Independent Living Fund: consultation responses

Main Findings

20. The following section documents the findings and views contained in the consultation responses. The format follows the same order of questions in the consultation document.

Responses to the consultation

21. A total of 110 responses were received in response to the consultation. This figure includes collective responses from consultation events hosted by disability organisations, reporting on the individual views of disabled people, carers and other interested parties.

22. The number of responses received, by response category or sector is set out in Table 1 below:

Table 1 - Responses by Sector

Response Category	Number of responses
Individual respondents - both consultation event collective responses and individual written responses	54
Local Authorities	20
User led organisations	16
Voluntary sector and advocacy organisations	11
Community Care Partnerships	3
Care Providers	3
Other	3

General views - protection of existing ILF packages of support

23. The consultation document made clear the Scottish Government's intention that "current recipients should not have their existing funding taken away unless their personal circumstances change and they become ineligible". Whilst this was a statement and not a question within the consultation, the majority of respondents chose to comment on this aspect.

24. There was a broad consensus across the replies that this intention was the right course of action. Voluntary sector, user led organisations and individual respondents widely welcomed the position. Local authorities highlighted that existing ILF users currently rely on their packages of support, and the majority of these stated that this should continue to be honoured.

Question 1

What aspects of the current ILF worked well and what elements did not work so well?

25. The responses identified the importance of the values and principles that underpin the current ILF in supporting independent living, with agreement that these should form the foundation of any successor arrangement. For example, respondents highlighted values of freedom, choice, dignity and control; together with specific areas that funding through ILF enabled, such as flexibility and portability. There was agreement that the ILF has played a vital role in ensuring that disabled people could live independently, preventing people from going into residential care. Many respondents voiced their support for the way ILF previously operated, including low proportionate administrative spend. A number of responses also highlighted how ILF support has impacted on carers, who might in turn be able to maintain or seek employment.

26. Voluntary sector representative organisations and disabled people's organisations pointed to the current values being just as relevant now as when the ILF was set up in 1988. They also suggested the ILF offers a service that local authorities are not in a position to provide. Opinion from these organisations, together with those from individual respondents, was that councils by comparison generally provide a less flexible, more basic level of support.

27. Local authorities acknowledged the important role that the ILF has played in the past; however some suggested that ILF has not kept pace with change. They emphasised that the geographical inequity of its distribution was significant, and reported on other inequalities due to the eligibility criteria of ILF (e.g. excluding those with very high need and older people, and changes over time causing different criteria to apply to individual users). Many councils also highlighted that they are taking forward independent living values through the implementation of Self-directed Support, and that this had superseded ILF. Some councils stressed that that they already support individuals in the same manner as, and in some instances more flexibly than, the ILF.

28. Areas highlighted where ILF has not worked so well generally include overall closure of the scheme to new applications in 2010 and geographical disparities in coverage. Other aspects of concern highlighted amongst the responses include the eligibility criteria, financial assessment and charging criteria, and monitoring requirements; together with some specific elements such considering how employer responsibilities are supported and asking how the fund can support changing need over time.

29. Example comments in response to Question 1:

The 'portability' of ILF from one local authority area to another is very useful and guarantees a continuity of support in the event of moving across boundaries. Voluntary sector organisation.

ILF was a cutting edge progressive approach to the promotion of meaningful independent living for people affected by disability. This has undoubtedly been a vital resource for those who have accessed the fund. Local authority

It is important to continue with existing levels of care. To fail to do this would be potentially disastrous in terms of social mobility and safety Parent of ILF user

ILF afforded much more dignity and respect to the disabled person than sometimes happens with council Individual respondent

Some people felt the monitoring procedure was too onerous and too much paperwork was required at review to prove how the money was spent Disabled people's organisation led event

It increased the opportunities my son could have, helping him with his 24/7 support, access outings and learning support. Parent of ILF user

Question 2

Should the money that becomes available after existing ILF recipients no longer need it be used in the same way for others in the future? If so, why? If not, how else might the money be used?

30. The consistent message across the breadth of responses to the consultation was that any money that becomes available should be used to meet new demand. Many responses from individual respondents and user led organisations highlighted the views that funds should be targeted in the same way as the current ILF, personalised to support individuals to live independently and remain in the community, keeping them out of residential care. Many responses, across all categories of respondent, also proposed that resources should be targeted to those with greatest need. Another area highlighted within a number of responses was that any resource should complement and not replace local authority provision.

31. Generally, local authorities suggested that the resource could be used within wider local authority adult social care budgets and used to fund provision via Self-directed Support which has, they stated, the same aims and objectives as the Independent Living Fund. Many councils also highlighted the need to align ILF and Social Work resources to support independent living outcomes.

