Parents of adults with DD : Before I'm Gone

A short preview of parents of developmentally disabled adults discussing their fears for their children's future.

You can watch the full version and find more information at Parent Advocates for Neurodevelopmental Housing in San Francisco.

Federal Appeals Court rules that Illinois may close Murray Developmental Center

This is from the ARC’s newsletter Capitol Insider for the week of October 26th, 2015:

Rights/Long Term Services and Supports -- Court Rules That Illinois Can Close Murray Developmental Center: Citing a nation-wide trend to increase home and community based services (HCBS) for people with I/DD, the U.S. Court of Appeals for the Seventh Circuit recently ruled on the contested closure of Murray Developmental Center (Murray DC). The court held that Illinois could move forward with closing the facility. The ruling cited a growing number of studies that show that people with disabilities experience a higher quality of life in community-based settings as opposed to facility-based care. The ruling in its entirely may be viewed here.

Here is the rest of the story:

Despite the ruling by the U.S. Court of Appeals, the Rauner administration has already determined that Murray Center is not closing and all seven of the state’s developmental centers are in the 2016 budget, according to a report from WJBD News, 5/20/15.  Rita Winkler, President of the Murray Parents Association also reported in May that a new Director of Nursing was being hired for Murray and the process was underway to hire a new Assistant Director and Director of the facility.

While focusing on the relatively small number of residents living in developmental centers for people with intellectual disabilities, The ARC and other federally-funded disability rights advocates divert attention from the larger issue, the overall failure of Illinois to adequately serve people with DD. 

The Court decision of 10/15/15 includes these disturbing statistics: The State Developmental Centers have about 1800 residents, while roughly 10,000 people with severe developmental disabilities live in community-based facilities housing 1 to 8 individuals. The Illinois Department of Human Services provides services to approximately 25,000 people with DD. Another 23,000 are on a waiting list to receive services, of whom 6,000 are considered to be in emergency situations, yet do not receive even essential services from the State of Illinois. 

For all the talk about trends in delivering services in community settings, the huge waiting list and failure to provide even basic services to so many people with severe developmental disabilities is the real story that cannot be solved and may even be exacerbated by closing the state’s developmental centers.

Family awarded $3M in wrongful prosecution case involving facilitated communication

The Detroit Free Press reports that the family of an autistic girl won a $3M award in a Federal  lawsuit for wrongful prosecution against the Oakland County, Michigan, prosecutors office. The article, "Jury awards $3M to Wendrows in wrongful prosecution case" by Lori Brasier and John Wisely, summarizes the case that has drawn national attention because it involved the use of a widely discredited communication technique called "facilitated communication" as evidence of criminal wrongdoing by the parents of a severely disabled autistic girl.

Julian and Thal Wendrow of West Bloomfield, Michigan, were arrested in late 2007 after their 14-year-old daughter supposedly typed on a keyboard that her father raped her while her mother looked the other way. The daughter communicated through a facilitator, an aide at her school, who guided her hand over the keyboard, but she was otherwise unable to speak. The girl was later found in court to be unable to answer questions when the facilitator was our of earshot. This is consistent with court findings in other cases involving FC: "The typing, a controversial method known as 'facilitated communication,' had been widely debunked in the last two decades. Research always found it was the aide guiding the disabled person's hand, either consciously or unconsciously."

This did not stop the prosecutors, however: "Nevertheless, then Oakland County prosecutor David Gorcyca, his chief assistant, Deborah Carley, and assistant prosecutor Andrea Dean pressed on with the prosecution, even as news reports showed the method was unreliable."

In my opinion, the most egregious wrongdoing in the case involved the autistic girl's brother, who is also autistic but is much higher functioning than his sister: "Ian, who received the largest part of the jury award, was interrogated for two hours by West Bloomfield police who told him they had videotape of his father assaulting his sister. Police never had such a tape and the claim was a lie that a psychologist would later testify left the boy traumatized. Jurors did watch a video showing Ian's interrogation, in which the boy, then 13, doubled over in tears."

There was no physical evidence to support the rape charges. And, "the typed statements said the girl was coming forward because she feared going to hell for lying. But lawyers pointed out the Wendrows are Jewish and don't believe in the Christian concept of hell."

Defendants in the lawsuit were all from the Oakland County prosecutor's office: 

Former Prosecutor David Gorcyca who left office in 2008 was found to have "…defamed the family when he insisted months after he left office, and a year after the case was dropped, that the Wendrows were in fact guilty of abusing their daughter." He now works as a defense attorney.

