Wednesday, September 17, 2014

Michigan: Parents settle lawsuit against school district in dismissed rape case

The parents of an autistic girl have reached a settlement with the girl's school district, Walled Lake Schools in Oakland County, Michigan (northwest of Detroit), in a lawsuit that involved accusations of rape and abuse against the parents that were communicated through facilitated communication (FC, or facilitated typing, as it is sometimes called).

Facilitated communication is a largely discredited communication technique, especially when it has been offered as evidence in court cases, where a person who is unable to talk because of severe cognitive disabilities types messages through a facilitator who usually guides or holds the arm of the disabled person. The communications have been shown to be more likely those of the facilitator than the disabled person.

An article in the Detroit Free Press, "Walled Lake Schools to pay parents in dismissed rape case" by John Wisely, 9/16/14, says that the parents, Julian and Thal Wendrow, settled a lawsuit against the school district for $1.1 million, just three weeks before the suit was scheduled to go to trial:

"West Bloomfield police arrested the Wendrows in December 2007 after a school aide helped their autistic daughter, who can't speak, type a statement accusing her father of repeated rapes and her mother of ignoring the attacks. The statement was written using facilitated communication, where the aide guides the child's fingers over a keyboard.

"The method has never been approved for courtroom use and critics insist the aide was the true author of the writings, either consciously or subconciously."

The article further states that, 

"The Wendrows claim their lives have been permanently damaged by the criminal case. Julian Wendrow spent 80 days in the Oakland County Jail before prosecutors dropped the charges for a lack of evidence.

"Thal Wendrow spent five days in jail before being released with an electronic monitoring device attached to her leg.

"When they were arrested, their daughter, then 14, was taken into protective custody. The couple's son, then 13, was interrogated by a detective who tried to get him to confirm the rape accusations by saying police had videotape of his father raping his sister."

The family has collected $3.75 million so far in settlements with the school district, the West Bloomfield Police, and the Michigan Department of Human services. A trial against the Oakland County Prosecutor's Office is set to begin on October 8, 2014.

Here are more troubling facts about this case:

  • There was no physical evidence that a rape had taken place.
  • The prosecution and the judge in the case accepted the girl's statements through FC as valid even though she functioned at the level of a two-year-old and did not talk. Even the prosecution's witness called to defend FC as a valid form of communication, did not believe the girl's charges and had warned the prosecution that her statements should be validated independently.
  • The girl's brother was interviewed by the police without notifying his guardian and without a parent or attorney present.
  • The primary objection to FC is that the communication is usually that of the facilitator and not the person who is being facilitated. The court still treated the girl's statements as evidence of a crime, reliable enough to have the father thrown in jail for 80 days.The case was dismissed after the girl was unable to answer even simple questions when her facilitator could not hear the questions being asked.
  • When the case was dismissed, the prosecution did not admit that they were wrong. Instead they said that the girl refused to testify because she was afraid.
Read more about Facilitated Communication and the case against the parents.

Tuesday, September 9, 2014

Deinstitutionalization: Not a good idea for everyone with Severe Intellectual and Developmental Disabilities

This is an article that was written by Tamie Hopp, the Director of Government Relations & Advocacy for VOR, the only national organization that supports a full range of residential and service options for people with intellectual and developmental disabilities. This includes support for institutional care in Medicaid-funded Intermediate Care Facilities as well as group homes, home and community based services, and care provided in the home of a family member or friend. The article, "People as Pendulums...", gives a history of reforms to the system of care for people with disabilities, along with warnings that we have gone too far in closing institutions and other forms of congregate care (serving people with disabilities in groups of more than three).


People as Pendulums: Institutions and People with Intellectual and Developmental Disabilities
Written by Tamie Hopp
Created on Wednesday, 16 July 2014 14:0 for the Nonprofit Quarterly

In 1965, then-Senator Robert Kennedy toured the Willowbrook institution in New York State and offered this grim description of the individuals residing in the overcrowded facility: “[They are] living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.”[i]

The atrocities of Willowbrook ushered in a generation of advocates, nonprofit organizations, providers, and professionals who successfully pushed for massive reform, beginning in 1971 with the development of Medicaid Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR), later renamed as ICFs for Individuals with Intellectual Disabilities (ICFs/IID).

