Facts and Figures

Current Situation

Calculating the precise number of people with a learning disability is problematic at local and national level.  Figures vary based on definitions, data sources and any adjustments made for increased longevity and reducing mortality. Estimates of the number of people with learning disabilities can be calculated using an ‘administrative prevalence’ or a ‘true prevalence’ approach:

• Administrative Prevalence - This approach calculates the prevalence of learning disabilities based on the number of people who are known to local agencies/service providers because they are on the relevant ‘register’.  This information is then combined with census data to calculate age and gender specific prevalence rates for people with learning disabilities who are known to learning disabilities services.    This approach to calculating the number of people with learning disabilities is limited, as only a minority of people with less severe learning disabilities are known to service providers.  The majority of those known to providers have severe learning disabilities (Richardson & Koller, 1996).
• True Prevalence- True prevalence rates of learning disabilities are calculated by estimating the ‘hidden’ number of people with (predominantly) mild learning disabilities and adding this estimated figure to the administrative prevalence figures.

 National Level

Using the administrative prevalence approach, nationally there are 169,000 people aged twenty or more with a learning difficulty.  This is equivalent to an overall prevalence rate of 0.46% of the general population (Emerson & Hatton, 2004).  This overall figure comprises 93,000 men; 75,000 women; 143,000 people aged 20-59 (prevalence rate of 0.54%); and 26,000 aged 60 or over (prevalence rate of 0.25%). Further details about administrative prevalence rates are contained in table 1 and 2 below.

 

 Of those known to learning disability services:

• 57% have significant health/social care needs.
• 56% receive some form of out-of-home residential support, with this figure rising to 76% in the 50+ age group.

 Using true prevalence calculations:

• 796,000 people in England have a learning disability.  This equates to a prevalence rate of 2.2% of the adult population.  This figure comprises of 448,000 men and 338,000 women. 
• 622,000 people with learning difficulties are aged 20-59 (prevalence rate of 2.3%) and 174,000 are aged 60 or over (prevalence rate of 1.7%)

Tables 3 and 4 below illustrate the number of people with learning disabilities, based on true prevalence calculations.  Information is disaggregated by age and gender.

Trends

Demographic trends

National

Demographic trends are likely to result in a growing number of people with learning disabilities.  Trends include both changes to the demographic profile as a whole and the impact of reduced mortality rates (which are expected to continue to fall over the next two decades) among people with learning disabilities (Emerson & Hatton, 2004). Key demographic trends in relation to learning disabilities are:

• Overall, there will be an increase over the next two decades in both the numbers of adults with learning disabilities known to services (7% over the decade 2001-2011, and 10% over the two decades 2001-2021).
• There will be an increase in the estimated ‘true’ number of adults with learning disabilities in England (8% over the decade 2001-2011, and 14% over the two decades 2001-2021).
•  In common with general life expectancy trends, there will be marked increases in both the numbers of older people with learning disabilities who are known to services and those with learning disabilities.  Of particular relevance:

There will be a 28% increase in the administrative prevalence rate for those with learning difficulties in the 50+ age range over the decade 2001-2011 and a 48% increase in the administrative prevalence rate over the two decades 2001- 2021 for this age group.

The estimated ‘true’ number of people with learning disabilities in England  will increase by 31% over the decade 2001-2011 and 53% over the two decades 2001-2021 for those in the 50+ age group (calculations based on Emerson & Hatton 2004).

• The changes to prevalence rates among those aged 15-49 will be smaller.  It is estimated that the number of people in this age group, with a learning disability, will increase by 4% in the period 2001-2011 and by 0.2% in the period 2001-2021.  The ‘true’ number of people in this age group with learning disabilities will increase by 6% in the period 2001-2011 and by 2% in the period 2001-2021.

