Interdisciplinary Best Practice: A Case Study of Family and School Support for a Young Child with ASD

Jennifer Drake, Leslie J. Couse, Pamela P. DiNapoli, and Mary Banach

Abstract

The dramatic increase in prevalence of Autism Spectrum Disorders (ASD) has families searching for support and understanding of this neurodevelopmental disability and professionals reexamining their clinical practice. Interdisciplinary best practice, characterized by a collaborative family-centered approach, must go beyond the clinical space to see the child in his/her natural environment for a truly comprehensive diagnosis as well as to support families as they transition in securing supports for their child with autism. This case study examines the experience of one family who received follow-up supports after a clinical evaluation that confirmed the diagnosis of autism for their child. The major themes that emerged for follow-up services were the need for education, support to navigate systems, and encouragement for families in the development of advocacy skills. The effectiveness of follow-up services and implications for diagnostic clinics were investigated.

Keywords: autism , interdisciplinary , best practices , diagnosis , self-advocacy , evaluation , family-centered practice

Author Note: This research was supported in part by Grant # 6 T73 MC 00024-08-01 from the Maternal and Child Health Bureau (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services and Institute on Disability/UCED Innovative Research Initiative Grant

INTRODUCTION

While developmental disabilities are estimated to affect seventeen percent of children under eighteen years of age in the United States (1), the most recent estimates of prevalence of Autism Spectrum Disorder (ASD) are 1 in 150 for all children and 1 in 60 for boys (2). The financial and social implications for families of these children are substantial. Whether this rise in occurrence is because of better identification methods or a true increased prevalence, more children are being diagnosed with developmental disabilities in general and ASD specifically, which profoundly impacts families, schools, and communities (1,2). The dramatic increase in prevalence of ASD has families searching for greater support and understanding and professionals reexamining their clinical practice. A truly comprehensive diagnosis must go beyond the clinical space to see the child in his/her natural environment and support families' transition to securing community supports for their child with autism.

As more children are identified with developmental disabilities, parents struggle to process how such a diagnosis might affect their child and their family (3,4,5,6). After diagnosis, many parents are forced to navigate within the systems alone to acquire services for their child in their schools and homes (6). When asked about the diagnosis process, one parent stressed that, "It was the follow-up that I found hard, because they said some suggestions, but how do you implement those things yourself?" (3). After being given the diagnosis, another couple stated, "There were no services afterwards. Even though we were relieved, what can we do now? There was no one to come in and teach us how to handle things" (3). Many parents clearly want what is best for their child but don't know what that is or how to achieve it (3). There seems to be a steep learning curve in locating the services available and how to navigate the systems to acquire them. Compounded with the emotional strain of accepting a diagnosis, this becomes an oppressive burden for many parents (3).

PROBLEM IDENTIFICATION AND SIGNIFICANCE

Needs of Families with Children with Neurodevelopmental Disabilities

Families supporting children with neurodevelopmental disabilities have greater needs, both emotional and physical, than families with typically developing children (4, 5). Research in the United States and England has found the effects of raising a child with a neurodevelopmental disability to be disruptive and severe (4, 5). Often confronted with either no diagnosis or an incorrect one, families report a great deal of confusion and despair, leaving them to blame themselves for their child's atypical behavior (4). As a result, parents often become isolated from their family, friends, and even healthcare providers, who are frequently unable to effectively support them (4). Since parents of children with autism face greater challenges and concerns than typical parents, they ultimately need more supports (3). At least 50% of parents of a child with a mild to moderate impairment were found to be unresolved in their reactions at two years after the diagnosis was given (6). As a result, researchers concluded that time was not a predictive factor for parent's resolution status regarding their child's diagnosis (6). What is more, parents struggle with not only the emotional impact of such a diagnosis, but also are challenged with how to navigate within the system to acquire services for their child (6). By and large, this is a process they have been forced to endure on their own (6). When a child is diagnosed with an ASD, families need support from specialists who can provide practical assistance and be there to listen (4). When continued support is provided, parents report significantly less emotional distress, anxiety, and depression (5). Ultimately, extended support helps parents better understand how the new diagnosis will affect their family and implement recommendations of the new treatment plan.