Gorcyca's assistant Deborah Carley was found by the jury to have violated the constitutional rights of the autistic girl's brother. "Carley now heads the Children and Youth Services Division for the Michigan Attorney General's office," according to the article.

Assistant prosecutor Andrea Dean was also a defendant in the case.
 
Deborah Gordon, a Bloomfield Hills attorney, represented the family throughout the suit.

************************
More coverage of the trial by the Detroit Free Press:

"Wendrow lawsuit against ex-prosecutors to begin", 10/7/14  

"Lawsuit against ex-Oakland prosecutors gets under way", 10/8/14

"Attorney: Prosecutors ignored truth in charging couple", 10/9/14 

"Ex-prosecutor: Autistic girl was communicating in rape case", 10/14/14

"Former Oakland prosecutor defends actions in Wendrow case", 10/31/14

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.

Michigan Facilitated Communication lawsuit by parents may proceed

In November 2007, a man from Bloomfield Hills, Michigan, was accused of raping his 14-year-old autistic daughter based on statements that she allegedly made through facilitated communication. Facilitated communication is a controversial and largely discredited technique that supposedly allows a non-verbal person to communicate through a facilitator who assists the person in typing out messages on a keyboard. 

The man's wife was accused of knowing about the abuse but not doing anything about it. The girl's brother who has Asperger's Syndrome was questioned by the police without a lawyer or guardian present and was told by his interrogator that there was incriminating evidence that proved that the rapes had taken place and that implicated the brother in the abuse. The story told him by the police turned out to be entirely fabricated.

The man spent 80 days in jail, his wife was placed on an electronic tether, and both children were placed in foster care. The case was eventually dismissed; there was no physical evidence that a rape had ever occurred and the facilitator was shown to be the author of the allegations, not the autistic girl.  The parents sued the school district, the police, the prosecutors, and the Michigan Department of Human Services. The police settled the suit for $1.8 million, while the others involved claimed governmental immunity. 

According to a report in the Detroit Free Press, "West Bloomfield parents allowed to sue prosecutors over faulty sex-abuse case" by John Wisely, 8/29/13, an appeals court said "governmental immunity doesn’t shield Oakland County prosecutors, Walled Lake Consolidated Schools officials and staffers from the Michigan Department of Human Services from liability for their actions in the case." The parents' lawsuit claiming that their constitutional rights were violated may now proceed to trial.

The case was flawed from the start because of its reliance on evidence from Facilitated Communication. The Judge was especially critical of the prosecutors for allowing the girl's brother to be questioned: "'It was objectively unreasonable for Dean and Carley [the prosecutors] to subject (the brother) to an interview of this type without consent,' the court ruled."

The Court also found that Rebecca Robydek, a social worker with the state Department of Human Services who placed the children in foster care, could not claim governmental immunity. The court ruled that “Robydek’s actions are especially troubling in this situation given the multiple documented errors in the facilitated statement used as the sole basis for Robydek’s recommendation.”

Facility closures jeopardize rights of residents and families : Where are the advocates?

UPDATE: 7/15/13 The ARC of the United States has given Governor Pat Quinn The Advocacy Matters! award, acknowledging his leadership in closing state institutions and "rebalancing" the disability system. “This is a Governor that does things for the right reasons and is relentless in his determination to put people with disabilities before politics,” says Tony Paulauski [see below], executive director of The Arc of Illinois. “Governor Quinn’s vision in rebalancing the disability system is a model for the nation and one that all Illinoisans can be proud of.”

Many states are closing facilities for people with severe developmental and intellectual disabilities to the delight of deinstitutionalization advocates and to the dismay of the families of people who reside in these facilities. Families of residents, when asked, overwhelmingly support these specialized facilities for their very severely involved family members. For the most part, families are summarily dismissed by advocates as dinosaurs in a bright new age of inclusion and transformed systems of community care.

Having experienced "the community" for my sons with profound intellectual and developmental disabilities, and knowing other parents in the same situation, I can attest to the fact that living in "the community" does not automatically solve the problems that arise when living with a disability. The system of care is fragmented and people seeking help need to know what to ask for. The availability of services is often a well-kept secret from potential recipients. It can take years for families with the stamina for sustained struggle to cobble together the services needed for a safe and fulfilling life for for their loved one. Disruptions in services and the unavailability of residential options to meet changing needs are the norm, not an aberration. Needless to say, community care should be offered as a choice for people with disabilities, but it has a long way to go to fulfill its promise.

