Category Archives: Stories

Stories from people whose lives have been affected by the cuts.

Spend to Mend

WHAT DISABILITY?: Spend to mend

After one month on the road, co founder Martyn Sibley has completed his Britain’s Personal Best challenge – rightfully named “What Disability?”. This challenge has brought up to the surface many questions about disability issues; here Martyn shares his views on what could, and should, be changed.

Well guys, we did it! Kasia, Martin and I traversed the UK from John O’Groats to Lands End. I hope you’ve been following the articles on Disability Horizons, the videos on my blog, the flickr photos and social media updates. The planning and executing of this trip was exhausting. However the media and the public really grasped the message that we carried.

I do not want to repeat the magnitude of what a personal challenge this was. This has been documented sufficiently for the Britain’s Personal Best project (www.whatsyours.org). Instead I want to share my reflections on a wider social scale.

I am so passionate about disability issues, I was very sad to see and realise how much more work we have to do in 2013. Disabled people should not need or want for anything relating to their medical condition. Especially things that are so basic. Continue reading Spend to Mend

A mother’s story

What is it like to be in a position where you need support from the state? A mother tells us of her daughter’s experience.

About 2 years ago I was contacted by letter to say that 2 people were coming round to our home to inverview us regarding my daughter receiving DLA.  This turned out to be the second time in about 4 years that someone has contacted them to say that in their opinion, she should not receive benefits.

I was unaware at the time, but when 2 officials arrived, their attitude of suspicion made me immediately aware that I was being interrogated. This was followed up some weeks later by a visit from a (presumably retired) gp, who again acted as if she was claiming money under false pretences.

I will tell you that my daughter, now aged 37, contracted a rare virus at the age of 17 months which caused brain damage – I would say she has an academic age of about 4 or 5 and a social age of maybe 12 or 13.  She has always, and still does, live at home.  In the following years she has been diagnosed with severe & multiple allergies, lupus, meningitis which cause the loss of some toes & now kerataconus wich has caused virtual blindness in one eye.

Anyone speaking to her for more than about 10 seconds would realise there was something pretty seriously wrong.  However, we were treated the whole time with suspicion – this culminated in a final question from the doctor as to whether I had anything else to add.  I commented how it was not easy to bring up a daughter alone as a one parent working mother, for most of her life with problems physically & mentally such as hers.  Her reply was – “I meant medically”.

My daughter was made to sit with us the whole time at both interviews.

Having spent years encouraging her & telling her how clever she was when she achieved something small, this was ruined by 2 visits during which I had to tell them all the things she can’t do.

Amongst the illnesses she has, brain damage is irreversible, lupus is incurable, allergies cause problems on a daily basis, she will never grow new toes & the keracatonus will, sometime, affect her other eye too.

I can understand that these officers & the gp must see lots of people who do try to claim benefits falsely but their attitude caused both of us to be in tears after they had left.  It then took 3 months for them to reach the decision that she is entitled to the benefits she gets.

The following year, she was subject to another assessment, another 2 hour stint, because of local authority cuts to see whether she qualified to keep the 2 days she attends at a local creative arts workshop.  She does.

Now we’ve heard that DLA is changing to PIP so another assessment will take place.  Apart from costing the Government a fortune, this continual fear & uncertainty has given me, amongst other things, high blood pressure.  In my opinion, they’ve targeted the very section of society who are the most vulnerable & are unable to speak up for themselves. When you have it on record the problems that my daughter has, I cannot understand what you gain by these reassessments.

 

 

The reality of the bedroom tax – David’s story update

As we start to hear about the huge surge in applications for discretionary housing payments here is a real person who is being affected by the bedroom tax. It’s hard to believe this is happening:


Rosemary Burslem
, David’s mother tells us David’s story.

David is 30 years old. He is a great character with a wicked sense of humour. He is autistic & has a severe learning disability as well as some behaviours which are described as “challenging”.  When things went “pear shaped” with is direct payment package he had to leave his home and come back to live with us for 2 years.  During that time we began to make plans with him to move out again to another home of his own. David’s Social Worker said he would have to share his home with another person with a learning disability, to keep his support costs down. It was agreed she would find possible housemates for David & that he would be introduced to them to see if any were compatible.  However, although a few names were mentioned, no-one was found.

