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Paving the Way

Early intervention for children with learning disabilities whose behaviours challenge

Our experience of a residential college

Pam, Rachael's mum posted on 06/10/17

Rachael, my daughter, is the middle child between two brothers. She has a rare genetic condition which presents as a severe learning disability, autism, an eating disorder and mild self-harm. As a child, Rachael lived at home, attended the local special school and went on family holidays abroad without incident.

When her brothers both went to university, we felt that a residential special college placement would help her gain independence and prepare her and us for a more independent lifestyle. My husband and I researched and visited colleges and chose the one that we felt was most suitable and closest to home. However, during and after her college years challenging behaviours arose and the self-harm intensified.

We had concerns about the residential special college early on as the college insisted that we had no physical contact with Rachael for the first half term. On top of this, they didn’t provide any regular communication with us and she cannot use a phone, so we were completely cut off.

We soon found that the college wanted to take Rachael as a blank canvas – she can’t talk and uses very few idiosyncratic signs, so communication is very difficult. However, they were not interested in finding out any useful information about her. We had wrongly assumed that the professionals at the college were experts.

A major issue during Rachael’s time at the residential college was the lack of communication from the college. They held annual reviews without telling us about escalating behaviours or their inability to deal with them. They didn’t look for triggers or take into account an accumulation of events causing an outburst, but mainly encouraged a blame culture. The college saw Rachael’s behaviour not as a desperate attempt to communicate at a very basic level, but as something to be punished and eradicated.

Overall, it seemed that the residential college didn’t understand our daughter’s needs and were unable to provide the support that Rachael required. Instead of moving on and becoming more independent she became fearful and less tolerant, quickly escalating behaviours at the slightest set back.

Our greatest regret is that we handed Rachael over to people we thought were professionals and they let us down. We feel that we also let her down because we allowed them to blame her, try to change her and punish her. When we finally withdrew Rachael there was no exit strategy or suggestions for future plans. When my husband went to collect her things the principal refused to see him and told his secretary to say he had washed his hands of her!

The Lenehan review of Residential Special Schools and Colleges is considering their future role. In the future, I think that residential special colleges could be useful to support the transition of young people to supported living in their community. Residential colleges could be valuable to understand how someone would be best supported as an adult, such as whether a shared or single home would suit them best.

To achieve this, the residential college would need to work closely with parents and others to understand the young person and develop clear and detailed personal plans for things such as communication and health needs. Positive Behaviour Support should be at the heart of all decisions and drive all strategies. Having a key worker who works closely with everyone would be valuable to ensure that these individual plans are jointly agreed and followed. The key worker would need to communicate regularly with parents and make sure that any problems are raised quickly and seek solutions before they escalate.

An approach where the college works with young people rather than dictating to them is also important. This can help students to discover what activities they enjoy and have a planned progression that is based on what each student needs. We found that Rachel’s care was too often based around the needs of the college. In her first year she lived in a group of four rooms with three staff members, but she was moved in her second year to live in a group of twelve rooms with two staff members. This was not because she had progressed, but because the new intake were all boys and that was the only way they could all fit in.

After college, Rachael spent ten years back in the family home. We worked hard and with some success at providing her with skills to communicate more effectively without having to challenge. She then tried living in a local residential home, but found sharing with nine other people too restrictive and her challenges re-appeared.

Rachael has now lived for six years in supported living in her own flat with 24 hour 1:1 care. Through the Challenging Behaviour Foundation we discovered Positive Behaviour Support and this approach has greatly altered her life for the better. She has a very detailed communication passport and staff are trained to use it and Positive Behaviour Support principles. We also find social stories using personal photos invaluable as a tool for helping Rachael cope with difficult but inevitable events, such as when her favourite carer went on maternity leave.

Rachael will always be Rachael and will struggle and challenge, but we feel we and her staff now have the tools to communicate with her much more effectively so that she now leads a very full and active life of her choosing in the local community.

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