Drowning in Direct Payments

From the day our daughter was born we wanted to make sure she had a life.  Her twin brother died at a week old.  We dreamed of a life with a rainbow and a pot of gold at the end.  A life where she would have friends and relationships, go to mainstream school, reach her academic potential, work, travel, have lots of fun and buckets of love.

A life worth living in the same way as we wanted and hoped for our other 5 children.

We also knew that she would be cute and disabled as a child but then as she got older she would no longer be cute. She would be living in a world of prejudice, discrimination, fear and lack of respect. We wanted to give her the life skills to make sure she could survive in a world that was not ready or welcoming to her.

We knew also that we would do everything we could to give her the right to make choices, and have control over her life and NOT to end up in some crappy care home where she would be vulnerable to abuse, neglect and dehumanisation as a non-speaking severely disabled person.

We took the road of inclusion which meant at 5 years old she had a powerchair to get around, a communication aid device to talk, and a cochlear implant to hear.  It also meant that she was the youngest person in our area of Calderdale to receive Direct Payments.

For 20 years plus we have managed a small budget and a team of personal assistants.  Sometimes up to 9 people.  We pay more than the hourly rate as each person we recruit is skilled, enthusiastic, motivated, has excellent communication skills and some have first class British Sign Language skills. They are all exceptionally flexible and get a lot out of working with our amazing daughter.  As a result she is able to do the things that she loves, that are purposeful and that give her self-worth.  She is above all safe and happy.

For that we are penalised.  We drown in the whole Direct Payments dream.  Self-directed support is a great concept. We doggy paddle in deep waves with no life jacket.  No one there to come and rescue us.  Feeling dumped by our local authority who are happy in the notion that we save them money.   However, we never wanted to be unpaid managers (or even paid ones), who have HR policies and procedures in place at the risk of having to be sued and go to tribunal.  The horrendous headaches of recruitment, the stress of rotas, of no emergency back up teams, of PAs going off on maternity and no budget to cover them, the never ending worry of the budget being cut and the social worker doing another bloody assessment.   I do the nights as there is not enough in the current budget to cover this and we have had volunteers for 7 years but this will end in July 2019 due to new policy (!).

Our job is now being to write a care plan/support plan, policies, guidelines, induction packs, training programmes, competency templates, medical files, communication book, diaries, appointments and medication journals, calendar for events and going out.

Burdened, exhausted and knowing that this is not sustainable.  Our daughter is fearful that when we die there is no one to do this.  We need an increased budget so she can move out with a team of PAs.  The choice is limited – care home or direct payments.   We need a team in the community to assist us, to have back up when things go wrong, to have the co-ordination and management done by someone else.   Then we can go back to being parents.


The Hope Project, Lesvos


Since 2015 and seeing the harrowing photos of the boats filled with children, young people, mothers, grandmothers, and family members from Syria arriving in Lesvos, I have desperately felt the need to help. Whatever I planned to do would feel like a drop in the ocean.    It was not the right time in my life to be able to help in Greece at that time so instead in 2016 we opened up our home to refugees and asylum seekers to offer them a safe place to live until they felt able to move on here at Havoc in Halifax.

Our house became even more of a fully inclusive and welcoming home.   We learned so much from the amazing young men who have lived with us and who have all become our extended family.   We have shared their tears, fears, and their heartbreaking stories whilst seeing their ups and downs adjusting to life with the Clarkes and in Halifax.    Over the last few years we have become more involved with our local organisation St Augustines      http://www.staugustinescentrehalifax.org.uk and each one of our children has played a part in volunteering either with the Centre or on trips we now do to Calais with  Calais Refugee Aid and Care for Calais.     https://www.facebook.com/CalaisRefugeeAid/

Nikki now works full time with refugees locally 2 days a week with an Immigration Lawyer and 3 days at the Centre as a Case Worker.   Jake has returned recently from spending a month of his summer holiday with an organisation based in Chios, another island in Greece.   We have all been hugely rewarded in so many different ways by working with refugees.                               hopeproject10

Meanwhile, returning to 2015 the Kempson family who have lived in Greece for 18 years were some of the first to rescue and provide aid to refugees on the shores of the North Coast of Lesvos. http://the-kempsons.com/

“Since early 2015 we have been rescuing providing aid to refugees. They estimate that in 2015/2016 we brought in 600.000 people on the north shore, Although the numbers of arrivals have dropped boats are still arriving and we continue to help.”