Social Services recommended that we buy in a service for David from a provider. So we had to conduct a full blown tender exercise just like Social Services do. Finally we selected a provider. Social Services were supposed to contract with us & we were then supposed to form a contract with the selected provider. so that we would still be in control of David’s support, even though he wasn’t getting a direct payment. However, Social Services never produced our contract. In the end we gave up & allowed Social Services to contract directly with the provider as things seemed to be working out quite well. The provider gave us plenty of opportunity to be involved in making sure they delivered a person centred service for David.

Once the provider was chosen I contacted Phil, who was the first person we employed when using direct payments, to ask if he would like to work with David again. To our delight he said he would, and so he applied to the provider to work with David and has been with him ever since. He is now the team leader.  All the current team members have been with David between 6 & 8 years! They are brilliant! They really care about David & their support is excellent.

Although no housemate had been found for David, Social Services said he should have a 3 bedroom house, so that when they found someone to share with him s/he could move in with him. The 3rd bedroom is for the personal support assistants to sleep in.

An ideal house

We searched until we found the ideal house for David, not far from our home. One of the problems at his first house was that it was a mid terrace & not at all sound-proof, so, understandably, the neighbours complained when David had a “megatantrum” & screamed & slammed doors. Also it was in a very narrow cul de sac so the parking was restricted. The current house is semi detached with the kitchen, bathroom & David’s bedroom on the outside wall & the stairs run up the middle. Also, you can drive up the back lane into the garden where there is room to park 2 cars on the drive. The garden has high walls & a high double gate, so if David decides he doesn’t want to come into the house when he returns from an activity he is safe in the garden and his personal support assistants can keep an eye on him. Another bonus is that the back garden is big enough to accommodate a trampoline & a swing – both valuable therapeutic activities for David. At the front of the house there is room to park 1 car & opposite there is a layby where several cars can be parked. So, during almost 8 years that David has lived at this house there has not been 1 complaint from the neighbours about noise or parking.

Social Services agreed this house would be suitable for 2 people with a learning disability to share & a housing association agreed to buy it. David moved in June 2005.  What I didn’t realise at the time was that the house was set up as normal social housing, when really it should have been set up as supported housing if 2 people were going to live in it.  As far as I understand it, Supported Housing means that people share some areas of a house, and that equipment for, or mantenance of the shared areas is provided as a service.  Some of these service costs are covered by housing benefit.

When I pointed out housing benefit paid for all of David’s rent the social worker stopped talking about having to “fill the void”

During the 1st year we kept the 3rd bedroom locked so that David would not think it was his.  However, Social Services still did not find anyone to share with David. Normally, if there is a spare room in a supported house social services have to pay the cost of the rent for that room.  Presumably, the new social worker didn’t realise either that it was social housing, not supported housing.  However, the house is in a “deprived area” so the rent is low.  When I pointed out housing benefit paid for all of David’s rent the social worker stopped talking about having to “fill the void”.

So we decided to turn the spare bedroom into an activity room for him. It has in it his exercise bike, his keyboard & electric drum kit & all kinds of games & activities. There is a table which he uses for some of the activities. He also uses this table to sit at for meals if he decides he will not come downstairs and engage in his home & community acvitivies – which is described as “non-compliance”.  If he is non-compliant his support workers encourage him to eat his meals in the activity room and engage in activities in there, otherwise he would just lie in his bed all day! So he uses the room for planned activities such as music making sessions or craft, as well as at times when he is “on strike” as we call it!

Over the years David’s team & other professionals supporting him have voiced the opinion that, in fact, although he has a “spare” bedroom his house is not big enough to accommodate 2 people with a severe learning disability & their support teams.