There are other factors that are likely to lead to an increase in age-specific rates of learning disability for adults in England in the next two decades:

• The increase in the proportion of younger adults who belong to South Asian ethnic communities (a number of studies have reported significantly higher prevalence of learning disabilities – and especially more severe learning disabilities - in adults belonging to South Asian communities living in Britain).  Patterns of migration also result in these groups demographic profile being skewed towards younger age groups (Emerson & Hatton, 2004).
• Some evidence of increased survival rates among young people with severe and complex disabilities
• Reduced mortality among older adults with learning disabilities.

Table 5 below provides information about the predicted number of people with learning disabilities (adjusted for the predicted effects of the changing ethnic composition of the English population) in the period 2001-2021.  The table includes information about the number of people with learning disabilities disaggregated by age using both administrative and actual numbers.

Source: Emerson & Hatton, 2004

The impacts of these increases and demographic changes to the learning disability population are likely to be significant.  Emerson & Hatton (2004) predict that public agencies in England will need to provide out-of-home residential support for an additional 12,000 older adults with learning disabilities by 2011 and for an additional 20,000 by 2021. Indeed, there is already evidence of a growing demand on services. A case review by the Association of Directors of Social Services (ADSS) highlighted that the number of adults with learning disabilities using social services has increased to a greater extent (15%) than the overall increase in people over 18 using social services in the period 2001-04. 

 Further, whilst there is little comprehensive data to substantiate suggested marked increases in the rates of survival into adulthood of children with severe and complex disabilities, there is anecdotal evidence that this may be the case.  Small-scale data analysis suggests that there has been an increase (approximately 0.21%) in the number of young children with severe and complex needs between 1991 and 2001.  The effect of this increase is likely to result in increased demand for higher cost support for children and young adults who have severe and complex needs both now and in the future.

Overall, evidence suggests that the number of learning disabled people is likely to grow over the next 20 years and that the demographic profile of the learning disabled itself change over this period.  Both factors have important implications for service commissioning and delivery models. 

 Local

Based on local administrative prevalence data, in April 2009 approximately 1504 individuals with a learning disability were known to Newcastle Adult Services, of which over 640 were currently receiving one or more ‘directly commissioned’ services. Around 90 people received a direct payment to purchase their care and support requirements; and over 100 people with learning disabilities had received short-term respite care between April 2008 and January 2009; and 265 individuals received day care provision.

Using ‘true prevalence rates’ of approximately 2% and the modeling used by Emerson & Hatton (2004) results in 2396 adults in Newcastle with a learning disability.  However, Quality Outcome Framework data for 2006-2007 suggests that 1064 people (adults and children) in Newcastle have a learning disability, giving an unadjusted prevalence rate of 0.4%.  This demonstrates the point made earlier, that different information sources give different data about the prevalence of learning disabilities which, in turns makes precise calculations of the size of the learning disabled population difficult.  The data also highlights the importance of having available up to date data about the learning disabled population as possible upon which to base commissioning and service delivery decisions. There is the potential for data that is only a few years old to be inaccurate in the context of the changing demographic profile of this group.

 Looking forward, the demographics at work nationally, will be broadly replicated at local level.  Therefore, there will be increasing numbers of adults with learning disabilities (in part due to an increase in older people with learning disabilities) and increasing numbers of young people with complex needs.  Statistical modeling, using true prevalence rates, suggests that from 2008 until 2030 the numbers of people with learning difficulties will increase across all age groups (0-19, 20-39, 60-74, 75-84 and 85+) with the exception of the 40-59 age group.  However, towards the end of this period, the decline in the number of people with learning disabilities aged 40-59 will end and begin to rise from the lower figure previously reached. The graph below (figure 2) provides further details of the estimated number of people with learning difficulties in Newcastle, by age group, from 2008-2030 based on national modeling approaches and controlling for relevant demographic variables.

At a local level, it is challenging to accurately calculate the precise number of adults in Newcastle who have a learning disability.  As such, this may limit the ability of service providers and commissioners to calculate precisely future trends and identify resulting commissioning implications. In addition to the broader data challenges identified at national level, it is also clear that models developed to identify current and future prevalence and numbers of people with learning disabilities do not always correspond with local information.  For example, the actual number of learning disabled people known to services in Newcastle is greater for all adult age groups than the figures generated by modeling.   This is illustrated by the graph below (figure 1) which shows the actual number of learning disabled people known to Newcastle Adult Services compared the administrative number expected using modeling.  However, these models do enable broad trends to be identified so that general commissioning, cost and service-model requirement implications can be identified.  Data from the models can be supplemented by local data when available to provide a more detailed understanding.

