Independent Living Fund Working Group: report and recommendations

Discussion

Reopening the previous ILF scheme

15. The Working Group considers that reopening the existing ILF scheme to new users on the same basis of the criteria for the 'Group 2' ILF scheme (which closed in 2010) is not a viable option. This has been ruled out as an approach which is incompatible with the Parameters for opening the new fund, especially given the limitations of the £5 million of new funding available.

A broad and discretionary new ILF scheme that supports independent living outcomes

16. The Working Group's preference is that the new ILF scheme should be broad and discretionary, within the confines of clear eligibility criteria and is aimed at supporting independent living (see definitions of independent living included within Annex B ). The new scheme should also be outcomes based and 'person-led'.

17. 'Person-led' means that, as well as the use of funding being tailored to and prioritising the specific needs of the individual (person-centred), the process itself also maximises the individual's choice and control. For example, this may mean providing access to information, additional support and advocacy to ensure that their voice is heard above those of other stakeholders such as professionals or carers. In essence, it means that they can exercise as much control as they are willing and able to assume over the entire process, including application, assessment, and implementation.

Recommendation 1

The new ILF scheme should be broad and discretionary, within the confines of clear eligibility criteria, is aimed at supporting independent living, is outcomes based, and is person-led.

Interaction with services provided by statutory agencies and other non-statutory organisations

18. The new ILF scheme should be additional and complementary to services provided by statutory agencies and other non-statutory organisations. It is not the role of the new scheme to replace existing statutory services, or substitute for delivery of their wider duties for provision of social care.

19. The Group notes that in many cases, cooperation with agencies such as local authorities might be crucial for providing a successful intervention via ILF support and ensuring that an individual has appropriate sustained support over the longer term. This would depend on how to deliver the best outcome for the individual. Where a partnership is necessary ( i.e. in the best interests of the individual disabled person, as defined by them), then a partnership approach should be followed, with the agreement of the individual. Therefore, depending on the needs of the individual, a partnership approach involving relevant statutory agencies might be part of the overall provision of ILF support. However provision of ILF support in itself should not be dependent on the input of a statutory authority.

20. The aspiration for the application process for the new ILF scheme is that it should seek to establish whether the funding that is being sought would not otherwise be provided by a statutory authority or existing non-statutory organisation. The Working Group acknowledges, however, that there may be practical difficulties in ensuring this approach.

21. The new ILF scheme should have the flexibility to be reviewed and changed in the context of future changes impacting on the wider Scottish policy landscape; including the devolution of social security powers and health and social care integration.

Recommendation 2

The new ILF scheme should be additional and complementary to services provided by statutory agencies and other non-statutory organisations.

Recommendation 3

Dependent on the needs of the individual, a partnership approach, involving relevant statutory agencies might be part of the overall provision of ILF support. However, it is important to deliver the best possible outcome for the individual, and provision of support in itself should not be dependent on the input of a statutory authority.

Recommendation 4

The new ILF scheme should have the flexibility to be reviewed in the context of future changes impacting on the wider Scottish policy landscape.

Eligibility Criteria

22. Use of the new fund should be outcomes focused and based on individual needs, as defined by the individual, with provision of information, additional support and advocacy as required. The list of areas that could be supported by the fund should not be overly prescriptive, and the fund should be discretionary and flexible enough to tailor to individual needs and outcomes, within the confines of agreed eligibility criteria.

23. There should be age based eligibility criteria, set within the range of age 15 to state pension age. The actual age criteria that are applied should be relevant to the selection of the priority areas for phased implementation, discussed within paragraphs 40 to 43 below.

24. Access to the new ILF scheme should depend on there being evidence of disability or impairment. The Working Group acknowledges that receipt of the care component (at any rate) of Disability Living Allowance ( DLA) or Personal Independence Payment ( PIP) (or a future replacement Scottish benefit) may be considered as a means to verify evidence of disability. However this is not the only method of doing so, and other ways of doing this should be considered.

25. Existing levels of local authority support should not be a condition of eligibility for the new ILF scheme.

Recommendation 5

Use of the new fund should be outcomes focused and based on individual needs, as defined by the individual, with information, additional support and advocacy provided as required.

Recommendation 6

The list of areas that could be supported by the fund should not be overly prescriptive, and the fund should be discretionary and flexible enough to tailor to individual needs and outcomes, within the confines of agreed eligibility criteria.

Recommendation 7

There should be age based eligibility criteria for the new scheme. The actual age criteria that are applied should be relevant to the selection of the priority areas for phased implementation (outlined within paragraphs 40 to 43 below).

Recommendation 8

Access to the new ILF scheme should depend on there being evidence of disability or impairment. Receipt of the care component (at any rate) of Disability Living Allowance ( DLA) or Personal Independence Payment ( PIP) (or a future replacement Scottish benefit) may be considered as a means to verify evidence of disability. However this is not the only method of doing so, and other ways of doing this should be considered.

Recommendation 9

Local authority support should not be a condition of eligibility for the new ILF scheme.

Minimum and Maximum Awards

26. The new ILF scheme should not have a minimum level of award.

27. The new ILF scheme should have a maximum level of award, in order to allow as many people as possible to benefit from the fund.

Recommendation 10

The new ILF scheme should not have a minimum level of award.

Recommendation 11

The new ILF scheme should have a maximum level of award.

Reapplications

28. There should be the possibility of reapplications to the new ILF scheme. However new applications that meet the criteria for award should be prioritised ( i.e. assuming that there are applications from individuals who present a similar level of need, it is the new applicant who should be prioritised).