Families and advocates alike applauded this infusion of federal funding, licensing, and oversight for a program specifically designed to meet the needs of individuals with intellectual and developmental disabilities (I/DD).

Still, as the ICF/IID program grew, so did calls for housing alternatives. Critics emerged, claiming that the ICF/IID federal standards of care promoted a non-individualized, inefficient model of care, and, due to federal financing incentives, discouraged states from developing alternate service options.[ii] In 1981, Congress responded by providing for small (4-15 person) ICFs/IID and a Medicaid Home and Community-Based Services (HCBS) waiver, to allow states to “waive” certain ICF/IID requirements.

These early reforms were quite properly motivated by the need for a system of care and supports that responded to the very individualized and diverse needs of the entire population of people with I/DD. These reforms, however, also set the stage for decades of ongoing deinstitutionalization, resulting in the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of “progress.” 

The Pendulum Swings

Even though initial reforms were motivated by a lack of service options (an over-reliance on the ICF/IID program), it was not long before efforts to “rebalance” our system of care shifted from the expansion of options to the dramatic reduction of ICFs/IID and other specialized options.

In 1999, the Supreme Court handed down its landmark Olmstead v. L.C. decision, which should have settled the deinstitutionalization debate. The Court expressly cautioned against forced deinstitutionalization, the “termination of institutional settings for persons unable to handle or benefit from community settings,”[iii] finding instead that the Americans with Disabilities Act (ADA) only requires community placement when an individual’s treatment professionals determine community placement is appropriate, such placement is not opposed by the individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with disabilities.[iv]

However, masterful messaging by nonprofit organizations and federally funded lawyers with mission statements and funding aimed squarely at eliminating all “institutional” options quickly (and incorrectly) characterized Olmstead as a deinstitutionalization “mandate” requiring “community integration for everyone.”[v]   While deinstitutionalization proponents had successfully closed many ICF/IID homes by 1999, the time of the Olmstead decision, the decision has only further fueled their efforts in the years that followed.

Has the Pendulum Swung too Far?

According to Samuel Bagenstos, former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases, the population of state institutions for I/DD now stands at approximately 16 percent of its peak.[vi]

The exit of ICFs/IID from the service landscape created a vacuum that lured nonprofit and for-profit providers into the business of human services. Between 1977 and 2010, the number of residential settings that served people with I/DD increased by a remarkable 1,598 percent, with most of these new settings being small and privately operated. In 2010, non-state agencies served 98.5 percent of people living in places with 6 or fewer residents. The number of home and community-based services recipients outpaced residents receiving specialized Medicaid licensed ICFs/IID by 676.1%, while the number of people receiving ICFs/IID care decreased by 63 percent.[vii]

As early as 1993, then-U.S. Rep. Ron Wyden (D-OR) pointed to the problems created by an unchecked expansion of providers rushing in to fill a need. “Increasingly, millions of Americans with these life-long handicaps are at risk from poor quality of care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies,” wrote Wyden in a March 22, 1993 report in his capacity as Chairman of the Subcommittee on Regulation, Business Opportunities, and Technology of the U.S House Committee on Small Business.[viii]

In 2000, the American Prospect magazine reported similar problems in its article, “Neglect for Sale,” which investigated a disturbing trend of large for-profit corporate providers capitalizing on the then-$22 billion (now more than $40.5 billion) in government spending on services for people with disabilities, turning care for individuals with I/DD “into a major growth industry.”[ix]

“It should not be surprising,” Bagenstos wrote, “that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.”[x] State officials were not keen on investing in the development of adequate community services after being told closing ICFs/IID would save them money, resulting in inadequate funding and compromised care. Bagenstos acknowledges adequate investment in community services, especially due to the cost of quality staffing, will meet or exceed the cost of ICF/IID care.[xi]

