Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697750968910.pdf (Ireland)
Sarah Cremin From: Sent: To: Cc: Subject: Attachments: National Platform of Self Advocates <myvoiceireland@gmail.com> Friday 10 July 2020 09:01 Aileen Fallon Covid19; Niamh NÍ Shúilleabháin; Ronan Fox Re: Request for written submission Impact of Covid-19 - The National Platform of Self Advocates.pdf; Information on The National Platform of Self Advocates 2020.pdf Categories: Submissions Correspondence item number SCC19R‐R‐0499 Thank you for inviting the National Platform of Self Advocates to submit information to the special committee on Covid-19 response.
Thank you for acknowledging the voices of people with intellectual disabilities.

Please find attached our response and an additional document with information on our organisation.

We apologise for the delay in our response.

We are currently without funding so we do not have paid facilitation.

This means that we are relying on volunteers to get some work done.

We cannot do all the work we are asked to do but we felt that a submission to your committee was very important.
Best regards, Chairperson of the National Platform of Self Advocates Brian Hayes On Wed, 24 Jun 2020 at 08:49, Aileen Fallon <Aileen.Fallon@oireachtas.ie> wrote: Dear Mr. Hayes, That will be fine – could you confirm the date you can make the submission so we can make sure it’s included?

Regards, 1 SCC19R-R-0499(i) D Aileen.


Aileen Fallon Committee Clerk (Work Programme) Special Committee on Covid‐19 Response Houses of the Oireachtas Service Kildare House Dublin 2 Tel: (01) 618 3843 Mob: 086 777 7451 E: aileen.fallon@oireachtas.ie From: Covid19 <Covid19@oireachtas.ie> Sent: Tuesday 23 June 2020 18:02 To: Aileen Fallon <Aileen.Fallon@oireachtas.ie> Subject: FW: Request for written submission I’ll leave this in the inbox (under the Requests for Submissions category) for you to respond.
É From: National Platform of Self Advocates <myvoiceireland@gmail.com> Sent: Tuesday 23 June 2020 16:48 To: Covid19 <Covid19@oireachtas.ie> Subject: Re: Request for written submission Hi Aileen, Thank you for that.

2 SCC19R-R-0499(i) D We have found some support to hold an online meeting next Monday.

I am hoping that we will be able to get help to put a report together for you.

We would need 2 extra weeks to do this.

Thank you for your understanding.


Best regards, Chairperson of the National Platform of Self Advocates Brian Hayes On Thu, 18 Jun 2020 at 17:13, Covid19 <Covid19@oireachtas.ie> wrote: Dear Mr. Hayes, Thank you for your email.

If it would be of any assistance in enabling your group to submit a response, I would be happy to extend the deadline in the circumstances.

Regards, Aileen.
Regards, Aileen.

From: National Platform of Self Advocates <myvoiceireland@gmail.com> Sent: Thursday 18 June 2020 15:40 To: Covid19 <Covid19@oireachtas.ie> Subject: Re: Request for written submission Dear Aileen, 3 SCC19R-R-0499(i) D We regret that the National Platform of Self Advocates cannot respond to this invitation.

Ours is a member organisation.

People with intellectual disabilities require more time to provide written responses as we need to consult with our members.
Our members are currently isolated due to the pandemic.

Many of our supports have been withdrawn.

This makes engagement with the special committee on Covid-19 inaccessible with such a short response time.

Additionally we have no funding and no access to our facilitator.

The government does not fund independent DPOs.

It is regrettable that the independent voices of people with intellectual disabilities have been denied.

We wish you luck with your work.


Best regards, Chairperson of the National Platform of Self Advocates Brian Hayes On Tue, 16 Jun 2020 at 12:22, Covid19 <Covid19@oireachtas.ie> wrote: Dear Mr. Hayes, Please find attached urgent correspondence from the Special Committee on Covid‐19 Response for your attention.

If you have any queries, please do not hesitate to contact me at aileen.fallon@oireachtas.ie 4 SCC19R-R-0499(i) D I would be grateful if you would acknowledge receipt of this email.

