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Educational services for children with chronic illnesses: perspectives of educators and families.

* Between the mid-1960s and mid-1980s, the number of children with chronic illnesses doubled (Newacheck, Budetti, & McManus, 1984). In 1985, Hobbs, Perrin, and Ireys estimated that 7.5 million children in the United States under the age of 18 had chronic illnesses. Of those, 750,000 had conditions that were considered to be medically or physiologically severe. If psychological problems, family stress, and the financial difficulties caused by the illness are included in the definition of severity, the number of children would rise to nearly 1 million.

Advances in medical technology have dramatically altered the lives of many children, and a growing list of conditions that were once considered to be terminal are now viewed as chronic but not necessarily life threatening (van Eys, 1979). A child who in the recent past would never have left the hospital may now attend a neighborhood school in a wheelchair with a ventilator and gastrostomy tube (Sirvis, 1988). Families with children who would not have survived because of severe heart, liver, and kidney problems have new hopes with transplanted organs and advanced treatments, as well as new concerns with prescribed medications and home-health-care bills that may exceed $3,500 per month. The Office of Technology Assessment estimates that as many as 100,000 infants and children may rely on technology in some way to mitigate health problems (U.S. Congress, Office of Technology Assessment, 1987). This group of children, referred to as medically fragile or technology dependent (Council for Exceptional Children, 1988), presents new challenges to teachers, administrators, and families (Lehr, 1990).

In the 8 years since the publication of Hobbs, Perrin, and Ireys' (1985) seminal work on chronic illness among school-age children, the impact of human immunodeficiency virus (HIV) infection and its neurodevelopmental abnormalities have been documented among infants and children (Ultmann et al., 1985; Ultmann et al., 1987). Data on the numbers of children with HIV infection are still imprecise, but there is little doubt that the number of cases is increasing (Hopkins, 1989). The Centers for Disease Control (CDC) estimated that by 1991 there would be 10,000 to 20,000 cases of pediatric HIV infection in the United States (Gray, 1989); and although the outcomes for these children are not yet clear, it is apparent that for the duration of their lives, many will be chronically ill (Rubenstein, 1989).

HIV infection has also had an impact on the lives of many children with hemophilia and their families. In March of 1989, CDC reported that more than 1,000 people with hemophilia had been diagnosed as having HIV infection (Whitney, 1989), with transfusions from contaminated blood or blood products as the primary source of infection. This influx of children in a new category of chronic illness, with no changes in the numbers of children affected by other diseases, may have pushed the figures above the 7.5 million estimate of the mid- 1980s.

Historically, educational services for children with chronic illnesses were developed to address specific diseases such as polio and tuberculosis. These services typically followed a medical model and were offered in special schools or centers that segregated students from their peers (Brady, 1988). As the number of occurrences of these diseases was reduced, the school's responsibility became more diffuse. Even following the enactment of Public Law 94-142, which includes health impairments that interfere with education as a category of service under special education, there is considerable variability in the types of services available, their delivery, and their administration.

Despite the increase in the numbers of children with chronic illnesses and the new challenges that they present, few studies have investigated the issues that schools and families encounter in their efforts to meet these children's needs. Johnson, Lubker, and Fowler (1988) surveyed 394 teachers in North Carolina schools to determine their extent of contact with children with chronic illnesses, their training for working with these children, issues of greatest concern to teachers in their work with children with chronic illnesses, and the resources that they had found most helpful. Eighty-six percent of the sample, including teachers at all levels K-12, regular, and special educators, returned the completed questionnaire. Respondents had taught an average of 13.7 years, and one-third were prepared at the master's degree level. Despite their experience and academic preparation, only 38% had completed any formal coursework in chronic illness. Nearly half felt that they were not adequately prepared to work with children with chronic illnesses and wanted coursework that included more information about specific types of chronic illness. Seventy-six percent of the respondents had taught at least one child with a chronic illness during their career, and more than 40% reported having a child with a chronic illness in their classroom at the time of the survey. Of the children in their classroom at the time of the survey, asthma, diabetes, and epilepsy were the most frequently identified, followed by cerebral palsy, heart disease, cancer, and spina bifida (Johnson, Lubker, & Fowler, 1988). Parents were most frequently cited when teachers were asked how they learned of a child's chronic illness, and parents were also the primary sources of information about the child's illness.

