This case study forms part of the What Good Looks Like report on people with a learning disability and autistic people. This co-produced report was commissioned from the Building the Right Support Advisory Group, as part of the wider action plan developed by the Building the Right Support Delivery Board. It has been supported by Partners in Care and Health.
Introduction
mASCot is a flexible and agile membership group for parents of autistic children in Brighton and Hove. It is open to all parents with children and young people with or awaiting an autism diagnosis. It provides mutual support and help to more than 1,100 members, including some face-to-face groups, training support for parents, coffee mornings, occupational therapy training/support on sensory regulation and hiking groups. For parents it created a sense of being part of a defined community of people who understood their world and would not judge them. The group operates through an online community via Facebook.
Its focus remains on mainstream education and reducing the social isolation experienced by many children in schools; and supporting families that are experiencing problems working with health/ education using the unique advice and knowledge from other parents. This peer-to-peer support between parents is not formalized but it is more organic where parents align with and support each other.
About mASCot
mASCot is a membership group for parents of autistic children in Brighton and Hove and is open to all parents with children and young people with or awaiting an autism diagnosis.
It is a community of parents that provide mutual support and help to each other. This includes some face-to-face groups and training support for parents including coffee mornings, occupational therapy training/support on sensory regulation and hiking groups.
There are also some face-to-face projects for children and young people that benefit from additional external funding. These emerged from a pilot of a couple of groups 10 years ago which successfully met unmet need for social activities for autistic children and young people, and these now include a youth club and Lego group.
It is funded through small grants Awards for All, and Sussex community funds. National lottery funding provided £40,000 for three years, £10,000 from Children in Need and £20,000 from trusts/foundations and grants. There is no public service funding, and the total budget amounted to a total of £63k in 2021-22.
The structure to run mASCot is funding light, running on a small team of two people. There are 1,100 families involved. There are some small project resources, but as the membership grows this brings more expertise and experience into the group.
Sam Bayley, a parent of a young child with an autism diagnosis, established it 14 years ago. At that time, there was very limited support and advice for parents, and often professionals had very little understanding of how to work with autistic children.
Sam established a network of parent carers to secure a collective voice with shared experience to help parents navigate services with a particular focus on mainstream education and health provision.
What makes it good?
- Sense of community/belonging amongst parents: It's light on rules/regulation with most communication happening online via Facebook. Careful moderation is required but within an ethos of mutual support and being kind to be each other.
- Membership is big, but it remains informal and builds networks between people: Parents are very clued-up and have energy to give back.
- Flexible and agile: Parents work together and take responsibility for finding solutions to requests and concerns. For example, a gymnastic club was organized by a parent after a few parents had been unable to find a group that worked for their child.
- Peer-to-peer support between parents: Organic support where parents align/support each other. Recognition that there is a space for individuals to support each other when needed.
- People feel passionate about mASCot and will bring this energy to supporting other parents – and, if needed, influencing local services and policies
- For parents it created a sense of being part of a defined community of parents who understood their world and would not judge them. The group operates through an online community via Facebook.
It has evolved over the years, but its focus remains on:
- supporting parents, who can be isolated, with a particular focus on mainstream education and reducing the social isolation experienced by many children in schools; and
- supporting families that are experiencing problems working with health/ education with advice and knowledge from other parents. Supporting parents to ensure that their expertise is played into conversations with professionals.
Much has changed and there is more knowledge in the system, but responses are still inappropriate/odd for families. There are disparities between schools even between teachers.
mASCoT is a self-support network not a service. The committee is parent-led and mASCot is the community. It supports families by using the lived experience of its members. It has an ethos of being owned by its members. Collective responses to individual requests for support but also to parent-wide concerns about services.
mASCot members worked together, with the support of a local councillor, to highlight gaps in services and quality concerns in the local children and adolescent mental health service through Brighton and Hove’s health scrutiny in 2014.
mASCot has, more recently, used the lack of action on the recommendations coming out of this review to drive a conversation with the clinical commissioning group and provider on the changes needed and timescales.
The challenge
There weren’t many challenges. mASCot was designed to be run by parents for parents – and, as such, works in a flexible way. It clearly met an unmet need and has continued to grow from the initial group of parents. However, more experience of fundraising would have been beneficial, just to secure some funds to support face-to-face activities with parents.
How is the new approach being sustained?
Currently membership is continuing to expand and the bigger it becomes the more expertise there is within the group. The experiences of 1,100 families should be influential but also creates a bank of experience and knowledge for members.
There has been a steady shift in the relationship between the local authority SEND part of the business and health with mASCot. Over the years there has been a growing willingness to involve mASCot and give them a place at the table in conversations about services, policy changes and how things are working on the ground. This clearly reflects shifts in national expectations, but it does mean that the lived experience of people trying to navigate a complex system and get appropriate support for their child are starting to be listened to.