Frustrating, exhausting, heartbreaking. Those are the words parents used again and again when describing what it’s like to navigate Child Development Services, a division of the state’s education department that is responsible for providing disability resources to young kids.

The state is required to provide support and therapies for disabled children from birth until they enter the K-12 school system. But for years Maine has been failing this vulnerable group, flouting federal law and missing crucial early intervention that can reduce the lifelong impacts of disabilities, according to activists, legal experts, elected officials, doctors and others who spoke with the Portland Press Herald/Maine Sunday Telegram.

“There are broad and deep systemic problems with CDS and with kids accessing legally required early intervention services,” said Atlee Reilly, a lawyer for Disability Rights Maine, which advocates for and provides legal representation to people with disabilities.

“Individually they can be fixed, belatedly, with pushing from families, advocates or attorneys. But the systemic problems are where it’s been tough to move the needle.”

State officials have long known CDS is not working as intended, but the issue was given renewed focus in November when CDS employees overwhelmingly voted that they had no confidence in their director, Roberta Lucas. They said the agency has a toxic work environment and long-running issues that make their jobs unmanageable.

On Thursday, the education department is scheduled to present its latest plan for the future of CDS to the Legislature’s Education Committee.

‘VIOLATION OF CHILDREN’S RIGHTS’

Accessing services like physical, occupational, speech and behavioral therapy through CDS can be arduous. A dozen parents who spoke with the Press Herald said daily calls to their CDS case managers went unanswered for weeks. Some had as many as three different case managers in the span of a year. Others were told they should throw in the towel and try to get services another way.

But the system really bottlenecks when it comes to finding service providers, they said. CDS is required to provide services within 30 days of determining that a child is eligible. But the agency frequently fails to meet that mark.

The issue is most severe for children ages 3 through 5 years old.

Children wait weeks, months, sometimes years, for the services to which they are legally entitled. Some enter the school system before ever receiving appropriate services, exacerbating the gaps between them and their nondisabled peers.

Between July 1, 2018, and June 30, 2019, (the latest data available), more than 10% of CDS clients, 632 children, were on waitlists for services, according to a 2020 report commissioned by the Legislature’s Education and Cultural Affairs Committee.

That violates children’s rights under the federal Individuals with Disabilities Education Act, which states that all children with disabilities should receive a free and appropriate education from birth until 22 years of age.

“The waiting list could result in costly due process hearings and potentially class action lawsuits as the waiting list violates the rights of children and their families under IDEA,” the report states.

The report does not say how long children remained on these waitlists, and the state has not fulfilled several public records requests filed on Dec. 4 seeking data for the past 10 years on how many children went without services, and for how long.

But child care providers, pediatricians, CDS employees, activists, legislators and parents who spoke with the Press Herald said those numbers have grown significantly in recent years.

The state said it understands that CDS is failing and that it has tried to make appropriate fixes but that its efforts haven’t been supported by the Legislature.

“The Department recognizes that the structure of CDS for preschoolers does not meet the needs of our youngest learners and must change,” a spokesperson for the DOE said in a statement. “As a result, the Department has proposed changes to CDS in the past that have not been enacted by the Legislature.”

Education Commissioner Pender Makin and Lucas declined the Press Herald’s request for an interview about CDS waitlists, the longevity of issues at the agency, and the DOE’s plan to provide immediate and long-term fixes.

‘ALL I WANT IS THE BEST FOR MY CHILD’

Remington McBlais, now 6, went an entire year without getting the services he needed.

Remi, as his mother calls him, is autistic and has ADHD, depression and anxiety.

Before the 2022-23 school year even began, CDS warned his mother, Kasey McBlais, that it was unlikely to be able to provide him with his approved occupational therapy or one-on-one classroom support staff.

She was told there were too many other kids waiting, she said.

“Basically that was our experience,” McBlais said. “CDS approved Remi for a one-on-one, he really needed a one-on-one, but he never got one.”

She enrolled him in pre-K at his local elementary school in Buckfield anyway – and thanks to a teacher who went above and beyond, Remi did well in his first year of school, she said. But numerous challenges might have been avoided with proper support and attention.

Remi was at times taken out of class or barred from recess for not behaving the way his teacher expected. Sometimes one of the two teachers would take him out of class, leaving the other to manage a class of around a dozen 4-year-olds solo.

Sometimes he was sent to a different classroom to sit in a chair by himself in what he referred to as “time out.”

“He felt like he was being punished,” McBlais said.

For almost the entire school year, she called Remi’s CDS caseworker every other day and sent emails almost as often to check in about getting the one-on-one. Responses were sparse.

“It was heartbreaking,” she said. “Every day I worried about what the report would be like from the teacher. All the time I was holding my breath.”

“As a mom, all I want is the best for my child,” she said. “I want him to have all the services that he has a right to.”

Candice Napoli couldn’t persuade her local school to take her son Roman, who is autistic, and, like Remi, had qualified for an education technician to provide one-on-one support.

She had everything ready for Roman’s first day of pre-K at East Grand School in Danforth, near Houlton.

“I had new clothes, a backpack, everything was ready to go,” she said.

Then the school said they couldn’t find an education technician to work with him.

Napoli said she was disappointed and worried that Roman wouldn’t have the support he needed, but she decided she would send him anyway.

Within an hour of telling the school her plans, she got another call from CDS to say he couldn’t go to school without an education technician, that the school got to decide, and that pre-K isn’t mandatory anyway.

“I felt like they were discriminating against me,” she said.

Superintendent Peggy White said in a statement that the district tried to find someone locally. That they’re still looking for an ed-tech. “But it’s a town of 500 people,” said White. “There aren’t a lot of ed techs in town, especially with the right training.”

