BUILDING COMMUNITY-BASED SERVICE SYSTEMS FOR CHILDREN WITH SPECIAL NEEDS: THE MICHIGAN LOCALLY BASED SERVICES PROGRAM

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VERNA J. NUMINEN, C.S. W;, M.PH. Bell Memorial Hospital, Michigan DIANNE L. HAAS, Ph.D., R.N. Children’s Hospital of Michigan LINDA YAROCH, M.PH., R.N., PATRICIA F M I C K , B.S.N., R.N. District Health Department #3, Michigan

The philosophy of the Michigan Department of Public Health, Division of Children’s Special Health Care Services (DCSHCS) program holds that children with special health care needs have a right to every opportunity for self-support and self-fulfillment. To assist families, the program historically has provided support with medical care and treatment payments. Likewise, local health departments have shared in the process of supporting families of children with special health care needs. A growing awareness that these families experience a variety of other needs not directly attended to by these mechanisms led the Division to respond further to those needs. The response was aimed toward increasing the capacity to locate clients and provide family assessments, and, where necessary, case management services at the local community level. The implementation, on-going program development, stabilization, and future trends of the Locally Based Services program are described from the varying perspectives of the state and a local health department.

STATEWIDE PERSPECTIVE AND ACTIVITIES Introduction and Development In the last 1970s and early 198Os, increased attention was given both at the national level and within the state of Michigan to the broad range of needs experienced by families of children with special health care needs. Legislative underpinnings had been established, which provided opportunities to the state and federal governments to develop programs to Both the first and second authors were previously employed by the Michigan Department of Public Health, Division of Children’s Special Health Care Services. Dr. Haas and Ms.

Numinen each served as project coordinators for the Locally Based Services program. Issues in Comprehensive Pediatric Nursing, 15:I 7-37. 1992 Copyright 0 1992 by Hemisphere Publishing Corporation

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meet the unique and varied needs of this population. The most important early pieces of legislation included the Education for All Handicapped Children Act 1975 (P.L. 94-142),the Maternal and Child Health (MCH) and Crippled Children’s Services (CCS) sections of Title V of the Social Security Act, and Medicaid (Title XIX of the Social Security Act).Taken together, these supports had the potential for building a framework that would strengthen the service structure for children with special health care needs and their families. Ireys (1981), in the Report of the Select Panel for the Promotion of Child Health, pointed to the fragmented and, in some instances, virtually nonexistent systems of support available to these children and their families. He noted that “one of the major medical resources for the States is the CCS program, which has a very long history of providing high quality medical services to handicapped children” (p. 332). Despite its history of dedicated services to families of children with chronic illness or handicaps through its Division of Services to Crippled Children it was clear that program development needed to be undertaken to improve the system of care (see Haas article in this issue). The purpose here is to describe the process used in the state to design and develop a state-local partnership system of family-centered, community-based service delivery. The result of these efforts is the Locally Based Services (LBS) program.

Historical Background President Hoover’s White House Conference on Child Health and Protection recognized the rights of children as the first rights of citizenship and pledged itself to these aims for the children of America in a document entitled “The Children’s Charter.” In this charter, the following right was defined for children with special needs: For every child who is blind, deaf, crippled, or otherwise physically handicapped, and for the child who is mentally handicapped, such measures as will early discover and diagnose his handicap, provide care and treatment, and so train him that he may become an asset to society rather than a liability. Expenses of these services should be borne publicly where they cannot be privately met. (White House Conference on Child Health and Protection,1931. )

This challenge provided a foundation for the development of Crippled Children’s programs throughout the United States and directed the responsibility for such programs to be a coordinated effort of the state, and district or county health departments. The Michigan Crippled Children Program was initiated by the state

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legislature in 1927,although services to this child population can be traced back to 1881 (Crippled Children Statistical Report, 1979). The agency’s task was, and is now, to locate, diagnose, treat, and care for children with chronic and special health care needs. In addition, the program’s goal always has been to remove barriers to appropriate health care so that all children with special needs may grow and develop to their full potential. The means by which these objectives are accomplished have certainly evolved over time. Parallel to the Division of Children’s Special Health Care Services (DCSHCS) program efforts, local health departments were also a major provider of community health services. This was clearly exemplified in the role of the public health nurse. This established group of health care professionals had long practiced within a paradigm that supported this program expansion.

Public Health Nursing Philosophy Providing care to families with special health care needs is at the heart of public health nursing. Public health nursing has long delivered family-centered, community-based care. Nursing service to individuals is viewed within the context of the family. It is recognized that the health of individuals can affect the health of all family members, and that the family provides an environment that influences the health of its members. The family also is seen as a significant entry point from which to identify community strengths, needs, and resources related to the provision of health care. Health promotion, health maintenance, health education and management, coordination, and continuity of care are utilized in a holistic approach to the management of the health care of individuals, families, and groups in the community (American Nurses Association, 1980). Relative to the delivery of community health nursing services, Michigan was no exception to the movement being seen in many parts of the country: a movement away from a community base and toward a diagnosis- or service-based clinic model of nursing care delivery that focused on the individual. Because of this, nurses were less able to utilize the concepts related to family assessment, coordination of services across the delivery system, advocacy, interagency coordination, and case management. Mechanisms in community health delivery have been altered as both legislators and the public have become increasingly concerned with how health care dollars are spent. Activities that at one time occurred under the very broad rubric of general public health nursing have become special programs delivered by public health nurses, usually in clinic

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settings. However, appropriate fiscal resources to support such specialization have not always followed. Local health departments welcomed the implementation of the (LBS)program because it assured a funding base and an organized approach for the provision of DCSHCS services among all local health departments. In addition, it focused on the entire family system and service delivery at the community level.

