“Trying Something New Comes with so Much Anxiety”: Outreach, Engagement, and Program Recommendations from Transition-Age, Out-Of-School Youth with Disabilities from Minority Backgrounds

Abstract

Out-of-school youth with disabilities (youth) from minority backgrounds face significant barriers in transitioning to adulthood. Centers for Independent Living (CILs) can offer critical services to this population. This study explored ways that CILs can improve their outreach and programs for youth who come from minority backgrounds. In June 2022, the research team conducted three virtual focus groups, each of which included seven to ten participants who lived in Illinois, New York City, or South Carolina. Two researchers conducted content analysis using inductive coding for each focus group transcript to identify emerging themes. Participants’ responses reflected specific themes for CILs to improve their outreach, engagement, and program offerings. Expanding and exploring these themes provides actionable policy and practice recommendations for staff from CILs and other organizations to improve outreach to and engagement of minority youth and support their employment, community participation, and independent living goals.

Youth with disabilities face challenges in transitioning to adulthood, such as lower rates of employment and postsecondary education and higher rates of incarceration (Cheng & Shaewitz, 2021). Frequently, they also lack information about opportunities and supports to pursue employment and further education, live independently, and build communities and social relationships (Pallisera et al., 2016; Pandey & Agarwal, 2013). Youth with disabilities who identify as people of color or from minority backgrounds may face additional challenges transitioning to adult life, including higher risks of poverty and unemployment and, for Black youth, risk of alienation from their communities when striving for postsecondary or professional goals (Cameto et al., 2003; Kucharczyk et al., 2022; Lipscomb et al., 2018). In this article, we alternate usage of the terms minority and people of color; some individuals from minority backgrounds might prefer people of color to refer to people who identify as Black, Indigenous, or people of color and who might be underserved by disability service providers. Youth with disabilities who identify as people of color require culturally responsive services to support their transition to employment, postsecondary education, and adulthood. Effective services might include additional support with goal setting, person-focused planning, and mentorship, especially with mentors who share their ethnic or racial background (Cameto et al., 2003; Kucharczyk et al., 2022; Lipscomb et al., 2018; Thoma et al., 2015).

Youth with disabilities who identify as people of color and who are between the ages of 14 and 24 and have graduated or otherwise left school face additional challenges in accessing services and transitioning to adult life (Honeycutt et al., 2017). Though literature demonstrating effective transition strategies for this population is limited, evidence-based strategies for youth with disabilities generally suggest that work opportunities and person-centered support services play a key role in successful transition outcomes (Luecking & Wittenburg, 2009; Mann & Wang, 2021). To better inform service delivery for out-of-school youth with disabilities (youth) who identify as people of color, organizations that offer services to this population might benefit from consulting youth who identify as people of color to understand their lived experiences, transition needs, and preferences for service delivery (Clandinin & Rosiek, 2007; Ducket & Pratt, 2001; Dullea & Mullender, 1999; Kitchin, 2000; Niesz et al., 2008).

Centers for Independent Living (CILs) are federally funded, consumer-driven, community-based, cross-disability organizations designed and operated by staff with disabilities; thus, CILs have an opportunity to support youth who identify as people of color. CILs offer core services for people with disabilities to support their full community integration, such as peer counseling, independent living skills training, transition services, individual and systems advocacy, and information and referral (White et al., 2010). In 2014, the Workforce Innovation and Opportunity Act (WIOA) amended the Rehabilitation Act of 1973 to mandate that CILs support transition-age youth with disabilities as a core function (WIOA, 2014). Though CILs might have served transition-age youth before WIOA’s passage, the policy affirmed CILs’ focus on supporting youth through services related to self-advocacy, work readiness, and other independent living services.

Given their focus on transition services, CILs might benefit from research and further support in providing services to out-of-school youth with disabilities who identify as people of color. Existing research on CILs’ transition services focused on providing transition services to students with disabilities, not to out-of-school youth with disabilities, who might benefit from different types of services or supports than students (Muthumbi, 2008; Neubert et al., 2018; Oertle, 2009; Oertle, 2015; Oertle & Seader, 2015; Oertle et al., 2013; Plotner & Alters, 2022; Plotner et al., 2017; Wehmeyer & Gragoudas, 2004; Wilson, 1998). Further, though CILs reported serving youth consumers, including youth consumers who belong to racial or ethnic minority groups. In a 2020 survey of 218 CILs, CILs also reported training needs related to outreach and engagement of youth who identify as people of color (Feldman et al., 2022).

