Wednesday, 18 May 2016

Why should Academics support Learning Disability England?


Jan Walmsley writes about why academics want to support Learning Disability England and how they can help people with learning disabilities and families change things for the better. 

Back in 2015, I answered a call Simon Duffy put out challenging academics to rally round the Learning Disability Alliance. I offered to help. It has taken a lot longer than I thought possible, but now we are ready to launch a network of academics to support LDE.
Of course, this is not new. A lot of academics have already been active supporting families and people with learning difficulties to fight for justice, particularly the Justice for Laughing Boy campaign (#justiceforLB). The Network is a way of getting more people involved, supporting a broader range of campaigns. Without doing too much advertising over 30 people have signed up to these principles:


1.       We will do everything we can to uphold the UN Convention on the Rights of People with Disabilities
2.       We will argue for a fairer share of resources for disabled people 
3.       We will seek to promote teaching and research which is likely to be of value to people with learning disabilities and their families; and to share research in ways that are accessible
4.       We will take every opportunity to listen to and understand the concerns of people with learning disabilities and families to find out how we as academics can best support them.

Why am I excited about this development?

There are two reasons.
The first is a negative impulse. I have watched in despair as so much that we fought for since the 1980s vanishes. The list is long. The closure of institutions, financial provision for families and people with learning difficulties, a broad consensus that these are people who deserve support, self advocacy groups, individual budgets, all in danger. Whereas once, young people with learning difficulties could expect to have help in finding a home on reaching their twenties, now they are forced to stay with families – or, if ‘challenging’, in danger of being taken off into the uncaring care of ATUs and similar. Families are either unsupported or kept at a distance. And people are dying, because of (proven or suspected) negligence. Connor Sparrowhawk, Thomas Rawnsley, Nico Reed, and many others who die prematurely because they do not get top quality timely health care.  What can I do to help? The Network is part of my answer.

Secondly, and this is a more upbeat message, I am excited about the possibilities of bringing academics into dialogue with self advocates and families. If I am known for anything, it is probably championing ‘inclusive research’, research where people with learning difficulties are equal partners, in deciding what questions to ask, and how, in working alongside researchers to do the work, and share it. The advent of LDE opens up the possibility of taking this further. If we, as academics, can work with self advocates and families, we stand a chance of identifying shared research priorities. In a way that has rarely been achieved since Mike Oliver called for ‘emancipatory’ research controlled by disabled people in 1992, I can see the potential of the agenda being set by self advocates, and families, with academics advising, helping to get the funding, and working in partnership to actually do the research. It is rather like Knowledge Exchange, which has brought academics and business together for mutual benefit. I dream of something similar working for social change.

What might we do?

  • Listen!
  • Gather evidence about what is happening and share it on the LDE website.
  • Encourage students to make contact with self advocates and families, hear their concerns and perspectives
  • Support students to work in collaboration with self advocates on projects and dissertations.
  • Argue for a change in culture so that is seen as the way we do things to work in partnership with people who might benefit from research
  • Summarise research findings on topics that matter to people with learning difficulties and families in plain English, share via the website and LD ELF.  
  • Share expertise in creating easy read information
  • Analyse data (a la Chris Hatton Blog) and share
  • Join specific campaigns as advisors


If you are a student, a researcher, a teacher in higher education and want to join us? Just get in touch


Here is some Plain English information about what the Academic Network will do
Academic Network- Plain English

Jan Walmsley is visiting professor of leadership and workforce development at London South Bank University and visiting professor in the history of learning disability at the Open University
Twitter @WalmsleyJan email: janwalmsleyassociates@gmail.com



Monday, 18 April 2016

Day 1. Life Begins at Home #7daysofaction

#7daysofaction is a campaign, led by Mark Neary , a long time campaigner who had to fight for his son Steven to come back home from an ATU, and families of people that are stuck in ATUs right now.

We want to support #7daysofaction in highlighting the real experiences and injustice that people face every day when being placed in services away from their loved ones, often in services that do nothing to help and that sometimes make things worse.  We want to support by offering independent advice and information for people that need housing and support with/close to family and home.

We know what it looks like and what needs to be put in place to support people well with their families and in their communities, yet still today, despite all the scandals and publicity, we see Eden Norris fed through a hatch in an ATU where he doesn't need to be and shouldn't be. We offered help to his council who are supposed to be bringing Eden back to his community by finding a housing provider who would buy something for Eden close to his family and a care provider that already works with the council and has a good track record in supporting people when they come out of ATUs. Despite offering this, the council brushed us off in the same way they have done with the family. We halted the process of putting housing and support in place because the family were warned not to make this public and were fearful about what would happen if they did. This is scandalous and needs to be stopped.

Life Begins at Home 





We were funded to write a guide about housing for families of children who are at risk of being placed away from their families and thought that today was a good day to launch it.  Life Begins at Home has all the information that families and housing, health and social care professionals need to make housing solutions work for them and to understand what needs to happen locally to keep children with their families.

