Executive Summary of Project Activities to Date

June, 1998

Prepared by

• Toni G. Wall, Project Director, Department of Human Services
• Deborah A. Gilmer, Project Co-Director, University of Maine
• Elizabeth DePoy, Project Co-Director, University of Maine
• Janet May, Project Coordinator, University of Maine

The Maine Adolescent Transition Partnership is a Cooperative Initiative Between the Maine Department of Human Services, Bureau of Health, Coordinated Care for Children with Special Health Care Needs and the Center for Community Inclusion and Disability Studies, UAP, University of Maine. The project receives funding from the U.S. Department of Health and Human Services, Maternal and Child Health Bureau.

I. Introduction

II. Steering Committee

III. Participatory Action Team

IV. Summary of the Maine Adolescent Transition Needs Assessment Phase

Focus Groups

Survey Administration

V. Phase One: Maine Adolescent Transition Partnership: Development/Planning Groups

VI. Pilot

VII. Next Steps

I. Introduction

To obtain a comprehensive understanding of the transition needs of adolescents with chronic illness and disability as a basis for future systems change and service revision in Maine and consistent with the requirements of the Maternal and Child Health Bureau's Healthy and Ready To Work needs assessment initiative, a statewide, multi-level, participatory action study, the Maine Adolescent Transition Needs Assessment Project (MAT), was conducted in Maine during 1996-97. In this study, the definition of adolescents with chronic illness and disability was articulated as:

a broad group of youth with mild, moderate and/or severe chronic illness or disabling conditions, homelessness and mild mental illness between the ages of 14-25.

These boundaries were selected because this definition was used in the enabling legislation in Maine which supported the development of formal regional transition coordination efforts to address the issues of youth with disabilities in transition from school to adulthood.

The study used an innovative, multi-method participatory action approach to ascertain the perspectives of multiple interest groups regarding the meaning of successful transition and how to promote it in adolescents with chronic illness and disability. The findings revealed that interest groups (adolescents, parents, health providers, social service providers, educators, and employers) held some common but many diverse perspectives. Knowledge generated from the study was used as a basis for examining the fit of the current service systems with the needs articulated by the diverse groups of respondents and informants who participated in the study, and to inform planning efforts that are currently taking place during the initial year of the four year implementation phase of Maine's Healthy & Ready to Work initiative, the Maine Adolescent Transition Partnership (MATP).

II. Steering Committee

The Project Steering Committee, comprised of adolescents with special health care needs, family members, state and private agency providers including health care providers and the State's Title V Director, educators and policy makers, is responsible for overseeing all project activities and assures that the voices of all interest groups, cultural groups, organizations and agencies involved in transition are represented and integrated into the implementation of the MATP. The Bureau of Health, Division of Community and Family Health continues to provide staff support to the Steering Committee which meets quarterly in Augusta.

Since the MATP was established in 1997 following the completion of the Needs Assessment Phase, the Steering Committee has met twice and a third meeting is scheduled for June 17, 1998. The Steering Committee has reviewed and made recommendations regarding adolescent health indicator surveys to be used in the evaluation of the project; has established criteria for the selection of the region in which the plan resulting from the Force Field analysis will be piloted; participated in a sample force field analysis group; reviewed the findings from the initial round of force field groups; made preliminary recommendations regarding program development based upon the preliminary findings; and, provided support to project activities.

III. Participatory Action Team

Building on the successful innovative and inclusive inquiry strategies of the MAT, the MATP has continued its participatory action approach during the implementation phase. The use of this participatory approach to assessment and planning has resulted in the accumulation of information from multiple perspectives and interest groups, but also gave voice to populations such as the adolescents themselves who have not contributed directly to an understanding of their needs. Moreover, the use of "subjects as researchers" in all phases of the project placed the knowledge in the hands of those who the findings would affect. The Participatory Action Team (PAT) from the MAT was reconvened in the fall and additional training provided in the conduct of force field analysis as a planning tool. This training included the conduct of mock planning sessions. PAT members conducted force field planning groups with a University researcher throughout Winter, 1998.

