On a beautiful Sunday afternoon in late March, Chad McKinley is out for lunch with his older sister, Cheri Peterson.
McKinley is partial to Chipotle, where he asks for a little bit of everything in his bowl — but today he and Peterson are at a Tucson favorite, Truland Burgers & Greens, where McKinley’s just finished a spinach salad with apples and chicken, the same as Peterson. The two get together most every Sunday at a restaurant or Peterson’s home.
Peterson feels like she’s constantly trying to get her brother out of his own house, a modest, stuccoed town home in a quiet subdivision in northwest Tucson where he’s lived for several years with a roommate, another man with Down syndrome.
She’s not always successful — and lately, it’s gotten worse.
It’s not just because of the pandemic. Yes, the last two years have been made more difficult by COVID-19, Peterson says, but that only exacerbated challenges that already existed for her brother.
Chad McKinley has received many recognitions for his work with Tucson Toastmasters. He displays the ribbons in his room.
McKinley once had dreams of falling in love and getting married. He loved to cook. Sitting by his side on a Facetime call, Peterson mentions how much her brother enjoys dancing to country music. He nods, looking wistful.
Mostly, McKinley wants to talk about his birthday. He recalls the date, May 17, but struggles to remember his age. Peterson reminds him gently that he’ll be 48. With a round face, faint mustache and slight wrinkle between his brows, McKinley looks far younger in his baseball cap and tie-dyed T-shirt in shades of green.
But he’s fading.
Peterson worries that McKinley spends too much time in his bedroom on his computer, isolated from the world even as pandemic restrictions lift.
On this Sunday, she has additional concerns. In between picking McKinley up for breakfast, getting him to the restaurant and bringing him back home, Peterson has been texting her brother’s caregivers and their supervisors, in a dayslong quest to figure out why 11 pills are missing from McKinley’s supply of blood thinners.
The week before the blood pressure medication went missing, Peterson was focused on a sore on McKinley’s leg that wasn’t healing properly. Previously, Peterson learned that staff hadn’t changed the filter on McKinley’s CPAP machine for almost a year. Even after that was discovered and instructions clarified, it happened again. Peterson has noted missed medical appointments, a lack of attention to her brother’s high blood pressure and missing or inaccurate documentation of just about everything.
Peterson loves her younger brother, and she was happy to take over his care from their mother, who died in 2014. But keeping McKinley safe and fulfilled requires far more than Sunday lunches. It’s practically become a 24/7 job that has left Peterson unable to pay much attention to her own grown children. If she wasn’t focused on her brother, she thinks she might want to pick up her former job as a substitute teacher.
“I haven’t had a chance to think about what I’d like to do for a really long time,” she says.
Peterson spends a lot of time wondering what will happen to McKinley when she isn’t around anymore.
Before their mother died, McKinley lived on his own, in an apartment. He took public transportation all over Tucson, held down jobs and traveled to Washington, D.C., and Phoenix to lobby for the rights of other people with intellectual disabilities.
But in the last several years, McKinley’s world has gotten smaller.
The Arizona Daily Star has followed Chad McKinley and Cheri Peterson since summer 2021, interviewing them several times in person and on Zoom, exchanging emails and texts on a near-daily basis. Peterson, who is McKinley’s medical power of attorney, provided hundreds of pages of records that document the care provided to him by state contractors.
In those seven months, McKinley’s demeanor has gone from cheery and engaged to melancholy and forgetful.
Many people with Down syndrome develop early onset dementia, and Peterson has noticed memory challenges for a while now. McKinley also has congestive heart failure and diabetes. He’s struggled for years with depression. Still, Peterson insists, McKinley can have a good quality of life. Better than he has now. She believes substandard care and related stress has directly contributed to McKinley’s unhappiness.
For several weeks, McKinley has been talking about taking his life.
From a recent text message Peterson received from a caregiver:
“I asked Chad if he wanted to go into the garage and watch the rain he asked if there were any guns outside so he could kill himself … . I asked why he felt like that and he said, because of his diet. That he doesn’t get as much food as he wants.”
Her brother has made similar statements in the past, Peterson says, but it’s been many years.
“Basically, he’s overwhelmed, sad, lonely, feels like no one will help him with things he needs, and wants his stability back,” Peterson texted the Star in March. “The staff doesn’t talk to him, engage with him, or help hm. He feels alone in his own house with strangers. He doesn’t even get told their names when they come in.”
