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8.3 Support for Disabled Parents and Young Carers - Protocol Between Children’s and Adults Social Care

SCOPE OF THIS CHAPTER

This chapter details the protocol that is in place between Adult Social Care and Children and Young People's Social Care to ensure that appropriate support is in place for disabled parents and young carers.

RELEVANT LEGISLATION AND GUIDANCE

The Framework for Assessment of Children in Need and their families 2000

Children Act 1989

Children and Families Act 2014

Care Act 2014

Guidance on Eligibility Criteria for Adult Social Care, England 2010


Contents

1. Introduction
  1.1 Terminology
2. Eligibility
  2.1 Supporting Parents only
  2.2 Supporting Parents and their Children
3. Access to Funding
  3.1 Financial Assessment
4. Working Together
5. Sharing Responsibilities between CFCS and ASCHPP
  5.1 Universal Parenting Tasks
  5.2 Additional Parenting Tasks
6. Referral and Assessment - Principles
  6.1 Referrals
  6.2 Assessments
7. Provision of Support
  7.1 Personal Budgets
  7.2 Children's Centres (ages 0 to 5 years)
  7.3 Extended Services around Schools
  7.4 Nottinghamshire Young Carers Service
  7.5 Professional Support
  7.6 Advocacy Services
8. Case Examples
  8.1 Mrs W and Baby X
  8.2 Tina 
  8.3 Mrs M


1. Introduction

This protocol is for:

  • All Adult Social Care teams;
  • Children and Young People's Social Care teams.

1.1 Terminology

  • Parent refers to anyone with legal Parental Responsibility for a child or children;
  • A child is a person up to the age of 18 years;
  • A young carer means a child or young person under the age of 18 years who is caring for, or making a significant contribution to the care of, a disabled parent as defined above. Young people qualify for a "carer's assessment" at 16 years of age;
  • A young adult carer means a young person aged 18-24 who is caring for or making a significant contribution to the care of a disabled parent;
  • "Disabled parents" includes parents with a:
  • Learning disability;
  • Physical or sensory impairment;
  • Long-term and/or chronic illness;
  • Mental illness;
  • Drug or alcohol related difficulty.

The definition is intended to cover disabled adults who:

  • Have a child or children of their own;
  • Provide parenting to other children in the household;
  • Are pregnant;
  • Are considering becoming a parent.


2. Eligibility

The majority of disabled parents will carry out their parenting role without needing either NHS or social care support, particularly if they have the support of family and friends. It is the impact on some families of the illness or impairment that is significant, not the diagnosis.

A referral must be made to children's services via the Multi Agency Safeguarding Hub; in circumstances where the parents are not able to make parental decisions in relation to the care of their own children, for example, what they eat, what they wear and whether they attend school.

2.1 Supporting Parents only

  • There are some disabled parents who may need services from ASCHPP to support and assist them in their parenting role, but whose children are not in need of any services from the CFCS. In all cases disabled parents are people who are likely to have a permanent and substantial disability and who would be assessed as eligible for social care support. For details of the County Council's current eligibility threshold see Eligibility and Fair Access to Care Services (FACS). However, when making a decision about eligibility for social care support, staff must always take account of any caring responsibilities undertaken by children or young people under the age of 18. Paragraph 101 of the Guidance on Eligibility Criteria for Adult Social Care, England 2010 states:
  • "Councils should be mindful in applying these criteria that the provision of community care services should ensure that children are not expected to undertake inappropriate levels of caring responsibilities" (page 33);
  • This means that where children and young people are providing inappropriate levels of care for a disabled parent, particularly personal care, the parent must be assessed as eligible for a personal budget;
  • Where one parent works, support will be provided to cover their working hours. The family will be expected to take responsibility for the care of their own children outside working hours, including when the working parent is on annual leave.

2.2 Supporting Parents and their Children

  • There are some disabled parents whose children may be in need of services from CFCS, in addition to parenting support from adult services. It may be that the parenting they are able to provide, as a result of their disability or illness, cannot completely meet the needs of the child. Section 17 of the Children Act 1989 defines a child as being 'in need' if they are unlikely to experience 'a reasonable standard of health or development' without assistance, or if they are disabled.


