Come out of your comfort zones and work alongside people

Rosemary TrustamDespite the pressures from cuts, Rosemary Trustam heard some inspiring talks urging delegates at the H&SA winter conference to build on the good work some agencies are doing

Why was no one shocked at a recent diversity conference that no mention was made of the biggest minority – people with learning and other disabilities? Independent journalist Ian Birrell asked this question in opening Housing and Support Alliance’s (H&SA) winter conference which he chaired. People can’t overcome the increasing barriers to employment, rising hate crime, social and domestic isolation and ostracisation unless they are part of their communities, he said.

Ian has a 23 year old daughter with a complex and profound disability who has a good network of support. Referring to the Justice for LB campaign, he suggested challenging behaviours are rather the result of, not a reason for, Assessment and Treatment Units. Despite a challenging context, he said, there are many good people in local authorities, charities and the community building good things, and today is about bolstering that work.

Pages of forms to ‘prove’ you’re looking for work, jargon-filled letters and a lack of disability friendly work environments stop people getting work, said Gary Bourlet of People First England. People want to work but find themselves without help stuck in poorly repaired bedsits. People need support with jobs, housing and to be part of their community. The fight for the rights of disabled people and the retention of human rights laws should continue, he said.

People have to come out of their comfort zones and organisational and professional boundaries and come together alongside and behind people and families urged Alicia Wood, CEO of H&SA.

Tom Noon of Cordis Bright warned of darker days to come before there’s any change in government, and fewer people would get social care funding in future. Steve Broach, a barrister with Monckton Chambers, pointed out that the law trumps local authority policies and lack of resources. Nevertheless, Tom Noon’s figures looking forward  at changes in need were a sobering reminder of the enormity of the planned cuts and the pressures from an increasing ageing population and the ‘living’ wage.

Under the Care Act, Steve Broach reminded the audience, disabled people still have the right to have their eligible social care needs met in full, regardless of the cost, although if there are two ways of genuinely meeting the person’s needs, the state can choose the most cost-effective way. If there is a legal duty to provide – for example – the personal care a disabled person needs to lead a dignified life, then the state can be made to provide it.

He cited the Human Rights Act as a powerful weapon, illustrating this with two people fronting the ‘Act for the Act’ campaign – Jan Sutton, a disabled woman whose use of it resulted in a package of care supporting her to live with dignity and Mark Neary where it helped get his son Steven home. He said the UN Convention on the Rights of Persons with Disabilities (UNCRPD) is being given ever greater weight citing how it helped find unlawful discrimination against disabled children in hospital who lose their disability benefits after 84 days.

Rights are even more important as disabled people are under sustained attack from government policies that cut the specific fund to support independent living, undermine entitlements to social security, reduce access to legal aid and by reducing their budgets make it virtually impossible for councils to comply with their statutory duties. He suggested legal challenges may soon come from local authorities without enough money to comply with their legal duties. Already two councils, whose eligibility criteria were previously critical only, went to court and once the court granted permission for the claim to proceed, the government backed down and provided funding.

Steve also reminded people that legal aid is still available to bring judicial review challenges to secure people’s rights. The new right to advocacy under the Care Act, was found by Community Care magazine (1) to be very underused, even in Reading council which says it is actively promoting it.

“It is unacceptable for Parliament to pass laws and the government to sign treaties creating new rights, and then for funding to be cut to make it impossible for local bodies to realise them”, he said. Over the next few years we will need to use the law to enforce the extensive rights disabled people now have, he suggested. By bringing cases to show the law isn’t being respected, the funding needed must follow – that’s what the rule of law requires.

“ ‘Independent living’ seems to be packaged into a largely mechanical exercise involving budget, staff and space, without giving life any meaning”, said Sarah Ryan, Connor Sparrowhawk’s mother. Even amongst pockets of good practice, she sees lots of learning disability jargon, little talk of aspiration, hope, love, imagined futures or work, but instead, ‘supported non lives’.

She challenged providers and commissioners to, “chuck away the learning disability lenses and engage with the people you work with as people, and if budgetary or bureaucratic constraints prevent them from doing this right, they should shout about this, just as if their family member was leading a state sanctioned impoverished life”.

Despite the government’s sign-up to the UNCRPD principles of independent living and inclusion(2), its statements of intention have weakened from ‘determined to deliver’ in Valuing People Now 2009 (3) to an ‘aim for people…. to live independently when possible’ in 2015 No Voice Unheard No Rights Ignored(4), noted Chris Hatton of the Centre for Disability Research at Lancaster University.

Independent living should be about being the author of your life, he said, and yet a lot of money is spent stopping independent living – on residential care and inpatient services; supported living with high rents and tied support; benefits to stop people working; personal budgets not giving people control over what they spend it on and not trusted to spend it well – and health services that kill people. People with learning disabilities seem to be exploitable commodities who rarely see or control most of this, and are at the mercy of the care markets. He suggested resources could be better spent and that we can’t afford not to support independent living.

Chris produced figures to show that inclusion is going backwards: fewer children are in mainstream schools, only 6 per cent of adults in paid work, mostly under 16 hours, people are disproportionately sharing or living with families compared to the general population and personal budgets increasingly managed by providers. With changes in eligibility for support, he sees protection being withdrawn from vulnerable people who are left unprotected ‘outside the stockade’, unemployed, ill or in trouble with the law, suggesting 70,000 people with learning disabilities are now not known to services but will add to costs when they turn up at A&E or prisons.

His challenge was for the state to stop cost-shunting, start funding as a whole and give long-term guarantees; put people and families in charge; stop conditionality and introduce enforced rights (as set out in the LB Bill); persuade local authorities that bigger isn’t always better and small is beautiful; for homes not units; people not systems; and start independent living, learning from each other about what works.

Sally Warren from Paradigm saw hope in ten agencies committed to challenging themselves where they see an  ‘integrity gap’. She asked people to imagine how they would feel if they never got out to see their friends, had to share with three people they can’t stand, and if someone they didn’t know did their personal care….. “If it’s not good enough for us, it’s not good enough for people with learning disabilities”, she said.

Helping people to have an ordinary life is about having life’s ups and downs, about their freedom to have support when they need it, the opportunity to learn from mistakes, to choose where and with whom they live – the basic human rights we all take for granted.

Laura Broughton illustrated this with her experience of Choice Support’s service which helped her move to her own flat. She now loves it but it took five years to get used to. She has 20 hours per week to help with domestics and to get out and about with her seizures supported by assistive technology, Mum on alert and a smart alarm to remind her to take he