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American Journal of Speech-Language Pathology logoLink to American Journal of Speech-Language Pathology
. 2026 Jun 24;35(4):1411–1431. doi: 10.1044/2026_AJSLP-25-00501

Parent Support Group for Korean Immigrant Families of Individuals With Autism and Developmental Disabilities: Use of Academic–Community Partnership

HyeKyeung Seung a,✉, Jinsook Baek b, Adrian Jung c, Sung Hee Lee c, Teresa Girolamo d
PMCID: PMC13360599  PMID: 42340747

Abstract

Purpose:

Korean immigrant families face complex barriers to accessing services for their children with autism and developmental disabilities due to intersecting cultural, linguistic, and socioeconomic factors. However, there is limited information in the literature on strategies to close this gap. This tutorial reports on leveraging an academic–community partnership to establish and sustain a parent support group for Korean immigrant families of children with autism and other developmental disorders.

Method:

Academic and community partners worked together to develop family-centered support. The partnership focused on iteratively tailoring support to a localized context to increase knowledge, self-efficacy, and community support for navigating service systems. The development of the parent support group progressed through three phases: (a) establishing two separate support groups led by a parent and a faculty member, (b) merging the groups and building capacity to empower families, and (c) supporting community partners in formalizing the group and securing grant funding for partner-driven initiatives. In all phases, academic partners contributed university resources, whereas community partners provided insider knowledge to create effective programming.

Conclusions:

This approach has resulted in a strong, ongoing academic–community partnership that has lasted for more than 2 decades and successfully engaged over 400 families. The lessons learned offer an example of how to reduce barriers to autism-related services by leveraging community strengths and fostering collaboration and by revisiting both the partnership and supports for families to more strongly address community priorities.

Parent inclusion in their child's special education evaluation, educational planning, and educational decision making is a fundamental principle of the Individuals with Disabilities Education Act (IDEA, 2004). However, meaningful inclusion extends beyond attendance at meetings (Muller et al., 2009; Urkmez et al., 2023). For Korean immigrant and Korean American parents of children with autism, such inclusion often remains limited (Fong et al., 2022). This is a problem, as Koreans comprise one of the largest and fastest growing immigrant populations in the United States (I. Kim & Dababnah, 2022) and autism has a diagnosed prevalence of one in 18 in California (Shaw et al., 2025).

Parent support groups offer a promising avenue for empowering Korean American families in the United States by providing peer-to-peer guidance, information sharing, and strategies for navigating educational and service systems (Choe et al., 2024; Henderson et al., 2014). However, the effectiveness of parent support groups depends on the extent to which they match the background of each family in terms of cultural, linguistic, and immigration-related contexts. Korean families in the United States are not a monolithic group. Some are recent immigrants facing language and system navigation barriers, whereas others are second-generation immigrant families with differing levels of familiarity with U.S. special education systems. Here, “Korean immigrant” refers to families with direct immigration experiences, while “Korean American” encompasses a broader group of both families with direct immigrant experiences and United States–born families. This report focuses on the adaptation of support group content and delivery to address these varying contexts for Korean immigrant families.

Korean immigrant families face myriad barriers to advocacy and access within service systems. Following a social–ecological model, these barriers occur across multiple levels of the environment (Bronfenbrenner, 1977). For instance, parent–provider interactions shape the experiences of families with health care and education. Cascading outward, community access and institutional practices (e.g., the availability of culturally responsive resources in their home language) influence the ability of families to navigate service systems. In society, these environmental impacts are no less profound. Societal norms and corresponding service eligibility policies determine access to services and supports. For example, in the United States, societal norms previously did not see children with disabilities as deserving a free and appropriate public education; policy change emerged as a result of changes in societal norms, as opposed to change in children with disabilities themselves (Turnbull et al., 2010). Overall, these influences motivate attention to supporting families by optimizing person–environment fit (Lai et al., 2020).

Unfortunately, service providers may be underprepared to deliver culturally responsive services to multicultural families of children with autism, resulting in low quality of care and inaccurate clinical and educational decision making (Onovbiona et al., 2024; Weitlauf et al., 2024). To this end, Korean immigrant mothers of children with disabilities report encountering language-related and system-level barriers when seeking disability-related supports (J. Kim & Kim, 2017). Guided by a social–ecological framework (Bronfenbrenner, 1977) and aiming to optimize person–environment fit (Lai et al., 2020), this report describes the development of a support group for Korean immigrant parents of children with autism and other developmental disabilities in California. The focus of this report is on how academic–community partnership facilitated group development, with the tailoring of support strategies across environmental levels to meet the diverse needs of families.

Parent Support for Korean Immigrant Families of Children With Autism

While limited, prior research highlights the importance of tailoring support groups in reducing barriers to service delivery for East Asian families—including Korean families—of children with autism (I. Kim et al., 2021). Cultural factors such as respect for authority figures, familial hierarchy, and disability-related stigma influence how Korean American families engage with service systems (Kang-Yi et al., 2018). For example, in Korean culture, teachers and health professionals are viewed as authority figures; consequently, parents may not ask questions or advocate for their children if they feel that doing so would contradict professional guidance (Fong et al., 2022; I. Kim et al., 2021; S. A. Kim, 2023; Seung, 2013). In turn, providers may lack the cultural and linguistic humility required to effectively communicate with Korean American families (Khalil et al., 2025; H. Kim et al., 2024; I. Kim et al., 2022). However, tailoring supports for Korean immigrant families rather than East Asian, Korean, or Korean American families more broadly requires additional consideration.

