Jane is a 6-year-old girl with a diagnosis of cerebral palsy, a lifelong condition that affects movement and posture and is typically caused by damage to the brain before birth. She has significant difficulties supporting herself and with controlling her leg, arm and vocal movements. She enjoys music, with a preference for modern over classical, and has a pet rabbit named Hoppy. Jane has also been diagnosed with Global Developmental Delay (GGD), although given her communication and motor challenges, it is difficult to assess the extent of Jane’s cognitive abilities. Jane also experiences epileptic seizures, which are mostly controlled with a combination of medications but still can occur without apparent triggers. She has just commenced Foundation at her local mainstream primary school, having attended a specialist day care and kindergarten the previous year.
Jane is currently non-verbal and has not yet developed a consistent alternative form of communication that is reliable, though her parents report that they have a good understanding of what she is trying to communicate through her eye gaze and emotional expression, especially around music preferences and Hoppy’s presence. An electronic aided augmentative and alternative communication (AAC) device – a modified tablet – is currently being trialled at home and school. Jane currently uses a manual wheelchair for mobility and requires an adult to push her at all times. She also requires assistance to be transferred in and out of her chair. The physiotherapist has recommended that she should be in a standing frame for a period each day, which requires an adult to support her closely to avoid falls when transitioning from her chair. Jane is beginning to initiate her self-care activities, by making indications that she needs toileting, food, and drink.
Jane’s parents are divorced but have equal shared parental responsibility (i.e. both parents share major long-term decisions on issues such as medical matters and education). Jane’s disability providers had recommended that she should be enrolled fulltime at a specialist school in a nearby town, however, her parents did not agree. Travel between their home and the specialist school would have been onerous and they were keen to have her included with peers in a mainstream setting.
Jane’s needs are complex, and there were concerns that the school may not be able to sufficiently support her needs. While Jane was still in preschool, a series of meetings were convened at the school to discuss the adjustments that would need to be put in place for her education, including implementing some physical changes to classrooms and negotiating arrangements to accommodate visits by Jane’s support network. The meetings included representatives from the education authority, key school staff and the kindergarten staff, Jane’s NDIS disability providers, as well as her parents. There were some difficult decisions to be made. Jane’s parents had the support of an advocate of their choice from a children’s disability organisation to assist in the process, who helped them work through the issues and supported them in the meetings.
The primary school began transition planning with Jane’s kindergarten well in advance of her beginning school. She had attended a specialist day care and therapy centre in the year prior, and had also received significant early intervention support from a wide range of medical and allied health professionals and agencies since birth. Jane’s parents agreed that the school staff could work with these health professionals to support Jane’s transition planning by providing the school with information to help understand Jane’s ongoing medical, physical, cognitive, communication and social-emotional needs. Before Jane commenced attendance, the school arranged for teaching and support staff to receive training from an external provider regarding her personal care and correct use of the disability equipment.
Jane’s parents were very keen that the class and the school accept her and ensure she is not ostracised or excluded from activities by other students. In consultation with the school and her support team, Jane is not receiving any disability-specific services at school from her disability providers in the first term, as her parents would like her to settle into a school routine first before consulting with relevant staff to see what adjustments can be made. The plan includes the goal of having the occupational therapist and speech therapist work with the school to develop a reliable communication system to be used both at home and at school. Some therapies will be provided at school in the next term, and the Student Support Group (SSG) at Jane’s school has commenced consulting with the intended therapy providers to facilitate the timetabling of the sessions and ensure there is a suitable room. There is also a plan to rationalise Jane’s anti-epileptic medication later in the year, and with the possibility of an increase in seizure frequency, the SSG is working with a neurology liaison nurse – with the family’s permission – to review her health care plan and emergency response protocols.
Jane’s parents were invited to join the school behaviour consultation group and be part of the group reviewing the school’s code of conduct. The new code of conduct was created with a focus on mutual respect and consideration of others. The consultation group has developed an ‘inclusive play’ policy designed to encourage the participation of all students in the activities provided during breaks, which now include storytelling sessions in the library and activities in the school garden, which Jane seems to enjoy.
At the start of the school year, the SSG developed an Individual Education Plan (IEP) that considered the information provided by her family, supporting professionals including a visiting specialist education teacher, and the observations and assessments of the school staff. Jane’s teacher, in ongoing consultation with the visiting specialist teacher, completed a range of observational and functional assessments to guide any further adjustments that needed to be made to the plan and Jane’s daily timetable.
Current IEP goals for Jane include recognising and showing response to a range of sounds, using eye gaze to request objects, and moving her head or eyes as the object is moved. She is also prompted to reach toward an object and show recognition of her pet, favourite toys, objects, music and familiar people. Jane is beginning to show responses to changes in position, and is being provided with different materials and textures that she can explore or manipulate through touching, rubbing, tearing, scrunching and rolling. School staff have come to recognise that she is anticipating and responding with her carer when eating and drinking, which is facilitated through her AAC device. The current goal for Jane is to operate the AAC device using the 'on/off' input. Over time, these skills will allow for additional information and communications technology devices and software to be used.