With ALMT funding, BOSP Tots has successfully run a baby and toddler group for families who have children with complex disabilities or life-limiting illnesses for the past 3 years. BOSP is an outstanding organisation and has been supporting children from birth to 25 years, and their families for over 31 years. In 2022 the organisation received The Queen’s Award for Voluntary Service.

Profound learning disabilities and critical illnesses blight young lives and put great stress on the family unit. Disabled and very ill children face discrimination and substantial barriers to participation in mainstream activities, resulting in the whole family becoming marginalised and vulnerable to depression, family breakdown and social exclusion.

The project will deliver two groups on a Tuesday: BOSP Tots from 10.00am to 11.30am and Tots Explorers from 1.00pm to 2.00pm. Over the past few years, the morning group has developed into a really wonderful peer support group, and members now support each other outside of BOSP, and meet up in the school holidays. This session is now oversubscribed and some of the children who want to come in the morning would suit a shorter more sensory based session in the afternoon.

Each weekly session has a theme which encourages the children to be inquisitive and learn. Parents are also given strategies to help with social skills, behaviour, sleep, sensory support, and communication.

Visits from the Speech & Language team and SENDiass, who support with education, also attend. The groups reduce isolation and co-dependency for families; helping to prepare them for pre-school and respite in the future.

Many of the attendees, don’t know about, or struggle to access services, funding or social care to which they are entitled. An additional 2 hours a week advocacy support will help families navigate the system and find solutions. This is a new role and not currently available elsewhere locally. The project will provide ongoing support for approximately 28 children with complex disabilities aged 0-4 years, and their families.