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ADVISORY COMMITTEES FOR AGENCIES THAT PROVIDE SERVICES FOR CHILDREN WITH SPECIAL HEALTH-CARE NEEDS
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BRYN FORTUNE JANET OLSZEWSKl Michigan Department of Public Health PAUL SHAHEEN Michigan Council for Maternal and Child Health
The Children’s Special Health Care Services Advisory Committee is an advisory group that includes stakeholders in the delivery of care for children with special health-care needs. An emphasis has purposely been placed on consumer participation to ensure adequate voice and balance with other provider, legislative, and bureaucratic interests. The Advisory Committee has assumed an aggressive and complete role in reviewing and recommending every aspect of the program. As a result of this active co-ownership, the program has repeatedly survived threats of serious budget cuts and reductions to its base. Agreement between providers and consumers on values. structure, and operational needs has been reached. A win-win approach has been possible, not only in the planning and growth of the program but also in the policy arena, legislatively, and with the administration.
INTRODUCTION Increasing demands are being placed on social service agencies and governmental bodies to provide family-centered, community-based services that are actually competent. Agencies may struggle to respond to this demand, especially if consumers do not have a voice in the establishment of services. The purpose here is to describe the development of the medium of the Advisory Committee as one way of being responsive to community and family needs for services that are relevant, userfriendly, and culturally competent. Included here is a description of the establishment of a specific Advisory Committee for the State of Michigan Children’s Special Health Care Services (CSHCS) Program.
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BACKGROUND AND HISTORY The CSHCS Program in Michigan is grounded in state statute, specifically Public Act (PA) 368 of 1978, also known as the Public Health Code. The program is still titled “Crippled Children’s Program” in the statute, and the statutory base goes back to 1927, when the Crippled Children’s Commission was created to administer a program of medical services to children with orthoped~cconditions. At the time of the Public Health Code revision in 1978, the Michigan Department of Public Health had fully assumed that administration of the Crippled Children’s Program and a decision-making body such as the commission were no longer relevant. Nevertheless, outside input to the program’s policy making and operations was viewed as important, and Public Act 368 of 1978 created an advisory committee to succeed the commission. The specific text of the legislation is as follows: 333.5811. Crippled children’s advisory committee; creation; appointment of members; successor to the Michigan crippled children commission; subject to S. 333.2215; election of chairperson and vice-chairperson; meetings; travelling expenses; conferring with and advising department.
Sec. 5811. (1) The crippled children’s advisory committee is created in the department. The committee consists of 5 members appointed by the governor, upon recommendation of the director. (2) The committee is the successor to the Michigan crippled children commission and is subject to Section 2215. (3) The committee annually shall elect a chairperson and a vicechairperson from its members and shall meet on call of the department. (4) The members of the committee shall serve without compensation, but shall be reimbursed for actual and necessary travelling expenses pursuant to Section 1216. (5) The committee shall confer with and advise the department as to its functions under this part. (PA 368 of 1978)
The department maintained the legally required advisory committee for a few years, but eventually the committee became nonfunctional as the program experienced an increased demand for its services and a greater need to develop sound administrative systems. Staff energy was directed elsewhere, and the committee was eliminated under a sunset provision
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(Section 333.2215 of PA 368 of 1978) of the Michigan Public Health Code. In 1990, the Crippled Children’s Program, now known as the Division of Children’s Special Health Care Services (CSHCS), reviewed its position as a program committed to developing family-centered, community-based care. In the decade of the 1980s, the program had grown from one serving 2,800 children to one serving over 17,000 children. It had also become the single largest program in the maternal and child health area of the department, with expenditures over $50 million for medical care and treatment in 1990, which was nearly three times what was spent in 1980. Several other changes had also taken place in the program’s environment. Although the population of Medicaid-eligible children served by the program was growing, medical technology was developing at a fast pace, affecting both the available treatment protocols for children and their cost. The mental health system was developing programs to serve developmentally disabled children at home, the Katie Beckett waiver programs were developed, and Public Law 99-457 Part H was enacted. Furthermore, health-care cost containment and reform had begun to gain momentum. The administrators of the program and the department realized that the simple program of the past no longer existed. Furthermore, it was recognized that to keep pace with the sophisticated, high-tech healthcare arena, much more than efficient internal administration of the program was needed. Administration thus made a decision to reconstitute an advisory committee as a formal way of soliciting input to better respond to the emerging needs of the population with new initiatives for care.
