October 22, 2018
Maine Focus Latest News | Poll Questions | Election 2018 | Susan Collins | Boston Celtics

Forced to wait for help, or get none at all, Maine kids with disabilities risk starting school behind

Erin Rhoda | BDN
Erin Rhoda | BDN
Sophie Parent sits with her mom, Alisha Parent, at Cascade Park in Bangor on Oct. 6, 2017. The 3-year-old from Bucksport, who has autism, is one of about 4,400 children with disabilities or developmental delays who receive help from the state's Child Development Services system.

Editor’s note: Maine’s statewide test results haven’t really changed for years. So we set out to understand what the state should be doing if it wants to see more young people succeed in school and eventually earn some type of post-secondary degree.

This is a continuation of an ongoing series, Your School, that examines what is holding back teachers, principals, parents and communities from helping students realize their full potential, and aims to hold up promising efforts that other places might learn from. Along the way, please write to us with questions and ideas for coverage at mainefocus@bangordailynews.com.

 

Sophie Parent used to keep to herself a lot more. She played on her own. She didn’t seek out much social interaction.

“I could tell that she wasn’t going to be a snuggly kid. Affection was not high on her list,” said her mother, Alisha Parent. “If she didn’t get a lot of hugs and stuff, she didn’t seem to care one way or another.”

At 13 months old, Sophie’s mom said, “Her pediatrician looked at me and said, ‘Have you ever heard of autism?’”

Sophie turned 3 in July. Today, she’s social, affectionate, empathetic and talkative.

“We walk down the street, and she smiles at everyone, makes solid eye contact with people. That took time,” Parent said. “For me to say, ‘OK, Soph, look at Mama and tell me what you need,’ we’ve seen huge progress there.”

Sophie’s steps forward show what can happen when young children with autism — whose numbers have surged in Maine over the past two decades — receive intensive behavioral treatment at an age when their brain circuitry is still developing. The intervention can change the trajectory for young children, research has shown, even allowing children to shed their autism diagnosis and go through school without the support of special education.

The state system that provided services to Sophie, called Child Development Services, or CDS, represents Maine’s biggest push to intervene early in the lives of Maine children with disabilities and reduce their need for costly special education services when they reach school. Over the past three years, CDS has expanded its services for children with autism like Sophie. But the system has also fallen short of its legal obligations, according to interviews with school officials, experts and parents, and based on a review of program data.

A continual state of political flux for more than a decade has reduced CDS’ budget, caused children to go without services to which they’re entitled under federal law, forced other children to wait longer for services than they legally should have to, and caused Maine’s performance to fall behind that of other states in helping young children with disabilities at a time in their lives when those services can make the biggest difference.

As a result, children are often starting kindergarten without having received special services that they should have, said Deborah Alden, superintendent of Regional School Unit 10, which covers seven towns in the Rumford area.

“They’re very behind in their communication skills, behavior, and some of it is even daily living skills. They may not be potty trained yet,” Alden said. “Then we hear [from parents], ‘We’ve qualified for services, but there weren’t any available,’ or, ‘There wasn’t transportation to get us there,’ or, ‘We moved, so we didn’t know where to go.’”

The problem isn’t unique to a specific region of the state — CDS coordinates services through nine regional offices — and it stretches back years, said Ben Jones, an attorney with Disability Rights Maine who advocates for parents when their children haven’t received services.

“It’s definitely a lack of money and resources that CDS rests their hat on to say, ‘We wish we could implement this IEP, but we’re not able to,’” Jones said, referring to the individualized education program that specifies the services a child with a disability or developmental delay is entitled to receive. “In the worst examples, those kids are not even able to go to school because the services aren’t available.”

Early intervention services for the state’s infants and toddlers who need extra help are “everything that the science says should happen,” said Nancy Cronin, executive director of the Maine Developmental Disabilities Council. And, “it turns into this land of bureaucracy and wait times and mess.”

A BDN Maine Focus review of state and federal special education data confirms this:

— The number of Maine children younger than 6 served by CDS fell more than 20 percent between 2005 and 2015, from 5,530 to 4,420, while the state’s total population for that age group dropped by less than 9 percent. The national trend has gone in the opposite direction in that time, according to the U.S. Department of Education: The number of U.S. children younger than 6 receiving special services rose nearly 13 percent, compared with population growth for that age group of just 0.5 percent.

— Maine is among the slowest states in screening its youngest children to determine whether they’re eligible for special services, according to annual reports the state files with the U.S. Department of Education. The logjam can delay the start of those services for Maine infants and toddlers, from birth through age 2.

