Autism Self Advocates Respond to WP Article on Abuse

The Washington Post reported a crime story on July 21st, 2014, about 22-year-old autistic twins who were found in deplorable conditions in their parents' house in Rockville, Maryland. The twins were locked up at night "in a basement room with no furniture, no working lights and a single comforter on a bare tile floor, according to Montgomery County arrest records." They were discovered when police came to the house on an unrelated matter. The parents were susbsequently charged with abuse and false imprisonment.

As is often the case, when a sensational story such as this one is widely publicized, it sets off further discussion of related and tangential issues. For example, incidents involving mass shootings by people with untreated severe mental illness led to widespread discussion and reflection about society's responsibility to people with mental illness and their families with related appeals to restrict the access to guns by people who are mentally unstable. Discussions and commentary of this type can occur without interfering with the prosecution of crimes or sympathy for the victims.

In this case, many questions emerged from the crime report: What stresses are parents under in taking care of severely autistic adults?  Do they get the help they need and can further tragedy be prevented by assuring access to such help?  Do we as a society have a responsibility for our fellow citizens, both people who have severe disabilities and their family caregivers? In this vein, The Washington Post followed up with another article on 7/26/14, "Coping with adult children's autism, parents may face 'least bad' decisions" by Dan Morse.

The Autistic Self Advocacy Network (ASAN), a national non-profit organization that "seeks to advance the disability rights movement with regard to autism",  issued a statement on 7/29/14 beginning with, "The Autistic Self Advocacy Network is deeply concerned by both the recent case of abuse in Rockville, Maryland and the Washington Post’s reprehensible article calling the abuse of autistic adults the 'least bad' decision for families."

ASAN further states that,

"While much of our work focuses on the expansion of services and supports to people with disabilities across the lifespan, we emphatically reject and condemn any effort to present inadequate service-provision as the cause of or a mitigating factor in the abuse of people with disabilities by their families…

"People with disabilities deserve the same access to justice and the same freedom from abuse as the non-disabled population. Media narratives that sympathize with those who abuse their children set the stage for future copycat incidents, and make intervention by law enforcement and the broader community less likely. We urge a robust prosecution of John and Janice Land and encourage the Washington Post to review the appropriateness of their recent article justifying the abuse of the Land twins."

The title of The Washington Post article appears to have been inspired by a statement made by the father of another autistic adult who is quoted in the article as saying, "We can't condone their choices,…but it's possible that, in their minds, this was the least bad way to deal with this." Nowhere in the article does anyone condone the abuse of people with autism, but there is empathy with the parents, especially by other parents who are often placed in a position of trying to do more than most people would believe is humanly possible in caring for their children and then continue to do it without help or relief.

That this might be a mitigating factor in sentencing for the parents will be up to the court to decide, but empathy with the parents in this case is not the same as condoning or dismissing what they have done. As far as "future copycat incidents",  I would think that the public humiliation and shame that most people would feel in similar circumstances as this, would be enough to deter parents from doing the same and may even spur families to seek more help and advocate for more attention to factors that may lead to incidents of abuse and neglect. 

Outside of newspaper reports on this case, I know nothing about the parents. They may just be horrible people who deserve no sympathy, or they may have been at the end of their rope, pushed "over the cliff" by circumstances beyond their control, or something in between, but empathy for parents, understanding, and reflection are not equivalent to promoting criminal behavior.

See Adults with Autism "going over the cliff"

Connecticut: Abuse and neglect in residential facilities

Disability Scoop, in an article by Michelle Diamont, "Senator Seeks Federal Probe of Group Homes", 3/6/13, reports that the U.S. Senator from Connecticut Chris Murphy has asked for “an immediate investigation into the alarming number of deaths and cases of abuse of developmentally disabled individuals in group homes.”

The article says, "Specifically, Murphy urged Inspector General Daniel Levinson [in the U.S. Department of Health and Human Services] to focus on the 'prevalence of preventable deaths at privately run group homes across this nation,' citing increased privatization of residential services for those with disabilities in recent years."

It goes on to say, "The senator’s request comes in response to a recent series of articles in the Hartford Courant detailing cases of abuse and neglect of those with developmental disabilities at various residential facilities in Connecticut. The newspaper found that there were 76 deaths of those with developmental disabilities between 2004 and 2010 where officials cited abuse, neglect or medical errors…Murphy indicated that similar reports have emerged in recent years from Virginia, New York, Massachusetts, Louisiana and Texas."