Recommendation 12

There should be the possibility of reapplications to the new ILF scheme. However new applications that meet the criteria for award should be prioritised.

Constraints and Limitations for the new ILF scheme

29. The Working Group acknowledges the limitations of the £5 million per year available for the new ILF scheme, and therefore recognises that there is a need to prioritise support by narrowing the population that might be supported under the policy.

30. The Group notes that amongst all of the areas that might be supported by the new ILF scheme, there is potential for overlap with other services, particularly those delivered by statutory agencies.

31. The Group also notes that there are currently many unknowns in how a new ILF scheme might operate, due to an overall existing lack of data to indicate the numbers that might seek to access a new scheme. This is therefore a delivery risk for the long term financial sustainability of the new ILF scheme which will need to be managed and mitigated.

Time Limits

32. Due to the constraints of the available funding, outlined in paragraphs 29 to 31, including the need to ensure long term financial sustainability of the new ILF scheme, ILF awards should be time limited, with a defined end date that is linked to defined outcomes.

Recommendation 13

Awards under the new ILF scheme should be time limited, with a defined end date that is linked to defined outcomes.

Phased implementation of the new ILF scheme

33. Due to the constraints and limitations outlined in paragraphs 29 to 31, the Working Group recommends that the new ILF scheme should be implemented in a ' phased' way.

34. The initial phasing for implementation should focus on a defined cohort, demographic or focus for the fund.

35. Phasing would also help to manage people's expectations for the new scheme.

36. Evaluation should be built into the approach from the start. The impact of the policy on supporting disabled people to achieve independent living should be measurable and the opportunity to learn and adjust is integral to the phased implementation approach.

37. The initial phase for implementation should be reviewed after a defined period, taking into account a range of factors such as take up, how the fund is being used in practice, and the outcomes that are achieved for the individuals concerned.

38. Future phasing for the new ILF scheme should depend on the learning from the initial phase. This would provide the opportunity to focus on enabling additional cohorts to access the scheme, or making adjustments to promote sustainability.

39. Future policy development for ILF should be done in co-production with disabled people and carers, and in partnership with relevant organisations and agencies.

Recommendation 14

The new ILF scheme should be implemented in a 'phased' way.

Recommendation 15

Evaluation should be built into the approach from the start.

Recommendation 16

The initial phase for implementation should be reviewed after a defined period. Future phasing for the new ILF scheme should depend on the learning from the initial phase.

Recommendation 17

Implementation and future policy development for ILF should be done in co-production with disabled people and carers, and in partnership with relevant organisations and agencies.

Phased implementation priorities

40. The Group have identified 4 priority areas for phased implementation of the new ILF scheme:

• Area 1 - To support discharge from residential, nursing or long stay hospital care back into the local community or local area
• Area 2 - To support the transitions from child to adult supports
• Area 3 - To support an individual to move out of the family home into an independent living setting
• Area 4 - To support a disabled adult who becomes a new parent, or to support with parenting

41. From this list, the Group considered Areas 2 and 3 to be the strongest candidates for the initial phases of the implementation of the new ILF scheme. The Group identify the need to target a single area for the first phase of implementation and agreed that this should focus on Area 2, supporting the transitions from child to adult supports. This selection was based on the factors outlined above, including a comparatively easily defined, relatively narrowly drawn cohort, sufficient existing data to be able to gauge possible take-up, and thus the comparative ease of being able to manage expectations and promote sustainability.

42. Although they were not able to identify this priority area for the first phase, the Group were also very supportive of Area 3, to support an individual to move out of their family home into an independent living setting. However, the Group noted that a further evidence base was needed both on the numbers that could be supported and the kinds of interventions which would be effective and sustainable. The Group therefore considered that further work should be done to gather such evidence to establish a clearer idea of likely demand and potential use. The Group agreed that it would be desirable for this work to proceed in parallel with the implementation of Area 2, so that that this might enable Area 3 to be prioritised for the next implementation phase.

43. The Group additionally noted that if Area 2 is targeted for the first phase of implementation, that there may be some young disabled people who might seek to move out of their family home as part of the independent living outcomes for which they seek support. Provided they meet the eligibility criteria, those individuals could potentially apply for this support from an Area 2 focused ILF scheme. This might provide an opportunity to test the viability of a scheme that is able to support disabled people to move home, provided that this is tested within the boundaries of a scheme that supports child to adult transitions overall.

Recommendation 18

The 4 priority areas for phased implementation of the new ILF scheme should be:

• Area 1 - To support discharge from residential, nursing or long stay hospital care back into the local community or local area
• Area 2 - To support the transitions from child to adult supports
• Area 3 - To support an individual to move out of the family home into an independent living setting
• Area 4 - To support a disabled adult who becomes a new parent, or to support with parenting

Recommendation 19

From the list of priority areas, Areas 2 and 3 should be the focus of the initial phases of implementation of the new ILF scheme. The very first phase of implementation should focus on Area 2 - supporting the transitions from child to adult supports.

Recommendation 20

Further work should be done to gather evidence regarding the potential implementation of Area 3 - supporting an individual to move out of their family home into an independent living setting - with a view to identifying whether this area should be the subject of the next implementation phase.

Communication of the outputs from the ILF Working Group

44. The Working Group's report should be made publically available in a range of accessible formats and communicated to those who have contributed to the Group's work, including the attendees who participated in the ILF Scotland run engagement events.

Recommendation 21

The Working Group's report should be made publically available in a range of accessible formats and communicated to those who have contributed to the Group's work, including the attendees who participated in the ILF Scotland run engagement events.