She doesn’t just worry about her brother.
“What happens to somebody who doesn’t have a sister who goes and spends their entire day doing that?” Peterson asks. “I don’t know. They go without it. And no one knows.”
Cheri Peterson gives her brother, Chad McKinley, a reassuring nudge on the head before leaving to pick up a few items.
A sister’s concerns
Chad McKinley is one of an estimated 45,000 Arizonans with intellectual and developmental disabilities who receive government services. Help can range from a support coordinator who offers advice to a spot in a group home, medical insurance and funding for daily activities. The group home model was developed largely in response to a 1999 U.S. Supreme Court decision that says people with intellectual and developmental disabilities should live in the least restrictive setting possible.
Citing federal privacy laws, the state of Arizona shares very few details regarding what life is really like for a person with intellectual disabilities who gets government services; pretty much the only way to know what is really going on is to rely on the word of residents and their family members. Documentation is hard to come by; Peterson and McKinley offer a rare, detailed glimpse of what life can be like for someone in his position.
Peterson reached out to the Star in the summer of 2021, frustrated by conditions in McKinley’s house and what she considered insufficient responses from the company contracted to provide his care, as well as the state’s Division of Developmental Disabilities. McKinley gave his consent for his sister to share documents about his care and medical condition, as well as permission to share his description of his feelings, including his thoughts about suicide.
Each individual’s experience is unique — and there are certainly Arizonans living their best lives in group homes — but Chad McKinley is not alone. Observers cite low pay for caregivers, limited training and a lack of oversight for poor conditions.
McKinley lives in a housing model called an “individually designed living arrangement,” or IDLA, which essentially means he is in a nonlicensed residence (in his case, it is a rented house).
In an IDLA setting, the Division of Developmental Disabilities holds DDD members (and their guardians/family) responsible for paying rent, utilities and any other bills, managing a lease and finding and getting along with roommates. Because the location is not licensed, it is not monitored by the state.
But the support staff hired by the agency that contracts with the state to provide care for people like McKinley are supposed to be monitored; they are required to document everything from medication to activities on a daily basis. If something goes wrong, that must be detailed in an “incident report.”
The IDLA model is designed to offer a person with intellectual and developmental disabilities (IDD) as much autonomy and freedom of choice as possible.
There’s no guarantee that any of it will work.
The danger with any living situation, experts say, comes when a person with IDD has limited or no contact with the community. This is likely to happen in a large institution, but it can occur in smaller settings, too. The group home model (IDLA or not) is designed to allow people with IDD to interact with their neighbors, find jobs in their community and make all kinds of outings from grocery shopping to seeing live music. This provides enrichment. And it’s an opportunity for community members to get to know a person with IDD rather than having that person’s only interaction be with paid caregivers and others with IDD, which can create an environment ripe for poor living conditions — and worse.
Tom Trebon, left, and Cheri Peterson check the food supply in the fridge where their siblings, Craig Trebon and Chad McKinley live as roommates. The Tucson Residence Foundation is contracted by Arizona Division of Developmental Disabilities to provide care to Chad and Craig.
Even as pandemic restrictions are lifted, McKinley’s seclusion continues, his sister says, as do conditions she’s complained about for years now.
Among the concerns Peterson has documented:
Medication irregularities, including missing blood thinner pills, extra antidepressants and one night of no medications dispensed at all.
Continuous failure to properly clean and maintain McKinley’s CPAP machine, resulting in two eight-month stints with no filter change and an infection.
Lack of treatment to an open wound on McKinley’s leg.
Concerns about mismanaged funds, missed doctor appointments and staff not engaging with McKinley or taking him out into the community.
Poor (or no) communication or documentation from McKinley’s direct support providers and management.
For example, Peterson says she has repeatedly asked that she be informed immediately any time her brother’s blood pressure is out of range. She’s also asked to be informed when his oxygen levels are unsafe and supplemental oxygen is given to McKinley. In a March 27 email, she wrote to state officials:
“If Chad’s blood pressure is out of the prescribed range, I am to be contacted immediately. If it is consistently out of range, the doctor is to be contacted immediately. If she cannot be reached, he should go to the ER immediately.”
In many instances, Peterson hasn’t been able to get any kind of documentation of significant events — despite efforts up and down the chain of command.