32. Respondents highlighted numerous new suggestions for ways
to target funds, with no overall consensus or clear favourite emerging.
The full range of ideas included the following:

• short-term funding
• preventative interventions
• innovation
• community initiatives
• independent housing
• adaptations and equipment
• young people in transition to adult services
• support to transitions from adult to older people services
• investment in capacity building to promote independent living
• reablement
• one-off grants to address particular need
• crisis intervention
• investment in a change fund to assist investment in prevention and innovation
• support adults with mental health issues
• providing more money to existing ILF users to help them meet employer costs.

33. Example comments in response to Question 2:

We believe the fund should open to new need. However, we recognise that people (already) in receipt have been unable to give pay rises to their Personal Assistants for some years. Disabled people's organisation

Sometimes the funding of appropriate equipment can reduce the hours of support needed Individual at a disabled people's organisation led event

I would argue strongly for any extra funding to be used in the same way that it has for my daughter. I would rather that the funds were used for those in greatest, and most critical, need. Based on extreme need and not marginal improvements…….so that everyone understood why. No ambiguity. Parent of ILF user

Attrition and recovery monies from the existing allocation are clearly insufficient to fund new cases on the same basis as protected ILF users. And insufficient to address the geographical and age related inequalities in the current scheme. These monies would best be spent on innovation and prevention Local authority

We must properly support the most fragile ones living out in the community otherwise our hopes for a truly integrated society will fail. Individual respondent

Question 3

If the available resource is simply that which is transferred from the Treasury, how would you like to see it used if it was not to be a continuation of the existing approach?

34. The majority of responses emphasised the importance of protecting and preserving existing ILF packages of support in Scotland. In relation to replicating the existing ILF system to meet further unmet need, there were contrasting views on how such a scheme could be financed in the future and the sustainability of such an approach.

35. Respondents tended to agree that there are clear challenges to the current model's sustainability. Many responses, such as from a number of individual respondents and disabled people's organisations called for new resources to be found to meet new demand. Some organisations proposed that the ILF might be sustainable by looking at other expenditures, external contributors and by re-prioritising resources. The view was expressed that it is down to political will to ensure ILF sustainability and to demonstrate a commitment to independent living through additional investment.

36. Some responses gave opinions as to why the ILF scheme in itself is unsustainable, for example: that this is due to existence of a funding system that stands to one side of mainstream social care; or that this is due to the concept of an 'award for life'; and the suggestion given that ILF acted as subsidy for under resourced social care more generally.

37. Example comments in response to Question 3:

We agree with the Scottish Government that a "Scottish ILF" is unsustainable if based solely on the existing resource. In addition, we do not consider continuing with the existing approach to be desirable. Local authority

The ideal scheme is not available under present levels of taxation. We would be in favour of a higher tax payment as in Sweden Parents of ILF user

New money needs to be found. Inequality for all disabled people needs to be addressed urgently, and this will not be achieved by further disempowering some disabled people in an attempt to create equity across a wider group of people. Equity across disabled people is an indefensible goal. User led organisation

We do not agree with the assertion in the Consultation paper that 'the ILF is not sustainable in its current form' or 'that a Scottish ILF would be equally unsustainable'. This is a matter of political priority, and it runs counter to the Scottish Governments commitment to the 'Vision for Independent Living in Scotland' Disabled people's organisation

Question 4

What innovative ways might there be for increasing the overall amount of money in the pot?

38. A number of respondents, mostly individuals, proposed that increased investment should be provided by the Scottish Government, and reallocated from other budgets. Responses here tended to highlight current double funding or redundant funding, as the respondent saw it.

39. Respondents proposed a number of suggestions for identifying new funding for ILF, with no overall consensus or clear favourite emerging. The range of ideas included the following:

• recovering monies from crime or traffic fines
• ensuring ILF did not fund what other parts of the state would support
• corporate or Lottery funding
• reduced and redirected back office costs from service providers
• increased charging on users (although noting that elsewhere amongst the responses others argued for reduced or no charging)
• increased taxation
• partnership with businesses and/or charities
• using health or NHS funds
• more efficient alignment with Self-directed Support funds
• reinvestment of attrition or recovery monies
• tax credits via HMRC
• a national resource allocation model
• top slicing Scottish Government and/or local authority funds into an ILF budget
• community assets
• tighter ILF administrative costs
• recycling unspent ILF user funds
• assistive technology
• support through volunteering
• match funding with local authority or other funders
• pooled ILF awards as with pooled direct payment or personal budgets
• shared or integrated infrastructures