You can download the guides here




Friday, 18 March 2016

A perfect storm looms threateningly over independent living for people with learning disabilities


Whilst we are all still reeling from the fact that a majority of MPs voted for disabled people receiving ESA and in the Work Related Activity Group to have £30 a week taken from their benefits,   George Osbourne’s budget was shocking in its clear intent that disabled people will bear the brunt of the cuts. The budget did not even mention social care.
The National Living Wage comes in on the 1st April 2016, a welcome development if support and housing providers can pay a wage that direct support staff deserve. But with little evidence of cash strapped local authorities increasing fees and no support from central government, we will see more and more support services becoming unviable and unsafe.
The lack of clarity over the future funding of supported housing and how the LHA cap will affect rents has left landlords and developers in a position where they can’t invest in housing for disabled people and incur the inevitable higher costs because they can’t be certain the housing will be affordable.
Yesterday the Equality and Human Rights Commission published a profoundly depressing (but not shocking) report  England’smost disadvantaged groups: people with learning disabilities that says that many learning disabled people are still excluded and continue to face inequality in every aspect of their lives. Still only 7% of adults with learning disabilities have employment, people with learning disabilities have poorer health than the rest of the population and die younger than everyone else.  The average age of death for people with learning disabilities is 58 years compared with 82 years for other people. A recent independent review by the audit company Mazars, found that one NHS Trust failed to investigate the deaths of more than 1000 people with learning disabilities or mental health problems.
The Winterbourne View programme floundered because we failed to develop the community based services that people need to avoid hospital admission, this includes the housing and support that enables people to live independently and more than 3000 people remain in hospitals, many unnecessarily.
It is widely acknowledged that supporting people with learning disabilities in their communities requires investment in good housing, care and support to ensure that they have the same rights as everyone else to determine their lives. Good community support keeps people healthier and happier and reduces the burden on the NHS,  yet current reforms, practice and spending do exactly the opposite.
Where are we supposed to go from here?  The housing, care and support organisations that are based on principles of social justice and equality are torn between a need to maintain integrity and safety in what they provide and not drive down the quality and quantity of the support they give. If they say they can’t do this anymore, the people they support will be tendered out to the lowest bidder and they let down the very people they have been fighting with and for to achieve an equal place in society.
My colleague Dr Alison Rose-Quirie, CEO of Swanton Care and Community and a Director of H&SA, agrees that the Government is failing the most vulnerable members of our society.  
Earlier this week she said: “The Chancellor claims his recent budget was one that ‘puts the next generation first’ - but what about today’s generation of vulnerable adults who need help now?
"The extent of the current funding crisis in social care is unprecedented and the fact that the budget did not warrant a single mention is troubling.
“We were already facing challenging conditions, as accelerating demographic changes mean an ever increasing demand for our services, but add to that the introduction of the National Living Wage and many providers are wondering what the future holds. The implications for a poorly resourced social care sector will also have ramifications for the wider health service and the NHS.
“Put bluntly, if social care providers decide to leave the sector vulnerable adults will end up in unsuitable care settings that will put immense pressure on an already struggling system. In truth we are one system, not two, and the sooner we move to full integration the better for all our sakes.
Next week the Housing and Support Alliance welcomes a visit from the Australian politicians that are successfully dealing with these issues alongside care and support providers and disabled Australians and their families. A Productivity Commission in Australia found that it would cost more to do nothing about the growing need for social care for working age adults than to provide an entitlement to social care through a National DisabilityInsurance Scheme. This simple finding forced the government to look at funding properly, and in giving disabled Australians a fair amount of funding for social care, they are already finding that they are spending money better.
H&SA fully supports Norman Lamb’s calls for a cross-party commission on NHS and social care if it can achieve what is needed to give people with learning disabilities a future they can look forward to. However, right now there are thousands of people with learning disabilities, for one reason or another, that face a fearful and uncertain future and as organisations that support them, we need to stand by them and challenge every threat and every injustice that those we support face. What alternative is there?

Alicia Wood, chief executive, Housing and Support Alliance






Tuesday, 23 February 2016

Help us create Learning Disability England!

Housing & Support Alliance is working with the self-advocacy group People First England to create a new membership organisation, Learning Disability England.

Learning Disability England will bring together three groups: people with learning disabilities, family members and friends, and organisations. We will work on the things that matter to all of us.




We  want  to  create  Learning  Disability  England  because, in the words of self-advocate Gary Bourlet, ‘life for people with learning disabilities in England is not good at the moment’.

Currently  the  voice of  people  with  learning disabilities,  family  members  and  organisations  is  fragmented.  We need to link up all the good work that’s happening across the country and create a voice that’s so powerful it cannot be ignored.

You can read Gary Bourlet’s thoughts on why we’re creating Learning Disability England here.

We’re currently in the middle of a consultation where we’re asking as many people as possible what they want Learning Disability England to be like.

We’ve already got feedback from over 300 people.  

The consultation will close at the end of March so there’s just one month left to tell us what you think!

If you’re a person with a learning disability, a family member or friend of someone with a learning disability, or someone who works for an organisation that works with people with learning disabilities then we want to talk to you!

You can take part in the consultation by completing an online survey that only takes five minutes. There are three different surveys and you can fill out whichever apply to you.

The survey for people with learning disabilities is here.

The survey for families and friends is here.

The survey for organisations is here.

If you’d prefer, you can also take part in the consultation over the phone. You can call Annie on 07780 707 577 or email her to arrange a time to speak – annie.tidbury@housingandsupport.org.uk.

Make sure you don’t miss out on the chance to shape this exciting new organisation! 

Wednesday, 2 December 2015

Learning Disability England Vision & Mission


On October 13th people with learning disabilities, families and organisations came together to talk about building a new membership organisation, Learning Disability England; an organisation that we think could create real change for people with learning disabilities and their families. You can read more about that day here.

