Showing posts with label disabled rights. Show all posts
Showing posts with label disabled rights. Show all posts

Saturday, 8 August 2015

Consideration for disabled people when travelling

Sunset over Bartres
Most years at this time, I travel to Hosanna House in Bartres in France with a group of disabled people, as a volunteer helper with HCPT (please note this blog is written totally in a personal capacity and does not necessarily represent any view or policy of HCPT). I have written about this before, as I personally find it to be a fantastic experience. In our group there were 36 people. Approx 1/3 have some sort of disability. Some have Downs Syndrome, some cerebal palsy, some are just a bit old and rickety and can't walk too far. I've been a member of the group since 2001. In that time I took my mother, who was housebound after a stroke, on five occasions. When shen passed away, I took my cousin, who is my age and has Downs syndrome on four occasions. Unfortunately she has deteriorated and the views of the care home where she lives is that it would not be in her interests to go.

Our Group
This year, as I have in other years, I took two of my teenage childen. They have been going for many years. I do not force them to go, they opt in. What do they do when they are there? Well they don't have TV or easy access to broadband. They go to mass every day (HCPT is a faith based organisation and the focus of trip is around the shrine of Lourdes, which is about 4km from Bartres). My children do not attend mass in the UK regularly. Although they were raised in the Roman Catholic tradition, like many teenagers, they are not overly keen on going. Apart from Xmas and Easter, requests  to attend mass are usually politely declined and attempts to force the issue are met with furious argument. When they are away, they attend without fuss and my son plays the violin at mass (something he would never do in Mill Hill). I suspect that the daily mass is not the reason they attend. It probably sounds like hell for most teenagers, from the above description. I consider my kids to be quite typical teenagers. Whilst I love them to death, they are very typical in their lifestyle and are no saints. They do however find the week to be a brilliant experience. In their everyday life, they don't have much contact with disabled people. On the trip, they spend every waking minute in the company of people with issues and challenges. If you haven't had much contact with disabled people, it may or may not come as a surprise that many are highly intelligent. They have exactly the same wants and desires as the rest of us. They don't want to be patronised. They are not particularly keen on basket weaving or other activities which are often part of activities that they are asked to partake in. They want to have some fun. One of our group, Helen, who is severely disabled with cerebal palsy and is confined to an electric wheelchair, requiring lifting with every activity that can't be done when sitting down, is one of the most funny and intelligent people you will meet. Several years ago, on a trip, she shocked a rather "holy Joe" pilgrim who asked her what the NHS could do to improve the quality of her life. The answer "Get me a male prostitute" was not quite what they expected. Helen can be hard to understand, but it is always worth the effort. When HCPT remodelled Hosanna House, she advised the designer on what they should do to improve accessability. Some of her suggestions were acted upon and have made a huge difference. Some weren't (annoyingly for Helen when she is in a bedroom, she can't get out without help as the doors open inwards).

My elder daughter was assigned to care for a teenager with Downs syndrome (along with a friends teenage daughter, who also attended). This was a huge challenge for my daughter, who has not been a "primary helper" previously. The young lady in question was lovely, but also rather mischievous. Basically she needed to 24 hour companionship for a number of reasons (not least because she was rather keen on winding everyone up!). My daughter found the experience to be a very rewarding experience. My son, who is younger was primarily involved in tea making duties and pushing the elderly members of the group around on trips. He spent much of his free time playing table tennis with another teenager. Again he had a great week.

Often people assume that such groups as ours are all very religious people seeking redemption. I can only speak for our group, but I think this couldn't be more wide of the mark. The group are primarily driven by a desire to help other people and HCPT offer a great way to do it. I've no idea how many of the group are regular church attenders, but I'd be very surprised if the total was above 50%. Various faiths have been represented. After Roman Catholics, CofE are the next most well represented group, but we had Methodists, Church of Scotland and Evangelical members. There are also quite a few people who dont ally themeselves with any formal group, some who are no faith at all and a few people of Jewish and other non Christian traditions. In the group, none of this matters. We are a group. HCPT has an ethos of doing everything together. This means we eat together, we socialise together. It means at meals, we try to sit with different people every day, so little cliques are avoided. our group has a strong musical ethos. As I mentioned my son plays violin, I take a guitar (this is the only time I play guitar in mass, being primarily a punk rocker), and we had a clarinetist and an organist. As  well as music in mass, every evening we have a bit of a sing song. One of the group, Margaret is  a folk singer of note, playing regularly in York. Her speciality is risque ditties. She's 80 next week and her party piece this year was "Teenage Dirtbag".

