Our research has found that many parents feel isolated; they are often worried about their child’s future and during transition periods; many also feel stressed and others said that they have experience some form of prejudice as the parent of a disabled child.
Through surveys, interviews and focus groups in 2013 and 2014 we also found that parents value peer to peer support and 95% of parents of our Ambassadors that we spoke to* told us that they want a Whizz-Kidz Parents Network to give them the support that they need.
Ruth Owen OBE, Chief Executive of Whizz-Kidz, said: ‘As a wheelchair user myself, I know how hard it can be to navigate the public services required of day-to-day life - and I’m an adult! Parents - particularly those who don’t have friends with disabled kids - often worry more than their children do as they face a system of struggle just trying to do what’s best for their families.
‘Whizz-Kidz has more than 24 years of supporting disabled children with wheelchairs, training and skills, and we’ve gained a huge wealth of experience and expertise which we can offer parents through our new online resources – and our joint forum with the wonderful Mumsnet.’
Key findings from listening to parents and families:
- 95% of respondents said that they want a Whizz-Kidz Parents Network.
- Over 80% of parents are not a part of existing online parents networks.
- Parents want relevant information to them. Consistently our findings show that parents don’t tend to be a part of existing networks because they are not relevant to their needs as families of wheelchair users. For example one parent said: ‘I dislike the fact that most groups mainly cater for children with learning difficulties or behavioural difficulties and have very limited information on or for wheelchair users.’ Others said: ‘I often find it difficult to find relevant information.’ ‘Other networks are a bit vague so I have never bothered with them.’
- Parents want peer to peer support. One parent said: 'Being a parent of a child with a disability can be very isolating. It would be good to share experiences both good and bad with other parents and families.’
*Around 130 family members took part in our online survey, focus groups and interviews during 2013/14.