Arizona is known as the best state in the nation for people with developmental challenges. But its Division of Developmental Disabilities has turned down thousands of people who seek assistance because of paperwork issues.

This article was produced in partnership with the Arizona Daily Star, which is a member of the ProPublica Local Reporting Network.

Illustrated section breaks by Margie Smeller/Make Studio for ProPublica.

Kyra Wade’s favorite color is pink. The 11-year-old likes road trips and the movie “Monsters, Inc.” She loves to watch people laugh. Her culinary preferences run to noodles and rice.

Beyond that, her parents don’t know much about her needs and wants.

Kyra is autistic and profoundly deaf. She was born premature at about 27 weeks, just a little over 2 pounds, which has impacted pretty much everything: eyesight, hearing, digestion, sleep patterns. A strong tremor in her hand makes it impossible for her to use American Sign Language. Her parents think she recognizes a couple dozen signs.

They know she’s frustrated. Kyra often smacks herself on the side of the head with her hand or bites her palm so hard she draws blood, said her mother, Ka Wade. The Wades assume she is doing it when she is in pain. Kyra is not potty trained, but she got her period recently. Ka couldn’t explain what was happening.

Listen to the Story

The Wades moved to Arizona in the summer of 2017 with the expectation that services provided by the state would help them care for Kyra. Arizona had long enjoyed a reputation as one of the best places in the country for people with developmental disabilities and their families. Thanks to a special Medicaid program created in 1988, Arizona had an innovative and generously funded system in place.

Arizona’s Division of Developmental Disabilities, or DDD, aimed to keep people with developmental disabilities at home with family, or in small group settings, rather than place them into institutions.

For many years, it worked. The division sent nurses, speech therapists and respite workers to assist families with the responsibilities of caring 24/7 for relatives with autism, cerebral palsy, epilepsy and intellectual disabilities. Care providers were well paid. There were no long waiting lists for help, as there were in other states.

But like many families in Arizona, the Wades discovered that the state’s vaunted system does not always deliver on its promises after years of budget cuts, poor management and leadership turnover.

Fewer than a third of the estimated 157,000 Arizonans with developmental disabilities receive any home and community-based services, and an even smaller number actually get access to therapies, day treatment programs, job training, housing and health care — elements designed to allow a person to live as independently as possible.

People who have applied for services describe an arduous and arbitrary qualifying process. One woman who relocated to Arizona with her adult daughter who has Down syndrome was told she had to prove that her daughter had developed her condition before she turned 18, even though the condition arises from a genetic difference that occurs at conception.

A first of its kind analysis of division data by the Arizona Daily Star and ProPublica shows the gulf between Arizona’s reputation and the reality faced by families seeking assistance for their loved ones.

The division said it is dedicated to assisting families navigate the system to get help. Specialists provide “coaching and consultation to families to assist them throughout the application process and gather required documentation,” DDD officials said.

Despite that commitment, about 4 of every 10 people who applied for assistance from DDD were rejected between September 2016 and March 2020, according to the data, which was obtained under Arizona’s public records law.

Almost half of those rejected were people who lacked sufficient documentation or submitted an incomplete application. The rest were mostly people who did not meet functional or medical criteria for inclusion into the system, while some withdrew or were denied for other reasons.

Even those people who gained acceptance into DDD’s program have found that the services provided could be limited. According to the division’s 2019 annual report, about 5,000 of the approximately 42,000 people who qualified for assistance ended up in Arizona’s most basic care program. Since budget cuts more than a decade ago, it provides no therapies or caregiving, only visits from a coordinator who is supposed to offer general advice and help connect people with developmental disabilities to community resources.

To get substantial services, such as home health care or expensive assistive devices, a person must also qualify for the state’s long-term Medicaid program. And again, there is no guarantee of receiving the help promised.

“The program on paper is phenomenal,” said Elaine Ellis, a developmental pediatrician who has practiced in Arizona for the last 15 years. “I have maybe two handfuls of families who have received that type of good quality of services out of, you know, thousands of families. Really.”