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LOCALLY BASED SERVICES The Locally Based Services (LBS) program was initiated in January 1984, via contracts with local health departments to provide program representation, family assessment, and case management services to Division clients. These included children 0-21 years of age who were medically eligible for the Crippled Children’s Program (CCP), clients 21 years of age and older with cystic fibrosis or coagulation defects, and children 0-16 years of age who were eligible for the Supplemental Security Income/Disabled Children’s Program (SSIIDCP) services.

Definition of the Service

LBS and its three program components were defined as follows: Locally Based Services: A method of providing community-based support for identifying the needs of chronically ill and handicapped individuals and their families and responding to their identified needs through a variety of mechanisms. Program Representation: Activities performed throughout the state of Michigan to promote the services provided by DCSHCS such that individuals in need of those services become aware of their existence. Activities include: public relations; community, family, and provider education; and case finding. Family Assessment: A process by which families are assisted in identifying their needs in all areas of living and their options in gaining assistance in having those needs met. Case Management: A process by which families are assisted to gain skills and independence in problem solving, management of the human services system, and self-advocacy. For each of these program components, goals and activities that were related to the stated purpose were identified. These are found in Figure 1. The LBS project served as the bedrock for other program expansion, such as the Specialized Home Care Program and Parent Participation Project. This initial project served to exemplify Michigan’s efforts to

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-

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MICHIGAN DEPARTMENT OF PUBLIC HEALTH

Dkislon 01 Children's S m l a i Heallh Care Services LOCailY Based Services

Fwls/Sewke~

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PROGRAM REPRESENTATION

FAMILY ASSESSMENT

CASE MANAGEMENT

;&: To assure that ail eligible iandicapped clrlidren wlll be Mentilid and ,iirdlnl lo receive Division services.

& I TO ! : Uentify

needs d Ihe child and amlly and lo delermine I lhey are recetvlng he most approprble sewkes.

a: To secure the mosl a p p r m l e

rstknieg include Conlinued educalion of the enrdied families. service providers and the coinniunitv. in order to iticrease their awareness a i d understanding 01 DCSHCS.

yiiviics include . Cdicclion 01 Inlormationusing a variety d meliids. lndvding inlerviews. In Ihe Idlowhy areas: llnanclal. soclai/emdlonal. phyjkal/heailh Care and deveiopmenlai/educalional.

y t k l i e s Inclu&: I. P r M s M 01 one or more d lhe ldlowing aclh'lties or acllons by deslgnaled case managers when lamly assessmenl or program representationhave nc4 adcqualely met tile need.

'.

?. lnleiprelatloii 01 Ihe Inlormalion by a puMic health nurse in order to Menl'ty appropride Intewenllons rdaied lo servlce

Coordinalion wilii agencies who Serve the handicapped population In order 10 achieve el:lcieiil sysleriis lor case linding. re1errai arId Service delivery (0eligiMe ciiildren.

0

Assurlng Ilia! niedtcal evaluations are conducted on poientbiiy handicapped children so that medical eilgibility may be delermined by DCSHCS

provision d basic Inlormallon regardlng available servkes: relerrai 10 approprble resources wnh concurrence ol lamity: relerrai to case management services.

I. Public idations activhies to iiicrease

visibilly. suppal and particlrxition in puWic hcallh programs serving iiarldicaiiped ciiildren. i. Serving as a resource lor ihe family In resdvlng processing and pi ocduial problems and questions.

clarity goals d planned inlerventions povwe ihe IamRy whh inrormallon about avalable serrrlces and oplbns

needs. I. inilialion 01 needed services including:

I.

iervices lor lhe chlld and lamsy based upon heir Individual needs.

1. Submission 01 specilied data to the

OCStICS Regional Ollice (RO) In order to: delermine linancbl digibility enrdl financlally eligible children inlo DCSHCS lor ihe reimbursement 01 medical care and lrealmeni services: autliorize requests In services during the child's dlglbllily period: 0 use Inlormallon abwc ldcntilied service needs and planned inlervenllons as the basis lor program planning and DCSHCS consultation.

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lor care, servlce rights and enllllemenr; prepare lamily lor rderrais to appoprlate resources; comdlnale services lo avokl dupllwlion and Contradkloq care and to establish common gcals and Identify responslWlhleslor the pwlskm d specRed servtes; repeserd the lamify when necessary lnnegdhlions lo obtaln necessary services (IndvJing ongdnp case management SeNkeS) by he most apprcprbte provkler; assisl ihe IamUy In developing sklis In problem identillcallon. exploration d ailernalkes and decision maklng.

