My adult daughter has a learning disability and autism. Given the appropriate support and care, she is fun, funny and feisty! With support that is oppressive, controlling, unstructured and lazy, she becomes withdrawn and unable to cope with her daily life.
Which type of support would you choose for your vulnerable, disabled child? We all know the response………….. Or do we? The people who commission service providers and provide support for vulnerable people should have the same good intention that we would have for our vulnerable family member. Sadly, I will demonstrate here that this has not been the case within the London Borough of Barnet Adult Social Care and Health (adult social services). From their past performance over many years, it is clear that they not only ignore the needs of vulnerable people, but doggedly refuse to listen to experts such as the National Autistic Society and carers.
In fact, not only has their behaviour been unlawful, but they have been the main contributor to my daughter’s lack of independence, limited emotional development, her repeated anxiety and me having to regularly campaign for my daughter’s needs, often having to bring in her solicitor and the cause of me becoming unwell on many occasions.
They can never give my daughter back the many years they confined her to an institutional regime where she was made to be compliant and regressed or give me back my good health!
My daughter has been a service user of LB Barnet adult social services for many years. She has been living in a supported living-housing scheme, with support workers during the day and night. They were supposed to enable her to be part of the community and become more independent. In 2007, in spite of knowing my daughter needed 24 hour support, the Director of LBB adult social services offered her ‘no choice’ but a one bedroom flat with ‘no choice’ but for the staff to have to sleep in her lounge.
Disregarding the National Autistic Assessment Recommendations for consistency, reliability and structure, and my pleas not to use agency staff, unreliable and inconsistent agency staff were commissioned for the next 8 months. My daughter became depressed, frustrated and angry because the staff were unreliable, dismissive of her needs and often late in arriving, regularly leaving her waiting for over an hour and often not arriving to work with her resulting in her distress, me having to telephone the duty social worker and making me late for work, until someone eventually arrived. For the past 4 years LBB adult social services commissioned a private agency.
Some relevant background about social care…Each government places great emphasis on ‘choice’ and ‘independence’ for and ‘respect’ and ‘dignity’ towards vulnerable people. LBBarnet adult social services endorse this in their many glossy brochures and verbally. However, in our experience, very little ‘choice’ has been intended or has been evident and thus they have prevented my daughter from gaining the ‘independence’ or having the ‘choice’ to which she was entitled.
Indeed, our experience has been far worse than LBB adult social services simply commissioning an inappropriate contract to a service provider that bullied, lied and was responsible for their client’s regression! What is even more despicable is that despite the many, many occasions I alerted the Director of LBB adult social services, the Manager of the Social Work team and the Services Manager for learning disabilities that the service is unacceptable and gave substantial evidence, they continued to disregard all the facts and my pleas and allowed this private company to continue to receive high income for providing nothing more than an adult ‘sitting’ service for four years!
The conclusion from this disregard and what became evident after I made a formal complaint in March 2008 is that the culture and values of LBB Adult Social Care and Health (adult social services) are spiritually and morally corrupt. This is because the culture demands collusion, is based on conspiracy and generates fear.Some background about people on the autistic spectrum…“People with autism or Asperger syndrome may appear to behave unusually. There will generally be a reason for this: it can be an attempt to communicate, or a way of coping with a particular situation.” National Autistic Society.
Sudden changes to the routine of anyone on the autistic spectrum can be detrimental to their emotional well-being, mental and physical health and ability to manage their daily life. People on the autistic spectrum can make amazing life changes if given the appropriate support and encouragement before and during change. Change has to be well planned and developed in partnership with everyone who is significant to the autistic person. Consistency and cooperation is crucial and all decisions need to be made together with the person at the centre and with his/her family. Anything less will undoubtedly be failure for the vulnerable person, affecting his confidence, mental health and doom them to live a life controlled by others.
