We have heard from people like this for many many years and probably always will . Granted there is far less of it now that when I started 20 years ago but its still an issue.
I sit on a board with one such individual who has a son with such intensive medical needs that he is rarely out of a hospital setting anymore. He is medically frail, has mental retardation, sever seizers disorders, nonverbal, unable to feed or take care of
himself in any way.
This parent said something to me once I never forgot; when you can demonstrate to me that he has the medical care and safety his situation requires I will reconsidered. “ A
lot has changed since then and there are indeed many many wonderful options available now that were not available when she said this to me years ago. But – it goes to the heart of the matter in that when they see others with similar needs and are assured
can live ‘safety’ & have a good quality of life (physical and medical safety is the center of their concern) they will be open to a different decision. And – many have. But, it doesn’t happen overnight. Unfortunately, there will always be a certain number
whom we will never, ever convince and it’s sad on so many many levels.
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Serving individuals who have more “significant” needs - Glomb, Walter
(28 Aug 2018 13:22 EDT) |
Serving individuals who have more “significant” needs
by Glomb, Walter (28 Aug 2018 13:22 EDT)
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Dear friends,
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.
Thank you.
Walter Glomb
Director, Connecticut Council on Developmental Disabilities
460 Capitol Avenue
Hartford, CT 06106
(860) 418 - 6157