T-Jay is bright, outgoing seven-year-old, who enjoys interacting with his close friends (His Team). He has a great passion for football, yoga and Swimming, but most of all he loves his computer games like his peers. As well as his friends, T-Jay has dedicated family support, who all are trying to ensure he leads the best life as a seven-year-old could have.
T-Jay has Duchenne Muscular Dystrophy (DMD). This is a life-limiting condition, DMD is a progressive neuromuscular disorder, causing muscle weakness associated with muscle wasting, the common effects are frequent falls, fatigue, difficulty with motor skills (running, hopping, jumping) progressive difficulty walking, muscle fibre deformities, trouble getting up from lying or sitting positions and eventual loss of ability to walk, normally by age 12.
As part of his care plan, T-Jay has an EHCP (Educational Health Care Plan), which states it is vital for him to have one on one support from personnel with DMD experience or neuromuscular disorder condition. This plan is currently implemented at his school Westdale Infants (WIS). The main reason he requires one to one support is to keep him safe. T-Jay has eyes on him all the time, (one fall could mean that T-Jay would lose the ability to use his legs) manage his emotions and his fatigue while maintaining his independence as much as possible.
The school transition period for boys with Duchenne, like T-Jay, is vital, and it is imperative that consistency within support at school is upheld. The family have been tirelessly working with the relevant stakeholders (i.e. Westdale Junior School (WJS), The Local authority and the health professionals) to ensure T-Jay’s care within the school is kept consistent as his condition progresses. T-Jay’s current PCA has been supporting him in the last two academic years and has relevant experience of working with boys with a degenerative neuromuscular condition. Therefore she can anticipate and respond appropriately to T-Jays care needs daily. T-Jay’s PCA is his main support network within the school, and over the years she has gained his trust so that he can speak to her about his feelings. By not allowing T-Jay’s current PCA to transition with him and introducing a new teaching assistant with insufficient experience and knowledge about his condition will have a detrimental impact upon T-Jay’s emotional needs, which in turn could affect his educational development. His current health professional teams have advised both School and Local Authority the importance of mental health support for boys with Duchenne and how it is essential to put in place preventative measures when boys with Duchenne transition from infants to junior school.
At the moment at his current infant school Like any other child, T-Jay has accesses to the full curriculum, this includes attending school trips for which he requires the use of a wheelchair, and alongside the teachers, his current PCA ensures that his learning is not affected and he flourishes like any other 7 years old. In order to make sure that T-Jay’s current condition doesn’t deteriorate so quickly, it is imperative to ensure the level of care and support he is currently getting is upheld.
As it currently stands Westdale Junior School and Nottingham County Council have been deliberately avoiding to acknowledge the severity of this case, bearing in mind that T-Jay has his own funding package (HLN1) to cover the level care and support he requires and this funding is more than sufficient to cover the cost of PCA. Therefore as mother surely I am entitled to challenge the proposal put forward by the school. The school’s argument is if they allow T-Jay’s current PCA to transition with him, this will lead to redundancies, to avoid this they would like to use one of their current TA (Teaching Assistant) to care for T-jay. However, this TA doesn’t possess the required experience or knowledge, never mind the emotional bond needed to care for T-Jay during this critical stage of his condition.
Regardless of my best efforts, Westdale Junior School, Nova Education Trust and Nottingham County Council have all ignored the health professional advice and are insisting on using their unexperienced TA, or I could take T-Jay somewhere else. BUT WHY? Has he not lost enough?? T-Jay is expecting and would like to progress to junior with his friends from pre-school, who have accepted him and share a special bond with him.
My family and I have been fighting and educating different organisations ever since T-Jay has being diagnosed, BUT I NEED YOUR SUPPORT WITH THIS FIGHT, PLEASE SIGN THIS PETITION