1 of 50

CLE-Toolkit-old

Toolkit

The toolkit includes six topical sections:

Community Life Engagement is a project of ThinkWork! at the Institute for Community Inclusion at UMass Boston. ThinkWork! is a resource portal offering data, personal stories, and tools related to improving employment outcomes for people with intellectual and developmental disabilities.

Not sure where to begin? Looking for more individualized guidance? Contact Jaimie Timmons to learn more about technical assistance options from ICI Consulting: Jaimie Timmons@umb.edu.

Funding Sources

Funding for Community Life Engagement is provided in part by The Administration on Intellectual and Developmental Disabilities, Administration for Community Living, U.S. Department of Health and Human Services, under cooperative agreement #90DN0295, and by The National Institute for Disability and Rehabilitation Research, US Department of Education, Field Initiated Program, under grant # H133G140150.

Introduction

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.

Introduction to CLE

Originally published in 2015 as Engage Brief 1.

Introduction

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.

What is Community Life Engagement?

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.

Why Is Community Life Engagement relevant now?

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.

What are state IDD agencies saying about Community Life Engagement?

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.

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.

Four Guideposts for CLE

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.

Where this information came from

The information that developed the guideposts came from two sources: expert interviews and case studies.

Expert interviews

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

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

Why do we need these guideposts?

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.

Four Guideposts for Community Life Engagement

Guidepost 1: Individualized supports for each person

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.

Guidepost 2: Promote community membership and contribution

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.

Guidepost 4: Ensure that supports are outcome-oriented and regularly monitored

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.

Assessment Tools

This section includes tools for reflecting on existing Community Life Engagement policies and practices for both state IDD agencies and provider organizations, in order to consider areas for improvement. The state and provider self-assessments are organized by the four guideposts, so they are good starting points for prioritizing use of the toolkit.

Use the sidebar on the left to access the assessment tools.

State Agency Self-Assessment

This assessment is intended to help your state IDD agency assess the current strengths of its Community Life Engagement (CLE) policies and practices and to identify areas for improvement.

The self-assessment has two parts:

Part 1 asks you to reflect on your state agency’s goals and activities concerning CLE in general.

Part 2 is divided into four sections representing the project’s Guideposts for Community Life Engagement. You will be asked to rate your agreement with several statements related to each Guidepost.

Access the state self-assessment here.

Provider Self-Assessment

This assessment is intended to help your organization assess the current strengths of its Community Life Engagement (CLE) supports and to identify areas for improvement.

The self-assessment has two parts:

Part 1 asks you to reflect on your organization’s goals and activities concerning the provision of CLE supports in general.

Part 2 is divided into four sections representing the project’s Guideposts for Community Life Engagement. You will be asked to rate your agreement with several statements related to each Guidepost.

Access the provider self-assessment here.

Guidepost 1: Individualize Supports

This section focuses on Guidepost 1: Individualize supports for each person. Community Life Engagement supports should be tailored to the interests and needs of each unique person. Individualization of supports:

starts with understanding personal preferences, goals, interests, and skills
emphasizes person-centered planning and discovery, and
requires creative staffing, intentional grouping, and at times generating additional funding.

Use the sidebar on the left to access an overview of Guidepost 1, two promising practices from providers that illustrate how to implement the Guidepost, and a set of additional resources for further consideration.

Guidepost 1 Overview

Originally published in 2017 as .

Introduction

This chapter elaborates in detail Guidepost 1: Individualize support for each person and highlights examples of how this guidepost is being implemented by service providers based on expert interviews and case studies from outstanding providers of CLE supports.

Individualize supports for each person

Individualized supports were viewed by all interviewees as the central tenet to providing the highest quality Community Life Engagement to each person. As one parent stated: “First and foremost, I think anything you do for an individual has got to be individualized to them and their needs and their community…You always want to start with what the person is interested in.”

Individualization of supports:

starts with understanding personal preferences, goals, interests, and skills
emphasizes person-centered planning and discovery, and
requires creative staffing, intentional grouping, and at times generating additional funding.

Start with an understanding of personal preferences, goals, interests, and skills

“It's not a written policy, but it's part of our orientation and our culture. It's that everything is individualized. Everything is identified by the person and the settings that they want to be in.”

Individualization of CLE supports usually started from first contact with the individual. Interviewees described a process of sitting down with the individual (and often their family) to better understand who the person is, their likes and dislikes, and their visions and plans for themselves. This was an opportunity to listen and discuss how the provider can best serve their needs. As one parent recounted:

“When we initially met with the people here, they asked (her) a lot of questions about what she liked and seemed to really listen to that, what she didn't like. She's very vocal about what she likes and doesn't like. And it was nice to have somebody listen... And yet be willing to push her sometimes a little bit out of her comfort zone because that also sometimes, with her, needs to be done to try something new. And then if she didn't like it, you come back and talk about it."

Individualizing supports aimed to put the individual in situations they chose to be in, and in situations where they felt comfortable and could thrive. By customizing supports to each individual, providers avoided “programming” or, as one interviewee put it, “stuff(ing) people into activities.”

It’s also important to remember that individual preferences, interests, and skill sets change and evolve over time, so the need to keep asking and observing is paramount. As a result, the activities that an individual participates in should evolve as well.

Emphasize person-centered planning and discovery.

Person-centered planning, Discovery, and other formal or informal planning processes help develop the individual’s goals and interests into activities that will eventually comprise daily and weekly schedules while still maintaining their personal choices. Many individuals can have the same goal, but how they accomplish each goal should be tailored to the individual. Maintaining a commitment to one’s goals is considered important. As one direct support professional said,

“And if we're halfway through the year and we're seeing maybe a goal isn't going well…say we have a consumer that has an exercise goal. …we try and convince them, "Your service coordinator really wants you to go. I mean this is one of your goals. Are you sure?"

"No, I don't want to do that." [So] we try and make it fun, "Well, how about instead of working out at the Y, let's just go for a walk at the lake." Or…"Hey, you want to go play basketball?"

One provider manager recommended that, for truly individualized results, the discovery process take place in the individual’s home instead of the provider’s office:

“It’s just an extension and an increase of a discovery that we used to do anyway here, but just more directed and has a structure... And it does help us even to look at places and look at things that we might not have taken into consideration, because it gives you direct tools….And you might not know that in their home they have all this stuff they’re very interested in that doesn’t come out somewhere else."

High quality person-centered planning and discovery and the gradual development of a CLE plan should first and foremost be based around an individual’s interests. As one parent explained, “You always want to start with what the person is interested in. If the person is interested in animals, go into animals. If the person's interested in photography, go to a local photography club and regularly attend their meetings.”

As interests reveal themselves and goals toward CLE begin to be developed, the individual can be introduced to opportunities and experiences that may be outside of their comfort zone. This can foster life skills or act as career exploration, as described by a provider manager:

“We do outreach to the volunteer sites… and we base it off of our client’s interests. Not only their recreational interests but also if they’re interested in like learning a certain skill or like data entry or maybe somebody wants to learn how to cook or something. We try to really ask them what their interests are.”

Sometimes an activity builds upon already discovered interests. At the same site, a direct support professional described how an individual’s interest in his Jewish heritage led to a new level of engagement:

“One of the clients in the program, his mother's Jewish, and he's very aware of his heritage …[and] we just restarted our connection to the Jewish Contemporary Museum. And as soon as he heard that.. he wanted to do it and come in on a Friday [when he’s never wanted to participate on Fridays before]. I was like, "Wow!" So it was good for me to hear that…it was connecting with people in something that's really important to them, and you make that direct connection.”

Consider creative staffing, intentional grouping, and generating supplemental funding

A common challenge is individualizing supports with limited resources. Some described strategies for managing staffing through creative approaches to grouping and scheduling individuals, re-defining staff roles, and finding and using funding. Each case study site had a slightly different approach and focus, but all were aimed at the same goal of maximizing individualization.

Creative staffing

One case study site focused on 1:1 support from a specific staff member, as one direct support professional explained, “We try and keep it at one on one. I mean we try and keep it to where they have one staff person that they are familiar with and comfortable with and come to rely on a little bit.” While staff hours and individual’s funding sources and support needs occasionally made 1:1 prohibitive, staff-wide collaboration across all departments ensured familiarity with the individual so that their supports remained individualized. Another case study site offered individualized supports by having three to four staff members work with one individual throughout the course of the week based on the individual’s schedule. Rather than each staff member having a specialty, staff members were trained to support the individual in multiple roles from employment to non-work activities. Balancing these ever-changing schedules required collaboration and frequent communication in order to make sure individualized supports are maintained, as described by a manager at that site:

“I do all the schedules, and our schedule is color coded, if you can imagine nine staff and I believe 15 people that we support on a day to day basis. … I always call it a Rubik’s cube, so when you shift something everything else has to take that into account. And so it’s tremendously challenging because it’s not a 9:00 to 2:00… And so a staff person might be supporting you for a couple hours … and then might be supporting two people together throughout the day. They might have a four-and-a-half hour day or they might have a ten-and-a-half-hour day.”

And due to funding limitations, the third case study site supported individuals in groups led by one staff member. In order to keep supports individualized, however, these groups were organized based around the interests of the individual and their schedules, as described in the next section.

Intentional Grouping

Purposeful grouping to individualize supports despite group staffing ratios was a strategy many interviewees discussed. Providers attempted to group individuals based on shared interests or friendships, as described by a provider agency administrator:

“So we have white boards around the office, where people say, “I want to learn to knit.” So we'll put knitting up there and we'll put the one person that wants to learn to knit. And then if someone else comes along and someone else, when we have a critical mass, we then go research that opportunity and find it in the community.”

Similarly, a direct support provider said, “When we have another staff that’s out doing the same [activity], we really try and meet up and do something together because, [many whom we support] have been lifelong friends... So we try to utilize the time we have together as well as possible”

While focusing on individual interests should be paramount, a provider manager spoke to the need for occasional compromise.

“Sometimes with the scheduling we’ve had to ask them to like compromise a little bit, but, for the most part, we want them to be doing what they want to do. And, yeah, I would say, for the most part, they really speak their minds and then we change their schedules accordingly. There is some need for us to maintain the schedules consistently because it gives us a better opportunity to work on those skills, but if they really hated something we would never make them go just because that’s what the group is doing that day.”

Generate Supplemental Funding

Maintaining individualization with limited funds for staff was another common problem addressed by providers. Two of the case study sites found creative methods to bring in new funds, such as using direct service staff to offer trainings or technical assistance to other providers looking to expand community-based supports. Said one administrator,

“We’re trying to look at how else can we bring funding in, and a lot of what we are trying to do is through our training contracts and utilizing the staff that’s doing the direct service here to do training and to use that to subsidize the fee for service rate, because it just isn’t covering it.”

To offset limited direct funds, one provider employed a strategy that braids funds. Developmental disability services funds were used to facilitate job exploration and skill building. Upon placement in a job, the provider then used vocational rehabilitation funds to offer job coaching. Day service hours gradually decreased as employment hours increased.

This strategy was approved by the regional developmental disability office, which saw cost savings from the provider absorbing the day support hours (with the idea that they will decrease as the individual becomes more independent) and using vocational rehabilitation funds to support employment. The strategy allowed staff to maintain their specialties, said an administrator:

“So the community instructors, we don’t pull them to job coach because that would involve scrambling these groups and we don’t want to do that, so the group day stuff is like set in stone and community instructors really focus on that element. And then our employment services people…do all of the work-related stuff.”

Another provider relied on a Medicaid program where provider boards and the Department of Mental Health match 40% of Medicaid’s contribution. For a $2,000 outlay, the provider then has access to $12,000 worth of preventative, community-integration services.

But even the $12,000 sometimes proves not enough. This provider also used small grants from county-based boards to supplement waiver funds for community integration services. These grants are given with no required designation, so the provider can use the funds for non-covered Medicaid services such as employment follow-along or for those who are not waiver-eligible.

This patchwork funding was part of the current financial reality facing the state in which this provider operates, making the need for early community integration all the more immediate. According to the agency director:

“…as you know, money is very, very tight…it used to be you'd make someone eligible, and you'd start throwing services at them. Now the philosophy is, you make somebody eligible, and you start helping them figure out how to do things on their own, without support, without paid support.”

However, most staff were committed to serving individuals with disabilities and understood the financial stress the provider was under. Said one direct support professional,

“You can spend a lot of time in a day doing stuff for people that you're not getting paid for… But our agency… we're focused on what the person needs. I mean, as long as it's realistic. If we have to drive across town to go do this [with] them or take them here or to get a resource, we're going to do in 99 out of 100 times. We're not going to leave a person hanging."

What’s next?

This section is part of a series of four guideposts, each expanding on one of the four Guideposts for Community Life Engagement. These briefs serve as a core element of the Community Life Engagement toolkit for states and service providers.