Fig. 1. GoaMactivities of the Locally Based Services program. From Michigan Department of Public Health, Bureau of Community Services, Division of Services to Crippled Children. (1987). Report of locally based services: Year 3-1986.

develop a family-centered, community-based, coordinated care structure among states.

Foundational Beginnings Simultaneous to the efforts of LBS, a variety of other activities were being carried out around the country, which would eventually lead to a national movement aimed at developing family-centered, communitybased, coordinated care structures for children with special health care needs. In Washington, DC, the Association for the Care of Children's Health

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was funded by the Bureau of Maternal and Child Health to carry out a project that would culminate in the articulation of the elements of family-centered care (Shelton, Jeppson, & Johnson, 1987). At the Vanderbilt University Institute for Public Policy Studies, a 5-year effort was underway to develop specifications for a national health policy for children with chronic illnesses and their families (Hobbs, Perrin, & Ireys, 1985). At the University of Iowa, the National Maternal and Child Health Resource Center was engaged in work to identify exemplary case management models being used throughout the country to support families of children with special needs (Gittler & Colton, 1987). The staff of the Michigan DCSHCS, under the leadership of Dr. William Clexton who served as the division chief from 1982 to 1988, was involved in each of the efforts described above. Michigan’s efforts exemplified many grass roots efforts that would be supported through the 1980s by Dr. C. Everett Koop, then Surgeon General of the United States, to develop a national model of care for children with special health care needs. The model would become one of family-centered, community-based, coordinated care. The goal was, and remains, to institute such a model in every setting in the country that provides care to children, particularly those with special health care needs. LBS was Michigan’s beginning effort. It has served as the foundational model from which subsequent family-centered care efforts have emerged. These other efforts, such as the Parent Participation Project and the Specialized Home Care Program, are described in this issue.

IMPLEMENTATION OF LOCALLY BASED SERVICES To prepare for the implementation of the LBS, certain resources had to be in place to ensure its success. In addition, certain judgments needed to be made about the method of implementation. Finally, the way in which the staff of the local health departments would be supported to acquire and utilize new skills had to be determined. Each of these tasks is discussed.

Garnering Resources Although some local health departments (LHD) were involved, over time, in the identification and enrollment of clients into the Crippled Children’s Program, this activity was sporadic and LHDs received no remuneration for the services. To engage all LHDs in a uniform, statewide effort to locate, assess, enroll, and provide case management services to families of children with special needs, fiscal support needed to be established. Because families and their children were a part of the

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constituency of local communities, it was determined that local jurisdictions should contribute financially to the program. The intent was to approximate shared fiscal participation in the project of a 90/10, state/ local split. The Michigan state legislature was approached about the potential merits of the program-its goals and objectives-and a request was made to designate a specific line in the Division budget to support LBS. This request was approved and start-up monies totaling $1.2 million were appropriated.

Identification of Phases During the initial planning for LBS, a state-of-the-art review was carried out to determine if there were currently existing models that could be replicated. Because there were none, certain assumptions were made before the actual implementation began. First, because these efforts were essentially experimental in nature, the project needed to be implemented in phases. Instead of attempting to bring the project up statewide immediately, a three-phase implementation was planned, which was anticipated to occur over 3 years. Second, it was decided that each phase should be targeted for implementation at a mix of LHDs, including rural and urban, and single- and multicounty jurisdictions. The local health system in Michigan is composed of 53 LHDs covering 83 counties and the city of Detroit. Some are single-county-based departments and others are multicounty health districts, with the Detroit City Health Department being the only free-standing city health department in the state. Another assumption that was held strongly by Division staff was that each member of the staff needed to be very open to feedback from LHD staff, families, and others about the experience. Although the phases were intended to unfold as identified, some alterations had to be made, thus protracting the process over 5 years. Despite the time variations, training and consultation support was organized and carried out for local health department administrators, clerical support, and public health nurses. To prepare the staff of the LHDs to assist families through the services provided with the project, it was incumbent on DCSHCS to provide local staff with training. In part, the training was aimed at familiarizing them with the contents of the Division’s programs and the LBS manual, which had been written as guidance for their activities. Additionally, newly emerging concepts related to family-centered care were introduced. Training began for three groups of LHDs, identified for each of the three phases, within a few months of the execution of signed contracts between DCSHCS and the LHDs.

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Training and Consultation Support Each LHD initially participated in a full week of training. This was followed by a site visit from the DCSHCS regional team to reinforce new information and assist in problem solving related to implementation. Since initial implementation, the regional teams have remained available for on-going consultation and technical assistance. On an annual basis, staff development or in-service programs are provided to the LHD staff, updates on Division policies are provided, as well as current clinical information and trends in the care of children with special health care needs.

ON-GOING PROGRAMMATIC DEVELOPMENT As the implementation of LBS progressed, the project was analyzed and evaluated. Staff critiques, suggestions, and reported problems were addressed through revising the program as it was being implemented.

