Part 2 of 4: The high costs of treatment burdens families
Approximately 1 per cent of Hamilton’s population lives with autism, a disorder that impedes a person’s ability to communicate and make friends. With no cure, families turn to a variety of therapies that have proven successful in alleviating its wide-ranging symptoms.
Part 2 of Navigating Through the Fog, a four-part series by Flamborough Review reporter Catherine O’Hara and Julie Slack, Milton Canadian Champion reporter, reveals a lack of government support leaves families in dire financial straits.
By Catherine O’Hara and Julie Slack
METROLAND WEST MEDIA GROUP
Max Carefoot, 6, sits attentively at a pint-sized table, his hands gently resting on his knees. On cue, he vocalizes a series of words, carefully chosen to perfect his enunciation skills.
Working on his bite and blow sounds, the bright-eyed boy repeats after communicative disorders assistant, Gwen Blackburn.
My roof. My leaf. My calf. My knife. My cuff. My elf. My giraffe. My chief.
Each letter of every word is audible. His speech is clear and his diction is precise.
“He’s doing amazing with words,” said Blackburn, who has been working with the Oakville boy for the past year. And considering Max was non-verbal until two years ago, his achievements are worthy of a gold star.
“I call him the hardest working kid in autism,” said his mom, Katrina Carefoot.
Max was diagnosed with autism spectrum disorder (ASD) when he was two and a half years old. When his family’s suspicions were confirmed, the Carefoots immediately sought early intervention.
Max attends blueballoon in Burlington, where he receives speech, music, behaviour and occupational therapies and enjoys social groups for four hours every day of the week – a schedule he has maintained for the past three years. The Fairview Street facility, which prides itself on its ability to offer a comprehensive approach to health care, provides access to a variety of therapies all under one roof.
“We integrate our programs,” explained Natalie Elms, blueballoon’s manager of business, development and community relations. “We are working together on the same plan.”
Those programs, however, come at a cost.
To cultivate the special person who is Dorian Poe, his parents have spent their entire life’s savings and then some. To put it in relative terms, Christine Poe and her husband, Brett, could have paid for their single-family dwelling in central Burlington a few times over.
Nine-year-old Dorian was diagnosed with autism spectrum disorder when he was in Grade 1.
The Burlington boy is bright, funny, loving and super sensitive. He can, however, suffer meltdowns that see him scream, kick, hit and become destructive, showing absolutely no remorse.
With wait lists restricting access to early intervention, the Carefoots and the Poes opted to privately fund their sons’ therapies. While they receive some financial support from the government, the bulk of the costs associated with treatment has come out of the families’ pocket.
“We have gone into major debt because of this,” said Carefoot. “We are very blessed that we are middle class enough that the bank will give us enough rope to hang ourselves.”
When the family first purchased their Oakville home a decade ago, they carried a $215,000 mortgage. Today, that debt hovers around $300,000.
“You do what you have to do for your kid,” she stated.
It’s a sentiment that eerily resonates with Poe. She wouldn’t hesitate to spend every penny she has to ensure Dorian, a student at Burlington’s Missing Links, is in a safe, educational environment so he can grow up to meet his full potential.
Poe said their family was forced to sell their “dream home” in Millcroft to move to a more affordable one in central Burlington. Still, they carry a hefty mortgage and financial hardship is a day-to-day struggle. The puppet shows and small-scale fundraisers Poe holds don’t come close to supporting the true costs of Dorian’s therapies.
The investments into intensive interventions, however, have not been in vain.
Prior to undergoing therapy, Max never made eye contact, would run into walls and suffered meltdowns. The toddler would also have episodes where he’d become so upset not even his mother could soothe him.
“It’s heartbreaking as a parent,” said Carefoot. “You feel like a failure.”
As for Dorian, he can’t function in the public school system. When he attended Grade 1 at Ryerson Elementary School, Poe recalls being called to pick him up on numerous occasions when he was throwing things or having a tantrum.
He struggled with academics, behaviour and the ability to socialize appropriately.
“I’d be called in to pick him up because nobody could settle him,” she said. “I was always crying and blaming myself, wondering if it was something I did.”
Within months of working with the professionals at blueballoon, Max’s behaviour started to change. Transitioning from the facility’s foyer to a therapy room – a changeover that used to elicit tantrum-like behaviour – was beginning to go without a hitch.
Then, in August 2010, Max started to talk.
“When you inch along and you inch along, you can’t even see the inches,” said Carefoot of her son’s progress. “But when they all come together and you are able to see a huge jump like that…it’s remarkable.”
The milestone was an emotional moment for Carefoot and her husband, Scott. “I wanted to jump over the moon, I was so excited,” she recalled. Since then, the family celebrates the breakthrough annually, as if it were Max’s birthday.