In early May, a DDD records manager emailed Peterson the following in response to her query about medication errors:
“The Incident Report you are seeking is not currently in Mr. McKinley’s file. I am not sure why it has not been submitted, and I cannot speculate as to why it has not been submitted, but I can tell you for sure it is not in his current DDD file. I have reached out to Mr. McKinley’s Support Coordination team multiple times to make sure his files are current and up-to-date, and yet the Incident Report you are seeking has still not appeared.”
Brett Bezio, spokesman for the Arizona Division of Developmental Disabilities, operated by the state’s Department of Economic Security, declined comment on Chad McKinley’s case.
“DES is unable to comment on individual cases due to privacy laws prohibiting the disclosure of our members’ health-care information.”
Generally speaking, Bezio wrote in an email to the Star, “The DES Division of Developmental Disabilities (DDD) is committed to ensuring the health and safety of its members, and the quality of their care. DDD’s process is to review all reported incidents and investigate those that are quality of care concerns through its Quality Management Unit. It also works with providers to correct identified issues. Members, guardians, service providers or a member of the community can report concerns or issues regarding DDD services, to the member’s Support Coordinator, supervisor, area or district manager. Concerns can also be reported directly to DDD Customer Service.”
Chad McKinley, who has Down syndrome, grabs a packet of markers to color a picture.
Chad McKinley spends a lot of time doing arts and crafts at home.
“That’s what I thought they were supposed to do,” Peterson says. “It’s what I think my brother deserves. But that’s not what’s happening. That’s not what’s happening at all.”
Meagan Kramer, a staff attorney at the Arizona Center for Disability Law in Phoenix, says her office hears often from families who have concerns similar to Peterson’s.
Low pay for direct service providers and high turnover contribute to many challenges people with developmental disabilities face, Kramer says, adding that getting the state to respond to concerns can be difficult.
She adds, “It’s difficult for folks to get someone on the phone and get it fixed.”
From advocate to recluse
For much of his adult life, Chad McKinley was a prominent advocate in Tucson’s Down syndrome community. As a board member with the Southern Arizona Network for Down Syndrome (SANDS), he participated in local events, such as the Buddy Walk, and traveled to Washington, D.C., to lobby members of Congress.
“He was at the forefront” of starting advocacy groups in Tucson, says Steve Freeman, the community relations liaison for the Arizona Developmental Disabilities Planning Council who previously worked with McKinley through SANDS.
McKinley was a founding member of People First of Arizona, another local disability advocacy group.
“They all knew Chad,” Freeman says.
Freeman accompanied McKinley to the Washington, D.C., Buddy Walk. While there, McKinley spoke to then-Rep. Martha McSally about rights for people with disabilities. Freeman described Chad as a strong advocate who had his own “things he wanted to talk about.”
McKinley recalls that he did all his own laundry, shopped by himself and rode the bus all over town, especially to the library. He also loved to cook.
“He was very independent,” Freeman says. “He was everywhere. If something was going on, Chad was there, all the time.”
And then he wasn’t.
After their mother’s death, Peterson, who took over as medical power of attorney, decided her brother needed more oversight. She says her mother expected McKinley to be independent, and sometimes those expectations were too high, particularly as he aged and his health began to falter.
About six years ago, McKinley moved into his current living situation.
The truth is, he does need greater care now. Along with his intellectual disability, McKinley is in stage 4 congestive heart failure. That condition was made worse after he contracted a severe respiratory illness in December 2019, which his family believes could have been COVID-19 before the pandemic had been fully realized.
To combat the lasting impact of the illness, McKinley’s doctor prescribed supplemental oxygen, eventually downgrading in April 2020 to a CPAP machine to be used overnight. That’s when McKinley really started to decline, Peterson recalls. And the level of care he received didn’t adjust to match his needs.
“He wasn’t able to do a lot of things that he’d been doing,” she says. “I think it started there, being told that he needed more help with things and maybe not having the staffing to do it, and then things started getting missed.”
Many months later, in January 2021, Peterson became aware that the CPAP machine’s filter, which should have been changed monthly, had yet to be changed.
A manager assured Peterson she had set it up with the CPAP supplier company that the required parts, including new filters and tubing, would be sent to the home monthly from then on.
But Peterson says the manager later admitted that the filter, face mask and tubing had not been changed since January 2021.
