Support for people with Down syndrome in NL has improved, but more can be done.
Inclusion of people with disabilities has steadily become better in Newfoundland and Labrador society, yet work is still needed to ensure equal opportunity.
Stories of families leaving the island because they perceive a lack of opportunities for their children with Down syndrome are too common.
Rob Harvey is chair of the Newfoundland and Labrador Down Syndrome Society. He emphasizes the value of therapies and explains how more services would help people with Down syndrome.
“I understand that government and health care have many demands placed on them and we’re one of many,” said Harvey, “but I also feel that we’re in a position that we’ve seen benefits from the services that we offer and with some, I guess, additional supports and consistencies we feel that there’s many more that can benefit from it.”
According to the Canadian Down Syndrome Society, about 45,000 people in Canada have Down syndrome.
Sheila Bradbury from St. John’s is one of them. Her and her parents spent much of the last 15 years in Senegal, but have been back and forth to Newfoundland.
Sheila’s mother, Paula Bradbury, says support offered in school has certainly improved since her daughter, who is 32, graduated, but agrees there’s still lots that can be done better.
“It’s no good to say we’re including the kids in a regular classroom or in a regular school if they don’t have the supports within that system to make sure that they can reach their full potential,” said Bradbury.
Two of the biggest challenges, says Harvey, are geography and consistency, because which services someone receives depends greatly on where they live and which school they attend.
“Once somebody finishes within the school system, then those services stop and there really is nothing in terms of therapy services, speech, music, those types of services, that would be available to them outside of what our society offers.”
The Developmental and Rehabilitation Division at the Janeway offers different therapies before children enter school. However, it’s difficult for people in remote communities to use those services, since that requires travel or even a move to St. John’s.
“I would like to see more consistency in the ability for people to access and receive those services,” said Harvey.
Consistency, he says, has to be across the province.
The school takes over most of these support services when children enter the school system. As soon as school is finished, so are the services.
“Once they enter the school system, it’s still not consistent and then once somebody finishes within the school system, then those services stop and there really is nothing in terms of therapy services, speech, music, those types of services, that would be available to them outside of what our society offers,” said Harvey.
“She’s advanced enough to know what’s different from other people. And she’s advanced enough to know that it’s normal for adults to be working and that’s what she wants.”
The society provides services such as occupational or speech language therapy.
“The needs are still there, even after they finish high school, so as young adults and into their thirties, they continue to avail of these services because they’re not available through the traditional health care system,” said Harvey.
Since the society is the only non-governmental agency of its kind in the province, support that can be given is limited, especially in terms of reaching people outside of St. John’s.
Bradbury agrees there is room for improvement. She wants to see change in the availability of jobs for adults with Down syndrome. Sheila sometimes works at the Button Shop run by The Vera Perlin Society, which offers employment opportunities for people with developmental disabilities.
“She was so excited. She called her grandparents, and she called her aunt, and she called her siblings to let them know ‘I’m going to work tomorrow, I’m going to work tomorrow’. She was just so excited to have that opportunity.”
“She’s advanced enough to know what’s different from other people. And she’s advanced enough to know that it’s normal for adults to be working and that’s what she wants,” said Bradbury.
Bradbury understands there are financial barriers to hiring a person with Down syndrome. The employer has to pay the salary for the person. Workers such as her daughter also require a government-funded job coach to assist them during their training or even for the entire period of the employment.
Still, Bradbury also wants to emphasize the positive support Sheila has received from different sources in the province, such as Rainbow Riders, Special Olympics or Recreational Respite. And of course the job at the Button Shop, which only two weeks ago called her in for a shift.
“She was so excited,” said Bradbury. “She called her grandparents, and she called her aunt, and she called her siblings to let them know ‘I’m going to work tomorrow, I’m going to work tomorrow’. She was just so excited to have that opportunity.”