159. We received evidence that the children of people with learning disabilities are more likely to be removed from their parents' care than the children of people who don't have learning disabilities.[258] Research suggests that this happens in around 50% of cases involving a parent with a learning disability.[259] The National Survey reported that 7% of the people that took part in the survey were parents, but only 52% of those people were looking after their children.[260]

160. Unless justified as a proportionate and necessary response to a risk to the child, or to others, compulsory removal of a child from the care of its parents poses a significant infringement of the rights of both the child and its parents, to respect for their family life (as protected by Article 8 ECHR). Although the State has a broad margin of discretion in taking individual decisions on the need for child protection measures, the European Court of Human Rights has stressed that decisions to remove a child must take into account the availability of help, such as additional educational support for children, and whether it would be more appropriate to provide additional support to a family rather than remove a child. The fact that a child could be placed in a more beneficial environment for his or her upbringing is not enough on its own to justify compulsory removal from the care of its biological parents. The Court will have regard to the positive obligation on the State to enable the ties between parents and their children to be preserved.[261]

161. The United Nations Convention on the Rights of the Child confirms that every child has the right not to be separated from its parents, unless separation is necessary to meet that child's best interests (Article 9). In this connection, the Convention on the Rights of the Child provides that the State:

[S]hall render appropriate assistance to parents and legal guardians in the performance of their child-rearing responsibilities (Article 18).

162. The UN Disability Rights Convention, although not yet ratified by the UK, makes similar provision and adds that no separation should take place solely on the basis that the parents of a child have a disability. State Parties to that Convention will have a duty to consider alternative care for the child within a wider family setting (Article 24(3)).

163. Social Services departments, courts and other public authorities working with parents with learning disabilities and their children are subject to the duty to act compatibly with the right to respect for family life, as guaranteed by Article 8 ECHR. The State has a positive, human rights based obligation to protect children from harm and to promote their development. However, any decision which impinges on the relationship between a parent with learning disabilities and his or her children could have very serious implications for the right to respect for their family life. In such circumstances, particular care must be taken to ensure that any restrictions on the development of ordinary family relationships must not only be in the best interests of the child, but must also be a necessary and proportionate response to the level of risk posed to the child or to its parents through continuing care at home. This assessment must take into account all of the relevant facts of an individual case, including the potential for additional support to meet the needs of the parents and the child.

164. The Minister for Care Services told us that "political correctness" should not prevent the removal of a child simply because a parent has learning disabilities. We agree that the assessment of whether a child should or should not remain with its parents is a complex one, requiring the careful consideration of many factors, including the best interests of the child and the rights of the child and its parents. We welcome the Minister's acknowledgement that, unless justified and proportionate in all the circumstances, removal of a child could pose a significant risk to the rights of the child and its parents to respect for family life.[262]

165. Unfortunately, we received evidence that decisions about the future placement of children of parents with learning disabilities are regularly taken without adequate information, arrangements or support being put in place to allow parents to demonstrate that they can look after their children satisfactorily. We were told that adult social services and children's services often did not work well together to ensure that families had the support that they needed. We were also told that:

• assessments were not accessible and did not test parents' abilities or support needs effectively.[263] For example, the British Institute of Human Rights told us about two learning disabled parents who were told their child would be removed because they could not relate to, or successfully care for, a robot baby provided by the local authority to "test" their parenting skills;[264]
• professionals often had negative or stereotyped attitudes about people with a learning disability and their ability to be parents;[265]
• information about parenting which is routinely given to parents without learning disabilities is not provided in an accessible way to new parents who have a learning disability;[266]
• support which parents with a learning disability may require to help them look after their children satisfactorily may not be available from local authorities, due to the application of increasingly narrow eligibility criteria for support by social services as a result of resource constraints.[267]

Access to support for parents with learning disabilities and their children

I have been talking to parents with learning disabilities all over the country. Many parents have told us about the injustice and heartbreak they have suffered. They have had their children taken away by Social Services in unjust practices. They told me that when they asked for support, they did not get any until it was too late.[269]

167. CHANGE told us that:

There should be more support and education for people with learning disabilities about sex, relationships, and parenting. This would mean that people would be more prepared for parenting, and so it would not be so easy for professionals to say their children should be taken away.[270]

168. The Foundation for People with Learning Disabilities said:

The Norah Fry Research Centre undertook a recent study on the experiences of parents with learning disabilities, which confirmed the poor support experienced by many. The findings are echoed in our work with community learning disability teams: members often report on the challenges of working with children and families teams that focus strongly on risk to the child and can be reluctant to invest in support to enable the parent(s) to be 'good enough'. Tight eligibility criteria can also limit the support community learning disability teams can offer. [271]

