I was recently invited by Justin Smith (Operations Manager for Thera East Anglia (TEA)) to listen to a series of audio tapes, which are included in TEA’s ‘My Happiness Project’, and to hear more about the workshop Justin has designed for working better with families who have sons and or daughters with a learning disability.  The audio is of interviews with the family of a person TEA support and the journey they went on and which forms the social history for the person we support.

Justin shared with me the essence for this initiative and workshop  as:

1.         Thera East Anglia wants the best for people we support and that means working positively with families and appreciating their perspective and experiences.

2.         We need to know more about people’s histories and journeys. We can support people better by understanding their journey.

3.         The person we support is THE expert on their life and how they want and need to be supported. Families can be a close second: we must respect and involve them.  This is part of the route to working in a co-productive way.

4.         Families want to trust us, and we want them to trust us. It’s a journey involving communication and relationship building.

5.         Understanding the perspective of the families and loved ones of people we support and hearing them can only lead to better support.

My Five takeaways from listening to the mother and sister from the audio tapes:

  1. Bewilderment – what do I do next? On receiving a diagnosis for their son.
  2. Trying to understand what the ‘professionals’ (doctors and or social workers) are telling you about your child’s ‘condition’.
  3. Finding support when there appears to be none.   Especially for the family I was listening to, this was in the 1970s and few people knew what autism involved for a person who was having to cope with this condition.  (Even in the early 1990s, as a family we were faced by a lack of understanding from those around us).
  4. The age of deference – ‘professionals’ know best (often even when they didn’t) and therefore you should do as they suggest.   
  5. Guilt – Could I have done more?  Could I have done things differently?  Did my son know how much I loved him?  Did I need to be separated from him?  Did my other children miss out on my time and or love?  Would I ever be able to make it up to him for the time we were not together?

In my experience as a parent carer for our youngest daughter, and a Trustee of a Carers Centre for families, these five takeaways are common to many families.

Related:  ‘Being Bettina’s Parents – The Barriers we face’ https://leadershipintheraw.org/2022/10/12/being-bettinas-parents-the-barriers-we-face/

Reflections as a parent for our daughter, Bettina who copes with a learning disability, autism, and epilepsy:

Bettina and I at an outdoor pursuits centre in Wales.  At the time of this picture Bettina was still struggling to come to terms with her autism and her complex communication system.  Which is demonstrated by my need to hold her hand. 

How it all started…….

Dozing on the settee after a hard day’s work my pager started to beep.  I woke up and phoned my transport department.   They had the call that Joyce was going into labour, and they were sending a vehicle round to our flat to rush me to the Berlin Military Hospital (BMH).  We were 10 months into a two-year tour of occupied Berlin, and it was still a couple of years before the ‘Wall’ was to come down.

Within a couple of hours our beautiful daughter Bettina had come into our lives.  It would be another 18 months before she was diagnosed with severe autism and a learning disability, but that didn’t matter to us (and still doesn’t) she is our beautiful daughter and love is enough.

So, what did we do?

  • We did our research to find out what resources were available to us as a family – even in the early 1990s as I have mentioned they were few and far between. 
  • We started pulling together those people around Bettina who loved her and wanted to be part of her life. We called this her “circle of support” – it was really her network.
  • We decided that traditional ‘reviews’ when it came to planning Bettina’s future was a waste of time. We wanted to do something which meant that Bettina would take centre stage and lead.  We wanted a person-centred planning meeting.  As there was no one to facilitate it from Social Services at the time as Bettina was in the transitional phase of the 16-19 age group where services dip,  I got off my backside and facilitated it
  • Bettina’s big sister, Jennifer, was our artist drawing and recording what Bettina and her Circle was telling us and we ended up with a PATH to her Vision to which everyone was signed up.
  • Joyce, the ‘Leader of our Gang’ and Bettina’s mum, then put it all into a Support Plan
  • From the Support Plan came the ‘Personal Budget’ and Bettina is now ‘living the dream’.

Bettina’s support has taken us through five stages – our ‘Project Life Cycle’:

Stage 1: Coming to terms with a daughter with learning disabilities and finding ways and support to help her cope

Stage 2: Finding the right education

Stage 3: Supporting her through her transition from school to adulthood

Stage 4: Connecting her to a wider community that is not just her family

Stage 5: To have a great life now and after we are gone

Becoming a parent to a person with learning disabilities is unique.  It changed our lives – and mostly for the better.  Her family value the relationships we have built with those who have smoothed her path towards a fulfilling and rewarding life. 

Related:   ‘Being a Carer’ https://leadershipintheraw.org/2022/07/19/being-bettinas-dad-being-a-carer/

Bettina today – a valued member of her community. 

‘My Happiness Project – A Family Members Perspective’

Five reasons why I think this is initiative: is so important:

  1. Working in partnership with the family can fill the gaps in a person’s history – we all have a past and that forms our present. 
  2. By sharing: experiences, knowledge, capabilities, and learning from their childhood so they are not lost in adulthood.
  3. We can often easily attribute all of the persons habits and intricacies to a person’s learning disability and or autism and therefore not see the real person.  Perhaps the way a person acts is actually a family trait?  You may see this by spending time with a family.  I did with a person I supported many years ago.  After spending time with her mum (before she sadly passed away) I could see ‘Mary’ was just like her mum in the way she reacted to different situations, it had nothing to do with her learning disability.   
  4. By building trust with a family, it can go some way in rebuilding whatever went wrong in their earlier experiences of the social care experience and the education system.
  5. We believe Bettina leads a fulfilling life because those who support her pull together and work as a team.  We are all ‘Team Bettina’

I am delighted that Justin and Thera East Anglia are taking this initiative for the people they support and by sharing this project and article, I hope other agencies will do something similar for the families they work in partnership with.

Steve Raw

My Background:  After 24-year career in the Army, for the last 27 years, I have been supporting people with learning disability as:

  • A support worker
  • A ‘Community Support’ Team Leader supporting people who had been excluded from their day services and their community
  • A manager for a Registered Cared home and a Hostel
  • Area Manager for Registered Care, Nursing Care, Supported Living, Older Peoples Home, and a Mental Health Hospital
  • Regional Director for Supported Living
  • Director of Learning Disabilities for supported living, registered care, and a respite service
  • Managing Director for a national company which supports people with their money
  • A Citizens Advocate for a person with a learning disability
  • A school governor for a special needs school for children with a learning disability and autism
  • A Trustee for a Families Carers Centre.    
  • And Being Bettina’s Dad for 35 + years