More than 75 people with developmental disabilities and family members from across the state were interviewed for this story. They described long battles to find caregivers, therapists and nurses, as well as struggles to get necessary equipment like communication devices. Some family members cannot work outside the home because they are caring for a loved one. Others have gone years without a break. Many are terrified that when they die, no one will look out for their disabled relative. Some said they have contemplated taking their own lives because of the stress.

There are the parents in Casa Grande who had to learn a scary, high-skill procedure for feeding their son because there was no nurse available for months at a time; the woman in Tucson who has barely left the house in four years because she can’t find care for her adult brother-in-law; the father in Buckeye who is on the phone with his daughter’s group home providers several times a day, on a good day; the parents in Mesa who have had to translate for their deaf daughter when there isn’t an American Sign Language interpreter; the Tucson mom who plugged in her daughter’s outdated communication device and watched smoke come out of it.

In a written response to questions, DDD acknowledged problems: “We know there are still access to care issues for some families, and we are working to continuously improve how we serve our members to ensure that all members receive quality services in a timely manner.”

The Arizona Daily Star and ProPublica are investigating services for people with intellectual and developmental disabilities. Here’s how people with disabilities, their families, friends, caregivers, teachers and medical providers can help.

But overall, the division said it was a “national leader in the delivery of services and supports to individuals with developmental disabilities.” The DDD written statement noted the state budget for the agency’s highest level of services was increased from $263.2 million in 2013 to $501.7 million in next year’s budget cycle.

The statement pointed to a survey, completed by clients selected by DDD supervisors, that found that 99% of those polled reported “overall” satisfaction with the help provided by the department. “The vast majority of members have not indicated issues obtaining services,” the division said.

“Our team of dedicated and compassionate public servants work each day to continuously improve DDD operations and accomplish our goals on behalf of those we serve,” the division said.

DDD officials declined to respond to questions about any individual cases.

Arizona’s promised land failed Kyra Wade. After the family’s arrival in Arizona, Kyra was almost immediately approved for services through the developmental disability agency. Ka was impressed at the menu of care offered by the state.

Then, in October 2017, Ka turned in paperwork to get Kyra approved for an augmentative communication device, a tablet that allows people with autism, cerebral palsy and other conditions that make communication difficult to express themselves.

Over the next two and a half years, the agency required the Wades to make numerous visits to doctors and speech therapists to win approval for the device, which can cost between $4,000 and $10,000 depending on specifications. Agency officials told Ka that they had misplaced her paperwork. Another time, Ka said, her application was rejected because DDD had given her outdated forms. In all, the Wades went through the application process four times.

By early 2020, Ka had given up on the state. Ka called Kyra’s insurance provider, which approved the purchase of the communication device in less than three weeks. More than seven months later, Kyra and her parents have not been trained on the device and recently Ka was told that she was given the wrong program. Now she’s trying to figure out how to address that, watching videos on YouTube and talking to experts.

“She’s already lost three years,” Ka said of her daughter.

This spring and summer, Kyra spent much of her time under a blanket on the living room couch, watching movies on her Kindle. Kyra doesn’t have the fine motor skills to operate the Kindle herself so when she finishes a movie, she brings it to Ka or her dad, Wyly, so they can put on another.

Ka and Wyly feel that Kyra is upset and depressed because of the changes in her body, as well as the change in her routine — like kids all over the world, she suddenly stopped going to school this spring. She’s back to school part time now and unlike other parents, the Wades can’t explain any of this to her. It might have been different if they’d had that communication device.

“We would hopefully have been able to tell her that it’s not the end of the world,” Ka said. “You don’t have to lay down like this.”

A Model Program

If Kyra Wade had been born just a couple generations ago, it’s likely that she would not have come home from the hospital with her parents, sent instead to live in an institution along with others with conditions like Down syndrome and cerebral palsy.

Society has never really known what to do with people with developmental disabilities. The Greek philosopher Aristotle wrote, “Let there be a law that no deformed child shall live,” and ancient Romans reportedly tossed disabled babies into the Tiber River. Institutions for people with disabilities emerged in the 19th century. They were often little more than warehouses, packed far beyond capacity, with abuses heaped upon their residents.