169. During the course of our inquiry, the Department for Health and the then Department for Education and Skills published new Good Practice Guidance on Working with Parents with a Learning Disability.[272] This guidance is aimed at professionals in health and social care. It provides examples of good practice, with a summary of relevant legislation and policy on how adult and children's services "should work together to improve support to parents with a learning disability and their children". We welcome the acknowledgement in the Government's Good Practice Guidance on Working with Parents with a Learning Disability that people with learning disabilities "have the right to be supported in their parenting role, just as their children have the right to live in a safe and supportive environment." We also welcome the acknowledgement that while children have the right to be safe from harm, children's needs are usually best met by support for their parents, to look after them.

170. The recommendations in the Good Practice Guidance are "underpinned by current legislation and statutory guidance for both children's and adult's services and by disability discrimination legislation". We are encouraged that the Guidance acknowledges that it is "intended to assist local authorities to fulfil their disability equality duty to promote equality of opportunity for disabled people". Unfortunately, neither the Guidance nor the explanation it provides of the statutory framework and the obligations of local authorities, clarifies either public authorities' duties to act compatibly with the right to respect for private and family life; or the balance that must be struck to justify any interference with that right (i.e. an explanation of the duty under Section 6, Human Rights Act 1998).[273] The Guidance sets out five features of good practice in working with parents with learning disabilities: accessible information and communication; clear and co-ordinated referral and assessment processes and eligibility criteria; support designed to meet the needs of parents and children based on assessment of their needs and strengths; long-term support if necessary; and access to independent advocacy. We consider that if the recommendations for good practice in each of these areas were implemented effectively, this could significantly reduce the risk that parents and children would be separated, in breach of the Convention.

171. Despite the positive approach advocated by the Good Practice Guidance, barriers to the effective support of parents with learning disabilities may well remain in place. We are concerned that successful support depends not only on effective dissemination of the Guidance by central Government but also its effective implementation by local authorities, NHS Trusts and others. The Working Together with Parents Network told us that they remain deeply concerned that the rights of parents with learning disabilities and their children to a family life, as provided by Article 8 ECHR, will continue to be infringed.

172. They explained:

There are currently no plans from the Department of Health/Department for Education and Skills to run any events to ensure that information on the guidance is well disseminated to professionals who should be implementing it in practice.

173. They were also worried about funding:

We are aware that…at least one of the examples of good practice we cited…has closed because of funding problems. Given current pressures on local authority budgets it seems all too likely that this situation will be replicated elsewhere.[274]

174. We asked the Minister for Care Services and the National Co-Director for Learning Disabilities about the Government's plan to ensure that the Good Practice Guidance would be implemented effectively. The National Co-Director for Learning Disabilities told us that the Good Practice Guidance was initially being disseminated through a series of conferences run by an independent parents network.[275] The Working Together with Parents Network told us that these conferences were heavily oversubscribed.[276] The Guidance was also being disseminated through meetings of the Valuing People network; and distributed in paper and electronic formats. The National Co-Director for Learning Disabilities accepted that the Good Practice Guidance had been principally disseminated thus far to professionals working in adult services and that more work needed to be done to ensure that staff in children's services were aware of its recommendations.[277] The Minister for Care Services drew attention to the discussion of this issue in Valuing People Now, which we comment on, below [278]

Access to information for parents with learning disabilities

175. Some witnesses focused specifically on the lack of easy to understand information for people with a learning disability who had had, or were about to have, a baby. Witnesses were concerned that information that would otherwise be available to new parents was not routinely provided in an accessible format for parents with a learning disability, as should be the case under the Disability Discrimination Act. CHANGE told us that they produced a book for parents with learning disabilities, in Easy Read, called You and your baby, which had been funded by the Government. They had been told by the Department of Health that once the current print run has been distributed, no more copies will be printed. CHANGE also produce books for parents with learning disabilities who have children aged 1-5 years. Although they received government funding to produce the books they "get no support with how to distribute them for free".[280] We asked the Minister for Disabled People whether the Department of Health, a local PCT or other public authority would be in breach of its duty to make reasonable adjustments under the Disability Discrimination Act, if it failed to provide parents with learning disabilities with accessible information like the usual parenting material that was routinely distributed to non-disabled parents. We welcome the Minister's recognition that:

[U]nder the Disability Discrimination Act the provision of information such as this is likely to be seen as a service to the public. The duty is to make reasonable adjustments to enable disabled people to access that information…A reasonable adjustment might be the provision of an Easy Read version, but equally it might be somebody providing the information verbally.[281]

