Arizona made a revolutionary system to protect people with developmental disabilities. Now it’s falling apart.

Arizona’s Independent Oversight Committees helped it become one of the best places in the country for the care of people with developmental and intellectual disabilities. But now members say the state hasn’t provided necessary resources.

by Amy Silverman for Arizona Daily Star

Cynthia Elliott, left, takes a walk with her daughter, Zainab Edwards, in Mesa, Arizona, on Wednesday. Elliott was with an Independent Oversight Committee for three years and resigned last month out of frustration. Zainab is deaf, has autoimmune encephalitis and suffers from seizures. (Mamta Popat/Arizona Daily Star)
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This article was produced in partnership with Arizona Daily Star, which is a member of the ProPublica Local Reporting Network.

More than 40 years ago, Arizona set up a revolutionary system to protect the safety of residents with developmental disabilities like Down syndrome, autism and cerebral palsy.

The state created panels of volunteers — family members, nurses, disability advocates — in different regions to oversee the agency charged with the care of those with developmental disabilities.

The volunteers visited group homes, advocated for new programs and reviewed reports of possible abuse. They helped Arizona earn its reputation as one of the best states in the country for the care of people with developmental and intellectual disabilities.

But today, the Independent Oversight Committees are falling apart, with members accusing the state Division of Developmental Disabilities, or DDD, of neglecting to provide the information and resources they need to do their job, according to interviews, official documents and a review of confidential incident reports by the Arizona Daily Star and ProPublica.

Four committee members — including several long-serving leaders — have resigned during the past year. Several others interviewed by the news organizations report they are considering doing so. Some of the panels are barely functioning because not enough people show up for meetings.

Nearly all of the 20 committee members interviewed — a group that includes representatives from each of the state’s six regional committees — expressed frustration with the agency. They said that DDD officials do not regularly attend meetings to answer questions. Abuse reports arrive months or even years after the incidents occurred, preventing timely interventions. Suggestions for improvements are ignored.

The new findings follow an investigation by the news organizations this year that found that DDD was failing some of the state’s most vulnerable residents as a result of budget cuts, poor management and leadership turnover.

This fall, Cynthia McKinnon, a nurse who served for 30 years on the committee that covers the northern part of the state, turned in her resignation after her committee hadn’t received any incident reports in more than five months.

“The decades during which I worked advocating for medical care, for justice, for education, for inclusion, for HUMAN rights for a population with no voice and for group homes that assisted members to become independent are lost,” McKinnon wrote in her resignation letter. The independent oversight committees seem to be “an afterthought as the system has failed to provide the basic requirements to perform oversight.”

In response to detailed questions, DDD officials described their efforts to assist committee members. They said that reports are provided with redactions required by state law and that committee members can request visits to institutional sites if they disclose their intent to DDD officials before visiting.

The agency acknowledged that one committee in northern Arizona was not functioning because of a lack of members. The statement described how one DDD employee travels throughout the state to recruit members to the boards by providing flyers and brochures at schools and community groups.

“As with any group, finding qualified individuals willing to commit the time to the organization can be challenging,” the agency wrote.

The agency did not respond to specific questions about individual cases. In a statement, agency officials said the division treats people with developmental disabilities “with respect and the utmost care.”

“Our staff are truly committed to the individuals we serve, and we will continue to improve our programs to ensure all members receive the highest quality of care and assistance,” the statement read. “Member safety is our top priority, and we do our due diligence when an incident occurs to ensure members remain safe and comfortable while continuing to receive the care they need.”

“Spinning Our Wheels”

Arizona Virtual Event….

Join Us for an Event About Our Investigation Into Arizona’s Intellectual and Developmental Disability Services Hear from people featured in our investigation into services for people with developmental disabilities living in Arizona, at a free, virtual event on Dec. 16. The event will also feature people who were instrumental in making the project accessible.

…Wed. Dec. 16

The committee members’ most important job is also their most difficult: reviewing confidential incident reports that catalog the dangers faced by Arizonans with developmental disabilities.

DDD officials, workers at state-funded group homes, providers of in-home care and people who work with the disabled community are required to file reports about potential health and safety concerns involving people with developmental disabilities. Each year, tens of thousands of reports are generated, documenting everything from spats between roommates to bedbugs to sexual assaults and deaths.

