How personal budgets are working in Ireland – A Research Brief


Title

How personal budgets are working in Ireland: Evaluating the implementation of four individualised funding initiatives for people with a disability in Ireland.

Research team
Prepared by Pádraic Fleming, Mental Health and Social Research Unit, Maynooth University Department of Psychology.

Download report here.

This report presents an evaluation of the implementation of personalised budgets in four Genio-supported projects for people with a disability. The evaluation includes a summary of the main lessons learned according to the key people involved in these initiatives, including individuals with a disability who participated in the initiatives; family members; paid and unpaid advocates; and staff members from within the four organisations.

This document is aimed at anyone who is interested in the practicalities, successes and challenges of implementing individualised funding initiatives in Ireland. Those who may be interested include:

    • People living with a disability.
    • Those providing informal supports for people with a disability, such as family members, friends, members of the wider community.
    • Personal assistants / key workers and other paid support for individuals with a disability.
    • Staff members currently implementing individualised funding initiatives.
    • Service providers considering moving to an individualised funding model or incorporating an individualised funding arm into their current service model.
    • Researchers.
    • Funders.
    • Policy makers/drivers such as civil servants and elected members of government.
    • The Health Service Executive (HSE) and other health service staff.

For individualised funding to be successful in Ireland, it is important to focus on an individual’s abilities, passions and interests and to encourage independence and personal responsibility. It is essential to provide an easy and transparent access route from the outset for people who wish to avail of individualised funding and targeted training for support workers / personal assistants etc.

New community-based friendships should also be encouraged and facilitated, while existing contacts and friendships are maintained for the people supported. Sharing stories and celebrate achievements by using social networks, blogs, print, video and other media can highlight success stories and help grow momentum.

Ensure that senior staff members within organisations implementing individualised funding positively champion and promote individualised funding, particularly during challenging periods and develop collaboration and build a unified network of advocates in order to strengthen the national presence. It is important that these people engage and network in order to share ideas, top tips and pitfalls whilst focusing on shared goals rather than organisational differences.

A number of recommendations are made at the end of the briefing document. These are based on the key lessons presented and are intended to inform, challenge and promote discussion among the readership.

Key Points

    • For personal budgets to work effectively, the focus should be on each person’s abilities and interests, along with encouraging independence and personal responsibility.
    • The process of implementing personal budgets must be clear and easy to access.
    • Training for all parties is essential in order to access and utilise personal budgets effectively.
    • Sharing stories and celebrating achievements via social networks, video and other media can highlight success and grow momentum.

HSE National Office for Human Rights and Equality Policy Newsletter

HSE National Office for Human Rights and Equality Policy Newsletter (Issue 2, Winter 2020)

Read it here: National Office for Human Rights and Equality Newsletter

WELCOME!
It has been a busy couple of months since our last newsletter. We completed our autumn / winter webinar series on Assisted Decision Making, Consent and tools for Practice. Over 3,000 people from across health and social care services, advocacy, other public services and from the legal profession attended the four webinars. The webinars were really well received and we are developing an FAQ resource to address the hundreds of questions which were submitted over the four sessions. We are currently putting the finishing touches to our spring / summer series in 2021—more information will be circulated on this early in 2021. If you missed any of the webinars in this series, you can watch them on

Work has commenced on the development of an e-learning programme on supporting decision-making, advance care planning and undertaking the functional assessment of capacity. Details will be circulated as it becomes available. We also sought your views on consent through a staff survey. Over 2,000 people took the time to complete this which will provide us with invaluable information to support the implementation of the revised National Consent Policy which will be launched with the National Consent E-Learning Programme in early 2021. Sincere thanks to all of you who completed the survey. The results will be released early next year.

