Sunday, March 04, 2012

Justice? Severe Adult Autism Reality In California

Kim Oakley author of  Autism, Epilepsy and Self-Injurious Behavior has broken the autism feel good cliche glass, again, in No Justice for Severely-Autistic Adult in California a comment about Van Ingraham "a severely- autistic man who had his neck broken in 2006, while living at Fairview Hospital, one of California’s Developmental Center’s that serves the forgotten population of adults with severe autism and behavioral issues."   Oakley's comment highlights  excerpts from a report  titled Basic police work ignored in autistic patient’s suspicious death by Ryan Gabrielson published February 24, 2012 on California Watch,  Founded by the Center for Investigative Reporting.


The suspicious circumstances of Van Ingraham's death as reported on California Watch is not easy reading for me as the parent of a severely autistic 16 year old son.  The pictures posted with the report are also very moving.  I am sure it is not easy for Kim Oakley as the parent of a severely autistic son to provide her comments but she does so and her thoughts should be read and considered by anyone facing similar challenges, including public authorities responsible for caring for severely autistic adults. 


I strongly recommend both the California Watch report by Ryan Gabrielson and the comments on the report by California autism advocate Kim Oakley who never shies away from highlighting the challenges faced by those living with severe adult autism realities.  One point emphasized by Kim Oakley is the need for hidden surveillance in ALL rooms of institutions for those living with severe adult autism realities.  Without surveillance there is little way of knowing what happens to a severely autistic adult who dies or is injured under suspicious circumstances.


I commented on August 19, 2007 on a Newsday report of a severely autistic adult woman who was severely beaten by attendants who were only caught after the assaults were captured on video cameras. The Newsday report stated:


"Newsday, August 18, 2007

An autistic resident of a Long Island group home was beaten with a shoe and a wooden coat hanger, slapped in the head and kicked by several employees whose vicious assaults were captured by a hidden video camera, Nassau County police said.

The helpless 50-year-old victim was battered repeatedly at the PLUS Group Home Inc. by at least four employees after one of their co-workers alerted police to possible mistreatment of the residents inside the Uniondale facility, police said.

Group home management then installed the camera inside air conditioning vents at the home, according to Terri Cancilla, executive director of the PLUS Group Home Inc.

...

Authorities said the victim can not speak or convey emotions or pain because of her disease, which is characterized by impaired social interaction."



In my 2007 commentary on the Uniondale facility assaults I made the observation that:


"This poor soul could not speak for herself. And the animals who savaged her knew it. Perhaps video cameras in all areas of institutions with non communicative residents should be mandatory. So that the videos can speak for them when they are subject to abuse."

I agree with Kim Oakley.  Video surveillance should be mandatory in all rooms and areas of facilities providing residential care for persons with severe autism and other communication challenges.  If they were mandatory in California before Van Ingraham died he might be alive today.  

6 comments:

Stranded said...

This makes me numb.
I hope this man gets some justice.

Anonymous said...

Though I agree this was an avoidable tragedy...people with disabilities have strong individual rights in California that are considered paramount even in institution settings such as Fairview Developmental Center.

Setting up video camera's in clients rooms would be considered a blatant & unacceptable violation of their privacy & dignity.

As a patient advocate and someone who knows the inner workings of this institution.

This was no doubt a horrible & gross failure of employee monitoring & oversight by unit supervisors & management.

California is one the few states that actually requires professional licensing & training for institutional care givers.

Along with this training & licensing comes personal and professional accountability.

Having witnessed the lower level of standard care and training that are required & provided in others states to the developmentally disabled; I must believe this is not a systemic problem in the state developmental facility system in California.

There are safe guards and proper remedies already set in place that it appears were not employed & followed in this particular matter.

I strongly believe that the care giver individual involved & any one else at supervisory, management, or investigative levels with oversight responsibilities in this tragedy should be held accountable by pertinent professional monitoring boards, in accordance with state policy mandates & directives, and to the fullest extent of the law.

I'm actually quite shocked, saddened, and dismayed that this has not happened in this case.

A thorough independent examination of this tragedy must happen without delay; as appropriate measures & remedies should be immediately put in place to avoid any further horrific incidents like this from ever happening in the future.

I would like to add that the vast majority of the care givers I have directly observed and worked beside in the California State Developmental System were both professional and loving care providers.

Kim Oakley said...

