Arizonans with developmental disabilities were promised help. Instead, they face delays and denials. – Arizona Daily Star

Once considered a haven for people with developmental disabilities, Arizona is denying 4 out of 10 applications for assistance from families that are now forced to fight for services theyve been promised. Above, 11-year-old Kyra Wade, who is deaf and has autism.

By Amy Silverman with data analysis by Alex Devoid, Daily Star and ProPublica Local Reporting Network

This article was produced in a partnership between the Arizona Daily Star and the ProPublica Local Reporting Network, of which the Star is a member. ProPublica is a nonprofit newsroom that investigates abuses of power.

This story has been translated into different formats:

Kyra Wades 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 dont 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 shes 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 couldnt explain what was happening.

Kyra Wade, 11, a fan of road trips and the color pink.

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.

Arizonas 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.

Kyra Wade, 11, sits in her rifton chair after finishing her breakfast at her home in Chandler, Ariz. on August 21, 2020. Wade, who is deaf and has autism, was born 27 weeks premature.

Kyra Wade, 11, sits in her rifton chair as her father, Wyly, logs into her online class session which lasts for 10 minutes from their home in Chandler, Ariz. on August 21, 2020.

Kyra Wade, 11, receives help from her mother, Kadambari, to answer questions for her online class session which lasts for 10 minutes from their home in Chandler, Ariz. on August 21, 2020.

Kyra Wade, 11, lays on the sofa and watches a Disney movie in her home in Chandler, Ariz. on August 21, 2020.

When Kyra Wade, 11, center, becomes frustrated she will hit herself on the side of her head. Kelly Christiansen, her nanny, left, and Kadambari, her mother, hold her hands to stop Kyra from hitting herself as they try and get her to do an online class session for 10 minutes in her home in Chandler, Ariz. on August 21, 2020.

Kyra Wade, 11, left, leads Angelica Fierros, 18, a caregiver, upstairs to Kyra's bedroom in her home in Chandler, Ariz. on August 21, 2020.

Kyra Wade, 11, watches a Disney movie in her bed as Kelly Christiansen, her nanny, rubs Kyra's arm in her home in Chandler, Ariz. on August 21, 2020. Wade cannot be left alone, so someone is always with her.

Kyra Wade, 11, plays with a chewy tube, a sensory object used by many austic children, in her bed at home in Chandler, Ariz. on August 21, 2020.

But like many families in Arizona, the Wades discovered that the states 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.

Developmental pediatricians and special needs attorneys have developed a cottage industry, coaching patients and clients on how to qualify.

While such problems arent unique to Arizona, what sets the state apart is that it has long had a national reputation as a leader in providing home and community-based services to people with developmental disabilities.

A first of its kind analysis of division data by the Arizona Daily Star and ProPublica shows the gulf between Arizonas 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 Arizonas 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.

Maycee Scott, who has cerebral palsy and problems with depth perception, needs someone by her side at all times when she walks, her mother says.

Even those people who gained acceptance into DDDs program have found that the services provided could be limited. According to the divisions 2019 annual report, about 5,000 of the approximately 42,000 people who qualified for assistance ended up in Arizonas 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 states 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 cant find care for her adult brother-in-law; the father in Buckeye who is on the phone with his daughters 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 isnt an American Sign Language interpreter; the Tucson mom who plugged in her daughters 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.

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 agencys highest level of services was increased from $263.2 million in 2013 to $501.7 million in next years budget cycle.

Kyra Wade, 11, left, leads Angelica Fierros, 18, a caregiver, upstairs to Kyra's bedroom in her home in Chandler, Ariz. on August 21, 2020.

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.

Arizonas promised land failed Kyra Wade. After the familys 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 2 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 Kyras 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 shes trying to figure out how to address that, watching videos on YouTube and talking to experts.

Shes 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 doesnt 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.

Kyra Wade, 11, lays on the sofa and watches a Disney movie in her home in Chandler, Ariz. on August 21, 2020. Kyra, who is deaf and has autism, was born 27 weeks premature. She has a tremor in her hand which makes it difficult to use a Kindle on her own and communicate through American Sign Language. Wade has a full-time nanny through the Arizonas Developmental Disabilities Division.

