July 2024 Update 

Welcome to our July Member Update.

We have a reminder about our Member Survey (below):

DFI Member Survey

Our new Annual Membership Survey was issued last week.

The results of this survey will allow us to profile the membership of DFI at meetings, in lobbying and advocacy settings and online as well as in response to media queries. It will also help us to identify and hone other membership supports to meet your needs need.  Our target is to get a 100% completion rate on this survey, and we will be following up with you by email and by phone. The deadline for completion is 6 August. Any queries about the survey should come to us by email to dfisurvey@disability-federation.ie.

By way of other updates this month:

We invite you to an online consultation event on the National Disability Strategy with the Department of Children, Equality, Disability, Integration and Youth.

We share a blog from disability advocate Padraig Hannafin who attended #COSP17 at the UN in New York.

We highlight an open letter relating to the plight of disabled people in areas of conflict.

We share a thank you from our CEO Elaine Teague in relation to our recent AGM and Policy Seminar.

In Policy, we share the Pre-Budget Submission of the Oireachtas Disability Group.

In Health we have an update on the Neuro-Mapping Project and on the development of the National Rare Disease Strategy for Ireland. 

In Self-Advocacy, we share a brief update about our Self-Advocacy toolkit.

We also profile some Member news and campaigns 

The DFI Podcast has a new episode coming later this month which will focus on rare disease and specifically neurofibromatosis.

Finally, we took five minutes with our Community Development Manager PJ Cleere for a chat about upcoming projects.

If you have been forwarded this newsletter please consider subscribing to get your own copy sent to you by email – Click here.

Disabled People in areas of conflict  

This was one of our key priority issue in our recent European Election Manifesto.  Our colleagues in the European Disability Forum continue to make representation for disabled people in Gaza. Drawing the attention of European leaders to how the conflict is creating a critical situation for persons with disabilities- they are often the first to lose their lives or be left behind.

An open letter to the international disability rights community on Gaza has been circulated. We are circulating this for your information at the link below:

Open letter to the international disability rights community on Gaza (breakingthesilenceongaza.org

• Galway Centre for Independent Living marks 30th anniversary 
• NAI’s Pre-Budget Submission calls for funding to address regional inequity
• KARE releases annual report highlighting progress and achievements for 2023
• Save the date for MS Ireland’s National Conference
• IWA reacts to transport issues across the Capital 

Please do send us your stories and campaigns so as we can feature them on our dedicated Member Newsfeed on our website and here in our newsletter. Email us.

Brenda: Can you tell us a little bit about yourself? 

PJ: I’m married with two adult children and two grandchildren. I have worked in the youth and community sector as a volunteer and professional for over 40 years, and have been with DFI for 20 of those. I have lived experience of disability, and within my family. My main interests outside of work are having time with my family, gardening, DIY and reading history.  In particular I have a love for military and social history.

Brenda: Can you explain what your role involves in DFI and some of the work that you do? 

PJ: I lead the Community Development Programme in DFI. The aim of this work is to support and promote understanding of the broader community among our members, and their role in that community.  We also work to provide the tools and resources to support members to construct and sustain self-advocacy within their organisations and develop strong internal partnerships with service users. Through a parallel process, we support self-advocates and member orgs to engage with their own communities and participate in local decision making.

Brenda: What are your particular areas of focus? 

PJ: Working with a team of four colleagues, we are engaged in projects with local government, linking community and HSE reforms, the Self-Advocacy Programme in partnership with our members, front line staff and self- advocates, and the provision of training.

Brenda: What are you looking forward to (workwise) in the coming months? 

PJ: The next few months are exciting. We are looking forward to completing a co-designed Members Self-Advocacy Toolkit which will be used to develop and sustain self-advocacy in member organisations. We are also working on the provision of e-learning for members, which is a major new development for DFI. As part of the e-learning project we have just completed a really interesting video series with disabled people called Understanding Disability which will be used as part of our e-learning.

Brenda: What’s your favourite quote or motto? 

