Child with complex needs -how do you help your marriage

[Loopyloooooo]

So DH and I have 3 kiddos. Ages 12, 10 and 7. Youngest is DD who is 7, she has GDD, epilepsy, severe LDs, autism, ADHD.

Life caring for her is, quite frankly, relentless. Her care has taken over our lives. Our support system had shrunk to zero. We have noone in the wider family who can cope with DDs needs.

Her medical needs we can cope with but quite frankly her behavioural needs and physical care needs are something else. Just to give you an idea some of the specialist equipment we have includes baby gates every where (at 7), alarms on doors, wheelchair to keep her safe when out, safe space bed, incontinence nappies and changing bench etc etc. She can be violent, her behaviour is unpredictable, thrives off routine and she is unsafe when out. Today for example went on a very rare outing to the seaside. She dragged her shoes over the sand and continuously licked the sand and ate stones off her shoes. We couldn't stop her so put her in the wheelchair and instead she reached to the chairs wheels to eat the sand off them....this is just to give you an idea of how full on she is. She's not even safe on a trip to the local shop to be frank.

We have asked the council for help/respite. We're on a list...

Anyway DH said off the cuff today that the ironic thing is in all of this is that if we split up we could have every other weekend each to not care for DD and time to ourselves. Now he swears it was just idle wondering, loves me to pieces, loves the kids etc but TBH with the way our lives have turned out I don't blame him for his mind going there !

Other couples in similar circs, how do you help your marriages? DDs care is 2 to 1 and we don't have anyone to look after her anyway.

We try to give each other a lot of grace and I encourage DH to go out with friends etc when DD is in bed. A few times a year we will go out for a few hours together when the kids are all at school.

How do other couples keep it together and look after each other?

[OvertakenByLego]

We cope by ensuring DC/we have all the support possible. DS1&3 have excellent EHCPs and we have social care support. We have all the equipment and adaptations needed.

Have you actually had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DD. If you haven’t actually had assessments, push for them - Contact has model letters you can use. If you have had assessment but don’t have support in place, complain. Sadly, it is a bit like EHCPs, those who advocate for DC and enforce their rights get better support. It should be that way, but sadly it isn’t going to change any time soon.

I presume DD has an EHCP? If so, you need an early review. If at any point you appeal the educational side of the EHCP, you can ask SENDIST to look at social care provision too.

[Loopyloooooo]

Hi, thank you for replying. Yes she has a good EHCP and attends a special school for DC with severe LDs.

We have had someone out from the council to assess for respite and they have registered our other kids as young carers. We haven't had a carers assessment for ourselves, apparently that's only done round here if you want overnight respite and that can only be accessed when they're 8 allegedly (plus the local overnight respite was labelled inadequate or needs improvement so not sure I'd want to use argggg) I will have a look at those model letters thanks so much for suggesting.

We already have an adapted house via DFG, equipment and all professionals in place that DD could benefit from. It's just knackering isn't it?

[Loopyloooooo]

Hi, thank you for replying. Yes she has a good EHCP and attends a special school for DC with severe LDs.

We have had someone out from the council to assess for respite and they have registered our other kids as young carers. We haven't had a carers assessment for ourselves, apparently that's only done round here if you want overnight respite and that can only be accessed when they're 8 allegedly (plus the local overnight respite was labelled inadequate or needs improvement so not sure I'd want to use argggg) I will have a look at those model letters thanks so much for suggesting.

We already have an adapted house via DFG, equipment and all professionals in place that DD could benefit from. It's just knackering isn't it?

[OvertakenByLego]

I agree, it is exhausting.

Keep on at children’s services following the assessment.

You are being fobbed off about the carer’s assessment. That is an unlawful policy.

As well as your local Young Carers Service, Sibs may be useful to speak to for your other DC.

[Loopyloooooo]

Thank you @OvertakenByLego it feels better just writing it down!!

Will get on to children's services again and have a look at the social bit of the EHCP, I hadn't realised that could be included on there.

[OvertakenByLego]

Social care needs should be in section D of the EHCP, and social care provision in H.

We have a pub thread in SN chat if you want to join us. Everyone on there umderstands the relentless exhaustion.

[Loopyloooooo]

Thanks I'll have a look at both the EHCP and the pub chat, sounds perfect.

[OvertakenByLego]

Depending on DD’s specific needs, you could also look at whether she is eligible for continuing care funding.

[Quisquam]

That’s nonsense about the carers’ assessment!

Eventually, we got about 54 care hours a week for DD in the school holidays. One carer eight hours a day 10 am to 6 pm, five days a week; two carers for four hours for an afternoon at the weekend (so we could go out on our own) and in addition two carers whenever I had a medical appointment. DD was deemed too stressful for one carer, so it was either one carer with me; or two carers if I wasn’t there. Generally, the carer looked after DD in the morning while I did housework and admin; then we both took her out in the afternoon! They would bath her, supervise her getting dressed, get her meals, and play/read with her.

Those were the hours I chose, because I didn’t want strangers in the house at breakfast; nor did we want 24/7. DH wanted privacy at night.

Trouble is if you separate, one has to cope on their own with her - what happens if you are ill, or need medical appointments, or back up?

[Quisquam]

Also eventually, we got NHS Continuing Healthcare Funding.

[Lesley25]

Do you have a social worker?
They were the ones who sorted out our overnight respite.
you don’t mention carers either, this for us, was accessed through social services.
we self referred when ds was 9 years old.

it’s relentless. Just a hand hold here.

