Briefing area
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The topic areas below contain a brief overview plus links to further information, research findings, documents and other organisations' websites. Documents in pdf format need the freely available Acrobat reader.
There are currently well over 500 people in West Sussex running or planning their own care support under the county council's self-directed support schemes including Direct Payments. The ILA's work of independently helping people to do this legally and safely remains our biggest area of activity.
National and local targets are for huge increases in the numbers of disabled people offered this type of support, so this work is predicted to grow dramatically, along with the associated support services such as our payroll service, administration service, recruiting and CRB checking.
Substantial continued growth is also expected in our advocacy service as more disabled people and carers appreciate the effectiveness of having an independent advocate to help them voice their concerns and protect their interests.
Changing attitudes and expectations bring continuing demand for the ILA's information and campaigning services, including specific research, the annual conference programme and the role of influencing policy and service development.
Further details of our services are included on the services page of this website and in links from that page. Our quarterly newsletter (downloadable from the newsletters page) also gives regular information about service developments and current trends.
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There is increasing concern about growing commercialism in the field of self-directed support, which it is feared could affect the quality of support available.
Prominent disability rights expert Professor Peter Beresford, who spoke at the 2005 ILA conference, is one of several leading commentators raising the alarm about a likely proliferation of commercial support services springing up and offering ILA-type services.
The growth of self-directed support schemes is being seen as a potential money-spinner for various financial interests, and it flies in the face of the principle of disability support services being user-led. But in today's climate of free market forces, we can expect all sorts of ‘experts’ to emerge calling themselves brokers, agents, advisors, consultants, specialist support services etc.
The case will inevitably be made that organisations like the ILA should not be afraid of competition, and that if it results in a bigger range of competitive services this will benefit the end users.
But there is already growing evidence that it actually leads to costs going up and quality coming down. The big danger is that lower standards will become established as normal and the end users will find they can no longer get the range and quality of support they need.
The ILA is urging disabled people to always choose services that are genuinely user-led, run by a registered charity and therefore not putting money into the pockets of private business interests. The charity-run services are guaranteed to be of the highest quality because they are run by pioneers of self-directed support in the interests of clients, not profits.
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Rapid growth in the numbers of people needing to employ their own personal assistants to meet their care needs is creating a labour market problem. People have been finding it harder to recruit suitable PAs
The ILA is developing its own programmes for attracting people into this area of work, as well as working with Skills for Care and other official agencies with responsibilities for workforce development.
Under research funded by the European Social Fund, the ILA has conducted a survey into people's needs in employing PAs and has developed pilots to explore alternative models for meeting the labour market requirements. Reports on the survey and the alternative care models can be downloaded here as pdf files from the documents area of this website.
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The principle of giving disabled people maximum choice and control over the support they need, which is firmly established as official government policy, raises complex issues affecting the relationship between state agencies and individuals.
The local authority social services department is still responsible for establishing how much support each individual is entitled to, but the assessment is now supposed to be a partnership agreement involving the disabled people and their families. Once the assessment is agreed, the individuals then have the right to choose and manage their own support.
This approach raises a lot of questions which are still being considered, and the ILA is engaged in discussions with the authorities and other interested parties to take this debate forward and establish new principles. Questions include:
Successive ILA conferences and several articles in our newsletter Independent Life have stretched current thinking on these and related issues.
Further questions and challenges on these issues are inevitable as Lord Ashley's proposed Independent Living Bill is progressed.
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Government policy on social care is declared in the White Paper "Our health, our care, our say". It is downloadable in various forms from the Dept of Health website: White Paper (alt z).
A lot of it is about intended NHS reform, but there are several sections about significant developments in social care and plans for more multi-agency operation.
Other government policy documents which have contributed to current official thinking and will inform future legislation are "Independence, wellbeing and choice" (March 2005), and "Improving the life chances of disabled people" (January 2005). These are also available for downloading and can be found via the DH website search facility.
Like most government policy documents, these are strong on good intentions but weak on detailed proposals. Much is left to legislators, local authorities and other agencies to try to interpret the intentions and bring them to practical reality, and this often leads to debate and differing views, such as those highlighted under our briefing topic "Social services and clients - a changing relationship".
But whatever changes are proposed, the financial reality is that no more money is being made available for social care. Indeed some local authorities, including West Sussex, are having to look for economies because of effective reductions in government grant allocations.
Self-directed support services including Direct Payments offer major savings for the public purse compared with more traditional social care provision, and this is undoubtedly a factor in the official encouragement of this approach.
