Careering off-track or stalling on re-entry: the hidden brain drain of parent carers from the workforce

How can parent carers of disabled children keep their careers?

Since Motherland exploded onto our TV screens last month, the conversation about working parenthood has shifted up a gear. Whether you relate to the character parodies or find them slightly absurd, there isn’t a mother I’ve spoken to who hasn’t recognised a bit of their own lives in the narrative.

As a female growing up in the 80s and 90s, I was always supported to believe that I would have a career. That I could be independent and successful in my chosen path. And, for the most part, I have been. Probably a bit of a ‘Julia’, with a slightly non-descript creative consultancy career and a comfortable home life but with far greater marital equity and less rage than the Motherland character enjoys. (I mean, just where is her husband FGS any why hasn’t she left him yet is all I could think as I binge watched on iPlayer…)

What I hadn’t accounted for though was just how hard it would be, nor how increasingly necessary it would become, to maintain my career once our second child was born with disabilities.

With my first, it was easy. At 8 months, she went off to childcare and we both went to work. A small independent nursery followed by a nanny-share, then a regular pre-school, saw her through her early years contentedly. Childcare was easy to come by, if pricey, and I never doubted my ability to return to work.

With a disabled child, there were no childcare options at all.

As well as the absence of childcare, my calendar was overwhelmed with disability related commitments. Orange had no diagnosis so on top of the twice weekly physiotherapy appointments there were diagnostic appointments, medical reviews and assessments to coordinate.

Unable to return to work as planned, we had to sell our home and move in with my mum while we found our feet again.

In the end, it took me almost three years to build up again to full time work. I have only been able to do this because we moved across the country, have family help and both of us have jobs that mean we can work flexibly with just enough frequency to keep all the plates spinning.

But I am one of an extreme minority.

As Sophie Walker, the leader of the Women’s Equality Party and mother to a child with autism says in her piece today for Working Families, we are ‘a small – and very grateful – minority‘ and yet still ‘perpetually worried that it might all fall apart‘.

According to research from Contact A Family, I am one of only 16% of mothers of disabled children who are in paid work, compared to 61% of mothers with typical children.

Women with disabled children, and let’s face it, it is pretty much always women rather than men, are careering out of the workforce at an alarming rate.

Any why?

  • The unavailability of suitable childcare for disabled children.
  • The lack of school wrap around care and school holiday care for disabled children.
  • The chaos of medical, health, social care and other appointments that the NHS and local authorities are failing to co-ordinate effectively for children with multiple and complex needs.
  • Cuts in already too sparse respite care and short breaks for disabled children. And the hilarity of the fact that local authorities will allow families to use these services to ‘have a break’ but we are precluded from using them to enable us to work – to bring in an income, pay the bills and to support our families. So, for many families, the cycle of dependency on the state that they don’t want continues.
  • Unavailability of appropriate schooling – The BBC revealed last week in their #BBCsend focus that more and more parents of disabled children are being forced into home schooling because the appropriate schooling for their child’s needs just doesn’t exist.
  • Inflexible employers who do not acknowledge that both men and women have a role to play in child care, particularly when there is a disabled child in the family.
  • A lack of understanding by employers of carers’ needs and rights in the workplace.
  • No provision for paid carers’ leave.
  • Tiredness. Caring for a disabled child often means broken sleep, heavy lifting and managing behaviour. Without adequate support, this can leave parents with very little else left to give.
  • Ill health. Disability and complex medical needs come with a great deal more time spent in hospital than most.

It’s a complex picture, but certainly the first eight items on the list are surmountable with changes to the law and education, health and social care systems to support us.

It might sound expensive but cost analysis carried out for Working Families by Oliver Wyman showed that even just one small change in employment law – a right to adjustment leave for the parents of disabled children – could result in a potential annual net gain to the economy of up to £500 million.

Working Families wants to hear from parent carers about their experiences of combining work and caring. It will help them to campaign to help more parents to get into or stay in paid work. The more evidence there is, the louder the voice.