We are delighted with the announcement that Professor Gerard Quinn, former Director of the Centre for Law and Disability Policy at NUI Galway has been appointed as UN Special Rapporteur on the Rights of People with Disabilities. This comes at a critical time as the clock ticks slowly towards the commencement of the Assisted Decision Making (Capacity) Act 2015 (the 2015 Act). It is now 5 years since the 2015 Act was passed. In those intervening five years there are many people who fought and lobbied for the 2015 Act who have since passed away and did not benefit from the fruits of their labour. Professor Quinn was central to keeping the 2015 Act on the policy agenda over many years buoyed by the strength and vision of these people. In spite of delays in commencement, there is increasing evidence of the spirit of the UN Convention on the Rights of People with Disabilities (UNCRPD) and the 2015 Act filtering into the daily practice of Health Care Workers across a diversity of services. Through our work we strive to ensure that we are constantly building the capacity of staff to work with the spirit of national and international human rights law. The message is simple- keep the person at the centre. Always. Nothing about me without me. We look forward to 2021 being the year where real commitment to full commencement of the 2015 Act will be realised. Thank you all for your continued support and for your commitment to the people who use your services.

I hope you all have a peaceful Christmas and wishing you all the best for 2021.

Caoimhe Gleeson,
Programme Manager

Launch of Expressions of Interest to join Ireland’s Disability Participation and Consultation Network

Press Release from Department of Children, Equality, Disability, Integration and Youth 

(Published on

An easy to read version of this press release is available here.

Watch Minister Rabbitte’s launch video here.

Ireland has signed up to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

Ireland now has to make sure that it consults with and involves people with disabilities when making policy and law that has an effect on them.

To make sure that this happens, the Government has decided to set up a new group, called the Disability Participation and Consultation Network.

The Network will make sure that people with disabilities will be heard directly when the Government makes important decisions.

The Disability Participation and Consultation Network will make sure people with a disability will be involved in the development of policy and legislation.

  • Following a process to find organisations to receive funding to help run the Network, this call is now being run to find interested people with disabilities, Disabled Persons Organisations (DPOs) and disability organisations to become Members of the Network.Members will take part in the running of the Network and be central to its work of gathering and representing the views of people with disabilities and making sure that those views are heard in the development of policy and legislation.
    • Consultation on Ireland’s Initial State Report to the UN Committee on the Rights of Persons with Disabilities is an immediate task for the Network.
    • The Minister of State with responsibility for Disability, Ms Anne Rabbitte T.D. today invited interested parties to apply to become members of Ireland’s Disability Participation and Consultation Network.

Having selected organisations to be funded to help run the Network, individual people with disabilities, DPOs and representative organisations are now being invited to become members of the Network.

Members will be an important part of the Network and its job of ensuring that people with disabilities are involved in the development of policy and law, in line with the requirements of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

People with disabilities and organisations from all backgrounds and experiences are invited to apply to become a Member. Although Membership places are limited there will still be chances to get involved with the Network when it begins its work.

Further details of the Network, the role of Members and details of how to apply are available on the Department of Children, Equality, Disability, Integration and Youth website here.

The deadline for receipt of applications is 11am on Friday, 27 November 2020.

Announcing this invitation for expressions of interest, Minister Rabbitte said:

“Members of the Participation and Consultation Network will be central to the work of ensuring that people with a disability will be heard directly and be engaged with meaningfully when legislation and policy is being formulated.

“Since taking office, it’s been my imperative to hear firsthand the experiences of people with disabilities and how their lives have been impacted. Such engagements are crucial, and this lived experience can shape policy and legislation in a real way, ensuring a more inclusive and integrated approach to how we develop policies into the future.

“I would invite individuals with disabilities, Disabled Person’s Organisations and disability organisations representing the wide range of disability experiences in Ireland to apply. Training and support will be provided by the Network and, in particular, I hope that people who may normally be distanced from, or who have not felt the opportunity to be involved in similar activities, will look to become involved.”

The Joint Committee on Disability Matters invites submissions to hear about their lived experience

The Joint Committee on Disability Matters invites written submissions from interested groups or individuals to hear about the lived experience of people with disabilities on the issues that affect them and their families and/or carers. These submissions will assist the Committee in what they need to focus on in their role as a Committee and their future work.

Background

The Committee was set up to consider all disability matters including monitoring the implementation (by Ireland) of the United Nations Convention on the Rights of People with Disabilities (UNCRPD), but the Committee is also tasked with developing its own Terms of Reference, which will guide the work for the Committee for the rest of its term.