Guidepost 1 Promising Practices

Avenues Supported Living Services of California and Katahdin Friends, Inc. (KFI) of Maine implemented Guidepost 1 in an effort to individualize supports for each person. Use the sidebar on the left to read their stories.

Avenues Staffing

Heike Boeltzig-Brown

Background

Avenues Supported Living Services of Valencia, California was founded in 1997 by a husband and wife team, Scott and Lori Shepard. The agency provides supported living and community life engagement (CLE) services to individuals with intellectual and developmental disabilities (IDD). Key to Avenues’ success is a staffing approach that is grounded in client relationships. The agency limits staff hours to two shifts per week with the same individual.

This is done to facilitate client-staff matching and relationship building, but also to prevent potential burnout and frustration by ensuring both the clients they support and their staff have variety in their schedules. Avenues staff have expanded what they do by mentoring other agencies from within, thereby increasing service choices for individuals with IDD and their families. As of October 2016, Avenues provided CLE support to 26 individuals with IDD. Of those, 23 also received supported employment. Avenues does not have any supported employment funding per se, but provides job coaching in combination with individualized day services / CLE.

Implementation

An individualized approach to service provision.

A focus on meaningful and productive activities guides Avenues’ CLE supports, which wrap around individuals’ work schedules. Examples of CLE activities include support with seeking and maintaining a job (paid or volunteer), enrolling in college classes or via adult education programs, and enrolling in recreational or hobby classes through local parks and recreation, the YMCA, etc. The approach lets clients gain exposure to new and preferred community activities, and provides structured support during times when the clients are not working. Clients can get up to 16 hours of CLE per day at a time that is convenient for them.

The amount 4 of support is based on a client’s individual needs. If a client needs less support during a particular activity, Avenues staff will start fading support for that activity. Scott Shepard provided the example of a client, Peter, who had been working in food services for over 20 years. Peter had a three-hour, five-day-a-week job. In the morning, Peter would go to Gold’s Gym, where he was a member. A staff member would help him choose and enroll in different classes. After having lunch, Peter would then work from 12:30PM until 3:30PM.

Avenues makes sure that in any given class, gym, volunteer job, or paid job, no more than 10 percent of the people there have disabilities. “When people are actively engaged with people that care about them and that they care about and have some places they call their own where they can see they're doing something meaningful and productive, their lives tend to be better, just like ours,” Scott explained. “So our mission is to help use that person-centered planning or thinking process to help people find connections and niches in our community that make sense for them.”

Hiring and staffing based on client relationships.

Staff have no more than two shifts per week with the same client. Avenues has found that, if a staff member spends too much time with the same individual, both the staff and the client tend to exhaust the relationship. The two-shift approach ensures that both clients and staff still look forward to seeing each other. This helps the relationship flourish. Avenues’ staffing approach also addresses the fact that staff take time off or go on leave. If one staff works five days a week with the same individual, and then takes a week off or goes on leave, the client’s routines change drastically.

In contrast, if a staff works with five different individuals (one each day), and he or she takes a vacation or goes on leaves, then each of those clients has only one day of their week disrupted. As an article from TASH puts it, “It is easier to create good matches between support people and people receiving support when the priority is not based on a person’s need to work a specific number of hours, but a person’s ability to fulfill the needed duties of the shift.” Avenues offers staff flexible work schedules, the total number of hours being subject to clients’ support needs and schedules. Avenues typically introduces newly hired staff to clients who have support hours available.

It takes time before a staff member can get into full-time employment, because they have to develop relationships with the individuals they support before increasing their hours. As of October 2016, Avenues has about 80 employees. Of those, 15 are roommates (i.e. they get paid to live with and support an Avenues client), and some of those also work with other people Avenues supports. Nine are middle management, and two are both roommates and middle management. About 15 other staffers are full time and the rest are part time, ranging from five to 30 hours a week. Some of the part time staffers are interested in more hours, but most are working the hours that fit their schedules.

During job interviews, Avenues leadership asks candidates about their interests and experience 5 to get a feel for which clients they may get along with. They then decide on the first individual to introduce a new staff to. Based on the training with that individual, leaders determine other people the new staff member may work well with. All staff are hired as employees (rather than contractors) and get benefits according to their status.

Expanding service choices by mentoring new provider agencies.

Despite pressure from funding sources to increase the number of clients, Avenues leadership chooses to remain a small program, serving no more than 20 clients. Adding more clients, in the Shepards’ opinion, would compromise the quality of services and supports that they provide. Avenues staff have expanded what they do by mentoring other agencies from within. The goal is that staff develop a relationship with clients and then branch off into their own agencies.

Supported living and CLE service providers in California actively share resources, ideas, and supports with one another, so mentorship was a natural way for Avenues to support the expansion of the provider community as well as increasing service choices for individuals with IDD and their families. “We hope that by nurturing new agencies to provide quality services, families will have real options and not be stuck with whoever has an opening,” said Lori. As of October 2016, Avenues has supported four staff members in creating their own programs.

Avenues was, itself, mentored into existence, and subsequently has mentored two other agencies. It has also assisted others in going through the process of becoming vendors. Each agency’s situation is unique and treated individually. In one case, the new agency directors had a lot of experience in providing services, but needed help on the business end. In another, the directors needed help in doing assessments and navigating the systems involved in service delivery. Some agency staff come to Avenues for help in writing up their service design or creating staff training modules, and others just want advice on a variety of topics.

Avenues has a good relationship with most of the other agencies in their area that provide similar services, since this is generally a non-competitive field. Avenues staff are currently working with a few agencies at various stages of development. It often starts with Avenues staff sitting down and going over a person-centered plan for the agency director. From there, the mentorship is customized. Some potential agencies do not go beyond this planning stage, while others continue to work with Avenues over time.

Impact

Using this staffing approach has enabled Avenues to keep staff turnover low. Retaining staff allows Avenues clients to maintain long-term relationships and trust. With that trust comes a willingness to try new things and take chances on other relationships. Lori noted that many former employees keep in touch with the clients they supported, even 10 years after they have left Avenues. Holiday and birthday cards are exchanged, and many staff even visit when they are in town. 6 Clients see staff once a week (instead of every day).

Different personalities work together in different ways, so a client can look forward to doing a variety of activities with staff who also enjoy those things. For example, one client may enjoy live concerts and work with a staff on Friday nights who also enjoys concerts. That staff may not be a good cook, so the client would not want to spend every evening with that staff. Variety in the staff schedule is good for staff as well. A staff can work with someone who needs a lot of physical support on Monday, a person who is non-verbal on Tuesday, a person who talks constantly on Wednesday, a person who needs a lot of emotional support on Thursday, and a person who is really active on Friday.

This variety helps staff to enjoy and look forward to each day. It also allows for administration to schedule staff to work with their strengths. A staff member who is a good cook can work five evenings with a different client each day, thereby positively affecting five clients. A staff who likes to work out or enjoys crafts or is a great organizer can likewise be valuable to five different teams. In contrast, if that staff works with the same client each day, it would get monotonous for both the staff and the client. “We all spend time with a variety of people and friends, engage in a variety of activities and get chores done in our own life. We try to ensure the people we support have the same opportunities,” said Lori.

Suggestions for Replication

Ensure variety of client and staff schedules.

Avenues limits staff time to two shifts per week with the same individual. The two-shift approach prevents potential burnout and frustration by ensuring that both clients and staff still look forward to seeing each other, which helps the relationship flourish.

Invest in client-staff relationships

Avenues recruits and hires staff with clients in mind. Effectively matching clients with staff is important for providing fully individualized CLE in combination with employment supports (job coaching). Giving both clients and staff a choice about who they would like to work with is key to successful client-staff relationships.

For more information

Scott Shepard, Executive Director: shepard6@pacbell.net

Lori Shepard, Director of Operations: avesls@pacbell.net

Website: http://www.avenuessls.org

Shepard, L. (2006, September/October). Opening New Doors Through Mentorship. TASH Connections, 32(9/10), 18-20.

KFI Flexible Scheduling

Heike Boeltzig-Brown

Background

Headquartered in a small rural town in northern Maine, Katahdin Friends, Inc. (KFI) provides community employment and life engagement supports, as well as home supports, to individuals with intellectual and developmental disabilities (IDD). KFI’s services extend throughout northern and southern Maine, including the cities of Portland and Bangor.

A flexible approach to staffing and support scheduling helps KFI ensure customized daily support schedules that meet individual goals. This approach also allows individuals to interact with a variety of direct support professionals, which is important for having a more engaged and meaningful life in the community.

As of July 2016, KFI supported 66 people with IDD through combinations of home, community, and work supports, and 28 people with a variety of disabilities in short-term job development funded by the public vocational rehabilitation program.

Implementation

While most providers assign a group of individuals with IDD to each staff, KFI takes the opposite approach, assigning a team of three to five staff members to each individual. Because of this unusual staffing system, they are able to offer one-to-one support to many individuals at once via a rotating weekly schedule.

This means that one staff spends one to five hours with one individual, and then goes on to support another individual, sometimes in the same day. Other individuals have staff live with them at their home in revolving, 56-hour shifts. Support schedules are customized by day and continuously updated by KFI’s regionally based support teams to accommodate last-minute changes in individuals’ schedules, as well as any staff changes.

Using this flexible staffing approach was a natural outcome when KFI closed its center-based facilities and began supporting individuals in their homes and communities, says Gail Fanjoy, KFI’s CEO. Several KFI staff had different community connections that they could use on behalf of the individuals who they were serving. Staff used these connections across individuals to more deeply integrate them into their communities.

To ensure a flexible staffing arrangement, KFI staff need to be well versed in both employment services and community life engagement. “Our staff who work in these support schedules do everything,” explains Fanjoy. “They may be job coaching. They may be helping individuals connect in their community. They may be at a music jam in the evening, helping individuals to explore their love of music and entertainment.”

Forty-seven of KFI’s 84 direct support professionals are certified employment staff. While not mandated by the state of Maine, KFI expects all of their direct support professionals to take the College of Employment Services online training that incorporates the Association of People Supporting Employment First (APSE) nationally recognized supported employment competencies.

The direct support professionals that KFI hires need to be “joiners” who participate in their communities. Especially in the smaller, more rural communities, KFI staff know almost everyone, making it easier to connect community members to the individuals they support. KFI also looks for staffers who have proficiency with family engagement, and who understand the process of “person-centered thinking” and the concept of self-determination for people with IDD.

KFI prioritizes staff training and encourages staff feedback to make sure the goals of individuals with IDD are being met, and that those individuals are continually afforded full choice (including the occasional bad choice) in what activities they want to do. KFI has frequent staff meetings, pre-established quarterly goals, and required benchmark reports. Goals are intentional, but with a certain amount of flexibility when it comes to carrying them out. Direct support professionals together with their clients modify activities to meet individual goals and interests.

Impact

Staff flexibility allows for variation in each individual’s schedule, discourages prescriptive “programming,” and maintains KFI’s “person-centered thinking” ideals. Support providers become experts about each individual they support. This means that KFI clients have access to a range of supports based on their particular needs, up to and including 24/7 support in the home.

Individuals respond well to the rotating staff perhaps because this staffing pattern more authentically represents how most people spend their days: with a variety of people rather than just one. Each staff member brings their own interests to the individual for them to explore. This makes the training and fading of staff easier, as each newcomer is surrounded by several familiar staffers who know the individual’s routine inside and out.

Transportation barriers are addressed as support providers use their own cars and are reimbursed for the miles. This allows for flexibility to mold to people’s busy schedules.

KFI staff appreciate the flexibility that comes with their job, allowing them to better balance family and work life. The amount of flexibility granted to a staff member increases with seniority on the job. Staff flexibility not only positively impacts staff retention but also works as an incentive to recruit new staff members, says Fanjoy.

Suggestions for Replication

Root all practices in a clear philosophy. KFI has a strong, philosophical approach in everything they do, including how their supports are designed and delivered. These values are manifested in every aspect of the organizational culture, from hiring, to training, to individualized and highly flexible supports.
Focus on individual experiences. For KFI, community life engagement is all about building experiences for people and creating opportunities for individuals to be engaged in natural settings. Their services do not involve person-centered planning so much as person-centered thinking throughout all aspects of the organization.
Cross-train staff for multiple roles. Staff need sufficient training to fill various roles, including providing home, community, and work supports.

For more information:

Gail Fanjoy, CEO: gfanjoy@kfimaine.org KFI website: http://www.kfimaine.org Another KFI promising practice: “Making Mission-Driven Choices About Funding and Service Innovation”

Guidepost 1 Additional Resources

Use the sidebar on the left to access a selection of resources that promote Guidepost 1: individualizing supports for each person.

Person-Centered Planning Tools

The LifeCourse framework was originally developed by Missouri Family to Family, housed within Missouri’s University Center for Excellence in Developmental Disabilities Education, Research and Services (UCEDD) at the University of Missouri–Kansas City Institute for Human Development.