PJ: It’s hard to pick one or two quotes which I try to live and work by. But there is one that has always struck me as applicable to many situations I have encountered in life.

As a child of the 1960’s I grew up surrounded by a world of active civil and armed strife, and the constant threat of nuclear war. But even then, I saw the difference between the macro issues and the very real issues happening on the ground around me. Inequality and the struggle for basic human rights have influenced me all my life. A key learning for me then was the difference between equality and equity, which has been the main focus of my life’s work.  You might ask, is equality not enough? What’s the difference?

The following quote really speaks to me and is applicable to many things in life, especially when it comes to disability.

“Equality is giving everyone the same pair of shoes. Equity is giving everyone a pair of shoes that fits.” — Author unknown. 

Equity is a recognition that different people and different circumstances call for the addition of different tools and resources so they can avail of being equal. That sense of being ‘ just like everyone else’. Our world and our politicians strive for equality, with little consideration for equity. Equity in disability terms comes in the shape of those home care services, Pas, accessible public transport, accessible technology, accessible work opportunities and training, etc. in fact all those supports that continue to be underfunded and disregarded as though they are luxuries which people can really do without. These are in fact the tools required for equity to be real, and which would give true meaning to the promise of real inclusion and equality.

ends

Thanks for chatting to us PJ! If you would like to get in touch with PJ, you can email him here. 

Click here for the Eventbrite registration. 

The AGM offered us the opportunity to acknowledge former CEO John Dolan. We also shared an update on our Strategic Plan progress and launched our Annual Report for 2023.

Our policy seminar looked at the evolving disability landscape in Ireland. John Dolan delivered a paper which was then responded to by an expert panel moderated by Miriam O’Callaghan. The panel discussion featured Adrian Carroll from As I Am; Councillor Miriam Murphy; Colm Ó’ Conaill from DCEDIY; Catherine Naughton from the European Disability Forum; and Senator Lynn Ruane.

We were delighted to have Minister Anne Rabbitte with us to deliver the opening address to our seminar.

Our Annual Report is available here.

Photos from the AGM and Policy Seminar are available here.

We will have John’s paper available on our website shortly. For now, thanks again.

Elaine Teague, CEO.

Emer and Padraig, along with his PA Anna, attended the Conference of State Parties to the Convention on the Rights of Persons with Disabilities or #COSP17, which is took place from 11 to 13 June at the United Nations in New York.

#COSP17 was a week of policy, global strategy and knowledge exchange which we are grateful to be part of.

Padraig delivered an address to the Civic Society Focum at #COSP17 on Monday 10 June on the theme of the rights to decent work for persons with disabilities. Padraig wrote a blog for us about his experience at COSP which you can read here.

Registration will open over the coming weeks so keep an eye on the NDA website for up-to-date information.

We have developed a Live Consultations landing page on our website where we aim to include opportunities along with the relevant closing dates.

Please email us if you are aware of consultations that you think disabled people and organisations should be aware of.

Actioning Self-Advocacy

We are also working on the provision of a new e-learning programme for members, which is a major new development for DFI. As part of the e-learning project we have just completed a really interesting video series with disabled people called Understanding Disability which will be used as part of our e-learning. We look forward to sharing these soon.

Any queries about the DFI Self-Advocacy Programme should come to PJ Cleere.

Policy & Research

We met with representatives from government and opposition parties and independents and discussed some of the key issues facing disabled people that need to be addressed in Budget 2025. Our asks include:

• Taking action on disability poverty, exclusion and cost of disability.

• Improving supports and housing so disabled people can live independent lives.

• Supporting Disabled Persons’ Organisations (DPOs) and organisations providing disability services, advocacy and advice.

• A transparent and clear budgetary process and a disability-proofed budget.

Read more here.

This campaign is part of the National Housing Strategy for Disabled People 2022-2027.

A new website is also under development that will bring together useful information and resources for disabled people on housing and supports they need to facilitate independent living. The website is due to launch this month.

Find out more on the ‘Journey to Independent Living’ campaign webpage.