These outcomes are made all the more tragic due to their predictability. The failed deinstitutionalization of the mentally ill should have been an important lesson learned. “As events played out, large state institutions [for the mentally ill] were indeed shut down in the 1970s, but the promise of high-quality community-based care collided with the fiscal cutbacks of the 1980s,” wrote Eyal Press, author of “Neglect for Sale.”[xii]   Homelessness, incarceration and violence raise questions about “whether society’s concern for the constitutional rights of people with mental illness has led to their abandonment.”[xiii]

Predictable Tragedies as the Price of Progress

Even if some license is afforded to “hope”—a “hope” that history would not repeat itself when deinstitutionalizing individuals with I/DD—there is no excuse for continuing down a path that has in its wake repeated, widely reported tragedies in small settings for people with I/DD.

More than 150 media reports in more than 30 states since 1997 reveal systemic concerns in small settings for people with I/DD, including deaths, abuse, neglect, and financial malfeasance. In November 2011, the New York Times wrote that more than 1,200 people with I/DD in the past decade have died in group homes due to “unnatural or unknown causes.”[xiv] U.S. Senator Chris Murphy (D-CT) has called for a U.S. Department of Health and Human Services Office of Inspector General investigation to “focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.” [xv]

Georgia offers a particularly poignant example of the extremes by which “success” is defined by proponents of forced deinstitutionalization. An October 2012 federal settlement calls for the transition of its I/DD residents from ICFs/IID to community settings. In 2013, the state’s own reports showed that 10 percent (40 people) of those transferred to community settings in 2013 had died.[xvi]   Yet, United Cerebral Palsy, a national nonprofit organization, ranked Georgia fourth in the nation for its successful community inclusion of people with I/DD.[xvii]

Other symptoms of failed deinstitutionalization are less obvious, but no less harmful to people with I/DD. Waiting lists for I/DD services now number nearly 317,000 people,[xviii] emergency rooms have become de facto urgent care clinics for people with I/DD, and correctional facilities are replacement treatment centers for some individuals who experience both mental illness and developmental disabilities.

Conclusion: Why does this continue?

The original goal of deinstitutionalization, to provide opportunity to individuals not appropriately institutionalized and “rebalance” the system, was shared by advocates.
We have passed the 50 percent mark in most states—that point of “balance” when half the Medicaid funding for people with I/DD was spent on HCBS options and half on facility-based (“institutional”) options. In fact, the United Cerebral Palsy reported that “38 states now meet the 80/80 Community standard, which means that at least 80 percent of all individuals with ID/DD are served in the community and 80 percent of all resources spent on those with ID/DD are for community support.”[xix]

As advocates marched toward “balance,” and in most states exceed it, tragedies followed and seem to be more widespread. These tragedies, which should have been a wake-up call, have done nothing to stem aggressive deinstitutionalization. State-level fiscal conservatives still loathe spending money, yet safely serving people with complex needs requires adequate funding. Proponents for “community integration for everyone”—advocates, nonprofit organizations, federal agencies and providers—have a lot at stake, past and present. To change paths now is to admit failure and risk future funding.

Lost in this debate is concern for the individual. Person-centered planning, which is held up as the ideal by advocates, nonprofit organizations, and government alike, is short-changed by system-change advocacy to eliminate specialized care options for those who need it. Instead, we must figure out ways to meet individual needs versus wholesale approaches to providing care that end up being as bad as or worse than having an institution as the only option.

The legal framework is in place to support individualized care and choice. Advocates must set aside efforts to eliminate options of care and work together to expand options. This begins with a commitment to serving each individual: true person-centered planning.

Tamie Hopp is the Director of Government Relations & Advocacy with VOR, a national nonprofit organization advocating for high quality care and human rights for people with intellectual and developmental disabilities. For more information, visit

See this article on-line to read the footnotes.

See also VOR's documentation of abuse and neglect in small settings.

