Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Thursday 22 April 2021

UPDATE Has Brent Council learnt nothing from the Grenfell Inquiry and are they putting their disabled residents in peril as a result?

Lawyers involved in the Grenfell Tower Inquiry into the 2017 fire which killed 72 people have described it “as a landmark act of discrimination against disabled and vulnerable people”.

The Royal Borough of Kensington and Chelsea Council knew about the conditions of Disabled people living in Grenfell Tower but refused to provide them with evacuation plans, and housed some on the upper floors with a ‘stay put’ fire policy, the Inquiry into the Tower fire has heard.

Source Disability Rights UK  

 

UPDATE - Today, the day after this article was published Brent Council leader Muhammed Butt has written to John Healy acknowledging his enquiry of April 21st and stating that it has been forwarded to the respective department who will look into the issue and make every effort to resolve it. He said the Council aimed to respond withing 10 working days.


Readers may recall several articles Wembley Matters has published about the plight of disabled pensioner John Healy who lives in a Brent Council block on the  South Kilburn Estate.

John wrote a personal blog on March 12th  about the issues he was facing and Brent Council made the following statement in response:

"Personal Emergency Evacuation Plans (PEEP) are essential for anyone who may need assistance in the unlikely event of being advised to leave a building because of fire. We're concerned that something seems to have gone wrong here and have contacted Mr Healy to put it right."

John Healy contacted the Council and the Council could not find the PEEP request he had made and asked him to resubmit. He resubmitted and has heard nothing further. John says that officers have stopped replying to his emails.

In their evidence LINK  to the Grenfell Inquiry Bindmans pointed out the failure of the Tenant Management Organisation (TMO) to assess residents' needs:

 Dr Lane finds no evidence that TMO assessed the needs of any vulnerable person in GT in the event of a fire3. This failure resulted in TMO not being appraised of the fire precautions required by RRO in order to protect residents, including vulnerable residents, and failing to advise LFB of the need to assist the vulnerable. The lack of appropriate precautions is reflected in the deaths: a quarter of the 67 child residents present on the night died and 41% of the 37 vulnerable adult residents died.These groups suffered higher death rates than any other category on the night. Yet TMO's spreadsheet emailed during the fire showed only 10 out of 225 residents listed with disabilities5

 Mr Healy is rightly concerned that Brent Council has also failed to adequately assess the needs of its vulnerable residents, putting them at considerable risk.  I would go further and say that they are repeating what Kensington and Chelsea did in ignoring the pleas of their tenants when they draw attention to deficiencies in safety precautions in their blocks. Brent Council brought council housing back in house instead of having the arms length organisation ,Brent Housing Partnership - Brent Housing has direct control and thus direct responsibility for the welbeing and safety of its tenants.

It even appears the Mr Healy is seen as a nuisance who can be ignored.  Today he wrote to his housing officer:

Good afternoon, you may be aware that the Grenfell Inquiry heard today from an officer of Kensington & Chelsea council, as he responded about why he failed to issue PEEPs to several disabled residents in the block, including many who tragically died on the night.

I myself have been asking for a PEEP since last September and I still have not been sent one.

I also need to see the evacuation policy for everyone at William Dunbar House.

And finally can you send me a copy of the latest Fire Risk Assesssment for William Dunbar House please?

Cllr Janice Long has submitted a generic  question to the Council  about PEEPs. according to Mr Healy, which gave him some hopes, but the Council has 14 days to reply, prolonging the uncertainty and anxiety.

John told Wembley Matters he had  contacted a senior officer who deals with Council policy:

 I asked him what did he mean when he said in a debate on Fire Safety in Brent's tower blocks:-

"In terms of people with special needs, we will try and relocate the residents if necessary".

The cabinet said they would review their position on retrofitting sprinklers in the 8 South Kilburn tower blocks (including William Dunbar House), once the result of the South Kilburn resident's ballot is known but they seem to have forgotten to have the review.

I have to remain in my block for several years without any sprinklers, even after the London Fire Brigade  said they could only say a high rise is safe, if they have sprinklers installed in them.

I also checked my most recent Fire Risk Assessment for my block---William Dunbar House over evacuation which says:-

"Physically disabled people should be relatively safe in their own abode should a fire occur elsewhere in the building".

Our rating is 'moderate' which says "in a serious fire there are llikely to be some deaths but not too many".

So if some will die in a serious fire, I have a feeling it is most likely to be me, or another disabled person living in my block.

Just to add, the Brent Housing officers who were dealing with me through email have stopped replying to me.  They have not responded to my Stage 1 complaint either, even though it has gone past their 20 days waiting time before they are supposed to respond.

 So this pensioner with very limited mobility and extreme deafness is left without a Personal Emergency Plan, that is required by law, on the 5th floor of a block without sprinklers or an alarm system that he can hear and with his request for relocation refused. On top of that his Stage 1 complaint made in order to get some sort of hearing has not been responded to within the required 5 days and a further 20 to find a solution. The complaint was made 38 days ago.

Is it any surprise that he feels desperate, ignored and sick with worry?

