Ontario Disability Coalition says children being left behind

Parents of kids with complex disabilities say province is shortchanging them

Yorkregion.com
Dec. 20, 2017
By Kim Zarzour

Sherry Caldwell knows that when people see her daughter in her wheelchair, they assume the health care system is taking care of her.

This is Canada, after all, where universal health care is a source of national pride, and "no child is left behind."

But Ashley was born with Chromosome 14 q Deletion Syndrome, a complex genetic disorder, and as a result, Caldwell said, Ashley is being left behind.

Because her disabilities are complex, Ashley does not receive ongoing therapy. Instead, the province provides a "consultative" method of therapy, which means Ashley must learn to walk on her own with her mother's assistance. Therapy is provided in short treatment blocks only, when it is critical - following surgery, for example, or by consultations with the child's teachers and parents.

And so, each day, Caldwell works with Ashley to develop her tight muscles and balance by holding on to the walls of their Richmond Hill home. It is a slow, laborious process. When they can afford to do so, they purchase private therapy.

Once she has learned how to walk five steps, then she can access provincially funded physiotherapy.

"Kids need more help than that," Caldwell said. "We parents have jobs, other kids, dinner to cook. We're not trained physiotherapists. You need a master's degree for that level of expertise."

Caldwell said Ontario's health care system discriminates against families like hers, which is why she has co-founded a coalition to fight "the great disability divide," lobbying for equal treatment for all disabled children and youth.

The Ontario Disability Coalition is petitioning the province to allow families to control funding allocated to them — in the same way those with Autism Spectrum Disorder can.

On Dec. 7, Michael Coteau, minister for children and youth services, announced a $500-million investment in the autism program and a new direct-funding option to give families a choice between receiving direct service or receiving funding to purchase private therapy.

Ontario Disability Coalition questions why the government won't provide that direct funding option to all children with disabilities.

Families have been refused services because their children are not considered disabled enough or too disabled, while those whose disabilities fall somewhere in between receive insufficient and sporadic services from the Children's Treatment Centres, Caldwell said.

Years of fighting for service or languishing on waiting lists have left them physically and financially exhausted, she said.

Some have waited so long for provincial funding for wheelchairs that their children have outgrown them; others were diagnosed at birth but are still waiting in their teenaged years for "early intervention."

"One of our members advised us that her son was discharged because he was too disabled to treat, and would have to stay in his wheelchair," said Lynda Reusse, a Thornhill parent and coalition co-founder. "They took advice from a developmental pediatrician at Sick Kids and paid for private therapy. Now the child is walking."

"Therapy can also mean preventing bed sores, preventing contractures, preventing or delaying orthopedic surgeries," said Samadhi Mora Severino, a PhD student in health policy and equity at York University and parent of a medically complex/fragile child. "It could mean a child could sit on their own, or stand, or communicate with the world, maybe to lead a life without pain or very little pain."

A coalition survey found 80 per cent of families who responded are unsatisfied with availability of publicly funded therapy and, among those who do access the therapy, 65 per cent are unsatisfied with the quality.

York Region is among the most poorly served, Caldwell said, with $1,786 per child directed to the York/Simcoe Region Children's Treatment Centre, compared to treatment centres in other regions that received an average $3,833.

Keswick's Brandon Colatosti is in Grade 10 and has a rare form of muscular dystrophy that is incurable. He relies on a power chair now, but believes if he had received more therapy he would have delayed the progression of the disease, letting him walk longer, and letting him use the regular wheelchair longer.

Instead, he had one session a month where his mom, Nina, worked on her hands and knees to help him walk — and when the province learned of the progressive diagnosis, that therapy was cut off.

Like most parents with severely disabled kids, Colatosti said she had to give up her job to care for him.

Brandon dreams of studying political science at Carleton in two years. His disability may not be curable, but that doesn't mean they should write him off, Colatosti said.

"Even if a kid can't walk, he needs to get out of the chair and be mobile, for bowel obstruction and heart issues. And just because he is in a chair does not mean he can't be a contributor to society."

The Ministry of Children and Youth Services said the government provided a variety of services to disabled children in 2016-17 including more than 61,000 receiving preschool speech and language services, more than 81,000 receiving services from Children's Treatment Centres and more than 55,000 students receiving rehabilitation services in schools.

"Families caring for children and youth with special needs face unique challenges. We are determined to help provide them with the support they need," the ministry said in an emailed statement. "Through our Special Needs Strategy, we are working to develop a more co-ordinated system … The goal is to help children and youth receive timely and effective services."

But Caldwell says parents have lost hope with the Special Needs Strategy.

"Direct, hands-on therapy is what reduces our children's pain and improves the quality of their lives … The funding needs to go directly to the families to get the expert help that they need."