If you are a parent carer who works, or who wants to, please fill in their survey by 13 December to have your views included.

 

Why this SEND mum is leaving her job in the NHS

Why this SEND mum is leaving her job in the NHS

This is the first time I have written anything for the blog since April. It was round about the Spring when I knew something definitely wasn’t right.

Since then, I’ve been right down to the bottom of the ocean and back up again. Not the exotic, pretty parts of the seabed, bursting with rainbow corals and shimmering shoals. Where I went, it was dark. Murky. Where you can’t see your hand in front of your face and you don’t know what’s coming up behind you next. But you know it’s a long way back up to the surface, if you can find it.

There was a time when I thought that negotiating the smoke and mirrors of the education and social care systems for Orange would call time on my sanity. This is the brutal truth for more SEND parents than I wished I knew. So far, for me, it hasn’t. But since I’ve had the weather eye of a hawk on that front, sharing the load with family and my band of SEND sisters, I missed the hurricane as it snuck up from the other side.

When Orange arrived, he changed my outlook on life, and work. I wanted to do something that mattered. Which isn’t always easy when you’ve built your career in public relations in the City and Soho. So getting a senior role at a NHS and social care provider finally felt like I could make a difference. A job where my personal values could come to life through my work. A career coach’s dream, right?

For the first year it felt amazing. I was good at this. Using my skills for something real and important. Engaging my brain in a way that became a wonderful distraction from dealing with the 5,674 ways the local authority was trying to make Orange’s home adaptations and school transport into a sticky quagmire.

When the storm clouds started to gather at work, I thought I could bat them away by listening to audiobooks about ‘how to be brilliant’ and blaring Tim Ferriss podcasts that would show me how to tackle any sort of work crisis that might come my way.

I thought that because I’ve had to tackle challenges so far out of the ordinary, like resuscitating my own child, that I could tolerate pretty much anything and come out of it unscathed.

But I couldn’t.

No amount of inspirational podcasts and books about creative brilliance and productivity could relieve me of the uncomfortable fact that being in my job was beginning to compromise my sanity.

A sorry but familiar tale of resource and people-power deficits that I thought I could overcome by just working myself harder. For longer.

A culture driven too often by risk and finger pointing, not opportunity and teamwork that I thought I could overcome by imagining I was wearing a coat of armour at my desk, deflecting arrows as they flew.

The stuff of fantasy. But not the marshmallow kind.

But none of this is news to anyone who has picked up a newspaper or switched on the tv in recent months. It’s health and social care. It’s the UK. There’s not enough money. Not enough people. And what happens then? People have a crap time at work and do a worse job.

But I held on too long. Why? Because it matters to me that I work. That I have a career. That what I do makes a difference. That as a mother of a disabled child I will cling on by my fingernails to the opportunity for financial independence and career development. Because I know others want that too. I have campaigned about the rights of mothers of disabled children to have careers, too hard to just give it up. So walking out the door on an intolerable situation was out of the question.

In the end, my brain and body did it for me. Pushing too hard for too long eventually saw me unable to get out of bed bar a visit to the GP to find out why I felt like I was dying. Why I thought I was having heart attacks in the middle of the night. Why I couldn’t sleep. Why I spent two weeks on leave from work in the summer that I don’t remember a minute of.

It was a wake up call.

Months on and I have resigned from my job, with shiny new (non-public sector) work waiting for me just the other side of Christmas. I have started boxing again. Seen friends I haven’t seen in months. Taken up a new writing hobby as a theatre critic. And opened up this blog again to find a raft of messages from readers I didn’t know were reading but have given me a refreshed sense of why I write.

Because this matters. And I can make change happen here. I don’t need to work inside the system to do it.

 

The hare, the tortoise and the mountain. A true story.