Meeting with Consumers and Legiskators As LBS was implemented, families were notified of their childrens’ eligibility for program services and were invited to apply. If they wished to apply, they were sent some information on the program and a family questionnaire to complete prior to their family assessment. This document was intended to provide the staff with background information, which they could then use as a data base for the subsequent family assessment. One set of questions posed to the family were psychosocial in their orientation. The questions obtained information about various coping styles that the family might engage in and whether they found them to be useful. However, some families took offense to the questions and felt they were entirely too personal and irrelevant to the care needs of their children. As a result, some of these families approached their legislators as advocates and a series of meetings was held. These meetings began a process by which an open dialogue was established among families, fiscal agents, and Division and local health department staff. The initial meetings resulted in early and helpful input from families, which led to a revision of some of the initial forms being used, before implementation began with the second group of LHDs. In addition, one of the mothers who had instigated the first meeting became a strong ally of the program and participated in presentations at national conferences with DCSHCS staff where information on LBS was presented. This early involvement with constituents proved to be fortunate as the Division moved forward with full implementation.

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Statewide Implementation Event with a well-defined, planned process of events, progress with the full implementation was thwarted at Phase 111, due mainly to a loss of financial support. Phase I11 originally had been targeted for November 1985, and would have completed the implementation process. Although the funds allocated from state appropriations remained intact, and increased by about $700,000 in the first 2 years, some local health departments were not experiencing such favorable times. Therefore, it became difficult for some LHDs to take on the project and meet their expected support goal of 10%.Two of the health departments were large, urban programs, which, taken together, served a substantial portion of the population. Therefore, it was important to analyze ways in which implementation could be facilitated. One approach was to organize and streamline the processes of outreach and family assessment. LHDs had the option to choose how to organize the delivery of family assessment and case management in ways that were best suited to their existing structure and resources. For example, providing office-based versus home-based family assessments was seen by some to be a more cost-effective approach. In addition, other means of fiscal support were analyzed, such as in-kind utilization of local resources. With a spirit of cooperation and creative problem solving, all local health departments were enlisted in the program, and LBS was fully implemented, statewide, by June 1988.

Annual LBS Training The DCSHCS staff believes that it is the state health department’s responsibility to provide local health department staff with updated information related to LBS. This information needs to relate to the specific task of serving clients, and to increase the awareness of national trends related to the care of children with special health care needs and their families. After initial LBS trainings occurred, new legislation was enacted at both the state and federal levels and rapid changes in the entire health care system required on-going updates to be provided to the LHD staff. Therefore, a committee responsible for planning the statewide LBS inservice training was formed. Through the mechanism of annual trainings, the Division has covered a broad range of topics, such as utilizing nursing diagnosis for documentation purposes and assisting a family with an SSI review based on the Zebley vs. Sullivan decision.

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STABILIZATION OF THE PROJECT

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As with any new and major endeavor, the LBS project went through a period in which the program required stabilization before it could be considered an institutionalized service component. Some events occurred that actually threatened the program’s existence, whereas others steadied its on-going implementation. What follows is a description of those events and their contribution to what are recognizable features of LBS today.

Threats to StabZzalion During the mid-l980s, the state-local public health partnership concept was tested by the increased urban-rural competition for diminished revenues. Increasing demand for new and different services statewide to respond to the effects of crime, domestic violence, drugs, and other ramifications of poverty emerged. The “new poor,” the underemployed, unemployed, and under insured comprised a new group whose access to health care had been curtailed severely. Families previously accustomed to accessing health care with employer-sponsored health insurance were now without such coverage, but could not qualify for Medicaid, nor were they able to pay for their health care out of pocket. These unanticipated and unpredicted external influences increased the demands for services through DCSHCS. This, along with the anticipated effect of improved case finding through LBS, began to strain the system to a greater degree than had been expected. Thus, in seeking to create a uniform program that would render services on an equitable basis, irrespective of their place of residence, the stabilization of LBS was faced with many challenges. One of these challenges was the variability of local resources found in the state. The variability stemmed from the communities’ economic base, medical and allied health care distribution, cultural perspectives in utilization of public resources, and local response to needs in the community. The real threat to the statewide implementation of the LBS concepts was that some local health departments might possibly withdraw from the program before others had been brought into the project. To avert such a situation, it was determined that a strategy that would strengthen the state-local commitment to evolving LBS needed to be created.

Development of the LBS Work Group An effort was launched, in early 1987, to analyze LBS program efforts to date, and to determine what efficiencies in service delivery could be

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identified. In a true spirit of joint problem solving, a state-local work group was convened. Referred to as the LBS work group, it was composed of representation of local health officers, medical directors, and LBS nurse coordinators, together with state administrative and clinical personnel. The goal was to closely scrutinize the respective activities of the state regional offices and the local health departments, and to document the associated costs incurred at the local level related to program delivery. The deliberations of this group and the statewide cost survey designed by the group were compiled into a report to the legislature, through which the program benefits and associated costs were thereby documented. This initiative proved valuable to the institutionalization of the program. The legislature took action to restore and increase the LBS lineitem appropriation. The requirement that an annual report of statewide activity be submitted providing data relative to services rendered was incorporated into the boilerplate language of the appropriations bill. In addition, creative strategies were identified, which assisted local health departments in meeting their 10% fiscal obligations. The experience was a clear demonstration of the synergy surrounding mutual effort. Other recommendations from the group were subsequently implemented, which delegated greater decision-making authority to the LHDs. The work group served as a model for problem solving and program planning based on broadly representative concurrence about the program’s overall direction and goals. Henceforth, state-level program design and standard setting became established within a context of local acceptability.

