Cammie McGovern knows firsthand the challenges and worries in facing a future for a child becoming an adult with autism and intellectual disability. Her recently-published book, Hard Landings, expands on her experience raising her son Ethan and the vast research required for her #1 New York Times op-ed piece, “Looking Into the Future for a Child with Autism,” published in 2017.
The Autism Housing Network is honored to be featured prominently in this book, which explores the question, “What happens to autistic children when they become adults?” This is the same burning question that ultimately prompted the creation of the Madison House Autism Foundation, of which AHN is a project.
McGovern spoke with Desiree at length about the difficulties in finding answers to this question in her book. “Desiree Kameka, project leader of the Autism Housing Network, gets a little emotional when she speaks on this subject. ‘I can’t tell you how many times I’ve had siblings call me up, frantic and scared, because a parent has just died or gone into a nursing home and they don’t know what to do with their autistic brother. I start by asking them what state they live in and what kind of waiver they’re on, and then they ask me, ‘What’s a waiver?’ The system is so complex that oftentimes the principal stakeholders don’t understand the main points they need.’”
McGovern brings this issue of adults aging out of the system and ‘dropping off the services cliff’ to the forefront. She encourages proactive measures to keep the momentum going. Things have already changed a lot since Ethan was a young child, and she is hopeful for more change in the future. In the book, Kameka tells her, “Everyone keeps saying we’re heading for a crisis but the truth is, we’re living in the crisis already.” One of Kameka’s biggest pet peeves is the barriers put up by state and federal governments when a parent group proposes alternatives. Kameka says, “There should be more incentives for families to develop solutions so we can put a drop in the bucket of the demand that is only going to grow over the next decade.”
Our goal at the AHN is to create a better future for individuals with autism and other intellectual/developmental disabilities and to help simplify the path to get there. We want to empower families to ensure the best future for their loved one. In addition to advocacy, education, and providing resources, the Autism Housing Network offers consultations to families seeking the best housing options for their loved one or project planning.
Hard Landings is filled with the struggles and challenges McGovern and her son face, but also with inspiration and hope for the future. We highly recommend taking the time to read it.