If society is willing to fund childcare for working parents - should parents of disabled children be equally entitled to this?

[MamaLlama123]

As a society we spend millions on funding childcare for working parents - policy is framed as this “free childcare for working parents”. One of the main arguments for access to this free childcare is because women shouldn’t have to give up careers/ pensions/ financial independence when they become mothers

However families of disabled/ send children often find that these hours are unusable in practice because settings can’t meet needs/ reduced timetables or simply will not offer places. Is seems unfair that mothers are expected to step down from work/ reduce hours/ absorb all caring responsibility. nurseries/ schools will often say that the requires requires a 1:1 to access the setting which no one seems prepared to fund

The parents with the highest caring responsibilities often greater financial pressure have least access to childcare and the workforce. Any if lack of childcare pushes these women/ families out of the workforce - then shouldn’t the benefits system compensate for this, for the earning and pension losses that result. An example of this that the money spent on 30hrs free childcare place to be directly given the the family

Or should these mothers/ families just accept that they should be at home? If a mother of a disabled does wish to maintain her career/ work - is this a legitimate goal that society should support or is that selfish because her child’s needs are greater.

I would be interested to hear thoughts as well as hear from families in a similar position

The family is entitled to uncapped benefits though. If the mother isn't working the father should compensate her for loss of pension, as happens in divorce. Lifelong subsidies for the parents is not fair on working people, who may not have any kids at all. Who's compensating them for being unable to claim child benefit?
Taxpayers can't be expected to compensate people for everything.

I agree with this.

I think we need to get away from the mindset that it's the rest of society's or the government's responsibility to completely even out every disadvantage.

Firstly, and most obviously, because it's completely unrealistic. As PP have outlined, throwing money at the problem doesn't resolve the issue when the required provision isn't available. Sadly there just aren't many people that want to do caring roles in our society and even in an ideal world where we could fund loads of new roles to care for disabled children, adults and the elderly, they would have to be relatively low paid and there simply aren't enough people that are capable and willing to do the work. I am often struck by the fact that children's own parents don't want to be FT carers for their own children and would rather pursue their own career ambitions for various reasons. I don't say that to be harsh, I completely understand why and I too would feel the same way, but it is very naive to assume that there will ever be a large pool of people queuing up to do the work you don't want to do. Caring is hard and relentless.

Secondly, we simply can't afford to fund all of the caring work that we need as a society. People have to start getting their heads around the fact that ultimately the welfare state is built on the idea that a large proportion of us care for our loved ones and this will involve some kind of financial sacrifice. If every family carer walked away from their role or demanded to be adequately financially compensated then there is absolutely no way that the system could function and ultimately it would lead to our vulnerable not have their needs met and in some cases dying. You aren't doing the state a favour by looking after your own. You are doing your natural duty. It's the only way the vulnerable en masse can survive and have any quality of life.

carers allowance isn’t really compensation for her lost earnings though - it’s £83.80 per week, roughly £4000 per year. A parent who leaves work to care for a disabled child may be giving up £20,000 ++ per year and also pension contributions/ career progression. The question isn’t whether taxpayers should pay for everything but whether one parent, often the mother should absorb these costs

And if the partner is covering a full family’s cost solely (compared to other families earning 2 full incomes) - its unlikely that he’ll be in a position to afford his own/ the other parents pension.

Who absorbs the cost in the family, isn't for taxpayers to fix. It is a family decision.
The mum could work when the dad is off, like many families do when childcare costs aren't affordable or available eg for shift work or low paid work.
There will be benefits paid for the child eg DLA which will be enough for the family to live on in addition to other benefits. The income won't be much less than 2 working parents on average wages paying childcare.

This is one of many reasons the birth rate will continue to decrease. The risk does not seem worth it and let’s be real it is mainly women who absorb it and fathers are more likely to leave when a child has a disability.

I think there’s a fundamental lack of understanding the demands made on parents caring for disabled children.

I have always worked, my DD has complex needs which present in a range of ways which can be very unpredictable. She can be managing well one day and unable to function the next. At one point I was managing 7 different health specialisms, meetings with school and other professionals all during working hours. She couldn’t tolerate care providers, from group settings, child minders and more specialist supports.

Her sleep pattern is erratic at best, and she couldn’t be left unsupervised while awake, so I lived on 3/4 hours sleep for years.

What worked for me was being well established in my career to where I had a very strong salary, so could work part time and still make enough for that to cover my living costs. I needed a very flexible employer, and a job that could accommodate that flexibility, which meant changing jobs and moving out of a front line role. I also have a very engaged husband who pulls his weight.

It’s not just as simple as she can work when he’s at home. Everything that needs to happen to run a household still needs to happen, in the midst of attending to your child. I have another child who also needs his parents engagement. The amount of admin needed to navigate education, health and other services is breathtaking and needs time and attention.