They are now calling for submissions on the topic of independence and accessibility in housing for disabled people. The award will be presented at the Simon Brooke Lecture, at which the winner will have the opportunity to present on their entry.

The award is open to individuals and organisations that have led projects and initiatives which have contributed or are significantly contributing to enhancing accessibility and independence in housing for people with disabilities. Entries should refer to work with elements commenced in 2023/2024. This can include new aspects introduced as part of existing work.

Submission Deadline: 5.00pm on Monday, 15 July 2024.

Click here to download the Simon Brooke Award 2024 application form.

Please email your completed application form and/or any questions/clarifications to Andrew Daly, Policy and Research Coordinator, at Adaly@Clúid.ie.

Key points in the report include:

• Parents who have a disability or child(ren) with disability are at high risk (more at risk than others) of experiencing inadequate housing provision and health and wellbeing impacts from unsuitable housing, housing insecurity and housing status.
• Those in social housing can encounter unsuitable, non-child friendly, damp housing with poorer quality neighbourhoods, social disorder and low neighbourhood social capital.
• Targeted supports need to tackle fuel and food poverty.
• Integrated service provision with wrap-around-supports are required including Family Support Services, community enhancement and participation, early intervention and prevention supports e.g. Home School Liaison Officer (not available in all schools).
• Lone parents should be provided with second tier targeted child benefit payments to lift children and families out of poverty. Many families in private rented accommodation are faced with unaffordable Housing Assistance Payment (HAP) top-ups.
• Mixed tenure housing and replicating building communities within the AHB sector is recommended.

You can read the report here.

An advisory group has now been established by CEUD, NDA and the Department of Children, Equality, Disability, Integration and Youth (DCEDIY) to provide strategic advise on implementation of the guidelines and improvement in capital infrastructure for early learning and care settings.

The advisory group are interested in linking with any DFI members who could contribute to the project. Let us know if you are interested and we can put you in touch with them. Email Ríona.

Health Updates 

Key themes from service users include lack of dedicated specialist services, difficulty in navigating and accessing services and absence of long-term continuity of care.  The primary themes from service providers include services being understaffed and under resourced, lack of specialist services, lack of knowledge of services and inequitable access to services.

These initial findings have been shared with members of the HSE Community Workstream of the Neuro-Rehabilitation Strategy and will be explored in more detail in the final report, which is due for publication later this year.

Please contect Nicola O’Malley Research Officer with any queries or click on the Neuro-Mapping Project web page.

Link to the public consultation.

The Department of Health is managing the Public Consultation. Information on the process, including how to contribute to the consultation via email or post, is available here.

Queries on the consultation process should be addressed to the Department of Health by email here.

 An Eye on Europe

This is one of the oldest and most prestigious EU awards, and it is the only one that recognises cities that have done outstanding work to become more accessible for persons with disabilities.

This year is particularly important as it marks the 15th anniversary of the award. Over the past 14 years, 70 cities have been awarded, including 14 1st prize winners among them. The most recent city to receive the prestigious award was San Cristóbal de La Laguna (Spain).

The award is organised by the European Commission in partnership with the European Disability Forum. The winner and runners-up will receive a monetary prize:

• First place: EUR 150,000
• Second place: EUR 120, 000
• Third place: EUR 80,000

In addition, the EU Jury may decide to award up to five “Special Mentions” if there are cities that have done exceptional work in a particular key area of accessibility (e.g., built environment and public space; transport, and related infrastructure; information and communication, including ICT; or public facilities and services).

This year, the European Commission also intends to award an ‘Accessible Sports Infrastructure’ Special Mention to a city that demonstrates how they feature accessibility in their sports infrastructure.

The winners will be announced at the award ceremony during the European Day of Persons with Disabilities conference taking place on 29 November 2024.

The closing date for applications is 10 September 2024. Click here for more. 

 The DFI Podcast

This episode will be available on Monday 16 July.

Our podcast is sponsored by TTM Healthcare. 

You can find all previous episodes of The DFI Podcast on Spotify and on our website, where you can also subscribe to future episodes.