SBHI Annual Report 2018 by Spina Bifida Hydrocephalus Ireland

SBHI Annual Report 2018

Reference and Administrative details Directors’ Annual Report and Financial Statements

January 2018 – December 2018

The National Association of Spina Bifida and Hydrocephalus Ireland CLG

Charity number: 5833

Trading as: Spina Bifida Hydrocephalus Ireland (SBHI)

Company number: 455619

A company limited by guarantee

Charity registration number: 20009366

The SBHI structure 2018

Registered office and principal office of the organisation

SBHI Directors on the date the Annual Report was approved:

Spina Bifida Hydrocephalus Ireland (SBHI) National Resource Centre, Old Nangor Road, Clondalkin, Co. Dublin. D22 W5C1

Chairperson: Peter Landy Vice-Chairperson: John Henry Treasurer: Gerry Bell Head of SBHI Governance: Úna Keightley Membership Development Officer: Jane McDermott Company Secretary: Fiach McDonagh Accountant/Auditor Alan Keane and Co. Unit H3 Centrepoint Business Park, Oak Road, Dublin 12

Solicitor Millett and Matthews Solicitors, Main Street, Baltinglass, Co. Wicklow. Principal bankers AIB 45/46 Tower Road, Clondalkin, Co. Dublin. D22 X018

Contents Chairperson’s statement

CEO’s Statement Summary of the Organisation’s Purpose and Activities

6 8

Achievements and Performance - Family Support Service

- Respite and Recreation

- Education and Training

- Resource Centre Clonshaugh

- Communications

- Fundraising

Operations

Structure, Governance and Management

Finance Section

Chairperson’s Statement As I prepare to write my address for 2018 my initial thoughts are for the many families of members who lost loved ones throughout the year. 2018 would well be described as our annus horribilus on this level and I, on behalf of the Board, offer our condolences to all within our organisation who have lost a loved one close to them during this year. I would encourage anyone affected by anything related to these issues to seek the support of our organisation. The number to call is 01 457 2329. 2018 was another very busy year for Spina Bifida Hydrocephalus Ireland (SBHI) as we celebrated our Golden Anniversary. The Board continues to adapt policies around various governance areas within SBHI. I am delighted that at the 2018 AGM our new Constitution was unanimously adopted. This Constitution now sets out the way our organisation will be governed going forward and together with our recently adopted Governance Handbook, we have a robust and relevant Constitution and rules for a vibrant and progressive organisation as we move forward into 2019. The Constitution documents have been 18 months in the making, and I wish to acknowledge the hard work of the Board members and advisors, our CEO and legal professionals in bringing them together in language that is user friendly.

The Board met on average every five weeks during 2018, with 10 meetings in total. Members also participated in Board training days hosted by The Wheel and the Disability Federation of Ireland (DFI) to upskill ourselves in relation to governance and regulation coming from the Charities Regulator. On the financial front, 2018 was indeed very challenging with a cut of over €50,000 from National Lottery funding from the HSE when compared to 2017. Instead of accepting the deficit or cutting back on our respite services, we decided to fundraise the €50,000 and sustain our normal level of service. Thanks to the hard work of our main fundraising effort – the 2018 Marathon Man to Ironman, Stephen Martin – and many of our staff, members and their families, we managed to fill the gap left by the cut from HSE Lottery funding. My biggest frustration on the funding front is that the HSE has not restored the cut of 2010 to our Section 39 funding for salaries to our staff. This situation must be rectified without delay as the future sustainability of our sector is under threat and our disability representative organisation must pressurise the Government to restore this cut to the only sector not dealt with yet in terms of restoration. A decision made by the Board to increase the number of Board members by seeking people with expertise in specific areas is beginning to bear fruit and we hope to make a new appointment to the Board soon.

The Board welcomed the appointment of Jane McDermott at the AGM in May 2018 as our Membership Development Officer. Jane is proving to be a valued member and is hoping to set up a new Members’ Forum during 2019. One of the highlights of the year has to be our award win at the National Lottery Awards in the Health and Wellbeing category in October. It is fitting that we received this award and we congratulate all involved in bringing this to SBHI. Let’s hope it is the beginning of something great for 2019. As the year draws to a close, we have received signs that we could benefit financially from our higher profile thanks to the recent award win and the ongoing work of our Fundraising and Communication Officers. Fundraising is a long game and very often it takes time to see the true fruits of our labour. With this in mind, may I thank everyone who fundraises on behalf of SBHI and I ask you to continue your efforts by encouraging friends, work colleagues, clubs and societies to help us in keeping SBHI financially sustainability into the future. I want to thank my fellow Board members, advisors, the NEC, Branches, volunteers, CEO, and staff for your ongoing support of me throughout 2018, and I look forward to continuing as your Chairperson into the future. Let’s continue to celebrate in 2019 and in doing so continue to support those who know spina bifida and/or hydrocephalus to be a reality in their lives.

“

Thanks to the hard work of our main fundraising effort – the 2018 Marathon Man to Ironman, Stephen Martin – and many of our staff, members and their families, we managed to fill the gap left by the cut from HSE Lottery funding.” Peter Landy Chairman, SBHI

CEO’s Statement As we end another challenging and successful year at SBHI, it is great to reflect on where we have come from ahead of embarking on 2019. As we fought to overcome significant funding cuts from the HSE National Lottery, our fundraising efforts were increased and I myself took on two challenges as part of our 50 for 50 Challenge, which was to raise an extra €50,000 as part of our 50th Anniversary year. The Great Fjord Swim and the Dublin Marathon really tested every fibre of my body, but I was delighted to complete both and raise funds for our unique cause. I was joined in the fundraising commitment by colleagues and members who used their imaginative ideas to help meet the funding required to sustain our service, especially in terms of keeping our Family Support Team on the road and in ensuring our respite services remain open to all. It was a difficult year in terms of having say goodbye to several members who passed away far too early, our efforts must ensure that their lives are celebrated and that the barriers they faced are removed for current and future generations. Part of seeing this goal realised is dependent on awareness raising, and we were all in dreamland when we were announced as winners at the National Lottery Good Causes Awards, Health and Well-being category 2018. The coverage in the media was extremely positive for us and we will be capitalising on this in the months and years to come.

Awards like this are only achieved through the energy and commitment of our experienced staff, and for all that went into achieving this, I thank my colleagues for serving our mission and service users so professionally. The end of the year saw some major funding success in the shape of SBHI being announced as Dublin Airport Authority Charity Partner 2019, a successful Dormant Accounts Funding applications for the SHARE project (€199k over 18 months), and a commitment from a Trust to support our Health Development Project for the next three years (€50k a year from 2019-2021). Our success is very much the product of continuous team work on the part of our Board, Branches, staff, volunteers, members, and service users. Together we form a powerful group and it is an honour to work in such a committed environment day in, day out. I look forward to the coming year and all that 2019 has in store for SBHI. Tom Scott CEO

Summary of the Organisationâ&#x20AC;&#x2122;s Purpose and Activities Our purpose Our purpose is to be a powerful community, united by spina bifida and hydrocephalus, and moving together towards fulfilled futures.

Our core values

Our main activities…

• Include: We will work to offer relevant, inclusive, and effective support to everyone in Ireland who knows spina bifida and or hydrocephalus to be a reality in their lives. • Communicate: We will provide exceptional standards in communications in all areas of our work. • Excel: We will develop our governance practices to a standard of excellence. • Sustain: We will develop sustainable models of funding for the long-term future of the organisation and those we seek to support.