As it is important to the Committee to involve people with disabilities in a more meaningful way in the development of policy and legislation, the Committee would like to hear from people on their lived experience and what they feel needs to be included in the Committees Terms of Reference.

The submissions received will inform the Committees Terms of Reference so that the Committee can work to not only meet the needs of people with disabilities in Ireland, but deliver on the systematic change that the UNCRPD demands and ensure that this Convention becomes a reality in the daily lives of people with disabilities. The Committee will strive to ensure the systematic change needed, that will not only ensure that people with disabilities are integrated effectively into society, but that society can also continue to integrate into the lives of people with disabilities.

The UNCRPD aims at enabling this systematic change and social development across multiple areas of society by ensuring that people must not be treated differently or unfairly because of their disability. It also outlines what countries need to do to make sure that people who have disabilities have the same rights as everyone else. Please find further details on the UNCRPD here.

Please note that this is an initial consultation, and your submission will help inform the Committees Terms of Reference and the Committee may decide to invite a number of contributors to public hearings, should it be considered necessary. The Committee will continue to engage with stakeholders throughout the remit of the Committee and hear about the lived experience of people with disabilities on the issues that affect them and their families and/or carers.

Closing date

The closing date for receipt of submissions is 3pm on Monday, 9 November 2020.

How to send your submission

Please email an electronic document (searchable PDF or equivalent) to disabilitymatters@oireachtas.ie.

Please do not send hard copies of your submission, as this may cause confusion and duplication.

Please do not send your submission to individual committee members. The Clerk will ensure all members receive copies of all submissions.

What to include in your submission

Your submission should comprise the submission document and a separate covering letter. This allows the Committee to publish your submission without your contact details.

In the covering letter, please include:

– your name, email address and contact telephone number
– if the submission is on behalf of an organisation, your position in the organisation

  • – a brief outline of why you are making the submission
  • – an indication of whether you would be willing to appear in public session at a committee meeting
In the submission document, please include:
  • a brief introduction, for example, explaining your area of expertise
  • any factual information that you have to offer from which the committee might be able to draw conclusions, or which could be put to other parties for their reactions
  • links to any publications you refer to; there is no need to send such publications as attachments any recommendations to the committee; be as specific as possible and summarise your recommendations at the end of the document if your document is more than 10 pages long, an executive summary of the main points made in the submission

Tips on writing your submission

Keep your submission concise and to the point. Please do not include any unnecessary or superfluous material that does not relate directly to the topic.

If you refer to other publications, include links to the publications. There is no need to send them as attachments.

Please remember to number your pages.

If you would like more detailed guidance on writing your submission, please contact the Clerk to the Committee, Regina Boyle.

Important information

  • The Committee cannot consider submissions which deal with matters outside its remit.
  • The Committee cannot consider submissions which deal with individual cases.
  • Submissions sent to any other email address may not be accepted.
  • Anonymous submissions cannot be accepted and will be rejected.
  • Petitions and form letters may not be accepted or published.
  • Submissions made to a Committee may be published as received, either as part of a Committee report or separately, if the Committee decides to do so.

Making a submission is a public process

The Committee is not obliged to accept your document once it has been submitted, nor is it obliged to publish any or all of the submission if it has been accepted. However, the operations of a parliament are a public process, and you should be aware that any submissions made to a Committee including your identity may be published either as part of a Committee report, or separately, if the Committee decides to do so.

Privacy

Before making your submission, please read our privacy statement.

Contact

Clerk to the Committee:
Regina Boyle
(01) 618 3575
regina boyle@oireachtas.ie

Strong personal relationships, connections & networks give us a sense of belonging & safety

Strong personal relationships, connections and networks give us a sense of belonging and safety & Social Role Valorization (SRV).

Positive relationships are key to living a good life. We all stand to gain when all members of our communities:
contribute in meaningful ways

make positive connections with others
have opportunities to support each other.
In fact, we are hardwired to belong.

