Thousands of Mass. children diagnosed with autism are becoming adults. Many families find the state unprepared to help. - The Boston Globe (2024)

A record number of children with intellectual disabilities or autism turn 22 years old this year and qualify for adult services with the Department of Developmental Services. The number of people reaching this milestone each year has doubled since a decade ago to more than 1,430, driven by the tremendous increase in children with autism. Autistic children now account for more than half of these new adults.

“There has been very little planning to prepare for this,” said Michael Borr, the parent of an adult son with autism and former chairman of Advocates for Autism of Massachusetts. “I can go back to the speeches I made every year, and I would talk about the tsunami that is coming. It’s not coming any more; it’s here. We are in a crisis.”

Families with severely disabled adult children desperately depend on the state for help. Those with the most significant health and safety challenges, including autistic adults who are nonverbal and engage in self-injury or aggression, can qualify for group homes.

The Department of Developmental Services, which licenses privately run group homes and also runs homes itself, acknowledged in a report to the Legislature last year that its ability to provide housing to autistic adults is “extremely limited” because they are “very different” from the agency’s traditional clients.

The department has historically provided housing predominantly for intellectually disabled adults, who generally don’t have the social and behavioral challenges of those with profound autism, which requires specialized training to manage. The department currently funds group home placements for 418 autistic adults, according to the agency.

A Globe Spotlight Team investigation into residential schools specializing in children with autism found that hundreds of disabled students under 22 have been harmed or neglected in recent years at school residences with low-paid and poorly trained caregivers amid high turnover.

The risks are equally as great when these children enter adulthood. Massachusetts group homes for adults had more than 4,000 vacancies among direct care staff, more than a quarter of the necessary workforce, according to a survey earlier this year by the Association of Developmental Disabilities Providers, which represents most of the agencies that run the homes. Day programs have also been hit hard.

“We’ve got a screaming problem with staff who don’t have enough training,” said Catherine Boyle, a parent of an adult autistic son and a housing expert. “Guess what staff without enough training do? They quit. These huge vacancy rates are hitting at the same time the autism wave is hitting.”

While the state has directed millions more dollars to group home providers to help them recruit and keep staff, pay remains similar to that of some retail and fast food workers; $17 to $20 an hour is typical. The low pay “feeds the problem of abuse and neglect because many agencies are still using temp agencies to staff residences or not getting the most qualified applicants,” Borr said.

The state provides virtually no data to parents or the public about mistreatment of autistic adults living in group homes. But interviews with about 20 parents and recent abuse and neglect data obtained by the Globe suggest that autistic adults are frequently victims.

The Globe asked the Disabled Persons Protection Commission, an independent state agency that investigates abuse and neglect complaints involving disabled adults, to search its database for cases involving victims with autism.

Since the commission began tracking that information in 2021, complaints about mistreatment of autistic people who live in group homes overseen by the state have grown nearly 80 percent to more than 425 last year. Since 2021, the commission has found that in almost 100 cases it investigated, abuse or neglect did occur, according to data provided to the Globe. Some of the cases may have occurred in group homes run by the Department of Mental Health.

In a written statement, Mary McGeown, the state’s undersecretary for human services, said that “despite a tremendous amount of progress’' providing services to autistic residents, “there is still much work to do to address gaps in the educational, employment, residential, and social services so that children, adolescents, and young adults with autism achieve their fullest potential. Specifically, in assessing residential services, we want to make sure that the service model meets the unique needs of this population.’’

While some parents say their children receive good care in group homes, there have been persistent complaints about abuse and neglect for years.

In one case last year, a 22-year-old man awoke at his group home in Norton, run by Amego, with cuts and bruises on his face. A caregiver claimed that the young man injured himself by banging his head against a wall, according to a state investigation report. He is one of the few adults in a group home whose bedroom is monitored by video camera; privacy concerns have made this type of close monitoring unusual. When investigators watched the footage, they saw that same caregiver straddling the young man on his bed and repeatedly striking him in the face with his cellphone while telling him to “stop it.”

At another Amego home in Plainville that same month, an employee punched a 30-year-old resident in the face so hard he broke the orbital bone surrounding the resident’s right eye. A co-worker who witnessed the assault came forward, despite the assailant pressing her to lie, according to a state investigation report and court records.

John Randall, president of Amego, said the organization takes strong action when suspected abuse occurs, reporting mistreatment not only to the Disabled Persons Protection Commission but also to police, which speeds the process of bringing criminal charges against abusers. The employees in the Norton and Plainville cases have been charged with assault.

In both those cases, the victims are nonverbal and could not provide accounts of what happened to them. This was also the case for Molly Hooker, who was unable to communicate her basic needs and desires. As a result, staff at her group home, run by Road to Responsibility, based in Marshfield, were supposed to carefully watch Molly for unusual signs of pain or illness, such as refusing to help dress herself or excessive sleepiness. They apparently failed to do so, according to a state investigation report.

One morning in July 2022, an employee who was helping Molly get out of bed did not use the proper equipment and Molly fell, her legs stuck awkwardly underneath her. The employee did not alert anyone. Molly refused to walk for four days, until finally her mother, Janet Hooker, insisted that she have an X-ray. Molly turned out to have a badly broken femur that required surgery and a rod and seven pins to hold the bones together.

