Disabled children: balancing childcare

When you become parents, you’ll need to make some decisions about how to divide up work and childcare responsibilities, taking into account the level of care your child requires.

Before you make any assumptions, take some time to discuss your hopes and expectations with your partner. Many parents fall into traditional gender roles with women taking on the majority of childcare duties, even when the relationship was equal before parenthood [1].

A traditional setup may suit your family, but it may not. Have a conversation and make the decision as a couple, rather than drifting into roles you feel you’re supposed to fulfil [2]. Getting this balance right early on can help you establish a suitable routine for your child’s care and give your relationship quality a positive boost.

“Making sure I kept my professional working life going [helped us most], even though it has been a real juggling act. It has kept my sense of identity rather than being ‘only’ mum to my disabled daughter and kept me fulfilled – so I think I'm more interesting to live with!”
“[Work means] sanity. If I constantly stay in and have my life being revolved around the children and the house I think I'd go mad. [Work] brings out the creativity in my mind… I feel that I've found my niche and I'd really hate to lose it, but I've always been a carer… and I just wanted to be myself… and I am myself when I'm studying or when I'm at work”.
Sharing the care


For many parents it’s not possible to share things equally, so try to be patient and understanding with each other. If you are the main carer, remember that your partner may take longer to learn new skills. If you are not the main carer, be prepared to learn from your mistakes so that your partner isn’t left feeling like they have to do everything.

If you have access to shared parental leave, consider taking off as much time as possible together. This will give you more time to get acquainted with your child’s care needs as a couple. Making the most of these opportunities to spend shared time at home can help increase your understanding of, and confidence in, each other. This can lead to more effective co-parenting and better relationship satisfaction [1] [3] [4].

“We know that we have to get on with it – we try to respect each other, learn from each other, laugh at one another and love one another. Oh, and on the odd occasion that we get a good night’s sleep we do all the above, with value added”.
Balancing work and family when you have a disabled child


Some of the main obstacles to working include:

  • The unpredictable nature of certain conditions.
  • Difficulties getting time off for hospital appointments.
  • A lack of understanding from employers.
  • Problems finding suitable childcare.

Many parents want to work not just for the income it provides, but because working gives them the opportunity to make new friends and develop skills outside of their caring role. It can offer a space to recover from the stresses of home and family life, as it provides a change of scene from the often-frustrating demands of parenting a disabled child [5]. But others may approach it more like an obligation that takes them away from family life.

“I come home tired and then I have to face caring for our child and I have a stressed partner to deal with”.
“My partner helps a lot in the house and does the main caring plus a job. But we always worry about the future”.

As parents, it isn’t always easy to strike a satisfactory balance between work and family. If you are working and your partner is on full-time childcare duty, you might feel like you have the tougher role, feeling excluded from daytime appointments and unable to provide support to a partner who cares full time. While work can of course be stressful, try to be sensitive to the idea that your partner may be feeling a different kind of pressure from being on constant parenting duty, and may feel resentful and isolated without the change of pace between work and home [5].

“There is a great deal of resentment – I resent that he doesn’t recognise the colossal effort I put into co-ordinating schedules, visiting school and fighting continuous battles to get what our son needs”.
“Because I have to go to work they think it's a rest. They don't see that you are the one living with the child”.

One way to avoid these tensions is to recognise each other’s contributions. If you are out at work all day, you can help your partner by showing an interest in, and an understanding of, their work at home.

If there is conflict over who does what, find ways to share the work. Make sharing tasks part of everyone’s daily routine – adults and children. Make arrangements to cope with the practical aspects of your family’s daily life and troubleshoot problems in advance. This can help keep some of the pressures and stresses off your relationship.

“One parent in our relationship is the investigator, explorer, questioner, driving force, and the other keeps the home fires burning and brings perspective to ideas that can be outlandish”.
“Faith, love, grace, compassion... all these are present and manifest and we are close and love each other and feel fortunate too – but it's still a hard journey to face”.
Working and childcare


If you are both working, it can be a real struggle to balance things. Getting good quality appropriate childcare may affect the type of work you are able to do – and you may have to work extra hours to cover childcare costs or give up work to cover childcare yourself [5].