Advisory Committee Structure and Process The Department decided to form a committee to advise the program on matters of consequence, including efficiency, effectiveness, and quality assurance issues. Given the nature of the group, bylaws for the committee were not established. Rather, a program policy to govern its structure and actions was established. Membership
Given the myriad of issues facing the program and the number of organizations that touched the lives of children with special health-care needs, it was easy to determine that a five-member committee would not be sufficient to bring together, in one place, all the interests that should be brought to the meeting table. Therefore, the program chose to expand
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membership of the Advisory Committee from the previously mandated 5 members to 25 members. Membership of the committee includes individuals from families, providers, state departments, local health departments, insurers, the legislature, and advocacy organizations. The membership roster can be found in Table 1. Membership was constructed to have families, providers, and advocacy organizations share relatively equal representation on the committee, with five representatives for each of these groups. This was done to balance the interests and to ensure family participation. The actual number of 25 reflected broad enough representation from the groups without becoming unwieldy. Such broad representation is needed to ensure attendance (e.g., family representatives can have difficulty attending a full schedule of meetings due to the demands of the family). Blue Cross/Blue Shield of Michigan is the sole private insurance representative because the vast majority of the program’s clients who do have insurance coverage have this carrier. The legislative representative of three individuals reflects membership from both the House and Senate Appropriations Committees as well as the legislative policy staff. Local health departments currently perform case finding, assessment, and case management functions for the program; hence, they have one representative to the committee as well. The remaining members are from other state agencies who may provide service for CSHCS families and with whom it is essential that our program coordinate. The one exception in this group is the Department of Management and Budget, whose role is to prepare and defend the governor’s budget each year. It was believed important ’IBble 1. Membership Roster-Division of Children’s Special Health-Care Services Advisory Committee Families Providers Insurer Advocacy organizations Department of Mental Health Department of Social Services (Medicaid) Department of Management and Budget Department of Education Michigan Association of Local Public Health Legislative agencies
Total
5 5 1
5 1 2 1
1 1
3 25
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to give the budget staff every opportunity to keep apprised of the Frogram’s issues.
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Oficers
Originally, the structure called for a chairperson and vice-chairperson appointed by the Director of the Department of Public Health. Since establishing the committee, the structure to use co-chairpersons was incorporated instead. The parent of a special needs child serves as one of the co-chairs and the executive director of a maternal and child health advocacy organization serves as the other chair. One reason the change was made was to actively convey that families have an equal power share with other organizations and interest groups. A second reason was that as a practical matter, two co-chairs allow strong leadership of the committee regardless of one person’s constraints on availability. Subcommittees
Although the Advisory Committee has only one standing committee, a steering committee, it has worked effectively throughout the last 2 years through four ad hoc subcommittees. These subcommittees were formed to focus on major issues the Division faced in 1990-1991 and, due to their ad hoc nature, can be reviewed and refocused as needed. Currently, the subcommittees are Public Education, Trust Fund, Administrative Rules, and Provider Approval. A steering committee, composed of the co-chairs and the subcommittee chairs, advises the department when it is not possible to consult the full committee and sets the course and direction for the full committee. The Public Education subcommittee focuses its work on developing a set of recommendations on how the program can improve its visibility among potential client families, since even after 65 years of existence, many professionals and families are unaware of it. The Trust Fund subcommittee develops recommendations regarding the use of the DCSHS program trust fund, established roughly 40 years ago initially through a bequest of securities, as well as fund growth and management. Although the program uses interest income from the trust for special projects, CSHCS neither actively solicits donations to the trust nor actively manages its growth. Additionally, use of the funds has historically been at the division chief‘s discretion. This committee now advises the division on proposed use of the funds available. The Administrative Rules subcommittee works to update the rules governing the program that were last updated in 1970. Finally, the Frovider Approval subcommittee assists the division in implementing a new provider approval system for the program.
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Meetings
The full committee meets quarterly, with subcommittees meeting on an as-needed basis throughout the year. The steering committee meets four times per year prior to the full committee meetings to set the agenda, deal with unresolved business from previous meetings, and discuss emerging issues. Issues Compr Pediatr Nurs Downloaded from informahealthcare.com by University of British Columbia on 10/29/14 For personal use only.
n e Advisory C o r n d e e Expetience The CSHCS Advisory Committee completed its first full year of existence in December, 1991. During this infancy stage, the committee created an impressive list of projects and products that was a credit to the energy of its members. The Advisory Committee assisted the program in developing (a) new rules to govern eligibility and service for delivery for the program, (b) a series of recommendations on how the program can improve its public education efforts, (c) recommendations to maximize contributions to the program’s trust fund as well as recommendations for appropriate use of those funds, and (d) advice and counsel to the program on implementation of its new provider approval system. Furthermore, it orchestrated a successful challenge to a 20% reduction in the administration budget proposal that would have significantly altered the program. It has also provided advice and counsel on several potential and actual cost containment measures. Finally, it has provided advice on issues that cross state agencies boundaries and has been highlighted by the director of the department as an exemplary way to involve consumers in the decision-making process.