Regards, Aileen.
Regards, Aileen.

Aileen Fallon Committee Clerk (Work Programme) Special Committee on Covid‐19 Response Houses of the Oireachtas Service Kildare House Dublin 2 Tel: (01) 618 3843 Mob: 086 777 7451 E: aileen.fallon@oireachtas.ie Oireachtas email policy and disclaimer.

http://www.oireachtas.ie/parliament/about/oireachtasemailpolicyanddisclaimer/ Beartas ríomhphoist an Oireachtais agus séanadh.
http://www.oireachtas.ie/parliament/ga/eolas/beartasriomhphoistanoireachtaisagusseanadh/ Oireachtas email policy and disclaimer.

http://www.oireachtas.ie/parliament/about/oireachtasemailpolicyanddisclaimer/ 5 SCC19R-R-0499(i) D Beartas ríomhphoist an Oireachtais agus séanadh.

http://www.oireachtas.ie/parliament/ga/eolas/beartasriomhphoistanoireachtaisagusseanadh/ Oireachtas email policy and disclaimer.
http://www.oireachtas.ie/parliament/about/oireachtasemailpolicyanddisclaimer/ Beartas ríomhphoist an Oireachtais agus séanadh.

http://www.oireachtas.ie/parliament/ga/eolas/beartasriomhphoistanoireachtaisagusseanadh/ 6 SCC19R-R-0499(i) D The National Platform of Self Advocates is an independent advocacy organisation run by people with intellectual disabilities.

We represent the voices of people with intellectual disabilities in Ireland.
The National Platform of Self Advocates Submission on the impact of Covid- 19 on people with disabilities and the disability sector.
1 SCC19R-R-0499(ii) D Contents Impact of Covid-19 on people with disabilities and the disability sector ........................................ 3 Submission from the National Platform of Self-Advocates .............................................................. 3 Covid-19 response for people with a disability ................................................................................. 3 Covid-19 Infections and clusters in disability settings/services ...................................................... 3 Availability of data disaggregated by disability for Covid-19 .......................................................... 3 PPE - Supplies and supports for disability sector and carers .......................................................... 3 Accessibility of public health information on Covid-19 for persons living with disabilities ........... 3 Impact of Covid-19 on daily life and services .................................................................................... 4 Impact on educational supports for people with disability ............................................................ 4 Services for people with disability post Covid-19 ........................................................................... 4 Accessibility – public transport particularly and of public sanitation facilities ............................... 4 Impact on those in employment and employment opportunities ................................................. 4 Dealing with paternalism and ignorance ........................................................................................ 4 Impact of Covid-19 on carers and families of those with disability ................................................. 5 Impact on those caring for persons with disabilities in an informal capacity (e.g.
families taking over from carers) ............................................................................................................................ 5 Impact on Disability Sector ................................................................................................................ 5 2 SCC19R-R-0499(ii) D Impact of Covid-19 on people with disabilities and the disability sector Submission from the National Platform of Self-Advocates We have been totally isolated as a result of Covid-19.
We feel that we have been neglected by the state response.

Nobody has tried to build our communications capacity so that we can maintain relationships with peers and family.

Our mental health is suffering.

It has become evident that people with intellectual disabilities need to have access to upskilling around technology use and communication as a matter of urgency.

In some cases, our well-being and our lives may depend on it as we are denied information from other sources.
The National Platform itself has been silenced due to lack of funding for Disabled Persons Organisations.

This could not have happened at a worse time when so many of our members around the country are left without supports and devoid of communication or independent advocacy.
The pandemic has highlighted the necessity that the rights of people with intellectual disabilities are upheld and that we are given equal access to information as guaranteed under the Convention on the Rights of Persons with Disabilities.

Covid-19 response for people with a disability Covid-19 Infections and clusters in disability settings/services Disabled people have been unable to find out if our own services have been affected by COVID-19 or what level of risk we are being exposed to.
Availability of data disaggregated by disability for Covid-19 We have not seen any data.

