Opinion/Murray: Ava's story shows how RI fails kids with disabilities
Morna A. Murray is executive director of Disability Rights Rhode Island.
The Journal article “Ava gets bubbly" (News, April 27) was full of hopeful news regarding the apparently successful treatment of a young girl with the use of electroconvulsive therapy.
We deeply sympathize with a family with little to no options. But the overly rosy picture you paint is not always the reality, and it is irresponsible not to present the downside.
The article states, “Exactly how it works remains something of a mystery, still a focus of research.” What the research does show is that individuals treated with ECT are 16 times more likely to attempt suicide in the year following their electroshock therapy. Up to one half of people who receive ECT experience extended periods of memory loss after their treatment. Further, ECT has been associated with much higher rates of cardiovascular failure.
You correctly note that researchers cannot agree on either the effectiveness or the dangers of this procedure. These life-altering decisions are made every day by parents of children with disabilities, desperate for solutions to challenges most people cannot even imagine.
With all that, we might miss one of the most tragic aspects of this young girl’s traumatic journey — her extended period of institutionalization. Ava was hospitalized for almost a year before receiving ECT and now, as a 12-year-old girl, she will be placed into a group home to await her return to her family. This terrible predicament is all too common in our state. Again, we sympathize with a family with very few options. At the same time, a day without her family is one day too many for this little girl, and she has had to live hundreds of those days.
This is a heartbreaking illustration of a failed system that too often dehumanizes and segregates people with disabilities into an institutional setting rather than do the substantive (and far more economically sound) work of providing home-based and person-centered preventative services and treatment in the community. No child should have to leave home to get the help they need. How have we gotten to a place that such a thing is even considered, much less acceptable?
And how does the state create such a system of care?
Three years ago, at the request of Disability Rights Rhode Island, the Center for START (Systemic, Therapeutic, Resources and Treatment) Services, an initiative that works to strengthen community-based resources and now works in more than 20 states, conducted an extensive analysis of community-based services for people with intellectual, developmental and mental health disabilities.
The results, delivered at a public event to overwhelming support by state officials, demonstrated alarming deficiencies and provided a detailed, cost-efficient roadmap for addressing them.
While state officials initially committed to following START recommendations and building necessary services and a safety net, it has gone the way of so many state initiatives, faded to nothing. We hope this column may raise alarm anew about this critical situation.
This article originally appeared on The Providence Journal: Opinion/Murray: Ava's story shows how RI fails kids with disabilities