The Integrated Services and Supports worksheet is designed to help families and individuals think about how to work in partnership to support their vision for employment.

County Connections Initial and Annual Assessment is a very holistic assessment of individuals' network, goals, and needs, based on the LifeCourse categories. It gives a clear picture of any gaps that may be missing from natural and paid supports.

The Positive Personal Profile is a person-centered planning tool used by TransCen and other providers. It takes inventory of all of an individual's positive attributes as well as where they need support.

Guidepost 2: Promote community membership

This section focuses on Guidepost 2: Promote community membership and contribution. Ensuring that supports promote community membership and contribution requires

starting with inclusive settings and activities
ensuring staff presence does not limit connections with other community members
placing value on not just presence but membership in the community, and
considering the individual’s preferences, goals, and other activities

Use the sidebar on the left to access an overview of Guidepost 2, a provider promising practice that illustrates how to implement the Guidepost, and a set of additional resources for further consideration.

Guidepost 2 Overview

Originally published in 2017 as .

Introduction

This chapter elaborates in detail Guidepost 2: Promote community membership and contribution, and highlights examples of how this guidepost is being implemented by service providers based on expert interviews and case studies from outstanding providers of CLE supports.

Promote community membership and contribution

Promoting community membership and contribution is essential to Community Life Engagement. Engagement in the life of one’s community must go beyond simply being physically present in the community to being an active and included member. Ensuring that supports promote community membership and contribution requires

• starting with inclusive settings and activities

• ensuring staff presence does not limit connections with other community members

• placing value on not just presence but membership in the community, and

• considering the individual’s preferences, goals, and other activities

Start with inclusive settings and activities

The starting point for promoting community membership is that individuals are, in the words of one state agency administrator, supported “out in community [in activities that] provide opportunities for interaction with community members.” Doing this with quality meant, in the words of one state agency leader, providing supports “in an inclusive environment…in our community where adults would be…able to be learning meaningful skills in the community, in inclusive and integrated settings with people without disabilities”

Accessing inclusive opportunities often involved service providers partnering with other local organizations to identify community resources and generate new community-based options. One provider administrator who is also a family member summarized the concept in this way: “We have to look at getting business folks as part of that conversation, getting universities as part of that conversation. Just rethink that whole partnership so we can figure out how to do services in a different model.”

Interviewees explained the value of fully inclusive settings not only for the individual, but also for the larger community. One parent talked about her daughter’s opportunity to attend a local university. This experience “gave all of [the] students an opportunity to get to know people …in a much more human and personal way… And just made a really rich life for my daughter.”

Other interviewees described examples of individuals being engaged in local organizations, including local arts and theater organizations, church communities, postsecondary or adult education programs, volunteer sites, fitness centers, and businesses.

Engagement with local organizations was particularly important for the two providers operating in rural areas, although interviewees acknowledged the challenges associated with having fewer options. As one direct support professional described: “Our closest Y is about 35 miles away… we have two restaurants, maybe three… [but there are] a couple churches that open their doors to us, two nursing homes that any events that they have, we’re allowed to come and participate in… and a nice lake that is kept up by the city.”

Another interviewee from the same town described partnering with a lifelong friend who worked in the parks and recreation department to create new opportunities. Others also cited the ease of making connections in a small-town setting. One agency manager said, “For sure, everybody knows everybody, and you are constantly seeing the same people everywhere.” A direct support staff likewise said that making connections in town “really was just going out and starting to talk to people and frequenting their businesses… because [my town] is small enough that I can go to every restaurant every week for my lunch.”

Another case study site, in a more urban setting, made use of the considerable resources of its home city to identify a wider variety of options. These included a drama class at a local college, a knitting group at a yarn store, and volunteer opportunities at a diverse array of organizations.

Sometimes this involved deliberately creating partnerships and opportunities, as happened with the knitting group:

One of the people was crocheting, her mother had taught her to crochet, and two of the other young women in the program said, “I want to learn to do that.” So our community instructors were like, “Okay, go, go find someplace to learn to knit.” And [they identified] a yarn store… [and] the community instructor said to the woman at the yarn store, “Do you know of anything during the day?” and she said, “Bring them here at lunch time; I’ll teach them.” So they set up a weekly knitting lesson.

Tapping into the social networks of individuals, their families, and support staff also played an important role in identifying inclusive opportunities. One family member talked about the importance of having support staff that know the community and are “aware of potential employment opportunities, potential volunteer opportunities, the recreational resources and physical activity resources that are available.”

A direct support professional shared his experience tapping into his own networks:

“We have a girl [who]\_ wants to become a teacher’s aide at the early childhood center. So I did an internship there. And I’m actually going to go in with her and talk to the head director of the special education program because that’s who got me an internship, and I’m going to see if she can volunteer there.”_

Networking was considered so important, in fact, that both of the rural providers explicitly considered the extent of potential staffers’ social networks at the point of hiring. One manager described how during the application process, “They have us write down what organizations we're involved in, making sure we're members of our communities.”

Interviewees across the sites were also encouraged to participate in local organizations such as the chamber of commerce or the United Way, in order to make such connections. An administrator said, “What we look for … is people with just a wide variety of interests and community connections themselves.”

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 the development of relationships with community members. One provider administrator described it as “[training] staff to get out of the way” and another suggested the retooling of staff training so that it is aligned with new expectations and new settings:

“I think what you have in many cases is well-intentioned people who simply don't know what to do. And so because they don't know what to do, they default to what seems to be easy, whether that's the mall, or everybody goes volunteering at the same place because that place happens to be receptive to having people with intellectual disabilities ... You get into these default relationships rather than something that's thoughtful.”

Several interviewees emphasized the importance of staff not over-supporting individuals, and avoiding other aspects of the agency’s operations becoming barriers to social connections. One manager described

“the anonymity with which we try to provide our supports. You're not going to see any vans emblazoned with [our] name. You're not going to see any staff with [our] T-shirts on. We really try and be in the background. This is this person's life. We want to be the liaison, the bridge, not the barrier.”

In order to ensure staff presence does not interfere with the creation of authentic community connections, staff members have to maintain a mindset of being in a support role rather than a caregiver role or even a teacher role. Said one direct support professional, “[We] have to remember that this is their lives. We are not directing them; we are filling in the blanks that they can’t manage and helping them gain skills.”

Ensuring that staff are constantly aware of supporting individuals only to the extent that it is necessary is often connected to one’s values, and interviewees specifically looked for this mindset and values base when hiring staff. Two agency administrators stated that they avoid hiring people with previous disability experience because, as one explained, “We find a lot of people who have worked in facility-based services or segregated services really are non-believers. So starting fresh with a blank slate for us is kind of a strategic move… We try to instill that … they are just people.”

Another administrator said,

“People with disabilities deserve and need to just live a typical life, an ordinary life in the community, so it's kind of like the opposite of being special and [the people we hire]\_ must have those values. We can teach people to do anything; they got to walk through the door with those values.”_

Place value on not just presence but membership in the community.

Community membership goes beyond simply being in community settings to a more active level of engagement. Supports should enable people with IDD to be, in the words of a self-advocate, “in the community and part of the community, both.” Community membership included being known by people in one’s community, forming relationships, and making a contribution through work, volunteer activities, or engagement in other community activities. Interviewees strongly believed that community participation and contribution are paramount to true membership.

Consistent involvement in community activities can lead to interactions and relationships with others, forming a sense of membership. As one individual said, “When I go out, I go to the Dollar Tree and talk to them, and they talk to me, and I get to know somebody.” A fellow volunteer working alongside individuals with disabilities commented, “If the individual is here for a consistent period, the relationship is great. If it's revolving doors, then, obviously, there's not much of a relationship.”

An agency administrator pointed out that this applies to anyone in any situation: “If you go to the same places all the time then you get to know people. You go to the coffee shop and get your coffee every morning; before long they know who you are, and it's not any different than the folks that we support.” The same person went on to describe using this strategy to develop community membership for the individuals through consistency:

“We deliver magazines to the Quality Inn. We try to make sure that the same individual does it every month so they get to know the front desk person or the owner or the shopkeeper or whoever it is. And then, in a couple of months, you would hope to see, "Hey, [so and so]\_, thanks for the magazines," … And then the merchants start seeing the value of not only the volunteer work, but the value of the folks that we support.” _

Community membership includes developing relationships that enhance the quality of people’s life. These may include relationships with coworkers that extend beyond the workplace. For example, one provider manager recalled a story where ten coworkers drove two hours to show their support for an individual participating in Special Olympics. Another talked about an individual’s newly built friendships at his job:

“Some of the other guys there are really into sports and wrestling as well, and they actually pick him up from his house… and drive to [where] they have the big… tournaments…at night or on the weekend, not work related. They have no obligation to [this individual] at all and they’re including him.”

Community membership is established not only through relationships but also through contribution to the community. As one researcher explained, “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.” Many individuals used their CLE supports to volunteer at various local organizations in need of assistance. A direct support professional described a volunteer experience at a local nursing home:

“They loved to have our people volunteer, come out and just help, and then just be included in the activities to the nursing staff and administration level. Our consumers love being able to go out there and help the elderly. ”

An interviewee from a local Meals on Wheels program also described individuals’ contributions to elderly residents:

“They go out on the route and they deliver the meals door-to-door for us. They also do errands for people in town. If some of the seniors can't go to the store or do something, they can call. And if they have the grocery list, you know, and they give them the money, they can go to the store and do that for them.” Community contribution also included opportunities for individuals with IDD to create positive change in their larger communities. For example, one individual gave a guest lecture about her employment experience to a human resources class at a local college, promoting disability awareness to a professional audience. A member of the community reflected, “It was fantastic…[The professor has] actually asked us to come back because her class…commented on how refreshing that was and how much they learned about the disability population and working.”

Another individual took art lessons with an instructor without disability experience, and ended up contributing to the instructor’s skills. His mother recalls, “[He]…has art lessons once a week. And [the teacher] wasn't sure how she was going to work with him, but she has learned, and she loves it. She said she's not sure which of them learned more in the art classes, her or him.”

In yet another example, individuals volunteered by welcoming new members to their neighborhood. As one community partner indicated, “Once a month they would get the list and the addresses of the new people that are in the community. And then they would go out and deliver the welcome packet, and just kind of welcome them and answer any questions they might have.” These examples reveal individuals’ ownership of their community and the larger positive impact as a result of their contribution.

Consider individual preferences.

Interviewees noted the important caveat that a focus on community connections should not be pursued unilaterally. Some individuals may prefer a less connected life, and that should be an option as long as it is an informed choice. One researcher noted that people may already have community connections through other aspects of their life, such as employment, “So if somebody has a lot of relationships and that part is fine and they want to [engage] in a community life kind of activity where they’re not surrounded and they’re more working alone or not necessarily with a group, that may suit them.”

A state agency leader shared that for some people, particularly those with autism spectrum disorders, “The idea of engaging a bunch of people in the community, while it's important, may not be exactly what they're comfortable with or may not be exactly how they ultimately find employment.”

Finally, a manager also shared a similar perspective:

There are some people who just don’t feel comfortable with other people, don’t want people in their homes and, again, that may be not what our ideal is and maybe we feel like their life would be richer, but if they don’t [want that] we have to recognize [it].

Guidepost 2 Promising Practices

Learning Opportunities/Quality Works (LOQW) in Missouri implemented Guidepost 2 in an effort to promote community membership and contribution.

Use the sidebar on the left to read their story.

LOQW Using Networks

Oliver Lyons

Background

LOQW (Learning Opportunities/Quality Works) is a community skills training, service coordination, and employment services provider in northeast Missouri. LOQW employs over 100 people and serves 14 counties in northeast Missouri and 600 customers annually. Their mission is to “positively impact the lives of individuals through support, advocacy and connection to resources.”

LOQW operates several satellite offices in addition to its main office in Monroe City, MO. One of these satellite offices is located in Hannibal, MO, a city with a population of less than 18,000. For comparison, Busch Stadium in nearby St. Louis can hold over twice that amount of people.

But being located in a small city does have its advantages. One advantage is that a majority of

the Hannibal staff has lived there for their entire lives, and they have countless connections in the area. Staff often use their own networks to bring people they support into the community and access services. These relationships also help create many volunteer opportunities that allow individuals to build reciprocal relationships with members of the community.

Implementation

Because Hannibal is such a small city, staff networks are homegrown and relationships have existed for years. As one staff person summarizes it,“... I went to school with basically everybody that works in this office or like Wendy is my friend’s mom... I mean everybody knows everybody.” When seeking opportunities for community participation, staff access their networks to identify options. And these networks are not just comprised of people who work in social service. They are with a wide array of community members, including teachers, police officers, small business owners, and clergy members.