As was the case in the needs assessment, the PAT is currently comprised of adolescents with special health care needs, parents, an educator, an employer, health care and social service providers with guidance provided by the University researchers. Each PAT member conducted a (several) planning group(s) with his/her constituency group.

Pairing a university researcher with a lay researcher has provided valuable links among the research and planning processes and those who were the "subjects" of the research and planning. Moreover, this structure was designed to facilitate responses and knowledge that may not have been forthcoming without those linkages. The use of participatory action research has been valuable not only in yielding opinions and knowledge from diverse perspectives but, we believe, has also provided a model for future needs assessment research and planning.

IV. Summary of the Maine Adolescent Transition Needs Assessment Phase

A research design integrating qualitative and quantitative strategies was developed to answer the following six research questions:

1. What do adolescents with chronic illness and disability, their families, providers and policy makers articulate as positive transition outcomes?
2. How do adolescents with chronic illness and disability, their families, providers, potential employers, and policy makers define independence for this population?
3. What barriers to successful transition are articulated by adolescents with chronic illness and disability, their families, providers, potential employers, and policy makers?
4. What current and missing supports and services are needed by adolescents with chronic illness and disability are articulated by adolescents with chronic illness and disability, their families, providers, potential employers, and policy makers?
5. What geographic, ethnic and socio-economic differences exist in articulated positive transition outcomes, definitions of independence, perceived barriers, and current and needed services?
6. What differences in desired transition outcomes, definition of independence and perceived service needs exist among adolescents with chronic illness and disability, their families, providers, potential employers and policy makers?

To conduct this study, a participatory action research model was implemented and involved the three essential elements of action research: 1. The research conforms to empirical rigor; 2. Those who have traditionally been subjects are integral to the conduct of the research; and 3. The study yields results that are useful and relevant to the lives of the participants (Stringer, 1996). In this study, three methods were triangulated to conduct the needs assessment: focus groups; life histories; and survey administration (see Table 1). Because our findings have been shared in other written documents prepared by project staff (including three articles that have been submitted for publication) and as papers presented by project staff in at least three national conferences and meetings, only a brief overview of the findings are presented here.

Focus Groups

An analysis of the data from nine focus groups (representing the six interest groups identified above) revealed fourteen themes, none of which were articulated by all groups. The two most common themes, which emerged in four of the six interest groups were: 1. The need for coordinated and responsive services; and 2. The need for equal post-high school opportunity for adolescents with chronic illness and disability.

Need for Coordinated and responsive services

This theme actually describes several related constructs. Essentially, this theme included the need for a clear and navigable system in which consumers would be aware of a range of services, have easy access to them, and perceive the services as useful to promoting the successful transition of the adolescents. Moreover, there was consensus hat this system should be seamless and continue beyond high school graduation. Exactly what services were to be included were not agreed upon by the groups but were revealed to some extent in the other themes.

Table 1
MAT Needs Assessment

Post School Opportunity

The desire and need for equal opportunity in higher education, job opportunity, social opportunity, independence and ultimately home ownership emerged in four of the six interest groups.

Other Themes

Three other themes were addressed by three of the six interest groups. First, uneven and ambiguous services referred to the diversity of services and providers available as well as the degree to which those services and providers are seen as useful and knowledgeable respectively in advancing successful transition. Second, and closely related to this theme of ambiguity, was the theme of the limitations of rurality. While many of the participants liked elements of rural living, they specified the major limitations of availability and access to needed services and supports endemic to rural areas with minimal resources. Third, three of the interest groups spoke about the desire for adolescents with disability and chronic illness not only to have equal post-high school opportunity, but to expand this equality to all areas of life. The specific focus of this theme moved beyond opportunity to the concept of "normalcy." That is, participants, especially the adolescents themselves, wanted "to be like other adolescents."

