A Significant and Subtle Difference: While on the campus of my daughter’s school Sunday I ran into a mom whom I have mentioned here previously. Her daughter has two more years at school before she “ages out” into the adult special needs community. It is increasingly clear to me that a seemingly innocent evaluation by DDS case managers of level of need  becomes a determining and devilish document. Parents are asked to assess their children’s abilities in a host of areas, specific and concrete. But the answers are neither. Whether it is called PRAT as in Connecticut, or MASSCAP or some other acronym, beware.

Trick Question? As this mom mentioned, a simple question such as “Can your daughter get herself out of bed in the morning?” can be answered in so many ways. Yes, she can slide off the bed and walk out of her room and come downstairs. But does that mean that on her own, she will wake to an alarm, get cleaned up and dressed, eat her breakfast, and be ready for the day? On her own? Can she empty the dishwasher? Well yes, but when she dropped the glass and it shattered, she stood frozen and frightened, not knowing what to do.

The Devil Is in the Details: Another mom and I went over the difference between our children cooking an egg on the stove. Yes, she can make a scrambled egg, toast and juice. But if the pan flames up, or the paper towel catches fire, what then? Level of need, decision making ability, follow through, time management: be careful when answering these questions.

Worst Case Scenario:  One always wants to think one’s child can do more than less. But optimal is not what is called for here. Worse case scenario is actually the better measurement to use when asked to assess your special needs child’s independent functioning capacity.

Falling Through the Cracks: Today, a mom told me that her son, whose IQ is 81, cannot receive any services beyond completion of schooling at age 22. His IQ is too high. Can he drive? Not any time soon. Can he make decisions that will keep him safe? Not any time soon. Where does this young man go for further support in the future? So far, nowhere. The system fails hosts of young adults because the IQ test, taken before the age of 18, does not measure true functioning in the real world, and sets a bar so cruel that it takes ones’ breath away (each state sets its own bar, give or take a few points here or there, 69, 70, splitting hairs to save bucks). This is a national outrage! Children in the Autism Spectrum frequently fall into this category.

Milk of Human Kindness? What a tough system. So start early and be super aggressive! Speak to everyone and learn the ropes because this bureaucracy is not known to have big buckets of the milk of human kindness on its shelves.

©Jill Edelman, M.S.W., L.C.S.W. 2011