Friday, April 28, 2017
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The theme of the National Disability Authority’s Annual Conference (12th October) in Croke Park is ensuring the availability of mainstream public services for people with disabilities. The How Walkable Is Your Town? report took centre-stage at the launch by Minister Frances Fitzgerald…

It has been Government policy for the last fifteen years, and a legal requirement for the last ten years, that mainstream public services would be planned and delivered to include people with disabilities.

Opening the conference, Minister for Justice Frances Fitzgerald TD said that

“Hearing from people with disabilities, who have been driving the mainstreaming agenda, is a crucial part of today’s programme.”

At the conference she launched the report How Walkable is Your Town?, produced by Age Friendly Ireland in partnership with the National Disability Authority.  This report gives the findings of a series of ‘walkabouts’ by a diverse group of people at different stages in life, and including people across different types of disability, to identify examples of obstacles and good practice in the daily environment of our streets and towns.

Minister Fitzgerald said

“This report is an excellent example of practical research having a positive impact on the participation of people with disabilities in their local communities.”

She also welcomed the delegation from Northern Ireland led by Mr Stephen Farry, MLA, Minister for Employment and Learning – and spoke on the conference theme.  She added:

“I welcome the cross border focus of this conference and the continuous opportunities it presents for ongoing co-operation and learning between Departments and agencies in both jurisdictions.

Minister of State, Aodhán Ó Ríordáin, TD, (with responsibility for New Communities, Culture and Equality and Drugs Strategy) emphasised the Government’s commitment to including people with disabilities in the mainstream:

“The Government’s continuing commitment to mainstreaming is emphasised by the recent launch of the Comprehensive Employment Strategy for people with disabilities and the new round of public consultations on the development of a renewed National Disability Inclusion Strategy.

Minister Fitzgerald and I will continue to work with our colleagues across Government to deliver the necessary changes to allow for improvements in the lives of people with disabilities.”

The National Disability Authority’s Chairperson, Helen Guinan, said:

“After 15 years of mainstreaming as Government policy, there is still work to be done. We need to build on what has been achieved to date. Today we will hear a lot of great examples. This learning has to be captured and embedded across the public sector.”

The conference includes practical examples from North and South of the border of how disability is mainstreamed in designing and delivering different public services and how key enablers, such as leadership, good planning and cultural change, are critical in the process.

How Walkable is Your Town? – key points.

  • Delivering mainstream services to people with disabilities is established government policy since 2000, and is underpinned by obligations for public services that are set out in the Disability Act 2005.
  • The National Disability Authority, through its Centre for Excellence in Universal Design, provides guidance and support to the public sector on producing universally designed services. In 2014 the Centre worked with Age Friendly Ireland on Walkability Audits, to inform the development of an effective audit tool for Irish roads and streets. The audits were carried out as part of the 2014 Age Friendly Town Programme, using a Universal Design approach.
  • Walkability audits were conducted in eight Irish towns and urban centres. The result was the “How Walkable is Your Town?” report.
  • The key outcomes from these audits revealed that:
    • People were for the most part happy with the structures of their towns, which on the whole provided pleasant environments to walk in.
    • People were not as happy with poor design and maintenance of footpaths, obstacles on footpaths making it difficult to get around and the need for more pedestrian crossings.
    • The behaviour of people using the towns can really impact on how walkable the towns are, for example, people parking on footpaths, blocking crossing points and using accessible parking spaces when they shouldn’t.

Paul Alford shows the possibilities for decision-making and living an independent life in the community, available to people with disabilities with a positive attitude and support from helpful people.

Paul Alford
Paul believes strongly in a persons right to make their own choices. He is moving into his own apartment. He enlists the help of an independent brokerage service to help him spend his money wisely. He hopes others can do like he has.

My name is Paul Alford. I have worked for Inclusion Ireland for the last ten years as a self-advocate.  I believe in rights for all people with intellectual disabilities.  I believe all people should live as independently as possible and live the way they want to live.  It is very important for people to have the right support and choose the person they want to support them.  This does not happen for so many people with intellectual disabilities, and I want change to happen right now because it is taking too long.

People with disabilities should interview support staff.  Everyone should have a choice and pick their support in their life.

For so long people with disabilities have not had any power in their lives.  We have chosen where we live, who we live with and who supports us.  We have decisions made for us every day.  We want our decisions listened to and respected, taken on board.  A lot of people with disabilities are afraid to speak out because they will get into trouble with management, staff and parents.

