Our Journey So Far
In the 50 years since the Down’s Syndrome Association of Ireland was formed, many, many people, volunteers and employees, parents and friends, have all given generously of their time and effort to make the organisation what it is today. Unfortunately, we can’t name every individual, but we can describe the major themes and changes in each decade as the organisation expanded and gained momentum, driving social change, giving a voice to adults with Down syndrome and ensuring that no new family who has a child with Down syndrome needs to feel isolated and alone.
The Seventies
1971 the Down Syndrome Association, which later became Down Syndrome Ireland, was formed as a parent support organisation, with parent members drawn from all 26 counties.
In 1973, the Mid-Western Branch was formed, covering Clare, Limerick and Tipperary. This was the first branch outside Dublin. It was followed in 1975 by Sligo, and in 1978, the Munster counties decided to form their own association, with branches springing up all around the country in the 70s and 80s.
The push to start a national organisation of parents came from Lal Freeman, whose daughter Grace was born in November 1959. Following Grace’s tragic death in 1967, she worked with others to form an association of families to provide friendship and support to parents who had a child with Down syndrome. Initially, the committee contacted all maternity hospitals asking for parents to be given information about the association in order to bring families together to learn about the best way to help their new baby with Down syndrome. In 1978, the first Parents Advice Book was written by Mary Lowrey and distributed to maternity hospitals around the country.
This principle of parent-to-parent support that was established at the outset is still a primary focus of Down Syndrome Ireland, both within the branches and through the ParentLink programme.
Parents who had a child with Down syndrome had very limited support at this time.
The high incidence of cardiac problems (around 50% of babies with DS have heart issues) meant that life expectancy was low. There was no real expectation that children would attend education. Where education was available, it was through disability services, who developed special schools to cater for some children, while others were in care environments or at home.
Annette O’Neill, the longest serving employee of DSI, remembers her family feeling very lucky that her brother was offered a place with a disability service when he was 5 years old – there were no guarantees, no right to education or care.
The Eighties
As the organisation evolved, the focus expanded to include lobbying about the rights of people with Down syndrome, and the battle continues to ensure that everyone receives the services and supports they need to reach their potential and have their rights upheld. Integrated education became the chief topic pursued by the National executive on behalf of the branches.
In the early 80’s, DSI successfully highlighted the additional medical needs of people with Down Syndrome and people were granted discretionary medical cards. However, in the following decades, people with Down syndrome were called to interview every year to confirm that they still had additional medical needs, or more recently asked to fill in a form to confirm that their circumstances were unchanged.
Education in the 1980s was still largely confined to special schools run by disability services, and still not guaranteed.
In the mid 1980’s, the first 10 children supported by Down Syndrome Ireland were enrolled into mainstream primary schools and DSI funded a peripatetic teacher to support them. She travelled between schools by bike, visiting two schools a day, so that each of the 10 children were seen once a week. Branches around the country began to use this model, funding additional teachers to support students in mainstream primary schools around the country. The idea that children with Down syndrome could be educated in their local school with their brothers and sisters was groundbreaking at the time. Now it is assumed that the vast majority of children will attend their local mainstream primary school.
In 1991 during Mary O’Rourke’s tenure as education minister, DSI presented information to her about the scheme including research which was done together with St Michael’s House showing that children could be supported to attend mainstream schools. The Department of Education then took over paying the teachers. This was a big step in terms of inclusion as it saw additional supports being funded by the state rather than by a charity.
The Nineties
1991 saw the unification of the Down Syndrome Association of Ireland and the Munster Down Syndrome Association, leading to a united front when approaching government about issues concerning people with Down syndrome.
In 1991, a Special Education Review Committee chaired by Declan Brennan was established to make recommendations on the educational provision for children with special needs. The Brennan report was presented to government in 1993, but it was considered disappointing by Down Syndrome Ireland, saying that it led to a ‘labelling and categorising’ approach encouraging segregation into designated schools, and relegating parents to a consultative rather than decision making role.
It was only in 1998 that the Education Act gave statutory rights to parents in relation to their children’s education. It legally obliges schools to provide for a diversity of needs, values and traditions. The preamble to the Education Act (1998) specifically refers to provision for the education of persons with disabilities or special educational needs (SEN).
