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Independent Living Fund (ILF) Co-production

Engagement Events

Discussion Paper to Develop New Fund Policy

Options

June – July 2016

Contents

Introduction

Theme A – A time-limited ILF award to support independent living

for a specific life event

Theme B – A single grant ILF award to support independent living

Additional Discussion Questions

Summary List of Questions

Annex A - Independent Living Fund (ILF) Working Group -

Background

Annex B ILF Working Group Options Appraisal Parameters for

Opening the ILF to New Users

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Introduction

1. This discussion paper is for the Independent Living Fund (ILF)

stakeholder events to gain feedback on the policy to open the ILF to new

users. The paper presents 2 broad policy themes for opening the fund,

together with discussion questions. These themes are based on the

initial discussions from the ILF Working Group, which has been meeting

since April to develop the policy options.

2. The ILF Working Group is a co-production working group, with

members including Scottish Government, ILF Scotland, disabled

people’s organisations, local authorities and representative organisations

(including disability organisations and carers). Further information about

the Working Group is provided at Annex A. Additionally, Annex B

contains the Working Group’s agreed set of options appraisal

parameters, which they will use to develop the policy options.

3. The starting point for identifying the policy options for the new ILF

scheme is taken from the responses to the Scottish Government

consultation on the future of ILF, conducted in 2013. The work also

draws on learning from other sources, such as the review of the UK ILF

schemes, conducted in 2007 (Henwood & Hudson).

4. A key consideration for the Working Group, that is also apparent in

the feedback from the 2013 consultation, is that if a new scheme is

opened on the same basis as the previous ILF scheme (using the most

recent ‘Group 2’ eligibility criteria – applicants aged 16 to 64, in receipt of

higher rate DLA/PIP and a Local Authority ‘threshold’ contribution of

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£340 per week), that new funds would likely be insufficient to meet

demand. With £5 million of funds available for the new ILF scheme, the

Working Group has therefore discounted the policy option of re-opening

the ILF based on the previous ILF ‘Group 2’ criteria. They viewed this

policy option as being unaffordable and therefore sought to identify a

new approach that would make a positive contribution to independent

living by disabled people and prioritise support for those with greatest

need.

5. The 2 broad themes described in this paper try to offer this new

approach. The first theme is to offer a time-limited ILF award, which

would aim to support independent living outcomes during a specific life

event or life transition. The second theme is for ILF support to be

offered as a single ‘one-off’ grant payment to assist with independent

living. Both themes are presented in more detail alongside their

discussion questions.

6. The themes and questions in this paper have been prepared for

the stakeholder events by the Scottish Government ILF Policy and

Sponsorship Team, building on the ILF Working Group’s initial

discussions.

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Theme A – A time-limited ILF award to support

independent living for a specific life event

Purpose

7. The purpose of this theme is to offer a weekly based ILF award

that supports independent living for disabled people who need help to

deal with a specific life event or life transition.

How the new scheme might work

8. The disabled person would receive a weekly based payment of ILF

support, which could then be used to purchase services (for personal

assistant support or agency care), in a similar way to the previous ILF

scheme. The main difference is that the award would not be an ‘award

for life’. The focus would be to provide support over a defined period of

time, to assist with a specific life event or transition in a person’s life.

9. The package of support identified for an individual would need to

focus on outcomes that would be brought about by achieving the life

transition. Essentially, ILF support would be used to fund the ‘bridging’

costs of moving from one circumstance to another. As ILF funding would

be time-limited, once the transitional phase or event is complete, the

funding would stop. This means that from the outset, longer term

support arrangements would need to be considered, including

succession plans once the time-limited award stops.

10. Under the existing ILF scheme, ILF payments can be used to fund

all forms of personal and domestic care. This is known as qualifying

support services (QSS). We would be interested to hear views on

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whether the existing QSS should transfer to a time-limited award

scheme.

Life events or life transitions that could be supported by a time-

limited ILF award

11. Some examples of the kind of life event or life transition that could

be supported by the scheme are:

to support discharge from residential, nursing or hospital care back

into the local community or local area

to support the transitions from child to adult support services

to support the transitions from adult to older person living

arrangements.

intensive short-term support to help an individual learn skills for

independent living (re-ablement) and/or to fund early intervention

for sustaining independent living

Support that doesn’t duplicate existing service provision

12. The ILF Working Group took the view that the new ILF scheme

should not fund outcomes that would be otherwise funded by other

agencies. This is the idea of ‘additionality’, meaning that ILF funding

would be additional to other kinds of support provided by local

authorities and other services providers. Examples of services that

might be funded by others include: Local Authority Direct Payments

under Self-directed Support; existing placement costs; existing health

authority costs; local authority arrangements; and existing support for

transitions.