Christopher White, president of Road to Responsibility, acknowledged that “the staff person made a really poor judgment in the moment that resulted in a delay in medical care. As soon as management became aware of the problem, the employee who failed to follow protocols was suspended and ultimately terminated.”

But, he said, “it’s also important to note there are a lot more positive things happening in group homes on a daily basis despite the workforce challenges.”

For Molly, the broken leg contributed to a cascade of medical problems, her mother said, and she died in June.

“She wasn’t telling people she was in pain,’’ Janet Hooker said. “Her way of telling them was by not walking.”

The state typically moves disabled children from special education programs into adult services on the day they turn 22, a stressful transition that parents liken to falling off a cliff. To qualify for Department of Developmental Services programs, a person generally must be unable to handle the demands of daily life. Some autistic adults may need only job coaching, socialization groups, or support at their family home, while others require around-the-clock supervised care in a group home.

If a group home is not available for a 22-year-old who has been living at a residential school, the department can simply send the individual home, where parents must cobble together their care.

While federal law guarantees special education services for disabled children, adult services are largely dependent on eligibility criteria and funding. And the uncertainty is particularly hard on parents as they age.

“The fear for many parents is what happens when we are not there anymore,” said parent Maura Sullivan, director of Government Affairs and Health Policy at The Arc of Massachusetts, a nonprofit advocacy organization for the disabled.

When then-governor Deval Patrick created a special commission on autism in 2010, the group’s initial report three years later cited a “staggering” increase in the number of Massachusetts children with autism — children who would eventually become adults. Four percent of children here have autism, significantly higher than the US average, according to a 2019 national parent survey.

In 2014, the administration began providing services to autistic adults with no intellectual disability, significantly expanding the number of families seeking help from the Department of Developmental Services.

But in some respects, the agency appears unprepared to help them. In a report to the Legislature last year describing challenges implementing the major autism services bill that included the expansion, then-governor Charlie Baker’s administration lamented that “Parents of adults about to turn 22 often express interest in residential services.’’

“DDS’ ability to provide housing supports for newly eligible individuals, including those with severe behavioral health challenges and significant mental health issues, is extremely limited,” the report went on to say, “as these individuals present with very different needs compared to individuals with intellectual disabilities who reside in traditional DDS group homes.”

It’s only now that the agency and the Department of Mental Health plan to open five specialized group homes for 20 adults total with autism and mental health disorders, targeted for summer, according to DDS.

When Kati Dunne turned 22 on May 21, her mother packed up her belongings at her residential school, the New England Center for Children, where she’d lived since she was 12. As a “priority one” adult — meaning she has autism, an intellectual disability, and severe needs — Kati was promised a spot at a new house being built by Amego. The house, however, was not ready and Kati moved into her mom’s house in Wellesley while waiting for a temporary home to become available. Kati’s needs are so extreme that her family could not care for her long term.

The Department of Developmental Services placed Kati in a temporary, emergency residence in August. But her mother, Tere Ramos, said she is frustrated with what she believes is inattentive care there and has found the agency unresponsive to her concerns.

“They are scrambling to make space for all these adults coming in, and there is no space to be had,” Ramos said.

“DDS doesn’t really understand what their clients’ needs are,” she added.

Nearly every parent has a story about chronic problems and perils in group homes.

Some parents who have repeatedly complained to the Department of Developmental Services or to group home providers said they have been labeled as too demanding. A number of parents who spoke with the Globe requested anonymity because they were afraid that state officials or providers would retaliate against them or their child if they spoke out.

Most parents said Massachusetts has never solved long-term systemic problems of low pay and inadequate training for many of the employees who care for their children, creating unacceptable risks that the pandemic worsened. They spoke of a lack of good options for their sons and daughters.

Michael Borr’s story is typical. His adult son, Jonathan, arrived at his parents’ home for a Saturday visit with red and purple bruises on his torso in the shape of a handprint. The Disabled Persons Protection Commission later ruled that a caregiver had grabbed him hard, said Borr, who also is a member of the Amego board of directors.

Diane Ignacio’s son, Dylan, woke up at his group home with two black eyes one morning two years ago. An emergency department doctor told her Dylan had suffered some sort of trauma, she said, but she never found out how it happened.

Peter Anastasi’s son, Peter, lives in a group home where a destructive housemate has ripped doors off kitchen cabinets, smashed televisions, and kicked holes in walls, which are now covered with plywood, he said. He had requested 18 months ago that his son be moved to another house. The Department of Developmental Services “is looking,” he said.

DDS does not comment on specific cases, but “makes every effort to honor the wishes of clients and their families, to the extent practicable,” said Olivia James, spokeswoman for the Executive Office of Health and Human Services.

But sometimes, parents said, even basic standards are not met. Bathrooms are missing toilet paper, soap, and towels. Promises to take residents to the movies, shopping, and for walks go unfulfilled.

One mother said her son has suffered continued neglect at his group home over the past five years, including a lack of help with personal hygiene and communication devices that have been repeatedly lost. These devices are the only way her nonverbal son can make his needs known. The house has cycled through four managers in four years, and even though the state pays for her son’s care, it seems to exercise little authority to right the ship, she said. The mother requested anonymity, but she shared her emails to the group home operator and the Department of Developmental Services with the Globe.

“It’s such a travesty what is happening to these young people who have severe autism,” she said. “There is no oversight, nobody cares.”

Liz Kowalczyk can be reached at lizbeth.kowalczyk@globe.com.