Learning Disability Month June 2010

Last Updated on Saturday, 25 September 2010 14:34 Written by Clive Streeter Tuesday, 13 July 2010 17:02

I don’t know if people were aware that last month (June 2010), was Learning disability month & throughout the month various events took place throughout the country.

 

One of the events that I attended, through my job was Into My Own a production by the award-winning theatre group Hijinx, who are based at the Millennium Centre in Cardiff Bay. Each Spring, Hijinx tour a play for learning disabled and community audiences within Wales & England.

 

This years production Into My Own included cast members with learning disabilities. Hijinx also runs full Outreach department providing workshop opportunities and training for many different groups and forum theatre for conferences. As well as Odyssey Theatre, an inclusive community participation project which gives people, of all abilities the opportunity to develop drama skills in weekly workshops.

 

In to my own was a production about a middle aged woman called Anne who lives with here Mum, they both look after each other. They are settled in their routines and comfortable with their lives. Anne dances while Mum keeps her safe and makes toast, but Mum is getting older and less able to cope. Mum is suddenly rushed into hospital & their cosy world is turned upside down and there are no plans arranged for what would happen with Anne if anything happened to her Mum.

Her brother Ken lives miles away and has a family of his own, a demanding job and no space for Anne, but his friend Terry knows what to do. Terry is a social worker who introduces Anne to Dilys who is an inspiration ~ a free spirit who loves her independent life. Dilys is full of movement and colour.

Can Dilys help Anne embrace a new and exciting life, doing things she would never have dreamed of before?

Into My Own was a story for everyone, about families and friendships, stepping into the unknown but has particular relevance to people within the learning disabled community.

 

If anybody has the opportunity to see one of there production when then they are touring I would recommend it. Their next production is aimed at the community audiences within Wales & England. & will be on touring from the 21^st September 2010 until 11^th December 2010.

Sue's Law: 'Love is stronger than blood'

Last Updated on Wednesday, 09 June 2010 16:52 Written by Administrator Wednesday, 09 June 2010 16:49

 

If you were deemed to be too frail or unwell to make decisions for yourself, would you want your nearest and dearest to make the decisions for you? Would you want the person or people who know you best to ensure that your wishes are carried out? And if you are not in a legally recognised relationship, do you expect to be able to decide for yourself now exactly WHO your nearest and dearest are?

Sue W, who died in February 2010, had been estranged from her biological family for many years and had no long-term partner, but like many LGBT (and other) people, Sue had a close and loving family of friends. After developing MS, Sue thought she had made all of the arrangements necessary to ensure that she spent her final years in the way that she wished. Sue bought and adapted her ideal home, drew up a Living Will and Last Will & Testament with the help of a solicitor, and appointed a friend to make health care decisions on her behalf. Sue also ensured she moved close to a specialist care home for people with MS, which she used for periods of respite and intended to move into if she became unable to live at home. Then she continued to lead an active and happy life, living independently with the support of care workers.

However, after entering hospital with an infection unrelated to her MS, Sue was forcibly removed from the ward and taken to a Christian old people’s home in a town miles away, deemed to be mentally incapable of making her own decisions. Her wheelchair was taken away on ‘health and safety grounds’ and never returned to her, leaving her confined to bed. Sue, of Jewish heritage and Buddhist leanings, was aged just 50. Although the authorities had Sue’s phone, her address book and her Living Will, her friends were never contacted and took months to locate her, and Sue’s wish to be in her preferred care facility was ignored. In the meantime, legal responsibility for Sue was passed to her estranged father, who was also given control of her finances despite not being named in her will. According to the Mental Capacity Act, as Sue did not have a legally recognised partner, her nearest biological relative was given complete control over her future. Despite all of her careful arrangements, Sue’s friends had no legal status at all. They were denied access to many complaints procedures on her behalf; and at one stage attempts were even made to ban them from visiting her.

Sue’s friends and Regard campaigned for two years to free Sue, a campaign that encompassed everything from the local authority and primary care trust complaints procedures and the relevant Ombudsmen to the Equality and Human Rights Commission, the Commission for Social Care Inspection and the Court of Protection — all to no avail. Sue was only moved to the hospice where she later died after her father finally dropped his opposition, by which time he had also binned her possessions and sold her home.