Like other immigrant communities—which often have reduced sociocultural capital needed to navigate service systems (Bernstein et al., 2011)—Korean immigrant families vary widely in their backgrounds. Contextual factors, such as length of time in the United States, immigration status, socioeconomic status, and exposure to discrimination, each influence eligibility for services and supports, such as health insurance and public benefits (Oh & Jeong, 2017). Social networks, including extended family and ethnic community connections, and intergenerational communication within families, particularly in the context of parent–children acculturation gaps, can impact how families navigate service systems (Jeong et al., 2022; Lee & Park, 2016).

Korean immigrant families of children with autism report that community-based networks are an important source of culturally responsive support in their heritage language, particularly as they navigate special education systems (Choe et al., 2024; K.-H. Kim et al., 2007). However, prior studies have documented barriers and underlined a need to identify solutions to removing barriers that leverage community strengths (Choe et al., 2024; Stahmer et al., 2019). This tutorial focuses on lessons learned from Korean immigrant parents who have actively addressed these challenges, translating their experiences into meaningful programs to meet community needs.

Beyond parent support groups, academic–community partnerships may also help reduce barriers to service delivery. In the case of Korean immigrant families, academic–community collaborations provide unique opportunities to support communities in navigating service systems (Tyler & Whitmore, 2020). Universities can play a central role in facilitating these partnerships by conducting research that addresses community needs with community members as full partners, while also providing needed resources to those community members. This tutorial chronicles the development of a parent support group over 2 decades. This initiative emerged from a recognized need to support local Korean immigrant families of children with autism and developmental disabilities in navigating clinical and educational services. By sharing the lessons learned, this work aims to provide a model for leveraging academic–community partnerships to empower families and reduce service barriers.

An Overview of the Korean Parent Support Group

The Korean parent support group has evolved significantly from its inception in 2003 to the present day (see Figure 1). This evolution occurred in three phases.

Figure 1.

This diagram illustrates three sequential phases of a parent support group. The first phase, labeled Phase 1 in an orange box, includes two distinct entities: Group 1 and Group 2, listed within a white box with an orange outline. An orange arrow points to the next stage. The second phase, labeled Phase 2 in a green box, combines these into Group 1 + 2, listed within a white box with a green outline. A green arrow then leads to the final stage. The third phase, labeled Phase 3 in a blue box, focuses on BBT, which stands for Being Built Together, listed within a white box with a blue outline.

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Three phases of parent support group. BBT = Being Built Together.

In Phase I, a mother of a child with autism (the second author of this report) and a university faculty member (the first authors of this report) established two independent parent support groups to share autism-related information and resources. In Phase II, the two groups merged into a single unified group, supported by an academic–community partnership. In Phase III, the groups formalized its work by establishing a nonprofit organization.

Phase I (2003–2012): Establishing Parent Support Groups

There were two support groups for parents whose children received a diagnosis of autism or other developmental disorders, such as Down syndrome, in Southern California. One group was established by a mother of a child with autism (i.e., Group 1). A faculty member in Communication Sciences and Disorders established a separate group (i.e., Group 2). At the time of inception, each group did not know about the other group (see Table 1 for a summary of activities for each group).

Table 1.

A summary of parent Groups 1 and 2 in Phase I (2003–2012).

Variable Group 1 Group 2
Meeting hosts A mother (2nd author) A faculty in Communication Sciences and Disorders (1st author)
Meeting contents

  • Information and resource sharing for available services, service providers, IEP-related information

  • Exchanging parents' feelings and challenges in caring for their children with autism

  • Lectures on autism diagnosis, evidence-based interventions

  • Presentation on speech-language disorders

  • Review of diagnostic report

  • Parents sharing their experiences/challenges in handling problem behaviors, IEP meetings, denial of the autism diagnosis by some family members

  • Reviewing short video clips taken by parents at their homes
Challenges

  • Difficulty finding expert professional speakers

  • Difference in selecting common topics due to differences in children's age and support needs

  • Lack of funding to pay for meeting space, speaker fees, snacks

  • Reminding parents of the meeting

  • Promoting Korean community's voice out to agencies and service providers

  • Lack of staff support

  • Wide range of children's ages and level of support needs

  • Implementing interventions that were not supported by evidence such as gluten- and casein-free diet, chelation, and hyperbaric oxygen therapy

  • Implementing interventions shared by other parents without careful consideration for their child's needs

  • Unpredictable number of attendees due to inconsistent RSVPs
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Note.  IEP = Individualized Education Plan.

Group 1: Parent-to-Parent Support

The founder of Group 1 is a mother whose son received several diagnoses (developmental language delay, learning disability, autism) from the time he moved from Korea to the northeast United States at the age of 7 years, nearly 3 decades ago. When the father had a job transfer, the family moved to California. Several years later in 2003, the mother started a parent support group with five other Korean immigrant mothers of children who had received diagnoses of autism and intellectual disability. From 2003 to 2006, she hosted monthly parent support group meetings in her home. By 2006, the size of the parent support group had significantly grown; as a result, the meeting location moved to a public library.