3. Access to Funding

  • Differences of opinion about funding should not delay the provision of appropriate services. Financial responsibility should be determined in the following way:

    Funding for universal services - funding for services to enable a disabled parent to carry out universal parenting tasks is normally provided by ASCHPP;

    Funding for services to meet additional needs - funding for services to meet additional needs of a child, including additional parenting tasks, is normally provided by CFCS;

    Where the responsibility for funding is not clear, there will be a common approach and an equal contribution by each service involved, for example where a disabled parent is caring for a disabled child. This will prevent delay and is straightforward to manage. It is recommended that in these circumstances a pooled budget is established;
  • ASCHPP will temporarily fund support when there is dispute between agencies or departments about who pays for the support needed. It is expected that disputes will be resolved within one month. The ASCHPP will be reimbursed for any costs incurred if it is established that another agency or department is financially responsible. This is to prevent a delay in services starting or support being agreed.

3.1 Financial Assessment

  • Support provided to disabled parents as a community care service falls within the ASCHPP's normal charging arrangements and assessment staff in particular should ensure that parents are fully aware of the financial implications for them. See the staff guidance on fairer contributions for further information.


4. Working Together

  • A report, published by the former Commission for Social care Inspection in February 2009, 'Supporting disabled parents - a family or fragmented approach?' stated;
  • "Councils have responsibilities under current policy to support disabled parents who have children and to support children who assist their disabled parents. This was policy before the separation of adults' and children's services, but since then competition between departments as to who 'owns' the issues of the families has escalated;
  • As a consequence, families can feel in a situation where they are out of control... This report shows that councils are failing to achieve the right balance of interventions to support disabled parents and the family." (From pages 2 & 6 of the report);
  • The report also identified the need for services to take a whole family approach to supporting disabled parents and their children. This is an approach which recognises individual need, within the context of familial interdependence. It assumes that failing to meet the needs of one family member will impact negatively on the whole family;
  • This premise is born out of the experiences of young carers, where research has indicated a number of negative outcomes for those left to care for their parents. These include self-harm, stress, tiredness and poor mental health. Young carers are also more likely to be bullied and to do less well at school, thus carrying the impact of their inappropriate caring role into adult life;
  • There is an expectation that departments will work effectively together to deliver a prompt and co-ordinated response to requests for assistance. All assessments should be carried out on the premise that the needs of family members are interdependent and assessments will be carried out considering the family holistically and support provided on that basis.


5. Sharing Responsibilities between CFCS and ASCHPP

5.1 Universal Parenting Tasks

  • There are certain parenting tasks that are universal and that are required to meet the needs of any child. These tasks derive from the needs of the child, not from the capacity of the adult to meet them. They apply in families, whatever the circumstances and should therefore be included when considering roles and responsibilities under the, Guidance on Eligibility Criteria for Adult Social Care, England 2010;
  • The day to day activities associated with these tasks will vary according to the age and stage of the child and general circumstances. If the activity would generally be considered typical care for a child of a similar age, for example, dressing a 2 year old or attending a school parents evening for an older child, it is considered to be part of a universal task;
  • The universal tasks for any parent are to ensure their child:
  • a) Is physically cared for - this includes meeting the child's day to day physical needs for adequate and appropriate food, drink, warmth, shelter, rest, clean and appropriate clothing, adequate personal hygiene and social presentation, positive routines and appropriate medical, dental and optical care. For older children this includes providing information about physical and sexual health, substance misuse etc;
  • b) Is safe - this includes meeting the child's needs for a secure environment by adequate protection from hazards, harm or danger, in and out of the home and from contact from unsafe adults or other children and from self-harm;
  • c) Is cared for emotionally - this includes meeting the child's needs for encouragement and praise, appropriate physical contact and comfort, feeling valued and special, having a positive identity and having secure, stable and affectionate relationships with significant adults;
  • d) Has opportunities to learn and socialise - this includes promoting the child's needs for learning and intellectual development, encouragement, ensuring attendance at school, college or preschool, cognitive stimulation, promoting social and educational opportunities, interacting and responding to the child's language and play;
  • e) Receives guidance about behaviour - this includes giving guidance and discipline which meets the child's needs for learning and understanding appropriate social behaviour, managing their own emotions, and to develop an " internal model " which will help them become responsible and autonomous adults;
  • f) Lives in a stable secure environment - this includes meeting the child's needs for consistency and for developing and maintaining a secure attachment to their carer/s and keeping in contact with other family members or other significant people;
  • (From the Framework for Assessment of Children in Need and their families 2000).

