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

[TyraBanksEyeTwitch]

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?

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.

@Polkadottablecloth thanks for replying. My child doesn't have too many appointments but the admin Is vast, for an EHCP etc.

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.

@Polkadottablecloth when you didn't work, did you feel that people 'got it' or did they not understand the difficulties?

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’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 .

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 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!

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 .

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

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.

I quit my career I had worked hard to qualify for to work in poorly paid term time only jobs. It takes two of us to do school runs and my kids don't cope with after school clubs or holiday clubs and we have no family so I can also only work school hours further narrowing the pool of jobs available. I'm so fortunate to have found a job but I know lots.who can't or some who have to work as meal time supervisors as the only job they could find that fits. It's so hard. The holiday clubs round us are all sporty and clueless at supporting SEND or making adjustments so no good for my neurodiverse kids. Dm me if you have any questions.

@x2boys I think this is the crux of it. A lot of children have autism or adhd diagnosis now and it is a spectrum. If your child can go to holiday clubs, go to afterschool clubs, go to mainstream school without issue, that's a whole different experience to someone who's child has higher needs, or perhaps you have no support network, or you may have mental or physical health conditions yourself. There's a real risk of someone assuming because one parent of an autistic child works, then everyone can. But it really is very dependent on context.

Husband and I both worth but it is a big juggling act. The time needed for paper work and admin for appointments is huge, especially when every service has long wait times when you call only to be fobbed off. Sleep is better than it used to be at least

Interesting topic for your Masters ( just finished one myself looking at mental health ) Good luck with your studies and just a few random thoughts below :

Lack of sleep and permanent exhaustion - makes decision making and daily functioning difficult

While you might be eligible for social services support often it isn’t available as the services are so stretched so you can’t rely on it to provide the care needed to enable you to work and be reliable

Being the hub of organising and co-ordinating medical appointments / assessments. Often there is a logical roadmap for these but unless you organise it social / health care won’t and you just end up with an endless stream of appointments / trips to the same place - difficult to manage around work commitments

Feeling of helplessness - you are having to be an advocate 24 x 7 and can’t get the appointments you need / people to understand - guessing this is particularly difficult for parents trying to get statements etc. which they help get the school / nursery support they need

can’t get full time nursery care as DC has to have one to one support and there is no cover when the key worker goes on holiday ( happened to a friend so DC suddenly was at home for 6 weeks during school holidays )

Lack of family support. Family members feel ill prepared or unable to care for a ND child , so family care is not an option which it otherwise would be.

Guilt - if a family has one ND child feeling other siblings can lose out if more time and focus is needed for ND child - trips out might get cancelled / difficult to commit to getting them to the sports club etc.

Lack of support from Partner. Sadly much care of an ND child falls to the mum they are expected to be care lead

Other caring responsibilities : Elderly parents with increasing needs and demands.

Personal training / profession / job history : if background is customer / front of house facing such as sales / retail / healthcare - more difficult to manage in a job than a role which enables WFH and the associated flexibility to get jobs done during the day i.e. put the washing on while making a coffee , hanging out the washing at lunch time etc. to optimise time.

I’m sure there are lots more but hopefully a starter for 10.

I think it's important to also take into account the severity of and Send.

Having a ND child who attends MS and doesn't have or need an ehcp is very different one who cannot be left unattended for even a second.

I'm a LP. Ds with physical disability and autism. Had ehcp which I had to fight for.

I've worked in education to have the school holidays at home with him. And to work school hours although our ASC was run by local surestart centre so he could access that as they were ND and send aware.

However, it has meant I couldn't pursue a career because although I did a degree with OU I couldn't then take on training to be a teacher as the funds just didn't allow this.

So whilst we are happy and I love my job there are many ways which people are affected even if they can work.

For those with severe send there just isn't the warps around care available and even if you employ carers etc the cost is phenomenal, they need specific training and they aren't always reliably available.

I think this is a really good topic to do a piece on.

