Designing Digital Services For Parents of Disabled Children - Survey

Hi @Mary_Scope - I have looked as far as I can at your survey as a parent & grandparent (possibly also a great grandparent) as I have a hereditary disorder which I've unfortunately passed on to definitely all 3 of my children & all 3 of my grandchildren.

After mentioning that the word used in the survey should rather be 'regularly,' might I ask if a parent can actually access help from a 'Professional,' by which I presume you mean a Health Care Professional on a social media platform unless parents have found one willing to reply on a community for their child's disability?

It's a long time ago, but I sort of 'stumbled' on a Dr on an email forum. I thought he was just a very jocular junior Dr, but he turned out to be the Assistant Director of the world's first Chiari Centre in New York, who became an enormous help to myself, family & others, but does this sort of thing still happen? Would any perceived 'professional' surely only be able to give very generic answers on a forum, as they can't know the specifics of a child's individual circumstances, so, even if possible, would it help?

Hereditary disorders aren't mentioned in the survey, unless they fall under 'Chronic or long term health condition.'

I just feel that there are specific websites about many disorders where 'some' answers can be found, but how would a digital service better help parents? As a parent actually talking to someone with the same disorder helped as I met the founder of the UK's Ehlers-Danlos Support group (tho she had a different type of EDS to myself), & she gave me all the literature she had. I then met another with the same type of EDS as myself, but she was completely different to myself. Even within my own family, as we have an autosomal disorder, there's 'variable expression,' so we're all different.

It's just something I feel is lacking since Scope no longer has 'Navigate,' & other help for parents has ended it seems other than the 'helpline.' Sometimes you just need a human being on the end of the phone.

I'm not trying to be negative, just hopefully critiquing what you hope to achieve. I think Scope's online community definitely helps in connecting parents with children with similar disorders, & overall there's support offered no matter the disability.