Name: Pippa Hodge
Parent Carer Experience: I have three children; Amber (16), Jasmine (14) and Leo (13). Leo has Trisomy 21 (Down Syndrome) and is also autistic. He is a student at Downs View School. He has severe learning disabilities, and a severe speech & language disorder. He signs a bit, gestures a bit and uses symbol communications a bit. He was born with a rare combination of heart defects and has had several major heart surgeries with more in due course. He was also born with a bowel condition which needed surgeries and has recently been undergoing tests to diagnose Inflammatory Bowel Disease (IBD). Home life very much revolves around his medical and behavioural support needs, and his sisters are extraordinarily empathetic and supportive to him and to me. We are a tribe! Leo has been at home shielding since March 2020 and is ‘Zoom-learning’ with a remote tutor, with surprising success!
Role within PaCC: I helped to establish T21 Brighton & Hove (supporting families who have a child/young person with Trisomy 21) in 2011 and joined as a PaCC Partner not long after. I have a broad interest that spans all the PaCC work, probably because my own child’s support needs have dipped us as a family into most of the services across education, health and care! So being on the Steering Group gives me an opportunity to contribute and support across workstreams. My current areas of focus are the Covid Vaccinations for high risk children and young people, and Home to School Transport, which has been under the spotlight since 2019. I’m also really interested in improving hospital experiences for children with additional needs. Outside of PaCC I’m a Parent Governor, and I also co-founded a group called BADGE, which advocates for improved access and parking for disabled Blue Badge holders across the city. BADGE is a recognised disability stakeholder with the Council. (So if you are a Blue Badge family, do join!).