 

Friday 12 March 2021

UPDATED WITH COUNCIL STATEMENT: Disabled South Kilburn pensioner still has no PEEP despite applying to Brent Council 6 months ago


John Healy, a disabled pensioner on the South Kilburn Estate has been given the run-around by Brent Council in his attempts to get them to issue a Personal Emergency Evacuation Plan (PEEP) to safeguard his life in the event of a fire. He contacted me in desperation after getting nowehere with councillors, housing officers and his MP:

I am grateful for anything that you might be able to help me with, including contacting the council on my behalf.   I sent my completed PEEP to the council last September but they have not contacted me about it.  Since them my mobility has got much worse and I am now housebound.

I keep ringing them and emailing the council and also my Kilburn Ward councillors  but no one replies. I escalated it by contacting my MP but she has not replied either, although she did sent me an automated email saying she had received my email and would get back to me sometime.

Inside Housing had a story last Friday, on how several disabled people died trapped in their homes in Grenfell tower and I could be facing the same situation in my block as no one can ever predict when a fire may break out.

 

I offered John Healy a chance to tell his own story on Wembley Matters. Here it is:

GUEST POST BY JOHN HEALY

I am a 70 year old male, living on my own in a South Kilburn high-rise, with a mobility issue and a hearing impairment (in both ears) I am registered with Brent Council as a disabled person but unfortunately I also caught the Covid  back in early March 2020 which has worsened my mobility issues and at the end of Feb. 2021 my legs felt they like they had lead attached to them and the result was I was unable to walk at all. I had been asking the council for a PEEP (Personal Emergency Evacuation Plan) for over 6 months but they will not issue me with one.

 

I need a PEEP urgently in case my high-rise needs an emergency evacuation e.g a severe fire and I would need the assistance of someone to help me evacuate my flat but without having a PEEP no one will be aware of my situation. I assume there will be many more disabled people in Brent needing a PEEP which the council needs to respond to immediately, as it could be a matter of life and death.

 

 

Currently Parliament is set to make it a legal requirement (Ref: The Fire Safety Bill) for all councils in England to issue a PEEP to all disabled people living in high rises who need one.  They will use a 'traffic light system' that will identify the risk level of every disabled person living in a high rise flat e.g. red for people with mobility issues and green for people with hearing impairments.

 

Although I am not a leaseholder myself, I am a member of the disabled leaseholders group who have been campaigning to get the government to pay for the removal of dangerous cladding from their own high rises but some of them also need a PEEP,  I have submitted a question to the panel at next week's cladding meeting on Zoom (see WM post below for details) where I have asked the panel, "Why does Brent Council refuse to issue me with a PEEP?" and hopefully both my MP's might give me a response.  I have previously sent three emails to my MP but she has not replied yet. That is ok as I know she is very busy dealing with other serious issues all of the time.

 

It appears that my high -rise has even fewer Fire Prevention measures than were in situ at Grenfell e.g we do not even have any fire alarms that could alert all our residents if a fire was to break out and help them to evacuate more quickly.  The council have also said it would be a waste of money to install sprinklers in my high-rise, as it is due to be demolished in 2026/27 as part of the South Kilburn Regeneration programme.

 

At Larkanal in 2009 everyone who died were not disabled but were families with children and they were told to remain in their 4th floor flats and wait for the fire service to come & rescue them - they were burnt alive. Some people might not think being on the 5th floor is high enough to be a threat but the Grenfell fire started on the 4th floor. But for me it is about evacuating myself down our only fire escape, unable to see in the smoke and with everyone non-disabled in a hurry to get out and I might be in their way due to my slow pace.

 

Several disabled people at Grenfell had this experience for real and they described being knocked over by others trying to escape

 

When I first moved into the block in 1993 the council had a policy saying no one with a disability should be housed above the 4th floor but they said 4th  or 5th - what's the difference?  But it could be difficult to escape if you cannot walk even if you are only one floor up.

 

Brent Council has not implemented any of the Fire Safety Risks – Means of Escape for Disabled People (2007) LINK  measures in my tower block and I assume in the other 37 high rises in Brent.  e.g. my block does not even have a Fire Alarm.

 

Finally, The London Fire Brigade believes that everyone will be safe if sprinklers are installed in every high rise across London and that every council should install them without delay.  But it seems the council do not consider that my life and my fellow residents are worth saving, as they have decided we are expendable.  But if the council were to issue me with a PEEP, at least it would increase my chances of surviving, unlike all the disabled residents who tragically lost their lives at The Grenfell Tower in 2017…

 

Disability Rights UK has  insisted that disabled people in high rise flats should have a Personal Emergency Evacuation Plan. LINK  

 

Time for some action.

 

Today (March 17th) Brent Council responded to Wembley Matters with the statement below. Kilburn ward councillors have not  yet  reacted to an offer to publish their response:

 

A Brent Council spokesperson said: "Personal Emergency Evacuation Plans (PEEP) are essential for anyone who may need assistance in the unlikely event of being advised to leave a building because of fire. We're concerned that something seems to have gone wrong here and have contacted Mr Healy to put it right.