Sunday, August 10, 2014

Talking points for protecting DD individual housing choices

These talking points are found on the website of the Wisconsin Council for the Deaf and Hard of Hearing. They are in defense of a senior housing project in Arizona called Apache ASL Trails, a project specially designed for seniors who are deaf and use American Sign Language to communicate. The housing project received a complaint from the U.S. Department of  Housing and Urban Development (HUD) that they were discriminating against people who were not deaf and therefore in violation of HUD anti-discrimination policies. HUD finally backed down and withdrew its complaint.

This case parallels in many ways the plight of people with disabilities who live in or wish to live in congregate housing and planned communities that are freely chosen by the individuals or their  legal guardians, and meet the unique needs of the people living in these settings.

Many federally-funded advocacy organizations and the Centers for Medicare and Medicaid Services have insisted that funding through Medicaid waivers and state plan services to people with developmental and other disabilities may be restricted if the settings in which people live are too "institutional" and not  "community" enough as defined by the CMS. [CMS is the federal agency that regulates Medicare and Medicaid.] Influential advocacy groups and the National Council on Disability have gone as far as defining as "institutional" any setting where more than 3 people with disabilities live or receive services together.

Final rules issued by the CMS on Home and Community Based services and settings in January 2014 were modified from earlier versions to answer criticisms from many groups [See the Community Choice Coalition] and individuals who believe that there are many ways of living in a community. Congregate settings are not inherently discriminatory and do not violate the often misinterpreted 1999 Supreme Court Olmstead decision .

Even facilities that are explicitly defined as institutions (Intermediate Care Facilities for people with Intellectual and Developmental Disabilities,  nursing homes, mental hospitals, and other hospital settings) were not considered inherently discriminatory by the Supreme Court in the Olmstead decision when they are  necessary for people who cannot successfully live in community settings. Individuals may not be removed from institutional care to community care if they do not agree to it. 

The legal underpinning for the talking points on Apache ASL Trails is section 504 of the Rehabilitation Act of 1973: 

"No otherwise qualified individual with a disability in the United States, as defined in section 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any  program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency. . ."  29 U.S.C. 794 

HUD rules regarding housing discrimination do not justify disqualifying projects such as Apache ASL Trails:
  • 24 C.F.R. 8.4(b)(1)(iv) allows recipients of Federal funds to provide different or separate housing to individuals with handicaps, or to any class of individuals with handicaps, if such action is necessary to provide qualified individuals with handicaps with housing that is as effective as the housing that is provided to others. 
  • 24 C.F.R. 8.27 requires that accessible units be marketed to individuals who need the accessibility features of the units, and that the accessible units first be offered to individuals who need the accessibility features of the unit. 
  • 24 C.F.R. 8.22(c) allows HUD to approve a higher percentage of accessible units than the minimum percentages required by the regulations. This approval can be based on any available current data or evidence of a need for a higher percentage, and the regulations do not prohibit a property from making all of its units accessible to individuals with hearing or vision impairments.
According to the Talking Points:
  • HUD’s insistence upon an arbitrary 25% limit on the number of accessible units that can be rented to people with disabilities who need the accessible features has no basis in Section 504 or its implementing regulations and would in fact be a violation of 24 C.F.R. 8.27. 
  • Any quota, by definition, violates 24 C.F.R. 8.27 and discriminates against individuals with disabilities. The protections of federal disability rights laws are not first come, first served.
CMS and other federal agencies are also subject to Section 504 anti-discrimination rules, regardless of an agency's attempts to use anti-discrimination law to limit access to benefits and housing choices that the agencies and many advocacy groups would like to eliminate.

Saturday, August 9, 2014

Kentucky: Specialty medical clinic for people with DD

Wild Turkey
From the VOR weekly news update, August 8, 2014

Kentucky: A new wave of progress in healthcare is coming
This is from Exceptional Parent Magazine * August 2013 * by Matt Holder, MD, MBA, Chief Executive Officer of the Lee Specialty Clinic and the President of the Academy of Developmental Medicine and Dentistry


  On June 11, 2014, Governor Steven L. Beshear presided over the ribbon cutting ceremony for the Lee Specialty Clinic in Louisville, Kentucky.  While this ceremony celebrated the opening of just one clinic in one city in the United States, this single event marks one of the most significant developments in healthcare for individuals with intellectual and developmental disabilities in decades.

