Having a fulfilled life without discrimination

This year, the first London Partners in Policymaking course run by In Control is taking place thanks to funding from Certitude, The Avenues Group and Integrated Personal Commissioning Group.

Between April and September this year, 21 carers and people with disabilities across London will come together for two days every month and cover course topics including: understanding and relating to services and systems, including new guidance and changes, listening, learning, planning and creating together, why health and social care services have been designed the way they have and how policies and new ideas come about. They will join the national network of more than 2000 partner graduates – informed, empowered and changing lives for the better! Kim, Family Support Practitioner and carer who is attending the course explains this in more detail…

My first two days were completely up lifting. We all are unique individuals that have first-hand experienced feeling very isolated and having minimal support offered from professional services even times of crisis.

Having the opportunity to shareour knowledge and understanding as a group and share the life experiences and struggles of our loved ones made me feel that I belonged in that group and that I was not alone.

We have all had to fight for our children to be accepted for who they are and become the people they have thepotential to be.

Sharing life stories has been overwhelming, one parent told us of her daughter’s determination to study for a degree when others said she would never be able to achieve this because of her communication difficulties. I felt that this parent had such a powerful presence and her determination to support her daughter to follow her dreams was inspirational.

The general public often avoids approaching people with disabilities because they do not know the right approach to take, especially if they need support with their behavior. I have had to put up with disapproving looks and comments from both the public and professionals. As a parent this feels very alienating and discriminatory. It is so difficult to accept that people do not understand the bigger picture. I hope this course will enable me to challenge discrimination in a more positive way and influence people to have a better understanding of learning disabilities.

Our loved ones often get labelled by the public and professionals as being a problem. They have tried to segregate them from their community because of their differences. I hope that after this course I will feel more confident to raise awareness with both the general public and professionals of what it feels like to be on the outside. I want my daughter to be included rather than excluded and to be seen as equal so shecan achieve her own dreams and goals and is able to have a fulfilled life without discrimination. Coming together as a group supporting each other to speak out and influence decisions and policy making will promote positive changes for everyone’s future. We have the power to make these changes by supporting each other.

I’m looking forward to the next two days as we are covering person centered thinking. This all about the person’s wants wishes and desires rather than that of others in their life. I want my daughter to have control over her life and that’s what I keep fighting for.

Being a parent and being able to be part of a group in this coursehas been life changing for me. Families are frequently subject to high levels of stress and frustration often due to lack of information. We often have to fight justto get services to listen.Having has so many negative experiences in the past, we need confidence to challenge and have tools and knowledge to work in partnership with services.

This course has encouraged me to be more actively engaged, share my own ideas and give others support. As a parent of a daughter with severe disabilities we need a great network of support to have the power and tools to take control, influence and improve self-directed support. This will achievea good quality of life and everyone will have control.

The course has been a great way to get more involved and have a good understanding of what is available for our own families. It is important for me to help my daughter’s dreams become reality in a person centred way and be able to live herlife the way shechooses and nota life led by services.

Bernie, who is attending the course with Kim adds: I love love love the course. It’s already made me realise the enormous change in policies over the past 30 years that make life so much better for all our friends and loved ones with disabilities. I feel excited about what could be achieved in the next 30 years, through parent support and determination.

Meeting such energetic minded parents with such a positive outlook was really inspiring; I wish I had known about this course years ago.

Bernie holds a peer led group for carers every 4-6 weeks, who support each other and share information and knowledge. The next Carers Forum is on 5th July 2017, 11am at Pret A Manger on Ealing Broadway.  All carers of people we support both in Ealing and further afield are very welcome to attend. Please contact Bernie directly for more information on future dates : berniemoore_7@hotmail.com or 07932 406 138