To address gaps in knowledge about how CILs can better serve out-of-school youth with disabilities who identify as people of color, the Minority Youth and Centers for Independent Living (MY-CIL) project was established as a joint effort of Hunter College; the Center for Independence of the Disabled, New York; Independent Living Research Utilization; and Mathematica. The Administration for Community Living’s National Institute on Disability, Independent Living, and Rehabilitation Research and the Office of Independent Living Programs funded MY-CIL to fill the knowledge gap on services to help traditionally underserved youth that have already left school and to improve outcomes for out-of-school youth and young adults (ages 14 to 24) with disabilities who identify as people of color. Specifically, the project seeks to produce and share knowledge that empowers Centers for Independent Living to improve outcomes for youth and young adults with significant disabilities from nationally recognized racial and ethnic minority groups who have completed or otherwise left secondary education. MY-CIL develops and shares new knowledge with input from CIL staff and youth participants, as well as other experts such as providers, policymakers, and advocates. An advisory group provides input on the design and execution of all research and training activities.

For this study, the research team included a disabled researcher with experience engaging people with diverse disabilities in qualitative research and employing Community-Based Participatory Research techniques. This orientation led to the research team prioritizing accessible practices throughout the research, communicating authentically, conveying empathy, and sharing research findings with youth participants.

The research team conducted three focus groups comprised of youth who identify as people of color to learn how CILs and other organizations can improve their outreach with, engagement of, and design of programs. Outreach refers to identifying, contacting, and linking individuals to available services and supports. Engagement reflects establishing relationships with individuals and meeting individuals where they are with supports and services that meet their self-defined needs and interests. Programs include standalone or a series of group activities that support individuals to meet their goals related to community participation, employment, education, and independent living.

Research questions for this study include the following:

• How can CILs and other community organizations better engage out-of-school youth with disabilities (youth) from minority backgrounds?

• What factors support or hinder youth from minority backgrounds to engage with CILs?

• What are the unmet needs related to postsecondary or career preparation and employment opportunities for youth from minority backgrounds?

• What types of services and resources would youth from minority backgrounds like to receive?

Methods

This qualitative study employed focus group discussions with out-of-school youth with disabilities who identify as people of color to understand how CILs and other community organizations can improve outreach, engagement, and service and program offerings to meet their independent living needs. Qualitative research describes people’s needs, values, perceptions, interactions, and experiences with their immediate community. Qualitative evidence is therefore very important for improving understanding of how, and to what extent, youth perceive services as effective and acceptable, and examine whether policies and programs are working or how they could improve to be more effective. Qualitative techniques were chosen to extend and deepen understanding of this population and to address limitations in available literature exploring youth with disabilities from minority backgrounds’ experiences, facilitators, and challenges transitioning to post-secondary education or work.

Screening and Recruitment

Three CILs involved with the MY-CIL project learning collaborative—Able South Carolina, which offers services throughout the state; Center for Independence of the Disabled, New York, which serves the New York City metropolitan area; and Southern Illinois CIL, which offers state-wide services—recruited youth who identify as people of color who resided in their service areas for focus groups. Before drafting the recruitment materials, the research team met with the CILs to discuss recruitment and focus group procedures and to set the incentive payment amount of $100 to each participant. The research team then drafted a recruitment flyer and sample social media posts in clear, reader-friendly language and in an accessible format. All materials included an email address and phone number to accommodate written, text message, and phone call communication preferences; a QR code linking to the online screening survey; and information about participants’ $100 gift card incentive payment. The Minority Youth and Centers for Independent Living stakeholder advisory group, comprised of CIL staff and experts in the independent living field, and staff from the three CILs reviewed recruitment materials and the focus group protocol and suggested revisions. After the research team incorporated edits, CIL staff shared recruitment materials with community partners and through their Facebook and Twitter accounts.

Researchers fielded an accessible online screening survey using QuestionPro to identify participants. People who responded to the CIL outreach completed a survey to share their age, disability status, area of residence (South Carolina, Illinois, or New York City), race and ethnicity, and school status (see Appendix A). In the two days that the research team kept the screening survey open, 522 participants completed the online screening survey, and 222 of those participants met qualifying criteria for the five characteristics. After screening participants for eligibility through the survey, one member of the research team randomly selected between 12–16 participants to contact per focus group and called each participant to review the informed consent form and confirm they were between 14 to 24 years of age, reported at least one disability, belonged to a nationally recognized racial or ethnic minority group (that is, Black or African American; Asian; American Indian or Alaska Native; Native Hawaiian or other Pacific Islander; or Hispanic, including persons of Mexican, Puerto Rican, Cuban, and Central or South American origin), were not currently a student (thus, out-of-school), and resided within the CIL partners’ geographic service areas. Youth attested to having a disability, but screening did not require them to disclose the disability type. The team member also asked participants for information about their gender identity, employment status, and familiarity with CIL programs. After answering any questions from the respondent, the team member recorded verbal consent or assent and sent the participant a written copy of the consent form over email or text message, based on their preference. Next, the team member briefly explained the Zoom platform (used to host focus groups), including information about how to install the mobile app or dial in and how to use Zoom features to mute and unmute and enter text into the chat box. The team member then confirmed the $100 gift card incentive payment and requested their consent to audio-record focus group meetings. In total, the team member contacted 46 survey respondents who were between the ages of 14 and 24, attested to having a disability, lived in South Carolina, Illinois, or New York City, identified as a person of color, and were not currently in school. Of the 46 survey respondents that the research team contacted, 26 responded to outreach, completed consent and assent procedures, and participated in the focus group.