Usefulness of the Advisory Committee Structure The Michigan Department of Public Health has gained by avoiding devastating budget cuts. Also, the department has been able to solidify medical care and treatment funding and to increase family support funding in areas like transportation and housing resources because of the alliance between the department and consumers and providers. The department, by sharing its problems with the committee, has been able to find innovative and efficient answers to cost containment when needed. Examples include the parents’ recommendations of purchasing and policy changes that helped scarce dollars go further. Provider cooperation has helped produce volume discounts in lodging arrangements for parent members’ accommodations. Joint political advocacy by the committee membership helped to ensure the successful negotiation of options to address devastating, across-the-board budget cuts.
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Parents and provider members feel an “ownership” of the program, making them more inclined to defend it and explain it to others. The Department of Public Health is proud of its partnership and feels freer to listen to concerns about the program. Joint problem solving has replaced defensive postures and “we-they ” responses. The activities of the committee not only have heightened political awareness but also have helped other parents and organizations understand how and when to use the program. Awareness of the program is spreading, with the use of the services becoming more effective and efficient. Through the committee and its processes, criticisms of the program are identified early and responded to quickly, before they become political liabilities. As a result, legislative understanding and support of the program are increasing. For example, by involving consumers in the program, deficiencies in services are identified and corrected. A philosophy of broad participation creates a structure in which better policy decisions are made because all interests are represented in an open forum. The committee decisions can be difficult and take longer than an executive decision made by the administration of the department. However, the result of a consensus approach is to have the input of all involved, thereby creating the support of a unified body. The success of the advisory committee is based on several critical factors. First, it had the support of top-level administration and decision makers, who were committed to making the advisory group structure a functioning forum. Second, the committee membership comprised individuals from many different perspectives with strong leadership skills.
Perspectives on the Advisory Committee’s Utility Although the above list of accomplishments addresses the benefits associated with use of an advisory committee, additional perspectives are examined concerning what purpose an advisory committee serves. Three different perspectives on its utility are presented because the committee serves multiple groups in varying ways. These are the perspectives the families served, advocates that have coalitions with the agency, and state policymakers. Family Perspective
The creation of an advisory committee has been beneficial for families, the recipients of the services and policies generated by CSHCS. The CSHCS program has a statewide family support network from which family committee representation was solicited. The family participants were selected by other families, not by professionals. Family participa-
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tion was encouraged through the use of expense reimbursement, including child care. The message that families were valued and respected as partners was clearly articulated from the committee’s inception. For families, the most obvious benefit of membership on such an advisory committee is the access to information and direct communication with policymakers at the state level. Just as other members bring varieties of expertise to the forum, families bring expertise in receiving services. The families provide information on the inefficiency of services or the contradiction of policy intent and implementation. Such information is valuable to the improvement of the efficiency and effectiveness of the program. The family support network provides a structure in which committee members can get effective input to share in the advisory committee forum. This input helps ensure that the services provided are responsive to families’ needs and concerns and helps shape future services. Moreover, family participation on the Advisory Committee provides a “front-end” evaluation mechanism for new programs well before implementation. For example, recent budgetary constraints threatened cuts in services to CSHCS. Through the family representatives on the committee, the program’s families were made aware of administrative proposals and opportunities for comment through legislative hearings and other contacts with elected officials. The volume and intensity of the families’ responses to the legislature resulted in a special meeting between families, the House Appropriations Committee chair, and a pro-life legislator. At this meeting, families conftonted the legislators on the lack of wisdom in curtailing this program at the very time that Michigan was restricting a woman’s option to terminate a problem pregnancy. This meeting was the turning point in the budget discussions. Family input diverted the budget cuts away from critical services needed. Dollars were shifted toward the services consumers felt were most critical, such as medical treatment and travel assistance. Additionally, families identified possible cost containment solutions for purchase of diapers, medical supplies, and other items to help address budgetary constraints. Other benefits to families exist that may not be so obvious. The committee has provided members with an atmosphere for developing relationships with many key state leaders. These linkages made through efforts on the committee are very different from the relationships one makes with the same leaders while testifying on an issue. In some cases, relationships are made and nurtured that would not have occurred had the opportunity not been presented. Families are now seen as colleagues, thereby heightening the sense of partnership and promoting collaboration. Altogether, the access to information and policies provides families
