Certain birthdays are milestones in the progress to adulthood. Ages 16, 18 and 21 have special meaning to many. For families with severely disabled children, turning 22 is huge.
And it is a threshold many fear to cross.In Massachusetts, a person with autism or another special need "ages out" of the public school system at 22, and into the adult services system if they qualify.
With the number of autism cases climbing, Massachusetts — a state respected for its comprehensive response to different capabilities and learning styles during the school years — is unprepared to assist the many autistic adults expected to need help with housing, self-care and other basics for decades.
Parents facing the age-22 divide are finding to their alarm that money for services is absent or tight. Just when they might have been aiming for some degree of independence for their loved one through concerted, joint effort — they are more on their own than before.
Michael E. Moloney, CEO of Horace Mann Educational Associates in Franklin, said at a recent autism summit in Worcester that "the adult system, unequivocally, is not ready" for the tide of autistic children aging into adulthood.
It can take a decade or two for space in an appropriate group home to open up, parents and advocates say. Some parents who are legal guardians for their children end up serving as their housing and care provider for many years, which does not always meet the autistic adult's best interest in the present, let alone the future.Many parents of autistic people say, "I can't die."
But we all do.