Erik, Philippa and their daughter Ej then began to encourage volunteers to come and assist them and began their organisation called the Hope Project               https://www.facebook.com/HopeProjectKempsons/

This summer we decided to send a small Clarke team to Lesvos for our “holiday” leaving chaos and havoc at home whilst Andy has had the main part of the house decorated; Nadia has been to Womad, an international arts festival in Charlton Park; Reay has returned from her volunteering in Tanzania; Jake has been busy coaching tennis and Sean and Charlotte have been packing up their stuff to move out to Thailand.  Andy has said the last fortnight has been a typical one in our lives and has kept remarkably calm even when having to do some emergency back up PA work.

Nikki, Samara and I have been volunteering now for nearly two weeks and are heading back this Saturday.   The opportunity has been more than working and distributing much needed donations – it has given us the chance to develop relationships with the rest of the team of volunteers who work at the Hope Project and those who are connected to other organisations.  Most of whom are refugees either living on Moria Camp (known as Hell)  https://www.youtube.com/watch?v=bltWKd82tzEhttps://joindaproductions.wordpress.com/ , or just outside the camp in crowded conditions with very few facilities.

We have been working every day from 10 to 4 sorting out scarce donations and meeting the families and adults who come to the Hope Centre to get clothes, nappies, baby wipes, hygiene items, each child gets a toy or a drawing book, fresh water and plenty of smiles and sometimes a cuddle when the parent needs a bit of time to chose their clothes.

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There are queues of people outside the project waiting to come in on a morning.  Some of them have walked an hour and a half from the camp to get there.   The clothes are getting scarce as the “shop” is so busy and we are in need of the following items in good or new condition: Men’s T-shirts, trousers, shorts – all small.   Shoes – all sizes.  Children’s toys.  Women’s long sleeve blouses, T shirts, and leggings or jogging pants.   The list goes on.   Money donations can be sent directly to buy items here in Lesvos on https://mydonate.bt.com/charities/thehopeproject.  Yesterday we went to a shop and bought small plastic toys to give out to the children and to bring some hope and joy into their lives if only for a few moments.  Every pound is well spent.




I will be writing over the next week some stories of a day in the life of a volunteer and how you can help back in the UK.

Aanchal Centre for Differently Abled Children in Rohini, Delhi and the Qutab Minar.

Nadia Clarke

The next day (Saturday) was the craziest whirlwind morning of my life! Oh my God!!

I went to Aanchal centre, Rhohini, Delhi which is a  Christian church school for differently abled children. I had asked when the trip was being planned to visit a school as I wanted to see the differences in cultures and meet some people too.


I did not realise how many people would be there and that  they all were waiting for me to arrive.

IMG_20170408_105607585_HDR I was quite shocked to be honest and overwhelmed too. Lots of people were curious and taking photographs and it all felt a bit of a dream really.


I gave a speech about my life, communication methods and showed some videos to them.


There were students performing songs and dances.


I was watching some of the students and was feeling a little bit overwhelmed by it all, even though the children…

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White Noise

Justice for Nico

A few weeks ago on Twitter a concerned and hard working woman was talking about her job training future social workers and she used the phrase a “privilege to work with their minds and values before they are set free into practice”.  This made me think about those social workers in training, their aspirations and hopes for the future.  Their yearning to make a difference in the world and their thirst to do good.

It also made me wonder at what point their training includes treating parents of disabled children and adults as if they are a blot on the landscape?  At what point are social workers told to ignore parents, belittle them, bully them and make sure that their wishes are ignored?  At what point are they taught to act as if the words of the parents are simply white noise?

I certainly can’t imagine the woman on Twitter…

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Do I press the send button or wait and make changes?