5.2 Additional Parenting Tasks

  • An additional task is associated with meeting an extra or special need of the child which is not typical of most children of a similar age. These additional parenting tasks will usually exist whether or not the parent is disabled;
  • Additional tasks include: care for some children with a physical or learning disability who need significantly more or different support than most children, for example, with feeding or bathing or mobility. It can also include children who have specific emotional needs through experiencing significant trauma or neglect or loss;
  • Children with extra or special needs will require an assessment of their needs and appropriate services in their own right by the CFCS.


6. Referral and Assessment - Principles

  • When thinking about appropriate referral and assessment, the following principles apply:

Where a disabled parent requests assistance with their parenting role the presumption will be that this assistance is provided as support from ASCHPP.

A personal budget should be provided to enable eligible parents to carry out their parenting role, either as a managed service, a direct payment or a mixture of both.

Children in need, child protection or children's "looked after" services become relevant only where the need for them is established through the application of the "Framework for the Assessment of Children in Need and their Families".

The welfare and safety of children (including unborn children) is paramount.

Children are usually best brought up within their own families and support services should be provided to enable this to happen.

Agencies working with families where there is a disabled parent must adopt a "whole family" approach so that they notice and, where necessary, address the needs of all family members.

Disabled parents should not be passed between different teams when they ask for assistance.

Workers should not make assumptions about the support that is required by the disabled parent prior to assessment.

6.1 Referrals

  • New referrals for assessing the needs of disabled parents should be directed to the Customer Services Centre, where they will be passed to the Adult Access Team for screening. If safeguarding issues are apparent the Nottinghamshire and Nottingham City Safeguarding Children Boards’ Safeguarding Children Procedures must be followed;
  • A referral can be made without consent, where failure to make that referral or to share information would place a child at risk of significant harm. However, every endeavour should be made to obtain consent if it is judged that such discussions do not place a child or vulnerable adult at risk;
  • Staff in the Adult Access Team, should ensure that cases are given high priority as they may involve the wellbeing of a child. The referral should indicate clearly that it is for a disabled parent;
  • The request for an assessment should be routed to the appropriate team, which is determined by the primary impairment of the parent(s). See the staff guidance on referrals for more information.

6.2 Assessments

  • A community care (SDS) assessment must be completed and should take account of the circumstances and needs of all family members. A carer's assessment relating to the care of the disabled parent should be offered where relevant. A carer's assessment should not be completed in relation to the care of children by the children's parents;
  • Families where a young person is acting as a carer may experience a significant amount of guilt and shame about their circumstances and in some instances, seek to cover up the extent to which a young person is caring. Assessments must be carried out in a sensitive way, which allows the family to be open about their situation, whilst being careful not to undermine the parents or invalidate the young carer's experience;
  • The Social Services Inspectorate recommends the need to cross-reference information and the following recommendations have been adopted for this guidance:

    Adult services teams must routinely record that there are children in the family when assessing a disabled or mentally ill adult. A case note alert on Framework should be sent to any team who are shown as 'involved' with the child;

    Children's teams must record the presence of a disabled or mentally ill adult when undertaking a Child and Family Assessment;

    A case note alert on Framework should be sent to any team who are shown as 'involved' with the parents;
  • Assessors should not assume that children or young people will undertake caring or household duties to a greater extent than they would if neither parent was disabled. Assessors should seek to establish the nature and extent of a young person's caring when assessing a disabled parent;
  • Any child care assessment where a child is identified as a "young carer" should automatically trigger a community care assessment of the disabled parent's support needs by the ASCHPP;
  • Where it is difficult to achieve a satisfactory working partnership arrangement with the parents it is important that they should be assisted to access advocacy services.

