The Independent Living Funds is now closed 2017

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24 April 2018: East Renfrewshire User Meeting

24 April 2018
11.00am to 3.00pm

11 people (ILF users and carers) attended the meeting at the Redhurst Hotel in East Renfrewshire, facilitated by members of the local council’s Social Work team.

The agenda asked the group to consider and give their views on:

· What does “independent living” mean to them?
· What works and doesn’t work about the ILF?
· How should users be involved in decision-making at the ILF, and what are the best ways to consult?
· What might a “regional presence” for the ILF look like?

The themes for the day were introduced by a brief presentation by the Public Communications Manager.

A summary of the discussion follows:

What does “independent living” mean to you?

· “Freedom” – getting help to live life, “go out and have fun”

· Freedom to live in your own house

 CHOICE – to have extra support within the family home

· Enables a disabled person and their main carers to have choice and for their life choices to be respected

· Gives full-time carers time for themselves – can help save husband/wife relationship

· Opportunity to develop life skills – particularly users with learning difficulties

· Diversity of opportunity – people can access “community life” – reducing feeling of isolation

· Opportunities to widen circle of friends and social group

· Learning communication skills

· Most important thing about ILF is the “financial” – ability to have support when needed

· “Self-directed care is a cheaper, better option than residential care”

What works about ILF and what improvements could be made?

· Monitoring how the money is spent: for people who are confident and able to manage their care package, the ILF’s lack of intervention is appropriate, but for less capable it can cause problems

· Parent carers do not get a break once ILF is paid because they still have to manage the care package and ensure standards are met

· Too much paperwork required

· ILF should help ensure standards are met – if Local Authority care manager is not doing this, ILF should put pressure on them to do their job

· Who will manage the care so that family carers can go on holiday, instead of shifting this responsibility to the family?

· ILF should have more of a “face” – meetings like this show ILF is “human”, had previously assumed the organisation was “grim and forbidding” and money “came from up above”

· Always different names at the bottom of letters, people happier to phone ILF if they have consistent names (regional organisation may have resolved this)

· Some ILF Assessors treat the asssessment visit like an interrogation and appear to not want to give more money – “treat the money like it’s their own”

· Why involve ILF Assessors at all? – would prefer Local Authority assessment

· Other people have had positive experiences of ILF assessment process – useful to have independent assessment of need

· Everyday communication with ILF is very good

· Letters from ILF about changes to threshold sums and priority groups were unclear and difficult to understand

· People have not been made aware of the changes – Why no TV/media coverage?

· Concern that ILF will not be accessible to future generations – how will their needs be met?

· People not sure how to register their issues with changes to ILF

· "Commitment to consultation is a joke if cuts can be made without telling users first"

· Disability equality is less possible than ever with cuts to services

Consultation and involving users in decision making

· Why were users not consulted prior to the changes to the threshold sums?

· “Service users should establish priority groups, not the Department for Work and Pensions”

· Provide clear information on which to consult, NOT a presentation skimming over political issues

· Provide independent information so people are in full possession of the facts

· People should be sent questionnaires regarding ILF prioritisation with a balanced discussion paper available

· Find ways to involve people who would not normally get involved or find regular methods of consultation difficult/prohibitive

· Important that services listen to appropriate people during consultation – could be disabled person, but also main carer or advocate – many various voices are valid in the process

What might a “regional presence” for the ILF look like?

· ILF could fund ILF Contact Officers to put on roadshows/consultation events with/without ILF staff

· More regional meetings and regional groups

The Independent Living Funds is now closed 2017
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