Survey Administration

In order to provide quantitative empirical, comparative data about service needs as perceived by parents and providers, the Provider and Family Assessment of Coordination of Care Surveys (System Assessment of Wisconsin's MCH Program, 1993) were mailed to randomly selected samples of providers and parents, respectively, with a cover letter explaining the study and consent procedures and a request to return the completed instrument within two weeks. A total of 43 providers and 24 parents returned the survey for a return rate of 10% and 12%, respectively. The rank order item, which was the same on both surveys, asked respondents to rank order a list of services according to their perceived importance. These data were used to ascertain service priorities for each group and to examine the differences in priorities between the two groups. Both providers and parents viewed the development of a care plan, obtaining financial supports to enact the plan and identifying services to fill that plan as the top three priorities for service coordination. Parents identified the need for advocacy and information as the fourth priority, while service providers identified it as the least important. Evaluation of service efficacy and outcome was ranked lower by parents than by providers. It is possible that the lack of consensus on these three areas reflects the unique needs of each interest group. The need on the part of parents to obtain more information and to disseminate information and training about adolescents with chronic illness and disability was clearly articulated in the parent focus group. Although evaluation of services did not emerge as a concern in any focus group, the provider priority on evaluation over the parents priority on information and advocacy is understandable in the increasing competitive climate of managed care and accountability.

V. Phase One: Maine Adolescent Transition Partnership: Development/Planning Groups

Consistent with the project's stated goals this section reports on the activities conducted under Goal One: conduct a statewide system development effort using the force field analysis planning tool piloted in the planning year, to develop an articulated set of adolescent-centered procedures through which adolescents are identified, plan for their transition, and obtain support and services necessary for successful transition, and identify and fill service gaps. To date nine development groups have been conducted around the state and a brief summary of the plans developed in those groups is presented here. Each group was given a specific goal that emerged from the needs assessment to address through force field analysis.

Health Care Provider Group (Conducted at Eastern Maine Medical Center in Bangor)

Goal: Increase the ability of adolescents who have special health care needs to manage their health care.

The health care providers participating in this group (physicians, nurses, social worker, physical therapist, and occupational therapist) developed a plan to provide information/support to parents so that they can assist their children to acquire/enhance their abilities to manage their own health care that will utilize existing resources to the extent possible (Parents Encouraging Parents, Ronald McDonald House gatherings, conferences) and to share information among parents about existing and needed resources.

Parents were recognized as a key link in assisting youth to become responsible for their own health care.

Adolescent Group (took place at Fort Kent Community School on the Canadian border in Northern Maine, included adolescents from a number of communities in Aroostook County)

Goal: Increase the ability of adolescents to manage their health care.

The students identified a number of strengths that could be used to achieve this goal, including the support of some teachers and these teachers' roles in helping to support and accommodate students with special health care needs through:

1. making student needs known to others;
2. student participation in extracurricular activities;
3. increased focus on transition planning;
4. encouraging driving lessons for this population;
5. acknowledging and supporting the reality that students must move away for work and post high school opportunities.

Factors that are limiting to the attainment of the goal include:

1. peer pressure;
2. a lack of knowledge by others (peers and teachers) of special health care needs;
3. students' lack of knowledge about how to talk about what they need;
4. limited choice of teachers in small schools;
5. increased car insurance rates because it is often difficult to maintain high grades;
6. students' difficulty in asking for accommodations and support in school.

The adolescents identified special education (resource room) as both supportive (you get the help you need and are not rushed) and limiting (it's embarrassing, including the need to be labeled to get the support). The group decided to develop a plan to address: 1) ways to make youth more comfortable to talk about their special needs and what it is they require for support; and 2) ways to get teachers and health care providers to concentrate on students' strengths and to provide the necessary accommodations.

Adolescent Group (took place at Shaw House, a shelter for Bangor area teens who are homeless)

Goal: Increase the number of adolescents and young adults who live independently.

