Advice for disabled parents/carers

Parents with Learning Disabilities/Difficulties

What is a learning disability or difficulty?

Unless otherwise stated, information taken from talk by Beth Tarleton from the University of Bristol at the St John’s Chambers Fair Access seminar on 4th December 2014.

Mencap describe it in this way:

A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.

A parent with a ‘learning disability’ has a IQ below 70; a parent with a ‘learning difficulty’ has an IQ above 70, but both parents may struggle with the same difficulties. Often, mainstream services don’t have experience of working with adults with learning disabilities or learning difficulties [LD] and may not use specialist assessments.

There is little reliable data about how many parents currently face such challenges; there is an estimate of 53,000 in the UK with a diagnosed learning  disability. Dr Sue McGaw (1997) estimated there are 250,000 parents with learning difficulties known to health and social services agencies in the UK.

 

What challenges do parents face with LD in care proceedings?

Best Beginnings describe it in this way:

Many people who have a learning disability prefer to use the term “learning difficulty”.
A person with an IQ of less than 70 can be diagnosed as having a learning disability.
Around 7% of adults with a learning disability are parents, but most have a mild to borderline impairment, which may make it difficult to identify them as they will not have a formal diagnosis.
Around 40% of parents with a learning disability do not live with their children. The children of parents with a learning disability are more likely than any other group of children to be removed from their parents’ care.
Parents with a learning disability are often affected by poverty, social isolation, stress, mental health problems, low literacy and communication difficulties.

Parents with LD may suffer discrimination from professionals who have little relevant experience and who make assumptions about what parents with LD can or cannot do. This leads to parents with LD often fearing intervention from state agencies. The parents may perceive:

  • Opposition to their desire to parent
  • People assuming the pregnancy was a mistake
  • Assumptions that their parenting capacity won’t improve
  • Negative expectations/stereotypes about their parenting ability
  • Their learning difficulty is automatically equated with an inability to parent
  • People don’t given enough consideration to other environmental or social factors which could impact on parenting difficulties.

There is no consensus from research that children of parents with learning difficulties will automatically face poor outcomes; some studies find that children born to parents with LD are vulnerable due to poor parenting; other studies report that children can do well in the care of their parents if the parents are given support and help.

There needs to be a recognition from support services that parents with LD need life-long support and that support needs to be effective, making provision of information accessible to parents. Effective support services will:

  • cover the family life cycle and a variety of situations
  • offer a co-ordinated approach across services
  • be family-centred in approach and support children in their own right
  • provide accessible and understandable information about parenting
  • recognise the strong association between supportive social networks and the positive psychological well-being of parents with LD
  • include a range of services
  • assess/educate parents in their own homes and using their own equipment, wherever possible.

 

Useful resources

  • ‘Care Proceedings and Learning Disabled Parents: A Handbook for Family Lawyers’ by Abigail Bond. A handbook for all those involved in care proceedings where one or both of the parents is learning disabled. The book sets out the relevant governmental policy and guidance in this area; examines the statutory framework relevant to adult learning disability social workers and children s services social workers where there is a parent with a learning disability; considers and analyses the legal and practical arguments and issues likely to arise in learning disability cases.
  • Competency based assessment of support needs: PAMS 3.0 is a complete Parent Assessment Application used by social workers, psychologists and other professionals across the UK and abroad. Developed by psychologist Dr Sue McGaw.
  • Good Practice Guidance on Working with Parents with Learning Disabilities [DoH and DoE 2007] Includes 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. Requires updating, but much of guidance still relevant and helpful.
  • Working Together with Parents Network – supports professionals working with parents with learning difficulties and learning disabilities, and their children. Provides information and research about parents with learning difficulties, guidance, packs, toolkits and links to other organisations.
  • You may also be interested in this post on how the court should ensure proceedings are fair for parents who have a learning disability.
  • The Advocate’s Gateway -The Advocate’s Gateway gives free access to practical, evidence-based guidance on vulnerable witnesses and defendants. Their ‘toolkits’ provide advocates with general good practice guidance when preparing for trial. See for example the Toolkit ‘Case Management in young and other vulnerable witnesses cases‘
  • Communicourt – Provides intermediaries at all stages of the legal process, to ensure the vulnerable client has a fair hearing, understanding the process, being involved fully in decision making and able to respond to questions if appropriate.
  • Mencap -organisation with a  vision for a world where people with a learning disability are valued equally, listened to and included and for everyone to have the opportunity to achieve the things they want out of life. 