The next major legislative impact in this field will be Lord Ashley's proposed Independent Living Bill, which seeks to make the means to independent living a statutory right. This has far reaching implications which will require further fundamental review of how self-directed support is offered and managed.
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From December 2006, all public bodies have had a statutory duty to involve disabled people in how they are run and to state how they are achieving equality for disabled people in the services they provide.
It goes a lot further than previous anti-discrimination legislation and requires all councils, NHS trusts, public agencies and quangos to achieve and maintain pro-active involvement of disabled people in all aspects of their operations.
Disability campaigners are warning that it will be insufficient for public bodies to just produce well-meaning policy documents. They are demanding comprehensive practical measures for integration and they are concerned that many public bodies are failing to meet the legal requirements.
More information is available on the Equality and Human Rights Commission website (see links list in this briefing section).
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This hugely important Bill introduced by Lord Jack Ashley in June 2006 is going through the legislative processes towards becoming an Act of Parliament. It has gained a lot of support and the former Disability Rights Commission said it was only a matter of "when", not "if". However its supporters are struggling to get it dealt with in the House of Commons.
The Bill seeks to make the means to independent living a statutory right for all disabled people, and it has far-reaching implications for all aspects of social care and community provision.
Because of its intention to give far more power to disabled people over so many aspects of their lives, there have been attempts to water down some of its provisions. The disability movement is determined that the bill doesn't get weakened too much before becoming law and is campaigning for support from MPs and other influencers.
Individual disabled people are being urged to contact their own MPs and seek their support for the Bill.
More information about the Bill is available on the websites of the Equality and Human Rights Commission and the National Centre for Independent Living (see links list in this briefing section).
The ILA has taken a lead in developing a West Sussex Centre for Independent Living (CIL). CILs are increasingly recognised as the model for coordinating a wide range of services for independent living in a county or region.
Nearly all the services provided by the best CILs are already provided by the ILA, and by working in partnership with other organisations we can offer a comprehensive range of services and facilities for disabled people in West Sussex.
The combined practical services of the ILA, plus our campaigning, consultation and research activities, mean that West Sussex is at the forefront of promoting and supporting independent living through the CIL concept.
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Self-directed support (SDS). The umbrella term covering the schemes in which disabled people choose and control their own care support. An SDS Programme Board has been established by West Sussex County Council to ensure coordination and common management. The ILA is represented on this board.
Direct Payments (DPs). The original form of SDS and still by far the most common. Currently the funding comes only from social services budgets.
Indirect Payments (IPs). Similar to DPs but the money is paid to a third party (family member or other agent) to administer on behalf of a client who cannot understand or manage a DP account.
In Control. A form of SDS piloted for people with learning disabilities to give more flexible support options. As it developed the DP system was also becoming more flexible, though, and there was some confusion and inconsistencies. The pilot has now ended and some of the practices are accepted across SDS. In West Sussex there is a stated commitment to achieve full coordination but in the meantime there are serious inconsistencies.
Personal Budgets. Yet another pilot intended to bring increased flexibility and scope to the original DP concept. It brings together a wider range of funding sources. In West Sussex the pilot is concentrating on older disabled people.
Individual Budgets. Same as Personal Budgets.
Independent Living Funds (ILF). Funds set up and run by central government to financially support disabled people to live independently instead of in residential care. In effect, a national version of DPs. Some people qualify for both. In West Sussex the take-up of ILF is below average, and the ILA is raising awareness of this important funding source. ILF money can be incorporated in Personal Budgets. A recent review of ILF called for greater integration until it can be phased out as a separately administered system.
Supporting People. A government programme in partnership with local authorities and support agencies providing housing-related services to complement care provision. Its provisions can be incorporated in Personal Budgets
Valuing People. Government strategy for reforming services for people with learning disabilities. The White Paper was published in 2001 but is still used as the basis for much ongoing reform towards independence, choice and inclusion.
Community Equipment Services. Provision, usually by the NHS, of a wide range of home nursing and independence equipment. Can now be incorporated in Personal Budgets.
Access to Work. Jobcentre programme to provide grants for special equipment or facilities to enable disabled people to achieve and maintain employment. Another funding source which can be incorporated in Personal Budgets.
Disabled facilities grants. Another funding source listed as available for incorporation in Personal Budgets. These grants are for adapting residential property to enable disabled people to live there.
Personal assistants. The term generally used for the people employed by disabled people to support their care needs. Some people use term carers instead, but others say this is an incorrect title for this work.
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