Mexico project seeks to improve the coordination of services for a chronicay impaired chidren in the State. Specia attention has been given to pans and procedures addressing the heath care needs of Native American chidren and their famiies. The project has been successfu in furthering parent/professiona partnerships in panning services, estabishing poicy and in impementing programs. Famiy support

21 22 groups, using professionas as consuftants, have emerged at the oca eve. Continuous panning, invoving both parents and professionas, is underway for identification and tracking, case management, organization of medica services, famiy support systems, services for infants during the first two years of ife, information and referra, and financing of care. The project has used a famiy-centered approach to activities. Parents have participated in the panning and conducting of a famiy stress conference and Native American parent-training workshops on rights under Federa egisation. This project has demonstrated the effectiveness of forming coaitions between parent and professiona groups. EXAMPLE: CAPP: Parent/Professiona Coaboration The Federation for Chidren with Specia Needs in Boston directs a project caed Coaboration Among Parents and Heath Professionas (CAPP). The purpose of CAPP is to increase and enhance parent invovement in the heafth care of their chidren with specia needs. The CAPP project works cosey with a nationa technica assistance effort for parent training and information funded by the Department of Education. Project goas are to prepare parents to assume integra roes in the heath care of their chidren, to promote communication and coaboration among parents and heath professionas, and to deveop a nationa support system for parents. CAPP activities have incuded deveopment of training materias and workshops; conferences, meetings, and task forces focused on parent/ professiona communication and coaboration: regiona outreach activities; and work with New Engand State departments of pubic heath. CAPP aso is deveoping modes for parent invovement in heath care settings. EXAMPLE: Aiance of Genetics Support Groups The Aiance of Genetics Support Groups is a coaition of vountary organizations and professionas that grew out of a 1985 symposium. The

22 23 Aiance was formed to hep genetics support groups become a unified force, to hep the groups estabish a ink with research communities, to promote pubic education, and to provide a mechanism for sharing information The Aiance incudes eaders from a dozen nationa organizations, as we as representatives of professiona communities, such as heath care, education, and aw. The Aiance has pubished a newsetter and has hed a nationa conference. EXAMPLE: The Nationa Center for Networking Community-Based Services The Nationa Center Network project is based at the Georgetown University Chid Deveopment Center. The goa of this project is to achieve comprehensive, coordinated, community-based services for chidren with specia needs and their famiies, through improved coaboration among pubic and private agencies and parents at a service eves. The project maintains a network of eaders in heath, menta heath, and education; faciitates coaitions within States; provides training and technica assistance; deveops knowedge and resources in areas such as famiy-centered care, financing of services, serving cuturay diverse groups, and invoving private pediatricians: and faciitates Federa interagency panning.

23 25 ACTION STEP 5 Estabish Guideines to Contro Costs of Services We can contro costs whie sti ensuring the quaity of services. Studies have shown that a comprehensive coordinated approach to care is cost-effective. We have demonstrated the feasibiity and efficacy of this with specific diseases and conditions. Our chaenge is to use this experience to deveop a system of generic services at the community eve which is inked to speciaized services at the tertiary eve. The nation wi be served better by deveoping a generic system of care for a chidren with specia heath care needs than by repeating our experiences on a disease-by-disease basis.. Case management to contro costs and to ensure quaity care must be deveoped and expanded in communities. We must find ways to pay for care at the community eve. Carefu studies must be conducted to document cost savings of community systems that repace fragmented patterns of service deivery. ow. Some exampes of cost savings with specific conditions are given be- EXAMPLE Hemophiia Centers The benefits of comprehensive care of persons with hemophiia have been shown through the Federay funded Hemophiia Diagnostic and Treatment Centers. The care provided through these regiona centers

