Families Facing the ‘Cliff’: The Challenges Faced by Young Adults with Disabilities Negotiating Transition from School to EmploymentJanuary 6, 2016
Stephanie Mackay, Director of Development, Columbus Community Center (www.columbusserves.org)
There are two statistics that keep me up at night and motivate me to get to work the next morning: As of November 2015, the labor force participation rate was 68.3% for adults without disabilities compared to 19.2% of adults with disabilities. The unemployment rate of individuals without disabilities is 4.5% compared to 12.1% for individuals with disabilities (www.dol.gov/odep/). These statistics are routinely tracked by the U.S. Department of Labor Office of Disability Employment Policy. If you have a disability, the statistics indicate you are less likely to be working than your peers who don’t have a disability. Throw a rock, and I guarantee it will land in the front yard of a family impacted by these statistics. The rock will likely land in your own yard or your neighbor’s yard. It is likely to land next to a dandelion.
It has been a personal and professional milestone to help organize the upcoming symposium “Autism in the Workforce: Identifying Obstacles and Leveraging Innovation” being held at the Federal Reserve Bank of Philadelphia on January 13, 2016, co-sponsored by Columbus and the Global Interdependence Center. (Registration information at www.interdependence.org) It has been an unlikely partnership—a Salt Lake nonprofit providing support services to individuals with intellectual and physical disabilities and a Philadelphia nonprofit encouraging global, cooperative discussions about issues related to economics, trade, and finance. The alliance gave us a new forum to discuss the broad economic impact of disabilities that is summarized in the abovementioned statistics tracked by the U.S. Department of Labor. Work is fundamental in our lives. It defines our identity and the contributions we make to our community. The statistics show us, however, that work is likely to be out of the reach for many individuals with disabilities over their lifetime. There are many layers and many discussions ahead of us.
The focus of the symposium is on the implications of the growing rate of autism spectrum disorder (ASD), which is bringing a new focus to the lifetime implications that individuals with intellectual disabilities and their families have faced for generations. Currently, 1 in 68 children in the U.S. is being diagnosed, and worldwide 1% of the population is estimated to have ASD. New Jersey and Utah have the highest rates of ASD in the country—2% of children are being diagnosed. Young adults with ASD are leaving public school facing an 80% unemployment rate, the highest of any disability demographic.
For many families, these grim statistics don’t come into full perspective until after a child completes public education. At that point, it quickly becomes apparent that the family is facing what many describe as the “cliff.” This is the place where families realize that employment is not the natural next step for a young adult who has completed school. If your child has a disability, the next step is stopping to realize that the cliff brings into view a landscape that the family is totally unprepared for, and it is a landscape that even social services professionals and academics have a hard time explaining and negotiating.
But first, some history about why the cliff exists today. Thanks to pioneering efforts of families and advocates in the 1950s and 1960s, children were finally fully welcomed into public education when in 1975 Congress enacted the Education for All Handicapped Children Act (Public Law 94-142). This law gave families an equal playing field and resources for their children’s education. This has special meaning in Utah, where parents and advocates influenced groundbreaking policy and legislation at the local and state level beginning in the early 50s, eventually providing some of the groundwork for Public Law 94-142. I have had the honor of getting to know some of our founding parents who are now in their 90s with children who are in their late 60s. Their grassroots advocacy paved the way for subsequent generations of children with disabilities to go to public school. Forty years after Public Law 94-142 was enacted, we have had approximately three generations of children completing the full cycle of elementary and secondary education with their peers. However, we also have three generations—and many more to come—facing a life without post-secondary employment opportunities. We changed education, but no one was really ready for the transition from childhood to adulthood, from school to work.
A few weeks ago, I hosted a contingent of law enforcement officers at Columbus so they could become more familiar with some of the daily obstacles individuals with disabilities face negotiating access to the community. Of twelve officers, four of them took me aside and told me they were parents of children with disabilities. Three of those four children had ASD. These are professionals that are integral to the safety of our community—they have the authority of a badge and the law behind them. Four fathers reached out to me, anxious to find out more about the services that might be available for their children. Their peers clearly stood beside them with empathy and support. Because of their profession, I could assume a level of professional training that allows them to negotiate dangerous and difficult situations in our community. I also saw in their eyes the first glimmer of the cliff. They were sensing the danger and difficulty of the cliff, but they knew there was no training that could prepare them for it.
At the January 13 event, I will spend some time trying to bring the “cliff” into perspective for the audience. I will also get to join Thorkil Sonne, the founder of Specialisterne (www.specialisterne.com), a nonprofit that works towards the goal of creating job opportunities through social entrepreneurship, corporate partnerships, and innovative employment models for individuals with Autism Spectrum Disorder (ASD). Thorkil is internationally recognized as a social entrepreneur, but, more importantly, he is the father of Lars, who was diagnosed as a child with ASD. I encourage you to read a recent MIT Sloan Management Review article about his work entitled “The Dandelion Principle: Redesigning Work for the Innovation Economy” (http://sloanreview.mit.edu/article/the-dandelion-principle-redesigning-work-for-the-innovation-economy/). The dandelion metaphor is powerful—as children, we often see the positive attributes of a dandelion—it is medicinal, playful, edible. As adults, we see a weed that we are compelled to remove from the uniformity of the green yard. The Dandelion Principle argues for changing our perspective and workplace practices to let dandelions thrive.
As a father and an entrepreneur, Thorkil has given us the Dandelion Principle as a new way to look at disabilities in the workplace. Once you become familiar with his work, you will never look at dandelions or disabilities the same again. Columbus is partnering with Specialisterne to bring the Dandelion Principle to Utah. I hope I can circle back to the fathers I met last week and share Thorkil’s story. I hope someday I can point them toward a dandelion and away from a cliff.
Join GIC and the Columbus Community Center as we continue the discussion on The Bottom Line of Disabilities, January 13 in Philadelphia.