This System Is Imagined to Shield Individuals With Developmental Disabilities. It Is Falling Aside. — ProPublica

Many people in Arizona have developmental disabilities. These are sometimes called DD. DD includes:

• Down syndrome
• Autism
• Cerebral palsy
• And more.

Arizona has a system to protect people with DD. The state created it 40 years ago. Volunteers make sure people with DD are safe and healthy. The volunteers include:

• Family members
• Nurses
• Disability advocates.

These volunteers are called Independent Oversight Committees. Oversight means watching over something to make sure it is done the right way. In the past, they have:

• Visited group homes
• Helped make new programs
• Looked at reports about the safety and health of people with DD.

They helped make Arizona one of the best places to live as a person with DD. Today the Independent Oversight Committees are not doing well. Some members say they are not getting the things they need to do their job. They are supposed to work with the Division of Developmental Disabilities. It is sometimes called DDD. DDD is part of the state government.

We looked at reports and talked to committee members for this story. We also wrote stories about people with DD not getting enough help from DDD. You can read those stories here.

This year, 4 committee members quit. Others said they might leave too. In some places, not enough people show up to meetings to do any work.

Cynthia McKinnon is one of the people who quit this year. She is a nurse. She was on an Independent Oversight Committee for 30 years. She quit because DDD did not give her committee any reports for more than 5 months.

She wrote a letter when she quit. It said, “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.”

She wrote that her job seemed like “an afterthought as the system has failed to provide the basic requirements to perform oversight.”

We asked workers at DDD about the problems committee members had. They wrote a reply. They said they help the committees. They give them the reports. But they have to remove some info from the reports because of the law. They said committee members can visit some of the places where people with DD live if they tell DDD first.

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Workers at DDD said they knew one committee in Arizona wasn’t meeting. It did not have enough people. They said one of the workers at DDD travels around Arizona to try to find more people to join the committees.

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

DDD did not answer questions about any of the specific people it was asked about but it said it treats people with DD “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,” DDD said. “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”

The most important thing the committee does is look at reports about dangerous things that might hurt people with DD. These reports are confidential. That means the info in them is secret.

The reports talk about health and safety of people with DD. The people who write these reports are:

• Workers at DDD
• Workers at group homes
• Workers who help people with DD in their homes
• People who work with the disabled community.

There are tens of thousands of reports every year. They are about many things. Reports can be about:

• Roommates fighting
• Bedbugs
• Sexual assault
• Death
• And more.

DDD can make changes when they get reports. They can tell workers to get more training. They can ask businesses to fire workers. They can take away money. Sometimes the reports are serious. DDD can work with Adult Protective Services to see if it is a crime.

The Independent Oversight Committees ask DDD questions about the reports. They do not work for DDD and get to choose their own members. That is what independent means.

Reading the reports can take a long time. A committee member can spend 10 hours a month reading hundreds of reports. It is their job to point out Arizona could be fixing the problems in the reports. Doing their job is getting harder.

DDD takes some of the info out of the reports. They started doing this in 2013. The reports the committees read do not say:

• The name of the people involved
• What their disability is
• Where the event happened.

It is hard to know what happened without all the information. This is what Karen Van Epps said. Karen is the head of the committee in Phoenix. She also said DDD does not always give them more information when they ask for it.

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

Karen Van Epps is the chair of a committee in Phoenix.
(Mamta Popat/The Arizona Daily Star)

DDD said they have to take the info out of the reports. It is the law.

Committee members also said it takes a long time to get the reports from DDD.

We looked at some of the reports. One report was about a woman who broke her shoulder at home. Her family said it didn’t know what happened. It took 2 years for the committee to get the report. This was too long to do anything.

Another report was about a woman who lived in a group home. She had a bruise under her eye when she went to her day program. The group home didn’t say how it happened. The committee didn’t get that report until 6 months after it happened.

Sometimes, the committees asked for more info. DDD did not always answer.

This spring, DDD shared reports about group homes telling their workers to come to work sick. They said to not get tested for COVID-19 because there weren’t enough workers.

Committee members were worried about these reports. DDD did not answer their questions. One member wrote a note at the bottom of the report. The note said, “Pushed back for more info. … It never came.”

Committee members say DDD is not taking care of big problems. These problems impact many people.

Bernadine Henderson is a member of a committee. She lives in western Arizona. She gave an example of one of these big problems:

A health aide who worked for a private company had sex with a person with DD. DDD said they both wanted to have sex so there was no problem. The company fired the health aide.

