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

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I'm trying to find a research topic for my masters and I have lived experience of being a parent of a ND child. Luckily I have fantastic support and am able to work but I know this isn't the case for everyone.
I would like to look at the mental health benefits of work or training/ volunteering and the barriers to accessing this if you have a disabled/ ND child or children.
I know wrap around care is a major barrier but I was thinking about sleep too. My kids don't sleep and I think sometimes how nice it would be to not be exhausted.
Would anyone be willing to share other barriers and complications for me to explore?

Until my son reached secondary age we were able to find holiday and before/after school childcare but when he moved to secondary it was literally impossible. Further complicated by school transport which would only take him to home address.
we ended up employing college/sixth form students at minimum wage to be in our home when he got home, but far more expensive than a childminder and we couldn’t DBS check them as we were individual employers, not an organisation.

That said, though it was thoroughly exhausting I am glad I continued to work.

If you look at the depression stats for unpaid carers ( this might be carers of children or adults) the stats are pretty similar and the stats for associated co-morbidities and other illness associated with stress and depression are also pretty awful. Incidence of depression in the general population is circa 12% but for unpaid carers its 30-50% depending on the research.

Unfortunately the need for social care is growing exponentially alongside the aging population and health care able to treat so much more and extend life - but social care hasn’t kept up. I’m not sure what the answer is, but something needs to change. Unpaid carers save the tax payer circa £28 billion per year and counting by delivering the care. If we don’t help these mums and unpaid carers more generally to avoid burn out it’s going to cost so much more - financially and the human / family cost which you can’t put a price on.

Barely. I'm very lucky that work are pretty flexible, otherwise I would have had to quit years ago. Biggest issues are school transport refusal, no suitable wraparound care, no suitable holiday childcare, appointments and complete school refusal.

I will add that I have had to significantly reduce my hours and take a lower grade position but I'm happy to still be working.

My partner works full time and has ND adult son. Going into college this month a 40 min drive away. Local authority transport won't be ready until the second term meaning he has to get him there and back somehow and work during that time. Still not sure how that's going to work.

Snap;the childcare barrier when you have a disabled teenager is nightmare;I still need childcare for my autistic 15 year old.

It's not impossible, but our quality of life is better for me not working. DH works long hours. There's no family support. When your child is autistic (even at the end where they can regularly attend mainstream school with little intervention) there aren't the mutual favours with friends to get you through things like INSET days. My job gave as I was too stretched and wrap around care was more than DS could sustainably cope with after yR.

He's a teenager now. I'm fortunate that he doesn't need 24/7 supervision, but the amount of time I can leave him for is limited by the fact that he won't register hunger/ thirst, and he won't prepare food for himself. He has a lot of fear about heat, and sharp items. He's also dyspraxic with poor organisation and hand strength.

He copes in school, but that's with a lot of down time, quietly at home. Things like doing the school run saves the additional load of catching buses at peak times. Without that level of support and down time, the wheels could fall off quite easily. (This evening he reached his limit at an event that he opted to go to and we had to leave when he got peopled out and started headbutting a building as a stress response)

I could hypothetically work from home, but that's not viable within my original sector and the thought of living in my workplace is abhorrent. It was awful when DH's company comandeered our home in the Covid years. I suspect that I may have ADHD and the thought of constantly battling myself and clashing work/ domestic commitments in my home space and having no physical boundaries is something that I would have to be totally desperate to endure. I already feel like I'm permanently trying to coax my own ignition into action.

We've also had a couple of school years where DS2 has had health issues affecting his attendance to the extent that would really test the patience of employers (even if sharing the load with DH where possible)

Good subject for your research.

DD1(14), ASC, EHCP, EBSA in MS.
I'm perpetually worried I'm going to need to abandon my career to 'electively home educate' nothing elective about it, as DD is not coping in MS and has been out of school for long periods in the last 18 months. The new attendance regulations which came into effect last month look set to see me repeatedly fined, prosecuted and potentially imprisoned unless I deregister my child. The stress of this is pernicious and ever-present. The irony is that I'm an experienced teacher in a leadership role, adding great value in my local authority ‐I really would be a loss to education!