Initially, the mother started this support group to share with other parents what she had learned from navigating the special education system in the United States for her son and to provide support as a parent ally. The objective of the monthly parent support meetings was twofold: to share resources and information regarding autism spectrum disorder and to provide a safe space for parents to share their feelings about caring for children with autism. At the same time that the mother hosted monthly support group meetings, she also served as a Korean-speaking volunteer for families who received services via the Regional Center of Orange County (RCOC), one of the state-funded agencies that provide services to people with developmental disabilities. Regional centers (https://www.rcocdd.com/client-services/services-provided/) are located across California. Initially, she provided one-on-one support to Korean families who sought services, programs, and information within Orange County. However, as a result of community need, the mother eventually extended her support to also include the Los Angeles and San Diego regions. She also attended seminars, workshops, and conferences (e.g., CalTASH) to learn from experts in special education and to share this information with parents.

While hosting monthly support group meetings, the mother experienced the following challenges: (a) selecting common topics each month for parents whose children with autism varied in age and needed different support levels, (b) finding expert speakers for the monthly meetings, (c) securing funding for meeting snacks and sometimes paying for speakers, (d) managing workload with no support staff, (e) encouraging and reminding parents to attend the meetings, and (f) amplifying the Korean community's voice to the RCOC and other service providers, such as applied behavior analysis (ABA) therapists, social workers, and speech-language therapists.

Group 2: Faculty-to-Parent Support

Unaware of Group 1, a faculty member in Communication Sciences and Disorders at a university (i.e., the first author) started Group 2 in 2007. The faculty member immigrated from Korea to the United States in the late 1980s as a doctoral student. She started this support group after she had to exclude a Korean child participant from her research because the child did not meet the inclusion criteria for language. In interacting with the parent, the first author learned that there was an interest in having a parent support group in the community. Thus, the first author began hosting monthly meetings in a conference room on campus on Saturday mornings. As in Group 1, most parents were first-generation immigrants and spoke in Korean during the meetings, which allowed parents to bond. This initiative was not a research project; rather, Group 2 started as a community-led family support group with community programming and activities. The focus was on partnership to support families (including those who sought out research study participation in order to access information and resources for their children) rather than any research.

Unlike Group 1, where information was shared from parent to parent, Group 2 activities consisted of expert support, including lectures on evidence-based interventions, general consultation regarding parent questions and challenges, and discussion using recorded video samples from home. In response to community priorities, the faculty member provided lectures and workshops on: (a) autism diagnosis and evidence-based interventions, (b) interpretation and review of speech-language diagnostic reports, and (c) reviews of developmental language disorders (e.g., speech sound disorders, apraxia of speech, receptive/expressive language disorders). Across all activities, the faculty member explained jargon used by speech-language pathologists (SLPs) because parents reported that such terminology was inaccessible. For example, in reviewing a sample speech-language diagnostic report from a parent, the faculty member explained the meaning of terms such as “expressive/receptive language” and how to interpret standard test scores. Other jargon that commonly needed explanation included the terms “apraxia of speech,” “articulation disorder,” and “intelligibility.”

Group 2 parents also engaged in structured activities that fostered shared learning. One activity asked parents to bring 1- to 2-min video recordings of their children with ASD interacting with siblings and/or other family members at home. While parents watched the recordings, they identified moments in the interactions that facilitated social interaction well. Such opportunities provided parents with culturally and linguistically responsive feedback that affirmed the strengths of their parenting styles and family interactions. More broadly, this activity affirmed the value of “insider knowledge” in understanding how to support community members. As a result, parents also began providing suggestions to other parents on how to change interactions to promote social engagement. In effect, this activity created a shared learning community, promoted meeting attendees' active participation, and increased opportunities for parents to build capacity with one another.

Parents also used the monthly meetings to share their experiences with common challenges, such as managing challenging behaviors. Most of their children received ABA therapy as a primary source to manage challenging behaviors at home. In California, regional centers and insurance providers commonly supported or provided ABA therapy to children with an autism diagnosis (Granpeesheh et al., 2009). Under such conditions, parents often perceived ABA as helping their children acquire speech-language skills, because ABA therapists spent much more time with their children each week than did SLPs (i.e., 10–40 hr vs. 30 min to 2 hr); parents thus perceived ABA as the most effective support for their children. During the monthly Group 2 meetings, parents shared these perceptions about ABA therapy, experiences with challenging behaviors, and exchanged tips for managing challenging behaviors.

