Child who doesn't speak waits 2½ years for therapy

Kathy Tomlinson
CBC News
 The parents of a four-year old autistic boy who hasn't spoken a word are going public about waiting 2½ “incredibly frustrating” years to get him into speech therapy.

“From his initial referral to speech to his first appointment, it was 920 days — of waiting,” said mom Christine Long.

She was then told the intensive, daily therapy her son needs still isn't available in the public system.

“It feels like Finn has had it so hard his whole life. He just needs the help — and it should be there for him.”

Christine and husband Chris Long are from Surrey, in B.C., where the provincial government claims it has a “no wait list policy” for autistic children like Finn.

In reality, that means parents of preschool children get $22,000 per year to spend on therapy, without delay, when their child is diagnosed.

Wait list reality

However, there are still long public waiting lists, for the actual assessments and therapies. There are even wait lists for independent, privately run services, which can also be very expensive.

Chris and Christine Long say waiting and fighting to get therapy for their son has been incredibly frustrating.

In Finn's case, the Longs say hiring a private speech therapist to work with him daily would cost approximately $4,000 a month. That is twice what they get from the government.

“He wasn't that behind at 14 months...but at almost four — not being able to say a single word — he is incredibly behind,” said Christine. “He’s at preschool. He can’t speak to the other children.”

The Longs say they spend all of their annual funding on essential behaviour therapy, which already costs $2,000 a month.

Doctors say the little boy needs help urgently.

"We strongly recommend that he receive intensive speech and language therapy," Finn's specialists from the department of medical genetics at UBC wrote in December.

His mother said she's left trying to teach him to communicate on her own, as best she can. Her latest goal is to teach Finn to blow out candles on his fourth birthday cake this month.

“It’s just something that a lot of people take for granted — is their kid blowing out their birthday candles,” said Christine. “It’s so hard … and it hurts.”

“It’s mind boggling. It’s so frustrating,” said dad Chris, who said he works long hours to support the family on a modest income, so his wife can stay home to help Finn.

“Give him the services now — so that way, when he’s six, eight, 10 years old, we can see the results.”

Many children waiting

Several parents agreed precious months and years are being wasted while their children fall behind.

“I'd love to chime in about the wait lists for speech [and other therapies]. It has been horrific!” wrote Melissa Haughian Piva, on a Facebook thread posted by Christine, asking other parents for their stories.

“I know every single parent I have spoken to also has a story about their fight and lack of help,” wrote Janis Cox, also from Surrey. “It was too hard to watch Jake without therapy and help so desperately needed.”

Provincial figures show the median wait time — just for initial assessment — is 31 weeks. That's much better than 10 years ago, when children waited up to two years.

“We have more and more kids needing the services,” said Stephanie Cadieux, B.C.’s minister of children and families, who is responsible for autism programs. Six-hundred children were getting treatment a decade ago, she said, while 8,400 need it today.

Cadieux acknowledged the problems, though, and said she's working on improvements.

"I understand the challenge for families in the way the system works," she said. "We need to make sure that they are not waiting."

Parents report years of cumulative delays — for referrals, then assessments, then reports, and finally therapy. They also say the system — where services are contracted out to privately run service providers — is inefficient and bureaucratic.

"Arielle is still on the wait list for speech therapy, which I originally put her on at 20 months old," wrote Surrey mom Ashleigh Gordon.

"They cannot even give me an answer as to how much longer we'll be waiting. She'll be four in June — and still has no words."

Jo-Ann Reitzel, clinical director of the autism spectrum disorders service at McMaster Children's Hospital in Hamilton, Ont., said half of autistic children actually don't need IBI, but should have other options.

"How can we match up right child to right treatment at right time?" she asked. "We need to be able to open up opportunities for them to have therapy alongside their early childhood educations."

Estimates are that one in 94 Canadian children are autistic.

Finn Long’s mother is so desperate she is planning to study to become an autism speech therapist, so she can treat her son herself.

"We can’t take out a loan for his therapy, but we can take out a loan for me to go to school," she said. "I’ll do it. But it’s not right. And my only hope is I will be able to help other kids at the end of it."

As a result of Go Public's inquiries, the B.C. minister responsible is now scheduled to meet with the Long family, and is promising action.

"Any situation where there has been a two-year wait, I think, is too long — and I’d like to look into it," said Cadieux.

Seniors’ day is no substitute for real support

By David Hay

Seniors aren’t problems to be managed and aging is not an illness. But too often we talk about older British Columbians that way, in terms both inaccurate and demeaning.

There are certainly challenges in growing older. But nothing happens at 65 that suddenly makes someone less of a person.

Seniors contribute a great deal. Like everyone else, they work, volunteer, support family members, nurture friendships, pursue hobbies and interests, and participate in community life.