We believe that everyone not in a legally recognised relationship should have the right to define who is closest to them. There is no legal definition of ‘next of kin’, which is why the Mental Capacity Act uses the ‘nearest relative’. We believe that the law should be changed to allow ‘single’ people to name their next of kin via a simple legal declaration.

Sign the petition at http://petitions.number10.gov.uk/SuesLaw/

---

FAQs about Sue’s Law

Why does this matter? Anyone can suddenly become so unwell that the authorities consider them to be incapable of making their own decisions. Often this happens when a dispute arises between the ill person and the authorities over what care and treatment they receive. If no one who knows you well has the power to intervene, your wishes are unlikely to be respected. And in today’s world, the person who knows you best may not be a relative — if indeed you still have close family alive. Also, if your parents or siblings are elderly or frail themselves, they may not be able to represent your wishes adequately — or you may not want to burden them with the necessary decisions. An adult can legally emancipate themselves from their biological relatives through marriage or civil partnership. We believe that ‘single’ people should have the same right. The current arrangements for Lasting Power of Attorney are too complex and expensive to be accessible or suitable for most people’s needs, particularly but not only for disabled and older people, and are designed for situations where people have advance warning of ill health.

Is this just an LGBT issue? No. It affects everyone who is not living in a legally recognised relationship. However, LGBT people are more likely than others to experience physical or mental health problems because of the impact of homophobia and HIV. LGBT people are also less likely to live in traditional family units and are more likely to live a considerable distance from their biological families. All of this means that LGBT people are more likely to use social and health care services than others. LGBT people are also more likely than others to make different lifestyle choices to the ones that their biological families would make for them.

I have close family and get on well with them, so why does it affect me? The Mental Capacity Act defines ‘nearest relative’ very clearly, starting with parents. If your parent or parents are elderly, you might prefer a sibling to be your next of kin. Or you might want one sibling to be your next of kin but not want your other sibling to be involved. Or you might want to ensure that your family have the support of a friend or non-legally recognised partner when deciding on treatment and living options on your behalf.

How would it affect inheritance? We are not proposing that this affects inheritance laws. Rather, we are saying that, if you can decide whom to leave your money to when you die, you should certainly be able to decide who has the right to influence your lifestyle, care and treatment while you are still alive.

How would it affect carers? Many disabled and older people, particularly but not only LGBT people, have unpaid carers who are not their partner or their nearest biological relative, but who know them better and are closer to them than anyone else. This would enable people to nominate their carers as their next of kin if they wished.

Could I nominate more than one person? This will be up to the Government, but we think you should be able to nominate up to three people. This would enable people to appoint a combination of relatives/friends if desired.

Working with the Care Quality Commission

The CQC is the new regulator and inspector of health, social and mental health services in England . It replaced the three separate Commissions that worked in these fields, including the Commission for Social Care Inspection (CSCI), from April 2009. Phil Gosling has been representing Regard on a number of consultations concerning CQC’s use of enforcement powers, involvement of service users, and registration standards.

Update – Phil has been appointed to the CQC’s new Voices for Equality and Human Rights Group. If you have any concerns around equality and human rights issues in your experience of care services, you can let Phil know at This e-mail address is being protected from spambots. You need JavaScript enabled to view it (but sorry, Phil cannot help with individual cases).


Equality Bill

 

Regard is responding to the lack of harassment provisions in the Equality Bill. Click the link to find out more: Equalities Review


Brighton LGBT Disability Action Group

The first meeting of this group took place on 14th January 2009. The purpose of the meeting was to launch the Action Group as a partnership between the Brighton and Hove Federation of Disabled People (FED - www.bhfederation.org.uk) and Spectrum (Brighton's LGBT umbrella group - www.spectrum-lgbt.org) to encourage development of a group in Brighton and Hove that caters for the needs of people who identify as both LGBT and disabled.  Joanna Rowland-Stuart our Trans Liaison was there to formally represent Regard, and other Regard members were present. The notes of the meeting are at LGBT Action Group: Discussion Summary

The meeting was very useful and our next meeting will be on 18th February 2009 (times and venue to be confirmed). If new people are interested in attending please contact Joanna ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) or Alex Hawkey ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) who is the Involvement Officer for the "Fed".


