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17.7 Protocol and Practice Guidance: The Assessment of Parents with Cognitive Limitations (learning disabilities)

Contents

  1. Protocol
  2. Practice Guidance

    Appendix 1: Referrals to the Adult Disabilities Team are made through the Adult Services Access Team (ASAT) Flowchart

    Appendix 2: Some Research Evidence


1. Protocol

Purpose

This protocol has been written to address the specific needs of supporting and protecting children where the parent(s) have Cognitive Limitations. It has been written to be used by all statutory Adult and Children’s Services, non-statutory, private and voluntary sector services in the Isle of Man.

This Protocol should also be read in conjunction with:

  • DDA 2006;
  • Practice Guidance for the completion of PAMS;
  • Adult Learning Disability Service Strategy 2014 – 2019;
  • Human Rights Act 1998, Article 8.

Protocol Principles

The principles associated with this protocol are:

  • To ensure effective working together and effective multi-agency assessments;
  • To ensure appropriate multi-agency intervention to support parents and safeguard children;
  • To ensure access to specialist assessments and assessment tools;
  • To ensure information is adapted to support parents understanding;
  • To ensure the child’s welfare is paramount.

General Principles

It is in the context of safeguarding children that all agencies and professionals must work together to support children and families especially when parents have cognitive limitations and/or mental health issues. It is only in this way that common barriers to receiving appropriate support in their parenting role can be addressed.

When harm is suspected or occurs, children have a right to be protected whether the harm was intentional or not. Where a child is at risk of significant harm and in need of protection, the parenting capacity and risks to the child must be assessed. This is best done by joint planning and joint sharing of information about risk.

Some Research Findings

Research findings evidence the need to increase effectiveness of assessment, communication and joint working between professionals from different agencies, if parents are to be adequately supported and children protected. (McGaw (2000) “What works for Parents with Learning Disabilities?” Aspects of the parents’ intellectual functioning (cognitive ability) can have an effect on the child’s experience and development. The parents’ ability to learn to respond to the needs of their child and the timescale, over which this learning is required to take place, will be an important part of the assessment.

The Parenting Assessment Manual (PAMS) assessment is an evidence based parenting assessment aimed at vulnerable families particularly those with learning difficulties, their children and their needs. It offers an intensive assessment of parental knowledge, quality of skills to provide the assessor with a framework of assessing parenting through observation and various exercises. Essentially, the PAMS assessment covers: child care and development, behaviour management, independent living skills, safety and hygiene, parents’ health, relationships and support, impact of the environment and community on parenting. By breaking down these elements of parenting into testable components, PAMS starts to make an assessment that is evidence based.

Any assessment of parenting carries an element of subjectivity and the PAMS requires the assessor(s) to make judgements about whether a parent’s ability is good, adequate or poor. On completion, results are calculated which provides a visual profile identifying families strengths, needs and risks associated with their parenting, as well as a recommended teaching programme. PAMS can be utilised as a screening tool or a comprehensive specialist assessment central to the identification and targeting of support by those families where parents have additional and/or complex needs. More research findings are listed in Appendix 2: Some Research Evidence.

Definitions of Disability

The World Health Organisation defines learning disabilities as a ‘state of arrested or incomplete development of mind accompanied by significant impairment of intellectual and social functioning.’ It is a condition which reduces the ability to learn new things resulting in difficulties with some social tasks such as communication, self-care and awareness of health and safety. These impairments are presented in childhood and not acquired as a result of an accident or illness in adulthood.

The DDA 2006 says that a person has a disability (for the purposes of this Act) if they have a physical or mental impairment which has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities.

For this protocol, the definition of ‘learning disability’ will be based on the following:

  • Lower intellectual ability (usually an IQ of less than 70);
  • Significant impairment of social or adaptive functioning;
  • Onset in childhood.

This is combined with the definition set out in The White Paper Valuing People (2001):

  • A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence); with
  • A reduced ability to cope independently (impaired social functioning) which started before adulthood, with a lasting effect on development.

Adults are considered to have a learning disability if they have been identified as a child within education services as having a Special Educational Needs (SEN) associated with moderate, severe or profound/multiple learning difficulty.

Only adults with a clear learning disability diagnosis meet the threshold for adult care services as set out in Fair Access to Care Services (FACS) will be eligible for support from the Adult Disabilities Team.

Equal Opportunities

Research shows that assessments are sometimes influenced by stereotypes about the capacity of parents with cognitive limitations and parenting. In response to such research, the following quotes are of real importance:

“People with learning disability have the same rights and are entitled to the same expectations and choices as everyone else, regardless of the extent or nature of the disability, their gender and ethnicity.” (Cotson et al (2000) Implementing the Framework when the parent has learning difficulties).

“Parents with learning disability can in many cases be supported by family and supportive networks and professionals, enabling them to respond effectively to the needs of their children.” (DoH (2000) Framework for the Assessment of Children in Need and their Families; Good Practice Guidance)


2. Practice Guidance

The welfare of the child is paramount.

Acting on Concerns

All workers, together with those in the Adult Disability Team need to be alert to Children’s needs and signs of significant harm, including neglect.