We are very concerned that deaths in nursing homes and residential centres have not been treated in the same way as in the reporting of deaths in hospital settings.

PPE - Supplies and supports for disability sector and carers Gloves and masks are expensive.

Disabled people are being asked to provide their own PPE for visiting staff.

Apart from the difficulty in securing PPE, supplies are expensive.
This is an undue burden on disabled people.

Accessibility of public health information on Covid-19 for persons living with disabilities We recognise that some efforts were made to produce leaflets and information in easy to read formats, but isolation and gatekeeping mean that these sources of information have not often reached us.

We are completely dependent on family since staff have been withdrawn.

For some of us, family members are not a source of support.
3 SCC19R-R-0499(ii) D Impact of Covid-19 on daily life and services Impact on educational supports for people with disability Some third-level courses designed specifically for people with intellectual disabilities cannot be delivered because of social-distancing and the lack of access to equipment and connectivity that is common for people with intellectual disabilities.
Most of the country seems to be able to continue its activities using video calls, but this is not an option for us due to inaccessibility, cost, and lack of support.

In some instances, colleges have not communicated with us to tell us if the courses we were attending in the last academic year will be completed.

In a lot of cases our courses are more beneficial if they are delivered on campus as we benefit greatly from integration with other students and using college facilities.
We do not have access to the same technology and supports as other people to learn online.

Services for people with disability post Covid-19 We still have no idea how life will be post-COVID-19.

We are already isolated.

Many of us who live in residential facilities are not allowed access to online services or do not have our own devices and connections.

We are dependent on service staff to tell us what is happening, meaning that we only get a filtered version of news and information.
Many of us do not have access to our service staff now, so even this source is gone.

The failure of the government to fund our only independent self-advocacy representatives, the National Platform of Self- Advocates, means that our only source of independent support and information has also been denied to us.

Accessibility – public transport particularly and of public sanitation facilities Services are advising people not to use public travel.
For many of us, public transport is the only independent travel that we have access to.

There is a lack of accessible information around transport for people with learning disabilities, regarding availability and how to travel safely.

Impact on those in employment and employment opportunities Disabled people are in fear that they will not get their part time jobs back.

Employers are afraid that they may have to implement additional measures simply because we have an intellectual disability.
Dealing with paternalism and ignorance There is a general lack of understanding of the capability of people with learning disabilities to attend to their own personal care and to comply with measures to combat COVID-19.

We are regularly treated with suspicion and infantilised, with members of the public questioning our hygiene.

4 SCC19R-R-0499(ii) D Impact of Covid-19 on carers and families of those with disability Impact on those caring for persons with disabilities in an informal capacity (e.g.
families taking over from carers) Consideration has to be given to people with disabilities who are carers or who have had to become carers since the start of the pandemic.

Some people with disabilities have been left at home with their elderly parents.

Some have had to become carers without any training or support, social or financial.

Service organisations have been very slow to release any information for their reopening plans or to make new support plans for the people using their services.
Impact on Disability Sector All we know about the impact in this area is how we have been removed from our usual services and the communication we are receiving from our services is very limited.

5 SCC19R-R-0499(ii) D The National Platform of Self Advocates is an independent advocacy organisation run by people with intellectual disabilities.

We represent the voices of people with intellectual disabilities in Ireland.
The National Platform of Self Advocates THE NATIONAL PLATFORM OF SELF ADVOCATES 1 SCC19R-R-0499(iii) D Contents The National Platform of Self Advocates ................................................. 3 The Platform as an organisation ................................................................ 3 The National Platform of Self Advocates - Strategic Plan 2019 to 2024 .. 5 Our Vision .............................................................................................. 5 Our Mission ............................................................................................ 5 Our Goals ............................................................................................... 5 Goal 1: Make the Platform better known .................................................. 5 Goal 2: Empower people like us to become self advocates ......................... 6 Goal 3: Make the lives of people with disabilities better ............................. 7 Goal 4: Expand the National Platform nationwide ..................................... 7 Goal 5: Promote the rights of people with disabilities ................................ 8 2 SCC19R-R-0499(iii) D The National Platform of Self Advocates The National Platform of Self Advocates is an independent organisation run by people with intellectual disabilities for people with intellectual disabilities.
It is a membership organisation with an elected steering committee working on its strategic plan.