One other thing which must be mentioned is the food at Hosanna House. Jean Bernard, the Basque chef ensures that we feast like kings and queens. The food is delicious and all freshly prepared. Fresh salads, regional delicasies, finished off with the finest cheeses. Meals are accompanied with a glass or two of wine, for those who partake.  Before I first attended, I assumed the meals would be of school dinner quality. They are actually some of the finest meals I've had. My kids have developed a liking for duck, Coquelles St Jacques and many other foods which previously they would have point blank refused. As there is a lot of physical activity, you get hungry and there is no choice of what you get. As it is all delicious, this isn't generally a problem (if you have a special dietry requirement, this is catered for).

It is impossible to describe how the dynamics of how ther group works, or why it is a joy, not a chore. It is also impossible to describe how much personal joy I get from the experience. My view is that anyone who has a heart and who likes the company of other people would get something from the week. I'd strongly urge anyone who cares about people to consider volunteering as a helper. HCPT is not for everyone. There are secular organisations who do equally great work, although I've not been with any. I did however speak to some of the disabled people. I asked one guy, which he preferred, his answer surprised me (why I don't know). He said "I like both, they are both different. Wouldn't you get sick of steak if you ate it every day". This guy was someone with no religous affiliation. I asked him if he enjoyed the daily mass. He said "It pulls the group together". He also highlighted something I hadn't appreciated. Many disabled adults have seen many friends die. They've also lost family and for them, the section of the mass where we are encouraged to say prayers for specific people and intentions are perhaps a highlight. Often people will break down in tears when they say their bit. At first I thought this was a bad thing, but when I discussed it, it became clear that for many it was a massive help in dealing with the grief of loss. We have a service which simply consists of lighting a candle for someone who is ill, troubled or passed away. Some just say a name, some tell the story. It is moving. Many past members of groups, some who died decades ago are recalled. It is a very powerful emotion. I wonder how many of us bottle suchg things for years/

So far I've spoken of the upside. Now for the downside. For me I feel highly conflicted. I always come away having to deal with some very negative emotions. For me this time, for some reason, I was more troubled and in mental turmoil than ever. This was almost to the point that it ruined the trip. Having been many times, I know the routine, I love the expereince, but from the moment we arrived at the airport, to the moment we got back home, I saw a barrage of casual ignorance, intolerance and in some cases sheer selfishness of my fellow man towards the disabled members of our community. This time, in a way I've never felt before, this really got to me. There are the little things, such as the fact people always talk to the person pushing the chair, rather than the person in it. I should state that this is not an issue in our group, who "get it".

When we arrived at Stanstead, the first challenge is boarding disabled people onto the plane. This is always traumatic. Airlines take no account of how you load disabled people in design of aircraft. They make billions, but there is not design consideration at all of how how transfer a heavy adult into an aircraft seat. In short, this makes it a dangerous and stressful operation for both the disabled person and the people moving them. Just consider how you move an 18 stone dead weight into a seat, where you have to bend your back because of overhead lockers and where other seats, armrests have to be navigated. Even worse was the way the airline have abolished their policy where people in wheelchairs have to be loaded first. To transfer a quadraplegic person can take up to ten minutes. It involves 3-4 people to lift the person out of their chair, into an aisle chair. They then have to be hauled out of the aisle chair and into their seat, then slid along on a slider blanket to a middle seat.

This is hard enough, but when people are barging past and trying to get "the best seats" it is almost impossible. It was bad enough going out, coming back, I saw the most diabolical thing ever. A group, supposedly on pligrimmage with their parish arrived early. They boarded first. When we arrived, we had two people who needed "heavy lifts". This group refused to move from seats with moveable arms, and one took issue with me for "not arriving earlier" (we arrived in ample time). This particluar nasty individual said "we have disabled people too", failing to realise the difference between someone with a walking stick and a quadraplegic who needs manhandling into a seat. She then proceeded to get one of her group to video "what we were doing" on her mobile phone, to demonstrate how much of a pain in the arse we were with our disabled people, for their "well organised group".  I informed the said individual exactly what I thought of her, in a way that did not contain expletives. It gave a tad of reassurrance that members of her own group expressed disgust.