I should have heeded the warnings. Listened to my mind when it was racing at 3am for the hundredth night in a row.  Listened to my body when it creaked with exhaustion getting out of bed at 6am to start another day. Listened to my heart when it beat hard and fast as I rushed from one place to another wondering what I had forgotten this time. Listened to my voice when I snapped at my little girl for taking too long to brush her teeth in the morning.

But I didn’t. Because I didn’t want to hear it. I didn’t want to feel it. And I didn’t want it to be real.

Because as women we are supposed to be able to do everything, right?

I wanted to prove that I could. That against the odds I could still be a high achiever with a fulfilling career, hobbies I enjoy, a comfortable home and a happy family life. I wanted to prove that I could do all that while also caring and advocating for my disabled child and others like him as well as ‘living the dream’ a la Coast Magazine by the sea and holding the fort in one piece while my husband works away.

That I could take in my stride juggling school runs and homework and changing and feeding and administering meds and chasing appointments and test results and worrying and worrying over whether the latest chest infection or seizure would see us hospital bound again, while maintaining a professional and super productive work life in my job that I love.

And keeping house. And remembering to fill in the ticket requests for the school play on time, ballet and PE and swim kits and guitar sent in on the right day and party invitations RSVP’d.

A race against time every morning to get us all up and out the door, clean, dressed and fed. Coffee. To school on time. Traffic. To work. Coffee. Try to be professional and brilliant. Supercharge every minute with mindblowing feats of productivity. Squeeze more out of every day than should be possible.

But now it’s 5pm and it’s nowhere near all done.

Traffic. Traffic. School pick up just in time. Petrol pit stop and spelling practice in the car.

Home.

Children fed. Pyjamas on. Meds given. A quick smile and a cuddle. School bags emptied and filled. Post opened. Outfits ironed. Cats fed. Meals planned and bought online. Bins emptied. Piece of dry toast and some chocolate eaten for dinner. Feel my back twinge while I carry a growing boy up to bed.

“How many more times can I do this?”

Sitting in a dark bedroom every night while my anxious seven year old finds every reason not to let me leave or to go to sleep. She fights it. In the end, she sleeps. I creep out. Quick tidy up. Dishwasher loaded, floor swept, counters wiped, dryer emptied, laundry folded. Letters from the hospital read and filed. Emails to the adaptations manager, the social worker, school, a campaign group or two.

Work emails caught up on. A work project finished off in the quiet that only an evening alone on the sofa can bring.

“How many more times can I do this?”

Tweets tweeted. Sometimes about gin and sunsets. Usually about loos.

Worry about how we will ever go out as a family when we can’t change Orange in the boot of the car anymore and there are fewer bench and hoist toilets in the whole of the UK than there are normal loos in Wembley Stadium alone.

Realise I can’t fix that overnight and instead end up reading an article about terrible care homes in Cornwall and worry about Orange’s future. Wonder if I can live to 120. Realise I can’t and that I definitely won’t if I keep eating dry toast and chocolate for dinner. And worrying.

Worry some more. Blank out the worry by scrolling through Facebook, Twitter, Instagram, mumsnet and repeat. Social media oblivion.

Sleep. Perhaps.

Repeat.

I had come to think that this was normal. I had also come to think that if I couldn’t also fit in shifting three stone with an intensive fitness regime and clean diet, expanding my mind each night with the latest Ted-Ex talks and Booker shortlisters while also trying to write my own, being a solid support and confidante to those around me in their times of need, giving back to the communities in which I am a part both in the flesh and online, and renovating and decorating our tumbledown house into this schedule, that I was a failure.

In a word, lazy.

I had heard and read too many times that all working parents face the same challenges and come to believe that I should just be able to get on with it without complaint and without dropping a ball. Because that’s what I thought the world tells you it’s possible to do and that if you can’t, you are somehow second rate.

That if I felt tired it must be because I am a weak individual and need to toughen up. That if I felt sad it must be because I am entitled and ungrateful. That if I found something hard it must be because I am stupid or lacking in sheer determination and grit that others seem to have.

