Idaho Council on Developmental Disabilities executive director Christine Pisani spoke with Idaho Public Television’s Idaho Reports in November 2022. (Courtesy of Idaho Reports)
Maria Juarez knew her son would eventually need help from caregivers other than herself. She knew she would have to expose him to adults outside of her family.
Brandon Juarez has Down Syndrome and is unable to speak.
When a day came that Maria learned of his abuse, the Nampa mother remembers asking her son for forgiveness when she couldn’t find the answers he needed or communicate with people about the abuse he had endured.
She spoke to Idaho Reports in November, through a Spanish interpreter, about the need to improve the way Idahoans report abuse and neglect in vulnerable adults.
Juarez is a member of the Idaho Council on Developmental Disabilities and advocates for families like hers.
In May, a Boise State University study published in partnership with the Council and DisAbility Rights Idaho outlined the victimization that occurs among people with disabilities. It’s the first of three reports, and the survey focused on the experiences of professional stakeholders working with disabled people and those in victim services.
One in four Idahoans, or roughly 369,000 people, live with a disability. In Idaho, mobility and cognitive disabilities are the most common.
For those people, the rate of violent victimization is nearly four times higher than those without a disability, according to the recent report. Only about 38% of those violent victimizations will be reported, while the rate is closer to 45% for people without disabilities.
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Council executive director Christine Pisani said the report wasn’t entirely surprising to her. In 2007, she first learned of the problem’s magnitude.
“So it was my job at the Council to go around the state (at the time) and look for leadership among the developmental disability community,” Pisani said. “And I had the great opportunity to interview 108 individuals with intellectual and developmental disabilities from all over the state. … I was completely ill-equipped to hear the things that I heard, but of that 108 people that I interviewed, 82 voluntarily provided me with a number of incidents of abuse that they had experienced, many of which were multiple abuses throughout their lifetime.”
Many of those people didn’t feel like they had anyone to tell, and when they did tell someone, they often didn’t feel believed, she said. When some sought out counseling, counselors frequently said that their experiences didn’t really happen.
“And the saddest part I think that I left with from all of those interviews was a sense that people with intellectual and developmental disabilities felt like this is just the way it is,” Pisani said.
Maria Juarez’s son is now 21, living somewhere that is safe. But that hasn’t always been the case in Brandon’s life.
When he was 16, the agency that brought him home from occupational therapy told Maria Juarez he had some “little bruises” on him, but that he was fine.
But later, when the Juarez children were playing in the yard in the water, Maria Juarez took off her son’s shirt to play in the water. What she saw was not what the agency had described.
“I see that he has bruises all over his body, particularly around the ribs area, and in his back, as if he’d been dragged,” she told Idaho Reports through an interpreter. “His back was all blue. So I was like, ‘Oh my gosh, what they told me was something not serious,’ but I am looking at him and he was covered in bruises.”
Maria Juarez immediately told a social worker, then asked to speak with the therapist and someone in charge.
“I asked her what had happened, and she said ‘oh, what I did, uh, what we did with Brandon is to keep him safe for his well-being,’” Maria Juarez said. “And I was very angry and I asked, ‘Why do you say it was for his well-being if he has bruises and he seems like he’s being dragged and he’s being abused?’”
Maria Juarez said they kept telling her it was for Brandon’s well-being.
“I responded to them that that’s not what I do to keep him safe and for his well being,” she said. “That whenever he goes in a crisis, there are things that I do, but I never leave any bruises or drag him.”
She waited weeks for a response from the agency but never filed a report with police and didn’t file a lawsuit. Because Brandon is unable to speak, it made reporting the issue even harder. Maria didn’t want to make the issue about herself. She just wanted the abuse to stop.
“The main barrier for myself as a Latino woman is the language barrier. And it is a case also for others in the Latino community, but for people with disabilities in general the main barrier is not being heard, not being believed when they report,” she said. “In many cases, when there is a little bit of aggression involved (by a disabled person), people think that that gives them the right to abuse them and beat them. And that’s not right.”
Later, when Brandon was living at a supported living facility, he had a roommate who abused him. The facility didn’t immediately tell Maria, but an employee eventually did tell Maria and she was able to move her son to a different supported living facility.
She wants people to know that those with disabilities should be heard. Because Maria Juarez is concerned about retaliation, Idaho Reports is not naming the involved agencies and facilities. Idaho Reports did verify that authorities in the situation had been notified and are aware of the allegations.
“If we pretend like (disabled people) don’t exist, we enable (abusers),” she said. “If we don’t understand their needs, we are the ones who are unable to understand them because they are human beings and they are as a part of this world as anyone else.”
Pisani knows there isn’t a quick fix. But she hopes to make sure those with the power to create change are aware of the problem. She, along with leadership at DisAbility Rights Idaho, are trying to make that happen. DisAbility Rights Idaho is a private nonprofit that advocates for disabled people’s legal rights.
Stakeholders interviewed in the BSU study agreed that people with disabilities are more vulnerable to victimization from caregivers, staff, family members and people they come in contact with. They also agreed that coordination among entities involved in investigations could be better.
