There are not many twists of fate crueler than learning your child has a debilitating, possibly lifelong, disability.

Getting your head around that little nugget of news is tough enough, but for many parents what followed was often just as difficult, if not more so.

To access resources vital to their child’s future, they struggled to navigate a bewildering and fragmented system of services that left them frustrated and stressed to the point of exhaustion.

Like many parents, Theresa Meininger-Sanders, of Lefroy, wants the best for her child, daughter Jessica, 4. In her case, it means enlisting services to help Jessica achieve her full potential.

About two years ago, Jessica was stricken with encephalitis, which left her with serious developmental and physical challenges. Meininger-Sanders, like other parents in similar situations, found there was little continuity of service, with therapists coming and going as responsibility for Jessica’s treatment was transferred from one agency to another.

“They (the various care providers) had no ability to communicate accept through me. It was hard because the onus was on me,” she said, adding: “Now it’s not.”

It’s not, she said, because of the emergence of the Children’s Treatment Network (CTN), an agency that serves as an umbrella organization for the variety of agencies providing treatment for children, resulting in continuity of resources.

“The parents said, ‘I had to tell my story again and again.’ They asked, ‘don’t you people talk to each other? That’s when (we) … realized how tough it was for parents with children with disabilities,” said Bob Morton, chief executive officer for CTN Simcoe/York.

The network is a ‘single plan of care’ model that aims to reduce wait times for resources, and stress for families waiting for treatment, or trying to ‘break in’ a new service provider.

Its first year of operations resulted in more than 2,400 children in Simcoe County and York Region getting services closer to home, with a continuity of resources that not only aided treatment, but also reduced stress for the whole family.

“It (was) really stressful and frustrating because you were losing time. You are trying to deal with your own life but had to go back and deal with this history over and over again,” said Meininger-Sanders.

The family’s experience with care providers would resonate with other families who have children with complex needs. Responsibility for Jessica’s treatment was transferred from Simcoe Community Services’ (SCS) early intervention program to the Community Care Access Centre (CCAC).

“We were nearing the end of the services, funding was ending. We were going to be transferred back to SCS, preschool division. We would have been on a waiting list (and not receiving services). I was pretty desperate. I didn’t want that to happen.”

And so she asked: “Please, can we find a way to keep these services going because I don’t want to go back on a waiting list?”

At the time Jessica was progressing well, said Meininger-Sanders. A fortuitous set of circumstances led to her wish being granted. In September 2006, the CCAC and other care providers began a partnership with the network.

“By changing where we were getting the therapists from, the therapists working with Jessica were able to stay on. It meant that she had a consistency of treatment.”

The network provides co-ordinated, integrated care services for more than 4,500 children with multiple disabilities and their families in the region. It links more than 40 health care, education, recreation and social services agencies, including hospitals, school boards and rehabilitation providers, so they can take a team approach to each child’s care.

For kids like Jessica, and their families, the main benefit is the single point of contact for resources, and the continuity of services the network offers.

In its first 12 months, the network has:
• Added 71 more professionals and physicians to increase capacity and reduce wait times
• Established six community-based resource centres (with four to be added) to bring more services and specialized equipment closer to home.
• Increased pediatric diagnostic assessment services, augmentative communication and feeding and swallowing resources within the community.
• Created a shared electronic record that allows professionals from multiple agencies and organizations to develop a single plan of care for each child, share clinical notes and monitor their progress.

All of this has been accomplished, said Morton, with a relatively modest budget of $10.6 million from the ministry of children and youth services. With that money, the network is funding close to 80 rehab professionals working in the community.

The network has six full-time administrative staff, “agents of change,” said Morton.

“It’s a really relatively small amount of money in the grand scheme of things. Hopefully this money will impact on the big picture of money spent on kids. I believe we will find out this does create more bang for the buck.”

Continuity of treatment, and the reduction of stress that goes with it, means a better quality of life for everyone in the family, said Meininger-Sanders.

Jessica has a twin, Alex. “I (had) professionals tell me it’s critical to spend equal time with him. On a day-to-day basis, that (could be) pretty hard.

“It’s certainly easier because the therapists know Alex as well as they know Jessica. They will bring him a toy, and know he is a part of the family. It’s the personal touch that makes the difference.”

In the end, the value of the network will be measured by its success.

“Jessica is making great progress, and I know a big part of that is that my team is working together.”

To contact the CTN, click the link provided with this article or call 1-866-377-0286.