One of the things we did on October 13th was think about what the vision and mission of Learning Disability England could be.

A vision is where an organisation wants to get to in the future. 

A mission is what an organisation exists to do. 

We took all of the ideas that we came up with and drafted a vision and mission. We then went back to everyone who came on October 13th to ask them what they thought. We did this twice and now we’re excited to say that we have the final vision and mission! Here they are:


Our vision is a world in which people with learning disabilities and their families are respected, valued, and live full and equal lives.

 Learning Disability England’s mission is to:
  • Bring together the power of people with learning disabilities, their families and organisations. 
  • Campaign on the things that matter to us and create change. 
  • Make sure that people with learning disabilities and their families are heard; in the media, in politics and in our communities. 
  • Be led by people with learning disabilities in partnership with families, supporters and allies. 
  • Provide advice and support to members.
 

We’re really happy with this vision and mission and we hope you like it too. We like it because it’s simple, accessible and most importantly of all we like it because it was written by people with learning disabilities, families and organisations all working together.

The next stage of creating Learning Disability England is the consultation. We’re going to be starting the consultation process this week and we’re going to be speaking to lots of different people about our ideas for Learning Disability England. The consultation will close in March and by then we hope to know just exactly what people want from the new organisation and how they want it to work for them.

If you want to be involved in the consultation or if you have any questions about Learning Disability England, get in touch with Annie at annie.tidbury@housingandsupport.org.uk.



Wednesday, 21 October 2015

Making Our Voices Stronger Together

Some thoughts about our meeting on 13th October 2015 to form a new learning disability membership organisation.

Here is the presentation from Gary and Alicia :

video

“This was a new beginning and we achieved quite a bit. The workshops went very well and hopefully we’ll get even more people involved in our new Learning Disability membership organisation. We know things are bad out there so it would be great for all of us to work together rather than separately.” – Gary Bourlet
A big thank you to all our members, colleagues and friends that came along on October 13th to think about what we want to achieve with our new membership organisation. It felt like we took the first small steps to making this happen, but those steps felt strong. The day was fun but also had a seriousness and purposefulness that showed that we all meant business.
The timing could not be better; 
The day took place at the same time as the LBinquest was happening and we witnessed an in-depth account of poor service provision and neglect that ultimately led to the death of a young man with learning disabilities; 
It took place at the same time a group of parents were meeting the care minister, begging for their young people to be let out of ATUs; 
It took place the week after we found out that there are still the same number of people living in ATUs as when the Winterbourne View scandal broke because there are still not enough services to keep people in their communities;
It took place the same week that the Care Quality Commission launched a report that linked poor care services with the government austerity drive;
And it took place the same week that the United Nations launched an investigation into the UK government for breaching the UN Convention on the Rights of Disabled People.
We need to come together now more than ever. Of course there is also much out there to celebrate and things have definitely changed for the better since Valuing People, but we cannot ignore the fact that things are not good in England for people with learning disabilities right now.
Karen Flood and Rob Greig had strong messages; we cannot continue to allow people with learning disabilities and families to be treated badly, we can no longer afford to be complacent and we can’t continue to work in isolation or compete with each other. We have learned from history that things can change when we all pull together.
James, Beth & Jill from Brandon Trust showed us a way we can really listen to people by bringing everyone’s voice together and making big plans from that. We can learn from them and think about how we can do the same with thousands of people.
In the afternoon you took part in workshops which thought about what our vision would be and what we want to achieve as a new membership organisation. Thank you to all the facilitators: Paula Edmonson, Marianne Selby Boothroyd, James Kelley, Beth Richards, Jill Corbyn, Sarah Maguire and May Lee. 
Self advocates, families and organisations all had a different take on what they want but also shared many themes. Power was something that came up a lot – everyone wants to make sure that people with learning disabilities and their families has power in this new organisation. All of the groups also talked a lot about bringing people together and the fact that we’re much stronger when we work together. 
It was particularly exciting to see, meet and hear self advocates with clear and strong voices, and families with passion (!) and energy. The day brought people and families together along with those organisations that are committed to people with learning disabilities having good lives. Thanks to initial funding and support from members; Advance, Aldingbourne Trust, Avenues Trust, Brandon Trust, Certitude, Choice Support, CMG, Dimensions, Keyring, Macintyre Charity, Paradigm, RLO, United Response, 3Cs along with our partners and friends that have come on board, Inclusion North, NDTi, Foundation for People with Learning Disabilities and BILD.
The last thing we did was ask everyone to sum up how they felt about the day. Here’s what you said:

Thank-you all, we look forward to going on this journey with you.
People First England and Housing & Support Alliance


Friday, 6 February 2015

A Tale of Two reports



We saw the publication of two reports this week, Care services for people with learning disabilities and challenging behaviour, National Audit Office and Actually improving care services for people with learning disabilities and challenging behaviour The JusticeforLB HERB Audit Office.

There could not be more of a contrast to two different approaches to bringing about change. We have been involved in both at the H&SA.



Since June 2011 when the Panorama story broke about Winterbourne View we were involved in developing the concordat, advising the government, advising the Winterbourne JIP and writing paper after paper of recommendations, figures and reports to make sure we could share our knowledge and skills in getting people out of hospitals and keeping them from going in in the first place, which is significant. We even wrote to every NHS & LA commissionerand MP in the country with a copy of Thereis an Alternative which set out real examples and costs of people who challenge living successfully in their communities. 