Spina Bifida Hydrocephalus Ireland (SBHI) is the only national organisation which exists for all those living with spina bifida and/or hydrocephalus in Ireland today.

Our key objectives • To provide information, support, and advice to people with spina bifida and/or hydrocephalus, their parents and carers. • To promote social inclusion and quality for people with spina bifida and/or hydrocephalus in Irish society.

Over

1200 106 members

The organisation was established in 1968 and since then has developed into a charity which offers support via the following departments: • • • • •

National Resource Centre (Clondalkin) Family Support Service Respite and Recreation Education and Training Resource Centre (Clonshaugh)

SBHI is funded by a combination of Service Arrangements with the Health Service Executive (HSE), other grants, and fundraised income. There also exists an SBHI Branch structure which offers support in some county areas.

individuals attending SBHI respite breaks

Celebrating years of service

Achievements and Performance

Family Support Service Main Activities/Developments New Staff Members: This year we saw some changes in our staffing within the Family Support Team with the recruitment of three new Family Support Workers. Amy Doherty – Is our part-time Family Support Worker who is covering a career break post and is responsible for support in the South Dublin/Wicklow areas. There is continued rapid growth in this area with an increased need for supports. Consistent new referrals are received on a regular basis with Amy engaging with new members and service users, as well as the continued demands of complex cases in her areas. Paige Parker – Paige is now the full-time Family Support Worker for the Louth/Meath/Cavan/Monaghan areas and is adjusting well to the role. Complex cases are increasing demands on time and resources and Paige continues to engage in established member support groups in her areas. Dr. Patricia Leahy – Patricia is the new full-time Family Support Worker for Cork/Kerry and is also adjusting well to the role. Patricia is continuing to invest time in building networks in the areas as well as supporting members in establishing support groups locally.

Achievements and Performance

Community Support Groups: Some of the Family Support Workers have been successful in maintaining beneficial support groups in their areas. These groups take the form of Parent Groups, Adult Groups and Coffee Mornings which offer members, parents and carers the opportunity to meet as a group and support each other as well as build peer networks and friendships. Numerous attempts have been made by all FSWs across the country to establish such groups, but some have been unsuccessful due to many reasons such as geographical location, poor group numbers and lack of consistent attendance, however, staff will endeavour to continue to establish such groups in their areas in 2019. Person Centred Planning: The Family Support Service always strives to implement a Person-Centred Approach to our work, which ensures we put the individual with spina bifida and/or hydrocephalus at the centre of the planning process. This work continues through the use of our Individual Pathway Plans and service user-led supports.

Favourite moment of the year: Family Weekend. The SBHI Family Weekend is always a very well received event with consistent interest from families across the country in attending each year. The event depends heavily on the support of the HSE National Lottery funding which can vary from year to year, but we always endeavour to provide the best possible weekend for families. The purpose of the event is to facilitate an inclusive break that is packed with fun and relaxing activities as well as offering an opportunity for families to come together and meet those with a shared experience, enabling them to grow their support networks. Unfortunately, due to a severe weather warning this year the event had to be postponed until March 2019 and will be held in the Galway Bay Hotel. SBHI will also aim to host a second Family Weekend Event again later in 2019. 11

Respite and Recreation

The Respite and Recreation team facilitated another dynamic year of breaks and events in 2018, these included… Valentine’s Social Night Saturday 10th February Maldron Hotel, Tallaght, Dublin 35 participants attended from Dublin, Kildare, Clare, Wicklow, Louth/Meath.

April Midlands Trip Saturday 21st April Athlone Town Participants: 7 adults From: Midlands (7)

Children’s Respite Friday 23rd February to Sunday 25th February Carmel Fallon Centre, IWA, Blackheath Drive, Clontarf, Dublin 3 Participants: 5 children From: Louth/Meath (3), Dublin (1) and Kildare (1)

SHINE Sandalwood Week Friday 29th June to Thursday 5th July Coolnagreina, Trafalgar Road, Greystones, Co. Wicklow Participants: 12 adults From: Louth/Meath (2), Dublin (3), Donegal (1), Wicklow (1), Mayo/Leitrim/Roscommon (1), Galway (1), Limerick (1) and Kildare (2)

Adult Getaway Saturday 10th March to Tuesday 13th March Share Discovery Village, Fermanagh Participants: 10 adults From: Dublin (5), Kildare (1) and Louth/ Meath (4) Teenage Break Tuesday 3rd April to Friday 6th April Share Discovery Village, Fermanagh Participants: 10 teens From: Dublin (1), Midlands (1), Mid-West (1), Wicklow (1), Tipperary (1), Mayo (1), Louth/Meath (2), Cork (1) and Cavan (1)

SHINE Lemongrass Week Saturday 14th July to Friday 20th July Share Discovery Village, Fermanagh Participants: 12 teenagers From: Louth/Meath (3), Kildare (1), Dublin (1), Cork (1), Limerick (2), Donegal (1), Mayo/Leitrim/Roscommon (1), Midlands (1) and Cavan (1) SHINE Sunflower Week Saturday July 28th to Friday August 3rd Cuisle, Donamon, Co. Roscommon Participants: 11 From: Wicklow (2), Mayo/Leitrim/ Roscommon (3), Dublin (5) and Kildare (1)

SHINE Tigerlily Week Sunday August 12th to Saturday August 18th Ozanam House, Mornington, Co. Meath Participants: 17 From: Dublin (5), Wicklow (2), Galway (1), Louth/Meath (1), Midlands (1), Wexford (1), Limerick (1), Sligo (1), Tipperary (3) and Kerry (1) SHINE Intensive Independence Training Week Friday 30th June to Thursday 6th July Coolnagreina, Greystones, Co. Wicklow Participants: 12 adults From: Dublin (4), Kildare (3), Midlands (1), Limerick (1), Clare (1), Cork (2) National Sports Day Saturday 22nd September Morton Stadium, Santry This was cancelled as a mark of respect at the untimely passing of Julieanne Bell. Halloweâ&#x20AC;&#x2122;en Social Night Saturday 3rd November The Louis Fitzgerald Hotel, Naas Road, Newlands, Dublin 22 43 participants attended from Dublin, Louth, Meath, Wexford, Galway, Kildare and Clare Adult Getaway Friday 16th November to Monday 19th November Coolnagreina, Greystones, Co. Wicklow Participants: 10 adults From: Dublin, Louth/Meath, Wexford and Sligo

Amongst the most popular activities on the breaks were the driving school, visit to Rathwood and the Chocolate Garden, speed boating, healthy eating talks and music nights â&#x20AC;&#x201C; to name but a few!

There was a lot of positive feedback from participants on SHINE and the other breaks we ran throughout the year. This came through the participant evaluation forms, through cards and letters, and verbally. While always looking at ways to improve, it is good to know that service users are enjoying the services that we offer!

Favourite moment of the year: Very hard to pick one but the impromptu Karaoke session on the Independence week has to be up there!