Collaborative Professional Partnerships and Family-Centered Care

Care that is family centered, where families are part of a collaborative partnership with professionals, is considered best practice to improve outcomes when a child has a disability (7). Collaborative partnerships are a key component of the Individuals with Disabilities Education Act (IDEA), which was established to inform, design, and implement special education practices (8). Understanding what parents expect within collaborative partnerships is critical to their success, and research has identified that the fundamental concepts of equality, skills, trust, and respect are essential. Additionally, both accessibility and frequency of communication are important to families when developing a quality partnership (9).

In implementing family-centered practice, educators' attitudes consistently support family-centered practice, yet barriers to implementation in the form of limited resources, time, and supportive policies can be challenging to overcome (10). Research has found that autism diagnostic clinics for children generally fail to meet the needs of families in the areas of providing adequate useful information, practical support, and follow-up (11). Ensuring quality communication with families and allowing them adequate time to ask questions and interpret the findings is critical (11). Further, many parents are unable to fully understand results given at the time of the child's diagnosis or evaluation until much later (12). However, there is very little research evaluating clinics that include a follow-up component within their practice. It is hard to know whether this is because the research is scarce or because this type of practice doesn't exist in great frequency. The research would seem to suggest, however, that follow-up services are imperative to ensure the family fully understands clinical recommendations (4, 5, 9, 11, 12). Therefore, this study set out to examine how the addition of follow-up services to an interdisciplinary evaluation could support a family in processing the diagnosis.

Purpose

This study seeks to answer the question, could the diagnostic experience and understanding of families be enhanced through the addition of follow-up services to an interdisciplinary evaluation? Since the clinic is focused on interdisciplinary, evidence-based practice, concern arose that the current model of clinical evaluation, which lacked follow-up services, failed to meet the needs of families (10). In addition, when considering interdisciplinary best practices, the question remains, can clinical diagnostic services be improved by adding follow-up services that assist families in integrating the new diagnostic information and implementing the recommendations? Furthermore, will providing family-centered follow-up services after clinical evaluation and diagnosis of ASD better support families in understanding the diagnosis and integrating it into their lives? To answer these questions, a case study was conducted as part of a larger research project that provided family-centered follow-up services to families after evaluation using the Follow-up Services Enhanced Model of interdisciplinary evaluation. In this case study, the story of one family is examined throughout the intake, evaluation, diagnosis, and follow-up process.

METHODOLOGY

Setting

This interdisciplinary child development evaluation and consultation clinic is located in the northeastern United States. The clinic is staffed through collaboration between an area medical school, children's hospital, a local research university, and the University Center for Excellence on Disability (UCED) and is partially funded through a U.S. Maternal and Child Health Grant. The clinic focuses on teaching advanced graduate students who work side-by-side with clinical faculty conducting interdisciplinary developmental evaluations. The disciplines represented at the evaluation include nursing, pediatrics, social work, education, psychology, communication, audiology, occupational therapy, and nutrition. The nurse's role varies, but may include assessments of the child within the home and school environment. As nurses often are required to operate within multi- or interdisciplinary teams, they are well positioned to correspond closely with the family and lead the team in making decisions and diagnoses by uniting the information obtained by specialty evaluations. Children evaluated at the clinic typically range in age from two to twelve years old with a question of neurodevelopmental disability; the major diagnosis is Autism Spectrum Disorder.

Current Model of Interdisciplinary Evaluation

The clinic approach is family centered and involves parents throughout the data collection process to inform the team and ease the evaluation process for the child. The interdisciplinary team completes a four-hour comprehensive child development evaluation, which includes a pre-clinic home visit and a pre-clinic school visit to provide a context for understanding the child's abilities. Throughout this process, the family's questions drive the priorities and choices of the team. Diagnoses are made based on evaluation of all collected information and not on any single assessment tool. Immediately following clinic evaluation, the team meets with the family to share observations and recommendations, render a diagnosis, and answer additional questions. Follow-up contact after clinical evaluation has traditionally been phone contact, completion of a satisfaction survey, and a seldom-used open invitation to call on clinic staff for support or information after the evaluation.

