With graduation ceremonies just ending, this milestone is typically a reason to celebrate. After all, most young people are heading off to college or to other programs or starting new jobs with hopes and dreams for the years ahead.
But for my son Robby and our family, it’s just the opposite.
Robby is one of 70,000 individuals in California diagnosed with autism –an alarming statistic from the California Department of Developmental Services (DDS).
The yellow school bus has been Robby’s lifeline to opportunity since the age of 4 – taking him to a world of caring teachers, academics, social interactions, job training and activities. But Rob celebrated his 22nd birthday this past spring. And for all special education students, that’s when public school access officially ends and their life becomes completely different. He was allowed to stay in school after his 18th birthday to learn job and life skills and to prepare him for the ‘real world.’ Rob thrived in this transition class.
But now there is no place for him to go.
I started our search for Robby’s next phase and essentially his life journey, more than a year ago. Feeling optimistic and confident about all he had learned while in school, I tried to enroll him in one of the most innovative programs for young adults with special needs. It was a special college program that ‘catered’ to individuals with autism and other developmental delays. Acceptance would mean a chance to live in a dorm, follow a routine, and learn life skills and more academics.
But due to the huge increase in individuals diagnosed with autism (1 in 68 nationwide - according to Autism Speaks), competition for these programs is now extremely fierce. Colleges can now be more selective in who they accept. And with higher functioning individuals applying, those with moderate disabilities and cognitive issues—like Robby—are often left behind.
But we did not give up. We tried two highly regarded local programs in the East Bay – only to find they both had two-year waiting lists.
And sadly, the only programs with actual ‘openings’ did not seem at all appropriate. Robby is capable of so much more than sitting all day watching television or doing puzzles. So now here we are…after 18 years in the public school system with structured days and opportunities, Robby, like thousands of other people with special needs, is being left behind.
I never really thought this would happen to us. In my mind, my son was going to be one of the success stories! After all, he had wonderful teachers and aides and loved everything associated with school. Robby was the honorary high school band drum major, worked in the cafeteria, student store and local gym and even volunteered at Camp Parks. He recently gave a speech before a large audience to honor his beloved teachers and he excelled at number of Special Olympics sports.
But our experience appears to be the norm. Post-high school programs for young adults with special needs are not readily available. Yet, DDS has documented that more than 93 percent of Californians diagnosed with Autism are under the age of 31. Think about what waiting lists will be like in a few years when more individuals come of age.
Thanks to the Individuals with Disabilities Education Act (IDEA), children with special needs are guaranteed a free and appropriate education up to the age of 22. IDEA also mandates students be trained for further education, employment and independent living. I believe that public school districts for the most part, do a good job of providing this. But what’s the point if there aren’t opportunities to use those skills? Why can’t there be a “life after high school” for all who want it? Why are we not focusing on creating opportunities for this age group – especially in light of the tidal wave of individuals now coming through the system?
A few years ago, I read a tragic story about a Bay Area mother who killed her 22-year old son with autism and then committed suicide. Neighbors and friends said she had struggled to find a program willing to take her nonverbal son, who had intense behaviors and the need for 1:1 supervision. Obviously this was a terrible and extreme reaction – but her frustration at finding a program was real. They don’t exist. And when you do find one, you’re faced with long waiting lists and stiff competition. I feel like I need a marketing campaign and dossier of why Robby deserves a chance to be accepted.
It is time for this to change. All stakeholders - parents, educators, legislators and community leaders need to start working together – and aggressively - to provide options. We need more work and day programs for young adults. We need housing opportunities and essentially more life choices. Programs should extend the premise found in IDEA to ensure life-long learning and social opportunities.
And we must act now – before those two year waiting lists become five years long.
I took a picture of Robby on the morning he boarded the yellow school bus for the last time. It was bittersweet for me. I am so grateful for all the aides and teachers who’ve encouraged Robby through out his school years to work hard and be his very best. Now, I just need to find a place where he can continue to do that.
Susan Houghton is the Board President for Sunflower Hill, a 501c3 nonprofit organization (www.sunflowerhill.org) working to change the paradigm of living options for individuals with special needs by creating a sustainable community similar to senior living. She lives in Livermore, California with her husband Larry and son Robby.
Susan Houghton (925) 321 5757