Originally published in 2015 as Engage Brief 2.
As state and federal policy makers and Community Service Providers work to refine the concept of Community Life Engagement, they are able to draw upon multiple, public, national data sources. These include:
This section provides an introduction to these data sources. It examines emerging Community Life Engagement trends shown in each source, as well as the implications for developing a better understanding of Community Life Engagement based on how it is currently being classified and measured.
ICI’s National Survey on Day and Employment Outcomes ICI’s National Survey on Day and Employment Outcomes is part of a longitudinal study commissioned by the Administration on Intellectual and Developmental Disabilities to analyze day and employment service trends. The survey is conducted annually by ICI as part of the Access to Integrated Employment project
The survey categorizes day and employment supports into four quadrants, based on whether they are work or non-work and community- or facility-based. States report based on the service a person participates in, and not their actual activity during the day.
The data primarily come from state billing records, and states’ definition and implementation of service categories vary. For the purposes of this brief, we consider Community-Based Non-Work (CBNW) services the closest equivalent to Community Life Engagement activities, as they both describe community-based service categories where the participant does not engage in paid work. For FY2013, data was available for 45 states.
Key Findings Community-Based Non-Work (CBNW) services are increasing, but there is a lack of clarity about how states define the service category.
In the National Survey on Day and Employment Outcomes, the category of CBNW refers to programs where individuals engage in recreational, skill training, or volunteer activities in settings where most people do not have disabilities. These activities may typically be referred to as community integration and/or community participation services.
The number of states reporting the provision of CBNW has grown from 18 in FY1996 to 30 in FY2013. Nationally, reported participation in CBNW has grown steadily for states that report it as a service, from 18.7% (n=29) in FY1999 to 45.8% (n=29) in FY2013 (Butterworth et al., 2015) (Figure 1). (Insert figure 1)
While some states report service requirements for how much time CBNW participants spend in the community, it is possible that in some cases states have reclassified services from facility-based to community-based as the emphasis on community participation grows, with substantial time still spent in facility-based settings. The trend toward CBNW services also raises concerns about the clarity of the service system’s goals for community employment (Butterworth et al., 2015).
ICI’s National Survey of Community Rehabilitation Providers ICI’s National Survey of Community Rehabilitation Providers (CRPs), funded by the Administration on Developmental Disabilities and the National Institute for Disability and Rehabilitation Research, offers findings on individuals with all disabilities who are served in employment and non-work settings by community rehabilitation providers (CRPs). This survey provides a longitudinal description of CRPs by collecting data on agency characteristics and employment outcomes.
The CRP survey defines CBNW as services where people with disabilities spend the majority of their day in the community, in places where most people do not have disabilities. The primary focus may include general community activities, volunteer experiences, recreation and leisure, improving psychosocial skills, or engaging in activities of daily living. As in the National Survey on Day and Employment Outcomes, respondents are reporting on the service category in which an individual participates.
Key finding: While facility-based non-work continues to be the dominant non-work service reported for individuals, CBNW services showed the greatest reported increase.
As Figure 2 shows, there was significant growth in all non-work participation for people with IDD between 2002–2003 and 2010–2011 (33% to 43%). Facility-based non-work remains the most common type of non-work (26%) compared to CBNW (16%) for individuals with IDD. However, participation in CBNW services showed the greatest reported increase at that time. (Insert figure 2)
National Core Indicators National Core Indicators (NCI) is a collaborative effort between the National Association of State Directors of Developmental Disabilities Services (NASDDDS)and the Human Services Research Institute (HSRI). The purpose of the project, which began in 1997, is to support NASDDDS member agencies to gather a standard set of performance and outcome measures to track their own performance over time, to compare results across states, and to establish national benchmarks. Thirty-nine states are planning to contribute data in 2015. NCI reports data on several individual indicators, including Health, Wellness, Safety, Service Coordination, Work, and Community Inclusion.
The survey captures Community Life Engagement data in two domains: 1) the Work domain; and the 2) Community Inclusion domain. The Work domain includes questions about whether an individual participated in a paid job in a community-based setting, an unpaid activity in a community-based setting, a paid job in a facility- based setting, or an unpaid activity in a facility-based setting during the most recent typical two-week period. The Community Inclusion domain includes questions about whether individuals have engaged in community activities over the past month, and if so, how often. These activities include going out for entertainment, exercise, errands, religious services, shopping, and vacations.