In the late 1990s the provision of SNA’s to meet additional care needs of children with disabilities in mainstream schools was introduced by Micheal Martin during his time as education minister following lobbying by DSI and other organisations
While inclusion was becoming more common in the 1990’s at least at primary school level, specialised courses for teachers were less common. The 1997 magazine include an article about a summer course provided by the local education centre together with the Louth Meath branch of DSI to support teachers to understand learners with Down syndrome. To this day, DSI takes a leading role in providing courses and workshops for teachers about Down syndrome.
1997 also saw the push for additional resource teaching, as described in this article
The 2000s
In 2002 the National Office undertook some research about providing a centre of excellence, with experts in Down syndrome that branches and individual members could call on for help or advice. In 2003, the National Resource Team was formed, initially focused on counselling (May Gannon) and early intervention (Ann Haig) This quickly expanded into a team of experts in health, early intervention, education, counselling and independent living. This was a big initiative for Down Syndrome Ireland, and established the organisation as experts in the field of Down syndrome.
Developments in education at this time were largely positive, but they often did not go far enough for those children with the most significant disabilities.
In 2000, Kathy Sinnott took a court case to force the Government of Ireland to provide a primary school education for her son Jamie who had multiple disabilities. Following this, in 2001, the High Court ruled that every person in Ireland had a constitutional right to free appropriate primary education based on need. The judgment confirmed that this was a fundamental right which was not limited by the availability of resources. The government did not challenge the High Court decision for children 18 years and younger, but successfully appealed its application to persons over 18 years of age in the Supreme Court.
To this day, students with disabilities in special schools and special classes finish their education in the academic year that they turn 18, regardless of any time missed through illness or repeating classes.
The EPSEN Act (2004) set out a comprehensive statutory framework for the education of people with SEN. The Act’s purpose was to make further provision for the education of people with special education needs in an inclusive environment with those who do not have such needs. It outlines the duties and responsibilities of school boards of management and principal teachers with regard to education provision for learners with SEN. It deals with the assessment and identification of SEN and the development and implementation of education plans for learners with assessed SEN. It confers on parents a series of rights in relation to their child with SEN.
Unfortunately, 17 years later, parts of the EPSEN Act that have still not been implemented. These include the provisions relating to an individual right to assessment and the right to individual education plans.
During late 1990s and early 2000’s, Joan Murphy worked with Professor Hillary Hoey and Magued Philip to develop evidence based medical management guidelines for children with Down syndrome. In order to develop the guidelines they studied 394 children aged 3 months to 18 years to provide medical and developmental data. They were then able to provide an evidence base to develop best practice guidelines.
The case was presented to the Minister for Health and Children in 2002 and this led to the establishment of a specialist centre in Tallaght hospital with Joan Murphy as the first Clinical Nurse Specialist.
The 2010s
In 2010, Down Syndrome Ireland’s first National Advisory Council was formed. This was an important step in the history of DSI, establishing a structure for adults with Down syndrome to formally engage with the organisation as members rather than through their families.
By 2010, the My Opinion, My Vote project was in full swing. Down Syndrome Ireland, along with 5 other European countries, was involved in a project to devise a political awareness education programme for adults with Down syndrome. This project was led in Ireland by Grainne Murphy, who developed the materials into a 2-year part time adult education programme.
In 2012, DSI partnered with the University of Queensland in Australia to roll out an evidence based adult literacy programme through the branch network to meet the literacy needs of adults with Down syndrome. This partnership is still going strong, with the course running in branches and some ETBs from September 2021, following a number of successful ETB pilots.
Resource hours for children with DS in mainstream schools was a big issue in the late 1990s and 2010s. Changes in1995, meant that access to additional resources was only guaranteed for children with Down syndrome with a moderate or severe intellectual disability. Those children with a mild intellectual disability, despite the complexity of their learning needs, were only entitled to a share of the school’s general allocation. DSI’s ten-year battle for allocation of additional resource teaching for all children with Down syndrome was eventually resolved by Jan O’Sullivan in 2015 during her time as education minister after much lobbying, campaigning and meetings with the previous education ministers
Another inequity in the education system was access to the extended school year, or July provision, which was available to some, but not all students with Down syndrome.
In 2019, a court case by two families challenged this inequity, and while this case was settled before reaching the court, the Department of Education acknowledged the need for students with Down syndrome to be included in the programme.
