Friday, 12 April 2013

Guest blog - The Big Con of “being in the community” - The Latest Endemic National Institutional Practice - By Linda Edwards

By Linda Edwards

Previously I have written as a family carer of an adult daughter who is on the autistic spectrum and has learning disabilities. After many years battling with Kate Kennally, Director of LBB Adult Social Services to remove the bullying and lying 'cowboy' Service Provider that her department commissioned for my daughter’s service and made my daughter regress and depressed, after many years my daughter’s Solicitor secured a new service provider.

The new service provider are not perfect. Nor would they say they are. It is sufficient that they provide a decent support service, care about her wellbeing, are proactive about her safety and at the same time eager to maximise her ability, and are proactive with any problems.

In stark contrast to the 'bully boys' Kate Kennally’s department commissioned and she continually refused to remove from harming my daughter further, her new service provider plan around my daughter's individual needs, speak and listen to my daughter, and support her unique personality. They also ask my advice based on my knowledge and experience of my daughter, listen to my views about her needs and communicate with me when a problem arises. The previous ‘cowboy’ service provider and the LBB In House Supported Living Service blamed me and made me the problem when I challenged them for putting my daughter at risk. It is a great relief and encourages me to be honest and open when I feel something is not right for my disabled daughter or if she has communicated something to me that she wants me to represent for her, to feel able to communicate this with the Manager of her new service!  The previous service providers would always say “That is what Mrs Edwards wants!”  Her new service provider have the humility to acknowledge when they have made a mistake and because of their contrasting culture, gradually I am learning to trust again. It should be essential that disabled people’s needs are addressed and family carer’s knowledge is respected and valued.  It appears this is happening in many organisations but until the Local Authorities put this into practice as part of their culture, it is much a ‘hit and miss’ affair.

In spite of always trying to keep my role as family carer separate from my working role as Chief Executive of Larches Community ( Senior LBB Adult Social Care and Health Managers have victimised the Larches Community because of my dual role of battling for my daughter to have the service she needs.  The fact that it was necessary to complain about the LBB senior manager who was incompetent and acted unlawfully by blatantly disregarding me and not consulting with the family carer, resulted in this senior manager abusing her power and authority with how she behaved towards the Larches Community.   This same senior manager has been one of the architects for Your Choice Barnet who are now in a dire financial mess.  Shame on you LBB Adult Social Care!!

Kate Kennally excluded me from LBB Learning Disability Partnership Board because she didn't like me challenging LBB Adult Social Care and Health practice.  This was in spite of the interviewers at my interview speaking about my “vast knowledge and experience.” There are at least two other working groups I offered to join.  I was excluded from them both and I can only think this was because the senior managers had been included in my complaints of incompetence and colluding with bad practice.

This article will not make me 'Miss Popular' amongst colleagues in some other organisations but those like my daughter's service provider will know this is not about them. Nor will it make me any more 'Miss Popular' with Kate Kennally and the clones who protect and collude with the evil doctrine she leads. 

At the beginning of March, Larches Community opened a Farmers Market. The purpose is to build inclusive communities by encouraging the community to receive from and give to our learners. This can be in the form of money by purchasing craft items we have made in our Social Enterprise; exchange of goods by bringing in buttons and material for us to use to make our crafts, and developing communication and interaction by sharing a cup of tea, mutual interests and chat together.   

We have not seen a crowd of people come to the Community Market so last week when twenty potential customers arrived at the same time an excited stall holder called me from the office. 

Observing, I recognised the latest National Institutional practice that has become endemic under the guise of “being in the community”.  Ten disabled people were being escorted around the stalls by ten carers. A nice outing. So what is the problem, you may ask?

Senior Managers are misrepresenting “being in the community” with shoving disabled people into the streets like “herds of cattle" being bussed to shopping centres to walk round shops, supermarkets or any buildings that are located in a public place. The Organisations can tick another box to say their clients are “out and about in the community" and they convince themselves they are fulfilling their responsibilities.

When the group of twenty left I brought Larches Community co-workers and market traders together. Most stall holders came from LBB with a couple from Kent and Hillingdon. I asked what they had observed from the service users trip to our market. No response!

I described the following:
People were being led in a line of twos (although by an imaginary lead) like dogs being taken for a walk. I asked if anyone noticed any Interaction (positive or negative) between anyone. 
To be honest I wasn't sure where we were going with this discussion but my ‘gut’ said we have to expose this non-human culture.  Anyone who becomes consciously aware and still says or does nothing is colluding with The Big Con of “being in the community”  

I asked if anyone noticed any chatting between the people; any eye contact; anyone smelling the freshly made bread or freshly picked herbs, or anyone having any FUN?  Silence!

I explained that the staff will return to their Care Home or Day Centre and report to their managers that they had a good visit to a Farmers Market in the heart of the community.  Many of the staff have received redundancy or frightened they will in the near future and morale will be low.  Maybe they haven’t been trained and supported to understand any other purpose of the visits in to the community or what is important in how they communicate. Sadly, the most I can say the benefit was for the service users is that they had some exercise in walking to Larches House from the Broadwalk Shopping Centre Car Park and back again!

