Ageing with a lifelong disability. Carol Walker Professor of Social Policy University of Lincoln

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1 Ageing with a lifelong disability Carol Walker Professor of Social Policy University of Lincoln cawalker@lincoln.ac.uk

2 Social policies for older people with disabilities The ageing of the population of people with disabilities The impact of discrimination and exclusion Living standards Employment Health and social care Living with ageing family carers

3 UK government definition of disability Disability should be distinguished from impairment and ill health Disability is defined as: disadvantage experienced by an individual resulting from barriers to independent living or educational, employment or other opportunities that impact on people with impairments and/or ill/health

4 The heterogeneity of the disabled population 1. Impairment type including variation by severity, duration, age of onset and the evolution of the impairment over time. Includes people with physical disabilities and intellectual disabilities. Some have both. 2. Socio-economic characteristics including variation by social class, region, ethnicity, age or gender. 3. Impact of different barriers every disabled person will face a different combination of attitudinal, physical and socio-economic barriers.

5 Numbers of people with lifelong disabilities in the UK 11 million disabled adults: 21% of the population 770,000 disabled children: 7% of all children (ONS, 2004) Increasing numbers of people report mental illness and behavioural disorders; lower numbers reporting physical impairments Prevalence of impairment differs across ethnic group; overall Black and minority ethnic groups less likely to report impairments Increasing life expectancy coupled with limited improvements in healthy life expectancy means an increase in age-related impairment and disability

6 Number of people who reported a limiting long standing illness or disability by age, UK

7 Percentage of the UK population who reported limiting longstanding illness or disability by age

8 Trends in ageing of people with lifelong disabilities Best available evidence suggests that the numbers of people with lifelong physical disabilities and intellectual disabilities surviving into older age will grow Based on the results of two government studies on the extent of disabilities (in 1969 and 1987), Zarb and Oliver (1993) predicted numbers would at least double over 20 years. People with intellectual disabilities over the age of 60 will increase by 36% between 2001 and 2021 (FPLD, 2008)

9 People with intellectual disabilities, England, 1999

10 Increasing life expectancy of people with intellectual disabilities Mean life expectancy vs. 20 in 1930s Half of all people with intellectual disabilities will live for as long as the general population Although people with intellectual disabilities have benefited from increased life expectancy, it is still lower than that of the general population 75 for men and 80 for women Evidence of avoidable illness and premature death among people with learning disabilities is a major cause of concern (DH, 2001)

11 The ageing of the population of people with intellectual disabilities Exclusion from mainstream debate on ageing. Lack of information on this sub group of the ageing population. Older generations of people with intellectual disabilities have higher levels of functional capacity than younger generations. This will change in the future.

12 The double disadvantage of older age and disability Policies relating to disability neglect the needs of older people who acquire disabilities in older age. The link between ageing and disability is seen as inevitable. Policies relating to older people tend to neglect the needs of people with lifelong disabilities when they reach older age; their needs become absorbed into the larger population of older people who have disabilities.

13 Disabled people, discrimination and disadvantage More likely to live in poverty the income of disabled people is, on average, less than half of that earned by non disabled people More likely to be economically inactive Less likely to have educational qualifications More likely to experience hate crime or harassment More likely to have housing problems More likely to experience problems with transport

14 The impact of discrimination and exclusion Living standards Employment Health and social care

15 Living standards Exclusion from income sources prior to reaching retirement age Inadequacy of pension provision Overwhelming reliance on means-tested benefits

16 Employment Exclusion from employment Age discrimination Artificial retirement

17 Inactivity rates among men (%) by age with a limiting long-standing illness or a limiting health problem or disability

18 Disability, deprivation and the labour market Disabled people are less likely to work than non-disabled people: 1 in 2 vs 4 in 5 non-disabled people Nearly half of all disabled people are economically inactive compared with 15 per cent of non-disabled people To give disabled people the same employment rate as non-disabled people would mean getting 1.8 million more disabled people into work Employment rates are particularly low for people with mental health problems or intellectual disabilities Family carers of people with disabilities are also likely to be disadvantaged in the labour market Inequalities experienced during working age are continued into, and compounded, in older age. Labour market disadvantage leads to lower pensions after retirement for both people with disabilities and for their family carers.

19 Health and social care Reliance on families Impact of health and social care systems Intellectual disability vs. older people s services The need for non-discriminatory models of care based on independence not dependency

20 People with intellectual disabilities living with ageing family carers Transitions in social policy From institutional to community care - cuts in services and/or charges for services From containment to integration From dependence to independence

21 People with intellectual disabilities living with ageing family carers 60% of people with intellectual disabilities live with family carers; many of these are ageing. These numbers are increasing (Office of National Statistics, 2001) Many are unknown to services Need practical and emotional support to sustain the caring relationship Need mechanisms to prepare family members for future change if and when the caring relationship breaks down

22 Age discrimination among service providers working with people with intellectual disabilities 30% of care workers working with people over 60 did not think that personal skills training was necessary. No-one working with younger adults took this view. Only 3 out of 10 people over 60 got training vs. 8 out of 10 people under 60. Only one-third of those working with the over 60s thought they would become more independent in the future; three-quarters of those working with the under 50s thought this would be the case. Older people living in supported living situations were twice as likely as younger people to have no structured activity outside the home and overall to have fewer regular organised activities. Of those living in the family home, 50 per cent of the over 60s had no day service provision vs. 9 per cent of the under 60s.

23 Promoting autonomy for older people with intellectual disabilities Resisting ageist stereotypes Basing provision on ability not disability Maintaining aspirations and expectations regardless of age Treating people with ID and their family carers as equal partners in planning their lives Retaining goals of integration, participation, choice Supporting people in the present while preparing them for the future

24 The End Thank you