Design

As a part of a larger project, this case study follows one family participating in an enhanced model of interdisciplinary evaluation providing follow-up services with this evaluation clinic. Examining this case seeks to clarify the ways extended follow-up services support the family in integrating the new diagnostic information and implementing the recommendations with the school and community settings. This project is designed as a qualitative, descriptive case study, examining the use of follow-up services after an interdisciplinary developmental evaluation for a child diagnosed with autism (13, 14). The case study method provides a detailed look at the experience of this family throughout their child's clinical evaluation and follow-up services.

Case Selection

This family was randomly selected, following intake, from the four families seen each month at clinic. The child, Jeremiah, had been seen both under the old model of interdisciplinary evaluation and the new model of enhanced interdisciplinary evaluation, offering researchers an opportunity to examine services for one family using both the existing and the proposed models. Jeremiah* and his father attended clinic when Jeremiah was 3 years and 6 months old. Based upon clinical observations, family interviews, and school reports, Jeremiah was given a tentative diagnosis of ASD, although formal testing was not completed due to an upper respiratory infection. His family was encouraged to return to clinic in one year for a more definitive evaluation. At the second evaluation, Jeremiah's family consented to participate in the Follow-up Project.

* All names have been changed to protect confidentiality.

Specific Aims

The specific aims of this research were to understand the role of follow-up services in enhancing family understanding of the diagnosis, in incorporating clinic recommendations into the child's school program, and in improving connections with needed community supports for families. Additionally, as literature is limited on the impact of follow-up programs after evaluative clinics for children with developmental disabilities, the case study has the potential to offer a clearer direction for future research and, more specifically, for program change within the clinic.

Procedure

The follow-up services began immediately at the second clinic evaluation. When the diagnosis was shared with the family, they were also told they would receive a phone call within a few days to schedule their first follow-up appointment. Subsequent to the clinic evaluation, the nursing, social work, and education disciplines gathered to debrief and plan for the follow-up. Each of the disciplines was involved at all levels of the services, and the nurse specifically was consulted for medical or general health-related concerns. Furthermore, the nurse was able to share her experience within multi- and interdisciplinary teams to enhance collaboration and effectiveness of the team. At the initial home visit, the team worked with the family to develop priorities and determine their needs for follow-up. Follow-up services may include up to three home visits that comprise answering the family's questions as they begin to process what the new diagnosis means for their child, establishing priorities with them for initiating a new care plan based on clinic recommendations, leaving resource information, and linking families with support services in the community. At the request of the family, the team also facilitated a discussion between the school and family about the clinic evaluation and recommendations. During the school visit, the team advocated for the child and family by answering questions about the diagnosis and clinical recommendations in order to affect changes to the child's Individualized Education Plan (IEP) as recommended by the clinic to better meet the child's needs.

Data Analysis

A detailed examination of data gathered in the course of evaluation and follow-up services with this family included medical records, school reports, IEP, case notes, clinic reports, and phone logs. Other sources of data that added richness to the context of understanding this case included interviews with the family and school personnel conducted through home and school visits, meetings, and observations. Finally, community agencies that provided resources matched to the needs of the family provided an additional source of data. To address concerns of internal data sampling, all data gathered from multiple informants and a range of perspectives was examined (14). The group used an iterative process to triangulate the data and identify emerging themes from the case. By convention, the validity and reliability of qualitative data is established through credibility. To ensure credibility of the data (15), themes that emerged were identified by the first author and later independently confirmed by the other authors. In focusing the case study, the data that related most directly to the research questions was analyzed and is presented here.

CASE STUDY

Health and Family History

Jeremiah is a five-year-old, first-born Caucasian male. At two years old, his physician noted a significant speech delay and referred him for evaluation to the Child Development Clinic. He does not display any signs or symptoms of underlying genetic or metabolic disorder and his neurological exams have consistently been unremarkable. His parents (Melissa and Joseph) work outside of the home full time and seek support from extended family, which has some involvement with Jeremiah and his two-year-old brother, Derek. The family's income is low. Melissa completed school through 11th grade and Joseph revealed that he had personal experience as a student in special education, from which he received his high school diploma. Melissa has a history of bipolar disorder for which she has previously received pharmacological intervention, but for which she is not currently being treated. Joseph reports concerns that Jeremiah may have been traumatized during events surrounding his parent's divorce and subsequent reconciliation (i.e., fighting, yelling, etc.). Joseph expressed concerns that these violent outbursts may have caused Jeremiah's social withdrawal. No other significant health or family history was revealed.

