Support Struggles
For Alberta families caring for a child with cerebral palsy (CP), Family Support for Children with Disabilities (FSCD) is the government program they turn to for financial support.
And although this highly-individualized program is seen as comprehensive and helpful for families, there are still some concerns surrounding the ability for all families to get the most out of it.
FSCD
According to the Government of Alberta’s website, FSCD “helps families plan, coordinate and access services to raise a child with disabilities,” and it is the main source of financial support for families caring for a child with CP.
To be eligible for FSCD, a child must receive a “diagnosis for a disability that is due to a developmental, physical, sensory, mental or neurological condition or impairment and/or health condition that impacts their daily living activities such as eating, grooming, walking, interacting with others, playing and problem solving.”
Though this is the basic eligibility criteria, there are additional criteria that need to be met depending on the amount and types of services families are looking to access.
Once a contract is signed, the FSCD program provides funding so that families can build a team of health professionals around them which, in the case of a child with CP, can include a physical therapist, a speech-language pathologist, an occupational therapist, a psychologist, a behavioural specialist and an aide. The program also provides flexibility by allowing parents to decide how involved in their child’s therapy they would like to be, and that decision can change over time with no repercussions.
Overall, FSCD stresses specialization and individualization to ensure the needs of each unique family is being met, something social worker Emily Jackson, who has a daughter with CP and receives support from FSCD, sees as mostly positive.
“ I think the whole reason behind [FSCD] is that they want families to stay together. They want parents to be raising these children and to stay in a cohesive family unit.
They don’t want families to be so stressed that there’s divorce or so stressed that children are put into foster care.
So, that’s something that this province does well, is that they attempt to support families enough that they stay as a family unit.”
— Emily Jackson
Individualization,
for better and for worse
However, the individualization of FSCD also means that each family has a different experience of going through the system, for better and for worse.
FSCD as a whole is extremely parent-led in that parents are responsible for helping to identify and access the services outlined in their contract, then they are required to pay for these services out of pocket before being reimbursed. This means that the FSCD process — from determining eligibility all the way to managing contracts and paying for services — requires a lot of parent advocacy, something that Abigail Aldridge, program coordinator for Families of Alberta for Conductive Education (FACE), says not all parents are equally capable of. This issue is exacerbated when families who struggle run into FSCD case workers who don’t provide necessary support.
Aldridge points out that unless families are made aware of what they can and can’t have under an FSCD contract, they often won’t know what to ask for “and often it’s heard that you won’t be told by your FSCD [case worker] what you are entitled to. Some maybe [they] will tell you, others may not, and this is often where the break is when we talk about funding, because it’s just very variable.”
Emily Jackson (second from right) with her family. Piper (second from left) has cerebral palsy and attends the conductive education program FACE. Photo provided by the Jackson family
Jackson adds that although there are documents that can help parents understand what they’re eligible for under FSCD, that is a lot to ask of parents to read these hefty documents as they are struggling to navigate the system.
“ Families don’t have time to go through a 300-page manual to make sure they’re getting all the support. So, they really rely on the worker that they’ve been assigned to actually take what they’re saying and turn that into hours and funding. ”
— Emily Jackson
Aldridge says that understanding FSCD is a problem not only for those who face things like language barriers, but even for those who are perfectly capable of advocating for themselves and their children.
“We do have a family here who have actually said to me: ‘you know, we’re both two very educated professionals… and even we struggled to understand some of the wording that comes in... I struggle for those families where English is their second language because we struggle to understand it.”
Laurel Sherret, president of Cerebral Palsy Kids and Families, and member of the FSCD Provincial Parents Advisory Committee, says that she hears these concerns and, as a parent of a child with CP who requires FSCD support, shares them.
“Often, and this is regardless of what system you’re dealing with, the families who need the most supports are often the least able to advocate for themselves, right?” she says. “So, they may be facing multiple barriers. They might be facing barriers related to education levels, language, cultural barriers [and] not understanding how to advocate for themselves in a system that operates with a lot of discretion.”
Laurel Sherret (far right) celebrates Christmas with her family. Her son Roshan (far left) has cerebral palsy and attends the conductive education program FACE. Photo provided by the Sherret family
These barriers, she says, means it’s crucial that families are offered the necessary information and support by their case worker, but admits that at the end of the day inconsistencies are bound to occur because “there’s a whole range of people out in the world and there’s a whole range of FSCD workers and how they approach it.”
Having experienced a much more institutionalized care system in the Netherlands, as opposed to Alberta’s highly-individualized system, Sherret says that although individualization can cause inconsistencies, she sees the benefit to the province’s way of doing things.
“The alternative to it in my mind is you switch over and everyone gets the same amount of money. You all get X number of dollars, you all go to the same service providers, right?” she says. “And I don't think people would be happy with that either. Administratively, you either allow for the flexibility and accept the risks, or you set everything in stone and end up with a system that's not going to have the ability to individually address the needs of people.”