24 26 has resuted in improved heath status, decreased hospitaization, a decrease in the unempoyment rate, and decreased costs of care. The impact of this program has been dramatic. For exampe, between 1975 and 1985: The number of patients receiving comprehensive care and the number receiving care at home increased neary five times. The average number of hospita days per year per patient has been reduced by 80 percent The number of days ost from work or schoo each year has been reduced by 73 percent The percent of unempoyed aduts dropped from 36 percent to 9 percent The average cost of heath care per year has been reduced from $31,600 to $8,100. This $23,500 savings per patient represents an annua nationa savings of $223 miion. EXAMPLE: Technoogy Assisted Chidren State Tite V Programs for Chidren with Specia Heatth Care Needs in Iinois, Louisiana, and Maryand received grants from the Division of Materna and Chid Heath to deveop systems of regiona care for technoogy assisted chidren. The resuts have been impressive, both in terms of quaity care and cost savings. These projects focus on the transfer of chidren from institutiona settings to home or homeike settings through the use of teams of many different professionas. These projects have proven that famiy-centered, community-based systems can be deveoped through proper management and coordination. In order to institutionaize cost-saving measures, the Iinois project staff identified important gaps in the heath care deivery systems invoved

25 27 in pediatric care at home; the Louisiana project emphasized coordinated management of hospitaization, to reduce the engths of stay as we as costs; and the Maryand project estabished a Center for Coordinated Home and Community Care, a private non-profit organization, to faciitate hospita discharge and case management of specia services in the community. A report, Aternatives to Hospitaization for Technoogy Dependent Chidren, prepared by the Nationa Materna and Chid Heath Resource Center at the University of Iowa under a grant, Future Directions of Services for Chidren with Specia Heath Care Needs, concuded that the care of technoogy dependent chidren in a home setting is generay ess costy to pubic and private third-party payers than ong-term care in a hospita or institutiona setting. However, data about the reative costs of home care and hospita or institutiona care are not readiy avaiabe, and additiona research is needed to estabish the reative costs of such care. EXAMPLE: Other Conditions Comprehensive programs in Pediatric Rheumatoogy, deveoped with Tite V support, demonstrated that coordinated care can improve heath status, decrease hospitaizations, improve schoo attendance, and contro costs. Texas Chidren s Hospita has reduced hospitaizations by 50 percent using case management support teams. The Cincinnati Regiona Center has improved schoo attendance above the norm for the oca area (Z/3 competed more than high schoo). In chidren with diabetes, patient education has been demonstrated to improve patient heath, essen disease-reated absenteeism, improve short-term contro, and essen the use of expensive heath faciities. The key to cost-effective diabetes contro is patient adherence to the diabetes regimen. Studies show that the reguar heath provider/patient contact in the community-based, coordinated care mode substantiay increases adherence to the regimen. For the chid with menta retardation the cost of institutiona care is about four times the cost of care at home.

26 29 ACTION STEP 6 Encourage and Support the Deveopment of Adequate Heath Care Financing A chidren and their famiies shoud have access to adequate heath insurance. A substantia number of Americans have no private or pubic heath insurance for either a or part of the year, and the number is growing. In the under 65 popuation, chidren under 18 constitute a arge proportion of the uninsured popuation. Even when insured, many famiies face high out-of-pocket expenses for many heath care services which are not covered by their benefit packages. Whie some services used by chidren with specia heath care needs are we covered, such as those provided in the hospita setting, community-based services are ess we covered, incuding physician and nursing services, socia work and nutrition services, physica therapy, respite care and famiy counseing. There have been some recent improvements in coverage of community-based services, especiay care at home, after recognition of cost savings. Whie there are many potentia sources of heath care financing, they are often fragmented and confusing to parents. Inadequate insurance, imitations on benefits, deductibes, copayments, ack of coverage of certain types of services, and imits on maximum ifetime benefits a pace significant hardships on famiies caring for chidren with specia heath care needs. We must work together to assure adequate financing to protect these chidren and their famiies. Heath care insurance must be avaiabe for a chidren with specia heath care needs and their famiies.