The division can address problems raised in the reports by requiring more training, requesting the dismissal of health care company employees and threatening to rescind provider contracts. For the most serious incidents, the agency works with the state’s Adult Protective Services, which can investigate and recommend criminal prosecution.

The committees are designed to act as a safety net to make sure that state agencies are properly responding to complaints. Committee members are supposed to be independent of state control; each committee appoints its own members when slots open up.

It’s not unusual for a committee member to spend 10 hours a month reading hundreds of reports. Committee members are supposed to flag possible human rights violations and question the way the state conducts investigations and resolves complaints. But that task has become more difficult in recent years.

Karen Van Epps, the chair of an oversight committee that covers much of the Phoenix area. (Mamta Popat/The Arizona Daily Star) 

Committee members used to receive full copies of the reports. But in 2013, as a result of state and federal privacy rules, the division began to strip out details. Among other information, the division now withholds the names of individuals, their disabilities and the locations of the incidents.

So much information is redacted from reports that it is difficult to understand what actually happened, said Karen Van Epps, who chairs the oversight committee that covers much of metropolitan Phoenix. She said that DDD often ignores requests for additional details.

“It seems sometimes like we’re spinning our wheels,” she said.

Committee members from across the state said DDD was slow in delivering reports to them for review.

One recent report reviewed by the Star and ProPublica indicated that a woman living at home fractured her shoulder. Family members said they didn’t know how it happened. The case was closed. The committee received the report almost two years after the state learned of the incident, making it difficult to take action.

A different woman living in a group home showed up to a day program with a bruise under her eye. There was no explanation in the group home’s logbook as to how it happened. Committee members did not get an incident report until six months after the incident took place.

In other cases, committee members said that DDD ignored requests for additional information about incidents they had flagged for further review.

DDD delivered several incident reports to committee members this spring indicating that group home employees were being told to come to work with fevers — and not tested for COVID-19 — because facilities were short staffed.

The division did not respond to committee members who raised concerns over the incidents. At the bottom of one incident report provided by DDD to the committee, a member wrote, “Pushed back for more info. … It never came.”

Committee members said that DDD also does not appear to be addressing systemic problems.

In one recent case, a health aide working for a private company under contract with the state had sex with a person with a developmental disability. DDD determined it was consensual and no action was needed. The company later fired the person.

Bernadine Henderson, who sits on the committee serving western Arizona, said the incident reflected a broader pattern. The employee can now find a job with another company. It’s a common occurrence that the agency has failed to address.

“We’ve expressed a lot of concern about someone being fired from one agency and going to another,” she said.

DDD officials said they could not act against health care workers without a finding of wrongdoing by the courts or the state’s Adult Protective Services agency. They said responsibility rests with the health care provider.

“The new employer would need to perform their due diligence in background and reference checks before hiring to ensure members are served by the most qualified and caring employees.”

Diedra Freedman, a retired attorney and parent of a child with autism who heads the committee that covers the western part of the state, said the division was failing its responsibilities.

“When I look at these incident reports, [DDD is] not walking the talk. These people are not being treated like human beings,” she said.

The Beginnings

The committees arose as part of the settlement of a 1977 class-action lawsuit against the state that alleged horrific living conditions for residents of the Arizona Training Program, an institution on the outskirts of Coolidge, a town located between Phoenix and Tucson.

At the time, the Arizona Republic described the Coolidge facility, which then housed twice the number of people it was designed to hold, as “a wasteland.”

“The tumbledown buildings echoed with hostile shouts of pain and confusion. There were dressers without drawers, beds without blankets, sofas without cushions and restrooms without toilet paper. Residents were often drugged, locked in padded rooms or tied to their beds,” according to the newspaper.

Van Epps recalled being named to one of the original committees. At the time, she had just become co-guardian of her sister, Janie, who has Down syndrome. Janie is now 71 and living near Casa Grande with a family paid to provide her care. Van Epps is proud that her family never put her sister in an impersonal institution.

“That was one of the ways you could get a voice,” she said of what were then called Human Rights Committees. “I’d sort of been crabby about stuff and nobody listened to me.”

Oversight was initially focused on a few larger facilities, but as more people placed loved ones in smaller community settings, the focus turned to group homes all over the state.

In the beginning, Van Epps recalled, committee members were given ID tags and allowed to make site visits.

