Working with Adults with Intellectual Disability and Clinicians to Advance Mental Health Treatment: Informing Practice Guidelines and Research

ABSTRACT

Introduction

The current study obtained perspectives on psychotherapy practices from adults with intellectual disability receiving psychotherapy and mental health clinicians serving adults with intellectual disability. The goal was to identify opportunities, successes, and challenges through the perspective of adults with intellectual disability who have received mental health treatment (i.e. clients) and clinicians providing psychotherapy.

Method

A total of six virtual focus groups, three with clinicians and three with clients with intellectual disability who had experience with psychotherapy, were conducted. Transcripts were coded by two independent reviewers guided by grounded theory.

Results

Broadly, analyses indicated overlapping themes with rich perspectives from both groups. Both clinicians and clients with intellectual disability identified a number of key aspects that were perceived as foundational to therapy and to improving the therapeutic relationship and comfort of the client with intellectual disability. Themes related to rapport building and self-determination emerged, despite not being directly asked of either group. Both clinicians and clients with intellectual disability discussed the therapeutic process at length, related to general types of treatment modality as well as the importance of individualizing treatment strategies. Clinicians spoke of regularly making accommodations to increase treatment accessibility.

Conclusion

The focus group results align with and supplement treatment outcome research and have implications for training, practice, and future research.

KEYWORDS:

• Psychotherapy
• Intellectual disability
• Focus group
• Grounded theory

INTRODUCTION

Adults with intellectual disability are more likely than people without disabilities to experience life events and circumstances associated with increased risk of mental health problems including stressful family experiences and situations, stigma, abuse, neglect, unemployment, lack of self-determination, and lack of supportive friendships (Honey, Emerson & Llewellynb 2011,; Gilmore & Cuskelly, 2014). This is reflected in the increased prevalence of mental health conditions in adults with intellectual disability as compared to adults without intellectual disability. While prevalence estimates vary widely (i.e., 30% and 50%; Mazza et al., 2020.), one study found that 26.6% of adults with intellectual disability, compared to 14.9% of adults without intellectual disability, had a mental health condition (Cooper et al., 2009). Most recently, a meta-analysis found a pooled prevalence estimate of 33.6% of people with an intellectual disability met criteria for a psychiatric disorder (Mazza et al., 2020).

There is a growing body of literature supporting the benefits of psychotherapy for adults with intellectual disability (e.g., Graser et al., 2022 Irvine & Beail, 2017; National Guideline Alliance (UK), 2016; Prout & Nowak-Drabik, 2003) and research on the treatment of mental health conditions in adults with intellectual disability has advanced over the last two decades. This has included randomized-controlled trials (Bouvet & Coulet, 2016; Cooney et al., 2017, Hassiotis et al., 2013; Jahoda et al., 2017; Karatzias et al., 2019), increased use of treatment manuals/protocols (Witwer et al., 2021), and the use of validated outcome measures specifically developed for adults with intellectual disability (e.g., Cuthill et al., 2003; Mindham & Espie, 2003).

This emerging body of evidence is key to informing future research and clinicians on evidence-based practices. The most researched treatment modality has been cognitive behavior therapy (Witwer et al., 2022). Strategies and approaches such as relaxation training (Thom et al., 2022) and mindfulness have also been researched and appear to have an emerging evidence base (Felver et al., 2022). Due to concerns about study rigor and/or the lack of replication, further research is needed to determine the relative efficacy of these and other treatments for specific mental health conditions in adults with intellectual disability (James, 2017; Witwer et al., 2021).

In addition to treatment modality, the available treatment outcome research common components, accommodations, and adaptations could be quite valuable to inform clinical practice and future research. Common aspects of accommodations to treatment in the literature include the modification of therapy structure, use of simplified terminology, visual supports, teaching prerequisite skills, and the involvement of caregivers (Hwang & Kearney, 2012; McNair et al., 2016; Witwer et al., 2022).

These treatment components align with previous recommendations by the British National Institute for Health and Care Excellence (NICE; National Guideline Alliance, 2016) which were based on a scoping review of assessment and treatment practices in individuals with intellectual disability. In the resulting publication it was noted that there was limited quality evidence from which to draw definitive conclusions and subsequent specific treatment guidelines but did outline general recommendations for clinicians. The expert group recommended the use of cognitive behavioral therapy (CBT) for treatment of depression, and the specific CBT techniques of relaxation therapy and graduated exposure for treatment of anxiety disorders. The following recommendations were made in regard to adapting psychological treatments for individuals with intellectual disability: 1) use specific mental health assessments to inform adaptations, 2) adapt treatment to the specific needs and preferences of the individual (e.g., adjust the frequency, length, number, and pace of sessions), 3) involve caregivers, 4) provide extra structured support to practice new skills between sessions (e.g., utilize caregivers), and 5) consider the individual’s communication needs throughout every phase of treatment (e.g., adapt treatment to the individual’s level of understanding, use the same words the individual uses, use clear and concrete language, and frequently check for understanding).

Taken together, previous research and expert opinion are coalescing around common concepts and guiding principles in psychotherapy research. This includes foundational concepts of therapy such as a.) assessment, b.) communication, and c.) accommodations/support within therapy; and those related to the therapeutic process which encompasses considerations for the structure of therapy such as a.) session structure (e.g., length, pace, number of sessions), b.) delivery modality (e.g., group versus individual, telehealth versus in person), as well as c.) the inclusion of support people.

The overall goal of the study was to use an inclusive approach to inform future psychotherapy research, practice guidelines, and training for clinicians. To do this, we obtained perspectives on current psychotherapy practices from adults with intellectual disability receiving psychotherapy and from mental health clinicians serving individuals with intellectual disability. The purpose of the focus groups was to identify, from the perspective of adults with intellectual disability and clinicians, what aspects of the psychotherapeutic process were perceived to be acceptable and beneficial. We were also interested in the benefits, barriers, and facilitators of psychotherapy from the perspective of adults with intellectual disability and clinicians. A clear understanding of the perspectives of adults with intellectual disability, as well as how their perspective aligns with current research and clinical practice can be used to guide future research, training, and the compilation of up-to-date practice guidelines for meeting the mental health needs of adults with intellectual disability in psychotherapy.

METHOD

Learning Collaborative

This work is part of a larger project addressing the health and function of adults with intellectual disability, The Ohio State University Nisonger RRTC on Health and Function. The Nisonger RRTC learning collaborative consists of fourteen study investigators, eight research experts on disability and health (the Research Experience Expert Panel; REEP), and fourteen community members with intellectual disability (the Disability Experience Expert Panel; DEEP). Learning collaborative members (REEP and DEEP) are paid consultants who contribute to the research process. The DEEP is co-chaired by two staff with intellectual disability and is a fundamental cornerstone of the project’s inclusive community engaged approach to research. DEEP co-chairs work with project staff to engage panel members through structured meetings and surveys that advance project needs and goals. Both REEP and DEEP members provided input on the design of this project. Specific activities will be noted below.