In hosting the Group 2 meetings, the faculty member experienced recurring challenges. First, children's chronological ages and level of support needs varied widely, such that there was no single best approach to providing family programming. Second, parents wanted to try interventions that were not evidence-based (e.g., chelation, hyperbaric oxygen therapy, gluten- and casein-free diet intervention), and when the parents knew that the faculty member would not endorse those interventions, parents did not share that they tried them (Wong et al., 2015). Relatedly, parents implemented interventions that worked for other children without a clear rationale that the intervention would work for their child. Additionally, the number of attendees at monthly meetings was unpredictable. Although RSVPs are uncommon in Korean culture, requests for RSVPs were sent out in Korean with the assistance of student volunteers. However, most of the parents did not respond. The faculty member later learned that parents could not predict their schedule on Saturdays due to the needs of their other children and family members; moreover, some of the children with autism had appointments for speech-language therapy, occupational therapy (OT), or ABA on Saturdays. A final challenge occurred when a mother of a child with minimal support needs shared her challenge of helping her child with social skills; other mothers whose children were minimally to nonverbal felt discomfort in comparing their child with the child who was verbal and needed mild support for social skills.

Phase II (2012–2020): Building Capacity Together

The decision to merge the two groups into one group occurred when the faculty member leading Group 2 planned a sabbatical leave in 2012. During Phase I, the faculty member and the mother leading Group 1 occasionally attended each other's monthly meetings upon learning about the other support group. As the sabbatical leave involved conducting autism screening research in Korea, the faculty member leading Group 2 needed a plan to maintain the monthly parent support group meetings during her absence. Consequently, the faculty member and the mother collaboratively agreed to combine the two groups in 2012, giving rise to Phase II. During the faculty member's sabbatical, the mother ran the combined group monthly meetings. Upon return from sabbatical in 2013, the faculty member and the mother continued hosting monthly meetings as one combined group and planned the meetings collaboratively. These Phase II meetings primarily consisted of inviting professionals in the Korean American community—including psychiatrists, ABA therapists, and regional center staff—to share their expertise by giving presentations (see Table 1 for a summary of Groups 1 and 2 activities in Phase I).

Of note, upon the faculty member's return, the group celebrated the 10th anniversary of Group 1 by organizing a community conference entitled “Siblings: Another Life Partner.” The group leaders collaborated to plan the event. At the conference, Korean American community professionals—a psychologist, social worker, and attorney—served as facilitators of sessions focused on family dynamics and the experience of children living with siblings with developmental disabilities. Nearly 100 Korean Americans attended the conference, including 45 parents, 17 siblings, three presenters, and 17 staff members. Beyond attendance metrics, the event created a safe space for siblings to connect with others who shared similar experiences while engaging in moderated sessions on family dynamics and emotional impact, as well as on sharing personal experiences.

In 2015, the support group created subgroups in order to address the primary challenges from Phase I in each group: meeting the needs of children varying in chronological age and support needs. Subgroups were based on ages (e.g., preschool, elementary, middle, and high school, and adults), with additional groups focusing on college preparation and job training. Each subgroup elected parent leaders to empower them to co-construct the monthly meetings. These leaders played an active role in facilitating group activities, obtaining resources, and mentoring incoming leaders. Preschool and elementary group leaders typically served for more than 1 year, while high school group leaders served on an annual (1 year) basis. Outgoing leaders trained the new leaders, providing peer-to-peer mentoring on how to facilitate group activities and manage resources. Subgroup leaders sent messages about upcoming meetings, registered new members, and hosted discussions on message platforms familiar to both Koreans in Korea and Korean immigrants in the United States.

By the time the subgroups were formed, two faculty members in special education had joined the parent support group in order to help co-host subgroups alongside elected parent leaders. The faculty member in communication sciences and disorders co-hosted the preschool group, the faculty members in special education (the third and fourth authors of this report) co-hosted the elementary school and middle/high school groups, and the mother who founded Group 1 co-hosted the adult, college, and job training groups. Except for the preschool group, which continued meeting in a conference room on a university campus, monthly meetings took place at local churches.

By 2020, the total number of registered members had grown to approximately 200 parents. Although the pandemic temporarily paused meetings in 2020, the group transitioned to virtual meetings via Zoom in 2021, as parents became more comfortable with the platform.

Phase III (2020 to Present): Supporting Partner-Driven Initiatives

In 2020, the Group 1 founder and leader (i.e., the second author) applied to establish a nonprofit organization, Being Built Together (BBT), which is now a 501(c)(3) nonprofit charitable organization, built on 2 decades of collaboration among university faculty members, parent leaders, and parent participants focusing on supporting children with autism in California. The purpose of BBT was to broaden support for Korean-speaking individuals and families of children with intellectual and developmental disabilities beyond solely autism, as the need for culturally and linguistically sensitive supports was evident. The mission of BBT is to provide services that foster independence and community integration by ensuring families receive the education, information, resources, and guidance necessary to navigate complex service and health care systems. The second author was appointed as the executive director and founder of BBT. Subsequently, BBT appointed five board members, all of whom have children or a family member with autism or another developmental disability.

By achieving nonprofit status, the BBT executive director and board members were able to apply for grant funding through the California Department of Developmental Services (DDS). They received multiple Service Access and Equity grants that have enabled BBT to expand its reach in 2021–2022, 2022–2023, and 2024–2026. Specifically, BBT has used this funding to systematically disseminate information to expand family supports. To make critical information more readily accessible, BBT regularly shares information and resources via social media platforms. BBT also now offers 1:1 case management. Families receive individualized guidance from trained navigators, who are parent mentors who have children with disabilities and have extensive personal experience and knowledge. Lastly, BBT offers seminars, workshops, and conferences for parents to gain knowledge about public services, regional center services, and tools to support their children. This phase represents a significant milestone in the academic–community partnership, turning years of community-driven efforts into systematic supports for Korean immigrant families. While grants compensate BBT staff (Executive Director, Grant Manager, Accountant, Grant Specialist, Administrative Coordinator, Navigator), faculty members are not compensated. Donations supplement expenses not covered by grants. The following sections detail BBT programs.

