Inclusion
Inclusion is doing ordinary things, with ordinary people, in ordinary ways, in ordinary places.Getting a Life, Not a Service
How can we use what we have to create what we need?’ is a question that we often ask ourselves and the families that we work with. It arises from a belief, a strongly held philosophy, that much of what is good in life is not in the currency of money. It also comes from a recognition that we can lose years, decades even, in the struggle to obtain better services and more resources. But that ultimately our children’s life is here and now. If we shift our focus, we can use the tools that we have to build a good life, an ordinary life for the people we love and support.
More than ever, we believe that families need to be thinking about what really matters and what makes a difference in ensuring that we are living good lives and planning together to create meaningful lives with and for our children as they reach adulthood. Starting to think about creating a positive and hopeful vision for the future, a vision that is supported by others is key to moving in the right direction. Planning for the future changes the present!
In our work with families, much of what people say makes a good life is not provided by services. So, let’s figure out:
- What we can do ourselves.
- What we can do with others.
- Where we might need outside help.
If Not This, Then What?
Many families and support groups are clear on what they are against and what is not working – but less clear on what they are for and what is working. We suggest you start by developing a vision of a good life. Take time to discover what is important to your family member and what are their gifts and talents. Focus on their strengths, not their deficits.
Get to know your child even better, and help them to recognise their assets and gifts – we all need support and encouragement to recognise, use and share these gifts with one another. If your goal is the community and an ordinary life, remember that communities aren’t interested in our problems – only in what we can contribute.
Take some time to plan together as a family about the essential elements of a good life for your family member. It may seem strange at first, but this visioning process is remarkably powerful in helping to set a positive direction. This type of intentional behaviour is necessary to overcome some of the barriers which your family member may face and will help you to work out ways to get around typical setbacks.
Planning that we do together as families may take the form of an ongoing conversation and does not even need to be written down. This can help us discover where we want to get to, and to work together on ways to make that happen.
Bear in mind that children’s (and adults’) fundamental needs are for inclusion, participation, relationships, value and respect. Ask yourself how you can support that.
Where to Start
We know that an ordinary life, a typical life produces better outcomes for people than segregated pathways. Even so, people will try to direct you and your child to segregated options and you will need to be clear when this happens what your choices are.
This is not only important at crucial life stages like starting a new school or leaving school, but also when considering leisure and lifestyle options for your child, such as joining clubs and other groups. It is really helpful to connect with other families and to work with people who are positive, have high hopes and are creative, and who have managed to create good lives for their own family member.
Work out what a good life is by creating a compelling vision of a good life that you can articulate to others. Thinking about what a good life looks like now and in one, two and five years’ time will help you to get clearer on what you are working towards specifically.
Focus on belonging, relationships and valued roles. Many families have found this approach has a better track record than relying on services to figure it all out.Be aware that relationships, friendships, lifestyle interests, work opportunities and living arrangements will not happen automatically. Begin to practice the ‘art of asking’ and of ‘letting people in’ to assist and guide you in supporting you and your family member.
Thinking About Roles – What We Can Do
All of us participate in society through our roles. It is a focus on roles that we achieve many of the good things in life. Consider all the roles you occupy. Some were ascribed to you at birth – son or daughter, brother or sister. Others you acquired as you grew, taking up roles in school, the church, in sports groups and so on.
Because of culturally held low expectations, the lives of people with disabilities often do not follow these typical pathways. By working intentionally to create and sustain opportunities we can make sure our child is not left behind. Think about what valued roles your family member has in your family. Work on developing these roles first, as a strong foundation for taking up age-appropriate valued roles in the wider community. At the same time, work on your child’s image and competencies. Recognise that building and sustaining a good life for your family member is a lifelong project.
Always try and select the most highly valued option for your child as this maximises their chance of positive connections with their peers. Think about what other people their age and gender do. If you are planning an eighteenth birthday party – ask yourself where do other young adults celebrate and in what way?
Positive Communications – Choosing to Place Your Focus On What Is Strong, Not What Is Wrong
Staying Connected
Is there a network (no matter how small) that you can draw on when things get tough? People in your corner are a blessing! What can you do to better advocate or speak up for your family member? What can you do that helps to grow connections between your family and the wider community? If you are trying to increase the number of relationships in your family member’s life working on positive introductions can help. Are you able to introduce your child in a positive way? Are you able to introduce them in a way which is likely to draw and invite people in? Find a family based organisation that is interested in connecting the vision and goals of families and who will support you to intentionally plan for the future. Self-directed living is about stepping into your own power and setting the direction of your own lives by taking back some control and ownership. It is essential to believe in the natural authority that you have as family.
