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Keeping in Touch with Home - new report from the CBF and Mencap

New report reveals how families face significant barriers keeping in touch with children who have a learning disability living away from home

 

A new report, Keeping in Touch with Home, reveals the significant barriers families can encounter in trying to keep in touch with children in residential placements.

The report is the first time guidance has been issued on how residential settings should ensure parents can keep in touch with the thousands of children and young people with a learning disability who often live hundreds of miles from home during their childhood and adolescence in specialist residential placements. These placements could include residential special schools or colleges, mental health assessment and treatment units, and children’s homes.

The report, produced by the Challenging Behaviour Foundation and Mencap is based on research with families whose children are in residential placements. Their children (some now young adults) have complex needs, limited verbal communication and behaviour described as challenging.

The report reveals several criticisms from parents including:

  • Parents being asked to stay away when their child or young person started in a new setting
  • Parents not being kept informed, for example about changes in medication or hospital visits.
  • Staff applying blanket policies meaning helpful visual technologies such as Skype could not be taken advantage of.
  • Some placements decided to respond to family criticism by limiting visits and communication with parents.

These parents were distraught at being shut out as they saw their young person’s health and behaviour deteriorate.

 

One father commented:

“It’s always in the back of your mind when you complain…They’ve got your daughter there and you’re not there. If you are starting not to trust them, it’s a very slippery slope.”

 

A family carer who was involved in the report said:

“When staff, for whatever reason, do not promote the importance of family and home contact, alarm bells should ring. We have experienced being placed very firmly, not just on the sidelines, but virtually out of the picture altogether. When that happens, we must ask ourselves “What is the problem? What are they trying to hide?”

“Our daughter’s current support workers fully understand the importance of her keeping in touch with home, and they work to maintain that contact, calling or texting us regularly, even if just to offer reassurance. On occasions, they even come in on their days off, if they know we will be there.

“It can be no coincidence that she is so much happier, and more settled than she has been for a long time.”

 

However, it is possible to plan, arrange and deliver good communication between children and their families and some services have achieved this with good outcomes for all.

Commissioners and providers should use this resource so that effective support for keeping families in touch becomes normal practice rather than the exception.

 

The full report covers:

  1. Learning from families. Families’ vision of the support and attitudes needed to help them keep in touch and a summary of their experiences
  2. Learning from local practice. Case studies from settings which show much commitment to helping their young people to keep in touch with home and keeping families well informed and involved. ‘Good practice’ checklists.
  3. The legal framework. An overview of legal rights and duties around keeping in touch with family and involvement in decision-making, covering human rights, education, social care and mental health legislation and guidance.

 

The reports can be downloaded here:

www.pavingtheway.works/whats-new/keeping-touch-home

 

Comments from the CBF and Mencap:

“The shock of separation” – a powerful expression used by a parent to express their experience  was referred to by James Robinson of Mencap and Jacqui Shurlock of the CBF. In a joint statement they explained that it is “devastating for families when a child or young person with a learning disability has to live away from home. Even the most committed of parents struggle to maintain a strong relationship with a child who has limited communication skills, living on the other side of the country.

“Family bonds matter so much to all children, especially to those who rely on their parents and siblings to understand and communicate their needs and preferences.

“Keeping in touch should be a clear focus in children and young people’s care plans, not an after-thought. Children with learning disabilities shouldn’t have to live away from home, but if they must, then their right to family life must be supported and promoted.

“We urge central Government, Local Authorities, health commissioners and residential settings to follow the recommendations made in this report to drive much-needed improvements in practice.”

 

-ENDS-

 

For further information or to arrange interviews, please contact the Mencap press office on 020 7696 5414 or media@mencap.org.uk or for out of hours 07770 656 659.

 

Notes to editors

 

1. Human rights legislation

  • The UN Convention on Rights of the Child (UNCRC) establishes the right of children ‘to know and be cared for by his or her parents’ (Article 7).
  • The European Convention on Human Rights (ECHR) states that everyone has the right to respect family life (Article 8).

2. How many disabled children are in residential placements?

Over 6000 children board in residential special schools

Over 2000 young people attend specialist colleges on a residential basis

Around 165 under-18s and 725 young adults (aged 18-25 years) are in-patients in mental health assessment and treatment units (ATUs)

An unknown number of disabled children (probably in the low thousands) live in children’s homes.

 

About The Challenging Behaviour Foundation

The Challenging Behaviour Foundation (CBF) is an independent charity providing information, support and workshops around challenging behaviour associated with severe learning disabilities to families and professionals. The CBF leads the ‘Challenging Behaviour National Strategy Group’ which seeks to influence policy and practice nationally and has developed the Challenging Behaviour Charter.

The Challenging Behaviour Foundation was founded in 1997 by Vivien Cooper, parent of a son with severe learning disabilities who displays behaviour described as challenging. Today the Challenging Behaviour Foundation is in regular contact with over 5000 families and professionals across the UK. There are an estimated 30,000 individuals in England with severe learning disabilities and behaviour described as challenging.

 

About Mencap

There are 1.4 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want.

www.mencap.org.uk  

For advice and information about learning disability and Mencap services in your area, contact Mencap Direct on 0808 808 1111 (9am-5pm, Monday-Friday) or email help@mencap.org.uk

 

What is a learning disability?

A learning disability is a reduced intellectual ability which can cause problems with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life.

People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example, someone with a severe learning disability might need much more support with daily tasks than someone with a mild learning disability.

Learning disability is NOT a mental illness or a learning difficulty. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’.

“the shock of separation” – a powerful expression used by a parent to express their experience was referred to by James Robinson of Mencap and Jacqui Shurlock of the CBF.   In a  joint statement they explained that it is “ devastating for families when…”

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