My DDs DLA in no way compensates for my loss of earnings over time. I halved my salary going part time, the £400ish in DLA doesn’t touch the sides and is actually used for supports my DD needs, not to plug a gap in household finances.

It’s not just about money, it’s about having workplaces that can offer flexibility, having reliable education settings, a coordinated approach to health services, less red tape to cut through. The structural landscape works against support for carers at every level, and it’s bloody exhausting.

No, people mostly don’t know they’ll have an autistic child.

Mostly parents of autistic children do not have diagnoses of autism themselves. Occasionally they get one after their child has been diagnosed.

I think you’re either forgetting or are unaware of how much autism diagnosis has changed over the past few decades. Until relatively recently only severely affected individuals were diagnosed. Even now, it’s less recognised than it should be in women and girls.

Also, as a pp said, often siblings are born before autism is recognised in a child. We first began to suspect DS had issues at age 4 or 5, and he was diagnosed aged 8. He had two siblings before we suspected anything. We didn’t know anything about autism then.

I have two disabled DS who are luckily both settled at a special school. My DH and I both work around each other and the school run and at times it is a bloody nightmare. We are lucky that I work term time only and he is self-employed so can manage his own time. My headteacher is understanding and I am able to take carers leave to attend medical appointments which fortunately are not many.

I think what some people don’t realise is that there is very little structural support out there - eg no before or after school clubs which many parents can access, no holiday clubs, no family support as our families struggle to manage them.

The provision to which the funded hours apply is private provision. Many private provision settings can only function by having some 'full paid' hours and by running at full ratios.

It's very unlikely that a chain of disability-focussed nurseries would be set up privately with 1 2 1 care required for many/all attendees, because of the economics of it. I think these would need to be state-established (or part of a wider state established nursery provision that mirrored school provision) for it to happen.

I think carer’s allowance is a pittance and should be increased. As shown by Scope's disability price tag research, for many, DLA does not cover the cost of being a disabled household. SEN provision also needs improving. However, I don’t think the comparison to the 30 free hours is helpful. Not least because it is hardly any money really and comparing funding parents instead gives LAs and settings a get out of jail free card rather than providing provision for disabled DC.

Some LAs have early years assessment places for (some) DC with SEN. Expanding this provision would help. I doubt that is going to happen, though.

It isn’t immediate and often takes parents forcing the issue, but if school/nursery is inappropriate, there is EOTAS/EOTIS via an EHCP. Not for nursery DC, but for CSA DC in school, there is also section 19 provision in the meantime if DC is unable to attend full-time.

If your child’s school is constantly calling to send DC home, are they formal suspensions or informal, unlawful exclusions?

On their website, Contact has a model letter you can send to your LA about lack of childcare. They have a duty to ensure there is sufficient childcare in their area.

Well it’s not the taxpayer who should absorb the cost is it? Or do you think that’s who/what should absorb it? It’s up to individual families how they cover costs. We decided to have DCs, it’s a choice. That comes with the possibility of having DCs with disabilities. I didn’t have children thinking that the state will pick up the costs of everything.

Absolutely

I mean in theory they should/already do. If a parent/carer wants to work/volunteer/study this should be facilitated by social care and if a regular childcare setting isn't appropriate they should fund a specialist one, or fund appropriate care at home. The reality however is that they don't. I suspect a lot of parents don't realise they have this right either so probably never fight for it. I also suspect it would take a pre action letter to get most (if not all councils) to cough up this support.

So you use private schools and health care too then?

You think parents of disabled children should use their respite time to work? That's like expecting you to work all through your holidays.

A huge amount of families can't even get respite care.

From the Contact website:

A carer’s assessment focuses on you as a parent and your needs. Social services should discuss issues like the help you need, and whether there is anyone else who helps or if you are your child’s only carer. The carer’s assessment should also consider your wellbeing, including health and safety issues, and important commitments like relationships and employment.

W H AT T HE L AW SAYS:
Parents of disabled children (called parent carers in the legislation), young people and young carers have strengthened rights to an assessment of their needs under the Children and Families Act 2014. The Children and Families Act amended the Children Act 1989 (sections17ZD, 17ZE12 and 17ZF). Under it, local authorities must assess parent carers if:

‘it appears to the authority that the parent carer may
have needs for support’, or they

‘receive a request from the parent carer to assess the
parent carer’s needs for support.’