That means it was changed once — and not changed again for another eight months.
In April 2021, McKinley developed a sore beneath his nose. After Peterson took him to the doctor, it was revealed that the piece fitted around his nose had not been cleaned since it was prescribed a year earlier and likely resulted in that infection.
Chad McKinley on his computer at his home.
That summer, Peterson began documenting instances of missing doctor’s appointments, managerial deficiencies, staff shortcomings and failures to follow medical directives, among others.
For example:
A manager refused to commit to taking McKinley to a medical appointment when the assigned staff member couldn’t.
McKinley missed a different medical appointment because management failed to inform Peterson or his direct care providers it had been made.
In the first 18 days of March, Peterson saw McKinley’s blood pressure had been recorded outside of the doctor’s prescribed range 15 times, while another 15 times (at least) it was not recorded at all.
An incident report filed on July 8, 2021, documents that a staff manager missed a monthly ledgers meeting. The DDD report states: “team is concern SIC with missing funds and use of funds in a correct manner.”
McKinley was unable to attend church one Sunday — a long-scheduled and important event for him — because staff arrived late to transport him.
This spring, things have gone from bad to worse where potential health crises are concerned.
Along with 11 missing blood thinner pills noted in April, Peterson has spent weeks trying to track how four extra antidepressants were recorded on the medication count tracker. And in early May she learned of a potential third incident involving staff not providing McKinley his nighttime medications — including Colace, Simvastatin and Divalproex — one evening.
Weekly, doctor-directed medical trackers were consistently not submitted on time. And pill counts, meant to be completed daily, were not being documented properly, leading to the incident involving the 11 missing pills.
As a result, Peterson has asked Walgreens pharmacy staff to print a prescription report for each of McKinley’s medications as they are refilled, so she can compare that to staff counts.
In an email to state officials, Peterson wrote that “the medical trackers are missing multiple items, including entire shifts with nothing documented.” She also mentioned the trackers are still not being sent consistently to the parties that should be receiving them.
“I am sure you are all sick and tired of my emails informing you of these lapses in Chad’s medical care,” Peterson wrote. “Rest assured that I am also very tired of verifying, documenting and sending this information to people who do nothing about it.”
On the same day in a different email, Peterson expressed concerns that a wound on McKinley’s leg that appeared in late February had gone without the doctor-prescribed care, including being left uncovered or improperly wrapped. Care of the wound was discontinued after one week though it had not healed, and Peterson had not been notified, she wrote.
When she contacted DDD about the incident, she got no response, she says.
Two months later in late April, McKinley had two sores, the slow-healing original one and a new one. The staff is now following doctor directives, Peterson says.
“You’re fighting that fight every day, every day. And it’s just exhausting,” she adds. “And I’ve told DDD over and over again, because I feel like they’ve done nothing to support us in this. Nothing.”
In the days leading up to publication, McKinley had two incidents involving self-harm, likely because Peterson had to be away for a bit. She’s concerned by that, and frustrated that DDD has finally seemed to take notice of McKinley’s situation — and asked Peterson to resend materials she’s been sending for two years.
She says DDD is now holding weekly meetings to determine how to improve McKinley’s care; she was told this happened because she complained for so long. She hates that, doesn’t think the system should work that way.
After all this, the question has to be asked: Wouldn’t it be easier for Peterson to have McKinley come home with her to live?
“I have considered it, but cannot for many reasons,” she wrote in an email. “I have two sons that still come and go from our home. Chad would not have his own space here. We have two young dogs that are active and jump on him. He could easily get pushed down by them. We have a pool and right now behaviorally that’s is a danger to Chad.
“Chad currently needs 24-hour care and I don’t feel I can adequately provide that, try to get back to a career of my own after raising my own children, and enjoy my brother as a brother.”
A chat with Chad
On a spring morning, McKinley and Peterson sit on the back patio of his house. Birds chirp and wind chimes ring in the background, as Peterson talks to her brother about the story that will soon be published about him.
She explains what it means to be an advocate. Does McKinley know what that means? After a few false starts, he says, “Don’t use the r-word,” a message his sister says he’s been repeating for years.
McKinley says he is OK with people knowing that he has medical challenges, that he gets sad, that he has thought about taking his life. Is there anything else he wants them to know?
Throughout the conversation answers have come slowly — but not this one.
“I have a big heart.”