27 30. Heath care insurance must adequatey cover chronic care and care in the community; must recognize the comprehensive needs of chidren and their famiies, incuding supportive services; must not interfere with a famiy s empoyment options; must assure equa access to care for a chidren across geographic boundaries; and must protect the dignity and integrity of famiies. We must recognize the need for pubic funds which assist in deveoping the service systems of care. This coud incude case management and enhanced community services, as we as monitoring and standards deveopment. One source of these funds is Tie V. The methods of financing heath care for chidren with specia heath care needs is an unsetted issue. Many different options are being considered to improve pubic and private insurance. Some of these options incude expanding Medicaid coverage at the State eve, Medicaid waivers, State risk poos to subsidize insurance for those whose medica condition makes it prohibitivey expensive or impossibe to get insurance, affordabe ong-term care insurance, prospective payment pans, catastrophic iness insurance, and tax poicy changes such as expanding deductions. EXAMPLE: Indemnity Insurance Carrier Financing In a Texas project, designed to demonstrate the deveopment of a system of care for chidren with specia heath care needs, an arrangement was made with the Medica Director of Bue Cross/Bue Shied of Texas for a piot program to pay for the ambuatory services of the care management support team at four diverse sites in the State: Texas Chidren s Hospita, Houston (tertiary center): Kesey Seybod Cinic, Inc., Houston (fee-forservice/hmo cinic); Providence Memoria hospita, E Paso (community hospita in arge metropoitan area); and McAen Easter Sea Society Cinic, Houston (secondary eve center in arge rura area). The Kesey Seybod Cinic aso serves as the site for a study of the Maxicare Heath Pan to determine ways of paying for chronic care within an HMO setting.

28 31 Payment for ambuatory heath team services by indemnity carriers is often imited to physician fees, with some physica and occupationa therapy charges aowed. There is itte or no coverage for patient education, medica socia work services, nutrition services, or other support services. In the piot sites, payment is based on composite charges for an initia assessment and composite charges for foow-up team visits. Evauation of these piot sites wi determine the effectiveness of this financing mechanism in managing both the professiona activities of the team and in charging for services. EXAMPLE: Heath Care Financing Project Abert Einstein Coege of Medicine in New York is conducting a project on Financing Heath Care for Chronicay I and Disabed Chidren. The goas of the project are to deveop reiabe nationa estimates of the direct costs and sources of payment for hemophiia, autism, and severe menta retardation; to coect expenditure data from sampes of famiies; to use these data to deveop poicy aternatives to the current financing system; and to improve the care of chidren with disabiities and contro costs. The parents of nationa sampes of chidren and young aduts with autism and chidren and young adutts with menta retardation provided information on the financing of their chidren s heath care. Preiminary findings on the patterns of pubic and private heath insurance for chidren with autism and chidren with menta retardation show that these chidren are ess we covered by private heath insurance than the average American chid. However, they are substantiay better covered by pubic programs than the average chid. A arge percentage of the chidren under 18 are covered by Medicaid. Insurance gaps exist primariy in centra city areas in the sampe. Initia project findings wi be augmented with fu reports on insurance coverage, as we as reports on the use of heath care services, variations in expenditures for medica and financia reasons, case management, and financia counseing. EXAMPLE: MCH-Medicaid Managed Care in Utah Two efforts are being made in Utah to improve outcomes and contro

