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What families do
A father and his two children

... close families are very important to our well-being and happiness. To a child... with profound learning disabilities, their family also provides very significant levels of practical care and commitment, day by day, year by year. Research shows that, on average, these family carers carry out personal care tasks like washing, toileting or eating & drinking for between 7.5 and 10 hours daily.

PAMIS, 2011

Involving families (1)

Disabled children and their families face a unique and often challenging set of circumstances that demand a unique and sometimes specialised response from both the universal and targeted services that support them. It is essential that they are able to influence the design and delivery of services which should be responsive to their needs.

HM Treasury/Department for Education and Skills, 2007

Parents should be partners in providing personal/intimate care for their son/daughter so that their knowledge and understanding is shared (particularly important in the area of personal/medical care) and the child has continuity and consistency of support. Communication with families can establish the level of skills already achieved by the child and their likes and dislikes.

Involving families (2)
A review meeting in progress

Carnaby and Mallet (2006) suggest that collaboration between schools and parents may involve:

  • Developing their son/daughter's health care plan/protocols.
  • Telephone conversations.
  • Modelling personal/intimate care tasks for staff.
  • Delivering staff training.
See also the module Talking to Families; Listening to Families.

What parents may feel

Trust is more likely to be developed when effort is put into building open and transparent communication around the child's needs, giving the parent or carer opportunities for sharing their concerns and anxieties as well as providing key information about the nature of support required.

Carnaby and Mallet, 2006

Parents may have mixed feelings around others providing personal and intimate care for their son/daughter including
(Carnaby and Mallet, 2006):

  • Guilt about not coping.
  • Concerns about intimate and personal care being provided in the right way.
  • Worries about abuse.

Ongoing communication with parents
A mother attending a review meeting

In communicating with parents, staff need to understand their personal, cultural and religious preferences and take account of these. Parents' confidentiality and dignity needs to be respected, and staff must be aware of school policy on sharing personal information.

Ongoing communication with families may be via a home-school diary for non-sensitive information (e.g. what the child or young person has eaten/drunk, seizures (if typical), etc., as well as achievements). However, communication about significant or sensitive issues should be by telephone, sealed letter or personal contact as appropriate.

The Highland Council Integrated Children's Services, 2009

Parental consent
A girl has physiotherapy on her leg

School policies will describe the need to have signed consent from parents before carrying out certain activities/interventions on their behalf for their son/daughter, including:

  • Administration of medication and medical/health procedures (including formal assessments, allied health professional involvement, etc.)
  • Personal and intimate care.
  • Physical restraint.
  • Other interventions in which there is significant physical contact (eg hydrotherapy, massage, etc.)
  • Disclosure of personal information.
  • Sexuality and relationship education.
School policies will contain guidelines on how and when to record physical contact.

The home context
A boy being lifted in a hoist

It is not always possible for families to work to agreed targets or allow time for children to achieve tasks independently alongside other family demands.

While parents need to be fully informed and comfortable about procedures at school they may manage some aspects differently at home (e.g. staff MUST use hoists to lift children and young people, but parents may use other ways).

Some families find it difficult to contemplate particular interventions (e.g. a gastrostomy). The role of the school is to work closely with medical professionals to make the best decisions with the child and their family.

Proactive collaboration (1)

It is the responsibility of school staff to be proactive in developing collaboration with parents.

Listen to the audio clips of parents talking about the way they work with the school and then to a headteacher talking about work with families.

What strategies are mentioned in the audio pieces which support communication between the school and the family?

Proactive collaboration (2)

  • Parent (1)
    1:08
    A parent talking about the way they work with their child's school
  • Parent (2)
    1:10
    Another parent talking about the way they work with the school
  • Headteacher
    0:54
    A headteacher talking about their work with families
Find out more

Carnaby, S. and Mallett, A. (2006) Children and young people with learning disabilities: developing good practice in intimate and personal care provision. In: S. Carnaby and P. Cambridge (eds) Intimate and Personal Care with People with Learning Disabilities. London: Jessica Kingsley.

HM Treasury/Department for Education and Skills (DfES) (2007) Aiming High for Disabled Children: Better support for families. London: HM Treasury/DfES.

Find out more
Open book

PAMIS (2011) 'Family Support Service for children and adults with profound and multiple learning disabilities and their families' (leaflet). Dundee: PAMIS.


The Highland Council Integrated Children's Services (2009) 'Intimate care for children and young people: policy and guidance'.