Focus Groups

Online focus groups through a teleconferencing system were conducted first with mental health clinicians who provide direct care to adults with intellectual disability (i.e., clinicians); and then with adults with intellectual disability (i.e., clients). Unique but complementary focus group guides were developed to facilitate a comparative assessment from the perspective of the clinicians and clients. An expert in qualitative research methods provided training for the facilitator and observers on effective administration of focus groups based on established methods (Krueger & Casey, 2009). This study was reviewed and approved by the Ohio State University Institutional Review Board (Approval # 2019B0337).

Focus Groups with Clinicians

Participants. Licensed mental health clinicians who currently or previously had provided psychotherapy to adults with intellectual disability were invited to participate. Clinicians were recruited from two national e-mail distribution lists for clinicians with an interest in the co-occurrence of mental health disabilities and intellectual disability (i.e., National Association of Dually Diagnosed and Association of University Centers on Disability mental health special interest group). Interested parties contacted study investigators via e-mail or telephone call. Study staff then screened for eligibility and availability for focus groups. All participants provided appropriate informed consent via REDCap (Research Electronic Data Capture).

The first set of three focus groups were conducted via the Zoom™ platform with clinicians who had experience working with adults with intellectual disability. A total of fifteen mental health clinicians, including licensed psychologists, psychiatrists, counselors, and social workers, participated in one of three focus groups. Clinician ages ranged from 36–72 years (mean = 55.7 years) and degrees ranged from master’s level therapists to PhD and MD therapists, with 2 identifying as male, 12 as female and 1 not specifying gender. There was representation from multiple regions: Ohio (n = 7), New York (n = 1), Alaska (n = 1), Pennsylvania (n = 1), California (n = 1), Minnesota (n = 1), Colorado (n = 1), North Carolina (n = 1), and British Columbia (n = 1).

Procedure

The clinician focus group guide was developed through a multi-step process. First, an online survey was developed that inquired about the use of specific therapeutic processes and accommodations. An invitation to complete the online survey was distributed to the e-mail distribution lists noted above for clinicians with an interest in the co-occurrence of mental health disabilities and intellectual disability. This was done to assess the degree to which clinicians used the identified accommodations and practices (e.g., modification of therapy structure, use of simplified language, visual supports, involving caregivers). A total of 119 clinicians responded to the survey, with the majority using at least some of these modifications within their practice. These data provided face and content validity to the focus group guide.

We then drafted a semi-structured focus group guide with questions intended to understand the approaches assessed in the clinician survey. Specifically, questions were developed to ascertain clinicians’ experiences related to treatment modalities, accommodations, and practices. Questions were developed in consultation with the study DEEP and REEP. The interview guide included questions about the therapeutic process, modification of therapy structure, use of simplified language, utilization of visual supports, including caregivers in the treatment process, types of assessments employed, and approaches to obtain informed consent. Clinicians were asked to describe the most and least helpful strategies and resources in making therapy cognitively accessible. They were also asked about gaps that they see in the existing intervention literature (in relation to targets of therapy, unique considerations related to clients with intellectual disability etc.). The final list of focus group questions was then presented to the DEEP and the REEP to obtain feedback and suggested edits.

The average length of clinician focus groups was 110 minutes (range 96–121 minutes), with five clinicians participating in each focus group. Attendees were provided with a $25 gift card for their participation. A content expert with clinical and research focus in therapy for clients with intellectual disability led the focus groups.

Focus Groups with Clients with Intellectual Disability

Participants. A total of thirteen adults with intellectual disability participated in one of three focus groups. Adults with intellectual disability (i.e., clients) were eligible to participate if they were aged eighteen and older, reported a diagnosis of intellectual disability and co-occurring mental health disabilities, and had previously received mental health treatment. Clients were recruited from national organizations, including The Arc and ResearchMatch. Clients were also recruited through other national research projects (e.g., the Mental Health and Developmental Disabilities National Training Center), state level departments of developmental disabilities, and through several University Centers for Excellence in Developmental Disabilities (UCEDDs). Mental health professionals who participated in the clinician focus groups also referred clients with intellectual disability. Recruitment materials were shared through e-mail, social media (Facebook, Twitter), and word of mouth. All clients voluntarily called or emailed the site coordinator to express interest and then completed a brief recruitment screening to determine eligibility. All participants provided appropriate informed consent via REDCap. Adults with intellectual disability were provided with an approved clear language version of the consent form. If adults with intellectual disability had a guardian, the guardian also provided consent.

Client focus group participants were aged 19 to 40 years (mean = 27.4 years). Nine identified as female; four as male. Race was reported as follows: African American/Black (n = 5); American Indian/Alaska Native (n = 1); Hispanic/Latino (n = 1); White (n = 6). Ten reported intellectual disability diagnosis; one Fragile X, one autism spectrum disorder, and one other developmental disability. Reported mental health diagnoses were as follows, with many participants endorsing more than one: Anxiety (n = 11), Depression (n = 9), PTSD (n = 7), ADHD or ADD (n = 4), Bipolar disorder or mania (n = 2), and one participant each endorsing eating disorder, conduct disorder/antisocial personality disorder, and substance use disorder. Five participants reported living with family, seven reported living in an apartment, and one participant reported living in a group home.

Procedure

The focus group guide for clients with intellectual disability was developed after completing the collection and initial analysis of the clinician focus groups. This allowed us to elicit perspectives on the specific strategies and accommodations reported to be used by clinicians. Clients with intellectual disability were asked to describe their preferences and perspectives on the most and least helpful strategies and resources in making therapy cognitively accessible. They were also asked about barriers to access to care. Consultation with DEEP members improved content and face validity as well as the cognitive accessibility of the focus group questions. Based on DEEP feedback, the resulting guide included accompanying visual cues and more definitions of terms. Focus group participants were also given opportunities to share new ideas not raised by the facilitator throughout the focus group session.

Focus groups were designed and implemented to meet the diverse needs of adults with intellectual disability. Based on previous participatory action and other focus group research (Gates & Waight, 2007; McDonald, 2019), we used a structured facilitation plan in which the expectations and rules of engagement were reviewed at the beginning of the focus group. An initial meeting was held to ensure each participant had access to appropriate technology and understood how to navigate Zoom controls. We opened each client focus group with an icebreaker activity, presented focus group questions verbally and visually via a shared screen on PowerPoint, and took a break halfway through the focus group. If questions needed to be clarified, the edits were typed into PowerPoint and shared with the group. Participants had the option to respond with voice or to type their responses using the chat function. To ensure that every participant had a chance to contribute, the facilitator called on each participant to respond. Often when a question was posed, several participants would spontaneously respond. Once they were finished speaking, the remaining participants who did not respond spontaneously were invited to share their thoughts in an arbitrary order.