I have been fighting to live my own life independently for a long time.  Now I am going to move into my new apartment and live on my own.  I am buying my own place so I will own it for the rest of my life.  I am leaving a disability service where I have lived for over thirty two years.

houseI have got support from a service called PossibilitiesPlus.  It is a broker service – it helps people get funding from the HSE and disability services, so I can employ a support worker.  They manage your money and pay your direct support worker.  It has taken me a very long time to make the move. I had meetings after meetings – it has been difficult.  My advice to people with a disability, their parents and families is to never give up! It is worth it in the end to keep fighting and get what you want in life.

I have a good circle of support that has helped me make this happen.  I want this to happen for other people, not just myself-  If I can make the move then other people can make the move also.  Sometimes family don’t want people to move from services and live a life of their own choice.  You have to keep fighting for what you want, and not what other people want you to do.

In life it’s your choice that matters.

Author Bio

Paul Alford is a staff member at Inclusion Ireland and a self-advocate. His focus is on independent living and decision-making for people with disabilities.

Orlaith Grehan of Áiseanna Tacaíochta brings us on an inspirational journey, acknowledging pivotal moments in history and showing the crucial part that community plays in shaping our future.

Martin in front of Capitol building
Martin Naughton and his team travelled to America to travel the path of Martin Luther King Jr. in a bid to raise awareness of peoples rights here in Ireland. It has been 50 years since the famous Selma to Montgomery march, led by Martin Luther King and 25 years since the Americans with Disabilities Act (ADA) was passed.

2015 marks the anniversaries of two seminal events in civil rights and disability history which have shaped the way we all live today.

This year has focused world attention on the 50th anniversary of the historic Selma to Montgomery march, led by Martin Luther King, which united the civil rights movement in America by securing, at last, voting rights for the country’s African-American citizens.  It also celebrates 25 years since the passing of the influential Americans with Disabilities Act (ADA), ultimately brought about when disability activists took action in an event known as the Capitol Crawl to demand recognition of their equal rights.

For us here in Áiseanna Tacaíochta (ÁT), we wanted to not only pay respect to the courage and sacrifices of the people who inspired the progression of the rights that we hold dear and continue to fight for today, but to learn from them and to strengthen the bonds which loop between the rights movements here in Ireland and in the United States (US).

So, in late March, we left for American shores in our ‘Two Hearts Beat as One’ endeavour.  Although we were a small team – made up of our co-founder and Director, Martin Naughton, and his team of Personal Assistants (PAs), our Project Development Coordinator, Niall O’Baoill, and myself – we had big ambitions.  In a month-long, symbolic journey designed to connect with the key leaders and locations associated with these remarkable moments in time, we set out to honour the initiative and resilience of those who stood up – and continue to stand up – for full equality and human rights.

martin and his posseArriving in New York, we travelled down to Washington DC and on to Atlanta, Georgia, a landmark city in civil rights history.  There, we visited the Martin Luther King Center, met with disability activist and ADA campaigner Mark Johnson, and engaged with the National Center for Civil and Human Rights.

Moving on to Selma, Alabama, we commemorated the pivotal march to Montgomery by undertaking the full, 50-mile length of the walk ourselves over four days; with plenty of visits from disbelieving State Troopers and double-takes from locals who marvelled at the sight of our unusual group walking along the edge of a highway in thirty degree heat, it was quite the experience!  Arriving at the State Capitol building on April 4th, the anniversary of Martin Luther King’s death, marked a powerful moment for us all.

ann codyThe next week brought us on, then, to Washington DC, where we met with the influential disability activist – and current Special Advisor on International Disability Rights to the US Government – Judith Heumann, and delivered a presentation on Independent Living and the impact of the ADA in Europe to the State Department.  Making a stop in Philadelphia to meet with the Irish-American Congressman Brendan Boyle, we wound our way back to New York to gather with some truly innovative disability campaigners, before heading to our final destination of Boston, where we met with the Mayor, Marty Walsh.

So, why this journey at that time? Well, America holds a special importance for us, as it was there that our co-founder Martin, who had lived in institutions for people with disabilities up to that point, first experienced Independent Living while on a visit in the 1980s.  He brought the concept back here to Ireland, establishing the first Center for Independent Living (CIL) in the country in 1992, and continued on to eventually set up ÁT, the first organisation in Ireland to give complete control of individual budgets to people with disabilities and their families.  In their own ways, these marked vital milestones for the disability community in Ireland, ones which were guided and motivated by our Stateside peers; it was for this that we recognised the crucial opportunity to cement the relationships we have with them in this commemorative year.

