Several years ago I had the honor of speaking at the VOR annual conference in DC. This group is really important and I invite every AofA reader to get to know them. While many are fighting to limit housing choices, VOR takes a rational approach. For some with severe disabilities, an "institution" that has been home for decades is HOME. We don't call dementia care facilities institutions, but what are they? As the autism epidemic continues to grow and children age into adulthood, where are many to go? I just read on a special needs FB page about a Mom who overheard a worker telling a consumer with autism to "SHUT UP!!!" over and over in a WalMart. One person knows another etc in the groups and it turns out this young man lives in a group home. With workers who in PUBLIC tell him to SHUT UP which means in PRIVATE they do much worse. I'm not against any living situation that works for a family. And we ALL accept that nothing is perfect. If you think about it, some severely affected adults with autism NEED and thrive in an "institution" - a living site that is designed for autism. Safe. Engaging for their intelligence. Staff able to handle and help severe behaviors. SAFE. SAFE. SAFE.
During my speaking gigs, I always make the joke, "Well, I have three daughters with autism so we ARE a group home." Insert laugh track here. It's not joke. I'm going to die. And where will my girls live? Where will your kids live?
VOR posted this blog entry from the DD Newsblog (which is not part of VOR) yesterday on Facebook in response to news out of Pennsylvania in September about closures.
PA Governor announces final decision to close two of four state operated facilities for people with IID without consulting residents, families, or state legislators
Susan Jennings' severely autistic son suffered for years in abusive community care, often in a toxic over-medicated state, until the Jennings went to court and gained admission for their son to an Intermediate Care Facility for individuals with intellectual disabilities (ICF/IID). White Haven Center in Luzerne County, Pennsylvania, has the right combination of services to control his maladaptive behaviors and a setting that provides close supervision and the safety he needs to thrive. [See "Joey's Journey" for a full account of the ordeal that led to White Haven Center]
Three weeks later, according to an AP report on August 14, 2019, the Pennsylvania Department of Human Services (DHS) announced plans to close two of the remaining four state centers for individuals with intellectual disabilities, including Joey's home at White Haven Center: "The Department of Human Services said Tuesday that public meetings will be held next month to gather comment on the plans to close the Polk State Center in Venango County in western Pennsylvania and the White Haven State Center in northeastern Pennsylvania's Luzerne County"
The DHS declared that the decision to close these two facilities is final, but also admitted at a legislative hearing on 9/24/19 that the decision was arrived at without consultation with residents, families, facility staff, or legislators.
The Pennsylvania DHS, according to the AP account, "....promised to work with residents and families, meet with potential community service providers and come up with 'individualized transition plans.' Officials said every Hamburg center [which closed in 2018] staff member who expressed interest in continued work for the state was offered a job prior to closure or in the one-year contractual placement period afterward."
Residents and families, however, have the option of choosing to continue to receive ICF care if they disagree with the decision to move residents to community placements. This is a holding of the 1999 Supreme Court Olmstead decision that states that a person in institutional care may be moved to community care as long as the affected individual does not oppose treatment in the community. This stipulation is largely ignored by state agencies and advocacy groups who ideologically oppose institutions and tout the overwhelming success of community placements for people with IID. READ MORE HERE.