As with clinician groups, a content expert with clinical and research focus in therapy for clients with intellectual disability led these focus groups. Each focus group was conducted via Zoom and lasted an average of 76 minutes (range 42–94 minutes). All focus group members were compensated $25 for participating.

Data Analysis/Transcript Analysis

Three focus groups were conducted with clinicians and three were conducted with clients with intellectual disability. After the third focus groups with both the intellectual disability and clinician groups, it was determined that saturation was achieved with no new themes emerging using the constant comparative method. This “content saturation” is consistent with the research that suggests that threshold tends to occur after 2–3 focus groups with 6–10 participants in each group (Millward, 2012). Subsequently, the research team reviewed transcripts after each focus group to identify common themes.

All focus groups were recorded and transcribed through auto transcription. The produced transcripts were reviewed and compared to the audio recording by a trained research staff member for accuracy and completeness prior to analysis. Verbatim transcripts were imported into Microsoft Excel (Microsoft Corporation, Excel 365, Redmond, WA) for coding by two independent reviewers following the procedures of Grounded Theory described by Strauss and Corbin (1990). Analyses were conducted independently for the focus groups of the clinicians and the clients, respectively. An initial list of themes, corresponding code words, and code word definitions were developed for each set of focus groups. Upon agreement between the two reviewers, the themes were manually coded using open coding. During this process, any emerging themes that developed in the progression through the transcripts were discussed, defined, and the prior transcripts reviewed for potentially missed codes. In the event of emerging themes during the focus groups, new concepts were integrated into the questioning guide using the method of constant comparisons. Codes from the independent coders were evaluated, one focus group at a time, guided by an expert in qualitative data analysis. Agreements and disagreements were coded for inter-rater reliability, and disputes were resolved through moderated discussion by the third-party analysis facilitator. Interrater reliability greater than 85% was achieved across the reviewers and consensus coding was used to bolster trustworthiness of the data. Following open coding, axial coding was conducted for text segments within their respective themes to identify subthemes. The final step, selective coding, allowed us to assess the relationships among themes and subthemes.

The goal was to identify themes that would have pragmatic implications for future research and clinical practice. From this, we would be able to compare the themes and subthemes from the focus groups to the themes that emerged from previous research and practice guidelines. This approach then provided a method to externally validate the expert consensus recommendations as well as the concepts proposed in treatment outcome research. It was anticipated that subthemes might overlap among themes, as many of the concepts of psychotherapy are inter-related.

RESULTS

Focus Group Themes

Eight code words/phrases were identified during open coding of the clinician focus groups, and ten words/phrases were identified in the client with intellectual disability groups. Code words/phrases which emerged from both groups are presented in Table 1. These codes are presented below as themes and were further broken down into subthemes during axial coding. Qualitative analyses were conducted independently for the clinician and client groups; however, several focus group questions overlapped in content (interview guide available upon request). As such, there were several themes and subthemes in common to both groups. The overlapping themes will be described first, followed by unique themes to the clinician and client group, respectively. Table 2 provides subthemes corresponding to each of the codes.

Table 1. Clinician and client themes: code words and definitions.

Code word(s)	Definition in Client Focus Groups	Definition in Clinician Focus Groups
Partnersin Communication	Someone to talk to who is willing to listen and take time to understand them	Meeting clients where they are cognitively, linguistically and treating them as a partner in therapy
Rapport Building	Using interests (to build relationship with client and therapist)	Building a respectful relationship based on an individualized view of the individual
Confidentiality	Confidentiality and understanding of information sharing among team members	Confidentiality
Accommodations and supports	Accommodations through communication and visual supports; accessibility challenges	Actively and dynamically Creating support throughout the therapeutic process
Support People	Involving support people	Benefits, considerations, and challenges of involving caregivers in the therapeutic process
Therapeutic process	Types and characteristics of treatment and how therapist individualized	Assessment/Structure of Therapy/ Treatment modality/
Treatment Goals	How treatment goals are generated and how clients are included	Process of generating goals and challenges
Group Therapy	Experiences and impressions of group therapy	Process of group therapy and perceived positive attributes
Barriers	Personal, team, and systemic barriers	Personal, team, and systemic barriers
Advocacy and Agency	Clinician advocating for client with intellectual disability; client learning self-determination and advocacy skills	Agency, Self-Advocacy, and Empowerment in the therapy process
Therapist Characteristics	Perceived positive attributes of a good therapist; characteristics that acted as a barrier to therapy	N/A

Table 2. Client and provider subthemes.