Sadly, but for many people with a disability today’s society has made this very difficult. It is important for us to remember that Inclusive communities are better places to live for all its members. Below is some reflections and helpful links for us to think about how we can support the communities we live in!

The power of difference:
We are hardwired to make judgements of those around us, we are eager to spot difference and quickly decide if the person or people standing in front of me are…

a) like me,
or
b) unlike me, being “other”, strange and different.

We do this often without awareness of what is actually happening within us, most of this interaction is unconscious. It does not mean we are a bad person. To understand this better, close your eyes and ask yourself, who would you perhaps not like to sit with on a long bus journey?, who perhaps would you not like as your neighbour next door?

However the impact on the people whom we judge to be different or as “other”, is real. People we see as “other” we tend to push away and distance ourselves from. If we see that difference in a negative way, for example ‘that person can’t talk,’ there is a likelihood that we will devalue that person. The impact on people with a disability and their lives and opportunities is very real.

To help understand this universal phenomenon of devaluation and how to counter it, many members of the ILN have used a body of knowledge called Social Role Valorization (SRV).

The basic premise of SRV is that people are likely to experience the good things in life if the hold valued social roles.
SRV acknowledges that it matters

who people are in their community and their lives (that is the roles they hold).
where and how and with whom people spend their time.

We want a community where diverse members find good things in common with each other and make room for and welcome each other.

So we need to ensure that people with disabilities are present in good, valued and typical places in our families, neighbourhoods and communities.

We need to ensure, people with a disability hold valued roles and offer contributions to other valued citizens such that their presence becomes of importance to the fabric of the community.

It is through these positive actions and roles that the perceptions and stereotypes of people with disabilities will shift. A socially inclusive society is where people with a disability

Are present regularly and frequently in ordinary places in their communities
Are doing typical, ordinary and valued things with a range of valued and typical people in the community
Are holding valued social roles based on their interests, passions and choosing
And make relevant and welcomed contributions

The information and thinking that comes from SRV really helps to guide our thinking and decision making in supporting people with a disability and society to be inclusive.

Our friend Janet Klees, Executive Director of Durham Association for Family Resources and Support (DAFRS) describes this best –

The principle of social role valorization (SRV) is not immediately familiar to most people who support a person with a disability, policy makers, funders and the community. However, the depth and truth of SRV as an anchoring principle and its implementation framework, is often clear and recognizable to people once they hear it described in common language and once people understand its effectiveness as it guides the implementation of strategies that make a positive difference in the lives of people who are vulnerable. Fairly quickly, most people can appreciate this framework as a way to safeguard and build lives of value and meaning within the hearts of our communities.

Two things impact powerfully upon whether another person is seen to be “one of us” or “one of them ” and these are:

a) the company we keep lets others know that we (a new person) are okay if we are seen together with people, singularly or in groups, that they already know and like, understand and value;

b) the roles we are perceived to hold – everyday, familiar and valued roles (sister, employee, and teacher) help others to see a person as knowable and sharing common values, while weird, unfamiliar and negative roles (adult day programme participant, special needs guy, and criminal) make others see the person as different and discomforting, causing them to withdraw or turn away.

Some roles are chosen by us in our lives (teacher, swimmer, neighbour) and others are thrust upon us by circumstances (poor person, sister, disabled person). The roles we are seen to hold are powerful ways that influence how the other will judge us. Interestingly, building relationships (i.e., the company we keep) that are rich, rewarding and safeguarding most easily arise when a person holds a range of typical and familiar roles in their lives (uncle, neighbour, drummer, volunteer, church member).

www.dafrs.com

There is much more information available on SRV and we would really encourage you to take a look at some of these websites. To get you started here are some links:

For an extensive library of SRV resources visit:

If you want to know more about how to help people who require support to have a good life in the community and create valued social roles, this workbook is a great resource:

http://www.sherwinconsulting.com.au/uploads/1/3/0/0/13003978/bpp_valued_roles_for_all.pdf

For resources developed by families who have a passion for personalised lifestyles which includes videos, talks, articles, newsletters and stories:
Www.belongingmatters.org

For short videos, articles and other resources on how families have created a good life for their loved one with a disability and how SRV has been used in practice visit:

For more information on SRV contact marykealy28@gmail.com

Building and Belonging – Resource for Manifesto Point 3

Manifesto Point 3: Our lives are better when we focus on each other’s strengths, abilities, interests and gifts.