"Last year, we proactively reached out to all tenants, asking anyone who needed assistance to complete a PEEP. We don't seem to have received a PEEP from Mr Healy and will be investigating what has gone wrong here, along with Mr Healy's comments about not being able to reach us.

"If any Brent Council tenant, who does not already have a PEEP, and would require assistance in a fire evacuation, we urge them to contact HousingManagement@brent.gov.uk or call 020 8937 1234."

Tuesday 29 January 2019

The Brent Council 'Cassie' safeguarding case revisited.

This story, which appears to have hit the press again, was first reported by Wembley Matters in October last year. I reprint it here as it provides a much fuller account and at the end Brent Council's response to the Review findings and recommendations,

A Safeguarding Adult Review published by Brent Council LINK raises serious issues about the service provided by the Council and bought-in providers to people with an autistic spectrum condition.
The case concerns ‘Cassie’ (not her real name) a Black woman in her mid-50s who has lived in services for people with learning disabilities and autism since she was a child. Information about Cassie was limited to her clinical classifications and records held by health and social care services, including the Independent Provider, the autism specialist residential home at which she has lived since 1990.
Cassie was found to be HIV positive in 2016 which triggered a safeguarding meeting. The Infectious Diseases Team confirmed that it was sexually transmitted at some point between 2007 and 2015 while Cassie was resident with the independent provider commissioned by Brent Council. It was confirmed that Cassie did not have the capacity to consent to having sexual relations and a police investigation was agreed. During March 2017 the Safeguarding Adults Board was informed that the police investigation had been closed. Cassie was moved to a different home that was managed by the same provider.
The report outlines the poor quality of Cassie’s provision:
It is remarkable that Cassie’s many years of residing in long stay hospitals and latterly, at the Independent Provider, reveal so little about her. Whatever the names of the hospitals she has lived in, observers and some former residents have commented on the bleak and unstimulating environments of large institutions. There were no opportunities for children with severe learning disabilities to learn functional skills, including basic communication skills, or to prepare for life beyond the institutions.
It is noteworthy that the single sign which Cassie was consistently encouraged to use was “Thank you.” 

Knowledge of Cassie is primarily based on clinical interpretation and classification and these do not help in deciphering the ways in which she engages with others or with objects. There is neither a simple nor consistent description of her. Yet support staffs’ understanding of Cassie determines how she spends her days. The challenges Cassie faces in figuring out the world are unfamiliar since so little is known of her developmental path. The records suggest only partial accounts of her behaviour or aspects of particular actions. How her interest in paper tearing is defined is critical.
During her adulthood, Cassie began to create scatterings of torn paper. The Independent Provider notes that she becomes distressed when she is required to pick up and put the pieces of paper in the bin. This prompts the question: Is this the only possible intervention? It is clear that Cassie can communicate intention. For example, she takes people to the kitchen when she is hungry and she gets her coat when she wants to go out. It is known too that she needs a lot of help in terms of her personal and intimate care. This does not preclude her having unique forms of communication, demonstrating awareness 
of others and desiring to belong and participate. For example, she enjoys her mother’s visits and she likes to sit with staff.

The records suggest that during the weeks prior to Cassie’s HIV diagnosis, her world experience appeared to be confined to her bedroom and the living room and, specifically, the sofa.
Cassie’s mother told the Review:
‘When Brent closed its day centres I was told, “We’ll make a programme for her so she can got out, meet people, walk around - we’ll put a programme together and include shopping and visiting you.” Nothing materialised...’I was told that one place Cassie could go to - the Independent Provider’s Day Centre was being “repaired.” She got a place there but it didn’t last long. I had a letter saying that Brent had cut the grant and she didn’t go back no more.  She’s bored. It was better when she went to the centre. Now they just sit in the living room with the music channel on the TV. There are only three of them and that’s what they all do.’
Naturally Cassie’s HIV diagnosis was devastating for her mother.  The HR person at the provider told her that the incident must have happened at night: ‘This is all I know. This rape, which I can’t talk about or tell anyone about, this rape happened. Cassie had no control over her body and this man takes over her body. You can’t get them to take tests because of their human rights, What chance have you got. I asked the police if they could offer a reward. They said “No” because people tend to close ranks.’
The review states that the majority of the Independent Provider’s Risk Assessment date from the months of Cassie’s diagnosis. There are many gaps in the ‘monthy reports’ and other information: ‘The notes convey only biographical fragments, The monthly reports contain a lot of repetition and evidence of “cut and paste.” This renders problematic the claim that these will be subject to “trend analysis.”
 