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with a broader system perspective. Families better understand the motivations and thinking behind policies as well as the system constraints. When necessary, this helps families develop more effective strategies on how to enact system change and how to be more effective advocates. This has also contributed toward the skill and leadership development of those participating family members, which can be shared through the network with all program families. In conclusion, the advisory committee structure of this program has been viewed by families as extremely valuable. Because this committee forum models the concept of partnership in policy, it offers providers who participate on the committee an opportunity to work with consumers rather than to provide policies for them. It is important to note that without the critical foundation described, this structure may have been perceived by families as nothing more than “tokenism.” Instead, families are full-functioning members of an effective committee that produces policies that fuel family-centered services for children with special health concerns. An Advocate s Perspective
The following section addresses why, from the standpoint of an advocacy organization, serving on the Advisory Committee of the CSHCS is important. Additionally, it explains why management of the program shares power with special interest groups. Lastly, it describes the benefits for those advocates who participate. One representative who serves on the Advisory Committee is from the Michigan Council for Maternal and Child Health, a private nonprofit health coalition. The Michigan Council for Maternal and Child Health holds to the belief that an institution like the Division of Children’s Special Health Care Services increases its vitality and viability if it is part of and responsive to a community of stakeholders. Ultimately, this produces a better service, one that is flexible and has broader political and policy support because it acts on consensus agreements forged from discussions among serious stakeholders in its mission. As a lobbying and consumer advocate and health coalition, the council is more knowledgeable and better able to explain, defend, and support the program in the legislature because of the involvement in the decision making that occurs in the Advisory Committee. Such involvement generally assists in the acceptance of the decisions that all committee members have helped craft. State Policy Perspective
Creation of the CSHCS Advisory Committee was one of several initiatives undertaken by the Michigan Department of Public Health to de-
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velop improved parent-professional advocate agency collaboration within the program. Other activities included building a statewide network of family support (peer support) and developing a staff role for parents in the state agency. Therefore, it is difficult to isolate the effect of only the Advisory Committee, and the ideas presented below may, at times, also reflect the broader Parent Participation Project. The primary purpose for establishing the committee was to create a formal, public way of processing issues and information with the goal of making our program more user-friendly to all stakeholders. At the time the committee was created, the program was operating with 20-year-old rules, a growing medical care and treatment budget, an antiquated management information system, and insufficient administrative and case management resources. Furthermore, as a specialty care program, CSHCS was increasingly affected by overall changes in the broader health-care system, such as managed care. The first-year accomplishments of the Advisory Committee speak to the ability of the committee to process and use information provided by the program. Still,with the exception of the budget advocacy, the Michigan Department of Public Health could have developed, through staff work, all the processes cited. However, the energy and funds were expanded to bring 25 people together to help us. This was done because as health professionals, agency staff are in the business of providing services for others. It is important to these staff, from a perspective of accountability for public funds as well as professional satisfaction, to be able to construct a program that is focused on child and family needs as much as possible. Such collaboration in decision making builds a knowledgeable constituency network that results in broader support and advocacy for the program. Certainly there are other ways to solicit outside input to policy making. A survey is one example; an ad hoc task force is another. The advantage of an advisory committee is that it is ongoing, can address a wide range of issues, and formally brings diverse interests to the table to process issues and form a consensus. It is the ongoing nature of the group that allows a relationship with the agency program to grow and develop over time. Perhaps the greatest benefit is the intangible perception that all members are in this together. Costs exist that must be paid to fuel this collaboration. The obvious costs are the commitment of staff resources and dollars. For an advisory committee to be a useful tool for state policy making, both the members and the state must commit to the relationship. From the state perspective, this includes the basics such as staff support for scheduling, minutes, research, drafting reports, and mailing. To include families, it requires financial support for travel and child-care arrangements. Be-
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yond this, it also requires an executive commitment to invest in the development of committee members as knowledgeable advocates to and for the program. The more committee members understand about the legal, budgetary, and programmatic context for existing and proposed policies, the better advice they can give. This requires a willingness to share information, several times if necessary, and to answer in depth any and all questions of all constituents. A program must recognize the risks associated with an advisory comrnitlee as well as its concrete costs and benefits. At the heart of any reluctance to invite others into the policy-making arena is a fear of loss of power and control; perhaps it is better stated as a loss of solitary power and control. In reality, the opposite is more true. Collaborative policy making results in a broader base of support for the issue at hand and allows for smoother and more powerful resource acquisition and implementation.
CONCLUSIONS The building of parent-professional partnerships can be risky business for both parties, but in these times of power through democracy and consensus, it is the right thing to do. Partnerships, such as an advisory committee, involve hard work and some costs, but the benefits engendered are worth the work and costs. In the long run, such committees pave the way for new and exciting opportunities to serve children and their families. As such, the advisory committee can be seen as the future of an agency, a future with the promise of consensus and reality based services.
