3000 lives: Active support for families

Founder members of Justice Together  – Respond and Bringing Us Together – racked their brains to find a solution for families whose child or young person was facing a placement in an ATU.  Liz Gow of Respond and Debs Apsland from Bringing Us Together describe how Justice Circles work.

Justice Circles came about in direct response to the preventable deaths of Connor Sparrowhawk and Thomas Rawnsley.  The founder members of Justice Together were racking their brains trying to think about what would be the best possible support to put in place for families whose child or young person with autism and/or learning disabilities was facing a placement in an Assessment and Treatment Unit (ATU) or similar facility.

Parents of a young person with autism and learning disabilities are desperate to avoid their child going into an ATU and for those whose family member does end up in one it can be very difficult to get them out again. Families have been actively seeking support and are known to Bringing Us Together and Respond.

Justice Circles

A Justice Circle is a specific model of support we are beginning to develop around the families of people with learning disabilities in crisis. The model so far has been devised by Bringing Us Together, Respond and the rest of the Justice Together team.

Many of the families that we come into contact with have been inadequately supported, neglected or have even experienced abuse from the services supposed to provide support to their family member. In some tragic situations this has led to the death of the person with learning disabilities.

When the families approached us, we offered them an initial assessment in the form of a one-hour telephone call to provide more details about their situation and how they would best be supported. We guided them to the information they needed either through the internet or by sharing our trusted contacts with the relevant knowledge in other organisations.

As a result the families have been able to access the most appropriate practical help (with the Mental Capacity Act, Mental Health Act, solicitors, housing, etc) promptly and without having to spend time searching the internet without really knowing what help they actually need.  When they are in a crisis searching for this practical help is often beyond the capacity of a family. We have also offered the families much needed emotional support, either through our helpline – as and when required – or with a case worker. We have found that keeping the practical and emotional support separate benefits everyone but obviously this needs to be sustainable with adequate funding.

The families who choose to access emotional support are offered weekly one hour therapy sessions with a qualified therapist.  This is either over the phone or face to face at Respond’s clinic.  As we progress, we have been helping the families to build a circle of support.  In the future, we would hope to offer all new referrals access to a circle of support from the start of the process. We believe it is vital to draw on the experience and expertise of many individuals and organisations to help support the families.

What is needed?

We have learned from families that what would help them is a staged process of support:

  • A resource database, where families can get quick and easy information about relevant information, eg. mental health legislation, legal advice on the internet, information at the click of a button without having to search through the internet which can be time consuming and stressful. (We are currently working on developing this – justicetogether.org.uk – however, funding will be required to ensure this is kept up to date and relevant).
  • If families are unable to find what is needed on the internet, the next stage is to call our specialist helpline. This would be a free advocacy helpline staffed by a team of trained volunteers, offering signposting, advocacy and weekly phone calls on a regular basis to those affected by institutional abuse and ‘death by indifference’. This will need to be co-ordinated by a paid member of staff but will be staffed by trained, highly skilled, professional volunteers.
  • The next stage if needed would be to set up a Circle of Support; this would be coordinated by one specific person. The circle itself is a combination of virtual support from a skilled group made up of professionals and family members plus some face to face advocacy support for meetings and writing letters or deciphering and responding to documents such as reports. This both ensures that families and their family member’s voices are heard as well as providing sound information and advice.
  • For some families to regain their emotional equilibrium and strength to support their son or daughter the next stage they could access would be a specialist counselling service. They would be offered weekly one to one counselling sessions, in person or on the phone, with from someone separate to the people who make up the justice circle.

The benefits of Justice Circles are clear for the families, for Bringing Us Together and Respond and the other members of our Justice Together team.  With funding, Justice Circles have the ability to help families as they approach a crisis and to provide the practical and emotional support for families when they are in crisis.

Case study – a family’s fight for their son

Christine’s son James has been in an ATU around 250 miles from home for nearly three years. He has been on and off sections, constantly restrained, isolated, visits stopped, phone calls stopped, abused both physically and emotionally by care staff. He has not been out of the ATU grounds for days, activities have stopped or never put in place. He was also over medicated.

His family have fought tirelessly to get him removed from this ATU, where he should not have been placed in the first place (this is now being investigated). The family have involved solicitors, advocates, social workers and organisations, such as Respond, to help them to get their son removed.

They have managed, at great expense to their health, with the use of a Justice Circle,  to get a bespoke package set up for their son, a new care provider and a new home near to his family. He is due to move in the next few weeks.

His mum is worried about the effects of his trauma, having gone unsupported for so many years.  She is also concerned about the damage that has been done to their relationship as a family as they have not been encouraged to see or speak to him regularly (even though they do when they can and are able to drive to see him).

There are also great concerns that this may happen again and that he may end in another ATU far from home if another crisis happens and isn’t dealt with appropriately. Christine now has little, if any, trust in social workers; she is also wary of asking for help, from new people and professionals.