This article from the Hartford Courant, "Abuse, Neglect Cited As Factors In Deaths Of Dozens of Developmentally Disabled In State Care" By Josh Kovner, Matthew Kaufmann and Dave Altimari details the Hartford Connecticut Courant's findings in its investigation of abuse and neglect in the state's facilities for people with developmental disabilities, including public and private group homes, nursing homes, and institutions.

According to the article, "The Courant's review of state records associated with the more than 100 deaths revealed systemic flaws in the care of the developmentally disabled, ranging from breakdowns in nursing care to gaps in the training of staff to lapses in agency oversight….

"Developmentally disabled people were scalded to death in bathtubs; were fatally injured in falls while on medication that affected their balance; choked to death on solid food while on ground-food diets; died of illnesses despite showing symptoms for days or even months; and succumbed while being physically restrained...

"In 2001, a Courant investigation of deaths of intellectually disabled people in state care identified 36 cases from 1990 to 2000 in which abuse or neglect played a role in the death. The Courant found more than twice as many cases from 2004 to 2011, despite added oversight by the agency now known as the Department of Developmental Services. Now, budget pressures are further straining a system that many believe has reached its breaking point."

The article includes links to other articles in the series investigating the care of developmentally disabled people in Connecticut.

The VOR Weekly News Update from March 8, 2013 also covers the Disability Scoop story and provides this link to a blog from the Southbury Training School. The blog post urges the state of Connecticut to reconsider its decades-long decision to close admissions to the training school and to see STS as part of the solution to the current crisis in care in Connecticut:

"STS is a critically important state asset.  On its campus are group-home-style residences as well as medical and dental facilities that serve both its own residential population and many people in the community.  Those facilities are staffed by on-site doctors and nurses and by specialists who regularly visit the residents, most of whom have severe and profound levels of intellectual disability and complex medical conditions…

"In response to a court settlement in 2010, the state has stepped up its efforts to encourage guardians to move residents out of STS and into the community-based group-home system.  However, there is currently a waiting list for residential placements in that system that is conservatively estimated at more than 1,000.  There are not enough group homes for people who need them. 

"Anyone who agrees to leave STS will be moved quickly to any open or newly built community-based residence.   But that means that they are moved ahead of many other people developmental disabilities, who may have been waiting for years for a residential placement.

"The result is that ever larger numbers of people are being kept at home with inadequate care or are being placed in nursing homes, which state officials acknowledge do not have the staffing expertise to care for them. "

Wisconsin law: good for business, bad for victims of neglect and abuse

Tort reform refers to changes in civil (as opposed to criminal) justice systems that reduce litigation or damages. In Wisconsin, tort reform that was proposed ostensibly to make the state more welcoming for business and to prevent frivolous lawsuits, has made it more difficult to hold long-term care providers accountable for abuse and neglect of residents.  A law that went into effect in February 2011 bars families from using state investigation reports as evidence in civil lawsuits against nursing homes and other care facilities. Health investigation records are also inadmissible in criminal cases involving abuse and neglect by providers.

An article in theNORTHWESTERN.com, 2/17/13, describes the plight of a 32-year-old man with spina bifida, brain damage, and paralysis who lived in a group home in Menominee, Wisconsin. He developed a bedsore that was so severe that doctors feared that he could be permanently bedridden. A state health department investigation report found that he had the bedsore for four months before he was hospitalized, a fact that the group home provider did not report to the state or his mother as they were required to do. The mother is suing the group home provider for damages, but her attorney is barred from using the state reports as evidence of neglect in court because of the law.

The Wisconsin Hospital Association and Wisconsin Medical Society favor the law, arguing "that barring use of state investigation records in lawsuits and prosecutions lets providers discuss problems more openly, thereby improving patient care." Wisconsin's Governor Walker defended the law, "saying it was needed to forestall 'this constant pattern of litigation' that could be seen as a negative by employers. He added that 'frivolous lawsuits (are) a huge barrier to economic growth and development.'"

The severely disabled man is slowly recovering after nine months lying on his stomach in a hospital and receiving treatment for his wound. He now lives in a nursing home.

I have to remind myself that this is not Bizarro world. This is Wisconsin!