Distressingly, childcare is often a major obstacle for parents. Despite local authorities having a responsibility to ensure the provision of good quality childcare, many families caring for a disabled child still struggle to find appropriate childcare. Problems can emerge not only in paying for childcare but also in finding suitable childcare for your child.

“I would like to work, if there was affordable and available childcare to look after my children with severe autism and learning disabilities”.

You may find it helpful to talk to other families who have a disabled child to find out about their experiences of using childcare. Professionals you have been working with may also have some insight about suitable childcare providers in your area.

In certain circumstances it may be possible to get help with childcare costs via working tax credits or via Universal Credit. It may also be possible to use direct payments to arrange childcare. Through the direct payments scheme, local authorities can give cash payments rather than a service. This can enable working parents to employ someone to look after their child after school. Direct payments can even be used to pay a close relative, although only in exceptional circumstances if they share your household.

There are laws around childcare that local authorities and childcare providers must follow. If you’re struggling to find suitable childcare, or a setting has refused to take your child, you can use these and other laws to help you change the decision. You can find information and template letters to challenge childcare decisions on Contact’s website, plus a guide to help you understand your rights to childcare if you have a disabled child.

It can make things easier if you’re able to arrange to work more flexibly. Under UK employment law, you are entitled to request flexible working arrangements, and your employer is obliged to consider your request seriously [6].

“I was working full time but it was too much. My employer was and is brilliant and allowed me to change my contract to term-time only, 18.5 hours”.
“Getting a nursery place for my daughter when she was three made her transition to school much easier, as she had friends who understood her disabilities. It also helped me get back to work sooner, before I lost my confidence about being out of the job market”.
Parental leave and other help at work


Parental leave
gives parents the right to take time off work to look after their children. Parental leave is normally unpaid but some employers have more generous provisions. Check your contract of employment. Both parents have the right to parental leave, so you each can take up to 18 weeks leave per child, to be used before the child's 18th birthday. Normally you have to take parental leave in blocks of one week or more, but parents of disabled children can take leave a day at a time. This means you could use parental leave for regular hospital visits.

Time off for dependents


You can also take time off work to deal with an emergency relating to a dependent, which includes your disabled child. It only covers the time taken to make alternative arrangements and any leave you take will be unpaid unless your contract of employment says otherwise.

You are allowed time off if your dependant:

  • Is ill and needs your help to provide assistance or to make arrangements for the provision of care.
  • Needs you to deal with an unexpected disruption or breakdown in care such as a childminder or nurse failing to turn up.
  • Is involved in an unexpected incident at school that you need to deal with.

You cannot take dependants leave to deal with a situation that was foreseen or planned. In these situations, you would need to take parental leave, annual leave or other any other available leave.

For more information about your rights to childcare and in work, see www.contact.org.uk/work-childcare.

“Neither my husband nor I can imagine life without the other – neither of us could cope with the children without the other's help. There is a bond between us that can never be shared by anyone else”.
References


[1] Gao, M., Du, H., Davies, P. and Cummings, M. (2018). Marital Conflict Behaviors and Parenting: Dyadic Links over Time. Family Relations DOI:10.1111/fare.12322.

[2] Jansen, M. and Liefbroer, A.C. (2006). Couples’ attitudes, childbirth and division of labour. Journal of Family Issues, 27 (1), 1487-1511.

[3] Kolak, A.M. and Volling, B.L. (2007), Parental Expressiveness as a Moderator of Coparenting and Marital Relationship Quality. Family Relationships, 56(5), 467-478.

[4] Rehel, E. (2014). When Dad Stays Home Too: paternity leave, gender, and parenting. Gender and Society, 28 (1), 110-132.

[5] Brown, T.J. & Clark, C. (2017). Employed parents of children with disabilities and work family life balance: a literature review. Child Youth Care Forum. 46: 857. https://doi-org.uos.idm.oclc.org/10.1007/s10566-017-9407-0

[6] HSBC (2012). HSBC lends a hand to back‐to‐work parents: Employees guaranteed part‐time work after maternity or paternity leave. Human Resource Management International Digest, 20 (16-17) https://doi.org/10.1108/09670731211249341

 

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