Benefits question. One parent full time carer, can other parent work part time?

[MysticMushroom]

I've posted here for traffic as I could really do with some advice from people who understand how this works.

I'm also prepared to get flamed/benefits bashed but at this point I am so desperate that I don't even care.

To give some background: I am a registered carer for my 7year old DS. He is diagnosed autistic and ADHD. Receives high rate DLA and low rate mobility.

Due to the nature of his needs and the utter failure of our education system, DS has never attended school properly. Pre-schools couldn't cope/meet needs so put him on severely reduced hours where he had very little interaction with other children.

At age 4 when due to start school I asked the LA if he could attend specialist as I didn't think he would cope in mainstream. They didn't listen and he lasted 4 weeks in mainstream before they reduced his hours to 2 hours a day for 3 days a week where he was kept in a cupboard away from the other pupils so had very limited social interaction.

This went on for 2 years while we fought to get him a specialist school place via tribunal.

(Very long story that I have posted about before under a different name) but the tribunal named a specialist school that we were led to believe would be suitable for DS but turned out to be completely unsuitable and unable to meet his needs, therefore leaving DS with no school at all as he can't attend this specialist school and can't go back to mainstream due to the tribunal now stating on his EHCP that he needs specialist provision.

Despite numerous phone calls and meetings with the LA and an urgent review of his EHCP taking place, we are still no closer to getting him into a school as the LA are frankly useless and don't respond. He's been left with nothing with the view of finding something next September.

Last February I found out I was unexpectedly pregnant. Decided to go ahead with the pregnancy as at the time the situation was more stable. DS was attending his mainstream school for 2 hours, had just been given a really good 1:1 there who was wonderful with him and also had support workers for the 3 days he attended school to give respite for a few more hours away from home.
The situation obviously wasn't perfect but wasn't as dire as it is now so chose to go ahead with the pregnancy.

However over the course of the pregnancy everything with DS's schooling fell apart leaving us where we are now, with DS at home full time. The massive changes that have happened over this last year have impacted him greatly and his behaviour is the worst its ever been. Incredibly challenging and we are doing it with 0 support as have no family to help us and all services have been exhausted.

This is where my question comes in:

We claim UC. My partner works full time, long hours. Is also away EOW as he has sees his children from a previous relationship.
I am registered as a full time carer for DS therefore do not have to seek other employment until 2029 (although I did have a part time job up until my pregnancy). Is it possible for my partner to be considered the 'main carer' of our baby and therefore only be required to work part time while I continue being the registered carer of DS?

As if this was possible then it would take so much pressure of a situation that is not working right now. It is next to impossible to meet DS's needs without any respite or support and be able to look after a 4 week old baby. Partner works long hours so out of the house most of the time.

The situation has become so impossible that I am feeling really depressed and have no hope. Might be clutching at straws with this but if DP could be home for more hours it might actually be survivable but unsure whether we can claim UC if he is in part time work only.

Looking for advice from people who know about this. Sorry the post is so long. Its such a long story and I tried my best to shorten it down.

I think you need some professional advice, but presumably your DH pays maintenance towards his other children... how would reducing his hours impact on that?

You need to find an alternative solution imo.

Yes he does pay maintenance. He wouldn't stop paying his maintenance if he reduced his hours. We would just have to find other ways to cut costs etc. Its more about having that extra pair of hands for more time during the week as its just not working now.

I have tried to think of all other solutions but aside from putting DS into care (which I absolutely don't want to do) there seems to be no other solution. We have tried everything. Every service going has let us down and said they can't cope with DS as he needs 2:1 support and there is just not the funding for that.

I am sorry I don't know about the benefits situation, perhaps Citizens Advice can help?
In terms of your DS have you thought about an EOTIS (education other than at school) package through the LA? There are some brilliant support groups online.

why would you need to look for work in 2029? Presumably you get carers allowance and are therefore exempt from having to look for work.