We were not contracted or paid to do any of this work except for a small amount of consultancy work on welfare benefits for the Winterbourne View JIP. We took our commitment to the concordat seriously and did everything we could.

So much of the NAO report filled me with rage and it makes difficult reading…

In December 2012, when agreeing the Concordat, the scope and the quality of data on patients with learning disabilities was poor.  
Yes this is a problem but you knew that there were way too many people in these places and this should not stop any other action

The government left it to mental health hospitals, NHS commissioners, and local authorities to decide how to meet the commitments.
Whilst the programme lacked any real co-ordination and leadership (and this was a problem), aren’t the local people responsible paid to do a job (some whopping salaries there)?  Aren’t they supposed to be skilled at what they do? They take public money to do their jobs and they still need to be nannied by the government? Really?
    
As funding did not follow the patient, there was no financial incentive for local areas to bring patients home.
This line made me feel nauseous. Why the hell do you need a financial incentive to get people out of places they shouldn’t be in the first place? Do people paid by the state really need a financial incentive to do what they are paid and directed to do?
I said at a WV concordat planning meeting in October 2011 that the programme would not work unless money followed the people. This was either ignored or written off as too difficult.

Joint work between health and social care commissioners is vital to make discharges from mental health hospitals sustainable
No s**t!  We’ve known this for years and there are plenty of examples where it is done and works. Just google it.

Developing robust community services for people with a learning disability and challenging behaviour takes time.
We told everyone that would listen that this was the case. There are only a limited number of providers that support people who challenge successfully in their communities. We wrote a report and offered help with this. We shouted, pleaded and wrote reports about the need for capital investment in housing. Only recently has there been action.
I dispute many of these excuses for not meeting the commitments in the concordat. I put it down to a lack of responsibility taken by commissioners, providers with vested interests and poor programme leadership and co-ordination. This has been underpinned by inertia and a simple refusal to listen and act by those who have power.  This week particularly, I have felt ashamed to be a professional working in this field.

Actually improving care services for people with learning disabilities and challenging behaviour, JusticeforLB report 

Alternatively, we have the #JusticeforLB  #LBBILL campaign and its painfully honest and direct approach to bringing about change.

We took one of the #107 days and decided to do something practical in Connor’s memory http://www.housingandsupport.org.uk/hsa-day-83-107-days  14 NHS commissioning teams were written to, tweeted and sent a follow up letter to offer help to get housing for people stuck in ATUs. 

Out of the 14 teams we approached, 5 responded and we have been actively helping them with getting housing. The remainder did not respond or request help. This did not surprise me, especially now given the NAO report and LD census figures that show how little has moved on.

It was liberating doing something practical to try and move things on and feeling part of a movement for change where people’s hearts are in the process.  During this process I was contacted by a senior person responsible for delivering change nationally and warned off from going through such a public process to challenge/help commissioners. I was asked “Who are you to tell commissioners what to do?” I replied that I had signed the concordat and made a commitment to do something and got the response,  “ Yes, but who ARE you?”  

This says it all for me. If we have to leave it to people like that to change things ,we will never get anywhere.  In less than a year we are heading for the second draft of the #LBBill on virtually no budget, great heads and big hearts of the @JusticeforLB team. Justice for Connor moves slowly but it is moving.  

I feel proud to be part of this. Had I been asked today “ Yes, but who ARE you?”  I would have responded proudly “ I am an LBBiller!”


Wednesday, 24 December 2014

Merry ******* Christmas


About 20 years ago,  I worked in a respite service for Certitude where we provided what was then considered an innovative service offering activity based respite to people with learning disabilities and their families. We made a point of making sure that people who were considered the most complex or challenging (and therefore other services did not work for them) could come along and do something they loved and we would do everything we could to make this work for them and their families. The needs of the people we supported and their families dictated what we did and how we did it down to how we were staffed and what times we worked.  

Angela was a young woman who we supported. She was labelled challenging but actually she was simply a determined, bright and feisty woman who knew exactly what she wanted and responded to the unreasonableness of this being denied her. We worked with her and her family to give her good support and do what she wanted and she was one of the many people we supported that really taught me about what good care and support is;  how we need to let go of power, egos and everything we have learned and just listen carefully and act on what people say and be honest and real.

I often think of Angela at Christmas. We had a Christmas party at the respite service and we were all too busy to really focus on individual people- a big mistake. Angela was bored and wanted some action and she got it by pushing a fire alarm and getting some men in uniform to give her some attention. The fire brigade arrived quickly as we were being evacuated from the building into the freezing cold night.  Angela grabbed a fireman by his arm and tried to coax him into conversation but he moved her to the side dismissively trying to get into the building. Her dejected response  “ Merry ******* Christmas” was a piece of perfectly timed comic genius that is often repeated in my house at Christmas.

I wanted to write a festive and upbeat blog to wish everyone a happy Christmas but I’d rather be honest and real because the truth is, 2014 was a tough year. It has been a year of scandals about incompetence, neglect and abuse in the care industry, a year of inaction to address the problems and a year of reports, reviews, endless statements and blogs.  It has been the year when people who die and are abused and neglected in care and their families are treated with breathtaking contempt in full public view by the organisations that are paid to care for them. So, sorry that my festive offerings are meagre this year and instead I will focus on some resolutions for 2015.