If we listen to families, we can better understand their resistance to community placements for their loved ones and their distrust of the promise of an improved life.

Dave Kassel, in The Real Choices in Care Blog, does listen to families and has catalogued their experiences with facility closures in Illinois and other states.  In Illinois families filed suit in February 2013 to stop the state from moving residents out of Murray Center in Centralia, IL, based partly on the state's record with closing another center in Jacksonville, IL, last year and on undue pressure applied to current residents of Murray Center.
 
"…The families alleged that the administration of Governor Pat Quinn had acted in such undue haste in moving some 30 residents out of the former Jacksonville Center in a matter of days in late 2012 that many residents were hospitalized or arrested, and parents’ rights were trampled….The Jacksonville closure process was touted by Governor Quinn as a 'milestone' in care for the developmentally disabled, but characterized by Murray Parents Association President Rita Winkeler as 'horrible.'"

More from Dave Kassel:

...The Murray parents’ complaint indicates that the transfers that subsequently began from the Murray Center resulted this past Memorial Day in a hospitalization and a near arrest in one case and the placement of a resident in a home under construction in another. 
  
Laurie Stengler, a member of the Murray parents group, told me that in one of the Memorial Day incidents, two residents of the Murray Center had been placed together in a group home against the advice of the Murray staff, who had noted that one of the residents consistently behaved aggressively toward the other.

'They did it anyway,' Stengler said, noting that there was just one staff member on duty at the group home when the aggressive resident pushed the other resident down and began kicking that person in the face.   The victim of the attack had to be taken to the hospital.

Other news sources have questioned the quality of care in community homes that Murray Center residents are being offered. This is from WILY radio in Centralia:

...[One home], despite passing an inspection, was found Tuesday to have multiple leaks in the roof, both over the 
bedrooms and the living room and kitchen area. Two former Murray residents moved into the home one week earlier. Both are female, one is in a wheelchair and the other uses a walker. Neither participate in a day program outside of the home.

It was then discovered Wednesday that an employee of the CILA [Community Integrated Living Arrangement] company was being charged in Marion County Court with felony abuse of a disabled person in his care, a charge that stemmed from an alleged incident while the worker was employed with another private care provider in Centralia.

On the handling of closures by the Quinn administration from Dave Kassel: 

...The federal court complaint also contends that the Quinn administration is trying to close all of the remaining developmental centers in Illinois because it is facing a $13 billion budget deficit.  At the same time, the administration made $1.6 billion in Medicaid cuts in June, which will further hamper the ability of the community system to provide the same services as the developmental centers.

According to one news account, even as the Murray Center was being readied for closure, corporate providers in Illinois were informed by the state in April that payments for residential and other services would be delayed by up to four months.  The state, meanwhile, owes those providers hundreds of millions of dollars in unpaid bills.

The ARC of Illinois has been a chief proponent of facility closures in the state. In an editorial that appeared in many Illinois newspapers, Tony Palauski, the Executive Director, offered families platitudes ("The rebalancing of the developmental disability system is a life-enhancing process that offers promise, freedom and opportunity for people with disabilities.") and euphemisms such as using the term "rebalancing", when "Robbing Peter to pay Paul" would be a more apt description of the process. Without addressing any of the concerns of the family group from Murray, he brushes them off with "…Murray is going to close, and stall tactics will only hurt the residents." 

Here is a response from Rita Winkeler from the Murray Parent's Association.

*******************************
The judge in the Murray Center lawsuit issued a restraining order against the state to discontinue moving residents out of the facility. A hearing will be held on July 23, 2013.  The federal complaint alleges violations of federal Americans with Disabilities Act and the Medicaid and Civil Rights laws.

Maryland: ICF/ID admission determination requires due process

(from the VOR web site)

The Maryland Court of Special Appeals, in 2006, found in favor of Appellant, Mary Reese, who, on behalf of Virginia Massa, appealed the denial of Virginia’s admission to Holly Center, a state-operated Medicaid Intermediate Care Facility for Persons with Intellectual Disabilities (ICF/ID).

The Court agreed that Virginia was denied procedural due process because the Statute only provided for a hearing if the Secretary approved admission; it did not require a hearing when an application for ICF/MR admission was denied. Because ICF/MR admission is a state benefit, applicants who may be eligible have an interest that cannot be taken away without due process. To the extent that the Statute does not provide for a hearing when admissions are denied, the statute is unconstitutional.  

 
The case is Mary L. Reese, Guardian v. Department of Health and Mental Hygiene (Md. Ct. Spec. App. 2006).