Martin crossing bridgeBut, more than that, we wanted to raise awareness and support for a new, emerging movement for people with disabilities here in Ireland.  We shared our message and everything we encountered across social media as we travelled, calling on society to come together again and support a renewed cry for equal rights for disability communities everywhere as our journey went on.

That, in turn, led to us echoing and commending the values and experiences we came across in America in our A Declaration of Independence: The First Assembly event in Athlone in June.  Having looked to and met with those who generated their moments in time in America, we created our own, bringing hundreds of people with all types of disabilities and their communities together for the first time.

At the end of the day, it’s up to us to shape our own future.  Some of us may come from different backgrounds, live with different disabilities or come across different hurdles in our lives, but, at the core, we are all the same: we are all people whose rights are not being either recognised or realised, and we are the ones who, together, can turn that around.

martin and DAG

Those values grounded our journey to America, and will ground everything we do and seek to achieve each day.  Communities, when they come together, can spark a flame of change that genuinely brightens the future for us all.  By honouring those communities which did just that, we hope our journey throws light on their achievements, and ignites a united and rejuvenated determination to make equality, inclusion and independence the reality for every person with a disability in Ireland.

Author Bio

Orlaith Grehan is Communications Officer with Áiseanna Tacaíochta (ÁT).

Áiseanna Tacaíochta is the first organisation in Ireland to offer Direct Payments to people with disabilities and their families, enabling them to take control of their own budgets, their own services and, ultimately, their own lives.
 
For more information, please visit www.theatnetwork.com or call 01 525 0707.
 
More information and photos about the ‘Two Hearts Beat as One’ journey to America is available here.

Getting started in the world of social media in the context of intellectual disability.

social media icons
Frontline issue 100 is coming soon and the theme is ‘Social Media and how to use it well‘.
Social Media can be great but sometimes it can be hard to know what to do. Below, please find a few easy videos on how to get started using social media.
If you are not sure of how to stay safe and keep your information private while using social media then ask a friend to help you.

Frontline issue 100 is coming soon and the theme is ‘Social Media and how to use it effectively‘.

Social Media can be a great social resource for people but sometimes it can be daunting trying to keep up to date with the ever-changing trends, tools and platforms. Below, please find a few basic videos on how to get started using social media. If you are unsure of how to stay safe and keep your information private while using social media then we would advise you to ask a friend to guide you in the beginning.

We are looking for articles based on this theme but we are also looking for stories related in any way to intellectual disability.

If you would like to contribute, why not drop us a line via our contact page or via Facebook and Twitter.

Here is a basic video on how to sign up for a Facebook account….

Here is a basic video on how to sign up for a Twitter account….

Brian Manning interviews John Byrne about his extensive travelling around the world.

John Byrne Train
John Byrne talks about his travelling all around the world. He focuses on his amazing trip on the Trans-Siberian train from St. Petersburg in Russia to Beijing in China. He encourages other service users to get out there in the world and take a look.

How many holidays have you gone on?

I’ve lost count, I tend to remember the big ones.

Do you travel by yourself or do you go with other people?

I go mostly on my own, like if I go around Europe I’d tend to go on my own.

Where is the most exotic place you’ve visited?

Well, Romania, Georgia, Armenia, Bulgaria and that, I was in Albania and all them places.

Do you ever go on holidays with people?

I went a few times down the country (in Ireland) with assistance, to give a dig out, give them a hand. And sometimes I go on holiday with my brother.

How do you find travelling on your own? Is it dangerous? Is it lonely?

No, not really, you get used to it. Well, maybe a bit, back in the ’90’s, when I started going to

these strange countries but when you get to know them first-hand you get a feel for where you are going.

If you get to a far-away country like Kazakhstan how do you book a room and how do you understand people?

It’s very hard when you get into places like Kyrgyzstan/Kazakhstan because English isn’t spoken very much. They might ask you do you speak Russian but I don’t speak Russian. Russian is like a second language in all those countries around there. But you get by. I know someone in Kazakhstan and I went to visit them.

How often do you like to get away?

A few times a year if I can but it depends on funds. I don’t drink or smoke, you know, I like to save my money for travel.

john byrne 2

Your passport must have a lot of stamps in it!

It does, and visas too. After you pass Romania and those countries you need a visa for Russia, Mongolia, China and the like. I have a lady called Hannah in Dublin who helps me get visas. She works in Visa First in Stephen’s Green, Dublin.

 Have you been through any border crossings?

I crossed a few. From Kyrgyzstan into Kazakhstan. It was ok. Sometimes there are armed guards. The problem is that Kyrgyzstan is so poor and Kazakhstan’s one of the richest places out that way so a lot of people want to go there.

