If you're a carer to ND or disabled DC's are you able to work, what are the barriers?

I have an autistic teen. He goes to special school now. When he was in younger he was in mainstream primary and I couldn't work as we had three appointments every week. I also had to collect him on a regular basis due to his behaviour. I also needed to spend other days when he was in school, attending SEND workshops, teaching myself about SEND and disability law, and writing applications for his DLA and EHCP. It was a very busy time.

He is more settled at his current school and his EHCP and DLA are watertight now. He is at school reliably 5 days a week, and I'm never expected to collect him early. I claim Carer's Allowance and UC topups and financially this is a reliable income for us and I've no great urge to return to work. He still needs care during school holidays, and his time at school is time I want to spend on self-care, catching up on a backlog of home maintenance and other odd jobs and a bit of a social life and fun activities like art and yoga classes. When he is home from school I can't leave him at home or use any childcare, so going out to work would mean all my free time would disappear and I'd have no time for myself.

The biggest barrier is the local authority and school. We have an ehcp but don't have access to an education/school. Diagnosis was 5+ years ago, i applied for the ehcp 4 years ago but we are stuck waiting for the provision to be in place. Until then I'm stuck at home caring for my child and sorting through 5000+ pages for another tribubal

Neuro Diverse comes in many different forms, my son is 14 with severe autism and learning disabilities he's cognitively around 2/3 years ,and needs 1:1 supervision at all times although he goes ti a special school, nobody would be prepared to help look after him and you can't get childminders for teens .

I think the needs of my child were so obvious, it helps in this case that there are physical issues as well as ND issues and regular hospital stays, that people could see that it was impossible. I was also able quite quickly to articulate the challenges we were facing without feeling the need to excuse it. I wasn’t always that confident before having children!

Me and dh are both unable to work due to the DC Sen and medical issues. The main factors that lead to this situation were :

My exhaustion
huge volume of medical appointments
Lack of any family support

I’ve always worked full time and a single parent to ND boys . It’s always been tough and I’ve only been able to do it because of the flexibility I’ve had from my employers . Being able to adjust my days and times etc and work around school drop offs .

I deliberately took on a challenging role in order to force myself not too spend too much time and energy on trying to fix what can’t be fixed. It sounds perverse but was necessary, if sort of worked, my mental health is better, we have more money for wheelchairs etc, but it is unrelenting and I’m not sure my physical health is going to hold up long term.

I do now work full time but didn’t work at all for years, and very part time for many, many more. Full time even now is tough, I’ve done blue badge reapplication, congestion charge reapplication and social care paperwork just this week around my full time job.

DH is also supporting with looking for housing (lots of phone calls and 2 visits this week) and chasing wheelchair services - more calls. He also works full time.

One of the other barriers is the number of appointments children have. At one point t so would regularly have 5 appointments a week, even now, he’s 19, there are still multiple appointments a year, probably once a month. Usually medical, often educational, sometimes social care. All need someone with parental responsibility to attend which means they can’t be outsourced to child care (if you can find it) or grandparents etc.