We can't let the light go out for 1 in 68, once they turn 21.

We can’t let the light go out for 1 in 68, once they turn 21.

A response to NBC’s Dateline Special, On the Brink.

“When the school bus stops coming so do the services,” explained Shawne Zakaria, executive director of Eva’s Heroes (a nonprofit organization founded by Eva Longoria to enrich the lives  of teens and adults in San Antonio, Texas with intellectual disabilities). The first time I heard those words they lingered for just a moment having minimal impact.

My daughter had only been diagnosed with autism a few months earlier. The local school district and I had just become acquainted; read: I had only gone one round advocating for the  services my daughter so desperately needed. I was just learning the rules to “not our responsibility” a fierce competition where the school district, government agencies and insurance company see who can offer the least amount of services while pointing a finger and suggesting one of the others should be providing the services. I didn’t realize that once I got one or all three on the ropes that they would just point the finger at me and say “okay, it looks like you are right – none of us: the school district, insurance company or government are going to provide services to your child – your family needs to step up and shoulder the $100,000/ a year burden. Did we mention the importance of early intervention?” I didn’t know that. But now I do. I have gone countless rounds fighting on behalf of my daughter, I also began working with Milestones Autism Resources (Milestones), a nonprofit providing autism resources in Northeast Ohio. Collectively, my personal and professional experiences made those words that were once fleeting, to now be the cause of great alarm and consequently a rallying cry; “When the school bus stops coming so do the services.”

Tonight as I watched, “On the Brink” an NBC Dateline Special that showed the emotional and personal side of autism’s “aging out” crisis, a weighted fear blanketed my body.  I weeped for Lenore and Mary, the mothers who shared the story of their sons’ transition to adulthood.  I have only been a special needs parent for a little more than four years and I am exhausted and anxiety-ridden. I can only imagine how Mary and Lenore feel after fighting for so hard for so long and then to come not to a finish line but to be forced off a rock cliff into a sea of nothingness.

When the school bus and the services stop coming parents are forced to question whether or not the countless hours of therapy and the hundreds of thousands of dollars said therapy cost were wasted. Without opportunities to interact and engage, people with autism will slip back into their own private world and lose previously acquired skills – like the ability to communicate verbally. It is like watching a light go out one that was very difficult to turn on, mind you.

FACT: Mothers of children with autism frequently suffer from Post Traumatic Stress at levels similar to those of a soldier who has been in extended combat. -University of Wisconsin-Madison.

When I look at my daughter, Caroline, I want the same thing for her that I want for my other daughter – a chance meet her unique potential and to contribute her talents and efforts to her community.  I believe that everyone: individuals with special needs and their families, employers, government and local communities all benefit when everyone is offered an opportunity to fully participate and contribute to our society.  However, the gaping black hole that fails to create and implement realistic transition plans that allow individuals with autism to reach their unique potential and access the services necessary to do so gives me great pause not only for Caroline and the other, 1 in 68, but for society as a whole.

FACT: Autism services cost U.S. citizens $236 – 262 annually. A majority of the costs are in adult services $175 -196 billion, compared to $61 – 66 billion for children.

One of the reasons, I am passionate about my involvement with Milestones is because of the Roadmap to Adulthood Project an innovative program that supports families and providers to create and fully implement a successful transition plan.  Transition planning creates a path for the intended outcomes for a student’s adult life post-high school. Whether the student is college-bound or is going straight into employment following graduation, comprehensive planning will help the IEP (Individualized Education Plan) team, family and student reach these future goals.

Milestones has a multi-pronged approach to transition planning providing support and training to individuals with autism and their families as well as to providers (schools, agencies or other nonprofits).  Additionally, Milestones developed an inspired internship program for high school students with ASD.  As part of this program, Milestones recruited employers to offer internships in Northeast Ohio to students with autism. Then Milestones worked with the student, employer and school to ensure the student was learning how to effectively contribute in a professional environment and that the employer had the tools and knowledge to manage an intern with ASD.

FACT: 35% of young adults (ages19-23) with autism have not had a job or received postgraduate education after leaving high school (this does not include the large percentage of persons with autism who are underemployed). And according NBC Dateline’s On the Brink, 80% of individuals with autism under the age of 30 live with their parents.

The limited number of opportunities or programs for adults with autism force even undesirable programs to be considered. Day Habilitation programs that seem to simply put individuals with autism “in storage” may be more desirable than no program at all because at least the habilitation program provides a reason to get out of the house.

July 26, 2015 marks the 25th anniversary of the signing of the Americans with Disabilities Act (ADA). In that time, America has  made the environment more accessible but now we need focus on making communities more inclusive. In other words, you can build a ramp to provide access but it takes people to create opportunities.  Giving individuals with autism a chance to contribute to our society is essential as Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation (a non-profit organization devoted to studying the issues facing adults with autism) explained “there is a tsunami of children who are aging to adult life.”  To quantify that tsunami, an estimated 500,000 children with autism will age out over the next 10 years. Much like Social Security it is time to recognize and address this crisis before the repercussions are too great.

FACT: In June 2014, only 19.3 percent of people with disabilities in the U.S. were participating in the labor force – working or seeking work. Of those, 12.9 percent were unemployed, meaning only 16.8 percent of the population with disabilities was employed. (By contrast, 69.3 percent of people without disabilities were in the labor force, and 65 percent of the population without disabilities was employed.) And according to “On the Brink” individuals with autism experience higher unemployment rates than people with other types of disabilities.

When one of the mothers from “On the Brink” was asked, “how much does it cost do raise a child with autism?” she simply replied, “everything you got.”  And to be clear from personal experience I assure you she is not speaking only in terms of money – it is also time, energy, mental health and in many cases the career of at least one parent.  Sibling of kids on the spectrum, grow-up knowing that when their parents pass away they will inherit responsibility for their sibling. Most would not want it any other way but this is a tremendous responsibility. Families impacted by autism pour their heart, soul and everything else they have into giving their loved one with autism the best chance possible. It is simply cruel for these families to work so hard, sacrifice so much to then get to adulthood to find those efforts were for naught.  Organizations like Milestones are working to ensure more families have the support they need for a successful transition to adulthood but Milestones can only do so much. The antiquated funding structure that allows services and supports for individuals with ASD to stop on the 21st birthday must be modernized to meet the needs of today’s world.

“On the Brink” shined a light on this crisis now we need to keep the conversation going and demand action.  What are you going to do to raise awareness about the “aging out crisis”?