Parent carers of children with complex needs

As identified by Sartore (2013) - being a parent carer of a child with complex needs (eg disability, developmental delay, learning difficulties or other chronic or complex conditions) can affect family and social relationships and increase feelings of being overwhelmed, isolated and lacking support (McGuire 2004; Resch 2010; Strunk 2010). It can place high demands on time and energy (eg through physical caregiving activities, provision of therapy and advocating for the child)  which may impact on employment, social activities, and hobbies.

Being a parent carer may affect quality of life, and elevate levels of psychological distress such as depression, anxiety, or stress (Cheshire 2010; McGuire 2004; Resch 2010, Van Riper 1992; Tak 2002, Banach 2010). Furthermore, the pressure to meet the child’s needs whilst maintaining family functioning is often evident (Cheshire 2010; Lee 2007; McGuire 2004; Resch 2010; Strunk 2010), and having a child with additional needs can increase strain on family resources.

Parent carers may have difficulty gaining access to the services and resources they need (Banach 2010). Furthermore, isolation from formal and informal social support mechanisms may be apparent (Tak 2002). A child’s behavioural problems may cause stress for families (Baker 2002) and parents may lack confidence in dealing with these or may find it difficult to access support for these issues (Twoy 2007).

Challenging behaviours may make social outings difficult, a problem made worse by a lack of understanding in the community of the underlying condition (Twoy 2007). Parents can feel stigmatised and as a result, they may restrict social activities or may socialise only with other families whose children have a similar diagnosis. In some cases families may be excluded from social gatherings by others (Gray 2002).

The local picture

Unfortunately, there is a lack of reliable information on the size and distribution of the parent carer population in Calderdale. Nonetheless, national statistics on the size and distribution of the 0-18 year old population with complex needs, used alongside local service data, may help us gain a better understanding of the current Calderdale picture.

The annual national Family Resources survey (Department for Work and Pensions (DWP), 2013) found that 7% of the UK population aged 0-18 years are children and young people with disabilities. Although a crude analysis, applying this percentage to the most recent Calderdale population estimates would suggest there are approximately 3,200 children and young people with disabilities in Calderdale (Office of National Statistics (ONS), 2014). An alternative estimate, from the 2011 Census, suggests that around 1,500 (3%) of children in Calderdale ‘have their day to day activities limited by a long term health condition or disability’. Finally, Public Health England (PHE) report, in their Learning Disability Profiles, that in 2014 1,961(or 53.3 per 1,000) children with learning disabilities were known to schools in Calderdale (a proportion significantly higher than both the regional and England average). Although this information is only a proxy measure for the size of the local parent carer population in Calderdale, it does suggest there will be a sizable population for which health and wellbeing needs are pertinent.

This information may be supplemented by local service data – which indicates the level of service demand locally - for example:

  • Unique Ways (previously Calderdale Parents and Carers) currently has over 900 parent members;
  • From the available data collected in 2014-15 it appears that parent members mainly live in Park ward (which may be due in part to the location of Unique Ways offices);
  • 22% of members identify themselves as from ethnic minorities;
  • 83% of members are female;
  • The majority (66%) of Unique Ways’ members are aged between 31 and 45 years.

Parent carers access Unique Ways for a number of reasons, which may be reflective of issues in the population more generally. Some key reasons, from service data, include:

  • Post diagnosis, hoping to gain an understanding of what services and sources of financial support are available;
  • Accessing information needed to make informed choices;
  • Building a peer support network;
  • Sleep difficulties;
  • Behaviour difficulties;
  • Mental health difficulties – how to identify and respond;
  • Transferring from a statement of Special Educational Needs (SEN) to an Education Health and care (EHC) plan;
  • Applying for benefits and grants;
  • Raising concerns, for example in regard to short breaks or childcare.

Insight from Unique Ways (including survey data, service data and anecdotal evidence from working with parents and carers) highlight the difficulties associated with being a parent of a disabled child. In Calderdale, particularly pertinent issues for parent carers include:

Issue Sources

Feeling isolated, vulnerable, stigmatised and rejected

Unique Ways service data, anecdotal evidence from Unique Ways 

Poverty and an inability to work

Unique Ways service data, anecdotal evidence from Unique Ways 

Feeling they are unable to maintain their own lives and identity outside being a parent

Unique Ways annual survey, anecdotal evidence from Unique Ways 

Having a disability themselves

Unique Ways service data

Feeling unable to maintain relationships with family and friends

Unique Ways annual survey, anecdotal evidence from Unique Ways 

Feeling there isn't sufficient support for them

Unique Ways annual survey

Not knowing who to talk to - to access the support they need

Unique Ways service data, Unique Ways annual survey, anecdotal evidence from Unique Ways 