David has really settled in this house.  He gets on well with his neighbours & has become part of the community.  He has another “challenging behaviour” which is described as “behavioural outbursts” but which we call “megatantrums”. These episodes are like the “Terrible Twos” except they are the “Terrible Thirties”! This behaviour has greatly diminished and we feel this is due to the stability he has had for the last few years. Now all of this is under threat due to the “Cuts”!

As David is unable to work he is on housing benefit which pays his rent.  Under the new housing benefit rules you have to pay 14% of your rent if you have a spare bedroom. (People in supported living are exempt from the “bedroom tax” so if David’s house had been set up properly he would not have to pay it).  So David now has to pay £13.58 per week for his Activity Room. (The staff sleep in room is exempt). David’s only income is from benefits, so having to pay this means his income is only just more than his expenditure.  I appealed to the local housing benefit office against their decision, explaining it wasn’t David’s fault that he has a spare room – it is Social Services fault. However, as I expected, the appeal was turned down. I applied for Discretionary Housing Payments for David.  This was turned down too. The judgement said:

“After the additional rent of £13.58 has been paid, his income exceeds his expenditure by £0.16. There may be scope to reduce the expenditure if required.”

Now – here’s something that is even more worrying than the Bedroom Tax.  Wrexham Social Services have a policy of not fundng “single service user projects” & have now said that David must share his sleep in support with another person with a learning disability to cut costs.  (To be fair, they said that 10 years ago but they didn’t find anyone else to share). So, they now say they would like him to live in one of their supported houses where he would have to share a kitchen and garden and sleep in support. There are a limited number of these houses & vacancies do not occur very often. They have shown us their only vacant property but we do not feel it would meet David’s needs. The main reason for this was there was no vehicular access at the back, there are open plan gardens at the front and there is a main road only a few hundred yards away. They said they would enquire about making an enclosed safe area at the front but I doubt this could be done satisfactorily. It was a normal semi with a small extension and David would have to live either on the ground floor or upstairs. There were several things that would need improving within the house too. Finally, it was in a village outside of Wrexham, but we know that David would prefer us to live within walking disance of him so that we can visit him easily and reduce fuel costs.

We also think it would be difficult, if not impossible, for David to share a kitchen.  He has a lot of very obsessive behaviour.  One of these behaviours is that he takes food (including perishable food from the fridge), cutlery and utensils out of the kitchen and puts them over his bedroom floor! So you would need double storage space and 2 fridges so that the second person’s food etc could be locked away!

On top of that he does all sorts of other things obsessively, such as taking banana skins out of the compost bins & putting them back with the bananas, putting dirty cups into the cupboard and balancing them precariously near the edge so that when you open the door they all fall out, and switching electrical equipment off when you are in the middle of using it! Much as we love him, these behaviours used to drive us dotty when he was living with us, so how could you expect another person with a learning disability to tolerate them?

David also finds it stressful to be with other people (or animals) whose behaviour can be unpredictable.  This includes small children & people with learning disabilities. He was not happy at school, as he was afraid of some of his class mates & the educational psychologist recommended that he change school because of this.  He was a little more relaxed at the next school, but was still very aware of some of the other students. (I am sure some of the students found David’s behaviours difficult too!). He also finds it difficult to cope with people who are very “in yer face” and invade his personal space.

Since leaving school any attempts to get him to attend college courses or share activities with people with learning disabilities have failed. He always gets very anxious and it is clear he is not enjoying himself. So, unless someone was found who David really did get on with, and could also cope with David, you would need to timetable 6 kitchen “slots” each day so that each resident could prepare their meals without the other being in the kitchen! So far, social services have not yet identified any people for David to possibly share with.

The other problem is finding a property if there is nothing available in the current supported housing stock.  Local housing associations are not buying properties or doing any major work because they can no longer get social housing grants from the Welsh Government.  We have put David on the housing waiting list but it seems very unlikely that anywhere will be found.

Even if a suitable smaller property is found so that David does not have to pay the bedroom tax, the rent will amost certainly be higher than his current rent, so housing benefit will have to pay out more! At the moment his current full rent is £97 a week. The rent for the house we looked for was about £30 more than this!

