202309 - Northern Ireland Advisory Group Minutes - September 2023 (Easy Read)

The meeting happened on 19 September from 11.30am to 3pm.

The meeting happened in 2 ways:

• on Zoom
• at the Mount Conference Centre in Belfast

Who could not come to the meeting?

Collette Jones
Kieran McCarthy (Vice Chairperson)
Michaela Hollywood

• Lee will use a new way to arrange future meetings and not use doodle polls

• Lee to re-send links from Michaela to Stakeholder Group about PA support and the future landing programme

• Lee to send the presentation out on PA support and training from Mervyn Bothwell (Complete)

These 3 actions have happened.

• assessors from Northern Ireland will find recipients to be interviewed by Finbarr as part of the social return on investment evaluation work

A recipient is someone who gets ILF money.

A social return on investment looks at the benefits of a project that are not just about money.

For example it could support people’s wellbeing, or help to reduce inequality.

David welcomed everyone to the meeting and said when guests would be taking part in the meeting.

Lee explained where the fire exits are.

David asked that the minutes have more detail about who is giving information and speaking at the meeting.

The minutes of the last meeting were approved and the ILF Communications Team will put them on the website.

Actions from the last meeting:

• Colin and Linda to talk about putting the PA rate up by 12 per cent before April 2023 and backdating it to 1 April 2022.

• Lee to share links from Michaela to the communication team on PA support and future landing programme.

Both these actions have been done.

Niqi asked if the Charter for Involvement meetings were going ahead.

Linda said this is on the agenda for the meeting.

David is pleased that the Fund in Scotland will re-open in April 2024.

Colin said there is still no Minister and no Executive in the Northern Ireland Department of Health.

Colin has spoken with Jack Blaik and will finish information for the Department of Health about:

• the work being done by the Scottish Government to have the Fund re-opened
• there is likely to be pressure to re-open in Northern Ireland

Caroline said that disabled people in Northern Ireland would not get the same amount of funding as Scotland.

Robert and Niqi supported this statement and agreed with David’s suggestion of writing to the Permanent Secretary.

David said we must:

• raise the re-opening of the Fund with all the main political parties in Northern Ireland
• get re-opening included in the Programme for Government

The Group agreed that David would invite the Permanent Secretary to a meeting to discuss the re-opening of the Fund.

David talked about a report about the United Nations Convention on the Rights of Persons with Disabilities.

The report mentions the ILF and that it needs to re-open.

David will give more information about the UN Convention at the next meeting.

The UN Convention and how it links to the Fund, will be discussed later in this meeting.

David will include the UN Convention in his letter to the Permanent Secretary.

Peter said that feedback from Scottish Government showed that the main things affecting the Fund reopening included:

• ILF Scotland has a good reputation and people are confident that it can do the work

• DPOs lobbying – this means DPOs trying to get a politician to support the campaign to reopen the Fund

• demand for ILF Scotland to reopen as part of the Shadow Geneva Report

David suggested that Group members might link with members of other organisations they know.

Finbarr talked about the research so far.

The evaluation from 4 years ago will be updated to include the cost-of-living crisis and the COVID-19 pandemic.

Finbarr has had 3 interviews with recipients and has 2 more planned in the coming weeks.

So far, people have had good experiences and have coped during the Covid pandemic.

Linda asked the Stakeholder Group to get in touch with Finbarr if they want to be interviewed for the research.

Finbarr explained that themes coming through the research so far include:

• how Covid affected people’s health

• keeping PAs

• being able to work flexibly using the furlough scheme

• the good impact that ILF Scotland has

Finbarr said the report will be finished by the end of October 2023.

Linda said that funding may be suspended for different reasons and sometimes can be permanently closed.

The proposed change in policy would mean that an award would stay suspended but could be re-started if applicants are still eligible.

The policy also means that ILF Scotland can pay awards after 28 days if recipients in hospital need support from their PA or support provider, up to 6 months.

After 6 months each case will be looked at individually.

Both sponsor teams have agreed the proposals in the revised draft.

The draft is now out for consultation with the Stakeholder and Advisory Groups.

David said the policy should be clearer about who contacts ILF Scotland to advise of hospital stays.

Linda asked members to email any comments to her.

Caroline talked about self-employed PAs and private providers charging a ‘private’ rate to Recipients of £18 per hour.

Linda will talk about this with Robert White.

Niqi asked how strict ILF were at applying the Threshold Sum.

Linda said the rules had relaxed in the Covid pandemic but that assessors are now making sure that Trusts follow the rules.

Caroline talked about Direct Payments and the cost of daycare.

Colin is waiting for information about this.

He will update the Group as soon as he can.

This will be on the agenda for the next meeting.

Caroline commented on the amount of time, effort, and money she spends on admin tasks about the PAs that care for Lee.

This affects the amount of time she can spend with Lee.

David introduced Jack Armstrong.