Having difficulty coping with day to day life, due to issues such as:

  • sleep issues;
  • lack of support;
  • coping with child's behaviour;
  • coping with numerous health appointments;
  • relationship issues;
  • inability to have a break from caring responsibilities;
  • dealing with own health issues;
  • stress, pressure and anxiety.
Unique Ways service data, Unique Ways annual survey, anecdotal evidence from Unique Ways 

Current provision

Although Unique Ways (previously Calderdale Parents and Carers) is the only generic support organisation specifically for parent carers in Calderdale, other services are available. Here is a short overview of Unique Ways and examples of other current service providers:

Calderdale Unique Ways

Unique Ways supports parent carers of children with any additional needs or disabilities, eg physical disabilities, learning disabilities and ongoing health conditions, where the child is aged 0-25 years old. This support is available at any time during the family’s journey, including pre-diagnosis.

Unique Ways offers a variety of support services for parent carers and their families, including:

  • Specific courses including the ‘Insiders’ Guide’;
  • Person centred planning;
  • Information sessions;
  • Information, guidance and signposting;
  • Newsletters and INclusive Calderdale magazine;
  • Coffee mornings and other peer support groups;
  • Sleep support;
  • Independent Support (EHC process).

Unique Ways also houses Family Voice Calderdale, which enables the collective voice of parent carers to influence the planning, shaping, commissioning and delivery of services in Calderdale.

Disabled Children’s Team (DCT)

DCT is a team within Calderdale Council which includes social workers, occupational therapists, and learning disability nurses. The DCT support children with severe physical disabilities, or moderate or severe learning disability. They can provide advice to parents and carers.

Child and Adolescent Mental Health Services (CAMHS)

CAMHS provide support for children and young people aged up to 18 years old who are experiencing emotional and mental health problems. This includes direct work with children and young people and their families, both on an individual and group basis.

Family Support

Practical and emotional support is available to families with children aged 0-19 years old with issues such as routines, boundaries, behavioural problems, and at times of crisis and complex problems. They can also carry out assessments of need which can assist parent carers in accessing additional support, including applying for short breaks.

Home- Start Calderdale

Homestart provide support to families across the borough who have young children, struggling with a variety of issues including family breakdown, illness or disability, lack of confidence, loneliness or simply lots of small children, plus practical support, and help around routines. They have a dedicated project which supports where there is a disabled child up to the age of 11 years old.

Special Educational Needs and Disability Information Advice and Support Service (SENDIASS)

SENDIASS provide information, advice and support on education in the following areas:

  • support in meetings or with letter writing;
  • assessment process and Education health and care (EHC) plan needs;
  • secondary school choice;
  • fixed or permanent exclusions;
  • advice about education law and the Special Educational Needs (SEN) code of practice.

User views

Unique Ways carry out an annual survey of families with children with disabilities to find out their satisfaction with a variety of services and how this impacts on them as a family.

In 2015, 97 parent carers responded to the survey (representing around 10% of service users). Not all respondents answered all the questions. Here is a summary of some of the key questions and responses from this survey. It is important to consider that the results reported here are the views of parent carers who responded to the survey. Therefore, these findings may not reflect the views of the wider parent carer population in the area.

Parent Carers were asked the extent to which they agree with the following statements:

  1. My child and I are involved in decision making about support packages from services which meet our needs

    Response Percentage
    Agreed 43%
    Disagreed 31%
    Neutral response 26%

    Over the four years the survey has operated, there has been a substantial overall decrease in satisfaction (-12%) and a  rise in dissatisfaction (+6%) regarding involvement in decision making.

  2. I can access childcare for my child with disabilities or additional needs which meets our family needs

    Response Percentage
    Agreed 30%
    Disagreed 46%
    Neutral response 24%

    Over the four years the survey has operated, there has been a substantial overall decrease in satisfaction (-15%) and a substantial rise in dissatisfaction (+11%) regarding access to childcare.

  3. As a parent or carer of a child with disabilities or additional needs, I find support is available to me (this includes support from family, friends or voluntary organisations as well as services)

    Response Percentage
    Agreed 40%
    Disagreed 43%
    Neutral response 17%

    Over the four years the survey has operated, there has been a significant decrease in satisfaction (-12%) and a marked rise in dissatisfaction (+20%) regarding availability of support.

  4. I know where to find out information about 'Calderdale's Local Offer' for children with special educational needs and disabilities

    Response Percentage
    Agreed 52.5%
    Disagreed 32.5%
    Neutral response 15%

    Compared to 2014 there has been a small decrease in knowledge (-0.5%) but conversely, there has been a decrease in lack of knowledge (-6.5%) regarding where to find out about the local offer.