Standards Development and Program Reviews A systematic and consistent approach for evaluating the LBS activities of the local health departments was needed to provide the LHD staff with an objective benchmark from which to analyze their progress in meeting the program’s goals. Therefore, standards were developed that related to the family assessment and case management components of the program. Standards reflected structure, process, and outcome criteria. As the standards and criteria were developed, input was requested from local LBS staff. The method selected to conduct the analysis was a record review. Assistance also was sought from a statistician so that the number of records reviewed reflected an adequate confidence level in the data. The primary intent of this endeavor was to work with LHD

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staff to ensure quality and not to serve as an audit tied to their contract dollars. Therefore, the activity was referred to as a program review. The 6 nurse consultants employed by the Division were each assigned a portion of the LHDs to visit to carry out the program reviews. Each review began with an entrance meeting, in which the nurse consultant explained the purpose and process of the program reviews. In addition, this opportunity was used to update staff on new information or activities that were occurring at the state and national levels, which related to serving families of children with special health care needs. The entrance conference also provided a mechanism for meeting jointly with program staff and administration. The nurse consultant then spent 2-3 days reviewing case records. The reviews were divided between records of those families who had and those who had not received case management services. At the end of the review process, an exit meeting was held, in which a discussion of preliminary findings was provided. Data were then analyzed statistically anda final written report was forwarded to the local health department within 2 weeks of the site visit. The outcomes of this program review provided DCSHCS with helpful information that influenced future form revisions and documentation requirements. One outcome of this process was to assist LHDs, through the process of reviewing actual cases, in the importance of focusing on the entire family system. Simultaneously, national leaders in the field were articulating the importance of the family as the constant in the child’s life. Increased opportunities were available to those involved in LBS to interface with others engaging in similar activities throughout the country.

CASE EXAMPLE OF IMPLEMENTATION Because the LBS program was implemented in phases, certain characteristics of the local health system were analyzed to provide a mix, so that large and small, urban and rural, and single-county and multicounty departments were represented in each phase. As an example, one district health department, which is a rural, multicounty health district, located in the northern part of the lower peninsula, is described. It was among the 10 LHDs that comprised Phase I of LBS implementation. Activities in program representation, family assessment, and case management are carried out by an LBS team consisting of a LBS nurse coordinator, other public health nurses, anda clerical staff referred to as the LBS representative. Staffing models varied across the state from a specialized team, who solely provided locally based services, to an integrated staffing model, where staff responsibilities covered a variety of program areas.

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In this four-county, rural health department, an integrated delivery model has been used. The core activities of the LBS representative and coordinator are supplemented by county public health nurses. The staff's knowledge of local resources, such as community mental health services, intermediate school district services, and the medical community, is essential in the provision of family-centered, community-based care. The importance of the implementation of LBS coupled with a local staffing model, is evidenced by the increase in services to families pre- and post-LBS. For example, from 1980- 1990, DCSHCS diagnostic services provided to children living in the District increased by 194 % , whereas enrollment into the DCSHCS program increased by 143 % . Program representation activities, which are carried out by all LBS staff, include outreach and determination of medical eligibility. Outreach activities generally are educational in nature and are aimed at increasing local awareness of DCSHCS services and identification of eligible recipients. Determination of medical eligibility is initiated by referrals from hospitals and DCSHCS field clinics, or facilitated by a diagnostic referral by the public health nurse. Family assessment is an annual DCSHCS service that is offered upon enrollment. Given that the child has an approved medical diagnosis, the family is invited into the health department for assessment of the family. During the visit, the family and the nurse have an opportunity to assess the strengths and needs of the child and family members, with a focus on financial, sociallemotional, physical/health care, educational/ vocational, and developmental areas. Upon completion of the family assessment, some families may benefit from on-going assistance from the nurse to varying degrees. Thus, case management services may be provided intensively for a period of time, or may be requested periodically by the family throughout the year. The DCSHCS program estimates that 15% of the families will be in need of case management services. Public health nurses enter into a relationship with families upon assessment and provide care as needed, ranging from simple to complex treatment. Establishing the LBS model for this district health department was relatively easy, because a long history of commitment to the DCSHCS population existed. LBS provided the public health professionals within the community with a vehicle for organizing services and a means of garnering additional fiscal resources.

ON-GOING PROGRAMMATIC DEVELOPMENT As with any new endeavor, the implementation of LBS has brought about changes within the system of local care and the people that comprise that system. In a positive way, LBS has improved the capability of

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LHDs to be increasingly responsive to the needs of the pediatric special needs population. Additionally, LHDs have been provided with the means to increase their awareness of the wide array of services available to families of children with special health care needs.