Robinson (1987) examined the perspectives of parents of children with chronic illnesses on hospital care for the child. A critical issue that emerged was the need to understand parents' perspectives to be effective in providing hospital care to their children. In interviews with 14 parents, Robinson identified problems or "roadblocks" (p. 185) that families encountered. Foremost among them was the families' desire for normalization and the desire to enhance the quality of their lives within the constraints of the illness. Medical personnel, however, tended to ignore the families' priorities in their preoccupation with curing or fixing the child's problems. In addition, families saw themselves as experts on their child's needs and expected a collegial relationship from health care personnel; health care personnel, however, viewed themselves as in charge of the child's care. Although Robinson's study was related to medical care in a hospital setting, the findings suggested that parents should be asked to describe their concerns and priorities and be partners in the treatment team.

The changing needs of children with chronic illnesses pose some serious questions:

* How can school systems respond most effectively

to the needs of children with chronic illness?

* Should children be served under special education?

If yes, how can procedures be adapted

to allow for the week-to-week differences in

children's educational needs?

* How can we ensure that adequate information

is available to teachers and other school personnel

working with children with chronic

illnesses?

* What do families want for their children with

chronic illness and how can schools help support

families' wishes?

To learn more about these issues, we conducted two parallel interview studies examining the needs of children with chronic illnesses and their families in California, under the sponsorship of the Special Education Division of the California State Department of Education. We sampled school districts and families of children with chronic illnesses from throughout the state to determine the issues that were arising at home and at school as schools and families tried to find ways to meet the needs of these children.

METHOD

Subjects: District Study

In the first study, a stratified sample composed of 100 school districts ( 10% of the districts in California) was selected using the following procedure. The 10 largest, or "mega-districts" with student enrollments over 35,000, were automatically included. The remaining districts were stratified by enrollment into three groups: large districts with enrollments between 10,000 and 35,000 students; medium, with enrollments between 1,000 and 10,000; and small, with student enrollments of under 1,000. Thirty additional districts were then randomly drawn from each of the three strata. Of the 100 selected districts, 96 agreed to participate in the study; however, 16 were unable to respond to the interview questions because they did not provide educational services to children with chronic illnesses. Four districts refused to respond, giving time and the amount of work required as the reason for their refusal. Of these four, only one was a "mega-district."

The findings reported in this section reflect the responses of 80 districts, including:

* 17 small districts (enrollments under 1,000);

* 26 medium districts (enrollments from 1,000

to 10,000);

* 28 large districts (enrollments from 10,000 to

35,000); and

* 9 very large districts (with enrollments of more than 35,000).

Subjects: Family Study

In the parallel study of families of children with chronic illnesses, a nomination procedure was used to select the sample. Each of the 80 participating districts was asked to provide the names and telephone numbers of two families of chronically ill children within their school district who had given their permission to be contacted and interviewed. Although the sample was not random, it was felt that the nomination process was more appropriate for two reasons. First, it met confidentiality standards; second, it helped to ensure that families whose children were in an acute stage of their illness during the time of the study and those who had just experienced the death of a child we're not contacted. We believed that the families' comfort with the process was more inviolable than random sampling. Slightly over half (46) of the participating school districts provided names, and 72 families were reached within the three-call procedure that had been set for making an initial contact to arrange for the interview.

The parent sample was representative of the state by ethnicity, respondents' educational level, job title of the primary wage earner, and the chronic illnesses included. Families from small districts were somewhat underrepresented in the final sample: they made up 6.9% of the sample, whereas those from medium-size districts accounted for 29.2%; those from large districts, 45.8%; and those from very large districts, 18. 1 %. Mothers were the most frequent respondents to the telephone interview (87.5%, n = 63), but five fathers (6.9%) and four "others" (5.6%) also served as respondents. Those identifying themselves as "others" were foster parents and older family members who were primary care-givers for the child with a chronic illness. Twenty-nine percent of the respondents identified themselves as members of cultural, language, or ethnic minority groups.

