By Dwayne Webb
Never impose on others what you would not choose for yourself. –Confucius
Change is a powerful tool that each of us possess. We have the power to change how we approach every aspect of our lives. However, too many times we allow that same power to hold us back and to be a barrier to our goals simply because it pushes us outside of our comfort zone. Our comfort zone makes us feel safe, but it prevents us from growing or experiencing anything new, thus limiting our abilities and leaving us to wonder what might have been.
Across Tennessee and the nation, there are changes taking place in how services for individuals with intellectual and developmental disabilities are delivered by provider agencies. In Tennessee, we have seen a shift toward managed care services with the July 1 rollout of the Employment and Community First CHOICES waiver program. Additional catalysts for change in the states’ service systems can be seen in the final regulations of the Home- and Community-Based Services (HCBS) Waiver and our own Statewide Transition Plan. The new HCBS settings rule will require providers to ensure that individuals with disabilities have the opportunity to seek employment and work in competitive settings. Providers will also have to ensure that individuals have full access to their communities and are able to be engaged in community life with other non-disabled individuals.
The Centers for Medicare and Medicaid Services (CMS) initiated the settings rule changes in 2014, allowing providers time to implement strategies to come into compliance with the new regulations. In order for providers to continue to receive federal funding, they have until March 17, 2019, to have their HCBS programs comply with the new rules. How providers choose to handle these changes will have a dramatic impact on the lives of individuals with intellectual and developmental disabilities. The reason I say this is that for the past four years I have had a front-row seat to the transformation process at my organization and have gained a unique perspective on how changes can affect the mindsets of all involved.
On July 1, 2012, St. John’s Community Services assumed operations from a provider agency that I worked for that had been in business for 41 years. The primary cause of the agency’s closure was that the service models used — a sheltered workshop and other traditional facility-based programs — were not covering the cost of operations any longer. This, coupled with rate cuts in state funding and some unexpected expenses, took a toll on the agency’s rainy day fund. We struggled to find viable options and made cuts wherever possible, but the result was we were just too far gone to dig ourselves out of the financial hole. So with that, our agency reached out to the Tennessee Department of Intellectual and Developmental Disabilities to inform the department that we could no longer sustain operations.
Our company went up on the auction block, and numerous providers looked at assuming our operations, but it was St. John’s that stepped up. Now you can imagine the apprehension felt throughout our company, regarding someone new assuming the reins from our longstanding organization, which had always been known to provide quality care and services to the individuals and families we served. That concern was heightened even more when it was discovered that everything we had ever known regarding service delivery models was about to change, because St. John’s did not believe in operating any facility-based services.
SJCS believes in operating 100% in the community and providing real world settings for people to learn and grow. Many years ago, they decided as an agency that separating people from their communities would not help them prepare for a full and meaningful adult life. So they sold off all of their buildings so that all services would be provided in community settings. Staff in the community participation and employment programs would meet individuals at set locations in the community and carry out full schedules of daily activities. From that moment on, individuals never went back to a facility to be segregated from society again.
If you think about that, it is a very simple principle. We all have learned from our peers and our environment as we have grown. In addition, most, if not all of us, learn better from doing a task in a real world setting rather than through a simulated one like a classroom. The most important concept is that people have a right to be in their community, and our role, as a provider agency, is simply to support them.
SJCS realized they would rather spend the resources they had individualizing services for people, which often means investments in more staff rather than in facilities. Sometimes when you have buildings and a mortgage to pay, it can force you to make decisions based on maintaining those buildings rather than on what is best for the individuals being supported.
So, as you can see from the new company’s mindset, our little world was about to get flipped upside down, and a whole lot of change was heading our way. But that was OK, because as I said, St. John’s had already been there and done that. So, our game plan for the transformation was simple — stick to the core values already established and push on. At St. John’s we believe that every individual should:
- Have a career, have dreams for the future and make meaningful contributions – we hope that everyone will choose paid employment as their first and preferred outcome. But, even if a person isn’t going to participate in formal work, everyone can have a career, even if it is one of volunteerism or other community contribution.
- Be included, respected, and valued – this means “being a part of things,” having your opinion matter and being treated respectfully.
- Have on-going information and experiences from which to make choices. We have a training module that we use with new hires that talks about choice. If all you have ever known is chocolate, strawberry and vanilla ice cream, and I take you to Baskin Robbins, the home of 31 wonderful flavors, I just blew your mind if you didn’t know all that was there to choose from.
- Have a wide array of relationships –through work and being involved in one’s community.
- Live and participate in the community of his or her choice, which is drastically impacted through the financial security gained through work.
So, with the core values outlined, St. John’s began changing the mindset of our staff and the culture of the organization to lay the foundation on which new services would be built. We began by having honest communications with our individuals, their families, independent support coordinator agencies, therapists, and community members in general, regarding why we were transitioning services away from facility-based structures and what those services in the community would look like for all involved. The new service models would be formatted with the following criteria.
- All activities would be conducted 100% in the community. No SJCS facilities separate people with disabilities from their communities.
- Staff would accompany individuals to pre-planned activities in the community to conduct skill training – no van therapy (riding around in the van to meet the necessary number of hours ‘out in the community’)!
- Staff-to-individual ratios would be no greater than 1:3
- Activities would be chosen by the individuals and reflective of their interests and choices
- Activities would be close to individuals’ home community – no more long commutes on vans
Not everyone was excited to hear about these changes. We experienced a lot of pushback. People had the mindset of “we have been getting along just fine for the past 41 years by doing things the old way. Why do we have to change?” Everyone had reasons why these new service models wouldn’t work, and we had to address each of them as we moved forward.
