If this were just a case of diminished expectations, I probably wouldn’t be writing about those terms. However, those words that influence diminished expectations have resulted in a regulatory environment that doesn’t support reaching for goals and dreams for people with I/DD. At least in Colorado, services for people with I/DD are designed and regulated in ways that recall “The Boy in the Bubble.” If you aren’t familiar with that term, the Boy in Bubble was a prominent sufferer of severe combined immunodeficiency (SCID), a hereditary disease which dramatically weakens the immune system. The name was a reference to the complex containment system, which resembled a plastic bubble, used as part of the management of his SCID. It also inspired a Paul Simon song.
Our State’s system and the rules and regulations surrounding them makes it very difficult to deliver services with an aim of exploring one’s potential. Instead, they tend to be focused on health and safety. Of course we want people with I/DD to be healthy and safe. But that’s not all they want. That’s not all that any of us wants.