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?

I couldn't work until I managed to find work form home. My sons have both had so much time off school and need support day to day. Working is awful because I don't really have the time or energy for it.
Properly funded services would help, we've had to spend thousands on additional support. So would joined up services so you don't have to explain everything to every member of NHS and education staff you interact with.
Time off and sleep, and not having to worry so much and fight for everything would save me from hurtling towards burn out.

"Thanks all for sharing.
I wonder what practical solutions you think would help to improve your mental health?"

For us a school place. People assume that yp with severe needs will always be accommodated in a special school but there is a growing group of children with very severe needs who don't have a place. Those children used to go to independent special schools but there is such a demand for places that schools aren't taking the most severe because it makes business sense not to.

I’m thinking of joining the council gym but you get penalised for missing classes though which worries me.
I don’t want to volunteer, I did a lot in my youth and ultimately didn’t feel valued. Doing more unpaid work isn’t of benefit to me.
Carers Allowance needs to be a lot more, DLA should run until you are 18, especially when they want people in education.
Schools need more support staff, it’s them that have helped get DD into school and lessons.

I have a disabled daughter who is now almost 20 and have never been able to work due to the vast amount of care and support she requires.

My main barrier was limited support for childcare especially when grandparents were working. Although my now ex-partner and my Mum had days off during the week they tended to vary and I could not guarantee someone would be available at short notice if I needed support e.g. my daughter was poorly or school was closed due to snow etc.

Appointments and meetings around her care and welfare, annual reviews of her EHCP when she was at school etc and having to take time off especially if there were a few appointments in succession. Again due to not always having the support available on tap I would have found it difficult to ask either my ex-partner or my parents for help. When my Mum was working she couldn't attend appointments with me or on my behalf and sometimes my ex had to rearrange shifts and could not always guarantee this happening.

My daughter has displayed challenging behaviour and can be difficult to manage. At worst she needs more than one person to be able to manage her, my Mum and Dad usually look after her together and although I am more used to dealing with her on my own than most people I still need support and respite so I can get things done or spend time with my younger daughter. As she cannot always express her needs clearly, people who do not know her well are quick to assume she is unwell, for example we had carers bring her back early or leave when they have struggled to cope with her.

My concern has always been that if I had a job and was often needing to take time off/leave early/arrive late for appointments or childcare emergencies, a potential employer may make allowances to a point and then get fed up with me if it appeared that I wasn't committed to the job and they may dismiss me.

I have one with autism and one with adhd.
I have had to give up work due to them not being able to do afterschool clubs, anyone else have them.
they go to mainstream school, however the autistic ones masks and then as soon as leaves school grounds meltdowns and turns violent. It may seem to others that he is not that bad but they don’t see him at home.
my adhd one doesn’t sleep very well and is up and down all night.
combining the two has left me physically and mentally unable to work.

My youngest has ASD and ADHD. I always worked but was very part time (between 10-3 a few days a week) at primary school, term time only. He hated breakfast and after school club when we tried them. We ended up employing a nanny so I could extend my hours a little and that worked much better. She is wonderful with him and we use DLA to pay for her. When Covid happened my DH was moved to wfh and that made all the difference as he could take on so much more care - before he was out pretty much 7-7. My son also moved from mainstream to specialist for secondary which hugely improved everything - he was only attended primary part time by then 4 mornings a week, but in specialist he’s always been in full time. With the help of the nanny and my DH wfh I was able to restart my career and work full time. Our only problem now is that he doesn’t really need our nanny anymore but she’s like a security blanket for him! I gently suggested that we could drop a day and it did not go down well! She does 3 afternoons a week for us now, and she’s really flexible with sorting out tea (knows how to cook the favourites), can always deal with a meltdown (very few now), sorts out his uniform etc and all the washing etc.
I’ve really enjoyed the opportunity to do more at work, sometimes I mourn a bit at not being able to go for different roles for so many years and obviously my pension took a big hit from working so few hours, so whilst other peers my age are starting to think about retirement I need to get in my contributions until 67. Mainly I’m just really relieved that our nanny came into our life and was the right person at the right time who wanted to work with an autistic child and was unphased by the challenges. Without DLA and my DH working from home I would not be able to work like I do.