If you have any questions please contact us
In 2015 we attended a one day workshop run by Leap focused on empowering families towards creating an ordinary life for their child with disability. At that point we had been learning to live with a complex physical and intellectual disability diagnosis for our son Ed. We could not articulate what we wanted for him, but we were certain that we did not want him to experience a life of exclusion and special, away from his siblings and other children.
Following the workshop with Leap we started to understand that we needed to change our language and how we spoke about Ed towards a strength based, positive articulation of who he is. We sat with our children and discussed what they imagined a good life to be, and interestingly all three held the same hopes for their life. The reality that we could be the leaders in Ed’s life while he was growing and navigating his childhood became obvious. We started to outline a vision for Ed’s future, one where he would work within his community, within a valued role, contributing his expertise and value in a meaningful way. This vision became our destination and all decisions that we make are guided by it.
Recognition of Ed’s strengths provided a foundation for decision-making for Ed. It assisted in the decision around where he would attend school. Ed attended mainstream primary school, and remained in his class every day with the support of a shared SNA. We were able to outline our vision clearly to each teacher and as a result they applied their expertise to ensure that Ed was educated using a universal design for learning approach. This allowed him to demonstrate his understanding of the knowledge gained in a way most suited to his strengths. Ed moved on from primary to secondary school. Again, thanks to the language learned and support from Leap, Ed continues to enjoy his educational journey, surrounded by his peers, in an inclusive classroom. Ed is being knitted into his community, willingly, and he is experiencing a welcome that is true and genuine. It is not based on a “special needs” approach, but rather it is based on a recognition of his unique abilities and wonderful imagination and creativity It is tempting to pick the safe route for my wonderful son, yet the” tougher” route will be the one that provides a more meaningful and fulfilling future.
Today Ed will be attending the local drumming camp. He will independently take the bus there and back. He will hang out with his peers. He will have the life of any other 14 year old. We do not need to access service, he is entitled to July Provision, but because he is knitted in community, he does not need it. This has not happened by accident, rather it has been intentionally created by his family and friends with the support of Leap, buoyed by the vision for his ordinary life, his good life.
Ultimately our vision remains unwavering; Ed will work in a paid job where he thrives, included and valued as part of his community. He will live interdependently, supported by friends and family. He will live a good life, thanks to the support of Leap in helping us to articulate and clearly outline our vision for his future.
I learned more from the Leadership for Inclusion weekend than I thought possible, it was very powerful shared with like-minded group of people who want their son or daughter to live an inclusive, ordinary life. These are the moments where ideas grow wings and fly and our children and young adults get to live happy, fulfilled, inclusive and ordinary lives. I left Galway with fire in my belly.
The work that Leap do is crucial. Without their experiential wisdom and training for Families, the life our family member would have taken an entirely different trajectory. They have been instrumental in keeping us on track to create a good life for our son, where he is a valued member of society. The weekend workshops have given us the resolve to carry on. It’s really important to meet other families, hear their stories and to support each other on our journeys. We have learned that an ordinary life, not a special one is what makes for a good life. Everyone has a different type of intelligence and has something valuable to offer their community. It is crucial that Leap continue their good work, offering more workshops to other families to support our often invisible citizens to be fully visible and celebrated for who they are.
Leap provided us with fantastic support on working with families. The two days of training they delivered provided staff with an honest platform to discuss proactive ways to engage families, to understand what is service business and what is family business, as well as reflection on their roles. The training provided a way of valuing and enhancing the role support workers provide and feedback indicated staff really appreciated the opportunity to learn and develop their skills and understanding. We look forward to working with you again! Thank you.
Leap provided us with fantastic support on working with families. The two days of training they delivered provided staff with an honest platform to discuss proactive ways to engage families, to understand what is service business and what is family business, as well as reflection on their roles. The training provided a way of valuing and enhancing the role support workers provide and feedback indicated staff really appreciated the opportunity to learn and develop their skills and understanding. We look forward to working with you again! Thank you.
