TY - BOOK

T1 - Estimating the Need for Social Care Services for Adults with Disabilities in England 2012-2030

AU - Emerson, Eric Broughton

AU - Robertson, Janet Margaret

AU - Coles, Bryn

AU - Hatton, Christopher Rowan

PY - 2012/7/1

Y1 - 2012/7/1

N2 - Executive summaryThe aim of the project was to estimate changes in the need for social care services for adults with disabilities in England between 2012 and 2030. The project built upon and extended our previous work on estimating future need for social care services among adults with learning disabilities. The latest update of our previous work suggested that there will be sustained growth in the need for social care services for adults with learning disabilities over the time period 2011-2030, with estimated average annual increases varying from 1.2% to 5.1% (average 3.2%). Our previous approach was, however, based on a number of assumptions, some of which we believe to be highly robust, some less so. The most critical source of uncertainty in the model was in the validity of our estimates of the likely eligibility for social care services for new entrants at different levels of ‘need’, especially for potential new entrants with less severe disabilities. In our previous work we used estimates developed through a process of consultation with relevant stakeholders (primarily disabled people’s organisations and field agencies). One of the key aims of the present project was to test out and refine these assumptions through field-based research. Other aims of the present project were to:• update the estimates based on revised information; • extend the model to other adults with disabilities.Our proposed primary research involved attempting to collect information on the assessed level of eligibility for samples of 50 children aged 14-16 identified as having SEN in 10 CASSRs. In order to compensate for potential drop out we initially recruited 18 CASSRs who all indicated a strong commitment to participating in the project. Unfortunately, the fieldwork took place during 2010/11, a period of unprecedented turmoil within CASSRs in England. Despite extending the period of data collection by several months, only six CASSRs were able to provide any data and only two CASSRs were able to provide data on the target sample of 50 children. As a result, we were only able to collect information on 223 young people (45% of the target sample). Given the difficulties we encountered in our field work, we agreed with NIHR SSCR that we would also undertake some exploratory analyses of the association between SEN and the experimental disability statistics collected by DfE in Spring 2011. The aim of these analyses was to explore the relationship between SEN and disability (as defined under the Equality Act 2010) and to determine whether this information could be used to strengthen the estimates of assessed level of need for adult social care services. Unfortunately, the results of these analyses suggested that the disability data collected by the DfE were subject to a number of serious biases associated with social exclusion and socio-economic position that made their use untenable in the present project. We were, however, able to use the new field-generated estimates of eligibility to: (1) update our previous work on estimating future need for adult social care services for people with learning disabilities; and (2) extend this work to estimating future need for adult social care services for people with physical disabilities (including sensory impairment) in the age range 19-30. To estimate future need beyond this age point would require making important assumptions about the annual age-specific incidence (onset) of serious physical and sensory impairments in adults. There is, at present, insufficient information to make these assumptions with any degree of confidence. However, such information will become available in the near future with the release of Wave 2 data from the Office for Disability Issues’ longitudinal Life Opportunities Survey.1All of the scenarios included in our estimation procedures suggested sustained growth in the need for social care services for adults with physical or learning disabilities over the time period 2012-2030. • For younger adults with physical disabilities compound annual growth rates vary from 1.8% to 6.5%. A ‘no growth’ scenario in the number of users of adult social care services for young adults with physical disabilities could only be achieved by either cutting services to existing users or by rationing access to services to young adults with physical disabilities with ‘critical’ need and 61% of those with ‘substantial’ need.• For adults with learning disabilities compound annual growth rates vary from 2.0% to 2.7%. A ‘no growth’ scenario in the number of users of adult social care services for adults with learning disabilities could only be achieved by either cutting services to existing users or by rationing access to services to young people with learning disabilities with ‘critical’ need and just 25% of those with substantial need.As we have argued above, rationing social care to people with critical or substantial needs is inconsistent with the policy objective strongly emphasised in Putting People First2 of adopting a more preventative approach to social care.3-5 There are a number of factors that would have an impact on future need that we were not able to take into account. These included:• Effects due to international migration; • Changes in the incidence of disability over time; • Changes in mortality rates among people with disabilities over time. It must be stressed that our predictions are based on estimates of ‘need’ rather than ‘demand’. Changes in demand are likely to outstrip changes in need due to a variety of factors combining to reduce the capacity of informal support networks to provide care, networks that have primarily relied on the unpaid labour of women. These factors include: • Increases in lone parent families6 • Increasing rates of maternal employment6• Increases in the percentage of older people with learning disabilities (whose parents are likely to have died or be very frail)7 8• Changing expectations among families regarding the person’s right to an independent life.