My 8 year old experienced traumatic bereavement when he was 4 and had severe separation anxiety throughout Year 1 and Year 2 which led to issues with school attendance. He may or may not also be neurodivergent. I was pretty much forced out of two jobs that couldn't accommodate our needs (I'm a single parent and also ADHD myself) and I ended by deciding to go part-time and much more local. It's been a huge drop in income but both mine and his mental health has improved hugely

My DD is in her 20s now but DH and I have both been part time at work since she was born (disabilities detected before birth so we were prepared). Main barrier to full time work has been that she could never have gone to any form of childcare and even a special school struggled to cope with her needs. We have lost so much money on our careers both being part time but I am glad we both shared the burden as I couldn't have done a carer role full time and maintained my mental health.

Youngest periodically school refuses. Rarely any notice there will be a problem when it starts. He also won't attend holiday clubs. He hated wrap around care and was only able to tolerate limited time there.

Meetings with schools and social care.
Covering illness. My dd is 19 but still requires care if she is at home and there simply isn't any
Not being able to go for promotion because you know you need to get home ASAP so can't commit to extra meetings or training

Juggling taxi pick ups and drop offs.

When child is older there are no childcare options at all. Costs of carers are often 18.00 an hour from an agency so unaffordable.

I think there is an expectation that parents of disabled children will not work or will only work part time. Professionals used to look at me like I was unreasonable for working a full time job. I had to if I was going to pay my mortgage.

I have two ND children, one in high school and one who has just left. I'm lucky in that they are both mainly able to cope in mainstream environments.
It's now that DS1 has left school and is working and in FE that the appointments are onerous for him.
I, again, am lucky that I work very part time in the public sector and that my organisation is very understanding about any time off needed. DH works in a senior professional role for a small business and is also able to take his turn with medical appointments etc.
DS2 has ASD and has no medical appointments related to that at all. Diagnosed and left.

Thanks, I've been specifically hoping to focus on maternal mental health after reading a statistic about mothers of children with ASD being three times more likely to suffer from depression. I totally relate to that. I am a single parent and I use all my child free time to work, although I realise I am lucky in this respect. However this means I can't have a night out or even meet friends for coffee easily. It seems like all over parents of nine year olds are getting their lives back but my DD still needs me so much.
The statistics for relationships lasting are also shocking. It feels like, as much as we love our children, a lot of our life is relentless.
The recent surge in not only children with ASD increasing, but the acuity of the ASD traits increasing, means that the country must look at how we can support the well-being of mothers so that they don't burn out.

Barriers for me personally are as follows:

DD not being able to go to school at one point due to undiagnosed autism and adhd.

lots of appointments for physical health issues

DD too drained from school for wrap around care

holiday clubs can be tricky and I’ve no family nearby

lots of paperwork and other draining activities

There’s very little if any support for carers to get decent work.

all this meant I had to decline a job which would have changed my life and I’m now unemployed. I’m in a better position with dd that I could work now but it would need to be from home really or very local and flexible. Unfortunately there’s now a recession so jobs that were around 2 years ago aren’t now.

Another thing is I’ve discovered I have adhd and am possibly autistic. This makes the mental load of looking after a child with additional needs even harder. In addition it makes finding work, getting through an interview and keeping a job harder.

I have a child with autism who attends a special school.

I work term time only, part time (30 hours) and flexibly around my DH. He works from home, condensed hours.

The barriers to me working full time are

there is no before school or after school club, or holiday care that he can access.

He has lots of appointments at cahms and with the OT and at school and lots of admin /paperwork

He rarely manages a full week. In fact for most of the last 5 years he has been on a part time timetable.

I'm tired as he wakes at night.

Things are improving with age so I hope to work more, but I hear post 16 transport is difficult so I might end up driving him to his next placement.

Good dissertation subject

I work part time and am self-employed.

DS (ASD and ADHD) is in a mainstream school, and not always coping very well with it. I often have to drive him to or from school, not necessarily at the 'correct' time. So basically need to be on call all day and need my work to be flexible.

I also have a fair few meetings and appointments I have to attend with/about him.

When he's at home he can be quite full on.

I'm exhausted and don't think I could work full time, I suspect I may also be ND, which probably feeds into my (lack of) energy levels.