These assessments are called parent carer’s needs assessments. The Act also says that:

A parent carer’s needs assessment must include an assessment of whether it is appropriate for the parent carer to provide, or continue to provide, care for the disabled child, in the light of the parent carer’s needs for support, other needs and wishes. (Children Act 1989
section17ZD (9))

They must also take into account:
‘the well-being of the parent carer’, and

‘the need to safeguard and promote the welfare of the disabled child cared for and any other child for whom the parent carer has parental responsibility.’ (Children Act 1989 section17ZD (10)

This ‘wellbeing’ duty is an important addition. It means local authorities must consider a person’s:
personal dignity and respect
physical and mental health and emotional wellbeing
protection from abuse and neglect
control by the individual over day-to-day life
participation in work, education, training or recreation
social and economic wellbeing
domestic, family, and personal relationships
suitability of living accommodation
contribution to society.

https://contact.org.uk/wp-content/uploads/2021/03/Carers-assessments-1.pdf

You should also read this one. It's eye opening when you've been denied support over and over https://contact.org.uk/wp-content/uploads/2021/03/Services-and-support-from-your-local-authority.pdf

I’m not sure anyone really has a right to anything practically speaking. We lose or gain depending on when and where we are born. On the whole being born in the UK now is a gain so anything else is a bonus.
There wernt really the nurseries around like there are now when I had my disabled kid 34 years ago. I was desperate to go back to work, as much for the break as the money, but there were only 25 registered childminders in my borough and none of them willing to take on a disabled child.

It was what it was. I did weekend work, I knew others who worked night shifts. This of course is only possible if you have a partner or someone to sit with the kid. Luckily my kid started a half morning at nursery at 2.5 years (Pre School Learning Alliance). It was very affordable (we were v broke) and was a sanity saver. They didnt force him to engage so he pretty much sat in the corner looking at picture books, but he came to no harm and learnt to tolerate other kids at a distance.

I would go home, do housework then sleep. Once he started special school at 5 I got part time shop work then went full time by the time he was 15 (it took that long for him to learn independent travel), I studied with the OU during these years and did a lot of voluntary work. I also joined the single parent statistics when he was 8. So life became easier and despite less money coming in we were far better off as it wasn’t being spent on rubbish.

I don’t think I could have worked full time at any point before he was 15 simply due to the lack of appropriate childcare. Special schools don’t have wraparound breakfast clubs, afterschool and so on. I honestly don’t know how people do it and am frankly in awe of their abilities to juggle it all. I couldn’t have done it and would probably have had a nervous breakdown (well I did but that was during the statement in process!)
I think I was extremely lucky to be a parent during the New Labour govt from 1997.

Yes.
And all (recommended) care needs should be provided, and travel to medical appointments (genuine, regular ones that can be proved) funded.

DLA covering loss of earnings / being enough to live on is some absolute nonsense I didn’t expect to see today.

We have a profoundly disabled 9 year old and both work full time, around each other and the various things he needs. It’s exhausting, barely possible, but the right financial decision for us as a family. Others aren’t so fortunate.

I absolutely believe that every child has the right to equal access to education, EYFS and above.

If we’re going down the avenue of saying that SENd parents (mums) are at home so shouldn’t have access to childcare, I hope the same applies to SAHP with non-disabled children.

Saying that SENd parents can just pop their child in imaginary respite instead is equally as ridiculous. That provision for many families, does not exist.

But in this scenario the tax payer is absorbing the costs for non disabled children.

You may feel its fair that if the cost exceeds a certain amount it transfer from a state risk to a family risk but others may think the reverse that it should be a family risk until it hits a certain level and then the state helps.

100% and honestly I am the first person to shout cut benefits.

The difference is that the decision to have children should be informed by the provision that is available in various scenarios. So say for example you live in a area with poor schools then realistically this is the education provision that will be available for the children you choose to have unless you move. The same goes with healthcare, we all have some entitlement to healthcare through the NHS but everyone knows that the NHS won't treat every condition and sometimes the quality of care will be poor. We live in the real world. Not some utopia where we have the resources and funding to provide everything to every child or adult.

Having a disabled child will mean that the standard provision available to everyone may not be suitable. The state may then offer different provision in some cases but you start to get into an area where there is very finite funding for almost unlimited needs. The reality is that if every carer fought for what you are suggesting then the provision would be reduced out of economic necessity and due to resource constraints.

Meanwhile in the real world we have cancer patients being declined treatment on cost grounds. We have hundreds of people dying each week due to not being able to access timely and effective A&E care. Tens of thousands of old people die each year waiting for social care.

Nobody is getting all their needs met. We don't have the money or the resource. The idea that parents can be completely financially cushioned from the impact of having a disabled child is just pie in the sky thinking.

Well yes, but we should be aiming to better all of those things too. Right?

I an ideal world absolutely. In reality I do not think there is enough money to pay for this. My eldest has ASD- he is high functioning and high achieving, however, I wasn't able to return to work after my maternity leave due to separation anxiety and general anxiety. For years I had to work weekends and evenings. Then when I did return we had to pay for an after school nanny.