Introducing a Booklet from the Community Resource Unit Ltd: BUILDING BELONGING IN THE SCHOOL COMMUNITY: Finding Roles that Help Students Participate and Contribute

Download the Resource here.

This booklet has been designed for families and teachers of children with a disability from Kindergarten to High School.

Inclusion is about more than physical presence at school. It is about belonging, being valued, and being able to fully participate in that school community.

All parents want their child’s school years to be full and productive, for them to have opportunities to discover their gifts, to grow and to ‘shine’ in many small ways. Students with disability are vulnerable to only being seen for their challenges or negative stereotypes. Helping children have access to valued social roles is one way families and schools can guard against this vulnerability. Valued roles provide opportunity for connections, personal development, self-esteem (and much more!) both at school and across the whole of life.

Neil Jacobson, Judith Heumann, director and producer Nicole Newnham, Jim LeBrecht, and Denise Jacobson at the premiere of ‘Crip Camp’ during the 2020 Sundance Film Festival, Utah.

Fergus Finlay: Time to loudly proclaim Disability Lives Matter

We’ve made such progress in ending discrimination in Ireland in recent years. But still, there is one group of people left out. All these years later, disability live still don’t matter.

Original article from the Irish Examiner posted 28 July 2020

by Fergus Finlay

Disability Lives Matter. I wonder how that would work as a slogan? Would anyone, I wonder, be offended, the way some people are when they hear the phrase Black Lives Matter?

You hear it again and again, don’t you, the question ‘why are you singling out black people?’ What about the fact that all lives matter? What about women, what about children, what about people of a different colour? What about, what about, what about?

All the same conditions apply — the neglect, the discrimination, the injustice, and yes — the cruelty.

If you don’t believe me on the subject of cruelty, stop for a minute and ask yourself why, years later, we are still ‘investigating’ (without a result) what happened to Grace, a young woman who was sexually abused for many years while she was the ‘responsibility’ of the State.

There’s a great irony here. While the notion of Black Lives Matter is still contested in the US, disability lives have been changed for the better by law in that jurisdiction.

And that law, the Americans With Disabilities Act, came into being because people with disabilities refused to settle for less.

You can read a fascinating current series in The New York Times, commemorating the 30th anniversary of the Americans With Disabilities Act. Or, if you have access to Netflix, do yourselves a favour and watch a movie called Crip Camp.

It’s about a group of young people who came together, around the time of the legendary Woodstock festival, at a ‘camp for the handicapped’ as it was called then.

The name of the camp was Camp Jened. They discovered all the things that young people were discovering in those days — sex and drugs and rock and roll, basically.

But they also discovered equality. Many of the young people, who had conditions like cerebral palsy, polio, and spina bifida, had never met anyone like themselves before.

It’s a modern word, whataboutery. It’s not in my edition of the Concise Oxford Dictionary (which dates from 1990). It basically means I’m going to undermine your argument by saying you’re just a hypocrite if you don’t accept that all lives matter as much as black lives.

Of course, the real hypocrites are the whatabouters. The thing they refuse to accept is that black lives matter because they haven’t mattered in the past. The age of slavery may be gone, but racism based on skin colour is alive and well.

Black Lives Matter is important as a phrase, not because other lives don’t matter, but because black lives have been the repository of a history of cruelty, neglect, injustice, and discrimination.

It’s important as a call to arms because nothing will change unless attitudes change.

It’s important as a statement of public policy because racism has become so embedded, so institutionalised, that it’s often impervious to the established law.

So I don’t want to be accused of whataboutery — because I believe absolutely in the importance of Black Lives Matter — when I say that I think the time has come to begin to loudly proclaim that Disability Lives Matter.

The discovery that they weren’t alone, and weren’t to be pitied, was transformative.