Sharing Information and Resources

Social media has played a crucial role in sharing information about available services, upcoming workshops, and community events in real time. Information and resources are posted by the executive director to the BBT Facebook group and BBT Announcement Group on KakaoTalk (a popular Korean social media platform). In 2025, there are 554 registered members in the Kakao Talk BBT Announcement Group who receive upcoming workshop information and schedules. The KakaoTalk Information Exchange Group includes 492 members who post questions about Medi-Cal (California Medicaid) and referrals for service providers such as neurologist and dentist referrals, SLPs, occupational therapists, and ABA therapists. To ensure available services being accessible to the members, announcements in English are accompanied by a summary of the information in Korean. This allows families to engage with resources at their convenience, making support more accessible and efficient. Examples of the information and resources include topics such as Transition Planning: Creating a Life Full of Possibilities, Meet the State Council on Developmental Disabilities (SCDD) Orange County Office, and Think Outside of Box: A Step-by-Step Self Determination Program Training. Figure 2 shows an example post about parent training information, Think Outside the Box, in English, which is accompanied by a summary in Korean. This posting included key details (i.e., the topic, a brief description of the seminar, the date and time, and the Zoom registration link) to ensure accessibility for Korean-speaking families.

Figure 2.

The image displays a mobile phone screen showing a chat or announcement from \

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A sample of a Being Built Together (BBT) announcement in English and Korean. Texts are from Jinsook Baek.

1:1 Case Management Support

One of our most impactful programs is the 1:1 Case Management program. Navigators, who are parents of children with developmental disabilities, provide direct and personalized support to families. The process is outlined in Figure 3 and described below:

Figure 3.

The flowchart shows five steps. Step 1. Complete an intake form. Step 2. Brief interview with the program director. Step 3. Assign a navigator. Step 4. Family contact and provide service. Step 5. Post survey.

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Procedures of 1:1 case management support.

  1. Families fill out an intake form to request 1:1 case management (see Appendices A and B).

  2. After families submit the intake, the program director conducts a brief interview with the parents.

  3. BBT assigns a navigator to guide parents through special education–related services, and the navigator contacts the family to provide support. Currently, there are eight navigators who provide step-by-step guidance to assist parents in accessing services. For example, when a BBT navigator assists a family in applying for In-Home Supportive Services (IHSS), the navigator provides basic information about IHSS, guides the family through the application process, explains how to prepare for the initial interview, and assists with completing the necessary paperwork. If a child is experiencing behavioral issues at school, a BBT navigator may recommend that the parents request a Functional Behavior Assessment and assist the parents with filling out request forms. If a child has received autism diagnosis and the parents are unsure where to seek support, a BBT navigator reviews the child's assessment report and provides step-by-step guidance on how to apply for regional center services.

  4. After providing step-by-step assistance, a postsurvey is conducted to gather feedback to help improve our services (see Appendices C and D).

It is critical to note that 1:1 Case Management services do not end after just one or two interactions. After families apply for and receive services, follow-up support is available if parents have questions or need further assistance.

Shared Dissemination and Outreach

DDS funding has also enabled BBT to host seminars and workshops and share critical information with families. By equipping parents with relevant knowledge, the aim of disseminating information is to empower families to advocate effectively for their children. Sample topics of information disseminated include the following: (a) an overview of the special needs trust and CalABLE, a California state-sponsored savings and investment program for people with disabilities under the age of 26 years; (b) topics related to self-determination; (c) available services at the Department of Rehabilitation and Regional Center; (d) augmentative and alternative communication (AAC) and advancing parents' knowledge of AAC skills; (e) employment-related services; (f) housing options; (g) medications; (h) in-home support services; (i) epilepsy; (j) recommended e-books; (k) sensory integration; (l) mental health–related topics; (m) Supplemental Security Income and Social Security Disability Income; and (n) conservatorship.

Other BBT Programs

Beyond case management, seminars, and workshops—which are all funded by the DDS—BBT offers a variety of other programming. These additional programs, funded by donations and an Open Stewardship Foundation grant, extend the reach of BBT.