   The Lee Specialty Clinic focuses exclusively on people with intellectual and developmental disabilities. Its core services include primary care medical services, specialty medical services, dental services, psychiatric and behavioral services, physical therapy, occupational therapy, speech therapy, and crisis intervention services. These services are provided in an interdisciplinary fashion, whereby the professionals who provide them communicate with each other for the benefit of the patient. The Lee Specialty Clinic also serves as a teaching and research program where students from any healthcare discipline can learn, intensively, how to care for people with I/DD. Finally, and perhaps most important of all, the clinic model is reproducible. Its funding model has been approved at the federal level and its coordinated through the Medicaid system. This means that any state that desires to create such a model can do so.


    The creation of the Lee Specialty Clinic did not occur overnight. In fact, it took years of collaboration between doctors, families, advocates, self-advocates, policy makers and  governmental  professionals,  but  its existence stands as a testament to what can be achieved when all of these groups work together for the benefit of people with IDD. The  origin  of  the  Lee  Specialty  Clinic dates back  to  1999  when  a  dentist,  Dr. Henry  Hood,  a  family  advocate,  Louise Underwood and a state legislator, Representative Jimmie Lee worked diligently  to  create  a  pilot  dental  program.  After three years of advocacy, the Underwood and Lee Dental Clinic opened its doors to the public in 2002. At the time, it was estimated that the clinic might serve two or three hundred people with IDD from the Louisville metropolitan area.  By 2006, the clinic had received multiple awards for its innovative approach and quality outcomes and it was serving around 700 patients from over 30 counties in Kentucky. Some families drove five hours across the state just to come to the clinic.


Tuesday, August 5, 2014

Old News is Good News for Disability Housing Choices

I missed this story in January, but it is an important one. 

Remember the foofaraw in April of 2013 when the U.S. Department of Housing and Urban Development (HUD) decided that a housing project for deaf seniors in Arizona was discriminating against the non-deaf by allowing too many deaf people to live there? It even made the New York Times in an article entitled "A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination" by Fernanda Santos, 4/28/13. The project called  Apache ASL [American Sign Language] Trails is specifically designed to meet the needs of people who are deaf and use American Sign Language as their mode of communication.

These are excerpts from a press release from the Arizona Department of Housing dated 1/24/14: 


Tempe, Ariz. – Ending a two-year legal standoff over the award-winning Apache ASL Trails community, the U.S. Department of Housing and Urban Development (“HUD”) today announced that it has withdrawn its Letter of Findings and closed the investigation involving Apache ASL Trails. In a letter to Director Michael Trailor of the Arizona Department of Housing, HUD concluded that Section 504 does permit Apache ASL Trails to give priority in rental to those individuals who need the accessibility features of the units.

Today’s resolution comes with a promise from HUD that it will permit Apache ASL Trails to continue offering priority to applicants who need the unique accessibility features provided at the community.

Trailor, who has long championed the rights of deaf Arizonians to have full and equal opportunity to access the housing of their choice, applauded today’s resolution, saying, “All citizens have the right to be a vibrant part of their community, to choose where they want to live.”

After receiving approval from HUD in 2008 to build the low income apartment complex to provide accessible housing to individuals who were deaf, hard of hearing, and deaf-blind, the 75 unit apartment complex in Tempe, Ariz., called “Apache ASL Trails” opened its doors and quickly became a thriving, barrier free, and vibrant community. In June of 2011, Apache ASL Trails won the prestigious Charles Edson Tax Credit Excellence Award for Accessible Design. Days later, HUD issued a Letter of Findings that placed a cloud over the successful community, saying that too many deaf people lived at Apache ASL Trails. The State of Arizona, in support of Apache ASL Trails challenged the Letter of Findings and the two-year standoff began. In February of 2013, HUD issued a letter directing the City of Tempe to terminate the Section 8 vouchers that had been promised.....