  5. I know how to get help and support if I am not satisfied with the support my child gets from their school / setting or Calderdale

    Response Percentage
    Agreed 51%
    Disagreed 35%
    Neutral response 14%

    Compared to 2014 there has been a small decrease in knowledge (-2%) and a significant rise in lack of knowledge (+11) regarding where to get support.

  6. I find information about services and other support readily available and accessible

    Response Percentage
    Agreed 35%
    Disagreed 41%
    Neutral response 24%

    Over the four years the survey has operated, there has been a small overall increase in satisfaction (+1%) but a significant rise in dissatisfaction (+15%) regarding information being readily available and accessible.

  7. I am able to maintain my own life and identity over and above being the parent of a disabled child

    Response Percentage
    Agreed 37%
    Disagreed 28%
    Neutral response 35%

    Over the four years the survey has operated there has been an overall increase in satisfaction (+6%) and decrease in dissatisfaction (-6%) regarding maintaining one’s own life and identity.

  8. I am able to maintain a balance between caring for my disabled child and spending quality time with my disabled child

    Response Percentage
    Agreed 40%
    Disagreed 25%
    Neutral response 35%

    Over the four years the survey has operated there has been a small overall decrease in satisfaction (-3%) and a small rise in dissatisfaction (+3%) regarding ability to maintain a balance.

  9. We are able to maintain family life and undertake activities together

    Response Percentage
    Agreed 37%
    Disagreed 29%
    Neutral response 34%

    Over the four years the survey has operated there has been a small overall decrease in satisfaction (-3%) but a small decrease in dissatisfaction (-2%) regarding maintaining family life.

  10. I am able to maintain relationships with family and friends

    Response Percentage
    Agreed 39%
    Disagreed 25%
    Neutral response 36%

    Over the four years the survey has operated there has been a small overall decrease in satisfaction (-3%) but conversely, a significant decrease in dissatisfaction (-7%) regarding maintaining relationships.

  11. I feel confident in the services and professionals who work with us

    Response Percentage
    Agreed 38%
    Disagreed 27%
    Neutral response 35%

    Over the four years the survey has operated there has been a significant overall decrease in satisfaction (-15%) and a significant rise in dissatisfaction (+12%) regarding confidence in services and professionals.

  12. I am able to regularly get a good night's sleep

    Response Percentage
    Agreed 45%
    Disagreed 35%
    Neutral response 20%

    Over the four years the survey has operated there has been a small increase in satisfaction (+1%) and a decrease in dissatisfaction (-6%) regarding ability to get a good night’s sleep.

  13. I regularly feel stressed

    Response Percentage
    Agreed 49%
    Disagreed 27%
    Neutral response 24%

    Over the four years the survey has operated there has been a small overall decrease in feeling stressed (-3%) and a rise in not feeling stressed (+5%).

  14. I am able to take time to look after my own physical health

    Response Percentage
    Agreed 29%
    Disagreed 38%
    Neutral response 33%

    Over the four years the survey has operated there has been a decrease in satisfaction (-5%) and a small rise in dissatisfaction (+4%) regarding having time to look after one’s own physical health.

  15. I am able to take a break from caring responsibilities

    Response Percentage
    Agreed 42%
    Disagreed 33%
    Neutral response 25%

    Over the four years the survey has operated there has been a significant overall increase in satisfaction (+12%) and a significant decrease in dissatisfaction (-10%) regarding ability to take a break.

  16. I feel worried about my child's safety and / or my family's safety

    Response Percentage
    Agreed 47%
    Disagreed 37%
    Neutral response 16%

    Over the four years the survey has operated there has been an overall increase in worry (+8%) and no change in not feeling worried (0%).

  17. I feel that my family is able to manage financially

    Response Percentage
    Agreed 48%
    Disagreed 19%
    Neutral response 33%

    Over the four years the survey has operated there has been a small overall increase in satisfaction (+3%) but a small rise in dissatisfaction (+2%) regarding ability to manage financially.

A copy of the survey report is available: PDFCalderdale parent carer satisfaction survey results 2015 [PDF 845KB] .

Unmet needs

Based on the information in The local picture and and User views sections, a number of areas of unmet need can be inferred:

Parent Carers should be provided with breaks from caring

Issues were raised regarding the short breaks application process and outcomes. Also, parents reported:

  • exhaustion and stress;
  • being unable to maintain a social life;
  • being unable to maintain employment;
  • being unable to get adequate sleep;
  • being unable to attend their own health appointments.