So though Hannibal may lack the resources of a larger, urban environment such as career training centers and specialized classes, these

close relationships allow access to many opportunities that would perhaps not be available to most people. One LOQW staff member provided an example: “[Another staff member] knows people, I know people... [For example,] we have a [person we are serving who] wants to become a teacher’s aide at the Early Childhood Center, so I did an internship there... and I’m actually going to go in with her and talk to the head director of the special education program because that’s who got me an internship, and I’m going to see if she can volunteer there.”

Volunteering is an important aspect of community membership that is encouraged at LOQW. Because Hannibal is such a close-knit town, the community often actively gives back to LOQW. For example, the local YMCA offers LOQW free passes for staff and individuals they serve to use their pool, and the Parks and Recreation Dept. offered to help build and fund a sensory room at the armory for the entire community to use.

Given the generosity of the Hannibal community, individuals served by LOQW are encouraged to reciprocate that relationship by participating in volunteer activities through churches, Meals on

Wheels, town government, and self-advocate groups. Volunteering not only helps serve the community, but by consistently showing up to the same places over and over again, the individuals are able to build relationships with people in the community. As LOQW’s director of employment and community services says: “You need to go to the same places all the time. When you go to the same places, you start seeing the same people, and you start building relationships, and it honestly should be that easy. It should be that easy.”

Impact

One staff member explained using their personal network to assist an individual that had no family who had to be removed from her home:

“Monday, we got her into a domestic shelter in local Hannibal. But then what was she going to do for her whole day, and she's starting all over and she had no family, no money, nothing. So we found--my kids go to a daycare right down the street from the shelter, and I talked to the director who I've developed a relationship with, and worked out a volunteer job for her because it's right down the street. And then we also found her a free bike off of a mutual friend. So she

rode her bike down the street and started volunteering there.

And she wanted to work with children. And we saw that she was really good because we also, on our own free time, were kind of taking her under our wing because, again, we didn't want to leave her in a shelter where she knows absolutely nobody. So I saw on my personal level that she was excellent with kids and I thought, “She’d be great in daycare,” and she said she wanted to do that. So she started volunteering there and got to know the staff and the kids and the director. The director told her as long as she did a great job this summer, which she was, that they had two teachers going on maternity leave this fall, and that they’d love to pay her to come in and work as an employee during maternity leave. “

Another staff member speaks of the reciprocal community relationships that come from volunteering:

“Our nursing homes in Shelbina are great. They loved to have our people volunteer, come out and just help, and then just be included in the activities to the nursing staff and administration level. Our consumers love being able to go out there and help the elderly. So that's a really great place for us...

It started off with we asked if they needed any help setting up Christmas stuff, and they loved the idea. You know, nurses stay so busy in nursing homes they don't really have time to set up Christmas trees and stuff. So when we offered to come out and help, they were all about it.

And, you know, some of the elderly residents there just loved to sit there and watch them and kind of tell them how they'd like the tree set up and whatnot, and it worked out great. And everything since then, we try to always help them set up Christmas trees. Any big events they have, we go out and try to help with, and, you know, maybe some days just go out and play bingo with them. “

Suggestions for Replication

Encourage staff to use their own networks and share those networks. Ask staff to create an inventory of their community connections. Who do they know that could potentially provide a community connection for people with disabilities? Then make those inventories known to all other staff. Even if your organization is in a large city, bringing together your staff’s networks can make knowing who to reach out to for services much less daunting.

Make sure volunteer opportunities are consistent and allow for socializing. Do the people you support to volunteer interact with many of the same people every time they volunteer at a particular location? Do they interact with people without disabilities? Are there opportunities for socializing? Consistent interaction with the same people builds relationships. When considering a volunteer opportunity, think about the potential for relationship building in addition to skill building.

For more information

Oliver Lyons, Research Study Coordinator, Institute for Community Inclusion: oliver.lyons@umb.edu

Wendy Hays, Executive Director, LOQW: whays@loqw.com

LOQW website: http://loqw.com/

Guidepost 2 Additional Resources

Use the sidebar on the left to access a selection of resources that promote Guidepost 2: community membership and contribution.

Engaging Faith Communities

Faith communities can be an important source of connection for people with and without disabilities.

In his presentation From Barriers to Belonging, Dr. Erik Carter describes how church communities can more actively welcome and support people with disabilities.

Putting Faith to Work: The Call and Opportunity for Faith Communities to Transform the Lives of People with Disabilities and their Communities. The purpose of this paper is to outline the vision and foundations of the “Putting Faith to Work” project. "We begin by exploring some of the religious, theological, and spiritual understandings of the importance of work (the “whys”) and then provide more detail about how faith communities might put that vision into practice (the “hows”). This paper (and, eventually a good-practice guide) is not meant to be a rulebook but rather a set of considerations, recommended practices, and creative possibilities. We anticipate and count on the congregations that pilot this project to learn from and be inspired by each other.”

Asset-Based Community Development Institute

The Asset-Based Community Development Institute (ABCD), located at the Center for Civic Engagement, is at the center of a large and growing movement that considers local assets as the primary building blocks of sustainable community development. Building on the skills of local residents, the power of local associations, and the supportive functions of local institutions, asset-based community development draws upon existing community strengths to build stronger, more sustainable communities for the future.”

One of their tools is the Mapping Community Assets Handbook, a hands-on workbook with questions and worksheets to guide mapping of individual and community assets.

Inclusive retirement

The Transition to Retirement intervention was developed in Australia to support inclusive retirement options for older adults with IDD. It is described in this one-hour video.

In addition, the accompanying book is available for purchase in print, Google Play, and Apple iBook versions..

Guidepost 3: Human and Social Capital

This section focuses on Guidepost 3: Using human and social capital to decrease dependence on paid supports. CLE activities within this guidepost can emphasize:

Building individuals’ human capital by teaching specific skills for community access and employment, with the intention of fading supports.
Building individuals’ social capital, which can be used as natural supports.

Use the sidebar on the left to access an overview of Guidepost 3, two promising practices from providers that illustrate how to implement the Guidepost, and a set of additional resources for further consideration.

Guidepost 3 Overview

Originally published in 2017 as Engage Brief #6.

Introduction

This chapter describes Guidepost 3: Use human and social capital to decrease dependence on paid support. It includes examples of how this guidepost is being implemented by service providers based on expert interviews and case studies from outstanding providers of CLE supports.

Interviewees agreed that a key aspect of high-quality Community Life Engagement supports is the goal of decreased dependence on paid supports. Said one provider administrator:

Well, for us, it is being able to be in the community as independently as possible, to have friends, to be able to live in a comfortable, lovely space... Really kind of minimizing the need for services over time.

Enabling people with IDD to be as independent of paid supports as possible requires attentiveness to building both human capital and social capital. Human capital refers to the specific skills an individual can bring to their job and to community experiences. Social capital means the individual’s network of relationships with other people and the value inherent in that network. This combination of human and social capital may serve to decrease individuals’ dependence on paid supports, while helping them to be actively engaged in the community.

CLE activities within this guidepost can emphasize:

Building individuals’ human capital by teaching specific skills for community access and employment, with the intention of fading supports.
Building individuals’ social capital, which can be used as natural supports.

Teach skills to build human capital through modeling, time-limited supports, and peer-to-peer activities.

Modeling

Support staff can help individuals to build human capital by directly teaching specific skills around daily living and community access, as well as skills that can be used for finding and maintaining employment. One direct support staff member cited modeling as one effective approach to basic skill building and development:

You've got to start off with pretty much full modeling, doing their laundry for them, having them look over your shoulder saying, “This is what you do.” And you just kind of have to judge where the person is at. If they have the basics down, then you start--then you go into the more advanced stuff.

Time-limited supports

One provider administrator described how her agency provided time-limited one-to-one supports to teach individuals new skills that would then allow them to participate in community activities with less ongoing support. Another provider offers a weekly group, where individuals can work on independent living skills such as cooking and managing a community garden. This initial investment in building human capital makes it easier to fade supports in the longer term.

Peer-to-peer activities

Another provider administrator described how they emphasized that individuals “learn to take the buses, learn to problem solve, all those things in the community.” The same service provider sometimes used peer-to-peer strategies, such as having a person with more mastery of a particular skill (such as riding the bus) teach someone who was learning that skill. Another administrator described this as beneficial in multiple ways:

[The individuals are] also learning about teamwork and leadership skills, and we find that having them help out each other versus having us talk to them about everything really builds their self-confidence, and also is maybe to an extent less embarrassing if their friends are helping them with something than if we’re helping them... So we find that we can really use the peer connection…

Teaching human capital skills that increase community access

In general, transportation skills were cited as another key area of learning, which increases human capital as it relates to both community access and employment. As one provider administrator explained:

We help them to figure out how are they going to get someplace using their resources so that they’re not reliant on [our staff] to get there. We do…with some people who are more significantly disabled, provide support and assistance in getting people places…the community instructor will go to the person’s house and pick them up. But they take public transportation. They don’t pick them up in their cars or anything.

A state agency administrator described Community Life Engagement as being “a great companion and wraparound service so that people who are working can continue to develop skills in the community. … a way to support people to really just continue to build skills in natural settings.” The skills gained can range from soft skills, such as being at work on time or communicating well with coworkers, to hard skills, such as chopping garlic or operating a cash register.

Intentionally fading supports

Successfully repeated tasks increase the confidence of the individual, which makes the fading of supports easier and much less jarring. As one individual said:

When I got into the habit of knowing what my job was and knowing that I could do my job, they just faded out on me. And I didn’t need a job coach after that. So now I’m kind of without a job coach… It works out pretty good. I know if I ever need any help or if I’m stuck somewhere where I’m not for sure on something, there’s always a coworker that’s right there that’ll help me out.

Because many individuals have relied on paid supports for so long, they may have to be convinced that they can learn self-sustaining skills. As one direct support staff member said: “People get very dependent upon their supports. And if they've had them once, it's really hard to teach them that you maybe needed that support and now you really don't.”

As individuals make more connections in their communities, the social capital they are building can be used to create natural supports. Tapping into this social capital as a source of natural supports then leads to a level of interdependence with others in the community that helps with the enabling fading of formal, paid supports. One provider administrator described this process as “not necessarily about the person becoming more independent [but] just as much about creating an intentional community around somebody.”

Creating opportunities for natural supports can enable individuals’ participation in activities without a paid support person. This stretches service dollars, as well as permitting a more natural and sustainable interaction and participation between the individual and others in their community.

Workplaces can be one important source of natural supports. One direct support staff member helped an individual create a photo album of her co-workers so that she could remember their faces and the tasks they performed should she have any questions about her job. A staff coordinator spoke about a connection that was made between an individual and his coworkers based on mutual interests that led to the inclusion of the individual in non-work-related activities:

Some of the other guys there are really into sports and wrestling as well, and they actually pick him up from his house … and drive to San Jose when they have the big… tournaments, yeah. And so they like go, like this is at night or on the weekend, not work related. They have no obligation to [him] at all and they’re including him.

The same quality of connections can be made in volunteer jobs. Another provider administrator described an example of natural supports where repeated volunteering at the same place has lead to workplace friendships where long-term volunteers help direct the individual about which tasks are to be performed that day:

She works in the kitchen, and she works with a bunch of other volunteers and it's the same people who show up every Thursday, so she's got [two friends] at this point because they've been coming for probably eight years... And so she walks in, they put their aprons on, they're usually like, “Come on…we're going to peel carrots today.”

In this way, the social capital generated through ongoing community membership at the volunteer site was leveraged as natural support to decrease the need for staff resources.

Community connections have also been made through encouraging the pursuit of individualized interests outside the workplace. Theater and art are noted as two areas with deep roots in most communities, with many opportunities for participation. Taking an art class or working on a play are both ways to develop relationships. So is any activity that leads people to spend time at the same place or with the same people, week after week.

To quote one provider director: “If you go to the same places all the time then you get to know people. You go to the coffee shop and get your coffee every morning; before long they know who you are, and it's not any different than the folks that we support.”

Faith-based organizations were cited as another example of entities in most communities that offer numerous opportunities for community connections. A provider administrator described an individual being supported by social connections built within the church community, and how this created ongoing community engagement without the need for formal supports:

One situation I'm familiar with is where one of the members of the church swings by to pick up the individual at their home and takes them to the church service and the following activities, then brings them back. And there's no staff.

Importance of focusing on relationships

However, presence at activities does not guarantee the quality of relationships or satisfaction of the individual. It remains important for paid staff to inquire about the quality and consistency of each individual’s relationships, as well as any areas where skill building should be reinforced so that the individual can more fully and independently participate. One director offered an example of an individual who attends a weekly community activity:

…she goes to Beano every week, and she's perfectly capable of looking at 26cards at once and figuring it out. But because she does that and she gets there on her own, or maybe we even drop her off, we don't know, who does she sit with, who does she talk to. … I think we at least need to be a fly on the wall to say, “Who does she have a snack with? Who is she communicating with? … Is she even having any social relationships?