 People reading this might imagine these places to be very dangerous.

Anywhere at all can be dangerous. Sure, Dublin City at night time can be dangerous.

You went on a big trip recently?

Yes, in 2013. Myself and my brother we flew from Dublin to Helsinki, Finland. We stayed there 2 nights and had a gander around the city.

Then we took a high speed train to St. Petersburg, where we met up with a group of tourists and checked out the canals and lakes by boat. It was the Summertime, so it was bright till about 11 o’clock. This year when they put the hour back (for daylight savings time) they decided not to change it anymore.

After 2 days in St. Petersburg we took the train to a place called Vladimir, and then on to Suzdal, and from there to Moscow. We stayed there for 2 nights and visited the Kremlin and the undergrounds. Then we took the Eastbound train to Irkutsk, which lasted about 3 days. When we got there, we went to a small local village and the man who organised the trip, his name was Eugene, showed us local life, local cooking. There was rock-climbing but my brother and I decided not to chance it so we went for nice walks in the forests.

The local people were so nice so we decided to go into the local community hall where there were discos. The kids were in there, there were no adults, the kids were very good, they played their music and all. Next we travelled back in to Irkutsk, which is beside a big lake that is so big you think you are looking at the sea!

Next, we took a train to Mongolia, to a city called Ulaan Bataar, the capital city. A nice place was the Buddhist temple in the city. Years ago, all the people in Mongolia used to live in tents called ‘yurts’ so we went to a camp to see people living like this.

yurtsIt was a really beautiful place with lovely scenery and more home-cooking again! We went back to Ulaan Bataar and were fed up eating strange food. Luckily enough a few weeks beforehand a KFC had opened up in the city! So we said we would go to KFC for a change.

Next up was a train to Beijing which took over a day. The views were amazing and we passed through the desert. At the Chinese border the train stopped and we had our passports checked. Next thing we know the wheels had to be changed on the train because the tracks or the wheels are different. So, off we went and we arrived into Beijing into one of the busiest stations you could ever see! After we got to our hotel we went for a look around. I said to my brother, “there’s a McDonald’s! I’m goin’ there.” Because I’m a little fussy with what I eat. I’m afraid I might get sick. I have that on my mind. But I tell you what I lived on…..Chinese noodles. They were nice and I bought my own tea and that.

great wall of china

The group we were with were nice. We went to see the Great Wall of China which was amazing and as we were walking down we met 2 people from County Kildare. Even though you are so far away you will always meet someone from Ireland. My brother and I went by ourselves to see Tiananmen Square because we like to see as much as possible.

Next we flew to Abu Dhabi and then home.

Do you have any plans for the future?

Yes, this year I’m just going to stay local. I’m going to Georgia in a few weeks’ time. Then just going to do an Inter-Rail in September. I’m going to Romania for a week at the end of July.

I’m going over by bus and coming home by flight. The bus goes from Belfast and travels all the way by land to Romania.

I hope to go to Australia by myself again next year. I’d like to travel from Melbourne to Darwin and see Ayers Rock. I’ll look at prices in the next few weeks. I can pay the flights off a little bit each week.

Next year I also want to travel starting off in Rosslare to Fishguard, Fishguard to London, London to Brussels, Brussels through Austria, Hungary and Romania, spend 2 days in Romania, from there go into Moldova, Ukraine and into Russia. I’d like to travel by myself, not with a group – on to Irkutsk, then Ulaan Bataar in Mongolia, then down to Beijing. Then I want to extend my trip down to Vietnam and into Cambodia and into Thailand. From Thailand I want to go down into Malaysia and then into Singapore. Then I want to take a flight to India for a few days to see what it’s like. Then on to Abu Dhabi and then Dublin.

That’s my plan for 2016, Please God.

Moscow

Would you encourage other service-users to travel?

Well, I would but not everyone has the same spirit as me. It’s not for everybody.

Do you think your travels have changed you?

Well, you see different countries and the way they look at life, their lifestyles. Some of the healthiest people you could meet.

Cormac Cahill of Inclusion Ireland shows us a little of what can be achieved in purpose-built, accessible accommodation for people with physical disabilities.

Accessible facilities 1
Muscular Dystrophy Ireland (MDI) have a ‘Home from Home’ apartment in Dublin. It is available for short-term stays for people with a physical disability and their friends and family members.

Muscular Dystrophy Ireland (MDI) is a voluntary organisation that provides information and support to people in Ireland with muscular dystrophy and allied neuromuscular conditions, and their families, through a range of support services.