Participants

A total of 26 youth participated across all focus groups. All participants were between the ages of 18 and 24 (inclusive). Most graduated from high school or earned their GED and self-identified as Black or African American. Many participants identified as male, and most had heard of CILs but had not participated in CIL programs (refer to Table 1).

Table 1.

Characteristics of Focus Group Participants

	Number of participants
Characteristics	IL focus group (N = 10)	NYC focus group (N = 7)	SC focus group (N = 9)	Total (N = 26)
Age
18 to 21 years	3	4	4	11
22 to 24 years	7	3	5	15
Graduated from high school or earned GED
Yes	9	5	7	21
No	1	2	2	5
Race
Black/African American	7	6	8	21
Asian	2	0	0	2
Hispanic	0	0	0	0
Native Hawaiian/Other Pacific Islander	1	1	1	3
Gender
Female	3	3	3	9
Male	7	4	6	17
CIL awareness
Heard about CILs before	6	4	8	18
Had not heard of CILs before	4	3	1	8
Participated in CIL programs or activities	1	1	1	3

Source: Data on race and ethnicity come from participants’ responses to the online screening survey. Data on age, gender, and CIL awareness come from participants’ responses during phone call screens. Categories for race and ethnicity and CIL awareness are not mutually exclusive.

Notes: IL = Illinois; NYC = New York City; SC = South Carolina; CIL = Centers for Independent Living

Focus Group Procedures

In June 2022, the research team hosted three virtual, 90-minute focus groups on the Zoom platform, one for each of the three geographic locations (IL, NY, SC). Each focus group included 7 to 10 participants. To open the focus groups, the two-person research team welcomed participants to the focus group, reminded participants of Zoom functionalities, discussed confidentiality, and confirmed permission to record. As the research team determined in advance, during the focus group, one researcher facilitated the group and all verbal responses, while the other researcher monitored the chat, provided written questions in the chat shortly after questions were posed verbally, and took notes. Participants were encouraged to turn cameras on if they were comfortable, but video was not required, and many participants opted not to use video. Participants could share their thoughts verbally or in writing based on their preferred communication mode. Because participants received directions about installing the Zoom application and an orientation to Zoom features in advance, participants did not have problems joining or interacting in the focus group. A professional transcription company transcribed audio recordings. Appendix B contains the focus group protocol.

Analysis

The research team imbedded rigor in the research and analysis. Meeting with participants individually to explain the informed consent and provide technical assistance, if needed, to set up and practice using the Zoom platform helped participants to feel comfortable. The researcher with a disability explained her positioning as a member of the disability community and normalized using alternative techniques and adaptive technology to participate in the Zoom. This helped to build rapport with participants. The research team of two qualitative researchers also triangulated data by cross-checking the data and interpretations within and across each focus group. The research team independently conducted content analysis of transcripts and notes using inductive coding for each focus group transcript to identify emerging themes according to an analytical codebook based on the focus group protocol. Content analysis involves systematic coding and categorizing to examine large amounts of textual information unobtrusively to identify trends and patterns of words used, including relationships of words and phrases, in order to illuminate consistencies and differences and make sense of findings (Hsieh and Shannon, 2005; Patton, 2002; Vaismoradi et al., 2013). After each researcher reviewed transcripts in their entirety, they created working definitions for each code. Text that did not fit under predetermined coding generated additional new codes. Iterative coding organized text into manifest (explicit terms or concepts) and latent (underlying, implicit terms and meanings) to build categories of codes and ultimately themes (Morgan, 1993). The research team generated and refined a codebook to include an organized list of the codes and specific definitions and examples to demonstrate application for each code. The codebook helped ensure consistency and reliability throughout coding the set of transcripts, and provided an audit trail, illustrating additions, modifications, and clarifications of codes (Bowen, 2008). The research team then met to compare and discuss the coding to identify emerging themes across the three focus groups, to ensure categorical themes were distinct and encompassed all coded categories, and to reach consensus on the findings.