 

Further Research

 

Parents with learning difficulties, child protection and the courts

Professor Tim Booth from the University of Sheffield carried out research in this area which was published in 2004. He noted key features of professional practice and service organisation that undermined parents in their parenting and heighten their vulnerability. Parents with LD are disproportionately represented in care proceedings and have a high risk of having their children removed from their care. He noted the impact of ‘system abuse’ or setting up vulnerable parents to fail by depriving them of adequate support:

  • System abuse – meaning policies and practices that harm the families they are supposed to support or protect. System abuse is the unacknowledged scourge of families (see, for example, Booth and Booth, 1998, chapter 9). It is rampant, pervasive and destructive of family life…
  • Competence-inhibiting support – meaning support that deskills parents, reinforces their feelings of inadequacy and undermines their independence.

Parents with LD and advice about the law

There is also research from the University of Bristol in July 2013 ‘What happens when people with learning disabilities need advice about the law’ 

The report concluded that:

The research confirms the findings of previous research that access to legal services for people with learning disabilities remains problematic. The study adds detail and depth to our understanding of the barriers that they face, but also furnishes some of the potential solutions. It highlights the different needs of people with mild learning disabilities and those with more complex disabilities who rely on others to act on their behalf.

The report makes recommendations which centre on:

  • Developing accessible information for people with learning disabilities about the purpose of legal services and how they can be used;
  • Developing information and resources to clarify the routes that family carers and others can take to access specialist legal services on behalf of others;
  • Strengthening the awareness legal professionals have about learning disabilities through professional training and guidance;
  • The promotion of collaborative working between legal services and the social care sector.

 

The influence of ‘powerful others’

There is an excellent and informative article from the British Journal of Learning Disabilities about parents with learning disabilities and their experiences of having their children removed for not being ‘good enough’ parents. Its a useful reminder that there is no universal accepted definition of what exactly makes us ‘good enough’.

Thanks to Matt Harding for bringing this to our attention.

Accessible summary

  • People with learning disabilities might have their children taken from their care. If they do, what then happens to the parents?
  • I talked to nine mums who had their children taken away from their care. They told me about what this was like and how they felt.
  • This research gives advice to people (particularly professional people) about how to work better with mums who have had their children removed. It also shows that sometimes it is difficult for people with learning disabilities to know their rights and say what they think.

Abstract

There is a recognised risk of parents with learning disabilities having their children removed. Little research has investigated the impact of this on these parents. This article looks at the perceptions of nine mothers with mild learning disabilities and their experiences having had their children removed. Interview data were analysed using Interpretative Phenomenological Analysis (IPA). Findings reveal the struggles mothers with learning disabilities faced being ‘suitable mother’ – including presumed incompetence and scrutiny of parenting. Participants’ responses to having had their children removed are looked at and support reviewed. Finally issues of power were highlighted throughout Participants’ accounts and the impact of this is discussed. Clinical implications indicate areas for service improvement.

Conclusion

There appears to be an overwhelming influence of ‘powerful others’ upon the lives of mothers with learning disabilities. Before they even have a child, society seems to suggest they should not. When they do have their child, however, they appear to have to be better than ‘good enough parents’ and seem set up to fail by the standards of those monitoring them (Chinn, 1996 cited in Edmonds 2000). When the mothers do ‘fail’, powerful others remove the child. There seems little negotiation in this process. Few mothers appear to have advocates and the child is often then adopted –a decision sometimes not even made through court. To the mothers, the decision appears a foregone conclusion over which they have little control or choice.

