We may be a small community, but sharing our experience and knowledge is a key part of how we support each other.
Here are some products and services that CDG UK families and experts have recommended to us:
‘Any app should be used alongside the recommended interventions and strategies in the child’s individual communication plan.
It would be difficult to recommend specific apps for every child with a certain condition however we have broken this down into areas of need:
Any apps for Augmentative and Alternative Communication (voice output communication aids) will need to be assessed for individual children by a speech and language therapist and ideally this will be through the local AAC hub (ACT West Midlands).
Also we advise that parents/carers contact the speech and language therapists for the children directly and look at their most up to date communication plan.’ NHS Worcestershire Speech and Language Therapy
Disabled Living have organised a ‘Kidz to Adultz’ event since 2001. The free exhibitions are dedicated to children and young adults up to the age of 25 with disabilities and additional needs and are a one stop shop for the most up to date advice and information on mobility, funding, seating, beds, communication, sensory, transition, education, housing, employment, accessible vehicles, transport, style, sports, leisure and more.
“The In Car Safety Centre were excellent at ensuring that our child had the correct specialist car seat, as he needs a 5-point harness still due to his central hypotonia. Ash was our contact at In Car Safety Centre in Milton Keynes and she was really helpful. She advised us to apply to Newlife to request funding towards the car seat (was over £2k !!!!) We had to pay 20% of the cost of the seat as the charity cannot pass this equipment on to anyone else.” Chris, 2018