Guidepost 3 Promising Practices

TranCen, Inc.’s WorkLink program of California and Seeking Equality, Empowerment, and Community (SEEC) of Maryland implemented Guidepost 3 in an effort to build human and social capital and decrease dependence on paid supports.

Use the sidebar on the left to read their stories.

Transcen Skill Building

Heike Boeltzig-Brown

Background

WorkLink is a program that enables individuals with intellectual and developmental disabilities (IDD) to work while receiving wrap-around day services. Having access to both types of supports -- community employment and Community Life Engagement (CLE) -- is particularly important for individuals with significant IDD, who often work fewer hours and need additional support to lead active and meaningful lives. The program was started in 1996 by TransCen, Inc., and is based in San Francisco, California.

Day services not only help individuals establish and maintain meaningful community relationships, but also let them build important skills as they explore vocational goals and job options. To this end, WorkLink partners with numerous community organizations to create opportunities for engaging individuals in targeted volunteering and other skill-building activities.

As of January 2014, WorkLink supported 60 people with disabilities, including 39 individuals with IDD. Of those 39, 24 received both employment and day services, and 15 individuals only received supported employment.

Implementation

Engaging individuals in volunteering for skill building

Individuals can decide what their goals are and the supports they need. WorkLink’s services are 100% community-based. The agency uses “community day learning services” for vocational discovery and teaching employability skills, maintaining social connections, and supporting other non-work needs.

Day services encourage individuals to build self- confidence and be independent, that is, to see that they can do many things by themselves (such as visiting a friend’s house), and that they can have regular lives. CLE helps with this by engaging individuals in community activities, including targeted volunteer activities in the community.

Through CLE, people explore new possibilities, learn and refine skills, and become more independent. Over time, these services are intended to fade, and are only used for those that need them most.

“Our services are not about field trips or ‘visiting places’ -- they are about skill building. We go to community sites routinely, multiple times, so we can use these as teaching environments, not just outings. We focus our service hours on helping people to not only connect with others, but to play a valued role in their communities (through volunteer work). We want them to build social and professional networks. We’re looking to encourage inclusion and friendships -- not just be in the community. This does not happen by visiting a place once or just buying a cup of coffee.”

Sara Murphy, director of WorkLink

CLE helps individuals become more involved in their communities through volunteering and community classes. These activities help them understand what it means to participate and contribute to their communities. At the same time, other community members without IDD start seeing these individuals as value-adding citizens, not just recipients of services.

WorkLink’s CLE programming benefits from the organization’s location near multiple centers of community activity. WorkLink uses these resources for skill building, and partners with community organizations to develop volunteering or training sites. For example, individuals can learn clerical and computer skills at AIDS Walk San Francisco, cooking and food service skills at Project Open Hand, and sorting and assembly skills at the San Francisco Food Bank.

These volunteer experiences offer a real-world opportunity to practice social skills with people who are not program staff or teachers. For example, Project Open Hand provides nutritious meals to seniors and critically ill people. This organization uses 1,400 volunteers every year from all over the region, so regular volunteers from WorkLink are always working alongside new volunteers, in addition to the people they see every week.

Using small groups to support shared interests

Due to funding limitations, the majority of WorkLink’s CLE supports are done in small groups. WorkLink assigns community instructors to groups of 3-4 individuals based on type of CLE activity, while keeping the group focused on what the individuals want to learn.

Once individuals with a shared interest have been identified, WorkLink staff brings those individuals together and works with them to develop activities. Only after an initial plan has been established does WorkLink bring in a community instructor to facilitate the planned activities and manage the group’s schedule.

Activities are developed with and around individuals, instead of leaving everything to the instructors. WorkLink staff believe that group models can encourage socialization and friendships among individuals in a natural way. Individuals see each other socially after work, and a few even date and have romantic relationships.

Opportunities for individuals at WorkLink often arise out of other people’s interests. For instance, if an individual wants to learn how to knit, a staff member will seek out a community class or store that offers lessons, and then post that opportunity, along with an invitation for other individuals to join the activity, at WorkLink’s notice board. These communal opportunities allow individuals to develop hobbies, and to work on job skills and their personal goals alongside friends and community members.

Providing travel training to ensure independence

WorkLink’s office, which serves primarily as a meeting hub for individuals and staff to check in before they head off to their activities, is in the heart of San Francisco. It is accessible by multiple train and bus lines. If individuals need it, they get travel training through WorkLink’s “Let’s Get Lost” program (see WorkLink’s “Independent Travel Policies and Procedures”).

The goal of “Let’s Get Lost” is to train individuals to travel independently and safely in the community. At intake, the individual and family complete a community skills inventory that includes community safety skills. If they are completely independent, they sign an independent travel affidavit and do not receive travel training except on new routes.

For individuals who need it, travel training is provided by community instructors and job coaches. Individuals enroll in a “Let’s Get Lost” group. Community instructors check skills in 7 competency areas, and use the results to create “Community and Safety Goals” that are incorporated into the individual’s service plan.

The 7 areas are: 1) managing belongings, including carrying ID and emergency contact card, 2) crossing streets, 3) being aware of “stranger danger,” 4) navigating on specific routes or city-wide, 5) contacting WorkLink and family members using a cell phone, 6) asking for assistance when needed, and 7) following emergency procedures and planning for disasters.

Progress is tracked using data sheets, and supports fade over time. Periodic meetings are held with the program manager, the individual, and their family to review progress and fading of travel services.

Impact

WorkLink re-conceptualized day services and CLE in a way that ties these services more closely to employment. This encourages individuals with IDD to consider work, aiding them with vocational discovery and skill building, and providing support that wraps around their work schedules. For example, one individual learned how to use a heat sealer at Project Open Hand and is now employed at a gourmet grocery store packaging produce. Access to comprehensive wrap-around services also enables them to lead active, meaningful lives that include community integrated employment.

Suggestions for Replication

Use community resources as a teaching environment for skill building. WorkLink uses community resources to engage individuals with IDD in focused, strategic activities (including volunteer opportunities) to build the skills needed to work and be successful. The primary goal of these services is working towards individuals’ independence, so they can pursue community employment and life engagement.

Provide travel assessment and travel training as a core support (as part of each individual support plan). Providing travel services and supports is critical to individuals’ independence and their ability to pursue community employment and life engagement. To this end, WorkLink established clear policies and procedures and translated those into worksheets that guide staff in implementing these policies and procedures on an individual basis.

For more information

Sara Murphy, Director, WorkLink: smurphy@transcen.org

TransCen, Inc. website:http://transcen.org/

Murphy, S., Easterbrook, E., Bendetson, S., & Lieberman, S. (2014). TransCen, Inc.’s WorkLink program. A new day for day services. Journal of Vocational Rehabilitation, 40: 125–130.

WorkLink Independent Travel Policies and Procedures, internal document available upon request from Sara Murphy, Director, WorkLink:smurphy@transcen.org

SEEC Fading Supports

Jennifer Sulewski

Background

SEEC (Seeking Equality, Empowerment, and Community) is a Maryland-based provider of employment, community living, and community development supports to people with intellectual and developmental disabilities (IDD). Originally established in 1987, SEEC started converting from facility-based to exclusively community-based supports in 2005, and closed down its center-based program completely in 2009. Currently all of SEEC’s supports are individualized and community-based, in keeping with the organization’s mission “to support people with intellectual and developmental disabilities to direct their lives with dignity, choice, authority, and responsibility.” SEEC provides supports to over 200 people with IDD throughout Montgomery County and the District of Columbia.

Like many providers of individualized supports, SEEC has had to find creative ways to individualize supports even though its funding structures do not support 1:1 staffing. One way they do this is by deliberately building both human capital (community living skills) and social capital (relationships in the community). As skills and relationships are built, paid supports can be faded, thus making more efficient use of resources in the longer term.

Implementation

SEEC uses two strategies to enable fading. The first is building human capital or skills to reduce support needs. This may require an up-front investment of more intensive supports, as described by executive director Karen Lee: “If there’s somebody who we believe will be able to do a part of their day without any support, we will put one to one support to give them the training they need to get there. So [for example] travel training is done one to one.” By finding the resources to invest in this 1:1 training for a limited time, the overall need for staff support is reduced, providing more freedom to develop an individualized day for the individual.

The second strategy is to build connections in the community, so that “their community that they’re now a part of begins to embrace them and play that role that staff often has done.” Community members, such as instructors or fellow participants in a class or club, are often happy to serve as natural supports, in the same way a supervisor or coworker may provide natural supports on the job. If the relationship is deliberately set up, the natural support can also have a contact to call at SEEC if there is a problem. This strategy enables a shift in mindset from focusing on how independent the individual is capable of being to “creating an intentional community around somebody.”

Impact

Most people supported by SEEC still require at least some level of staff support. Of the 90 people receiving Community Life Engagement supports from SEEC, only about 10% go through their whole day without staff involvement. However, staff supports can be tailored to individual support needs, changing throughout the week as needed by the individual. Natural supports enable staggering of staff supports. For example, let’s say that José and Bianca are both receiving CLE supports from SEEC. A staff member might drop José off at a job or activity where he doesn’t need support, and go to the gym with Bianca at the same time.

The success of this strategy is best exemplified in individual success stories, such as these two examples:

Success Story #1: LA Fitness

For Joe, the closure of SEEC’s facility-based program gave him a chance to re-think the structure of his days. Previously, Joe had spent his days in and out of the center, doing some community-based work and other activities, and spending some time at the center. During this time he was almost always with a staff member.

After the center closed, Joe was supported to create a more individualized, more independent structure to his days. Support staff helped him to join a local LA Fitness center and connect with a trainer there. They trained him how to access the fitness center on his own, and how to use public transportation to get there from his home.

Now Joe takes the bus to the fitness center on his own, goes swimming, exercises, and then walks to a pizza shop for lunch. In the afternoons he goes to work or volunteers at a local food pantry. As described by Karen Lee, Joe “no longer is with groups ever. He’s always just kind of got his daily schedule worked out.”

In addition to being more independent, Joe has developed relationships with community members at his job and volunteer job. He “has a real presence in the community as well as a job that all resulted from him not being in a segregated center doing his fitness or going to a separate class, a disability aerobics class or something like that, but from being a part of his community.”

Success Story #2: Chess Club

Mike’s support staff thought he might enjoy learning chess. The staff found a local chess club and went with him to the chess club for a few weeks to get him started. They also provided him travel training on how to get there on his own.

Once Mike had started to learn the routine, was comfortable with the culture of the chess club, and knew how to get there on his own, staff pulled back from attending regularly with him. At the same time, they established contacts at the rec center that hosted the club. Mike’s support staff opened a line of communication so the rec center staff would know who to call at SEEC if there were a problem or if Mike didn’t arrive at his usual time.

“We made sure the people at the rec center knew who to call if he doesn’t show up or if there was a problem. We also had to create a nearby back up staff to call if something did happen. So this process takes a lot of steps to ensure it is set up correctly.”

Now Mike participates regularly in the chess club on his own, with limited need for staff support.

Suggestions for Replication

Commit to providing exclusively community-based supports. Closing its facility-based day program and selling the building was an important turning point for SEEC. It forced staff to think creatively about how to build individual lives fully in the community, without relying on the center as a fallback or base of operations. The additional resources used to support a building now support things like technology and increased staff supports.
Deliberately build relationships in the community. On the individual level, this involves creating ongoing opportunities for interaction, such as Joe’s regular schedule at the fitness center or Mike’s consistent participation in the chess club. On the organizational level, SEEC also builds relationships with community resources such as local recreation centers, art centers, and community colleges. Based on these relationships, people at these community resources are comfortable supporting individuals and contacting SEEC if there is a problem.
Always start with one person at a time. This strategy requires a change in mindset from thinking of staffing as a fixed ratio or groups. An individual’s support needs are unique and can change with time as new skills are built and relationships formed.
Invest up front in order to fade in the long term. An initial investment in setting up a good situation can pay off in the ability to fade supports and reallocate those resources to the next person. This enables each person to have a more individualized schedule, even without ongoing 1:1 supports.

For more information

Jennifer Sulewski, jennifer.sulewski@umb.edu

Karen Lee, klee@seeconline.org

SEEC website: http://www.seeconline.org/

Guidepost 3 Additional Resources

Use the sidebar on the left to access a selection of resources that promote Guidepost 3: building human and social capital in order to decrease dependence on paid supports.

Connecting to community members

. This manual, written for agency staff, provides ideas for how to help people with disabilities increase community membership and belonging and promote relationships with community members

Natural Supports at work

a story about a woman who uses her natural supports at her job to gain a more meaningful employment experience.