My first encounter with LEAP was in 2019 when I attended a family weekend with my three children, two of which have special needs and complex medical issues. As a single parent I was sceptical as to how the weekend would unfold but LEAP was extremely organised and there was lots of support for the children so I was quickly reassured. I was introduced to inclusion and ‘what a good life’ looks like and the role I have in helping my children have that inclusive good life. On one hand I felt extremely heartbroken at the thought of my children not experiencing an inclusive life and on the other hand I was extremely motivated at the prospects of my children living life to their full potential.
My children have two different diagnoses and up to this point I was a member of each respective special needs club and there was no club that welcomed both or all of my children just as they are. The special needs clubs segregate children and parents and only advocate for the needs of that particular condition. They don’t prioritise inclusion; in fact, they thrive on segregation and organise events and activities that keep “us” all together and away from the outside world. To me, this sends an indirect message to our communities that ‘we are different and we don’t want to be associated with you’.
LEAP helped me look at life from a different perspective, to see my children as just children, with different strengths, weaknesses and opportunities just like everyone of us.
I stayed linked in with LEAP and was able to liaise with Rachel on many issues which has helped me immensely on my life’s journey as a single parent with three children. LEAP has been very supportive and I’ve never felt alone and when I questioned my own direction, I was gently guided by Rachel to stay on track.
In 2024 I attended LEAP’s ‘Leadership for Inclusion’ series and learned a lot about the history of disability in Ireland and the changing attitudes of our society. We discussed our basic human needs such as food, shelter and connections and also the importance of inclusion, participation and contribution to society. This led to hearing some amazing stories about our shared values and stories of the achievements of our children. LEAP has created a platform for families to network and connect with one another and open up discussion groups amongst us.
Thanks to LEAP I really feel that I am an integral part of this movement for change. Through their workshops I feel that I now share the same vision of ‘living in a community where we all belong’ and our differences are accepted.
Overall LEAP empowers families with valuable information and practical advice about inclusion and equality. They are there to support you and help you speak up for your children when faced with challenges, to reassure you, and even hold your hand. There is genuinely no other charity that I know off that offers this unique service. I feel its imperative that LEAP secure funding to continue its core mission and help in the creation of an ‘Ireland where everyone belongs’.
We are a family of five living in Laois with three sons, two of whom are on the autism spectrum. Ruairi, our eldest at 19, just finished school in June. We kept him in school an extra year as we were uncertain about his future. This year, with Ruairi eager to move on like his brother Oran, who was also finishing school, we began exploring local opportunities. Ruairi made it clear, saying, “I am the same as Oran, I want to go to college and get a job.” With his vision so clear, we began our journey.
While local services were helpful, they didn’t align with Ruairi’s goals. It was only when we spoke with the occupational guidance officer that we were introduced to Leap Ireland. That same evening, I spoke with Leap for 40 minutes, and they explained their approach. I was thrilled that Ruairi’s voice could finally be heard. Leap sent information about their services and connected us with other families to give us a clearer picture of what they offer.
After discussing it with Ruairi, we invited Leap to our home. Together, over four hours, Ruairi developed his vision with our support, and we created a plan for him to live a full, inclusive life. We later attended training at Leap’s Westmeath premises, which was invaluable. We met other families with similar visions, and Leap was always available for guidance, never making us feel like just a number.
With Leap’s help, we set up a circle of support, and since then, we haven’t looked back. Ruairi is excited to start college and engage more with the community. His personal budget will be available in September, and he’s already trying new things with our family and Leap’s support. We are confident Ruairi will attend college, find employment, and be a valuable member of society, just like his peers.
We’ve recommended Leap to many families, and once Ruairi is in college, I plan to advocate more for this choice. Everyone deserves to know their options, and without Leap, Ruairi’s story might have been very different. His future is now in his hands, with our support. We cannot thank Leap enough.
Hi Rachel,
I just wanted to personally thank you for all you gave us over the weekend. I didn’t properly hug you and thank you when you left. The work you along with Trevor and your team do gives steadfast hope and strength for us to continue to reach for our goals and dreams and the confidence to know we’ll get there. It’s scary at times (sometimes often!) but you really do help to take the fear away. Thank you, Rachel. I really do appreciate what you and Leap are doing for all of us at the weekends and for so many other families. I hope you now have some time for yourself to recover, rest and relax and bathe in the realisation that you are doing and instigating something mind blowing and wonderful.
Family testimony, Leadership for Inclusion Series, 2024