Working together for better lives: Challenging ideas, passionate debate and vital information were generated at recent conferences
Legal and housing rights in a context of cuts
The hall was packed for Community Living’s eighth adult social care law seminar, Preventing Melt-down in Adult Social Care, held in March in Manchester, writes Rose Trustam. Belinda Schwehr, Community Living’s legal correspondent and founder of CASCAIDr legal charity, led the day with input from Mathieu Culverhouse from sponsors Irwin Mitchell solicitors.
Highlights
Key legal rights People should read the care and support statutory guidance so they can distinguish between duties and powers, shown in terms such as ‘must’, ‘expected’, ‘should’ and ‘may’ (https://tinyurl.com/care-sup-stat).
Can people get legal help? Mathieu Culverhouse of Irwin Mitchell Manchester said qualifying individuals (eg those who rely on benefits) can still get legal aid and cases can be brought by a litigation friend or family member. Crowdfunding to pay legal costs has been used by CASCAIDr.
Supported housing or residential care? The consequences of the Alternative Futures Group judgment in 2004, which said care homes could not be deregistered and turned into supported housing tenancies when personal care and accommodation were tied together, were discussed. Providers may put tenancies at risk and end up with a care home if they carry the cost of voids in shared supported housing rather than the local authority or company, or if the providers of accommodation and care are linked. People in shared supported housing could lose their entitlement to a personal budget if they have to buy care from the company that provides their home.
Budget cuts Statutory guidance says that, while a council can consider its finances when making decisions, it should not set arbitrary caps on costs and it should also choose the option that delivers the best value, not the cheapest option. How money is allocated should be transparent, rational and clearly explained before care planning starts; the amount needed cannot be cut just because of budget cuts.
Moving to save money People cannot be moved to save the council money because expecting them to leave a settled home would be a breach of their human rights. Whether they are living in a care home or supported housing, their human rights are engaged, and they have to be consulted and considered carefully, over and above any annual review or reassessment. If a person is mentally incapacitated, their best interests consultees must be involved, including the provider according to case law. A local authority would be in breach of its duty to promote an individual’s wellbeing if it did not assess this in each case.
Choosing a provider While there is no right to pick who provides support where this is commissioned, a person receiving a direct payment can choose any provider. They do not need to have full mental capacity to request a direct payment – knowing they want one and will need help with it should be enough. Most councils provide help to manage a DP as part of their wellbeing powers, although they do not have to. If an authority turns down a request for DP, it has to give its reasons.
Guides for people with learning difficulties and their families Irwin Mitchell has issued Meeting the Challenge – a good source of legal help, which includes advice for those stuck in assessment and treatment units. It can be downloaded from https://tinyurl.com/Irwin-meeting.
Tackling isolation, forging friendships and staying safe
Belonging was central to the North West Regional Self-Advocates’ annual conference in March in Blackpool, which had the theme What About Love, What About Trust, What About Us? writes Rose Trustam.
Highlights
Isolation Isolation was seen as a major consequence of service cuts. Lucy Hamlin from Lancashire’s U-Night group described how people can be lonely while surrounded by others, whether they are in a room, a house or a street. They need to know their assets and strengths and find connections in their choices.
Delegates wrote down what belonging meant to them. Only 3% of people with learning disabilities live with a partner (compared to 70% of the population). Six hundred and eighty people in the north west had addressed this in past two years; many formed friendships and one couple moved in together.
U-Night offer co-training (given by two people, one with a learning disability and one without) on dating, forging relationships and staying safe, which increases confidence.
Following U-Night’s lobbying, the Care Quality Commission now include questions about how relationships are supported when it carries out inspections.
Relationship support Kath Bromfield and Darren Hayward from Manchester People First spoke on their Small Sparks project. This provides small grants to help projects develop ideas to help people connect and build relationships. Hayward spoke passionately about the need for people to have control and a voice, as well as others in their lives to avoid isolation.
U-Night group: http://unightgroup.co.uk Manchester People First: www.manpf.org/index.html
Providing support, not taking over
Learning Disability England held its inaugural conference, with the theme of the Challenge of Change, in Birmingham in December 2017, writes Jo Clare.