Guidepost 4: Outcome-oriented and regularly monitored

This section focuses on Guidepost 4: Ensure that supports are outcome-oriented and regularly monitored. In order to achieve outcomes such as life satisfaction, community membership and contribution, and decreased dependence on paid supports, CLE supports must be oriented toward, and monitored on, those outcomes. Toward this end, service providers and state IDD agencies must:

Emphasize goals rather than processes
Hold CLE supports to clear expectations and guidance
Expect CLE to lead to or complement employment
Use data to guide continuous improvement

Use the sidebar on the left to access an overview of Guidepost 4, two promising practices from providers that illustrate how to implement the Guidepost, and a set of additional resources for further consideration.

Guidepost 4 Overview

Originally published in 2017 as .

Introduction

This chapter describes in further detail Guidepost 4: Ensure that supports are outcome-oriented and regularly monitored.

In addition to further description of the guidepost, we present examples of how this guidepost is being implemented by service providers. These examples are drawn from expert interviews and from case studies of exemplary providers of CLE supports, described in more detail below.

Ensure supports are outcome-oriented and regularly monitored

In order to achieve outcomes such as life satisfaction, community membership and contribution, and decreased dependence on paid supports, CLE supports must be oriented toward, and monitored on, those outcomes. Toward this end, service providers and state IDD agencies must:

Emphasize goals rather than processes
Hold CLE supports to clear expectations and guidance
Expect CLE to lead to or complement employment
Use data to guide continuous improvement

Emphasize goals rather than processes

Interviewees emphasized the importance of focusing on individual goals and outcomes including satisfaction, individualization, and connectedness to community, rather than on process measures such as times and locations of activities. Each case study location used data collection methods such as daily shift logs, monthly reports, quarterly reports, and annual reports to track each individual’s progress. As part of the emphasis on goals, interviewees described the importance of collecting detailed and descriptive individual data and engaging individuals in assessing progress and satisfaction.

Collecting detailed descriptive individual data is essential to be accurate about measuring goals. As one provider administrator explained, it’s important to “make it measurable and make it visual…so that people are not writing ‘Johnny had a good day’ every day.”

Another administrator described the need for detail and description, but complemented with specific tallies of outcomes such as interactions in the community: “Besides just measuring what actually happens during a service period…you could measure how many times there might be an interaction between a person served and community members…(plus) whether those interactions during the service day end up resulting in interactions outside of the service day.”

Similarly, a staff member explained how collecting detailed data regarding task analysis enabled the organization to monitor each individual’s unique progress towards their goals and the extent of the human capital built:

We just switched over to a task analysis system, which is great, where we tally how many verbal prompts we gave, how much modeling we did, how much gesturing we did, all this stuff. So we can closely monitor the progress through the course of a month, through the course of a year, through the course of four years.

Through such data collection and analysis, providers not only assess progress toward goals and the level of human capital built, but also can ensure supports are being properly faded, as described by a direct support provider:

And so we do it daily by logs, and then we do a monthly summary, a monthly report…where we can check their progress and give it to our supervisors and then the service coordinators…so they can monitor their progress as well. …. And then at the end of the year, goals might need to be tweaked, or, if somebody is completely independent, which best case scenario, just drop the goal. If they can do it on their own, you know, we don't even want that to be a goal for them anymore, and work on something else.

Provider administrators explained that in addition to using data to assess individual progress towards goals, they use data collection efforts to engage individuals in this process as well:

Everything from going to the gym and taking their weight once a month and then they graph it so that they (individuals) can see if they’re gaining or losing, number of laps in the pool, stuff like that. And I think it really tightens up the instruction, really keeps it goal focused, and then we know when…they’ve learned it, it’s pretty obvious and we can move on to something else. We kind of say, “Look at you. Look at you go,” and it’s much more reinforcing and fun than just going to the gym and working out and not knowing what the benefit of it is.

Engaging individuals in collecting their own data toward goal attainment has become an interesting incentive in one case:

We’ve had people sit in their meetings and say, “I’m going to be a 5 [out of 5 on the goal attainment scale] on the bus. I’m riding the bus by myself,” and really fighting back against their parents who are saying, “No, you’re not.” They just want the 5 in the box. So it’s a really interesting little tool and we’ve seen it really change the tenor of the meetings too. And it also helps us to really plan and do goal setting that is meaningful and keeps them moving forward.

One of the case study sites extends the individual engagement one step further to the community. Because they are in a very small town, this organization locates and asks community members to comment on the community contribution and social roles of the individuals. This organization values not only the staff, but also the community’s feedback that further improves its performance and thus its outcomes. In this sense, both the organization and the community as whole make an effort to improve CLE supports and identify CLE outcomes contributing to individuals’ success.

Hold CLE supports to clear expectations and guidance

While the Centers for Medicare and Medicaid Services (CMS) have stated an expectation for individuals receiving home and community-based services to be engaged in the life of their communities, clear guidance on how to do so has not yet been provided either at the federal level or by most states. Interviewees expressed concerns about this gap. As one provider administrator said, “Right now [CMS is] doing a pretty decent job of saying those words, but they’re not putting any meaning behind them, so there’s no guidance coming as to what the expectations from the funding source is.”

A state agency leader encouraged state IDD agencies to become proactive, thoughtful, and prepared in advance, asking for

…very robust, thought-out requirements, in the sense of what is your evaluation requirement; what’s your expectations for programming and planning; what’s your expectation for reporting; how are you going to monitor and evaluate the quality...

In the absence of clear state and federal guidance, service provider agencies have relied on their own organizational values in developing outcome-oriented goals and the standard for quality of CLE supports. All three of the case study providers operate from a belief that individuals with IDD can and should have lives similar to those without IDD. The focus is on achieving, in the words of one administrator,

regular lives. Typical lives…you want to have a home of your own, you want to have a job that you enjoy, you want to have friends and relationships, and that’s the standard that we should have for people that we provide supports to.

Said a manager from another provider, “Since we're so strong in believing that people should work in the community, it just fits perfectly with that … community life engagement policy. We really don't support any segregated anything.”

A staff member from another provider said, “If you look at any of the other firms, we are standing for independence, where a lot of them are [still standing for] sheltered work.”

Expect CLE to lead to or complement employment

In order to achieve meaningful CLE outcomes such as life satisfaction, community membership and contribution, and decreased dependence on paid supports, high-quality CLE supports must either complement or lead to employment, and be monitored on this outcome as well. This emphasis on employment was consistent across all our interviewees. As one state agency leader said:

It really ties back to…a real outcome focus, and that outcome… is looking out further than just that immediate activity or skill that they're trying to learn, but it's really got a long‑term goal in mind, in the sense of helping somebody become a real included member of the community or part of a community group or leads to a volunteer opportunity or leads to employment…

Similarly, others explained their ongoing prioritization of employment. One provider administrator said:

[Our state] is an Employment First state, [we are] very involved in that effort. And so there’s an intense discussion during the planning with people about employment, and we don’t ask the question, “Do you want to work?’ It’s, “Would you like to earn some money doing something you really like to do?"

Another provider administrator described CLE as being “an entry portal to work through exploring volunteer opportunities, [and\/or] discovering the nature of certain kinds of demands.” Another stated how at their organization, each individual’s CLE goal is “usually tied to a goal of getting either more employment or a different kind of employment or a way of easing into employment for people who have never ever worked at all. It has an employment goal at the end.”

A staff member likewise described CLE as a “kind of forerunners really for employment, for people to be developing kind of concrete skills, but also developing a sense of what work is and how they need to present themselves and how they need to relate to other people.”

CLE activities can also be used to build networking opportunities or as a form of exploration to discover the individual’s interests, strengths, and challenges, all of which leads to employment. One provider administrator pointed out that sometimes individuals “might have an idea of what they want to do, but unless they’ve had experience they might not know what it actually means to do that [job].” For example, using CLE supports for volunteering enables individuals to explore and discover their career choice and preferences, and how their own job expectations might differ from actual work tasks. Another administrator from the same provider explained, “that’s like a huge benefit to integrated work…So that’s more discovery that we use when shaping the job search.”

Use data to guide continuous improvement

Interviewees described the importance of not only collecting data, but also using it to identify support gaps, guide training needs, and monitor quality. They explained that using data collection techniques such as shift logs, which illustrate the individual’s progress as well as intervention strategies, often becomes the basis of further training. Organizations used data not only to review the individual’s progress towards their goals, but also to identify and address gaps in supports and areas for staff improvement or to identify effective strategies that can be implemented again.

Similarly, agency management noted that staff meetings could provide an important opportunity for staff to review and track progress, monitor quality, and discuss strategies for improvement. One provider staff member described using weekly meetings to “talk about annual goals for the upcoming annual meeting for a certain client.”

An administrator from another provider spoke about using staff meetings to track progress on goals:

We're not out there looking over their shoulder, so we know what their documentation says. We know what the planning process is like. But, in terms of the day-to-day real execution of that, we're not there. And so a lot of things happen and get discussed in staff meetings.

In this sense, the staff meeting became an important vehicle to monitor and regulate supports, staff needs, and individual progress.

Having unscheduled site visits by supervisors was another strategy for monitoring how services and support were delivered to individuals, as described by a provider manager: “There are a lot of check-ins and randomly stopping in to see how things are going. It’s not necessarily planned ahead of time.” This organization also monitors the staff’s performance by reviewing the data collected on individuals’ progress.

Furthermore, case study participants explained how they shared outcomes with board members to highlight success and maintain buy-in. One provider had what their organization called “mission moments” at monthly board meetings, whereby staff offered a brief presentation of an accomplishment that warrants celebration:

… we require our staff, as part of their performance appraisal, to give us a success story annually. So many times they write about an individual that they’ve worked with, how they felt like they made a difference. And sometimes they just write about themselves and how working here has made a difference…

While not considered a hard data collection activity, taking small steps to actively document individual and organizational progress is a way to share accomplishments with board members, reinforcing the organization’s investment in individualized, community-based supports.

Guidepost 4 Promising Practices

TranCen, Inc.’s WorkLink program of California and Seeking Equality, Empowerment, and Community (SEEC) of Maryland implemented Guidepost 4 in an effort to ensure that supports are outcome-oriented and regularly monitored.

Use the sidebar on the left to read their stories.

Transcen Braiding Services

Heike Boeltzig-Brown

Background

WorkLink is a program that braids community employment and life engagement services. The goal is to enable individuals with intellectual and developmental disabilities (IDD) to work while receiving wrap-around day supports, as needed. Started in 1996, WorkLink is a program of TransCen, Inc. and is based in San Francisco.

WorkLink clients do not have to give up day supports when deciding to pursue work. In addition to helping individuals establish and maintain meaningful community relationships, day supports are used to discover and explore vocational goals and job options. This information then helps guide individuals’ employment planning process.

At WorkLink clients receive individualized combinations of community employment and life engagement services, support plans are built based on needs. Clients can receive a maximum of 30 hours of community support per week. As of January 2014, WorkLink supported 60 people with disabilities, including 39 individuals with IDD. Of those, 24 received both employment and day services, and 15 individuals only received supported employment (SE).

Implementation

The impetus for the new integrated service model. Until 1998, WorkLink only provided SE services to individuals with IDD. WorkLink leadership realized that, when individuals with IDD want to work, they often have to choose between community engagement and integrated employment. Having access to both types of supports is particularly important for individuals with significant IDD, who often work fewer hours and need additional support to lead active and meaningful lives.

To ensure that individuals who go to work stay connected with their friends and community, and to address vocational discovery and the difficulty individuals with more significant IDD face in accessing employment services and supports through the public vocational rehabilitation (VR) program, WorkLink leadership created a program that braids state IDD-funded community life engagement with state VR-funded customized employment services. All WorkLink clients who receive day services must have an employment goal, and community employment is a shared focus across all WorkLink programs.

Creating a more integrated and customer-friendly service model. In 1998, WorkLink established an hourly rate for day services and did away with set day program hours and required attendance, enabling individuals to decide when and for how many hours they needed day supports. WorkLink’s services are 100% community-based and use “community day learning services” for vocational discovery and teaching employability skills, maintaining social connections and supporting other non-work needs.

The primary goal of these services is to develop a personal profile for each individual that includes an employment goal. This is achieved by engaging individuals in targeted volunteer activities in the community through which they can explore new possibilities, learn new skills, refine existing skills, and become more independent.

“Our services are not about field trips or ‘visiting places’ — they are about skill building. We go to community sites routinely, multiple times so we can use these as teaching environments, not just outings. We focus our service hours on helping people to not only connect with others but to play a valued role in their communities (through volunteer work). We want them to build social- and professional networks. We’re looking to encourage inclusion and friendships — not just be in the community. This does not happen by visiting a place once or just buying a cup of coffee.”

Sara Murphy, director of WorkLink

Key to this integrated service model is effective staffing and the coordination of services across different teams. WorkLink has two staff teams: a community support team (5 community instructors) and an employment team (3 employment specialists). The latter incudes both job developers and job coaches. The teams work closely and collaboratively. Physical co-location of both teams and a weekly “all hands” meeting reinforces this.

