Coordinating Autism Care Across Schools and Medical Settings: Considerations for School Psychologists

Abstract

Optimal service delivery for students with autism spectrum disorder (ASD) often involves interdisciplinary care coordination between primary care clinicians, community-based providers, and school personnel such as school psychologists. Interdisciplinary care coordination includes communication and collaboration from multiple providers to facilitate comprehensive services that are accessible and continuous while promoting effective partnerships across the home, school, and community systems. Unfortunately, school psychologists report barriers to collaborating with providers outside the school setting around service delivery, including a mismatch in eligibility criteria for educational classifications verses medical diagnoses, lack of delineated roles and responsibilities of other providers, and a limited infrastructure around information sharing. This article (a) delineates roles and functions of school psychologists in coordinating care for students with ASD, (b) highlights potential barriers to care coordination from the perspective of school psychologists, and (c) provides practice considerations, objectives, and direct application activities to overcome barriers to care coordination.

Keywords

autism spectrum disorder care coordination integrated care interprofessional collaboration school psychologists

Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder. Many students with ASD experience co-occurring medical and mental health problems (Baio, 2014; Cubala-Kucharska, 2010; Salazar et al., 2015; Simonoff et al., 2008). Research suggests that outcomes for these students are enhanced when providers coordinate care across settings, including school personnel (e.g., school psychologists), primary care clinicians (e.g., pediatricians, family medicine physicians, and nurses), and community-based providers (e.g., behavior therapists, speech-language pathologists, psychologists, and psychiatrists; Ritzema et al., 2014). Although there are several potential school-based providers who may be positioned to facilitate this cross-setting care coordination, this article focuses on the role of school psychologists given the competencies that these providers possess pertaining to cognitive, academic, behavioral, and medical challenges that students with ASD face (McClain et al., 2019). This article (a) delineates possible roles and functions of school psychologists in facilitating care coordination for students with ASD, (b) highlights potential barriers to care coordination from the perspective of school psychologists, and (c) provides practice considerations, objectives, and direct application activities to overcome these barriers to care coordination.

Rationale for Care Coordination

Care coordination involves a group of professionals across settings working together to streamline information and roles in an effort to provide care that is efficient, continuous, and effective from a time and resource perspective. Care coordination is increasingly emphasized in medical settings, although little research has delineated models that coordinate care between medical settings and schools. Care coordination is particularly important for students with ASD as they often experience co-occurring medical and mental health difficulties (e.g., seizures, gastrointestinal issues, sleep problems, attention-deficit/hyperactivity disorder [ADHD], anxiety and mood disorders, intellectual disability, speech/language impairments, and/or academic problems) that require care from various professionals (Baio, 2014; Cubala-Kucharska, 2010; Salazar et al., 2015; Simonoff et al., 2008).

Care coordination for students with ASD has been established as best practice (Volkmar et al., 2014) and includes communication (i.e., sharing of student assessment or treatment information with another professional) and collaboration (i.e., two or more professionals working together to plan and problem-solve to promote positive outcomes; Shahidullah et al., 2019). Benefits of care coordination for families of children with ASD include more effective communication, a reduction in stressors for families, earlier diagnoses to permit timely intervention, and improved access to medical and behavioral health services (Gray et al., 2008; Kogan et al., 2008; Mandell et al., 2005; Shahidullah et al., 2018).

School Psychologists as Facilitators of Care Coordination

Ritzema et al. (2014) recommended that primary care clinicians and school psychologists function as a team, synchronizing their efforts by taking joint responsibility for the care of students with developmental disabilities. Although there are many school personnel who may play a role in care coordination (e.g., school nurse), school psychologists are positioned to facilitate care coordination because they receive training in (a) child development, developmental disabilities, psychological assessment, academic, behavioral, and mental health interventions; (b) consultation, data-based decision making; and (c) partnering with families and other disciplines and systems.