As a result of her intransigence, we had to lift a severely disabled person over an armrest. This may sound as nothing, but for her and for the helpers, an operation that is difficult had extra risks and was even more painful and distressing than it would be otherwise. I cannot tell you how disgusted I was. As I didn't want to inflame the situation, I stepped back, but I found it hard to contain myself as she berated another member of our group for "thinking HCPT own the plane". We simply asked for four people to change seats, so we could let two severly disabled people be moved on in safety. She said we "walked on like we owned the plane and simply were looking for the best seats for our group" I found this horrific. I've done this many times and have never seen another group put their own interests, before those of a disabled person before.

For some reason, this time I was far more acutely aware of this casual discrimintation. It is vile and in many ways it negated a lot of the good which a week of calm reflection had done. So can I sign off with a simple request. If you are travelling and you have a nice comfy seat, please give it up without needing to be asked if you see a disabled person or someone with greater need. Sure you may need to have a minor inconvenience, but I have seen first hand the issues disabled people face every day of their lives. Some cannot be avoided, but few cannot be negated with care and consideration.

Friday, 24 August 2012

Barnet Council latest - Lets bash the disabled in secret !

Barnet Council just gets worse and worse, when it comes to treatment of the disabled. I did my weekly scour of DPR's and saw one entitled "1780 - Disabled Parking Bay_Exempt". What is it all about?

Well the council website says - http://barnet.moderngov.co.uk/ieDecisionDetails.aspx?ID=4276
-----------------
Purpose:
This report details objections to the proposals to provide disabled parking bays. 
-----------------
And what are these objections? Well sadly the council has decided to keep these objections secret. So we are not allowed to know why the council has objections to disabled parking bays.

The reasons for keeping it secret

  • By Virtue of Paragraph 1
    Information relating to any individual.
    Condition:
    Information is exempt to the extent that, in all the circumstances of the case, the public interest in maintaining the exemption outweighs the public interest in disclosing the information.
    Information is not exempt if it relates to proposed development for which the local planning authority may grant itself planning permission pursuant to Regulation 3 of the Town & Country Planning General Regulations 1992(a).
  • By Virtue of Paragraph 2
    Information which is likely to reveal the identity of an individual.
    Condition:
    Information is exempt to the extent that, in all the circumstances of the case, the public interest in maintaining the exemption outweighs the public interest in disclosing the information.
    Information is not exempt if it relates to proposed development for which the local planning authority may grant itself planning permission pursuant to Regulation 3 of the Town & Country Planning General Regulations 1992(a).

So lets get this clear. Someone has objected to the creation of disabled parking bays. We are not allowed to know why they have objected. The reason is because it might reveal the identity of the person of the person objecting.

Now I was under the impression that Barnet Council had a policy of inclusion. If someone wants to object to disabled parking bays, fine. If they have a good reason to object. If the justifications are valid and the public interest is served by not creating disabled bays, then that is all well and good. 

The implication of this is that the objections were extremely specific and localised. The identity of the person was likely to be exposed by their complaining. Of course the council should not expose the identity of individuals, but should we have no idea at all of the nature of the issues? 

Presumably the disabled people affected by these objections are also kept in the dark. This means that they will not be able to state their case and work towards a compromised solution. My suspicion is that the objections are either one of two things

a) A next door neighbour has complained because their own parking rights are being compromised. Whilst this may be a valid concern, presumably a decent person would realise that a less mobile person has a need to park close to their house.

b) There is a political objection on ideological grounds to the creation of the spaces on the grounds that the complainant feels the disabled should not be given special access. 

Clearly in both of these cases, the complainant would not want anyone to know of their mean spiritedness.

In both cases, I personally would like to see their lack of community mindedness and lack of support for the less well abled members of society exposed. Unlike Prince Harry in the nod, I believe that this is in the public interest to be exposed. But then, there is no chance of that is there.

I will however be sending an FoI to ask for the location of these spaces, that may shed some light, mightent it?



Friday, 17 August 2012

UnbeF*ck*nglievable - Disabled people discriminated against by Paralympic ticketing arrangements !

