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The working world isn’t built for those with care needs

machoomachoo Posts: 2Member Listener
edited January 17 in Guest blogs

My name is Matthew and I’m 25 years old. I have limb girdle muscular dystrophy and I’m a powerchair user. I am a writer but also, I work full-time as a customer service advisor.

Trying to gain employment

As a disabled person I’m often encouraged to be independent and congratulated for being so. But over the last year I learnt that there are discrepancies between the various services I rely on to allow me to live an independent life.

landscape picture of matthew in his powerchair looking into the distance

Early last year I suddenly found myself jobless and without a carer. There was no way around it, I would have to apply for Universal Credit. Part of the process is immediately attending Jobcentre appointments and filling in a booklet, documenting your 35 hours a week job searching.

After a few weeks I do find another job. It’s another customer service job, the only kind of job that is really pushed by welfare-to-work providers on disabled people. This is due to plenty of positions being available regardless of your educational background.

Managing your care needs

If you’re disabled and living on your own like me, you might rely on carers. For me they’re essential to get me up in the morning, get ready for work, and to provide personal care in the morning and evening.

One day I discovered that I could get personal care for free. I don’t want to think about the months spent faffing about when I could have been receiving care, but I was just relieved that I could finally not rely on my friends and family every day to live my life. I’m lucky I have this support network, not everyone does.

So, I accepted the job I was offered. But like lots of call centre jobs, I could start as early as 8am and finish as late as 8pm, it varies from week to week. However, carers must stick to the same schedule each week. I had to arrange one call at 6am every morning and one at 10pm every evening, so that I’m never late for work and don’t have to wait too late for them.

I can cancel the carers if I’m out past 10pm, but I have been sternly told off by one of the carers about cancelling too many times. I was told the council will just cancel my evening call completely if it wasn’t always used. Both of my calls are dealt with by the night shift, which is separate from the day team. There are fewer carers on this shift and it is more complicated to organise care with them. It’s almost as if the council do not expect that a disabled person would need to get up at 6am to go to work.

Matthew sat at a table smiling at the camera

The endless battle for independence

It’s become clear to me that the systems that allow disabled people to have a quality of life are not built for people like me. The structure of Universal Credit encourages you to work whether or not you can. Once you do find a job, it is complicated to find affordable carers that allow you to get to work.

The benefits system pressures you to be a productive member of the workforce, whilst the council expects me to have no life, unable to accommodate the working hours you would expect a disabled person to have, and treated like an unruly child for daring to have a social life.

This is a complex problem with no easy fix. Do they want disabled people to work? Are we encouraged to go out and be productive tools in our economy, or to stay at home? Of course, our care, benefits and employment should suit us whoever we are. Yet even when you play by the rules, you must jump through so many hoops for a quality of life. To me, this instinctively seems wrong.

If you would like support getting into work then take a look at Scope's employment services to see how we could help. There also is employment information on our website.

You can follow Matthew's journey on Twitter.

Have you found it hard to manage care needs and employment? Are there things you believe need to change? Let us know in the comments below.

Replies

  • April2018momApril2018mom Posts: 2,620Member - under moderation Disability Gamechanger
    Hello 

    Yes. I am not sure what will happen to my son when I and my partner are gone. I have started researching employment options for my son. He has a physical disability. One day he will live alone. But that will not happen for at least ten more years to come. 

    I am considering redoing my will but have not done so yet. How do you promote personal safety and develop independence in a purely physically impaired child? I really need some helpful advice on this particular issue. He is now three years old. Tips needed pronto. I do not wish to baby him at all. 
  • Chloe_ScopeChloe_Scope Posts: 6,556Administrator Scope community team
    edited January 9
    Thank you for writing such an interesting piece @machoo! It must be so frustrating with your carers, I just hope they don't remove hours! 
    Chloe
    Online Community Officer
  • pollyanna1052pollyanna1052 Posts: 1,509Member Disability Gamechanger
    I fully understand your troubles with carers and what the council will and wont pay for. Just had a few rounds with them myself and I`m retired!

    They insist on lumping you in with everyone./anyone else.

    People are individuals..not a gaggle of geese! We each need and deserve to have a say in our lives. But when you ask for help..yes...you do have to jump through THEIR hoops.

    Good on you for trying to work and be productive. I truly hope things improve for you lad.
    Pollsxx
  • GeoarkGeoark Posts: 1,223Community champion Disability Gamechanger
    Hello @machoo and welcome to the community.

    Check the terms and conditions of your care package or speak to the manager at the council. If the carers' contract is zero-hours, this may explain their warning rather than being guided on your care package.

    Unfortunately, the Universal Credit system assumes that work is always a preferred outcome and staff push for this. JSA was terrible enough having attended interviews I knew I was not suitable for and having to explain to the interviewer why I applied. I was threatened with sanctions if I did not.

    It seems, from your post that working in a call centre may not be your first choice for a job.

    Several colleagues I have worked with started in call centres and then moved on within the company. Jobs ranged from income officers, housing management, and developing and building new estates. It is always worth keeping an eye on what opportunities are available that you would be interested in and what they require. Good communication skill, along with some necessary IT skills, can open up a lot of job opportunities. For example, it may be taking time to improve your Excel skills. 

    Try looking for secondment opportunities if they are available. These are fixed-term temporary contracts within the organisation, allowing you to gain experience doing something else. It also gives you a better idea of what the team does. Your first job remains safe, and I have known for these to become permanent for the right person. At a minimum, it gives you something else to add to your CV.

    For some reason, new jobs have always been more accessible while working. Better working hours could improve your social life and care, though as a young adult being home by 10 pm every night is a restriction.



    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • Bee_roseBee_rose Posts: 10Member Listener
    This is a great piece, I agree the system seems to be pretty terrible, and it seems like it's bad for the carers and the people who need care. I wonder if you're able to have direct payments? I've heard of people advertising on local community boards as an employer, if you're having a few hours of care a day it might be that you'll be able to find a student or someone who wouldn't mind unconventional hours that way? I've even heard of people making the accounting side of direct payments their carers job as well so that might help too. Just a thought! Might mean you get a little more choice over who comes to help you out, and as their employer it's unlikely they'll try and tell you off! ;)
  • machoomachoo Posts: 2Member Listener
    edited January 11
    Bee_rose said:
    This is a great piece, I agree the system seems to be pretty terrible, and it seems like it's bad for the carers and the people who need care. I wonder if you're able to have direct payments? I've heard of people advertising on local community boards as an employer, if you're having a few hours of care a day it might be that you'll be able to find a student or someone who wouldn't mind unconventional hours that way? I've even heard of people making the accounting side of direct payments their carers job as well so that might help too. Just a thought! Might mean you get a little more choice over who comes to help you out, and as their employer it's unlikely they'll try and tell you off! ;)

    I do have a couple of contacts I’ve found on the website care.com who have been really helpful but as you say they’re either students or have other clients and also their own lives so you need to work around them. Also getting dressed and in and out of the chair really requires two people, and it wouldn’t be wise of me to cancel any calls for the reasons in the article. But for stuff that falls outside of the remit of ‘personal care’ such as washing up, taking bins out, preparing food, they’ve been really helpful :) 
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