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Evolving Roles, Coordination and Advocacy LBS challenged public health nurses to expand their scope of advocacy efforts for families to include schools, other community and voluntary agencies, and statewide programs. The Division’s regional office provided information to assist nurses with this task; for example, state laws, parents’ rights, services to be accessed, and the role of an advocate were operationally defined and discussed. Nurses were empowered by this knowledge and began questioning the services available to special needs children in their communities. Sharing the information with parents supported and increased parents advocacy efforts for their children. The unification of the parents’ efforts, the LBS nurse, and other professionals on behalf of the child was referred to as care coordination. Sometimes parents lacked the knowledge or the time it took to secure services for their children. Nurses are an important link between families and the services to which they are entitled. The nurse’s role was to initiate the appropriate contacts to address an issue, and to teach the families the process at a time when they are able to assimilate the information. Families could call LBS at any time and request this assistance. Parents were made aware of the right to accept or decline services for their children. When providing care coordination, the nurse had to constantly monitor parents’ responses to avoid violation of their rights. Explaining the services available and presenting options on how to access services allowed the decision to rest with the parents. The reward for all involved was to see children progress because needed services were accessed, or to see children more comfortable because proper equipment was obtained.

Service Delivery Model Adjustments During Stabilization. Although there had been a history of commitment to children with special health care needs and their families on the part of this local health department, new approaches in service delivery were being tried. Adjustments were made to the service delivery model as staffing changes occurred, and the knowledge base necessary to provide nursing services to this program was recognized. Currently, one to two nurses and one program representative per county are fully oriented to DCSHCS/LBS. All of the LHD’s nurses and many ancillary staff have a basic under-

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standing of the program and how to initiate services. Keeping staff current in their knowledge of LBS is an important component of program outreach and representation, which assists in establishing the program as part of a continuum of service available within the community.

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Established Role Within the Community The concept of LBS is successful because it involves and links local resources to families of children with special health care needs who reside in that community. The families and staff know each other because of frequent contacts either by telephone calls, office visits, or community contacts such as Little League and the grocery store. Local staff are familiar with schools, therapists, specialty physicians, hospitals, durable medical equipment (DME) suppliers, and volunteer agencies, and can explain these services to parents. They also advocate for families to the state staff, because they have seen the children, spoken with the parents and providers, and, thus, have a greater understanding of the needs of the children and their families. These interactions are crucial to families as they try to secure services for their children. One of the services that has evolved from having LBS in the community is the Adaptive Equipment Clinic. Parents and their special needs children meet with an occupational therapist from the Intermediate School District, a physical therapist from the local school district and the local hospital, an orthotist, representatives from a DME supply company, sometimes the children’s physician, and a public health nurse representing LBS. There is no charge for this service. All professionals feel it is beneficial to provide coordinated care to families. The goal is to provide equipment that is functional, correct, and meets the needs of the children and their families. Everyone is an active participant in the decision-making process. Problems with equipment are minimized because everyone is aware of the equipment purchase and expectations for its use. These examples demonstrate the effectiveness of community-based services that focus on coordinating care to meet the needs of families. Great strides have been made in the last decade to improve services for this population, but much work remains to be done in the future. Znvolvement with National Activities

Michigan has had a long history of being very proactive in the care of children with special needs. Along with the efforts being described here, other initiatives have occurred. For example, since 1972, special education services have been available for children and young adults ages

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birth-26 who were in need of them. In 1983, Public Act 249 was signed into law, providing a family support subsidy for families of children who are severely mentally or multiply impaired or have autism. The subsidy program is intended to pay for special expenses that families incur while caring for disabled children. This financial support may prevent or delay institutionalization or other residential, out-of-home placements. In 1982, the Report of the Surgeon General’s Workshop on Children with Handicaps and Their Families was published (U.S. Department of Health and Human Services, 1982). This was the first report from a series of Surgeon General’s conferences that has brought to national attention the unique needs of this population. The intent was to call for the establishment of a national agenda to respond to those needs, and to stimulate a commitment to family-centered, community-based, coordinated care for children with special health care needs. In 1986, the Division was contacted by the staff of the Association for the Care of Children’s Health to participate in the process of outlining the elements of family-centered care for children with special health care needs (Shelton, Jeppson, & Johnson, 1987). In addition, DCSHCS staff assistance was sought to solicit parents of children with special needs in Michigan who would be willing to be listed in a parent resource directory, which is now in its fourth edition (Schmitt, 1991). The purpose of the directory is to facilitate networking and collaboration among those caring for or providing support services to children with special health care needs. During the summer and fall of 1986, Division staff also were involved in a project with staff from the National Maternal and Child Health Resource Center, University of Iowa, concerning the nature and extent of case management services found among State Title V programs. LBS was identified as one of several exemplary models in the United States of family-centered, community-based care with a case management component. A meeting was held in Chicago in the fall of 1986, with leaders from around the country, to specify how information regarding both the Title V and the model programs could be disseminated. The meeting served to clarify salient components that identified programs as familycentered, community-based, coordinated care structures. The outcome of this endeavor was two publications: The Title V State Programs and the Provision of Case Management Services for Children with Special Health Care Needs; and Community-Based Case Management Programs for Children with Special Health Care Needs (Colton & Gittler, 1986; Gittler & Colton, 1987). Following the efforts described above, a national conference, “Com-