General Practitioners who cared for Cassie said they were shocked when the Infectious Diseases Team made their diagnosis because Cassie is ‘so very vulnerable.’ As a patient she is sometimes compliant but there are a lot of barriers to investigating what is wrong. Cassie’s cooperation depended on how calm her carers were and this varied.
There is much more on the medical history in the report but significantly it is reported that Cassie did not benefit from annual reviews with none undertaken during 2008, 2011, 2013 and 2014.  She has contact with the Learning Disabilities Community Health Team for psychiatric and a brief period of physiotherapy support and is reviewed in outpatients every 6 months.
The report summarises the ‘best interests of the person’ provisions in the Mental Capacity Act (MCA) 2005:
·      Equal consideration and non-discrimination
·      Considering all relevant circumstances
·      Regaining capacity
·      Permitting and encouraging participation
·      Special consideration for life sustaining treatment
·      The person’s wishes and feelings, beliefs and values
·      The views of others
The report notes, ‘There is no reference to the MCA in relation to Cassie’s care and support. Although the Independent Provider cites ‘best interest meetings’ there are no documented examples  examples of any such meetings.’
 
Later it states, ‘Irrespective of the seriousness of Cassie’s HIV diagnosis, no individual or agency has undertaken to determine her best interest in relation for a achieving a consensual approach to decision making concerning invasive treatment or even essential treatment.’
In a telling passage the report says:
‘The absence of a credible life story is stark, that is one which goes beyond setting out Cassie’s likes, dislikes and challenging behaviour, for example. Without the account of Cassie’s mother and her GP’s descriptions of what they have earned from supporting her, Cassie’s life-long history of being supported by services is reduced  to a disheartening short list of home based activity. Although it is known that Cassie loves to walk and her impulse to get out is undiminished, at the provider’s centre this is given expression in her fast paced restlessness. Cassie’s life story is not known. That is to say, the relevant parts of her past and present have not been recorded. The services to which Cassie is known appear not to have any processes for eliciting stories about her and her family as a means of connecting her life to her present circumstances and the people who are significant.’
The report issues a number of challenges to Brent Council:
Since Brent’s commissioning did not ensure that the Independent Provider established the necessary conditions to support Cassie, this is an opportune time for Brent to initiate a fresh approach to the support of people with autism. What ‘autism specialism’ is Brent seeking? It cannot be credible that faith is invested in a service which advertises itself as specialist. Brent has a responsibility to identify and monitor the tasks required ti address Cassie’s considerable support needs and those of others with autism and learning disabilities, What arrangements are in place in Brent to provide support to the families of people with autism at times of transition and to ensure that workforce planning, training and retraining arrangements are effective? The test of such investment will be in the improvements they bring to the lives of people with autism and learning difficulties.
Concluding the review, Dr Margaret Ryan states that Cassie has been failed by services and that by exposing her to sexual abuse by a third party without appropriate care planning and risk assessment  was professionally negligent and possibly in breach of the duty of care: ‘The evidence suggests a possible breach of the right to respect for private and family life and potentially a breach of the right to protection from inhuman and degrading treatment.’
Dr Ryan goes on to express disappointment that the Independent Provider states that the organisation is unable to comment on the assertion that Cassie was infected as a result of sexual assault as they has ‘seen no evidence of this.’  The documentation does not support the assertion that Cassie was solely supported by women staff.
At the time of the report Cassie remained with the provider, albeit in different accommodation, and her mother is unhappy with the arrangement  and wants urgency in seeking an alternative placement. Dr Ryan states that, ‘thus far, there is no evidence of attentive external scrutiny of her post-diagnosis care plan. Since the documentation shared by the provider and service reviewer is limited it is possible that these are systemic matters.’
Dr Ryan suggest that Brent Council has to undertake a great deal of work concerning the use of the Mental Capacity Act 2005 and the Deprivation of Liberty Safeguards: ‘Cassie’s health is compromised and is vulnerable to deterioration. It is not clear what “practicable steps” were taken to support Cassie’s decision-making in advance of a determination of incapacity.’
The Review’s Recommendations:
1) Since there is cause for concern and uncertainty concerning the HIV status of the five residents at the care home, Brent requests the Court of Protection to give direction in this matter 

2) Cassie should be provided with additional interim support until she moves to another service. Such support should be informed by the principles an management of care as set out by NICE guidance

3) Brent’s Safeguarding Adults Board seeks reassurance that:
·      The Transforming Learning Disability Services’ initiative of the CCGs, permits and 
establishes with Brent’s Adult Social Care an ambitious path which promotes greater attention to individual support needs which credibly involves (i) self- advocates and (ii) engagement with the families of people with complex support needs, most particularly in ensuring that account is taken of people’s life stories and their future aspirations 

·      Future changes (that result in discontinuities of personnel and functions) in respect of reviewing and monitoring long-term placements must ensure that (i) people funded by public services are better off or at least not worse off, (ii)  http://www.lawcom.gov.uk/wp-content/uploads/2017/03/Mental_Capacity_Report_Summary.pdf (accessed on 6 July 2017)
 NICE (2012) Autism spectrum disorder in adults: diagnosis and management (CG142reviewing is annual and (iii) goals or “ends” for people receiving services are not displaced by undue attention to “means”
·      The Transforming Learning Disability Services’ initiative adopts a proactive and 
questioning approach to the scrutiny and oversight of all placements. Critical skills should be evidenced such as: collaborating with people with autism and their families; knowledge of effective care planning; knowledge of safeguarding and, specifically, how to record safeguarding concerns; identifying potential community collaborators; and because several medical conditions are significantly more prevalent among people with autism compared with people who do not have autism,ensuring that medical appointments are prioritised 

