Contributions of Community Organizations to Personal Outcomes for People with Intellectual and Developmental Disabilities: A Study of Special Olympics Program Participation

Prohn, Seb M.; Dinora, Parthenia; and Diggs Brody, Kayla (2023) “Contributions of Community Organizations to Personal Outcomes for People with Intellectual and Developmental Disabilities: A Study of Special Olympics Program Participation,” Developmental Disabilities Network Journal: Vol. 3: Iss. 2, Article 2.

Contributions of Community Organizations to Personal Outcomes for People with Intellectual and Developmental Disabilities: A Study of Special Olympics Program Participation PDF File

Introduction

Many community organizations, service agencies, and other providers constitute the intellectual and developmental disability (I/DD) service system. Each of these groups contribute to health and wellness across the lifespan for people with I/DD and collectively influence community participation and other personal outcomes. State developmental disability service agencies develop administrative practices, processes, and services to promote positive personal outcomes for people with I/DD. Community organizations implement policies at the ground level to facilitate people’s engagement in their community. Federal regulations have also had a significant influence on opportunities for people with I/DD. For example, the Medicaid Home and Community-Based Services (HCBS) Final Rule (CMS 2249-F/2296-F) requires state agencies to employ strategies that ensure people with I/DD experience dignity, have access to the greater community, and are given opportunities to make life choices.

Aligning the goals and activities of organizations and agencies that support people with I/DD can help reduce barriers that isolate people, exclude them from opportunities, and prevent positive personal outcomes. For example, interagency coordination between Developmental Disabilities (DD), Vocational Rehabilitation, and Medicaid agencies is an evidence-based predictor of improved postschool outcomes for people with disabilities (Rowe et al., 2015). Schalock and Verdugo (2012) proposed that by aligning values, resources, and strategies, DD agencies and community organizations can more effectively and efficiently achieve personal outcomes for people with I/DD. Evidence for this idea has been supported over recent years.

The California Employment Consortium for Youth with I/DD (CECY) relied on collaboration between agencies and organizations, among other stakeholders, to develop policies and capacities that would increase likelihood of community employment for youth with I/DD (Raynor et al., 2017). Religious organizations that collaborate with state agencies have been found to improve opportunities for people with I/DD who live in rural regions by providing wide ranging resources along with social and employment supports (Carter et al., 2017; Stewart-Ginsburg & Kwiatek, 2020). Agency and organization alignment can also support improved health outcomes for people with I/DD. For example, when comparing Colorado’s Cross-Systems Care Integration—a collaboration between agencies, healthcare providers, and community support—with other models, it was found that there was less weight gain and fewer cases of high blood pressure and hyperlipidemia among adults with I/DD (Wilson et al., 2020).

Special Olympics (SO), an international organization with a presence in all 50 states and over 200 countries and jurisdictions (Special Olympics, 2018), has sought to improve health, wellness, social participation, and leadership among people with I/DD since the late 1960s. Current initiatives include providing health screenings to prevent disease progression and to improve health. Studies show that SO fitness models and programs reduce weight and blood pressure, especially for people with I/DD who are at greatest risk for poor health outcomes (Rubinstein et al., 2020). Health profile scores consisting of body mass index (BMI), blood pressure, fitness test results, and physical activity, have been found to be better for people with I/DD who participate in SO compared to those who do not (Walsh et al., 2018). A systematic review indicated that participation in SO activities most often resulted in improved social skills and expanded social networks, rather than changes in physical or psychological health (Tint et al., 2017).

It is less understood how participation in SO contributes to personal outcomes for people with I/DD. To examine this, we used Virginia’s data to explore two research questions. First, among users of Medicaid I/DD home- and community-based services, what factors predict current SO participation? Second, compared with people who formerly participated in SO or never participated in SO, do current SO participants experience different levels of personal outcomes, including health, community and social participation, and paid community employment?

Methods

All methods described in the following section were reviewed and approved by the Virginia Commonwealth University’s Institutional Review Board.

Data Source

This study used Virginia’s data from the 2019-2020 National Core Indicators In-Person Survey (NCI-IPS). The NCI-IPS is a nationally validated survey that is used to assess quality and outcomes associated with Medicaid I/DD HCBS waiver services and, as of 2021, is administered in 46 states and the District of Columbia. The NCI-IPS is comprised of three parts: (1) Background section, (2) Part I, and (3) Part II. The background section of the NCI-IPS is completed by a case manager or support coordinator and contains personal data about a person’s health status. The remainder of the NCI-IPS is completed as a direct, in-person interview with the person with I/DD who uses at least one public I/DD service in addition to case management. Part I of the in-person survey requires a direct response from the person with I/DD and in Part II proxy responses are allowed. The NCI-IPS has been identified as an administrative dataset that can be used to monitor predictors of health and wellness for people with I/DD (Fox et al., 2015). All three parts of the NCI-IPS have been used together with other tools to develop an understanding of the intersection of I/DD and health.