Key findings: One quarter of individuals report participation in daily, unpaid community activities, but there is limited information on how that translates to quality Community Life Engagement. NCI’s work indicator data shows that in 2013–2014, 25% of respondents reported participating in a daily unpaid activity in a community-based setting (Figure 3). Seventy-two percent of this sub-group received supports or public funds to participate in these activities. Over half of the individuals (59%) reported participating primarily as part of a group of people with disabilities. (Insert figure 3)
NCI’s community inclusion data suggests that individuals are participating in a wide range of community activities, but to what extent the individual is fully engaged in their community during the activity is less fully explored.
This brief offers an introduction to the three main sources of data on Community Life Engagement for individuals with IDD. Both the National Survey on Day and Employment Outcomes and the National Survey of Community Rehabilitation Providers suggest a growing emphasis on Community Life Engagement services. National Core Indicator data emphasize outcomes over services, and provide a window into where people are spending time and how much of that time is in integrated settings. Yet there is limited information from any of these sources on how time in the community is being used, and the extent to which the person is fully engaged and integrated in activities of their choosing.
It is worth noting that the CRP survey indicates a considerably lower rate of participation in Community-Based Non-Work (16%) than does the survey of state agencies (46%). The NCI figure (25%) falls in between the two.
CRPs are more likely to know which individuals actually spend their time in community settings, versus those who are simply placed in that service category; likewise, the NCI data may be more directly reflective of what individuals are actually doing with their day.
This disparity raises concerns about how state agencies are defining and categorizing services, suggesting that some individuals in the CBNW category may not be spending the majority of their time in community settings. There is a limited amount of data on the structure, activities, and outcomes of this service, and states have not established clear service expectations or quality- assurance strategies (Sulewski, Butterworth, & Gilmore, 2008; Sulewski, 2010).
Examining the data presented in this brief is a step towards a better understanding of Community Life Engagement strategies. Despite some differences, each data source indicates that Community Life Engagement supports are rapidly expanding to meet the increasing demands. Moreover, the differences between the data sources indicate the limitations of our current understanding of Community Life Engagement supports and where there is need for more clarity.
This section offers a more detailed introduction to CLE and what is meant by the term. An overview of data sources for CLE offer both state agency administrators and providers examples of how it is currently being measured and classified. The Four Guideposts for CLE presents research findings on essential principles in the delivery of high quality day services and supports that lead to meaningful outcomes.
Use the sidebar on the left to access the introductory materials.
Originally published in 2016 as Engage Brief 3.
Community Life Engagement refers to supporting people with intellectual and developmental disabilities (IDD) to access and participate in their communities outside of employment as part of a meaningful day. States and providers report growing numbers of individuals with IDD in Community Life Engagement, yet the role of services related to engagement and participation in community life has to date been largely undefined.
Furthermore, the Department of Justice’s guidance around the provision of day and employment supports in integrated settings (U.S. Department of Justice, 2014; United States v. State of Rhode Island, 2014) has illustrated the need to define and provide high-quality Community Life Engagement supports. Placing additional pressure on states and providers, the Center for Medicare and Medicaid Services released new rules that defined, described, and aligned home and community-based setting requirements specifying maximum opportunities in the most integrated settings (Center for Medicaid and Medicaid Services, 2014).
The purpose of this section is to:
Present findings from 13 expert interviews regarding essential elements of high-quality Community Life Engagement, organized into four guideposts.
Consider these guideposts as a set of key principles states and providers can use to move their Community Life Engagement efforts forward.
The information that developed the guideposts came from two sources: expert interviews and case studies.
A series of 45- to 90-minute semi-structured telephone interviews with experts in the field of Community Life Engagement were conducted. Thirteen experts were chosen based on their level of expertise and diversity of perspectives. They included researchers, state and local policymakers, service provider administrators, self-advocates with IDD, and family members. Topics covered included the goals of Community Life Engagement, evidence of effective implementation of CLE, barriers encountered and strategies used, and the role of CLE as a support to other outcomes, including employment.
Case studies of three service providers with a focus on high-quality Community Life Engagement supports were also conducted. The three service providers were selected from 38 initial nominees based on a number of factors, including number of individuals served, geographic location, quality of CLE services, and interest in participating in the research study. Across the three locations, the project team interviewed a total of 51 individuals: 23 provider administrators, managers, and direct support staff; 7 community partners; 16 individuals with IDD; and 5 family members.