London Lesbian and Gay Film Festival

We were disappointed that there was still very little access for disabled people at this year's festival at the National Film Theatre (NFT). Even though we wrote to the festival organisers last year. The festival is a chance for visitors from throughout the UK, to get together as well as showing the best selection of LGBT films available. We are fed up with not being able to get tickets because we are wheelchair users, or not being able to access the films because we are BSL users, or need audio description where none exists, and/or need to be able to book seats near the front in order to see or hear and none have been reserved for us. Because of this, we wrote to all of the Trustees of the British Film Institute (BFI), who run the NFT, demanding better access. We have now had one very positive meeting with them about improving access to next year's festival, and more are planned. If you would like to be part of the group meeting with the BFI, or would like to know more about our work to improve access at the festival, then please let us know.

 

Equalities Law

We are currently in the process of responding to the Green Paper on a new single Equality Act (the deadline is 3 September 2007). Our response will be available here from September, but email us if you would like a copy sent directly to you. In 2006 Regard has responded to the Interim Report of the Equalities Review. The Review is intended to set the agenda for tackling all social inequality. Click here to read a copy of our response. Our Co-Chair Ju Gosling also spoke at the London consultation event organised by the Cabinet Office, and on a panel at the annual State of London debate.

 

Social Care

Regard is working to raise awareness of the needs of disabled LGBT people amongst social care providers and the Government. In the summer of 2005 we made a detailed submission in response to the Government's Green Paper on social care - click here to read it.

In September 2005 Ju Gosling and Phil Gosling (no relation!) were asked to represent Regard on the Commission for Social Care Inspection’s Equality and Diversity advisory group. CSCI is responsible for inspecting all residential care facilities, as well as social services departments. Ju and Phil are both service users, and will continue to raise issues relating to LGBT people who receive any form of social care. The group meets quarterly, and Ju and Phil will report back via e-mails and the website.

 

Policing

In 2005 Ju Gosling, Julie Newman, Lee Elliott and Charley Hasted represented Regard at a consultation meeting on policing the LGBT community. One issue we highlighted was the fact that many disabled LGBT people experience high levels of homophobic harassment and abuse, due to their isolation as well as their perceived vulnerability. On an ongoing basis, Kirsten Hearn, our LGBT liaison officer, is also a member of the Metropolitan Police Authority.

 

Access to Pride

We have been working to create a 'Pride access template' for regional Pride organisers. This is because based we have lots of experience while we have been working with London Pride over the past 15 years. You will be able to get this from our website soon. If you are involved with a regional Pride, let us know and we will send you a copy.

Unfortunately, Pride London has become more and more uncooperative over the past few years. Access issues have become less and less important. Our 'needs' have been based on the Medical Model of Disability and that we need 'looking after' (St John's Ambulance were asked to provide the access stewards this year!) Over the past few years a big 'festival' for Pride has become too expensive to put on. Many of the people previously involved with Pride Festival have become involved with the march instead. Before this, the march was under the direct control of the community. We are now putting together a report about the access problems at London Pride, which seem to be getting worse. Regard will be presenting this to their funders and sponsors to ask for their support in improving access again. If you have any experiences of London Prides 2006 and 2007 to report, good or bad, then please let us know as soon as possible (our contact details are at the end of this report).

 

Access to ‘the scene’

We soon hope to be launching a new campaign to open up ‘the scene’ to disabled members of the LGBT community. We believe that the LGBT community has a much higher proportion of disabled members within it than the population at large, due to the physical and emotional effects of homo/transphobia, together with HIV. We also have an ageing community who have access issues too. However, very little progress has been made to open up access to LGBT community venues, despite the implementation of the Disability Discrimination Act. As a result, many disabled and older LGBT people are isolated from their community and are more vulnerable to homo/transphobia as a result. We will initially be campaigning in London, in conjunction with the disability organisation Artsline, but will later be broadening this to cover the country as a whole. If you would like to get involved, please contact Regard.