How does it work at the individual level? As part of their day service experience, WorkLink clients complete a person-centered discovery and profiling process with the help of the community instructors. WorkLink maintains an average of a 3-to-1 staff-to-client service ratio. Community instructors assess individuals’ interests, skills, and abilities by engaging them in a range of community volunteer activities and classes to identify an employment goal.

“Community day services are used to identify a person’s skills and interests and to explore different work options. The goal is to determine where the person will be most successful, where that person would really sparkle. We then braid in our supported employment services team. The community instructors inform job developers on what the person has shown interest in and the environments he or she prefers. Together, they figure out what might be the best possible job options. Then the employment team develops the position and provides coaching and follow-along supports at the job. Community support needs are then re-evaluated and re-configured to fit the person’s work schedule and non-work needs.”

Sara Murphy, director of WorkLink

Once the person’s skills and employment goal has been determined, the employment team starts the customized placement process by opening a case with VR. The job developer initiates this process and develops a job placement plan (supported with VR funds). Community support services continue during the placement phase. Community instructors work collaboratively with employment services and the individual to continue building skills and confidence in the community while the employment services team follows up on the employment ideas identified during the discovery process. Job developers work one-on-one with the job seeker.

When a position is identified, the placement specialist involves a WorkLink job coach (supported with VR funds) who then works with the individual post-placement. The community instructor remains involved throughout the process, although at a less intensive level. Depending on their work schedules, preferences, and needs, people can continue to receive day supports at a reduced level or may choose to only focus on work.

Like day supports, job-coaching hours are tied to individual needs. As individuals settle into their new job and become more comfortable, the job coach slowly fades support. When individuals have stabilized in their new jobs, VR closes the case and refers the individual for extended job coaching services to the local IDD agency, the Golden State Regional Center. The regional center social worker reevaluates the individual’s support plan and adjust the job coaching and community support hours as needed.

Impact

Braiding community employment and life engagement services and tailoring them to individual needs has made supported employment more viable for individuals with significant IDD. Access to comprehensive wrap-around services enables them to lead active, meaningful lives that include community integrated employment.

WorkLink’s individual employment outcomes speak for themselves. WorkLink clients who receive braided (day and employment) services work on average 38 hours per month, and earn an average competitive wage of $12.18/hour. Sixty-three percent are still working after three years, and 55% after seven years (Murphy, 2013).

The new service model has helped WorkLink to bridge programmatic barriers, address service gaps, and respond to customer needs. It has also helped streamline placement services. WorkLink job developers rely on community instructors to do most of the vocational profiling and to teach community and employability skills. Job developers can hit the ground running thanks to the work that is done by the community instructors.

Finally, the focus on person-centered services and a braided team approach to service delivery has also had a positive impact on WorkLink’s organizational culture. It has created an “all for one/one for all” mentality within the office and allows the staff to work collaboratively in creative ways to support the needs of each WorkLink client.

Suggestions for Replication

• Incorporate a work focus into day services. WorkLink re-conceptualized day services in a way that ties them more closely to employment. This encourages individuals with IDD to consider work, aiding them with vocational discovery and skill building, and providing support that wraps around people’s work schedules.

• Use funding and funding structures creatively. WorkLink braids IDD-funded day services with VR-funded employment services in a way that allows individuals with IDD to seamlessly use and tailor various services and supports to their changing needs.

• Use community resources as a teaching environment for skill building. WorkLink uses local community resources to engage individuals with IDD in focused, strategic activities (including volunteer opportunities) to build the skills needed to work and be successful in today’s world. The primary goal of these services is to set clients on a path to employment.

For more information

Sara Murphy, Director, WorkLink: smurphy@transcen.org

TransCen, Inc.

Murphy, S., Easterbrook, E., Bendetson, S., & Lieberman, S. (2014). TransCen, Inc.’s WorkLink program. A new day for day services. Journal of Vocational Rehabilitation, 40: 125–130.

Murphy, S. (2013). Employment First: A new day for day services (PowerPoint presentation). Retrieved from http://vermontapse.org/yahoo_site_admin/assets/docs/Employment_First_A_New_Day_for_Day_Services.30095825.pdf

Murphy, S. Meaningful day services: Putting people on the path to success (webinar recording). Retrieved from http://www.ohioemploymentfirst.org/view.php?nav_id=189

SEEC Mobile Communication

Oliver Lyons

Background

Currently, all of SEEC's supports are individualized and community-based, in keeping with the organization's mission "to support people with intellectual and developmental disabilities to direct their lives with dignity, choice, authority, and responsibility." SEEC provides supports to over 200 people with IDD throughout Montgomery County and the District of Columbia.

Because SEEC has no central facility, having ways to maintain contact between staff and management is paramount. From prepaid cell phones in 2005 to outfitting every staff member with a tablet or a laptop today, SEEC has embraced mobile communication since it started its conversion. By pursuing non-disability-specific grants and reallocating resources, SEEC is able to maintain a mobile organization.

Implementation

Once SEEC began offering community-based supports, management needed a way to check in with staff. Starting in 2005, SEEC would purchase low-cost prepaid cellphones with unlimited texting for field staff in order to keep in touch. The more SEEC staff was out in the community with individuals, the more they had stories they wanted to share with management and other staff members. However, their basic cellphones lacked the ability to photograph with any clarity, and those photos were unable to be shared. The executive director approached the Verizon Foundation about their need for more effective mobile communication and increased photo capacity, and Verizon responded by outfitting SEEC's staff with iPhone 4s.

Though the iPhones had been paid for, they still needed cellular and data plans. Because SEEC was in the process of moving towards completely community-based services, funds that had once been budgeted to maintain their building could now be shifted to maintaining their mobile technology. However, even with the iPhone's more modern camera, staff still found it difficult to text the pictures they wanted to share.

SEEC's IT department suggested to instead upload their pictures to the shared app Photo stream. SEEC implemented in-house training on how to use Photo stream. Because all SEEC staff have iPhones and access to SEEC's photo stream site, an internal competition sparked staff interest in sharing the best pictures and stories. These stories are not just kept internally; they are shared when SEEC staff presents at conferences or when giving tours to prospective families to highlight the community services offered.

Impact

SEEC's use of mobile communication extends beyond showcasing individual stories. In addition to monies from the Verizon Foundation, which is now a regular funder, SEEC accesses four separate technology grants. These diversified grants not only decreased dependence on IDD services funds, but also has allowed SEEC to outfit all staff with Windows tablets in addition to iPhones, while managers receive laptops.

Staff currently use the Carematic app, which allows them access to their case notes and program books while out in the community without the burden of carrying around many confidential files. SEEC has also begun using Office 365, which allows for easy file sharing across all staff and provides each staff member their own email address. As SEEC has no central facility, managers in the office now simply check in with their staff out in the community every morning via email.

Though SEEC is using the latest mobile technology, they still strive to increase its use. Their goal is to get iPhones and tablets in the hands of everyone they support. They have encouraged parents to purchase tablets for their children, or to use a Maryland-specific communication program, Maryland Relay, that provides free tablets to those individuals who cannot use common communication devices such as cell phones and who meet specific financial requirements.

SEEC stresses the free safety features available on these tablets, such as Find My Friends, an app that allows a user to track a shared user's location and movements. These features can provide peace of mind to parents and management when individuals are out in community settings. Staff has also begun being trained on iMovie so they and the individuals they support can start creating and sharing movies about their activities in addition to photographs.

When asked how to go about increasing mobile communication at a provider site, SEEC's executive director had the following advice: "Start with the people who know how to use this technology and who like to use it. Then have them share their experiences about what the device is capable of with others to get them interested. In addition to trainings, you want your staff constantly interacting with their device to learn how to best use it, so don't discourage gameplay and social media. But start small with the people who are already well-versed in order to create the greatest amount of success."

Suggestions for Replication

Reallocate existing resources to accommodate mobile communication and investigate new funding opportunities. What resources could be replaced with a mobile device? If staff no longer had to drive to the facility to check in before going out into the field, could the money saved on gas reimbursement be invested into a company phone? Could the money spent on secure storage and disposal of paper documents be spent on a tablet with a dedicated app instead? What technology-specific grants could benefit individuals with disabilities? Keep in mind that these grants are often less competitive than ones established specifically to aid those with disabilities.
Have tech-savvy staff tout the benefits of mobile communication to everyone on your staff. Start by outfitting your most technologically experienced staff, and have them demonstrate the abilities of their device to other staff members with less technology experience. Have them explain the benefits of having a mobile device out in the field: the ease of communication, the lack of paperwork, etc. Let the less experienced staff play around with the device to help them get excited about using one themselves.
Take full advantage of built-in or low-cost applications on the mobile device to increase communication. Almost every mobile device has a built-in camera for photographs and videos. Use those to share individuals' community experiences internally and with potential consumers and their families. Use free apps like Find My Friends to keep track of where your staff is at all times from any location. Use the device's free texting app or free, web-based email for mass communication.

For more information

Oliver Lyons, Research Study Coordinator, Institute for Community Inclusion: oliver.lyons@umb.edu

Karen Lee, Executive Director, SEEC: klee@seeconline.org

Guidepost 4 Additional Resources

Use the sidebar on the left to access a selection of resources that promote Guidepost 4: ensuring that supports are outcome-oriented and regularly monitored.

Social Role Valorization

Social Role Valorization, or SRV for short, is a dynamic set of ideas useful for making positive change in the lives of people disadvantaged because of their status in society. SRV is utilized mainly in service to children and adults with disabiltiies.

Supporting Adults with I/DD in their Communities

Supporting Adults with Intellectual and Developmental Disabilities in their Communities: this publication covers values, goals, and quality indicators for integrated employment, pre-vocational services, and community-based non-work activities.

CLE Policy at LOQW

Provider Community Life Engagement Policy. This is LOQW's policy that defines CLE and lays out a procedure for enhancing engagement for individuals with disabilities. It should be used as a model for other providers.

Methods

The toolkit framework and content is based on findings from two research activities. These are 1) expert interviews and 2) case studies.

Expert Interviews

The CLE project team conducted a series of 45- to 90-minute semi-structured telephone interviews with experts in the field of Community Life Engagement. Experts were chosen based on their level of expertise and diversity of perspectives. The team interviewed a total of 13 experts. Two were self-advocates, 5 were family members of people with IDD, 4 were service provider executives, 2 were state agency executives, and 2 were researchers. Some participants represented more than one role (e.g. both a provider executive and a parent of an adult with IDD).

Topics covered included the goals of Community Life Engagement, evidence of effective implementation of Community Life Engagement, barriers encountered and strategies used, and the role of Community Life Engagement as a support to other outcomes, including employment.

All interviews were recorded and transcribed, and the transcripts were then reviewed by the project team to identify common themes. From these expert interviews emerged the four Guideposts for Community Life Engagement.

Case Studies

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

Use the sidebar on the left to read an overview of each provider.

LOQW

Learning Opportunities/Quality Works (LOQW) provides service coordination, skills training, and employment services in Northeast Missouri. They serve over 600 customers annually and work in 14 counties.

Leveraging close community connections

LOQW works in very small and tight-knit communities. The smooth functioning of the organization can probably be attributed to the closeness of staff and that many staff have known each other, and many of the individuals they serve, their whole lives. LOQW makes excellent use of their community connections whether it’s finding a used bike or finding someone housing - someone there will know somebody in the community who has that resource to offer. As they said “It’s not magic. You just pick up the phone.” The community itself appears to have embraced LOQW, with many organizations invested in long-term reciprocal relationships with them such as the Monroe Senior Center and the Parks Department. These organizations rely on individuals for their help with day-to-day activities as much as LOQW relies on them for work and volunteer opportunities. This creates a natural, organic ripple effect as the more people with disabilities engage with the community, the more the community becomes aware of and supports their participation.

Organizational culture that emphasizes CLE competency

The culture of community inclusion that LOQW fosters extends to their hiring and training practices. Potential employees are expected to come on board with pre-existing community relationships that LOQW can add to their network of resources. Should the employee have no previous connections, there is an expectation that they will go out and create them. LOQW invests heavily in staff training and the staff that attend these trainings come back and disseminate what they learned to the rest of the staff. The staff at LOQW must wear many hats from employment consultant for employers to direct support professional, so it’s important that everyone share knowledge and resources. Staff are also encouraged to become specialists in one area should they have the knowledge, inclination, or opportunity (i.e. autism, housing, etc.)

Individualized supports and one-to-one staff ratios

Staff take a very individualized, one-on-one approach, discovering the interests of people they are supporting and addressing their unique needs. LOQW has a heavy emphasis on individual goal development and monitoring, making sure that staff are consistently evaluating whether services and activities further those goals. SETWORKS software keeps all staff accountable. In a place like LOQW where everyone has “boots on the ground”, having shared values and constant communication is a must to provide consistent, top-quality service.