Themes	Client Subthemes	Provider Subthemes
Partners in Communication	Protected time to talk with someone kind who is willing to listen and try to understand client perspective	Treating client like a person and a partner in therapy – ensuring client feels heard and validated
	Someone to talk to besides a parent	A Person-centered Approach: meeting clients where they are – deciding on appropriate communication and accommodations, working with them to facilitate their own problem solving
	Therapists challenging and encouraging client to change	Do not oversimplify interaction or infantize client; normalize their experiences
Rapport Building	Making therapeutic environment more comfortable by including client interests (e.g., including animals, letting clients bring in their own objects of interest or comfort)	Use client strengths and preferences to guide therapy.
	Using interest as a therapy tool (e.g., using art to express themselves)	More self-disclosure with clients, such as discussion of shared interests
	Playing games or playing with sensory toys while talking	Incorporate shared interest activities into therapy (e.g., listening to music, playing games) and more time listening to clients’ interests
Confidentiality	Therapists asking permission to include others (e.g., support people) in therapy	Emphasizing needing clients’ permission to talk with team
	Some therapists explained HIPPA and related laws (including exceptions to confidentiality)	Reminding clients they need to give permission to bring anyone into therapy
	Many saw benefit in therapist sharing information with others	Difficulty with family or support people who referred them (and feel they should know about client’s progress)
	Discomfort with telling therapist no to sharing information with others
Accommodations and Supports	Breaking down concepts with handouts that can include simplified language, larger font, and more visuals	Allow client sufficient time to respond and to ask therapist for further clarification
	Providing more time to process information and give answers	Simplified language with more repetition, more opportunities to practice
	Sending information home	Hands-on activities to make concepts more tangible (writing stories, event-mapping) and activities considered fun for client
	Closed Captioning for telehealth video visits	Visual supports and reminders (e.g., notecards, analogue clock
	1:1 support in group therapy settings	Incorporation of augmentative and alternative communication in therapy
Involving Support People	Support people help with scheduling/transporting to appointments	Important considerations when including support people.
	Importance of considering clients preferences for inclusion of support people.	Support people used in session to learn and help prompt or reinforce clients for using strategies
	Support people can help in communicating preferences of client	Use of team and family members to help generalize strategies and inform next steps (e.g., when to end); Support people give feedback on how client is doing outside of therapy
	Support people may be able to help with practicing skills outside of sessions
Therapeutic Process	Taking time to get to know the client	Establishing reason for referral and providing psychoeducation on what therapy is and is not
	Individualized and flexible approaches that included goal setting and challenging clients within their level	Importance of flexibility; planning structure of therapy and session with client input
		Use of assessment to determine unmet needs, establish baseline, and measure goals,
	Multiple therapeutic modalities and inclusion of skill building.	Gathering collateral (checking in before and/or after sessions with support person)
	Strategies mentioned included journaling, teaching what is and is not safe, role playing, charts and visuals	Example therapeutic modalities included: EMDR, CBT, play therapy, mindfulness, eclectic approaches, psychoeducation, and homework
Treatment Goals	Help generating goals with therapist’s perspective/input	Differentiation of client’s goals and others’ goals
	Goal generation could take up to several months	Clients are developing their own goals with therapist input
	Goals ranged from daily living skills to managing emotions to avoiding re-hospitalization	Use of assessment to determine goals
	Clients considered therapy a success when goals were met	Challenges to get clients to formulate goals in their own words
	Therapists assessed for improvement and needs throughout process
Group Therapy	Group therapy experiences as not inclusive of people with IDD	Group therapy can be powerful as it encourages clients to teach and help peers
	Anxiety speaking in front of others	Clients can learn they help others through group experiences
	Not enough time to speak	May be first time client is with individuals similar to them regarding intellectual disability and co-occurring mental health issues
	Some viewed group therapy as a way to get more comfortable interacting with others
Barriers	Therapist not understanding client’s disability	Support staff turnover
	Getting therapists to understand their disabilities	Support staff/caregivers having unrealistic expectations or ideas of therapy
	Difficult to find therapists who treat people with disabilities and co-occurring mental health diagnoses	Systemic barriers with mental health and developmental disability systems
	Navigating insurance
Advocacy and Empowerment in Therapy	Therapist empowered individual by having them set up (or give input on) structure of session	Therapy as a powerful empowerment tool
	Therapists teaching individual to advocate for themselves	Clients should have agency in therapy process (e.g., structure of therapy, treatment goals, who will (or will not) be included in therapy sessions
	Reaching out to other providers to advocate for client’s needs (including insurance and financial supports)	Examples for opportunities to teach advocacy and how to empower client
Therapist Characteristics	Value of therapist with lived experience	N/A
	Emotionally supportive and interested in the client as a person
	Does not make client feel judged

Partners in Communication

While not explicitly asked, both clinicians and clients with intellectual disability identified having someone to talk to as an important aspect of therapy. Clinicians spoke about the importance of the client with intellectual disability feeling as though they have protected time to speak with someone who listens to what they say. Similarly, clients with intellectual disability shared that therapy provided them the opportunity to speak with someone who is willing to listen. They saw value in time set aside each week with someone who was trying to understand them.

Clinicians

Clinicians emphasized a cooperative process with clients with intellectual disability as a partner in therapy. The clinician perspective was that it can be a unique experience for an adult with intellectual disability to have dedicated time to talk to someone who is willing to meet them where they are regarding communication and work with them to facilitate their own problem solving. Often this was described as providing a safe place to share thoughts and feelings. As one clinician described, “Just kind of having a safe place to share their thoughts and feelings and feel like they matter.” Clinicians saw that empowerment could come through showing the adult with intellectual disability that their thoughts, feelings, and opinions matter. This can be communicated by treating the client with intellectual disability as an equal adult, not over-simplifying interactions nor infantilizing the adult.

This entailed meeting clients where they are linguistically and cognitively and structuring therapy to maximize their participation and comfort based on this information. A concept that emerged related to this theme was taking a person-centered approach, considering the individual’s experience, background, and previous diagnoses. Clinicians reported starting with the skills the client with intellectual disability has then considering what would work best for them.

Clients with Intellectual Disability

Clients reported valuing that their therapists challenged and encouraged them to change, while also being kind. They identified that the therapist was someone they could speak to when parents are not there. As one focus group member volunteered “it’s like a time set aside each week that I can talk to someone that is willing to listen and not, like, judge me.” Also, the concept of taking time and connecting, as one client explained, “for me it’s taking time with me and trying to understand me.” Many discussed how the therapist would do things such as move therapy outside or incorporate in interests, which made clients feel more comfortable interacting with the therapist.

Rapport Building

Both groups discussed many ways to build rapport. Clinicians and clients discussed the use of interests of the clients with intellectual disability within therapy. They discussed ways that the interests of the clients with intellectual disability facilitated relationship building between therapist and individual and how these interests could also be used to support the therapeutic process.

Clinicians

Clinicians stressed the importance of understanding unique needs of each person at the onset of therapy and employing strategies using their strengths and preferences to guide interactions. They also indicated that there was sometimes a need for the therapist to self-disclose more than usual. This may entail talking about and finding shared interests (e.g., music, movies, collections). Clinicians also used activities to engage clients and help them feel comfortable (e.g., listening to music). This is illustrated by one focus group participant’s practice, “At the initial parts of the visits, I spend time learning about those interests and sharing what I know about it or talk about as hobbies or interests or smart phone applications and, all of the sudden, the clients sees that I am paying attention to them and want to hear what they have to say and I’m not just ticking boxes off to say that they said the right thing. I communicate to the client that this isn’t part of their behavior support or educational plan. This is just about them. And so, for some of my folks, that’s a huge issue in terms of just developing rapport because they go, oh, okay, you really are just here for me, then that’s pretty cool.”

Client with Intellectual Disability

There were several examples of therapists increasing the client’s comfort by using items or pets with which the client was comfortable. This often helped to put them at ease. One client shared, “I like that. I went to my therapy they had dogs there because I live at home with dogs so it kind of me feel more comfortable being with dogs.” Another shared that the clinician knew that she collected a certain type of journal (i.e., Vera Bradley Journals) and brought one into session and they could both talk about it. Others shared being able to manipulate something like playdough or play a board game helped to build rapport. They also discussed how these interests were used as a therapy tool. Interests (e.g., art) were used to allow clients to express themselves in ways besides verbally.

Confidentiality

Clinicians

Clinicians described the aspect of explaining consent and its implications to clients as a therapy component. Clinicians discussed the importance of confidentiality for clients and that it established therapy as a safe place. Confidentiality was seen as especially relevant when sharing information with family and team members (e.g., case workers, caregivers). Clinicians described having discussions with the client with intellectual disability about what would be okay and not okay to share. It was important to them that clients with intellectual disability felt comfortable in therapy to share things they may not share with their entire support team. Therapists described challenges that might be unique when working with clients with a support team. They reported challenges navigating the multiple roles they have, their relationships with the client and other team members, while honoring the therapist-client relationship.