More than 10 years after they met in that camp, many of the people involved led a major sit-in of a Federal Building, and subsequently a march on Washington, to demand the signing of a single regulation, known as 504, that would ban discrimination against people with a disability in any federally-funded activity.

Later still, and in one of the most powerful scenes from the movie, the activists got out of their wheelchairs and crawled, step by painful step, up the approach to the Capitol Building.

They wanted to symbolise its inaccessibility and to dramatise their demand for what became the Americans With Disability Act.

The Capitol Crawl went into history because it fundamentally changed the dynamic and forced people with disabilities to be listened to.

It was disability activists who led that charge. And particularly a young woman called Judy Heumann, then a survivor of polio and now a world leader of the disability movement.

Judy Heumann still says that she sometimes has difficulty understanding why she is supposed to be grateful that she can have access to a disabled toilet. It’s a sentiment that many people with a disability in Ireland — and their families — could echo.

One of the defining features of the provision of services for people with a disability here is the notion that they should be grateful for what they get.

There was a Capitol Crawl moment in Ireland. Ten years after the American Disabilities Act, the Irish government — as the Celtic Tiger was getting into full swing — decided that maybe Ireland should do something.

So they produced a Bill, the Disabilities Bill 2001 — which they announced would ‘transform Ireland’, and finally give people with disabilities in Ireland some legal rights.

It was perhaps the phoniest claim ever made about a piece of law. The bill was 54 pages long. The word ‘right’ wasn’t contained in it anywhere. 

It did impose some obligations on public bodies around issues like accessibility. Every obligation in the Act was qualified by language like ‘as much as practicable’ and ‘if resources permit’.

And right at the end, there was an article — section 47 — which said, in the most explicit terms possible, that the State could never be sued if it failed to carry out any of its obligations under the bill.

That piece of legislation, as phoney as it was, almost caused a revolution. A major meeting was hastily organised for the Mansion House under the slogan ‘No Rights — No Bill’, to try to prevent the bill being introduced in that form.

Despite the fact that it was an awful night — February 19, 2001 — hundreds of people turned up to protest in appalling conditions.

As one of them said from the floor — “Yes, we have disabilities. But why does that give the government the right to think we’re stupid?” That meeting could have been a turning point.

The phoney Bill was withdrawn, the minister responsible for it, Mary Wallace, effectively lost her job, and Bertie Ahern instituted a ‘consultative process’ to draw up a new Bill.

It turned out to be just as phoney as the legislation. When the movement was worn out by the consultation process (actually a very long bullying process), the old Bill was replaced by a new Bill, which contained every qualification that had been in the old one — the only thing missing was the hated Section 47.

But the result was — and still is — that the only ‘right’ people with a disability have is the right to an assessment of their needs, and to get a statement setting out what those needs are.

They have no right whatsoever to have any of those needs met.

And to this day, even when people get their assessments, usually after an endless delay, they are basically told how meaningless they are.

It’s a great lost opportunity. The great unfought civil rights campaign. We’ve made such progress in ending discrimination in Ireland in recent years.

But still, there is one group of people left out. All these years later, disability lives still don’t matter.

Important decision by the European Parliament on the rights of people with disabilities – ETR

Press Release by Inclusion Europe

On July 8th, the European Parliament approved a decision in defence of rights of people with intellectual disabilities in times of COVID-19 crisis.

This decision is based on a petition from Inclusion Europe. The petition calls for measures that protect people with intellectual disabilities during and after the COVID-19 emergency. During the COVID-19 emergency, several European countries did not respect the rights of people with intellectual disabilities.

For example, there has been medical discrimination in hospitals. It means that people with disabilities could not have access to healthcare.

László Bercse supported the petition.  László Bercse is the Vice-President of Inclusion Europe and the chair of EPSA. He said: “we need to make sure our rights are respected and that we are not left behind.”

The European Parliament approved the resolution by

  • 682 votes in favour,
  • 3 against,
  • 10 non-voting.

The European Parliament recalls that post-coronavirus measures must be compatible with the European Charter of Fundamental Rights, describing all the rights of being a human in Europe; the UN Convention on the Rights of Persons with Disabilities.

