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How employers can adapt to meet the needs of carers

Published: 15 Jul 2019

Clare McIntosh is mum to three gorgeous children and has worked full time for the last three years since joining her company as part of the Carers Returner Program.  Her son has Down Syndrome and she was given the opportunity during Carers Week recently to share her experiences and thoughts on how employers can adapt to meet the needs of carers. 

‘a crucial part of diversity’

How can employers adapt to meet the needs of carers? I think that this is a crucial part of diversity.  Only 3% of mums of disabled children work full time today and only 16% work at all [1].  The event of having a child with a disability is a huge block to working at all, never mind to career progression.  I think because so few carers work, there isn’t a strong voice in the workplace about the accommodations that are needed.  But there is such a great opportunity for employers to take leadership here and make a real difference.

Down Syndrome is a very quirky diagnosis to be honest.  Whilst classified as “disabled”, my son is really “differently abled” with every part of his body working slightly different to the norm.  It is up to society to make him abled or disabled based on whether it can adjust to suit.  Some examples are

  • Josh’s eyes work differently.  Not only does he need glasses, but all people with Down Syndrome have lower visual acuity – essentially the depth of colour isn’t as great for them.  So Josh probably wouldn’t see writing with a pencil, it’s not bold enough, writing for him needs to be in bold black type.
  • His muscles throughout his body have a much lower resting point than ours, which makes them much harder to use.  People with Down Syndrome are often known for having flat cheeks – this is because their cheek muscles have a lower resting point than ours making them look flatter.  In addition, they often have a single palm crease in their hands.  Our hands have many creases from being gripped tight in the womb, but Josh’s were probably just folded.
  • His ability to remember auditory instructions is reduced.  His ability to learn and remember is much increased by having visual messages.
  • His hearing is reduced due to chronic glue ear – fluid between the inner and outer ear.  So we need to treat him as though he has a level of deafness (eg we sign), and he benefits from Bone Assisted communication tools.

I could go on and on, but hopefully this shows how complex the condition is and why therefore as a carer, we need to think through every element of his life, making appropriate adjustments to suit him.  Looking after Josh is actually more than a full time job, because he not only needs close attention during waking hours (sadly sometimes sleeping ones too), but because we constantly have to make preparations ahead of time to ensure things will work for him.

Being a parent of a child with Down Syndrome has other complexities.  First – you have deal with a lot of society assuming that you are somehow responsible for this outcome.  I can’t tell you how many people ask my age when I was pregnant and how many people assume we made conscious decisions towards this outcome.  But, whilst I was in my 30s and the average age of having a child with Down Syndrome now is lower than the average age of giving birth, and we did have all the testing in pregnancy, it just happens that the testing is not 100% effective and we were given chance of 1 in 5,500 of Josh having Downs.

‘like parenting a rock star’

There is also a huge conflict in that, as a parent, you know how completely fabulous people with Down Syndrome are.  I really see parenting Josh like parenting a rock star.  He is a huge amount of fun, very charistmatic and affectionate, completely driven and inventive and breathtakingly unpredictable.  Most people who know him, see this too.  But there is still the reality that 95% pregnancies with Down Syndrome are terminated because they have Down Syndrome.  So as a parent, you feel a pressure to educate, and to show the positives.  All those positives are true, but it still is challenging.  I’ve found that a hard line to walk.  If I talk about any of the challenges, I’m afraid I’m being disloyal to my son and increasing the perception that having a child with disability is too hard.  But at the same time, there are challenges, and flexibility is needed. You have to share to a degree so that people understand why it’s important.  A final challenge is that when you are open about the extra load, it can sometimes be assumed that you’d be better off not working.  But, and I’m sure many mums will relate, even when you have children, you still are the person you were before.  You still want to be challenged intellectually, you still want to work with smart, creative and inspiring people.  You still want to be the best you can be.  So maintaining you career is a critical part of still being you.

‘there needs to be further change’

Flexible working is absolutely vital to support carers and I think there needs to be further change if we are going to make full time working an option for more than just the 3% who do today.  Some of my thoughts on this are:

  1. We need to widen our support for time off from urgent situations to important situations.  Today, all parents are entitled to reasonable time off to attend to an emergency, but as a carer so many of the critical things you need to deal with aren’t actually emergencies.  The most extreme example of this was a friend whose child needed open heart surgery.  The surgery was planned, therefore not an emergency and she was advised she would need to take holiday to be with them.  It seems very unfair that parents can take paid emergency leave if their child has a sore throat, but do not have access to paid leave when their children are in life-threatening or life-changing situations.  The current exception to this in law are antenatal appointments.  Expectant mums are entitled to paid time off to attend these, even though they are not emergencies, but because they are very important.  I think there is scope to expand carers’ rights to give time off for important situations the same status.  Working Families is calling for a paid period of ‘adjustment’ leave for parents of disabled children they could use alongside any future paid parental leave entitlement.
  2. Protection of flexible working rights.  Today employees can request flexible working but this is at the discretion of their manager.  Consequently they may not get approval, or they could lose their rights if they change roles or even if they stay in role and a new manager comes in.  Today some companies are introducing Carers Passports – documents which record what has been agreed which accompany the employee through the organisation protecting the agreed flexibility.
  3. A Carers Champion.  Carers have distinct challenges and it’s important that there is a role model sponsor who can drive the commitment of the organisation to support carers.  Even better, if that person is a carer themselves who can really empathise, and provide guidance on how to balance everything.

Thanks to my employer for supporting Carers Week and for being an employer that encourages us to “break the silence”.


[1] Papworth Trust disability facts and figures 2018

About Waving not drowning

Working Families runs the Waving not drowning network for parents of disabled children and carers of adults who want to combine paid work with their caring responsibilities. It provides a helplineregular e-newsletters and occasional events and publications.

Waving not drowning also have a Facebook Group where carers or parents can get support, share their experiences, and ask us questions.

The helpline for free advice and questions about work and caring is 0300 012 0312.


2 responses to “How employers can adapt to meet the needs of carers”

  1. Amber says:

    It’s lovely to read the views of another working mum with a SEN child.

    I work full time and have a SEN toddler. It’s quite a lonely place to be. My colleagues don’t understand my need for time off, and I feel a lot of my son’s specialists judge my choice to work. This is because this is not the norm.

    Parents should be encouraged to work. It benefits my son to be away from me and to socialise with other people, as much as it benefits me to be able to pay my mortgage!

    There needs t be so much more support from the LAs and from employers to create a environment where SEN child are safe and happy away from their carer, and parents can still juggle the emergencies and regular appointments.

  2. Felicity Whyte says:

    Thankyou for writing this.

    I also work fulltime, and although my son doesn’t have Down’s Syndrome his needs are quite complex and difficult to describe in terms of impact.

    Childcare is a huge challenge!

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