The concept of care coordination assumes a central role within the National Association of School Psychologists’ (2010) Model for Comprehensive and Integrated School Psychological Services (NASP Practice Model). The model consists of 10 professional practice domains and seven organizational principles, many of which emphasize care coordination when delivering school psychology services. The first principle, Organization of Service Delivery, states that “services are coordinated and delivered in a comprehensive and seamless continuum that considers the needs of consumers and utilizes an evidence-based program evaluation model” (p. 9). The principle further states that (a) a range of services should be provided, (b) services should be coordinated with community providers, and (c) collective delivery of such services should be evaluated regularly.

Barriers Associated With Care Coordination

Despite the benefits of care coordination, only 44% of parents of children with ASD are satisfied with the communication that occurs between their primary care clinician and school (Cheak-Zamora & Farmer, 2015). Research regarding school psychologists’ engagement in care coordination is limited. A survey of school psychologists by Bradley-Klug et al. (2013) found that less than half of the respondents reported they collaborated with pediatric medical professionals. When contact with these professionals did occur, the main reason reported was to request or provide information about students (Arora et al., 2019; Bradley-Klug et al., 2013). A recent survey (McClain et al., 2019) of a national sample of school psychologists found that 67% of school psychologists engage in care coordination with professionals outside of the school system when providing services to students with ASD. Collaborations were most frequent with behavior therapists, speech-language pathologists, occupational/physical therapists, and clinical and counseling psychologists. However, in both the Bradley-Klug et al. (2013) and McClain et al. (2019) studies, several barriers (i.e., something that makes an action or process more difficult) were identified in care coordination. Respondents noted that limited time, limited knowledge of the education system and special education eligibility process, and difficulties sharing information (e.g., the Health Insurance Portability and Accountability Act [HIPAA] and other privacy protections) were barriers to collaborating with primary care clinicians and other non-school-based professionals.

From the perspective of medical settings, care coordination with a child’s school may be challenging for several reasons. In a recent survey of pediatricians, the majority of respondents (73.5%) viewed collaboration with schools as important or very important and believed it improved patient care (Shahidullah et al., 2019). However, many respondents believed that collaboration with schools was not feasible for most pediatricians. Barriers included limited time and scheduling challenges. These findings have been corroborated by other research highlighting additional barriers to collaboration with schools, including a failure to initiate discussions about students’ (a) medical care; (b) lack of training; (c) conflicts related to ethical, legal, and privacy issues; (d) inadequate financial and staffing resources; (e) blurring of professional boundaries; and (f) differences in system functioning (Carbone et al., 2010; Shah et al., 2013). Collectively, these barriers result in a fragmented system of service delivery that can be inefficient and ineffective.

Facilitators Associated With Care Coordination

Several facilitators (i.e., something that makes an action or process easier) to enhance the quality of care coordination have been identified. At the broadest level, facilitators include involving staff and team members who are adequately trained and knowledgeable and, with access to appropriate support and supervision, demonstrate buy-in for care coordination (Sloper, 2004). Other facilitators include the way in which team members collaborate with others (e.g., neuropsychologists and school psychologists sharing testing data). Families reportedly prefer an approach where team members across disciplines work collaboratively by sharing information, responsibility, and goals for care (Sloper, 2004; Watson et al., 2002).

A review of this literature suggests that the most significant facilitators include co-location of providers, the utilization of key-workers, cross-agency knowledge and appreciation, and strong communication and information sharing (Doyle, 2008). Key-workers are professionals who serve as a point person for families and lead care coordination efforts across team members. They may include care managers or early intervention coordinators who work closely with primary care practices (i.e., often referred to as family/patient navigators or care coordinators; Doyle, 2008). Strong leadership skills, clearly defined team member roles, frequent monitoring of student progress, and team member flexibility may contribute to the success of key-workers (Sloper, 2004).

Increased communication and information sharing also has been recommended in the literature. This may include holding regular team meetings, implementing an effective medium for communication including technological systems, and collectively agreeing on goals and objectives (Sloper, 2004). School psychologists have reported valuing shared decision making, establishing contact prior to collaboration, and increased knowledge of the educational system and special education eligibility process to be facilitators to care coordination (McClain et al., 2019).