I explained that what parents are most concerned about is “What will happen to my disabled son or daughter when I die?”  I asked everyone to do something for disabled people whether they are our sons and daughters or whether their parents have already died. I asked them to:
1.    Raise their antennae and watch when they are in the street, in a coffee shop, chemist or shopping centre for this non-human interaction because it is happening all the time to people who are hungry for human contact and intimacy. People with learning disabilities thirst to feel and experience warmth, eye contact, acknowledgement, to communicate either in speech or another form of communication and to be heard and experience responsiveness. This is more or less than what we all need in our life but our disabled sons and daughters are being deprived of their basic human needs because of cost cutting and tick boxing.
2.    Send us their stories or better still send them to the media of what they have seen and
3.    Write to their Local Authority complaints department giving details of the issues and what they have observed.  Remember “Anyone who becomes consciously aware and still says or does nothing is colluding with The Big Con of “being in the community” 

Whilst society may be forgiven because of fear of "getting it wrong" or "not understanding someone" or "not knowing how to respond" Organisations set up to work for disabled people and  Local Authorities Commissioning such services both perpetuating this kind of non-human behaviour cannot be forgiven!  It doesn't take money to have the intention to want to communicate; to build Inclusive Communities; to be creative; spontaneous and adapt your usual methods of communication to engage with people whose way of communicating is different from ours.  What is unforgivable is that all around us are Organisations receiving payment for supporting and caring for disabled people in this non-human manner.  Worse still is Local Authorities who are receiving money from Central Government and paying their own Local Authority Trading Companies for this kind of shambolic pretence of providing services and “being in the community”.  Local Authorities are either not monitoring, not caring or being so immune to what is happening in reality to disabled people that they are authorising such practice.    

In the streets of Edgware, I frequently see LBB In House Supported Living staff accompanying someone with a disability and walking two paces ahead as if they are the Queen walking with a lesser royal behind.  Last weekend whilst having Chinese lunch with my daughter we met people from where she used to live (LBB).  Was it my imagination or reality but nobody appeared to speak or communicate with each other throughout their meal? 
Larches Community has supported meetings of The Space Group family carers who have been very unhappy about “Community Space folk that are currently dumped out in church halls” and “continue to fill the balance of their days, riding on public transport and wandering around shops.”

"It seems a monstrous dereliction of care to me to force people round shops aimlessly, with no purpose, and not provide safe, stimulating activities, that need not be expensive but simply require planning, and communication skills by carers. Mini buses of SPACE clients are bussed to large shopping Centres and walked round and round until they are exhausted.  There were more choices prior to the privatisation of the services, the dragging of clients around shops in all weathers has significantly grown since privatisation. Your Choice is a lie as no choice was given, and it does not offer the more choices promised it offers less choice, it is not only the business model that is a car crash it is the whole concept.” John Sullivan

Recently a group of disabled people from Community Space who are now based in a church hall in Finchley were seen at the Galleria in Hatfield “being dragged around shops to pass the time away.”  One lad who is very disabled was sitting on the floor in the middle of the store exhausted and very pale and looking unwell.  The care worker was alerted to his obvious distress and retorted “Yes he does look a bit pale.”  The next day this lad was taken ill. This could be your son or my daughter but what are we doing about this Big Con of “being in the community?”

On the recent Monday bank holiday, another disabled lady had to walk around Harrow shops because privately run dance classes where she would go to on a Monday were closed for 
By Linda Edwards,
Easter.  The following Wednesday she was forced to walk around Harrow shops because they could not go bowling when the schools are closed.  The elderly family carers report that “the result of these two days walking the stores was their daughter who has a back and a knee problem was in some discomfort and pain in both her back and her knee when she arrived home Wednesday afternoon.”  The same disabled lady was booked to attend the gym which because of her pain in her back and knee, agreed she would attend the gym to watch and not participate.  After travelling on public transport and in spite of her knee and back pain, she was taken for a walk around Burnt Oak shops. 

“These folk deserve better they like us are human beings with feelings who enjoy the comfort zone of their peers and community.  Sadly in many ways the community hub that is so vital to us all was snatched away from these folk without consideration or consultation and in my eyes that is unforgivable.” John Sullivan
Sadly John, this is the Big Con of “being in the community!”

Barnet Council created the Local Authority Trading Company “Your Choice Barnet” to provide social care for adults with learning and physical disabilities.  After only a year the company is in trouble and planning to reduce the quality of services, and Barnet Homes is preparing to pay a £1 million bail-out out of £2 million shortfall.(see John Sullivan's guest blog, and Open Letter, and John Burgess's concerns for further details).
Linda Edwards
Family Carer 
Guest blogs are always welcome at the Barnet Eye.

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