Results

The responses from focus group participants reflected specific ways that CILs and other organizations could improve outreach, engagement, and program offerings for youth from minority backgrounds.

Methods for Effective Outreach

Focus group participants described outreach methods that would increase interest and participation in organization offerings from youth with disabilities who come from minority backgrounds.

How Youth Learn About Independent Living Resources and Opportunities

Most participants shared that they rely on social media, including Facebook and Twitter, for information about community groups and programs. The reasons are varied: to receive words of encouragement, find more information about the disability community and opportunities to participate in studies or groups, and make friends with other people with disabilities. Organizations can meet youth where they already are by sharing on social media and through their websites, including updates and information about how to join programs.

Many participants also hear about community organizations from friends, family, church members, caregivers, or doctors. If trusted sources provided a reference, participants indicated they were more likely to attend.

Key Information Youth Want to Know Before Joining a Group, Program, or Activity

Participants want to know what they are signing up for, if it will be worth their time, and if they can feasibly attend. Program and activity flyers, invitations, and other informational materials should include this key information and proactively address potential concerns or barriers. Participants highlighted that they want to know upfront about the focus of the meeting, including the specific skills they might learn or improve and the resources they can access. Helpful supports may include financial resources, mentorship opportunities, individualized support, or links to other community organizations that provide mental health support and social services.

A few participants said they cross-reference multiple sources before choosing to join a new program. Participants might do their own research on the internet, including social media and the CIL’s website; ask friends who have some familiarity with the organization; or talk to staff or other people who attend the program. For this reason, CILs might consider featuring quotes from current consumers in program materials to give potential participants more information about what the group can offer, from a peer’s perspective.

So first of all, before I join an organization, I gather information from different sources so that I know exactly what to expect and be sure if that is what I want, maybe to learn or participate in by joining the group. So, I can go to maybe the website and check people’s reviews or what mainly it is about. I can also talk to people who are in the organization, that can be the staff, or even talking to the other members so that I can compare the information and see if the information is matching, and from there now I can decide if this group will be of help to me.

(Focus group participant, age 23)

I can also talk to other people who are disabled people and learn their experiences, and based on that I can also decide about the organization. (Focus group participant, age 20)

Several participants mentioned that knowing whether the meeting will be virtual or in person helps them to plan around accessibility issues. These youth shared that virtual meetings helped them to connect with others, particularly during the pandemic. Virtual meetings also eliminate transportation issues and minimize accessibility barriers related to attending meetings in person. Providing transportation or sharing transportation options for in-person meetings can make youth’s attendance more feasible. In large service areas where coordinating door-to-door transportation is not possible, making programs available virtually, in addition to in person, would also extend the reach of the program.

A few participants shared they could not join activities, such as swimming at the beach or playing soccer, which made them feel excluded. It is important for organizations to communicate available accommodations that will ensure everyone can access activities.

Incentives to Encourage Youth Attendance

Providing a small incentive, such as a gift card or refreshments, might boost interest. One participant said, “Maybe they can use something like, those who will come will get maybe refreshments or maybe a gift card or something of the sort, that is something that would also encourage me to want to go.” Another participant shared that an organization offered a gift card if group members brought someone new to a meeting. In support of this idea, many participants reported they would be more willing to try a new group if a friend invited them; thus, this could be a good strategy for organizations to consider. Alternatively, organizations could enter first-time attendees into a drawing for a door prize.

Techniques for Sustaining Youth Engagement in Programs

Once participants respond to outreach material, barriers and supports influence their interest and ability to stay involved in programs. Participants described welcoming environments that make it more likely for them to stay engaged.

Barriers Participants Face When Joining New Programs

Participants spoke candidly about the challenges joining new groups can present. One participant reflected, “Trying something new comes with so much anxiety.” Other participants discussed behaviors that make group interactions feel inauthentic or judgmental. One participant mentioned that some groups “lure” people there but have nothing to offer, so it feels like the organization is more motivated by attendance numbers than by offering useful or meaningful content. A few participants also raised confidentiality concerns. These youth did not want organizations to share their contact information without their permission.

Participants emphasized the importance of people accepting them as they are—specifically, that organizations should not expect them to wear certain types of clothing or make financial contributions. “They should just appreciate the fact that you found the confidence to show up,” said one participant. Another individual commented that groups should not expect participants to make a financial contribution, saying, “I don’t think it’s okay to ask people to make a contribution, in terms of money, because some part of the group is okay with it.” Another participant suggested “a light approach is often beneficial, rather than a stern demeanor.”