Investing in people speaking for themselves

One of the big highlights of this year was seeing Gary Bourlet of People First England on primetime news responding to the Bubb report .  A person with a learning disability speaking out and challenging and offering millions of people an alternative view of people with learning disabilities to the usual ‘voiceless victim’ portrayed in the media and by charities. Watching Gary Bourlet and Shaun Webster from Change speaking and challenging at political party conferences has convinced me that us charities do not need to speak up on their behalf anymore- there are plenty of people and families that can speak up better than any of us professionals can.  My first new year’s resolution is as a charity,  to stop speaking on behalf of people with learning disabilities and put the money and resources we have into making People First England stronger and louder. I will also encourage other organisations that speak on behalf of people with learning disabilities to do the same.

Truth and Reconciliation

2014 has been the year when social media has come into its own in social care and those who have suffered injustice, neglect and abuse are sharing it with the world. This new openness and sharing through social media has highlighted the awful effects on people’s lives and we are being touched by this in ways that had never been possible previously when all we got was a newspaper report or a 1 minute slot on the news at best.  We are feeling the pain of people’s experiences alongside them through facebook, twitter and blogs and this is in stark contrast to the sanitised, jargon filled and often meaningless communication that comes from some health and social care organisations. A lot of damage has been done to people with learning disabilities and their families by organisations, people and systems that think they are doing the right thing and mainly want to do the right thing but don’t. Inspired by the blog from http://www.changepeople.org/blog-and-news calling for truth and reconciliation I want to see a more honest dialogue between health and social care organisations and the people and families we support. It was shocking and sickening to see the carefully worded and defensive responses from 3 NHS Trusts to reports on their poor services and the deaths of people in their care. If social care and health organisations invest less in promoting themselves positively and instead, really listen to what people and families are experiencing and encourage their staff to communicate with honesty, humility and humanity, we might get somewhere in building bridges and moving on.

Time for a rethink

Any CEO of a learning disability charity will have drawn breath when reading this blog http://mydaftlife.wordpress.com/  by Sara Ryan about the effectiveness of charitable organisations that work on behalf of people with learning disabilities. It cuts right to the chase and questions our existence, rightly. It has focussed on a few named charities but the same applies to many more, including us at H&SA.  Like others, we have invested significant money and time since Winterbourne View on trying to change things. We are good, knowledgeable people, doing a lot of good work but if nothing has changed, and things are actually getting worse, then we are not doing the right things and we need a radical rethink about what is needed. My second new year’s resolution is to encourage an open and honest conversation about this between self advocates, families, us and other  charities and have a rethink about this. I welcome comments and thoughts on how we might do this.

Wishing you all a Merry ******* Christmas and a 2015 filled with honesty, openness and humility!




Tuesday, 25 November 2014

Letters from the edge

At H&SA this morning, like many, we are feeling sadness, despair and impotence about the verdict of the inquest into Stephanie Bincliffe's death.
http://www.irwinmitchell.com/newsandmedia/2014/november/inquest-into-death-of-stephanie-bincliffe-while-detained-under-mental-health-act#
There will no doubt be hand wringing and calls for change but it feels hollow and meaningless after so many deaths, abuses and injustices that still go on today and every day.
We have different messages for different people and organisations involved in the continuing incarceration of people with learning disabilities so we wanted to write publicly to all of you;

To the family of Stephanie Bincliffe,

We are so sorry for your loss. Stephanie’s death could have been prevented and we are aware that unless we have been through it, none of us can begin to understand the depth of your pain and grief. 

Your statement about Stephanie’s death and the inquest for the Challenging Behaviour Foundation is beautiful in its recognition of Stephanie as a beautiful, unique and valued human being. We are sorry that our appalling system did not see her in this way.      

“Beyond question Stephanie was a unique individual who was a teacher in disguise to those who listened. I feel there are no words to begin to describe her loss to me; however I feel this was her final lesson to us all. 
“Stephanie had a beautiful mind which was often misunderstood; my life has an emptiness now she has gone. My only sanctuary is that now she is truly free. Anything that happens now as a result of her passing on will be bitter sweet for me. As a family we relentlessly did all that was possible for us to do in our power, to no avail. We felt that we had no voice and we could only watch in agony as the one we loved and knew deteriorated and faded away. 
“As a family fighting for Stephanie it felt like a real life David and Goliath battle but with no triumphant ending for the underdogs.”


Our love and thoughts are with you,

The team at H&SA



To providers of Assessment & Treatment Units,

Some of you take huge amounts of money from the state to provide an ‘expert’ service. Some of you are the state. If you are not expertly and successfully assessing, treating and discharging people who genuinely need to be in secure services, STOP DOING IT.

 I don’t want to hear anything about learning lessons and improving quality. If you don’t know what you are doing now in 2014, post Mansell Report, post Valuing People, post Winterbourne View  with all the information and resources available that show how it is done well, you are not fit to be providing services to vulnerable people and you should just get out of this business all together. 

Please don’t try and rebrand your services as community based, supported living blah blah blah…. There are plenty of good providers already out there and we don’t need you.