Adding - no family support at all. My Mum passed away 20 years ago, my Dad wasn’t up for regular childcare and Dh’s parents are in their 80’s.

For me, I wish school had been able to put in a lot of support as soon as my DD started struggling to attend. I felt like it was all the wrong way around - once it had completely unravelled, they started offering some of the support I'd asked for at the beginning but it was too late by then. It all came down to lack of resources. Which is ironic given that she's costing a lot more now as a result (EHCP, PIP, CAMHS etc).

I also feel there is a desperate need for small, predictable schools/colleges with for ND children/young people who can achieve academically (whether that be to a greater or lesser degree) but who just cannot cope in a mainstream environment.

Going back even further, I wish supports had been put in place for my daughter early on when for example her sensory difficulties and OCD were first identified. I also wish someone had suggested autism to me early on when I raised her difficulties, rather than letting her fly under the radar because she was the model pupil or because they didn't like to say. This relates to health services too, not just school.

So basically, improve outcomes for the child (ideally with early intervention) and you improve the outcome for the parent/s in terms of being able to work.

Counselling for parents would also be gratefully received as it's a lot to process when things finally fall apart so spectacularly. The day to day stress of caring for your child and fighting for services makes working (especially in a high stress role) hard to cope with at times and an outlet of some kind is definitely needed.

On what would make things easier - having them in school, having wrap around care that can meet their needs, and having transport to school. If they are in school that gives me time for work, self care etc, i dont need any free services. Just time !!

Childcare specifically for kids with SENS would have made the biggest difference to me working more hours - it would have had to be subsidised to allow 1:1 support or whatever is needed (obviously using the child's DLA money first but I think it would cost more than just that). My DH and I both work part time though as I think that is a very fair way of doing things and allows both parents a break from caring whilst fully understanding the challenges of both roles. I think things that can support both partners working part time would be really helpful such as shared maternity/paternity leave (not available when we had DD but might be now), help with housing costs so 2 full time incomes are not needed to house a family, flexible working etc

There are formal groups for carers where I live but I found some likeminded SEN mum friends which was great, I had support from DGM (not for childcare but in being very positive about DDs achievements) and made time for exercise - you can get yoga online for free and I tend to run in the park also for free. We used DDs DLA money on our own self made respite breaks which were great and involved one parent taking one DC away for a weekend in a nice hotel every 6 weeks or so - we alternated who went.

Finally, the thing that really saved my mental health was using DDs left over DLA money to employ an educational lawyer so we didn't have to have the hassle of dealing with the LA about her educational placement. It was a massive weight of my shoulders and greatly reduced my stress levels because when the LA ignored reasonable requests from me they caved instantly at the lawyer's letterd.

I think the biggest issue problem the LA's face is that they have no money and very few people want to be SEN support workers. That's why there is very little SEN wrap around care of holiday clubs.

DS is 11, was diagnosed just over a year ago with ASD. I'd always had concerns about how DS was doing socially, but it was the return to school post Covid and his increasing inability to cope in that environment and increasingly violent meltdowns that led to the school agreeing a referral was appropriate. Eventually DS was unable to attend school at all.

I work pretty much full time. The reasons I've been able to keep my job are:

• working from home since 2020
• my job is flexible and my employer has been supportive
• DH was made redundant in 2020, is essentially self employed so between us we can juggle our hours around DS

For a couple of years we had a lot of appointments, sometimes three a week, between various services seeing DS and/or us - we had careers assessments, parenting support, OT, CAMHS, counselling, TAF worker, engagement team, meeting with the school. DS has sleeping difficulties, him being prescribed melatonin has made a huge difference to our lives.

DH has had to turn his hobby into a job to try and earn enough to cover his costs while I cover household stuff. He takes DS to school/picks him up when he'll go, school attendance is improving so we're hoping eventually we can use transport provided by the council but we're not there yet, looks after him if he didn't go. He also takes him swimming so he'll shower/change his clothes. I take over when I finish work, do the bedtime routine (he won't go to sleep on his own) and get up in the night when DS wakes as he won't settle with DH.

There's a very real possibility I'll be out of a job next year - I work for a charity, we may lose our funding - and I don't know how I'd get another job that gives the flexibility and support that this one does, they've truly been amazing but I've been there 20 years so had already proved myself before all this.