Variables

Special Olympics Participation

Each year, states participating in the NCI project have the opportunity to add a limited number of items to the NCI-IPS. In collaboration with SO, a request was made to the Virginia’s DD agency to add, “Have you participated in Special Olympics in the past year?” Response options were: (a) No, I have never participated/I was never a Special Olympics Athlete; (b) No, but I participated in the past/I was a Special Olympics Athlete; (c) Yes; or (d) Don’t know.

Personal Characteristics

Personal characteristics were similar to those selected by Robinson et al. (2018) to predict frequency participation in SO. Variables included age, gender, race, BMI, and mobility (moves independently without aids; moves independently with aids; non-ambulatory). People who reported needing “some” or “extensive” supports to manage self-injurious, disruptive, or destructive behaviors were categorized as requiring behavioral supports. The last personal characteristic used was health conditions. The NCI-IPS asks whether individuals have the presence of 10 different health conditions, including diabetes, high cholesterol, high blood pressure, etc. By summing health conditions, we created a total health conditions score (range: 0-10).

Physical Health

NCI-IPS also includes measures for subjective health and frequency of physical activity. The person/proxy described health using a subjective scale (1 = poor to 4 = excellent). Physical activity was described as moderate exercise of 10 minutes or longer. Examples included dancing, biking, swimming, among others. Responses were provided using a frequency scale (range: 1 = no physical activity in a week to 4 = five or more times per week).

Community and Social Participation

Similar to the physical activity item, the NCI-IPS assesses community participation through frequency of participation in activities such as entertainment in the community or eating out at restaurants and coffee shops (1 = 0 times in the previous month; 4 = 5+ times in the previous month). Community participation is similar to integration or sharing community spaces, but other items capture social components of community inclusion such as participating as a member of a community group (1 = no; 2 = yes), having a best friend (1 = no; 2 = yes) or expanded friendship. Giordano et al. (2016) described limited friendship as only having relationships with family and paid support staff while expanded friendships included those beyond family and staff, such as other people within their community. The associated NCI item for this concept is “Do you have friends you like to talk or do things with?” (1 = no; 2 = yes, all friends are staff or family; 3 = yes, has friends who are not staff or family).

Community Employment

Community employment combined those who had paid employment in a community-based setting and either worked independently or as part of a small group in an integrated setting. Response options were binary (1 = no, 2 = yes).

Participants

The current sample consists of 512 adults with I/DD who received Medicaid home- and community-based I/DD waiver services in Virginia and were interviewed between October 2019 and March 2020. The average age was 43 years (SD = 15.29; range = 18-85 years). Participants averaged slightly more than one health condition per person (M = 1.31; SD = 1.27). The average BMI was 28.23 (SD = 7.41), which is considered by the Centers for Disease Control and Prevention (CDC) as “overweight.” Thirty-eight percent of the sample was “overweight” and 30% were in the “normal” BMI category (CDC, 2018). Other sample characteristics are shown in Table 1.

Analysis

Our first research question examined the factors that predict program participation in SO. When looking at HCBS waiver participation, Harrington and Kang (2016) found that people with I/DD from historically marginalized racial and ethnic groups were less likely to access Medicaid waiver support than their White peers. Regarding SO program participation, SO athletes have been shown to be younger, mostly White, and more mobile than those not accessing SO (Ausderau et al., 2019). In our study, a relationship between current SO participation and age and mobility was established, but we did not find race or sex to be predictive. Our results support Vancampfort et al.’s (2022) systematic review findings that older adults with less mobility had lower levels of physical activity when compared to their peers. We found that older adults were less likely to participate in SO, which is consistent with Crawford et al.’s (2015), who found that SO athletes were significantly younger than people who did not participate in any sports programs. Finally, our results related to personal characteristics were similar to Robinson’s (2018) in that behavior support needs and health conditions were not predictive of SO participation. More than half of the sample had, at some point in their lives, participated in SO and the fact that their participation was neither contingent nor disproportionate based upon sex, race, health conditions, or behavior is a significant finding.