Collusion and conspiracy are the ingredients of how abuse festers and becomes part of the malignant culture of the ‘care industry’. Below is an example of a four month period (June – November 2011) of how this is endemic within LBBarnet adult social services, spiralling down from Director and senior management.
The new service provider refused to provide night sleep-in support for my daughter because it is “not good practice for staff to be sleeping in the lounge in a one bedroom flat!” Whilst well-respected and reputable service providers consider this bad practice, why did the Director of Adult Social Services allow this practice to begin in 2007 and continue until 2011?
In June 2011, my daughter’s support worker informed me “when the new service provider takes over, LB Barnet adult social services would remove my daughter’s night support.” My daughter has received this support since she has been living on her own and has never slept without staff support. Making such a sudden change without preparation would very likely induce anxiety, distress and depression and without consulting the person and her family carer contradicts all the futile words from LBB Adult Social Care and Health about ‘choice’, ‘independence’, ‘respect’ and ‘dignity’.
At a meeting held on 13th June 2011 at the LBB Day Centre specialising in working with people on the autistic spectrum where my daughter attends, I asked my daughter’s social worker to confirm that night support would not be removed until my daughter had demonstrated that she was ready for this extreme change. Again, the social worker had no hesitation confirming this and the minutes reiterate her promise.
This should have been the end of the story……………… Sadly, the behaviour of senior LBB managers, now led to yet another saga of victimisation, collusion, intimidation and disregarding the social worker who knows my daughter well and whom my daughter trusts.
- I passed this disturbing information that (“when the new service provider takes over, LBB adult social services would remove my daughter’s night support”) to my daughter’s solicitor, and following her intervention, on 11th July (whilst she was abroad), my daughter’s social worker sent the following email to the solicitor: “I can confirm that only when (my daughter) is ready to be without support at night, will this be withdrawn and there is not any timed deadline on this. The plan will indeed be to work pro-actively with (my daughter) to enable her to gain the skills to be safe in her flat…” So far so good until………..
- On Wednesday 3rd August I was informed that my daughter had refused to leave her flat to attend the day centre that day and the previous day. Throughout that week she continued to refuse to leave her hot flat and lay on the couch all day. This was completely out of character for my fun-loving and very sociable daughter, who thrives when she is actively involved in her day centre’s routine of swimming, gym and being with people she knows.
- On the Friday afternoon of that week (5th August), we visited her elderly grandparents (Grandpa 93 and Grandma 86). They were disturbed to see how their beloved granddaughter’s behaviour was unusually disruptive, argumentative and rigid. These are all symptoms of major sudden changes having been made to someone on the autistic spectrum. For anyone who knows my daughter these are certainly clear indications that someone has mistreated her. At this stage, I had no idea what had caused my daughter to make her feel so irritable and be so argumentative.
However, on Monday 8th August at 6pm, at a meeting with the manager of the LBB In-House supported living service, whose line manager is the LBB Services Manager, I was to find out what had caused my daughter so much distress:
· He informed me that my daughter’s “night support service had been withdrawn the previous week beginning 1st August” (at the precise time that my daughter refused to leave her flat!) He also said that his manager (LBB Services Manager for learning disabilities) had not intended to authorise night support once the previous private agency had left.
· I left this meeting in a state of shock! Whilst the social worker had promised both my daughter’s solicitor and me that the night support would remain in place, my daughter had been traumatised the previous week because they had already removed the night support without the crucial preparation!
· I returned home and telephoned my daughter’s solicitor. Linking my daughter’s disturbed behaviour the previous week with the sudden withdrawal of night support and knowing the contempt of adult social services management towards me, I decided I would no longer play the game on their terms, as being reasonable had allowed LBB adult social services to ignore my daughter’s distress so many times in the past. Without a difference in behaviour from me, they would continue to ignore her needs in the future!
· I returned to the block of flats where my daughter lives and explained to her that I now understand why she had been so upset. I told her that I spoke with her solicitor and that I would be sleeping downstairs in the common lounge/kitchen on the two seater settee.