That if I read enough motivational self-improvement books and stared at feel-good Instagram posts I would find my way to the top of this mountain.

Because anything’s possible, if you strive hard enough, right?

But this week I have realised that I have been trying to sprint up the mountain. And sprinting up a mountain gets you nowhere fast, other than altitude sick.

On Thursday, that’s exactly what happened. A difficult conversation at work that I would otherwise have taken in my stride tipped me completely over the edge.

For the first time in years I actually cried. And then I couldn’t stop. An avalanche on the mountainside that threatened to bury me alive.

The irony of this occurring inside a mental health unit at work did not escape me. But in fact, now I am grateful. Because it shocked me into realising that I need to slow down from that sprint if I am ever to get to the top and enjoy the view.

To remember that the hare did not win the race, the tortoise did. And that this is not a sprint. It’s an ultra-marathon.

I was never any good at long distance running at school. I’d always start too fast and get puffed out past about 400 metres. I have always been the hare, never the tortoise.

All through my life at this point I have given up and started again. Abseiled down the mountain to try a different one instead. Run to a different start line to sprint along another track.

But this time I need to find the right way to keep going. Not just because there is no choice but because I also want to.

I need to have faith that I’m in the right place, with the right people, doing the right things. Because in my heart, I know that’s true.

And so I need to adapt my pace. While I am pretty terrible at long distance running I know I can get there in the end if I slow right down.

Even when there are steep hills to climb.

The times I have tried to run since moving to Cornwall have taught me that. If I try to be the hare I never make it even half way up the hill out of the village. The hills here are steep but the views from the top are breathtaking. I have learnt that the only way to get there to enjoy them is to be more tortoise. To jog or even to walk before I sprint.

And from time to time I know I have to seek a little rest and sometimes shelter along the way. To take refuge from the wind and rain or simply to take a breath and enjoy the surroundings.

So as a new week starts I will try to slow down in the knowledge that this will help me get to the top of the mountain, not hinder me.

Because if I don’t, I will fall off a cliff. Thursday showed me that the edges really aren’t all that far away.

Thank you to my husband, my boss, my team and my friends Lucy, Ali, Effie and Alex for listening and showing me it’s ok to say you’re not ok, that talking about it is a good thing, and  that trying to be superhuman is stoopid. 

 

 

 

 

And this is why we do

It’s been a busy week. A very busy week. Which is why it’s taken me until Friday to sit down and write about some awesome news we received on Monday.

You might remember that last year I went to Westminster along with Stacie Lewis of Mama Lewis fame, Hannah Postgate from Rosy & Bo and Mr Boo’s mum from Premmeditations to assist with the all-party Parliamentary Inquiry into childcare for disabled children. We gave evidence to testify for our experiences of trying, and failing, to find appropriate and adequate childcare for our children, who all have different disabilities and care needs.

We made suggestions for what some of the solutions might be to help enable parent carers (and particularly mothers) to be able to work. For many of us being able to work isn’t simply a ‘lifestyle choice’ (as some of us have been told by the local authorities who are supposed to support us), but it is a financial imperative.

As it is for most families.

Our needs and desires to work are no different because we happen to have a child with disabilities. And yet finding childcare is, all too often, impossible because providers are often not set up to cater for individual needs or, if they can and are willing (i.e. gold dust!), the cost is prohibitive to all but the extremely wealthy.

It was a privilege to be able to take part in democracy in action and to converse openly with the MPs and peers involved in the Inquiry. My eyes were opened to a hugely productive part of our political system that we just don’t see via the media lens which is so often focused on the negative.

The Inquiry led to the launch of a report of recommendations for resolving the issue of childcare for disabled children. But, well, what next?

How does this report translate into real change?

Through continued campaigning and pressure on decision makers.

Recently the ‘Counting the Costs’ campaign by Contact a Family was particularly hard hitting in its openness and recognition of the enormous additional costs associated with having a child with disabilities – and therefore the additional imperative on families with disabled children to be able to provide an income for themselves.