Developmental Profile and School Placement

Jeremiah attends preschool three afternoons a week. The classroom is inclusive, with three students identified with delays and four typically developing children. The classroom staff includes a special education teacher and two teaching assistants who utilize an activity-based approach of individual and group instruction. Speech and occupational therapies occur in the classroom in small groups and include all the students. Regular school attendance has been problematic in the past for Jeremiah. He was eligible for public special education services at age three, but transportation and childcare placement prevented his attendance. At age five, however, his grandmother was able to assist with childcare at home so that he could access school-provided transportation. At the time of the clinic evaluation, Jeremiah was due for an IEP review.

In the classroom, Jeremiah tends to do tasks repetitively and likes to organize objects into rows. He moves quickly between activities, never settling in without adult assistance. Jeremiah has a personal picture board to encourage better communication of the daily schedule. His communication is limited to one-word utterances, short phrases and frequent echolalia. At home, Jeremiah's parents noted his speech lags behind his two-year-old brother. They also report he exhibits some sensory sensitivities. Neither school nor family noted motor deficiencies; however, the evaluation confirmed gross and fine motor delays. The family reports little social interaction for Jeremiah. While there are other children at home, childcare, and preschool, Jeremiah rarely engages with them. Finally, while there has been some improvement in the last year, Jeremiah's behavior is of primary concern for the family as he has increased aggression towards his brother, Derek. Following aggressive behavior and in periods of transition, Jeremiah often hits himself and bangs his head.

Clinical Findings and Recommendations

Through clinical observation, home and school visits, review of medical and educational history, and evaluation using multiple standardized measures, the clinic team confirmed a diagnosis of autism. The diagnostic tools used included the Autism Diagnostic Observation Schedule (ADOS)-Module 1 (16), the Preschool Language Scale 4 (17), the School Version of the Assessment of Motor and Process Skills (AMPS) (18), and the Sensory Profile (19). Based on this diagnosis and the clinic's specific developmental findings, the team made recommendations for Jeremiah's on-going medical follow-up, his home environment, and his IEP. Overall, the clinic team recommended more therapies and time in preschool to provide increased instruction and structure to facilitate Jeremiah's communication and general skill development, to better manage his behavior, and to provide increased opportunities for social interaction. Table 1 offers some examples of the clinic team's recommendations.

Interdisciplinary Evaluation with Follow-up Services

Home Follow-up
The Follow-up Services Enhanced Model of interdisciplinary evaluation began approximately two weeks after the clinic evaluation in the home. The goal of the visit was to assist the family in applying for community-based therapy services. Additionally, the follow-up team sought to gain a better understanding of the family's schedule, facilitating possibilities for home-based therapies that coordinated with childcare and increased preschool hours. Specific information about two area service providers was shared. Jeremiah's family agreed that bringing in supports for motor development, speech, and behavior as soon as possible was critical.

The second follow-up home visit occurred approximately three weeks later, shortly after Jeremiah's second and final IEP meeting. The visit was primarily administrative and was used to assist the family with completing paperwork required to acquire in-home supports from outside agencies. The intake process for the Autism Support Program offered by a community mental health agency was reviewed with Melissa. She was given information about state and national autism societies along with plans for the follow-up team to check on the family in two weeks via telephone to determine progress and whether future visits were needed.

School Follow-up
The second part of the Follow-up Services Enhanced Model of interdisciplinary evaluation occurred at Jeremiah's initial IEP meeting, which was attended by Melissa, two members of the follow-up team, and Jeremiah's school team. The school team had conducted a series of assessments at the outset of the school year to get a better sense of Jeremiah's development since the creation of his IEP nearly two years prior. Their assessments included evaluations of personal, social, adaptive, cognitive, motor, and speech/language development. The school evaluation results mirrored the findings of the Child Development Clinic. Due to the extensive nature of the evaluations, sharing the results with Melissa to assure her understanding took the hour scheduled for the meeting, so a second IEP meeting was scheduled for three weeks later.