“One of the first things we’d do is pull the covers back to see if there were sheets on the bed. I can’t tell you how many times there weren’t,” she said. “We really did have a good idea of what was happening.”

The committees were given the undivided attention of leadership at DDD, Van Epps said.

“Compared to now we were awesome.”

In an interview, McKinnon recalled that committees in the early days often focused on health care, which wasn’t always available to people with developmental disabilities.

She urged DDD officials to offer specialized care for women. She advocated for bone density tests for people with developmental disabilities who use wheelchairs, rather than waiting “until their bones start breaking every time you move them.”

McKinnon said DDD officials used to routinely attend meetings to listen to the concerns of people with developmental disabilities.

“There was a time staff and [people with developmental disabilities served by DDD] attended the meetings so that members could express their thoughts about their lives, living situation and day programs.”

Over the past decade, budget cuts and leadership changes — there have been six directors of DDD in the past six years — weakened the power of the committees, according to both McKinnon and Van Epps.

Nancy Barto, a Republican legislator, has long supported the work of the oversight committees. She successfully shepherded a bill through the Legislature that attempted to insulate the committees from interference by moving them into another state agency.

“We have work to do to properly get that independent oversight throughout the state,” Barto said.


Elliott signs goodbye in American Sign Language to her daughter. (Mamta Popat/The Arizona Daily Star) 

Others have given up on the committees.

Since January, at least three committee members along with McKinnon have resigned, including Lynda Stites, who chaired the Tucson-based committee covering the southern portion of the state for several years.

Cynthia Elliott, who served on the committee serving eastern Arizona, quit this fall.

She had hoped that serving on the committee would give her insight into the care received by her daughter, Zainab Edwards, who is deaf, has autoimmune encephalitis and suffers from seizures. Instead, she just found the experience exasperating.

During her time on the committee, Elliott voiced concerns about a person living in a group home who was having significant behavior problems. She learned by reviewing the records that the person was deaf. The person was not being taught American Sign Language, nor did the person have access to an interpreter. Elliott’s committee reported it to DDD as a possible human rights violation. A year later, she had heard nothing back from the agency.

“It’s not what I thought it would be and it ended up not being in any way effective,” she said.

Several more committee members from different regions said they are considering resigning, placing more pressure on the struggling system. Since August 2018, some committees have had as many as eight monthly meetings canceled, usually because they did not have a quorum.

Committee members from across the state said their questions are often never answered.

“For all the hoopla about how invested we are in our vulnerable population, it’s a waste of time,” Elliott said.

“Damaged Beyond Repair”

Being part of the oversight system was personal for Ted Garland.

Garland, who lived in Flagstaff and worked at Northern Arizona University, had cerebral palsy. He served on the oversight committee for the northern part of Arizona off and on for about 10 years — having first learned of the committees after McKinnon helped him with a difficult living situation.

Garland loved social activities like belonging to Toastmasters International, a nonprofit that promotes public speaking skills. Membership on the oversight committee was a natural fit, but DDD didn’t make it easy for him.

Ted Garland (Courtesy of Mary Garland)

He had repeatedly expressed concern about accessibility issues, according to several members, and found it challenging to find a ride across town each month. He asked to attend the meetings virtually and, according to the minutes from the Nov. 21, 2019, meeting, “suggested a technology called Zoom.”

Dani Lawrence, a committee member who recently resigned, said she was upset when division staff appeared to not take Garland’s suggestion seriously.

“Staff scoffed at the idea stating it wasn’t secure technologically — although it’s now perfectly acceptable, in a pandemic, to have had nine months of virtual open public meetings,” Lawrence wrote in her resignation letter.

When the committee went ahead and voted for Garland to be co-chair, “the state liaison staff indicated the member was too disabled for the travel involved in state meetings and therefore couldn’t be the chair of the committee,” Lawrence wrote.

DDD did not respond to questions about Garland but said, “Recognizing how large some of the districts in Arizona are, [committee] members are able to participate in meetings virtually.”

Ultimately, it didn’t matter. Garland died unexpectedly of a heart attack 10 days later.

Lawrence was livid.

“The system of review is damaged beyond repair, which tells me as a committee member that maybe the state of AZ doesn’t actually want the outside review,” she wrote. “For me it’s made me feel like committee service is a farce, for optics only and a waste for families that needed the oversight for their loved ones.”


This article published by ProPublica on December 12, 2020, here

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