If he remains on his own how will David pay for 3.5 sleep ins a week? This would be about £9000 a year at the provider’s rates! At the moment the Independent Living Fund pays for David’s sleep ins, so they will continue to pay for this until the fund closes at the end of March 2015.

We are currently exploring all the options.  If any readers have any ideas I would love to hear from you!  Please write to me at pedroburslem@talktalk.net.

I have requested a Best Interests meeting so that we can discuss the options & hopefully decide what would be in David’s best interests and how this might be achieved.  I have also requested a review of David’s Unified Assessment. This was due at the end of February but he has not yet been allocated a social worker.  I am awaiting details for both of these.

I appreciate that a family of 2 adults and up to 4 small children could live in David’s 3 bedroom house. I also understand that nobody yet knows how the alternative ILF funding will be administered in Wales and that social services are going to have other budget cuts, so they do need to save money.

However, David and people like him must have their needs met.  For someone like David, who has complex needs, making the wrong move could escalate his challenging behaviours and he would then need more resources to meet his needs!

Rosemary G Burslem

There is a link to David’s situation on the Stories part of the Campaign’s website when his MP raised the matter in Parliament.

Calum

Calum is a lively eleven-year-old boy who loves being outside: he enjoys playing in the park, going to the shops, riding on a tandem with his mum in front, running around, and going for walks. Calum is autistic and his difficulties with sensory integration mean that he finds it difficult to stay still. This makes it very hard for him to sleep. In the last 11 years he has never slept for more than four hours at one time. Many nights he only sleeps for a maximum of two. His mum says:

Calum only rests when he is not well. I worry all the time about these cuts. I am desperate to keep him at home, but they tell me they might have to reduce the help we get because of the cuts. I really don’t know if I will be able to go on if we get less help than we do now. I only sleep two hours every night! I don’t want him to go into care. I want us to be a family. But I need to sleep! I have the fear of God in me that I will not be able to cope.

Two short stories

How the cuts affected Calum and Olivia.

Calum


Calum is a lively eleven-year-old boy who loves being outside: he enjoys playing in the park, going to the shops, riding on a tandem with his mum in front, running around, and going for walks. Calum is autistic and his difficulties with sensory integration mean that he finds it difficult to stay still. This makes it very hard for him to sleep. In the last 11 years he has never slept for more than four hours at one time. Many nights he only sleeps for a maximum of two. His mum says:

Calum only rests when he is not well. I worry all the time about these cuts. I am desperate to keep him at home, but they tell me they might have to reduce the help we get because of the cuts. I really don’t know if I will be able to go on if we get less help than we do now. I only sleep two hours every night! I don’t want him to go into care. I want us to be a family. But I need to sleep! I have the fear of God in me that I will not be able to cope.

Olivia


I was telephoned the week before Christmas by Olivia’s Community Physio Manager who told me that her weekly physio visits would cease from January “as part of the cuts”. These visits have been essential to maintain Olivia’s mobility and good circulation, prevent deterioration, treat acute conditions, advise and work with the CS team on exercise programmes and liaise with the GP and OT team.

The physiotherapy treatment has been thought necessary since 2002 (and has played a huge part in keeping her in good physical shape) and now it seems overnight it is not. So much for care on the basis of need. If someone like Olivia, who is profoundly disabled and dependent on the care team, cannot access this service, who can?

Supporting people funding


One local authority recently cut Supporting People funding to 22 profoundly disabled people from 1061 hours to 192 hours per week, effective from April 2011.

This devastating reduction in support has prompted the support organisation in question to warn the local authority that the 22 disabled people will be at risk of serious injury or worse.

Dignity?


I’m a vicar. I recently conducted a funeral service for a family whose daughter had cerebral palsy and very complex disabilities. The family had been caring for her full time, and therefore relied on benefits to live. When their daughter died they found they could not afford a headstone for their beloved daughter and there is currently no help available.

Grieving families in this dreadful situation also have to struggle with a sudden drop in their already very low income and further fear and insecurity about losing their homes.