This continued into modern times — and Arizona was no exception.

Resources For People With Questions About Services for Arizonans With Developmental Disabilities:

• Arizona’s Division of Developmental Disabilities
• Arizona Developmental Disabilities Planning Council: A governor-appointed council comprised of self-advocates, family members, caregivers and others. The council staff provides information to the public about state and community resources, collects data and awards grants that serve the community of people with developmental disabilities.
• Arizona Center for Disability Law: A nonprofit public interest law firm that assists Arizonans with a wide range of disabilities.
• Raising Special Kids: A nonprofit that provides support and information to parents of individuals with a wide range of disabilities, ages 0 to 26.
• Arizona Center for Law in the Public Interest: A private, public interest law firm focused on government accountability and protecting the rights of Arizonans. Although it does not work solely on cases involving disability, the firm handles cases involving disability.

In the 1970s, one of the state’s institutions had “behavior treatment programs” with innocuous sounding names like “oral hygiene,” recalled Ron Barber, a former director of Arizona’s services for people with developmental disabilities. Staff would discourage a person from chewing on a foreign object by forcing them to hold a coarse rag dipped in a bad-tasting substance in their mouth. If you peed on the floor, Barber said, “you would be given a rag and you’d have to clean it up, clean it up, clean it up, endlessly over, over, over.”

Barber and others in the state embraced an emerging concept in which people with intellectual disabilities were treated as “normally” as possible. By the 1980s, long before it was considered the standard of care, Arizona began a program designed to keep people with developmental disabilities out of institutions and make them a meaningful part of the community.

The state’s plan was both altruistic and practical, meant to enhance quality of life and save money. For many years it did both, helping families care for loved ones at home and supporting individuals living in small residential settings.

By 1988, Arizona had managed to convince the federal government to pitch in. For every dollar the state paid out to keep people with developmental disabilities at home or in small group settings, the Medicaid program would contribute $2 in additional funding.

Arizona’s pioneering concept was cemented into law a decade later, when the U.S. Supreme Court ruled in 1999 in Olmstead v. L.C. that public agencies must provide community-based services to people with disabilities whenever possible.

The term “developmental disabilities” applies to a host of conditions including cerebral palsy, epilepsy, autism, genetic differences like Down syndrome and dozens of less common diagnoses.

Just as with anyone, the abilities, wants and needs of people with developmental disabilities differ greatly from person to person and the goal of the federal laws around home and community-based services is to recognize each person as an individual and tailor care and services to their particular requirements.

It was not easy to convince state and federal leaders to go along with Arizona’s then-revolutionary plan, recalled Len Kirschner. He served as the second director of the state’s Medicaid program, known as the Arizona Health Care Cost Containment System, or AHCCCS.

“They did not like home and community-based services because they said that’s what people want and if you give them that you’ll get more people and that will cost us more money,” Kirschner said.

True, Kirschner told them, but such services are far less expensive than institutions. His view prevailed, and Arizona became known across the country as a haven for those with developmental disabilities.

“I was having people come here from all over the country to look at our system,” Kirschner said. “We’d get calls from every state.”

Today, fewer than 200 Arizonans with developmental disabilities live in institutional settings. In 2017, the state had the highest percentage of people with developmental disabilities living at home, according to data released this summer by State of the States, a federally funded program. Each year for more than a decade, Arizona won top ratings in the country in a study conducted by United Cerebral Palsy, a national advocacy group.

The Breakdown

The state’s reputation suffered a major blow in 2018, when a woman living at Hacienda, a government-regulated institution in Phoenix, gave birth to a full-term baby boy on New Year’s Eve. Weeks later, a nurse was arrested and charged with sexual assault. The police said this likely was not the first time the woman — a then-29-year-old with a seizure disorder, unable to walk, talk or care for herself — had been pregnant. She had lived at Hacienda since she was 3.

The incident led to scrutiny by a governor’s task force and a legislative oversight committee — and it drove home the value of living in the community, rather than locked in an institution. A number of reforms were making their way through the Arizona Legislature in early 2020, derailed when COVID-19 suddenly ended the session.