Clients with Intellectual Disability

Overwhelmingly, focus group participants reported being asked their permission prior to the therapist including others in therapy or sharing information. Some were aware of HIPPA and reported that their therapist had explained the laws to them; some participants reported having been told that confidentiality would be broken if there were concerns of harm. Many saw the benefit in sharing information with other members of their support team and/or family members. However, some participants expressed dissatisfaction with the sharing of information. While focus group participants understood their right to withhold permission for the therapist to share information with others, they reported that they had not exercised that right despite feeling uncomfortable. One participant noted “I don’t like when staff talk behind my back to my counselor.” Another client noted, “What my therapist does is – Sometimes she doesn’t keep the conversations private – she will tell my mom … “Not [feel] okay. I feel like it’s invading my space.”

Accommodations and Supports

Both clinicians and clients described the use of creative accommodations and supports throughout the therapy process. Both groups provided many examples of visual supports that were used to break concepts down and make them more concrete.

Clinicians

Clinicians described a dynamic approach of actively creating supports during therapy. They indicated the benefit of using plain/clear language and finding ways to make tangible representations of concepts. Some examples included use of a paper chain to demonstrate behavior chaining, white boards, and paper to draw diagrams or key words, breaking down and writing steps to complete a goal, and event mapping, among other approaches. One clinician noted “I always say to my clients if I say something to you that you don’t understand, that’s not your fault. That’s my fault because I used words that were the wrong words to describe it. And so, when I put that back on me, then they’re more likely to tell me if they don’t understand something.”

They discussed using kinesthetic approaches, such as literally having clients step over cards representing obstacles, or something as simple as taking a walk while talking. Clinicians also stressed the importance of finding ways to reinforce concepts and promote generalization. Therapists discussed providing visual reminders the client could take with them to promote uptake of strategies in other settings (e.g., a note card, journal, bracelet) as well as audio reminders (e.g., recording on electronic device). Other common accommodations included increased time for processing questions or thoughts, and regular repetition of concepts and ideas. It was also reported as important to give clients time to formulate an answer or type it into their augmentative and alternative communication (AAC) system.

Clients with Intellectual Disability

Examples of visual supports provided were stop light visual supports (red, green, yellow) to represent mood escalation, basic mood charts, distraction charts, and pictures on diary cards. Visuals and pictures were used to depict scenarios that are safe and not safe, and safety plans for one participant. While handouts were used, it was noted that they can be overwhelming to clients with intellectual disability, especially if they contain too many words. “Also, it’s hard for me to read stuff with lots of words; feels like that overwhelmed feeling. I like pictures, you know, that’s what helps me learn.” Individuals with varying visual impairments had difficulty if the handout font was too small or not compatible with assistive technology (e.g., screen reading software). Many indicated that they did not use the handouts given to them due to accessibility difficulties, both with the font/format as well as content and reading level. This reflects the general opinions of focus group participants that therapists need to increase the accessibility of therapy tools or ask clients their preference. They also indicated that they found it helpful when therapists took more time to allow responses or to understand what they were saying, even sending materials home to allow more time for them to consider the concept. When conducting video visits, they indicated that captioning was helpful. Some participants indicated that having some type of one-on-one support during group therapy was helpful, at least initially.

Involving Support People (Parent, Support Staff, Friend/Roommate)

Both clinicians and clients with intellectual disability indicated that overall, they found the inclusion of support people in the therapeutic process helpful. Both saw the value of support provided during sessions as well as the support in generalization of skills outside of therapy. Both clients with intellectual disability and clinicians raised challenges and concerns related to the inclusion of support people. A common concern was the inclusion of support people when there is conflict or concerns of abuse or neglect. Several clinicians mentioned the high staff turnover and inconsistencies in which staff members supported the client, making staff inclusion in the therapeutic process especially difficult.

Clinicians

Clinicians varied on how and when support people were included in the therapeutic process. This included practices such as bringing in support people for family therapy, and training or educating caregivers on mental health concepts. The clinicians often spoke about leveraging relationships with support people to promote generalization. For instance, therapists discussed rehearsing skills with support people, or even having clients teach newly acquired skills to their support people. Several therapists encouraged adults with intellectual disability to celebrate successes with their caregivers.

Clinicians mentioned numerous variables to consider when including support people in therapy, including the client’s relationships with support people, timing, mental health knowledge of support person, consent of the adult with intellectual disability, and readiness to generalize skills to new settings.

Clinicians indicated the importance of remembering that paid support staff do not typically have mental health training and may have a limited understanding of therapy and the therapeutic process. Clinicians also discussed diagnostic overshadowing in staff perceptions and a lack of knowledge about mental health. They reported that support people may have difficulty seeing and appreciating change. Clinicians stressed the importance of setting realistic expectations around therapeutic change with clients. They discussed needing to remind support people that progress can be small and sometimes slow.

They stressed listening to support people’s perspectives but considering their reports within the context of the client’s needs. Clinicians also discussed other logistical considerations related to including a support person such as deciding if it was worth including support people, especially if conflict was present. All clinicians indicated that they obtained informed consent to include others in therapy and/or to share information with them.

Clients with Intellectual Disability

Clients shared that they appreciated their support person’s encouragement and support in helping to complete therapy homework and remembering to use strategies at home. Several participants shared that their support people helped to facilitate communication in therapy and helped to convey their current concerns when initiating therapy. Support people also provided care management, such as providing rides and assisting with scheduling. As one participant shared, “I talked to her [referring to participants mother] a lot about like what helps me and what doesn’t … and she kind of helps explain to the doctors what works and doesn’t work as well.”

Clients with intellectual disability raised concerns about respect and privacy when support people are involved in therapy. They discussed wanting their own perspectives and opinions valued and prioritized over their support people’s opinions or reports. Some indicated a fear of speaking in front of staff, especially if the relationship is contentious. For instance, one participant shared an experience involving a staff member with whom he did not get along who took up too much time in his therapy sessions and would attempt to get the therapist to align with the staff member.

A few clients with intellectual disability indicated conflicted feelings about inclusion of support people and discussed feeling uncomfortable sharing; some indicated that they had changed their mind and no longer wanted support people included. Based on discussions during the focus group, it was not clear that the participants understood that consent to share information could be rescinded.

Therapeutic Process

Both groups discussed the therapeutic process and discussed related themes and subthemes. Clinicians and clients cited many examples of treatment modality, including cognitive behavior therapy, dialectical behavior therapy, acceptance and commitment therapy, eye movement desensitization and reprocessing, play therapy, and mindfulness-based stress reduction. Several also discussed skill building (e.g., teaching safety skills, emotion regulation, problem solving, and asserting boundaries). Clinicians’ discussions related to the therapeutic process, which comprised the subthemes of structure of therapy and assessment.