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Questions

Question 1: What do you think of the list of life events that a time-

limited ILF award might support?

Question 2: Is there anything missing from the list of life events?

Question 3: Do you have views on maintaining the existing

qualifying support services (QSS) definition (personal and

domestic care)?

Question 4: Do you have views on ensuring that a time-limited ILF

award is not used to fund outcomes that can be delivered by other

agencies?

Award conditions

Eligibility

13. In the previous ILF scheme, funds were available to:

people aged 16 to 64 at the time of application; and

in receipt of high rate care component of DLA or enhanced PIP

14. We would be interested to hear views on whether these eligibility

criteria should transfer to the new ILF award scheme.

Minimum and maximum awards

15. Award payments should be sufficient to support the independent

living outcomes for the individual disabled person. To help achieve this,

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payments could be subject to a minimum or maximum award. We would

be interested to hear views on what a minimum or maximum sum might

be.

16. There is no minimum award for the existing ILF scheme. A

minimum award would help ensure that the ILF is cost effective to

administer. For example, the costs of administration – which might

include ILF assessor visits and casework – should not be greater than

the cost of the support package given to the disabled person.

17. Having a maximum award could help ensure that as many

disabled people as possible in need of this support could benefit from

the scheme.

18. To give you an idea of figures to start your discussion, the

minimum award level could be set at something like £60 per week and

the maximum at something like £250 per week.

Duration of award

19. For similar reasons to having a minimum and maximum award

sum, the new scheme might feature a minimum and maximum award

duration. Having a minimum duration also helps to ensure that the ILF

award scheme is cost effective to administer. Having a maximum

duration would help ensure that the award is used to support the life

event or life transition, up until the disabled person transfers to more

permanent arrangements.

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20. To give you an idea of possible timings to start your discussion, the

minimum duration could be set at something like three months and the

maximum at one year.

Local Authority Input

21. Under the previous ILF scheme, eligibility was linked to a certain

level of local authority input – the ‘threshold sum’. We would be

interested to hear views on whether a link to local authority provision

should also be part of a new scheme.

Questions

Question 5: What are your views on retaining the previous ILF

eligibility criteria of supporting disabled people aged 16-64 who are

on higher rate DLA or PIP?

Question 6: What are your views on having a minimum and

maximum ILF award sum?

Question 7: What are your views having a minimum and maximum

duration of award (the length of time an individual would receive

ILF support)?

Question 8: Do you have any views on whether ILF support should

be linked to local authority input?

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Theme B – A single grant ILF award to support

independent living

Purpose

22. The purpose of this theme is to offer a single ‘one-off’ grant award

payment to support independent living.

How the new scheme might work

23. The disabled person would receive a single payment of ILF grant,

which could then be used to purchase equipment, support or services for

independent living. This would be a single grant, rather than continued

support as in the previous ILF scheme. There is potential within this

theme to fund a broad range of outcomes that might be wider than the

‘personal and domestic care’ qualifying support services under the

previous ILF scheme.

Areas that could be supported by a single grant ILF award

24. Some examples of areas which could be supported by this scheme

are:

equipment (e.g. technology, aids and home equipment)

adaptations

emergency care and support

short breaks (e.g. respite, holidays, or time-outs from using

mainstream services)

alternative therapies

temporary care and support

additional transport costs

tele-care

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household appliances

support for business start-up

additional support during a hospital admission or residential respite

admission

Support that doesn’t duplicate existing service provision

25. The ILF Working Group took the view that the ILF scheme should

not fund outcomes that would otherwise be funded by other agencies or

duplicate other services.

26. Examples of single payment supports that might be funded by

others include: local authority occupational therapy provided support and

equipment (e.g. household adaptions and bath aids); NHS provided

equipment; charitable grants and trust funded individual support and

respite; local authority direct payments under Self-directed Support; and

Scottish Welfare Fund support.

Questions

Question 9: What do you think of the list of areas that could be

supported by single grant ILF awards?

Question 10: Is there anything missing from the list of areas that

could be supported?

Question 11: Do you have any views on ensuring that ILF grants do

not duplicate other services?

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Award conditions

Eligibility

27. In the previous ILF scheme, funds were available to:

people aged 16 to 64 at the time of application; and

in receipt of high rate care component of DLA or enhanced PIP

28. We would be interested to hear views on whether these eligibility

criteria should transfer to a new single grant ILF award scheme.

Minimum and maximum grant awards

29. Grant payments could be subject to a minimum or maximum

award. We would be interested to hear views on what a minimum or

maximum grant should be.

30. A minimum grant award would help ensure that the ILF is cost

effective to administer, whilst a maximum award could help ensure that

the maximum number of disabled people could benefit from this support.