What then do the mothers do? How do they cope? They are left feeling helpless and bereft. They could turn to others for help but past experience has taught them that this may not be beneficial. Moreover, for many mothers it might mean turning to those who removed their child in the first place. Should mothers reveal their true feelings it might only serve to prove it was right to remove their children. Worse still, it could support the removal of yet more of her children. The mothers’ voices and feelings therefore seem to remain hidden and they attempt to block out upsetting thoughts and reminders. It appears their only solace is that one day their child might return. Meanwhile any contact will suffice. However, all this once again appears to rest in the hands of powerful others.

 

 

Ehlers Danlos Syndrome

You may be interested in our post here about the issues around certain genetic conditions and accusations of non accidental injury or Fabricated or Induced Illness (FII).

Meeting at the Houses of Parliament

Justice For Families in collaboration with EDS UK is holding a Family Law Meeting in the Houses of Parliament on 24th June 2014, as a response to all the allegations of child abuse and FII reported in the EDS community.

Mr John Hemming MP and Lara Bloom, Chief Operations Officer for EDS UK, will host a gathering of professional minds to discuss Ehlers within Family Law and NAI’s.

The confirmed speakers so far are:

Professor Rodney Grahame

Professor of Clinical Rheumatology – Senior Consultant in Clinical Genetics – Extensive experience in complex cases involving allegations of serious non accidental injuries especially those concerning scientific or medical issues.

 

Dr Anand Saggar

Senior Consultant in Clinical genetics.

 

Paul Storey QC and Alexa Storey

Barristers with extensive experience in complex cases involving allegations of serious NAI.

 

Time and place

The event will take place on June 24th from 6.30 – 9.30 at the MacMillan Room at Portcullis House SW1A.

If you would like to go, please email Jacque Courtnage at jacque.courtnage@john.hemming.name

as attendance is by invitation only.

 

Advice for parents with mental health issues

I’m a parent and I have mental health problems and/or a personality disorder. What can I do to help myself?

You may also be interested in our post on parents with mental health difficulties in the ‘Mythbusting’ section.

Most people would agree that there is not an adequate amount of help available to parents with mental health challenges or a diagnosis of or the difficulties associated with personality disorder. Many parents feel very isolated, and often frightened. With feelings of isolation and fear can often come a sense of hopelessness or disempowerment. However, as a parent struggling alone with mental health issues, there is a great deal that you can do to help yourself;

  • Try not to panic about the involvement of Children’s Services. As the rest of this website explains, their main aim is simply to support you in looking after your children.
  • If you have difficulty understanding or following what is happening, ask your social worker, solicitor or advocate to explain.
  • Find out what support is available in your area and for people with your difficulties or diagnosis. Your GP, advocacy services, mental health charities and internet searches can be a good starting point. Do not assume that your doctor or social worker has already referred you to everything available – you may have found something they don’t know about.
  • Do not underestimate the value of family networks, informal support or social media. Think about what your family and friends can do to help. Try and get involved in your local community, perhaps by volunteering at your child’s school or by joining a local gardening club, or simply by looking for friends online through Mumsnet or Twitter.
  • Look after your health. Smoking, alcohol, illegal drugs and too much coffee and chocolate are bad for both physical and mental health. Exercise and plenty of water and veg and fresh air and friendship are good.
  • Look after your finances. Many families and particularly parents with mental health issues and other disabilities are seeing their incomes fall and outgoing rise due to benefit cuts, inflation and the bedroom tax. Citizens Advice and the Money Advice Service can provide excellent free advice. For those who are having trouble feeding their families, foodbanks can provide emergency parcels.
  • Learn to relax. Stress-management techniques can be beneficial to everyone, and people with mental health challenges have more stress factors than many. Mindfulness, self-hypnosis and other forms of relaxation can be learned from classes or from YouTube.
  • Enjoy your children. Certainly, parenting can be messy and stressful and tiring – but it can also be hugely fun and rewarding. Make time and save energy for trips to the park, finger paint and bedtime stories.
  • Stay positive. Trite and twee as it sounds, you have to believe that you will cope.