Practice Considerations for School Psychologists

In presenting the following practice considerations, it is important to emphasize that (a) relationship-building must be a priority, with all providers focused on student outcomes, and (b) creativity is needed to explore innovative models of service delivery. Given that clear and universal practice parameters do not exist, which dictate when, where, and how care coordination should be conducted, the professionals who are most likely to be successful are those who can team with others to think “outside the box” when developing approaches to improving care coordination given the confines of current practice environments. The following strategies are largely based on a review of the literature, but aim to translate a given research finding to implementation in a real-world setting. See Table 1 for resources associated with each of these considerations.

Table 1.

Care Coordination Resources for School Psychologists.

Considerations	Relevant Resources
Understand and respond to families’ needs	Boston Medical Center for Family Navigation and Community Health Promotion: https://www.bmc.org/programs/center-family-navigation-and-community-health-promotion
Collaborate with primary care and community-based providers	For guidance on FERPA and HIPAA guidelines and how this may affect collaboration across education and medical settings: https://www2.ed.gov/policy/gen/guid/fpco/doc/ferpa-hipaa-guidance.pdf
Coordinate use of evidence-based practices (EBP)	NPDC-ASD EBP Modules: https://autismpdc.fpg.unc.edu/evidence-based-practices OCALI Autism Internet Modules: http://www.autisminternetmodules.org CSESA EBP Case Studies: http://csesa.fpg.unc.edu ECHO Autism Information: https://thompsoncenter.missouri.edu/autism-training/echo-autism/
Encourage training in care coordination	TEACH Teamwork: https://www.apa.org/education/k12/teach-teamwork

Note. FERPA = Family Educational Rights and Privacy Act; HIPAA = Health Insurance Portability and Accountability Act; NPDC-ASD = National Professional Development Center on Autism Spectrum Disorders; OCALI = Ohio Center for Autism and Low Incidence; CSESA = Center on Secondary Education for Students with Autism Spectrum Disorder; ECHO = Extension for Community Healthcare Outcomes.

Consideration 1: Understand and Respond to Families’ Needs

Objective 1: Target families’ priorities

School psychologists should regularly discuss intervention needs and goals with families of students with ASD through the use of a collaborative needs assessment. How the needs assessment is constructed will likely differ across schools, but content should include discussing family culture and values, determining family perceived intervention needs, and defining care coordination expectations and preferences. Directly inquiring about care coordination expectations and preferences is essential as some families may identify a professional interested in collaborating with the school or coordinating care, yet other families may wish to lead care coordination themselves. As part of this needs assessment, school psychologists should collect information about all the providers who engage in care for a particular student. From this list, parents should rate the top three providers who should engage in care coordination. This consideration is particularly critical for families from culturally and linguistically diverse backgrounds given the long-standing barriers to care experienced by this population (Amant et al., 2018). Furthermore, this process may address the unique health care perspectives among culturally and linguistically diverse families and avoid applying a “one-size-fits-all” approach to care coordination.

Objective 2: Facilitate families’ communication with providers

School psychologists should facilitate families’ communication with providers. This may be accomplished by providing parents with a summary of the findings presented at the Individualized Education Program (IEP) meeting to share with their primary care clinicians or community-based providers. In some circumstances, school psychologists may directly contact families’ providers to share relevant educational information, with appropriate consent. If caregivers opt out of providing written consent for information sharing between the school and medical settings, then school psychologists should ensure that caregivers have accurate and complete information they can share across settings.

School psychologists might use their training in motivational interviewing and collaborative decision making to assist families following special education eligibility determination. School psychologists may also consider assisting families in accessing parent support networks in the local area or online. School psychologists can ensure the family is aware of and connected to available community family navigation supports. These supports can help families overcome logistical hurdles to care such as access, transportation, language, and advocacy (Broder-Fingert et al., 2018). School psychologists may consider consulting or connecting families with school social workers given their expertise and training in service navigation. An eco-model of service delivery may be developed for all families that identifies all key providers and the extent of care coordination needed across systems. This would help families keep track of all the providers in their child’s care, as well as which providers are linked to whom.