The second meeting began with a brief review of the last meeting and the diagnostic coding the team would use for Jeremiah to continue receiving services. The team identified his strengths as observed in their interactions with him in the classroom and from the assessments conducted. Melissa and Joseph verbalized their goals for Jeremiah for the next year, which included: speech development; understanding consequences of actions; social development; less aggressive behavior; and increased patience. The school's goals included: developing expressive language and vocabulary; building understanding of receptive language; better speech production; increased social communication; increased exposure to movement and tactile activities to help enhance Jeremiah's tolerance to sensory and motor input; visual motor development; increased independence in activities of daily living; increased application of language and vocabulary development; and reduced anxiety and nervousness with transitions. To meet these goals, Jeremiah's services were increased in frequency and duration in both inclusive preschool and occupational therapy. Table 2 presents the IEP services Jeremiah received pre- and post-clinic evaluation.

Final Follow-up
The final home visit of the Follow-up Services Enhanced Model of interdisciplinary evaluation occurred two months following the implementation of Jeremiah's home- and community-based therapies. The family had no new questions or concerns. In fact, while there were still ongoing issues the family was working to resolve, Melissa stated that they felt very well connected to get help and had started using new contacts to generate solutions. Jeremiah had begun to receive additional occupational therapy outside of school and would begin community-based speech and behavior therapies in a few weeks. Through the community-based agency, the family had begun working with a psychologist who was providing therapies and was acting as a resource for the family to help with other concerns, such as finding a dentist for Jeremiah. In general, Melissa and Joseph reported seeing a lot of changes and growth in Jeremiah. They felt better positioned to support him and more optimistic about his future. While the new IEP with more services was in effect, the family revealed that they had been unable to resolve the childcare dilemma and, as a result, Jeremiah was still attending school only three afternoons a week. Overall, Melissa expressed confidence in the school and her service providers and felt more able to independently advocate for Jeremiah and his needs in both settings.

FINDINGS AND DISCUSSION

Three months after Jeremiah's clinic evaluation and IEP review, his family has seen an increase in the kinds of services and therapies provided to their son. In addition to changes in his school routine, Jeremiah is receiving home-based speech therapy, occupational therapy, and behavioral management from a community-based agency. Furthermore, his parents are more knowledgeable about the services available within the community to best support them as a family. It is important to note that the increase in services followed Jeremiah's second evaluation. Although his first evaluation was less thorough due to illness, no changes to his IEP or home-based community therapies were introduced despite the clinic's recommendations based on the same diagnosis. Following his second evaluation and with the addition of follow-up services, Jeremiah's family secured many services to help enhance his growth and development in the home, school, and community. The level of school and community-based services notably increased.

Certainly, there are several key components that allowed his family greater success at making these changes to support Jeremiah. First, Jeremiah was due for an IEP evaluation that coincided with his interdisciplinary evaluation at the Child Development Clinic. While circumstantial, it allowed for a timely review of his IEP, the incorporation of many suggestions made by the clinic team, and an overall increase in services for Jeremiah. While the parents of children with an IEP are entitled through IDEA to request reevaluation of services at any time, such requests can take time to initiate (8, 20). As a result, for most families, changes to school-based services after an outside evaluation often do not occur so readily. Even for Jeremiah, the IEP review occurred during the course of two meetings, the second of which was held nearly six weeks after his clinic evaluation, and the IEP was not approved and initiated for another two months. Consequently, in the best case scenario, for a child whose IEP is due for review soon after clinical evaluation, tangible changes may not be seen for nearly three months - one third of a school year. This is a significant amount of time in the life of a young child. For a family asking to review an IEP out-of-cycle following a clinic evaluation, the time until service provision changes occur would likely be significantly longer.

Another key component for Jeremiah was the commitment of his family and his school to work collaboratively. Despite their challenging and already full schedules and lacking an extensive support system, Melissa and Joseph had increased the collaboration within their parental partnership and were prepared to make changes to their routine to create an environment that would best suit Jeremiah's needs. This commitment facilitated the implementation of clinic recommendations. While the follow-up services provided the needed support and encouragement to Melissa and Joseph throughout the process of securing services, the family's commitment to Jeremiah was paramount in the success of his story. With the family's commitment to change, the follow-up team was able to help the family anticipate school concerns prior to the IEP meeting and brainstorm effective solutions, ultimately preparing them to effectively advocate and acquire better supports for Jeremiah in school. Using Jeremiah's initial visit to the clinic as a baseline, it is unlikely that such profound changes would have occurred to the IEP without the clinic's follow-up and on-going support.

