How many of you are engaged in fighting a growing counter-revolution by families of individuals who have more “significant” needs, e.g. individuals who are nonverbal, non-ambulatory, apparently non-responsive and require 24/7 nursing, and are claiming that our programs do not benefit their children. They believe that their children cannot be well served in home and community based settings and that state-run institutions are the ONLY setting that can care for their loved ones. These are not families of individuals who were placed in institutions decades ago. These are families of younger and middle-age adults who are presently living with their parents.
For a start, I am looking for vocabulary to properly describe the needs of these individuals. The parlance of the State of Connecticut uses a Level of Need (LON) scale, reducing a person to a number between 1 and 8. Otherwise the best terminology that I have found is the definition of active treatment (AT) services that determine eligibility for Medicaid ICF/DD.
Director, Connecticut Council on Developmental Disabilities
460 Capitol Avenue
Hartford, CT 06106
(860) 418 - 6157