Some of you will throw your hands helplessly in the air and plead powerlessness in the hands of commissioners that keep asking for your services. It is no excuse. Taking exorbitant amounts of money from a cash strapped sector where people aren't getting basic needs met and at best providing services that don’t do what they are supposed to do (at worst separating people from those they love and making people’s behaviour worse and in some cases ending in death) is making money off the back of incompetent commissioning and is immoral and obscene. An organisation that does this can never achieve the culture and values that are needed to provide brilliant services, so please just go.

yours faithfully,

Alicia Wood
Housing & Support Alliance

To commissioners that place people in ATUs,

Don’t send people to ATUs unless they really need it ( see Mansell Report 1 & 2 and Chris Hattons’ estimate about need http://chrishatton.blogspot.com.es/2014_07_01_archive.html ) . If you think that more than the tiniest percentage of people need to go to an ATU, you are not sufficiently knowledgeable and skilled to do your job and should get another.

If you feel that there is no alternative, this is not true - there is. There are plenty of housing and care providers that are supporting people with the most ‘challenging behaviour’ to live in their communities successfully. Call me and I’ll tell you who they are (tel 020 7993 8361). It’s that simple.

If  you spend the huge amounts of money that you would usually spend on ATUs on services that people and their families want and if you put your energy into working with families instead of fighting them and wearing them down, you are likely to be successful in getting a good result (and it is likely to cost you less). If you think that is not true and that you know best, you should probably not be working in this field and it is time to get another job.

For those commissioners with historical problems that mean you have lots of bad practice to undo, I feel for you and know it is hard, but there are plenty of us out there that can help. If you work with organisations, policies and practice that put you in impossible situations, stand up and say you will only do it the right way. Go public if necessary and speak out against bad practice, tell those in charge, go to the press, go on social media. If you can’t do this (and I respect any employee that is in fear of speaking out) then get another job and don’t collude with these injustices against people with learning disabilities.  

yours faithfully,

Alicia Wood
Housing & Support Alliance

To psychiatrists that will not discharge people from ATUs,

A small minority of people need to remain in secure services (read Mansell reports 1 &2 and Chris Hatton’s blog http://chrishatton.blogspot.com.es/2014_07_01_archive.html ) . Most people will fare better with good support in their communities. People should not be detained just because you work within a medical model and don’t understand how people can live successfully in their communities.

If you need to understand this better and avoid illegally and immorally detaining people in secure services, call me (020 7993 8361) and I will put you in touch with the right people and organisations to get the help you need. If you don’t believe that most people with learning disabilities and autism don’t need secure services, you should get out of this sector and find another job.

yours faithfully,

Alicia Wood
Housing & Support Alliance



To the people and families that continue to experience this injustice,

I am so sorry this crap continues. We want you to know that there are many people and organisations out there who are willing to roll up their sleeves and take action, put their hands in their pockets and shout to change all the awful stuff that is going on. Sometimes we also feel impotent but we are not prepared to give up and will stand with you.

The Challenging Behaviour Foundation (tel 0845 602 7885), Respond (tel  0808 808 0700) and H&SA  (0300 201 0455) all have great advice services if you or your family member is in distress or at risk of being sent to secure services when they need help to stay in their communities.

There are a group of people, families and allies trying to change the law to make it harder for people to be sent away from their families called the #LBBill , please get involved and pledge your support http://lbbill.wordpress.com/

To get involved in campaigning together to challenge theses injustices and change policies and practices join the Learning Disability Alliance because together we are stronger. www.learningdisabilityalliance.org

There are people, lawyers and organisations that can support you well so don't be palmed off with the wrong service and shout, scream, beg or do whatever it takes until you find them. 

In solidarity,

Alicia Wood
Housing & Support Alliance


Tuesday, 10 June 2014

Day 83 #107days



H&SA adopted Day 83 of the #107days campaign alongside our friends at BILD. Like most people, I watched with horror as we saw what was happening to Connor and his family. No-one could have predicted the tragedy of what eventually happened but I find myself repeatedly wondering what I could have done to prevent it.  The truth is that I don't know what I could have done. This is a difficult truth for me to acknowledge. In my work I have always believed there is a solution, a way to a better life that just requires listening, acting and perseverance, but recently I am not sure if this still holds true for me. The world of care is so riddled with rot that not even the strongest of families knew how to get what their son needed - something simple and straightforward.

Today, we decided to do something practical to help get people with learning disabilities out of ATUs and in some small way, make sure that Connor's legacy makes lives better for people who are experiencing what he experienced. The latest NHS England data says that there are 2358 patients living in ATUs that do not have a transfer date.  There are various reasons given for why most of those people do not have a transfer date. For 165 people it says that the reason they are still there is that there is not suitable housing provision locally.

Our commitment to #107days is to try and find out what the local issues are and offer help to get housing for each of those people. We will do this by:

  • Contacting each of the 14 commissioners who have responsibility for moving people on
  • Finding out what the local issues are
  • Offering support, information and contacts to help all of those people get housing.
  • We will publish the responses from commissioners and our response on our website http://bit.ly/1xBypWC 
  • We will follow up with (hassle) all commissioners until we feel satisfied they don't need help to get the right housing for the people who need it. 
In the last 3 years, I have spent countless hours in meetings advising on how to get people out of those places and stop people going in. I have spoken at conference after conference. Thousands of people being paid thousands of pounds to talk about what happened at Winterbourne View, to talk about what happened to Connor and to talk about the failures of countless other organisations in meeting the needs of people. And still no change. More people going in to ATUs than coming out.