To answer the research question of whether the diagnostic experience and understanding of families could be enhanced through the addition of follow-up services to an interdisciplinary evaluation, we reflect on the evidence before us. Jeremiah's parents were able to better understand his diagnosis as evidenced by their ability to access community agencies, advocate for the needs of their son, and secure more recommended services for him. They reported feeling well connected to the help they needed and able to generate solutions to the challenges before them. The Follow-up Services Enhanced Model of interdisciplinary evaluation was successful in supporting Jeremiah's family as they processed the diagnosis of autism and how it would affect the family unit, and then discovered how to best support their child.

Limitations

There were several limitations to this case study. By virtue of its design and methodology, generalizability of this project's findings and results is inherently limited. Certainly, additional research with more subjects will be necessary for conclusive and more generalizable results. Furthermore, since several of the authors were involved in both the follow-up intervention and interpretation of data, potential bias is introduced. However, while the authors risk bias, a higher level of trust, intimacy, and knowledge is obtained by their roles both on the team and in interpretation of results.

There were also a few problematic areas of the follow-up process that quickly became apparent during implementation with this family. The anticipated time allotment for follow-up in the design of the project was one month to assess the follow-up needs of the family, implement interventions to meet those needs, connect the family with community resources, assist the family and school in modifying the IEP as necessary, and begin to encourage the development of the family's self-advocacy. However, in Jeremiah's case, this was unrealistic; the last follow-up visit for Jeremiah's family occurred nearly four months after his clinic evaluation. One finding of this case study is the need to allocate at least two months of follow-up time per family.

Additionally, a part of the initial delay in providing follow-up was directly linked to the timely completion of the final report from the clinic. The availability of this report is paramount for any follow-up intervention with the family, especially when working to modify an IEP with the school. While a preliminary summary was available one week following the evaluation, a complete evaluation with specific recommendations is crucial to the follow-up process. If the evaluation and recommendations of the clinic are to be meaningfully implemented, timeliness is critical. This issue has been an on-going concern within clinic administration. Following this case study, new methods and solutions were generated to modify the report-generation process and ensure their timely availability.

IMPLICATIONS AND CONCLUSIONS

The major themes that emerged from the follow-up with Jeremiah's family were the need for education, support to navigate systems, and encouragement for families in the development of their advocacy skills. The case study design offers a picture of the lived experiences of one family with a child with a developmental disability and their challenges accessing the available systems and community resources. Certainly, the case study method contributes a great deal of information to any body of literature (13).

There are many lessons learned through the telling of this family's story. Jeremiah's story imparts the true experience of a family affected by autism and how it can influence the child and family throughout every aspect of their lives. It becomes evident, as previous research indicates, how truly difficult it can be for a family to understand a diagnosis of developmental disability, implement treatment plans in the home, comprehend the effect of such a diagnosis for the long term, and begin to self-advocate within the system to access the services that are critical for their child's growth and development (see 3, 4, 5, 9, 11, 12). This situation may be exacerbated when a family has limited resources or educational level (21), as found in this case study. As healthcare professionals who may encounter the family of a child with a developmental disability in a multitude of environments from the school to the home, from the acute healthcare setting to the primary healthcare clinic, it is imperative to understand the depth of such a condition on family function and how to best support the family. Too often, healthcare professionals assume that advocacy is a skill that comes naturally and that families know how to self-advocate. As evidenced by Jeremiah's family, this is rarely the case. The question remains, then, how can families best be prepared for self-advocacy? A family with a child with developmental disability needs to have a solid understanding of the resources available, how to access them, and how to work within the system to best support their child. Most likely, advocacy will be necessary for the entirety of a child's life and families may, in fact, need to teach such skills to their child. Consequently, how can healthcare professional first begin to consciously teach these skills to families?