And the hard work is starting to pay off.

It’s incredibly early days, and with a General Election just around the corner there is still a huge amount of work to do, but on Monday came a fantastic piece of news.

The Government has decided to introduce legislation to double the maximum amounts that parents of disabled children can pay in to their Tax-Free Childcare Schemes, in recognition of the higher childcare costs that parents of disabled children face, all too often making childcare massively more expensive than the salary it would enable a parent to earn.

Here’s the lowdown from the Government consultation response:

“Representations were made during consultation that additional support should be provided for disabled children in view of the generally higher childcare costs their parents can face. Similar comments were also made during the Bill’s Commons Committee stage when the Exchequer Secretary to the Treasury made a commitment to consider this matter further.

Having considered this, the Government has decided to introduce legislation to increase the maximum amount that parents of disabled children can pay into their childcare accounts, in recognition of the higher childcare costs these families incur. For accounts for disabled children, the maximum payment for a standard three month entitlement period will be doubled to £4,000. This means that a parent with a disabled child will be able to pay up to £16,000 into their childcare account per year and receive top-up payments of up to £4,000. This will be achieved by amending section 19 of the Act through a separate statutory instrument.”

And for the geeks among us the full Government consultation can be found here.

This is a very important first step on the path to levelling the childcare playing field. And it opens a window for further change to address the still significant challenges, some of which I will recap:

  • Only a quarter of local authorities say they have enough childcare to meet the needs of the disabled children within their locality.
  • Almost half of parent carers cannot access the 15 hours preschool education to which all children are entitled.
  • Childcare provision is often completely lacking in its ability to be inclusive for disabled children, either through lack of understanding of what can and should be done to allow disabled children to join childcare settings, or through lack of adequate specialist support from the local authority to provide training, resources and adaptations.

There remains an expectation among local authorities that parent carers of disabled children don’t (or perhaps shouldn’t) work. It is this that is all too often so damaging and it is this that urgently needs challenging if we are to make headway in enabling parent carers to fulfil their legal right to work.

We are lucky in that we live in an area where the local authority is willing to do things differently, and prides itself on providing good quality support to people with disabilities and their families, and yet even here, for our own part, we are still reliant on family to provide after-school help that enables me to keep working. Without this, we’d be in seriously dire straights.

There is still an enormous amount to do, but we pause for a moment to celebrate this small but significant win.

 

The ‘WeWork’ mothers hit Westminster

Three years and three months ago, as I sat listening to the calming tones of hypnobirthing muzac in the garden suite at St Thomas’s Hospital, overlooking The Houses of Parliament, I never imagined that the baby I was about to give birth to would end up taking me to within the Palace walls.

Had I listened to the universe that day there were hints along the way that the little person making his way into the world would be important not just to us but on a greater scale. A (frankly odd and unexpected) hint of politics was thrown in to my stultifying hours in the labour ward and my soothing muzac was interrupted, momentarily, by the arrival of the Under Secretary of State for Health having a tour of the ‘superior facilities’… After she had asked if I was still alive as I sprawled myself in the only position that was comfortable across a faux fur birthing ball and into a bed full of plastic palm trees, I politely declined the suggested photo opportunity 😉

And of course 8 March 2011 marked the 100th anniversary of International Women’s Day, also known in some circles as International Working Women’s Day, which at the time I had no idea would prove to be so pertinent. As friends marched below across Westminster Bridge and beyond, on that crisp, sunny Spring day, representing women’s continued pursuit of equality, I knew nothing of what was to come, and how this baby of mine would alter my world view and throw me into an interest in politics I never knew I had.

As you will know, I have been involved for a few months now in raising awareness of the issues faced by working parents, particularly mothers, of children who have disabilities. Last month, a Parliamentary Inquiry into childcare for disabled children, which facilitates parents to work, was launched, and it was with huge pride that I stepped forward as one of a small selection of working mothers of disabled children to speak at the Parliamentary Inquiry hearing, giving evidence to the group of MPs who are taking the Inquiry forward.

