The world for children and youth with disabilities and their families has changed rapidly. Abetted by continued advances in legislation governing civil rights, educational access, and health care, children with chronic conditions and their families insist on substantive participation in American life. However, the impact of these diverse and significant strides can be blunted by families' own low expectations, subtle prejudices of those in the caregiving community and lack of a broadly based systems approach to service delivery. A strong base of knowledge and training is essential to overcome these obstacles. This paper will describe the implementation and evaluation of a multidisciplinary course, Access to Services for Children with Chronic Conditions and Disabilities (MCH 220) offered by the Department of Maternal and Child Health (School of Public Health) at the University of North Carolina at Chapel Hill.

Background

Access to services is a critical consideration in the implementation of programs to promote health and quality of life for children and youth with chronic conditions and their families. The ability to understand the vision and the impact of legislative initiatives, the disabilities rights movement, and implementation of both at the local level requires coursework that enhances students' knowledge and analytic abilities. Assignments are designed to stimulate the students' interest in issues of access to services for children and youth with special needs, and students' understanding of these issues from the perspective of the child, the family, the service provider, and the program administrator. The goals of the class include the creation of shared experiences that are useful in other classes. Early in the course, the concepts and terms used to describe this population, and its typical and unique needs, are examined in order to identify discipline-specific perspectives, values and assumptions and, most importantly, to introduce a public health perspective.

Children with chronic conditions require not only primary and specialty care in the health services system, but also many non-medical services. Professionals in this field must have knowledge of the range of services that can benefit these children, the ability to keep up with the changing service delivery and financing systems, and the skill to analyze interventions. The students who take the course are pursuing degrees in Education, Nursing, Social Work, or Medicine, often conjointly with a degree in Public Health. The course must thus accommodate the diverse learning objectives of these students. On average, approximately 12 students enroll each semester.

The population of children with chronic conditions and disabilities is estimated to range from 14.8% to 18.2% of the total population of children in the United States (Stein, 2001). Although comparatively small, this segment of the child population claims a portion of health care resources disproportionate to its numbers. Course participants examine current programs, interventions, and public policies from a population-based (public health) perspective. Public health is an applied activity. Its mission is to fulfill society's interest in assuring conditions in which people can be healthy (Institute of Medicine, 1988). Similarly, the field of disability studies engages in active dialogue about the political implications of definitions of children and youth with special needs and effective advocacy for this population. Both fields share a focus on the environmental and social determinants of health. Thus, the course provides a significant forum for examining the relationship between health and social opportunity.

Each student selects a state to use as a specific point of reference in discussions and assignments. In addition, each student is matched with a family that has a child with a chronic condition. Guest lecturers include an adult who has lived with a disability since birth, professional staff in the service sector, and other state and community health and disability advocates, in order to convey the different perspectives from which issues related to access are viewed. Their contributions reinforce the importance of integrating diverse perspectives when designing, monitoring and evaluating the success of interdisciplinary, community-based programs. Because personal beliefs and values often shape professional viewpoints, the course, through written assignments and class discussion, provides a forum for students to examine and articulate their experiences and assumptions about children and youth with disabilities.

MCH 220 has been taught for 20 years. The course has evolved over time in response to students' suggestions and significant new data and new paradigms for understanding the diverse needs of the population of children with disabilities and their families.

Methods

The course is a hybrid of problem-based learning and the traditional seminar. In problem-based learning, case problems form the organizing focus and stimulus for developing problem-solving skills. Students acquire the knowledge they need to understand the problem through self-directed learning, assigned readings, lectures on specific topics, and guest speakers. The case examples teach students to analyze the impact of legislation, the consequences of varying eligibility criteria, and how child and family needs and access to services change over the course of development.

One case example is derived from a non-fiction book about a child with a disabling condition and his or her family. The books have included Journey (Massie and Massie, 1976), the Broken Cord (Dorris, 1990) and The Spirit Catches You and You Fall Down (Fadiman, 1997). These books also illuminate cultural variation in a family's response to a child's condition, cultural attitudes toward disabilities and how cultural background affects adaptation.