No idea on the benefits side. Both of my DC are disabled. DH works full and I part time. I would give anything to just be able to claim carers allowance but completely unaffordable. I couldn't imagine you would have enough money coming in for a decent quality of live with one part time job for 4 people. And how would he carry on paying maintenance on a part time wage.

I think you need some expert advice. I dont know if two people can be carers for the same child as benefit entitlement. However, I dont think it's wise for your DH to give up his full time job. There is no point in adding financial worries to an already difficult situation. Perhaps your midwife could refer you to an organisation that would help.

Don't know about your main question OP but you need to take the lead with finding your son a school, the LA don't care, you basically have to do their job for them. If you're entitled to legal aid you can get help with any appeal (including independent assessments) which may benefit you hugely to get the evidence you need so 2:1 care is funded. Look on the Ipsea website it's a great resource. I know how draining it all is.

Your partner could work part time and uc would top this up accordingly or, I would get a report from the doctor for your sons needs and submit that if your husband was to give up work and look after the baby.

Pop to citizen's advice or give them a call, best of luck OP your situation sounds increasingly difficult I feel for you I really do

Very rarely there is discretion for a second carer of a disabled child to have reduced or no work related conditions, but you wouldn’t get a second carer element. Only one person in a couple can be considered the nominated registered carer of dependent children. The other parent can still be considered as a carer for a disabled person.

The LA has a duty to ensure DS receives a suitable, full-time education and anything detailed specified and quantified in F. If this isn’t happening email the Director of Children’s Services requesting provision under s19 of the Education Act 1996 and reminding them of their duty under s42 CAFA 2014. If they refuse, delay or ignore email again threatening judicial review. Then, if that fails, contact SOSSEN for help with a pre-action letter.

Have you appealed the EHCP following the early review?

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

In 2029 my son will be reassessed for DLA so potentially I may have to look for work then if he no longer gets medium or high rate, although unlikely he wouldn't as his needs are severe.

DS already has an EOTIS package funded by the LA but when I say they are useless I mean it. All the providers they have contacted to provide support workers for DS have failed. They've turned up for one session and said basically 'nope, can't do this, he is top high needs'. One woman turned up and took one look at him and left straight away! Absolutely heartbreaking for DS.

As for the poster who told me to take the lead on finding a school for my son... I have done. I've researched independent specialist schools, contacted them, visited, found the ones I think could be suitable, placed them before the LA (it has to go through then, I can't do it myself because they control the funding) and they have said "No. We don't think that'll be suitable. We'll send his EHCP to this school"... and sent it to a school that I didn't want or think would be appropriate. The schools deadline to respond was last month and they haven't responded and no amount of chasing the LA to get this response will make them do anything. So can't even move forward until they get their act together.

Meanwhile DS is having meltdowns daily, he is becoming increasingly defiant. He has PDA profile which makes things even harder to manage. I am functioning on 1 or 2 hours broken sleep a night. Trying to look after a baby and provide full time care to DS.

Would give anything just to have a few hours respite a day but it's all been taken away with no hope of it coming back as there just isn't anything out there.

You need to push the LA to provide a suitable, full time education and the provision in F. They can do so, they need to fund more specialist staff, but they won’t do so unless you force them to.

When was the early review? The LA has deadlines they must adhere to and can be enforced.

The early review was mid September. I have tried pushing the LA time and time again. I've made a formal complaint about their lack of response and blatant ignoring of our situation for it to be investigated and the solution to be placing a job ad for more staff. I've written to my MP detailing the whole situation for him to write to the LA and receive a response from them telling him they are in contact with me when they are not! But that was enough for him to drop us.

I don't know what else I can do! I am on the phone in the queue for up to an hour every single day trying to be able to speak to them to be told "I can't help you with this, so and so will call you back" and she never does. Or will send an email at 6pm before she leaves work and then not respond to my replies.

No one will help us and I feel like I am drowning.

I don’t know about benefits I’m afraid but I just wanted to say that your situation sounds so tough. Much less difficult than for you I’m sure but I remember the impossibility of caring for two young children with very different needs. There were times when there was always someone in the house crying. You’ve probably thought of this already but is there any voluntary practical support you could get eg to hold the baby while you do things with DS eg from home start or a church or other community group? Or are there any teenage/student family members who could come and stay in the holidays to be an extra pair of hands for a few days. if you have any space? This really helped me but I know it would only be a drop in the ocean.