· I informed the LBB In-House Supported Living manager that I would be sleeping there EVERY night until they resumed my daughter’s night support. I asked him to inform LBB adult social services management “If I have to continue sleeping there, I will invite my family and friends to spend the evening with me and will bring in my own meals. I will also be inviting the local paper to see how LBB do not keep their promises to vulnerable clients (with such disregard and disrespect) and how they treat their family carers (with such disrespect and contempt).”
On Tuesday 9th August, after an uncomfortable night’s sleep, I attended a meeting with the new service provider to discuss goals and aims for my daughter, only to learn when I arrived, that a new social worker had been sent by LBB adult social services management. My ‘support friend’ and I were surprised that a social worker who had never met my daughter or me should be instructed to attend this meeting with the new service provider. This clearly meant that the agenda for the meeting for my daughter had changed too but no one bothered to inform or consult with me beforehand!
What then happened was that the collusion and collaboration of the two LBB social services day centre manager and social worker unfolded in front of my eyes:
· The social worker informed me that we are here to discuss the night support and informed me that my daughter didn’t need night support any more. I replied that this meeting is with the new service provider and the agenda is to discuss my daughter’s goals. I showed everyone at the meeting, including the LBB day centre manager the previous minutes and email from my daughter’s social worker confirming that LBB adult social services would continue to provide night support service to my daughter. She and the day centre manager dismissed this as “that was then and this is now.” I responded that the minutes of13th June 2011 and the email sent to my daughter’s solicitor dated 11th July 2011 stated that my daughter’s night support would not be withdrawn. Also, that my daughter has not gained the skills she needs to feel confident and safe in less than three weeks since the commitment from her social worker, especially with staff who don’t understand her needs.
· I then asked the social worker how she had come to this decision without discussing anything with me. The LBB day service manager responded “We had an assessment.” The social worker then added, “It was a re-assessment.” I wasn’t sure who was pressing whose buttons but it was clear they were both colluding with the LBB senior manager who had withdrawn this service.
· I then asked who was a part of the re-assessment and the day centre manager replied that everyone had been involved in it including herself. I replied that they could not have a re-assessment without me and without my daughter’s social worker. The day centre manager replied, “it was felt it wasn’t necessary to include you” (me).
· I then asked who had discussed the matter with my daughter and silence fell upon the room! Discussing or considering the vulnerable person for whom decisions are made, is usually the ingredient that LBB adult social service management mostly disregard.
This LBB social worker had ignored my daughter’s social workers recommendations and agreement, which was based on her knowledge of my daughter. The LBB autistic day centre manager ignored her four-year knowledge of my daughter and her autistic needs and the senior LBB manager had ignored common sense when she withdrew this service.
When I suggested to the manager of the day centre that she was betraying my daughter and the people she is working for, she became defensive. Why did she deny that my daughters’ out of character behaviour of locking herself away in her flat the previous week was due to the sudden withdrawal of night support? Being an ‘expert’ in working with people on the autistic spectrum, she ignored the evidence so as to collude with her colleague and line manager.
The moral and spiritually corrupt culture that pervades LBB adult social care is fed by collusion and conspiracy cascading down from senior management.
· After an hour and half of pleading with these two members of the ‘conspiracy club’, I telephoned my daughter’s solicitor. She calmly informed the social worker that “LBB have behaved unlawfully in making a unilateral decision to change the service without a reassessment that included the family carer.” The social workers response was “that’s your opinion.” My ‘support friend’ and I looked at each other in disbelief and I commented to him “Since when does a social worker know more about the law than a specialist solicitor!”
· The solicitor replied that unless (my daughter’s) night support was resumed immediately, she would not waste time on the usual complaints protocol but would be immediately preparing for an urgent Judicial Review!