I don't normally just post links to other sites with no commentary or anything. I'll make an exception this time, because this is totally unbelieveable. Is the country really run by complete twats? So it seems. Given all the good will generated by the Olympics, this is shocking !

http://www.change.org/en-GB/petitions/international-paralympic-committee-london2012-review-ticketing-policy-for-wheelchair-users

Thursday, 9 August 2012

Guest Blog - Do I deserve a holiday? by Wobbly Dave

I read the Barnet Eye blog about Rog T taking his cousin to Lourdes. I am pleased that Theresa got a holiday and good for Rog for taking her.

I would like a holiday as well, but I don't want to go to Lourdes. I don't believe in it and it really isn't my thing. Sadly, I can't afford it. I can't afford anything. It is a struggle just to make ends meet and a holiday is a luxury I'll be forgoe this year and probably next year and the year after. I'm depressed and I can't see anything getting any better. I'd like a week in Cornwall or Devon, just sitting on the sea front staring at the sea. I can't really do much else. I last did this two years ago when a friend paid to 'cheer me up' and took me.

All I do is sit in my flat and worry. I've read comments from people who say 'why should the taxpayer pay for people to lounge about on holiday?' Well if you'd sat in your flat for two years, with the odd hour out when it isn't raining to be pushed around the park, you'd know. If the highlight of your summer was a picnic and a beer in Sunny Hill Park (oh I forget, they've banned public drinking in Barnet) you'd realise why. I'm lucky, I have a few mates who are good to me. Some people don't even have that. I don't want their charity and I felt bad about going to Devon because it cost my mate money he couldn't afford either. Maybe my mates could save everyone a bit of bother and by me a ticket to Switzerland for one last holiday. At times I feel that this would save everyone a load of hassle. No, I'm not suicidal, but I get the feeling that some of our politicians think that should be the number one option on care packages for people like me.

And don't email me and say 'I'll pay for you to have a holiday' because I don't want charity. I just want something a bit like a life. I think that in a rich country that is something everyone should get occasionally.
--------------------------------------------------------------------------------------------------------------------------------
Wobbly Dave is a disabled Barnet resident who lives independently. He wishes me to state that this is not an appeal for donations. It is just him letting you know how he feels. Guest blogs are always welcome

Sunday, 5 August 2012

A lesson in life

So what did you spend the last week doing? Watching the Olympics? Enjoying the summer holidays? Maybe you went abroad for a week and were on holiday. Maybe you still are. We ALL need a break from the routine of our life, a change of scenery and the chance to unwind, recharge our batteries and have a break from our normal routine. There is nothing I like more than getting away with family and friends, sinking a few beers and catching up on my sleep. Most of all I like a few days of not blogging, it does get a little bit draining.

So you may wonder, what was I up to last week? Well yes, I was away. I asked for a few guest blogs and I've been inundated. So much so that I've a load for next week as well. I wanted to enjoy the Olympics, so I did ask for some, so I'll be restricting my blogging over the next week (unless something really needs addressing). But that wasn't what I wanted to talk about. I wanted to tell you about my holiday. I went away with someone very special who I love very dearly. She's a beautiful woman and she's not my wife ! You will (hopefully) be pleased to know that Mrs T gave the arrangement her full approval and I took two of my children and adopted another one for the week. Who was the woman? My cousin Theresa. Theresa is a few months younger than me. She lives in Barnet, in the care of Barnet Council and is a very special person. This picture is us enjoying a drink in the Riviera Sol Cafe.

My cousin has Downes syndrome and this is her holiday for the year. We went with HCPT (a charity) and stayed at Hosanna House in Bartres, which is three kilometres outside Lourdes. Our group consisted of 40 people, nine of whom needed some form of help and assistance. I give what talents I possess to the group. My role includes a fair bit of driving (not after I've drunk any alcohol, I hasten to add, as there is a zero tolerance for drink & driving - the picture was on my 'day off') of minibuses. I also use my small talents as a musician to try and entertain the group.

