With a new CEO and expanding programs The Dyspraxia Assocation of Ireland is heading in a new direction

The Dyspraxia Assocation of Ireland supports the 6-10% of the population that has the condition. Formed in 1995 the assocation is a registered charity and was created to raise awareness of the condition, ensure adequate funds are available to people with the condition, provide an information and sharing and support network, improve diagnostic services, organise meetings for people with Dyspraxia/DCD and their families. and provide a link to professionals, for people with Dyspraxia/DCD and their families. Sharon Lane was recently annouced as the new CEO of the assocation, I caught up with Fay Dunne to find out more about what the assocation has been doing and their plans for the future:

1. To someone who may not be aware of the condition, what is Dyspraxia? Is there an analogy you could use to describe it to someone who may not be aware of it?

Developmental Coordination Disorder (DCD), also known as Dyspraxia in the UK, is a neurological disorder affecting movement and coordination in 6-10% of the general population and impacting on children, young people and adults. Although age of diagnosis differs for many people the symptoms will always have been present since childhood. This lifelong condition is recognised by international organisations including the World Health Organisation and is included in the DSM V – Diagnostic Criteria for Developmental Co-Ordination Disorder (American Psychiatric Association, 2013)

A person’s coordination difficulties affect their functioning of everyday skills and participation in education, work, and leisure activities. Difficulties may vary in their presentation and these may also change over time depending on environmental demands, life experience, and the support given.

Movement and coordination difficulties generally persist in adulthood although individuals do become more skilled with age in adapting to these challenges. Conversely non-motor difficulties may become more prominent as expectations and demands change over time.

DCD frequently co-occurs with other neurological disorders such as dyslexia, dysgraphia, ASD and ADHD. These co-occurring neurological conditions can have a substantial impact on a person’s life including mental and physical health, and difficulties with time management, planning, personal organisation, and social skills. This is why timely assessment of needs is carried out and flexible supports are put in place for people with Dyspraxia/DCD. With appropriate recognition, reasonable adjustments, support, and strategies, people with DCD can achieve great outcomes and lead full and satisfying lives.

2. How does the association help people with Dyspraxia? What successes have you had in this area?

We are the national representative body in Ireland for people with Dyspraxia/DCD. We operate a national helpline to assist people who may be seeking assessment, have recently had a diagnosis and their family members/friends. With the impact of COVID-19 we have seen a marked increase in calls to our helpline from people who are distressed, anxious and isolated. Added to this is the loss of primary care services to many children with dyspraxia in HSE and school settings. To try and address these issues we have reconfigured our educational workshops and now deliver fully online. This has provided greater access for people from across the country and abroad to link in. Similarly, our social activities for children and teenagers are now fully online and available to a much broader audience. In March 2020 we began partnering with the University of Limerick to deliver Occupational Therapy telehealth sessions to people and following the success of this venture we have added physiotherapy and music therapy telehealth programmes. In addition, we engage with representative bodies in disability, mental health, and children’s rights to raise awareness of Dyspraxia/DCD and to lobby for improved service coordination and diagnostic pathways.

3. Sharon Lane recently joined as the new CEO, what experience does Sharon bring?

Sharon has worked across disability, mental health and community development services in Ireland and Australia for many years. Sharon has a strong background in facilitation, community engagement and co-production that will be of great benefit to Dyspraxia/DCD Ireland as we finalise our strategic plan for 2021-24 and move forward with a range of exciting new service offerings.

4. What are some of the plans the association has for expanding your services further in 2021 and beyond?

Our new strategic plan will be launched in September of this year. We are very excited about the opportunities that have been identified and are looking forward to expanding and developing our services over the next three years. Following the success of our online workshops, activities and therapeutic programmes we intend to continue developing this service offering so that we can have a broader reach across the country. Another key objective is to continue to raise awareness of Dyspraxia/DCD with health and educational professionals and across the broader community. It’s amazing how few people have heard of the condition considering how common it is and how detrimental the impact can be for a person in school, social and work settings without the relevant supports.

5. What impact did the pandemic have on your services? Have there been any benefits from this period?

As mentioned previously the pandemic meant that we had to move from an in person service model to an online service model. This had its challenges particularly as the organisation only has 1.8 staff members and were already at full capacity with a range of other projects but it quickly became a priority and has had very powerful outcomes. As a result of the pandemic we developed the online therapeutic programme which has proven to be a best practice model providing supports to people with Dyspraxia/DCD but also in training an entire cohort of health professionals in the provision of telehealth services and in gaining an in depth knowledge of Dyspraxia/DCD. We also focused on further building our volunteer programme during the pandemic targeting a range of skills that we needed to progress including social media, marketing, fundraising and data management.

6. The association relies a lot on fundraising. What fundraising have you found works best in the past? What’s been the best fundraising campaigns you have done to date?

The Lord Mayors Ball in January 2020 was a significant earner for us. We were one of three charities selected by the Lord Mayor. Our supporters and members bought tickets to attend the ball and raise money for us. We have also had donations from a private trust and  commercial companies. Generally, these types of donation are made when there is a personal connection to Dyspraxia. These donations have been very significant in enabling us to provide services on a national level however they are not secure and we are constantly looking for new opportunities to develop our fundraising strategy so that we can deliver the much needed supports and services to individuals and families with dyspraxia around the country.

7. What training or corporate services do you provide to companies? What successes have you had in this area?

We work with employers to raise awareness of dyspraxia/DCD so that employers feel confident is supporting their staff member with dyspraxia. We explain how reasonable accommodations can be made in the workplace and how many people with dyspraxia have unique skills that are particularly suited to specific industries. Many companies are now focusing on diversity and inclusion and we assist them in developing a comprehensive understanding of what this means and how their company can be best placed to build a high quality inclusive employment programme starting from advertising posts and accessible interviews to successfully retaining staff in post. We have noticed an increase in the number of employers who are interested in meaningful diversity and inclusion programmes and who are open to new and improved ways of attracting and retaining people with dyspraxia and a  range of other neurodiverse conditions.

8. For people with Dyspraxia and who are looking for work are there any companies you would recommend for specialist assistance for people with Dyspraxia gaining employment?

We work very closely with Specialisterne and the Open Doors Initiative to support people with Dyspraxia into employment, training and further education. We also work closely with the national Individual Placement and Support programme for adults with Dyspraxia and a diagnosed mental health condition to support them into competitive employment.

9. Are you fans of any other people, programs or companies in the wider Diversity and Inclusion space?

We are fans of many people, programmes and companies in the diversity and inclusion space. I don’t think we could fairly single out one over another as there are so many facets to ensuring that the D&I issues are identified and addressed across many sectors. There are wonderful organisations and individuals working with people with disabilities including mental health, the traveller community, refugee groups, family carers and so many more. Then there is the issue of gender diversity, we still have a long way to go there. Many companies are being made aware of their responsibilities in developing responses to ensure that diversity and inclusion forms part of their future employment strategy. It would be nice to see our government departments being as pro-active. Some are very good but others are lagging way behind the private sector and need to do much more.

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