1. Supports identified by the teens included:
2. access to jobs that provide money for food and apartment;
3. the reality that a diploma is required to get a job often keeps the teens focused on trying to stay in school;
4. it is difficult or impossible to be homeless and regularly attend school (despite state and federal laws);
5. some schools that are willing to help homeless teens (i.e. with transportation and other needs);
6. alternative education programs; and
7. educational efforts that provide the community with information about the complexity of issues facing homeless youth.

These youth valued education but could not "fit" into public education environments and regulations. The youth recognize the link between education-better jobs-better lives, but feel frustrated because they perceive that their opportunities to attend school are limited in many school districts. Limiting factors for goal attainment included:

1. being in school limits hours available to work;
2. substance abuse issues;
3. schools that don't provide support or accommodation;
4. parents who won't sign medical releases allowing access to medical services and treatment;
5. stigma of being homeless;
6. realities of living day to day make it difficult to work on future goals.

The plan developed by this group focused on making education accessible and looking at models that produce desired results, including adult education and alternative education programs that have strong work and vocational education components.

Transition Coordinators (conducted at the University of Maine with coordinators who represented regional transition boards servicing the entire state)

Goal: Increase the number of adolescents with special health care needs who are identified and provided with the services and supports they articulate as needing through developing a set of points of access.

The coordinators identified several points of access that exist (strengths supporting goal attainment) including CDS and HeadStart, early childhood screenings, special education and probation and parole. They also identified increased information via the Internet, DHS' integrated case management model and child centered initiatives in Maine such as Healthy Start and Communities for Children. They identified limitations to goal attainment such as denial/embarrassment of the disability or health condition on the part of the adolescent, duplication of services, little or no family support, lack of health insurance and managed care issues, and a lack of process for identification that loses many kids. The plan they developed focuses on creating mechanisms for youth to better understand the nature of their disability and to be able to explain what it is they need to others.

Parents (took place at Eastern Maine Medical Center in Bangor, included parents from northern, eastern and central Maine).

Goal: Increase the participation of adolescents with special health care needs in the social and recreational activities of their choice.

The parents identified strengths supporting goal attainment such as membership in clubs and groups, interaction/involvement with peers, and attention to individualized needs. Limitations to goal attainment included a lack of information and communication avenues, the stigma of chronic illness/disability (discrimination), a lack of transportation, and the underestimation of the abilities of these youth on the part parents, educators, and providers. This group developed a plan to increase networking and flow of information so that the youth know about and participate in activities. The plan also included a need for peers and mentors to support participation and connections.

Educators (took place at the University of Maine in Orono and included high school teachers and related service personnel from throughout the state enrolled in a weekend graduate program in special education).

Goal: Increase the number of adolescents with special health care needs enrolled in high school vocational education programs.

The educators felt that increasing the use of portfolios and other alternative assessment strategies would benefit all youth. There are a number of successful models in Maine schools which need to be identified and replicated. Limitations included compartmentalization of youth such that vocational educators did not see their role in educating these youth. The plan developed by this group suggested increasing use of portfolios and other alternative assessment strategies to assure that students could demonstrate their unique strengths and needs and seek supports consistent with these.

Social Service Provider Group (took place in Bangor and included social workers and staff representing residential service providers, a home health care agency, and several community mental health agencies from eastern and central Maine).

Goal: Increase the number of adolescents and young adults with special health care needs who have health insurance.

This group identified several ways for youth to maintain existing health insurance coverage such as pursuing postsecondary education and thus maintaining coverage under their parents' plan; Medicaid buy in programs; increasing the understanding of youth that better education means better opportunities for employment (and, typically, better health insurance options). A strength supporting goal attainment identified the possibility and worth of challenging the insurance company's decisions to limit coverage when it is legally a right. Limiting factors to goal attainment included the difficulty of securing adequate coverage for mental health conditions, the SSI-Medicaid-work dilemmas, inadequate insurance offered by some employed particularly as it relates to preexisting conditions, and the general population's limited understanding of the needs of adolescents with special health care needs and disability. The plan developed by this group centered around the need for all to be better informed consumers concerning health insurance, particularly with the advent of managed care and the constant changes occurring through the use of community forums, discussion and dialogue with the legislature, enhancing information flow, and access to support and assistance to negotiate the complex and often confusing system.