Several participants shared that experiences of discrimination related to disability and race make returning for a second meeting unlikely.

I was invited to a meeting, an in-person meeting from an online community.… So, when we got [to] the meeting, I experienced some racist behaviors by other disabled people that were White. I kind of felt bad, and at some point, I really wanted to go back home. But since the meeting was for people with disabilities, I just overlooked my skin color and I had to attend it though I was [in] pain inside. (Focus group participant, age 22)

Another thing is being stereotyped and looked as if you’re not up to task ... When you want to provide your contribution to something, they would be like, ‘Oh no, don’t worry ... Let others do it.’ [That’s] something that will break me down, like why can’t I be in this space? Why can’t I be included? (Focus group participant, age 24)

How Organizations Can Create a Welcoming Environment That Prioritizes Value and Respect

Participants emphasized the importance of feeling welcomed, valued, and respected in new groups. They said they notice when people are authentic and ask questions and “actually care” about them. One participant said, “I love to be in a place in which I’m treated like every person—no extra attention, no extra care, but just like, let me feel normal.” Another participant echoed this concept, recommending that organizations “listen to the person behind the disability.”

So, it’s something like the way people treat me, the way they talk to me, the way they refer to me sometimes. And being [among] people that actually care about you is something that matters. So, I feel like any time I sense this particular group of people actually care about who I am and how I am and what I’m going through, if they’re asking me questions … I just get comfortable with them, and I actually want to share more and talk about myself more. (Focus group participant, age 23)

One of the thing[s] I look forward to when joining a new group is the comfortability of being around. Like … being around people that share the same perspective with me, of being in the community, that my opinion is valued and I’m not stereotyped. (Focus group participant, age 24)

A welcoming environment is one that is equitable and free of discrimination. Participants suggested that organizations demonstrate discipline for negative behaviors. “My own opinion is that there should be rules and regulations, and in a situation where anybody breaks it, there should be a punishment for it,” said one participant. “I believe discipline like that will make you want to join the group.” Finally, several participants noted they would like to know how the group will stay in touch, suggesting that organizations should provide weekly or monthly programs to help “stay connected.”

Recommendations for Programs

Participants highlighted several specific unmet needs and suggested areas where they would welcome more guidance and support in reaching their goals. Participants described a variety of programs and activities they would enjoy and appreciate, including those related to employment or transition goals and opportunities to connect with other people with disabilities.

How Organizations Can Address Youths’ Unmet Needs to Help Them Reach Career and Independent Living Goals

Youth need opportunities to learn about employment in various fields. Career exploration touched on architecture, computer programming, entrepreneurship, tailoring, and finding remote work positions. Youth also need support for navigating workplace conflict, such as handling employers’ doubts. “For me, maybe it’s the employers doubt like …Will I achieve this task when I am disabled?” said one participant. “You know like they can’t show it, but you can feel like they’re doubting you.”

Participants expressed enthusiasm for learning about independent living activities, such as housing and personal care, to build confidence and increase their independence. They were eager for opportunities to grow their hobbies, learn new things, and engage in physical exercise. One person said, “Physical activities and exercise can help us with disabilities achieve our mental and physical potential.” Finally, participants described leisurely, fun activities they enjoy with friends, such as watching movies, listening to music, or hanging out by a pool. A blend of instructional and less formal activities would satisfy their desire to learn, practice new skills, and socialize with peers in a relaxed environment. Table 2 contains examples of participants’ interest areas.

Table 2.

Support and Guidance Requested by Out-of-School Youth with Disabilities

Interest area	Examples of Activities
Financial management	Opening bank accounts, paying back loans
Hobbies and interests	Sewing and crocheting, painting, baking, administering first aid, techniques for taking care of babies, watching movies with friends, music, community service projects
Housing assistance	Searching for housing, dealing with landlords, learning about mortgages and insurance
Independent living skills	Completing household tasks, attending to personal hygiene, building confidence interacting with others
Physical activities	Bowling, exercise classes, gardening, team sports, dancing, swimming
Postsecondary education	Applying for scholarships

How Organizations can Create Spaces for Youth with Disabilities to Connect with Others

Youth emphasized the importance of socializing with peers to share experiences and support, as well as connecting with mentors with disabilities who already have college or work experience. Having a place to discuss their mental health and how they are “faring or surviving” was important to participants. They indicated that they appreciated having a place to discuss their mental health. One participant put this plainly, saying “It’s very difficult to be a disabled person.” A few participants mentioned finding supportive virtual groups during the pandemic, which one participant described as “quite peaceful having such a space to talk and then just have [a] lot of, [or] should I say, most of your problems talked about, and then personally I felt relieved.” Support from other people with disabilities can help youth tackle problems.