My cousin loves visiting Lourdes with the group. The group is inclusive, with everyone doing all activities together. It is impossible to describe what the experience we had was like. Although a pilgrimage to Lourdes has a strong religious theme, with our group this is based on practical help of every member of the team and reflection on ways we can be better people within our own system of belief, whatever that is. My 'adopted' son for the week is Jewish. He came because he wanted to help with the group (strapping lads who can lift and push wheelchairs are at a premium). He confessed to me that before travelling he had minor worries that people in the group would not necessarily accept him because of his faith. By the end of the first day, his worries were dispelled. It wouldn't surprise me if one day, he would make a very able rabbi (although I don't think that's on his plan right now).  He was rather relieved to find that we didn't say the rosary once during the week (although in the past we've had one or two who have felt their wasn't a big enough 'Catholic' element within our particular group). The overwhelming view in our group is that our expression of faith is more based on the practical and the sense of brother and sisterhood we develop during the week.

The reason that most of the helpers come is because they get a huge amount out of helping people, who otherwise wouldn't get a holiday to get out and about. Hosanna House is specially equipped for dealing with handicapped people. This means that there are hoists to lift people, nurses and doctors within the group and everywhere is wheelchair accessable.

One of our group, Helen, who has spent her life in a wheelchair spent an hour with the CEO of the HCPT trust explaining why the rooms are not fit for purpose. It amazes me that resources such as Helen are never usually consulted. The practical things such as ample room for helpers to get someone on  a toilet, push button door openers, rooms laid out to allow hoist access. I asked Helen why she likes this group as she's not particularly religious and she explained that most activities for the handicapped involve activities like basket weaving and being patronised. That doesn't happen with our group.

I have been going with the group most years since 2001. I used to take my disabled mum. When she passed away in 2008, I started taking Theresa. One thing which has become clear is that for many of the people within the group, the cuts imposed by the coalition are starting to bite. It also appears that less people generally are going away due to precious money being needed for day to day living. As I said, we all need a break. For people with disabilities, living in hostels or care homes, this is especially necessary. It is easier for disabled members of society who belong to faith groups to go on holiday. The Catholic church, for all it's faults, does look after people and most churches have appeals to send people to Lourdes, which are well sponsored. It disturbs me greatly that people of different or no faith, who don't have such a support network, are in effect financially excluded, because they don't have a machine to raise money for their holiday. HCPT do not discriminate against people who are not Catholic in who goes and who gets financial assistance. Having said that there are many people who our trip would not be their cup of tea, so many will completely miss out.

I go to Lourdes with our group for many reasons. The sheer joy which I saw on Theresa's face for much of the week was reason enough. We are the same age and were born six months apart in the same bit of Barnet. Probably 99.999% of our gene's (being cousins) are the same. Sadly the .0001% which gave her Downes syndrome, has meant we have had very different lives. We as we walked down the road or sat in bars that .0001% defined how we are treated and regarded.

Perhaps the saddest irony of our week in Lourdes is that in 1944, Lourdes was under Nazi occupation. This shrine where millions of sick and disabled people have visited was controlled by a monstrous regime who's policy towards people such as my cousin was one of instant death. They would have considered Theresa to be a worthless life, one with no purpose and they would have executed her. All of the joy she brings to the world would be lost.

As far as I'm concerned, anyone who discriminates against my cousin, because of that .0001% genetic difference is as much a Nazi as those evil bastards who sponsored a state execution of her ilk. Once you  start walking down the road to saying "These people" and reducing their status as human beings you are on the rocky road back to gas chambers. The disabled were the first victims of the Nazi repression.

I look at the arrogant, smug policies of the rotund politicians, some of whom in Barnet live in flats provided by charities and I despair. I  often wonder just how you can get through to people who really don't give a shit about their fellow man.  What especially disturbs me is how David Cameron, who had a disabled son, can preside over cuts which so disadvantage my friends who I travelled with? I genuinely thought that his experiences would make him a different kind of Tory. The stories I've heard of the effects of cuts in the last week have convinced me that Cameron is perhaps even more callous and heartless than those who have not had such a lesson in life. It had never really occurred to me before, but it is rather clear that some of us can attend a lesson in life and totally ignore it.

One final thing I must say. When I get back, a few people usually say to me 'Oh, you are so marvellous taking your cousin away'. Not a bit of it. I had a complete blast all week. It was great.

Have a great Sunday. I'm now off to open a beer and watch the Olympics !

