Tennessee’s journey toward supporting people to have meaningful lives in the community has taken many twists and turns. For more than two decades, the Tennessee Department of Intellectual and Developmental Disabilities (DIDD) has been engaged with people supported and their supporters to change its policies, implement quality management systems, develop reimbursement methods, and offer training initiatives to support people to be included in the community.
This journey began in the 1980’s and 90’s requiring philosophical and cultural shifts, along with an evaluation of community programs which used a checklist for Community Presence and Participation. These were the first conversations around people being included in the community. However, measuring criteria like participation, inclusion, and relationships was challenging. The Quality Assurance Checklist measured presence in the community, but did not measure the value to the person. Due to these challenges, building capacity within the provider network and state support systems through training became the primary focus.
As a result, DIDD had its first exposure to CQL’s Personal Outcome Measures®. The Department also contracted to utilize Essential Lifestyles Planning to support person-centered approaches in planning processes.
These efforts helped transform the planning process from being solely focused on what was important for the person to include what is important to the person. These were the first steps in supporting people to drive their own supports and services rather than professionals determining what would happen in their lives. However, these efforts were delayed for a period due to a change in focus, motivated by CMS and lawsuit requirements to assure people were supported to be healthy, safe, and free from harm.
The early 2000’s brought significant restructuring of quality assurance systems, streamlining of regulatory expectations, external satisfaction surveys, and changes in reimbursement structure for day services. Instead of encouraging providers to support people to be engaged in their community as early initiatives had done, changes incentivized providers to deliver services that were community-based, while also limiting the number of people who received these services in community settings. In 2005, when the “Blueprint for Improving Service Delivery Systems” was initiated, satisfaction surveys indicated that people were only satisfied with how they were supported to participate in the community 70.8% of the time. Through hard work and concentrated efforts, the Department saw an improvement of 9.5% in just one year. Now, survey data indicates that people are satisfied with when and where they participate in the community 97.6% of the time.
New Initiatives in Tennessee
Alongside the systemic changes, Tennessee began new initiatives around Person-Centered Thinking and Employment. These initiatives allowed the provider network to be an active part of the systemic shift to supporting people to explore their community in order to learn what participation means to them. Through these partnerships, many new initiatives were implemented including the Discovery Process Training, Person-Centered Organizations, and People Planning Together, a self-advocacy training program. From these initiatives, areas such as education, exposure, and discovery were determined to be essential to people accessing, participating, and interacting in the community.
Agencies can use DIDD’s training initiatives as a framework for replication, to improve internal capacity for professional development in the area of community-building:
Discovery Process Training
DIDD established this in-house training to help people discover their skills, interests, and abilities. There is a focus on inclusion in the community, developing a person’s potential for productivity, and enhancing independence. DIDD finds that it is helpful for attendees to know that good decisions are made with solid information, and that people must understand what they are choosing.
Person Centered Organizations (PCO)
This is a grant-funded project for person-centered systems change. Agencies commit 100% of senior managers to Person-Centered Thinking training and subsequent activities over the course of seven days, as well as designate front-line managers who will serve as Person-Centered Thinking coaches. Coaches strive to have a set of Person Centered Thinking skills and practices, while the leadership group looks at what is being learned as these new practices integrate into typical agency practices.
People Planning Together (PPT)
DIDD works with people receiving services to become greater self-advocates, and to support themselves and others in defining and expressing life goals and planning for a person-centered future. There are both individual and group activities that facilitate discussion around life goals and visions. The goal is to increase self-advocacy skills among people supported, which is integral to DIDD’s mission and vision.
In 2012, Tennessee focused on becoming a true Person-Centered System driven through CQL’s Person-Centered Excellence Accreditation process. At that time, the State reinitiated work around the Personal Outcome Measures® and implemented a Basic Assurances® monitoring system. DIDD also expanded its commitment to Person-Centered Thinking by having staff dedicated to Person-Centered Training and Facilitation in each region of the State. These additions have been instrumental in supporting person-centered supports. These changes supported the self-assessment and transition needs associated with compliance with the HCBS Final Settings Rule. The efforts around this transition have further expanded DIDD’s expectation that people have access, are integrated, and are supported to choose how they participate and interact in their community.