This suggests a need to enable more opportunities for parent carers in Calderdale to have a break from their caring responsibilities.

Services should be available, accessible, timely and consistent

Parents reported:

  • difficulties being able to access services and being required to fight for support;
  • long waiting lists for support;
  • lacking knowledge of what support is available and of how to find this out;
  • their views not being taken on board in regards to services;
  • changes in staff.

This suggests a need to ensure that services receive adequate funding to meet need, as well as further promotion of information sources such as the Local Offer.

Parent Carers’ mental health should be supported

Parents reported:

  • loneliness;
  • isolation;
  • stress;
  • depression;
  • anxiety.

This suggests a need to focus upon parent carers’ emotional wellbeing through targeted services.

Issues around behaviour and risk should be addressed

Parents reported:

  • difficulties with children’s behaviour, including fighting with siblings;
  • feeling their children are at risk.

This suggests a need for more support for parent carers in regards to behaviour of disabled children.

Parents should be supported to manage their families’ finances

Parents reported:

  • financial difficulties as a direct result of having a disabled child;
  • resorting to funding services and equipment themselves when these were not provided as part of statutory duties.

This suggests a need to ensure that all statutory duties are met, for services and equipment to be provided in a timely manner to prevent parents feeling the need to self-fund, as well as targeted support to manage finances.

Projected future need

  • As governmental developments of personalised budgets and restructures continue to be rolled out, Unique Ways expects an increase in demand for support around welfare benefits and specialist benefit structures. Unique Ways does not currently have funding to support this projected future need;
  • Support for families and carers in completing the Special Educational Needs and Disability (SEND) planning process will continue to be required;
  • Training and key support service functions will continue to be required by parent carers, eg a 'need for sleep' project and advocacy are evidenced (Unique Ways service data) but are not currently funded;
  • Increasing Unique Ways membership, as evidenced in recent years, will have an impact on service demand and provision;
  • Further information on the demographic picture of Calderdale and how population changes may affect local need can be found in the demographics chapter of the JSNA;
  • Various vital support services, including those provided by Unique Ways, are dependent on ongoing funding being secured.

Key considerations linked to the known evidence base (what works?)

“Attempts to improve the situation for the child and their family need to take account of the dynamic relationship between the condition(s) and the context. The UN Convention recognises that the attitudinal and environmental barriers faced can hinder a person’s full and effective participation in society on an equal basis with others and be a violation of their human rights”. (United Nations, 2008)

References and further information

References

  • Banach et al. 2010: Family support and empowerment: Post autism diagnosis support group for parents; Social Work with Groups: A Journal of Community and Clinical Practice 2010;33(1):69–83;
  • Unique Ways, 2014: PDFCalderdale parent carer satisfaction survey results 2015 [PDF 845KB] ;
  • Cheshire et al., 2010: The psychosocial well-being of parents of children with cerebral palsy: a comparison study. Disability and Rehabilitation 2010;32: 1673–7;
  • Gray, 2002: ’Everybody is just embarrassed’: felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness 2002;24(6):734–49;
  • McGuire, 2004: Mothers of children with disabilities: occupational concerns and solutions. OTJR-Occupational Participation and Health 2004;24(2):54–63;
  • ONS, 2014: Annual mid year population estimates 2014 ;
  • Resch, et al., 2010: Giving parents a voice: a qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology 2010;55(2):139–50;
  • Sartore et al., 2013: Peer support interventions for parents and carers of children with complex needs (Protocol). Cochrane Database of Systematic Reviews 2013, Issue 6. Art. No.: CD010618. DOI: 10.1002/14651858.CD010618;
  • Strunk, 2010: Respite care for families of special needs children: a systematic review. Journal of Developmental and Physical Disabilities 2010;22(6):615–30;
  • Tak et al., 2002: Family stress, perceived social support and coping following the diagnosis of a child’s congenital heart disease. Journal of Advanced Nursing 2002;39(2): 190–8;
  • Twoy et al., 2007: Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners 2007;19:251–60;
  • United Nations, 2008: Convention on the rights of persons with disabilities ;
  • Van Riper et al.,1992: Parental and family wellbeing in families of children with Down Syndrome: a comparative study. Research in Nursing and Health 1992;15: 227–35.

Further information

For more information on Calderdale Unique Ways (previously Parents and Carers), visit: Unique Ways .

For details on Calderdale's Local Offer, see: Local Offer for children with special needs and disabilities .

For more information on children and young people, see: Further resources .

Authors

Unique Ways (previously Calderdale Parents and Carers);
Supported by the Public Health Intelligence Team, Public Health, Calderdale Council.

October 2016.