40. Example comments in response to Question 4:

The Government could consider whether there are opportunities to increase the overall amount of money in the pot by allocating additional funding from other initiatives/programmes that aim to enable people to remain in the community and/or keep them out of hospital. Local authority

An innovative approach to boosting the fund could be to transfer a proportion of Social Work (or other Council-related) funding to the new ILF fund, so that it can purchase more effectively and flexibly - and at lower cost - than it does when managed by Councils. Voluntary sector organisation

We believe there is a compelling argument for drawing on the wide range of budgets which relate to (independent living) to supplement a Scottish resource capable of enabling disabled people to realise independent living. Disabled people's organisation

Scottish Councils spent £16 on social care for adults aged under 65, for every £1 spent by ILF. We need to think more holistically about how rights to independent living are enabled and made real Local authority

If the Scottish Government is genuinely interested in supporting people who are highly vulnerable and disadvantaged, then resources can be found but the willingness to do this has to be present. Individual respondent

Question 5

With any available resource, where is the most effective area to target resources which can have the biggest impact on an individual's ability to live more independently?

41. Consistent with the replies to Question 2, respondents highlighted the importance of targeting resource to those individuals with the highest level of need, providing a personalised approach, and continuing the support to enable disabled people to live independently.

42. Some respondents commented that any ILF focus should not replicate funded systems or processes that were already in place, for example, by replicating areas which local authority social care, welfare benefits, or Access to Work should in principle already cover. These respondents emphasised the importance of additionality of ILF provision.

43. Specific responses to this question tended to focus on the merits of individual ideas, with no overall consensus or favourite emerging. The range of ideas included:

• support for funding for long term conditions
• funding for transitions
• meeting short-term need
• preventative spend
• meeting fluctuating need
• respite and support for carers
• providing personalised supports
• reablement
• buddy care
• palliative need
• high-end care
• support for multiple impairment or complex needs
• support for education or employment
• providing circles of support
• adult change fund
• intermediate care
• placement discharge
• countering social isolation
• meeting older people needs
• reinforcement of Self-directed Support
• innovation
• equipment
• transport
• capacity building
• leisure

44. Example comments in response to Question 5:

We support the use of any money that becomes available being used in a similar way for new applicants with severe physical, mental and learning disabilities…The funds should target individuals based on need. Voluntary sector organisation

The money should continue to be used to support people with significant need to live independently…thorough assessment and planning for an individual via an outcome plan which matches their needs and aspirations. Local authority

Spreading the fund thinly is no answer and just ducks the hard decisions. We are now at a crossroads with this fund…hard decisions need to be taken. Better to be honest…than build up hopes that somehow everyone will get something. Parent of an ILF user

Question 6

Once funding has been devolved to the Scottish Government, which option do you think will be most appropriate for Scotland?

45. This question sought opinion on the administration of the devolved monies, with 4 options for the delivery mechanism set out in the consultation report:

• Option 1 - Local Authorities
• Option 2 - The Scottish Government
• Option 3 - An existing agency or Non Departmental Public Body (NDPB)
• Option 4 - New Partnership and/or Trust

46. Opinion diverged significantly on the model for delivering the legacy arrangements. Of the four options outlined, the majority of responses supported one of two options: Option 1 (Local Authorities), which was favoured by local authority respondents; and Option 4 (a new partnership or trust), which was favoured by individual respondents, disabled people's organisations and voluntary sector organisations. There was minimal support for either of Option 2 (Scottish Government) or Option 3 (an existing agency/NDPB) to take on responsibility for the fund.

47. Local authority respondents and their representatives selected Option 1 as most appropriate. They proposed that as the deliverers of social care, this was the only viable option. They argued that by managing direct payments, they already had much of the infrastructure already in place and that this would be the most cost-effective option. They also articulated that this approach would lead to streamlining systems with the roll out of Self-directed Support and that this would reinforce alignment of ILF with social care provision.

48. A number of local authorities proposed that additional administration costs were needed to deliver Option 1. Some local authorities highlighted that this option would provide opportunities to streamline eligibility criteria to access services, and that this in turn could lead to more people accessing the fund.

49. COSLA, ADSW and a small number of local authorities proposed a system similar to the Scottish Welfare Fund, with a need for clear national operating criteria for administering ILF monies, in order that local authorities can meet the demands consistently across Scottish councils.

50. In contrast to the local authority views, the majority of individual respondents and non-local authority organisations who replied, did so to state their strong opposition to devolving responsibility for ILF to local authorities. Concerns were expressed that local authorities were not best placed to provide these services, with views that the money would end up elsewhere, rather than being spent within social care on ILF.