Tuesday, 10 April 2012

I get by with a little help from my friends

Rog T teaching Aaron Silver to play the guitar
What would you do if I sang out of tune, would you stand up and walk out on me?

So starts the Beatles song, I get by with a little help from my friends. One of my friends posted this picture of me on facebook, teaching a dear friend of mine, who passed away recently the guitar. We were rehearsing a number for a show. With my awful singing voice, I can pretty much guarantee that I sung out of tune, but all my friends stayed.

It reminded me of the comment Councillor Brian Coleman made last year, in an open council meeting, when he queried why the council should have to pick up the tab for "these people" in response to the cost of providing transport for the disabled. Bad enough. to say, but when you consider that Brian Coleman had over £3,000 worth of travel expenses paid by the public purse in the last year, it is simply appalling (check this - http://www.london-fire.gov.uk/Brian_Coleman_2011_2012.asp).

A couple of times in my life I've had pretty serious medical conditions. I nearly died in 1984 when I had a stomach bleed. I was in hospital for six weeks and I was pretty much as low as it was possible to get. Fortunately for me my parents visited every day, my friends visited every day and I came to realise that people were on my side. The constant stream of books, magazines, fruit & vegetables they brought (it is a tradition amongst my circle of friends that we always bring an aubergene for mates who are sick), raised my spirits. As Lennon & McCartney wrote "I'll get by with a little help from my friends".

Which brings us back to Colemans attack. I ask myself "What should we do in the face of such an attack on the rights of our friends and family?". Well this May affords us that opportunity. Brian Coleman is up for re-election to the GLA. Along with his £53,000 salary, he gets his travel expense account to dinners all around Country. He also gets £26,000 a year for the bolt on job of chair of the London Fire and Emergency services authority.

If you think that he is doing a marvellous job and think he's well worth the £79,000  + expenses he gets for these two part time jobbies, then he's your man. If like me, you think that someone who has no regard and consideration for the disabled and the infirm and is prepared to insult them in  a Council meeting, is totally inappropriate, then make sure you get out and vote for someone else. The person most likely to beat Coleman in the GLA seat of Barnet and Camden is Labour candidate Andrew Dismore. There is also a fine Lib Dem Candidate who is a very decent guy called Chris Richards. This may be an alternative for people who support the coalition and don't want to vote for Coleman. The Green candidate is A.M. Poppy who is an active local campaigner and again a very decent candidate. For those Tory voters who want a distinctively right of centre alternative we have Michael Corby for UKIP. I must confess I know nothing of Corby, but I can state categorically that Andrew Dismore, Chris Richards and A.M. Poppy are candidates who would never dream of attacking the mobility rights of the disabled.

Not all of my friends who are disabled or infirm can stand up bullies like Brian Coleman. Not all are eloquent or confident enough to put him in his place (although some most certainly are). For those that can't, it falls on us, their friends to defend their rights and stand up for them. In a democracy, the best way to stand up to a bullying politician is via the ballot box. Just to dispel one myth, which Coleman and crew are peddling to loyal Conservative voters. At the election you get three ballot papers. One for the Mayor, One for Coleman and one for the Party list candidates. If you want a Tory mayor and Tory representation, vote Conservative for Mayor and for the list. If you don't vote for Brian Coleman as GLA rep it will have no effect on Boris or the lists candidate. I believe it is vital for the local Conservative Party to turn over a fresh page and let the decent Conservatives get their say.

When I started writing this blog, I tended to view all of our local Conservative Councillors in the same light. This is a highly simplistic view and it is wrong. Of all of the councillors in Barnet, the very best, kindest and most decent is a Conservative called Kate Salinger. She will be the next Deputy Mayor. If she stood in Mill Hill, I would break the rule of a lifetime and vote for her, because I believe that decency in politics is something which is the first consideration. She has courage and principles and is prepared to make sacrifices for them. Kate was the only Conservative to not vote for huge increases in Councillor allowances. She got publicly humiliated for her trouble by the rest of the group. She was the person who got the ban on residents using the toilet at Friern Library lifted during the occupation.

At the next Council election, if she stands, this blog will urge all voters to give her their vote, regardless of party loyalty, to send a message to the rest of her colleagues that good behaviour is recognised. I am asking all decent conservative voters in Barnet and Camden to do the same. Withhold your vote for Brian Coleman on the 3rd May. If you do, you will end up with a far better Conservative party, because the rejection of his values will send a message they cannot ignore.