The group is founded on the right of people with intellectual disabilities to be included as equal citizens with rights as outlines in the UN Convention on the Rights of Persons with Disabilities.

The Platform aims to be the nationally recognised spokes organisation on policy and issues affecting the lives of people with intellectual disabilities.
It aims to be involved through representation by its members in local and national policy making groups.

Steering committee members have been involved in several working groups run by the HSE and other organisations involved in improving the quality of life for people with disabilities.
The Platform has representation on the following: • Consultative and Strategy groups of the Taskforce on Personalised Budgets • Make Work Pay Consultation Groups • A member of the National Platform is on the Board of Directors of Inclusion Ireland.

• Membership of the Value for Money (Transforming Lives) committee.

• Direct consultation with the Department of Employment Affairs and Social Protection on the content of consultation processes.
• A member of the Platform is on the Disability Advisory Committee appointed by IHREC • Advised Minister Finian McGrath on issues affecting the lives of people with intellectual disabilities.

The Platform has built strong relationships with national bodies and international rights groups.

The Platform is regularly asked to present at conferences and to take part in research projects where the voice of people with intellectual disabilities is valued.
The organisation aims to be an integral part of departmental consultations on disability issues, supporting the work of the Minister for Disability.

The Platform as an organisation The National Platform is an unincorporated association of individuals from across Ireland with intellectual disabilities.

It is legally advised on a pro bono basis by Arthur Cox solicitors.

3 SCC19R-R-0499(iii) D The Platform completed an independent evaluation of its work in 2017 and have audited accounts to date by BCK.
It is run by a committee of 12 people elected by its members to work on their behalf.

Its current officers are: • Brian Hayes, Chairperson • Christina Burke, Secretary • David Fraughen, Treasurer • Dermot Lowndes and Mairead Forde, Joint Pro Officers.

The Platform’s main governing documents are its vision statement and its 5-year strategic plan.

The current strategic plan was developed with input from its members and recommendations from its 2017 independent evaluation.
The committee meets on a monthly basis as a decision making group.

Work is completed between committee meetings by subgroups focused on particular tasks/actions dictated by the strategic plan.

Under the new strategic plan, work will be delegated to the regions to facilitate the inclusion of more active members.
The Platform was set up in 2011 supported on a voluntary basis at that time by an interagency support team comprising the Centre for Disability Law and Policy (NUI Galway), Inclusion Ireland and Séasamh (Self advocacy groups based in the South East).

The Platform was initially funded by a Genio grant.

In 2015 Atlantic Philanthropies approved a 3-year grant to the organisation which expired at the end of July 2018.
The work of the Platform is currently focused on sourcing core funding to ensure that the organisation can continue to exist.

Minister Finian McGrath has prevented the Platform from winding down by providing financial support in exchange for consultation work.

The National Platform of Self Advocates have innovative ways of working that serve the needs of self advocates.
Experiences of applying for funding to the various government departments and funding bodies have shown that this is not currently recognised by the wider system as a valid way of operation.

Currently too much of the Platform’s work is spent chasing funds.

In June 2019 the steering committee have decided to look at the structure of the organisation again to ensure that it can be supported by government in its work.

It needs to be core funded.


4 SCC19R-R-0499(iii) D The National Platform of Self Advocates - Strategic Plan 2019 to 2024 The National Platform of Self Advocates is an independent organisation run by people with intellectual disabilities for people with intellectual disabilities.

It is a membership organisation with an elected steering committee working on its strategic plan.
Our Vision Our vision is of a fully inclusive society where everybody has equal rights, equal opportunities, and the right support to reach their full potential as individuals.

Our Mission Our mission is to promote the rights of people with intellectual disabilities and to make sure that their voices are heard and respected.