In our analysis, health outcomes related to SO participation were mixed, which is a consistent finding in previous literature (see Crawford et al., 2015; Tint et al., 2017). People with I/DD, including current and former SO participants and those who had never participated in SO, had statistically equal rates of high blood pressure, high cholesterol, and diabetes. Current SO participants reported better health and more rigorous physical activity, the latter being a particularly important finding given that people with I/DD typically have less than half the amount of physical activity reported by people without disabilities (Stancliffe & Anderson, 2017). This suggests that participating in SO may provide more opportunities for physical activity or may motivate SO participants to engage in physical activity regularly. When examining about 100 SO athletes and 50 people with I/DD who did not participate in SO, Walsh et al. (2018) also found that active SO participants reported more rigorous physical activity and had better overall health.

Relationships between physical activity and community participation have been previously reported (Hsieh et al., 2015; Stancliffe & Anderson, 2017). Our results reinforced these finding by illustrating that current SO involvement improved physical activity and certain types of community participation, such as involvement in community organizations and entertainment activities in the community. The community organizations item did not specify which or how many community organizations respondents participated in, including SO.

Community and social participation are different constructs that are too often conflated. Community participation is related to having access to and physical integration in community activities or facilities. Community access and integration are necessary steps for social participation across various contexts (O’Brien & Blessing, 2011). Tint et al. (2017) found SO participation to be related to community participation, but most often SO supported social skill development and social participation, which is more related to interacting with others and forming relationships (Chang & Coster, 2014). The development of social skills, adherence to training regiments, and reductions in maladaptive behaviors (Özer et al., 2012) are previously reported gains associated with SO that could lead to more opportunities for community participation, including paid community employment as reported in this study. SO athletes from five different countries reported that SO was directly related to employment opportunities because it built social capital and created connections with employers through expanded social networks (McConkey et al., 2013). While we found that current SO participants had higher rates of community employment, we, like Crawford et al. (2015) failed to detect differences in the composition of social networks (i.e., expanded friendships) or improved likelihood for having a best friend.

Overall, the examination of the selected outcomes in this study related to health, community and social participation, and paid community employment, indicated that SO participation supports I/DD system efforts to improve the lives of people with I/DD. This suggests that community organizations can help I/DD providers and service agencies improve outcomes for people with disabilities. I/DD system providers and agencies should make intentional efforts to connect with community organizations, such as SO, to provide opportunities for people to participate in activities that could lead to greater health outcomes, community participation, and other positive impacts on personal outcomes. In addition, if personal outcomes are included in a person’s individualized service plan (ISP) or within organizational objectives or performance benchmarks, participation in community organizations such as SO, may help people and providers achieve desired goals.

Limitations and Future Research

Though results from the current study were promising, they were not without limitations. First, while we were able to assess whether or not people participated in SO, the type and degree of participation was unknown. Highly active and less active SO athletes may be relatively distinct groups (Robinson et al., 2018). Psychological, social, and physiological outcomes related to SO improve as SO involvement increases, such as attendance in more sessions or more years of SO participation (Crawford et al., 2015; Marks et al., 2010; Weiss & Bebko, 2008). This information was unavailable in the NCI-IPS dataset.

Data used for this study were collected in 2019-2020. In a typical year, Virginia collects NCI-IPS data from over 800 participants. Data collection ended in March 2020 in accordance with shutdown guidelines during the emerging COVID-19 public health crisis. The resulting dataset was larger than most used in other SO studies, but smaller than what had been previously collected (N = 512). Recruitment for participation in the NCI-IPS is completed via phone, which has its own set of limitations. For example, phone numbers are sometimes incorrect, potential participants do not answer phone calls from unknown numbers, and numerous call attempts are left unanswered. Additionally, participation in NCI-IPS in Virginia is voluntary, unlike in other states where it is required in quality assurance initiatives linked to the receipt of Medicaid Home- and Community-Based waiver services.

Two key findings of this study were that mobility support needs were related to current SO participation and that SO participation was related to physical activity. However, Stancliffe and Anderson (2017), using NCI-IPS data from multiple states, reported that mobility supports were related to people with I/DD achieving recommended amounts of physical activity. Future research should further disambiguate SO’s role in the relationship between mobility and physical activity outcomes.

Conclusion

State I/DD systems recognize that community organizations outside of formal service systems influence people’s lives and outcomes, but these factors are not routinely measured. Incorporating items about personal outcome influencers (i.e., SO, churches, social groups) into existing systematic data collection efforts such as the NCI-IPS, can provide actionable data to evaluate the impact of these programs on outcomes for people with I/DD. This data can also provide an evidence base to inform policy, practice, and service planning.

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