6.2.1 The co-ordination of assessments

  • Adult teams will co-ordinate assessments where there is no indication of child safeguarding concerns and the parent needs support to carry out universal parenting tasks, including:
  • Physical care, hygiene and nutrition;
  • Emotional care and support;
  • Care and laundering of clothing;
  • Maintaining an acceptably clean and safe household;
  • Meeting health needs;
  • Support in education (including homework).

Encouragement and support for the intellectual development of children through, for example, doing reading practice with the children of deaf or visually impaired parents where there is no one else to do it.

Encouragement and support to take part in social and recreational activities outside the home.

  • Adult teams will coordinate a joint assessment with staff from CFCS (and other agencies as necessary) where the worker from adult services identifies;

    Complex needs within the family situation, affecting a child's development; and/or

    A role for the involvement of CFCS;
  • Consultation between services must begin immediately and a lead worker must be identified. A decision will be made by Team Managers about the appropriate recording of assessments and care plans;
  • CFCS will coordinate the assessment where the disabled parent:

    Needs support to prevent the child/children suffering significant harm or to facilitate resumption of parental responsibility following safeguarding proceedings; or

    There is a risk of significant harm to a child in the family; or

    The child/children's needs are complex and/or there is a child with disabilities in the family and the child’s needs meet the threshold for level 4 intervention.
  • The resolution of disputes will take place through the relevant Team Managers;
  • Disabled parents should always receive a copy of the record of outcome of assessment; and of any support plans.

6.2.2 Early Help Assessment Framework and Early Help Unit

  • Any professional working with a family can contact the Early Help Unit for advice and support and may find this a useful way of engaging support from children's services, where the young person does not meet the child in need criteria;
  • The Early Help unit can contacted on 01623 433500 or early.help@nottscc.gov.uk.


7. Provision of Support

7.1 Personal Budgets

  • A personal budget will be offered to eligible people, either as a managed service, a direct payment or a mixture of both. If taken as a direct payment, the parents must be made fully aware of what is involved for them. It must be remembered that direct payments can only be used to meet a need of the parent (adult) NOT the child. This means that ASCHPP cannot provide a direct payment to help a child to do a leisure activity, but can fund the aspects of the activity which are a usual part of parenting, for example, transport to the activity and supervision whilst there. For further information see Direct Payments for Adults and Direct Payments for Community Equipment.

7.2 Children's Centres (ages 0 to 5 years)

  • Adult care staff should be aware of the provision for families in Children's Centres: There are 48 Children's Centres in Nottinghamshire and ALL parents and ALL children under five can access services and support. Sometimes parents just want the company of others, sometimes they need information about services, and sometimes the Children's Centre staff may be able to help on the spot. There will be play and early learning designed to appeal to young children available through Children's Centres. All the buildings are fully accessible, and the Centres welcome children and parents of all abilities and needs. Parents are very actively encouraged to become involved in the planning, delivery, management and evaluation of services - there will always be something of interest for all parents to do. The Children's Centres' provision will include the more targeted services for families in need of specialist support previously offered by Social Services' Family Centres;
  • To find out if there is a Children's Centre in a particular area, ring the Children's Information service: Freephone 0800 781 2168. Staff can then liaise directly with the local Children's Centre to see what can be offered to a particular family.

7.3 Extended Services around Schools

  • Many schools now offer parenting classes, family learning opportunities and information and advice for parents on a wide range of issues. Schools are grouped into" families" and each family has its own extended support co-ordinator. Further information about activities and support can be found by contacting individual schools or the Early Help Unit (contact details included in 6.2.2 above).

7.4 Nottinghamshire Young Carers Service

  • This service provides one to one and group support to young carers and their families, a helpline for young carers, their families and professionals and information and advice. This can be accessed via contact with the Early Help Unit;
  • Parentline Plus - offers a wide range of information, advice and support on all aspects of being a parent over the telephone. Also offers a six week telephone Extended Support programme where parents can access additional support.