Interdepartmental Committee on Transition's Executive Committee (took place in Augusta).

Goal: Increase the number of adolescents with special health care needs obtaining employment positions that are consistent with their transition goals.

Strengths supporting goal attainment included Maine's Career Advantage Program (a School to Work initiative); Mentoring programs such as Shop-n-Save's; Student Aspirations project; Maine's Learning Results; adolescent participation in transition related staff development efforts; supportive families; self advocacy projects; and supportive guidance counseling. Limiting factors included the need to enhance the knowledge of employers about youth's strengths and benefits of hiring; lack of on site, job coach support; lack of networking among employers; low expectations of youth on the part of parents, educators and providers; categorical nature of postschool funding; Medicaid access, SSI and work disincentives causing families not to pursue employment opportunities; and, the need to share examples of successful transitions broadly with educators, policymakers, youth and families.. The Executive Committee developed plans to 1) include and better collaborate with employers about transition initiatives; 2) support peer/youth networking and self advocacy; 3) research and share information about models and programs that are producing desired outcomes; and 4) support the implementation of the Learning Results to assure that expectations for student outcomes are high.

Employers (took place at the University of Maine)

Goal: Increase the number of adolescents with special health care needs obtaining employment positions that are consistent with their transition goals.

The group developed a plan related to the need to get the word out about employers' needs including:

1. Defining what employers are looking for in potential employees (i.e. good attendance and social skills);
2. Determining who should receive this information (kids and the adults who interact directly with them);
3. Determine how the information should be delivered (employers as teachers in the schools through existing activities that the kids are involved with).

The second plan was designed to reduce the fear and reluctance on the part of employers about hiring people with special health care needs and included:

1. strategies for assuring the successful first placement of an adolescent with special health care needs;
2. creating more work sites where kids with special health care needs can get work experience with a coordinator assisting the efforts;
3. including kids with special health care needs in programs like the Maine Youth Apprentice Program; and
4. providing employers information about relevant disability.
5.  

VI. Pilot

The adolescent-centered policies and procedures resulting form the Force Field analysis development effort will be field tested in one transition region of the state in Year Two of the Implementation Phase of the MATP. There are presently six geographically defined transition regions that comprise the interdepartmental transition planning system in our state. The Steering Committee articulated the following criteria for selection of the pilot region and each of the six regions was invited to submit a letter of interest to participate in the pilot phase. The Steering Committee will be reviewing the letters at its June meeting and making the selection of the pilot region at that time.

Criteria for Transition Region Selection

1. The Regional Board must have formally articulated an interest in becoming the MATP pilot region.
2. To assure that the participatory structure of the project can be implemented and evaluated, the region will articulate its commitment to active involvement of parents & adolescents in planning and implementing transition services and supports.
3. To assure an adequate infrastructure for the pilot and for subsequent evaluation, the region, through its local transition board and/or demonstrated efforts at local high schools and regional vocational centers, will already have established links/connections with school-to-work partnerships and vocational technical high schools.
4. To assure an adequate infrastructure for the pilot and for subsequent evaluation, school reform will have been addressed by one or more of the following in local middle and high schools and vocational education centers served by the Transition Board as demonstrated by:
   • recent systems change efforts targeting the implementation of Learning Results for all students;
   • use of Alternative/Authentic Assessment, including portfolios and demonstration based strategies;
   • commitment to inclusive educational strategies, including student centered planning; and,
   • recent efforts to make School-to-Work pathways and vocational education accessible to all students.
5. To provide adequate diversity for the pilot and subsequent evaluation, the region will have a mix of school administrative units and independent districts (mix of rural/urban/suburban settings).
6. The region will comprise geographic, cultural, and service system diversity for the pilot and subsequent evaluation.
7. The region will articulate a commitment to active participation on the project's Steering Committee which meets quarterly in Augusta.

