By Guest Blogger Tracey Fecher, Vice President of Programs for Community Gatepath, Disability Blog, April 15, 2015
Throughout the next decade, more than half a million young people with Autism Spectrum Disorder (ASD) in America will be “aging-out” of the education system when they turn 21 or 22. Those statistics are alarming. Families will face overwhelming changes when the systems that have been in place to support both child and family disappear once school services end. The premiere of NBC Dateline’s investigative report, “On the Brink,” earlier this week created a great buzz in the autism community across the nation, effectively shining a spotlight on this crisis. Camera crews documented the emotional journey of two families, during the course of a few years, who navigated this important transition in their child’s life.
ASD is the fastest growing developmental disability nationally. According to the Centers for Disease Control and Prevention (CDC), the number of people diagnosed with ASD is increasing rapidly and expected in some states to double during the next decade. Federal and state governments must respond to the growing demand for adequate support systems and services for adults so individuals with intellectual and developmental disabilities can thrive and aren’t left floundering when they no longer have the education system that has supported them since they were preschoolers.
Young people with autism and their families need tools to help them prepare for the transition into adulthood. The mother of one of the young men highlighted in “On the Brink” described this life-phase as equivalent to sadly being “pushed off a cliff.”
To ensure those families prepare themselves for this critical life-change, AbilityPath, in partnership with Special Olympics and Best Buddies, published “The Journey to Life After High School: A Road Map for Parents of Children with Special Needs” – a comprehensive resource guide and report that can be used as a tool to chart a child’s transition into adulthood. It gives an overview of what lies ahead and a detailed list of resources for where to go for support.
“Life After High School” guides families along the journey that they and their children will take after high school. Parents of children with special needs learn to assertively navigate a social, legal and educational maze to secure the services they and their children need. But what goes on during childhood pales in comparison to the years that follow. All too often, families discover that there is little coordination – and a lot of fragmentation – among agencies and services for those with special needs who are over the age of 18 or 22. Too many communities lack quality services and programs available for young adults with special needs.
Families are often faced with difficult decisions and limited knowledge of available resources. Building the new support structure for their adult child requires sorting through a maze of options while also learning about a variety of new laws, systems, benefits and requirements. At the same time, young adults with special needs are grappling with the physical and emotional changes brought about by adolescence just like their typically-developing counterparts. Their feelings about the future may be complex or even contradictory. Parents too may feel overwhelmed and not sure how to help their child move into the wider world.
Not every teenager with special needs will go on to a four-year college. Some will choose community college. Some will get vocational training. Some will work. Some will go into day programs. Some will stay home. In any case, the transition brings profound physical, emotional, social and legal changes.
Young adults with special needs and disabilities should have the same opportunities as their peers for a productive life after high school. They want the same things as their peers – to learn, make friends, discover what they are good at, find meaningful work and achieve independence. However, only one out of five people with a disability are working today. There are agencies throughout the United States, like the Silicon Valley-based agency Community Gatepath, that are actively working with businesses to develop employment opportunities for people with developmental disabilities.
“Life After High School” is intended to be a guide for families to help them find the right pathway for their child through the legal, social and regulatory changes that come with the transition to adulthood. It is filled with practical information and advice from other families. It clearly explains the laws and services that protect someone with special needs, creates a guideline for the individualized education program, and lays out the various paths an individual can take after high school. The report culminates in the first-ever national directory of state agencies that help families everywhere find the support services they need.
Dateline’s “On the Brink,” which followed two families through this important transitional phase, was a realistic and alarming glimpse into what lies ahead for the millions of young people with developmental disabilities. It’s important for families approaching this critical stage in life to know that there are tools available to help them navigate the journey ahead so they can be better prepared for the change.
“Life After High School” is the third in a series of original reports published by AbilityPath.org, an online forum of Community Gatepath dedicated to serving the families of individuals with special needs and disabilities. It is available for FREE download at www.abilitypath.org.
Tracey Carrillo Fecher has a unique background that brings together children’s services, employment programs and project management. Tracey joined Community Gatepath in 2010 and currently holds the Vice President of Programs position, where she oversees all of the organization’s programs that serve individuals from birth through retirement. Most recently, she served as the Administrative Director of Children’s services. Tracey has dedicated the last 15 years of her career to working in the non-profit space with an emphasis on developing programs for children, youth organizations and families. During this time, she demonstrated significant expertise in leading complex projects which included a variety of stakeholders with diverse needs. Before to her non-profit focus, Tracey spent 10 years working for an industry leading computer company utilizing her consultative and sales experience to collaborate and find solutions to her customers’ technical needs.
For more than 90 years, Community Gatepath has been “Turning Disabilities Into Possibilities.” As one of the premier nonprofits in Silicon Valley, we provide inclusive programs for people with special needs at all stages and ages. These programs enable Gatepath to create opportunities of greater independence for children, youth and adults with special needs and disabilities, empowering both individuals and families through diverse, individualized education and support services. Our dedicated staff encourage physical, developmental and social well-being at all levels, including early intervention and therapy for children, inclusive preschools, support services for families, social communication programs for youth, vocational training for adults and employment placement. An online resource center is available at AbilityPath.org and peer-to-peer programs allow parents to share expertise and insights.