To disability advocates, the Hacienda incident was the culmination of years of growing problems at DDD, the developmental disability agency.

The decline began in 2009, when the state slashed spending in the middle of the Great Recession, eliminating almost all support for the state’s basic program. It also cut by 15% the reimbursement rate for help like nursing and respite care.

Wages for workers remain low, according to a study commissioned by the department in 2019. Researchers found that an additional $100 million to $150 million was needed to bring pay up to national standards.

Advocates say low pay for caregivers has caused many to leave for other jobs.

Nicole Martinez worked at a day program for people with disabilities in Tucson, providing rehabilitation services and respite care for family members who need a temporary break from caretaking duties. She didn’t want to leave, but she couldn’t make ends meet on a $12 an hour minimum wage salary.

She found a position as a teaching assistant at a private school for children with autism that paid almost $16 an hour.

She misses the clients that she worked with, although she said the job was hard.

“Their lives are literally in your hands,” Martinez said. “I wanted to stay there. I cried so much when I had to leave. It hurts your heart.”

Turnover, among everyday employees and senior leadership, has also been high in recent years.

In February, according to the division’s data, more than 68% of DDD’s support coordinators had a higher caseload than they should. Turnover was close to 20% for much of the last year.

Employee vacancies have meant that waiting times remain high. In many other states, people who qualify for services are put on waiting lists; Arizona has long bragged that the state has no such lists. But people still wait for services. In February, according to DDD, more than half of new members did not receive authorized services within the 30 days required by AHCCCS, the state’s Medicaid program. People interviewed for this story said that in some cases they waited years.

Senior leadership churn has also been high. Since 2015, DDD’s parent agency, the Department of Economic Security, has had two interim and three permanent directors, including one who was fired after he dismissed hundreds of employees for “bullying” and stockpiled weapons in the agency’s basement. During that same period, DDD has had six directors.

State Sen. Nancy Barto, a Republican who has followed issues involving services for people with developmental disabilities for many years, said turnover has contributed to the division’s poor performance.

“I think we lost a lot of time,” she said, “by having a lot of turnover and not really focusing on this agency and how accountable it has not been.”

AHCCCS, which contracts with DDD to deliver services, has found problems with the state agency’s performance for years.

In 2017, the agency criticized the division for long wait times for services.

The following year, the agency hammered DDD for failing to investigate 27,000 reports of possible wrongdoing at private homes and community settings, ranging from nonserious incidents to cases of potential sexual and physical abuse. There were about 5,000 reports on medication errors that had not been investigated.

In March, AHCCCS — pronounced “Access” — called on the division to fix delays in issuing augmentative communication devices for people like Kyra Wade.

In its response to questions for this story, DDD officials wrote that the agency’s leaders had tackled many of the problems. The 27,000 incident reports have all been investigated and resolved, they said. Approval for augmentative communication devices has resumed. And the division is focused on bringing down wait times.

“No member or family should have to experience a long wait time to find caregivers, therapists and nurses,” DDD officials wrote.

But getting help remains difficult. A 2019 report prepared for the division by Raising Special Kids, a nonprofit that counsels families with children with disabilities, found consistent complaints about a lack of caregivers and high turnover among support coordinators, as well as support coordinators’ lack of knowledge of available resources. The report was based on comments from more than 500 families at forums held across the state.

Arizonans who participated in the survey “reported wanting more information, and transparency, from the Division of Developmental Disabilities,” the report said.

The Eligibility Game

Carol Cox moved to Arizona in 2019. She bought a home in Gilbert and applied for services for her daughter, Janine, who is 41 and has Down syndrome.

Carol didn’t anticipate any difficulties. Down syndrome is a well-known developmental disability, and Janine was born with a heart defect often associated with the genetic condition. Carol had never had any trouble getting her services in Washington state, where they’d lived.

Janine had received job training in Washington, working part-time jobs at Lowes and Target and competing in Special Olympics swimming and other sports. In recent years, Carol said, Janine has developed some behavior issues; her mother was eager to find her a day program where she could work on social skills.