The MDI ‘Home from Home’ apartment is located in a new purpose-built, fully accessible self-contained building in Dublin. It is available for short-term stays for people with a physical disability and their friends and family members.

The apartment consists of four bedrooms, a kitchen and a lounge area and can accommodate groups of one to six people.

Guests are asked to make a voluntary contribution of €25 per room, per night to stay in the apartment.

Accessible facilities 2

The apartment is equipped with aids and appliances, including ceiling and standing hoists, shower chairs, grab rails, an intercom system, emergency call buttons, emergency evacuation chairs, an adjustable kitchen counter and air mattresses.

Three of the four bedrooms in the apartment are fully accessible and contain Hi-Lo electric profile beds and ceiling tracking hoists.

Each of the bedrooms has its own bathroom, all of which are also equipped with a ceiling track hoist. The bathroom and shower can be accessed directly by use of the inter-connecting ceiling track hoists between the bedroom and bathroom. All visitors to the apartment are advised to bring their own slings.

Please note that the twixie clip slings do not work on the hoist system. The fourth bedroom contains a standard single bed and is primarily used by personal assistants and family members.

The kitchen is equipped with an adjustable motorised work top which enables the work surface height to be adapted to a suitable level for all users. It contains all modern appliances and laundry facilities.

Availability throughout the year varies, but the MDI is more than happy to accommodate anyone with a disability and their friend and family members when they can.

The ‘home from home’ has been used by people going to concerts, international visitors, as accommodation during or awaiting a hospital appointments and by people who wish get experience of Independent Living.

MDI provides information about how to use equipment within the apartment and other necessary information to help you to make the most of your stay.

MDI also provide you with information about services available in the local community, places to visit in Dublin and details about local public transport and other ways to get around Dublin.

Accessible facilities 3

To book the apartment please contact MDI on (01) 6236414 (from 9.00am-5.00pm) or email owen.collumb@mdi.ie.

Further details about the apartment and MDI can be found on www.mdi.ie

For more information, please follow this link: www.mdi.ie/home-from-home.html

Author Bio

Cormac Cahill, Communications & Information Officer

Inclusion Ireland, Unit C 2, The Steelworks, Foley Street, Dublin 1

Office: 01-8559891  Mobile: 086 837 3394  Fax:  01-8559904

cormac@inclusionireland.ie

www.inclusionireland.ie

It’s a busy life for an active member of the community with special needs, as John Feighery says in his first article for Frontline Magazine.

My name is John Feighery. I am 24 years old, I have special needs. I was born with Down’s Syndrome but that has not stopped me from growing into an active member of my community.

I am a volunteer in Porterstown Pastoral Centre. Every Sunday from 11:00am-12.30pm, the community meet for a cup of tea and a chat after Mass. My role is to give out the tea and biscuits, I also collect rubbish and wash the dishes. I am very friendly and I talk to everybody, especially the children.

I am also a Minister of the Eucharist for the church. I take part in the local pantomime every year. I sing and dance and have a part to play. I am the same as everyone else in the pantomime and we make the audiences very happy.

There is a lot of sadness in the world so when my friends and I in the local Special Olympics ALPs decided to have a Book and Art sale, we decided to give the money we made to a good cause. We picked the Laura Lynn Hospice for sick children. We made €1,700- The director of Laura Lynn was delighted with that donation from our group and we were happy to help sick children.

I often give presentations to Transition Year students about my life so that they may understand that just because I have special needs, it does not make me any different from them.

My Dad says that it is good to help out in the community, because it encourages other people to help out also. My mentor and I asked my parents what my good points were, and they said that I was a very good listener, that I would talk and listen to all the families who come to church for Mass, Christenings and Marriages.

When I talk to people and they have worries or sick family, I pray for them every night. People like to talk to me because I am a good listener and I make friends easily with everyone.

I work for two hours every week in a Starbucks Cafe. I love when people I know come in for a cup of coffee. I also have a work placement in the Elbow Room in North Brunswick Street. I am able to get there by bus which makes me very independent. I would enjoy having another job near home.

I think that people are comfortable talking to me. When I go to the local shop and shopping centre I make lots of friends. I love the Golden Discs shop and I know all the people who work there. When I go to the town centre people from the Cinema, Eason’s Book shop and clothes shops all know me by name and talk to me.

I wanted to write this article to let people know that I, as a special needs person, have a lot to offer in my community.

Author Bio

5 - Citizen John - John Feighery photoWhen he’s not busy working and helping in the community, John Feighery lives in Clonsilla, Dublin, 15.