In B.C., more than 10,000 children are being raised by their grandparents with not a lot of support — a great challenge and contribution.

Yes, many British Columbians require society’s support as they age. But so do people of all ages — families needing daycare, university students needing bursaries, commuters needing good roads and everyone needing health care.

Yet, somehow, support for seniors tends to be viewed as a special burden.

Admittedly, demographics create some challenges. In 2001, there were 135,000 British Columbians over 80 years of age. By 2011, there were 197,000, a 46% increase in 10 years. Similar increases lie ahead; by 2036, one in four of us will be over 65.

While we talk about supporting people as they age, we aren’t delivering. The B.C. Ombudsperson reported last year that the number of publicly subsidized residential care beds increased by 3.4% between 2002 and 2010. Meanwhile, the population over 80 — the main client base — increased by 34%. (Home support services also failed to keep up with the growth in the over-80 population.)

Those of us in the community social services sector know it is a mistake to think seniors’ needs revolve around health care, as if aging is an illness.

Families do great work helping their elders but not every senior has family members nearby, and often, professional skills are required.

That’s when the agencies that employ thousands of expert, dedicated people in the community social services sector take over. They support seniors in their homes. They help with shopping and meals. They provide physiotherapy, and counselling on everything from medications and health to emotional issues.

Our work produces pragmatic benefits. For example, while it costs $72,000 a year to provide residential care (shared between seniors and government), a few hours a week of home support can help people stay independent at a fraction of that expense. Community support is the best way to reduce demands on the health care system.

But really, this is about doing what’s right. Seniors should be supported in their desire to live full, rich lives, and to contribute.

Our commitment also has to extend to the professional, dedicated people who provide the support. The number of seniors has been increasing but government support has not kept up. Frontline workers have been increasingly stressed and stretched, and seniors have suffered from reduced care.

It’s good that we recognize our elders through National Seniors Day on Oct. 1.

But seniors don’t really need a day or a press release. They need a citizenry and a government that treat them as valued people, not problems. When that happens, every day will be seniors’ day. And we will be a stronger society.

David Hay is the executive director of the Federation of Community Social Services of BC.

Vigils are important, but not nearly enough

By Shabna Ali and Tracy Porteous

The candlelight vigils that take place on every Dec. 6 to remember and honour the 14 women students murdered at École Polytechnique in Montreal are important and moving because they honour all those women and women and children victimized every year, everywhere.

But the day isn’t solely about remembering.  It’s called the Day of Action and Remembrance on Violence Against Women and Children. 

However in BC, there has been far too little action. 

Violence against women and children takes a terrible toll.  In BC, almost 100 women were killed by their spouses between 2003 and 2011.  (These numbers don’t include the murdered and missing women from Vancouver’s Downtown Eastside, B.C.’s Highway 16 or the many communities coping with the epidemic of violence against women.) 

Almost 60,000 women experience sexual and physical violence each year in BC.

Having a day to remember isn’t nearly enough.  We need committed leadership.  We need people who speak up when they see women disrespected and people to step in when they see injustice.  We need to choose the kind of society we want to live in and hold leaders accountable. 

In September, Victoria’s police department withdrew critical resources from a regional domestic violence unit created as a result of recommendations from an inquest into a horrific mass murder in Oak Bay in 2007.  This unit is being considered a “luxury,” the department said. 

In the last two years, reports by the Child and Youth Representative of BC, the Justice Institute of BC and others found that not enough is being done in our Province to ensure women and their kids are kept safe from violence.

Programs in BC have faced budget cuts that prevented them from providing help that could keep women and children safe from violence, and help them recover.

On Nov. 11, 2011, 124 transition houses, second stage, safe home and children who witness abuse programs participated in a one-day census conducted by the BC Society of Transition Houses.  On this single day, these programs helped 1,110 women and children in person, and another 1,461 via phone or email.  But they turned away 658 women, youth and children.  Other community victim services, counselling and outreach programs connected to the Ending Violence Association of BC are having the same problem.  There just isn’t enough funding in place to respond.

Community services make a huge difference every day.  It is simply wrong when they are prevented from providing help and support that can save lives.  

In BC, high-profile tragedies bring a flurry of activity and announcements related to violence against women and children.  But what’s needed is a continuing, well-planned and adequately funded set of supports and prevention services shaped by communities.

British Columbians need to hear from leaders at all levels of government about their specific plans to address violence against woman and children.  A provincial election is coming.  Please make your voice heard.  

We will continue to remember and honour those who have fallen to violence.  But it is time for action.

Shabna Ali is executive director of the B.C. Society of Transition Houses and Tracy Porteous is executive director of the Ending Violence Association of B.C.