I, along with my compatriots at PremmeditationsRosy & BoMama Lewis and ABA4All, had a unique opportunity to share our, often challenging, experiences of securing childcare for our complicated children, with a view to influencing future policy and clearing an easier path for those who may follow in our footsteps. It was an honour and a privilege to do so and proved to be an intense, emotional and deeply worthwhile experience.

As a small group of women speaking to represent many thousands of our kind, while our personalities, lifestyles, children and careers are all rich in their variety, our experiences shadowed one another with eerie repetition.

Universally, we have struggled to secure adequate childcare for our children. Judged by those who are publicly employed to provide support for families like us, we have been told variously that it is ‘frivolous and selfish to return to work’, that ‘mothers of children like ours don’t work’, that the funding which has been perilously patched in to allow our children to access limited childcare with much-needed 1-2-1 support ‘could be pulled at any time’ and ‘can never be guaranteed for any longer than eight weeks’.

As we explained to the MPs, currently, there is no statutory requirement on childcare providers to take disabled children. As a reflection of that, the majority of childcare providers simply aren’t set up to cater for much beyond the most mainstream of needs. And those rare diamonds in the dust that do exist will tell you that securing funding for children who need specialist input and 1-2-1 support to enable them to be safe and included in a childcare setting is one hell of a crusade.

Until recently, we have relied 100 per cent upon my mum to provide childcare for Orange to enable us both to work. Being entirely upfront, this has been no small issue for our family. If we had stayed in London, we would have been unable to find any childcare with funded 1-2-1 support and a specialist nanny being well beyond our means meant it was impossible for me to return to work. Had we not acted quickly, sold our home and left the city it is almost certain we would have eventually lost our home. With work a closed door to me and now on one income, the finances simply didn’t add up.

We were lucky in that we were able to make the absolute best of a very difficult situation, relocating all the way across the country with mum who could help support us and facilitate my return to work. I will admit this has been a glistening silver lining to our sombre cloud, since Cornwall in all its beauty has brought us a sublime quality of life and our compact and unusual extended family unit is a very happy one.

But many families who wear our brand of shoes have not been in favoured situations like ours. They have lost their homes. They have lost their careers. They have sacrificed their mental wellbeing and more, and face a future more dependent upon the State than they ever imagined. All too often, this is for the simple reason that they could not access adequate childcare for their disabled children. It simply wasn’t there. It is for these families that we speak.

The testimonies we shared at the Inquiry hearing weighed heavy with tales of anguish, determination, fear and frustration. Spurred on by financial imperative and cerebral calling to continue with our careers, even the most searing tenacity to find stimulating, safe, sunny and suitable early years care for our children has not overcome the recurring issues we face of transparency over funding, poor communication from local authorities and equality of access to childcare.

I am not alone in having been able to secure just six hours a week term-time 1-2-1 support for my child. He cannot attend a childcare setting without this support. At age three, he is legally entitled to access 15 hours a week of early years education in a childcare setting however he is prevented from doing so because the Local Authority has only secured six hours of 1-2-1 support.

And should we need more than 15 hours a week? To enable us to do a job part or even full time? Without the considerable financial means to fund both daycare fees and the hourly rate of a trained 1-2-1 carer, which would render most jobs economically unviable, there is currently no solution to this puzzle.

There seems to be no clear, accessible, ring-fenced funding within Local Authority budgets to pay for 1-2-1 support. If there is, we, and many others, have certainly not been told about it. As a parent, it appears that Local Authorities are clawing randomly from pots of money here and there to cobble together some semblance of minimal funding but there is no transparency over what exactly our children are entitled to, or how to access it.

In addition, no-one seems to be want to answer the question over why our children are all too often denied access to the full 15 hours a week of preschool education that they are statutorily entitled to, because 1-2-1 funding to match that simply isn’t there.

