When a medically complex child ages out: Guardianship and medical decision-making.

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes the complicated and cumbersome process of getting guaradianship when her daughter transitioned to adulthood. So much paperwork, notifications, legal bits. Also — Guardianship doesn’t automatically cover critical decisions such as medical orders. “It was surprising and upsetting to learn that I wouldn’t have the authority to make all the decisions I had before. I was flabbergasted and angry. I know her best.”