Consultation and or Referral

When professionals want clarification about possible concerns and are unsure whether to make a referral, ‘what if’ consultations are available from the duty supervising social worker or social worker in the Children & Families (C&F) Initial Response Team (IRT). When a worker has a child protection concern, it should be discussed with their line manager and concerns recorded as per agency policy.

A referral should be made on the MARF to Children and Families in accordance with the Isle of Man Safeguarding Children Board procedures.

When a child is felt to be at immediate risk of harm and it is felt too dangerous to inform parents, this should be recorded and the information passed straight to the duty social worker, IRT.

Impact of Parental Learning Disability

Professionals need to be alert to the possibility of significant harm and signs of neglect in children. Children who may be more vulnerable are:

  • Unborn babies or infants under 1 year old;
  • Toddlers;
  • Children with a disability or special educational needs;
  • Children in a caring role;
  • Children experiencing domestic violence;
  • Parents with a history of violence or sexual abuse.

Due to the increased vulnerability of this group of children they may require a rapid multi-agency response to assess parents’ learning disability and potential for adequate parenting.

Assessments will be in accordance with NARRATES (2016).

Parental Considerations as part of the Assessment Process

When parental cognitive limitations are thought to be likely, there will be a need for additional considerations, as part of the assessment process. Aspects of the parent’s cognitive ability can have an effect on the child’s experience and development. The parents’ ability to learn and respond to the needs of their child and the time scale over which this learning is required to take place, will be an integral aspect of any assessment.

The following assessments may be required:

  • WAISS assessment to establish IQ;
  • Fair Access to Care (FACS);
  • Parenting Assessment Manual (PAMS) as part of the multi-agency assessment of parents;
  • Cognitive functioning;
  • Functional assessment (also known as living skills assessment);
  • Psychological factors that may impact on parenting ability, e.g. loss, mental illness, emotional issues resulting from trauma, etc.

Referral to the Adult Disability Team

Prior to a referral being made to the Adult Disability Team, it is recommended that practitioners use the initial screening questions in respect of the parents as set out below:

  1. Did they attend Learning Support Unit?
  2. Did they need extra help at school if in mainstream?
  3. What did they do after leaving school? Did they obtain an NVQ? Did they attend a day centre?
  4. Are they in receipt of any benefits, e.g. DLA?
  5. Do they get any support from family members or professionals from Learning Disability services?
  6. Do they respond to written communication either in writing or by approaching the letter writer?
  7. Do they seem to understand requests or comments and follow them through?
  8. Are they aware of areas they need help with?

Only adults with a learning disability who have been assessed as meeting the threshold for adult care services as set out in Fair Access to Care Services (FACS) will be eligible for support from the Adult Disabilities Team. Therefore unless there is clear evidence from the above information that the person has a learning disability (IQ under 70), then a psychology assessment to establish the person’s learning disability will be required prior to referral to Adult Disabilities Team.

Assessing Significant Harm and Parental Learning Disabilities

“Where a parent has a learning disability it will be important not to generalise or make assumptions about their parental capacity. Learning disabled parents may need support to develop the understanding, resources, skills and experience to meet the needs of their children. Such support is particularly needed where they experience additional stressors such as having a learning disabled child, domestic violence, poor physical and mental health, substance misuse, social isolation, poor housing, poverty and a history of growing up in care. It is these additional stressors, when combined with learning disability, that are most likely to lead to concerns about the care a child or children may receive.” (Working Together to Safeguard Children, p160: DFES (2006).

It will be essential for professionals to use Dynamic Risk Analysis to determine risk factors, protective factors and impact (NARRATES (2016) p 41: C&F).

In using the Dynamic Risk Analysis, the starting point is a consideration of the risk factors. In this regard, social workers need to: list the actual and/or believed harm; identify who or what is the source of harm; indicate if it is disputed or accepted; indicate severity, pattern and history of harm; list complicating factors such as mental health, substance misuse, learning disability, domestic abuse. Once this has been done, then the impact on the child can be considered.

Social Workers will consider the impact on the child of both physical harm (Injuries, developmental delay, failure to thrive) and Psychological harm (behaviour impairment, self-harm, fear, distress, absconding and attachment issues).

Pre-birth and Post-birth

If any professional or agency has concerns about the capacity of the pregnant woman/mother and her partner to self-care and/or to care for the baby, it should be discussed with the line manager, recorded and a referral should be made to Children and Families in line with pre-birth procedures. Children’s social workers will undertake an assessment using risk estimation for protecting an unborn child (NARRATES: Appendix 7).

Some mothers with learning disabilities may not recognise that they are pregnant, and this should be considered if there are suspicions that they are concealing or have concealed a pregnancy, therefore liaison with the midwifery service is important.

Sharing Information with parents who have a Learning Disability

At all times parents will need to be informed of action that is proposed and subsequently taken. Where assessments are offered, their function and purpose will be fully explained to the parent(s) by the relevant practitioners and the parent’s informed consent sought and recorded before any assessment is carried out. The following questions should also be asked:

  • Do the parents need a supporter?
  • Are the written materials adapted and accessible to them? (The need for reasonable adjustment);
  • Does the assessor have the necessary skills to assess an adult with learning disabilities?

