When Sue S. brought her infant daughter home from hospital 28 years ago, the Vancouver mom had no idea what laid ahead for her family.
Her daughter had been born seven weeks early, and the baby’s near-complete lack of muscle tone signalled that something wasn’t right. The occupational therapist who Sue met at the hospital had given her the phone number for the infant development team hosted by the Developmental Disabilities Association.
Sue made that call not long after arriving home, and the team’s home visits quickly became an important and valued part of the family’s new routine. But Sue worries that the level of support that her daughter benefitted from throughout her life is no longer a certainty for children growing up with disabilities in B.C.
There would be many more visits with many more intervention teams as young Anna grew up. She was eventually diagnosed with a rare genetic condition. And while the prognosis in those years was dismal for children with that condition, the support she and her family received made all the difference in helping Anna reach her potential.
“I put everyone who works in early childhood development on a pedestal, and they have stayed there,” says Sue, who went on to serve six years on the board of the B.C. Association of Child Development and Intervention. “All these people are absolutely key to a child realizing his or her developmental potential. They open the doors for families.”
Anna wasn’t diagnosed until she was nine months old, but the early intervention team started working with the family long before that.
“They were so helpful,” recalls Sue. “They gave our family hope. That’s the fantastic thing about early intervention – it’s something positive to focus on, and it gives value to the child and the family.”
Anna’s lack of muscle tone made it difficult for her to nurse or take a bottle. The team’s physiotherapist was there to stimulate Anna’s facial muscles, and later, to give the family simple exercises that they could do with Anna at home.
Once she could sit up on her own, an occupational therapist started visiting. At age three, the toddler was enrolled in B.C.’s At Home program, and funded to go to an integrated pre-school specializing in children with special needs. Sue says the services of a speech language pathologist in those early years was invaluable.
Progress was slow, but over time Anna’s abilities improved. She learned to walk when she was four. She was enrolled in an integrated elementary school, and later in a specialized class at her local high school. After finishing school, she was “very fortunate to be placed in a high-quality day program,” notes her mother. Anna continues to participate in that program.
She also got involved as a child in the Vancouver Parks Board swimming program “Adapted Aquatics” (and developed by a woman who Sue says is a marvel), and is still in it all these years later.
Still, Sue has watched with increasing alarm as the support in B.C. for services to children like Anna has diminished in recent years. Sue questions whether a young child these days receives the same level of support that her daughter received.
“Back then, we were funded to send Anna to a special preschool,” says Sue. “What happens now is a child is supported through the Infant Development Program up until age three, and then can sometimes fall off the radar until school age, particularly if they are not fortunate enough to attend a quality, licenced daycare or preschool program. I do think professional oversight is so important for ages 3-6.”
Sue adds that once children are school age, “funding is often lacking for actual specialist intervention, and is generally sufficient only for periodic assessments, recommendations and monitoring.”
Sue has a sister in England with two children with disabilities, and has observed with interest the differing levels of government-funded support that Anna and her sister’s children have received. When Anna was a child, there was no question that she was receiving more support than her cousins, says Sue. But now that the three children are adults, Sue has been struck in particular by the generous disability allowances in Britain.
“Our daughter was really very lucky,” says Sue. “I don’t think there is as much support now for young children in B.C. For a child to spend six months on a waitlist, for instance, is a terrible thing. We have to find a way to convince politicians and funders that investing generously in early childhood development and intervention is not only the humane and right thing to do, but is also fiscally responsible.”
How you can help: Learn more about child development and early intervention in British Columbia at www.bcacdi.org. The B.C. Association for Child Development and Intervention represents 30 agencies that deliver services to 15,000 children and youth.