Theme: Guardianship

The mother of a 21-year-old son with complex chronic conditions offers some tips for getting guardianship with DNR rights. She talks about the MOLST too. “It’s good to have all your ducks in a row.”

Theme: Guardianship

Parenting is a lifelong process, and it is particularly so for parents of children with serious illness, where the child’s chronological age may not correspond with their developmental baseline. While your child is a minor, you can make all medical decisions for them just by virtue of being their parent. But when your child reaches adulthood (age 18 in most states), their legal status changes, and they are now presumed to be capable of making all major decisions on their own, regardless of their disability. This can create many problems for parents and others who are caring for them. However, many of these problems can be avoided if you go to court to become your child’s legal guardian. Having guardianship lets you make medical decisions for your child and provide uninterrupted access to medical care and supports.

Theme: Guardianship

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, explains how she and her ex-husband share guardianship now that Katie has transitioned to adulthood. “I have to consult with him on all those major decisions.” They process things differently but they usually see eye to eye.

Theme: Guardianship

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.”