Until 2015, legislation around the rights of adults to make their own decisions was still an all or nothing situation, with people either considered able to make all relevant decisions, or as needing all decisions made for them. Adults deemed unable to make necessary decisions would become ‘wards of court’ under the 1871 Lunacy Act, losing the right to own property, get married or make any significant decision without court approval. In 2015 the Assisted Decision Making (Capacity Act) finally replaced the Lunacy Act. However, the Decision Support Service, which is key to the full enactment is still not in operation, meaning that people are still being made wards of court under the 1871 Act.
2018 finally saw the ratification of the United Nations Convention on the Rights of Persons with a Disability in Ireland, the last country in the EU to commit to human rights and equality for people with disabilities.
In 2017, the Member Support Team was expanded to include 6 full time people covering the areas of Early Years, Education, Further Education, Employment and Advocacy. It was also in this year that the Beauty in all its Forms national employment programme was piloted in Ireland by DSI and Alfaparf Milano. This is a programme specifically designed for adults with Down syndrome to enable them to train and get work placements as hairdressing assistants in salons around the country.
The Work Skills programme was developed in conjunction with Accenture to meet the needs of students finishing the Latch On and MOTE programmes to be taught concrete skills to enable them to succeed in the workplace. Together, the three programmes now form DSI’s Ability Programme.
In 2019, we decided to push for specific targeted programmes at preschool, to try to give children the best start in their early years education. After much research, we settled on the ‘See and Learn’ Programmes developed by Down Syndrome Education International. An ambitious Pilot project aimed to get See and Learn training and materials into every early year’s setting with a child with Down Syndrome, to facilitate targeted language learning using visual methods and to measure the outcomes. While the project was derailed by the closure of all preschool settings in response to the pandemic, it was clear to parents and educators that the programme works. Copies of the programme were bought for each local branch and requests for training continue. We have also worked with the public library service to provide information and the programme is now available in some libraries.
The 2020s
The current decade started with the pandemic, changing the face of the world and making everyone in DSI think carefully about how support could be provided in a locked down country.
After the initial shock, we began to explore first providing additional information, then new parent groups, online classes, training seminars and a new online course for adults with Down syndrome.
2020 was the year when all students with Down syndrome were finally included in the state July provision scheme for the first time, though not without considerable lobbying and a refusal to compromise and accept less than a rights-based approach. This extended school year is far from perfect, with many families still unable to access the type of provision they would like, but having the right to apply is a good start, and we continue to work with the Department of Education to highlight issues.
2021 sees the beginning of a structured expansion of the adult education programmes into the state further education and training sector through partnership with SOLAS and the ETBI.
Branch timeline:
|
1971 |
National Organisation formed in Dublin |
|
1975 |
Sligo |
|
1975 |
Tipperary |
|
1976 |
Kerry |
|
1977 |
Mayo |
|
1976 |
Cork |
|
1979 |
Waterford |
|
1979 |
Wexford |
|
1980 |
Kilkenny |
|
1980 |
Offaly |
|
1981 |
Cavan/Monaghan (Cavan and Monaghan have since formed separate branches) |
|
1982 |
Carlow |
|
1984 |
Clare |
|
1984 |
Longford/Westmeath |
|
1985 |
Galway |
|
1985 |
Kildare |
|
1985 |
Louth/Meath |
|
1987 |
Donegal |
|
1987 |
Roscommon |
|
1994 |
Ballinasloe & district (closed 2018) |
|
1994 |
Belmullet (closed 1998) |
|
1994 |
Leitrim/west Cavan |
|
1995 |
Laois |
|
1995 |
Limerick |
|
2004 |
Wicklow |
|
2008 |
Athlone |
While the National office is focused on lobbying for better services and providing research and up to date information, local branches are focused on filling in the gaps in services and supports. Local fundraising is used to provide free or subsidised services to members.
Speech and Language Therapy support is provided by most branches, either by directly employing therapists or subsidising families to access private therapy.
Branches are increasingly providing much more than parent support. A whole range of services, activities, training and recreational activities are testament to the incredible strength of the branch network and the volunteers and committee members who work so hard to improve the lives of people with Down syndrome and their families locally.
Over the next few weeks, we will be sharing individual branch histories.