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ADVISORY COMMITTEES FOR AGENCIES THAT PROVIDE SERVICES FOR CHILDREN WITH SPECIAL HEALTH-CARE NEEDS
Issues Compr Pediatr Nurs Downloaded from informahealthcare.com by University of British Columbia on 10/29/14 For personal use only.
BRYN FORTUNE JANET OLSZEWSKl Michigan Department of Public Health PAUL SHAHEEN Michigan Council for Maternal and Child Health
The Children’s Special Health Care Services Advisory Committee is an advisory group that includes stakeholders in the delivery of care for children with special health-care needs. An emphasis has purposely been placed on consumer participation to ensure adequate voice and balance with other provider, legislative, and bureaucratic interests. The Advisory Committee has assumed an aggressive and complete role in reviewing and recommending every aspect of the program. As a result of this active co-ownership, the program has repeatedly survived threats of serious budget cuts and reductions to its base. Agreement between providers and consumers on values. structure, and operational needs has been reached. A win-win approach has been possible, not only in the planning and growth of the program but also in the policy arena, legislatively, and with the administration.
INTRODUCTION Increasing demands are being placed on social service agencies and governmental bodies to provide family-centered, community-based services that are actually competent. Agencies may struggle to respond to this demand, especially if consumers do not have a voice in the establishment of services. The purpose here is to describe the development of the medium of the Advisory Committee as one way of being responsive to community and family needs for services that are relevant, userfriendly, and culturally competent. Included here is a description of the establishment of a specific Advisory Committee for the State of Michigan Children’s Special Health Care Services (CSHCS) Program.
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BACKGROUND AND HISTORY The CSHCS Program in Michigan is grounded in state statute, specifically Public Act (PA) 368 of 1978, also known as the Public Health Code. The program is still titled “Crippled Children’s Program” in the statute, and the statutory base goes back to 1927, when the Crippled Children’s Commission was created to administer a program of medical services to children with orthoped~cconditions. At the time of the Public Health Code revision in 1978, the Michigan Department of Public Health had fully assumed that administration of the Crippled Children’s Program and a decision-making body such as the commission were no longer relevant. Nevertheless, outside input to the program’s policy making and operations was viewed as important, and Public Act 368 of 1978 created an advisory committee to succeed the commission. The specific text of the legislation is as follows: 333.5811. Crippled children’s advisory committee; creation; appointment of members; successor to the Michigan crippled children commission; subject to S. 333.2215; election of chairperson and vice-chairperson; meetings; travelling expenses; conferring with and advising department.
Sec. 5811. (1) The crippled children’s advisory committee is created in the department. The committee consists of 5 members appointed by the governor, upon recommendation of the director. (2) The committee is the successor to the Michigan crippled children commission and is subject to Section 2215. (3) The committee annually shall elect a chairperson and a vicechairperson from its members and shall meet on call of the department. (4) The members of the committee shall serve without compensation, but shall be reimbursed for actual and necessary travelling expenses pursuant to Section 1216. (5) The committee shall confer with and advise the department as to its functions under this part. (PA 368 of 1978)
The department maintained the legally required advisory committee for a few years, but eventually the committee became nonfunctional as the program experienced an increased demand for its services and a greater need to develop sound administrative systems. Staff energy was directed elsewhere, and the committee was eliminated under a sunset provision
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(Section 333.2215 of PA 368 of 1978) of the Michigan Public Health Code. In 1990, the Crippled Children’s Program, now known as the Division of Children’s Special Health Care Services (CSHCS), reviewed its position as a program committed to developing family-centered, community-based care. In the decade of the 1980s, the program had grown from one serving 2,800 children to one serving over 17,000 children. It had also become the single largest program in the maternal and child health area of the department, with expenditures over $50 million for medical care and treatment in 1990, which was nearly three times what was spent in 1980. Several other changes had also taken place in the program’s environment. Although the population of Medicaid-eligible children served by the program was growing, medical technology was developing at a fast pace, affecting both the available treatment protocols for children and their cost. The mental health system was developing programs to serve developmentally disabled children at home, the Katie Beckett waiver programs were developed, and Public Law 99-457 Part H was enacted. Furthermore, health-care cost containment and reform had begun to gain momentum. The administrators of the program and the department realized that the simple program of the past no longer existed. Furthermore, it was recognized that to keep pace with the sophisticated, high-tech healthcare arena, much more than efficient internal administration of the program was needed. Administration thus made a decision to reconstitute an advisory committee as a formal way of soliciting input to better respond to the emerging needs of the population with new initiatives for care.