176. We welcome the Government's commitment in Valuing People Now to more appropriate support to parents with learning disabilities over the next three years. Nationally, it proposes:

• to take action to ensure that the Government's programmes of work aimed at supporting parents generally, and those aimed at groups of parents having particular difficulties, for example, the Family Pathfinders initiative, are inclusive of parents with learning disabilities;
• to ensure that information aimed at parents by the Department of Health and the Department for Children, Families and Schools is available in accessible formats;
• that the Care Services Improvement Partnership will work with the relevant Government departments and the Working Together [With Parents] Network to disseminate the Good Practice Guidance, particularly to children's social care services and mainstream health services;
• locally, it proposes that adult and children's services, supported by local learning disability partnerships, will work together to implement the Good Practice Guidance.[282]

177. We welcome the recognition in Valuing People Now of the need to do more to improve support to parents with learning disabilities and their children. But we remain concerned that there are few concrete proposals for action or measurable targets regarding improving support to parents with learning disabilities and their children in that document.

178. Although we welcome the commitment of the Department of Health and the Department for Children, Schools and Families to the provision of information in an accessible way, the Minister for Disabled People has accepted that it is likely that this commitment is no more than the Disability Discrimination Act already requires of those Departments.

179. While we recognise the potential of the Good Practice Guidance to improve support for parents with learning disabilities and their children, its effectiveness will depend entirely on positive dissemination and widespread implementation by local authority adults' and children's services, NHS Trusts and others. We are disappointed that the active dissemination of this important Guidance has so far relied principally upon the work of an independent parenting network, albeit supported by the Office of the National Director and his colleagues. We welcome the proposed involvement of the Care Services Improvement Partnership in further dissemination of the Guidance. We call upon the Government to set out clearly its proposals for ensuring that all local authority social services departments, including children's services and NHS Trusts are aware of the Good Practice Guidance and, importantly, that relevant professionals have training in its effective implementation.

180. We note that although Valuing People Now refers to the need for independent advocacy for parents with learning disabilities, it makes no proposals for action to ensure and increase the availability of such provision. We call upon the Government to take action on this issue in our discussion of advocacy in Chapter 8 below.

181. We consider that the proposals for monitoring progress in Valuing People Now are particularly weak and lack precision. Public authorities have binding duties under the Disability Discrimination Act and the Human Rights Act to provide services without discrimination, to implement effectively their positive duties to disabled people, and to uphold the rights of parents with learning disabilities and their children to respect for their private life. In the light of these duties, we recommend that the Department of Health requires Learning Disability Partnership Boards to report annually on local commissioning of services to support parents with learning disabilities; and ensures that data is collected locally on the numbers of parents with learning disabilities supported by community teams for people with learning disabilities, and the numbers of their children taken into care, each year.

257   Ev 120. Back

258   Ev 113 . Back

259   Ev 114. Back

260   The National Survey, Page 71. Back

261   Kutzner v Germany, [2002] 35 EHRR 25, paras 65 - 82. In this case, the European Court of Human Rights considered the removal of parental responsibility for their daughters from a couple with learning disabilities. In this case, the children were placed in two separate foster homes, despite evidence that that the parents were capable of meeting their childrens' needs with support. Although existing levels of educational support had been inadequate to meet the needs of the children, the State had not considered whether greater levels of support could be appropriate. The Court also considered that the parents had very limited opportunities for visitation and that the children had been independently placed with different foster parents. The Court considered that although the State has a wide margin of appreciation in relation to individual decisions on child protection, that in this case, the State had acted in breach of Article 8 ECHR.  Back

262   Q 215. Back

263   Ev 114-16, 131. Back

264   Ev 131. Back

265   Ev 150, 314, para 6. Back

266   Ev 152. Back

267   Ev 150, 314, para 6. Back

268   Ev 236. Back

269   Q 83. Back

270   Ev 153. Back

271   Ev 216, para 34. See also Ev 223. Back

272   Good Practice Guidance on Working with Parents with a Learning Disability, published 1 June 2007. This document is only available online: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_075119. Back

273   Although the Guidance refers to the parent's right to respect for private and family life, it gives no explanation of the scope of that right, or justified and proportionate interferences in the interests of the child. There are no express references to the right of the child to respect for his or her family life. Back

274   Ev 315-16. Back

275   Q 139. Back

276   Ev 315-16. Back

277   Q 139. Back

278   Q 271 Back

279   Ev 119. Back

280   Ev 152. Back

281   Ev 404. Back

282   Valuing People Now, Section 12.4. Back