Education and Training In recent years we have been getting an increasing number of calls from schools and parents around catheterisation. As a response to this need, we have been working closely with Our Lady’s Children’s Hospital, Crumlin to develop ‘Information Sessions on Catheterisation in Schools for SNAs’. The sessions have been positively received. When asked what information they found most useful, one participant stated the information they found most helpful was ‘understanding that you can’t hurt the child and burst the bladder’, another participant said they would be ‘more confident after all the information and visual displays’. Additionally, the Intimate Care Needs document has evolved to include more pertinent information in line with best practice guidelines for child protection. This has been an invaluable resource for schools and parents alike. Along with resource development, SBHI supported schools and families with any issues arising. One example was a recent Workplace Relations Commission (WRC) discrimination case against a secondary school. We worked very closely with the family when the issues first arose, right through to the discrimination case with the WRC. SBHI worked hard to resolve multiple issues in the school from information provision, meetings with the school, letters to the board of management to eventually supporting the move to a more inclusive school and to the inevitable discrimination case with the WRC.

Other schools support included resolving issues with school transport, access to assistive technology; resource hours; and SNA support, information provision on the teaching and learning implications of spina bifida and/or hydrocephalus (SB/H) and general information provision. This year, in collaboration with KIDS services Listowel, we held an information session on the teaching and learning implications of SB/H. We had 22 staff members from 7 schools and 6 therapists from the KIDS service in attendance. Feedback was very positive and it was useful for all schools to learn from one another in terms of their challenges and best practice within their schools. This year we applied for a record number of funding applications for new and innovative education programmes. From those that were successful we will have a new and exciting education programme for 2019â&#x20AC;Ś so watch this space!

We continue to work on updating resources and policies, keeping this as up to date as possible. New educational resources are currently in the process of development. SBHI continue to support Branches with programmes when requested, e.g. the Kildare Branch organised a â&#x20AC;&#x2DC;Mindfulness Programmeâ&#x20AC;&#x2122; through KWETB. SBHI supported them by meeting with the organisers/tutor to discuss the teaching and learning considerations for the SBHI members attending. In 2018 we trained new Peer Supporters in one-to-one support and facilitation skills. The peer supporters had the opportunity to hone their skills at the SHINE weeks. These sessions were very useful and will continue again in 2019. We also organised bereavement sessions following the losses of beloved SBHI service users. It is always very upsetting to have to arrange bereavement sessions as death is traumatic for friends and family, but it is very important to allow people to talk about their grief and loss. Going forward we are hopeful that 2019 will involve more support sessions for members throughout the country. Plans are underway to further develop the Peer Support programme.

Favourite moment of the year: My favourite moment of the year was the feeling of vindication when the family involved in the WRC discrimination case won. It was a true message that children with a disability have a voice and need to be listened to. Parents of children with a disability have the right to expect certain levels of care and basic humanity. This case should never have gone as far as the WRC and should never happen to another child again.

This year, in collaboration with KIDS services Listowel, we held an information session on the teaching and learning implications of SB/H. We had 22 staff members from 7 schools and 6 therapists from the KIDS service in attendance. 15

Resource Centre Clonshaugh

It has been a massively busy, exciting, challenging and productive 2018 in Clonshaugh. Throughout the year service users were motivated, inspired, inspiring, empowered, challenged, supported and in turn supported one another through the good and the tough times. Service users report it to have been a fantastic year, with something new always happening, and are excited for 2019. Another year over in a blur of discovery, training, challenges, fun, social occasions, fundraising and much, much more. Both staff and service users have made many things happen, and the Centre’s service continues to develop and evolve to specifically serve its users in many individualised ways. Ongoing weekly sessions at the Centre include: Sport, Yoga, Cookery, Craft, Art Therapy, Support Session, Occupational Therapy, Bereavement Support, Dance Classes, Morning Exercises and IKarate Work Experience for Service Users: Successful work placements were secured for service users to suit their interests and ability. These included: Local Radio Station, Near F.M., Local Car Garage, Local Office, National Resource Centre. A service user whose biggest wish was to be a Radio Presenter or Newsreader, realised his dream by attending his work experience placement in Near FM 90.3. A local radio station. ‘I absolutely loved it, I can’t wait to go next week’. Five Service Users embarked on an induction course in Near FM which introduced them to the world of media and give them some basic training. Service users were very excited about the prospect of running their own programme.

Team SBHI who represented Ireland in the IKarate World Championships, were interviewed in Near FM studios. Fundraising at the Centre: Another successful year at the fundraising at the Centre. Serviceusers have embraced it and thoroughly enjoy it. The Resource Centre Service Users, staff of the Centre have raised €10,131.45 during 2018. This incentive along with the fundraising incentives is our endeavour to contribute towards the €50,000 deficit cost for running the Centre. Bereavement Support: This support is continuous at the Centre and proving to be affective as individuals are now starting to have good days. ‘I’m starting to have good and bad days, not all bad.’ Safeguarding: As a result of the developing framework within SBHI, the Resource Centre plays a huge role in Safeguarding. Parents/ Guardians/Careers/ also use this service quite frequently.

Service Users embarked on an induction course in Near FM which introduced them to the world of media

Over

â&#x201A;Ź10,000 raised by staff of the Centre

Clonshaugh Events March Music Night Sunday Squad Training Sessions for Ikarate Easter Flower Baskets Hosted Lunch for Swedish Delegates Trip to Wicklow and Avoca, Kilmacanogue Cyber Bullying Course in DCU Art Therapy Life Skills Sessions Ed Sheeran Concert Lord Mayors Reception for Irish Ikarate Athletes Self-Promotion Day “Positive Mental Health” in Clonshaugh Fire Safety Training Bettystown Trip Corkagh Park Fun Run DFI Workshop Meet and Code Event Nickiloveruns Event 18

Morning Exercises: Each morning after signing in all service users take part in a “wake up, exercise session”. Understandably, when first initiated service users did not like the idea of the session, preferring it to a cup of tea/coffee. After persevering with the session and encouraging service users to join it is now a very popular session with service users, requesting to run another session. One member has introduced a dance session which she runs. It is fantastic to see the smile beaming from her face as she teaches the routine, she has choreographed.

“I am so much happier in the mornings now, I love teaching the class and I can’t believe the other members love doing it too”. SHINE: This year was a very big year for two of our service users as it is his first year to attend SHINE and be away from home. They both had an amazing time and can’t wait to return again. Once again in 2018 the service in Clonshaugh adapts to accommodate the much-anticipated and loved SHINE break. The Centre closed from August the 13th – 17th to assist with the double week which was Tiger Lilly week. Four of the Centre service users also attended this week. Since the Centre was closed, the Centre Manager and staff also attended to help make the week the huge success it always is. All reported to have a had an uplifting experience. On This Day: Service users are constantly hitting new goals and achievements. To celebrate these achievements, and to set new goals, a session was facilitated to address how each individual has grown and achieved in many areas. Service users recorded their achievements and goals and placed them in time capsule. This capsule is opened monthly to asses growth and set new goals. This exercise promotes motivation and very positive mental health. Service users really enjoyed this session and wrote countless achievements without prompts or assistance in recall.

Occupational Therapy Service: The service users of the SBHI Resource centre have access to 8 hours of Occupational Therapy per week. This is structured over 2 days, Monday and Thursday. The focus of the Monday service is vocational rehabilitation. The 6 members who attend on this day are offered 1:1 time to enable their skills towards the work environment. This includes activities such as report writing, presentations, online researching and office management. The Monday service users also are afforded more personal time with the Occupational Therapist to establish goals for their mental, physical and social wellbeing as it is a quieter day in the service. The Thursday service is a busier day with 10-11 members attending. Positive mental wellbeing is discussed on Thursday mornings, followed by chair Yoga and relaxation. Thursday sessions are generally focused on planning and organising larger events or projects run by the service. Service users work in groups and are encouraged to contribute their own ideas, to establish their confidence in speaking their opinion without judgment and to actively listen to each other in a safe space. In 2018, the SBHI Resource centre Quality of Life report was also completed which provided clear feedback on the ways the service makes a difference in the areas of health, exercise, diet, relationships, home environment and socializing for the members. Sadly, Occupational Therapist, Emer Duffy will leave SBHI in February to take up a fulltime position. Emer is deeply saddened to leave SBHI. We wish her all the luck in her new role, she will be greatly missed.