Site visits were conducted at three locations:
WorkLink, a small San Francisco-based provider of day and employment supports to 38 individuals
LOQW, a larger provider of day and employment supports (600 individuals served) located in Northeast Missouri
KFI, a Maine-based provider of residential, day, and employment supports to 66 individuals
Community Life Engagement currently represents a wide range of activities and variable implementation, and is delivered without consistent guidelines. The desire to provide individualized supports is often counterbalanced by structural and budgetary constraints, resulting in varied levels of individualization, choice of activities, and hours of support offered. The relationship between Community Life Engagement and employment remains inconsistent, with some individuals receiving both work and Community Life Engagement supports, but more often Community Life Engagement serving as a substitute for employment. These guideposts establish a set of quality indicators as states and providers focus their change efforts around Community Life Engagement.
Community Life Engagement supports should be tailored to the interests and needs of each unique person. In order to be individualized, supports must:
Show understanding of personal preferences, goals and skills Regardless of the process used to uncover interests and passions, the goal should always be the same: to identify and pursue activities that appeal to the individual and\/or support their longer-term goals. Furthermore, as interests are pursued, professionals must consider each person’s unique support needs to ensure success. In contrast to this individualized approach are, as one expert put it, “group models [that] emphasize general ideas about what outsiders feel everyone with disabilities should be doing.”
Emphasize person-centered planning and discovery Experts agreed that providers must take the time to get to know the individual through some form of person-centered planning or discovery, whether formal or informal. This includes allowing time for an investigative period to uncover the most accurate and detailed information.
While some experts preferred formal plans, others warned not to overcomplicate the process of developing goals. Community Life Engagement supports can also provide an excellent opportunity to determine interests and skills for employment and for networking toward finding jobs.
Consider creative grouping, staffing, and scheduling One often-noted challenge is providing individualized supports when existing funding is based on group staffing ratios. Experts agreed that many providers do manage to individualize supports despite this constraint. To do this, providers use strategies including creative and purposeful grouping of individuals; careful attention to scheduling, logistics, and staff communication; redefining staff roles to include community facilitation and to encourage natural supports; and accessing, braiding, or blending funding resources.
In order to promote community membership and contribution, supports must: Start with inclusive settings and activities The starting point for promoting community membership is that individuals are being supported “out in the community [in activities that] provide opportunities for interaction with community members.” Experts agreed that high-quality implementation means supporting people “in an inclusive environment…in our community where adults would be…learning meaningful skills in the community, in inclusive and integrated settings with people without disabilities.”
Accessing inclusive opportunities often involves service providers partnering with other local, non-disability-specific organizations to identify community resources and to generate new community-based options. Experts noted the value of fully inclusive settings, not only for the individual with a disability, but also for the larger community.
Ensure staff presence does not limit connections with other community members Another factor in increasing community connections is ensuring staff presence does not interfere with developing relationships with community members. Experts described the need to “[train] staff to get out of the way” and to retool staff training so that it is aligned with new expectations and new settings.
Place value on not just presence, but membership in the community This includes being known by people in one’s community, forming relationships, and making a contribution to the community through work or volunteer activities. Said another expert, “What we want to do is to discover how we can identify places and activities where people can…go beyond presence to participation to contribution.” Providers can help people make community connections by tapping into the social networks of individuals, their families, and support staff.
Consider and individual's preferences A couple of experts noted that a focus on community connections should not be pursued unilaterally for all people. Some individuals may prefer a less connected life, and that should be an option as long as it is an informed choice. An expert noted that people may already have community connections through other aspects of their life, such as their job.
Essential to high-quality Community Life Engagement supports is decreased dependence on paid supports. In other words, individuals should be actively engaged in the community with the minimal supports that are commensurate with their needs. In order to achieve this, Community Life Engagement supports must:
Use social capital to create natural supports As individuals make more connections in their communities, the social capital they are building can be used as natural supports. Tapping into this social capital then leads to a level of interdependence with others in the community that enables fading of formal, paid supports.
For example, by participating in the same yoga class every week, an individual will get to know other class participants as well as some of the gym staff. This level of familiarity can reach the point where staff support is less necessary and the individual can simply be dropped off for the class, knowing that “she’s in an environment where she’s safe, she’s secure, and everybody within those activities knows her.”
One expert described the goal as “not necessarily about the person becoming more independent [but] just as much about creating an intentional community around somebody.” Relying on natural supports can enable participation in activities without a paid support person, stretching service dollars and enabling more natural and sustainable interaction and participation.
