Study stokes fears B.C. kids with disabilities may be left behind by new system. Author of the article:Glenda Luymes
Publishing date:Feb 09, 2022
Glen Hoos remembers being denied provincial funding to support his son, who has several rare disabilities, after a “long, stressful” process.
The Burnaby dad of two kids with special needs is worried more B.C. parents could be denied coverage when the government moves to a new “community hub model” to support children and youth with developmental challenges.
Billed as a replacement to the “patchwork of programs” that currently exists in B.C., the new program, which was announced by the provincial government at the end of the October but won’t be fully launched until 2025, is aimed at making services more accessible in remote areas, opening them up to families waiting for a diagnosis, and providing supports based on need, not specific conditions.
The province said the new system will help about 8,300 more children and their families, a 28-per-cent increase.
“Many of their stated goals are things I support,” said Hoos, who is also the spokesperson for the Down Syndrome Resource Foundation. “The desire to make funding equal for all disabilities is positive, as is a desire for kids in all geographic areas to have the same access. But their proposed solution totally misses the mark.”
Under the current system, parents of children on the autism spectrum can access government money – up to $22,000 for kids under six and $6,000 for older children – to spend on supports such as behavioural interventionists, counsellors and speech therapists, among other approved services. Kids with other disabilities, such as Down syndrome, receive support through the At Home Program, which may not provide the same level of choice or may be denied coverage.
Hoos said many kids with significant needs, including about half of kids with Down syndrome, are denied when they apply for At Home funding and receive no financial support for therapies.
“That has left some parents sitting on the sidelines saying my kid needs what those kids have,” explained Hoos, whose 17-year-old daughter has autism and Down syndrome.
But the disability advocate also recognized that individual plans, such as those favoured by many in the autism community, may have limitations. Some families struggle to organize and coordinate their own plan to support their child, while some B.C. communities don’t have the services they need.
“I think the best solution might be some kind of hybrid model with direct funding, plus hubs in areas where people have nowhere to go,” he said.
The Down Syndrome Resource Foundation is also concerned that the quality of support programs could suffer under a new regime. The charity provides services that are tailored to children with Down syndrome. Staff are concerned that provincial hubs, which “by definition do not specialize in any particular disability,” may lead to a reduction in the quality of programming available to families.
The complex consequences of completely overhauling the B.C. system for kids with developmental challenges does not seem to have been adequately considered by the provincial government, said Pat Mirenda, a professor emeritus with the University of B.C.
“The underlying problem is that we have very little information on service eligibility, and how much service eligible kids will get,” she said. “It’s a black box.”
In briefings with impacted groups, the Ministry of Children and Family Development indicated it would be using two assessment tools, said Mirenda. An Australian study from 2019 found that using one of the tools to determine needs disqualified 25 per cent of children whose pediatricians had referred them for assessment. Using the other tool, four per cent of children were disqualified.
Mirenda said using the tools could have negative impacts on B.C. children with “less disabling conditions,” such as ADHD, fetal alcohol syndrome, or mild autism or Down syndrome.
The professor, who is a member of the B.C. Disability Collective, said she was hopeful the B.C. government was trying to improve the system when it announced the changes, but the “execution has been unbelievably bad.”
In a statement, the Ministry of Children and Families said the assessment tools would not be used in the intake process and would only be administered by Masters-level clinicians with appropriate training if “access to disability services is required, such as respite and professional supports.”
“Family connections centres will deliver supports and services based on the needs and goals of the child and youth with support needs and their families,” said the statement. “The assessment of a child/youth’s needs is not a re-assessment of a child’s diagnosis, but rather an understanding of the child or youth’s current strengths, abilities, developmental needs and goals, which can change over time.
“We are committed to reducing barriers to access, including the barriers that can exist for families whose children do not have a formal diagnosis.”
In November, B.C. Liberal and Green MLAs read out several letters from parents of children with autism in the B.C. legislature.
“Every parent has mentioned the stress, anxiety and trauma caused by this announcement, and many, many tears have been shed,” wrote Cynthia Lockrey, the parent of an autistic child.
“This framework is very patronizing, and it fails to recognize the strength that families bring to the table. I am very capable of managing my grandson’s autism programs,” wrote Carla Christman, an Aboriginal mother of two neurodiverse children and a grandmother of two neurodiverse grandsons.
In a statement at the end of November, Representative for Children and Youth Jennifer Charlesworth said that while she supports the “long-term direction” of the framework, solutions are urgently needed. She also had questions about how the proposed service hubs will be rolled out and how they will serve families who do not live in a hub community.
“And how will this plan support Indigenous communities to either develop their own robust array of supports or ensure that they are well-served and have access to culturally attuned and safer supports within community hubs?” she asked.
She also recognized the concerns of autism advocates and parents who fear a move away from individualized funding will erode services.
“Better and ongoing communication and engagement by (the children’s ministry) with parents and advocates of all children with support needs is needed to ease those concerns,” she said.
Original at https://vancouversun.com/news/local-news/parents-say-new-model-to-support-b-c-kids-with-disabilities-misses-the-mark#:~:text=failed%20to%20load.-,Parents%20say%20new%20model%20to%20support%20B.C.%20kids%20with%20disabilities,the%20mark’%20Back%20to%20video&text=The%20province%20said%20the%20new,28%2Dper%2Dcent%20increase.