Consideration 2: Collaborate With Primary Care and Community-Based Providers

Objective 1: Increase contact with providers

School psychologists should consider building collaborative relationships with medical providers in a variety of community settings, such as primary care offices and in specialty ASD clinics, in an effort to build a collaborative and communicative relationship that promotes care coordination. School psychologists may consider inviting outside providers to relevant trainings (offered by the district or by third parties such as universities or educational service centers) or relevant state conferences (e.g., school psychology state level professional organizations). Relevant community providers also can be invited to participate in pertinent meetings (e.g., IEP or behavior intervention plan review meetings) with appropriate caregiver consent. If in-person attendance is not feasible, then video-conferencing software may provide a viable alternative (e.g., HIPAA-compliant version of Zoom; see Consideration 3).

School psychologists should work with parents and clinic administrative staff to ensure that release-of-information forms are signed by all parties so that school staff may directly contact community providers and vice versa. This information may be included as part of the paperwork for all new students enrolling in schools, or as part of the paperwork for all new patients enrolling with providers. Having this information on file reduces the time and effort needed to obtain proper consents when care coordination is needed. In some instances, school psychologists may also involve relevant providers in psychoeducational evaluations in an effort to reduce over-testing for students and increase the evaluation quality by creating an interprofessional team across settings (i.e., see Objective 2). This may be particularly relevant for schools in more rural districts or with school-based professionals with limited experience with ASD assessment.

Following written release of information from parents/caregivers, school psychologists also may collaborate with medical professionals to determine how and what information will be shared across the school and medical/community-based settings. The beginning of the collaborative relationship should begin with a discussion of communication preferences and time to delineate team member roles and responsibilities. For example, the team might agree that the school psychologist will share graphs (e.g., student response to medication or other intervention plan) before upcoming meetings, to allow community providers to share their perspectives on care. The team might agree that brief phone calls are preferred for professionals to ask direct questions (e.g., school psychologist may ask a medical provider to clarify the impact that a specific medical issue has on learning or development).

Information sharing may be made more accessible through the collaborative development and use of an “Interprofessional Exchange of Communication Form.” Similar to a home–school communication log (that is used to exchange information between parents and teachers), this form would be designed to exchange information between providers. In addition, an organizational system (e.g., a secure content management and collaboration website such as Box.com) that is compliant with both HIPAA and the Family Educational rights and Privacy Act (FERPA), and that works for both systems of care to share information bidirectionally should be discussed and agreed upon. School psychologists and administrators need to review and be familiar with both FERPA and HIPAA to overcome barriers associated with navigating privacy laws. In many cases, consultation with the school district legal team to review forms or procedures may be advisable. School psychologist may also hold “office hours” or a dedicated hour block each week where community-based providers may contact them. This would eliminate the time and effort needed to schedule meetings.

Objective 2: Streamline evaluation processes

School psychologists can streamline evaluation processes and avoid unnecessary testing of students. This may be accomplished by collaborating with parents/caregivers and relevant outside providers to corroborate assessment batteries across settings (i.e., for evidence-based assessment practices in ASD, see Aiello et al., 2017). For example, school psychologists may retrieve available screening results (e.g., Modified Checklist for Autism in Toddlers–Revised [MCHAT-R], Screening Tool for Autism in Two-Year-Olds [STAT]) from primary care clinicians for early childhood students undergoing identification or transition evaluations. For older students, collaboration with ASD specialty clinics to obtain ASD-specific testing (e.g., Autism Diagnostic Observation Schedule–Second Edition [ADOS-2], Autism Diagnostic Interview–Revised [ADI-R]) may be beneficial, especially for students who have already received or are undergoing the medical diagnosis process. This reduces the likelihood of over-testing for students, workload for medical and school-based providers, and is useful for schools that may not have professionals who are trained in ASD assessment. School psychologists can synthesize multiple prior assessments performed by community-based providers and focus on how those results corroborate with school-based testing results. School psychologists should communicate with pertinent community providers, such as contacting the child’s medical providers, to collect information about medication (e.g., for progress monitoring purposes, evaluation of safety/side effects). Also, providing school-based testing results with outside providers may reduce their testing battery, which decreases the number of tests a student completes and may also increase access to services.