51. Option 4 was supported by the vast majority of individual respondents, disabled people's organisations and voluntary sector organisations. These responses strongly put the case for a national third sector approach. They argued that a separate body would safeguard against cuts to ILF packages of support. Many respondents also expressed that this would by implication additionally safeguard the local authority provided contribution provided for ILF user packages.

52. A number of supporters of Option 4 also highlighted the existing proportion of UK ILF spend on administration costs, arguing that only by using the third sector, in contrast to local authorities, could a similar level of efficiency be achieved.

53. Individual and voluntary sector respondents additionally responded to this question to commend the consistency of ILF Assessor visit and the portability of a national approach. They suggested that these elements would be lost by devolving responsibility to local authorities, with services likely to be impacted by higher staff turnarounds and the future of the portability element being uncertain. These respondents suggested that a third sector approach would retain ILF as a Fund that supports independent living, reducing the risk that services would not be lost or reduced down. Additional views were that having a separate body from the local authority to administer ILF, whilst resulting in a more bureaucratic experience for the individual, would ultimately allow a greater flexibility for the individual in terms of outcome.

54. Example comments in response to Question 6:

The Council already has the procedures/policies, experienced trained staff - social work, finance and administration staff. The Council has a growing number of direct payments and this will increase on the introduction of the Self Directed Support Act. Staff have experience of awarding and monitoring cash payments. Local authority

We believe that the only way to continue the flexibility, portability, continuity, and human rights focus, offered by the current system, is to administer the funds using Option 4 (a new Trust). Voluntary sector organisation

There was unanimous agreement that funding should not be given to local authorities. From a disabled people's organisation led event

I favour Councils taking on the role. I would worry about the time it would take to set up a Trust. I feel it would be dragged apart by diverse interest groups seeking funding in their own areas and as such would lead over time to the fund being so widely dispersed that it would serve no really useful purpose. Parent of an ILF user

We are opposed to the devolved funds being handed to local authorities. While not in a position to endorse any specific alternative delivery model we do believe that any solution should be underpinned by the…overarching principles of independent living Disabled people's organisation

I would favour a Trust comprising representatives from various expert disability organisations (Voluntary/Third Sector) who really understand the impact of different kinds of disability on peoples' lives and also how best to offer information, support and planning for the future across all the areas disability brings. Individual respondent

Question 7

To assist with our partial Equality Impact Assessment in relation to the future development of a sustainable Fund to support disabled people in Scotland to live independently, please describe any equality issues?

55. Responses to this question tended to highlight the inequities of the existing ILF scheme, the value and importance of protecting and preserving existing access to the Fund, and that this should be extended to others.

56. Individual respondents and support and voluntary organisations highlighted how the existing ILF can bridge the gap between disabled people and the rest of society. They emphasised the importance of preservation and extension of the existing access routes into ILF. Many respondents who replied to this question proposed ways of ensuring fair access and equality in the future. These included the importance of disabled people and carers being involved in planning; appropriate communication with different groups so that they are not disadvantaged; the use of monitoring; application of clear criteria; and applying a human rights based approach.

57. Local authority responses tended to emphasise the inequities of the existing ILF scheme, consistent with their responses to Question 1. For example, they highlighted exclusion of particular groups: people over the age of 65, groups with very high support needs, people in long stay hospital or care homes, disabled people with low level needs; and issues around the existing geographical inequities. Local authorities also stressed the importance of ensuring that there is clear, streamlined eligibility criteria that is consistent for everyone

58. Example comments in response to Question 7:

We agree that a Scottish independent and accountable ILF trust body, which involves disabled people as equal partners is best - and would help to ensure that the Scottish Government addresses its equality duties and human rights obligations Disabled people's organisation

We concur with the findings of the Henwood / Hudson (2007) review that key aspects of ILF are discriminatory e.g. "ILF is characterised by an unacceptably high level of inequity that must be addressed as a matter of the utmost urgency". The ability to remedy these deficits… may mean very slow progress in addressing geographical inequity, and probably little or no extension to older people Local authority

To our knowledge people who have a disability are already subject to inequality and the very fact that we are completing this questionnaire only strengthens that feeling Individual respondent

Simply redistributing the ILF resource among existing users and potential new users…will not serve to address the inequalities between disabled people and non-disabled people Disabled people's organisation

I can see no equality issues arriving. The argument that might surface is how disabled is disabled. In other words, is being blind more of a disability than using a wheelchair? Parent of ILF user

The obvious solution to securing genuine equity is to fully integrate ILF resources into existing local authority social care budgets based purely on statutory assessments applied equally under Scottish law Local authority