Our Goals The National Platform has 5 goals.

Goal 1: Make the Platform better known Objective 1: Use the Internet and Social Media to promote the Platform.
• Publish a newsletter • Use blogs and vlogs • Write articles for the press • Keep our website updated with information relevant to people with disabilities • Contribute content to other websites and magazines • Demonstrate how people with disabilities can join in everyday activities with support.

Objective 2: Get the National Platform well known in the media.
• Do press releases on current issues • Network with journalists to do newspaper, radio and TV interviews • Get to know local radio presenters • Get ‘Disability Voices’ slots on local radio and newspapers.

5 SCC19R-R-0499(iii) D Objective 3: Promote the Platform.
• Tell people with intellectual disabilities about the Platform • Meet service providers • Present information to local and national government • Have easy to read advocacy guides on our website • Build partnerships with other organisations and advocacy groups.

• Be a leader in self advocacy • Explore creating an ‘Advocacy Quality Mark’ that people and organisations can sign up to • Run national and regional conferences • Be involved in national and regional conferences run by others on relevant issues.
Goal 2: Empower people like us to become self advocates Objective 1: Empower people through training.
• Build the capacity of the Platform steering committee to understand policy that affects our lives • Run events to build the confidence of Platform members to speak about their lived experience of issues that face them • Provide information in easy to read formats for regular members to understand issues • Train members to be good facilitators and self-advocates • Build expertise in leadership, advocacy and human rights so that the Platform can take a role in peer training • Be involved in training staff of organisations to ensure they learn to listen to our voices and respect what we have to say.
Objective 2: Find ways to improve communication for everybody.

• Get media skills training for the Platform steering committee and area representatives • Explore ways to use technology to promote self advocacy • Use technology to make it easier for people to keep in touch with each other.
• Develop leadership skills through training and mentoring • Build a section on the website for people to share ‘our lived experience’ of work, unemployment, education and life in general so we can learn from each other • Make regional groups strong enough to respond to local events.

6 SCC19R-R-0499(iii) D Goal 3: Make the lives of people with disabilities better Objective 1: Research ‘Our Lived Experience’ of issues that affect the lives of people with disabilities.
• Listen to our members and decide what issues to research • Publish research • Present research results to government and service providers • Be involved in setting the national research agenda.

Objective 2: Be the voice of people with intellectual disabilities to influence change in law and policy.
• Build capacity within the Platform to take a role in the roll out of Personalised Budgets • Lobby government and work with local authorities and present research • Take a role in monitoring the UNCRPD • Be involved in the Disability Strategy Implementation • We want to be involved in monitoring the UNCRPD in Ireland.
This is what happens with intellectual disability groups in other countries • Make the Platform an organisation the government will invest in • Be involved in policy making • Campaign on issues that are relevant to people with intellectual disabilities.

Objective 3: Explore how technology can improve the lives of people with disabilities.
• See how technology can help people with intellectual disabilities to communicate in different ways • Look at ways that technology can support our independence • See how technology can make us better self-advocates • Get to know researchers and organisations that are already learning about technology.

Goal 4: Expand the National Platform nationwide Objective 1: Set up a regional structure for the Platform in all areas of the country.
• Set up a local and regional structure for the Platform so that members are actively involved • Appoint Platform representatives in all regions • Create a feedback system from local groups to the national steering committee • Facilitate local advocacy meetings.

7 SCC19R-R-0499(iii) D Objective 2: Support local advocacy groups.
• Provide peer support for local groups • Facilitate independent advocacy meetings • Build the capacity of local groups to be able to have a voice on local issues • Run local events and be involved in events run by other relevant groups Objective 3: Get more people to become members of the Platform.

• Promote the benefits of membership • Create new member benefits • Show that people with disabilities can work together to make change.
Goal 5: Promote the rights of people with disabilities • Promote the rights of people with disabilities in everything the Platform does • Use human rights language when speaking and writing • Use opportunities to educate the press and the public to use human rights language when talking about people with disabilities and their lives.

8 SCC19R-R-0499(iii) D