AB - Executive summaryThe aim of the project was to estimate changes in the need for social care services for adults with disabilities in England between 2012 and 2030. The project built upon and extended our previous work on estimating future need for social care services among adults with learning disabilities. The latest update of our previous work suggested that there will be sustained growth in the need for social care services for adults with learning disabilities over the time period 2011-2030, with estimated average annual increases varying from 1.2% to 5.1% (average 3.2%). Our previous approach was, however, based on a number of assumptions, some of which we believe to be highly robust, some less so. The most critical source of uncertainty in the model was in the validity of our estimates of the likely eligibility for social care services for new entrants at different levels of ‘need’, especially for potential new entrants with less severe disabilities. In our previous work we used estimates developed through a process of consultation with relevant stakeholders (primarily disabled people’s organisations and field agencies). One of the key aims of the present project was to test out and refine these assumptions through field-based research. Other aims of the present project were to:• update the estimates based on revised information; • extend the model to other adults with disabilities.Our proposed primary research involved attempting to collect information on the assessed level of eligibility for samples of 50 children aged 14-16 identified as having SEN in 10 CASSRs. In order to compensate for potential drop out we initially recruited 18 CASSRs who all indicated a strong commitment to participating in the project. Unfortunately, the fieldwork took place during 2010/11, a period of unprecedented turmoil within CASSRs in England. Despite extending the period of data collection by several months, only six CASSRs were able to provide any data and only two CASSRs were able to provide data on the target sample of 50 children. As a result, we were only able to collect information on 223 young people (45% of the target sample). Given the difficulties we encountered in our field work, we agreed with NIHR SSCR that we would also undertake some exploratory analyses of the association between SEN and the experimental disability statistics collected by DfE in Spring 2011. The aim of these analyses was to explore the relationship between SEN and disability (as defined under the Equality Act 2010) and to determine whether this information could be used to strengthen the estimates of assessed level of need for adult social care services. Unfortunately, the results of these analyses suggested that the disability data collected by the DfE were subject to a number of serious biases associated with social exclusion and socio-economic position that made their use untenable in the present project. We were, however, able to use the new field-generated estimates of eligibility to: (1) update our previous work on estimating future need for adult social care services for people with learning disabilities; and (2) extend this work to estimating future need for adult social care services for people with physical disabilities (including sensory impairment) in the age range 19-30. To estimate future need beyond this age point would require making important assumptions about the annual age-specific incidence (onset) of serious physical and sensory impairments in adults. There is, at present, insufficient information to make these assumptions with any degree of confidence. However, such information will become available in the near future with the release of Wave 2 data from the Office for Disability Issues’ longitudinal Life Opportunities Survey.1All of the scenarios included in our estimation procedures suggested sustained growth in the need for social care services for adults with physical or learning disabilities over the time period 2012-2030. • For younger adults with physical disabilities compound annual growth rates vary from 1.8% to 6.5%. A ‘no growth’ scenario in the number of users of adult social care services for young adults with physical disabilities could only be achieved by either cutting services to existing users or by rationing access to services to young adults with physical disabilities with ‘critical’ need and 61% of those with ‘substantial’ need.• For adults with learning disabilities compound annual growth rates vary from 2.0% to 2.7%. A ‘no growth’ scenario in the number of users of adult social care services for adults with learning disabilities could only be achieved by either cutting services to existing users or by rationing access to services to young people with learning disabilities with ‘critical’ need and just 25% of those with substantial need.As we have argued above, rationing social care to people with critical or substantial needs is inconsistent with the policy objective strongly emphasised in Putting People First2 of adopting a more preventative approach to social care.3-5 There are a number of factors that would have an impact on future need that we were not able to take into account. These included:• Effects due to international migration; • Changes in the incidence of disability over time; • Changes in mortality rates among people with disabilities over time. It must be stressed that our predictions are based on estimates of ‘need’ rather than ‘demand’. Changes in demand are likely to outstrip changes in need due to a variety of factors combining to reduce the capacity of informal support networks to provide care, networks that have primarily relied on the unpaid labour of women. These factors include: • Increases in lone parent families6 • Increasing rates of maternal employment6• Increases in the percentage of older people with learning disabilities (whose parents are likely to have died or be very frail)7 8• Changing expectations among families regarding the person’s right to an independent life.

M3 - Commissioned report

BT - Estimating the Need for Social Care Services for Adults with Disabilities in England 2012-2030

PB - Lancaster University

CY - Lancaster

ER -