Figure 1: Actual & Estimated administrative prevalence rates of learning disabled people in Newcastle.

Figure 2: Graph illustrating the estimated true prevalence of adults with learning disabilities by age (2008-2030).

In more detail:

•  Numbers of young people with learning disabilities are likely to increase over the next 20 years.  Over the next three years, the challenge will be primarily around individual transition issues rather than volume.  However, the specific needs of the growing south Asian young people, with learning disabilities, may present new challenges.   
•  From 2015 onwards, the volume of young people with learning disabilities increases and forward planning for transition will become critical on both quality and financial grounds. Numbers of younger adults, with learning disabilities are projected to grow steadily and to generate significant demand for provision. This group is a primary market for small scale extra care services, personal assistants and other less traditional service models.
• The dip in numbers of 40-59 year olds in the general population is unlikely to be fully reflected in the learning disabled population due to reduced mortality.
• The impact of the population-wide jump in numbers of 60-74 year olds, with learning difficulties is significantly increased by decreasing mortality levels of people in this age group.  Analysis indicates that that the population of learning disabled 60-74 years olds will increase by an additional 17% by 2030 as a result of reduced mortality and increased life expectancy among learning disabled people.
• It is also likely that older people with learning disabilities will experience age-related health and wellbeing issues, such as dementia or frailty, that may require increased levels of existing support or modified support services to be provided.
• Numbers of people aged 75+ with learning difficulties are and will remain small, but the challenge of providing quality service options for this group should not be underestimated as they too are likely to experience frailty, dementia and other age-related health and wellbeing issues that may have support implications.

 

 

Targets

Targets & Indicators

The impact of provision for people with learning difficulties is measured against a number of key targets and indicators.  Key national-level indicators include:

• National Indicator 145:- Adults with learning disabilities in settled accommodation.
• National Indicator 146: - Adults with learning disabilities in employment.

Performance

At a local level, modified working arrangements have been or are being rolled out to improve service delivery for people with learning disabilities.  Developments include:

• Partnership working with WorkFirst, Workstep and Capabilities initiatives This has enabled Newcastle Adult Services to make good progress in supporting people with learning disabilities to access employment and training opportunities.
• Newcastle City Council is a member of 'In Control Total Transformation'. This is a programme involving twenty Local Authorities across England. The In Control Total Transformation programme comprises a number of workstreams which have been incorporated into Newcastle's Adult Transformation Programme to ensure that Newcastle Adult Services is in a good position to respond to personalisation.
• Strengthening partnership and inter-agency working. This has included developing a link to the Health Services’ Disability Equality Schemes and Health Improvement Strategy, links with Newcastle Hospitals Trusts including their Equality and Diversity programme, links to the voluntary sector and a Liaison Nurse role identified as a priority action to improve understanding and support for secondary (hospital) care staff.
• Putting in place systems, plans, structures and posts to improve service development and delivery for the learning disabled.  This includes an approved Action for Health framework, a Health sub-group, assessment frameworks securing funding for a Health Action Plan Co-ordinator post.
• Addressing capacity issues to increase or enhance services.  For example, the recently completed resettlement process for the last of the residential patients from Northgate and Prudhoe Hospitals has significantly enhanced the specialist services available to people with learning disabilities within the City. Activities have also been undertaken where possible to address vacant or new posts and provide training to increase awareness and knowledge of learning disabilities amongst the wider health workforce.
• Ensuring that all people with a learning disability known to services are now registered with a GP.  However, it may be the case that not all individuals have their learning disability recorded on the GP register.