But when a DDD employee looked at Janine’s school and medical records, she told Carol that she needed more documentation — she’d have to produce a psychologist’s report demonstrating Janine’s current level of need. Janine’s application was denied.

Carol found a psychologist, who tested Janine for six hours over two months and determined that she did, in fact, qualify for services. Armed with the report, Carol headed back to the DDD office and sat down with a different employee.

“She says, ‘Let me look,’ says, ‘Oh no, this is way too current. We can’t use this, we need something from before she was 18,’” Carol recalled.

The irony was not lost on Carol.

“I said, ‘She has Down syndrome,’” Carol responded. The employee told her she needed more records.

Carol pulled Janine’s school and medical records again. This time, Janine qualified.

The haphazard nature of Carol and Janine Cox’s experience appears to be a hallmark of the DDD eligibility experience. And it has given rise to an entire industry designed to improve a family’s access to care — so long as it can afford it.

To qualify in Arizona, applicants must demonstrate that they have at least one of four diagnoses: epilepsy, cerebral palsy, autism or intellectual disability. The condition must have manifested before the age of 18, and applicants must demonstrate that they are not functional in three of seven categories, such as self-care, communication skills and mobility.

An examiner with the department must then review each case to determine whether a person will gain access to Arizona’s services. There are two tiers of services. A person who cannot function without extensive help is placed into Arizona’s Medicaid program, which provides a full menu of care. A person whose needs are less severe — as determined by an examiner — will have access to a case manager and little else.

Examiners also reevaluate a person over the course of their lives. Children are reexamined at age 6 and again at age 18 to determine whether they still qualify.

The system is so complex that many families resort to hiring doctors, lawyers — or both.

“Where there’s financial means, one thing I will do is engage an appropriate medical professional, typically a neuropsychologist when it comes to autism or the intellectual disability, who understands the system and knows what we need to accomplish,” said Bridget Swartz, an attorney based in Phoenix. “And we present the documentation to that individual, they conduct their interviews and assessment of that person and then they craft a report with our guidance that we can deliver to DDD. That’s a several thousand dollar endeavor.”

In addition, Swartz said, she works with clients to make sure they know how to answer questions, particularly during the functional assessment that determines just what the individual is capable of.

Arizona’s treatment of people with developmental disabilities is important because it impacts tens of thousands of people. But for us, it’s also personal.

For instance, an examiner may ask whether an individual with a developmental disability is able to turn on the shower. While the brief answer may be yes, the question itself does not capture all the steps that come before and after.

The better question, Swartz said, is does the individual need prompting to go into the bathroom, turn on the water, wash themselves, turn off the water and dry off?

“But the interviewer won’t get to that,” she said. “So what we do is coach the family so that they don’t neglect to talk about what it takes to get to that point of turning on the shower.”

Sydney Rice, a developmental pediatrician and professor at the University of Arizona medical school in Tucson, said that language can be a barrier. Rice holds clinics in Douglas, along the Mexican border. She’s seen families struggle to communicate with state reviewers who don’t speak Spanish.

Rice said she’s seen patients refused for services when she was sure they’d qualify, and she has seen the reverse, where a patient she didn’t think would qualify did.

Recent court cases have demonstrated the difficulty of gaining admission to Arizona’s program. Four cases argued before the state court of appeals all found in favor of people with developmental disabilities who had been turned down for help. All were subsequently provided or reinstated access to department resources.

One case involved Jaden Ruiz, a brawny, brown-haired boy who lives with his parents, Ivan and Maria, in Avondale.

Maria explained that Jaden was a typical baby, but at 18 months, he suddenly stopped speaking and began isolating himself. He loved to chase cars.

“He couldn’t comprehend danger,” said Maria, speaking through a Spanish-language interpreter. “And so it was like the most exhausting thing to keep him safe.”

When Jaden was 3 1/2 years old, a local pediatric neurologist diagnosed him with autism. DDD accepted him into the system, and he began to receive help in the form of behavior coaching and speech therapy.