Advisory Committee Structure and Process The Department decided to form a committee to advise the program on matters of consequence, including efficiency, effectiveness, and quality assurance issues. Given the nature of the group, bylaws for the committee were not established. Rather, a program policy to govern its structure and actions was established. Membership
Given the myriad of issues facing the program and the number of organizations that touched the lives of children with special health-care needs, it was easy to determine that a five-member committee would not be sufficient to bring together, in one place, all the interests that should be brought to the meeting table. Therefore, the program chose to expand
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membership of the Advisory Committee from the previously mandated 5 members to 25 members. Membership of the committee includes individuals from families, providers, state departments, local health departments, insurers, the legislature, and advocacy organizations. The membership roster can be found in Table 1. Membership was constructed to have families, providers, and advocacy organizations share relatively equal representation on the committee, with five representatives for each of these groups. This was done to balance the interests and to ensure family participation. The actual number of 25 reflected broad enough representation from the groups without becoming unwieldy. Such broad representation is needed to ensure attendance (e.g., family representatives can have difficulty attending a full schedule of meetings due to the demands of the family). Blue Cross/Blue Shield of Michigan is the sole private insurance representative because the vast majority of the program’s clients who do have insurance coverage have this carrier. The legislative representative of three individuals reflects membership from both the House and Senate Appropriations Committees as well as the legislative policy staff. Local health departments currently perform case finding, assessment, and case management functions for the program; hence, they have one representative to the committee as well. The remaining members are from other state agencies who may provide service for CSHCS families and with whom it is essential that our program coordinate. The one exception in this group is the Department of Management and Budget, whose role is to prepare and defend the governor’s budget each year. It was believed important ’IBble 1. Membership Roster-Division of Children’s Special Health-Care Services Advisory Committee Families Providers Insurer Advocacy organizations Department of Mental Health Department of Social Services (Medicaid) Department of Management and Budget Department of Education Michigan Association of Local Public Health Legislative agencies
Total
5 5 1
5 1 2 1
1 1
3 25
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to give the budget staff every opportunity to keep apprised of the Frogram’s issues.
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Oficers
Originally, the structure called for a chairperson and vice-chairperson appointed by the Director of the Department of Public Health. Since establishing the committee, the structure to use co-chairpersons was incorporated instead. The parent of a special needs child serves as one of the co-chairs and the executive director of a maternal and child health advocacy organization serves as the other chair. One reason the change was made was to actively convey that families have an equal power share with other organizations and interest groups. A second reason was that as a practical matter, two co-chairs allow strong leadership of the committee regardless of one person’s constraints on availability. Subcommittees
Although the Advisory Committee has only one standing committee, a steering committee, it has worked effectively throughout the last 2 years through four ad hoc subcommittees. These subcommittees were formed to focus on major issues the Division faced in 1990-1991 and, due to their ad hoc nature, can be reviewed and refocused as needed. Currently, the subcommittees are Public Education, Trust Fund, Administrative Rules, and Provider Approval. A steering committee, composed of the co-chairs and the subcommittee chairs, advises the department when it is not possible to consult the full committee and sets the course and direction for the full committee. The Public Education subcommittee focuses its work on developing a set of recommendations on how the program can improve its visibility among potential client families, since even after 65 years of existence, many professionals and families are unaware of it. The Trust Fund subcommittee develops recommendations regarding the use of the DCSHS program trust fund, established roughly 40 years ago initially through a bequest of securities, as well as fund growth and management. Although the program uses interest income from the trust for special projects, CSHCS neither actively solicits donations to the trust nor actively manages its growth. Additionally, use of the funds has historically been at the division chief‘s discretion. This committee now advises the division on proposed use of the funds available. The Administrative Rules subcommittee works to update the rules governing the program that were last updated in 1970. Finally, the Frovider Approval subcommittee assists the division in implementing a new provider approval system for the program.
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Meetings
The full committee meets quarterly, with subcommittees meeting on an as-needed basis throughout the year. The steering committee meets four times per year prior to the full committee meetings to set the agenda, deal with unresolved business from previous meetings, and discuss emerging issues. Issues Compr Pediatr Nurs Downloaded from informahealthcare.com by University of British Columbia on 10/29/14 For personal use only.
n e Advisory C o r n d e e Expetience The CSHCS Advisory Committee completed its first full year of existence in December, 1991. During this infancy stage, the committee created an impressive list of projects and products that was a credit to the energy of its members. The Advisory Committee assisted the program in developing (a) new rules to govern eligibility and service for delivery for the program, (b) a series of recommendations on how the program can improve its public education efforts, (c) recommendations to maximize contributions to the program’s trust fund as well as recommendations for appropriate use of those funds, and (d) advice and counsel to the program on implementation of its new provider approval system. Furthermore, it orchestrated a successful challenge to a 20% reduction in the administration budget proposal that would have significantly altered the program. It has also provided advice and counsel on several potential and actual cost containment measures. Finally, it has provided advice on issues that cross state agencies boundaries and has been highlighted by the director of the department as an exemplary way to involve consumers in the decision-making process.