·      The operational competences and track records of specialist providers are known to service commissioners in term of the recorded outcomes realised for individual people with autism 

·      The Learning Disabilities Community Health Team and specialist providers can provide evidence that they are (i) instrumental in working with GPs in detecting health problems which would otherwise result in unnecessary suffering; (ii) make it possible for residents to develop health routines such as accessing health screening and health promotion activities; and (iii) are persistent and creative advocates for people’s improved health and health care – paying particular attention to the challenge of “diagnostic overshadowing” 

·      The Learning Disabilities Community Health Team assumes a lead role in promoting positive practice in the use of the Mental Capacity legislation 

·      The signs being taught to people with compromised communication skills include the sign for “No!” 

4) Brent’s Safeguarding Adults Board may wish to consider advising service commissioners that questions must be asked about the mechanisms in place to ensure the safety of people with limited articulacy, in particular those who are supported by male workers.
Brent Council in a statement to Wembley Matters said:
“All of the partners on the Safeguarding Adults Board, including the Council, have expressed our deep and sincere regret to both Cassie and her family.   We can confirm that Cassie is now safe and happy and is having all her health and care needs met. 
“As soon as the Council became aware of the situation the Safeguarding Adults Team took immediate action to ensure that Cassie was safe and receiving the support she needed, and further steps were taken to ensure no other person was at risk.  The matter was reported to the police, who undertook a full investigation. 
“Following these immediate actions, the Council asked the Safeguarding Adult Board to consider commissioning an independent Safeguarding Adult Review (SAR).    A SAR is a nationally recognised process, under the Care Act 2014.   The Board and the Independent Chair agreed this met the criteria for a SAR because there had been serious harm in a complex case which involved a wide range of statutory and voluntary agencies.  The purpose of a SAR is to ensure the independent consideration of the facts, and to use these facts to identify and promote effective learning across all agencies.  It is a key part of improving services in order to prevent serious harm occurring again.  The function of SARs is not to apportion blame or make judgements about negligence.
“As a result of the SAR, the Safeguarding Adults Board has a multi-agency action plan.  This will be monitored by the Board and the Board’s Independent Chair, who will ensure that the lessons have been learnt across all the agencies involved.   
“The Council has fully supported this process.  We have already delivered a range of actions to improve the support we provide to vulnerable adults in Brent, including setting up a team that specifically focuses on reviewing the quality of care and support for individuals in residential placements, and integrating the health and social care learning disability teams into a single team providing holistic support to adults with a learning disability. 
“Cassie continues to do well in her new home and we continue to ensure that she is getting the support that she needs.”
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Tuesday 6 September 2016

What employees say about working for Brent Council

A survey of Brent Council employees that will be reported to the Equalities Committee presents a mixed picture showing that although there are areas of strength there is still much to be done. Below I present the 'Headline' findings and those relating to employees with a disability. The latter is particularly concerning. The full report can be accessed at the end of the article and deserves close scrutiny

It will be discussed at the Equalities Committee on Monday 12th September, 6pm, at the Brent Civic Centre.



Figures in brackets are the Council average

Thursday 25 February 2016

Disabled children miss out on play opportunities - call for action





Last year Brent Council removed the funding from Stonebridge Adventure Playground and demolished it.  The playground had been the site of integrated play facilities for disabled and non-disabled children.

This report makes the case for play.

A report by the national deafblind charity, Sense, reveals the severe restrictions facing disabled children in accessing play. The report identifies failings at every level that result in disabled children missing out on play opportunities that are vital to their emotional, social and physical  development. A lack of attention by government, insufficient funding at a local level and negative attitudes towards disabled children and their families are all barriers highlighted in the report.

The report calls for urgent action to address these inequalities and to enable the Prime Minister to deliver on his recent call to improve the “life chances” of all children.
 

The report follows a three month public inquiry into the provision of play opportunities for disabled children aged 0-5 with multiple needs in England and Wales. Chaired by former Secretary of State for Education and Employment, Lord Blunkett, the inquiry was established in response to parents’ concern that they had fewer opportunities to access play services and settings than families with non-disabled children.

Chair of the Play Inquiry, Lord Blunkett, said:

We know that play is vitally important for children with multiple needs and their families, bringing a wide range of developmental and emotional benefits. However, our inquiry found that all too often the parents of children with multiple-needs point to barriers they face in accessing and enjoying play. It means that disabled children don’t have the same chance to form friendships, and parents are prevented from taking a break from caring. Both disabled children and their parents are excluded from their own communities.
 

I know that there is strong support across the political spectrum for addressing the findings of this report, and I look forward to working with colleagues from all parties to achieve real change for parents and families across the nation.
 Key findings from the report:

92% of parents felt that their child did not have the same opportunities to play as their non-disabled peers, and 81% of parents reported difficulties in accessing mainstream play groups and local play opportunities.

·         51% of children had been turned away from play settings by providers, failing to meet their legal duties under the Equality Act 2010.

