KFI was chosen to write an article for an upcoming edition of TASH Connections, an online magazine written for and by members of that national organization. TASH is an international organization and a leader in disability advocacy. Founded in 1975, TASH advocates for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. KFI’s CEO, Gail Fanjoy, is a member of the TASH Board of Directors.
Each issue of TASH Connections contains provocative articles on breakthroughs in the disability field and challenges readers to rethink some of the toughest issues affecting people with disabilities, their families and advocates. TASH Connections also features stories of success from model agency programs such as KFI. Enjoy the article which features our journey from segregated models of service for groups of people to inclusive community supports for individuals.
The Story Of KFI’s Agency Transformation
Founded over 50 years ago as a school for the area’s children with intellectual disabilities, KFI changed and expanded to become a regional provider of customized supports to people with disabilities, recognized and awarded for excellence. The transformation was startling and even revolutionary involving both a shift of attitude and service delivery.
In the early 80’s, KFI’s management staff asked two pivotal and fundamental questions: “Is there anyone anywhere doing anything better?” And, “Why can’t we do that?” It’s not that we were dissatisfied with our services; we were simply intellectually curious.
As a result, KFI joined national US organizations such as TASH, read the journal articles, attended conferences, reached out to the gurus of the day, and listened to our own hearts and minds. The conclusion that congregation and segregation of children and adults with disabilities was wrong came quickly. What to do about it took time.
In 1985, KFI closed its segregated school program. Recognizing the need for children with disabilities to interact and be educated with typical children, KFI worked with local schools to transition our remaining students into their neighborhood schools.
In 1987, due to the success of job placement and supported employment, KFI closed its sheltered workshop which was a stand-alone furniture refinishing business serving approximately a dozen people on a day-to-day basis. The vocational assessment service funded by Vocational Rehabilitation was moved to a local hospital in order to provide training and evaluation in a real work setting.
In 1989, all sub-contract work was abolished in favor of socially inclusive supported employment and KFI’s day program was transformed into a service that provided broad opportunities for community participation.
Charles was typical of the 28 or so people supported in KFI’s day program from the early 60’s through the 80’s. He lived with family members – a brother and sister-in law, he came to the day program five days a week where he worked for subminimum wages cutting clothing into rags, he didn’t have much in the way of responsibilities or authority in his home, he was virtually unknown to all but his family and fellow day program participants, and he was happy in life. His family did not want Charles to work competitively and they asserted that he would live with them until the end of his life.
Charles developed other ideas. He saw some of his friends from the day program getting jobs in the community, and some of them were moving into their own apartments. Charles longed for independence and autonomy. Staff from KFI championed Charles’ cause for a number of years, and in 1992, Charles got his wish.
KFI took the state grant dollars we received to segregate Charles in the day program and repurposed them to pay for staff that would support Charles to live in his own apartment. This was before the advent of Medicaid Waiver dollars, and even though there wasn’t much money, we had maximum flexibility to do what we wanted with it. Consequently, Charles received paid supports of just 24 hours/week, but his community friends and neighbors were what made his life enjoyable and provided a safety net.
Charles’ relationships and community memberships increased with opportunities to meet and interact with community members not involved in disability services around different areas of interest – church, exercise, ceramics, volunteering, wrestling, coffee, snowmobiling, Native American culture, coupon collecting, harmonica playing, just to name a few. This was the same person who was happy cutting clothing into rags in the segregated day program! He turned out to be a beloved community member, a great teacher, a man of faith and a cherished family member.
Charles passed away peacefully in the fall of 2006 at his home, in the environment that was most familiar and comfortable to him as the Lord’s Prayer was being recited to him by loved ones at his side. His obituary paid homage to all that Charles had taught us and accomplished. “Charles’ move into his own apartment, his community connections, particularly through church, his kind and sincere personality, and his deep spirituality affected everyone he met. He was the personable host to political figures and commissioners who were always impressed with his home, his graciousness and his community activities. His story, which was told to countless people throughout the country, inspired and challenged many and created changes that improved the lives of many individuals with disabilities. He was a great example of the power of community and the ability of individuals to achieve much when given the chance.”
Many others followed in Charles’ footsteps and KFI effectively ended all center-based services in 1996. Over approximately a dozen years, KFI ended its segregated school program; closed its sheltered workshop; transformed its day program into one that, while still facility-based until 1996, gave people broad opportunities to connect to the community, work, and enjoy supports in their homes; integrated its preschool program with typical kids (now closed); shut down its thrift store; closed a 4 bed group home and an “apartment program”; scrapped its vans; and abandoned the building that housed the segregated school and day programs built by the founders of KFI. We had a vision that people with disabilities could live in homes of their own in typical neighborhoods, could work in community businesses, and could enjoy the friendship and connection with typical community members. They could lead “regular lives”. Every decision was weighed against that vision.