Community-Building For Billy
Prior to the use of Person-Centered tools in his life, Billy had a life that was undesirable for him and for the organization that supported him, Core Services. Billy’s Circle of Support was struggling with determining the best way to support Billy to overcome some barriers that kept him isolated from others. Behavioral supports were being considered until it was decided that the Person-Centered Facilitation Process should be implemented first. Although Billy does not use words to communicate, his receptive language skills are good, and during the first Person-Centered meeting in January 2016, it was apparent that Billy had a lot to say. It became obvious to Core Services that better staff matching was warranted.
These new staff members really began to observe and take note of Billy’s preferences. He loved going to McDonald’s and flirting with the ladies in the drive-thru when he got his morning coffee. This led to going inside and developing relationships with the employees of McDonald’s. After 5-6 months of developing these relationships, the employees created a job for Billy that did not previously exist.
Along with his new job, Billy now has a communication book with community activities he uses to express his choices, such as volunteering with Meals on Wheels, playing Bingo, and attending church. Billy is also learning about his rights through Core Services’ Rights Assessment and education process.
Through this, Billy has expressed that he wants a girlfriend and wants more friends. By using the Person-Centered tools and process, a metamorphosis has occurred for Billy, from being isolated and unemployed to a social butterfly with many social roles and relationships.
Comparing Tennessee Data To National Averages
By Carli Friedman, CQL Director of Research
Just like Billy, the majority of those receiving supports throughout Tennessee are expressing that outcomes connected to community are present in their lives. When looking at Personal Outcome Measures® data from CQL’s PORTAL Data System, based on the community efforts Tennessee has made, the indicators within the ‘My Community’ factor are occurring far more often in Tennessean’s lives, in comparison to others around the nation. The data collected from certified interviewers (those who have achieved CQL Certification) shows that 80.2% of people receiving supports in Tennessee are interacting with other members of the community, compared to just 52.7% across the rest of the nation. This trend in Tennessee continues for other outcomes involving community, where 79.9% of people use their environments (60.6% nationally), 63.8% of people live in integrated environments (31.7% nationally), and 61.5% of people participate in the life of the community (46.9% nationally).
Tied to the community-building and inclusion initiatives in Tennessee, supports for people are also more common in the State, compared to the other parts of the country. PORTAL data reveals that 80.6% of people receive supports to use their environments (61.4% nationally), 76% of people receive supports to interact with other members of the community (54.7% nationally), 63.7% of people receive supports to participate in the life of the community (55.4% nationally), and 60.8% of people receive supports to live in integrated environments (36.7% nationally).
A Lasting Commitment To Community Life
Lessons learned throughout the journey have impacted every aspect of how DIDD supports community inclusion, from its policies, to quality management systems, support plan development, and direct support training. While there are many lessons that can be learned from this journey, here is a Top 10 list that can help your agency improve outcomes involving community:
- Clear and understandable expectations are essential
- Training on rights, integration, and participation are needed to move to a person-centered system that supports community inclusion
- Planning systems must support self-advocacy
- Self-directed funding gives people control over what community means to them
- Good person-centered plans reflect what is important to and important for the person
- Facilitating creativity and autonomy of the person and supporters to direct community exploration yields higher results
- The value of natural supports can’t be underestimated
- Financial resources don’t have to be a barrier to community inclusion
- There is immeasurable value in partnering with local non-disability specific organizations to expand community resources and discovery
- Matching of people supported with staff that share interests and desires leads to more success
“DIDD’s vision is to support all people with intellectual and developmental disabilities to live fulfilling and rewarding lives,” says DIDD Commissioner Debra Payne. “This means ensuring all aspects of our service-delivery system focus on ensuring people are able to live the lives they envision for themselves.” It is necessary that all pieces of the system support people to explore, expand, and choose how they live their community life.