When you talk to other people, you get to know how they deal with challenges that we people who live with disabilities face, challenges such as stigmatization, negative attitude, and so on and so forth. So maybe you can adapt a strategy of your friend and maybe it can be helpful, but for you to adapt it, you have to get it from a friend, and for you to get it, you have to be in a group somewhere you can talk. (Focus group participant, age 24)

Connecting to other people with disabilities helped participants feel less isolated, cultivate self-advocacy skills, and share and learn coping strategies. For example, one participant said, “I would say I would really lack the skill of confidence and also skills on how to stop overthinking. Most times when I get some racist comments about me, I often get depressed.” Youth wanted opportunities to learn from peers and also time to share their own experiences with others. Group facilitators can ensure each participant can speak about their experience. One person noted, “I like groups where people are really willing to share their experiences, not just one or two people speaking and others just listening.”

A designated mentor could be a valuable resource to help keep youth motivated and moving toward goals. One participant explained, “As a disabled person, you get a lot of discouragement, and you definitely need someone to back you up, and you need a backbone.” Another person said the more one-on-one the mentoring relationships could be, the better:

At this stage, we need a lot of guidance in how to go about with our life. So, I would love mentor attachments in which you will have a personal mentor you can go to…. Maybe just like two people per mentor would go a long way in order for the mentor to pay attention to our need.

Another person added,

If I have maybe certain goals about my career, my education … I need someone who has experience in the same field and maybe they will tell me more about it. … And above all, I think most important is support. You just need someone who will be there for you and telling you this is the right thing for you and encouraging you. (Focus group participant, age 23)

Discussion

The purpose of this article was to learn from youth who come from minority backgrounds about ways CILs and other organizations can improve their outreach, engagement, and programs. This article contributes to the evidence on effective strategies to engage and support youth from minority backgrounds by conducting focus groups with members of this population who shared their perspectives and recommendations. Focus group participants shared observations and suggestions organized by three primary themes presented in this manuscript—effective outreach, sustaining engagement, and program recommendations.

Practice Implications for Effective Outreach

Focus group participants indicated they rely on social media to learn about new opportunities and to cultivate connections. Other literature has underscored the potential for social media to broaden social networks among people with disabilities and provide a key channel for accessing information (Sweet et al., 2020). It is important to consider providing multiple forms of outreach to include those who cannot use social media because of financial constraints or lack of technical equipment and digital connection to do so (Kent, 2019). Despite finding out about the focus group through CILs’ own social media accounts, most focus group participants had never participated in CIL programs. Two key factors are underscored by this finding. First, reaching individuals with announcements or invitations does not guarantee capturing their interest or making them feel welcome. Organizations might ensure their social media and websites include clear information about groups and activities, including how youth can speak to someone to learn more. Organizations can be intentional about providing key information in an accessible way and setting a warm, inviting tone. Other literature on hard-to-reach youth supports these strategies: youth prefer brief, less formal, and visually appealing content with more colors, graphics, and quotes from participants with photographs (Van Drunen & Dworsky, 2022). Organizations can partner with youth to support relevant, effective communications (Van Drunen & Dworsky, 2022). Second, CILs have a broader social media reach, beyond their established consumer base, which they can draw on to reach more youth. Social media is also an opportunity for engagement through interactions on posts. Organizations could ask people to comment with a fun fact or answer a question (for example, what is something good that you have watched lately?) to start building connections with users across the social media network. To expand their reach, organizations can make posts accessible to community partners and encourage consumers to bring a friend to a new program.

For effective outreach to youth, organizations might share clear information about programs on social media platforms, through organization websites, and with community partners. Accessible materials can be critical for anyone using adaptive technology. To combat the digital divide and ensure equitable access to outreach material, organizations might also want to use low-technology strategies, such as printed materials and recorded messages, to share information about upcoming activities that interested youth can access by telephone. Tips to improve outreach materials include centering the content, describing the structure and purpose of meetings, listing program activities, highlighting transportation options and available meeting accommodations, being culturally sensitive, and, when possible, offering information in multiple languages. It can also be helpful to include specific expectations of participants (such as any program costs for attending or attire requirements) and to note any incentives for participation (such as refreshments, gift cards, or drawings) in outreach information inviting youth to an event.

Practice Implications for Sustaining Engagement

Participants often decided whether to stay involved in a program based on crucial first impressions. Literature on youth in foster care also highlights the importance of first impressions as an opportunity for organizations to demonstrate authenticity and establish a nonjudgmental, supportive environment (Salazar et al., 2021). Program staff can provide a warm welcome to the group by asking questions to learn more about attendees, thanking them for attending, and accepting them as they are, without judgment. In addition, focus group participants emphasized the importance of safe, fair, and respectful environments, which the literature also identifies as essential for youth program participants (Gliske et al., 2021).

