Amy Perras’ eldest son has several disabilities, one of which is autism.
This makes him eligible for two provincial programs through which he receives $17,280 to help with his care.
In 2027, though, the Ministry of Children and Family Development is changing the programs – along with the criteria for funding – and Perras is worried her son’s funding will be reduced to $6,500.
Currently her 14-year-old son, Zennor, receives support from the province through the At Home Program, a program that is for children who have severe disabilities and who are dependent on others for multiple areas of their daily living – eating, dressing, toileting, and washing.
The program is for any child who meets the criteria, whether they have a physical disability, intellectual disability, or a combination of disabilities.
And through the School-Aged Extended Therapies, the At Home Program also provides certain medical benefits recommended by a regulated health care professional like: medically essential equipment and supplies; hearing aids; dental, optical and orthodontic services related to a disability; therapies for school-aged children; and medical transportation.
Her son also receives help through the Autism Funding Unit, specific to children on the autism spectrum to help with his skill development.
Both of these programs are set to end on March 31, 2027 and they are going to be replaced by the new Child and Youth Disability Benefit, for children with intensive needs, and the Disability Supplement, for those with more moderate needs. Neither of which are specific to children on the autism spectrum.
According to the BC government, the new programs are intended to be more equitable, improving access to supports and services for children and youth with support needs.
They will provide direct funding for children and youth from birth to age 19, who have a lifelong disability, resulting in significant and/or complex support needs.
Eligibility and funding amounts will be based on a child’s level of support needs – not their diagnosis or family income.
The base tier will be $6,500 and the higher tier, $17,000 of funding per year.
Perras noted that the highest tier is already $280 less than what is available to those in the current programs.
Her child is presently described as a child with the highest needs, however, Perras is worried that designation changes.
“He’s not in a wheelchair, he’s not tube fed, so, I agree that he does not have the highest needs in terms of medical requirements at this point in his life,” said the mom.
However, she noted, he does have a degenerative disease, which means he will need more help in the future.
Now, though, Perras said she is in the dark about what exactly the new criteria is for the new benefit.
Jodie Wickens, Minister of Children and Family Development said her ministry wants all children and youth to have access to the supports they need to live a full, happy life.
“I understand that change can create uncertainty and stress for some families, and as Minister, I am committed to supporting families every step of the way through this transition,” said Wickens, in an email to The News.
Wickens said her ministry has heard from families through extensive engagement with more than 5,000 participants, that the current system isn’t working for many children. She said too many receive no support at all and others are struggling to navigate a system that doesn’t reflect their child’s needs.
And, that is why they are investing $475 million over three years to expand the services and supports, she said.
Both of the new programs will support thousands of families whose children have never received support before, she explained, while increasing direct financial support for families of children with the highest needs across all diagnoses.
“We are also expanding community-based services across the province, so families can access the supports they need when and where they need them,” said the minister.
Abbotsford-Mission MLA Reann Gasper, the opposition’s Critic for Children and Family Development, said that if the ministry is reducing supports for autistic children who are considered higher functioning, then the provincial government should “significantly strengthen” mental health services in order to meet the increased risks that these young people will face.
“We will keep pushing for greater transparency, clearer implementation plans, ongoing monitoring of outcomes, and stronger investment in early intervention, child and youth mental health services, supports for parents, and crisis and suicide prevention,” she said in a letter on June 18 addressed to families and advocates of the autism community.
Perras is frustrated, because, she said, the only information she has received from the government until now has been online.
She has been assured that children currently in the At Home program will be automatically eligible for the new benefit.
However, Perras added, the ministry is not saying what tier those children will be eligible for.
“So, there are going to be more children with high needs losing funds,” she predicts.
And, if her child falls to the bottom tier, he will lose half of his current funding, which Perras is worried will still his progress to date, or even lead to regression.
Advocates have started a fundraiser for a legal opinion on whether they can put forward a legal challenge to the new government policy.
As of Friday, July 3, they had already raised $13,375 of a $15,500 goal.
Anyone wishing to donate can go to: https://www.gofundme.com/f/fair-autism-disability-funding-bc-legal-opinion-fund.