The family to which students are assigned forms the basis for the second case example. Thus, one case example is common to all the students and the second is particular to individual students.

Family Assignment

Each student is assigned to a family with a child with a chronic health or developmental condition to learn more about how the family learned about and obtained needed services. Although the child's condition is important to understand, the focus is less on the child than on the family. Students have four required contacts with each family. Students meet their families at an informal dinner, to which all the families are invited. This dinner offers a broad vista of daily life across a number of conditions and ages. Issues of care (e.g., feeding) and behavior (e.g., supervising children) are more apparent in this setting than they might be in students' meetings with their assigned families. Students subsequently meet with the families on two occasions, where the focus is determined by the student's interests and what the family decides would create the best learning opportunity. For example, some students attend an IEP (Individual Education Program) meeting, or attend a specialty clinic appointment or an advocacy meeting. Most families invite the student to their homes for at least one visit. The fourth meeting is for the purposes of evaluating this experience and is conducted just with the student and one or both parents. Usually just one parent attends this meeting and the tenor is different from other meetings. Careful planning, and even a contract, supports the families in their teaching role. A small grant helps defray some of the expenses associated with the course, including a small stipend for families to recognize their contributions.

Students prepare short papers after meeting with their family. The first paper is a personal, reflective narrative about the family and describes the student's initial contacts where the family has shared the insights, feelings, and experiences that have occurred as a result of having a child with a chronic condition. Students are asked to discuss the family, the child with a chronic condition, the challenges the family faces and their personal reaction to the family's situation. For example, students are asked to address the level of services available to the family, whether they believe this level of services is reasonable, the family's opinion about the level of services they receive and the student's own opinion. Students are also asked to address the questions the family's situation raises for them as a public health professional. The second paper is more analytical. The student is asked to describe the family from a public health, or systems, perspective, including identifying the most salient issues (e.g. economic, health care, other services) that relate to this family's situation, the ways in which these issues have changed over the years, the stimulus for the changes, or barriers to changes, and changes the student recommends. Students are expected to use scholarly references to support their viewpoint. Over the course of the semester, students examine variations among individuals with chronic illnesses or disabilities, thereby reinforcing the importance of collaboration between families and professionals in service delivery and the intersection between the child's and family's development and a chronic condition.

Legislation and Public Policy Assignments

Federal and state laws provide the foundation and overarching vision for serving children with special health care needs. Within this framework, legislation influences how health and educational services for children with special needs and their families are delivered, monitored, and financed. Although Government plays a key role in supporting children with special health care needs and their families, the strengths and limitations of this role are frequently deliberated. As a result, in addition to discussing legislation such as Title V (Children with Special Health Care Needs [CSHCN] Program), Individuals with Educational Disabilities Act (IDEA), SSI, Vocational Rehabilitation, and the Americans with Disabilities Act, guest speakers share how these laws are implemented and critically assessed at the community level. Assignments related to several conceptual anchors inform much of the discussion about policies and legislation: Performance Measures (Title V Block Grant), Health Objectives for the Year 2010 and Federal Regulations.

Health Objectives for the year 2010

These objectives, specifically Objective 16.23, ("Increase the proportion of Territories and States that have service systems for children with special health care needs") emphasize the development of a system of care for children with special health care needs and their families. Indicators were developed for each objective (U.S. DHHS November, 2000). Currently, these indicators and the overall objective are considered to be the standard for a state's programmatic initiatives for serving children with special health care needs and their families. Students were asked to write a brief paper commenting on the objective and indicators with respect to their usefulness and measurability using examples from their selected state.

Performance Measures

In 1993, the Government Performance and Results Act (GPRA) linked policy and funding decisions to accountability-oriented reporting requirements for federal programs (U.S. Department of Health and Human Services web site). As a result, the Maternal and Child Health Bureau (Health Services and Resources Administration) developed performance standards for state Title V programs, which are closely tied to the Health Objectives for the Year 2010. The measures were developed to assess overall program performance; impact of the individual program components on the community and quality of services provided to maternal and child health populations. Students were asked to discuss the usefulness of, and possible alternatives to, the Performance Measures for children with special health care needs.