Usefulness of the Advisory Committee Structure The Michigan Department of Public Health has gained by avoiding devastating budget cuts. Also, the department has been able to solidify medical care and treatment funding and to increase family support funding in areas like transportation and housing resources because of the alliance between the department and consumers and providers. The department, by sharing its problems with the committee, has been able to find innovative and efficient answers to cost containment when needed. Examples include the parents’ recommendations of purchasing and policy changes that helped scarce dollars go further. Provider cooperation has helped produce volume discounts in lodging arrangements for parent members’ accommodations. Joint political advocacy by the committee membership helped to ensure the successful negotiation of options to address devastating, across-the-board budget cuts.
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Parents and provider members feel an “ownership” of the program, making them more inclined to defend it and explain it to others. The Department of Public Health is proud of its partnership and feels freer to listen to concerns about the program. Joint problem solving has replaced defensive postures and “we-they ” responses. The activities of the committee not only have heightened political awareness but also have helped other parents and organizations understand how and when to use the program. Awareness of the program is spreading, with the use of the services becoming more effective and efficient. Through the committee and its processes, criticisms of the program are identified early and responded to quickly, before they become political liabilities. As a result, legislative understanding and support of the program are increasing. For example, by involving consumers in the program, deficiencies in services are identified and corrected. A philosophy of broad participation creates a structure in which better policy decisions are made because all interests are represented in an open forum. The committee decisions can be difficult and take longer than an executive decision made by the administration of the department. However, the result of a consensus approach is to have the input of all involved, thereby creating the support of a unified body. The success of the advisory committee is based on several critical factors. First, it had the support of top-level administration and decision makers, who were committed to making the advisory group structure a functioning forum. Second, the committee membership comprised individuals from many different perspectives with strong leadership skills.
Perspectives on the Advisory Committee’s Utility Although the above list of accomplishments addresses the benefits associated with use of an advisory committee, additional perspectives are examined concerning what purpose an advisory committee serves. Three different perspectives on its utility are presented because the committee serves multiple groups in varying ways. These are the perspectives the families served, advocates that have coalitions with the agency, and state policymakers. Family Perspective
The creation of an advisory committee has been beneficial for families, the recipients of the services and policies generated by CSHCS. The CSHCS program has a statewide family support network from which family committee representation was solicited. The family participants were selected by other families, not by professionals. Family participa-
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tion was encouraged through the use of expense reimbursement, including child care. The message that families were valued and respected as partners was clearly articulated from the committee’s inception. For families, the most obvious benefit of membership on such an advisory committee is the access to information and direct communication with policymakers at the state level. Just as other members bring varieties of expertise to the forum, families bring expertise in receiving services. The families provide information on the inefficiency of services or the contradiction of policy intent and implementation. Such information is valuable to the improvement of the efficiency and effectiveness of the program. The family support network provides a structure in which committee members can get effective input to share in the advisory committee forum. This input helps ensure that the services provided are responsive to families’ needs and concerns and helps shape future services. Moreover, family participation on the Advisory Committee provides a “front-end” evaluation mechanism for new programs well before implementation. For example, recent budgetary constraints threatened cuts in services to CSHCS. Through the family representatives on the committee, the program’s families were made aware of administrative proposals and opportunities for comment through legislative hearings and other contacts with elected officials. The volume and intensity of the families’ responses to the legislature resulted in a special meeting between families, the House Appropriations Committee chair, and a pro-life legislator. At this meeting, families conftonted the legislators on the lack of wisdom in curtailing this program at the very time that Michigan was restricting a woman’s option to terminate a problem pregnancy. This meeting was the turning point in the budget discussions. Family input diverted the budget cuts away from critical services needed. Dollars were shifted toward the services consumers felt were most critical, such as medical treatment and travel assistance. Additionally, families identified possible cost containment solutions for purchase of diapers, medical supplies, and other items to help address budgetary constraints. Other benefits to families exist that may not be so obvious. The committee has provided members with an atmosphere for developing relationships with many key state leaders. These linkages made through efforts on the committee are very different from the relationships one makes with the same leaders while testifying on an issue. In some cases, relationships are made and nurtured that would not have occurred had the opportunity not been presented. Families are now seen as colleagues, thereby heightening the sense of partnership and promoting collaboration. Altogether, the access to information and policies provides families