The range in educational level was broad, extending from below 8th grade through the doctorate; the majority had finished high school and some college. The primary wage earners in the families had a variety of vocations, from unskilled through technical and professional. Likewise, the chronic illnesses of their children varied considerably and included the following diseases: muscular dystrophy, cystic fibrosis, leukemia and other cancers, brain tumors, asthma, spina bifida, sickle cell anemia, epilepsy, anorexia nervosa, tuberous sclerosis, neurofibromatosis, paralysis, heart disease, juvenile rheumatoid arthritis, diabetes, and a wide range of rare disorders.

Interview Instruments

Two parallel interview protocols were designed to elicit information from school districts in the following areas: 1 .The range and type of services provided for

children with chronic illnesses. 2. Problems encountered in providing services. 3. Suggested remedies for those problems, with

particular emphasis on whether a legislative

remedy was required.

The protocol for families included questions in the following areas: 1 .Their experiences in obtaining educational

services for their child. 2. The range and type of services provided. 3. The issues that they and their children have

confronted as a result of the illness. 4. The barriers that they have encountered. 5. Suggested strategies for overcoming those

barriers. 6. Advice that they would give to educators who

work with students with chronic illnesses.

Specific questions were drafted and formatted by the three-person research team, reviewed and revised by State Department of Education personnel with content and research expertise, and subjected to final review and revision by an advisory committee composed of experts from various constituencies, including a director of a Home/Hospital program, an assistant director of special education, a teacher of children with chronic illnesses, a parent of a child who had died of cancer, a university student who had had a chronic illness throughout his educational career, a physician, and a representative from a statewide advocacy group for children with chronic illnesses. A series of open-ended and forced-choice items were used; the majority were open ended.

Procedures

One of the research team members, two graduate students, and a professional interviewer/researcher conducted the interviews. All were trained in the general techniques of telephone interviewing, the specifics of the two interview protocols, and the methods for recording responses. All interviewers were checked initially by a member of the research team to ensure that they were accurate, appropriate, and consistent in their approach; and periodic checks were made for the duration of the study. The completed protocols were also checked for accuracy, completeness, and legibility.

After the district sample was selected, each district was contacted by phone to determine who in the district should be interviewed. In some districts, staff in the office of the superintendent were able to make immediate, accurate referrals to a specific person who was in charge of services for children with chronic illnesses. In others, a series of calls was needed to locate the person with the most knowledge about the program in their district. It took an average of three calls to make the initial contact with the appropriate person in the district.

The interviewer described the study to the contact person and requested his or her participation in the study. If the contact people agreed to participate, an information packet including an interview protocol was mailed to them to enable them to review the questions and prepare for the interview. They were asked to contact two families and seek their permission to be interviewed; and a convenient time for the interview call was scheduled. Although the length of the interviews varied, the average time for each district was 25 min.

After families' names and numbers had been obtained from districts, interviewers began to make initial contacts. Each family was called a minimum of three times, and the calls were placed on different days and at different times of the day and evening. If there was no answer after three calls, the family was excluded from the study. The study was explained to those who were reached and the interviewer invited them to participate. (Because families had previously given school districts permission to submit their names, they were already aware of the general purpose of the study; and all who were reached were eager and willing to participate.) Interviewers then asked whether they would like to be interviewed as part of the call or arrange for another, more convenient time. Parent interviews also varied in length, with an average of 30 min per interview.

FINDINGS AND DISCUSSION

Because of the interrelatedness of the questions in the two studies and the implications that each group's responses have for each other, key findings from the district study and the family study are presented jointly. This organization highlights the points of agreement and disagreement between the two groups.

Prevalence of Chronic Illnesses

Among the districts responding, chronic illness was considered to be a low-incidence disability; an average of 1.8% (range 0 to 10.5%) of the school population was identified as chronically ill. In absolute numbers, the range of students with chronic illnesses varied from 0 in one district to 2,000 in another district, with a median of 25 students per district. Among the 72 families interviewed, 26 different chronic illnesses were reported. Table 1 describes the percentage and number of chronic illnesses represented in the district and the family studies. The diseases listed represent the 12 marker diseases identified in the Vanderbilt studies (Hobbs et al., 1985). The category labeled "other" contains conditions and diseases not identified as markers in the Vanderbilt studies. Nonmarker conditions and diseases named by only one respondent included AIDS, broken bones, injuries due to car accidents hepatitis viruses and pregnancy. [TABULAR DATA 1 OMITTED]

Approximately one-third (30%) of the districts reported that they were beginning to identify younger children with chronic illnesses, and 33.8% reported that they have begun to see students with more severe health problems. Although 35% mentioned that the numbers of students with chronic illness are increasing in their district, nearly two-thirds reported no such change.

