REHAB & COMMUNITY CARE MAGAZINE
January 28, 2008

Developing a continuum of care for Jessica

Diane Dekkers, RN, North Simcoe Muskoka Community Care Access Centre and Linda Abernethy, Resource Teacher, Simcoe Community Services

Theresa Meininger-Sanders’ goals for her daughter Jessica might seem like nothing out of the ordinary. She wants to see Jessica walk, learn to speak, and feed herself. However, these are challenging goals for 4-year old Jessica, who has developmental delays, multiple physical disabilities and feeding concerns.

Since birth, Jessica has had a complex schedule of therapeutic support services including case management and early intervention services, physiotherapy, occupational and speech therapy, as well as nutrition services. As of this year, Jessica became one of the first children to have these services coordinated and integrated through Children’s Treatment Network of Simcoe York’s single plan of care initiative. Before the Network came into being, establishing a long-term care plan was not without its challenges.

Jessica’s challenges
It has been a rocky road for this diminutive girl who strives to keep up with her twin brother Alex. At the age of six months, Jessica’s parents and pediatrician noticed that she was not hitting her developmental milestones. At the time, Simcoe Community Services Infant Development referred her to occupational and speech therapists from Royal Victoria Hospital in Barrie, Ontario. Jessica was also referred for physiotherapy and dietary support from Southlake Regional Health Centre in Newmarket. Through a concerted effort on everyone’s part, Jessica was able to take her first steps by the age of two and things looked promising.

Just as she began to progress in earnest, Jessica suffered a grand mal seizure while the family was traveling in the U.S. – an event that caused significant regression. Not only could she no longer walk, stand or sit on her own, there was paralysis on the left side of her body. She had also stopped speaking and eating. While there has been no concrete diagnosis on the cause of the seizure, it is speculated that it was likely caused by a strain of encephalitis.

Jessica spent six-weeks in hospitals - first in the U.S., then at McMaster University Hospital in Hamilton and finally at Sick Kids Hospital in Toronto.  Jessica’s intensive rehab program was then transitioned to the North Simcoe Muskoka Community Care Access Centre (CCAC), who assumed responsibility for coordinating her physiotherapy and occupational therapy in conjunction with continued visits with her dietitian.

Therapy approaches
Through the CCAC, physiotherapist Barb Wenzel from Closing the Gap Healthcare Group in Barrie visited the home regularly to work with Jessica on a number of fronts. When Barb first met Jessica, the toddler was unable to sit or crawl and had very limited mobility. “There was also a sensory component,” she explains. “Jessica was tactile defensive since birth and couldn’t stand anyone touching her feet. Her left side was also very sensitive to touch.”

Jessica was also wary of strangers, so it took time to build a rapport with her. An added challenge was the fact that Jessica had a feeding tube that limited the ability to perform activities on her stomach. “Even when the tube was removed, we had to be sensitive to the site where it was. That was a whole extra challenge from the start.”

Given the mobility and paralysis issues, Barb has focused on exercises to strengthen Jessica’s trunk and stretch her hamstring muscles, as well as her Achilles tendons. In terms of her gross motor development, Jessica can now crawl and kneel, and can move from a sit to a stand position with the help of a stool, as well as take reciprocal steps with support. Jessica now has rigid foot braces called AFOs (ankle-foot orthosis) which help to control her ankle and knee movements and support her in a standing position.

Occupational therapist Laurie Rife, also with Closing the Gap Healthcare Group, has continued to provide in-home services. She spends time teaching Jessica to feed herself, while increasing the textures of foods, and encouraging her to use her left arm to engage in two-handed activities. Given her tactile sensitivities, Laurie has Jessica experience different stimuli through water play, experiencing textures on her skin and letting her play with rice and macaroni.

Since the age of three, Jessica has attended Rotodale Nursery School, where she is supported by her resource teacher Linda Abernethy. Home physiotherapy and occupational therapy services have continued. Dietitian Fiona Pearce from Southlake Regional Health Centre continues to support Jessica’s feeding and growth development. In addition, Jessica’s occupational and physiotherapists go to the nursery school every six to eight weeks to work together with Jessica’s mother and her resource teacher to discuss equipment requirements and integrate the appropriate therapies into her regular school activities and day-to-day life. Her speech therapist, Cheryl Warnica with Simcoe County Pre-School Speech and Language Services Royal Victoria Hospital, also visits the school occasionally.

Single Plan of Care - an integrated team approach
Establishing and maintaining consistent connections with all her caregivers has been integral to Jessica’s continued progress - especially given the myriad of mobility challenges and her difficulty in adapting to new situations and people.

However, in accordance with standard procedure following the provision of acute services, Jessica’s care was set to be transferred from the CCAC back to Simcoe Community Services Pre-School Services. This meant Jessica’s services could be scaled back given funding and service capacity constraints.

This fate was avoided in January 2007. That was when Jessica became one of the first children with complex needs to be supported by Children’s Treatment Network of Simcoe York. The Network’s new services delivery model focuses on providing an integrated single plan of care for children with multiple disabilities in Simcoe County and York Region in Ontario. It links over 40 healthcare, education, recreation and community service organizations so they can take a team approach to each child’s care. A shared electronic record helps therapists from multiple agencies monitor each child’s progress through all the phases of their development - from birth to age 19.

Although some case conferences had been held for Jessica in the past, the Network’s single plan of care process allows everyone to work even more collaboratively together. More importantly, strategies centre on the parents’ visions and goals. For example in Jessica’s case, her mother wanted to focus on walking and speech first, then address issues related to improving mobility on her left side. In addition, rather than working in parallel with each other, all the therapists look for opportunities to integrate efforts and support each other’s work through the various therapies and treatments Jessica needs. The approach has become more trans-disciplinary in nature.

Network funding has also allowed Jessica to retain the same level of care with the same therapists – a commitment that will continue even after she registers for senior kindergarten next year. There have been some good breakthroughs made over the past few months, and the ability to maintain a team approach will help everyone continue to meet Jessica’s and her family’s goals. In addition, the family has been relieved of the stress of having to start over with new services, supports and personnel as Jessica transitions through the system. As Jessica’s mother says, “Having a team that’s working together and focused on Jessica is helping us meet goals faster. She’s at a critical stage in her development. The timing of her single plan of care couldn’t be better.”

Members of Jessica’s Care Team, Resource Teacher Linda Abernethy (left), OT Laurie Rife (centre) and PT Barb Wenzel (right), work together at her nursery school to integrate therapy activities into Jessica’s day-to-day life.

Jessica (right) and classmate Jaclyn (left) get their creative juices flowing at Rotodale Nursery School where Jessica is supported by her resource teacher. Jessica’s occupational and physiotherapists also visit the school to integrate therapy activities into her regular school activities.

PT Barb Wenzel (right) and Resource Teacher Linda Abernethy (back) work on Jessica’s balance and foot preparation to prepare her for standing and walking using a therapy ball as part of her school day at Rotodale Nursery School.