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with a broader system perspective. Families better understand the motivations and thinking behind policies as well as the system constraints. When necessary, this helps families develop more effective strategies on how to enact system change and how to be more effective advocates. This has also contributed toward the skill and leadership development of those participating family members, which can be shared through the network with all program families. In conclusion, the advisory committee structure of this program has been viewed by families as extremely valuable. Because this committee forum models the concept of partnership in policy, it offers providers who participate on the committee an opportunity to work with consumers rather than to provide policies for them. It is important to note that without the critical foundation described, this structure may have been perceived by families as nothing more than “tokenism.” Instead, families are full-functioning members of an effective committee that produces policies that fuel family-centered services for children with special health concerns. An Advocate s Perspective
The following section addresses why, from the standpoint of an advocacy organization, serving on the Advisory Committee of the CSHCS is important. Additionally, it explains why management of the program shares power with special interest groups. Lastly, it describes the benefits for those advocates who participate. One representative who serves on the Advisory Committee is from the Michigan Council for Maternal and Child Health, a private nonprofit health coalition. The Michigan Council for Maternal and Child Health holds to the belief that an institution like the Division of Children’s Special Health Care Services increases its vitality and viability if it is part of and responsive to a community of stakeholders. Ultimately, this produces a better service, one that is flexible and has broader political and policy support because it acts on consensus agreements forged from discussions among serious stakeholders in its mission. As a lobbying and consumer advocate and health coalition, the council is more knowledgeable and better able to explain, defend, and support the program in the legislature because of the involvement in the decision making that occurs in the Advisory Committee. Such involvement generally assists in the acceptance of the decisions that all committee members have helped craft. State Policy Perspective
Creation of the CSHCS Advisory Committee was one of several initiatives undertaken by the Michigan Department of Public Health to de-
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velop improved parent-professional advocate agency collaboration within the program. Other activities included building a statewide network of family support (peer support) and developing a staff role for parents in the state agency. Therefore, it is difficult to isolate the effect of only the Advisory Committee, and the ideas presented below may, at times, also reflect the broader Parent Participation Project. The primary purpose for establishing the committee was to create a formal, public way of processing issues and information with the goal of making our program more user-friendly to all stakeholders. At the time the committee was created, the program was operating with 20-year-old rules, a growing medical care and treatment budget, an antiquated management information system, and insufficient administrative and case management resources. Furthermore, as a specialty care program, CSHCS was increasingly affected by overall changes in the broader health-care system, such as managed care. The first-year accomplishments of the Advisory Committee speak to the ability of the committee to process and use information provided by the program. Still,with the exception of the budget advocacy, the Michigan Department of Public Health could have developed, through staff work, all the processes cited. However, the energy and funds were expanded to bring 25 people together to help us. This was done because as health professionals, agency staff are in the business of providing services for others. It is important to these staff, from a perspective of accountability for public funds as well as professional satisfaction, to be able to construct a program that is focused on child and family needs as much as possible. Such collaboration in decision making builds a knowledgeable constituency network that results in broader support and advocacy for the program. Certainly there are other ways to solicit outside input to policy making. A survey is one example; an ad hoc task force is another. The advantage of an advisory committee is that it is ongoing, can address a wide range of issues, and formally brings diverse interests to the table to process issues and form a consensus. It is the ongoing nature of the group that allows a relationship with the agency program to grow and develop over time. Perhaps the greatest benefit is the intangible perception that all members are in this together. Costs exist that must be paid to fuel this collaboration. The obvious costs are the commitment of staff resources and dollars. For an advisory committee to be a useful tool for state policy making, both the members and the state must commit to the relationship. From the state perspective, this includes the basics such as staff support for scheduling, minutes, research, drafting reports, and mailing. To include families, it requires financial support for travel and child-care arrangements. Be-
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yond this, it also requires an executive commitment to invest in the development of committee members as knowledgeable advocates to and for the program. The more committee members understand about the legal, budgetary, and programmatic context for existing and proposed policies, the better advice they can give. This requires a willingness to share information, several times if necessary, and to answer in depth any and all questions of all constituents. A program must recognize the risks associated with an advisory comrnitlee as well as its concrete costs and benefits. At the heart of any reluctance to invite others into the policy-making arena is a fear of loss of power and control; perhaps it is better stated as a loss of solitary power and control. In reality, the opposite is more true. Collaborative policy making results in a broader base of support for the issue at hand and allows for smoother and more powerful resource acquisition and implementation.
CONCLUSIONS The building of parent-professional partnerships can be risky business for both parties, but in these times of power through democracy and consensus, it is the right thing to do. Partnerships, such as an advisory committee, involve hard work and some costs, but the benefits engendered are worth the work and costs. In the long run, such committees pave the way for new and exciting opportunities to serve children and their families. As such, the advisory committee can be seen as the future of an agency, a future with the promise of consensus and reality based services.