When Jaden was 6, the state decided he no longer deserved assistance, even though he had already been diagnosed with autism.

In early October, the appellate court ruled that the division had violated its own regulations in denying Jaden help. It ordered the division to provide services to Jaden and his family again.

“We felt blessed,” Ivan said, “that finally justice was served to our favor because we knew that it was unjustified to begin with.”

The Basic Program

Cassie Camacho knows she has an intellectual disability, a term she pronounced with difficulty on a recent Zoom call, but beyond that she’s not so sure.

She described herself as “high functioning” and said she was always in special education classes in elementary and high school. Cassie, 29, is her own guardian, although she still lives at home; her father, Eddie, said she cannot live independently. Since 2014, she has taken one community college class each semester, with the goal of graduating with her associate’s degree. Her Facebook page shows photos of Cassie giving the thumbs up in various settings, mostly Special Olympics competitions.

Cassie made it through one of the state’s hoops: She qualified to receive services from DDD’s most basic program. About 5,000 Arizonans fall into this category. Before the Great Recession in 2009, if you qualified for DDD’s basic program, but not for Medicaid, you’d still get services, paid for by the state. That ended with budget cuts that were never restored. Cassie has applied for Medicaid long term services — three or four times, her father said — but was rejected every time.

That leaves her with not much help. Cassie said she’d like to learn how to manage money and maybe how to cook. She would like to be in her own place with other people with intellectual disabilities — people like her, she said.

Her father retired recently from the city of Mesa, and “I think maybe he might want to have little breaks sometimes, too,” she said, adding, “I know my parents aren’t going to be around forever.”

Other people assigned to DDD’s basic program and their families described challenges similar to Cassie Camacho’s. More than one parent said they have told the support coordinators to stop coming because they consider them powerless.

Eric Nunn, 29, has red hair, a shy smile and big muscles from working out and hauling materials at his part-time job at a print shop. He also has Down syndrome. If Eric had three wishes, he’d use them all to ask for the same thing: friends.

When Eric is not working, he’s usually at home, swapping weeks between his divorced parents — mom in Scottsdale, dad in Mesa. Eric’s mother, Terri Myers, is 61. She works in IT. His dad, 71, is a physician assistant. With Eric’s Social Security benefits and salary from his print shop job, his parents help him make ends meet, but there’s not much left for extras.

Some people with developmental disabilities attend day programs where they socialize and practice life skills like cooking. Terri said she wishes she could send Eric to a day program, where he could make friends, but the out of pocket cost is $88 a day, plus a transportation fee of $12.50 each way. Eric performs with Detour, a theater troupe in Scottsdale, but rehearsals aren’t enough to keep him busy.

Terri would like to see Eric live on his own with roommates. She thinks he could do it with some support (his parents never leave Eric alone overnight), and she worries about what will happen to him when she and her ex are no longer able to care for him. They can’t afford to set up a third household with caregivers to staff it.

“Wouldn’t it be lovely if there was actually some place for him to live?” Terri asked.

Eric has qualified for DDD — but not for long term care. Terri has gone through the application process three times.

The last time Eric was rejected, Terri recalled, the eligibility specialist told her Eric doesn’t need assistance because he has parents to take care of him.

And what happens when those parents aren’t around anymore?

“They said, ‘When you die, he’ll qualify,’” Terri recalled.

No Service

Even those who get into Arizona’s Medicaid program can have difficulty actually obtaining the services promised.

The Lundergan family knows this well.

At 33, Mike Lundergan still lives with his parents, who have retrofitted a floor of their home in west Tucson to meet his needs.

Born at 25 weeks, at a time when it was rare for an infant born so prematurely to survive, Mike has cerebral palsy and other conditions that limit the use of his left side, impacting his sight, hearing and cognitive abilities. He wears hearing aids and takes medication to lower his blood pressure and control seizures. During the day, portable medical equipment allows him to move around the house on his own and take short excursions outdoors. Lately, because of COVID-19, trips have been limited to car rides. At night, the ventilator pumps air to his lungs.