Team at the Centre: The Resource Centre team currently consists of two full-time personal assistants, two full-time drivers, the Centre also shares an administrator to the Dublin Branch. IKarate Update: Service users from SBHI Resource Centre flew out (not without difficulty) on Friday 27th April and return to a hero’s welcome on Monday 30th April. SBHI service users were the first wheelchair athletes to represent Ireland in the World Ikarate Championships. Athletes from SBHI met with other Wheelchair athletes from all over the world and made some wonderful new friends. The opening and closing Ceremonies were definitely filled with “Goose bump moments” as SBHI Athletes Proudly joined the International line up in their Green Jerseys with Team SBHI emblazoned across the back.

Without the support of SBHI Resource Centre this dream would not have been realised. The next World Karate Championship is being held in Ireland, in April 2019. This is a fantastic opportunity to introduce the sport to many more of our service users.

Communications

2018 was another busy year for Communications at SBHI with some great successes. This being SBHIâ&#x20AC;&#x2122;s 50th anniversary year, many steps were taken to highlight and celebrate this landmark occasion. A 50th anniversary logo was designed, and special headed paper was ordered, and a new pull up and banner were commissioned which saw extensive use throughout the year. Much work was done on updating and modernising several facets of the communications portfolio. This included sourcing funding to redesign SBHI information leaflets and working on an updated website which will launch during 2019. The launch of an e-newsletter is also imminent.

4,200 ‘likes’ on Facebook, an increase of almost 1,000 on 2017.

One of the most important projects undertaken this year was the SBHI Health Survey. Many thanks to our service users for completing the survey, this data and feedback will help us determine the needs of the SBHI community so we can better serve everyone into the future. This work was only made possible with support from the Hospital Saturday Fund, we acknowledge their invaluable support in making this possible. The annual conference was a particular success, presenting a great opportunity to celebrate our 50th anniversary. The line-up of panels and speakers were roundly praised for their quality and relevance to our service users and member’s needs. This year was the first that SBHI became involved with National Carer’s Week. We conducted a social media campaign, as well as radio interviews to highlight the important role that carers play in the lives of our service users. The third annual Spina Bifida and Hydrocephalus Awareness Week took place between the 21st and 28th October. This was co-ordinated with the International Federation for Spina Bifida and Hydrocephalus (IF), using the theme #mySBHlife. We shared members stories on our website, using social media to highlight each story. This was accompanied by press releases to national media outlets and regional media in Branch areas. As well as this, radio interviews were secured, providing a valuable opportunity to highlight the conditions and the needs of our members.

The National Lottery Good Causes Awards provided a great boost of publicity to SBHI.

As well as our Clonshaugh Resource Centre being featured on Ireland AM, CEO Tom Scott was interviewed on the show the morning after the awards ceremony. This had a great impact on raising awareness of SB/H in Ireland. We officially launched Shane Finn’s American Ultra with a spectacular video posted to Facebook on Christmas Day. Preparations have been underway since the summer and we cannot wait to see what this amazing undertaking will hold in store in 2019. Our audience on social media has been growing steadily throughout the year. We now have over 4,200 ‘likes’ on Facebook, an increase of almost 1,000 on 2017. Facebook remains an important means for service users and members to communicate with us and us to communicate with our members. This year saw a number of incredibly successful engagements with our online audience. This included the launch of the ‘Fight of Our Lives’ campaign video at our annual golf classic. The campaign video was very successful, amassing over 20,000 views. At the end of the year our Communications Officer, Aideen Sutton, left the organisation and we are currently recruiting a Communications Co-Ordinator.

Favourite moment of the year: The ‘Fight of Our Lives’ video launch. 21

Fundraising

Fundraising in SBHI saw several important developments in 2018. As a result of a need identified in 2017, SBHI undertook to recruit a full-time member of staff dedicated to fundraising. In February we welcomed a new Fundraising Officer, Cian Dikker, to our team. We launched the 50 for 50 Challenge with the goal of raising €50,000 in our 50th anniversary year to compensate for the reduction in National Lottery Funding. Over 30 people took up the challenge and raised thousands of euro for the organisation. A grant calendar was drawn up and an initial eight applications were successful, securing over €40,000 in funding. Six applications are awaiting a response. Successful applications included funding of over €20,000 from the Early Childhood Ireland Pyjama Day Fund, administered by the Community Foundation, which has allowed SBHI to launch a ground-breaking new programme for our youngest service users. As National Winners of the Health category at the National Lottery Good Causes Awards, SBHI took home a cheque for €10,000. While our application to the Ireland Funds was unsuccessful, it did result in SBHI being introduced to a major charitable foundation who have pledged support SBHI by providing €50,000 per year for three years. 22

Funding from the Ulster Bank Skills and Opportunities Fund will allow SBHI to launch a financial literacy course in spring 2019. Support from several Local Community Development Committees through the Community Enhancement Programme has allowed us to upgrade the IT equipment available to our FSW team. As well as this, our annual National Lottery Funds applications secured €65,000 for various respite and family support services. A successful application by Katie Dunphy and Katy Walsh to the Pobal Dormant Accounts Fund has resulted in a grant of almost €200,000 for our new SHARE project. At the third year of asking SBHI successfully campaigned to be one of Dublin Airport Authority’s Charities of the Year for 2019. Every year DAA staff vote to choose which charities are supported and it is a privilege to be chosen for 2019. Many thanks to Declan Murray who works in the Airport Search Unit and whose son Ben is one of our members for his work on the campaign.

Several successful fundraising events were organised in 2018. Our flagship event, the annual Packie Bonner Golf Classic, was a resounding success, raising over €22,000. Stephen Martin continued his support of SBHI this year, organising several very successful events. This included the inaugural Corkagh Park Family Fun Run which saw 216 participants raise over €2,500. TP Waters Kildare, who were a great support to Shane Finn during 24M24D, launched the Ambition Run on the 16th September. 194 participants were registered and the event raised over €4,600!

A cheque for

€10,000

was awarded for winning the Health category at the National Lottery Good Causes Awards A grant of almost

€200,000

has been awarded for our new SHARE project from the Pobal Dormant Accounts Fund Over SBHI Ambassador Packie Bonner completes his round at the annual Packie Bonner Golf Classic in support of SBHI

€22,000

was raised at the annual Packie Bonner Golf Classic 23

Many thanks to SBHI Chairperson Peter Landy for organising his annual Country Music Night, this year the event raised over €3,000! The Sporting Proud Triathlon was a great opportunity to raise funds for SBHI, recruiting participants proved very challenging however despite this €3,100 was raised, many thanks to Wheelchair Cars Ireland for their contribution to this sum, and for all their ongoing support. Kildare Town Running and Tri Club chose to support SBHI as part of their annual 12Ks of Christmas, this raised €1,000.30, supporters took part in the Vhi Women’s Mini Marathon for SBHI, raising over €6,200. Nine supporters took on the Dublin Marathon, raising over €6,000. This year, Facebook rolled out fundraising on its social media platform. This presented a completely new and unexpected source of funds. Overall, our members and supporters have been very successful, raising over €10,000 in the year.