I have not sent this email yet and had to hold back from pressing the send button.

Should I?  or what changes would you make to it?

Dear Principal
Each letter we have written has taken time, energy and is full of love and respect for our daughter.
Each email we have written has taken time, energy and is full of love and respect for our daughter.
Our risk to do what most people would never dream of doing makes us better people for the experience.  We have taken risks since the day she was born.
A head teacher told us “we have never done this before, we will make mistakes, but we want this to happen.”  He took a risk and the school was a better place for it.
Sadly, I do not hear anything from yourself, little compassion, fear and silence.   No personal response to our letters and emails is downright rude.
What a shame.
your sincerely,

My daughter My Teacher

my teacher

You teach me every day:

How to smile in the face of adversity

To bounce back when I have been slapped in the face





Not to judge

Be committed and stay focused

Be Kind

To find my inner strength

To be resilient

Accept others

Being diplomatic when I could shout instead

How to really, really listen

Carrying on regardless

How to laugh and cry at the same time

How to communicate with no words

Being fearless

Taking each step as it comes with valour and courage

To dream big and to go for those dreams


Doing small things that make a big difference

How the world needs to change not me or you

Not to let the buggers get you down


Rescued at Halifax Train Station


What do you do when you arrive on the platform at Halifax Station from a meal in Manchester at 1030pm and the lift is broken to get up to the exit  to get in your car to go home?  There are about 30 steps up to the main hallway.  Halifax Station is relatively quiet at that time of night and is definitely not the sort of place you would like to hang around at for long.

You are with your Personal Assistant (or worse on your own) and you can’t be left on your own.  There is no attendant around.

Other than panic (which the PA did slightly – god love her!) what was the option?

  • Ring someone for help? – no number available that was emergency out of hours
  • Get back on another train and get off at another stop and get a taxi back to Halifax station to pick up the car? – worry that another station would not have disabled access. Worry that another station would have no accessible taxi rank (highly unlikely)and you would be left stranded
  • Sleep the night on the platform? Undesirable place, cold and damp and therefore not an option
  • Scream for help?


Luckily my daughter Nadia did not actually have to scream for too long.  A tough and rough looking stranger arrived to catch his late night train after his shift at the scrap metal merchants.   Never judge or make assumptions.  His heart was as big as his physical appearance filled with kindness and compassion.

His communication with Nadia was great.  He asked her if it would be ok to lift her and carry her to the seats at the waiting area.   When she agreed he bent down and scooped her up in his large but gentle arms telling her to hook her arm around his neck.


He safely delivered her to the seating area and then returned down the steps to get his equally strong mate to help him lift the wheelchair.  He was told by the PA that it usually takes 4 men to lift it at which point some rather puny, younger blokes on a night out eagerly sprinted in the opposite direction – determined to get the next train rather than volunteer their services.


He and his mate then carried the electric chair up the steps and right up to where Nadia was waiting.  Both were sweating profusely but still managed to smile between gritted teeth and pained expressions.   Once Nadia was happily back in the wheelchair he continued chatting away to Nadia explaining he was pretty tired due to having taken four cars apart that very day.


He waved goodbye to run for his train – he had no mobile phone and was not on facebook so we have to thank him via this blog and hope that someone somewhere will know him and thank him on our behalf.  We owe him a beer.


As he left another stranger approached Nadia and PA who was extremely friendly and confident with her communication.  She had been watching what had happened and was checking that everything was ok and if Nadia was alright.   Like a long lost friend she spent a couple of minutes talking to Nadia and then left.   We would like also to thank Julie Hesmondhalgh (ex Coronation Street Hayley Cooper) for her consideration and acknowledgement of the situation).


In the meantime, we are trying to get in touch with Northern Rail to find out what their emergency policy is on broken lifts.







Not sure where we fitted in but proud to be there nonetheless!

we were here 18 years ago delivering a letter to Tony Blair.

we were here 18 years ago delivering a letter to Tony Blair.

We did not quite fit into the Disabled People’s Movement as we were marched at the front of the Anti- Austerity March with “Disabled People Against the Cuts” on Saturday June 20th down to Parliament Square.