I have 2 YP, aged 19 & 17. I have not been able to work since they were born. As children there was no suitable childcare (high distress due to ASD meant local playgroup / childminder sent them home). Then years of daily contact either school, medical appts, research, paperwork, Child DLA etc etc) plus the fact they didn't sleep, bolted etc. ExH refused to do any 'childcare' at all. No family around. I did work for 6m both YP became anxious & depressed. I stopped. So: barriers: lack of reliable Partner, poor support from GP. Awful school experience. Rural Location. Effects: long term for both physical & mental health for all 3 of us, struggling alone instead of being able to access decent support. I now look 70 not 50.

My son is 21 with PWS and Autism. I am a lecturer. I went back when he was a baby. There was a nursery on site with brave, compassionate staff who supported us. Also more money in 2003 for additional 1:1 support. Nursery now closed along with others so if I had him now I wouldn't be working. Primary and Secondary was hard - my son has lots of significant behavioural issues that school found difficult..but I kept working. Used a childminder but always felt I had to be extra grateful for her having him..she made an excuse when he was 7 not to take him anymore (but really he was just not good for business). Reduced my hours at this point. Post sixteen was better, by adult social care I was part-time. What makes work difficult..I had an unhelpful employer but just had keep going. As he got older services got less- from 16 plus no service started before 10.00 and then finished at 3.00. All services (Inc school) presume that you don't work and cancel support at the drop of a hat. Also the services are so poor. He can manage money but is not allowed to take money with him because the support workers refuse to supervise his spending (he has no capacity with food but they still let him buy food) - I fear for the future. In addition we have never had family support (sadly all died before he was born) and friends fade away once he got past the baby stage. It's just me and DH but we manage and we do have a good life. What helps? - I sigh when people suggest yoga, walking, swimming...life is just too exhausting. Also you can't just pop out for a swim in the evening - how does that work?

I work 3 days a week. DD is in year 11.
Reasons, she trashes the house so I need lots of time to keep on top of it, I spend a lot of time chasing various services for support, catch ups with school, making sure she does her on-line learning.
She didn't sleep until she was 8yrs old, I had to drop out of OU because of it. I needed to keep my paid job more.

I may increase my hours by a handful next year when she finishes school and even fewer services will bother about her.

My dd (14) has Complex Needs, including DS, ASD and Severe Learning Disability. I made some plans to go back to work when she started MS school - I was a teacher - but she went through a v difficult phase with CAMHS involved, not sleeping - we were under the sleep clinic - refusing to eat and drink and I had to battle school about unlawful exclusion, as they kept phoning me up to take her home.

I started volunteering in school and registered for supply teaching and then it was lockdown. Dd has a massive crisis in lockdown and we've had a massive crisis again this last year. So, sleep deprivation, poor mental and physical health, a child needing at least 2:1 care means no chance of work. Tbh, teaching when I'm already in burnout is not an option. The lack of funds at school has meant the after school club they ran has stopped and they are finishing early one day a week. In real terms, we've lost 3.5hrs a week, she was at school.

Add all the meetings and appointments as well as chasing appointments and professionals and it's relentless. I agree, it's such a waste of skilled, professional women (usually) who are not contributing back to society.

Great topic for your Master's research! What research methods do you think you might use?
I have 3 DC aged 13, 11 and 7, all autistic, all currently in mainstream education. DS2 also has continence issues and an EHCP. I took a career break after returning to work 70% FTE when DS2 was 1 nearly broke me. Managed to return 50% FTE during term time once youngest DS started school. Now at 60% FTE and just about managing.
Barriers - mental load, exhaustion, difficulty getting into work mode particularly after DS2 has violent outbursts, feeling "on edge" waiting for that phone call from school, admin and emotional burden of appointments, forms, fighting LA for support etc.
Facilitators: great DH that is fully involves with DC and all housework. Fortunate to be supported to return to work (scientific research) with a fellowship that meant that although I am hosted by an academic institution it was up to me how I get my hours done. I realise I'm in a very privilaged position to be eligible for and get this OP look up the Daphne Jackson Trust - they have done research on returning to the workforce which could be useful to ypur project daphnejackson.org/). DLA covering extras such as assessment by sensory integration trained OT for the DC. We have not managed to find any holiday childcare so provision of that would be helpful, but really a nanny who could cope with DCs needs would be the best option as getting them out of the house is exceedingly difficult. For this reason although DS2 is eligible for "short breaks" he has hardly been on any. Plus since services for different aged children are at different times of day it doesn't really give us much of a break and just more taxiing for me.