·         95% of parents said that parents of children with multiple-needs require support to find ways to play with their children.

Majority of parents had experienced negative attitudes towards their child from other parents and most considered this to be the most significant barrier to accessing mainstream play.

·         40% of parents said that additional financial costs was a major barrier to accessing play opportunities

63% of parents said they didn’t have enough information on accessible play opportunities in their area, and word of mouth is commonly used in place of official sources of information.

Families feel there is a lack of specialist support that can be accessed locally, and many make long journeys to access play settings.

There is a lack of strategic approach to funding play for children with multiple needs at local and national levels across England, with no notional funding for special educational needs and provision in the early years


Key recommendations from the report:

National policy:

·         Greater investment in play as part of early years funding to support play in the home and in mainstream services.

·         Developmental play services such as Portage should become a statutory service for disabled children under the age of two, with an increased emphasis on children with multiple needs.

·         Play should be a key strand of the Government’s policy on parenting and should be an explicit part of government-funded parenting classes.

·         The Equality and Human Rights Commission should investigate the exclusion of children with multiple needs from mainstream play settings, and take action to enforce the Equality Act 2010.


Local policy:

·         Local authorities should be required to take action, as necessary, against settings which intentionally exclude disabled children and fail to meet their legal duties under the Equality Act 2010.

·         Local authorities should take a lead on increasing awareness and understanding of the general public and other parents about disabled children. This could be centrally funded but locally delivered.

·         Local authorities should consider whether there could be a modest retraining of existing health professionals to enable them to provide the support needed to help families of children with multiple needs to play.

·         Local authorities should provide easily-accessible information for parents to help them to find out about existing play and support services.

Play settings:

Settings should ensure that play staff have received training on disability to help improve the way they support children and families.  This should include responding to medical needs and communicating with children with specialist communication needs.  The training should also enable them to create an environment and ethos which is inclusive and developmentally appropriate.

·         Every play setting should have a play policy statement which stresses the inclusion of every child.

·         Settings should plan carefully prior to the admission of every child in order to ensure their needs are met and that they will be welcomed and understood by other parents and their children.

·         Voluntary sector organisations should do more to share their significant experience of supporting children with specific impairments and multiple needs with public and private play settings.  This could include offering training and toolkits on inclusive play.


Sense Deputy CEO, Richard Kramer, said:

Play is critical in giving children the best start in life and improving outcomes for children and their families. The report makes clear, however, that where a child has multiple needs, the barriers they face to accessing play settings and activities are also multiplied. We hope that local and national policymakers, as well as play professionals, reflect on today’s recommendations, and make the necessary changes that will make access to play a reality for all children.
Sense will use the inquiry findings to campaign for changes to the way play services are designed and delivered. They plan to produce a series of toolkits for parents, providers and commissioners of play.

The full report can be downloaded at: www.sense.org.uk/play

Thursday 17 July 2014

Why I support assisted dying

I joined Dignity in Dying shortly after the death of my mother. I had shared care for her in her final years with my siblings and had watched her descend into vascular dementia, bedridden and often terrified.

Commentary has often focused on pain, but the nightmarish world of mum's dementia was mental torture: searching for lost crying babies under the bed, imagining there was a stranger in her bed, asking me to chase horses out of her room when Black Beauty was on the television, claiming she was being poisoned by carers, violently fighting the carers as they tried to wash and change her.

She cried out in pain when her almost fleshless body was  lifted in a hoist, spat out her medication and eventually pushed food and liquid away.

Clutching my hand she said, 'Why is it taking so long (to die)? Can't you help me?'

Earlier she had confided that she wished she 'hadn't woken up' after fall which had left her unconcious. Instead she had to endure a further two years when her mental and physical world shrank so that she could neither control her mind nor her body.

Despite the care of professionals and families, that period was certainly 'undignified' to say the least. Thankfully, she had signed a 'do not rescuscitate' form in the presence of a doctor during a lucid spell and her final two days were peaceful as pneumonia took hold.

We were able to play music and read her favourite poetry as we held her hand in the last hours.

However a peaceful death did not make up for two years of a living death and I wish that we had been able to let her die in her own way earlier. I feel guily about all the times I cajoled her into eating or sucking water from a wet sponge when she appeared to be doing it to please me, rather than because it was what she wanted. Joining Dignity was something I could for others in mum's position

I recognise that the issue is complex and it is not even clear that my mother's case would meet the criteria in the Bill.

I am aware of the concerns of some disability campaigners LINK about passing such a law in a period of austerity when the disabled are under attack and losing their benefits. I recognise worries about the elderly requesting assisted dying so as 'not to be a burden' and issues around unscrupulous relatives with their eyes on a legacy.

However, I am persuaded that there could be sufficient safeguards to ensure that these concerns are addressed LINK

Tomorrow the House of Lords will be voting on Lord Falconer's Bill. The sole Green Party peer, Jenny Jones, will not be present as she has a long-standing engagement to attend a 100th birthday party, but she has expressed support for the measure. In response to requests on her attitude to the Bill she said:
As a representative of the Green Party, this is an issue I take an interest in. I believe that people deserve choice, comfort and dignity in death, and would welcome any changes in law that would enable that.