During the 2015-16 school year, about a fifth of Maine infants and toddlers referred to CDS for screening didn’t receive that screening and an initial planning meeting within the 45-day timeframe federal law requires. Maine’s on-time screening rate of 81 percent placed it among the six worst states on this measure. The prior year, when more than a quarter of infants and toddlers didn’t receive a timely screening, Maine ranked among the bottom three states.

“We do have kids that are not being served right now in CDS,” said Jan Breton, director of special services at the Maine Department of Education.

— Maine performed below the national average in 10 of 12 categories the federal government uses to determine the quality of states’ special services for children younger than 6 during the 2015-16 school year. The performance measures show whether those services help kids with disabilities or developmental delays catch up to their peers with their learning, behavior and social skill development.

CDS director Roy Fowler said poor data collection explains some of Maine’s low performance. More recent data that haven’t been finalized and released show improvement, he said.

— In 2016, CDS’ spending exceeded the amount of funding lawmakers allocated to it by more than $2 million, requiring the state to tap funds from other accounts. State education officials say the program’s budget gap has since grown to more than $3 million. CDS’ budget has rarely balanced since lawmakers cut a third of its state funding in 2006.

Now, CDS is set to enter another period of flux. The LePage administration is proposing to put the state’s public schools in charge of services for the approximately 3,500 3- through 5-year-olds CDS is helping. Services for 900 children with disabilities from birth through age 2 would remain the direct responsibility of the state.

State officials say the reorganization can make the system more efficient, allowing the state to shed administrative responsibilities and reducing travel time for therapists and other service providers who currently cover the nine, large CDS regions.

“The current setup just doesn’t make efficient use of funds, which could otherwise be used to better serve the children,” Fowler said.

Additionally, placing early childhood special education services in public schools eliminates the administrative transition from CDS to the elementary school when a child reaches school age. That transition involves more screenings, more meetings to determine appropriate services, a switch to new specialists, and, potentially, a break in services.

But a change in structure won’t automatically resolve budget challenges and improve services, said Alan Cobo-Lewis, director of the Center for Community Inclusion and Disability Studies at the University of Maine and an associate professor of psychology.

“I know that there’s been concern about CDS cost overruns for a number of years. I think the problem is that there’s been under-appropriation for a number of years,” he said. “If you keep it where it is without the money, I don’t think it’s going to get any better. And if you move it to K-12 without the money, I don’t think it’s going to get any better there, either.”

‘A play date’

Erin Rhoda | BDN
Erin Rhoda | BDN
Sophie Parent plays at Cascade Park in Bangor on Oct. 6, 2017.

Alisha Parent is grateful that Sophie has received the services she has through CDS.

Soon after Sophie turned 2 in July 2016, a trained educational technician started visiting the toddler at her family’s Bucksport home three days a week, three hours each time as part of CDS’ Early Start Maine program for children with autism under age 3. They played with toys, bubbles and balloons.

“It almost looks like a play date,” Parent said.

They worked on cleaning up and transitioning to new activities, making choices, social interaction and everyday routines that often present challenges for children with autism — many of whom prefer to keep to themselves and don’t show much interest in others’ emotions.

Another parent, Joanna Liberatore of Hampden, said having an Early Start Maine specialist visit her son Anthony at home proved a superior approach to regular appointments at a speech therapist’s office.

The specialist “would play with him, but while she was doing that, teaching him how to interact appropriately,” Liberatore said.

After a few months of at-home visits for six hours a week, Liberatore started noticing a change in Anthony, who wasn’t speaking when the Early Start Maine visits began.

“He cared more about the world around him,” she said. “He cared that we were in the room; he would be upset if we weren’t with him. He made eye contact with strangers over time, interacted with strangers, and he started to use more words.”

Matthew Stone | BDN
Matthew Stone | BDN
Anthony Liberatore spends time with his parents, Joanna and Anthony Liberatore, at their Hampden home on Nov. 3, 2017.

Early intervention to help kids with autism is expensive: Research shows it can run $40,000 to $80,000 per child per year due to the amount of time and individualized attention required. But the same research has shown it pays off within a few years as children require fewer services such as speech, physical and occupational therapy, and special education.

A study published earlier this year estimated an early intervention program called Early Start Denver, through which children receive about 15 hours a week of one-on-one time with a specialist who works with the child on developing social skills and changing behavior through play, produced savings of $19,000 per year per child following the program.

Maine’s CDS launched Early Start Maine three years ago, based on Early Start Denver. It’s served more than 150 infants and toddlers with autism in that time, including more than 50 who were receiving the services earlier this fall, said Deborah Rooks-Ellis, director of the Maine Autism Institute for Education Research at the University of Maine, which trains the educational technicians who work with children.