Federal Register Workbook

Many laws enacted by Congress require agencies to develop and issue regulations. The Federal Register is the medium for notifying the public of official agency actions; all regulations must be published in the Federal Register. The Federal Register system and the detailed regulations that address complex social and economic issues are addressed. A "workbook" of the recent regulations pertaining to legislation about children with disabilities (e.g. Education, Maternal and Child Health, Developmental Disabilities, Supplemental Security Income, Americans with Disabilities Act, Medicaid) is used to guide discussions about developing a hypothetical program. Contrary to expectation, the regulations are eminently readable.

Guest lectures by professionals in the field expose students to the array of perspectives that shape programs for children and youth with special health care needs, including those of program administrators and service providers. Contact with community-based professionals who work with programs for children with special needs and their families reinforces classroom learning, and helps students integrate theory with direct observation.

Evaluation

MCH 220 is an elective rather than a required course. As a result, evaluations are usually skewed toward the positive. Standard course evaluations offer students an opportunity to assess the strengths and weaknesses of the course over all (the student's opinion about whether a course met the student's learning objectives, whether the instructor was responsive to learning needs, managed the course well, etc.). A second instrument, specifically focused on the family assignment, assesses the impact of this experience on student's attitudes and knowledge. On a scale of "(1) Not at all," to "(5) To a Great Extent," students are asked to rate the instructor's performance on 6 questions (e.g., To what extent did the instructor show expertise in the subject matter?), 8 questions about the course in general (e.g., To what extent did the course meet stated objectives?) and two summary questions (e.g., As a whole, to what extent were you satisfied with the course?). Responses to these questions have consistently been "Outstanding" or "Very Good."

Students are asked to describe the extent to which they have had direct personal or professional contact with children who have chronic illnesses or disabilities. Other questions address whether orientation before the first visit was sufficient and whether preliminary activities or assignments were helpful in preparing them for the first meeting with the family. Most students report that they have had moderate professional contact as a physician, nurse, social worker, or other health professional with families of a child with disabilities, but virtually no personal contact as a close relative (sibling, parent or other close family member).

Most students report that preliminary activities or assignments were helpful in preparing them to meet with their assigned family and include the following: Becoming oriented with a role other than the "professional;" reading The Broken Cord and having some background information before meeting the family; in-class discussion about having an informal dinner with the family prior to the event; and meeting the family at the group dinner.

Students are evenly divided on their opinion about whether the second visit was different from the first. Students who felt it was different made comments such as: "The first visit followed the families daily activities (school, home, eating). The second included more formal discussion with both parents. More info on services was gained at the second meeting," or "We spoke at a much more deep and personal level."

Students were evenly divided on whether spending time with the families changed their beliefs and attitudes toward children with special health needs and their families. Students who said it did change their beliefs and attitudes, explained:

• "It helped me understand better the numerous obstacles children may face in making friends, at school. It also helped me appreciate the variety of circumstances different families face (particularly when all the families met together for the dinner and then the evaluation meeting)."
• "Reminded me of what is important in dealing with families – their needs & their perspective."
• "I was exposed to physical disabilities and I learned a lot about them. My beliefs were virtually non-existent before this time. I knew very little."
• "I had always worked with families & children who are much higher functioning. This expanded my view of services that might be needed and taught me great respect for the coping capabilities of families."
• "I saw how well children with severe illnesses can do in a supportive environment. I now know that a diagnosis is not the last word in a child's prognosis."

Students were evenly divided on whether they experienced sudden insight or a sense of "seeing things differently" at any point during the visits. They described any new insights in the following ways:

• "I've worked with children with special needs in a health care setting – but I haven't had a lot of experience on a personal level. Getting to know 'my family' personally gave me more insight into the way parents care for their children and the obstacles that you are often less aware of as a health professional/student."
• "This experience really made me question education as experienced by kids with special needs. Stories of this family's experience made me wonder 'whose side' are these teachers/administrators on?'"