Recently, LOQW has begun to implement a Life Course Tool framework that breaks down each individual’s day into paid supports and free time via color coding. The idea is to visually examine if there are ways to eliminate the paid support time in favor of natural supports. LOQW staff are currently working with their service coordinators on ways to increase natural supports and fade paid supports. Stakeholders at LOQW did share that sometimes fading becomes harder than expected due to the close relationships formed between individuals and their direct support professionals.

Unintended consequences

With the heavy emphasis on individualization of supports, respondents noted that they can sometimes experience limited opportunities to engage in community activities together (e,g, several individuals attending a local event like a parade together), even when requested and preferred by those individuals. A stakeholder noted the incongruity: “So I feel like I'm talking out of both sides of my mouth, "Don't do group things." (but) If I want to call four of my friends and go, what's the difference?” LOQW values both individualization and choice, and strives to reflect this in the way they support relationships and community connections. This could be an important area for guidance in the organization’s newly developed CLE policy.

201 North Locust Street

P.O. Box 254

Monroe City, MO 63456

P: 573-735-4282

F: 573-735-2580

KFI

Based in Millinocket, Maine with offices in Bangor and Portland, KFI has been providing employment services as well as community and home supports for people with disabilities since 1962.

Leveraging close community connections

KFI staff recognize the importance of leveraging close community connections in a way that complements the direct supports they provide. The staff at KFI know almost everyone in the town so it is easy to connect other community members to individuals supported by KFI. Their philosophy on community inclusion is, “it’s not buildings and places, it’s people.” The staff KFI hire need to be joiners who participate in their communities. KFI not only wants the individuals they serve to be present and active in the community, they need them to be, since the near 24/7 support they provide cannot be maintained by staff alone; establishing natural supports in the community is a must. Whether that’s grocery store staff helping an individual shop, an individual working on their own in a thrift store, or church members going over to an individual’s house to eat, KFI looks for every possible way to get the most out of their small community regardless that it lacks the established infrastructures a large city provides. For example, while interviewing one individual, a community member stopped at his volunteer location just to check and see if he needed a lift home. This individual pays the community member a small monthly stipend cover her gas for his occasional lifts around town.

Reversing the typical staff ratio

In contrast to most provider ratios, KFI have teams of several staff members supporting one person. Because of this unique system they are able to offer 1 to 1 support to many individuals at once via a rotating weekly schedule where a staff spends 1 to 5 hours with one individual and then goes on to support another, sometimes in the same day. Other individuals have staff live with them at their house in revolving, 56-hour shifts. This staff flexibility allows for variation in the individual’s schedule, discourages “programming”, and maintains KFI’s “person centered thinking” ideals. Support providers actually become experts on the individual they support and are seen as his/her staff. Individuals reportedly respond well to the rotating staff (perhaps because it more authentically represents how people spend their days, with a variety of people rather than just one). The added benefits are that each staff member brings their own interests to the individual for them to explore and it makes the training and fading of staff that much easier as the one new face is still surrounded by several familiar ones who know the individual’s routine inside and out. Furthermore, transportation barriers are addressed as support providers use their own cars and are reimbursed for the miles. This allows for flexibility to mold to people’s busy schedules.

Benchmarking and ensuring high quality

To facilitate the amount of flexibility allowed staff, KFI prioritizes staff training and encourages their feedback to make sure an individual’s goals are being met and that the individual is continually afforded full choice (including the occasional bad choice) in what activities they want to do. KFI has frequent staff meetings, pre-established quarterly goals, and required benchmark reports. Goals are intentional but with a certain amount of flexibility when it comes to carrying them out on a regular basis. It’s up to the direct support professionals to modify activities to meet individual goals and interests. KFI compares themselves to Cirque Du Solei in that while the feats the people are performing may seem very impressive, there’s a whole group of people behind the scenes who you never see helping make it all run smoothly. They encourage staff to stay anonymous and behind the scenes.

Values-based

KFI has a very clear, strong, philosophical approach in everything they do, including how their supports are designed and delivered. In fact, the values are in every aspect of the organizational culture from the hiring, to training, to individualized and highly flexible supports. For KFI, Community Life Engagement is all about building experiences for people and creating opportunities for individuals to be engaged in natural settings. Their services do not involve person centered planning so much, as person-centered thinking throughout all aspects of the organization.

The organization stresses the importance of having one’s own home because the home is the place where social connections occur because you invite people over and people host you. Finally, social role valorization and the perception of competence are traits KFI stresses for all people they serve.

1024 Central Street, Suite A

Millinocket, ME 04462

Phone: (207) 723-9466

Fax: (207) 723-5099

http://www.kfimaine.org/

Transcen

Transcen is a non-profit organization dedicated to improving educational and employment outcomes for people with disabilities. They have helped over 13,000 individuals achieve employment since 1986. They are headquartered in Rockville, MD, operate a satellite office in San Francisco, CA, and have affiliated staff based in Maryland, New Mexico, Virginia, and Wisconsin.

The San Francisco based WorkLink program is a transition and employment service that annually assists 60 job seekers with significant disabilities to achieve employment tailored to their needs and interests. Transcen has operated WorkLink since 1996.

Taking full advantage of their urban location

WorkLink’s office, which serves primarily as a meeting hub for individuals and staff to check-in before they head off to their activities, is located in the heart of San Francisco. It is accessible by multiple train and bus lines, even to those who live outside of the city. If the individual did not already come to WorkLink with working knowledge of San Francisco’s public transportation system, they are trained through WorkLink’s “Let’s Get Lost” program. This program encourages public transportation route mastery along with safe ways to ask for help when necessary. In addition, to ease traffic, the city has established public carpool lots by entrances to the Bay Bridge where drivers are encouraged to pick up and carpool with fellow travelers in exchange for reduced tolls. Some individuals who are served by WorkLink utilize this service and one person even made an individual volunteer connection through socializing with other passengers.

WorkLink is located near multiple volunteer organizations, including the community kitchen of Project Open Hand and a forest conservatory, Save the Redwoods. WorkLink’s location puts them near multiple centers of community activity from baseball games to community colleges. WorkLink uses these community resources as teaching environments for skill building. Service hours are focused on helping individuals become more involved in their communities through volunteering and classes so that the individuals understand what it means to participate and contribute to their communities and for others without IDD to be able to see these individuals as equal participants, not just recipients of services.

Using small groups to support shared interests and peer to peer connections

Due to funding limitations, the majority of WorkLink’s community life engagement supports are done in groups. But the staff believes that group models can encourage socialization and friendships among individuals in a natural way. Individuals at WorkLink see each other socially, after work, and a few even date and have romantic relationships. Opportunities for individuals at WorkLink often arise out of the interests of others. For instance, if an individual wants to learn how to knit, a staff member will seek out a community class or store that offers lessons and then post that opportunity at WorkLink’s office to see if others are interested in participating. These communal opportunities allow individuals to develop hobbies, work on job skills and their personal goals alongside friends and community members. Organizations like Project Open Hand work with 1400 volunteers a year from all over the region, so the regular volunteers from WorkLink are always working alongside new people in addition to the people they see every week. This provides a safe environment to practice communication and social interaction skills.

Peer to peer interaction is highly encouraged by WorkLink and valued by the individuals with whom they work. Staff may place more reserved individuals with outgoing peers to facilitate socialization. This interaction helps grow social skills and confidence and staff support can more easily fade. WorkLink even organizes nights out at a local bar where staff, individuals, and other patrons have gotten to know each other over the years. This familiarity and skill building also decreases the need for paid support should an individual want to go on a social outing with friends.

Braiding funds to support both employment and community life engagement

WorkLink has developed an Integrated Work Services model that combines day services along with supported employment services. While some individuals at WorkLink receive only supported employment services, others receive a hybrid of supported employment and day services. All individuals served by WorkLink have an employment goal as part of their individualized plan.

The day service at Worklink uses an hourly rate and DDS waiver funds to facilitate a person-centered process of job exploration and skill building. Once an employment goal is determined, or if the individual just wants work supports, WorkLink starts the placement process. They braid in employment services that work closely with community instructors to target employment settings where the individual would be most successful. Once placed, Worklink provide a job coach through supported employment services funded by VR. Day supports may be reduced as the individual begins working and then reduced further as individuals’ work hours increase. But for some individuals who require ongoing support, these day services function as a “wrap around” support to ensure an ongoing connection with their friends and community.

WorkLink staff see a direct link between community engagement activities and finding paid work. The individual can spend as much time needed to explore jobs and develop life skills (even earning a letter of recommendation from a volunteer site), and then can maintain opportunities for socializing and volunteering during non-work hours once a job is attained.

Work-focused values

WorkLink believes everyone should have a job and that those jobs should reflect the individual’s interests and build on their strengths. They see the community as the ideal environment to teach work and non-work skills. They use scatterplot graphs to track various goals towards community engagement and employment and also use the Positive Personal Profile assessment to better understand the individual’s dreams, challenges, and work preferences.

That value also extends to the staff they hire. WorkLink sees value in hiring individuals without prior experience in the disability field; these individuals are often open to trying new things, see the value in having high expectations, and are not entrenched in more traditional service models. They want staff who believe that people with IDD can have a life similar to theirs and will push the individual past their own expectations of what they can accomplish.

401 N. Washington Street, Suite 450

Rockville, MD 20850

(voice) 301-424-2002 (TTY) 301-217-0124

(fax) 301-251-3762

Additional Resources

Use the sidebar on the left to access a selection of additional resources.

Community Life Engagement Homepage

Visit ThinkWork’s Community Life Engagement homepage where you can access a plain language flyer, briefs, presentation materials, and other publications.

https://www.thinkwork.org/cle

Starfire Video

See how deep, lasting relationships can come from unlikely sources, and are best formed through shared passions and interests. (approx. 2 minutes)

MA CBDS Guide

This is a guide for Massachusetts Service Providers in developing and operating community-based day services in a way that will ensure a consistent high quality of services that fully supports and embraces Community Life Engagement, resulting in a richer and fuller life that maximizes community integration for individuals with intellectual and developmental disabilities.

St. John's Video

St. John's talked to a pair of employees with St. John’s Community Services who have spent the last 20 years of their careers supporting people in a sheltered workshop. They also talked to a trio of persons supported (one who spent more than 30 years in a workshop) who are now employed and volunteering in their communities. (approx. 4 minutes)

State Data Guide

This data guide is designed help you summarize Community Life Engagement data using two sources: the Institute for Community Inclusion’s (ICI) National Survey of Day and Employment Programs and data and the National Core Indicators (NCI). If your state has participated in these data collection efforts, data from both sources can be used to create a profile of Community Life Engagement supports and outcomes. Access the data guide here.

CLE-Toolkit-old

Toolkit

The toolkit includes six topical sections:

Funding Sources

Introduction

Introduction to CLE

Introduction

What is Community Life Engagement?

Why Is Community Life Engagement relevant now?

What are state IDD agencies saying about Community Life Engagement?

Data Sources, Definitions, and Measurement

Introduction

Data Source #1

Data Source #2

Data Source #3

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

Four Guideposts for CLE

Where this information came from

Expert interviews

Case studies

Why do we need these guideposts?

Four Guideposts for Community Life Engagement

Guidepost 1: Individualized supports for each person

Guidepost 2: Promote community membership and contribution

Guidepost 3: Use human and social capital to decrease dependence on paid supports

Guidepost 4: Ensure that supports are outcome-oriented and regularly monitored

Assessment Tools

State Agency Self-Assessment

Provider Self-Assessment

Guidepost 1: Individualize Supports

Guidepost 1 Overview

Guidepost 1 Overview

Introduction

Individualize supports for each person

Start with an understanding of personal preferences, goals, interests, and skills

Emphasize person-centered planning and discovery.

Consider creative staffing, intentional grouping, and generating supplemental funding

Creative staffing

Intentional Grouping

Generate Supplemental Funding

What’s next?

Guidepost 1 Promising Practices

Avenues Staffing

Background

Implementation

An individualized approach to service provision.

Hiring and staffing based on client relationships.

Expanding service choices by mentoring new provider agencies.

Impact

Suggestions for Replication

Ensure variety of client and staff schedules.

Invest in client-staff relationships

For more information

KFI Flexible Scheduling

Background

Implementation

Impact

Suggestions for Replication

For more information:

Guidepost 1 Additional Resources

Person-Centered Planning Tools

Guidepost 2: Promote community membership

Guidepost 2 Overview

Guidepost 2 Overview

Introduction

Promote community membership and contribution

Start with inclusive settings and activities

Ensure staff presence does not limit connections with other community members

Place value on not just presence but membership in the community.

Consider individual preferences.

Guidepost 2 Promising Practices

LOQW Using Networks

Background

Implementation

Impact

Suggestions for Replication

For more information

Guidepost 2 Additional Resources

Engaging Faith Communities

Asset-Based Community Development Institute