Me and my husband are fortunate that we have a set day we have lunch together every week- this only happens during school time.
we had marriage counselling and that helped.

[Lesley25]

@Quisquam what age was your child when you applied for the NHS continuing healthcare?

[Quisquam]

I did a subject access request when DD was about 18. I found social workers had filled in the initial form 4 times; but there were no indications in her file as to where those forms went, and what the responses were! We were going to tribunal for a year, and I was more taken up with that!

I applied to my local CCG when DD was 20. They rejected it, saying she was the responsibility of the CCG where her school was. They wouldn’t accept responsibility either. I had to write to the Secretary of State for Health to find out who was responsible for her. They told me I had write to NHS England. They ignored my first letter, and I had to write again. Eventually they wrote back, it was our local CCG. That all took 2 years. I guess she was about 22, when the NHS CHC funding was agreed.

All that support was funded by Social Services for the first few years! They also part funded the residential school placement - around £35,000 pa iirc, and education paid the rest.

[Quisquam]

I had an independent social worker’s report for the tribunal. She was quite critical that SS was entirely focused on DD’s disability and paid no attention to her sibling, and the whole family!

[Lesley25]

@Quisquam who are CCG? You’ve had such a battle. I’m assuming the tribunal was for residential.

My sons similar , 2:1 carers and I chose morning hours.

sorry to hijack your thread OP, @Quisquam @Loopyloooooo I’m just thinking if our children are similar , we will also need NHS continuing healthcare, a Deputyship so we are in control- not the LA when they turn 18.
Have I missed any thing?

@Loopyloooooo I started with carers when ds was 9 years old, it makes such a difference and then having respite at 11 , we’ve had to up the carers support year on year, so be prepared for that.

[OvertakenByLego]

CCG stands for clinical commissioning group, now changed to Integrated Care Board (ICB), the people who are responsible for commissioning services for the area.

You can apply for continuing care funding now. It then moves to continuing healthcare funding as an adult.

Once DS is 16 you should also make a credits only ESA claim to establish LCWRA so that you can apply for UC at a later date when DS is still in education. Contact have some helpful information about this.

[Quisquam]

The CCGs were Clinical Commissioning Groups - basically they ran local NHS services in your County, having replaced PCTs. The NHS equivalent of the LA. Sometime last year, they were turned into ICBs - Integrated Care Boards. If you want to apply for NHS CHC funding, the ICB makes the decisions and administers the CHC funding, if you are successful. It’s not much better than dealing with a LA really.

It’s like Professor Luke Clements, top community care lawyer, said:

”CCGs (now ICBs) are good at writing cheques, but they are not good at monitoring placements! LAs (social services) are not good at writing cheques, but they are good at monitoring placements! Most of the residents at Winterbourne View were there on CHC funding, far away from their families!”

Yes, you will need Deputyship, especially health and welfare. Financial is not necessary for DC, whose only income is benefits - being appointee is enough.

[Quisquam]

Yes, the tribunal was for a 52 week residential placement - not that we ever wanted 52 weeks. I wanted about 44 weeks really, but my solicitor advised me, we had to get it established that DD was going to need residential care as an adult. It was never going to be the case, we could cope with adult DD plus a care package of respite, whatever!

[cansu]

Tbh he is right. My relationship was very affected by our son's disabity but I actually think now that I stayed in the relationship as I knew my children would struggle with a split. It also meant that I blamed everything on the stress of the disability rather than see the problems were also down to our incompatibility. In any case I think the main things that help are being on the same page and one person not becoming the default parent who deals with everything. I was very resentful that I took on all the school, social care and paperwork aspects as well as plenty of day to day care. I agree that time off is very important.

[Quisquam]

In any case I think the main things that help are being on the same page and one person not becoming the default parent who deals with everything. I was very resentful that I took on all the school, social care and paperwork aspects as well as plenty of day to day care. I agree that time off is very important.

Unfortunately, ime of meeting hundreds of parents of SEN children, I’d say in 99% of cases; it’s the woman who does the day to day child care, takes the child to the appointments and deals with all the paperwork. I can think of one father, who represented the parents at tribunal. If the women I’ve known were lucky, the father went to annual reviews and occasionally meetings.

Some women worked full time and didn’t fight for their children with SEN. A few were deluded and couldn’t countenance specialist provision.

[cansu]

I agree that it is commonly the mother who deals with all this stuff. It continues when the child is an adult. I am still stuck with doing with my adult ds finances and carers.

[cansu]

I also work full time so it is nothing to do with that.

[Lesley25]

@Quisquam @OvertakenByLego
if you have a social worker and direct payments , would I still need continuing healthcare funding as my sons needs are (so far), being met.

[Quisquam]

I never had direct payments. I asked SS to organise it all, I didn’t have time to do their work for them!

The big advantage of NHS CHC funding is the NHS is free at the point of use, where social care is not. Say DS needs to go live in a care home - the NHS must pay the fees and all other costs related to health, like incontinence pants, etc. DS gets to keep all his benefits - UC, Pip, etc. If he gets Pip mobility, he gets to keep that anyway, so he could have a Motability car, if he wants. DD gets about £200 per week, plus DLA care every day, she is in our care (approximately £11 a day).

If he is funded instead by SS, they will take all his benefits off him, except for about £26 per week personal allowance. It’s not enough to buy clothes, toiletries, a new TV and whatever else he wants to do, like going out?

So, it’s £200 v £26 per week for DS for the foreseeable future?

[Quisquam]

PS - DD is still on ESA and DLA care and mobility, not UC nor Pip!