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Memorandum from Mencap (SPP 68)

Background information

Mencap is the voice of learning disability. Everything we do is about valuing and supporting people with a learning disability, and their families and carers.

We work with people with a learning disability across England, Northern Ireland and Wales. All our services support people to live life as they choose. Our work includes:

• providing high-quality, flexible services in things like housing, employment, education and personal support that allow people to live as independently as possible in a place they choose

 

• providing advice through our help-line and website

 

• campaigning for the changes that people with a learning disability want.

 

We work with people with a learning disability of all ages. All our services are tailored to the individual so we can provide support throughout their life, ranging from support for a child as they grow up, through adulthood and into old age. Mencap's housing arm, Golden Lane Housing, provides suitable housing for people with a learning disability with varying needs as well as housing support through the Supporting People programme.

 

People with a learning disability have been one of the main groups of vulnerable people supported by the Supporting People programme. Data released by the Department for Communities and Local Government shows that between 2003 and 2008 the reported spend on Supporting People services for people with a learning disability averaged approximately 23% of the total budget. Over this period the total spend on people with a learning disability gradually decreased by almost 20% from £426,362,116 in 2003-04 to £346,626,291 in 2007-08.

 

 

Research into Supporting People and people with a learning disability

 

In August 2007, the Joseph Rowntree Foundation (JRF) published research exploring the impact of the Supporting People programme on people with a learning disability[1]. The report found that the impact of Supporting People on housing and support for people with learning disabilities has been mixed. On the positive side, the programme has provided a much-needed injection of cash into services for people with learning disabilities, which has enabled the development of an increasing number of supported living services. Importantly, the tenants of these services typically expressed pleasure with their homes and with the support they received. Most felt that such services offered them a significant degree of choice and control, particularly in relation to day-to-day decisions.

However, JRF also reported a lack of authoritative guidance on how 'housing related support' should be defined, leading to wide variations at local level. This resulted in some local authorities choosing to restrict the cost of individual support packages in different ways, such as limiting support to a defined list of 'eligible support tasks', or capping the number of support hours per week. Some local authorities felt that the monies should be used exclusively for individuals who were not eligible for health or social services under a statutory duty of care, limiting use to those people with learning disabilities with lower support needs.

JRF found that the supported living services being bought with this money were very different in different parts of the country, sometimes indistinguishable from residential care. These different types of support had advantages and disadvantages for the people living in them. People who were in the more individualised support packages in their own flats had more independence and control, but were more likely to feel isolated and lonely. People in shared accommodation often had less independence but were less likely to be lonely. While Supporting People appears to have increased the availability of supported living services for people with a learning disability, this has often come at the expense of abandoning the principles of supported living so that, in many cases, it has not fostered as much independence and choice as was hoped. Fundamental choices, such as where to live, who to live with and who to receive support from, were still typically made by service managers or commissioners.



Mencap's experience of reduced Supporting People funding

The effects of reduced funding for the Supporting People programme since 2003 indicate how the removal of the ring-fence may jeopardise tenants with a learning disability in supported living, particularly those who require less support. As a housing support provider, Mencap has applied for re-tenders of its contracts and lost those contracts because of pressure on local authorities' reduced Supporting People budgets. As a housing provider, we have witnessed the consequences of those changes in support to our tenants.

 

In Cornwall, for instance, a Supporting People contract, previously held by Mencap, was lost to a cheaper provider, which offered reduced support, including to Mencap tenants with moderate learning disabilites. That provider's commitment was to provide housing related support for only two years and then withdraw that support. However, people with a learning disability have ongoing housing support needs and therefore require ongoing support. Local and national government tend to think of Supporting People as a programme designed to 'cure' those people who face hospitalisation, homelessness or institutional care by supporting them on a journey towards full independence. Whilst such thinking may be aspirationally applied to other vulnerable people, including people with mental health problems or people coming out of homelessness, it is of limited relevance to people with a learning disability. A learning disability is lifelong and many people with a learning disability will not realistically be able to lead an ordinary life, including maintaining a tenancy, unless they receive adequate and ongoing support to do so. In Cornwall Mencap has therefore been negotiating with the other provider on behalf of its tenants to argue for ongoing support. The other provider has been sympathetic and now agrees with Mencap, so is providing minimal ongoing support with one face-to-face meeting per month and one telephone call per week for Mencap's tenants. We are concerned that if the money available for housing related support continues to fall, ongoing support such as this will be withdrawn and people with a learning disability will struggle to maintain their tenancies.