Mike loves music. He’s got a set of drumsticks, which he brings along when he goes out to see local bands, like the Bryan Dean Trio. On a warm Saturday afternoon in late spring, his mother, Darlene Jones Lundergan, hands Mike his drumsticks for an impromptu jam session during a FaceTime interview. The guy’s got rhythm, banging in time to “Blackbird” by The Beatles. He’s slight, with thick glasses and sandy hair that’s receding, shirtless because he gets overheated easily, his mom explained.

“Here, dude,” she said, leaning in to wipe Mike’s face.

Mike rocks back and forth, communicating with a mix of spoken words and signs, waving his hand in the air for “yes.” His mom often jumps in to repeat what he’s said; sometimes it can be hard to understand Mike if you don’t know him well. Toward the end of the conversation, Mike’s asked, “What is one thing people need to know about you?”

This time there was no clarification required. “I’m happy!” Mike said, adding, “I love pizza!”

Darlene smiled. The truth is, she’s exhausted.

Since the day he came home from Tucson Medical Center in 1988, just shy of his first birthday, Mike has required round-the-clock assistance with just about every aspect of living. A shortage of nurses means that Darlene sometimes cares for Mike seven days straight without a break.

Even when she does have enough help, monitoring Mike’s medical needs and keeping a steady stream of good nurses on board is a full-time job. Darlene said her son has been mistreated by caregivers several times over the years; most recently, in 2018, a nurse was placed on the Adult Protective Services registry for abusing Mike by intentionally withholding his medication and failing to disconnect his ventilator tubing, making it difficult for him to breathe.

“I’ve thought about what’s going to happen when we’re dead and gone,” Darlene said of herself and her husband. She doubts Mike would survive for a week.

It’s not just the Lundergans. If anyone should be able to find services for her child, it’s Marianne Scott.

Marianne lives in Sahuarita, a small community south of Tucson, with her family including Maycee, who is 19. Maycee has cerebral palsy, epilepsy and intellectual disability, as well as a speech delay and anxiety. She doesn’t use a wheelchair all the time, but her gait is unsteady and her depth perception is affected so she needs someone by her side at all times when she walks, Marianne said.

Marianne runs a program called Arizona Partners in Leadership, which trains parents to advocate for children with developmental disabilities.

“I’ve been around the block a little bit,” she said, but even she is often stumped when it comes to getting services for her daughter. “The level that a parent is expected to understand and know is crazy.”

The Scotts waited more than six months before finding a speech therapist, and they consistently have trouble finding respite care. Marianne blames the low pay.

“You need to make it lucrative enough that someone will come to my home and change my 19-year-old’s poopy diaper,” she said.

Like Kyra Wade, Maycee had to wait more than two years for a communication device.

And when Maycee turned 16, Marianne took her to a state vocational rehabilitation counselor to discuss employment possibilities. It didn’t go well.

“She looked at me and she said, ‘Well, I don’t think she will be employable,’” Marianne recalled.

“You’re supposed to have all these people in there to help and guide you along the way, and in every system I’ve had to fight and claw and say I know this is my right,” she said. “I have cried so much in the last year. I’m panic stricken. What am I going to do with her for the rest of her life?”

If you’d like to share an experience with intellectual and developmental disability care in Arizona, the Arizona Daily Star and ProPublica want to hear from you. You can share your story in a questionnaire here.

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Amy Silverman’s work has appeared in many places, including The New York Times, Washington Post, The Guardian, Salon, Literary Hub and Lenny Letter, as well as on the radio show This American Life and in Phoenix New Times, where she worked for 25 years as a reporter and editor. During non-pandemic times, she co-hosts and curates the monthly storytelling series Bar Flies in downtown Phoenix. Amy’s younger daughter, Sophie, has Down syndrome and receives services from Arizona’s Division of Developmental Disabilities.

Alex Devoid has been a data/investigative reporter at the Arizona Daily Star since June 2019. He previously wrote about the environment for The Arizona Republic. In 2017, he received master’s degrees in journalism and Latin American studies from the University of Arizona; he is bilingual in English and Spanish.