If you are a caregiver of a person with a disability, or an adult living with a disability, then you know how challenging it can be to access services.
In London, the path to support often resembles a meandering game of Snakes and Ladders. Two spaces forward on the ladder, and then suddenly, you’ve slid three steps behind where you were in the first place.
That is often the case for people and caregivers living with FASD (Fetal Alcohol Spectrum Disorder) in London, Ontario. As part of a family supporting a teen with FASD, we have seen some minor signs of progress in service availability in the last few years. Is it enough? No, not even close. Are we catching up to cities in the western provinces? No. Are we close to doing as well as Waterloo Region? Not yet, either. Inconsistency in FASD supports in regions of Ontario is notable and shocking. Still, the progress being made in the Forest City is worth noticing.
What is Fetal Alcohol Spectrum Disorder?
As one of the most common causes of developmental disabilities in North America, FASD impacts all cultures and social levels. The disorder is caused by consuming alcohol when pregnant, impacting the developing fetus. In Canada, the latest research from CANFASD indicates the prevalence of FASD in the general population is 4%. It’s 2.5 times more common than Autism, and 28 times more common than Down’s Syndrome.
People with this diagnosis each have unique challenges and strengths. In fact, FASD comes with as many as 400 physical and psychological symptoms. FASD is a spectrum disorder and often an invisible disability.
Finding Support in London
“Honestly, I feel like we are doing better than we were five years ago,” says Natalie Davison, parent of a young adult with FASD. “I believe it is largely the tireless ongoing advocacy of caregivers and people with FASD finally being heard.”
“We now have FASD coordinators where we did not have them before. Provincial FASD workers give caregivers a starting point that was not there even five years ago,” adds Darlene Durand, Parent Advocate and Co-Founder of the Ontario FASD Action Network.
If I were an outsider approaching now and looking for services, I’d look to either the London Family Court Clinic or the Fetal Alcohol Spectrum Disorder Service Coordinators at the Community Services Coordination Network (CSCN).
CSCN’s mandate is to simplify access for individuals and their families to support and resources. Their FASD Coordinator’s role is to deliver child, youth, and family-centered service to those with FASD and/or suspected FASD and their caregivers , by developing a support plan. FASD Coordinators provide information, assist families in accessing services, and connect individuals to support networks and diagnostic services as available. FASD Service Coordinators will also help families locate FASD-related diagnostic services for a child or youth.
“The increase in supports for families in our city has truly come from the London Family Court Clinic (LFCC). Running bi-weekly support groups for caregivers, programs for children and teens, and coordinating a Peer Mentoring program for caregivers have all been amazing steps to creating a space for caregivers to feel like they are understood and supported. Having provincial FASD workers on board as well has given families a starting point on their journey, which was not there five years ago,” says Durand. “There is still lots of room in our city for other agencies to create programs, support, and understanding for FASD.”
Peer Support for Caregivers
LFCC offers programs and services tailored to the unique needs of families living with the effects of prenatal alcohol exposure (PAE)/ FASD. LFCC offers two free programs: Parent Connect & A Night Out. Parent Connect is a parent-parent peer mentoring program. It connects caregivers of children (of any age) with suspected or diagnosed Fetal Alcohol Spectrum Disorder (FASD) or a complex neurodevelopmental disorder to mentors and mentees. The purpose of the program is to connect caregivers with similar lived experiences to decrease social isolation. LFCC offers Parent Connect throughout Southwest Ontario. Participants are not required to travel to take part in the program.
A Night Out is a safe, supportive, and stigma-free environment for parents/caregivers raising children and youth with FASD. Evenings include engaging discussions, learning opportunities, and a chance to relax while children and youth engage in safe, interactive, developmentally appropriate sensory programming. The group is possible through a partnership with LFCC and Merrymount Children’s Centre. (Please note: A Night Out is currently offered virtually due to COVID-19).
Both Durand and Davison point to several online Facebook groups that are vital supports for caregivers. The private online groups are valuable for mentoring, awareness, and sharing resources to support families. Team Love – Connecting Families Living with FASD is local, private, and open to any caregiver supporting someone with FASD. OFAN (Ontario FASD Action Network) is an advocacy and awareness group with a provincial focus.
In November of 2019, after months of struggling, our family connected with LFCC and started attending their bi-weekly Parent Night Out evenings at Merrymount. There, we found support via peers and other caregivers as well as the mentoring program. My 16-year-old daughter, diagnosed with FASD, made friends with another teen living with the same invisible disability. She has found someone who is a peer who understands her disability well and can often say: “Hey, me too!” Sometimes, that is enough to get through the tough days.
You can contact CSCN at 1-519-438-4783 or toll-free at 1-877-480-2726 and ask for children’s intake.
For more information on either of the LFCC programs or diagnostic services, please call 519-878-FASD (3273) or email email@example.com
Feature photograph by Paula Schuck.