At Woodview Mental Health and Autism Services, a learning centre that operates 12 programs in the Halton area, where Dorian previously attended for two years, the Burlington child flourished under the one-on-one care.
The individualized program came at a whopping $45,000 annual cost.
Dorian, said his proud mom, is now an A student – an achievement he’s maintained throughout his education at Woodview and his current school, Missing Links, which provides academic and group Applied Behaviour Analysis and Intensive Behavioural Intervention (ABA/IBI) therapies for children with autism. It costs $24,500 per year.
Determining the appropriate day-to-day curriculum for children on the spectrum is a specialized process that considers every aspect of a child’s individual needs.
In assessing children with autism, blueballoon maps out a child’s strengths in numerous areas, including gross and fine motor skills, expressive language and social skills. Where gaps are identified, programs are designed to assist the child.
Children with autism have the capacity to learn the same things as a typically developing child, said Elms. However, in some areas, they need support.
The earlier those supports are put in place, the better. Early, intense intervention is a key element to success.
“If you get them immediate early intervention, that could change the whole course of their lifetime,” said Trish Simons, a mother of three autistic boys and president of the Hamilton-Wentworth chapter of Autism Ontario.
It’s the early intervention that allowed Max to burst out of his bubble, and he now leads a happy and fulfilled life. Had the family waited an additional two years to access government-funded therapy through Halton Region’s service provider, Carefoot knows the outcome would have been different.
“We would have missed the boat,” she said.
Not all parents with children on the spectrum can privately fund the necessary therapies. This, said Carefoot, leaves families in autism’s fog.
“Families with low income are discriminated against,” she said.
The sheer number of people affected by autism was made evident to the Progressive Conservative’s Ancaster-Dundas-Flamborough-Westdale candidate, Donna Skelly, who hopes to secure a seat at Queen’s Park in the next election.
When the Tory hopeful was campaigning last year, she was “absolutely shocked” by how often parents wanted to discuss better funding for autism.
“They seem to be dealing with this quietly and privately, but they are truly desperate,” said Skelly.
The province’s Ministry of Children and Youth Services, which is responsible for autism services for children ages 0 to 18, is determined to make further progress for these kids and their families.
“Since 2003, we’ve more than quadrupled funding for all autism services to over $186 million. Ontario has almost tripled the number of young people receiving Intensive Behavioural Intervention (IBI) services since 2003,” said Gloria Bacci-Puhl, spokesperson for the ministry, adding that an additional $25million has been allocated to expand Applied Behaviour Analysis-based services and supports across Ontario.
According to the ministry, some 8,000 children living with ASD will benefit annually from the government’s investments, but that still leaves 1,702 on the wait list, as of October 2012.
The tens of thousands of dollars invested in therapies for little Max and young Dorian, are unmanageable for most families. The government, claimed Skelly, has the funds but isn’t managing them appropriately.
“These people aren’t asking for anything that is outrageous or unfair,” she said. “I know we don’t have a lot of dollars but the dollars we do have, have to go to things we prioritize and this has to be made a priority.”
Gabe De Roche, senior advisor of communications for the Minister of Children and Youth Services, Eric Hoskins, acknowledged there is more to do.
“Our new investment of $25 million in ABA services for children and youth with autism is an unprecedented expansion of this crucial program,” said De Roche. “We’ve made tremendous progress but we know there’s still more work to do, and we are determined to continue making progress on behalf of children with autism and their families.”
The more funding the government allocates to provide youth with the necessary intense therapies, the less money it will spend on caring for autistic individuals in the long-term, said the president of Autism Ontario’s Hamilton-Wentworth chapter.
Added Skelly, “If you invest the money, the child is healthier; there is less need to supply more dollars long-term. Why wouldn’t we do this? Why wouldn’t we support the intensive therapy?
“It makes sense; why isn’t it being done?”
Currently, adults with ASD have few choices and receive little funding. As youth with ASD approach adulthood, government agency staff begin transitioning individuals and their families to a variety of programs and services that best meet their needs in the adult system, according to Bacci-Puhl.
The Autism Societies of Ontario and Canada offer services and supports, but if adults can’t find full-time employment, their future financial stability is up in the air.
In the meantime, families of those living with autism – youth or adults – continue to struggle.
Hoping to help other families suffering financial hardship as a result of autism, the Poes created the Dorian Poe Foundation. The Burlington clan never managed to raise enough to help others.
“Once we were secure enough for him, we were going to help other kids,” Poe said, hoping that still happens one day. “I pray some big business will sponsor us.”
In Oakville, little Max’s story has a happy ending. While he continues to undergo therapies at blueballoon, the six-year-old is in Grade 1 and thrives with the help of an educational assistant. And during recess, he plays with his classmates and even “flirts with the girls,” said Carefoot, with a giggle.
His successes, she said, are a testament to the boy’s hard work and determination.
“When he is motivated and wants to do something, watch out,” said Carefoot.