29 32 costs of care for chidren with specia heath care needs. In order to target scarce resources, the State Tite XIX and Tite V agencies (Medicaid and Materna and Chid Heath) cooperated in a study of pregnant Medicaid recipients. The study showed that increasing the number of prenata visits improves the outcome of pregnancy. Mothers who made fewer than six prenata visits had a higher number of ow birth weight babies than those making over ten visits. The average charge to Medicaid for ow birth weight babies was $63,000, whie the charge for norma weight babies was ess than $3,000. This study was instrumenta in the State egisature funding a cooperative prenata care program between MCH and Medicaid to improve the outcomes of pregnancy among ow-income women. In another project, the State Medicaid program contracts with HMOs to provide managed care to their cients. MCH and Medicaid worked together to deveop an innovative approach to ensuring quaity care for chidren with specia needs under this new system. Through an interagency agreement, a chidren with specia heath care needs are referred to State Tite V programs for coordinated management of their speciaized care, whie the HMO continues to provide their reguar heath care. Data are being coected to evauate referra patterns and cost-effectiveness. EXAMPLE: PATHFINDER Project PATHFINDER, in Minneapois, Minnesota, is based on the premise that effective utiization of existing resources can improve the efforts of professionas, programs, and parents at the community eve. PATHFIND- ER has successfuy estabished inkages in communities through network buiding. The project has fostered a cooperative environment among agencies providing medica care, home services, and Medicaid financing for medicay fragie chidren in Minnesota. PATHFINDER aso has competed studies of severa mechanisms of financing heath care for chidren with chronic conditions. A 1986 PATHFINDER study examined the heath care coverage of chronicay i chidren in fee-for-service and in prepaid pans. The study incuded a survey of State high-risk insurance programs and the Minnesota Comprehensive Heath Association Program to document utiization of

30 33 services by chidren with chronic iness who are enroed in a Statemandated high-risk insurance program. The Minnesota Department of Human Services asked the project to estabish a Task Force to deveop a home care, community-based service mode for Medicaid-eigibe chronicay i chidren. A mode service deivery system deveoped by the Task Force incuded: 1) definition of the target popuation, 2) cient intake and case management responsibiities, 3) service definitions, 4) screening toos, and 5) quaity assurance. The proposed program was impemented by Minnesota in the Spring 1986 as The Community Aternatives for Chidren s Programs. Chidren with chronic inesses or disabiities, previousy hospitaized to be covered by Medicaid, now can receive services out of the hospita.

31 35 ACTION STEP 7 Continue to Conduct Research and Disseminate Information We need to continue coecting reevant data and information. But we must do more than add to our existing knowedge--we must put into practice what we earn. New ideas and mechanisms must be expored and impemented.. Discretionary funds shoud be used to support research, demonstrations, and training.. New and emerging issues must be studied, and the resuts of such studies shoud be carefuy reviewed for appication to the fied.. Famiies shoud participate in the deveopment and review of research and demonstration projects. Wide dissemination of research and workshop findings wi assure maximum appication. ExAwLE: Cassification System Traditionay, chidren with specia heath care needs have been cassified according to their medica diagnoses. Much of the data we have deas with chidren with specific diseases or conditions. Cassification of a system based on functiona capacity and service needs heps assure better panning, impementation, and evauation of famiy-centered, communitybased systems of services for chidren with specia heatth care needs.

32 36 The Nationa Materna and Chid Heath Resource Center, under the project Future Directions of Services for Chidren with Specia Heath Care Needs, has deveoped a new cassification system which currenty is being tested in severa States by Tite V State Programs for Chidren with Specia Heath Care Needs (formery CCS Programs). EXAMPLE: Improving Services Through Dissemination Project Zero to Three is based at the Nationa Center for Cinica Infant Programs. The project s purpose is to improve services for disabed and at-risk infants, todders, and their famiies through activities such as nationa meetings, regiona conferences, an interstate buddy system, consutations, and a newsetter. In addition to meetings and conferences on topics such as program evauation and research utiization, severa pubications, reports, and a newsetter have been prepared and distributed by project staff. Another project, the Nationa Center for Youth with Disabiities in Minnesota, was estabished to maximize the potentia of adoescents and young aduts with disabiities. The Center s objectives are to deveop a computer-based nationa resource ibrary, to identify groups of heath care professionas to consut with programs and agencies on heath-reated issues which affect adoescents and young aduts with disabiities, and to faciitate the deveopment of pubic poicy to assist these youth with chronic heath conditions. EXAMPLE: Eectronic Networks and Teecommunications Systems In 1984, the Department of Heath and Human Services and the Department of Education formed a coaition to deveop a nationa information and referra system at the University of South Caroina and at the Association of University Affiiated Programs on resources and services avaiabe for chidren with specia heath care needs. This system is comprised of oca, State, and regiona teephone and persona computer networks.