Types of Programs and Services

According to district responses, most students with chronic illnesses are not automatically identified as having disabilities. In only eight districts did 100% of the students with chronic illnesses have Individualized Education Programs (IEPs); and in 13 districts, none of the students who are chronically ill had IEPs. On the average, 31 % of the students represented in this study had IEPs. Districts reported that the two most common types of placements (87.5%) were the regular classroom (with no special education or auxiliary services) or the student's own home.

Sixty-eight percent of the children represented in the family study were identified as having disabilities and were being served through an IEP. The remaining children (30.6%), except for one whose family was not sure of the placement, were not being served by special education. Among the family sample, children had received services in a variety of settings, and fewer than half (41.7%) had received uninterrupted educational services during the past year.

Barriers to Service

District representatives were asked to name three major barriers they encountered in providing appropriate educational services to students with chronic illnesses, and parents were asked to list the three major barriers that they had encountered when trying to obtain appropriate educational services for their son or daughter. District representatives provided a long list of barriers, and there was relatively high agreement in response across districts regardless of size or programs offered. Table 2 lists the barriers mentioned more than five times by districts and those mentioned more than five times by families.
TABLE 2
Barriers Cited More Than Five Times by
Districts or Families
Barrier % Cited Number
 District
Lack of adequate funding 28.8 23
Lack of public and staff
awareness 27.5 22
Inadequate services 12.5 10
Not enough teachers for
these students 11.3 9
Children fall behind in their
schoolwork 8.8 7
Children's absences 8.8 7
Uncooperative parents 8.8 7
Responsibility in the system
for these students unclear 7.5 6
 Family
Teachers don't understand
child's needs 9.7 7
School systems and teachers
are misinformed about
the illness 8.3 6


The difference between the responses of school personnel and families on this item is dramatic. Parents reported far fewer barriers than districts, and there was considerably less consensus among parents. This may be attributable to a variety of reasons. Overall, parents were pleased with the educational programs and services that their children had received; 88% reported that they were either "very satisfied" or "generally satisfied" with the educational services. Seventy-six percent reported no difficulty in obtaining educational services, and 70% said that services had been available "usually" or "most of the time." Consequently, the parents interviewed may have encountered fewer barriers to service than the literature typically suggests. The higher ratio of unique responses to similar responses among the parents interviewed may be related to the particular child and his or her illness. Obtaining educational services for a child with rapidly deteriorating muscular dystrophy may be quite different from obtaining services for a child with asthma or a partially controlled seizure disorder. Interestingly, the two barriers that parents did cite can be subsumed under the district-named barrier of lack of public and staff awareness. Parents and district personnel agree that teachers and other school staff members are not well informed about chronic diseases and their classroom implications.

District personnel were highly consistent in their responses to the question about barriers. The barriers cited by district representatives can be viewed as subsets of two larger problems--systemic problems and lack of understanding or acceptance of the needs of students with chronic illnesses. Funding difficulties, lack of awareness, inadequate services, and lack of clarification of roles and responsibilities are systemic barriers that can be addressed and resolved. The remaining four are related to the specific characteristics and needs of students who are chronically ill. Almost by definition, these students are absent more frequently, tend to fall behind academically, and may have parents who feel that their child's educational course needs to be somewhat different from that of his or her peers. Citing an inadequate number of teachers for these students suggests that districts view services for students who are chronically ill as a specialty area with its own requirements and

credentials, rather than a responsibility that all personnel within the district share. This presents an interesting inconsistency because the majority of students with chronic illnesses are served in regular classrooms.

