Lessons from personalisation Alex Fox, CEO Shared Lives Plus SharedLivesPlus.uk

1. Lessons from personalisation Alex Fox, CEO Shared Lives Plus www.SharedLivesPlus.org.uk http://alexfoxblog.wordpress.com Karl and Clare with carers Blossom and Mike, at their wedding, before moving to live independently

2. Who are we? 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.

3. 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.)

4. 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

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

6. 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 2010. • 25% (44% of the cash value) are Direct Payments (ADASS 2011).

7. 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.

8. Huge successes • 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.

9. Hugechallenges • 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.

10. Ways forward: market diversity • 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.

11. Ways forward: • citizen ownership & leadership • 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 • CHANGE’s job-share model, working with parents with learning disabilities. • Co-op and mutually owned models of service delivery. • Service user, family and citizen led commissioning. • Stamford Forum/ Leeds Council neighbourhood network model. • Local Area Coordination (LAC) and other Asset Based Community Development (ABCD) approaches.

12. Ways forward: • family and community • 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.

13. Contact details Alex Fox, CEO, Shared Lives Plus, alex@SharedLivesPlus.org.uk www.SharedLivesPlus.org.uk; 07738641897 http://alexfoxblog.wordpress.com Twitter: @alexatnaaps