Local Views

People with learning disabilities are able to give their views about their needs, service provision and required future developments through a number of mechanisms.  The Skills for People programme supports adults and young people with learning and/or physical disabilities to speak up for themselves, gain confidence and have more control over their lives through participation in planning and presenting training courses.  The Better Days project provides opportunities for people with special needs to develop activities based on their views of local needs assisted by a support worker. A consultation on the Citizens First Strategy enabled people with learning disabilities to give their views on their needs and services.  The consultation highlighted the following as locally relevant issues:

• There are people with learning disabilities living at home who have access to few if any other services.
• There are people, with learning disabilities, who work and may have no other service but whom would still like to have their say.
• There are people who live in supported living homes beyond the membership of It’s My Life Tenants Group.

National and Local Strategies

National

In recent years, the government has announced a number of initiatives to develop services for people with learning disabilities and significantly change how these services are commissioned, planned and delivered. As a result, service commissioning, development and delivery for people with learning disabilities is undertaken within a national framework of complimentary strategies.  These include:

• Putting People First: A Shared Vision and Commitment to the Transformation of Adult Social Care (Department of Health, 2007)
• Valuing People  (Department of Health, 2001)
• Valuing People Now (Department of Health, 2009)
• Improving Life Chances for Disabled People (Prime Minister’s Strategy Unit, Department for Work & Pensions, Department of Health, Department for Education & Skills, Office of the Deputy Prime Minister, 2005).

 Together, these strategies set out principles that must underpin services, a model of provision that should inform the commissioning and delivery of individual services and the outcomes that provision should deliver. Core areas in which services should be provided include:

• Learning & Employment
• Transition to adulthood
• Health
• Community
• Families and carers
• Housing

Models also stress the need for commissioning and delivery models that are focused on ensuring high quality services which ensure the safety of people with learning disabilities.  

Key components of the service model for those with learning disabilities include:

• The implementation of personalisation – this is a key aspect of social care reform and is designed to empower citizens to shape their own lives and the services that they receive.  Personalisation includes:
  
  • The roll-out of individual budgets for people with learning disabilities to purchase their own support package.  It is envisaged that by 2011 all adults eligible for social care will have a personal budget for the full cost of their support package mostly via a Direct Payment.
  • Greater range, quality and choice of provision that offers maximum independence.
  • Access to an improved range of community-based services, with better prevention and early intervention provision.
• Personalisation has significant implications for the way in which services are delivered as it requires the delivery of flexible services, increased choice and less reliance on more traditional models of support.

At a national level (and at local level), there has been a move away from the use of residential care.  This is because of the potential for residential care to make it more difficult for people to keep in touch with family and friends and because out of area placements are often more expensive and may cause difficulties in communication and co-ordination. 

 Implications of national policy changes

These national policy changes, combined with the results of demographic changes which are increasing the number of adults with learning disabilities, has required local councils to increase spending to modernize day services, respond to the implications of the closure of long-stay hospitals and to replace local authority residential homes so that service models deliver services that meet modern needs and standards. This has created a budgetary pressures that commissioning needs to manage effectively so as to ensure the long-term viability of services for the learning disabled population.  All of these issues are faced by those commissioning services and are issues that commissioning needs to consider if it is to support the delivery of effective, person-centered and sustainable services for people with learning disabilities that reflect and support national policy requirements. 

 Local

At a local level, a key strategy is the Adult Services Transformation Programme.  This focuses on:

• Improving the health and addressing health inequalities experienced by people with learning disabilities.
• Developing Community Teams to support people with learning disabilities.
• Developing an appropriate range of accommodation for those with learning disabilities.
• Ensuring appropriate transition arrangements for children and young people.
• Establishing appropriate alternatives to day care.

Additional local strategies that shape and provide a framework for the commissioning and delivery of services for people with learning disabilities include the “Learning Disability Housing Strategy” and the “Supporting People Strategy”.  These strategies are designed to give learning disabled people greater control and satisfaction with their accommodation and to support the provision of flexible care and support services that are able to respond to fluctuating levels of need.