“For autism especially, if they don’t have that early interaction and those opportunities to build communication and social reciprocity and a focus on relationships, they really will be that much more delayed,” said Rooks-Ellis, who is also an assistant professor of special education.

‘It set him back’

Early Start Maine was “life-changing” for Sophie, Alisha Parent said.

But Parent encountered her share of obstacles with CDS that made for a slow start to Sophie’s services and later caused a two-month gap.

“To be 100 percent honest, if I didn’t need CDS to have UCP [the organization that runs the Bangor preschool Sophie now attends], I wouldn’t” go through it, Parent said. “Absolutely not.”

Early Start Maine ended when Sophie turned 3 and she qualified to attend her preschool, Bridges. The transition involved a change in Sophie’s CDS caseworker, new evaluations to determine the services she needed, the completion of a new individualized education program, and a new round of referrals to allow specialists at her preschool to work with Sophie.

During Sophie’s two-month gap in services this past summer, “I worried that she would regress, that she would lose some of the progress that she made … and that was scary,” Parent said.

Erin Rhoda | BDN
Erin Rhoda | BDN
Sophie Parent plays with her mom, Alisha Parent, at Cascade Park in Bangor on Oct. 6, 2017. The three-year-old from Bucksport, who has autism, is one of about 4,400 children with disabilities or developmental delays who receive help from the state's Child Development Services system.

Early Start Maine specialists helped the Parents prepare for the gap, working with Alisha and her husband, Billy, on strategies to use with Sophie to reinforce what she had learned. But the break in services came during one of the most active stages in Sophie’s life for her brain development, when continued intervention could have the greatest impact on her autism.

Anthony Liberatore waited even longer for services after Early Start Maine ended. It took three months before a spot opened up at Bridges in Brewer, where he could receive one-on-one attention and speech therapy. During the wait, he received no services to address his speech delay and to build on what he learned through Early Start Maine.

“He needed to learn routine and interacting with peers, and [the wait] set him back,” said Joanna Liberatore.

Anthony attended Bridges over the summer and later switched to Highland Pre-School in Hampden, which he attends two days a week with the help of a CDS-provided educational technician. Anthony’s parents wanted him to attend a preschool where he would be with normally developing peers.

Even though Anthony was able to switch to Highland, he went another two months without speech therapy after leaving Bridges, Liberatore said, as CDS had no staff or contractors available to provide the service. It didn’t restart until the last week of October.

“You have to be your child’s advocate because nobody else will,” Liberatore said. “His case manager is really nice, but she has never called me to say, ‘We don’t have speech for him right now, but I’ll keep you posted.’ … It’s not because they’re not good at their jobs, not kind, not caring. It’s just, I think, they’re overburdened.”

Matthew Stone | BDN
Matthew Stone | BDN
Anthony Liberatore, 3, spends time with his mom, Joanna, at their Hampden home on Nov. 3, 2017.

The state attributes delays in CDS to difficulty in finding specialists to conduct screenings and provide services, and to a shortage of caseworkers on the CDS staff.

CDS has sustained cuts “for a number of years now, and now it’s come to a spot where something has to be done,” said Carrie Woodcock, executive director of the Maine Parent Federation, which helps parents navigate special education services. “If they don’t get the services they need now, they’re going to be more of a pull on the school system when they get there.”

Shifting system

Throughout the country, school districts are responsible for special services for 3- through 5-year-olds, which is part of the LePage administration’s justification for transferring those services to Maine school districts.

The Legislature is expected to consider that proposal this winter. It won’t be the first time lawmakers have considered a wholesale CDS reorganization.

In early 2005, lawmakers cut CDS’ state funding by $6.5 million, a third of its normal allotment, and instructed the Maine Department of Education to propose a plan for reorganizing the state program to save on administration, not through cuts to children’s services.

Then-Education Commissioner Susan Gendron returned with a plan to move the entire program — services for kids from birth through age 5 — to public schools.

The Legislature rejected that reorganization after a public hearing on the proposal attracted opposition from about 150 parents and service providers. Instead, lawmakers charged a task force with looking into CDS. That panel, led by Cobo-Lewis of UMaine’s Center for Community Inclusion and Disabilities Studies, produced a report in January 2007 that found CDS at that time stacked up well against other states and recommended keeping CDS intact.

“We were doing well back then, but it was expensive,” said Dewey Meteer, who worked as a CDS site director for 11 years in Waldo and Hancock counties and served on the panel. “There was much better service, but just like with everything in state government, if it costs too much, somebody’s going to pull back on it.”