District personnel's concerns about lack of funding and inadequate services may have been affected by the fact that many of the children represented in the study were served in their own homes. Given that the model of in-home service typically involves an itinerant teacher visiting the child for an hour a day, it is not surprising that district personnel were concerned about lack of funds and inadequate services. This model is particularly weak when students reach high school and one teacher attempts to cover the entire curriculum. Few teachers have been trained to teach subjects as diverse as chemistry, advanced English, Spanish, and algebra, a schedule that would not be atypical for a student in high school.

Strategies for Overcoming Service Barriers

District representatives and families were asked to suggest strategies for overcoming the barriers that they have encountered. A compilation of those suggestions is shown in Table 3. These suggestions provide a range of constructive strategies that districts can consider as they formulate and review services for students with chronic illnesses. They also underscore the agreement between parents and school personnel on the importance of communication and seeking solutions that are tailored to the changing needs of the child at various stages of the illness. [TABULAR DATA 3 OMITTED]

Problems of Children with Chronic Illnesses

The lives of children who are chronically ill are irrevocably changed. For some, the changes may pose no more than an annoyance or inconvenience; for others, the changes are profound. School district representatives and parents were asked what they felt were the most serious problems that children with chronic illnesses encounter. The perspectives of home and school were understandably different: school personnel focused on classroom and programming issues, and parents focused on the child's life. The five problems most frequently mentioned by each group are shown in Table 4.
TABLE 4
Districts' and Families' Perceptions of the Problems Most Frequently Encountered
 by
Children with Chronic Illnesses
Districts' Perceptions Families' Perceptions
Absences (27%) Other(a) (43%)
Falling behind in school(13%) Feeling different (31%)
Lack of interaction with peers (13%) Constant medical procedures (8%)
School can't meet child's needs (12%) Pain (7%)
Social adjustment (11%) Facing death (6%)
(a) perceptions listed by families included restrictions on
a child's activities, exercise, diet, and mobility, as well


As in the question related to barriers, parents' responses to the problems that their children encounter were more varied than those mentioned by district personnel. Among parents, there were 23 unique responses listed as "other": the most common were restrictions on the child's activities, exercise, diet, and mobility. Many comments dealt with social and emotional issues, such as extreme embarrassment caused by the side effects of treatment (e.g., loss of hair or dramatic changes in weight), acceptance of the illness and its prognosis, and isolation from peers and family members. Parents highlighted the pervasiveness of the illness in their child's life and poignantly underscored how difficult it is for a child to grow up sick. Parents were also asked what they thought their child's greatest concern was when he or she returned to school following an acute stage of the illness or a prolonged hospitalization. Forty-five percent felt their child was most concerned about being behind classmates in schoolwork. Twenty-three percent felt that their child worried about not being accepted by other children, and 15% thought they were concerned about differences in their physical appearance. These worries caused some children to dislike and avoid school. For others, the reactions were not as negative, but the fears and worries created one more burden for the child. The parents' emphasis on the child's need for social and emotional support, as well as academic assistance, is a message that districts need to consider as they develop and revitalize programs and services for students with chronic illnesses.

Families' Advice to Teachers

Parents were asked what they would like to say if they could give just one piece of advice to teachers. Their responses focused on the following: treating the child normally, being better informed about the illness and its implications, communicating with parents, remaining hopeful, building children's confidence and self-esteem, and being sensitive to the needs of the entire family. Parents also acknowledged the positive experiences that they have had with teachers and other professionals and offered their thanks and encouragement to those who share their concerns.

ISSUES, IMPLICATIONS, AND RECOMMENDATIONS

Although these studies were confined to one state, they supported and extended findings of studies conducted in other areas of the United States. They also highlighted schools' and families' differing concerns and priorities related to educational services. Based on the results of these two parallel studies, we make the following recommendations.

Matching Students' Needs to the Delivery System

Children with chronic illnesses present educational needs that differ in many ways from those of children with other disabilities. Chronic illness may affect the child's energy and concentration, but it seldom affects cognitive skill or potential. Although chronic illnesses are long lasting, they vary in their intensity. Some children may spend months or years in remission with only occasional periods of acute episodes; others may be in a nearly perpetual state of illness or recuperation. For most, a regular classroom with home/hospital tutoring options is all that is needed; for others, a full array of special education programs and services is necessary.

