DISPASSIONATE view of the need to give people with Down’s the space to make real choices, argues Karen Gilligan
Becoming a board member for Down’s Syndrome Scotland was a big decision for me. I was conscious that being a trustee involved making decisions that would impact on people’s lives. For me becoming a trustee was about wanting to make a difference to society and how people with Down’s syndrome are regarded.
I have four children, aged from 22 to 28. My second child Claire was born with Down’s syndrome and an associated heart defect. As a family we have used health and education services for Claire. Although I have experience of being a parent of a child with Down’s syndrome and have my own opinions about what services I would like to access for her, I have always maintained that there has to be choice and I am keen that Down’s Syndrome Scotland exists to allow parents, carers, physicians, educationalists and those with Down’s to have sufficient knowledge and information to make informed choices. It is vital that a trustee acts in the best interests of the charity and not themselves or their family.
Being a trustee involves making balanced decisions, asking questions (especially about things you do not understand), being conscious such decisions will impact on other people, and finally, ensuring you do not take personal interests into the equation. Sometimes decisions taken at board level can be emotive and there may be disagreement, but this is a positive, allowing and encouraging everyone to put forward their views.
In the Down’s syndrome community there has been much to celebrate. Advances in open heart surgery have allowed Down’s babies to expect to have a lifespan similar to those who do not have Down’s. The adoption of integrated education has also allowed young people with Down’s to be educated alongside their peers. But there is still a way to go, for example, in employment. There is still a massive gap in the job prospects for young adults with learning disabilities. Volunteering opportunities seem to be plentiful but accessing paid employment is difficult. I work full-time and the skills I have include the management of a social enterprise employing young people furthest from the job market, so employment was an area in which I wanted to become involved.
At board meetings a trustee must ensure adequate information is received and if not they should request it, so that an informed decision can be made regarding financial dealings or the development of the charity. Trustees must ensure all activity is in keeping with the aims, mission and vision of the charity. At times external advice has to be sought. I have a BA in Social Science and a Master’s in Business, skills which can give me some insight into issues of business development or organisational change.
The commitment required is more than just four meetings per year as time has to be put aside to read board papers thoroughly prior to the meetings and preparing questions. Trustees need to act as a check and balance on the planned activities of the Senior Management Team, asking pertinent questions and persisting until an answer is received. The benefit to me of being a trustee is to ensure that people with Down’s, and those yet to be born, have access to the fantastic information and support that the charity provides from cradle to grave and that decisions are taken to ensure that life is that little bit easier for them and their families.
• Karen Gilligan is a trustee of Down’s Syndrome Scotland