Organizations can show their dedication to creating authentic and discrimination-free environments by working with people who use their services to establish a code of conduct and actively enforcing it (Drawing Change, 2019; Hubbard, 2015; Youth Out-RIGHT, n.d.). Engaging young adults to co-create program ground rules can build consensus on positive behaviors that foster a welcoming and inclusive environment and identify negative behaviors that the organization will not tolerate in the group. As part of the ground rules or code of conduct, programs can also include a statement of confidentiality to protect participants’ contact information. Organizations can display this code of conduct on their website and include a link to this landing page in outreach materials. Staff can reference these ground rules at the beginning of meetings or activities to help ensure all participants feel safe and welcomed.

Practice Implications for Program Recommendations

Participants wanted access to programs that help them learn, build skills to support living independently, connect with peers, try fun new things, and have a dedicated mentor to help them move towards their self-defined goals. Inviting youth to shape program agendas and prioritizing youth’s preferences when planning activity structure and content ensures organizations present useful information that is well-suited for youth participants (Powers et al., 2018). Youth involvement in program decision-making also contributes to leadership skills, enhanced problem-solving, and higher motivation to participate (Akiva et al., 2014; Gliske et al., 2021). Organizations can incorporate youth feedback and strive to offer a blend of instruction, social support and time for peers to connect, and informal, recreational experiences. Program staff can build in opportunities to actively listen to their consumers’ preferences, design programs based on their interests, and recruit racially and ethnically diverse mentors with disabilities who can provide specific expertise and motivate their mentees to achieve their goals. Mentoring programs that match mentors and mentees based on similar backgrounds and life experiences promote youth learning and confidence and help mentees feel more comfortable asking for guidance (Lindsay et al., 2019; Powers et al., 2018). Furthermore, the opportunity to build relationships with mentors and connect with peers can increase youth buy-in to programs (Powers et al., 2018).

Program staff and mentors could enhance youth’s ease and comfort participating in planning by offering informal activities to build trust and rapport between youth and staff or mentors, offering culturally responsive and flexible meetings with an option for youth to participate virtually when that is more convenient, as well as allowing for different, alternative communication modes (Hagner et al., 2014). Furthermore, person-centered planning must be culturally relevant, recognizing cultural and linguistic factors that encompass language and communication, values and beliefs, individualism and collectivism, customs and rituals, and relationships to authority figures (Tondora et al., 2020).

Organizations can design culturally relevant and focused programs based on participants’ independent living interests and goals to address areas such as managing personal finances, exploring careers, completing household tasks, and navigating housing issues. Offering avenues for youth to share their interests can help organizations plan activities that enable youth to learn new skills or try hobbies. Organizations can also work with youth to establish social support groups for youth from minority backgrounds with disabilities to discuss struggles related to their identities and disabilities, where all participants have an opportunity to share experiences and strategies to cope and build confidence. Support groups can also include information about accessing mental health services. Finally, organizations can create mentorship programs for participants to access individualized support.

Strengths and Limitations

A common limitation in research is a failure to permeate the boundaries of academic scholarship and community level translation. Community partners often help recruit for research studies without the benefit of learning research findings (Logan et al., 2008). Inclusive, community-based participatory research methods strengthened this study and enabled the team to reach youth who identify as people of color, a historically hard-to-reach population. Partner CILs advised the research team on appropriate outreach materials and incentives, which included $100 gift cards, and distributed study information through their networks. Members of the research team and partners reviewing materials have disabilities and informed the study design. Including people with disabilities in empowering roles generates actionable findings (Ducket & Pratt, 2001; Niesz et al., 2008). The team also used a variety of methods, including phone calls, text messages, and emails, to reach youth and accommodate their communication preferences. As a result, more than 500 youth responded to the screening survey. The research team shared findings with participants and partners through accessible practice briefs and a webinar featuring three youth focus group participants.

One limitation to these findings is that focus groups had unbalanced representation across age, gender, race, and ethnic groups. Though the study aimed to recruit youth between the ages of 14 to 24 (inclusive), the screening survey did not collect information on exact age. As a result, all respondents the research team reached out to enroll were between the ages of 18 and 24; findings might not be generalizable for youth ages 14 to 17. In addition, the research team did not include gender as a question in the screening survey, so it could not accurately identify the gender of a potential participant until the analyst called the respondent. The three focus groups included nine female participants, 17 male participants, and no nonbinary or gender-fluid participants. Thus, results might not be indicative of transgender and/or nonbinary youth. Though the screening survey did include race and ethnic group questions, the team received more submissions and higher response rates from youth who identified as Black or African American than from other minority backgrounds, highlighting a need for future research to understand unique barriers and opportunities to reaching and engaging youth from less represented race and ethnic groups more effectively.