As more nurses are moving towards professions within case management in schools and the community, understanding these challenges become paramount. In Jeremiah's case, the nurse played a key role in case management to negotiate community systems, disseminate information, and teach advocacy skills to the family. Additionally, nurses bring knowledge of health systems, wellness promotion, disease management, and disability processes to help families absorb new information and adjust their lifestyles. In this case, the addition of a nurse to the team provided a holistic view of Jeremiah's development as a component of the family's well being and sought to integrate the recommendations made by team members from the various disciplines. This holistic perspective is critical to interdisciplinary teams and may be shared by other professions. However, the nurse offers a unique outlook that allows him/her to both focus on the health assessment data from a nursing perspective and bring together results from other evaluations to provide a much more comprehensive diagnosis and follow-up care to the family and child. In Jeremiah's case, the nurse perspective helped to maintain a family-centered approach to follow-up services by recognizing the importance of health promotion within the family unit, which both contributes to and is affected by Jeremiah's own health and well being.

Teaching the family about advocacy was not a stated goal of the follow-up project and, therefore, was not included in the initial objectives. However, it is clear that with Jeremiah's family this objective would have been an invaluable one to include. The follow-up team may have begun to impart knowledge of self-advocacy to Jeremiah's family, but such teachings were inadvertent. Nonetheless, this emerged as the type of assistance the family most needed. Jeremiah's parents needed to learn about the systems that existed and how to maneuver within them; they needed to learn how to work within a team to best advocate for their child's needs; and finally, they required a more thorough understanding of community supports and how to use them to best support Jeremiah and their family as a whole. As a result, it can be said that within a follow-up program the conscious and deliberate inclusion of self-advocacy skills is important. The nurse on an interdisciplinary team is well positioned to provide case management and intentional teaching of self-advocacy skills. Ultimately, more research is needed on the self-advocacy learning needs of families of children with disabilities and the best practices to teach such skills. This becomes the critical piece for success and independence for families of children with disabilities and individuals with chronic conditions at large. Beyond delivering a diagnosis, support to implement recommendations and navigate the system are essential elements for success for any child and family.

Table 1. Clinic Recommendations

Objective	Intervention	Outcome
Better understanding of Jeremiah's medical history and a more thorough understanding of the genetic components that may be leading to his disability	Genetic testing that may include: routine karyotype (chromosome analysis) and FISH for subtelomeres if routine karyotype is normal, FISH for 22q11 deletion (VCFS syndrome), Fragile-X genetic testing, NeoGen expanded newborn metabolic screen, methylation study for duplication (using the same technique for Angelman syndrome), and urinary adenylsuccinate lyase screen Education and support for Jeremiah's family from his pediatrician	Better understanding of potential cause and outcomes
Communication Development	Teach Jeremiah scripted phrases to help him learn routines and deal with some of his behavior issues. This will help him in situations that might be hard for him. Use Jeremiah's strong ability to imitate others as a natural opportunity to expand his language through modeling. For example, if you are playing with Jeremiah with some cars, roll a car and say "Zoom zoom" or "That's fast". These phrases may be imitated by Jeremiah immediately, or at another time when he is playing cars again. Encourage him for repeating your words.	Increase communication Reduce negative outbursts of frustration
Motor Development	Provide Jeremiah with opportunities for movement in situations in which he feels comfortable and safe. Playground activities such as climbing, slides, and swinging will all help him be less sensitive and fearful.	Increase motor development through play Increase social opportunities

Table 2. A Comparison of School-Based IEP Services and Therapies Pre and Post Clinic Evaluation

Therapies & Services	Prior to clinic evaluation	Post clinic evaluation and follow-up	Change after evaluation and follow-up
Inclusive Preschool Classroom	Three afternoons a week 7.5 hr/wk Standard School Yr. (180 days) 120 days/yr total	Five afternoons a week 12.5 hr/wk Extended School Yr. 210 days	90 additional days/yr 225 hr
Speech therapy	2 group sessions and 1 individual session a week (30-minute sessions) 60-min/wk group 30-min/wk individual	2 group sessions and 1 individual session a week (30-minute sessions) 60-min/week group 30-min/wk individual	Unchanged
Occupational therapy	2 group sessions a week (30-minute sessions) 60-min/wk group	2 group sessions and 1 individual session a week (30-minute sessions) 60-min/wk group 30-min/wk individual	30-min/wk individual therapy
Academic support	Twice a week in a group setting	Three times a week in a group setting and individually as needed	One time/wk in a group setting