We look forward to seeing all our loyal supporters again next year!

Over

€3,000

raised at annual Country Music Night

supporters took on the Dublin Marathon raising over

€6,000

Over

€10,000

raised via Facebook fundraising

Favourite moment of the year: Winning our category at the National Lottery Good Causes Awards! 25

Operations

2018 was a year full of change and many positive developments at the National Resource Centre. While in many ways 2018 was a year of transition, we hope that in 2019 we will reap the rewards of the time and effort invested. There were no changes to our core HSE funding for 2018 and SBHI continues without pay restoration measures from cuts made during the recession and no increase in funding to meet the true cost of our services. We have streamlined all Branch bank accounts to one provider. Many thanks to the Branches for their support and cooperation. We are continuing to improve our accounting and reporting practices to ensure the highest levels of professionalism in this key area of our work. Our financial statements are SORP compliant as recommended by the Charities Regulator.

Through the support of the Lord Taverners we added a new bus to our fleet. We successfully applied for a tax exemption for the bus and also secured a significant reduction in the cost of insuring our transport fleet. Many thanks to Karen Malone for all her work on this. We have secured improved contracts with suppliers, which have reduced our annual operating costs. Unfortunately, the start of 2018 saw the suspension of the Dublin Branch. Staff in the National Resource Centre and in our Resource Centre in Clonshaugh worked hard to ensure that commitments for collections were honoured in order to support former Branch members until the end of the year. Thankfully, these collections were very successful and enabled the costs of Dublin Members SHINE breaks to be covered.

In February Cian Dikker joined our team as Fundraising Officer through the 2into3 NotFor-Profit Graduate Programme. This greatly enhanced our capacity to engage our supporters and seek funding from a variety of sources. While Cian’s contract comes to an end at the beginning of 2019, fundraising forms a valuable part of the work of the organisation. For 2019 SBHI has committed to recruiting a fundraising professional to further develop this area.

Our Communications Officer, Aideen Sutton, left the team in November. We thank Aideen for her service to SBHI and we are currently recruiting a new Communications Co-Ordinator.

To prepare for GDPR legislation coming into effect in May of this year, we have updated all our filing systems. In order to ensure information is stored in a GDPR compliant manner, SBHI undertook a data mapping project with IT experts, Digigrow. Much work was undertaken on updating the SBHI database, ensuring contact details and other pertinent information is correct. In advance of the legislation coming into effect, all members were sent information outlining the changes and their impact, as well as opt-in forms so we can continue to communicate with them.

At the end of 2018 we launched our new inhouse CRM system to manage our database of members and supporters. Member services are the priority in this process, and we will soon be able to roll out a new user-friendly way for everyone to renew their membership for 2019.

Due to GDPR legislation coming into effect, it was necessary to update the employee handbook. We took this opportunity to completely update the handbook as well as all HR policies and procedures. This included the introduction of a new sick leave and paternity leave policy. May also saw a full staff First Aid Training Day, which was a great success. Anne McManus joined the team in Clonshaugh during the summer to cover carer’s leave taken by Kathryn Caulfield. Kathryn re-joined the team in September, and we thank Anne for her support.

A lot of work was undertaken in the last quarter of 2018 to secure collection permits across all regions for 2019. We are looking forward to another busy schedule of church gate and shopping centre collections in 2019.

Thank you to all our supporters who ensure that our work can continue – your generosity really does make a huge difference!

Through the support of the Lord Taverners we added a new bus to our fleet.

Favourite moment of the year: Winning the Health and Wellbeing Category of the National Lottery Good Causes Awards. 27

Structure, Governance and Management Governance at SBHI The Board of Directors continue to develop the governance standard at SBHI and 2018 saw the introduction of the new Constitution which was ratified by the members at the 2018 AGM. The new Governance Handbook was also introduced later in the year. We extend our sincere thanks to the staff in Dechert who oversaw this process with their legal expertise on a pro bono basis for SBHI. The Board met regularly throughout the year with ten Board meetings, four National Executive Committee (NEC) meetings, and the Annual Conference in May. The Conference was another great success and the 50th Anniversary of the organisation was celebrated by all those present. Working with the CEO, the SBHI management team, and the highly dedicated SBHI staff, the Board continues to support the development of the service offered by SBHI in all areas via the 2017-2020 strategic and operational plans. This includes relevant policy and procedures and sound financial planning through a thorough budget and relevant reporting systems.

2018 saw significant investment in funding and fundraising streams and this resulted in the securing of several major grants and opportunities which are crucial to the long-term success of the organisation. The Board acknowledges the work of the SBHI Branches who work tirelessly as volunteers in their relevant areas and enhance the experience of our members across the country, this contribution is held with the upmost admiration for all those involved. 28

The SBHI Board • • • • •

Chairperson: Peter Landy Vice-Chairperson: John Henry Treasurer: Gerry Bell Head of SBHI Governance: Úna Keightley Membership Development Officer: Jane McDermott (May 2018 onwards)

• Company Secretary: Fiach McDonagh • CEO: Tom Scott Note: The CEO is not a member of the Board. The CEO is invited to attend and report at Board meetings. The SBHI Board met ten times during 2018’

Board Tenure In keeping with best governance practice, Board members are elected at the SBHI AGM, unless appointed to a Board vacancy during the year between annual general meetings. Board members serve a period of three years and three directors must resign before each AGM, indicating their intention to run for re-election if eligible.

Board Member profile • Chairperson: Peter Landy is the parent of a member who lives with spina bifida and hydrocephalus and runs his own business, Peter Landy & Sons Ltd. • Vice-Chairperson: John Henry lives with spina bifida and is company secretary / Director of family owned construction company T.H. Contractors Ltd. • Treasurer: Gerry Bell’s daughter lived with spina bifida and hydrocephalus until her untimely passing in 2018. Gerry works for Dublin County Council. • Head of SBHI Governance: Úna Keightley has three young children one of whom is living with spina bifida. Úna works as a Radiation Therapist and has a range of qualifications in oncology, healthcare management, and clinical research. • Membership Development Officer: Jane McDermott lives with spina bifida and works for the Revenue Commissioners as a Clerical Officer. Conflicts of interest Conflicts of interest within the Board are regulated in a register. The register is available at every Board meeting. Recruitment of Board members Recruitment of Board members takes place through the SBHI network and third-party services such as Boardmatch.

Board Committees

SBHI decision making processes The SBHI Board of Directors have ultimate responsibility for the organisation, this is delegated to the CEO to lead the company on a day-to-day basis.

Finance Committee The Finance Committee membership consists of the Chairperson, Treasurer, Company Secretary, CEO and the appointed SBHI external accountant. The Finance Committee meets on a quarterly basis.

SBHI Risk Management The Board and management of SBHI manage risk through a risk register, regular reviews of risks in all service departments, and assessments via the company insurance provider.

SBHI Remuneration and performance management As a Section 39 funded agency, SBHI attempts to remunerate staff accordingly using HSE pay scales, however this is not always possible due to funding restrictions. No staff member received bonuses or incentives of any other kind. The CEO of SBHI would sit on the CEO Band SC1 Social Care HSE pay scale. This pay scale ranges from €67,135 to €80,475. The CEO of SBHI does not register on the beginning of this pay scale. For staff funded by other grants and funding sources, pay is benchmarked according the relevant sector. All Board Directors are volunteers and receive no remuneration for their service. Directors are entitled to claim out of pocket expenses as per the SBHI Expense Policy.