She said before kids reach age 6, it’s the job of CDS, not the school district, to find support staff.

“When kids reach Kindergarten it’s on us, the school. Up until that time it is CDS’ responsibility.”

‘I WAS LOSING HOPE’

As children wait for the physical, speech, behavioral and occupational therapy that they are entitled to, the downstream human and financial costs of the state’s failure to provide it continue to grow.

Experts say early intervention can spell the difference between a disabled child being able to learn, work and eventually live independently as an adult or needing lifelong support. And when early intervention is missed, it’s difficult if not impossible to make up for lost time. Once children reach age 5, crucial developmental windows in which they are most likely to make significant gains start to close and the trajectory of their lives become more immutable.

Some parents desperate to get their children services have been forced to take drastic measures – suing the state, quitting their jobs and forgoing income and health insurance to homeschool their children. Some go broke sending their children to private preschools they can’t afford but don’t believe they can go without.

Christine and her husband cried the day they heard their daughter got off the waitlist for a private preschool designed to support all children, including those with disabilities. Christine asked to be identified by her first name only, to protect her daughter’s identity.

Her daughter has disabilities that make it hard for her to regulate her emotions, speak, walk and interact with others. Just after she turned 3, CDS determined she should receive speech, occupational and physical therapy.

But in the five months between that determination and her first day of school, she received only nine speech therapy sessions, a small fraction of her legal entitlement.

She started speaking less and less and – with no other tools at her disposal – started having frequent and intense meltdowns.

Trips to the playground, grocery store or to get coffee became more challenging. Quality time became harder to find because she was busy calling and emailing CDS, only to hear again and again that no one was available to provide her daughter with the services she desperately needed.

“I was losing hope,” Christine said.

‘A RAT IN A WHEEL’ 

State elected and appointed officials have known for at least 10 years that CDS is falling short of its legal responsibilities and failing to provide proper support to one of the state’s most vulnerable populations. The state says it is primarily constrained by an outdated system that is built into statute and hard to change.

“There have been persistent and complicated challenges spanning decades related to the service provision and the organizational structure that we work through with CDS services,” Education Commissioner Pender Makin said in a Dec. 5 presentation to the Legislature’s Education and Cultural Affairs Committee.

But legally, that’s no excuse, according to a 2012 Office of Program Evaluation and Government Accountability report.

“Maine, like all other states, has chosen to receive the federal funds available for (Individuals with Disabilities Education Act) and, therefore, must comply with specific federal regulations,” the report states. “These regulations include requirements to determine eligibility and provide services to all eligible children within specified timeframes.”

Ensuring those regulations are met is the DOE’s obligation, but the weight of that obligation falls on the shoulders of CDS employees.

Individualized education plan facilitator Sarah Girard has worked at CDS for 19 years on and off. She started as an intern right out of college and fell in love with the job and the organization.

In her early days at CDS, she was able to go above and beyond by checking in on families regularly, connecting them with services and making sure they were getting all their basic needs met, she said.

“I felt like I was really helping families, helping kids,” she said.

But around 10 years ago, she said, things started changing and CDS today doesn’t feel like the same agency where she started as a bright-eyed intern all those years ago.

Girard said she is overwhelmed with work, frustrated with the organization and upset that she can’t give children and their families the attention they deserve. She said she spoke to the Press Herald on her own behalf, not as a representative of CDS or her union.

Her job entails meeting with children and families, reviewing their needs and making recommendations for services. Her caseload is supposed to be capped at around 170 children; she is responsible, she said, for over 200.

She can barely keep up and has very limited overtime.

“I feel like I’m just a rat in a wheel,” she said.

‘THE STAKES ARE TOO HIGH’

Legislators, activists, employees and K-12 administrators say the major issue at hand is that the state has never committed to providing the funding necessary to create a new system and ensure it will work long term.

“People don’t want to pay to do it right,” said Rep. Rebecca Millett, D-Cape Elizabeth, who sits on the Legislature’s Education and Cultural Affairs Committee.

Millett ran for the House in 2020 largely because of CDS’ unsolved problems, she said. She had reached her term limit in the Senate after eight years, but she didn’t want to leave the State House until the system was fixed.

“I just couldn’t walk away,” Millett said.

Since at least 2005, the Legislature’s Appropriations and Education committees have been trying to fix CDS. They have convened working groups, considered multiple reorganization plans and a dozen bills, and commissioned at least three reports on CDS.

The Department of Education under Governors John Baldacci, Paul LePage and Janet Mills have all tried and failed to make significant changes to the system.

Today, many people agree that the answer to CDS’ woes is to start providing services in the public school system – meaning that children with disabilities would get all the appropriate services through their local school district. Sixty of Maine’s 259 school districts, including Portland Public Schools, have signed agreements with CDS and are already doing this.

But major questions remain about how this would work, including who would pay for the services – the state or local school districts – as well as who would be responsible for finding providers that are few and far between, how it would be structured in a state without universal pre-K and what support would be given to poorer school districts if they had to take on this hefty task.

Legislators like Millett don’t want to change the system until these questions are answered.

“There has been this sense from the department that we should just trust them, and that they’ll figure it out,” Millet said. “But the stakes are too high. These years of a human life are the most formative.”

In the meantime, the problems are snowballing. As CDS workloads become more unbearable, employees leave. When children don’t get the services they’re entitled to within the appropriate time frame, they become eligible for makeup time, meaning providers end up with even less room on their schedules and waitlists for other children grow. And when children don’t get the services they need when they’re 3 and 4 years old, the already financially strained K-12 system they soon enter is left to bear the consequences.

“I have children who have been waiting 18 months for a speech therapist, one who has been waiting a year for a classroom placement,” said Girard, the IEP coordinator. “These kids need services now. It breaks my heart.”

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