Disability

Independent Living Fund (ILF) is history; Now deliver the Care Act for all Disabled People

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Chris Molesworth, an established ILF recipient, with Leah, one of his 4 carers. The comprehensive support which he receives is essential to his well-being, his ability to live independently, and the opportunity to pursue his passion for competitive sailing. The continuation of this level of support is underpinned by the Care Act legislation.

“The cuts in (ILF) support that are being handed out to individuals will leave us without dignity, sitting in our own faeces for hours at a time, dependent on the kindness of friends, family, neighbours and even strangers just to eat, drink and move”  (Disabled People Against Cuts)

“The consequences are that some disabled people in receipt of ILF funding will no longer receive any support at all; and others may find their support package reduced. Many local authorities are not engaging with disabled people on what they plan to do causing increasing anxiety to existing ILF users” (Disability Rights UK)

Independent Living Fund closure fears: ‘I’m going to be screwed’ (Guardian headline 24 June 2015)

For 18,000 severely disabled people across the country, which includes 81 people in Derby, the closure of the Independent Living Fund on 30 June 2015 leaves them with an uncertain future. For the participants, they will have received enhanced financial support for up to 25 years which has allowed them to live an independent life, experience choice and flexibility, pursue hobbies, and engage in the community on an equal basis as others.

The Fund was closed to new applicants in 2010, and from 1st July 2015 the payments stopped being paid by the central fund, and are now being made by the individual’s Local Council. This shouldn’t be a problem but, with funding cuts, poor experience, scare stories and a basic lack of trust, many, if not all, of the 18000 recipients, now fear the worst. And the pressure groups and media are reinforcing this anxiety.

There has been a campaign to Save the ILF, which culminated in a demonstration in the House of Commons in late June.  Is this “last stand” the only future for those on ILF? Is saving the ILF also the best way forwards for those who became severely disabled after 2010? In my opinion, “No” – the ILF “horse has bolted”, but there is a more inclusive option available from April 2015 – the Care Act 2014 which could benefit everyone, not just the few.

What is the Care Act?

The Care Act embodies into legislation the UK’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (2008).

“The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”

The Care Act  is unequivocal in the legal obligations it makes, and it’s guiding principle is all-encompassing.

“The general duty of a local authority, in exercising a function under this Part in the case of an individual, is to promote that individual’s well-being.”

Well-being is defined to include:

(a) personal dignity (including treatment of the individual with respect);
(b) physical and mental health and emotional well-being;
(c) protection from abuse and neglect;
(d) control by the individual over day-to-day life
(e) participation in work, education, training or recreation;
(f) social and economic well-being;
(g) domestic, family and personal relationships;
(h) suitability of living accommodation;
(i) the individual’s contribution to society.

The local authority must consider

“that the individual is best-placed to judge the individual’s well-being

and take into account the importance of

“the individual’s views, wishes, feelings and beliefs; and  the importance of preventing or delaying the development of needs for care and support”

The Statutory Guidelines for the Care Act issued by the Department of Health help to clarify how this should be approached:

Promoting well-being involves actively seeking improvements in the aspects of well-being  set out above when carrying out a care and support function”

“The Act therefore signifies a shift from existing duties on local authorities to provide particular services, to the concept of ‘meeting needs’.  The concept of ‘meeting needs’ recognises that everyone’s needs are different and personal to them. Local authorities must consider how to meet each person’s specific needs rather than simply considering what service they will fit into.”

“..the concept of independent living is a core part of the well-being principle. Supporting people to live as independently as possible, for as long as possible, is a guiding principle of the Care Act. The language used in the Act is intended to be clearer, and focus on the outcomes that truly matter to people, rather than using the relatively abstract term “independent living”.

“Promoting well-being does not mean simply looking at a need that corresponds to a particular service. At the heart of the reformed system will be an assessment and planning process that is a genuine conversation about people’s needs for care and support and how meeting these can help them achieve the outcomes most important to them.”

