Video: Nanaimo parent advocates for support for ADHD

NANAIMO – Cost for family for specialized care for daughter with attention deficit hyperactivity disorder prohibitive.

Lindsay Handlen

Lindsay Handlen

A Nanaimo parent hopes support for children with attention deficit hyperactivity disorder (ADHD) will be on equal footing as support for children with autism.

Susan Handlen said her daughter, Lindsay, was born with the complex neurodevelopmental disorder and suffers from anxiety and a severe learning disability. While Lindsay is 10 years old, she reads at a Grade 1 level.

Handlen said Lindsay needs one-on-one assistance. She wasn’t doing well at Uplands Elementary School where she was enrolled two years ago. She had behavioural issues, was suspended seven times and didn’t want to go to school, prompting Handlen to withdraw her.

After enrolling Lindsay at Nanaimo Unique Kids Organization learning centre, where Handlen said there is a better teacher-to-student ratio, she has thrived, but the $6,000 annual fee is prohibitive. If Lindsay had autism, she would be eligible for provincial funding, said Handlen.

Nanaimo Unique Kids Organization is in the purview of the Comox Valley school district’s North Island Distance Education School.

Handlen said she and her husband receive no help and she is becoming worn out. Lindsay’s designation for intensive behaviour intervention or mental illness nets $9,500 for North Island Distance Education to pay for teaching support, through which NUKO receives a portion of that funding.

“We pay a $6,000 parent portion to NUKO to have our child there, which I get no funding for,” said Handlen. “What I’m looking for is some funding to cover that, so that it doesn’t come out of our pockets.

Barbara Robinson, Nanaimo Unique Kids Organization supervisor, said Lindsay has improved since enrolling in September 2015.

Lindsay had trouble focusing, said Robinson, and if she perceived things weren’t going her way, she would start shouting, scratching and pulling staff and children’s hair. She would throw things and harm herself, poking herself with push pins.

NUKO’s approach includes time out and calming strategies and Robinson said Lindsay “got herself to a much calmer state within the first two months” of attendance. She acts out less frequently and calms quicker. She has friends and is fitting in, said Robinson.

“She’s doing more school work, she’s getting a lot of her school work done and working hard she’s really working well in a group, which is something that she wasn’t very successful at when she first came and now she’s doing a lot of group activities, so we’ve seen great strides there,” said Robinson.

What is ADHD?

Lisa Van Bruggen, a Victoria-based clinical psychologist with Island Health, said ADHD is believed to be genetic.

When diagnosing children and adolescents, Van Bruggen said she is looking for an ongoing pattern of inattention or hyperactivity and impulsivity which is getting in the way of daily life or typical development.

“We’re really looking for things that are out of the norm for that age and so often times kids with ADHD will also have difficulty with organizing, maintaining their attention, holding information in mind,” Van Bruggen said.

Autism and ADHD have an “overlap” in symptoms but are different disorders. Children can have both, or one or the other, said Van Bruggen.

“ADHD really makes it hard for kids to focus, stay organized and listen to direction,” Van Bruggen said. “In contrast, autism, which also is a developmental disorder, really affects the way a person communicates and interacts with others.”

Funding situation

In an e-mail, the Ministry of Education said decisions regarding planning and delivery of support and services for students, including those with ADHD and autism spectrum disorder, are made by school boards and administrators.

The Ministry of Health has funding available for children with autism. Those under six years of age are eligible for up to $22,000 a year for autism intervention services and therapies. Those between six and 18 are eligible for up to $6,000 a year for out-of-school autism intervention services and therapies, according to the health ministry.

The Ministry of Health referred inquiries to the Ministry of Children and Family Development, which said children and youth diagnosed with autism and ADHD are served through community-based child and youth mental health services.

Autism funding recognizes the research based on the effectiveness of intensive interventions for children with autism spectrum disorder is very strong, said the ministry.

Studies have demonstrated that many of the difficulties associated with autism are treatable, particularly if the child experiences early intervention services. Studies also show that funding intensive behaviour-based interventions for children with autism can result in significant and lasting reductions in symptoms for many children.

Unfortunately, the same evidence-based experiences and data are not available regarding early intervention service outcomes for children with ADHD, which is why there is no funding for that, the ministry said.

Elizabeth Martin, assessment coordinator for Vancouver Island Children’s Assessment Network, an Island Health program which provides diagnostics for conditions such as autism and fetal alcohol spectrum, said the situation can be problematic.

“When one particular type of condition is funded and other conditions, which can be equally disabling, are not, you set up a situation where people almost want the diagnosis,” said Martin. “I don’t think anybody wants a diagnosis, but there’s a push for it, trying to find out, would this fit an autism category?”

Martin said it’s a complex picture and suggests people advocate for services to be funded as needed.

“[Write] to your MLA and go to the meetings down at city council and advocating hard for those services,” said Martin. “The difficulty is often [that] the people [who] are in need of it are the last people who have the time, resources and energy to go out and do that advocating.”

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