Also wanted to say that while every child is different my friend was in a very similar situation to you, first child diagnosed autistic very young, high needs, smearing, impossible to safely leave the house with both DC , partner working full time, no family support. I think she got funded specialist childminder, then special school. He’s now an adult with friends and a part time job. I know this isn’t always the outcome but I just wanted to say things can get much better than might be imagined. I really hope you get a suitable school for him.

PS my friend also similarly had no respite because they said they couldn’t cope and he needed 2:1 .

If the LA is refusing to provide a suitable full-time education and the provision in F have you contact SOSSEN for help with a pre-action letter both for failing to provide provision under s19 of the Education Act 1996 and also failure to deliver provision detailed, specified and quantified in F of the EHCP under s42 CAFA 2014?

The LA must inform you whether they are going to amend or not within 4 weeks of the review and if they are going to amend issue the amendment notice at the same time. Have they done this? If they are going to amend they must then finalise within a further 8 weeks. Have they done this? If the LA have not complied with the timescales you can enforce them, via JR if necessary.

I'm not an expert but as a full time carer for my DS, I completely sympathize.

Yes it is possible but as others have said will you be able to cope on such a reduced income as UC will in no way make up for his loss of earnings. Also if he pays maintenance for his other kids I'm unsure if that amount would drop. How many other kids does he have?

I'm so sorry you're going through this OP, you've been so let down. I wonder whether homestart could advise about support and benefits. I can't work out how to post the link on here but Google Homestart in your area. As pp suggested your midwife may be able to advise.

@Squirrelsonthescaffolding Thank you for sharing this. It gives me a little bit of hope that things might not be so horrible forever. It's hard to stay positive at the moment though.

@KeepGoingThomas Thank you for this information. I'll have to have a look at all the exact dates in the time line when or if I get a minute. I think I remember the outcome of the urgent EHCP review being they agreed to amend the EHCP and have sent out his EHCP to a specialist school who have not yet replied. They also set up an EOTIS package but nothing has come of it as there are no suitable provisions who can work with my son.. or so they say.

To answer your question, yes, one parent can be the "carer" and the other parent can be the "main parent" on the system.
Your DH wouldn't need to work until your new baby is 3.

You can change it on your universal credit page under changes to circumstances.

Good luck!

The LA is fobbing you off. They will only comply with their legal duties if you force them to.

If the review was mid September and the LA is going to amend they should have finalised now.

@KeepGoingThomas I know they are but I don't know what I can actually do about it as wherever I turn and try to complain/force things to happen I just get fobbed off even more. Like making a formal complaint or writing to the MP. I don't have the money for any kind of legal stuff to do on my own. I dont even have the legal knowledge. Its just an impossible situation and is now even more difficult trying to battle all this and do all these people's jobs for them while also caring for a 4 week old baby.

What are your reasons for for refusing to consider the school the LA suggested?

I agree with this. You need to push them.
You need to do more research. It might mean that you need to move out of area to one with better SEN services although pretty much everywhere is dire.

How did the tribunal name an unsuitable school? Did you not request a school?

It sounds really difficult but you do need to do more because no one else will and you’re his only advocate.

Have you contacted IPSEA? Or your local charity that provides advice on SEN?

Follow the advice in my pp about threatening JR. Sometimes the threat is enough, but if it doesn’t work you need a pre-action letter. Check if you are eligible for legal aid for a pre-action letter - this will be done on your finances, but if you get to JR proceedings themselves it is in DS’s name and he can be eligible in his own right. If you aren’t eligible for legal aid, SOSSEN is reasonably priced - far cheaper than DH giving up his job.

I wouldn’t move LAs. If you move LAs the new LA will review the EHCP and can amend, reassess or even cease to maintain. Obviously you would be able to appeal, but it would be added stress.