31. To give you an idea of figures to start your discussion, the

minimum grant level could be set at something like £200 and the

maximum grant at something like £2,000.

Reapplications

32. In order to ensure equity of access and maximise the numbers of

disabled people who could benefit from the grant scheme, there could

be limits on reapplications to the scheme. Examples of possible limits

are having a maximum amount of eligible grant for a single individual, or

having a length of time before a reapplication would be accepted.

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Group grant applications

33. The previous ILF scheme only supported individual applicants with

individual outcomes. It would be possible to operate a new ILF grant

scheme that could expand support, with an offering aimed at both

individuals and groups. For example, this could allow grant to be offered

to purchase equipment or services for a group of disabled people that

then helps to deliver independent living outcomes for all the individuals

within that group.

Questions

Question 12: What are your views on retaining the previous ILF

eligibility criteria of supporting disabled people aged 16-64 who are

on higher rate DLA or PIP?

Question 13: What are your views on having a minimum and

maximum single grant award?

Question 14: What are your views on allowing reapplications to a

single grant award scheme?

Question 15: Do you have views on allowing group applications to

a single grant award scheme?

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Additional Discussion Questions

General Questions

Question 16: Do you have a preference between Themes A and B?

Question 17: What do you think is the most important area that ILF

should support?

Question 18: Is there anything missing that is not covered by the

options presented?

Question 19: Do you have any other thoughts or comments on the

options presented?

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Summary List of Questions

Theme A – A time-limited ILF award to support independent living

for a specific life event.

Question 1: What do you think of the list of life events that a time-limited

ILF award might support?

Question 2: Is there anything missing from the list of life events?

Question 3: Do you have views on maintaining the existing qualifying

support services (QSS) definition (personal and domestic care)?

Question 4: Do you have views on ensuring that a time-limited ILF award

is not used to fund outcomes that can be delivered by other agencies?

Question 5: What are your views on retaining the previous ILF eligibility

criteria of supporting disabled people aged 16-64 who are on higher rate

DLA or PIP?

Question 6: What are your views on having a minimum and maximum

ILF award sum?

Question 7: What are your views having a minimum and maximum

duration of award (the length of time an individual would receive ILF

support)?

Question 8: Do you have any views on whether ILF support should be

linked to local authority input?

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Theme B – A single grant ILF award to support independent living

Question 9: What do you think of the list of areas that could be

supported by single grant ILF awards?

Question 10: Is there anything missing from the list of areas that could

be supported?

Question 11: Do you have any views on ensuring that ILF grants do not

duplicate other services?

Question 12: What are your views on retaining the previous ILF eligibility

criteria of supporting disabled people aged 16-64 who are on higher rate

DLA or PIP?

Question 13: What are your views on having a minimum and maximum

single grant award?

Question 14: What are your views on allowing reapplications to a single

grant award scheme?

Question 15: Do you have views on allowing group applications to a

single grant award scheme?

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Additional Discussion Questions

Question 16: Do you have a preference between Themes A and B?

Question 17: What do you think is the most important area that ILF

should support?

Question 18: Is there anything missing that is not covered by the options

presented?

Question 19: Do you have any other thoughts or comments on the

options presented?

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Annex A

Independent Living Fund (ILF) Working Group -

Background

1. The Independent Living Fund (ILF) Working Group is a working

group of co-production partners with an advisory remit, which is

convening to develop the policy options for opening the ILF to new users

in Scotland, with new funding of £5 million per year committed from

Scottish Government to do this.

2. The Working Group is co-chaired by Scottish Government and ILF

Scotland, with membership including disabled people’s organisations,

local authorities, and representative bodies (including disability

organisations and carers). The Working Group additionally includes

members who have direct knowledge and understanding of living with an

impairment with high support needs, as a disabled person and as a

carer.

3. The Group’s considerations include: developing and appraising the

policy options for opening the ILF to new users, including the eligibility

criteria; considering the affordability of the options; and engaging with

disabled people and wider stakeholders. The stakeholder events will

contribute to the Working Group’s consideration of the policy options and

the Group will consider the outputs from all the events alongside their

more detailed work.

4. The Working Group met for the first time in April 2016. So far, the

Group has agreed a set of options appraisal parameters for the new

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scheme. The ‘parameters’ will be used by the Working Group to develop

and appraise the policy options for re-opening the ILF scheme and act

as principles for the new policy against which each option can be

assessed. The full list of parameters as agreed by the Group is included

at Annex B.

5. At the Working Group meeting of 31 May, the Group also had an

initial discussion on a detailed list policy options for opening the ILF.