The $6.5 million funding cut took effect about six months after the panel released its report, and CDS’ budget hasn’t balanced for much of the decade since.

A 2010 change to the rules governing MaineCare, the state’s version of Medicaid, has also made it more difficult to balance CDS’ budget without significantly more state funding. The rule change cut the number of services for which CDS could bill the public insurance program. Unable to bill MaineCare — for which the federal government pays about two-thirds of the cost — CDS had to rely more heavily on state funding.

CDS’ budget is naturally tricky to balance. Federal funds cover about 15 percent of the costs, not the 40 percent Congress promised when it passed the first federal special education law in 1975. It’s also impossible to predict how many children will require services each year, and federal law requires that the state provide those services, said Jim Rier, a former state education commissioner, deputy commissioner and education finance director.

In 2007, the Baldacci administration tried again to shift CDS to school districts, albeit fewer districts, as part of the administration’s proposal to merge the state’s nearly 300 school districts into 26.

Lawmakers didn’t go for that proposal, either, but the Department of Education took smaller steps to reorganize CDS in subsequent years, merging CDS’ 16 regional offices into nine and centralizing many of the administrative functions in Augusta.

At the start of the LePage administration, the Legislature eliminated the regions’ independent operating boards, which had substantial power to set budgets and eligibility criteria for children, and to determine the array of services available in each region.

“The state was handing over state and federal money to these local boards to manage,” Meteer said. The system “looked different in every county.”

But one side effect of eliminating the regional boards was that CDS lost many of its advocates. “There were no outside stakeholders to come forward and say, ‘We need more money,’” Meteer said.

‘We just transition them’

With tighter budgets, it became more difficult for some children to qualify for services and for others to qualify for as much help as they previously would have, Meteer said.

Marissa Kelley is an occupational therapist in Warren who has worked with 3-, 4- and 5-year-olds through CDS for about 15 years.

Today, she said, it’s less common for CDS to approve direct occupational therapy services, which help people carry on everyday activities. With less therapy for children who require it, she said, more children still need services by the time they reach kindergarten.

“It’s been a long time since I’ve discharged a child before they went off to kindergarten,” Kelley said. “Now, we just transition them over to the public school team, and they keep going with [occupational therapy] and other services.”

As Maine’s total student enrollment has dropped in recent years, the proportion of students receiving special education services has increased. The cost of providing special education has also risen faster than overall school spending.

It’s also become more difficult for a therapist to make ends meet serving children through CDS — a factor that limits the number of specialists available to work with CDS children. In fact, Kelley and her team of therapists stopped contracting with CDS this school year in favor of contracting with a school district that pays higher rates.

CDS ‘needs help’

Before the Maine Department of Education announced in September its proposal to transition services for 3- to 5-year-olds to the public schools, the department had approached RSU 10 Superintendent Alden about piloting the new arrangement.

State data show the CDS office serving Oxford County, where RSU 10 is located, was the slowest in 2015 to screen 3- to 5-year-olds to determine their eligibility to receive special services. Only 52 percent of Oxford County youngsters received a timely screening and meeting to determine a service plan, state data show, compared with 81 percent statewide.

“There’s not a lot of service providers here in our area in western Maine,” Alden said. “Some of the reasons they haven’t received service, it’s not any one particular person’s fault, but they haven’t. That’s very concerning to us.”

RSU 10 is using this school year to determine how it could take over the services next fall.

“We’re getting to know who the kids are, what services we would need to come up with if we didn’t have CDS at all,” she said. “Do we need to expand our pre-K program?”

One change to work out has to do with transportation. Currently, when parents aren’t available to transport their children to appointments, CDS relies on the state’s MaineCare transportation network, which has sometimes meant young children receive rides in taxis without their parents, said Fowler, the CDS director.

“I don’t think I would put my 4-year-old on a taxi and send them off, but they’ve shown up that way,” said Kelley, the occupational therapist in Warren.

A group of state officials and outside representatives is working on the state plan to transition CDS to public schools. Fowler said the proposal will leave school districts latitude to figure out the best way to provide services.

Alisha Parent, Sophie’s mom, is having trouble seeing how it will work. If 3-year-olds start receiving services at school, will there be enough space for them, and will that space be suitable for a little kid? What about playgrounds designed for older children?

CDS “needs help,” she said. But, “the RSUs, the school systems, they have enough on their plate. When you have teachers who spend their own money already to buy supplies for their classrooms sometimes, how much more pressure can we put on that?”

Maine Focus is a journalism and community engagement initiative at the Bangor Daily News.

Subscribe to the Maine Focus mailing list




Have feedback? Want to know more? Send us ideas for follow-up stories.

You may also like