Young adults with disabilities are being supported in understanding and articulating their feelings, enabling them to increase confidence in themselves and their abilities, through a new innovation from two specialist neurorehab providers.
MyAbility was developed to enable young people to better understand their disabilities and express themselves, while allowing parents and carers to learn more about ways they can support them in doing so.
Aimed at young people with conditions including Cerebral Palsy, brain injury and autism, MyAbility has devised a 14-week pack tailored to the needs of the person involved and written in an accessible and engaging manner, alongside an accompanying parent or carer pack.
Among the MyAbility initiatives is MyAbility Reflection, which gives the chance to focus on their abilities rather than disabilities, and reviews their aspirations from the start to the end of the period.
The project, created by ATtherapy and Recolo, has recently completed a pilot study, with strong feedback attesting its effectiveness in supporting the emotional needs of young people. It is set to launch later this year.
MyAbility was the brainchild of Francesca Sephton – a highly specialist speech and language therapist at ATtherapy, who works with children and young people with severe speech limitations – who realised the many questions they had, but were often unable to ask.
I was working with a number of teenagers with Cerebral Palsy and they were given the communication tools to be able to successfully articulate themselves. While they did have a good level of understanding, they weren’t able to express themselves without the use of technology,” she recalls.
“They had so many questions, such as ‘Why do I have Cerebral Palsy?’, ‘Will my disability go away?’ and ‘Why am I different to other people?’.
“There were lots of questions about their disability that had never been discussed or responded to in an inaccessible format, but nothing was available for the young people on my caseload to discuss their disability in a comprehensive, accessible way.
“It’s quite a complex thing to explain, and might not be something they had ever discussed in this way with their parents or carers, but they really needed to know the answers to these questions.
“We also talked about their aspirations and what they wanted to do in their lives and careers, so I wanted to show them what was achievable and reflect positively on their abilities.”
From there, Francesca realised the need to create something new and specific for this age range – “there were books for children which had characters with disabilities, but nothing for my teenagers to answer their questions”.
She approached Dr Andrea Pickering, consultant clinical psychologist at Recolo, a community neuropsychological rehabilitation provider for children, young people and their families, to work alongside her to develop the idea further.
Recolo and ATtherapy set about creating MyAbility, to address the need for appropriate clinical resources to assist the young person to understand and adjust to their diagnosis.
“By creating these packs, we wanted to make something fun and engaging, but that would have the very important role of helping the young person and the parent or carer to work through questions they may have,” says Francesca.
“There are some really important opportunities for young people to think about what they can do and who they are, while also understanding more about their disability.
“It’s been great to work with Recolo, and Andrea has been instrumental in the development of the packs, service delivery and the research and development.”
Emma Bowers (Highly Specialist SALT) and Niki Dutton (Highly Specialist SALT) were also key members of the MyAbility development team, with Emma developing the traumatic brain injury version and Niki designing the autism version.
And following successful feedback, the team are now focusing on launching MyAbility later this year. A YouTube channel has already been created, to help pave the way for its release.
“The feedback has been really positive, in that it confirms we are doing what we set out to do in supporting young people to talk and express their feelings, parents to have open discussions, and psychologists and speech and language therapists also said they found it very thought-provoking,” says Francesca.
“We are continuing to develop and refine it, with a few tweaks here and there, and are really welcoming feedback from clinicians to ensure it is appropriate for both users, parents, carers and clinicians, and additionally to make this remotely accessible during the COVID-19 pandemic.
“The full team are working hard ahead of our launch and we are so excited to share MyAbility, particularly with those young people and families who will benefit from it.”