We had to ease the minds of the families, the individuals and our employees by answering one simple question: “How does this affect me?” The question itself may have been simple, but the answers were far more complex. We had to address each person’s concern on an individual basis, while maintaining the commitment that we were going to make this work, and we were not going to back away from our mission nor would we alter our core values. With candid communication and realignment of personnel into new roles, we began to see the cultural shift take root and grow toward the new service models.
Shortly after we began the conversion of the day habilitation center we started to see the individuals’ demeanor change as the new community-based program evolved. The individuals were forming connections with the community in relationships and social outlets. They had opportunities to explore different community resources, to build skills and develop a strong resume for future work options. They had a chance to contribute to their community and build their confidence, a sense of self-worth and shared responsibility with other community members.
The early selling point for me came after we had been out in the community for a few weeks. As I was standing in the doorway of an office speaking to one of our day team leaders, one of the individuals literally knocked me out of the way to share what she had experienced that day in the community. She was smiling from ear to ear and clapping. She said, “I had a good day today. What do I get to do tomorrow?” This same individual had been coming to our day program for years, and I had not once seen that much excitement on her face. We had found something that day that she enjoyed, and she wanted more of it. I had spent 16 years working in a facility-based environment, segregating myself from the possibilities that were awaiting the individuals we served. I realized at that moment it was time for a much needed change.
We continued to develop the programs and our outreach to the community. One of the biggest things we learned was how much of a demand there was for volunteers in our community and that we could make a huge impact and difference for others as well as change the perception of the community as it pertained to individuals with ID/DD. The community began to see people with disabilities as contributors, as we were increasing the pool of available people for non-profits who depend on volunteers. As a result, the community truly started to get to know the individuals, providing an opportunity to educate and increase acceptance of people with disabilities.
St. John’s also focused on what would be needed to close the sheltered workshop. At the start of the conversion process, 61 individuals were engaged in the workshop facility. The typical activities revolved around such things as in-house contract work, enclaves and mobile work crews. When contract work was not readily available, skills were taught in classroom-style activities.
We have been moving toward gainful employment opportunities for individuals as well as community supports to offer a meaningful day of activities outside of the sheltered workshop. We have achieved success in this area as a direct result of our commitment to the “employment first” philosophy. SJCS believes that individuals with disabilities should have the same standards, responsibilities and expectations as any other working-age adult. At SJCS, employability is expected and assumed. It is not something a person has to “earn” the right to do.
We encourage creativity and look for opportunities that match the interests, skills and abilities of the individuals we serve. We aim to create opportunities that will enable every individual to develop and use their talents and abilities. SJCS believes that every individual can be successful in gaining competitive employment and that the position should be designed for one person to hold.
We then began to break down the walls of the workshop and provide “real world settings” that were reflective of the interests and choices of the individuals. Through planned activities in the community to conduct skills training, it wasn’t very long before the individuals began to express what they wanted their services and their days to look like.
For many individuals, this meant competitive and customized employment. As career paths began to develop, the individuals went from piecework rates (a few dollars a week) to fully integrated employment opportunities. Their jobs are now in their communities, which has helped those communities to see individuals with disabilities as valued members of society.
What happens to those in-house contracts, mobile work crews and enclaves that providers too often feel are an insurmountable barrier to transforming services because of the revenue generated or the long-standing commitment to local companies? We took the perspective that if the individuals could meet production in the sheltered workshop, then they can do the same at those businesses and do it in a fully integrated and fully compensated manner.
We approached our vendors and explained why we were moving away from the sheltered workshop and piecework rates. Many of these companies had become solely dependent on the production from our services. We sat down with each business and proposed direct placement with skilled labor that already proven they could handle the job. We presented tax incentive opportunities and gave 60-days’ notice of ending our piecework rate services. Many of the businesses moved right in to direct placement without any hesitation. Surprisingly, others that we had always met rush orders for opted to seek services elsewhere. As the in-house contracts and work crews faded, our supported employment program grew to assist 50 individuals in being successfully employed in the community, earning real wages for real work.
These past four years have truly been an eye-opening experience to the possibilities that exist, when you remain committed to the mission of advancing community supports and opportunities for people living with IDD. The 103 individuals who have transitioned have thrived in the new system. We have worked with the Department of Intellectual and Developmental Disabilities to film several videos during our conversion process, and the most powerful statement that can be made for change comes directly from the individuals. Individuals who have spent 20 to 30 years in facility-based programs who are now able speak to the friendships they have formed in the community and to the opportunities they have been given to truly make informed choices regarding their services. Check out the conversion process video.
We completed our transition journey on July 1, 2016, when we shut the doors to our sheltered workshop facility and fully shifted our services to 100% integrated community and employment supports. One thing we learned along the way was that this transformation process was a marathon and not a sprint. You have to do your due diligence as an agency to ensure you have established a solid foundation upon which to build your services. Change is hard, but you don’t know what you can do until you try. “Allow individuals the dignity of risk” and who knows what we all may learn.
Dwayne Webb serves as the Program Director of Employment and Day Services for St. John’s Community Services-Tennessee and is the chair of the board for the Tennessee chapter of the Association of People Supporting Employment First. He also serves on the Employment First Task Force created by Gov. Bill Haslam. With 20 years of experience in the human services field, Dwayne has dedicated his life’s work to enhance the opportunities and further the development of people with disabilities.