Jack is the policy and research officer for Danny Donnelly - MLA for East Antrim.

They are looking at proposals for a Private Members Bill for when there is a new Assembly in place.

They want the United Nations Convention on the Rights of Persons with Disabilities to be put into domestic law.

They are hoping that the new Minister will include this in the next Programme for Government.

David said:

• this must be about much more than just accessibility for disabled people

• it should also consider the right to independent living

David raised issues about:

• travel accessibility

• complex assistance

• additional funding needed for severely disabled people

Niqi said there is a great loss to society if disabled people are not included.

Caroline said that:

• the voices of disabled people and their loved ones are not being heard

• the Government does not recognise the contribution of unpaid carers and that social care would fold without this.

David reminded the Group that:

• Article 19 of the Convention must be used to push for ILF re-opening

• carers are getting older and are worried about the future care of their loved ones

Bryan asked how the bill was being promoted and if all political parties were supporting this submission.

Jack said this is part of an Alliance Manifesto and that:

• they are working on what it will say

• promotion will be important

They will use the group that Danny sits on and consultation to help with this.

Danny introduced himself and asked for feedback on what should be in his submission to the UN Convention on the Rights of Persons with Disabilities.

He gave the history of the Fund and noted that ILF reopening was not in the Manifesto.

David said that:

• Article 19 is very important to the ILF

• how important it is that our most severely disabled people can get out and about and be heard

Amanda spoke about how she relies on unpaid care because paid care just ‘gets her up’.

Caroline said:

• there are 3 hundred and 60 thousand unpaid carers in Northern Ireland and they need time to themselves

• ILF is empowering and gives disabled people and their families a quality of life

We must get the bill passed so that ILF is reopened and people get quick assessments.

David said this must happen in a way that protects disabled people’s rights.

Danny agreed that it is about being treated with dignity as equal citizens.

Niqi said it is about the right to be independent and have choice and control in your life.

We take that for granted but disabled people should have this too and it is so much cheaper to have people at home than in care.

Caroline said it is positive to have disabled people as part of the community.

Niqi said that all ILF funding is used to support disabled people.

Members are disappointed the joint event in October had to be rescheduled.

Linda said sorry and that:

• Harvey had sent out a letter explaining why the event was postponed

• she will set up a planning meeting soon

Liz said there are 2 assessors for Northern Ireland.

Sandra Sweeney will now be supporting in a management capacity.

Linda spoke about:

• all Trust areas are finding it difficult to get day care

• getting information for care schedules

• how difficult it is for recipients to keep PAs

Caroline said:

• PAs need £15 an hour

• it is difficult it is to get PAs trained and to keep them

• Trusts will not train one PA but employers cannot wait for group training

Mervyn shared a presentation about free learning for PAs.

He advised about access to the app and where to find more information.

Niqi asked:

• if there was a cost to register with the Northern Ireland Social Care Council

• if it would be possible to have a separate section for PAs

Mervyn said it costs £30 to register.

Mervyn said safe practice modules are being introduced next year for social care workers.

Mervyn said safe practice modules are being introduced next year for social care workers.

They must do these in the first 6 months of employment.

Some PAs may be family members.

Lee will share the presentation and video with the Stakeholder Group.

Linda said:

• Emma is off sick and the meetings would happen when she comes back, hopefully in October

We only need 1 or 2 meetings to:

• look at what work has happened

• decide the order that the work must be finished

Recipient feedback will be discussed at the meetings.

It was stopped because of Covid-19 and has not re-started.

There is a link between the Charter for Involvement and ILF Scotland’s Equalities statements, which need to be renewed in April 24.

David suggested that:

• Amanda can be a member and also represent The Omnibus Partnership

• we could invite Michael Lorimer to be an Affiliate Member

Michael is Chairperson of the Independent Monitoring Mechanism for Northern Ireland.

This is the organisation that checks how the United Nations Convention on the Rights of Persons with Disabilities will be followed here.

David suggested that the Stakeholder Group become a Disabled Person’s Organisation (DPO).

Everyone agreed to David’s suggestions.

Frances asked for all Group members to lobby other groups as well as their MLAs.

Peter wants to think more about the Group becoming a DPO.

David asked that the Terms of Reference be checked at the next meeting.

We must look at the quorum and those members not attending.

A quorum is the smallest number of people who must be at a meeting for it to take place.

Linda will draft a letter for David to tell members they will be removed from the group if they have not attended in the last year.

People will have a chance to respond.

Everyone agreed to this.

David asked members to think about changing the name to Advisory Group, like Scotland.

This will be on the agenda for the next meeting.

Bryan said his organisation is having an event at the Stormont Hotel on 7 November.

All Stakeholder Group members and ILF Scotland staff are welcome to attend.

Next meeting - Tuesday 5 December at the Mount Conference Centre where a Christmas lunch will be provided.

The meeting will also be on Zoom.