Consideration 3: Coordinate Use of Evidence-Based Practices

Objective 1: Be familiar with evidence-based practices

School psychologists must be familiar with evidence-based practices specific to ASD. School psychologists should consult with the many high-quality, freely accessible training materials. Specifically, the National Professional Development Center on Autism Spectrum Disorders (NPDC-ASD) offers online resources and self-paced modules that align with 27 established evidence-based practices. The Ohio Center for Autism and Low Incidence Disabilities (OCALI) offers Autism internet Modules. The Center on Secondary Education for Students with Autism Spectrum Disorder (CSESA) developed case studies related to EBPs (see Table 1).

Extension for Community Healthcare Outcomes (ECHO) Autism is a distance learning program for training primary care clinicians in best practices related to ASD (Mazurek et al., 2016). Although originally targeted to primary care clinicians, school psychologists may find the program beneficial, particularly those in rural areas or with limited access to ASD-specific training. Although there are several ECHO Autism communities, information on ECHO Autism broadly can be found in Table 1.

Once familiarity with EBPs is achieved, school psychologists should understand how EBPs may be applied in different settings. Coordinated use of EBPs outside of the school might include sharing examples of school-based EBPs with relevant community providers (e.g., behavioral therapist, clinical psychologist) who may adopt similar practices for their setting or offer suggestions for enhancement of EBPs in the school. School psychologists may facilitate application of EBPs in school- or community-based settings by sharing information on implementation strategies (Cook et al., 2019).

Objective 2: Embed collaboration in tiered service delivery

Collaboration might take place at any tier within a schools’ existing framework. School psychologists should become familiar with which practices may benefit students with ASD within tiers. At the universal level, basic exchange of communication with community providers to screen for potential mental health challenges can take place. Contact with medical providers at this stage may only be necessary a few times a year or on an as-needed basis (e.g., during annual screening periods). Alternatively, parents should be encouraged to share information acquired during annual wellness visits with their primary care clinician. At the targeted level, school psychologists can obtain the perspective of community providers about assessment practices or intervention approaches for students who have already been identified or at-risk for ASD. At the tertiary level, school psychologists can engage in collaborative problem solving with community providers about assessment and intervention. For these students, school psychologists may have infrequent contact with medical providers. For collaborations during the evaluation process, this may occur more frequently over a shorter period of time. Conversely, for students receiving interventions, collaboration with medical providers may be less frequent but over a longer period of time. The frequency and duration of collaboration between the school and medical providers should be based on student and family needs and preferences as well as professionals’ opinions. As mentioned earlier, a discussion with the student’s medical provider(s) that addresses this framework at the outset of the collaborative relationship is recommended.

Objective 3: Capitalize on telehealth

School psychologists may consider utilizing telehealth (i.e., delivery of health services through telecommunications and digital communication technology) for complex cases to facilitate care coordination across settings and providers. Telehealth initiatives may continue to increase in schools given that school telehealth can reduce access to care disparities, particularly in rural and underserved areas (Antezana et al., 2017). Initial studies have examined the effectiveness of telehealth in both assessment and treatment contexts. Diagnostic telehealth has been shown to be feasible and accurate with relatively high agreement across telehealth and in-person evaluation methods and providers, in addition to resulting in high family satisfaction (Juárez et al., 2018; Smith et al., 2017). Speech and language pathology telehealth assessment for students with ASD in Grades 9 to 12 was deemed to be a reliable and feasible approach in a recent study (Sutherland et al., 2019). Regarding treatment, the use of telehealth in parent-training and parent-implemented interventions for children with ASD has shown promise in terms of feasibility, participation rates, parent–child learning, and positive child outcomes (Bearss et al., 2018; Vismara et al., 2018). A review of telehealth studies implementing behavior analytic interventions found favorable outcomes, including 100% of studies (n = 28) that reported improvements in at least one outcome variable and 61% of studies that reported improvement in all measured outcome variables (Ferguson et al., 2019).