Clinicians: Structure of Therapy

Clinicians provided rich details on how they initiated therapy, which prioritized informed consent and the related considerations of education about the therapy process and discussions around the reason for therapy. Many therapists discussed folding the reason for seeking therapy into the broader discussion of informed consent.

Many therapists described how they initially explained therapy to clients, conversations which often included discussions of privacy, expectations, boundaries, and types of techniques used. They stressed being very concrete and providing repetition helps to create appropriate expectations and boundaries. One therapist noted, “I often say, ‘you’re not here because you’re in trouble, because I think people often feel that way because they did something wrong…but also…telling them what therapy is and isn’t – how it is different than a social relationship… I’m not going to come to your house for supper. But I’m here to help you and you don’t have to help me and defining those boundaries more.”

In addition to setting up therapy, clinicians spoke extensively about the structure of sessions. They shared the importance of making sessions flexible and tailored to the individual’s needs. Flexible approaches to sessions included taking a more directive approach, taking more time to develop rapport, adapting the length of appointments, conducting home visits when possible, and thoughtful considerations about when it was appropriate to invite support people to sessions or to provide collateral information to monitor treatment goals. Regarding taking a more directive approach, one clinician noted that it was overwhelming to ask open-ended questions and to have clients attempt to reflect on the last 1–2 weeks. In taking a more directive approach, the clinician was able to structure sessions better and make the client feel more comfortable. They also stressed using collateral information to help shape their conversations with the client.

Clinicians: Assessment

Mental health clinicians discussed incorporating assessment throughout the therapeutic process. They indicated that conducting assessments with clients with intellectual disability at the outset of therapy assisted them with understanding the client’s level of language and level of functioning, social skills, problem solving and executive functioning, among other variables. In addition to direct assessment, clinicians discussed using collateral information. Several clinicians mentioned the importance of assessing client’s strengths and interests. Clinicians also used assessments to determine whether clients were meeting their goals.

Clinicians also emphasized assessing the environment of the individuals with intellectual disability. The topics of assessments were issues related to safety, but also those related to the complex interactions of the individual with their environment. This included assessing the level of supports in place in the client’s environment to help clinicians understand to what extent support people can or should be included in therapy. Clinicians also assessed opportunities to change the environment to support the individual’s mental health.

Clinicians noted challenges with assessment of adults with intellectual disability. Most notable was the need for more instruments normed for adults with intellectual disability. They indicated that they often would have to make changes to the assessment protocol to help the client understand the assessment concepts or items. This included practices such as translating items into to clear language, using gestures and other tools to help clients understand a rating of intensity on an assessment scale.

Clients with Intellectual Disability: General Therapeutic Considerations

Clients with intellectual disability discussed the importance of flexibility and listening to clients with intellectual disability explain what their disability means to them. Understanding that everyone is different, even if they share the same diagnoses. “I’d like the therapist kind of listen better and let me try to like to talk about my disabilities because everyone’s disabilities are different you know; it’s not all the same. So, I guess kind of being a little flexible and listen.” They valued pacing that meets clients’ needs and does not force them to do things they are not able to do. However, they preferred having a clear purpose to therapy and working with them to challenge them to meet attainable goals. As one participant shared, “It wasn’t helpful just going and talking over and over again. Once she like added something to challenge me it made it better.” They also shared work that their therapists had them do in between sessions, “Like every day, she has me do this like circle has all these different emotions and she has me color. On the emotions. Like pick a color. Like each emotion is. And then, um, she has me also like has me draw on paper that is like if I feel like the emotion in my body like and so I do that every day at the end of the day … . But the whole point of doing that daily thing is she’s trying to help me to form a routine because I struggle a lot with keeping routines.”

Treatment Goals

Both clinicians and clients described a cooperative process of goal generation during which the client with intellectual disability worked with the clinicians to determine treatment goals.

Clinicians

Clinicians emphasized the opinions of their clients when assessing needs and progress toward goals, as one clinician stated, “We are looking at the data points, but we’re having conversations with the client about their perspective on their success with treatment goals.” However, Clinicians they reported finding it challenging to get goals in the client’s own words. They indicated that it could be a challenge to separate the client’s goals from those of their family and/or direct support providers. One clinician shared that they explicitly asked about caregiver’s goals so they can differentiate the client’s needs from those of the support person.

Clients with Intellectual Disability

Clients described generating treatment goals with support or input from their therapist and support people (e.g., family members). For instance, when asked if their therapists helped them create treatment goals, one participant shared: “Sometimes. And sometimes she even adds her own because she knows me so well.” Several clients shared that their clinicians regularly monitored progress toward goals to structure their work.

Clients provided examples of a range of treatment goals, which included getting through the day, daily living skills, advocating for themselves, and understanding and handling emotions. One client “I wanted to learn about my coping skills and how to handle my emotions and how to speak up when I’m in a crisis.” When asked their definition of success, clients with intellectual disability shared the following: meeting all goals, learning how to cope when triggered, increased independence, and avoiding being hospitalized again. One client shared, “I want to be able to not be able to have people always right there with me” when talking about his idea of success in therapy resulting in more independence.

Group Therapy

When asked about group therapy, both clinicians and clients with intellectual disability provided a great deal of information about the many nuanced aspects of this delivery modality. Common group therapy topics included skill-building topics such as asserting boundaries, developing social skills, and sex education.

Clinicians

Several clinicians spoke positively about the impact of group therapy on clients with intellectual disability in terms of more rich learning opportunities and increased opportunities to interact with peers. Clinicians indicated that group therapy can be powerful for adults with intellectual disability to be with their peers who are dealing with similar issues. One clinician shared, “Sometimes when they come into a group like this, not only do they have a group of peers that are operating at the same sort of speed that they are in developmental level, but they’re also working on the same types of issues and that…positive peer interaction and development can be super powerful when it comes to therapeutic change.” Several clinicians shared that group therapy helped to empower members to help other members of the group. One clinician shared that more senior members were able to teach new members, which helped promote skill maintenance and increase positive peer relations.

In terms of supporting group structure and dynamics, clinicians indicated that even though it was resource-intensive, including a co-leader was helpful to manage the group (e.g., help clients maintain focus). Several clinicians shared that helping senior group members “graduate” to co-lead positions was especially empowering for clients.