Teach skills to build human capital Human capital refers to the specific skills an individual brings to his or her job and\/or community. Community Life Engagement activities can be used to build individuals’ human capital by teaching specific skills for community access and employment. This initial investment in skill-building enables more fading of supports over time. This can also include peer-to-peer strategies, for example, having a person with more mastery of a particular skill, such as riding the bus, teach someone who is still working on that skill.
An expert described using Community Life Engagement supports to “build employment skills, both hard and soft. So we’re working on communication, initiative, problem solving.” The skills gained can range from soft skills such as appropriate hygiene and behavior, to hard skills such as office or culinary work, to related skills such as accessing public transportation to get to work.
In order to achieve outcomes such as life satisfaction, community membership and contribution, and decreased dependence on paid supports, Community Life Engagement supports must be oriented toward, and monitored in relation to, those outcomes. Here are some examples of how to do so: Emphasize goals rather than processes When asked what constitutes quality Community Life Engagement, experts focused on outcomes such as satisfaction, individualization, and connectedness to community, rather than on process measures such as times and locations of activities. Furthermore, as hours in activities are tracked, measures should include the extent to which such activities are “focused on what the person wants to focus on, not just what happens because they go to this particular program or that particular program.”
Hold CLE supports to clear state and federal expectations and guidance While being goal-oriented is the ideal, the consensus among experts was that the current guidance from the Centers for Medicare and Medicaid Services (CMS) and from state IDD agencies fails to set such expectations. While CMS has stated an expectation for community-based day supports under the Home and Community-Based Services waivers, the specifics of what that means have not been proposed, either at the federal level or by most states.
This lack of outcome-focused guidance can be problematic when Community Life Engagement supports are funded and regulated as day habilitation centers. This leads to reliance “on the payment schedule rather than on a value system to support a life that’s fully valued and inclusive in the community.” Experts also emphasized the role of state agencies in creating standards and expectations to offer guidance to providers and hold them accountable. Without such standards, providers lack direction, which results in limited investment.
Lead to or complement employment Experts also agreed that the individual goals upon which each person’s Community Life Engagement supports are based should include age-appropriate roles in the community, with an emphasis on employment. In general, these supports should move individuals “in the direction of integrated employment for those that are in the working age category.” For those who are younger, goals may involve postsecondary education or specific job training; for older people, the goal may be a healthy and sociable retirement. Regardless of age, the basic expectation is that people with IDD have the same kinds of roles as their same-age peers without disabilities.
Community Life Engagement can also supplement employment supports to create more of a full life, filling in any gaps in time, engagement, or interests, particularly for the many people with IDD who work limited hours. For example, someone may be working two days a week in a quiet office setting and using Community Life Engagement supports on the other three days to make more social connections or to be more physically active.
Originally published in 2015 as Engage Brief 1.
As national disability policy prioritizes greater support for community-based integrated employment for individuals with intellectual and developmental disabilities (IDD), the level of participation in services for other daytime activities continues to grow (Winsor & Butterworth, 2012). The role of services related to engagement and participation in community life has to date been largely undefined. The purpose of this brief is to offer a definition of Community Life Engagement, share reasons for its relevance and timeliness, and present results from a Community of Practice with administrators and personnel from seven state IDD agencies hosted by the Institute for Community Inclusion (ICI) in collaboration with the State Employment leadership Network (SELN). It represents the first in a series of briefs by ICI on Community Life Engagement with the intention of providing guidance on its parameters for the field.
Community Life Engagement refers to supporting people with IDD to access and participate in their communities outside of employment as part of a meaningful day. Also referred to as community-based non-work, wraparound supports, holistic supports, or community integration services, Community Life Engagement activities may include volunteer work; postsecondary, adult, or continuing education; accessing community facilities such as a local library, gym, or recreation center; participation in retirement or senior activities; and anything else people with and without disabilities do in their off-work time. Such activities may support career exploration for those not yet working or between jobs, supplement employment hours for those who are working part- time, or serve as a retirement option for older adults with IDD.
There are several reasons why Community Life Engagement is especially important.