On 29th September 2014 Irish Distillers, under the leadership of Denis O’Reilly of Difference Days, arrived at Rosanna Gardens to undertake a garden transformation. Difference Days was founded in 2009 to facilitate corporate socially responsible events, whereby staff from organisations experience an ‘alternative day out’ and give their labour for one day to benefit others - basically a team-building day with a difference! The Sunbeam Times spoke with Denis to ask how the process works and what the experience was like…

Difference Days team
  • Irish Distillers gave up a day of regular work to team up with Sunbeam House Services.
  • The goal was to get the 2 staff teams together and build a large garden in Ashford for the Sunbeam service-users.
  • The project was organised by Difference Days.

How did it come about that you undertook a garden renovation project at Rosanna?

Having done two previous Difference Days in Sunbeam House – one at Killarney Road, Bray (deck, football pitch and gym), and the other in Ballyraine, Arklow (woodland trail), both with staff from Hostelworld.com – I contacted John Hannigan and Bernard Fitzsimons to see if we could help with other requirements, as I had to find a suitable project for Irish Distillers Pernod Ricard who wanted to do a Difference Day with 250 of their staff.  Once I have a requirement I go and find a project – I knew how well we had worked with Bernard and all at Sunbeam before, so I knew we could work well together again.

What was the next step?

Bernard introduced me to the guys at Rosanna and showed me the overgrown rear space, and immediately I could see that it could be transformed and make Rosanna an even better place for the men and women that live there. I then got some feedback from Seamus Murphy and Bernard on what Rosanna would like.

Our landscaper Maurice Byrne and I then inspected the site with Bernard and we started to put together the proposed design – Maurice came up with some great ideas like redirecting the stream so we could make the island/memorial garden. The idea was to have a space that could be used by all the residents at Rosanna and other Sunbeam sections.  The raised beds would allow vegetables to be grown, the exercise trail would be used for fitness, and the BBQ area for having fun!  We then priced up the costs to implement the transformation of the space, and I arranged for Rosemary Garth – Communications Director, and John Carroll – Irish Distillers, to inspect the space and meet the residents.  They just loved the plans and the guys from Rosanna.

Once the project was approved by Irish Distillers we had a meeting with Bernard and planned the timescale for the preparation work to be undertaken by Maurice and Adam Rankin from Difference Days and supported by Bernard and his team.

How much preparation was required?

Maurice and Adam did around four weeks of preparation work (with Bernard’s team assisting) so that the shape of the garden was framed, ensuring that the Irish Distillers 250 strong team could complete the garden on their Difference Day.  In addition we had all materials delivered and tools ready.

On 28th September we had a site meeting with all the Sunbeam team that were assigned to help on the Difference Day, along with our Difference Day team, so everyone knew what their tasks were for the next day.

Tell us about the day itself-…

On the day itself, 29th September, DJ Ed (a resident of Rosanna) had his music pumping.  The Sunbeam team came together to welcome the Irish Distillers team as they arrived, and there was tea and pastries for everyone. We subdivided the teams into 15 projects and off we went and built the garden in 3 hours!   It was fantastic to have all the residents of Rosanna and many other clients from Sunbeam on site to help and to meet the Irish Distillers volunteers.  The support and camaraderie from staff and clients from Sunbeam was amazing.

We managed to get everything completed in the three hours – the Irish Distillers staff worked like mad and were truly amazing.  The garden came out better than anticipated and the feedback from the Irish Distillers crew was exceptional – they just loved meeting everyone, particularly the residents from Rosanna and other centres.  Irish Distillers were so proud of what they achieved on the day and what they left behind for the guys from Rosanna.  Rosemary Garth (Communications Director from Irish Distillers) stated that some of her colleagues commented it was the best team building day they had ever done!

rosanna project

SOME FACTS

225 Irish Distillers Pernod Ricard Staff

15 projects completed.

12 ton of beach cobble placed along the bed and banks of new stream.

110 ton of hardcore.

60 ton of Ballylusk dust used for wheelchair-accessible paths.

Equivalent to 4 tennis courts of rolled lawn laid.

49 wheelbarrows, 106 shovels, 39 rakes, 14 hammers, 24 spirit levels,

12 handsaws and 200 ear protectors provided.

Garden built in 3 hours.

