The parents around the table are madly scribbling on their worksheets. It’s early on a Thursday morning, and the small group has gathered, as it does every week, starting with coffee and pastry and a little conversation. This week is different however, with a special facilitator holding court. The Parents Support Group is transforming itself — becoming a society, and, for the first time, trying to articulate a vision and come up with a set of concrete goals.

Rick Moyse, the man in charge today, has come from Edmonton on behalf of the provincial government to help with the process. Moyse has asked every group member to jot down some general ideas for a mission statement. 

“What do you do?” he asks. “Who do you do it for, and how do you do it?” The gathering is not short of ideas, despite the hour. Quickly, a list is up, and the debate is on.

Beginning to answer those fundamental questions posed by Moyse requires a short trip backwards in time. The Jasper Parents Support Group was founded five years ago as an outlet for parents and caregivers of children with special needs. Lynda Krawec, who has been a member of the group since the beginning, recalls how it all started for her.

“I was looking for support as soon as I got my daughter’s diagnosis,” she recalls. Although groups with a similar intention had been proposed in the past, it took the efforts of former Jasperite Lisa Scalapino to motivate the creation of a successful group of parents.

“A couple of us started it up, and it very slowly grew,” Krawec says. “At that point, it was more of a support group ... some felt that the only way to be supported was to be supportive.”

It wasn’t long before those involved had moved the group beyond providing a chance for parents to commiserate and share resources. 

“Within the first year, somebody brought up the idea of hippotherapy, therapeutic riding,” Krawec says. “And just by chance, a therapeutic riding instructor moved to town — it was fate.”

The group now organizes a host of activities and skill development opportunities for local children. The group runs respite camps during school breaks, and brings in trained instructors to teach art and help with practicing fine motor skills. It’s the only way to provide the kind of programming that might be readily available in larger centres.

“If you were living in Edmonton, you could put your child in an autistic playgroup, for example,” says Carla Gallop, the community outreach worker who acts as the facilitator for the group. “Here, we provide that.”

The group has no intention of altering its basic focus, on the children and the families who have to live with their special needs requirements on a day-to-day basis.

“Ultimately, you do this for yourselves and your families,” Gallop tells the group. “That’s not going to change. That’s why you got together in the first place.”

That said, the group is on its way to being incorporated as a society, and has changed its name to Parents for Special Needs Children- Jasper (PSNC-J). The major difference between what the organization is now and what it will be is adminstrative, Gallop says.

“The biggest change will be that we’ll have to call a meeting to order and get a regular report from treasurers.” 

The other important impact is a financial one. As a society, PSNC-J will be able to issue tax receipts to donors, a major plus in the competitive world of fundraising and grant-earning. 

Any edge in the fundraising game is especially helpful for a group like PSNC-J. 

“We don’t have time for fundraising,” says Lynda Krawec. “It’s too busy for us with our kids.”

The journey towards society-hood has also been reinforcing the important role the group plays in the minds of its members. As Moyse transcribes the group’s responses to the question about what they did, various statements of exclamation are made around the table. Having been so close to the activities they organize and the work that they do, the group members are surprised by just how much they are involved in.

“It certainly has educated me,” Krawec says after the meeting wraps up. “Even today, I had no idea how much we actually do.”

Put into the most basic of terms, the group does a lot because there is a lot to do. Parents and families of children with special needs face a whole host of issues, ones that don’t magically disappear with the ringing of the school bell. There is not one area of concern that can be identified as a priority for all members of the group. The pre-eminent issues vary from situation to situation.

“It depends,” says Krawec. “For some people it’s the attitude of the public, for others it’s the situation in the schools, and for others it is the waiting lists.”

In order to be coded, or officially designated as having a special need, children need to get assessed — in Edmonton. Parents can wait for months before getting an appointment, and then face another lengthy delay before receiving any results. If and when they are coded, the funding for in-school support still falls well short of being acceptable, according to the chorus of voices around the table. They tell of teacher’s aides having to split time, overwhelmed and underqualified to deal with the students they are placed with. They speak of their concerns about children gaining regular employment in Jasper, or even having the opportunity to live here independent of their families.

The range of difficulties, and the seeming incapacity to effectively deal with them at a local level, nearly forced the parents’ group to take their message to the province directly.

“We were ready to go to Edmonton,” Gallop recalls. Instead, the group took a step back and started working towards society status.

“It’s slowed us down but it will make us more effective when we do go in,” Gallop says. “Instead of having a personal story, we’ll be able to say across the region, here’s what people and families are experiencing.”

To achieve that regional view, the group has been reaching out to parents in Hinton, Edson and Grande Cache. 

“We want to see if they have the same issues,” says Gallop. “We want to see what they have done.” Groups like PSNC-J do not exist in these communities for the time being but parents have been invited to the Jasper meetings. Building a relationship between the communities could help in building a critical mass in order to make a more profound impact.

“There’s strength in numbers,” Gallop says. “To effect change in the GYRD, its better to have people from all over the region.” 

The school division recognizes that there are serious issues regarding the provision of services for children with special needs in such a rural area.

“The big challenge for the entire division is the difficulty with accessing occupational theraphy and speech and language services,” says Jan Ruhl, the Assistant Superintendant for Learning Services, from her Hinton office. “There are challenges that arise as a result from guidelines that are in place from Alberta Education. One is the frequency of assessments ... teachers are also looking for programming guidance. It all relates back to the inability to access services.”

Since last September, the GYRD has been using consultants and psychologists from Edmonton on an as-needed basis, rather than having their own in-house operators. This came about due to staffing changes, and not a funding shortage, but the new arrangement is more cost effective, Ruhl says, adding that it’s too early to tell if the new approach is having any impact on the quality of services provided to GYRD students.

“I think that we’re currently in a transition phase, and because of that we don’t really know. We’re learning a lot about contracting out.”

The adminstrators do hear about concerns and issues about special needs students on a regular basis, but Ruhl says the phone calls they field from parents usually have to do with elements outside the division’s direct control.

“We do get phone calls, and most times people are seeking to understand the funding structure from Alberta Education,” she says. It’s a structure that takes some time to understand, she adds, and having a group like PSNC-J to help parents of newly-diagnosed students is a very big help.

“That kind of knowledge is a very powerful and useful thing,” she says. “I think there are some areas of special needs that the government needs to address, in particular the funding. The only way that’s going happen is through parent lobby groups.” 

For the people behind the group in Jasper, it’s the hope of better tomorrow that keeps them working for their cause. Despite progress with regard to nomenclature and in terms of more enlightened support, there is still a stigma associated with special needs children, the group members say — one they believe is so powerful that it prevents some parents and caregivers from coming to the group’s meetings. Defeating that prejudice involves building a stronger, more supportive community for the young people of Jasper with special needs. 

One key area of concern for PSNC-J is the creation of assisted living facilities for adults with special needs. With the Evergreens Foundation getting set to build an assisted living centre for senior citizens in Jasper, the group had high hopes that some sort of space sharing arrangement could have been reached.

“Our idea was that if you’re going to build this, can we have one portion of the wing,” says Gallop. The Evergreens Foundation has a mandate to provide housing for seniors only, however, which has presented a stumbling block.

There have been plenty of obstacles like this for families to overcome, and there will be more in the future, but Gallop hopes that the not-so-new but very-much-improved organization will be better able to help out.

“I see that there will be ongoing struggles and obstacles for these parents to face, but they (PSNC-J) are paving the way right now and making it smoother for those who are coming up with those challenges.”