Sunday, 13 November 2011

Updated *** Guest Blog - Linda Edwards Family Carer - A Barnet Council Care Horror Story

**** Updated Sunday 13/11/2011 ****
Guest Blog by Linda Edwards (Family Carer),
As a family carer in Barnet, I should like to thank the Learning Disability Social Work Review Team Manager for re-investigating a Complaint I made about an abusive incident towards my daughter, who has learning disabilities and autism, and myself.

On 19th April 2011 at 4.30pm, my daughter and her Support Worker arrived at my office whilst I was in a meeting.  They were both distressed and her Support Worker explained that the Senior Care Manager from the Supported Living Service Provider supporting my daughter, which had been commissioned by London Borough of Barnet (LBB) Adult Social Care and Health, had refused to provide the train fare for my daughter and her support staff to visit her father.  It was 4.30pm and my daughter was due to leave at 8.30am the following morning.   The Support Worker explained that she didn’t know what to do as for the past three years; they had been providing the train fare for my daughter’s visits.

I too, didn’t know what to do and telephoned the Senior Care Manager to find out why he had changed this policy with no notice.  He began screaming and shouting and instructing me to stop my work and sort out the mess (that he had created).  His screaming at me caused further distress to my daughter, her Support Worker and to myself.  I felt upset that my work colleagues had to hear this man shouting at me, and that my daughter was by now extremely distressed. 

The following morning I was still shocked and described this unprofessional incident to my daughter’s Social Worker who advised that she would inform the Learning Disability Social Work Review Team Manager.  After I submitted a complaint he met with the Service Provider’s CEO and with their Senior Care Manager who had been abusive.  They responded by telling lie upon lie about the incident and about me.  So, not only did the incident occur, but also the outcome of my complaint was based on lies.  I therefore was forced to challenge this outcome causing further distress to me, and which cost even more expense to the London Borough of Barnet. 

The Learning Disability Social Work Review Team Manager offered to reinvestigate my complaint with the additional issue of the lies that had been told to him by the Service Provider Management.  He met with me together with my ‘support friend’ and then he met with the witness from my office who had witnessed the incident.  He then met with the CEO and Senior Care Manager again. 

The outcome of his reinvestigation is that he is satisfied that the whole of my complaint should be substantiated.  I have asked for reassurance that no other vulnerable person in Barnet will receive the service from such a ‘bullying’ Service Provider, but so far this request has been refused with the comment “It is important to be proportionate with the comment in our response to complainants and to providers!"

My first experience of the Complaints process in Barnet was very different.  In March 2008 I made a formal complaint to Barnet Social Care and Health which included issues by the same Service Provider who had demonstrated that they had no specialist understanding of working with people on the Autistic Spectrum or working towards goals and outcomes.  After six months, I asked them for information about their goals for my daughter, and the same Senior Care Manager who screamed at me on 19th April 2011 became rude and abusive screaming “We are still getting to know her.  We can’t perform miracles.  You must be patient”.  In spite of three senior LBB Adult Service Managers at the meeting, including the Manager of the Adult Social Work Team who was in the chair, no action was taken.  Had the Chairperson not accepted this intimidating behaviour from a Senior Care Manager commissioned by LBB, or had the Director of Adult Social Care and Health removed them when I first reported such behaviour in October 2007, two weeks into commencement of their contract, they wouldn’t have been around to repeat the same behaviour four years later.   Them “Getting to know her” with no goals or outcomes lasted over four years, until August 2011!  By this time my daughter had become deskilled from their lack of autism expertise, inability to put into practise a person centred plan, work towards any goals and refusal to work with me in partnership.

On 4th July 2008, in response to my complaint, on behalf of LBB Adult Social Services, the Director of Adult Social Care and Health refused to remove the ‘bullying’ Service Provider, basing her report on their lies and assumptions from the Manager of the Adult Social Work Team who had chaired the meeting when they had screamed “We are still getting to know her!”  With further intimidation, she then suspended the complaint and I could only get the complaint reconvened after many months, having met with Andrew Dismore (then MP) and securing the services of a specialist solicitor. 