Adjacent stresses of SEN parenting are all the administrative loads; I'm currently appealing EHCP funding and it's brutal. I constantly feel as if I'm pot-holing with a failing headlamp or similar: scrambling around in impossibly tight spaces with limited time and looming threat ahead if I fail. The pressure is immense. It's been like this for years: fighting every step of the way to just remain standing and stay safe, let alone move forward and thrive. I really think it's taken a toll on my health ‐I'm noticing a definite cognitive 'dulling' and sad little anxiety responses such as a racing heart when opening my laptop, (for any purpose, even checking the weather forecast), and flinching at the sound of mail or phone notifications. I can't rationalise it or reason it away. Always exhausted.

My 10 year old is autistic. She has not been able to go to schoolnfor several months. Before that ...she had not.been able to access any after school clubs or holiday clubs since she stopped going to a childminder at about 4 years old. She was too stressed and exhausted at the end of the school day

Her not being in school and the fight related to trying to get her an education is of course incredibly stressful
I sometimes feel like I'm having a nervous breakdown to be honest

I am with her 24 7 . I sleep on her floor. I'm frazzled. Exhausted. Constantly with her and barely a minute to myself

I am in theory a self employed creative but barely able to function professionally

When my son was a toddler it became clear he was nd. I was working in a stressful job as was dh. Childcare was amazing and nursery voluntarily provided 1:1 so that helped but ultimately we couldn't cope with the lack sleep, constant stresses, the meltdowns, routines. In the end I gave up work so I could focus on ds and dh could provide. We were lucky this was an option.

As ds has got older it's got harder, he goes to school but sometimes needs picking up if he's struggling. He also sometimes refuses to go to school and can take me a couple hours to get him there. Plus medical appointments and his very specific schedule that needs to be adhered to.

I do work very part time (about 8 hours a week) for myself but it's hard. My emotional capacity and energy levels are low I don't have much to give to work.

We can afford it but I wish we could save and make changes for our future.

Two ND DC here, both of them have had periods of regular school refusal (since primary age), and then in secondary having to withdraw them from mainstream school for the sake of their mental health, as they weren’t coping at all. This happened in year 9 for DC1 and year 8 for DC2. Then followed by lengthy periods of being out of school
while I battle for EHCPs, still ongoing for DC2.

Regular meetings, having to drive them as they can’t cope with public transport, so much admin for education related stuff and benefits related stuff.

General day to day support for both of them, my eldest is now 20 but both DC still very dependent on me for a lot of things which others their ages would be managing independently. And for company, as they are both quite isolated socially.

Also my own health which has taken a nosedive, partly because of managing on my own with ND DCs and all the stress that has brought to me.

I do work self employed from home, but very part time.

I had a breakdown when my son was two. I'd never had mh issues prior to that. Since then dh and I regularly struggle with mental health due to lack of sleep/stress/meltdowns/constantly having to manage our sons world.

I have worked in the.past for a flexible employer (part time only with lots of WFH) but following redundancy, I have not been able to find a job. DC1 is a teen with complex learning needs and ASD. Needs 24/7 care and cannot leave the house alone not can be left alone at the house. There is no wrap around childcare and nothing during the school holidays. Absolutely nothing. DC2 has HFA and severe mental health issue. Loads if anxiety and SH. Often unable to go to school due to anxiety. We also attend weekly camhs appointments currently. In summary, I need a part to e job which I can do from home in school hours, with 13 weeks annual leave and where I can take as hoc a day per week off to attend hospital (or collect DC2 fron school - happens often these days too when they have a particularly bad day). I have no family and no support network. My previous job was very flexible and I was able to work the hours back at night when we had appointments or incidents during the day. I was able to WFH in the school hols (it was hell though and I got ill from the stress at some point). I have been looking for a while for something new but no luck yet.

I don't work because my son (ASD and a severe learning disability with challenging behaviour) doesn't have a school place. Dh has also had to reduce his work hours.