In response to Anonymous, who is under the delusion that California is doing a swell job taking care of disabled, here's some historical evidence to bring you back to planet earth: • San Francisco Chronicle: August 4, 1997; Agencies for disabled in disarray. “The sprawling bureaucracy that controls more than $1 billion a year for developmentally disabled Californians is plagued by mismanagement and financial abuses so severe that the health and safety of the disabled have been jeopardized. State officials have known for two decades of serious problems in the network of 21 private, state-funded regional centers…More than 100 interviews and thousands of pages of audits, state reports and court documents revealed that some centers have been linked to embezzlement, fraud and unethical financial deals. Hundreds of children and adults with varying degrees of mental retardation, autism and cerebral palsy have received inadequate services—or no services at all—though the state and federal governments have increased regional center budgets by millions of dollars a year.”• June 23, 2001, Los Angeles Times: “State officials have moved to revoke the licenses of 14 homes and day care centers for developmentally disabled adults operated by an Anaheim company accused of allowing clients to be sexually and physically abused.
• February 25, 2001, The Sacramento Bee reported: “…a class-action lawsuit filed last year in an Oakland federal court on behalf of several disabled Californians and a handful of advocacy groups…. Allegations are that the state has failed to provide adequate services for disabled people

Anonymous said...

In response to Kim Oakley: please tell everyone what is
"delusional" about my personal/professional experience & observations?

Quote: "I would like to add that the vast majority of the care givers I have directly observed and worked beside in the California State Developmental System were both professional and loving care providers.

I could respond in retort by devaluing your personal experience. Yet, I see no solutions or progress to be had in this sort of ad-hawk attack oriented expurgation among like concerned citizens and patient advocates.

I have never stated that California didn't have many bureaucratic problems within the confines of developmentally disabled system. Nor did I comment upon privately run group homes or services being provided outside of the Fairview State Developmental Center.

Having worked with a very broad spectrum of disabled populations running across the entire gambit; I will stand by my statements that California provides some of the best & thoroughly monitored institutional services among & for the developmentally disabled I have personally witnessed.

I challenge Kim to visit facilities and do some research into what other states are providing or not providing their developmentally disabled populations.

Where I presently reside in Washington State I have found that care givers are not trained or licensed to provide adequate services to these populations (direct care providers with the qualifications of a McDonald's counter worker!! that's irresponsible). The level of care & opportunities afforded this population are beyond sub-par when placed in comparison to those heavily regulated & overseen in California.

I find it counter productive (& mind-boggling quite frankly) that you would be attacking someone who advocates for the absolute best quality of care & services being provided to those with disabilities.

I would hope that Kim would take the time & effort to step back from her personal situation/prospective and take a broader & more productive view of the problems that face those with disabilities in need of these more intensive services.

In perfect world we wouldn't have to read these stories of abuse & tragedy. But we don't live in a perfect world; we live in a world of dwindling resources and with fallible human beings charged with caring for others.

The unfortunate & sad reality is that some bad apples will permeate into the system no matter how careful we attempt to make it. That is why I have called for independent oversight & accountability when these kinds of horrific tragedies occur. There is always much room for improvement, as this highlighted situation clearly demonstrates. That doesn't always mean "throwing out the baby with the bath water" so to speak.

There are no doubt many short comings and failures in any government bureaucracy.

California's Regional Center and state institutions have no patent on this commonly known & present reality. I would hope that the ultimate goal of all concerned advocates; would be to work together in holding the system & individuals accountable to their care responsibilities: while providing as many safe guards as possible to protect and provide vulnerable populations with the greatest level of services within the constraints of resources that are made available.

PS: I also happen to stand for more resources being provided to home care providers of these disabled populations.

Cameron said...

Sounds like Ms. Oakley hit it on the head. Probably lots of well intentioned people in the industry of caring for people with Autism and other conditions which are extremely taxing on the caregivers(with no vested interest other than a paycheck). Seems what is needed is perhaps more government oversight and ongoing funding and training. But it seems like the Armed Forces personel returning with PTSD that issues like ours are swept to the side as they're too depressing or time consuming to deal with. Well guess what...these issues are here, now and the sooner we start talking...keep talking and deal with them , the easier it's going to be later on. More fuel for the fire Harold thanks for the post. Cam.

Kim Oakley said...

To Anonymous, I'm sorry I offended you. I get emotional and passionate about these issues. I presented you with facts. I shouldn't have described your view as "delusional" that was harsh. I picked the wrong adjective. Perhaps "naive" would be more appropriate. Nevertheless, good points are made and perhaps other states are doing a better job, but you did say you were basing your opinion on "the vast majority of the care givers I have directly observed and worked beside in the California State Developmental System were both professional and loving care providers." I gave you the evidence that this is far from reality of what is going on.