Support that produces good outcomes for parents with learning disabilities

Parents with learning disabilities are too often disregarded by statutory agencies, but, reports
Gordon Carson, with the right support, their children can flourish in their care

Jane* had her two children removed from her care four years ago. She has learning disabilities and claims she was never properly assessed by social workers. The outcome for her family could have been very different if more tailored support and accessible information had been available following the birth of her children, she says.

The 2001 Valuing People strategy acknowledged that people with learning disabilities “can be good parents but may require considerable help”.

A decade on, campaigners still believe social services can do more to support parents with learning disabilities.

Philipa Bragman, director of Change, a Leeds-based human rights organisation for people with learning disabilities, believes there may be an attitudinal problem in social work, with many social workers – particularly those in children’s services – holding prejudices about the ability of people with learning disabilities to parent.

The starting point for services should be recognising that, with some help, parents with learning disabilities can bring up their children, says David Congdon, head of campaigns and policy at Mencap.

“The issue should not be whether you are a great parent, it’s about whether you are a good enough parent,” he says.

Statistics on parents with learning disabilities are few and far between. But a 2005 government-commissioned survey of the lives of learning disabled people found that just 52% of parents looked after their children.

Eligibility criteria

Bragman says those adults with learning disabilities who do become parents can be disadvantaged by eligibility criteria for adult social care that sometimes only make services available to clients with a lower IQ.

Most people with learning disabilities who become pregnant will “fall above that IQ level”, which is often set around 70, says Bragman.

Her point is backed by Alex Fox, chief executive of Naaps, which represents small community providers such as Shared Lives schemes (formerly adult placements).

Fox says that, under government guidance on eligibility for adult care, parents with learning disabilities will often have critical needs, on the basis that “vital family roles cannot be undertaken” without support.

The key issue in eligibility assessments is “likely to be whether the parent, and in most cases the mother, has a sufficient degree of learning disability to meet the eligibility criteria of the specialist team involved”, says Andrea Pope-Smith, joint chair of the Association of Directors of Adult Social Services’ learning disability network.

If a parent is deemed ineligible for services, Pope-Smith says learning disability teams should offer advice and guidance, and point them towards other sources of support.

Nonetheless, there is still a feeling that parents with any form of disability are not always given high priority by social services, says Steve Moore, secretary of the Black Country branch of BASW – The College of Social Work.

Funding responsibility

While social workers in adults’ services may look to promote parenting skills, he says managers often try to shift responsibility for funding to children’s services in cases where children qualify as “in need”.

However, there are also concerns that increasingly risk-averse children’s services are often unwilling to give parents with learning disabilities the time and support required to improve their parenting skills.

Therefore, specialist support organisations may be best placed to help parents.

One option is Shared Lives care, where individuals and families provide care for adults with additional support needs, often from their own homes, meaning they can establish close and consistent relationships.

As a support service for adults, it could be made available to help parents with learning disabilities improve their parenting skills if they still have custody of their children.

“A parent who might be struggling with their parenting might live with a Shared Lives carer for a period then move back to their own place but continue to stay with the carer every weekend,” Fox says.

He admits, though, that there is a need for rigorous academic research to see if the evidence supports his belief that Shared Lives schemes can achieve positive outcomes for large numbers of parents.

In some areas, intensive family support services are working to improve the parenting skills of people with learning disabilities. These include a service run by the charity Family Action in Leicester (see case study), and the Valuing Parents Support Service, based in Gillingham. This was set up in 2009 and is jointly funded, and takes referrals from, Medway Council’s children’s and adults’ services.

Social worker Rosie Sturge says it supports the whole family by allocating a parent support worker to help parents meet their children’s changing developmental needs, as well as helping adults to meet their own needs.

Valuing Parents is currently working with 26 families and also links with other services in Medway, including Shared Lives. In some cases parents are living with and caring for their children, but in others the children may be living with grandparents, or in foster placements.

Service evaluation

The service is also being evaluated by Bristol University’s Norah Fry Research Centre. Sturge says it has already had a positive impact in some cases by, for example, enabling children to come off child protection plans.

Parents with learning disabilities may not always require this sort of intensive support, though. Change’s Bragman says more simple tools can often enable people with learning disabilities to improve their parenting skills.

Change produces accessible books for parents with learning disabilities, but these are only distributed in some areas. While NHS Scotland says every parent with a learning disability is entitled to receive a Change parenting book, Bragman says the situation in England is “really random”.

Gary*, who has learning disabilities and brings up his three children with his ex-partner, says this type of jargon-free information is crucial for new parents.

“You need to ask parents the best way to communicate with them,” he says. “People with learning disabilities can be very good parents if they get the right support from the start.”

* Not their real names

Case study: combating isolation

Family Action’s Valuing Families service in Leicestershire provides a lifeline for parents with learning disabilities who feel isolated. Nayna Mistry, a family support worker at the service, says many parents are not known to adult social care and may “find it difficult to understand there are services out there for them”.

Lisa’s story shows just how important this support can be. She is clear that help from Valuing Families has enabled her to develop the parenting skills to care for her twin daughters, aged 16 months.

Though she and her partner, John, have never been assessed as having learning disabilities, they have been receiving support from the charity after a referral from a health visitor who felt they were having problems learning about their daughters’ development.

They had been staying with parents but have been living independently since before Christmas, after being assessed as eligible for their own house.

“It’s been great having Family Action,” says Lisa. “They come around to our house and ask if we need any help, and they’re great at providing information. We do our best being parents but they help out. There are some things I don’t know that they put right.”

More on Valuing Families

Tips for practitioners

● Start from the position that people with learning disabilities can be good parents if they receive the right support and information.

● Provide information in accessible formats from before birth, such as advice booklets produced by the charity Change.

● Develop joint protocols with children’s services defining how you will work together to support learning disabled parents.

● Recognise that where “vital family and other social roles and responsibilities cannot or will not be undertaken”, an adult has critical care needs, under government guidance, and is eligible for support.

Tips from Philipa Bragman, director of Change, Alex Fox, chief executive of Naaps and others. 

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