In summary, this is about a strict legal obligation to ensure and promote a level of well-being which contemplates that the individual can engage in a meaningful and purposeful way in society . This is obliging the Government to ensure that all disabled people enjoy the funding and outcomes originally just the preserve of those on the ILF. As the statutory guidelines state – this is a “reformed system”. Previous experience of cuts, and poor care under the Fair Access to Care Services (FACS) regime is no longer relevant. This is a new beginning….

Derby City Council

Derby City Council have published a comprehensive document under the banner of “Your Life, Your Choice” that details the practicalities by which people can access the benefits of the Care Act.

The process consists of a few simple steps:

  • 1. Assessment – which captures the individuals care needs.
    • This is converted into an “Indicative Personal Budget” through the application of points, and a £/points rate
  • 2. Personal Support plan- a detailed, individual, costed Support plan that delivers the outcomes documented in the assessment.
  • 3. Contract

Although the document is very clear, there were a few areas that concerned me. I raised these questions directly with the Council. Their formal responses are below each question:.

  1. The assessment is a key part of the process. How will the individual be sure that the full details, subtleties and complexities of their care needs ( ensuring the outcomes required by the legislation) are fully documented so that the implications can be recognised in the remainder of the process? Is there a formal buy-off/sign-off procedure?

The customer will be encouraged to complete their My Self-Assessment themselves together with their circles of support (friends, family, advisers etc), and will have the opportunity to include as many details, subtleties and complexities of their care needs as they like.  When they meet with their social worker to finalise the assessment, the customer receives a copy of their assessment to review and put their signature to. They will have ample opportunity to discuss the information recorded with their social worker.  If the customer is unwilling to sign the assessment, we ask a senior social worker to review the assessment. 

  1. In Step 1, the assessment “answers” are converted into points, and then into pounds. There is clearly a risk around assigning points. Inevitably it will be a subjective process and could disadvantage the individual if the initial assessment is flawed in any way or the link between a descriptive answer and assignment of points is under-called. How will this be moderated to ensure fairness/accuracy etc.? Is the points –allocation system sensitive  to the nature of the support required to deliver the care? Is there a straightforward link between the number of points and the number of pounds i.e. £x per point. If so how is this determined?

The results of the assessment are structured in order to calculate the points for the Resource Allocation Scheme. Each of the ten domains has a set of four or five generic answers ranging from “I don’t need any support in this area” through to “I need a lot of support in this area”.  The social worker will use their knowledge and judgement to decide the appropriate answer for each domain. Assessments (and Indicative Budget Allocations) are moderated through a professional supervision process. The points allocation system is the same for everybody. The points are converted to pounds using an Indicative Allocation Table. This works on a sliding scale – the more points accumulated, the more each of them are worth.

  1. The detail of the plan is formulated in Step 2. What happens if the cost of the care needed to deliver the outcomes in the assessment in Step 1 costs more than the budget allocated? Is there a feedback and review ( appeal) mechanism that ensures that the intent of the Care Act/DCC procedure is actually being delivered?

If the cost of a proposed Support Plan to meet the eligible care and support needs exceeds the available Indicative Budget then the case will be subject to a Funding Panel review. The Panel will seek to ensure that all options that would meet the needs at lower cost have been explored.

  1. Will those people who have been on Independent Living Fund support  continue to receive the same level of care outcome as they had before, provided it is consistent with the obligations of the Care Act? If not, how is the Council’s obligation under the Act being met for these people?

Yes, people who have been on Independent Living Fund support will continue to receive support for all their needs that are eligible under the Care Act.

  1. On p11. of the Customer Guide, it states that the personal budget may be affected by Council Policy. In view of the fact that the underlying principles of this initiative are defined in the Care Act 2014 in what way can Council policy disadvantage the individual concerned? Is there an implication that the Council can impose affordability constraints on the personal budgets thus reducing the effect of the care outcomes?

The statement referenced is no longer valid – it’s an artefact from a time when the Council could have elected to only meet Critical care and support needs under FACS. The guide referred to by the enquirer is an old version dated January 2012 and this has been updated for the Care Act.

  1. In Step 3 of the Customer Guide it states that “the support plan will form a contract between you and the Council” – what obligations does that impose on the Council, particularly in respect of level of funding, and timescales of commitment?