Ka and Wyly feel that Kyra is upset and depressed because of the changes in her body, as well as well as the change in her routine like kids all over the world, she suddenly stopped going to school this spring. Shes back to school part time now and unlike other parents, the Wades cant explain any of this to her. It might have been different if theyd had that communication device.

We would hopefully have been able to tell her that its not the end of the world, Ka said. You dont have to lay down like this.

If Kyra Wade had been born just a couple generations ago, its 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.

In the 1970s, one of the states institutions had behavior treatment programs with innocuous sounding names like oral hygiene, recalled Ron Barber, a former director of Arizonas services for people with developmental disabilities. Staffers 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 youd 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 states 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.

Arizonas 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.

Kyra Wades family spent 2 years trying to win approval for a communication device that would help her express herself, going through the application process four times.

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 Arizonas then-revolutionary plan, recalled Len Kirschner. He served as the second director of the states 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 thats what people want and if you give them that youll 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. Wed 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 states 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 Years 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 governors 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 states 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 didnt want to leave, but she couldnt 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.

If youd 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 ina questionnaire here.

In February, according to the divisions data, more than 68% of DDDs 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 states Medicaid program. People interviewed for this story said that in some cases they waited years.

Senior leadership churn has also been high. Since 2015, DDDs 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 agencys 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 divisions poor performance.

Emory Webster, 11, sits for a photo in her home in Tucson, Ariz., on October 14, 2020. Webster was born with cerebral palsy. Her mother, Adiba Nelson, is trying to get a communication device through Arizona's Developmental Disabilities Division.

Emory Webster, 11, with her mother, Adiba Nelson, in their home in Tucson, Ariz., on October 14, 2020. Webster was born with cerebral palsy. Nelson says Emory was evaluated for a communication device in July 2019 and she's still trying to get the device through Arizona's Developmental Disabilities Division.

Eric Nunn, 29, sits in his bedroom in Scottsdale, Ariz. on August 6., 2020. Nunn was born with Down's syndrome. He received services from Arizona's Developmental Disabilities Division until he was six years old and then didn't qualify anymore. Nunn is a huge fan of the movie "Grease," he says he loves the songs and actors including John Travolta and Olivia Newton-John.

Eric Nunn, 29, right, with his mom, Terri Myers at their home in Scottsdale, Ariz. on August 6., 2020. Nunn was born with Down's syndrome. He received services from Arizona's Developmental Disabilities Division until he was six years old and then didn't qualify anymore.

Jaden Ruiz, 9, in his bedroom in Avondale, Ariz. on October 12, 2020. Ruiz was born with autism and received services from Arizona's Developmental Disabilities Division until he was six years old and then didn't qualify anymore. Ruiz's parents challenged the department and will have his services reinstated.

Jaden Ruiz, 9, with his parents, Maria and Ivan in their home in Avondale, Ariz. on October 12, 2020. Ruiz was born with autism and received services from Arizona's Developmental Disabilities Division until he was six years old and then didn't qualify anymore. Ruiz's parents challenged the department and will have his services reinstated.

Michael Lundergan, 32, was born with bronchopulmonary dysplasia. He requires 24-hour oxygen and sleeps with a ventilator at night. Michael requires 24-hour care, seven days a week. He receives his services through Arizona's Developmental Disabilities Division.

Michael Lundergan, 32, was born with bronchopulmonary dysplasia. He requires 24-hour oxygen and sleeps with a ventilator at night. Michael requires 24-hour care, seven days a week. He receives his services through Arizona's Developmental Disabilities Division. Michael with his mother, Darlene Jones-Lundergan, on August 5, 2020.

Tyler Stumpf, 31, with his dog, Rigley, in his bedroom in Phoenix, Ariz. on October 12, 2020. Stumpf was born with Prader-Willi syndrome. Stumpf and his mother, Melody Linderwell, moved to Arizona from Iowa and Linderwell says she has struggled with communicating with Arizona's Developmental Disabilities Division to get services for her son.

Tyler Stumpf, 31, with his mom, Melody Linderwell, in their home in Phoenix, Ariz. on October 12, 2020. Stumpf was born with Prader-Willi syndrome. Stumpf and Linderwell moved to Arizona from Iowa and Melody says she has struggled with communicating with Arizona's Developmental Disabilities Division to get services for her son.

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 agencys 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 agencys 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.

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Arizonans with developmental disabilities were promised help. Instead, they face delays and denials. - Arizona Daily Star