But today was great. Contacting all those commissioners that can't get people back to their communities because of a lack of housing. Housing is what we are good at, something solid that we know how to make happen. Finding out about the 165 people needing housing across England and helping them. Contacting real people, mostly who want to do the right thing but don't know how, and having a named person to support (or hassle if they don't accept help) and make a difference.

It will take a little while. Some NHS areas can't even pick up their phones or publish the right contact details but we will persist. For Connor and all of those people who are victims of our rotten system.





Friday, 25 April 2014

An ESA tale...

Tammy Murray is the Housing Advice Service Manager for H&SA. She blogs about some of the issues we deal with through our advice service










"I am writing to you with regards to the recent decision  that you do not qualify for Employment Support Allowance....."


Sound familiar keep reading …….

Not qualifying for the support group of Employment Support Allowance (ESA) is a common theme for many disabled people who are being reassessed for benefits.
  
We supported a person recently who was in this situation unnecessarily and this may have been different if they had the right advice and support from the outset.
The customer was receiving Employment Support Allowance (support group) and was requested to attend an interview to assess their current claim. Contained within the supporting evidence was reference to a number of physical and mental ailments and noted that they had a learning disability. 

The customer was notified shortly after the assessment that they had not qualified for the award and that they scored virtually zero in every category. This can be almost totally attributed to pure ignorance about learning disabilities by the assessor.

This customer was supported to seek advice and contacted H&SA. The advisor was able to look at the activities and descriptor criteria for an ESA award, all previous correspondence and came to a decision that there was a reasonable challenge to be made.

Every day, many people  are being informed they do not qualify and are not always in touch with organisations that can help. This particular case the customer scored 0 in many areas which was an incorrect judgment made by the assessor.

Unless you are equipped with the necessary information to support a challenge you could be left with a decision that is often the wrong one. This can be for various reasons such as:
  • The assessor not being made aware how complex the persons disability actually is and taking everything at face value
  • Not submitting the right supporting documents at the beginning of the assessment.
  • People not trained to support someone through an assessment, how many people are supported but actually the person can make matters worse with their comments

There are lots of factors to take into account when appealing a decision and supporting information is high on that list. Having competent staff to support the process, which thankfully during the appeal on this occasion the customer had a great support team that pulled together information required through advice given by H&SA.

This recent challenge was supported by H&SA and proved to be a success and demonstrates that seeking professional advice can only increase your chances at appeal hearings.

The tribunal re-instated the original award of ESA on the basis of the previous facts and their new findings.

if you have a learning disability and need some help, please contact our advice service.






Monday, 14 October 2013

Creating more housing opportunities for people with disabilities


Jayne Knight, Development Lead for The Cameron Trust

Since July of this year I have been developing the Cameron Charitable Trust. This has been with the full support of the Housing and Support Alliance, in particular Alicia Wood, who has spent the last two years creating and planning this with the founder, Duncan Cameron. Do you know that according to Mencap the growing number of people with learning disabilities alone requiring accommodation is 2,265 every year until 2026? The need for good quality housing has never been so important.

The Cameron Trust is already running very efficiently in the South West and now has 40 properties all very suitably adapted or designed and purchased for people with a learning disability. It launched officially in November 2012 and is due for its second stage launch in December 2013.

So what’s happening now? The Cameron Trust is in the process of registering as a Registered Provider of Housing with the Homes and Communities Agency (HCA). This means it can lease property or purchase property through other investment models and provide high quality housing nationally. Equally exciting is the setting up of Let For Life, which will develop and host the first independent website of its kind for people with a disability who wish to find a home of their own. This innovation in property information for people with disabilities has been created and developed by the founding director of the Trust, Duncan Cameron. Of course you would expect no less from the man who had the knowledge and ability to undertake the technical programming of Money Supermarket, the first website of its kind, twelve years ago.

The majority of people with disabilities do not get the chance to access normal housing through the methods used by the general population. This means that people stay with family far longer, live with people they do not wish to live with, move under crisis situations or at the very worst end up in institutions such as assessment and treatment units for very long periods, often years. Some of these latter places are still NHS or private hospitals where people have no real home and very inappropriate medical interventions over many years and as we have seen by the Winterbourne shocking scenes, experience abusive treatment. 

We know that current websites such as Choice Based Lettings and property search engines such as Zoopla or Rightmove and housing application processes are not straightforward for people who have disabilities, particularly learning disabilities. When people finally find a property to rent in the private sector they find that Landlords often are not interested in offering their housing to people who have disabilities who receive benefits.

The Cameron Trust aims to change this short sighted attitude of the majority of private landlords. It will ensure that private landlords are aware of the merits of letting to people with disabilities, often who are reliable, long term tenants, particularly if they are offered and provided with the correct level of support to enable them to live safely and comfortably in the community.

If these lettings are also undertaken through organisations such as the Cameron Trust then it makes for a very attractive proposal for tenants, private landlords, commissioners and providers of services.

The website will launch in the Spring of 2014. Teams of programmers under Duncan Cameron’s guidance are working up the sites. It has been so interesting to see a technical way of logging and answering many of the enquiries that the Cameron Trust are already starting to receive (far better than my usual pad of A4 enquiries!) However as we know in this work we need to have the human response too and that makes this whole creative approach a very realistic, practical solution too.

