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is it normal to have never had any respite care

(23 Posts)
c0ffeemachine Sun 06-Jan-19 21:17:26

if you have an 11 year old with severe LDs and autism.

I work (school hours only) - so school is no break for me. No family, no support network. I am really at breaking point again.

I tried a few times in the past to get respite and got nowhere (was told I could leave work if things are too much but I cannot afford it financially). I never got a carers assessment (always was fobbed of - my understanding is that you are legally not entitled anyways if the person you care for is under 18).

respite is on my 2019 to do list again and I wonder if it is worth the fight if it gets me nowhere.

Is there a legal entitlement for respite care for parent carers? is it unusual to no get any support if you care for an 11 year old with very complex needs? or is this pretty standard these days.

Just trying to weight up of this whole respite battle is worth it or if it will just drag me down more.

Lesley25 Mon 07-Jan-19 08:25:16

I did this last year too.
Contact your social services and they will come out and detail all your child’s needs in a child in need report. This then gives you hours of respite which come in the form of direct payments- they’ll explain how all this works.
I didn’t know this was an option till last year and the process took about 4 months. I then had to find my own carers but that’s because my child tried a holiday club for additional needs but this was even too much. The lack of familiarity mainly. I finally put an advert in his school and had 2 carers apply which both needed DBS checks - social services takes care of that. But again that adds weeks to the process. We started in March 2018 and finally my carers started October. It’s been a godsend and the only way I believe we are able to hold off a residential placement.

c0ffeemachine Mon 07-Jan-19 08:32:53

Contact your social services and they will come out and detail all your child’s needs in a child in need report. This then gives you hours of respite which come in the form of direct payments- they’ll explain how all this works.

I did. They told me as I am working I am not considered in need of respite. If I need a break I could give up work. So no assessment, no respite. When I quoted the law (that I am entitled to an assessment) they told me this only applies to carers of adults, not parent carers.

I basically don't know how to enforce an assessment in the first place.

Lesley25 Mon 07-Jan-19 10:09:45

Apologies, I don’t work so I’m not sure how this works now but I do know of parents who do work and they do receive direct payments. They were referred to social services through their pediatrician

Claw001 Mon 07-Jan-19 10:48:32

Did you contact the children with disabilities dept?

You are legally entitled to a carers assessment and your child is entitled to a needs assessment. The cater has to be over 18, not the child!

www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-assessments/

Might be helpful

vickibee Mon 07-Jan-19 10:52:53

We have just been awarded 5 hours pe week in direct payments, similar situation to yours. A sw came out and assessed the needs of the family as a whole. Not sure how we go about finding a suitable respite career.

Everything takes so long ... our hours were finalised in November and still waiting for the exact details.

zzzzz Mon 07-Jan-19 11:46:13

We’ve never had any but I know people who do who have children and work. I think it’s supposed to be part of the local offer????

I honestly find all this stuff SO hard to find out about. I asked MNHQ if they would consider helping us all with some clear guidance for careers and they were thinking about it. Perhaps if a few more people asked they might see just how useful it would be? I just reported a thread and explained what would be helpful to know.

drspouse Mon 07-Jan-19 11:51:27

We use DS' DLA to pay for an occasional carer. Could you do that?

drspouse Mon 07-Jan-19 11:52:39

Vicki I asked on local FB groups for parent carers.

HugAndRoll Mon 07-Jan-19 11:59:34

I've never had any and I'm a single mum with two disabled children. I've just had an assessment and because they go to their dad's every-other weekend, that's classed as my respite.

I know I'm lucky that they go there, and I completely appreciate where they're coming from. However, what I was asking for was help with taking them out. I can't really take them anywhere by myself due to my children's anxiety and enhanced fight/flight/freeze response, so we often just don't go anywhere. I'm moving in with my partner in about six months, so things will definitely improve then, but as it stands I can't get physical help.

The only reason it frustrates me is that if I hadn't split up from their dad, despite the fact we could theoretically take it in turns to go and do something as respite, or take the boys out individually and/or as a family, we would be entitled to respite to have a break.

I shouldn't really moan because I'm a lot more fortunate than a lot of people, but to summarise, no it's not unusual to not have respite and/or to keep asking for a carer's assessment and to not get one.

c0ffeemachine Mon 07-Jan-19 12:50:48

claw, yes, you can ASK for an assessment if you care for a disabled child. but from what I understand, there is no legal obligation to carry out an assessment if the person you care for is a child. That's the impression social services gave me confused

No, DLA is used to cover the mortgage and bills - I had half my working hours as there is no wrap around childcare available and this has been a massive financial hit for us. I couldn't possibly use DLA for respite.