States and providers report growing numbers of individuals with IDD in non-work services. The National Survey on Day and Employment Services, conducted annually by ICI under the Access to Integrated Employment project, categorizes day and employment supports into four quadrants based on whether they are work or non-work and community- or facility-based. Community-based non-work (CBNW) services, those services in the non-work and community-based quadrant, have seen considerable growth. CBNW services have the potential to support Community Life Engagement when used effectively, yet there has been limited regulation or study of CBNW to date.
Although CBNW service users are increasing, the category remains undefined. Research conducted at ICI indicates that CBNW generally involved a wide range of activities supported, populations served, and goals. States also had inconsistent use of specific guidelines such as staffing ratios, group sizes, or proportion of time spent in community settings. Prior research by the first author also indicated considerable variability in implementation. The desire to provide individualized supports was counterbalanced by structural and budgetary constraints, resulting in varied levels of individualization, choice of activities, and hours of support offered. The relationship between CBNW and work was also inconsistent, with some individuals receiving both work and CBNW supports, but more often CBNW serving as a substitute for employment
Recent federal guidance has further illustrated the need to define and provide high- quality Community Life Engagement supports.
Department of Justice (DOJ) DOJ has clearly stated that in order to be in compliance with the ADA and the Supreme Court decision in Olmstead v. LC, states must provide day and employment supports in integrated settings (U.S. Department of Justice, 2014; United States v. State of Rhode Island, 2014), placing pressure on all states to move individuals from segregated settings to more community-based models of support.
Center for Medicare and Medicaid Services (CMS) In January 2014, CMS also released new rules that defined, described,and aligned home and community-based setting requirements (Center for Medicaid and Medicaid Services, 2014). The new rules specify that states must maximize the opportunities for individuals to access community living in the most integrated setting. To meet this standard, states are turning to both supported employment and Community Life Engagement supports.
On May 29, 2014, ICI staff, in conjunction with the SELN, hosted a Community of Practice of interested member states to discuss emerging issues in CBNW and Community Life Engagement. A Community of Practice is group that shares a common interest and interacts regularly as a method of sharing and co-learning about related domains or areas.
A combination of twelve state IDD agency administrators and other personnel representing a total of seven states participated (AZ, CO, FL, HI, NV, RI, and VA). After an introduction to the overall issues by SELN staff, agency staff members from each state were given five minutes to speak. State participants were asked to reflect on the question, “What are your state’s biggest priorities for CBNW?” Six of the seven participating states responded to the question. Themes emerging from this discussion were:
Supported employment and Community Life Engagement are not mutually exclusive. States are starting to move from an exclusive focus on employment to thinking about how other community engagement activities relate to and can promote employment. Nevertheless, states wish to ensure that focusing on Community Life Engagement doesn’t detract from the employment focus. They want to learn how Community Life Engagement supports can be better designed to promote and\/or wrap around employment as the primary expectation.
States want guidance from CMS on how to incorporate Community Life Engagement into their home and community-based services waivers. State agency administrators seek information on what constitutes an acceptable environment (setting) in which service or support may be provided under the new HCBS rule, and what to include in their HCBS state plans. They also want clarification on what Medicaid will reimburse: for example, can Medicaid HCBS funds be used to pay for a gym membership or community education class in lieu of segregated programming?
Community Life Engagement activities should promote community inclusion and integration. For example, volunteer work should be an activity that is meaningful to each individual and occurs alongside community members without disabilities in whatever capacity the individual chooses.
States struggle with how to fund the conversion from facility-based to high-quality Community Life Engagement activities. Although state systems are often designed around a congregate model of service delivery, quality Community Life Engagement supports should be individualized. Providers need support to make the conversion, including additional staff training. Other related challenges include determining how to support activities outside traditional day programming hours and how to engage natural supports.
Community Life Engagement should be incorporated into transition plans and person-centered plans. This is particularly important given the emphasis on person- centered planning in both CMS and DOJ guidance. Community of Practice members wanted Community Life Engagement to be incorporated in these plans and needed assurance that providers can find appropriate community activities, volunteer work, and civic engagement opportunities based on individual choice.
States would like to connect Community Life Engagement with family-centered approaches. Determining the role of family members in supporting activities outside of work is a key area of focus in some states. Particularly essential is determining what are the roles of families versus the service system in supporting non-work activities, especially outside of traditional day programming hours.
There is a lack of clear goals, definitions, and measurements for Community Life Engagement. As one state participant said, “How do you measure success?” Success is harder to define with non-work activities than with employment outcomes. States need to determine how they can effectively provide quality assurance and ensure compliance with HCBS and Olmstead requirements.