Raising our sights: services for adults with profound intellectual and multiple disabilities Jim Mansell

Overview  Introduction Definition, numbers, the challenge facing families, prejudice, discrimination and low expectations  Raising our sights Personalisation in action, elements of good services, extending good practice, specific obstacles  Resources and monitoring  Conclusion

Definition Adults with profound intellectual and multiple disabilities: have a profound learning disability and have more than one disability and have great difficulty communicating and need high levels of support with most aspects of daily life and may have additional sensory or physical disabilities, complex health needs or mental health difficulties and may have behaviours that challenge

Numbers  16,000 adults with profound intellectual and multiple disabilities in England  Number increasing 1.8% each year to 2026, when total number just over 22,000  In an ‘average’ area in England with a population of 250,000 number of young people with profound intellectual and multiple disabilities becoming adults in any given year will rise from 3 in 2009 to 5 in 2026

The challenge facing families  Very high levels of support needed  Not much provided  Services have to be found, educated and coordinated  Not enough services that can support people with profound intellectual and multiple disabilities well

Prejudice, discrimination and low expectations  Families given extremely negative prognoses  Services denied because person deemed ‘too disabled’ to be coped with  Unthinking application of standard rules or procedures  Risk-aversion  Money ‘better spent’ elsewhere  Low expectations

Raising our sights “In fact, the underlying prejudice that people with profound intellectual and multiple disabilities are not fully human is wrong. The daily experience of their families and others who care for them, together with a large body of research, demonstrates this. The protection of the law, including the Human Rights Act and the Disability Discrimination Act, extends to them too. And personalised services offer the prospect of a clear break with the low expectations of the past.”

Elements of good services  Good services are individualised and person-centred  Good services treat the family as expert  Good services focus on quality of staff relationships with the disabled person  Good services sustain the package of care  Good services are cost-effective

Specific obstacles to improvement  Housing  Access to community facilities  Health  Wheelchairs  Communication aids and assistive technology  Further education  Employment and day activity  Short breaks  Training  Clinical procedures  Funding

Resources 1  Small, well-defined group with evident need  No amount of investment would radically change the need for support for this group of people  Greater cost-effectiveness will come from getting the most out of those resources in terms of the quality of life experienced by them and their families, and through the reduction of harm and ill-health to them and their carers

Resources 2  Most work required mainly requires ‘reasonable adjustment’ to policies, procedures, rules and priorities  In general, these people require such substantial amounts of support that person-centred services are not likely to be significantly more expensive  Extra resources will be difficult to find but hard times should dictate the pace, but not the direction, of change

Monitoring  Government moving away from a centrally- directed performance management framework  Local bodies will be very important in continuing to scrutinise services and give a voice to people with profound intellectual and multiple disabilities and their families  Remains important that official bodies take account of the likely effect of demands they make on statutory and non-statutory agencies on the quality of life of adults with profound intellectual and multiple disabilities

Conclusion  The ‘personalisation agenda’ does appear to provide a better quality of life  There are a number of obstacles to wider implementation to which government and other agencies should attend  Shortage of resources may influence the speed with which the recommendations of this report can be implemented but should not change the direction of policy and practice