Thanks all - will try again. maybe it's a case of being a pain in the backside.

Claw001 Mon 07-Jan-19 12:54:47

There is relevant Law.

www.disabilityrightsuk.org/assessment-process-carers-under-care-act

Lovemusic33 Mon 07-Jan-19 13:10:27

I am having a carers acessement tomorrow, my dd is almost 13 and it’s taken me ages to get this far sad ,I’m not sure if I will be offered any help. I am a single parent to 2 dc’s with ASD (dd2 being more severe). I work part time and struggle as I can’t get child care during holidays, at the moment the dc’s DLA pays for us to live (and a few extras for the dd’s which they need), I don’t get carers allowance becuse I earn £10 over the £130 limit to claim sad.

Claw001 Mon 07-Jan-19 13:17:33

Parent carers of disabled children

A parent carer is someone over 18 who provides care to a disabled child for whom they have parental responsibility.

The Children and Families Act 2014 amends the Children Act 1989 requiring local councils to assess parent carers on the appearance of need or where an assessment is requested by the parent. This is called a parent carers needs assessment. This assessment can be combined with one for the disabled child, and could be carried out by the same person at the same time.

The local council must also be satisfied that the child and their family come within the scope of the Children's Act, ie that the child is a child in need (see below).

The local council must then assess:

whether a parent carer has needs for support and what those needs are
whether it is appropriate for the parent to provide, or continue to provide, care for the disabled child, in the light of the parent's needs for support, other needs and wishes
Parent carers' needs assessment must also consider:

the wellbeing of the parent carer
the need to safeguard and promote the welfare of the child cared for, and any other child for whom the parent carer has parental responsibility
Wellbeing has the same meaning as applies to adult carers of adults, and you can read more about this in our assessments factsheet.

From here

www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/young-carers-and-carers-of-children-under-18

c0ffeemachine Mon 07-Jan-19 13:26:23

Thank you Claw!!!

c0ffeemachine Mon 07-Jan-19 13:30:14

lovemusic
if you earn only a bit over the CA threshold,there is an easy way around. join a pension scheme if you haven't done do or increase your pension contributions. For CA calculations, 50% of any pension contribution is deducted to calculate your CA entitlement. win win for you: you pay more into the pension pot and you qualify for CA.

Claw001 Mon 07-Jan-19 13:36:38

Make sure to request it in writing! And from the children with disabilities team.

If they refuse ask for their reasons in writing and a copy of their eligibility criteria.

I have found SS to be quite ineffective at times! Particularly the teams with no experience of disabilities! Good luck x

Claw001 Mon 07-Jan-19 13:39:17

contact.org.uk/media/925803/carers_assessments.pdf

Here there is a template letter for requesting

c0ffeemachine Mon 07-Jan-19 14:43:09

Thanks a lot!

zzzzz Mon 07-Jan-19 15:05:22

By the power of Mumsnet! I love reading threads like this.

Yellowbutterfly1 Mon 07-Jan-19 19:15:11

When my daughter was 14 we were given respite. She was the only one in her special school class that had not had respite from a young age.
We were very lucky and were given 1 night a week in a local respite center for children with disabilities and 1 weekend (4 nights) every 6 weeks.
We were given the respite mainly due to the effect everything was having on my younger child who young carers were concerned about and my disabled daughters lack of sleep.
Funding cuts now mean that local disabled children receive 1 night respite every 2 weeks and no weekends.
I was only given a carers assessment when my daughter turned 18.

eggsandwich Mon 07-Jan-19 21:50:25

You need to get in touch with social services and be assessed for respite, my ds has autism and severe learning difficulties and we get 28 nights my ds is 18 so is now under adult social services, but he has been going for respite since he was 10 as we were literally on our knees and it got to the point where we said if we don't get any respite your have to put him in care, they certainly listened and that same day did an assessment and we were given respite an absolute life saver.

April2020mom Tue 15-Jan-19 23:02:31

I literally had to demand some support from them. I emailed asking for a assessment of his needs. Primarily I wanted support for a few hours a week. We applied for respite care for our son so that I can get a healthy amount of sleep. I have trained the person to help him with his independence and confidence. I’ve struggled with social services at times too. It’s hit and miss.

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