· The social worker left the room to discuss this with the manager who had withdrawn the night support service and in a short while she returned confirming that the LBB Services Manager for learning disabilities agreed that this service would be resumed immediately!
After many years of broken promises and evidence that LBB adult social services don’t care about the appropriate service for my daughter, they have demonstrated they cannot be trusted. Over the next few weeks, I checked on them regularly by visiting my daughter’s flat at night to ensure the staff were indeed sleeping in her flat.
· Observing my daughter carefully to see how she might heal from the damage they had caused, she continually asked for the previous support worker who slept in her flat for four nights in the week prior to the hand over. My daughter was communicating clearly that whilst she needed the night support in her flat, she wanted to have the same support worker rather than a stranger in her flat each night. She begun to share with a few people she trusted that she needed more continuity. Together we enabled her to send a letter to her social worker.
At a meeting on Friday 9th September with my daughter’s solicitor, the new Head of Learning Disabilities integrated Services apologised on behalf of LBB that this had happened. Thank you!
On Wednesday 12th October, my daughter’s social worker met and asked her about the night support she felt she needed. When asked if she would like to sleep on her own at night, my daughter responded “No, in case of emergencies.” She also made it very clear to her social worker that she wanted her own staff (as before this ‘conspiracy’) and didn’t want strangers sleeping in her flat.
On Monday 14th November 2011, my daughter’s social worker confirmed that LBB have now approved Direct Payments so that my daughter can recruit her own night support staff. Thank you.
The behaviour of LBB adult social care management towards my daughter in this and in many previous situations has been vindictive, nasty and lacking in consistency and common-sense.
This ‘corrupt and collusive conspiracy’ should raise serious questions as to the suitability of senior management of London Borough of Barnet Adult Social Care and Health who are continually making major decisions on behalf of vulnerable people that destroy and damage theirs and their families lives. Often these decisions are emotional irreversible and become costly both financially and emotionally and to outside service such as GP’s.
What I would like to know from the London Borough of Barnet is:
1. Why are so many vulnerable and disabled people disregarded, devalued, disrespected and treated with contempt by LBB Adult Social Care and Health management?
2. Why are the commitments verbally and in writing to respect and value people, including carers, disregarded in practice by LBB Adult Social Care and Health management?
3. How are family carers supposed to cope and manage in their caring role without a caring and expert solicitor; a caring and committed social worker and without the knowledge, tenacity and outside support that I have had to find?
4. Why is there a charade of consultations when what is happening in reality is an autocratic and dictatorial regime?
5. It seems that being forced to collude with the corrupt culture that the LBB Director and Services Manager instigate and preside over contaminates so many decent LBB staff. Who is going to ensure these Directors and senior LBB managers are made to be accountable to the disabled and disadvantaged residents of LBB, their family carers, YOU, the rate payer of Barnet who contribute towards their salaries and the government whose legislation and good practice guidelines LBB Social Care and Health senior management blatantly disregard?
6. Why is the current LBB adult social service culture and internal relationship between workers based on fear rather than respect, transparency, partnership and integrity?
7. In service to the community, humility is one of the most essential values. It needs to be introduced to the LB Barnet Adult Social Care and Health management. Are they going to genuinely listen to carers and learn from them with humility in the new initiative, named “Experts by Experience?” (For details 020 8359 4366 email: email@example.com. Or, are they going to continue to pretend?
8. The culture of Adult Social Care and Health demonstrates contempt, disregard and disrespect for the vulnerable people they are paid to work for. This must change so that the Directors and Senior Managers communicate truthfully, explore with integrity and act in partnership with vulnerable families. When is LBB Council going to make them accountable instead of continuing to promote the very people who instigate this corrupt culture, based on fear which encourages senior managers to continue with their victimisation of anyone who challenges and confronts their ever changing rules?
Linda Edwards is a carer in the London Borough of Barnet. Guest blogs are always welcome at the Barnet Eye. Send any articles via the email link in the sidebar