We were not afraid to make things messy. Some organizational transitions require complex changes to staffing, supervisory structures, timelines, etc. This never became a reason not to continue. We never assumed there was a “model” that would serve all situations. Everything was individually constructed. KFI made decisions based upon unique situations and had no universal approach. We learned from our mistakes and never let past experiences hinder trying the same thing again.
From our early influencers such as Syracuse University professor Wolf Wolfensberger, who enlightened us about the principle of normalization (later updated to become social role valorization theory), especially devaluation and its devastating consequences, to Lou Brown who showed us that everyone is ready for community employment – human service agencies needn’t continue to be people’s employer, to John and Connie Lyle O’Brien whose contributions to our thinking and actions remain alive and well today as we plan in person-centered ways around how people can grow in relationships, increase their community presence, gain more choice and control in their life, increase the number of valued ways they can contribute to community life, and experience respect. KFI set about changing lives one person at a time.
KFI created a culture supportive of risk – supporting Charles, a man with a significant intellectual disability who did not read, write, or tell time with just 24 hours/week of support is a great example of how bold we were. We tried to hold true to “no double standards”, the question being – if it was my life, what would I want? We focused on supporting people to achieve and maintain valued social roles, community employment, real homes, and meaningful community membership. Of course, we did this “one person at a time”.
Core values that guided KFI’s organizational change:
- Staff changed their thinking, realizing they needed to support people in ways that made sense for them, instead of fitting them into existing programs or service models. We emphasized the importance of dealing with a person’s whole life.
- We acknowledged the connection between vocational and non-vocational supports for people. Staff understood that where people live determines work-related opportunities or limitations.
- Staff were passionate about getting community jobs for people they supported, even though they had no idea initially how to eventually accomplish this goal for each person.
- Staff set the expectation that people could work and would find jobs, that they could live in their own homes, and that they could belong to communities.
- KFI viewed the individual with a disability to be the primary customer. While families were extremely important, as well as funders, KFI kept its focus on the person and advocated with them and sometimes for them.
- We knew that people with disabilities should have the opportunity to decide the type of lifestyle and services they want, and people asked for things that we all have and take for granted. Home, work, relationships, health…etc.
Useful strategies and considerations (In regards to staff):
- Staff took special pride in sharing new information, setting aside time to talk about the exciting things they had discovered.
- Whenever an employee left, KFI revised the job description to be more community-based emphasizing a “connecting role” for direct service staff. This was used as an opportunity to help move the organization forward.
- At supervisory meetings, staff discussed three successes and one lost opportunity as a way to focus on accomplishments.
- KFI invested in values-based training for staff, and more importantly, held themselves up to the principles of social role valorization.
- KFI hired people for their values, rather than their experience, certifications, or degrees; they hired people from the same community as the people they supported; staff needed to be able to describe how they were connected to their communities; staff had to demonstrate that they were knowledgeable about their community and its resources.
Useful strategies and considerations (In regards to services):
- When staff started delivering services differently (personalized, community-based), they asked for help from staff who were more experienced. While services were being individualized staff were expected to communicate and collaborate with one another about an individual’s support needs.
- KFI stopped providing vans and staff began using their own vehicles, people took cabs (northern Maine’s answer to public transportation), or used other non-group arrangements including rides from community members.
- KFI used ordinary community venues, not just for jobs, but for all aspects of a person’s life (e.g., health clubs, adult education, volunteer opportunities).
- The agency remained mindful of the age-appropriateness of the activity, both in terms of the activity itself, but also in terms of time of day in which non-disabled persons of similar age would routinely engage in the same activity (i.e. adult evening swim time at the public pool versus kiddie swim time in the mornings), and always considered the dignity of the person supported.
- The agency gave staff permission to use their personal connections on behalf of the people they were supporting.
- KFI paid better for the results it was seeking. During the years when KFI had “a foot in both worlds” staff that worked in personalized community connector roles made more money per hour than staff that supervised groups of people doing sub-contract work. Even today, the hourly rate paid to direct support staff that assist people to pursue and achieve competitive or self-employment is higher than the rate paid to support someone to have a leisure life.
KFI continues to offer citizens with intellectual and developmental disabilities a full range of supports including job development, supported and customized employment, community life engagement, and supported living. Today, we have offices in both northern and southern Maine. Our employment services continue to meet with great success and include jobs for people with more complex disabilities. And for people who once would have faced a bleak future in an institution, foster or group home, they are moving into homes of their own – including home ownership.
The founders of KFI had the vision and knowledge that people with disabilities were also people with abilities. Their dreams for their own sons, daughters, and fellow citizens helped shape the lives of those served by KFI today.
Services to people with disabilities have undergone many changes also. From the early days of segregated schools and adult programs that sheltered and protected to the current philosophy that calls for community participation and inclusion, KFI has kept pace with and often led the way with innovative services for people with disabilities in Maine.