But I am not sure where we did fit in?  It would have been great to have been there with other parents of disabled children and young people although for many this was impossible  – too hard to organise, no child care, no extra money to pay for the travel, and Saturdays are a tidying up day or a family day out day or a day to recover from the busy week.

The cuts/savings have already impacted many of us and worse is yet to come.  What a powerful message it would have been to have met up and joined together to show this present government that they can no longer take away or reduce the numbers of our Teaching Assistants, our Direct Payments, our Youth Services, our CAHMS, our benefits, Independent Living Fund, our Play Services, money for playgrounds, our Wheelchair Services and god forbid our wonderful NHS.  Many of us have kids who would definitely not be alive if it was not for the NHS.  The list goes on and will go on.

I was proud to be with my daughter Nadia, pleased to take part and to show that we care enough to travel all the way to Halifax and back – exhausting trip with gear, electric wheelchair, extra batteries for the communication aid, rain gear, sun gear, food, drink all making up our own protest survival kit.  On Friday we were at a gig in Leeds, outdoors watching Paulo Nutini who is a family favourite so were also recovering from too much fun the night before!

For Nadia it feels a confusing time – we walk on egg shells as her 7th Social Worker has clearly told her that there is no money for her to live independently.  Thanks to Calderdale Social Care topping up the ILF they will not increase her budget any more so that she can live independently.  Imagine being told that at 23yrs old when you have gone right through mainstream school, college with plans to carry on your education, get a job, have a relationship and of course leave home.

At 23 years old Nadia does not want to have to be particularly political.  She wants to understand herself, who she is, where she fits in to society, and she wants a life.  A life full of the things that 23 years olds want to do like keep learning,  hang out, go to festivals, travel and meet new people.

No one will truly understand the challenges to having a life unless they are disabled and have been through it themselves.  So all I can do is to tell her how proud I am to have her as my daughter.  To tell her she is one in a billion!  To tell her she is the most amazing incredible person I have ever met.


The night before a birthday


The night before each of my children’s birthdays is an emotional experience.   Lots of thoughts and reflections whizz through my mind alongside many images.

As a mum of a disabled adult with  complex needs the whole birthday experience is a roller coaster of feelings and memories.   Nothing is taken for granted .

Every minute, every hour and every day is precious.  Life and our children are only loaned to us on a temporary basis.  I know too many mums who have lost their children.

The milestones we reach together are celebrated and each one feels like we have just climbed an enormous mountain. Hard work getting there but goddam worth it for the view at the top.   Enjoying the descent down  and the times that feel easier, building our resilience, but aware of the next challenge around the corner.

After having  come so close to losing a second twin baby every time I hear an ambulance years later it still brings back a shudder down my spine.     Sirens make me cold, I can feel the air being sucked out of me, my legs feel like jelly and I breathe a sigh of relief as I automatically do a double count of where everyone is, just to check we are all safe and sound.  It is a habit.


Family holidays, days out, Sunday dinners, seeing the kids smile together, laughter, the dogs sneakily eating the chicken sandwiches, walking to school with all 6 children, camping, driving altogether in our big green van, having a house full of friends round for a BBQ, sick children coming into our bed to feel safe and loved, and cuddles on the sofa.  That is what life is about.

Another birthday comes and goes.  Another candle for Liam.  Another year of making the impossible possible.  Another year of being amazed by my daughter.


What’s the point of a parent carer’s needs assessment?


In all the excitement of Care Act Day, it is important not to lose sight of the fact that important provisions of the Children and Families Act 2014 for parent carers of disabled children and young carers also come into force today (1 April 2015).

I plan to blog about the duties to young carers contained in both the Children and Families Act and Care Act shortly. However this post aims to answer a simple question which I have been asked a number of times – what’s the point of the new parent carer’s needs assessment (PCNA) introduced by section 97 of the Children and Families Act?

One thing is crystal clear – there is no new right to services for parent carers of disabled children, as there is for family carers of disabled adults under the Care Act. What we have for parent carers of disabled children is…

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