Easy-to-read logo

The European Parliament also requests that all information about COVID-19 are: easy-to-read, and easy-to-understand.

Jyrki Pinomaa

Jyrki Pinomaa is the President of Inclusion Europe. He is very happy about the decision of the European Parliament. He appreciates that the European Parliament reassured people with intellectual disabilities and their families about their rights to have access to healthcare.

Helen Portal is the Policy Officer of Inclusion Europe. She said that this vote is important to address the harm and damage done to people with intellectual disabilities.

Click here to find more information about their petition.

All Walks of Life: RTÉ One Series

The original article is available here.

 

Watch here: https://vimeo.com/389467052 Password PAUL (courtesy of RTÉ)

In a brand new series, former President Mary McAleese brings a fascinating and diverse selection of people from All Walks of Life on spiritual journeys along some of Ireland’s most stunning and ancient pilgrim trails. Tapping into her own sense that Irish spirituality is uniquely rooted in our landscape, the former President talks to her walking companions about how life has shaped their values and beliefs (or lack of them), and how, in turn, those values have shaped their lives.

Paul Alford was born with a mild intellectual disability and grew up in institutional care away from his family. He tells Mary McAleese about his fight to work in the community, travel independently and get a place he could finally call home. Paul and Mary do the turas together in the stunning Gleann Cholm Cille, Co. Donegal.

Paul Alford was born with a mild intellectual disability and grew up in institutional care away from his family. He tells MaryMcAleese about his fight to work in the community, travel independently and get a place he could finally call home. Paul and Mary do the turas together in the stunning Gleann Cholm Cille, Co. Donegal. 

Turas Cholmcille is named after St Columba who lived and prayed in Glencolmcille 1500 years ago. One of Ireland’s patron saints, who is said to have brought Christianity to Scotland, he was exiled to Iona where he founded an abbey. Today pilgrims still follow in his footpaths to do the 15 turas or stations of this beautiful Donegal walk.

As Mary and Paul set off on their pilgrimage, he tells her about growing up in the 1960’s, when it was common to put disabled children into institutional care. ‘I had a family living in East Wall, but I never lived at home’, he tells Mary. ‘I was always away at these boarding places. It was a hard life. You lived in dormitories and if you didn’t behave you were hit with a cane. I felt upset and used to get distressed a lot, but I used to see my parents at the weekends. My mother and brother used to come out on a bicycle and bring me a few sweets and have a chat with me.’

Paul lived and worked in residential care for over 50 years, but always dreamt of a more independent life out in the community. As an adult he became involved in advocacy work for people with disabilities, because he was unhappy with the living and working conditions.

Paul has now worked in Inclusion Ireland for over 14 years and has traveled the world on his own. He has also finally been able to buy his own home.

Living in institutions for so many years had a profound impact on Paul’s relationship with his parents. ‘I was angry with my parents and I thought that they were like strangers to me, because I never lived at home in my life. I loved to see them, I loved my mother and father, especially my father Jim – he was a nice man. I would pray for them and I think they are looking down at me. They would be proud of me getting my own house and having a proper job and wages. I have surprised myself at getting this far, I thought I’d never achieve this in my life’.

Brendan Kennelly Poem ‘Begin’

“Begin”

Begin again to the summoning birds
to the sight of the light at the window,
begin to the roar of morning traffic
all along Pembroke Road.
Every beginning is a promise
born in light and dying in dark
determination and exaltation of springtime
flowering the way to work.
Begin to the pageant of queuing girls
the arrogant loneliness of swans in the canal
bridges linking the past and future
old friends passing though with us still.
Begin to the loneliness that cannot end
since it perhaps is what makes us begin,
begin to wonder at unknown faces
at crying birds in the sudden rain
at branches stark in the willing sunlight
at seagulls foraging for bread
at couples sharing a sunny secret
alone together while making good.
Though we live in a world that dreams of ending
that always seems about to give in
something that will not acknowledge conclusion
insists that we forever begin.

— From The Essential Brendan Kennelly

Audio version available here