The Council undertakes to fund (and potentially commission) the support detailed in the Support Plan, (less the customer’s contribution as calculated by their financial assessment) until the next formal review, or until the customer’s circumstances change, whichever is sooner.  The review period will be set at an appropriate interval, bearing in mind that the Support Plan will always be aiming to maximise independence.

Funding

The cost of the implementation of the Care Act is uncertain. It is extremely difficult to determine how many people will be assessed,  and the extent of additional costs that it will generate. Significant additional money has been budgetted by Derby City Council in its Budget Consultation 2015-2018.

The National Audit Office has reviewed this general issue and recognised that a funding gap may exist as early estimates may be incorrect.

As the Care Act rolls out, the Department (of Health) needs to know quickly if individual local authorities are struggling, and respond. The Department should work with the sector to monitor both the cost of, and demand for, services. The Department should also set out the options to help local authorities minimise the effect of increased demand and cost on service quality. We expect that the Department will need to continue to monitor both phases from 2015-16 until the pattern of demand stabilises.”

It also recognises that, if Local Authorities, or the Department of Health, compromise on the level of the service that the Act demands of them, for the individual (due to a funding gap) , then they are “risking legal challenge”.

Conclusions

The fight to “Save the ILF” is now history and no longer relevant; whilst the Fund served a number of people well, it locks in inequities for other disabled people who just happened to become  disabled within the last 5 years. The issue of ring-fenced funding is a “red-herring”.

The Care Act is the future, and is backed up by a Human Rights Convention and will benefit everyone in need of life-enhancing care. It is important that as many people as possible, who need the support, contact the Council at the earliest opportunity, to be re-assessed, and agree a personal budget and support plan. Only then will the Council and the Department of Health know if there is a disparity between estimated funding and the actual demand. If that should result in providing sub-optimal outcomes for people, then a campaign can be more focussed, positive, constructive, relevant – and be supported by current legislation.

Those people who are transitioning from the ILF during the next year should have their new assessment done before October 2015 so the period of uncertainty is minimised. Unless they currently have an excessively generous package for their level of disability then there is no reason to believe that their care outcomes will be reduced at all.

The future should not be about “Saving the ILF” but about “Delivering the Care Act” – in full – no compromises!

POSTSCRIPT

In order to test the process within Derby City Council I am now working with a locally-based disabled man (wheel-chair bound)  who has previously had his care hours cut to the bare minimum. This means he spends most of the day on his own in his house, has very little recreational time, and feels that his overall health is deteriorating due to this situation. He has limited well-being.  I contacted the Council last week to ask for a re-assessment for him under the Care Act; within an hour we had a meeting arranged.  This journey, which I fully expect to result in a positive outcome, will be the subject of a future article when his care plan is agreed.

6 replies »

    • My ILF ceased a few years ago. Am I able to pursue additional recreational hours now the budget has transferred to my local council ? Tom

      • The issue is not about the transfer of the budget, it’s about the Care Act which came into force on 1 April 2015. Apply for a re-assessment under the Care Act, and provided you are eligible ( based on extent of disability / personal finances etc) then they have a legal obligation to support your “well-being”/”independent living”. That is precisely the action that I am taking now on behalf of a local guy who was not on ILF ( due to timing ) but has limited care hours…and should benefit from the Care Act.

  1. A very detailed and informative article which shows the level of care which should be available soon. Many socially isolated elderly and disabled people could now have a massive improvement in their quality of live. I am looking forward to my care assessment

    Many thanks Russell for the detailed research and factual article

  2. OK, thanks.
    But am I at risk of having my care reduced ?
    Are they required to accommodate all of my recreational needs ?
    How do I start the process ?

  3. It’s difficult for me to comment as I don’t know your personal circumstances, but the risk of reduction is only there if your current support is way in excess of the Care Act obligations.

    The Care Act is not just about covering basic personal needs, but also wider engagement in community, including recreational activities…as detailed in the article. If the lack of this is affecting your well-being, and your requirements are reasonable, then it should be accommodated. You need to contact the Adult Social Care dept in your local Council and ask to be re-assessed.

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