PROJECTS

Project 1 – construct/plant stream bank

Project 2 – build 7 metres x 2.4 metres barrel style screen

Project 3 – build tree seat surround

Project 4 – build main roadway/circular section

Project 5 – construct exercise zone (8 zones)

Project 6 – construct picket fence 13 metres x 1.2 metres

Project 7 – build central pathway/boundary pathway

Project 8 – memorial garden (Joe Nolan)

Project 9 – construct bridge 4 metres x 1.6 metres

Project 10 – BBQ area – construct circular Ballylusk base and build equipment

Project 11 – bamboo screen 6 metre

Project 12 – old stream planting team and move to turf lawn project 3 & 13

Project 13 – construct gazebo/veg. planters/turf lawn area

Project 14 – screen/ballylusk rec. court 7 metres x 2.4 metres high

Project 15 – erect glasshouse.

SOME COMMENTS

It’s a beautiful garden and I like it very much and I really enjoy it – Sean Sheekey.

I want a swing in the garden – Christopher Doyle.

It’s excellent – Martin Byrne.

For Joe Nolan – Fintan Finnegan.

From the start it looked like a swamp, and now the way it is, is fantastic – Edward Byrne.

A good place to sit down on a sunny day – William Gregory.

The majority of clients would use the garden on a daily basis for exercise or even just sitting out or walking around.  Even though it’s cold at the moment, they wrap up and go out.  They are much more interested in using the garden now than they were before – Staff at Rosanna.

rosanna project 2

Bernard Fitzsimons:-

We took a garden that was very barren, and financially we could not achieve what was achieved by Difference Days.   Irish Distillers paid for everything and funded it all – Sunbeam House didn’t have to put their hand in their pocket for anything.

For two weeks before Difference Days arrived, a lot of preparation work was carried out by TÚS workers from Ballyraine, by Maurice and Adam of Difference Days, and by Rosanna staff and others.

The whole garden is called the Joe Nolan Memorial Garden, in memory of Joe Nolan who was a staff nurse at Rosanna but who sadly passed away last year.  Irish Distillers did not want any mention of themselves in the garden, as they were doing the work in the total spirit of giving back and didn’t want any undue publicity.  The local Red Cross were there in case of accidents, but thank God they weren’t required.  They donated their services free of charge.

When the work was finished, Irish Distillers provided a hot lunch via a catering company whom they had used before.  The food was amazing, and included two pig spit roasts!  Sunbeam then presented a cake to Irish Distillers.  Irish Distillers staff got back onto their buses and headed off to a conference, where I’m sure they had a chance to recover from their activities.

The TÚS workers couldn’t believe the change in the garden when they saw it after it was finished, and the garden was used that very first night for one of Sunbeam’s Rosanna staff who was celebrating a birthday.

I want to thank Denis, Adam and Maurice from Difference Days, Rosanna staff who helped out in advance (particularly the weekend beforehand), the Red Cross, Sunbeam staff and clients, and anyone who showed up and gave a hand in any way.

Bernard Fitzsimons

Author Bio

Bernard Fitzsimons is a staff member in Sunbeam House Services.

 

Denis O’Reilly founded Difference Days in 2009.

Jeanette McCallion welcomes movement towards a community-based social care model, but cautions that complex medical needs among people with intellectual disability still require medical services, previously provided in congregated settings, to be maintained and improved in this environment.

Jeanette and Cliona
  • The RTE documentary on Áras Attracta was very difficult for anyone to watch, but especially when you have a close family member with ID.
  • The only good thing to come out of the footage is that it started to make people take more notice of the care given to people with ID.
  • There is lots of discussion about change, and closing down centres such as Aras Attracta to set up more homes in the community for people with ID.
  • I am in favour of this in general, but the ‘one size fits all’ approach will not work for everyone.
  • Unfortunately my sister has such severe seizures that she needs a nurse with her at all times.
  • Because the centres are no longer taking in new people, and without there being special nursing care houses in the community, she is without a service.
  • I hope that this will soon be noticed and those who need medical care get the services they need.

In December last I watched RTE’s Primetime Investigates on Áras Attracta, Bungalow 3.  Knowing in advance that the footage would be bad, I debated with myself whether I should make myself watch it or not.  The main reason for my unease is that my seventeen year old sister Cliona has profound ID as well as an extreme epilepsy syndrome that no seizure drug has ever been able to influence.   At some stage in the future Cliona will be in full-time residential care.  In fact, suitable full-time residential care within a local service not unlike Áras Attracta is our ‘holy grail’, something that we have been relentlessly pursuing for Cliona over the last few years.

