They Created Us

I graduated high school in 1974.  The only student that came close to being identified as a student with a disability during my twelve years of education was a young girl named Teresa.  She was born with only two fingers on her right hand.  Teresa went to Catholic elementary school and high school with the rest of us.  Her only disability was that she was left-handed.  This was the extent of my experience with children with disabilities.

During the first PIP session, I learned that while I was preparing for high school graduation and was oblivious to the disability world, parents of children across the country were banging down the doors of their legislators demanding the passage of the first special education law.  I remember feeling overwhelmingly grateful to all the parents before me who pushed for this law because now I was the parent of a child with a disability who desperately needed these supports.

Toward the end of the first PIP session, we were introduced to the current service delivery system in North Carolina.  I knew nothing about this system.  Whenever I tried to access services, our family was always denied access due to income.  However, that evening at dinner with several other PIP participants, I learned of the Community Alternative Program for Children and Adults with Mental Retardation and Developmental Disabilities (CAP MR/DD).  I remember sitting at the dinner table with the other parents and listening to their conversation about CAP.  I heard the acronym “CAP” several times before I interrupted and asked for clarification.  The families simply stated it was a Medicaid waiver.  I heard the word Medicaid and immediately gave the same reply I had heard for eleven years – “We don’t qualify because of income.”  The conversation immediately stopped and all eyes turned toward me.  “Income doesn’t matter,” said one of the parents.  “It’s a waiver,” said another.  I know my jaw hit the floor.  I immediately teamed up with the parent sitting next to me and picked her brain on the particulars of this waiver.