Current Activity and Services

Together, Newcastle City Council and its partners commission and provide a range of services designed to support those with learning disabilities. Learning disability services are provided in accordance with the criteria of “fair access to care”, subject to a baseline assessment of whether or not an individual is classed as having a learning disability. The current access criteria are that an individual must have an assessed IQ of 70 or lower plus a critical or substantial need.

Provision includes non-residential services (supported accommodation, day opportunities, domiciliary care, access to education, professional support and services for parents and carers) and residential care services (provided by both registered residential care providers and specialist residential care providers who provide care solely for those with learning disabilities).  In addition to ‘directly commissioned’ services, support is also provided by  a range of advocacy services and partnership structures which give service users, parents and carers the opportunity to become involved in service development and delivery.  Further information about current activities and services is detailed below. 

The Learning Disability Social Work Team

The central role of the Social Work Team is to deliver Care Management.  This includes undertaking assessment, care planning and monitoring and reviewing tasks. Care Management may also incorporate offering advice and information, applying for funding, identifying services and commissioning packages of support. The team has 3 short-term social workers, 12 social workers who get involved in long-term work, a specific transition worker and a dedicated hospital social worker. There are also two project managers within the team and a supported living coordinator.    

Residential and nursing care

Nationally and locally, there has been a clear policy drive away from residential care provision for learning disabled people.  This has been in response to central government directives, service user wishes and poor outcomes for individuals that were not in-keeping with the actual costs of support. Newcastle was at the forefront of the development of Independent Supported Living (ISL) services offering care and support provided to individuals in shared or independent houses.  As a result, there are small numbers of residential care placements specifically for adults with a learning disability in Newcastle.

A number of registered homes for older people vary their registration to include adults with a learning disability.  Some residential homes are available specifically for adults with a learning disability aged 18+ years, although these tend to be small in number with very little turnover.  The cost of residential care varies. Prices can reflect a standard service in line with older people’s residential care; or can incorporate additional support costs to meet the specific needs of learning disabled people. 

Domiciliary care services

Domiciliary care services are currently provided to over 570 learning disabled adults, including over 300 individuals who are living in Independent Supported Living (ISL) accommodation in Newcastle. These services are provided by independent organisations on the City’s approved list of providers to support individuals in their own homes. This may be in shared or supported housing, or people living in their own homes or living with carers.  Domiciliary services are designed to meet the particular assessed needs of people with learning disabilities.  In this context, they may be used to reduce social isolation, support people with learning difficulties to find employment, assist people to make and maintain friendships and relationships, support people to manage their home environment and domiciliary models may also provide personal care. 

There has been a 58% increase in the number of people receiving domiciliary care services since 2005, compared to a 25% increase in learning disabled people in receipt of services overall (in part due to more learning disabled people overall, and in part due to more people in ISLs than in other service models in line with Valuing People principles). The cost of providing ISL service models is the main growth area in learning disabilities. A national and local policy shift away from institutional care means that the volume of people in home care has increased. In the context of demographic changes detailed above, this is expected to increase further. 

Day care services

Day care services are available for learning disabled people through Newcastle City Council’s resource centres or at centres operated by independent organizations. Day care services offer communal care in a setting outside of a user’s home. Provision ranges from short-term services concentrating on one or two specific skills areas, to medium and long-term services where a wide range of skills training is offered to users with severe disability/deteriorating health/substantial frailty.  The services are available for at least five hours per day and individuals return home on the same day.   

Short break (respite) services

Short break/respite services are available for learning disabled people through the Council’s in-house respite care service or at centres run by independent organisations.  Respite care describes separate periods of care for learning disabled people if they, or their carer, need a short-term break.  Respite care can also be provided in an emergency such as illness.  The majority of service users have used the Directorate’s in-house respite care service. However, a small number of services have been commissioned through independent providers in response to particular needs. Between August 2008 and August 2009, Adult Services has provided respite care/short breaks to 105 people with a learning disability. 

Figures show an overall increase in number of respite days provided over the last three years, with the number of stays per service user reducing and the length of stay of episodes increasing.  Figures also reveal that around 70% of service users receiving respite care at the Council's in- house respite care service also receive day care services from the Council's resource centres.   

