Female and Special Needs: Our daughter qualifies for 24/7 supervision, so far. This designation is based on a group of factors including navigating safely while traveling to different settings; transitioning from one activity to another on time, such as sleep to work; social judgements along the lines of what to do if approached at the mall by strangers; making decisions in a crisis which could range from a cooking complication to medical to someone trying to break into the apartment: in other words, safety. These and other skills are related to deficits in “executive function”, a term that describes cognitive processes related to decision making, organizing time, predicting outcomes and is thought to be located in the frontal lobes of the brain.

Affordable Housing: It is comforting to know that someone will be with our daughter and her roommate at night when things can go wrong, and decisions have to be made quickly and correctly.  However, what is not yet certain is whether she can live in a community that her parents think best meets her safety needs, if that community does not have housing considered affordable or appropriate to DDS.

The other mother and I have applied to affordable housing in the town, but that can take up to two years.

Easily Targeted: Safety for a special needs young adult, small in stature and attractive  is a super high priority. All parents of daughters wrestle with concerns about sexual predators or date rape. For a parent of a special needs daughter, this issue takes on an added dimension as these young ladies can be viewed as “easy targets”.

Compromise? We have never compromised on our daughter’s quality of life before and I can honestly say that we will not compromise now. The financial reality for families who have limited means (in other words, do not have unlimited financial resources) and parent special needs adults places them in the hands of the bureaucrats. We are at some crazy crossroad here; but this is our adult child and we will make sure that she is safe and happy.

©Jill Edelman, M.S.W., L.C.S.W. 2011