Employment as a parent Carer – what helps/doesn’t help

In March we ran a quick survey and a few webchats to find out about the issues carers face around finding employment and staying in employment.

Over the next few weeks, we will share some of the feedback we received.  A huge thanks to all who took their time to share their experiences with us.  We will also be sharing what your rights are as a carer and the things you can ask for.

What is in place to help you to stay in work?

We asked parent/carers who were in employment, what was in place to help them stay in work.

What helps with employment as a carerWe had some really supportive employers – showing us what can be done when people are inclined to help.

Flexible working

    • Support from my professional body.
    • Professional/ Specialist support e.g. SALT, OT etc.
    • Family, wrap around care at school and holiday clubs.
      • Agreement that I don’t need to take leave to attend meetings about my son.
      • Work a 4 day week. (34 hours over 4 days). Flexible about letting me swap days for SEND-related (educational/medical) appointments.
      • I work from home on a Friday, and have a nanny who helps with before and after school care.
      • Employer being flexible with me, school paying for the lifts we can’t do.
      • I work part time and school day hours.
      • Very part time hours in evenings, virtual learning environment means I can login to almost everything from home.
      • flexible working hours
      • A very flexible working week with the ability to work from home
      • Working from home
      • I work part time. I do annualised hours so basically I can work more hours during school terms and work less hours during the school holidays.  I have worked for the NHS for over 10 years consecutively  so I’ve had the advantage of very generous annual leave (8 weeks)  on occasions when I’ve had to stay home with a poorly child I’ve been able to do some admin work from home. My manager supports me. Other colleagues are parents too so there is understanding. My husband works for himself so he is usually able to help out with kids taking ill unexpectedly for the odd day or two
      • Part time hours and the fact that my husband is self employed and able to be flexible to do school runs and appointments etc.
      • Working part-time
      • Flexible working hours
      • Decided to study at home so can be there for my son who misses lots of school
      • my work allow me as much time off unpaid for all hospital appointments, they also give me my shifts to suits the  kids
      • Flexible working from work to get to all appointments
      • My husband and I both work part time which helps and we have an after school nanny.
      • They accepted changing my contract to lower hours.
      • casual nature of employment…. I work when I can and not when I can’t
      • Flexible hours, understanding colleagues, supportive husband and parents who juggle own work to help when needed
      • Flexiable working. I am required to work 37 hours a week, but I can work hours that fit around my family, work from home and have up to 2 days flexi leave. Also some of my colleagues work compressed hours.
      • Great boss and part time flexible working from home. Work for a dutch company, UK ones less supportive.
    • Finance:

      • Tax credits
      • Direct payments to employ PAs for my son.
      • PA support and benefits for disabled person/child.
      • Benefits and charitable funds
      • A very lengthy and costly battle for a residential school package. Childs wellbeing was the driving force for this not wanting to work
    • Understanding and Support:

      • Very understanding direct boss.
      • Understanding that I am not expected to work evenings and weekends if I’m unable to due to caring responsibilities.
      •  Support from other parents and friends

What makes it hard to keep working?

Exhaustion and Stress:

  • My wife and I are both constantly extremely tired because when I’m at work she’s on her own with the children one of whom is severely autistic, then when I come home I don’t get much rest either to speak of. Performance at work has been affected, have had not that great performance appraisals, have felt like the “weakest link” in my team due to being too tired to do fast-changing mentally demanding work effectively
  • I have to get up at 4.45 to drive 35 miles to work to get there for 7am.
  • Having appointment and needing time off work. Lack of support and understanding from co workers and employers.
  • Lack of flexibility and care for me. When I’m exhausted compared to my co workers I’m truly exhausted. I have a battle just to get to work.
  • The demands of my child
  • The fact that I am juggling commitments all the time

many of my “days off” don’t feel like “days off”… 

  • Stress
  • Tiredness
  • Can’t be reliable, find stress of raising a child with additional needs uses all my time and energy

Sickness, number of meetings

  • It’s always the inflexibility or sickness of child.
  • The number of meetings with social services and the SEN team.
  • NHS not being flexible with appointments for a working parent.

So many hospital appointments.

  • Child who is ill a lot
  • Appointments
  • Kids sent home from school
  • meetings and appointments
  • Sickness, having to make emergency plans, trying to get appointments not in the middle of the day to make work easier.
  • Children’s continuous appts, both my children are disabled. Lots of sick days with the children and exhaustion from trying to parent and work full time. My work is not very supportive. I work for the NHS!

School issues:

  • No part time options or term time working options in my current role, although I have been told if I make a formal proposal it would be considered.
  • School not dealing with toilet issues
  • Not being able to communicate with staff because he is wrap around.

Staff not understanding his condition or how it effects my son

  • son only being in school 4 hrs a day
  • Reflux. Child would be sent home from school unecessarily. School began to fail the child forcing us to look for alternatives.
  • Daughter does limited, unpredictable and fluctuating hours in school & needs a lot of care so very little mental & physical energy to carve time out to work.
  • Unexpected issues with school

Childcare, PAs

  • Childcare
  • Lack of Child care for older SEN children

Childcare for children with special needs is difficult or impossible to find.

  • Finding the right PAs locally and managing their recruitment/training/retention, which is like running a small business in itself.
  • No childcare for Sen child
  • no childcare for a boy with suspected asd/pda behavioural issues
  • If our Nanny is ill. Or if our child with additional needs is ill. Lack of provision for school holiday playscheme for children with disabilities.
  • I can not find childcare for my son. Childcare available only with non ofstead providers that are extremely expensive. £14 an hour.

The other stuff no one considers:

  • Difficulty in managing household tasks while working full time, especially as these need to be done while my son is at school due to his sensory sensitivities.
  • Trying to fit everything in, especially when we were trying to get a Dx and had multiple assessments to attend in order to get the Dx and an EHCP. Looking ahead, trying to work with the school to ensure my son’s needs are understood and met (they change over time). Also preparing for the EHCP annual review to ensure that it accurately states the right provisioning. All of this takes time.

Challenges of staying up to date with essential skills/practises/procedures both in relation to my profession and also in relation to the rights and services/provision to meet the needs of disabled people and their families.

  • Medical-model systems/structures/services/attitudes, segregated provision, isolation.
  • At work they don’t always allow parental unpaid leave . The policy say that they do in my company but they push me to take it from my annual leave
  • When the kids need me but i cant afford to take yet another day off
  • other collegues complain about the amount of time off i need and why i only do certain shifts

Next week, we will be looking at what would make it easier and why going self employed is the only option for many carers.

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Debs Aspland

Mum to three great kids, each with a different SEN. Transplanted from the NW to the SE. Co-founder and Director of Bringing Us Together

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