But because DDD did not do anything, the health aide can get a job at another company.

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

DDD said they could not do anything unless the person had done something illegal. It is the business’s job to check the worker’s background.

It said, “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 runs a committee in western Arizona. She is a retired lawyer. Her child has autism. She thinks DDD is failing.

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

The Beginnings

The committees started in 1977. People with DD in Arizona were treated very badly back then.

Many people with DD used to live at the Arizona Training Program. It is an institution. An institution is a large place where many people live together. It is like a hospital or nursing home. It is in Coolidge, Arizona. That is between Phoenix and Tucson. In 1977, a newspaper named the Arizona Republic called the Arizona Training Program “a wasteland.”

Too many people lived there. The newspaper said: “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.”

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Some people sued because it was so bad there. That is why the Independent Oversight Committees exist now.

Karen Van Epps was a member of one of the first committees. Karen is co-guardian of her sister, Janie. Janie has Down syndrome. Janie is 71 now and lives near Casa Grande. She lives with a family who helps her. Karen is happy Janie never lived in a place like the Arizona Training Program.

Karen said the committees were important in the past. “That was one of the ways you could get a voice. I’d sort of been crabby about stuff and nobody listened to me.”

The committees used to focus on big places like institutions. Now more people with DD live in smaller places like group homes. The committees focus on the community now.

Karen remembers that the committee used to be able to go to the places where people with DD lived. They could see how they were being treated.

She said: “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. We really did have a good idea of what was happening.”

She said DDD used to listen to the committees more. “Compared to now we were awesome.”

Cynthia M. said the committees used to make sure people with DD got health care. Not everyone with DD could get health care in the past.

She told DDD to get special health care for women. One of the things she fought for was tests for people with DD in wheelchairs. These tests show how strong their bones are. She said people would just wait “until their bones start breaking every time you move them.”

Workers at DDD used to come to the committee meetings. People with DD and their staff came too. Cynthia M. said, “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.”

Cynthia M. and Karen think the committees don’t work as well now because DDD has less money. The leaders at DDD keep changing too. There have been 6 new directors in 6 years.

Nancy Barto is a lawmaker in Arizona. She is a Republican. She wants to pass a law to protect the committees. She wants to make it so they aren’t connected to DDD.

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

Resignations

Cynthia says goodbye to Zainab. They use sign language.
(Mamta Popat/The Arizona Daily Star)

Some people have given up on the committees.

This year 4 people quit committees. One of them was Lynda Stites. Lynda was in charge of the Tucson committee.

Cynthia Elliott also quit. She was on a committee in eastern Arizona.

She joined the committee for her daughter. Her daughter’s name is Zainab Edwards. Zainab is deaf and has seizures. Cynthia E. thought she would learn more about the care Zainab gets from working on the committee.

Cynthia E. was frustrated. She was concerned about a person in a group home. This person was having behavior problems. Cynthia E. learned that the person was deaf. But no one taught them sign language or gave them an interpreter. Cynthia E.’s committee thought this person’s rights were not respected.

DDD never responded.

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

Other committee members are thinking about quitting. This will make it even harder for the committees to work. Committees have to cancel meetings. They do not have enough people come.

Committee members say their questions don’t always get answered.

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

“Damaged Beyond Repair”

Ted Garland was part of an oversight committee. It was personal for him.

Ted had cerebral palsy. He lived in Flagstaff. He went to Northern Arizona University. He was on a committee for 10 years. He learned about it when Cynthia M. helped him with a hard living situation.

Ted loved social activities. He was part of Toastmasters International. It is a nonprofit that promotes public speaking skills.

It made sense for Ted to be on the committee. But DDD did not make it easy.

Ted Garland
(Courtesy of Mary Garland)

Ted was concerned that the committee was not accessible. He had a hard time finding a ride to meetings. He wanted to come to the meetings virtually. In 2019, he said he would like to join the meetings through Zoom.

Dani Lawrence was a member of the same committee. She said DDD did not want Ted to use the computer to join the meetings.

Dani quit the committee. In her letter she wrote: “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.”

The committee voted that Ted should be in charge of the meetings anyway. But Dani wrote that “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.”

This means that they thought Ted couldn’t be in charge because he couldn’t always get a ride.

DDD did not answer our questions about Ted. But they said, “Recognizing how large some of the districts in Arizona are, [committee] members are able to participate in meetings virtually.”

Ultimately, it did not matter. Ted died of a heart attack 10 days later.

Dani was very angry.

She wrote: “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. 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.”

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