Support providers need to focus not just on people with learning disabilities, but their families as well, says Certitude’s Aisling Duffy.
I am unashamedly borrowing the title from a great song and personal favourite by Sister Sledge! It goes someway to succinctly capture the focus that is needed on family during this Learning Disability Awareness Week.
Over the many years I have worked with people with learning disabilities I can bring to mind many examples of families working together - often against the odds - to support their loved one to get the right support to live their life. These are stories of resilience, hope, exhaustion and love but also, too often, of loneliness and despair. Families worn out by what feels like a relentless fight to simply be heard and to get the support needed for them and their family member with a learning disability.
Too often adult social care has focused on the needs of the person with the learning disability, sometimes to the exclusion of anyone else. But people don’t exist in silos; they have a rich history and set of family relationships that are part of defining who they are.
At Certitude we have learned that it is not enough to focus on the person with the learning disability. Our support teams appreciate and engage with each individual’s family in a way that respects their personal history. Of course, this process is not always easy, straightforward or predictable. Every family, my own included, has their own particular dynamics; we have to appreciate that families love each other in different ways – ways that are not always easily recognisable to others. I am concerned that time and again only lip-service is paid to these relationships for adults with learning disabilities.
Some of the ways that Certitude is seeking to address this include:
• Specifically recruiting people with lived experience, including family members of people with learning disabilities, in our workforce
• Using person-centred planning tools like Family Plans to understand the family story; what is important to them, who’s who and so on
• Creating family One Page Profiles to help us understand what is important to and for family members in supporting their relative. These are used and known by all staff involved in support
• Developing decision-making agreements to establish who takes which decisions between the individual, the family and the staff team.
These tools are a great help to teams in developing relationships with people they support and the person’s family. But, as we all know, tools alone will not achieve this focus on family - we must all, commissioners and providers alike, develop and nurture holistic support that respects the joy, trials and tribulations that being part of a family entails.
Aising Duffy is chief executive of service provider Certitude