Wednesday 19 February 2014

Brent activists join nationwide demonstrations against ATOS



In the 8am chill this morning activists from Brent demonstrated outside the offices of ATOS in Neasden Lane as part of a nationwide protest against the impact of ATOS assessments on disabled and unwell claimants. Individuals came from Kilburn Boycott Workfare, Kilburn Unemployed Workers, Unite the Community, Brent Green Party and Brent Fightback.

Motorists and pedestrians passing by were generally sympathetic and warmed our hearts if not our fingers.

This is from the organisers' website:

Statement of Intent – We oppose the reported ill-treatment by ATOS of those receiving sickness benefits. We are calling for the abolition of the Work Capability Assessment which is not fit for purpose. We believe that a qualified medical doctor, ideally the GP who regularly sees and treats the sick or disabled individual in question, is the only person able to decide if an individual is fit for work. These peaceful demonstrations will include a minutes silence at 1pm to honour the victims of Iain Duncan Smiths callous reforms.

On February 19th protesters will gather peacefully at the locations used by ATOS to carry out the discredited Work Capability Assessments. Many will provide a live stream which can be viewed on the campaigns webpage http://ukrebellion.com/atosdemo/. The event has attracted a wide range of high profile speakers from politicians to celebrities. The largest demonstration is taking place in the ATOS Head Office, 4 Triton Square, Regent’s Place, London, NW1 3HG London, United Kingdom from 10:00 to 16:00and included the following speakers

Ian Jones – WOW Petition
Paula Peters – DPAC (Disabled People Against Cuts)
Theresa Coles – Atos Miracles
Natalie Bennett – Leader – Green Party
Sonia Poulton – Journalist
 
Natalie Bennett said:
ATOS activities in the UK are a further, dreadful, example of the government’s failed outsourcing experiment. They have inflicted misery and fear on millions of people, and this must end. The medical professionals who treat them are the people who should decide on individuals’ capacity to work. We shouldn’t be pumping public money into the private profits of this health multinational. And we should remember: behind ATOS is the callous government policy of cutting social security payments to vulnerable people. We must ensure everybody who needs social security payments receives enough for a decent quality of life.
Caroline Lucas Green MP for Brighton was speaking at the demonstration planned in her constituency. She said:
Outsourcing the assessment of sick, disabled and vulnerable people to a private corporation, and especially one with such a disgraceful track record as Atos is disgusting…. Ministers have so far refused to take action to get rid of ATOS and their thoroughly discredited Work Capability Assessments. The day of action on February 19th is a chance to stand strong together against companies like ATOS until they are a thing of the past. I’ll be there and will do what I can to keep the issue alive in Parliament.
In Hull Labour MP Karl Turner MP and Green party Chair Martin Deane will attend and speak.

ATOS are clearly worried about the impact the demonstrations will have on their already tarnished reputation. One central claim they make is that

“We have no targets in relation to the outcome of benefit claims either at an individual or overall level.”
http://blog.atoshealthcare.com/2014/02/protests-targeted-at-atos-healthcare-assessment-centres-on-19th-february/

This clearly flies in the face of the revelations made by whistle-blower Greg Wood who lifted the lid on the toxic culture in the organisation and the recent report published by the centre for welfare reform “How Norms Become Targets: Investigating the real reason for the misery of ‘fit for work’ assessments” by Kaliya Franklin which demonstrates how targets to find people fit for work regardless of their individual circumstances have taken root in the organisation.

Sunday 1 December 2013

Can Brent provide for vulnerable young people amidst the cuts?

Local councils, faced with savage Coalition cuts to their funding, have often promised to make sure that the most vulnerable residents are protected. This is becoming more and more difficult, whatever the political complexion of the council. Alongside this councils are reducing the range of services to the core services required by statute. I have argued before on Wembley Matters that this may mean that services which are very beneficial to residents, and based on the council's recognition of a local need, may end up being cut: non-statutory doesn't mean not valuable or not needed. In addition, out-sourcing of some statutory services, muddies the water in terms of direct democratic accountability.

The December 9th Executive will be making decisions on a number of items that will have repercussion for services to the vulnerable.

They will be making a decision on procuring an Advocacy service for the following safeguarding 'clients'  to ensure they are safe from abuse:
  • older people with physical disabilities
  • young people (14-25 years old) with physical disabilities
  • adults with mental health needs
  • adults with learning disabilities
I am concerned that  'price' makes up 60% of the evaluation strategy for this procurement.

Another item is a change of provider for the Child and Adolescent Mental Health Service.  They propose to decommission services currently provided by Central and North West London NHS Foundation Trust.  In a key passage they state:
Information has been sought from other boroughs to determine what they commission. This work makes it very clear that while some boroughs do commission elements of training and systemic or early help provision, they do not fund direct therapeutic interventions. The proposed new provision,detailed in section 5 below, is therefore in line with that provided by other Local Authorities.
I hope the Executive will investigate that a little more. Rather than reduce services to match those of other boroughs, shouldn't Brent assess the value of direct therapeutic interventions?  I certainly found those useful for pupils and their families when I wa a headteacher and such interventions may save money in the long run. Officers argue that it is not possible to continue expenditure at current levels without jeopardising other services.