 

Court gives guidance on how to ensure fair proceedings for learning disabled parents

You may also be interested in this post about supporting parents with learning disabilities in care proceedings. 

In the case of Re A [2013] the Court of Appeal had ordered a retrial due to concerns that a father with learning difficulties had not had a fair hearing regarding findings that he had inflicted an injury on his child.

At the re-trial, Mr Justice Baker gave the following advice on how to conduct proceedings where a party is vulnerable due to a learning disability.

(a) There is duty on those acting for the parent(s) to identify their client’s need for assistance in responding to questions and giving instructions, which must be considered by representatives at the outset of their instruction.  Any need for support must be addressed at the earliest opportunity.

(b) When this is known prior to the outset of proceedings, on issuing, local authorities should draw the issue of competence and capacity to the court’s attention. In turn, on the day following issue, the court will give directions for the appointment of a litigation friend.

(c) When the issue of capacity and competence is not identified at the outset, it should be addressed fully at the case management hearing.  At that hearing, those representing the parents should apply for special measures, where the case for such measures can be made out without any expert advice. Alternatively, where expert advice is necessary to identify the existence or extent of the learning difficulties, they should make an application in accordance with Part 25 of the Family Proceedings Rules for an expert to carry out an immediate assessment of the capacity and competence of the party.

(d) The legal representatives should normally by the date of the case management hearing identify an agency to assist their client to give evidence through an intermediary or otherwise if the court concludes that such measures are required.  If the court is satisfied that an expert report is necessary to determine whether the party lacks capacity or competence and/or as to the extent of any special measures required, it may direct a further case management hearing to take place once the expert has reported so that detailed directions can then be given for the instruction of an intermediary and/or such other assistance as may be necessary.

(e) So far as funding is concerned, there is a distinction between the cost of obtaining a report from an expert as to capacity and competence, and the cost of providing services from an intermediary.  The former will, subject to the approval of the legal aid agency,whereas the latter, as a type of interpretation service, will be borne by the Court Service.  Those representing the relevant party should address these funding issues at the earliest opportunity.  They should obtain prior approval from the legal aid agency for the instruction of the expert and, as soon as possible, give notice to Her Majesty’s Courts and Tribunal Service that the services of an intermediary are likely to be required.

A further important case is Re D (No 3) [2016] where the President set out the following as an Annex to his judgment.

Extract from the judgment of Gillen J in Re G and A (Care Order: Freeing Order: Parents with a Learning Disability) [2006] NIFam 8, para 5:

“(1) An increasing number of adults with learning difficulties are becoming parents. The Baring Foundation report records that whilst there are no precise figures on the number of parents with learning difficulties in the population, the most recent statistics come from the First National Survey of Adults with Learning Difficulties in England, where one in fifteen of the adults interviewed had children. Whatever the figure it is generally recognised that their number is steadily rising and that they represent a sizable population whose special needs require to be adequately addressed. The Baring Foundation report refers to national policy in England and Scotland committing government to “supporting parents with learning disabilities in order to help them, wherever possible, to ensure their children gain maximum life chance benefits.” Nonetheless the courts must be aware that surveys show that parents with learning disabilities are apparently more likely than other parents to have their children removed them and permanently placed outside the family home. In multidisciplinary jurisdiction such as the Family Division, it is important that the court is aware of such reports at least for the purposes of comment. It is important to appreciate these currents because the Children Order (Northern Ireland) 1995 places an emphasis on supporting the family so that children can remain with them and obligations under disability discrimination legislation make public services accessible to disabled people (including parents with learning difficulties). Moreover the advent of the Human Rights Act 1998 plays an important role in highlighting the need to ensure the rights of such parents under Articles 6 and 8 of the European Convention of Human Rights and Fundamental Freedoms (“the Convention”).

