Mansell 2 Services for people with learning disabilities whose behaviour presents a challenge Jim Mansell

Overview Analysis Service models Commissioning Conclusion

Analysis

Typical problems  Community placements break down  Out-of-area placements increasingly used  Poor quality institutional solutions persist  Care planning overwhelmed by crises  Costs increase while quality declines

Reasons for these problems  Amount of challenging behaviour depends on service competence  Most placements can only support people without problems  There is not enough planning ahead for individuals

Action needed now  Increase capacity of local services to understand and respond to challenging behaviour  Provide specialist services locally which can support good mainstream practice as well as directly serve a small number of people with the most challenging needs  Replace low-value high-cost services with better alternatives  Avoid increasing the burden on family carers by reducing levels of service

Service models

 Supporting people living with their family  Supporting people in other accommodation  Education, work and day opportunities  Access to other health and social services  Specialist support to services

Supporting people living with their family  Re-examine use of residential schools away from people’s homes  Provide practical support  Equipment  Advice and training  Staff support to work with the individual  Short breaks available to every family

Supporting people in other accommodation  Best model likely to be support to enable people to live in ordinary housing  Direct payments and individual budgets should be more widely available  Stop using services which are too large to provide individualised support; serve people too far from their homes; and do not provide people with a good quality life in the home or as part of the local community

Education, work and day opportunities  Everyone should have access to innovative day opportunities, further education, supported employment and other day opportunities  Commissioners should take the lead in developing a much wider range of alternatives to day centres

Access to other health and social services  People have the same right of access to mainstream health services as the rest of the population  Mental health services available to the whole community should increase their ability to meet the needs of people whose behaviour presents challenges and who have a diagnosed mental illness  Psychiatric hospital admission only for short- term, highly focused assessment and treatment of mental illness

Specialist support to services  Specialist multi-disciplinary challenging behaviour support teams are essential  Make commissioners, managers and professionals work together to ensure that advice is both practicable and is acted upon  Emergency support available 24 hours a day, seven days a week  Budgets to fund a much wider variety of interventions as an alternative to placement in special units

Commissioning

 Commitment  Agency responsibility  Value for money  Service development  NHS role

Commitment  Cornwall demonstrates importance of focus and commitment  Reasons why this should be a priority  These individuals have the greatest needs for services  Quality services achieve marked improvement  Failure to develop local services threatens the policy of community care

Agency responsibility  Partnership working established in some areas  Problems remain:  Unilateral withdrawal of NHS finance  Reduction of Supporting People finance for individuals with relatively high needs for support  Continued use of residential special schools a long way from home  Government improving coordination between departments

Value for money  Need a person-centred, comprehensive view of benefits and costs  Take account of hidden costs of failure to develop local services

Service development  Make sure every person whose behaviour presents serious challenges has a proper person-centred plan  Build capacity in the local system, rather than waiting until crises occur  Strengthen commissioning to combine expertise about challenging behaviour with the ability to actually develop the services needed

NHS role  Keep contributing the money needed for joint work  Not undermine strategy by commissioning poor-quality services themselves  Continue to provide professional support to sustain good practice in community  Provide short-term psychiatric assessment and treatment, but only as part of an integrated pathway of care for the individual that gets them back into the community  Enable fair access to health services for people with learning disabilities whose behaviour presents a challenge to services

Conclusion

The right strategy  Only commission services that prevent challenging behaviour developing or getting worse  Develop effective local services for people presenting the most severe challenges  Replace low-value high-cost services with better alternatives  Avoid increasing the burden on family carers by reducing levels of service

What should councils do now?  Replace procurement with service development  Combine expertise with authority to actually develop services  Think about people not units

Two examples  4 young men with mild learning disabilities, mental health needs and substance abuse problems  From out-of-county placements in 2007 to individual flats supported by voluntary sector outreach support  Cost in first week £7400; cost 2009 £3970  2 young men with severe learning disabilities and serious challenging behaviour  Secure units in 2001 at c£2900 per week each  Now sharing a house with skilled staff support  Costs now £1175 per week

What works?  Building support and accommodation around people, not setting up ‘units’  Working with individual, family, service provider  Sticking at it over the long haul (working through difficulties)  Focusing on the quality of day-to-day support from well-matched and skilled staff

Conclusion  Critical factor is to change commissioning to build and sustain the capacity to meet the needs of people in each area