7.5 Professional Support

  • Adult services occupational therapy (OT) staff should be involved early in the assessment process to make sure that aids are provided where necessary. This means, for some women, an assessment during pregnancy.

7.6 Advocacy Services

  • There are a range of independent advocacy services in the County.


8. Case Examples

8.1 Mrs W and Baby X

  • Mrs W has severe epilepsy and often has severe seizures at night. This leaves her weak and very tired and often unable to get up in the morning, lasting into the afternoon. Mrs W's condition deteriorated during pregnancy, resulting in her being admitted to hospital towards the end of her pregnancy. Baby X was born and was found to have some disabilities himself;
  • Continuing health care funding was agreed for Mrs W at 8hrs per day, 5 days per week. Her husband agreed to cover the weekends;
  • Childcare services agreed to pay for a direct payment for the baby - 8hrs per day, 4 days per week;
  • Issues:

    The same carer could not be used to care for the mother and the baby, resulting in 2 people having to be in the house;

    ASCHPP felt they could only "support" with parenting. As Mrs W was, at times, unable to parent, they felt they were not "supporting";

    General confusion as to which agency had responsibility for baby and Mrs W.;
  • Outcome under this staff guidance:

    Funding for services to support Mrs W and baby X is pooled between departments enabling one carer to be employed for both.

8.2 Tina

  • Tina is a single parent of two children, her daughter Mandy is aged thirteen and the boy Tom is six. Tina has a chronic pain and fatigue illness which makes going out of the house very difficult. Tina has not been seen by a social worker from the adult services team but she had been receiving a direct payment from the children and families team which she used to organise a neighbour to take Tom to school. This service was suddenly removed without explanation and Tina was left to sort out how she would be able to get Tom to school.
  • Rather reluctantly Mandy agreed to walk Tom to school and pick him up at the end of the school day. Mandy should have been at school by 8.30am but Tom's school did not start until 8.45am. Consequently Mandy was late for school every day and was also unable to take part in any after school activities;
  • Issues:
  • The local Disabled Parents Network (DPN) met with Tina and then contacted the adult disability team and the children and families team who agreed to arrange an assessment. DPN supported Tina when social services did a joint assessment visit;
  • Although both social workers expressed a concern to meet the family's needs, they introduced themselves as from the adult services, to support mum, and from the children's services, to support Tom. It was clear that the teams were working independently rather than in partnership and neither team was prepared to take responsibility for supporting Tina to take Tom to school;
  • Outcome under this staff guidance:

At the time of referral the CFCS alerts the ASCHPP to the presence of a disabled parent in the family.

Responsibility for the lead role in dealing with the case is agreed between CFCS and ASCHPP.

Tina is assessed by the adult social care team and, if eligible, is given a direct payment to pay someone to take Tom to school. This is a universal service and is therefore the responsibility of ASCHPP.

8.3 Mrs M

  • Mrs M is 48 and has severe pulmonary fibrosis and also diabetes, arthritis. She is short of breath after any activity, needs oxygen and has to use an electric scooter to go outside. She has a social worker from an adult social care team. Mr M. is also disabled with severe psoriasis and cannot assist much at all (although he receives carers allowance for his wife). The family live in a council house where Mrs M cannot get upstairs to the bedroom or bathroom and so sleeps in a single bed in the dining room;
  • The other member of the household is E, their 11 yr old daughter, who is her mother's main carer: assisting with shopping, preparing meals, bringing bowls of water so her mother can wash. Mrs M first asked for assistance from social services because she was concerned about how much E was doing;
  • Issues:

    Because of the circumstances the housework has been neglected for years and the house needs a professional clean before social care personnel can offer home care;

    The social worker tried to get funding for the family to go on holiday for 2 weeks so that the house could be cleaned and then services started. She couldn't obtain funding from adult services so turned to young carers funding: this funded the family break at £800 approx;
  • Outcome under this guidance:

    Cleaning the house is a universal service and, as it could not take place with the family in residence, the ASCHPP would be responsible to paying for accommodation elsewhere;

    ASCHPP provide support to ensure that E. is not having her development impeded by her caring role within the family.

End