Intimidation, lies, incompetence, bad practice and exclusion by Senior LBB Managers have been cause for me to make other complaints and resulted in me becoming unwell, being supported by my doctor and often unable to work.  This culture is totally in contrast to the Governments Carers Strategy, from which LBB have created the Barnet Carers Strategy 2009-2012.  It is very clear what this and the previous Government has wanted for carers:  “Staff that work in health and social care should respect carers.  Staff should work together with carers in looking after their family member.”

Early in 2011, I wrote to the Director of Adult Social Care and Health at the LBB a few times to ask her to meet with me so that I can describe the effects on my daughter and on myself as a carer, of her decision in July 2008 to keep the ‘bullying’ Service Provider based on lies, assumptions, incompetence, lack of experience and a lack of monitoring, but so far she has ignored my request. 

I sincerely thank the Learning Disability Social Work Review Team Manger who has reinvestigated my complaint 19th April 2011.  Whilst my daughter cannot regain the wasted past four years, I only wish that this Manager had responded to my complaint in 2008 rather than the Director of Adult Social Care and Health who insisted that the London Borough of Barnet would continue to pay for such an inappropriate and shoddy service for my vulnerable daughter.

In his first response to my complaint 19th April 2011 the Learning Disability Social Work Review Team Manager said “I can only point out that this seems to be part of the poor communication between you and Hillgreen Care Ltd and that the sooner this situation is resolved, then the better it will be for (my daughter) and for you.”  Why then, did the Director of Adult Social Care and Health continue commissioning this bullying Service Provider and poor value contract since October 2007?

Her decision was nothing to do with the current funding issues for vulnerable people but based on listening to and representing unfounded lies and disregarding me as a carer. The London Borough of Barnet could have commissioned a good value for money service for my daughter, as there are some excellent Service Providers in Barnet who strive to offer the quality of service that our vulnerable family members need and deserve.  Instead, she chose to have the final word!

What other profession would tolerate such abusive, lying behaviour and still retain the same Service Provider to repeat such behaviour?  Only the “Care Industry!”

Wouldn’t it be reassuring for all vulnerable people, their family carers and the caring rate-paying Barnet residents, if the London Borough of Barnet refused to continue commissioning such inappropriate Service Providers?
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Update - 13/11/2011 Linda added the following
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I do hope that LBBarnet are monitoring my guest blog and all related contributions.
On behalf of family carers, I only wish that I had shared my stories earlier.  The fear of 'coming out' was that my vulnerable daughter would have been victimised.  I and others are monitoring this very, very closely and I promise that any whiff of victimisation will be disclosed.
It is a pity the LBBarnet did not monitor the shoddy service they provided and the cowboy organisation they commissioned since February 2007.
They would have saved considerable money for the rate payers of Barnet. 
Linda edwards
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Linda Edwards is a family carer.  Guest blogs are always welcome at the Barnet Eye. Please email me via the link in my profile

Thursday, 28 October 2010

To many a bureacrat or Tory MP this is just a cost saving - to me it's a crime

Got this email, from a friend of mine who is a quadraplegic who lives in a care home. Her life is difficult enough as it is. I really think a society who kicks people like Katy is a sick society not a big society. Here's her email to me. I really can't tell you how upset this makes me. My message to all Conservative and Lib Dem MP's - think again, this is cruel and heartless. Katy is disabled - not stupid or a criminal, she has a right to get out and about. To rob her of this is inhuman.  She ain't stupid and she doesn't deserve to suffer because a bunch of bankers wrecked the economy.
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Hi Everyone, the govenment are planning on taking away mine and other people's mobility allowance away from us because they are cutting money back, this is what my Mum wrote,

The Government has announced far-reaching cuts that will affect every disabled person in Britain. There is no doubt this is a real backwards step for equality and risks pushing many disabled people deep into poverty.
I have already written to my local MP about the issue and called on them to do their bit in Parliament on my behalf to defend the rights of disabled people and their families.

I’d be really grateful if you would do the same – it’s really easy and will only take a few moments if you follow this link:
http://e-activist.com/ea-campaign/clientcampaign.do?ea.client.id=1677&ea.campaign.id=8183
It would really help if you fill in the form please and send this onto as many people as you can, thanks xxxxxxx