The Supporting People programme

The Supporting People programme is designed to help the most vulnerable members of the community to get the help and support they need.  People with learning disabilities are one of the key groups targeted by the Supporting People programme.  The programme is currently being used to develop and support:

• Individual tenancies for people with learning disabilities in clusters that provide low to medium-level support.
• Accommodation-based services for individuals with complex needs and people at risk of homelessness.
• Floating short-term support able to respond to crises among people living in the community without a long-term service.
• Relevant services with secured capital funding.  

In addition, the following provision and activities have also been developed to provide support to people with learning disabilities:

• A pilot project involving three GP practices which is leading to a new approach to the maintenance of accurate GP registers.
• ‘Inclusion North’ training on HAPs and Health Facilitation February 2007.
• The Dignity in Care programme has been extended to people with learning disabilities.
• Analysis of what health information is being used by health professionals has been carried out by Better Days.
• Identification of appropriate health information for a website that can be used by self advocates, carers and professionals.
• There are plans to develop existing groups and mechanisms into the Partnership Board through the Citizens Champions and provide administrative support to help where necessary.
• The development of a Hate Crime Pack which staff can use with people with learning disabilities to reduce the fear of crime and to report incidents when they occur. 
• Providers are exploring how it may be possible to give groups representing learning disabled people more of a voice and the appropriateness of undertaking consultations on specific areas and themes where necessary.

What are the key inequalities?

Having a learning disability is associated with inequality and poorer health & well-being and social outcomes than is the case for those without a learning disability:

• Only 15% of people with a learning disability have their own home. A follow up of the National Child Development Study cohort to age 33, found that people with a mild learning disability were significantly more likely than their peers to be living with their parents, be unemployed, have literacy and numeracy problems and to experience high levels of psychological distress (Fuijiura, 2003; Maughan et al, 1999).
• More than 30% of people with learning disabilities live in residential care homes. These care homes can be a considerable distance away from their place of origin and their families.
• Many people with learning disabilities are living with older family carers who have their own needs.
• Only one in ten of those known to social services has any form of paid employment, and of those only very few work more than 16 hours a week.
• The 2008 report of the Parliamentary Joint Committee on Human Rights 'A Life Like Any Other?' highlighted continued and extensive failure of services and society to accord people with learning disabilities their basic rights.
• The 2008 report of the Independent Inquiry into healthcare of people with learning disabilities ('Healthcare For All'), reported significant and ongoing inequalities in access to healthcare services and in the quality of services.

Other health and wellbeing issues include:

• Respiratory disease is the leading cause of death for people with learning disabilities (46%-52%) and is much higher than for the general population (15%-17%).
• The incidence of cancer amongst people with learning disabilities is rapidly increasing due to increased longevity.
•  Coronary Heart Disease is the second most common cause of death amongst people with learning disabilities.
•  People with learning disabilities are between 8.5 and 200 times more likely to have a visual impairment compared to the general population and around 40% are reported to have a hearing impairment, with people with Down’s syndrome at particularly high risk of developing visual and hearing loss.
• 36.5% of adults with learning disabilities and 80% of adults with Down’s syndrome have unhealthy teeth and gums.
• Although people with learning disabilities visit their GP with similar frequency to the general population, they are less likely to receive regular health checks.
• Adults aged over 60 are less likely to receive a range of health services compared to younger adults with learning disabilities.
• Over 80% of adults with learning disabilities engage in levels of physical activity below the minimum recommended by the Department of Health, and have a much lower level of physical activity than the general population.
• People with learning disabilities are at risk of receiving no mental health service, due to the lack of communication between mainstream psychiatry services and learning disability psychiatry services.

(information taken from: Hassiotis, A., Baron, P. & O’Hara, J. (2000) ; Nottingham Joint Strategic Needs Assessment, April 2009).

What are the key gaps in knowledge / services?

