Inclusion

Inclusion is doing ordinary things, with ordinary people, in ordinary ways, in ordinary places.
3

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

The depiction of the process to obtain services as a battle is often heard from families. But what if waging this battle stops creativity and big thinking? What if we as families steadfastly refuse to draw the battle lines and chose to engage in a different way, by attempting to build positive connections with the people we come into contact with. This is an intentional strategy, and yes it can be more challenging than ‘giving out’. But it is also much more rewarding, often leading to feeling that people are with you, are on your side and are willing to support your ideas. Being friendly, well prepared, reasonable and willing to work in partnership can increase your chance of success, and bring allies and supporters around you.

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

Contact Us

I am delighted to be connected with Leap. Since having attended one of their family leadership weekends back in 2012 my outlook for Liam's future has been full of aspirations envisioning what "a good life" could look like for us. I have attended many Leap events since that time. Thank you so much Rachel Cassen and team for your inspiring work.

L. Nolan

Parent, 2019

Leap were able to effectively manage the set up and delivery of training to a range of participants in various venues around the country. They were always professional, punctual and courteous. They managed a range of diverse situations and learning groups with skill and diplomacy. Their training and workshops were highly engaging and were designed and delivered to an extremely high standard. Training content and handouts were clear and concise even whilst covering complex topics. Training was well paced and utilised a range of methodologies including discussion and facilitated reflection, small group work and values clarification. I would have no hesitation in recommending Leap as a training provider.
Brian Smyth, Deputy CEO

Leitrim Development Company, 2019

This is just to say a huge thank you to you for yesterday’s ‘Creating a Good Life’ course in Galway. For the first time since our lovely boy was diagnosed, I am filled with enthusiasm and hope about how we as a family can help him to have a great future.
Parent who attended a workshop

February 2017

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.
RehabCare

May 2016

Parent feedback to the Autism Services was extremely positive and encouraging. There were a number of key responses from parents who attended the workshops. Parents advised that the workshops offered a safe supportive place to discuss the “real practical issues” for them as family units. It offered an opportunity to explore and challenge the value they place on their own roles, strength and capacity as parents /carers and where they and their children “fit” in society. Parents report an enhanced confidence in determining the pathways for their children advising they had an increased sense of “hope” and “empowerment”. Parents acknowledged that they are more willing and confident in ensuring their child is involved in their local community thus developing and widening the “natural” supports available to them as a family. Parents reported a clearer understanding of the role of support services in relation to their family. Parents who were in attendance advised they would recommend the workshops to other parents/ carers.
HSE West

2016

Very valuable - the best information, positive, beneficial. More so than any meetings that I have attended since my son's diagnosis Thank-you.
Parent who attended workshop

February 2016

For the last 6 years I have worked closely with Rachel Cassen, Director of Leap, on a number of projects, and am constantly impressed by her dedication, energy and capabilities in bringing together people from diverse backgrounds to work towards a common goal. The Centre for Disability Law and Policy at NUI Galway has a strong relationship with Leap, which began with Leap’s involvement in research on the personalisation of supports for people with disabilities in Ireland. Following the publication of the Assisted Decision-Making Capacity Bill in July 2013, our Centre, in partnership with Leap and Inclusion Ireland, hosted the first set of national seminars to explain the Bill to people with disabilities and their families. As a result, I was invited by Leap to form the ‘Self-Directed Living Research Group’ – bringing together families, self-advocates, disability service providers and brokers with a shared interest in community living. We jointly chaired the group, and sought out funding opportunities for our work – securing a small grant from the Irish Research Council for a series of workshops and a research report on the experiences of people with disabilities and their families in using individualised funding to create good lives in the community. The workshops we held around the country for this project led to the publication of a dynamic research report, which documented the important lessons learned by people with disabilities and their families on their journeys towards self-directed living. This research was well-received globally and was cited as an example of good practice during the plenary session of a conference in Vancouver in October 2015 entitled ‘Claiming full citizenship – an international conference on self-determination, personalisation and individualised funding.’ Since the completion of the report, Leap has gone on to develop the project further with a new group of families and we have continued to collaborate and support Leap’s work in the fields of inclusive education and equal citizenship. For example, Leap presented at our annual summer school in June 2019 on the subject of young people with disabilities belonging to families and communities. Rachel is always a pleasure to work with and someone whose vision and integrity I greatly admire.
Professor Eilionóir Flynn, Director

Centre for Disability Law and Policy, NUIG, 2019

When I came away after the Leap weekend I was on fire. I really think it's the way forward and it has really filled in the gap in my head that was missing. I think it's brilliant for all agencies to be involved but I think the real change has to be on the ground through families! Families and their aspirations for their loved ones really change things especially in extended family, neighbours, community and society. Always remember you can read books, study it but we are the ones who live and breathe this every day of our lives.
Parent who attended a workshop

April 2016

I want to say thank you for the wonderful course that I was lucky enough to attend today. This morning I had no idea of what lay ahead of me and I thought it was going to be another one of those courses/gatherings where people moan about the lack of services and where I might pick up perhaps one or two ideas, but how wrong could I be. As a mum to two children with ‘disabilities’ (however I'm not sure I agree with this word) a fourteen-year-old and a seven-year-old whom both struggle to conform and fit in, I learnt that my children have so much to offer society. I learnt the importance of celebrating and building on what my children can do, not what they can't. I met some amazing people that are on similar paths to me and we learnt and supported each other and I look forward to meeting up with them all soon. I cannot recommend this course enough and if you get the chance take a few hours out and attend it. Oh, I forgot to say most importantly I see hope for the future. Thank you again.
Parent who attended workshop

February 2016