05/10/2022
From a Concerned Parent
I just finished listening to the webinar on New Jersey’s HCBS Statewide Transition Plan. I do not mean to sound disrespectful, as I know this is largely driven by federal mandates, but I felt like I was listening to members of a cult with an impenetrable worldview that does not include so many of our severely disabled loved ones. The emphasis on independence, choice, right to privacy, employment, community integration reflects a desire on the part of government to pretend there are not adults in our society who need intensive, lifelong care and support. Maybe government wants to get out of the business of supporting our most vulnerable, I don’t know, but the disconnect between policy and reality is profound and deeply disturbing.
Adults with severe intellectual disability, severe autism, medical fragility, etc. need the opposite of what was presented in the webinar. They need lots of supervision and direction. They need hands on help with daily living skills. They rely upon others to meet their nutrition needs. They need structured, planned, meaningful programming in day programs and in residences. They need intensive staffing, often one to one support. Staff persons need to be highly trained to meet the unique needs of the population served, and well supervised by knowledgeable, educated professionals. They need the ongoing support of health and mental health professionals, as well as the involvement of others—OTs, PTs, speech/language therapists, recreation specialists, art and music therapists, nutritionists.
Can we not start with data, with facts? Where are the stats that show us what our NJ developmentally disabled population looks like? What are the percentages of adults with mild, moderate or severe challenges, including cognitive, medical/physical, behavioral? What are their service and support needs? What models of day/vocational programming and housing best meet the real needs of these subgroups? No more wishful thinking. Let’s get real.