The proposals would reduce expenditure on children with disabilities by £50,000 to £146,000 and Looked After Children by £230,000 to £107,000.

Officers state:
The proposed change in the service could lead to an increase in support required through Care at Home and Direct Payments, and there is also the potential for some of these children/young people to become LAC. However, such pressures will be contained as the current service is supplementing a service already commissioned by the CCG and existing users will be able to access support from the CCG.
Clearly the first statement needs some discussion in terms of its implications for the individuals concerned. There is a possibility that too much responsibility is being shifted to the relatively untested CCG (Clinical Commissioning Group).

The report admits that there may be longer waiting time for Looked After Children requiring appointments but suggests that this will be dealt with by a requirement for the service to prioritise this group of young people. When I was familiar with this service several years ago waiting time was already a problem so I am sceptical that a notional prioritisation will address the problem.

More worrying also is a statement in the Equalities Impact Assessment that consideration had been given to consulting with users but that this was felt 'not to be in their interests to do so as it it would cause unnecessary anxiety'. The Assessment says it is intended to get views on the new service through the Care in Action forum for adolescents but it is not clear whether this will be before or after the changes are implemented.

A report on Higher Needs Student Eligibility is also tabled for November 9th.  This refers to educational provision for young people between 16 and 25 with a learning difficulty and/or disability. Arrangements have changed through new legislation and the local authority has to allocate appropriate provision:

The report states:
Council therefore needs to have processes in place to support this change and ensure that the allocated budget is not exceeded.
Funds allocated are about £18,000 per head for an estimated 140 people  next year.

The council will need to carry out a Learning Disability Assessment on young people who:

 Will be leaving school aged 16-19 and
• Is going on to further education, higher education or training and
• Is likely to need additional learning support to access education or training opportunities
• New children arriving from abroad who do not have a statement and have a learning difficulty or disability
• Children in mainstream schools that are supported by school action and school action plus support

Talks will be take place with further education colleges and other providers about provision whcih will enable 'young people with disabilities to live active, independent and fulfilling lives in the community.'

It will be important  to monitor the progress of young people and the quality of provision to see if fulfils these aims.

Wednesday 4 September 2013

Disabled People's Week of Action - today's Westminster activities

From DPAC (Disabled People Against Cuts)


Four themed ‘blocks’ will meet at 4 Government departments, central to the lives of disabled people. After handing over our demands, blocks will then move towards Parliament where we will formally launch the UK Disabled People’s Manifesto and present our demands to our elected representatives.

 Choose your ‘block’ and meet at 12.45pm at one of:

 Department for Education to oppose government attacks on inclusive education and a return to segregation
(SanctuaryBuildings, 20 Great Smith Street, London, SW1P 3BT)

 Department of Energy and Climate Change if you’re angry about the numbers of disabled people living in fuel poverty while the energy companies rake in ever growing profits
(3 Whitehall Pl, City of Westminster, SW1A 2AW)

 Department for Transport to challenge inaccessible transport, the opening of new inaccessible stations for Crossrail and proposed cuts to rail staff further reducing customer assistance
(Great Minster House, 33 Horseferry Rd, London SW1P 4DR)

 Department of Health to defend our NHS and demand our right to levels of social care support enabling choice, control, dignity and independence
(Richmond House, 79 Whitehall, London SW1A 2NS)

LOBBY OF PARLIAMENT:
5 – 6pm – launch of the UK Disabled People’s Manifesto
in Westminster.
 Four themed ‘blocks’ will meet at 4 Government departments, central to the lives of disabled people. After handing over our demands, blocks will then move towards Parliament where we will formally launch the UK Disabled People’s Manifesto and present our demands to our elected representatives.
 Choose your ‘block’ and meet at 12.45pm at one of:
 Department for Education to oppose government attacks on inclusive education and a return to segregation
(SanctuaryBuildings, 20 Great Smith Street, London, SW1P 3BT)
 Department of Energy and Climate Change if you’re angry about the numbers of disabled people living in fuel poverty while the energy companies rake in ever growing profits
(3 Whitehall Pl, City of Westminster, SW1A 2AW)
 Department for Transport to challenge inaccessible transport, the opening of new inaccessible stations for Crossrail and proposed cuts to rail staff further reducing customer assistance
(Great Minster House, 33 Horseferry Rd, London SW1P 4DR)
 Department of Health to defend our NHS and demand our right to levels of social care support enabling choice, control, dignity and independence
(Richmond House, 79 Whitehall, London SW1A 2NS)
LOBBY OF PARLIAMENT:
5 – 6pm – launch of the UK Disabled People’s Manifesto
- See more at: http://dpac.uk.net/2013/08/reclaiming-our-futures-freedom-drive-4th-september/#sthash.11I4Gr4y.dpuf