Sometimes the right place is an institution

This is an unusual story coming out of Maryland. Mary Reese, the stepmother and guardian of a woman with severe intellectual disabilities fought for years to obtain the care her stepdaughter needed in an institutional setting, an Intermediate Care Facility for persons with Intellectual disabilities (ICF/ID). By challenging the state's denial of admission to the facility, Mary also set a precedent in the Maryland Court of Special Appeals that ruled that the state's denial of a hearing after denying admission to the facility is unconstitutional.

******************************************

Holly Honeymoon: Victory is Christmas present for one family and hope for others
by VOR, January 31, 2013

After an eight year journey, Virginia (“Ginger”) Massa now calls Holly Center home. Families in similar situations across the country will appreciate what a monumental challenge it was for Ginger and her family to secure placement at Holly Center. As a Medicaid-licensed intermediate care facility for persons with intellectual disabilities (ICF/ID), becoming a permanent resident meant bucking a state and national trend.

Ginger’s good fortune is not lost on Mary Reese, Ginger’s stepmother and a VOR Board Member. As a national advocate, Reese knows all too well that Ginger’s struggle for the past eight years is one shared by thousands of individuals across the country.  She recognizes that her job as an advocate is not done.

“Our elation at Ginger’s placement at Holly Center is diminished by the knowledge that thousands of others are ‘stuck’ in community residential programs without consistent care and comprehensive services that are so necessary for their well-being.  I wish we could have done more to change this system which is so heartless and cruel in the name of individual rights and the subjective interpretation of least restrictive environment.”
 
Looking back and ahead

Ginger's long journey, while certainly peppered with significant hurdles along the way, is not without success that will benefit others.

One early legal victory was the 2006 decision by the Maryland Court of Special Appeals ruling which stated that Massa was denied due process when Maryland's Secretary of the Department of Health and Mental Hygiene refused to even hear her request for an ICF/ID placement. The controlling statute was found unconstitutional because it only provided a hearing when ICF/ID admission was approved. No such hearing right was offered when ICF/ID admission was denied. Ginger's fight changed state law which now requires appeal hearings in each case.

"Families still face an uphill battle, but at least now there must be a fair hearing," remarked Reese. "In our case, it reset the clock and gave us hope; before it was nothing more than the Director's whim, letterhead and signature."

Reese, who has long been involved in VOR and now serves on its Board of Directors, credits VOR for recognizing that a victory for Ginger would benefit Ginger’s peers throughout Maryland.

"VOR convinced the law firm Sidley Austin, LLP, that Ginger's cause was a case worth taking," said Reese. Thanks to VOR, we had access to outstanding legal representation and advocacy to carry this cause forward." Sidley Austin attorneys provided pro bono representation to Ginger and Mary for more than 6 years.

Ginger: At home at Holly

"I've been telling everyone it felt like Ginger and I were in the film 'The Wizard of Oz,'" says Reese. "Remember how the film begins in black and white and then at the yellow brick road everything turns to Technicolor? That's the best way I know to describe what a dramatic change Ginger has experienced moving from her inadequate and, at times, unsafe, community placement to Holly Center, a licensed ICF/ID."

“Her life and care has taken such a dramatic change, it is hard to believe we could have ever grown to tolerate for so long the poor care provided in her community home," she adds.

"We will not abandon those who are not as fortunate," says Reese.

"Our greatest hope is that Ginger's long journey paves the way for others in Maryland and even across the country."

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!

The House of Gort: a glimpse into the life of a Michigan family caring for two severely disabled daughters

The House of Gort from Steve Tatzmann on Vimeo.

"The House of Gort" is an exceptionally well-done documentary giving a glimpse into the life of the Gort family. Gwen, the first daughter of Tim and Gina Gort, was born with cerebral palsy. The second, the adorable Violet, has no disabilities. The third daughter, Eliza, was born healthy but suffered a cardiac arrest due to a medical error in the hospital. She has severe cerebral palsy as a result of the brain damage she suffered. [Gwen and Eliza are no less adorable than Violet, but they get starring roles in the video. Violet will have to settle for "best supporting actress" with extra accolades for being adorable.]

The video documents the constant care that the Gorts give their daughters and the consequences of medical errors. Their story was covered in the Grand Rapids News on 8/12/12 in an article by Sue Thoms - Parents sue DeVos Children's Hospital over newborn daughter's brain damage: 'They know they are wrong'.  It was also covered in a Grand Rapids TV news story on 8/12/12.

The Gort's have a blog where you can follow their story.