33 37 These networks are operated by parents: pnrr~ry, secondary, and tertiary Care providers; governmenta agencies: and vountary organizations on behaf of chidren with specia heath care needs and their famiies. in addition, database networks are being deveoped at the Institute for Chid Heath Poicy in Gainesvie, Ptonda (A Computerized Management information Database) and at a center for deveopmentay disabed individuas in San Diego, Caifornia The &qn Diego System (A COpXJh3rized Patient Tracking and nformatiin System ) effectivey tracks the deivery of SefViCeS to chidren with specia heath care needs from Southeast Asian famiies. These activities make it possibe to combine teecommunications with computerization to improve the currency and accuracy of information avaiabe t0 famiy-oriented, community-based systems of care for chidren with specia heath care needs.

34 39 III. A CALL FOR ACTION Chidren with specia heath care needs and their famiies face many chaenges and burdens. Yet, we have the knowedge and resources to assist them in obtaining affordabe, quaity services. We have made progress, but can do much more to assure comprehensive systems of services for these chidren and their famiies. Let us a make the commitment to these chidren and their famiies today, and move forward knowing that we have the information to guide us. In 1980 the Pubic Heath Service issued Promoting Heath/Preventing Disease: Objectives for the Nation. The Objectives for the Nation for 1990 are being updated for the year We wi incorporate our task into the nationa objectives. I am asking the Division of Materna and Chid Heath to take the ead in coaboration with the American Academy of Pediatrics in assuring that our nation has a famiy-centered, community-based approach to care for a chidren with specia heath care needs. I ask a of you to work with the Division to accompish this goa. With the coaboration of famiies, parent coaitions, State agencies, pubic and private heath care providers, community support organizations, and the heath care financing sector, we wi be abe to accompish our task. Therefore, I am asking:. FAMILIES-to activey participate in caring for their chidren and to hep shape heath care poicy and programs. STATES--to impement systems of care which support the strengths and needs of famiies, to assure the input of famiies at a eves of care, and to assure the adequate preparation 01 professionas for new coaborative roes.. PRIVATE HEALTH CARE PROVIDERS--to deveop systems which meet the needs of famiies and which encourage their

35 40 independence, by forging strong inkages between primary, secondary, and tertiary eves of care (physicians off ices, community heath services, cinics, community hospitas, heath maintenance organizations, chidren s hospitas, other teaching hospitas).. THE HEALTH CARE FINANCING SECTOR--to assure that a chidren with specia heath care needs have access to quaity heath care, and that support services are adequatey funded to enabe famiies to care for their chidren in their own homes and communities. Improving the financing of care must remain a top priority in our commitment to insurance coverage for a. We appaud Medicaid in the pubic sector and insurers in the private sector for ooking for mechanisms to improve and expand their coverage in cost-effective ways. We ask them to continue and strengthen these efforts. We aso must reach out to professionas in education, deveopmenta disabiities, socia services, vocationa services, and menta heath to assure that there is a coordinated approach to serving famiies. The Division of Materna and Chid Heath wi continue its partnership with other Federa agencies to faciitate a comprehensive approach to services that is famiy-centered, community-based, and cuturay sensitive. These major steps in buiding famiy coaitions, improving services for chidren and famiies within our States, and redirecting heath care doars in cost-effective ways wi provide a tremendous force in accompishing our goa of quaity care for a chidren with specia heath care needs. Let us work together to enabe these chidren to receive the kind of care they need and deserve. We must buid on our strengths and move forward. Using our knowedge and skis, and by cooperating, I know that we can make it happen--coordinated, famiy-centered, community-based care for a chidren who need specia heath care.

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