In the first instance, consent must be sought prior to a parent(s) undertaking a PAMS assessment, with there being a clear expectation of the intensive nature of the work to be carried out and the professionals to be involved. Sharing information in a way that is sensitive, respectful and appropriate to the level of understanding of the parents is pivotal. Parents can often find the involvement of different professionals and agencies overwhelming and confusing, resulting in a further decline of their functional ability.

Interagency Case Management

In order to manage cases and make inter-agency communication effective, professionals need to consider:

  • Early communication if cognitive limitation is suspected in the parents;
  • Regular meetings (monthly short meetings, phone calls) in the case of open cases to Adult Disability Team;
  • Involving Speech and Language Therapists (SLT) when communication has been assessed to be a problem;
  • Involving an advocate in the early assessment phase if this is deemed as needed.

Joint working

Joint working needs to be agreed at all stages of the child protection process, and especially as part of any child protection planning and in Core Group Meetings. This is essential to ensure appropriate services are provided by all agencies, needs are not overlooked, visits are not duplicated and professionals do not become divided. In cases where health and/or social needs are identified, the Adult Disability Team needs to identify lead health or social care professionals to support the parents.

Consultation and advice can be sort from the Adult Disability Team, to workers in children’s services to support the tailoring of interventions to the level of needs and disability of the parent. However, all professionals have a responsibility to adapt information to ensure that it is accessible and understandable to parents with Learning Disabilities.

Eligibility Criteria for PAMS

For this protocol, a PAMS will be deemed appropriate to be undertaken where this is a parent(s) with an IQ below 70.

In the U.K. learning disabilities are categorised based on IQ test scores as follows:

  • 50-70: Mild;
  • 35-50: Moderate;
  • 20-35: Severe;
  • <20: Profound.

Co-ordination of PAMS

There needs to be a planning meeting led by Children & Families to identify who is doing what components of the assessment process. This will be attended by a C&F team manager to ensure that the allocation of the assessment is done fairly and appropriately in Children and Families. The social worker from the Adult Disabilities Team will be required to undertake relevant elements of the assessment and also offer advice to C & F around reasonable adjustments/communication with the client etc. Time-scales should be agreed for completion. Ideally the social worker will input information/data to the specially designated PAMs Assessment computer housed in Murray House.

Once the assessment is complete a multi-disciplinary meeting would be held to determine responsibility for implementing the recommendations generated by the assessment.

Interventions

Parents with Learning Disabilities would appear to need interventions which are:

  1. Based on the outcomes of the Parenting Assessment Manual assessment;
  2. Set up at home to maximise transference of learned skills;
  3. Able to reduce the discrepancy between parents’ abilities and the child’s essential needs;
  4. Matched to the parents level of understanding and comprehension (Including demonstration, pictorial information in addition to verbal instruction and. if needed, broken down into small steps);
  5. Long term;
  6. Broken down into small steps;
  7. Matched to the parents level of understanding and comprehension (including demonstration);
  8. Designed to include pictorial information in addition to verbal instruction.

Sharing Information with Parents who have Cognitive Limitation

The following bullet points provide advice on sharing information with parents:

  • Sharing information in a way that is sensitive, respectful and appropriate to the level of understanding of the parents is crucial. This is in order to ensure that professionals’ contact is effective;
  • Parents often need more time and concrete examples to understand communications. Clear language is therefore important. Written agreements may be helpful;
  • Parents can find the involvement of different professionals and agencies overwhelming and confusing, resulting in a further decline of their functional ability;
  • It is paramount that the professionals who have contact with parents with learning disabilities are identified and that communication pathways are developed to facilitate a cohesive, co-ordinated service, which is supportive to both parents and professionals alike. This also reduces the need for high numbers of professionals directly involved.

Interagency Case Management

In order to manage cases and make inter-agency communication effective, professionals need to consider:

  • Early communication if cognitive limitations in the parents are suspected;
  • Regular meetings (monthly short meetings, phone calls) in the case of open cases to Adult Learning Disability Team;
  • The involvement of Speech and Language Therapists (SLT) when needed;
  • The involvement of an advocate (independent from Statutory Services) and/or a facilitator if indicated and in agreement with the parent(s).

Joint Working

Joint working needs to be agreed at all stages of the child protection process, and especially as part of any child protection planning and in Core Group Meetings. This is essential to ensure that: appropriate services are provided by all agencies; needs are not overlooked; visits are not duplicated and professionals do not become divided.

Co-ordination of Cases

Within the Child Protection process the Children and Families social worker will be the key worker responsible for case co-ordination.


Appendix 1: Referrals to the Adult Disabilities Team are made through the Adult Services Access Team (ASAT)

Click here to view Appendix 1: Referrals to the Adult Disabilities Team are made through the Adult Services Access Team (ASAT) Flowchart.


Appendix 2: Some Research Evidence

Click here to view Appendix 2: Some Research Evidence.

End