Originally published in 2017 as Engage Brief #7.

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.”

The third provider is guided by the concept of Social Role Valorization. As an administrator explained, “[our] mission, at its core, is to help people achieve and maintain socially valued roles. ... And it's going to sound silly, but we actually try and track it. I mean, we actually try and say who has achieved a valued role.”

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.

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.

Oliver Lyons

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.

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

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

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.

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.

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.

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.

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.

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