LDE had been launched only six months previously in June 2016, with the strapline Stronger, Louder, Together. It was founded by self-advocate Gary Bourler and Alicia Wood, former chief executive of the Housing and Support Alliance.
The event showed LDE had the hallmarks of an organisation that was still young and excited about its development and potential, but already coming of age and starting to realise its vision in the way that it did business
Karen Kirkpatrick, chief executive of Keyring and chair of LDE, asked in her conference address: “How can organisations back the ideas of people with learning disabilities without taking over?”
Answers came from models of good practice exemplified throughout the day – including a well-received presentation from Angela Catley from Community Catalysts – and the conference itself was a great advert for backing people without taking over.
Gary Bourlet looked at the extent to which people with learning disabilities were leaders, presenters and actors on the main stage at the event. He considered whether this matched LDE’s ambition for self-advocates to have a direct and authentic voice in and be at the centre of the movement for change.
This sense of voice was mirrored by lots of good-natured heckling, witty banter and spontaneous speaking out from people with learning disabilities; this demonstrated that, when self-advocacy is given the support, stage and status that it deserves, it can become infectious and spread.
Most of the day’s content, including sessions on supporting employment and staying safe online, flowed directly from the known concerns of people with learning difficulties and were correspondingly popular. Interest in the supported loving session, for example, was so great that people were hanging off door frames trying to get a look in.
At least as striking were the presence and leadership of family advocates, professionals and providers. They did not take over or pull strings from the gallery nor fall short of providing the advocacy, advice and information that is needed to support the challenge of change.
As well as insightful contributions from family carers such as Wendy Burt and Liz Wilson, there were invaluable presentations and sessions on subjects such as personal independence payments, funding for housing and sleep-in payments.
Professor Chris Hatton reported on what is happening to people in assessment and treatment units and inpatient services. For those who are still being detained and segregated inappropriately, as well as for those who are so disabled that self-advocacy is not possible, support from family carers with experience of this situation and advocacy by professionals and organisations are crucial.
If this conference is a mark of LDE’s intent, then at long last the sector has the potential for a united movement for social change – with people with learning disabilities at the centre, not the edges. LDE is not just one voice of learning disability but many voices and, so far, is promising to live up to its strapline, Stronger Louder Together.
www.learningdisabilityengland.org.uk
Care assessment guide, capacity in religion and a call to listen to parents… Advocacy Focus celebrated 20 years of work with its Breaking Barriers conference in Preston in March, writes Rose Trustam
Highlights
Care assessments Advocacy Focus launched its Justice for LB toolkit, which was developed in consultation with Lancashire self-advocates. This gives professionals tools to help people with learning difficulties become more involved with their care assessments; it also provides information and guidelines about working with people who have learning disabilities or communication or cognitive issues. Download the toolkit from: www.advocacyfocus.org.uk/justiceforlb.
Capacity A barrister led a workshop that examined a court of protection case about religious observance (IH (Observance of Muslim Practice) [2017] EWCOP 9). Should religious practices of removing body hair and fasting be followed with a young Muslim man with no speech and a history of challenging behaviour?
The court ruled, with intervention from a psychiatrist and a cultural expert, that neither the fasting nor the hair removal were necessary or in his best interests. However, it was right that he should join in Eid and family celebrations, which he enjoyed.
The cultural expert clarified that, as the young man did not have legal competence, there was no obligation to carry out religious rites and that he would be seen as being in a perpetually heightened state of spirituality (a comfort to the parents).
The case showed that where there is anxiety about racism or discrimination, resolution can be reached by following the Mental Capacity Act and acting in the person’s best interests.
Stephen Neary case Mark Neary (pictured) told of his shocking journey of 350 days to get his son Stephen home after three days of booked respite. Listening to parents remains a huge issue. For the story, see https://rightsinfo.org/give-back-son-human-rights-brought-steven-neary-home; Mark Neary’s blog is at https://markneary1dotcom1.wordpress.com.