Absolutely this. My 12 yo is similar and I work part time, 3 days a week, because otherwise we simply wouldn't have enough annual leave to cover the school holidays as he needs 1-1 care at all times. There are no holiday clubs for children like my son. I'm only able to work those hours because my husband works for an organisation which is a ten minute walk from our house and is very supportive (so during term time he can do two of the afternoons) because guess what, there's also no after school care. And I will almost certainly have to give up work when my son finished education, which makes me so sad and will cause us huge financial pressure.
I think to be honest the catch all of ND/SEN can be unhelpful because the "severe end" of the spectrum is forgotten about and so most people, even if their SEN parents, don't have a clue how big the challenges are when you have a child/young person who will always need the same level of care as a toddler.

That's awful. 💐

I was able to work once (for about 2 years) in the many years since both DC diagnosed. The only way this worked was when both DH and I had extremely flexible, WFH white collar jobs, I took lots of unpaid leave and the kids were able to go to school. It was wonderful - fulfilling, loads more money than we're used to and I felt more like myself than I had for years.

Then one DC couldn't attend school and hasn't been able to since. That combined with the appointments and the lack of childcare have made it completely impossible to work. I am very sad about this.

Completely agree.

Also, it's become almost taboo to point out, there's different levels of SEN. I understand why severity and functioning labels are problematic but this whole shift is extremely isolating to families like ours. Where neurodivergent people with lower support needs were once shut out of the conversation and ignored, the opposite is now happening.

We have no way of getting childcare at all, it doesn't exist.

I went out to work when my sons (both ND and/or other additional needs) were younger. Their mental health crashed in Y8/9 and 10 and they stopped attending school. After that, I had to stop going out to work, but I was able to work from home (I work in education).

I am so fortunate that my main employer is very flexible and I have a great amount of autonomy with respect to how I structure my day. My other employment is freelance or zero hours, so I am able to take on more or less according to other commitments.

I had to continue working because we would not be able to survive on Carer's allowance and other payments.

Basically, all I have done for the past 10 years is work and care.

One of my children has ASD, attended a special school and had severe behavioural challenges. I worked throughout his childhood but only because I was lucky enough to have significant support not available to many families..

My DH worked from home with a flexible, self employed job, so could be at home before and after school, and then was at home as the main carer during several periods where our SN child was out of school placement.

My mum also lives locally and was pretty much a third parent. And she was young enough when he was a child and at his most challenging ti cope with the energy levels he required. In her 79s now (DS is an adult) and she wouldn’t cope with it now.

There was no childcare available otherwise. No after school clubs or hobby clubs could meet his needs. No holiday clubs. He even lost local authority transport to and from school eventually because he was ‘too challenging’ for the staff to cope with.

I was part of a SEND parent support group when he was young, and the vast majority of mothers didn’t work. It was just too hard.

Work saved ny mental health, to be honest. It was a mental break from the relentlessness of parenting a child with significant needs and I kept an identity separate from being a ‘SEND Mum’.

This is so well expressed. Thank you for the thread, OP, I know it wasn't the purpose of it but I have found some solace in reading about others' experiences and knowing that I'm not alone (although I wish it were easier for all of us!).
Family support is another huge thing that people have raised. My parents look after my younger child on a weekly basis and had her each day for two weeks of the summer holidays. It's lover for all of them.
They can't look after my profoundly autistic older child (12) for five minutes. You need to have lightning quick reflexes, a good sprint time if you're leaving the house, and considerable strength, and they're in their 70s now. If my kids were both non-disabled then childcare would be a breeze as my folks would love to do it 🤷🏽‍♀️

Same, it's been brutal.

Too bloody exhausted. None sleeping kid and I'm disabled too.

As others have touched upon, school 'refusal' (inability to cope with the school environment) has been the biggest one for me. I have continued to work part time mostly from home but it's a tough balancing act.

When my dc was in school:

-on a very reduced timetable, 50 mins - 1.5 hours per day. The timing changed every day so no predictability whatsoever
-very frequent medical appointments
-wouldn't go with anyone else other than me, so even if I had support it wouldn't work

Now they have left school:

-very frequent medical appointments
-very sleep disrupted, so cannot wake up before midday, so too late for day centres (not that they'd go anyway)
-cannot be left unsupervised
-needs a lot of emotional support, I can't be too far away

I have a profession that requires post grad qualifications, but no way of getting back in unfortunately due to dd's needs. £81.90 per week 'salary' for me for the forseeable future in the form of carer's allowance.