While there is still much work to be done to refine the options and

develop the recommendations for the criteria for the new ILF scheme,

there are 2 broad themes emerging from the Group’s initial discussion.

These policy themes are presented in the discussion paper for

consideration at the stakeholder events.

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Annex B

ILF Working Group Options Appraisal Parameters

for Opening the ILF to New Users

Purpose

The options appraisal parameters have been developed by the

Independent Living Fund (ILF) Working Group for developing the policy

to open the ILF to new users. The parameters will be used by the Group

to develop and appraise the policy options. The parameters will act as

principles for the new policy against which each option can be assessed

in turn to see how well it will deliver the desired outcome.

Parameters

1. The policy advances disabled people’s Human Rights and is

based on the social model of disability (see definitions below).

2. The purpose of the policy is to support independent living (see

definition below).

3. The policy should be person centred and outcomes based.

4. The policy should prioritise support for those with greatest need,

as determined by the criteria.

5. The policy has transparent rules of eligibility and the application

process is proportionate and easy to access.

6. The new policy enables equity of access within its defined criteria.

7. Awards under the policy are portable across Scotland.

8. The policy is capable of being viewed as making a positive

contribution to independent living by disabled people and their

carers.

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9. The policy complements the existing Scottish policy landscape, for

example Self-directed Support, Health-Social Care integration and

devolution of welfare powers to the Scottish Parliament.

10. The policy provides additional resource which does not substitute

for an existing service provision, care or source of funding.

11. The policy is able to be delivered over the longer term, from the

committed funding of £5 million per year.

12. The policy should support independent living for sufficient numbers

of disabled people to warrant the existence and administration of a

distinct funding scheme.

13. The impact of the policy on supporting disabled people to achieve

independent living should be measurable.

14. The policy can be delivered within the existing infrastructure and to

the project timescales, and is cost effective to administer.

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Definitions

Social Model of Disability

The individual/medical model of disability sees disability as an inevitable

consequence of impairment. By contrast, within a social model,

disability is seen as the disadvantage that people with impairments

experience when they encounter avoidable physical, organisational,

institutional or attitudinal barriers to independent living. This is the

definition of the social model that will be used for the purposes of the

Working Group’s considerations.

Independent Living

Independent Living in Scotland (ILiS) definition

Independent living means all disabled people having the same freedom,

choice, dignity and control as other citizens at home, at work and in the

community. It does not necessarily mean living by yourself or fending for

yourself. It means rights to practical assistance and support to

participate in society and live an ordinary life1.

Disability Research on Independent Living & Learning (DRILL)

definition of Independent Living

All disabled people having the same choice, control, dignity and freedom

as any other citizen to achieve their goals at home, in education, at

work, and as members of the community. This does not necessarily

mean disabled people doing things for themselves but it does mean

1 Independent Living – A Shared Vision joint statement signed by the Scottish Government, COSLA, and the Independent Living in Scotland (ILiS) Steering Group 2009.

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having the right to practical assistance based on their choices and

aspirations

15 Rights for Independent Living

For the purposes of the Working Group’s considerations, independent

living is defined by the ‘15 Rights for Independent Living’ as set out by

Glasgow Disability Alliance in its Manifesto for Action: an independent

living strategy for Glasgow (2013):

1. A decent income, including state benefits for those unable to work.

2. Accessible and adapted housing.

3. Personal assistance.

4. Accessible and readily available information.

5. Communication support.

6. Advocacy and working towards self advocacy.

7. Technical aids, equipment and technology.

8. Inclusive education and lifelong learning.

9. Equal opportunities for employment and training for work.

10. Accessible and inclusive healthcare provision.

11. Peer support including from disabled people and their organisations.

12. Full access to our environment.

13. Fully accessible and affordable transport.

14. Full social, civic and judicial participation.

15. Legal Rights and legal advice.

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UN Convention on the Rights of Persons with Disabilities

(UNCRPD)

The right to independent living is established in Article 19 of the

UNCRPD:

Article 19 - Living independently and being included in the

community

States Parties to this Convention recognize the equal right of all persons

with disabilities to live in the community, with choices equal to others,

and shall take effective and appropriate measures to facilitate full

enjoyment by persons with disabilities of this right and their full inclusion

and participation in the community, including by ensuring that:

a. Persons with disabilities have the opportunity to choose their place

of residence and where and with whom they live on an equal basis

with others and are not obliged to live in a particular living

arrangement;

b. Persons with disabilities have access to a range of in-home,

residential and other community support services, including

personal assistance necessary to support living and inclusion in

the community, and to prevent isolation or segregation from the

community;

c. Community services and facilities for the general population are

available on an equal basis to persons with disabilities and are

responsive to their needs.