Fear was the primary barrier to reporting, according to the stakeholders, especially fear of getting their primary caregiver in trouble and the fear of not knowing what will happen if they do report.
A caregiver registry is one recommendation Pisani suggested. A registry would allow employers to see if a caregiver had a substantiated prior accusation of abuse or neglect against a patient. The Wisconsin Department of Health Services already maintains this type of public registry.
Pisani said under our current system, when abuse is suspected, the provider will just terminate the staff member. But, then that person can move on to the next place where there are vulnerable seniors or people with disabilities to prey upon.
Implementing a registry for employers in Idaho would require collaboration between state agencies and caregiver employers.
Rep. John Vander Woude, R-Nampa, is the new chair of the House Health and Welfare Committee. He told Idaho Reports that he’s seen the report.
“I read the report and went through their recommendations, and they don’t have any legislative recommendations at this point,” Vander Woude said. “I did talk to the person in charge there and they’re going to do two more studies yet through BSU before the final release. But I think some of the highlights in that report was there’s no tracking of somebody who is accused of taking advantage of somebody with disabilities.”
The lack of data and information around potential offenders was a concern for Vander Woude. The issue is close to Vander Woude, as he grew up with a sister who had Down Syndrome.
“I think that’s a valuable thing to say, ‘OK. But how do we track it? Who does it get reported to?’” he said. “So those are some of the things that when I read that report, I thought there wasn’t an absolute legislation (now), but there is a direction that we need to go so that we don’t victimize the people with disabilities.”
Barriers and education
There are a variety of barriers to documenting abuse outlined in the report, especially if the abusive person is the one who primarily communicates with the outside world on their behalf.
Pisani offered the example of children with disabilities being trained at a young age to comply with adults who are doing physical or occupational therapy. They aren’t always taught what sexuality is or what that kind of touching means.
“We don’t do a good job of providing education to children and adults about their own bodies,” Pisani said. “That they have autonomy over their body. We don’t teach them about how sexuality works, what healthy relationships look like, what boundaries look like, how to set boundaries. And many of our kids with developmental disabilities are often excluded from any sort of sexuality education training that is provided in the classroom.”
She hopes to improve that and encourages educating people with disabilities.
“We have to get better at providing accessible, understandable training in multiple languages; we have to start providing children age-appropriate education about their bodies so they understand their bodies. We have to do a better job of helping children to understand that they can say ‘no,’” Pisani said. “The more support a child or an adult needs, based on their disability, the more likely they are to be abused. So we have to give kids the skills that they need to be able to say ‘no,’ ask for help, (and) tell a trusted resource.”
The system being fragmented, or complicated, also creates barriers, according to the report. Some states, including Minnesota, have one number to call to report abuse and neglect, helping streamline the process. The Council supports the idea.
“Then it would be up to us to figure out ‘How do we have agencies work together to make this work for people with disabilities, instead of people with disabilities trying to figure out how to make it work for themselves?’” Pisani said.
Rep. Sue Chew, D-Boise, is starting 16th year on the House Health and Welfare Committee. She supports the Council’s plans to make a presentation to the committee, in part because the committee has many new members.
“The wisest thing new legislators are taught is if you don’t understand something, vote no,” Chew said.
Because of that, educating members about the subject is vital, she said.
“Not only do we want to make the system of reporting better, but how about a step back, and how do we improve the education for providers,” Chew said.
Chew also said she supports a caregiver registry to ensure disabled people are being helped by safe people.
Employment shortages and training for staff who care for disabled people is another issue the report honed in on.
Stakeholders explained that “serious understaffing has a direct impact on supervision provision and the ability to respond” to abuse, neglect and exploitation. Understaffing means current staff don’t have time to improve skills, clients and staff may not report abuse due to an inability to replace care workers that are fired, or accountability may be generally reduced because of staff shortages, according to the report.
Idaho’s Office of Performance Evaluations is working on a study regarding direct care workforce sustainability. That’s expected to be published in January through the Joint Legislative Oversight Committee.
The request for the study came from former Minority Leader Sen. Michelle Stennett in March of 2022, regarding direct support workers.
“They are highly underpaid, partly due to the Medicaid reimbursement rates. However, there are additional factors that contribute to the long-standing shortage of direct care workers that has been taking place well before the pandemic,” Stennett wrote in her request. “There is a deeply rooted undervaluing of the work, long hours, limited training, and often demanding nature of the work.”
Stennett asked for a study, potential solutions and recommendations for proposed legislation, policies, and strategies for the problem from OPE.
Pisani supports the study and agrees the shortage of staff could contribute to neglect, even unintentional neglect.
“The Council also feels very strongly that we need a whole lot more training to better equip our direct support workforce with the skills that they need to be able to be trauma-informed in providing services and support to individuals,” she said. “They need a whole cadre of training and ongoing training so that they can provide the best possible support to make the best possible day for people with intellectual and developmental disabilities.”
For more information on this issue, watch the Jan. 13, 2023, episode of Idaho Reports online at idahoptv.org.Victimization-Among-Persons-with-Disabilities_Professional-Stakeholder-Perspectives-in-Idaho-ACCESSIBLE-ENGLISH
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