Data Sources, Definitions, and Measurement

Originally published in 2015 as Engage Brief 2.

Introduction

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.

Data Source #1

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).

Data Source #2

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)

Data Source #3

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.

Considerations for using these data towards a better understanding of Community Life Engagement

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.