(2) People with a learning disability are individuals first and foremost and each has a right to be treated as an equal citizen. Government policy emphasises the importance of people with a learning disability being supported to be fully engaged playing a role in civic society and their ability to exercise their rights and responsibilities needs to be strengthened. They are valued citizens and must be enabled to use mainstream services and be fully included in the life of the community as far as possible. The courts must reflect this and recognise their need for individual support and the necessity to remove barriers to inclusion that create disadvantage and discrimination. To that extent courts must take all steps possible to ensure that people with a learning disability are able to actively participate in decisions affecting their lives. They must be supported in ways that take account of their individual needs and to help them to be as independent as possible.

(3) It is important that a court approaches these cases with a recognition of the possible barriers to the provision of appropriate support to parents including negative or stereotypical attitudes about parents with learning difficulties possibly on the part of staff in some Trusts or services. An extract from the Baring Foundation report provides a cautionary warning:
“For example, it was felt that some staff in services whose primary focus was not learning difficulties (eg in children and family teams) did not fully understand the impact of having learning difficulties on individual parents’ lives; had fixed ideas about what would happen to the children of parents with learning difficulties and wanted an outcome that did not involve any risks (which might mean them being placed away from their family); expected parents with learning difficulties to be ‘perfect parents’ and had extremely high expectations of them. Different professionals often had different concepts of parenting against which parents were assessed. Parents’ disengagement with services, because they felt that staff had a negative view of them and ‘wanted to take their children away’ was also an issue, as were referrals to support services which were too late to be of optimum use to the family – often because workers lacked awareness of parents’ learning difficulties or because parents had not previously been known to services”.

(4) This court fully accepts that parents with learning difficulties can often be “good enough” parents when provided with the ongoing emotional and practical support they need. The concept of “parenting with support” must underpin the way in which the courts and professionals approach wherever possible parents with learning difficulties. The extended family can be a valuable source of support to parents and their children and the courts must anxiously scrutinize the possibilities of assistance from the extended family. Moreover the court must also view multi-agency working as critical if parents are to be supported effectively. Courts should carefully examine the approach of Trusts to ensure this is being done in appropriate cases. In particular judges must make absolutely certain that parents with learning difficulties are not at risk of having their parental responsibilities terminated on the basis of evidence that would not hold up against normal parents. Their competences must not be judged against stricter criteria or harsher standards than other parents. Courts must be acutely aware of the distinction between direct and indirect discrimination and how this might be relevant to the treatment of parents with learning difficulties in care proceedings. In particular careful consideration must be given to the assessment phase by a Trust and in the application of the threshold test.

(5) Parents must be advised by social workers about their legal rights, where to obtain advice, how to find a solicitor and what help might be available to them once a decision has been taken to pursue a care application. Too narrow a focus must not be placed exclusively on the child’s welfare with an accompanying failure to address parents’ needs arising from their disability which might impact adversely on their parenting capacity. Parents with learning disabilities should be advised of the possibility of using an advocate during their case eg from the Trust itself or from Mencap and clear explanations and easy to understand information about the process and the roles of the different professionals involved must be disclosed to them periodically. Written information should be provided to such parents to enable them to consider these matters at leisure and with their advocate or advisers. Moreover Trusts should give careful consideration to providing child protection training to staff working in services for adults with learning disabilities. Similarly those in children’s services need training about adults with learning disabilities. In other words there is a strong case to be made for new guidelines to be drawn up for such services working together with a joint training programme. I endorse entirely the views of the Guardian ad Litem in this case when she responded to the “Finding the Right Support” paper by stating:
“As far as I am aware there are no ‘family teams’ in the Trusts designated to support parents with a learning disability. In my opinion this would be a positive development. The research also suggests that a learning disability specialist could be designated to work within family and childcare teams and a child protection specialist could be designated to work within learning disability teams. If such professionals were to be placed in the Trusts in Northern Ireland they could be involved in drawing up a protocol for joint working, developing guidelines, developing expertise in research, awareness of resources and stimulating positive practice. They could also assist in developing a province-wide forum that could build links between the Trusts, the voluntary sector and the national and international learning disability community.”

