25% to 40% of people with schizophrenia will require extensive support for most of their lives. Without adequate credentialed facilities and support services, many end up homeless or in prison. By 10 years after their first diagnosis, 10% of people schizophrenia have died, mostly by suicide. By year 30, 15% have succumbed. Katherine and Ilene hope that in the future, these will not be the statistics but in 2014, they are.
Paul Flannery, was one of these people. As the years went by, his social service agencies’ focus shifted to moving everyone into independent living, regardless of recovery level. Paul’s ability to handle and benefit from living in community was always in direct proportion to the degree to which he was supervised and supported. He blossomed with it, but suffered and regressed as it was withdrawn. Their family was thankful that there were people willing to participate in that supervision when it was adequate and frustrated when he went without.
When Paul developed lung cancer, the family stepped in to help him navigate the medical labyrinth and cared for him till his untimely death at age 48. "We got as much from caring for him as he did from our care."
Ilene is his twin sister and heads a group called Paul's Legacy Project which advocates for equal medical treatment, regardless of the organ of the body from which the illness originates.
Katherine Flannery Dering is the author of the recently released book about Paul and the family called Shot in the Head A Sister's Memoir, A Brother's Struggle which has been compared to a realistic I Know This Much to be True by Wally Lamb. Her book follows this journey. As Ms Dering explains:
"My younger brother Paul was more than a 'schizophrenic', he was a brother, a son, and above all, a person that my eight siblings and I loved. My family had lived with Paul's condition for years, and had grown used to his strange stories and sometimes frightening behavior. It wasn't until his care -- and his treatments for lung cancer -- started taking more and more of my attention that I realized his story demanded to be written."
His story and the story of the family is the topic of Shot in the Head A Sister's Memoir, A Brother's Struggle which one reviewer called both "powerful and emotional".
Dorothea Lynde Dix, 1802-1887 , was a social advocate in the early to mid-1800’s who fought to get people with mental illness out of prisons and into hospitals. Like her, Katherine and Ilene have become advocates to ensure that the unfortunate 25%-40% have access to the appropriate residential facilities that will include supervision and life enhancement opportunities. They believe the Medicaid IMD exclusion should be repealed and work to that end. They also encourage all family members to become active in the advocacy for their ill family member, whatever their recovery level.
Their poster presentation (P 10) is in Exhibit Hall A from 2:00 to 3:30 PM on Sept 4.
Ms Dering will have copies of her book, Shot in the Head A Sister's Memoir, A Brother's Struggle available for sale at the conference. It is available at Amazon, Barnes and Noble, other stores and on Kindle, Kobo, Nook, Google Books and Apple I-Store.
Following the NAMI conference, Ms Dering will be in the San Francisco Bay area. On Sept 8, she will be speaking about her book to the NAMI Sacramento chapter in a free talk that is open to all. It is at 7:00 pm–8:30 pm Conference Room 1B Sacramento County Division of Mental Health Building (the building with the clock tower) 3331 Power Inn Road, Sacramento, CA 95826.
On September 11, she will be giving a presentation to students in Abnormal Psychology at Dominican University of California in San Rafael
On Sept 15, she will be reading from her book to the Marin County NAMI Chapter and talking about "Beyond Laura's Law . . . " the role of family and community in the care of people with serious mental illness. That will be at 7:00 PM at Connection Center, Room 110 on the Marin County Wellness Campus - 3240 Kerner Blvd., San Rafael.
On Sept 17, she will be reading from her book and talking about Laura's Law at the Marin County Public Library in Novato at 7:00 PM.
For information about her book, visit http://bridgeross.com/
This is an earlier talk by Katherine https://www.youtube.com/