Parent Training

Annually from 2021 until 2024, we offered a basic online study group for Autism Distance Education Parent Training (ADEPT) with a facilitator. The ADEPT Program (https://health.ucdavis.edu/mind-institute/centers/cedd/adept) was created by the MIND Institute at the University of California, Davis, and is a self-paced, interactive, online learning program designed for parents of children with autism and other neurodevelopmental disabilities. BBT provides our ADEPT program training in Korean as the program is available in Korean, Chinese, and Vietnamese (https://health.ucdavis.edu/mind-institute/centers/cedd/adept). This program consists of two instructional modules, each containing 10 classes, that teach parents how to effectively use ABA techniques to support their child's skill development, and each module includes videos, exercises, and quizzes. Although this format allows parents to learn at their own pace while gaining practical strategies to improve their child's communication, behavior, and daily life skills, many parents struggle to complete the program on their own. Therefore, BBT offers a structured ADEPT Parent Group Study Program in Korean to support families successfully completing the training. BBT creates an online study group where parents can support and encourage each other to stay engaged and complete the training. The group meets once a week for 2 hr per session, over a total of 20 weeks per year. Sessions are held via Zoom, which provides a space to review course materials, discuss key concepts, share experiences, and ask questions. Each session is led by a facilitator who guides discussions and helps parents apply their knowledge to real-life situations. This study approach fosters a collaborative and motivating learning environment, making it easier for parents to stay committed and benefit fully from the ADEPT training. By participating in the BBT ADEPT Parent Group Study Program, parents gain valuable skills, peer support, and shared learning experience, empowering them to better support their children with autism and other neurodevelopmental disabilities.

Starting in 2025, BBT began offering an intermediate ADEPT program with a Korean-speaking board-certified behavior analyst, designed to provide an in-depth exploration of each class within the ADEPT framework. This program is intended for those who have completed the ADEPT basic course, allowing them to take the next step and gain a more comprehensive understanding of ABA techniques.

Self-Determination Program

The Self-Determination Program (SDP) is a new program offered by regional centers. SDP allows regional center consumers to have greater control over their services and build a customized circle of support that best fits their needs and future goals. Transitioning from traditional services to SDP can be challenging, and designing a personalized plan is complex, but SDP is an incredibly valuable and empowering program. Therefore, to support this process, BBT provides consultations to help families design their own creative SDP.

Language Access and Cultural Competency Initiatives

Through our partnership with the RCOC, we collaborate in translating resource materials into Korean. RCOC provides BBT with Korean translations of materials prepared by their vendors. We then review and refine these materials to ensure cultural and linguistic accuracy. Once finalized, we return the revised materials—such as information, resources, flyers, and newsletters—to RCOC, which then distributes the collaboratively finalized materials to Korean-speaking families via e-mail or in print. This partnership with the RCOC ensures that Korean-speaking families receive culturally and linguistically appropriate disability-related materials. Our goal is to help these families clearly understand information, resources, services, and programs so that they can effectively advocate for their children and access the support they need.

Advocacy

In order to amplify our voice in the broader American community, BBT is collaborating with community-based nonprofit organizations, such as Disability Voices United, Autism Society Los Angeles, and The ARC. Moreover, to further share information about BBT programming, BBT is developing a website (https://www.bbtus.org/) with registration materials for parents (see Figure 4).

Figure 4.

The image displays a digital registration form with a yellow header and a dark gray form body. In the top left corner, the number 4 is positioned next to a logo that reads \

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A sample of a Being Built Together (BBT) parent registration form.

Extension of the Partnership: The Arts

In 2022, BBT expanded its university–community partnership to two faculty members at the University of California, Irvine, by collaborating on drama projects with Korean American youth with autism. Two faculty members from the Department of East Asian Studies and the Department of Drama worked with BBT and 16 Korean American youth with autism to put on the plays Lost Cat Found in 2022 and Wreckage of the Seas in 2023. The faculty member from the Drama department incorporated movement therapy methods that included dance, yoga, tai chi, and other types of exercise that could be adapted to individuals with a range of physical and sensory profiles (Takahashi et al., 2019). Initially, the faculty member introduced various movements to participating individuals, followed by gradually introducing a play script. Additionally, faculty members supported directing the play and choreography. Importantly, these drama projects required extensive time and effort. Autistic individuals rehearsed 2 hr weekly for 4 months before performing the play in 2023 at a local church. Eleven high school and college students volunteered during rehearsals and on the day of the performance.

These drama projects, developed and conducted with BBT, represent the core values of BBT, which are to empower individuals and create a community where everyone belongs. These plays served as opportunities for all to engage in a way that suited their talents, interests, and access needs as related to their disability. Activities were tailored to the strengths of each participant. For example, an individual who used language to communicate might select a role with spoken lines, while an individual who was shy or used other modalities might select a role that that prioritized movements (e.g., dance) over spoken language. While high school and college student volunteers were eager to support inclusion, they did not always know how to support participants during instances of crying, screaming, or anxiety about a new place and people due to limited awareness and understanding of autism and disabilities. Consequently, BBT provided training to personnel, such as knowing how to communicate with Korean American youth with different communication profiles and access needs. Building on this experience, BBT now provides regular disability awareness training to volunteers to help them better understand the participants and equip them with the skills to support and interact with them. Because of the active partnership with BBT and the broader Korean American community, the drama project evolved into a powerful tool for self-expression and social integration. Rather than expecting youth with autism to “fit in,” tailoring programming provided a pathway for all to engage in the arts and learn from one another. The structure of the drama projects, combining movement therapy, a script, and multiple options for engagement, serves to enhance confidence, self-expression, and social skills. Each year, the project concludes with a live stage performance. The stage is an inclusive space, where individuals can express themselves through multiple modalities, ways, and roles that are purposefully designed and equally valued.

