Government commits to disability funding

By Laureen F. Guenther Times Contributor

Since Alberta elected a new provincial government, some families and individuals affected by disability have expressed concern that the funding they depend on was being reduced, denied or delayed.
But Alberta’s Ministry of Community and Social Services has promised that FSCD (Family Support for Children with Disabilities) and PDD (Persons with Developmental Disabilities) funding continues to be available as it was before.
“The FSCD program helps families plan, coordinate and access services to raise a child with disabilities,” said Kassandra Kitz, press secretary with the ministry.
“The PDD program is designed to help adults with developmental disabilities to get services to live as independently as possible in their communities. Overall, these programs work to support vulnerable Albertans with disabilities and enable them to live full lives with dignity.”
As of July 2019, about 13,000 individuals receive PDD funding, Kitz said.
About 15,000 families receive FSCD funding. One of those is the family of Strathmore resident Stacey Kinley, whose four-year-old daughter has neurofibromatosis type 1, or NF1.
NF1 has a wide array of symptoms, and they’re unique for every person. For Kinley’s little girl, the first concern appeared when she had a seizure at only two days old. When she was three months old, her parents started noticing facial asymmetry.
Today, the four-year-old has seizures every day, usually many times a day. She has challenges with vision, speech, walking, learning and behaviour. She’s had brain surgery and two eye surgeries.
Regular medical trips to Toronto started when Kinley’s daughter was two. The youngster is regularly assessed by neurology, oncology, vision and genetics clinics. She is on anti-seizure medication; if she gets ill and can’t keep her medications down, her everyday symptoms intensify, and she needs to be hospitalized.
The family’s FSCD funding includes partial coverage of her seizure medication, funding for respite caregivers, and parking and mileage during hospital stays. But other families who receive FSCD funding will have different contracts.
“It’s based on your need,” Kinley said, “how it has affected your life.”
Kinley, whose family now lives on one income because their daughter is too medically complex to be placed in daycare, sees the impact of that funding.
FSCD might pay $20 a month as partial medication coverage, for example, and for some families it could make a great difference if that were withdrawn, she said.
“That’s $20 a month that you’re not putting into groceries,” she said. “When our budget was a lot less, we aimed on $13 a day to feed our family. So, when you’re doing $13 a day to feed your family, and you’ve taken away one day to feed your family (to pay for your child’s medication) … that could be significant for some families. You’re going to have a mom or a dad that’s going without eating a couple of meals.”
For Kinley’s daughter, the FSCD funding allowed the family to free up some money in their budget to obtain other specialized help, such as an early intervention program that helped address her learning delays, and braces and a walker when she was learning to walk.
Kinley said she is grateful they “lucked out” with a great caseworker, and that FSCD has always provided the funds they qualified for.
“Anytime that we needed extra funds for meds or parking or whichever, or whenever our funds ran out, I would just contact my caseworker, and she would do an addendum and send it to me to sign, and typically always had funds available.”
But recently some concerns arose. Kinley was informed that, temporarily at least, her contract could not be amended.
“My daughter’s meds increased; they’re almost doubled,” she said. “Once our funds are used up, for what was approved on our contract for the beginning of this year, there is a hold on anything (extra). We are just really hoping to be able to cover her medication and any long-term stays in the hospital, such as parking and extra mileage.
“I just can’t imagine families that are really struggling to begin, like we were in the beginning, not having as much help as possible,” Kinley added. “Medical expenses for most are not black and white. They are always changing, and families need to have that flexibility.”
Kitz said the Alberta government values these programs, and there have been no caps or freezes on funds.
“Our government believes that Albertans with disabilities deserve to live a full life with dignity,” said Kitz. “The FSCD and PDD programs are important resources for individuals with a disability and their families. Eligibility and funding for the FSCD program have not changed. New service agreements and renewals for families accessing FSCD continue to be processed.”
Kitz said families who receive FSCD supports meet annually with their caseworkers to assess the family’s needs. If a family’s needs change during the year, their agreement can always be amended.
Anyone who has a concern about their specific FSCD or PDD case is encouraged to contact their caseworker, Kitz said. They may also call the ministry at 310-0000.