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munity Based Case Management Programs for Children with Special Health Care Needs,” was held in January1987 in Washington, DC. This was an opportunity for the LBS program to be introduced to a national audience. In addition, Representative Debbie Stabenow, the Michigan legislator who sponsored the Family Support Subsidy bill, presented information related to that program. Last, staff from the Michigan Department of Education presented information on the “Michigan Model ,” a curriculum for grades K-12, which provides youngsters with information on a broad range of health-related concepts. In June 1987, the “Surgeon General’s Conference-Campaign 87” was convened in Houston, Texas. The conference’s primary focus was to provide a forum in which the seven action steps, which established a platform for a national agenda for the development of family-centered, community-based. coordinated care for children with special health care needs, could be unveiled. The seven action steps are enumerated in Table 1. The LBS program was highlighted at the conference as an example of Action Step Two, which encouraged the building of community-based service systems. Throughout the conference, many programs were described that exemplified the intent of various action steps. This endeavor by the Surgeon General provided a focus for the subsequent national and regional conferences that occurred over the next several years. Accordingly, information regarding LBS was presented at the Surgeon General’s Conference in 1987 and 1988. In1987, 1988, and 1989, in Asheville, North Carolina, New Orleans, and San Francisco, respectively, the Michigan program staff participated in a series of regionally based conferences, sponsored by the Office of Maternal Child Health, Department of Health and Human Services, to discuss the applicability Table 1. Surgeon General’s Action Steps for Implementation of Family-Centered, Community-Based, Coordinated Care 1 . Pledge a national commitment to all children with special health care needs and their families. 2. Encourage building community-based service systems. 3. Assist in ensuring adequate preparation of providers of care. 4. Develop coalitions to improve the delivery of services. 5. Establish guidelines to control costs of services. 6. Encourage and support the development of adequate health care financing. 7. Continue to conduct research and disseminate information. Note. From U.S.Department of Health and Human Services. (1987). Surgeon General’s Report: Children with special health care needs Campaign ‘87. Commitment to: family centered, cornunify based, coordinated care (DHHSPublication No. HRS./D/MC 87-2).

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of the LBS concepts to other states. Several states also requested and received consultation from Michigan program staff, which assisted them in developing family-centered, community-based service models. Consultation was provided to Texas, Montana, and Idaho. The evolution of LBS has coincided with many other exciting endeavors throughout the country. Collectively, these endeavors represent model approaches so that, with state and local cooperation, every special needs child in the nation could receive family-centered, communitybased, coordinated care. In the future, opportunities for continued improvement in the system will be present. A description of some of those opportunities follows.

EVOLUTION OF THE SERVICE MODEL Long ago, in a far less (or perhaps differently) enlightened time, parents of children with severe handicaps were often told to “put your child away, go home, forget about them, and get on with your life.” From there, we have moved to an era in which health care professionals are actively seeking partnerships with parents in caring for these children. These partnerships provide opportunities for sharing policy decision making, at several political levels, and ensuring quality providers.

Improving FamilyProfeessional Partnerships In 1987, the Division took a giant step forward in cementing familycentered care into its philosophical foundations by hiring a parent as a full-time staff member. The role of this individual has been to function as the director of the Parent Participation Program. This program has two aims: to develop mechanisms by which consumer input on policy issues can be brought to the attention of Division administration, and to implement Family Support Networks across the state, which are tied to the local community, often via the local health department’s LBS program. The benefits of the addition of the Family Support Networks to the Division structure, and to families throughout the state, have been immeasurable. Family input is now actively solicited in all policy deliberations. The co-chair of the DCSHCS advisory committee is the parent of a child who receives program services. At the local level, parents and LBS coordinators serve together on local committees and boards, which influence the structure of community support. A toll-free hotline has been installed so that any parent in the state who has a question or is in need of support will not have to incur a long-distance phone charge to access the Division or any of its representatives.

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The most current positive implication has been the awarding of two grants-from the Bureau of Maternal and Child Health, and the Skillman Foundation-to develop a system of family support specific to the urban, multicultural population. The DCSHCS Parent Participation Program is one of the hallmarks of Michigan’s family-centered care efforts, and its endeavors will be felt by children and families for generations to come.

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Decentralization of Decision-Making Authority At the beginning stages of LBS implementation, final decision-making authority and the raising of issues for policy deliberation came mostly from the Division Central Administration. Clearly, if the service structure is to be family-centered and truly community-based, the foci of decision making had to be decentralized to the greatest extent possible. Therefore, several years ago, the Division transferred the decisionmaking authority related to many programmatic issues from Division regional offices to the local health departments. At the same time, local health departments have demonstrated increased commitment to the program, and parental input has been actively sought and used. These transfers of authority have benefitted families by: (a) creating improved time efficiency in the enrollment process; (b) providing them with immediate access to information regarding program services; and (c) informing them about resources found in local health departments and communities.