Perhaps more important than the physical features is the embracing of culture and language that allows residents to communicate in American Sign Language with the manager, their neighbors and with the hairdresser, doctor, and other service providers who have offices on the first floor. Hearing residents are provided interpreters so that they too can participate in the active social life at Apache ASL Trails. The motto of this wonderful and accessible housing is “Banish Extreme Loneliness.”.......

This resolution comes as a great relief to the residents, who have eloquently asserted their rights to be a part of their community and to have housing that is both safe and barrier free....

Excerpts from the letter to HUD from the National Association of the Deaf, 4/25/13 

Section 504 of the Rehabilitation Act of 1973
(29 U.S.C. § 701)

"No otherwise qualified individual with a disability in the United States,... shall, solely by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service. The head of each such agency shall promulgate such regulations as may be necessary to carry out the amendments to this section made by the Rehabilitation, Comprehensive Services, and Development Disabilities Act of 1978..."

Friday, August 1, 2014

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"

Thursday, July 31, 2014

Adults with autism: "Going over the cliff" into adulthood with tragic results

JaLynn Prince from the Madison House Autism Foundation 

The phrase, "going over the cliff",  has become a standard description of what happens to far too many adults with autism who no longer qualify for educational services and are left with not much to do and nowhere to go. When the autism diagnosis includes intellectual disabilities, severe behavioral problems, and a need for constant care and supervision, family members are forced to adjust to an even more difficult situation than when their children were in school. Parents especially may feel a desperation that makes them wonder if this is a job they can ever retire from and what will happen when they can't do it anymore?

The Washington Post first reported a crime story on July 21, 2014, "Rockville, Md., couple charged with abusing twin 22-year-old autistic sons" by Dan Morse. Police came to the house with a search warrant on an unrelated matter and found the twins, locked in "a basement room with no furniture, no working lights and a single comforter on a bare tile floor."  The men's parents locked the twins into the room at night and had removed furniture because it was soiled. The room was locked from the outside and smelled of urine. This led to further investigation and charges of abuse and false imprisonment brought against the parents.

The crime report set off a more general discussion about the lack of services for autistic adults and the difficulty in caring for people with the most severe and complex forms of autism. The Washington Post published another article on 7/26/14, "Coping with adult children’s autism, parents may face ‘least bad’ decisions" by Dan Morse. The article included a story, not about abuse and neglect, but about another autistic young man whose parents appear to be exceptionally resourceful in figuring out how to keep him safe while living in the family home. Nevertheless, they have had to make considerable sacrifices to take care of him and still face situations that even they are not prepared for:

"...As [John's father] speaks, his 18-year-old son John starts to pace and moan in the kitchen. John typically won’t sit down for dinner until he and his parents are around the table, holding hands, his father saying the blessing. Mark walks toward the kitchen, past the locked front door, the locked door to the garage, the locked door to the basement. Those barriers, along with a tracking device John wears, the burglar alarm and the fence around the house, are designed to keep him from wandering off.

"But sometimes, even that isn’t enough. Three years ago, wearing green pajamas, John made his way to a Metro train platform four miles away just before a train came barreling into the station.

"For parents like the Bucknams, their children’s transition to adulthood is filled with gut-wrenching choices and challenges. The assistance connected with high school programs goes away. The best adult services often are at the end of long waiting lists. The pressures mount for parents to prepare for life after they’re gone…."

Later in the article a quote from Mr. Bucknam appears that is apparently the inspiration for the title of the article:

“'We can’t condone their choices,' says Mark Bucknam… 'But it’s possible that, in their minds, this was the least bad way to deal with this,' Bucknam says."

This set off a reaction from a number of disability advocacy groups condemning the paper for, in their view, offering an excuse for, rather than condemnation of, abusive treatment of people with disabilities by their parents or other caregivers. I don't see it that way, but more about that later.