Students offered the following overall comments about their experiences with families:

• "It's a wonderful opportunity to learn from observation and experience and ask questions."
• "I found it invaluable to experience day to day life from the perspective of the family – what I might perceive to be important may not be so for the family, etc. this will definitely enhance my professional career."
• "I would to it again because in this somewhat 'sterile' academic environment, I have had no other opportunities to know/remember why I am here.
• "I would definitely do this again! This experience taught the value of family-centered care & about the lives of kids & families with special needs that could not be replicated in a classroom."
• "It was inspiring to meet them and see how love sustains them through adversity. I learned a lot in a way that you can't get from books or class discussions – the kind of learning that happens at a subconscious, unquantifiable level. I've heard it said that 'you can't teach bedside manner,' but maybe this experience is a way to do it. I know it has affected the way I will see families who struggle with chronic illnesses."
• "This was an invaluable experience."

Parents described considerable satisfaction with this experience. Parents reported that the opportunity to meet with a student on more than one occasion helped them frame a more substantive learning experience. Parents also expressed appreciation for the modest financial recognition for their time. Almost all parents have asked to have this kind of experience with the class again. The involvement of the same family over several years exposes students to variations in the stages of development that children with chronic conditions and their family's experience, including transition to adult services.

Conclusion

Educational theorists have long appreciated the value of experience in learning, as the early work of Dewey, Piaget, Vygotsky, and Lewin in the first half of the 20^th century attests. Empirical research lends support to these theories, demonstrating the effectiveness of experience as a critical learning tool (see Cantor, 1995). The most effective learning takes place when texts, theory, and experience come together in a way that stimulates both students' intellects and emotions. As a result, students come to have a stake in the issues they seek to understand from a public health perspective including the contributions that can be made by public health professionals to improved outcomes for children and youth with disabilities. This course allows students to see first hand how families cope with the difficulties of organizing health care and related services for their children with chronic conditions. At the same time, students are able to compare these experiences with the narrative described in the assigned book. Through the study of the legislation regulating health care, students come to appreciate the complexity of matching health policy and a disability perspective to the needs of families and the crucial role of advocacy.

Acknowledgments

I thank Ed Neal, Ph.D., Director of Faculty Development University of North Carolina at Chapel Hill, Center for Teaching and Learning for his consistent enthusiasm about this course and his stimulating suggestions over the years and Marcia Roth, MPH, for reviewing this manuscript from the vantage point of her professional expertise in the arenas of public health and disabilities. Many of the ideas for the course were discussed in a National Advisory Group for developing a Curriculum on Children with Special Health Care Needs and Their Families (Ireys, HT, Johns Hopkins University, April 1994, First Edition).

References

Cantor, J. A. (1995). Experiential learning in higher education. ASHE-ERIC Higher Education Report No. 7. Washington, DC: The George Washington University, Graduate School of Education and Human Development.

Dorris, M. (1990). The Broken Cord. New York: Harper and Row

Fadiman, A. (1997). The Spirit Catches You and You Fall Down. New York: Farrar, Straus, and Giroux

Massie, R. and Massie, S. (1976). Journey. New York: Warner Books

Stein, R. E. K. (2001). Challenges in Long-Term Health Care for Children. Ambulatory Pediatrics 2001; 1:280-288.

U.S. Department of Health and Human Services. Health Resources and Services Administration, Maternal and Child Health Bureau. Title V Information System, National Core Performance Measures. Available from: https://performance.hrsa.gov/mchb/mchreports/Search/core/cormenu.asp#NPM Accessed October 4, 2004.

U.S. Department of Health and Human Services. /Healthy People 2010: Understanding and Improving Health. /2nd ed. Washington, DC: U.S. Government Printing Office, November 2000.