Clients with Intellectual Disability

A number of themes related to the barriers and difficulties emerged in the client group. Many indicated that they did better in a one-on-one setting. They shared that in group therapy they did not have time to talk, and that people did not seem to listen to them. A common theme was anxiety about talking in front of others. Some relayed experiences where group facilitators did not act inclusively. One participant shared, “Group therapy is awful for me. I tried to do this like outpatient IOP program once and they kicked me out because I need to like do something with my hands a lot and I rock a lot. So, they kicked me out because of that, and I don’t know. I just feel like I have a hard time interacting with groups, like sometimes to shut down because I can’t, I need to have like one on one.” A second participant shared that they had also been removed from group therapy for engaging in rocking (e.g., stereotypy). Another relayed an experience where she did not feel she was given as much time to speak as other group participants due to her communication skill level.

A small number of participants indicated that they liked group therapy and would be comfortable with a mix of individual and group therapy. One shared that they at least found it helpful even if it was not enjoyable: “At first, some things can be difficult, but you end up they end up helping you so I kinda enjoyed and hated it at the same time.” Reasons for liking group therapy included enjoying that group members supported each other and liking the opportunity to interact more with others.

Barriers

Numerous barriers were identified by clients with intellectual disability and clinicians alike. Several overlaps were observed between the reports of clients with intellectual disability and reports of clinicians, including structural barriers and the involvement of support people. Clinicians reported difficulty with some support people not having sufficient knowledge about mental health, which precluded generalization to non-therapy settings. Structural barriers for both groups revolved around issues of access. clients with intellectual disability shared challenges related to insurance and other funding (e.g., Medicaid, waivers).

Clinicians

Clinicians shared that there were not enough therapists trained to deliver mental health services to the intellectual disability population and discussed the complicated separation between intellectual disability and mental health service delivery systems.

Clients with Intellectual Disability

Barriers cited by clients with intellectual disability pertained to structural barriers (access to therapy), involvement of support people, difficulties with group therapy contexts, and therapists not understanding their disability. They also indicated difficulties with their perception that some therapists did not seem to take an individualized approach or were not flexible in their treatment approach. One participant shared, “She did like the same routine with every kid and I just kind of felt like it wasn’t like helping me. Really, it wasn’t really right for my life wasn’t really the right routine for me.” When asked about areas for future training, many participants with intellectual disability shared that therapists should get more training related to disabilities and be more flexible in their approaches.

Advocacy and Agency/Empowerment in the Therapy Process

Both clinicians and clients with intellectual disability talked about how advocacy was integrated into therapy. While they both described the client with intellectual disability learning advocacy skills as a part of therapy, other topics were more unique between the two groups.

Clinicians

In Clinician groups, themes emerged related to empowering clients with intellectual disability to have agency in the therapy process and to understand concepts related to advocacy and self-determination. Clinicians shared that they saw therapy as helping clients to think about what THEY (the client) think is important or would help them. They shared several ways this can be accomplished, such as empowering clients with intellectual disability to make decisions regarding confidentiality and disclosure and focusing on clients’ motivation and desire for therapy-even when referred to therapy by someone else. They also emphasized teaching clients to advocate by modeling or having them practice in therapy. One example given was informing clients that it is okay to tell their therapist they are not understanding what the therapist is saying. Another common example was having the client with intellectual disability act as a teacher to their support team/support staff to explain a concept learned in therapy. This also shows their team they have the ability and skills to self-advocate.

Client with Intellectual Disability

While clients with intellectual disability did describe learning to advocate for themselves, most of their discussion surrounded how others were advocating on their behalf. They provided example of their family, service coordinator, and case manager advocating for them to get therapy in the first place. They also provided examples of their therapist advocating for them. This included advocating to physicians and other service providers to get the services/supports the client needed. They also collaborated with the care team. One client shared how her therapist helped her to advocate for herself, “shared, “when I started my care. I didn’t talk to people. My therapist gave me some better ways to talk to people. So, we work a lot on saying out loud, what I need. So, I can better speak up for myself.”

Client with Intellectual Disability: Therapist Characteristics

Clients with intellectual disability identified the importance of having a therapist that was emotionally supportive and took time to try to understand the unique challenges and stress related to having an intellectual disability. Many reported difficulties finding the right therapist that understood their unique needs. Therapists with lived experience in disability were seen as something that was or would be valued. “Because they could just understand my struggles and what I go through on a on a daily basis.” It was also important that clients felt that their therapist was interested in them as a person and that they didn’t feel judged. “They have a chip on their shoulder. When they see somebody that has a disability, like they don’t want to take the time to listen to their frustrations or their problems.” “They [the therapist] didn’t give really good eye contact with me.” One participant summed up these concerns stating, “I would have sessions with therapists and teach them how to treat people with disability on equal grounds.”

DISCUSSION

The purpose of this study was to obtain the perspectives of psychotherapy from adults with intellectual disability and the clinicians who serve adults with intellectual disability and mental health conditions. There is an emerging base of clinical research and practice guidance on this topic. However, to-date this is based on researcher and clinician expertise. The goal of this project was to compare the emerging research base to the perspectives of adults with intellectual disability and clinicians, looking for areas of alignment and potential additional consideration. Such results can be used to guide future research, training, and the compilation of up-to-date practice guidelines for meeting the mental health needs of adults with intellectual disability in psychotherapy.

Alignment with Previous Research

Results broadly aligned with previous research and expert opinion including foundational concepts of therapy (e.g., assessment, communication, accommodations/support within therapy); and the therapeutic process (structure of therapy, delivery modality). Subthemes in these areas provided rich examples of therapy in action as well as preferences and important considerations from the perspective of adults with intellectual disability and clinicians. Key aspects of treatment practices and accommodations previously identified in the psychotherapy research literature included the use of simplified language, visual supports, involving caregivers, and teaching prerequisite skills (A. W. Witwer et al., 2022). Many of these aspects were discussed by both clinicians and clients with intellectual disability as being perceived as effective in therapy. Participants provided further commentary on why they were helpful, as well as challenges and barriers in therapy. Many of the techniques which appear in the treatment research were directly referenced, such as using stop lights to describe thoughts (Roberts & Kwan, 2018), and diaries with pictures of faces to depict moods (Douglass et al., 2007). Clinician focus group themes included content related to considering the individual’s level of communication, individual preferences, and treatment goals when determining the type or combination of adaptive therapeutic techniques. These themes are rarely addressed in the treatment outcome literature.

Clinicians were not asked directly, nor did they mention using specific manualized treatments. They emphasized the importance of making sessions flexible and tailored to the individual’s needs. This also emerged as a preference in the clients with intellectual disability. Manualized treatment systematizes interventions and improve treatment fidelity, which may address clinicians’ reports of feeling inadequately resourced and trained to work with clients with intellectual disability. Historically, research has suggested that the use of manual-based treatments in clinical settings is associated with improved client outcomes (Goldstein et al., 2012) and well-designed treatment outcome research (Nezu & Nezu, 2007; Rounsaville et al., 2001). They also may be easier to modify for new populations (Goldstein et al., 2012). Additionally, there are a number of emerging manualized treatments in the literature (e.g., Hassiotis et al., 2013; Jahoda et al., 2017; Thom et al., 2022). However, additional inquiry is required to determine if there is a way to recognize patient preferences for flexibility while implementing manualized treatments.

