Some kids ignored amid autism debate, parents say
Those with other disabilities receive little provincial funding and face wait lists for therapy
Toronto mother Sarah Miller was awestruck by the hundreds of parents who rallied at Queen’s Park last week to protest provincial autism program changes.
Her daughter Ayela, 5, who does not have autism but who struggles with physical, communication and learning disabilities due to a rare genetic disorder, has never received government funding for therapy.
“If there was ever a time to raise our issue, it is now,” Miller said in an interview. “We should be supporting all children with disabilities to reach their full potential.”
Under autism program changes announced Feb. 6, Lisa MacLeod, minister for children, community and social services, vowed to eliminate the autism therapy wait list of 23,000 children over the next 18 months by giving families “childhood budgets” to choose the services they want.
An estimated 40,000 Ontario children with autism will be eligible for up to $20,000 a year for kids under age 6 — with a lifetime maximum of $140,000.
Older children can access up to $5,000 a year up to age18, to a lifetime maximum of $55,000.
However, autistic children with severe needs can require therapy that costs up to $80,000 a year, meaning thousands now receiving funding are facing drastic cuts. Meanwhile, school boards say they are not equipped to deal with the fallout when the new program begins April 1. To help schools cope with the expected influx of kids with autism, Education Minister Lisa Thompson announced Monday that the government would provide schools about $12,300 per new student.
But as parents, therapists and school boards focus on the crisis facing children with autism, the Ontario Disability Coalition estimates another 25,000 kids like Ayela continue to be ignored.
“There’s this whole group of kids with disabilities that are not included in any kind of (therapy) funding program,” said Miller, one of about 1,400 members of the parent advocacy coalition. “It’s not to say that autism shouldn’t be funded, but that the program should be broader.”
Special Services at Home (SSAH), a provincial program that provides an average of $3,600 a year to help children with disabilities — including kids with autism — learn new skills and provide parents with respite, is the only funding families like Ayela’s get.
About 28,000 children receive funding of up to $11,500 under the $95-million program, according to provincial officials.
But there is always a wait-list — and no urgency on the part of government to address it, families say. Officials did not release a current wait-list number, however in 2014, there were 8,000 children waiting for funding under the program.
And unlike families whose children have autism, these parents have no access to government funding to pay for private therapy. Instead, they are forced to rely on a patchwork of short-term publicly funded services also plagued by wait lists.
Miller and her husband, Howlan Mullally, who also have a 17-month-old baby without disabilities, receive $3,500 a year in SSAH funding for Ayela, which they use for respite and a community gymnastics program to help with her social skills.
The family pays $160 for an hour of speech therapy every week, but can’t afford regular physiotherapy and occupational therapy due to costs that run between $125 and $135 an hour for each services. The couple is grateful to the Canadian Music Therapy Trust Fund for subsiding weekly music therapy classes for Ayela that cost $160 for 10 lessons.
“Special Services at Home is the only source of funding my family receives and we rely on it,” Miller said. “Is this the next program to be cut back? A lot of families are very concerned about this.” Annual funding for SSAH runs out at the end of March. A ministry spokesperson said families would have to wait until after the provincial budget on April 11 for information about funding renewals.
Richmond Hill mother Sherry Caldwell, who was inspired by the activism of parents of autistic kids, founded the Ontario Disability Coalition in 2017. The group believes all children with disabilities should have access to therapy and that families should be able to choose direct funding or direct service from the government.
“Our kids deserve help to reach their potential, too,” said Caldwell, whose daughter Ashley, 13, is non-verbal and uses a wheelchair for mobility and a feeding tube for liquids.
“We know helping kids early, as they are growing, is going to reduce costs later. Some of them can even become contributing, taxpaying members of society,” she said. “I have big dreams for my daughter. She needs a purpose and a meaningful life. These kids should not be written off and forgotten.”
Although she knows Ashley needs occupational and speech therapy, Caldwell and her husband — who have three other children, including a son in university — can only afford weekly physiotherapy sessions at $120 an hour.
The coalition, which met with senior staff in MacLeod’s office in the fall, wants the government to “stop discriminating based on diagnosis” and to include all children with physical and development disabilities in a single, inclusive policy.
Mississauga mother Rachelle Manios’ daughter Tayla, 9, has a developmental disability and a cognitive age of about 18 months. She cannot speak or understand spoken language, has seizures, and is still in diapers. Her family spent about $20,000 a year for three hours a week of physiotherapy, speech and occupational therapy for Tayla until she started school. The family would have liked to have continued the therapy, but without government help, can’t afford it.
Manios says she is “actually grateful” provincial changes to autism funding have caused such an uproar. “It is allowing us to ask about our kids, too,” she said. “The conversation is happening, which is what we have been asking for, for years.”