In addition to the changing course of the illness, treatments and their accompanying side effects also vary. As new medications and treatment regimens become available and are tried, children are subject to unpredictable ups and downs. This roller coaster of changing needs is unlike that of any other disability. Therefore, it is important to ensure that the educational needs of students with chronic illnesses are carefully matched to the appropriate service delivery system. Throughout their school years, students with chronic illnesses may move in and out of the regular and special education programs, and it is critical to monitor their needs closely so that they are able to get needed services in an efficient and timely manner. For example, students receiving in-home tutoring through regular education may benefit from being served as regular education students because this designation does not require that an IEP team be reconvened to agree on a change in status when they are able to return to school. Conversely, in districts in which in-home tutoring can only be provided through special education, it would be important to ensure that students requiring these services have IEPs.

Although the extended procedures and potentially stigmatizing effects of the special education system argue against it as the system most appropriate for all students who have chronic illnesses, there are several features that are advantageous. The accountability built into services and their evaluation, the partnership between parents and teacher, the procedural safeguards, and the assignment of authority are all characteristics of programs that make sense for children with chronic illnesses.

The strengths and weaknesses of current regular and special education systems, the range of educational options that students with chronic illnesses need, and the flexibility and rapid response time that is required for students with some chronic illnesses suggest that a coordinated partnership between regular and special education programs and services presents the best approach to service delivery. Such a proposal is in keeping with the philosophy that all students should begin with the regular classroom environment, adding only those supports that are needed; and it affirms that students with chronic illnesses are the responsibility of the entire school.

Changes in Training

Regardless of the educational system that is selected, one finding of the study was clear: teachers and other school personnel are not well informed about chronic illnesses and their educational implications. In states such as California, regular classroom teachers receive a preliminary credential with no more than a 3-hr lecture that focuses on physical disabilities and chronic illnesses. Resource specialists who could be instrumental in coordinating services for students with chronic illnesses may have no more training in chronic illnesses than do their regular education colleagues. When the dearth of health professionals in the schools is also considered, the need for increased preservice and inservice training is evident. Traditional training approaches that catalog diseases and their medical manifestations provide little that is useful in the classroom; because the information is seldom needed, it is easily forgotten.

To address teachers and other personnel's information needs as they occur, two approaches are recommended. The first is the preparation of short information packets about each of the most frequently occurring chronic illnesses. Each packet should contain a clear, concise description of the illness and its medical manifestations, including common medications and treatments and their side effects and the prognosis of the disease. Packets should also include information on educational and social complications along with tips for instruction and interaction. Each packet should be supplemented with a list of resources, including organizations and print and nonprint materials that teachers and students could use to increase their knowledge and understanding. All teachers and other school personnel from bus drivers to psychologists who are in contact with a student with chronic illness should receive the appropriate packet.

In addition, a series of roundtables or forums for addressing the chronic illnesses most prevalent in the district should be held. The first priority for attendance would be those teachers and staff currently working with students who have the illness being discussed. Ideally, roundtables should include medical and other health professionals, parents of a child with the illness, and a teacher or other individual experienced in the educational issues. In most instances, a student or an adult with the illness should be included. The roundtable should provide accurate, up-to-date information and an opportunity for open, uncensored questioning. Videotaping roundtables would provide a tape library, which could be used to supplement the information packets and serve as a longer-term resource.

Preservice training should focus on teaching students how to get information about chronic illnesses and how to use resources such as research and advocacy organizations, books such as the Physicians' Desk Reference (PDR) and Merck Manual, and computer databases such as Medline. Teachers in training may even be required to develop their own information packets for use in their first years of teaching.

Changes in Philosophy

The parents interviewed in this study underscored the pervasiveness of chronic illness in the life of their child and family. Although most did not want their children to be singled out or treated differently, they did emphasize the social and emotional needs of the child. Even though academic competence is typically the school's first priority, students with chronic illnesses may benefit equally from individual and group counselling, support groups, and the full range of extracurricular activities that are an integral part of education.