To limit burden on participants in the screening process, researchers did not collect detailed demographic data on participants beyond age, location, disability status, high school or GED status, race, gender, and familiarity with CILs or CIL programs and activities. As a result, researchers were not able to discuss any differences between respondents as they related to disability type or other demographics.

Conclusions

Focus group participants shared important lessons for CILs and other organizations to conduct outreach, promote engagement, and customize programs for youth who identify as people of color. Youth emphasized the importance of feeling welcomed and integrated in programs that centered their individual interests and goals. CILs and other organizations might consider two broader activities to improve their connections to this population. First, they could host focus groups to better understand the needs and interests of youth who identify as people of color and who live in their service areas. Second, CILs might partner with youth to co-create programs that advance the goals of both CILs and participating youth.

Appendix A

Online Screening Questions

1. What is your age?

1. 13 years old or younger → Respondent does not qualify

2. Between 14 and 24 years old → Respondent moves on to the next screening question

3. 25 years old or older → Respondent does not qualify

2. What area do you currently live in?

1. New York City → Respondent moves on to the next screening question

2. Illinois → Respondent moves on to the next screening question

3. South Carolina → Respondent moves on to the next screening question

4. Other → Respondent does not qualify

3. Do you have a disability?

1. Yes → Respondent moves on to the next screening question

2. No → Respondent does not qualify

4. What is your race or ethnicity? Select all that apply.

1. White → Respondent does not qualify if this option is the only one selected

2. Black or African American → Respondent moves on to the next screening question

3. American Indian or Alaska Native → Respondent moves on to the next screening question

4. Asian → Respondent moves on to the next screening question

5. Native Hawaiian or Other Pacific Islander → Respondent moves on to the next screening question

6. Hispanic (including persons of Mexican, Puerto Rican, Cuban, and Central or South American origin) → Respondent moves on to the next screening question

5. Are you currently a student?

1. Yes → Respondent does not qualify

2. No → Respondent qualifies

Appendix B

Focus Group Guide

Introduction

• (Icebreaker) So to start, we’d like to ask everyone to introduce themselves by telling us your first name and how you found out about this focus group.

  • Probe: Did a friend tell you, or did you learn about it another way?

Consumer experience with Centers for Independent Living and community programs

• Can you tell us how you learned about the Center for Independent Living?

  • For those of you who have heard about Centers for Independent Living, can you describe, in your own words, their purpose?
• Can you talk about how you learn about other groups or programs in your community?

  • Probe: Can you share how you hear about most programs and services? For example, do you hear about services from friends, professionals (like vocational rehabilitation or vocational rehabilitation counselors), social media, or some other way?
• What things make getting involved with new groups or programs easier for you?

  • Probe: What makes you comfortable?
  • Probe: What are some things that may make you feel uncomfortable or unwelcome?
• Can you give an example of something a Center for Independent Living has done to make you feel welcome and like you wanted to stay involved?

  • Probe: Do you think the Center for Independent Living does a good job serving youth from minority backgrounds? Why? If not, what could they do better?
  • Probe: Do you have friends who don’t participate in the Center for Independent Living? Why do you think they don’t participate?

• Can you give an example of something another group or program has done to make you feel welcome and like you wanted to stay involved?

• Can you talk about how a Center for Independent Living, or other group or program, has helped you?

  • Probe: Have you had a chance to learn something, meet new people, or try something new?

Consumer needs and preferences

• Please share any ideas about what kind of program or service would be most helpful to you right now.

  • Probe: What goals do you need some support reaching?
  • Probe: Are there skills you would like to work on building?
  • Probe: Are there tasks that you want to get more comfortable doing to build confidence?
  • Probe: Do you feel like you encounter some barriers that other people do not understand? If so, who or what do you think could help you overcome those barriers?

Wrap up

• Is there anything else you’d like to share that we haven’t talked about yet?

  • Probe: Do you have any advice for organizations that want youth to participate and that want to support youth with disabilities from minority backgrounds?

Conclusion

Thank you again for sharing your perspective and suggestions with us today. We will use the important things you shared to help Centers for Independent Living and other organizations work effectively with minority youth with disabilities. You will receive a $100 gift card as a thank you. That will come to you in an email, from Mathematica, in a couple of weeks. If email isn’t convenient for you, please let us know and we can arrange to send it another way.

Thank you again, and I hope you have a great day.