The words we use

In this Toolkit we use learning difficulty rather than learning disability. This is because this is the term the people in the London Network of Parents with Learning Difficulties prefer.

When we say learning difficulties we are talking about everyone who has a learning disability or a learning difficulty.

Guide to the introduction

Use the links below to find the different sections of the introduction on this page

What is the Toolkit and who is it for?

  • This Toolkit is to help services meet our needs as parents with learning difficulties.
  • It has been made by the London Network of Parents with Learning Difficulties. This is a network of parents and workers.
  • The Network has been meeting for about 6 years. It brings together parents with learning difficulties and workers working with them.
  • The group shares our own stories, ideas and examples of good and bad ways of working.

Our values

We believe that parents with learning difficulties:

Mother doing activity with daughter
  • can be good parents
  • deserve to be treated with respect
  • deserve to be offered the support and services we need to be the best parents we can be
  • should be able to be part of society

What is the Toolkit for?

Meeting table and chairs
  • This Toolkit is for Partnership Boards
  • The Toolkit helps Partnership Boards look at the support and services that are offered to parents with learning difficulties. It helps them to check how good they are.
  • The Toolkit aims to make sure that services are high quality and really meet the needs of the parents they are meant for.

‘Valuing People’ and the Toolkit

Cover of Valuing People document

This Toolkit is based on the values and ideas about parents with learning difficulties that are in Valuing People (2001). Valuing People says this:

“The number of people with learning disabilities who are forming relationships and having children has steadily increased over the last 20 years. Parents with learning disabilities are amongst the most socially and economically disadvantaged groups. They are more likely than other parents to make heavy demands on child welfare services and have their children looked after by the local authority.

“People with learning disabilities can be good parents and provide their children with a good start in life, but may require considerable help to do so. This requires children and adult social service teams to work closely together to develop a common approach. Social services departments have a duty to safeguard the welfare of children, and in some circumstances a parent with learning disabilities will not be able to meet their child's needs. However, we believe this should not be the result of agencies not arranging for appropriate and timely support.”

Cover of the easy read version of the Valuing People Now Booklet

Valuing People Now came out in 2009 and it says more about parents with learning disabilities.

It says:

  • People should have the choice to have relationships, become parents, continue to be parents and be supported to do so.
  • Services need to support parents with learning disabilities. At the moment parents do not get the support they need and are therefore at risk of enforced separation.
  • Adult and children's services need to work together effectively so that we have an integrated system to support people.
  • People should receive good support from all mainstream family services, should have access to advocacy and the same level of information and advice as everyone else.
  • Valuing People Now expects all Partnership Boards to make sure that parents with learning disabilities have accessible information and services and that individual budgets are used to support families.
  • The Government has also written Good Practice Guidance on working with parents with learning disabilities (2007) for professionals.
  • We have read Valuing People and Valuing People Now and thought about what the government is saying about parents with learning difficulties.

The Government says:

  • Parents with learning difficulties are often hard up, and isolated.

Parents say:

Twenty pound note
  • The benefits system is too confusing.
  • We might need advice to get the right benefits.
  • If our benefits are cut, we need time to get used to less money.
  • There should be more groups and clubs for parents with learning difficulties.
  • We need groups with crèches.
  • Groups have to fit in with picking our children up from school.
  • We need groups that are local, or that have a minibus.
  • We need groups to help us to be confident and speak up for ourselves.

The government says:

  • People with learning difficulties can be good parents. They might need more support than other parents.

Parents say:

Large residential house
  • We agree, but it's hard to get the right support.
  • Some of us want more help and can't get it. Some of us don't want help but are put under pressure to take it.
  • Some parents are scared to ask for help, in case services think that we can't cope.
  • Some of us need support before the baby is born.
  • It's good to get support at the start, not when things are breaking down.
  • Support should be there long term if we need it, not just for a couple of weeks.
  • It's hard to get practical help because it costs money.
  • Housing is a big issue. A housing support worker can help us get what we need.

The government says:

  • Lots of parents with learning difficulties have their children taken into care. This should not be because they aren't getting the right support from services.

Parents say:

Father holding child
  • Some families don't get the right support from the start.
  • Some parents are told they will get the services they need, if their child is on the 'at risk' register. They should get the help anyway.
  • Being assessed to see if we have enough parenting skills can be very stressful. Assessments may look at all the bad things and not the good things we can do well. They should help us to learn the parenting skills we need.
  • Assessment workers should know about the needs of parents with learning difficulties.
  • Some workers are prejudiced about us. They think that people with learning difficulties can't be good parents.
  • We want to be given the chance to prove that we can be good parents.
  • We want to be clear about what we have to prove, and not keep having to prove more and more.
  • We want to be sure that what we say is listened to and not taken the wrong way.

The government says:

  • Support for parents with learning difficulties is not good enough everywhere yet. Services for the child and services for the adults don't always work together to help the family.

Parents say:

Woman on the phone
  • Communication isn't good between the services. It might help if they shared the same office.
  • Services need to sit down together around a table with the family.
  • We want to choose what support we get.
  • It's hard when you always get a duty social worker and it is a different worker each time.
  • Some adults teams won't give you a service unless you have an intelligence test. Services should not have their heads stuck in the past.
  • Some parents would like practical help, to read letters, or support to go on holiday.

The government says:

  • The government will give workers more training to make sure parents with learning difficulties get the help they need.
  • The government will include the needs of parents with learning difficulties in all their future plans to make parenting better.

Parents say:

  • How can we make sure that the government makes things happen?
  • They need to understand the different kinds of support parents with learning difficulties need.
  • They need to be active, not reactive.
  • Blank CD
  • The training should help them understand how to communicate with people who have learning difficulties.
  • Use plain words with no jargon. Writing should have big print.
  • Information should be on tapes and CDs as well as leaflets.
  • Remember not all of us can read and write.
  • Make sure we have enough time.
  • School staff need this training too.
  • Don't talk over parents' heads at meetings. Include us properly!

The government says:

  • In every borough the Head of Social Services will be in charge of making sure that services work together to support families.
  • Partnership Boards will make sure that the right services are there for parents to use.

Parents say:

Cover of 'Finding the Right Support' booklet
  • We need to know more about Partnership Boards.
  • Meetings should include us.
  • They must remember that some people with learning difficulties are parents.
  • Social Services should have people with learning difficulties working for them.
  • We want to get away from labels like ‘mentally handicapped’ - we don't want to have to use our labels to get what we need.
  • The Heads of Social Services should set up conferences to meet people with learning difficulties and listen to us more.
  • This Toolkit is also based on the values and beliefs about parents with learning difficulties that are in the report Finding the Right Support (Norah Fry Research Centre, 2006, pdf document).

Using the Toolkit

  • Mountain image from the Parenting Toolkit We want to make sure that this Toolkit is easy to use for as many people as possible.
  • It has a picture of a mountain for each area so that people can say how well services are doing. This link takes you to a page about how you can use the mountain.
  • Parents with learning difficulties have helped to make this Toolkit to make sure that it is accessible.
  • Parents have been paid for the time they have spent on this Toolkit, the same as workers.