Lessons Learned

In this section, we share five major lessons learned over the past 2 decades, from 2003, when the first parent group was established, up to now, with the establishment of our nonprofit organization, BBT. The first four lessons present ideas related to organizational structure, while the fifth lesson highlights the major topics that parents found most beneficial.

First, we learned the importance of intentionally providing dedicated spaces and time for Korean parents who raise children with autism and other developmental disorders. As Kerr and McIntosh (2000) reported, our “parent-to-parent” support provides a safe space for the parents to share and compare their experiences with other parents. It has been instrumental for the parents to use their heritage language to share their lived experiences with other parents who might experience similar challenges (Lim et al., 2021). At times, parents are flooded with anxiety, anger, and frustration while interacting with their autistic children, service providers (e.g., SLPs, OTs, ABAs), and family members (Bitsika & Sharpley, 2004). Knowing that they are not alone and that there are other parents like them reduces stress for the parents. Parents are uniquely qualified to help each other with practical advice about the problems they experience daily. The parent support group has therefore served as their outlet to share their emotions with others who listen and fully understand their experiences (Jackson et al., 2018).

Second, subgrouping the monthly meetings by children's age facilitated the meeting discussions to be more focused on age-related topics of concern (Mire et al., 2015). With this subgrouping, elected parent leaders within each age group enhanced their participation, as this role required active engagement, such as scheduling meetings, communicating with members, and welcoming new families. Most parent leaders shared that serving in this capacity was a positive experience, giving them greater confidence in their knowledge of how to provide appropriate services for their children with disabilities.

Third, interdisciplinary collaboration is the key to the continued success of community–university partnerships. Three faculty members shared their knowledge with the community members and achieved an interdisciplinary collaboration between the departments they represented (Communication Sciences and Disorders and Special Education). The academic–community partnership described in this tutorial focused on service, with this collaboration driven by the faculty members' commitment to partnership rather than research. Over time, the cumulative efforts of this partnership have led to capacity building, enabling the development of research projects.

Fourth, the partnership between the faculty members and parents helped parents better understand their autistic children's characteristics. By understanding their children's communication difficulties, challenging behaviors, triggers, and sensory needs, parents were able to identify their autistic children's strengths, rather than their weaknesses (Cosden et al., 2006). It helped the parents shift their focus from “cannot do” to “can do,” which then facilitated the parents to advocate for a strength-based approach (Choe et al., 2024; see Figure 5).

Figure 5.

The image displays a circular diagram on a white background, illustrating a continuous process. In the center of the circle, the text Understand & Advocate is prominently displayed. Three key components are arranged around the circle, connected by arrows that form a clockwise cycle. Starting from the top right, the first component states, Better understanding of the needs and characteristics of their children and their disabilities. Following the cycle clockwise, the next component at the bottom reads, Focus on the strength of individual child. Continuing clockwise, the third component on the left side says, Advocate strengths and future planning. The arrows and segments of the circle are depicted in varying shades of green, indicating a dynamic and interconnected process.

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Model of a strength-based approach.

Fifth, parents identified a number of topics or components as being helpful or necessary. These topics included Individualized Education Plan components and requirements, special education eligibility, reviewing a sample diagnostic report, behavioral support strategies, basic special education terminology, special education due process, social security benefits, and mental health support for parents. These topics were thoughtfully selected based on informal discussions to address parents' authentic needs as they navigate the system for accessing special education services, including those provided by SLPs.

Conclusions

This partnership demonstrated how to empower Korean immigrant parents of children with autism and developmental disabilities by creating a parent support group that removes cultural and linguistic barriers. This approach serves to improve the quality of the environment that shapes family interactions with service providers, community access, and service systems. Critically, building and sustaining partnerships over multiple decades provided a strong foundation for iteratively developing programming that successfully engaged families.

Establishing subgroups in direct responses to family needs, rather than deciding a priori what programming to provide without collaboration, facilitated tailoring programming for monthly meetings. In particular, this partnership helped create a safe space for families to feel “seen” and valued, as well as to support sustained participation; most importantly, this partnership allowed people from the community to lead and shape the work.

The establishment and growth of our academic–community partnership and parent support group provides an example of a collaboration model among SLPs, special educators, and parents. Academic partners benefited by being able to link the lived experiences of youth and families to their teaching. Additionally, although this was not an objective of the partnership, BBT is able to assist with research participant recruitment when faculty members conduct community-based participatory research (William et al., 2025). The partnership has provided a strong basis, with trust and support, for a few student-led research projects (e.g., dissertations, honors projects) as well. Families choose how and when to partner on projects voluntarily. Moreover, the faculty collaboration can involve student volunteers, and faculty can mentor these student volunteers in their future career planning (see Figure 6 for a visualization of the bidirectional influences among faculty, BBT family, and student trainees). It is our hope that this partnership serves as an example for other communities within the United States and beyond.

Figure 6.

A diagram depicting a model of community-university collaboration benefits, enclosed within a large light green circle. Three dark blue rectangular boxes are arranged in a triangular layout. The top box is labeled Faculty Members at University. The bottom left box is labeled Educating Students\/Future Professionals. The bottom right box is labeled BBT Family Members. Each of these three boxes is connected to the other two by a double-headed gray arrow, illustrating mutual interaction and benefits among the faculty, students, and BBT family members. The acronym BBT stands for Being Built Together.