The Cameron Trust now has offices in Wilmslow, courtesy of Duncan Cameron that are right by the train station. This is where the head office will be based but of course today a great deal of the work can be done using all sorts of tele-facilities. The Cameron Trust will however build on its work in the South West by employing housing workers nationally who will meet people and guide them through every step of the way and provide a housing management service locally. It may also offer a low level of support at first to see people settled in their new homes. If you are interested in finding out about any of these positions please contact me at the Cameron Trust. Jayne.knight@camerontrust.org.uk

The Cameron Trust employees understand the Housing and Care system and can speak easily and professionally with people with disabilities who need housing, commissioners of services, families, housing professionals and providers of support and care services. Along with the Housing and Support Alliance it has people who can advise on and deal with the whole raft of changes with the benefits systems, look for and lease or buy appropriate accommodation, develop partnerships to provide more housing and also provide homes, where necessary, for people with a range of needs including very high level needs. It is already talking to a whole range of investors willing to invest money or to offer property.

The Cameron Trust will concentrate for the first eighteen months of its work with people with learning disabilities who need support and care to maintain their tenancy. All the referrals for housing to the Cameron Trust will come through the Housing and Support Alliance referral system. People who refer will need to be full members of the Housing and Support Alliance to make those referrals. By the time the referral is ready to be nominated to the Cameron Trust for housing much of the work of the referring Authority will have been completed or will be in process. For any one wishing to move to another Local Authority area they must have the approval also of the hosting Local Authority.

One of the “tech solutions” is that we will also be able to collect information on the website about the demand for housing and the provision of available housing in areas. We will be gathering information about the numbers of people who expressed an interest in moving from one Local Authority area to another. This will give more information to the “ordinary residence” debate, an area of great concern of many Local Authorities but something that does prevent the free movement of citizens with disabilities nationally.

During the last three months it has become very clear that we need to work hard to get solutions for many of the people currently still in Assessment and Treatment units. I have been heartened by the meaningful responses now of the Government to make things happen for people who are still waiting to start new lives but are not moving very far forward in that struggle. This will be a major part of the work of the Cameron Trust and we hope to be able to inform members soon about any progress in that direction.

So meetings with solicitors are happening this week, the website is well on its way and the applications for registration are all being filed. Next stop launch in December so watch out for information on the website and up dated newsletters. Thank you to those members who have already sent in referrals and there will be final information at the H and SA National Conference where we hope to see you and hear about your experiences of getting housing and any good practice you may be able to share with us too.    


       

Monday, 19 August 2013

My Heroes - Learning Disability Week 2013

My older brother Graham has a learning disability. We never used this term when we were young -we always just thought of Graham as being a bit slow. I remember when he started school and was learning to read and I would sit on the sofa with him and my Dad while he painstakingly learned to read some of the basics. This gave me a head start and meant that I learned to read before I started school. It also meant that Graham grew up with expectations that he would do the same things as every other child his age.

Graham and I always went to the same school together and right up to when we went to secondary school, I never thought of him as being disabled. He was just a geeky, pain in the backside brother to me. He never got good reports at school but he just went though school at the same pace that I did.  I only knew that something was wrong when he got to secondary school. He spent his first year at secondary school failing miserably and by the time I joined him there, the school was insisting that he should leave and go to the local special school. My Mum spent many months challenging this- she knew that he would not be happy there and he had formed strong friendships that he would miss if he left his school. She won and he ended up staying at our secondary school.

My Mum is my original hero. I never appreciated at the time what she had done- this was 1980 in Australia where people were expected to do as they were told by the 'experts' (still are as far as I know...). She knew from personal experience of growing up in care what it was like to be different, to be discriminated against, and she was not going to have that for any of her children. It wasn't easy though. I remember the impatient teachers that humiliated him. I remember the taunts from cruel children. I got into many fights having to stick up for him. But ultimately it was the right thing to have done.

Sadly Mum died in 1982. Graham went on to get a job in a shoe factory, get a girlfriend and indulge in his passion for heavy metal. But without the constant love and attention my mother gave him, Graham's life descended into chaos and he developed alcohol induced schizophrenia in his early twenties and he has been unable to work ever since.  I often wonder what his life would have looked like had Mum been there to look out for him. I wonder what his life would have looked like if there had been good support out there for him and us as his family.

I see this incredible love and commitment in so many families that I meet and work with. The belief in their children and the unwavering commitment to help them have good lives, the constant fight, the humour, the anger, the despair. I wonder why we make it so hard for them. I wonder why we so often think that professionals know more than families do. I wonder why we don't see the sense (and economics) of investing in support for families, why we wait for crises and only step in with the best on offer at the time, which is often not good enough.

So in Learning Disability Week 2013 I am going to Celebrate Families with Mencap. They have asked people to nominate their heroes. I don't really think that families are heroes. They are just getting on and doing the best they can in the circumstances they have. But I have countless personal heroes that I have met over the years that I want to recognise this week....

So Happy Learning Disability Week to Michelle, Sheila, Jackie, Nik, Linnet, Ian, Caroline, Viv, Vicki, Jo, Lynne, Mark, Sara, Josephine, Cris, Michelle, Mrs Bedi, Mags, Lawraine, John, Stephen, George, Wendy, Avril, Melanie, Jo, Pippa, Sarah, Elaine, Julia, Sue, Charlie, Clare, Charlotte, Balwinder, Thurayah, Chris, Linda, Paula, Jan, Angela, Marcella, Susan, Robert and the many  others that my failing memory will not allow me to recall.  You are what makes me want to keep fighting. Thank-you.