Accounting records The measures taken by the Directors to secure compliance with the requirements of Sections 281 to 285 of the Companies Act 2014, with regard to the keeping of accounting records, are the implementation of necessary policies and procedures for recording transactions, employment of appropriately qualified accounting personnel with appropriate expertise, the provision of adequate resources to the financial function and the maintenance of computerised accounting systems. The Company’s accounting records are maintained at the Company’s registered office at: SBHI, National Resource Centre, Old Nangor Road, Clondalkin, Dublin D22 W5C1. Statement on audit information In the case of each of the persons who are Directors at the time this report is approved in accordance with Section 332 of the Companies Act 2014: so far as each Director is aware, there is no relevant audit information of which the Company’s statutory auditors are unaware, and each Director has taken all of the steps that he or she ought to have taken as a Director in order to make himself or herself aware of any relevant audit information and to establish that the Company’s statutory auditors are aware of that information.

Finance Section Directors’ Report and Financial Statements for the year ended 31 December 2018

Contents Reference and Administrative Information Directors’ Annual Report Directors’ Responsibilities Statement Independent Auditor’s Report Statement of Financial Activities Balance Sheet Cash Flow Statement Notes to the Financial Statements Supplementary Information relating to the Financial Statements

Summary

Income HSE Other public funds Activities for raising funds All other income

Expenditure 58% 16% 24% 2%

Member’s Benefit 34% Support and Governance costs 59% Promotion and Marketing 5% Depreciation 2%

Principal Risks and Uncertainties The directors have not identified any specific risks or uncertainties affecting the company, other than the prevailing economic conditions in Ireland. The company receives 80% of its funding though grants, primarily from the HSE, with the balance from fundraising and donations. The company is only exposed to those risks which affect the economy as a whole and as such are outside its control. The costs of running the business are consistent with prior years and are expected to remain constant in the future. The directors feel that with the experience and knowledge they have of the company, that they are well placed to cope with any circumstance which may arise in the future, and have sufficient resources in place to ensure the company will continue as a going concern. Internal control risks are minimised by the implementation of procedures tor authorisation for all transactions and projects, procedures are in place to ensure compliance with health and safety of staff, volunteers and clients. Financial Review The results for the year are set out on page 35. The charity with the aid of sound financial management and the support of both its staff and volunteers generated a very positive financial outcome for the period. The retained surplus for the financial year amounted to €1,642 (2017: €63,183) and this was transferred to reserves at the end of the year. The principal source of funding is HSE Service Level Agreements and public grants (75%) and with Fundraising and Donations contributing 20% of the income. At the end of the year the company had net assets of €752,100 (2017: €750,458). Structure, Governance and Management The organisation is a charitable company limited by guarantee. The company does not have a share capital and consequently the liability of members is limited, subject to an undertaking by each member to contribute to the net assets or liabilities of the company on winding up such amounts as may be required not exceeding two euro.

The charity was established under a Constitution, which established the objects and powers of the charitable company and is governed and managed by its Board of Directors. The board meet on a quarterly basis and are responsible for the strategic direction of the charity. At these meetings the board of directors are provided with key performance and risk indicators. The charity is run on a day to day basis by the chief executive officer. There is a clear division of responsibility at the company with the board retaining control over major decisions. Board members do not receive any remuneration in respect of their services to the charity. Auditors The auditors, AK Accounting Ltd, have indicated their willingness to continue in office in accordance with the provisions of Section 383(2) of the Companies Act, 2014. Statement on Relevant Audit Information We, the directors of the company who held office at the date of approval of these Financial Statements as set out above each confirm, so far as we are aware, that: - There is no relevant audit information of which the statutory auditors are unaware.; and - The directors have taken all steps that they ought to have taken to make themselves aware of any relevant audit information and they have established that the statutory auditors are aware of that information. The auditors, AK Accounting Ltd., have indicated their willingness to continue in office in accordance with the provisions of Section 380 of the Companies Act 2014. Accounting Records To ensure that adequate accounting records are kept in accordance with Sections 281 to 285 of the Companies Act 2014, the directors have employed appropriately qualified accounting personnel and have maintained appropriate computerised accounting systems. The accounting records are located at the company’s office at Old Nangor Road, Clondalkin, Dublin 22. Mr. Gerry Bell Director 30th April 2019 Mr. Peter Landy Director 30th April 2019

DIRECTORS’ RESPONSIBILITIES STATEMENT The directors are responsible for preparing the financial statements in accordance with applicable Irish law and Generally Accepted Accounting Practice in Ireland including the accounting standards issued by the Financial Reporting Council. Company law requires the directors to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the net income or expenditure of the charity for that year. In preparing these financial statements the directors are required to: - select suitable accounting policies and apply them consistently; - make judgements and estimates that are reasonable and prudent; - state whether the Charities SOAP (effective January 2015) has been followed; - prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in operation. The directors confirm that they have complied with the above requirements in preparing the financial statements. The directors are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements are prepared in accordance with accounting standards generally accepted in Ireland and with Irish Statute comprising the Companies Act 2014, and all Regulations to be construed as one with those Acts. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

In so far as the directors are aware: - there is no relevant audit information (information needed by the charity’s auditor in connection with preparing the auditor’s report) of which the charity’s auditor is unaware, and - the directors have taken all the steps that they ought to have taken to make themselves aware of any relevant audit information and to establish that the charity’s auditor is aware of that information. Mr. Gerry Bell Director 30th April 2019 Mr. Peter Landy Director 30th April 2019 INDEPENDENT AUDITOR’S REPORT We have audited the financial statements of National Association of Spina Bifida and Hydrocephalus Ireland CLG for the year ended 31 December 2018 which comprise the Statement of Financial Activities (incorporating an Income and Expenditure Account), the Balance Sheet, the Cash Flow Statement, the Accounting Policies and the related notes. These financial statements have been prepared under the accounting policies set out therein. This report is made solely to the company’s members, as a body, in accordance with Section 391 of the Companies Act 2014. Our audit work has been undertaken so that we might state to the company’s members those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the company and the company’s members as a body, for our audit work, for this report, or for the opinions we have formed.

Respective responsibilities of directors and auditors As described in the Statement of Directors’ Responsibilities, the company’s directors are responsible for the preparation of the financial statements in accordance with applicable law and the accounting standards issued by the Financial Reporting Council (Generally Accepted Accounting Practice in Ireland). Our responsibility is to audit the financial statements in accordance with relevant legal and regulatory requirements and International Standards on Auditing (UK and Ireland).

Basis of opinion We conducted our audit in accordance with International Standards on Auditing (UK and Ireland) issued by the Auditing Practices Board. An audit includes examination, on a test basis, of evidence relevant to the amounts and disclosures in the financial statements. It also includes an assessment of the significant estimates and judgements made by the directors in the preparation of the financial statements, and of whether the accounting policies are appropriate to the company’s circumstances, consistently applied and adequately disclosed.

We report to you our opinion as to whether the financial statements give a true and fair view, in accordance with Generally Accepted Accounting Practice in Ireland, and are properly prepared in accordance with the Companies Act 2014. We state whether we have obtained all the information and explanations we consider necessary for the purposes of our audit and whether the financial statements are in agreement with the books of account.