(6) The court must also take steps to ensure there are no barriers to justice within the process itself. Judges and magistrates must recognise that parents with learning disabilities need extra time with solicitors so that everything can be carefully explained to them. Advocates can play a vital role in supporting parents with learning difficulties particularly when they are involved in child protection or judicial processes. In the current case, the court periodically stopped (approximately after each hour), to allow the Mencap representative to explain to the parents what was happening and to ensure that an appropriate attention span was not being exceeded. The process necessarily has to be slowed down to give such parents a better chance to understand and participate. This approach should be echoed throughout the whole system including LAC reviews. All parts of the Family justice system should take care as to the language and vocabulary that is utilised. In this case I was concerned that some of the letters written by the Trust may not have been understood by these parents although it was clear to me that exhortations had been given to the parents to obtain the assistance of their solicitors (which in fact was done). In terms therefore the courts must be careful to ensure that the supposed inability of parents to change might itself be an artefact of professionals ineffectiveness in engaging with the parents in appropriate terms. Courts must not rush to judge, but must gather all the evidence within a reasonable time before making a determination. Steps must be taken to ensure that parents have a meaningful and informed access to reports, time to discuss the reports and an opportunity to put forward their own views. Not only should the hearing involve special measures, including a break in sessions, but it might also include permission that parents need not enter the court until they are required if they so wish. Moreover the judges should be scrupulous to ensure that an opportunity is given to parents with learning disabilities to indicate to the court that something is occurring which is beyond their comprehension and that measures must be taken to deal with that. Steps should also be taken throughout the process to ensure that parents with learning disabilities are not overwhelmed by unnecessarily large numbers of persons being present at meetings or hearings.

(7) Children of parents with learning difficulties often do not enter the child protection system as the result of abuse by their parents. More regularly the prevailing concerns centre on a perceived risk of neglect, both as the result of the parents’ intellectual impairments, and the impact of the social and economic deprivation commonly faced by adults with learning difficulties. It is in this context that a shift must be made from the old assumption that adults with learning difficulties could not parent to a process of questioning why appropriate levels of support are not provided to them so that they can parent successfully and why their children should often be taken into care. At its simplest, this means a court carefully inquiring as to what support is needed to enable parents to show whether or not they can become good enough parents rather than automatically assuming that they are destined to fail. The concept of “parenting with support” must move from the margins to the mainstream in court determinations.

(8) Courts must ensure that careful consideration is given to ensuring that any decision or judgment is fully explained to such parents. In this case I caused a copy of the judgment to be provided to the parties at least one day before I handed it down to facilitate it being explained in detail before the attendance at court where confusion and consternation could be caused by a lengthy judgment being read which the parents could not follow at the time.”

Views from a Disabled Parent about getting help and support

 Being disabled doesn’t make you a bad parent.

  • You may feel very worried, or a failure or scared that ss will think you are a bad parent BUT anyone who says you are by definition a bad/ neglectful parent because you are disabled is discriminating against you. It’s not legal to say this.
  • ask for an assessment from adult ss before anything else takes place. You can self refer or ask your GP to refer (GP channels urgent referrals and get you seen quicker).
  • adult ss will send an assessor out to your home to do a thorough assessment of your needs. It’s important to find out your council’s criteria and levels for providing help.
  • after your needs have been assessed adult ss will decide whether you’re entitled to any help. It’s in their interests to score your needs as low as possible, as they are legally bound to provide help if you’re assessed as needing it.
  • its adult ss responsibility to meet your needs as a disabled person in all your roles (personal care, as a parent etc). This could be through direct help (providing council or agency carers), or via direct payments (where you have a budget to spend on your care). Sometimes they may refer you on to other services such as charities and home start organisations.
  • The budget for your care should come from adult ss but could in some circs be topped up by children’s services.
  • the theory is that if your needs are being met as a disabled parent, your child should have no remaining needs unmet. However there are situations where councils agree a shared budget.
  • Do find out very clearly on what grounds you are receiving help. Do not agree that your child is at risk of neglect just because of your disability.