Consideration 4: Engage in Professional Development and Continuing Education

Objective 1: Pursue professional development and continuing education

School psychologists and trainees should self-assess their perceived preparedness and training for interprofessional education and collaboration. For sample interprofessional collaboration competencies, see Arora et al. (2019). School psychologists who desire additional training in this area should seek out training opportunities. Interdisciplinary leadership programs, such as the Leadership and Education in Neurodevelopmental Disabilities (LEND), hold promise in this regard. In LEND programs, school psychology trainees, along with trainees from other disciplines, can learn alongside families, community members, and a variety of relevant professionals for students with developmental disabilities (e.g., audiology, genetics, occupational therapy, developmental–behavioral pediatrics). Training in interprofessional education and collaborative practice is a larger initiative in health care that recognizes the importance of team-based care for service outcomes. The Interprofessional Education Collaborative (IPEC, 2016) has delineated four core competencies for providers to engage in interprofessional practice: (a) interprofessional teamwork and team-based practice, (b) interprofessional communication practices, (c) values/ethics for professional practice, and (d) roles and responsibilities for collaborative practice.

For example, TEACH (Teams and Teamwork, Communication, Mutual Support, Situation Monitoring, and Leadership) Teamwork (Benishek et al., 2016) is a program for school professionals that disseminates the science of team training to school-based teams. The program includes five self-guided modules grounded in the science of team training and adapted from evidence-based curriculum used in medical settings to enhance teamwork and collaboration.

Objective 2: Mentor trainees and fellow school psychologists in care coordination

School psychologists engaging or beginning to engage in care coordination can mentor trainees or early-career professionals through the use of an adapted individual development plan (IDP). An IDP may be used between mentors and mentees to establish goals related to care coordination and monitor the progress toward achieving those care coordination goals. School psychologists who have worked longer report more engagement in collaboration with outside providers (McClain et al., 2019). It is possible that more early-career experience with students with ASD, including more opportunities for trainees or early-career psychologists to establish relationships with outside providers, could promote more collaboration throughout school psychologists’ careers. Finally, graduate students with an interest in ASD are encouraged to seek out opportunities that involve collaboration within and across systems (e.g., observe behavioral therapy or complete a practicum that includes social and communication goals in a clinical setting and observe speech therapy in a school setting). In addition, internship training sites may consider adding a rotation on care coordination to ensure that trainees have real-world experience in coordinating care for students with ASD.

Conclusion

In presenting the practice considerations in this article, it is important to re-emphasize that (a) relationship-building must be a priority, with all providers focused on student outcomes, and (b) creativity is needed to explore innovative models of service delivery (e.g., telehealth). Aligned with school-based implementation strategies developed in the literature (Cook et al., 2019), one approach to initiating change may be to start small, such as identifying a single school to model proactive care coordination efforts. For large-scale implementation, school psychologists with grant writing skills might obtain funds for innovative community-linked care coordination initiatives, as well as funds to incentivize use of EBPs in schools and across providers. Incentivizing innovation for collaborative and proactive service delivery might help to address barriers experienced in largely fragmented and reactive systems. Evaluating student outcomes, as well as evaluating cost savings procured through proactive, coordinated early assessment and intervention, might facilitate additional system reform. Finally, additional advocacy work is needed at the state and regional levels to enhance the likelihood of fruitful partnerships between private and public systems of care.

A final obstacle to the future realization of improved care coordination might rest largely within individual school practitioners (Nastasi, 2000). Nastasi commented on the need for school psychologists to re-evaluate their professional identities and consider both capacity and motivation for acquiring a new identity as a “comprehensive health care provider,” in contrast to more antiquated and limited roles (e.g., diagnostician). Implications for the preparation of school psychologists include the need for school psychologists to receive training in pediatric psychology, community psychology, implementation science, and public health, as well as the aforementioned focus on action research methods and grantsmanship. Further discussion is needed to identify additional training needs, as well as to address additional barriers that limit care coordination for students with ASD and their families. Addressing such barriers and sharing models of successful care coordination can ultimately enhance receipt of family-centered care and improve student outcomes.

Footnotes

Ethical Approval

This study was not reviewed by the institutional review board (IRB) because it is a review paper.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Jeffrey D. Shahidullah

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