The Provider Approval System-Assuring Quality In Michigan, services to families who are DCSHCS recipients are delivered through a model of private provider services. Approved providers are composed of physicians, hospitals, durable medical equipment suppliers, home health agencies, outpatient clinics, and pharmacies. Authorization and approval of providers was frequently handled on a case-bycase basis, which was laborious and time consuming. As an alternative to the existing structure, a different mechanism of provider approval was established. In late 1989, a Provider Approval Taskforce was formed with the charge to develop standards and criteria for provider approval. The provider types included physicians, hospitals, children’s multidisciplinary specialty (CMS) clinics, and home health agencies. The taskforce was composed of approximately 100 participants who were assigned to four subcommittees according to provider type. A broad base of representation from both state government and the private

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sector was achieved. The work of the committee at large transpired over several months and culminated in the production of a document titled System for Approval of Providers of Services to Children with Special Health Care Nee& (Bureau of Community Services, DSCC, 1990). The component parts of the document are now being implemented in phases. The approval and enrollment of the CMS clinics have been nearly completed, with those for physicians, hospitals, and home health agencies in various stages of progression. When fully implemented, a system that provides a greater level of quality assurance than previously will be in place. Each set of criteria create an interface between local community support structures by involving the local health department in the process of securing approved providers for the clients they mutually serve. These efforts have served to further promote a coordinated system of community-based care for children with special health care needs.

FUTURE TRENDS Challenges for the future include promoting the practice of familycentered interventions among all human services programs. We are challenged to move the human services delivery system from a traditional deficit-oriented approach to care to a family resource model that places primary emphasis on the strengthening of individual and family functioning. Parents need to be active participants in any planning for the care of their children. Agencies need to involve parents in the planning process rather than informing parents of their plan for service. Coordination of efforts, consolidation of time, and consideration of the needs of the children and families must be the goals for the future. Continuation of services at the local level is a critical component in ensuring that these goals are met.

In retrospect, the planning, implementation, and on-going development of the LBS program has been a herculean task. However, it has provided the citizens and service providers of this state with a viable model of family-centered, community-based, coordinated care. It represents a stable framework of community support for families that struggle with the day-to-day issues of raising and caring for children with special health care needs. The LBS foundation has provided a structure to which additional program development could be anchored. The foundation is se-

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cure, and the building of a broad-based structure of family-centered care continues in Michigan.

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REFERENCES American Nurses’ Association, Community Health Nursing Division. (1980). Conceptual model of community health nursing. (Publication No. CH-10). KansasCity, MO: Author. Bureau of Community Services, DSCC/Children’s Special Health Care Services. (1990).Systemfor approval of providers of services to children with special health care needs: Physicians, Hospitals, CMS Clinics, Home Health Agencies (Rep. o f the Provider Approval Task Force). Lansing, MI: Author. Colton, M., & Gittler, J. (1986). The Title V state programs and the provision of case management services for children with special care needs. Iowa City: National Maternal and Child Health Resource Center. Crippled Children Program (1977-1979). Statistical Report. Gittler, J., & Colton, M. (1987). Community-based case management services for children with special health care needs: Program models (2nd ed.). Iowa City: National Maternal and Child Health Resource Center. Hobbs, N., Perrin, J., & Ireys, H. (1985). Chronically ill children and their families. San Francisco: Jossey-Bass. Ireys, H. (1981). Health care for chronically disabled children and their families. In Better health for our children: A national strategy. The Report of the Select Panel for the Promotion of Child Health, U.S. H.H.S., Vol. IV 1981. Michigan Department of Public Health. (1980). Crippled children program, 1977-1979Statistical Report (Report of Biennial Expenditures). Lansing, MI: Author. Michigan Department of Public Health, Bureau of Community Services, Division of Servicescontin to Crippled Children. (1987). Report of locally based services: Year 3-1986. Lansing, MI: Author. Schmitt, (1. (1991). Parent resource directory (4th ed.). Washington, DC: Association for the Care of Children’s Health. Shelton, T.L., Jeppson, E. S., & Johnson, B. H. (1987). Family-centered care for children wirh special health care needs. Washington, DC: Association for the Care of Children’s Health. U.S. Department of Health and Human Services. (1982). Repot? of the Surgeon General’s workshop on children with handicaps and their families (DHHS Publication No. PHS-83-50194). Washington, DC: U.S. Government Printing Office. U.S. Department of Health and Human Services. (1987). Surgeon General’s Report: Children with special health care needs, Campaign ’87, Commitment to family-centered coordinated care for children with special health care needs (DHHS Publication No. HRSIDIMC 87-2). Washington, DC: U.S. Government Printing Office. White House Conference on Child Health and Protection. (1931). The Children’s Charter. Branch, IA: Herbert Hoover Library.

Building community-based service systems for children with special needs: the Michigan Locally Based Services program.

The philosophy of the Michigan Department of Public Health, Division of Children's Special Health Care Services (DCSHCS) program holds that children w...
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