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A model of community–university collaboration benefits. BBT = Being Built Together.

Author Contributions

HyeKyeung Seung: Conceptualization, Project administration, Writing – original draft. Jinsook Baek: Data curation, Project administration, Writing – review & editing. Adrian Jung: Conceptualization, Writing – review & editing. Sung Hee Lee: Conceptualization, Visualization, Writing – review & editing. Teresa Girolamo: Writing – review & editing.

Data Availability Statement

Data sharing is not applicable to this tutorial as no data sets were generated or analyzed in the current manuscript.

Acknowledgments

This study was supported by National Institute on Deafness and Other Communication Disorders Grant R21 DC021769 (principal investigator [PI]: Girolamo); Department of Developmental Services Grants 21-C23, 22-C23, and 23-C23 (PI: Jinsook Baek); and 2024 Open Stewardship Foundation grant (PI: Jinsook Baek).

Appendix A

Parents Complete the Intake Form to Receive the BBT Community Connector Service (English and Korean)

The image shows the first page of the 2025 BBT Community Connector Service - Intake Form. The logo at the top left indicates that BBT stands for Being Built Together. The statement below the heading indicates that the survey takes approximately 7 minutes to complete. Instructions regarding community connector service, intake forms, and DOS are provided in the Korean language. The name of the client including the legal name is to be entered at the bottom of the form. Korean language translations are provided below the name of the client and the legal name. In the survey, a red asterisk indicates Required fields. The second page of the form asks for the date of birth, name of parent(s)/caregiver(s), phone number, and email address. It includes instructions in Korean and examples for each field. The third page of the form asks information corresponding to the primary reason for referral, today's date, and whether the child is a Regional Center consumer. Korean language translations are provided below each English language statement.

Appendix B

Parents Complete the Survey After Receiving the Being Built Together Community Connector Service (Korean)

The image shows the first page of the 2025 BBT Community Connector Service Post-Survey & Testimonial form. The required fields are marked with an asterisk. The form collects the Name of Client and a question about BBT Navigator services. The second page of the form asks about satisfaction with BBT service and knowledge of who to contact with concerns, with multiple-choice answers for each question. The image shows a form with two multiple-choice questions in Korean. The questions ask about beliefs and experiences related to family and accessing services. Radio buttons are available for each answer choice. The image displays three multiple choice questions about feeling a sense of community with other parents of children with developmental disabilities, a testimonial section, and a field to enter the date the post-survey was completed.

Appendix C

Parents Complete the Survey After Receiving the Being Built Together Community Connector Service (English)

A document titled 2026 BBT Community Connector Services Post-Service Survey and Testimonial. At the top left is the Being Built Together logo, featuring a colorful star-like shape made of overlapping figures. Below the title, a note states: This form is to be completed after receiving services from Being Built Together left parenthesis BBT right parenthesis. The survey contains four numbered sections. Section one asks for the Name of Client, with instructions to enter the legal name of the individual who received services, specifically the child's legal name, not the parent's name. Section two asks: What type of services or support did you receive from your BBT Navigator? with a prompt to describe the services received. Section three asks: After receiving services from BBT, please indicate your current status. Did the information or support provided by BBT help you better understand your child's disability and needs? This is followed by three checkbox options: Yes, it was helpful; Somewhat helpful; and Not helpful. Section four states: I know who to contact and what steps to take when I have questions or concerns about Regional Center services. This is followed by five checkbox options: Strongly agree, Agree, Not sure, Disagree, and Strongly disagree. A survey document containing questions five through nine. Question five asks, I feel confident that I can create positive change for my family. Options are bulleted with checkboxes for Strongly agree, Agree, Not sure, Disagree, and Strongly disagree. Question six asks, How easy or difficult is it to obtain the services your child needs through the Regional Center? Options are bulleted with checkboxes for Very difficult, Difficult, Neutral, Easy, and Very easy. Question seven asks, I feel connected to other parents who have children with developmental disabilities. Options are bulleted with checkboxes for Strongly agree, Agree, Not sure, Disagree, and Strongly disagree. Section eight is titled Testimonial open parenthesis Feedback on Services close parenthesis. It asks the respondent to share feedback about their experience with BBT services, including how they were helpful, noting that feedback assists in improving services and responses may be in English or Korean. Question nine asks for the Date this Post-Survey was completed, providing an example format of zero one forward slash zero one forward slash twenty twenty-six.

Funding Statement

This study was supported by National Institute on Deafness and Other Communication Disorders Grant R21 DC021769 (principal investigator [PI]: Girolamo); Department of Developmental Services Grants 21-C23, 22-C23, and 23-C23 (PI: Jinsook Baek); and 2024 Open Stewardship Foundation grant (PI: Jinsook Baek).

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

Data sharing is not applicable to this tutorial as no data sets were generated or analyzed in the current manuscript.

Articles from American Journal of Speech-Language Pathology are provided here courtesy of American Speech-Language-Hearing Association

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