How to better support parents?

[ITTW3]

Hi everyone!

I've worked for a few years caring for children with learning disabilities and other chronic conditions. Having seen how difficult care coordination can be for parents, I've decided to try and build a digital platform and service that helps families manage this.

I'd really appreciate the chance to get people's views on what parents find most difficult / what they might find most helpful in a service targeted to supporting them. If anyone had time to give their views, please drop me a message or write a comment.

I'd really appreciate it

Sam

[Sarbjitpahal11]

hi

very good idea I am request everyone please try to share any idea this is a very good platform we can learn from each other

[HolisticMum]

My boys are young adults now. Our Authority promoted self directed support over a decade ago, where the parents became employers and they could employ a PA/helpers. We had to have a Support Plan to follow. It's been time consuming work really but thought it was worth it. Problems arise over the years though with the local authority changing the goalposts. They don't want us to give a pay rise to staff that have worked for us for 10yrs. One Exec used to say we could pay more if we had it available. After that person left, we now don't have that available. I have felt so anxious over the past year at questions all the time, I wished I'd never taken it on. Now all they want to promote is us using Agencies. Some parents have tried this and their staff are far from suitable. It's all about how they can cut the budgets now and not the consumer getting any quality service.

Another thing that has annoyed me is if the young person is on benefits like PIP or UC it doesn't make anything easier when applying for a Blue Badge, getting dental treatment etc. Everyone needs more from the carer, filling in forms online, photos of said person etc etc. Someone in Government or Local Authority should be looking at how to cut out the red tape for the carers instead of throwing up problems every step of the way.

Can 't imagine this is the type of thing you wanted to hear. Apologies if so.

[ITTW3]

Thank you both so much for taking the time to respond to this - this feedback is very helpful indeed

[Bluey203]

Totally agree with holistic mum. The repetitive paperwork is ridiculous. PIP requires a huge amount of detail about the individuals difficulties. Then when the child reaches 18, they're suddenly classed as an independent adult capable of making decisions, which obviously isn't the case with those who have severe learning disability, nonverbal in any form and lack capacity with most things. For the carers it like starting from scratch, having to explain their child's/adults difficulties every time, for PIP then again for universal credits and adult social services etc, it should be far simpler with those who have a lifelong disability, we shouldn't have to keep jumping through hoops.

[flaounes4T]

From flaounes4T I have had no positive help/advice from UC/PIP since applying for support for my son. Age 52/ MLD schools till 19/Dyslexic. Diagnosed in Nov2020 as Autistic /Highlevel. He has not worked since then as the small advice office has found nothing. He will soon be Alone---No family , just me. Ifeel a need to persuade Gov/ Councils-- to be more pro-active. I,ll give support to any suggestions.