SUMMARY

Although the number of school-age children and adolescents with chronic illnesses is increasing, this group of students has received the least amount of attention in the educational literature. In California, programs and services for these students vary widely from district to district. The locus of responsibility and authority is often unclear, as are the roles of regular and special education. Although parents and school district personnel are united in their desire to develop and maintain high-quality, appropriate services, they sometimes differ in their descriptions of those services. To improve educational programs and services for students with chronic illnesses, we have presented recommendations for maintaining options within the educational system, for strengthening training, and for reviewing the philosophy that underpins services for children who are chronically ill and their families. Our intent is to initiate discussion, debate, review, and reevaluation as programs for these students enter the 21st century.

REFERENCES

Brady, R. C. (1988). Physical and other health handicaps. In E. W. Lynch & R. B. Lewis (Eds.), Exceptional children and adults: An introduction to special education (pp. 136-179). Glenview, IL: Scott, Foresman. Council for Exceptional Children. (1988). Final report: CEC ad hoc committee on medically fragile students. Reston, VA: Author. Gray, C. D. (1989). Opening comments on the Conference on Developmental Disabilities and HIV Infection. Mental Retardation, 27(4), 199-200. Hobbs, N., Perrin, J. M., & Ireys, H. J. (1985). Chronically ill children and their families. San Francisco: Jossey-Bass. Hopkins, K. M. (1989). Emerging patterns of services and case finding for children with HIV infection. Mental Retardation, 27(4), 219-222. Johnson, M. P., Lubker, B. B., & Fowler, M. G. (1988). Teacher needs assessment for the educational management of children with chronic illnesses. Journal of School Health, 58, 232-235. Lehr, D. H. (1990). Providing education to students with complex health care needs. Focus on Exceptional Children, 22(7), 1-12. Newacheck, P. W., Budetti, P. P., & McManus, P. (1984). Trends in childhood disability. American Journal of Public Health, 74, 232-236. Robinson, C. A. (1987). Roadblocks to family centered care when a chronically ill child is hospitalized. Maternal-Child Nursing Journal, 16, 181-193. Rubenstein, A. (1989). Background, epidemiology, and impact of HIV infection in children. Mental Retardation, 27(4), 209-211. Sirvis, B. (1988). Students with special health care needs. TEACHING Exceptional Children, 29(4),40-44. Ultmann, M. H., Belman, A. L., Ruff, H. A., Novick, B. E., Cone-Wesson, B., Cohen, H. J., & Rubenstein, A. (1985). Developmental abnormalities in infants and children with acquired immune deficiency syndrome (AIDS) and AIDS Related Complex. Developmental Medicine and Child Neurology, 27, 563-671. Ultmann, M. H., Diamond, G. W., Ruff, H. A., Belman, A. L., Novick, B. E., Rubenstein, A., & Cohen, H. J. (I 987). Developmental abnormalities in children with acquired immunodeficiency syndrome (AIDS): A follow-up study. International Journal of Neuroscience, 32, 661-667. U.S. Congress, Office of Technology Assessment. (I 987). Technology-dependent children: Hospital v. home care--A technical memorandum (OTA-TM-H-38). Washington, DC: U.S. Government Printing Office. van Eys, J. (1979). The normally sick child. In J. van Eys (Ed.), The normally sick child (pp. 11-27). Baltimore: University Park Press. Whitney, C. K. (1989). The impact of HIV infection on the hemophilia community. Mental Retardation, 27(4), 227-228.

ELEANOR W. LYNCH (CEC #555) is a Professor and RENA B. LEWIS (CEC #555) is a Professor in the Department of Special Education at San Diego State University, San Diego, California. DIANE S. MURPHY is an Assistant Professor in the Department of Teacher Education at Seattle University, Seattle, Washington.

This study was supported by a Special Study Grant (#37-0365 1-X842-00-86) from the Special Education Division, California State Department of Education. Findings, conclusions, and opinions expressed in this article are those of the authors. They do not reflect the official position of the California State Department of Education, and no endorsement is implied.

Manuscript received November 1990; revision accepted July 1991.
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Author:Lynch, Eleanor W.; Lewis, Rena B.; Murphy, Diane S.
Publication:Exceptional Children
Date:Dec 1, 1992
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