Watching the documentary was particularly painful for me. I could not believe the brutal force and complete lack of respect I was seeing.  All I kept thinking was ‘this could be Cliona’.  I felt nauseous, and so, so angry.  The abuse so clearly highlighted in the footage cannot be blamed on cutbacks or staff shortages.   I watched staff members idly sit around texting on their phones and watching television, amidst sickening displays of cruelty, violence, and taunting of elderly women with profound ID.  I could not stop thinking about it afterwards.  As the media storm took over the following day, I wondered what sort of a country we live in to provide ‘services’ like these to our most vulnerable?  I was embarrassed to have trained in a health system where this kind of inhumane treatment could happen.  There followed lots of discussion by government ministers on whether this sort of abuse ‘could’ be happening elsewhere.  How could anyone be so sanguine as to believe that this happened only in one particular house, in one particular centre, in one particular county?  I think the entire country was ashamed and appalled.  But when you face a future where your most loved family member will one day depend on the care provided by this state, this footage takes on a whole new dimension.

I was heartened though, by the amount of noise and public outrage that ensued following the documentary.  At least there was talk about the state of ID services in this country.  Intellectual Disability is usually an area that struggles to attract media coverage and has not the same appeal as other areas for grabbing the public’s attention.  Unlike cancer it is always there, consumes lots of money, and will never be ‘cured’.  Cynics would also say that people with ID are low priority when it comes to funding, as they are a group of our population that cannot assert themselves through our democratic system.  Even within medical training, the area of ID is hugely neglected.  Although I trained as a general practitioner, over my many years studying and training on the job I did not get any specific training in this important, challenging and complex area that needs well-trained and interested doctors.  There should be specific training for doctors for some of the challenges that arise in looking after the complex needs of people with ID.

Another positive that arose from the awfulness of Áras Attracta was that it prompted me to attend the Inclusion Ireland AGM in April for the first time.  Up until then my entire focus was helping with the care of my sister, advocating for services for her, and not really contributing to the collective cause.  I now realise that I need to voice some of the difficulties and challenges we are facing with Cliona on a bigger stage, as I know that we are not the only family going through this.  I believe that families are so consumed with coming to terms with their child’s or sibling’s disability, as well as navigating the disability services, fighting cutbacks and knocking on closed doors, that they have no time or energy left to try to raise the issues on a more collective level.  I think it is especially important at the present time to become involved in advocacy for ID, as there seems to be movement towards changing the way care is provided.  And no-one can argue that change is not needed…  However, change needs to be carefully considered, and needs to remember everyone with ID, those with mild to profound ID as well as those with complex medical needs like my sister.

One term that I have become very familiar with in recent times is ‘decongregated settings’, which I understand to mean that new admissions to congregated-type centres will no longer happen, and that the current centres will be replaced by a community-based social care model.  The 2011 HSE policy ‘Time to Move on from Congregated Settings – A strategy for Community Inclusion’ outlines the detail of this plan.  I have read this report with great interest and I can see that there is good evidence from other countries to support this approach.  I clearly see that many people with ID could be better served if more closely integrated into the community.  However, the closed doors of the current congregated services have not been replaced by equivalent services in the community.  Furthermore, for those like my sister with complex epilepsy, or other medical needs there appears to be no discussion on how medical/nurse-led care will be provided in the community.

Currently Cliona is being cared for in the family home, with agency care staff paid for by the HSE through a private organisation, as there is no community nurse care available to her.  Because of limitations in the scope of the social care model around medication and seizure management, we as Cliona’s family have to be heavily involved.  My parents are in effect the house managers, and fill the gaps where a staff member cannot show up.  Each time new staff comes to the house, my parents try to train the carer on the complexities of caring for Cliona, and the different types of patterns she goes through.  The care-staff are wonderfully caring, and really seem to enjoy caring for Cliona, but often speak of how medically complex she is and question why she has not a nurse present with her.  They have had to manage some very severe and distressing tonic clonic seizures to the best of their ability.

What would I like for my sister?  Sadly Cliona’s seizures will never be cured, short of some miracle treatment for her unique type of epilepsy being developed.  I would like her to be accepted by a specialist ID service, either in a congregated centre with nursing care or in a nurse-led community house.  I am very concerned that the small percentage of people with ID who, like Cliona, also have complex medical needs, are being forgotten in the well-intentioned move to ‘Decongregated settings’.  Let’s not forget the minority within the minority; those with ID who also need clinical support for their complex medical needs.

Author Bio

Jeanette McCallionJeanette McCallion is older sister to Cliona, who is 17 years old and has a rare serious epilepsy syndrome with profound ID. She lives in Dublin not far from her parents and Cliona. Jeanette trained as a GP following her medical degree at Trinity College, and spent several years working in the Dublin hospitals and various GP practices around Dublin and Kildare. She is currently working in the area of Pharmaceutical Medicine.