We planned and performed our audit so as to obtain all the information and explanations which we considered necessary in order to provide us with sufficient evidence to give reasonable assurance that the financial statements are free from material misstatement, whether caused by fraud or other irregularity or error.

We also report to you our opinion as to: - whether the company has kept proper books of account; and - whether the Directors’ Annual Report is consistent with the financial statements. We report to the members if, in our opinion, any information specified by law regarding directors’ remuneration and directors’ transactions is not given and, where practicable, include such information in our report. We read the Directors’ Annual Report and consider the implications for our report if we become aware of any apparent misstatement within it. Scope of the audit of the financial statements An audit involves obtaining evidence about the amounts and disclosures in the financial statements sufficient to give reasonable assurance that the financial statements are free from material misstatement, whether caused by fraud or error. This includes an assessment of: whether the accounting policies are appropriate to the company’s circumstances and have been consistently applied and adequately disclosed; the reasonableness of significant accounting estimates made by the directors; and the overall presentation of the financial statements. In addition, we read all the financial and non-financial information in the Directors’ Annual Report to identify material inconsistencies with the audited financial statements. If we become aware of any apparent material misstatements or inconsistencies we consider the implications for our report.

In forming our opinion we also evaluated the overall adequacy of the presentation of information in the financial statements. Opinion In our opinion the financial statements: - give a true and fair view, in accordance with Generally Accepted Accounting Practice in Ireland, of the state of affairs of the company as at 31 December 2018 and of its incoming resources and application of resources, including its income and expenditure, for the year then ended; and - have been properly prepared in accordance with the requirements of the Companies Act 2014 We have obtained all the information and explanations that we consider necessary for the purposes of our audit. In our opinion proper books of account have been kept by the company. The financial statements are in agreement with the books of account. In our opinion the information given in the Directors’ Annual Report is consistent with the financial statements. Matters on which we are required to report by exception We have nothing to report in respect of the provisions in the Companies Act 2014 which require us to report to you if, in our opinion, the disclosures of directors’ remuneration and transactions specified by Sections 305 to 312 of the Act are not made. Alan Keane for and on behalf of AK ACCOUNTING Accountants and Registered Auditor Unit H3 Centrepoint Business Park Oak Road Dublin 12 Date: 30th April 2019

Statement of financial activities Total

Total

2018

2017

€

75,767

95,196

HSE Service Level Agreements

775,434

751,396

Fundraising and Donations

237,648

349,534

Sundry income

28,331

35,742

Other public grants

210,611

214,853

Total incoming resources

341,746

986,045

1,327,791 1,446,721

341,746

986,045

1,327,791 1,446,721

Programme costs

403,978

604,560

1,008,538 754,764

Support costs

63,502

254,109

317,611

467,480

858,669

1,326,149 1,383,538

Gross transfers between funds

Surplus/(deficit) for the year

(125,734)

127,376

1,642

63,183

Net movement in funds for the year

(125,734)

127,376

1,642

63,183

Balances brought forward at 1 January 2018

306,139

444,319

750,458

687,275

Balances carried forward at 31 December 2018

180,405

571,695

752,100

750,458

Notes

Unrestricted Funds 2018

Restricted Funds 2018

€

Incoming Resources Generated funds: Activities for generating funds Churchgate collections Charitable activities:

Resources Expended Net Incoming Resources

available for charitable application Resources Expended on Charitable Activities

Total Resources Expended

Reconciliation of funds

628,774

Balance sheet Total 2018

Total 2017

Notes

€

149,866

172,019

Debtors

10,890

26,349

Investments

386

748,397

775,977

759,673

802,712

(131,557)

(185,451)

Net Current Assets

628,116

617,261

Total Assets less Current Liabilities

777,982

789,280

(25,882)

(38,822)

Net Assets

752,100

750,458

Funds

Restricted trust funds

571,695

444,319

Fixed Assets Tangible assets Current Assets

Cash at bank and in hand

Creditors: Amounts falling due within one year

Grants receivable

General fund (unrestricted) Total funds

180,405

306,139

752,100

750,458

Approved by the board and authorised for issue on 30th April 2019 and signed on its behalf by Mr. Gerry Bell Mr. Peter Landy Director Director

Cash flow statement 2018

2017

Notes

€

Net cash outflow from operating activities

(26,645)

93,488

Returns on investments and servicing of finance

4,018

Capital expenditure

(1,660)

(41,385)

Financing

Movement in cash in the year

(28,305)

56,121

Reconciliation of net cash flow to movement in net debt (Note 20)

628,116

617,261

Movement in cash in the year

(28,305)

56,121

780,559

724,438

752,254

780,559

Net funds at 1 January 2018 Net funds at 31 December 2018

1. Accounting policies Incoming Resources Voluntary income or capital is included in the Statement of Financial Activities when the company is legally entitled to it, its financial value can be quantified with reasonable certainty and there is reasonable certainty of its ultimate receipt. Entitlement to legacies is considered established when the company has been notified of a distribution to be made by the executors. Income received in advance of due performance under a contract is accounted for as deferred income until earned. Grants for activities are recognised as income when the related conditions for legal entitlement have been met. All other income is accounted for on an accruals basis. Resources Expended All resources expended are accounted for on an accruals basis. Charitable activities include costs of services and grants, support costs and depreciation on related assets. Costs of generating funds similarly include fundraising activities. Non-staff costs not attributed to one category of activity are allocated or apportioned pro-rata to the staffing of the relevant service. Finance, HR, IT and administrative staff costs are directly attributable to individual activities by objective. Governance costs are those associated with constitutional and statutory requirements. Debtors and creditors receivable / payable within one year Debtors and creditors with no stated interest rate and receivable or payable within one year are recorded at transaction price. Any losses arising from impairment are recognised in the profit and loss account in other administrative expenses. Cash and cash equivalents Cash and cash equivalents include cash on hand, current accounts and demand deposits. Bank overdrafts are shown within borrowings in current liabilities on the statement of financial position.

Tangible fixed assets and depreciation Tangible fixed assets are stated at cost or at valuation, less accumulated depreciation. The charge to depreciation is calculated to write off the original cost or valuation of tangible fixed assets, less their estimated residual value, over their expected useful lives as follows: Land and buildings freehold Plant and machinery Fixtures, fittings and equipment Motor vehicles Premises improvement

2% Straight line 15% Straight line 15% Straight line 20% Straight line 10% Straight line

Investments Current asset investments are stated at the lower of cost and net realisable value. Taxation No charge to current or deferred taxation arises as the charity has been granted charitable status under Sections 207 and 208 of the Taxes Consolidation Act 1997. The preparation of these financial statements requires management to make judgements, estimates and assumptions that affect the application of policies and reported amounts of assets and liabilities, income and expenses. Judgements and estimates are continually evaluated and are based on historical experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances. Providing for doubtful debts. The company makes an estimate on the recoverable value of trade and other debtors. The company uses estimates based on historical experience in determining the level of debts, which the company believes will not be collected.

2. Significant accounting judgements and key sources of estimation uncertainty The preparation of these financial statements requires management to make judgements, estimates and assumptions that affect the application of policies and reported amounts of assets and liabilities, income and expenses. Judgements and estimates are continually evaluated and are based on historical experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances. Providing for doubtful debts. The company makes an estimate on the recoverable value of trade and other debtors. The company uses estimates based on historical experience in determining the level of debts, which the company believes will not be collected.