Furthermore, as a housing support provider via Supporting People, Mencap has often assisted tenants with non-housing related support, such as shopping and travel. As other providers have won these contracts at reduced rates, they have done so by more stringently limiting their service to housing-related support. One typical example in Cornwall is of a Mencap tenant who is eligible for housing-related support but not social care provision and can not go shopping as it causes them severe anxiety. Mencap previously supported them to shop as part of our Supporting People contract, whilst the new reduced-rate provider does not. The tenant is now dependant on the good will of Mencap staff who occasionally offer to assist with shopping.


Pressure on adult social care services

The removal of the ring-fence will inevitably further diminish the resource supporting vulnerable people's tenancies, as most local authorities divert funds to address their larger community agendas. This will place greater pressure on overstretched adult social care services to fill the gaps in support. People with a learning disability are already experiencing cuts in social care provision. This is because funding increases in social care for people with a learning disability are not keeping up with increases in demand. Recent research commissioned by Mencap and the Learning Disability Coalition found that the population of people with a learning disability is increasing at a rate of at least 3 - 5 % per year on average over the next five years[2]. This is due to demographic changes and medical advances that mean more babies are being born with a learning disability, more children with a learning disability are surviving into adulthood and more adults with a learning disability are living well into middle and old age. These changes are particularly increasing the numbers of people with profound and multiple learning disabilities, who have the most complex needs and require the most expensive packages of support. Meanwhile the Department of Health has been working under the assumption that demand is increasing by only 1% per year. Based on the Mencap and Learning Disability Coalition research, at least an extra £200 million per annum will be required over the years 2011-2014 to address the resultant shortfall.

This shortfall in funding has led to deterioration in care provision. People with mild and moderate learning disabilities now tend to receive no support due to tightening eligibility criteria. Those who are entitled to care have seen their support reduced. Furthermore some authorities have started charging for previously free services.

Supporting People has benefited some of those with mild and moderate learning disabilities who have been abandoned by the social care system, particularly as some local authorities seemed to see the monies as intended for those that were not in receipt of social care funding. An April 2009 survey by the Local Government Association and the Association of Directors of Adult Social Services has shown that only 27% of councils now offer services to people whose needs are assessed as anything less that 'substantial', representing a 3% decrease over the last year. Mencap is concerned that these people in particular, with mild or moderate learning disabilities, face a sudden removal of support unless the social care system is given the sufficient resource to offset the dissipation of the Supporting People budget. If a proportion of the money from Supporting People were to be directly transferred to social care however, there would have to be formal recognition that social care providers have some responsibility for housing support.


Conclusion

Mencap is primarily concerned that a major funding stream that is accessed by people with a learning disability to enable independent living is now under threat as local authorities are given the freedom to divert it to other priorities. In theory local authorities should continue to meet assessed needs, but in practice when funding for support becomes over-stretched, eligibility criteria are tightened.

Mencap is broadly supportive of some of the principles behind removing the ring-fence. In particular, Supporting People has not sat well with the principles of person centred planning. It therefore makes sense that following the removal of the ring-fence and successive reductions in the Supporting People budget, money is re-invested in social care services, which are increasingly embracing the personalisation framework and are in desperate need of funding. Without that support it seems difficult to see how the Government will realise its cross-departmental commitment to independent living for disabled people.

 

May 2009


[1] The impact of the Supporting People programme on adults with learning disabilities, Joseph Rowntree Foundation (2007)

 

 

[2] 'Estimating Future Need for Adult Social Care Services for People With Learning Disabilities in England'; Emerson, E & Hatton, C; Centre for Disability Research (2008)