January 12, 2016
It’s a time of exciting change and momentum in Oregon for people with intellectual/developmental disabilities [I/DD] who want to work and earn a competitive wage! The Lane v. Brown settlement fairness hearing was held in Portland in December 2015, and FACT Oregon support specialist Karen McKenney gave a powerful testimony. Her 23-year-old son Sam’s journey to employment speaks to the harm of low expectations, the power of high expectations, and the importance of having a positive vision for the future.
Sam’s employment journey could have ended many times over the last few years. The barriers and obstacles were tenacious; indeed, the unemployment rate for adults with I/DD is staggering! The Lane v. Brown settlement aims to give people with I/DD real, meaningful opportunity to work in inclusive settings at or above minimum wage, reduce the number of adults in sheltered workshops earning subminimum wages, and support a path for transition-age youth with I/DD to leave school employed in community. Karen provided testimony in support of the settlement agreement, and she’s graciously agreed to share it with FACT.
Sam had a brain hemorrhage as an infant which resulted in some significant medical and developmental challenges, including a seizure disorder, behavioral challenges, intellectual disability, and a communication disorder. Communication is Sam’s biggest challenge because people perceive him as less capable than he truly is. Sam has verbal skills, but due to a processing disorder, he may not give responses for up to 5-10 seconds or not respond at all. But Sam is very smart, intuitive, and perceptive. He takes everything in, including the unspoken and subtle messages from others.
When Sam was in high school, his teachers did not believe he was employable. They had very low expectations, and I let those creep into my vision for Sam. It’s a hard thing to shake when for so long all our family heard were all the things Sam can’t do, won’t do, will never be able to do. Worst of all, Sam started to believe it, too. When we shared Sam’s dream of working in radio with a high school transition specialist, we got what I call the “dreams vs. reality” speech – i.e., we were not living in reality if we thought Sam could hold a job, much less in the radio field because of his communication challenge. This made us feel hopeless, and Sam became completely withdrawn, unresponsive, and disengaged from life.
After high school, Sam entered Vocational Rehabilitation [VR] in the hopes of finding a job. After a community-based assessment, we were told that Sam was probably unemployable. We persisted. The second job developer echoed the first. She spent one hour interviewing Sam about his interests, but there was never any action past that. Once more, after daring to get his hopes up, Sam lost belief in himself, and shut down again.
Sam’s third job developer helped Sam get a job at Walgreens for two hours a week, but it wasn’t a good fit. The employer had no faith in Sam’s abilities, even while Sam wanted to prove himself and take on more hours. He was denied that opportunity and was going to be let go so he resigned.
We spent another two years working with VR when Sam finally announced to his team that he didn’t believe he’d ever get a job – but we continued to push our vision for Sam’s future of being employed using Sam’s person-centered plan and holding tight to high expectations and our belief that he could succeed. Finally, we encountered an engaged VR team with a new job developer who were willing to join us in our vision for employment and believe in Sam’s person-centered plan.
This job developer held higher expectations for Sam and presumed competence. By working as team with us and letting Sam drive the planning, we pushed forward with his vision. This job developer had three interviews for Sam within one month, and Sam was hired after one of these interviews! Sam now works at Bridgeport Village for its maintenance company, and regularly uses heavy machinery like a trash compactor. He communicates with his coworkers using a 2-way radio and his employer reports that Sam is the “clearest communicator” on the radio!
Sam works 18 hours per week, and his employer has stated that Sam can work as many hours as he wants. He makes a competitive wage at $9.25/hour, and works with people who don’t experience disability. The natural support Sam gets from his co-workers and his supervisor are helping with his success. His employer reports that his view on hiring people with disabilities has completely changed, and has now hired several other individuals experiencing disability. Sam is opening doors for others! The employer states that Sam is the most dependable person there: always on time, never complains, is doing the hardest job, and has changed morale within the company.
At first, Sam relied on a job coach to learn the job tasks, the structure and routine, safety around the mall and trash compactor, and how to communicate by the radio. The job coach also helped instruct supervisors how to communicate with Sam. He received 1:1 support for six weeks, and has since moved to long-term supports. The job coach just checks in twice a week; otherwise, Sam is on his own. He is holding onto his vision for working in music and radio, but wants to build his résumé first and get more work experience.
Since we engaged a team that rallied around Sam and our family’s vision, the difference is Sam is significant. There is a spark in his eyes that hasn’t been there in so long, a look of satisfaction and confidence on his face. He feels respected and, most importantly, like he belongs. He’s no longer isolated or alone. I’ve heard one of my favorite speakers, David Pitonyak, say that “loneliness is the only real disability.” I believe that is true. He is communicating more, and we are constantly receiving feedback from family and friends when they see Sam. Sam has a social life since moving in with a roommate. Sam is experiencing a whole life, and he is thriving.
I could not be more proud of my son. We always knew Sam was capable – and yet we had those dreams dashed for so many years. Am I scared at times? Yes, I am. But we are trusting in the supports we put in place and we are allowing Sam the dignity of risk, allowing him to live an independent, whole life.
If we hadn’t tried a third time with VR, we would have a young man sitting on the couch watching TV all day, completely shut down and withdrawn, with no confidence or belief in himself, his dreams of a whole life diminished. I am so thankful we never gave up on our vision and found people who believed in it too.