Lives Plus.org.uk Lessons from personalisation Alex Fox, CEO Shared Lives Plus Karl and Clare with carers Blossom and Mike, at their wedding, before moving to live independently

Lives Plus.org.uk Shared Lives Plus is the UK network for family-based and small-scale ways of supporting adults. Our members are Shared Lives carers and workers, Homeshare programmes and micro-enterprises. Shared Lives is UK wide and used by 15,000 people. The micro-enterprise sector is much less well established. Shared Lives Plus was established in 1992 and has 4,500 members UK-wide. Community Catalysts: our sister Community Interest Company, helping councils create micro-enterprise friendly areas. Who are we?

Lives Plus.org.uk Pre-Community Care reform A sector characterised by: disabled people warehoused in long-stay institutions; a medical model of disability and low expectations of people with long term conditions; ‘one size fits all’ state social care services, centrally planned and organised, with little individual or family control. But also: community and whole-family social work approaches huge contribution from unpaid family carers (was and remains poorly recognised and valued by the state.)

Lives Plus.org.uk Community care reforms The Griffiths Report (1988) and others led to: closure of nearly all long-stay institutions for people with disabilities huge shift of care for people with disabilities & mental health problems, into community-based settings But: model remained individual (not family / community) focused needs, not asset-based led by professionals and decision makers, not people

Lives Plus.org.uk Putting People First 2007 Four equal quadrants: 1.a universal offer of advice and information to help people make informed choices; 2.a focus on developing inclusive and supportive communities (‘social capital’); 3.a focus on investing in prevention; 4.introducing choice and control through the introduction of personal budgets.

Lives Plus.org.uk Putting People First 2007 Of the four quadrants, only number four - personal budgets - became truly embedded: 340,000 personal budget holders; £1.57bn in personal budgets; up 100% on % (44% of the cash value) are Direct Payments (ADASS 2011).

Lives Plus.org.uk Supply as well as demand What of the intended culture change: individuals in control of their services and their lives, living in and contributing to their chosen relationships, families and communities? Only partially facilitated by the mechanism change of personal budgets and Direct Payments. For some people, life has been transformed out of all recognition, often via PAs (new market of provision). But for some, the changes represent more hassle, risk and red tape, without real increase in choice (no new providers). We need an increasing focus on relationships, community participation, volunteering, employment.

Lives Plus.org.uk Near eradication of long term, institutional care for disabled people (but older people’s residential care market growing); Principles of choice, control and independence for all service users firmly embedded in sector’s values; The rise of user-led or user-owned organisations People involved in decision-making at every level; Increasing satisfaction of the majority of users and families; Some examples of a more plural and creative market; Some community development & asset-based approaches; little evidence of increasing fraud or inappropriate spending. Huge successes

Lives Plus.org.uk Misunderstandings of values and aims of personalisation perverse implementations of the new mechanisms and everyone focused upon the money; variable uptake of personal budgets and Direct Payments Destabilising the provider market can lead to reduced provider diversity, loss of small/ niche providers; Increased pressure upon unpaid family carers leading to poor health and unemployment; Low employment rates remain largely untouched; Increasing isolation for some people living ‘independently’ (alone); and (rare) instances of hate crime. Huge challenges

Lives Plus.org.uk Focus on supply as well as demand – market build E.g. develop and ‘scale out’ micro-enterprises Local people working with/ for other local people May be led/ owned by service users/ families. Ways forward: market diversity

Lives Plus.org.uk Co-production is often influencing someone else’ service – increasing numbers of people want (shared) ownership and responsibility for making a contribution. Not just User-Led Organisations (ULOs) but citizen-delivered services and interventions o CHANGE’s job-share model, working with parents with learning disabilities. o Co-op and mutually owned models of service delivery. Service user, family and citizen led commissioning. o Stamford Forum/ Leeds Council neighbourhood network model. o Local Area Coordination (LAC) and other Asset Based Community Development (ABCD) approaches. Ways forward: citizen ownership & leadership

Lives Plus.org.uk The ‘unfinished revolution’ (CSJ): communities involved, not just ‘community-based’ traditional services. Professionals need to share power and share the risks. For instance: Shared Lives: registered Shared Lives carers involving family, friends and neighbours in support. KeyRing: a community-based volunteer who helps people to form and link up networks of support. Partnership with families: training, breaks, information sharing (with permission), family group conferencing. Ways forward: family and community

Lives Plus.org.uk Alex Fox, CEO, Shared Lives Plus, Contact details