Sunday, February 28, 2016
New Jersey attorney and parent speaks in defense of campus settings for ID/DD
Lisa Parles Speaking at the 2015 EASI Foundation and Families CCAN Conference
Lisa Parles, is a New Jersey attorney and the parent of a young man with severe autism. On October 15, 2015, speaking at a housing conference in Philadelphia, she gave an eloquent talk in defense of campus settings for people with intellectual and developmental disabilities. Her son Andrew lives in the Bancroft Lakeside community in Gloucester County, New Jersey.
Lisa Parles’ son went through a regression at the age of 19, something that is not uncommon among teenagers with severe autism and other developmental disabilities. At the time, he lost his ability to speak, had severe self injurious behaviors, and did not sleep for days on end. There are many people like Andrew that most people do not like to talk about, but Parles believes parents need to speak up about their children so that services necessary to help them will be available.
She believes that the campus setting with a full array of services on campus is a clinically superior model for a vast number of individuals affected with developmental disabilities. It provides economy of scale (more resources concentrated in one place serving more people at less cost per person), more flexibility for the individual and staff, on-campus resources for people who cannot leave the area without being harmed or causing harm to others, behavioral and nursing services available when needed, and a greater sense of family and community than is found in many smaller settings.
More from Lisa Parles:
The federal Home and Community-Based Services (HCBS) rule assumes measures of “success” that can actually be harmful for some people with severe DD: having access to food whenever one wants, being able to choose a roommate, having the freedom to come and go as one pleases, living at home vs. living in a group setting, to name a few. Parles responds by saying, “[for] some people.. access to the refrigerator is eating until they die. A key to the house means elopement and [being] hit by something in the street. choosing a roommate is not an option because for my son he can’t have a roommate. When my son doesn’t sleep for two days, he almost can’t have a housemate.”
On the relatively high cost of maintaining someone in a congregate setting compared to another person living at home with one's family, she says, not only is living at home not possible for many with the most severe disabilities, but “Sometimes what it costs is what someone needs. So to say we can do twenty people in a home situation for the price of one in my view its the equivalent of saying we can give out a thousand bandaids or one surgery. When you need the surgery, the number of bandaids don’t count.”
On redefining “success”: “The direction we’re going…who’s getting to define what a community is, who’s getting to define what success is? They’re on the wrong path.”