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

DD is 10 and luckily in mainstream with diagnosis of severe ADHD and suspected ASD. Husband also has ADHD.

the pressures I’ve experienced:-

Lack of family support, we have no family nearby. Few close friends but my DD isn’t able to access “normal” social activities without a lot of support which takes time. Also impacts my own friendships and relationships- people just can’t adapt or accept DD so I’ve lost friends. School friends are a rare thing and school gate Mum friendships also rare, she is not included in a lot of birthdays etc.

I gave up work 6 years ago to start my own business, one of the reasons was flexibility for DD - support before and after school, appointments, etc etc. Also gave up being a youth leader at a hobby, as she couldn’t cope with the hobby/group setting. We don’t socialize in the evenings, no pub socials or meals as too much for her.

Anxiety and worry - she is more vulnerable, I worry a lot about her future and the constant fight for support. We are trying for an ECHP but the barriers seem huge.

So impact psychologically is fairly huge. Loss of professional identity/having to start again, loss of friendships and relationships, loss of time, lots of anxiety and worry. My mental health has been shaky and it impacts my physical health as I am an emotional/comfort eater. I don’t sleep well. Also can be very isolating. We get through as a unit, I have started HRT and have 2 hours every Sunday to myself for a new solo hobby. School SENCo has been very supportive and we have a small group of supprtive friends.

I gave up work during covid as my youngest's needs meant nursery wasn't possible and grandparents were at risk due to age/vulnerable health conditions. Since then my eldest attended school on a reduced timetable for a year, then spent 9 months out of school completely and has just started a new specialist setting where he's only attending 2 hours per day as he works upto going full time - this could take most of this academic year. So if I hadn't had to stop due to covid I certainly couldn't have continued over the past 2+ years. Then as others have said needing to be home to receive youngest from transport from 3.15 as no wrap-around care and I don't know how I'd work. I am completing SEND law training though and intend to initially volunteer helping parents navigate the EHCP system and eventually possibly become self employed offering EHCP checks/drafting advice and tribunal support. I miss working as it used to form a huge part of my identity but it just isn't feasible right now.

I came close to a breakdown about 18 months ago.

Part of that was worry about not performing at work.

I told my boss that I needed to move on and explained the state I was in. He just told me that I needed to do whatever I needed, approved another staff member, and generally reassured me that I’m not a flake and that I do a good job and that the flexibility I need is there for me.

I work part time. I like my job and feel it has value (I work in a public library) but I earn a lot less than if I had been able to continue my earlier career. My daughter has autism & severe LD. I did not return to work, after having her, until she was seven and got a place in a special school. I can only work because my husband can work from home on days I work and be there for my daughter after college, in term time. In holidays we use direct payments for a carer. My daughter cannot be left alone. She is 21. I feel out of step with my friends who have children now leaving home, starting their careers, embarking on relationships. My marriage is put under stress, we don’t get enough sleep & my husband & I put our daughter’s needs before our own to our own detriment. There is always admin related to my child’s needs. Life is stressful. But, my work is good for me. It is an identity outside of that of carer or parent. I think the fact that my job is one that is seen as beneficial, is sociable and utilises all my skills gained from being a carer (able to signpost others,empathy & so on) is key. I also leave my job at the door, it does not impinge on my home life at all. That is key.

I stopped work when DS was 5, and went back part time when he was 12. Term time only as holiday childcare would be impossible for him and only possible at all because I have a good support system and a very understanding headteacher!

One of the biggest barriers for me has been the randomness / unpredictability of my ND DCs’ needs. Sometimes they could cope with e.g. going to school. Other times they would refuse, or I’d get random calls from school saying I had to pick them up immediately etc etc. Now that they are older they can still sometimes cope with work / education but it never lasts for very long, and I need to be there to pick up the pieces. Every time I think they’re on an even keel & have found their groove, it goes wrong and they need to be at home doing nothing for weeks/months. It’s draining and soul-destroying and has shredded both my mental health and my financial stability. Employers can’t (understandably) cope with an employee who may or may not show up for days on end 😢

I have two children with ASD both have EHCPs and both are in specialist settings.

I work 30 hrs a week and that’s quite tricky. The only way I manage is with a proper partnership at home with DH, family support from PIL (and my aunt a few years ago), a cleaner, a part-time nanny, and a very understanding employer.

Additionally I earn decent money which means I’m not just working to pay childcare - if I earned less well it would be a slog for no reward.

The hardest part has been the illness - both of my boys have ARFID so poor diets make their immune system crappy coupled with the immune issues that come with ASD. It has not been uncommon for me to just be off work for days at a time as the boys get sick and then I get ill after being so run down.

I have low mood, poor health, I don’t prioritise myself and I’m exhausted. Antidepressants are required to function normally.

Oh yes, flexible term time only hours until last year. It didn’t work when I went to less flexible term time only, had to withdraw. Now not term time only but v flexible and wfh.

I have children with additional needs. I work part time in a job where I choose the days / times to suit so I can work around appointments / school meetings / illness. I gave up my career and work at something completely different as the sector I worked in is not flexible enough.

In terms of mental health, I volunteer in a few roles - because I need something outside of my family pa work! Again, flexible enough that I can fit round everyone else's needs.

And I make sure to have friends in a similar situation as a support network. This is really important - being able to share your frustrations with others who understand.

I do work, but not full time and my job was chosen based on the hours that work for the kids (overnight, term time only), not the job that matches my skills/qualifications. As a result I'm paid much less then I would be if I still worked in my per-children career.

Child care is the main barrier. Technically DS's school has an afterschool club that is inclusive (it's a ARP, so higher proportion of SEN). But although they would take him, it wouldn't be in his best interest to go. He only just copes with the school day, any more would overwhelm him, and probably reduce his capacity for managing at school.

Other barriers would be getting time off for all the meetings and appointments, finding time for all the extra admin (DLA, EHCP, referral requests paperwork).

I've just recently quit my job because my daughter has too many hospital appointments and in hospital very often. The school call me a few times a week to help her (personal care needs) and it just became unmanageable with work.

Plus all the time she has off sick from school, it's really hard and I feel like I'm trying to walk through thick mud everyday.

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.

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

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 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.

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.

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.

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.

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

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.

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.

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

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.