3. Net incoming resources 2018

2017

€

Depreciation of tangible assets

24,915

23,813

Amortisation of grants receivable

(12,940)

2018

2017

€

Amortisation of capital grants received

12,940

Bank interest

4,018

12,940

16,958

Net Incoming Resources are stated after charging/(crediting):

4. Investment and other income

5. Analysis of resources expended Programme Costs 2018

Support Costs 2018

Total

2018

2017

€

Members’ benefits

445,948

341,800

Promotion and marketing

69,885

Depreciation

24,915

540,748

341,800

Support costs:

453,939

1,041,738

Governance costs:

13,851

317,611

331,462

Totals

1,008,538

317,611

1,326,149

1,383,538

Other costs

6. Analysis of resources expended and related income for charitable activities Programme Costs 2018

Support Costs 2018

Total

2018

2017

€

(1,008,538 )

(317,611)

(1,326,149)

(1,383,538)

Charitable activities: Direct and other costs Costs

7. Analysis of support and governance costs Support

2018 €

Salaries, wages and related costs

388,380

General office

58,919

Audit fees

6,640 453,939

Governance

2018 €

Salaries & wages

237,641

General office

63,108

Audit fees

1,909

Accountancy services

4,346

Legal and professional

24,458 331,462

Total

785,401

8. Employees and remuneration Number of employees The average number of persons employed (including executive directors) during the year was as follows: 2018 Number

2017 Number

Administration

Members benefit

Clonshaugh Centre

The staff costs comprise:

2018 €

2017 €

Wages and salaries

692,143

665,766

Social security costs

77,282

70,046

769,425

735,812

9. Tangible fixed assets Land and buildings freehold

Plant and machinery

Fixtures, fittings and equipment

Motor vehicles

Premises Total improvement

€

At 1 January 2018

115,382

123,980

69,734

149,994

71,594

530,684

Additions

1,660

At 31 December 2018

115,382

123,980

69,734

151,654

71,594

532,344

At 1 January 2018

16,156

123,980

69,734

77,202

71,593

358,665

Charge for the year

2,308

21,505

23,813

At 31 December 2018

18,464

123,980

69,734

98,707

71,593

382,478

At 31 December 2018

96,918

52,947

149,866

At 31 December 2017

99,226

72,792

172,019

Cost

Depreciation

Net book value

9.1 Tangible fixed assets prior year Land and buildings freehold

Plant and machinery

Fixtures, fittings and equipment

Motor vehicles

Premises Total improvement

€

At 1 January 2017

115,382

123,980

69,734

108,609

71,594

530,684

Additions

41,385

1,660

At 31 December 2017

115,382

123,980

69,734

149,994

71,594

532,344

At 1 January 2017

13,848

123,980

69,734

55,697

71,593

334,852

Charge for the year

2,308

21,505

23,813

At 31 December 2017

16,156

123,980

69,734

77,202

71,593

358,665

At 31 December 2017

99,226

52,947

172,019

At 31 December 2016

101,534

52,912

154,447

Cost

Depreciation

Net book value

10. Debtors

Trade debtors Amounts owed by related parties Prepayments and accrued income

2018

2017

€

753

12,412

5,262

4,875

8,675

10,890

26,349

2018

2017

€

386

11. Current asset investments

Prize Bonds

12. Creditors Amounts falling due within one year

2018

2017

€

Bank overdrafts

1,791

1,066

Payments received on account

74,547

95,147

Trade creditors

34,311

55,164

Taxation and social security costs (Note 13)

15,499

19,394

Other creditors

(336)

(120)

Accruals

5,745

14,800

131,557

185,451

2018

2017

€

15,499

19,394

13. Taxation and social security

Creditors: PAYE / PRSI

14. Grants receivable 2018 Capital grants received and receivable At 1 January 2018 Amortisation At 1 January 2018

2017

€

64,700

(25,878)

(12,938)

Amortised in year

(12,940)

At 31 December 2018

(38,818)

(25,878)

At 31 December 2018

25,882

38,822

At 1 January 2018

38,822

51,762

Net book value

15. Analysis of net assets by fund Fixed assets – charity use

Current assets

Current liabilities

Long-term deferred income

Total

€

HSE funding

280,406

Other public grants

83,709

176,037

7,400

(38,822)

228,324

National Lottery grants

62,965

83,709

519,408

7,400

(38,822)

571,695

66,155

238,477

(137,167)

12,940

180,405

149,864

757,885

(129,767)

(25,882)

752,100

Restricted income

Fundraising and donations

16. Analysis of movements on funds Balance 1 January 2018

Incoming resources

Resources expended

Balance 31 December 2018

€

HSE funding

268,173

775,438

(763,205)

280,406

Other public grants

176,143

52,181

228,324

National Lottery grants

158,430

(95,464)

62,965

444,316

986,049

(858,670)

571,695

306,139

341,746

(467,480)

180,405

750,455

1,327,795

(1,326,150)

752,100

Restricted income

Unrestricted income Fundraising and donations

17. Status The company is limited by guarantee not having a share capital. The liability of the members is limited. Every member of the company undertakes to contribute to the assets of the company in the event of its being wound up while they are members, or within one year thereafter, for the payment of the debts and liabilities of the company contracted before they ceased to be members, and the costs, charges and expenses of winding up, and for the adjustment of the rights of the contributors among themselves, such amount as may be required, not exceeding €1.

18. Related party transactions The Irish Association for Spina Bifida and Hydrocephalus Limited is a dormant company connected to The National Association for Spina Bifida and Hydrocephalus Ireland Limited with common director. The National Association for Spina Bifida and Hydrocephalus Ireland Limited has been granted a right of access to leasehold land which is under the ownership of a related company Irish Association for Spina Bifida and Hydrocephalus Limited. The company have built their offices on this property. There were no transactions between the companies in 2018. The Irish Association for Spina Bifida and Hydrocephalus Limited owes the company for payments made on its behalf in relation to the leasehold land 2018: €5,262 (2017: €5,262)

19. Post-balance sheet events There have been no significant events affecting the Charity since the year-end.

20. Cash flow statement 20.1 Reconciliation of operating net movement in funds to net cash inflow from operating activities 2018 €

Net movement in funds Depreciation Movement in debtors Movement in creditors Amortisation of capital grants received Net cash inflow from operating activities

1,642

24,915

15,459

(55,721)

2017 € 59,166 23,813 (11,046) 34,495

(12,940)

(26,645)

93,488

2018

2017

20.2 Cash flow statement €

€

4,018

(1,660)

(41,385)

Returns on investment and servicing of finance Interest received Capital expenditure Payments to acquire tangible assets

20.3 Analysis of changes in net funds Opening balance

Cash flows

Closing balance

€

Cash at bank and in hand

775,977

(27,580)

748,397

Overdrafts

(1,066)

(725)

(1,791)

774,911

(28,305)

746,606

Liquid resources

386

Debt due within one year

5,262

Net funds

780,559

(28,305)

752,254

2018

2017

21. Financial instruments € Trade debtors Other debtors Cash and cash equivalents Trade creditors Other creditors

753

10,137

746,606 34,311

€ 12,412 13,937 774,911 55,164

95,455

130,287

887,262

986,711

22. Approval of financial statements The financial statements were approved and authorised for issue by the Board of Directors on 30th April 2019

Spina Bifida Hydrocephalus Ireland (SBHI), National Resource Centre, Old Nangor Road, Clondalkin, Dublin D22 W5C1 T: 01 457 2329 • E: info@sbhi.ie • W: www.sbhi.ie Reg. Charity No. 20009366