Knowledge

Because of limitations in available data and modeling techniques, it is very difficult to calculate the precise numbers of people with learning difficulties who will require services.  However, available information does enable broad trends and service delivery implications to be identified; particularly if this information is supplemented with local knowledge and data.   

Services

The increase in the learning disabled population, the changing demographics of this population, budgetary considerations and national policy requirements require the development of commissioning and service models to meet the needs of Newcastle residents where they wish to remain in Newcastle. It is acknowledged that there is a need to develop more independent, financially sustainable living arrangements and support models, as alternatives to residential and nursing care, so that effective, sustainable provision for learning disabled people is in place, as the numbers of people with learning difficulties increases and demographic characteristics of the learning disabled population change. In particular, there is a need to develop a range of alternative, good quality, cost effective service models to support independent living for those with a learning disability.    In addition, there is a concern (as identified in the Draft Urgent Care Strategy) that people with learning disabilities may not be having their urgent-care mental health needs met and are not meeting service criteria. Developing modified services will require commitment of planning and implementation resources from the Council generally and Adult Services in particular.

What are the risks of not delivering our targets?

Failure to deliver against targets and to deliver services that reflect national policy guidance and good practice will result in:

• Poorer services for people with learning difficulties that will not meet their needs.
• A greater burden of care being placed on families and carers of those with a learning disability in a context where it is likely that the number of carers will decline.
• Additional costs of providing emergency services because of a failure to provide non-emergency provision which may prevent situations from escalating into emergencies.
• Failure of services to incorporate key principles into their design and implementation such as person-centered planning, individual budgeting and the active involvement of people with learning disabilities and their families and carers in choosing their package of support.

Is what we are doing working?

At both a national and local level, demographic increasing numbers of people with learning disabilities, combined with budgetary pressures and policy requirements to develop personalisation, choice, improve standards and deliver better outcomes is making it difficult for existing models of provision to work effectively. New approaches are required to ensure that services reflect needs, policy requirements and remain financially viable.

In particular, existing ISL service models are regarded as unsustainable in the context of the demographic projections, and do not offer individuals the independence they now aspire to. A range of alternative good quality, cost effective service models is required in order for the City to meet the needs of people with a learning disability and respond to increasing cost pressures.  

In this context, the Council is committed to commissioning and delivering services that:

• Support personalisation, choice and flexibility in support and housing services.
• Meet the needs of young people with learning disabilities.
• Deliver community-based services (including preventative models of care)
• Delivers effective transition support for young people.
• Provide social, training, employment and volunteer opportunities.

What is coming on the horizon?

It is anticipated that a number of issues will emerge in the medium term in relation to the commissioning and delivery of services for adults with learning disabilities.  These include: 

Demographic changes to the learning disabled population

• An overall, a key challenge for the Adult Services function, the Council more widely and relevant stakeholders is to commission and deliver services that reflect national level policies and strategies and which meet the needs of people with learning disabilities, their families and their carers in the context of budgetary pressures.
• There will be an overall rise in the numbers of adults with learning disabilities and an increase in the number of these adults who will access support provision.  This will include younger people as they transition into adulthood as well as older people.
• As both the number of young people (including young people with complex needs) and people aged 60-74 is forecast to grow.  This will be combined with a loss of older carers.   These changes will result in increasing numbers of people with learning difficulties who are eligible for support.
• A national and local policy shift away from institutional care means that the volume of people in home care has increased. In the context of demographic changes, this is expected to increase further still.

Assessment & Management

• There is likely to be an increase in assessment and care management costs, due to an increasing number of assessments and from an increased number of complex assessments that will result from demographic changes.
• From April 2009, the transfer of commissioning responsibility for NHS learning disabled budgets to local authorities will take place, which has a potential to add to assessment and management cost pressures as local authorities become responsible for the commissioning and delivery of adult social care that includes care for those requiring intensive packages of support.   

Budgetary Pressures

• There is planned 10% reduction in the Supporting People grant allocated to Newcastle City Council over the next three years, which may add to cost learning disability cost pressures.
• Changes in commissioning and care responsibilities between the NHS and local councils may also create cost pressures.