I'd say I have access to all of these - it's the kind of thing I spend my time doing during school hours. But it's at the opportunity cost of working. For me it's better to spend my time doing activities for wellbeing rather than working. I've done an OU course with all fees paid as a carer. I have a council leisure centre membership for £10 a month (cheaper rate for disabled people, as I'm disabled as well as my DS) and it includes as much swimming, gym and classes as I can fit in.

One thing we did after lockdown was join a gym together - we realised we never did anything together and we were getting so broken. We’ve kept it up since Sept 2020. This is facilitated by our paid for by DLA childcare - we go in the last hour she is with us after our work 1 day a week, and by our older children (now in their 20’s) who can help. We also try and go for a walk every weekend, again our adult children could help and now our son is in his middle teens he can be left alone for short periods of time during the day (would not come with us). Before this from 0-11 we never did anything together, as one always had to stay at home. It wasn’t good for either of us, and my health was really suffering - I put on a lot of weight and was very unfit. I tried outside childcare (various clubs) but he always hated them, and the organisers would always find a reason why they did not want him to come. The only one which worked was a Council run one where as they weren’t ‘for profit’ they had that extra leeway on helpers and they were expected it to be inclusive by the council, so there wasn’t that sidling up to you at home time ‘to have a little chat’.

I have access to a lot of the above too ^ but it's no substitute for addressing the real issues of:
• proper respite (not activities you can take your child too, but actually involve you as their 1:1 carer)
• wraparound care
• early access to services eg speech therapy, school places etc that help children with SEND be as independent and have as good mental health as possible
• appointments outside of working hours and timely
• reduction in unnecessary meetings
• services actually doing their jobs and not needing constant chasing up

I'm lucky enough to be able to work school hours during term time (I'm in the Civil Service). I honestly don't know what I would have done if Covid and home working hadn't kicked in just before DD, who has Down's syndrome, started school. Although she was part time at nursery before, I think we hadn't considered the logistics of the school day (my MIL used to do the childcare on 2 of my working days but wouldn't have been able to arrive early enough to do the school run).

School hours work great as it means I don't need to stress about DD being uncooperative during pick up or worry about needing to log back on for meetings on my return, but I am conscious about how it's affected my career. And work are starting to be difficult about going into the office, too (I'm in the process of completing a carer's passport).

Mental health wise I'm feeling pretty shit though to be honest (but only part of that is to do with work).

I think your point with wraparound is interesting, but it extends.

One of my barriers is my LA's policy on school transport for students on reduced timetables. My son is not able to attend school full time, due to school not meeting his needs. Not only do we not get wraparound, but we lose school transport too. So the only way he can go to school is if I do the long drive, there and back, twice a day. Basically I spend my life driving him. Some days it's literally all I can do.

The LA's policy is that they only provide transport for students who are attending FT. If your child can't do that, even if it's because LA is not providing a placement that meets their needs, they will not provide taxis or even pay petrol costs. It's disability discrimination. He is in secondary school and if it weren't for his SEN he'd have been walking to the local school independently for years.

Another thing it may be worth looking into is where the support comes from to allow people with care needs to work. The only reason I have been able to return to work is because I have a lot of family support (single parent amazing family!)

if I didn’t have two reliable relatives who can step in for school pick ups and look after ds (14) when he is ill I couldn’t work. There is no wrap around or holiday clubs (I’m term time only). The only respite comes from family

I dont work. I’m a lone parent and DD hasn’t been to school since summer 2022 so she’s at home full time gets hrc lrm dla. Father not involved and no family. She can’t attend any form of childcare and would be too old now for them.

In an ideal world, I think giving parents of children with significant needs some sort of weekly respite would be beneficial.

Something that must lead parents to despair is going through the fight to get respite, finally having it agreed that they do need and qualify for respite, to then only be awarded a pathetic 3 hours a week. Then to find out that it’s impossible to find anyone skilled enough to do the job because the pay and the hours aren’t worth it. Or they get given a day or overnight respite place at a facility that has a five year waiting list.