VII. Next Steps

It is anticipated that the pilot region will be selected in June by the Steering Committee. Once selected, the pilot region will implement the systemic policies and procedures which will be finalized based upon recommendations from the PAT later this summer. To assure the timely and efficient implementation and evaluation of the systemic plan, the project staff will provide training and support through ongoing technical assistance. Based on preliminary analysis of force field development plans, it is anticipated that the system to be piloted will include:

1. a single point of access to services and supports
2. training about special health conditions for all interest groups including the adolescents themselves and using adolescents, parents and providers to conduct subsequent training for other interest and community groups;
3. appointment of regional PATs for ongoing meetings, planning updates, and data collection;
4. development of regional service tapestry by the PAT and identification of what additional services are needed;
5. training transition coordinators or other providers in the ideal family and adolescent centered approaches to transition;
6. employer listing, training and follow-up;
7. link with relevant projects and initiatives underway in Maine including efforts to support students with disabilities in higher education and employment;

Additionally, the adolescent health indicators survey will be widely administered as a pretest to youth in transition in the region. It appears at this point that we will be using the CHIP-AE.

Project staff, in collaboration with the PAT, are currently working on the development of a "service tapestry." A survey instrument is being designed to determine the existing resources and will be piloted in one region of the state before becoming a part of the process of implementation in each region.

Using the following framework, we will interview a broad group of providers (including educators, health care and social service providers) and parents by telephone or in person this summer.

Draft Service Tapestry Survey Framework

For each of the vignettes below, respondents will be asked to answer all of the questions. (We will send the inquiry before the interview, ask the respondent to read and think about the questions and then conduct the interview.)

#1. Jane is a 16 year old woman who was born with juvenile diabetes. She has had an interrupted educational history due to frequent illness and hospitalization. Jane lives with her mother, who works as a nurse in a local nursing home. Jane is a junior and plans to graduate next year from high school. She aspires to move away from home and go to college. Her mother is concerned that Jane will not manage her diabetes and will not be socially prepared for independent life.

#2. Jack is a 17 year old man who was born with Down syndrome. He lives with both of his parents in a private home and attends high school locally. Most of his education occurs in the resource room. Although he has some functional speech, he does not talk much. He is capable of reading at the 4th grade level, and is fully independent in all self care activities. According to his mother, Jack needs to be supported 24 hours a day. Jack will be completing high school in two years, and is now in the process of determining what type of work he would like to do. His parents are also considering selling their home to Jack where he may live with support.

#3. Ann is a 16 year old woman who is currently living at a shelter for homeless teens. She has been homeless for the past two years, having left home because her mother, who has alcoholism, was neglectful and frequently spent time with men who were abusive to Ann. Ann has a substance abuse problem although she is not considered to be addicted to any substances. She has been known to smoke dope daily and to exhibit binge drinking behaviors on an irregular basis. Ann currently works at Dunkin Donuts and is interested in improving her life, finding a permanent home, improving her physical and mental health and ultimately graduating from high school.

To be answered for each vignette:

In answering questions 1-4, please do not refer to the current service systems in your region. Rather answer the questions as if you lived in an ideal world where money to support adolescents with special health care needs was unlimited.

1. What do you see as the service needs of this individual?
2. What agency/organization should be the initial point of contact for this individual?
3. What type of provider should be the initial contact for this individual?
4. What type of provider should be the coordinator of services for this individual?
   
   Now consider what exists in your region to answer questions 5-12.
5. What sources of financial support are available to pay for services for this individual?
6. To what extent are these financial resources sufficient to fill the individual's service needs?
7. What are the current services in your region that would fill the needs of this individual?
8. What agency is this individual and/or family most likely to contact first to enter the service system?
9. How is this individual or family most likely to find out about this agency/organization?
10. What type of provider is this individual and/or family most likely to contact first to enter the service system?
11. How is this individual or family most likely to find out about this provider?
12. What type of provider is most likely to be the coordinator of services for this individual in your region?

Supported in part by project MCJ-23HRW1 from the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services.

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