What should we be doing next?

A combination of changing national policy frameworks and the impact of demographic changes in the learning disabled population requires changes in the commissioning approach.  Future commissioning needs to ensure services support overall well-being by promoting independence and choice, by developing flexible and individualized services that combine both natural and paid supports, and by developing services which are financially sustainable.  At the same time, commissioning will also have to demonstrate efficiency, effectiveness and quality.  This will be achieved by working with partners and achieving ‘best value’ through competitive procurement wherever possible.  The approaches and activities required to commission and develop the appropriate services for learning disabled people, to address the challenges and requirements identified, are detailed below. Preparatory steps are already being taken and/or these approaches and activities are being rolled out to deliver service models that reflect new policy frameworks, changing needs in the learning disabled population and which are designed to manage any financial pressures.

Personalisation

The delivery of personalisation requires:

• Increasing the number of people with learning disabilities receiving and using direct payments and budgets to promote choice-based, flexible and individualized packages for support and person-centered planning.
• Supporting the development of individually-responsive services, to reflect national policy frameworks and to manage budgetary pressures. 
• The possibility of commissioning less provision based on traditional service models.  This could include reduced commissioning of:
  
  • Out of area placements
  • Traditional daycare services
  • Services via block contracts
• Commissioning that supports the modernisation of day care services to realize government objective of ensuring that people with a learning disability have real choice in how they spend their days.  This suggests the commissioning activities should focus on developing day care services that:
  
  • Enable people with learning disabilities to learn new skills via access to adult and further education.
  • Provide access to social and leisure activities (not necessarily based in a day care setting).
  • Offer opportunities to undertake paid and voluntary work. 

Respite Services

The importance of personalised respite is critical in achieving positive outcomes for both those with care needs and carers.  In line with the overall principles of personalisation, commissioning should focus on securing an improved variety of respite services which:

• Offer greater choice and flexibility.
• Include breaks at home.
• Include provision of equipment or adaptations to facilitate respite.
• Provide access to mainstream activities and community based activities.
• Support ‘good neighbour' groups and 'shared lives' services.
• Offer self directed support for respite.  

Health

Service and delivery agencies need to consider the delivery of provision that improves the health of people with learning disabilities and which reduces the health inequalities experienced by the learning disabled. 

Housing & Support Services

Key next steps in relation to housing and support services include:

◊          Managing the cost of providing ISL service models as this is likely to be  a main growth area in learning disabilities provision.

◊    Delivering an appropriate range of accommodation and housing tenancy models that meet individual needs and which also provide greater choice, opportunities for independent living and suitable housing options for people with learning disabilities as they grow older.  This may include investigating and where possible progressing:

o       Shared ownership options.

o       Extra Care models as housing options for people with less severe learning difficulties to provide secure, yet independent and personalized services.

o       Concierge-plus models.

o       Investigating opportunities for using assistive technology in a range of housing settings to further facilitate independence and tailor support to individual need.

o       Increasing the use of telecare as a model of support to support people with learning disabilities to retain their independence wherever possible.

o       The development of flexible, low level floating support to respond to varying and fluctuating levels of need, which includes support appropriate to deal with crises.  This would also include support for those who are not eligible for social care, those who have settled or un-settled accommodation and those who have fluctuating levels of need. 

Residential Services & Day Care

Next steps, in relation to residential and day care services include:

·        Re-settling people with learning disabilities who may still be long-stay patients in specialist hospitals back into the community in line with the principles of “Valuing People”.

·        Reducing the use of out of areas placements, which can be both expensive and possibly unsuitable.

·        Investing in service models that provide appropriate alternatives to day care.  However, day care provision will remain an option for those for whom the model is appropriate. 

Transition for Young People

·        Develop effective transition arrangements for children and young people.  This is particularly important as demographic analysis suggests transition-related demand will increase in the near future. 

Partnership & Interagency Working

·        Build on consultation and partnerships already undertaken by service commissioners and providers outlined to improve co-ordination.