And beyond funding and Local Authority bureaucracy, there are societal and attitudinal issues at play. Our testimonies at the Inquiry exposed stories of endless attempts to find childcare places for our children, to be told ‘we can’t cater for children like yours’, ‘we’d love to have him but our insurance won’t cover us’, ‘our staff won’t cope’ or ‘we’ll put you on the waiting list’ (the never-ending waiting list of one…guess who?).

Frankly, it seems from the testimonies delivered to the Inquiry last week that the world is often afraid of our children and so it pushes them away. Finds reason to exclude rather than include. In our part of the world, we have not found this to be such an issue but in the society we left behind in London and the South East, exclusion is a way of life. One parent enquired with dozens upon dozens of nurseries to find a place for her daughter only to be told ‘no, we cannot cater for your child’s needs’. No parent, in the face of a looming financial necessity to return to work, should have to face that.

As parents, we have all had to adapt to cater for our children in ways we could never have anticipated. We were not experts in disability when our children were born. We had no experience of epilepsy care, tube feeding, daily physio for hypotonic bodies, Makaton or appropriate play for the visually impaired. We learnt on the job. We skilled up. Because we had to.

So it stands to reason, as we shared with the MPs, that there is no grounds for childcare providers to deny they can do the same. But they must be granted support in order to be able to do so. After all, they have businesses to run and many of them run an already very tight ship. Our children are, admittedly, expensive. So what’s the answer?

Placing a statutory requirement upon childcare providers to accommodate disability will only work if the funding is made available to support them. Funding to make their premises accessible, funding to train their staff in accommodating additional needs and funding to provide 1-2-1 support for the children who need it. My view is that this funding needs to be ring-fenced at a national level, or we shall face an increasingly unbalanced postcode lottery in service delivery.

But why? Why, when the austerity belt is still squeezing us tight should we be throwing money at something so seemingly niche? Surely we should just accept our lot and suck it up, right?

For a moment, I will put aside my passion about my right to work, and I will give you this. If I work, I am economically active. I am contributing to society. I am paying tax and delivering valuable communications support to businesses to help them grow. I am a professional and an expert in my field. In the business world, I have value to add.

Beyond that, I am a homeowner. An independent purchaser of things, payer of VAT and customer of businesses. I have no need for social housing or support from the welfare system. It pays for society to have people like me in work.

And for Orange? With just the limited six hours a week of preschool that he does get, he is coming on leaps and bounds. His 1-2-1 and nursery team work tirelessly and lovingly to include him in activities, enable him to communicate, teach him to feed himself and move his body. They have the time and the energy to facilitate his development in a way I can only ever limply shadow. The more input he gets now, the greater his chances are of being able to walk, talk and function in society as an adult. The more independence he can gain for his future, the lesser financial burden he will be upon the State.

It is simple economics.

But I shall also leave you with this. I echo Mama Lewis’s words at the Inquiry hearing when I say that the other children at nursery adore Orange. They inquire sweetly as to his differences and then unquestioningly rest them aside and include him in their play. The staff can’t get enough of his cuddles and his infectious laughter. They love caring for him. I know I am not being presumptuous when I say that children like ours bring light and joy to those that surround them. Adults and children alike learn that those who are seemingly less able than themselves contribute to the group in softer, less obvious ways and that the group is a richer, happier mix for their inclusion.

Mama Lewis asked the Inquiry ‘Are these not the values we want to instil in the next generation?’ The values that will be the building blocks of a society that genuinely cares for those who are vulnerable.

There is a slowly dawning realisation that inclusion is actually good for everybody. But this dawning is fragile and at risk of being swept aside by national and local policies that appears hell-bent on whipping the carpet away from under the feet of those in need.

And so I will continue my involvement with the Inquiry as it proceeds, playing my own small part in working towards a future that is one step ahead of our own.

Thank you to all the articulate and brilliant women who stood together in giving evidence to the Inquiry. We made a formidable team…

Here’s a great little illustration of why we did what we did: #wework