Ferial and Karim Visram used to spend most of their days scheduling appointments and driving their son Kiyaan to doctor’s offices, therapy sessions, pre-school classes and recreational programs. Five-year-old Kiyaan was diagnosed with Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) at the age of three.
“He was in programs seven days a week,” says his busy mother Ferial. “It can be overwhelming to deal with all the different professionals and organizations supporting Kiyaan’s development.” But in January of this year, the Visrams’ lives got easier. They were among the first families to transition to the Children’s Treatment Network’s single plan of care.
The Children’s Treatment Network is a new service delivery model for kids with multiple disabilities in Simcoe County and York Region in Ontario. It links over 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. Together they have created a single point of contact for a coordinated continuum of care designed to support each child throughout their development – from birth to age 19. The Network coordinates services needed and monitors each child’s progress. In addition, Network support is bringing additional services closer to home for more than 4,500 children with multiple disabilities in the area. Some of those services include paediatric developmental assessments, autism diagnostic assessments, specialty therapy services, augmentative communications and feeding and swallowing clinics.
Ferial says she was delighted when the family got the call to attend their first single plan of care meeting. “It was the first time that I had a chance to speak to everyone involved in Kiyaan’s care in one place,” she says. “It was wonderful to sit down and talk about our goals and have everyone listening.”
The Visrams are certainly not alone in dealing with the frustrations of getting a child with special needs the combination of services they need. Navigating all the different systems for medical, therapy, educational and recreational services can be a full time job – and a stressful one at that. It can also mean hours of time on the road to get to specialty paediatric clinics and/or hospitals that are miles away from home. Adding to the stress is the fact that the various service providers – from physicians to therapists to teachers and recreation specialists – rarely have the opportunity to collaborate on their respective programs. So the parents end up having to tell the same story over and over again.
Judy Andersen, a Children’s Treatment Network Service Coordinator with the York Region District School Board says, “For children with multiple disabilities, coordinating the required programs and services is not always smooth. Through the creation of Child and Family teams, we can add a level of support and structure to the child’s – and their family’s – lives by enabling professionals from many different agencies to work together towards common goals. And those goals are focused on the child and their family – not our own individual disciplines.”
The Network’s Child and Family teams include all the professionals involved in the child’s care. For example, Kiyaan attends Junior Kindergarten at Ashton Meadows Public School in Markham and requires special support at school. Speech and language therapy, physiotherapy, occupational therapy and inclusive recreation services are also key components of his care plan. So members on Kiyaan’s single plan of care team include representatives from the York Region District School Board, (his two teachers and the principal), as well as the Board’s Autism Team, Student Services Coordinator and Special Education Consultant. The team also includes York Region Early Intervention Services, York Region Pre-School Speech and Language, Yes I Can Nursery School, York Support Services Network, Kerry’s Place for Autism, and the Community Care Access Centre.
In the single plan of care model, the Service Coordinator meets with the child and family to set goals together. After this meeting, the team members are identified and the group meets to share the goals and put the programs and support mechanisms in place to achieve those goals. A shared electronic record allows professionals from multiple agencies to share clinical notes in real time. Update meetings are held to check progress and make adjustments to care plans as the child grows and develops.
“Working as a collaborative team makes it that much easier to get everyone on the same page in terms of the child’s needs and goals,” says Judy. “We can be more effective when everyone’s efforts are aligned at home, at school and at play.”
Ferial says that when she came to a team meeting, the biggest breakthrough was that the conversation centered around the family’s goals for Kiyaan. “Finally I felt that everyone was listening to what we wanted, which was to develop his social skills so he could function in a normal school setting. I simply couldn’t get that kind of interaction before. All I can say is, thank goodness for a single plan of care.”
Over the next three years, the Children’s Treatment Network expects to transition all children with multiple disabilities in Simcoe and York to the single plan of care system. For more information, contact the Children’s Treatment Network of Simcoe York at 1-866-377-0286 or visit www.ctn-simcoeyork.ca.