Existing psychotherapy research is evenly split between the use of group versus individual therapy (Witwer et al., 2021). Clinician themes tended to reflect overall positive perceived benefits and experiences from group therapy. While clients with intellectual disability subthemes also reflected an appreciation of the value, their subthemes also reflect concerns and unease with the group format. This included feeling overwhelmed with the social requirement of group therapy. Another subtheme in group therapy was bias and discrimination experienced in groups.

Newly Emerging Topics

Focus group analysis identified a priority not found in previous psychotherapy research or guidance: person-centered practices. This included themes such as advocacy/empowerment in therapy and confidentiality. In addition, the rich subthemes involving support people provided a number of important considerations related to person-centered practices in therapy.

The theme of advocacy and empowerment in the therapy process is a concept that has not been explicitly described in psychotherapy existing literature. Both clinicians and clients with intellectual disability described therapy as a tool to enable empowerment. This included subthemes of the clinician involving the client in planning therapy and clients with intellectual disability being given agency throughout the therapy process. Advocacy emerged as another subtheme, with clinicians advocating for their clients as well as teaching clients to advocate for themselves. Subthemes related confidentiality highlight the need for careful consideration on how information is shared among team members and the degree to which the client with intellectual disability feels they have control over information sharing. Related, the theme of involving support people included subthemes illustrating the benefit of support people, but also the need to consider the preferences of the client with intellectual disability for if, how, and when support people are included. These themes deserve additional attention in the research as well as how they are incorporated into practice guidance.

Practice Implications

Taken together, this study highlighted several practices endorsed by both clinicians and clients with intellectual disability, including the use of flexible approaches in treatment and use of accommodations (e.g., allowing ample time to process, frequent repetition of concepts, use of visual aids, bringing in support people with consent of client, etc.). Our analyses also underscored a number of considerations to make when initiating a therapeutic relationship. This starts with education on informed consent and the therapeutic process and understanding the reason for referral and the client’s motivation for therapy. Additionally, clinicians in this study indicated a benefit to educating their clients on the nature of the therapist-client relationship, taking ample time to build a relationship with the client across multiple sessions before beginning active treatment. Results of this study support being thoughtful in how and when support people are included in therapy. When including support people, it is important to ensure that permission to include support people is given by the client and then regularly check in to ensure the client has not changed his or her mind. However possible, empower the client to choose who they involve in therapy, when, and to what extent and differentiate the client’s needs and goals from those of the support person. Findings regarding group therapy indicate that clients with intellectual disability may need more support at the beginning of group therapy to empower them to speak freely, particularly in groups where not everyone has an intellectual or developmental disability. Relatedly, educating clinicians on the unique needs of the intellectual disability population and the importance of adapting therapy (whether individual or group) is a significant take-away for readers hoping to train clinicians.

Barriers

There are a number of barriers that still need to be addressed to help support the well-being and mental health of adults with intellectual disability. Despite emerging evidence supporting the effectiveness of psychotherapy, the rates of uptake of mental health services do not match the need (Whittle et al., 2018). Significant barriers to detection and effective treatment of mental health include: a) a lack of mental health practitioners trained to care for patients with intellectual disability (Whittle et al., 2018) and b) therapists’ doubts about the efficacy of psychotherapy for adults with intellectual disability, leading to reduced confidence in and willingness to provide treatment to this population (McNally et al., 2015). Subthemes of both clinician and client focus groups reflected this, with clinicians noting the lack of available providers and clients noting that their clinicians did not seem to understand disability. Both groups also noted challenges with the service delivery systems and the difficulties operating within the developmental disability and mental health systems.

Study Limitations and Areas for Future Research

When interpreting the data of this study, some limitations should be noted. Due to the nature of the study (i.e., online focus groups), we relied on self-report for client diagnoses. As such, we do not have detailed information on the level of intellectual disability of the participants, nor their specific mental health diagnoses. In addition, the results of this study may not be representative of those with more significant levels of cognitive, adaptive, or language impairment.

In treatment outcome research in intellectual disability, therapeutic practice and accommodations are typically described as part of the treatment package. To date, there is no data available on the relative effectiveness of different accommodations nor their specific impact on the therapeutic process. This would be valuable information for clinicians who are often trying to balance meeting the needs of clients and attending to the needs of caregivers within the constraints of insurance and other structural requirements. Future research should consider the results of this study in the development of such comparative projects. Two areas of note are the inclusion of support people and group versus individual therapy. Both clients with intellectual disability and clinicians found value in the inclusion of support people; however, it was highly variable how and when support people were included. As the inclusion of support people does come with some barriers and areas of caution, having information on the relative effectiveness of inclusion could help clinicians weigh the costs and benefits of the support persons inclusion in therapy. In addition, while both groups generated themes reflecting the benefit of group therapy, client subthemes include concerning concepts such as ableism on the part of clinicians and not being given adequate time to talk during group therapy. Future research should seek to address these concerns and reevaluate the acceptability of therapy.

Author Note

The contents of this manuscript were developed as part of a Rehabilitation Research and Training Center (RRTC) on Health and Function awarded to The Ohio State University (OSU) Nisonger Center through a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90RTHF0002-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this manuscript do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.

Acknowledgments

The Ohio State University Nisonger Center RRTC on Health and Function (90RTHF0002-01-00) consists of the following collaborators in alphabetical order by last name: Susan Havercamp, Rebecca Andridge, L. Eugene Arnold, Jarrett Barnhill, Ethan Boerner, Alixe Bonardi, Mary Lou Bourne, Christine Brown, Andrew Buck, Sarah Burkett, Richard Chapman, Chelsea Cobranchi, Christopher Cole, Dan Davies, Travis Dresbach, Jeanne Farr, Robert Fletcher, Braden Gertz, Jill Hollway, Margo Izzo, Gloria Krahn, Rosie Lawrence-Slater, Luc Lecavalier, Alexa Murray, Kristin Page, Samantha Perry, Ashley Poling, Paula Rabidoux, Robert Rice, Ann Robinson, Margaret Rosencrans, Megan Ryan, Christopher Sanford, Colin Schaeffer, John Seeley, Karrie Shogren, Kristy Stepp, Marci Straughter, Lara Sucheston-Campbell, Marc J. Tassé, Christopher Taylor, Katherine Walton, Michael Wehmeyer, Craig Williams, Andrea Witwer

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the National Institute on Disability, Independent Living, and Rehabilitation Research [90RTHF0002-01-00].