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Advice on supporting my sibling with cerebral palsy

KateSKateS Member Posts: 4
Hi all, I would be grateful for advice from anyone who has thoughts on how best to support my sister and anyone who is further up the road of job searching, employment and relationships and has advice that might help us!

My sister is 25 and has cerebral palsy. She uses a wheelchair and needs full personal care. She is in the final year or two of completing (part-time evenings) her degree in Business and Marketing at a local college. She currently lives at home with our parents in an adapted room. They are in their 60s and 70s. There are no current plans for her to move out but I think it's been discussed that she will do 'after college' so possibily within the next 4 years.

She used to have a lot of friends in primary school. Secondary school was pretty tough, both socially and academically and I think knocked her confidence. College has been really good as a learning experience but she now doesn't socialise with anyone her age. She tends to see my parents and their friends mostly, and me when I visit monthly.

I'm worried for her about what comes next. She doesn't really talk much about how she feels about any of the difficult stuff (her CP, relationships, the future). I don't think she really talks to anyone about the challenges she has to cope with. She is a tough cookie and tries to adapt herself to be as little trouble to Mum and Dad as possible. We occasionally talk about these things but she'll only talk up to a point and then she changes the subject or cuts it off. I think she compares herself a lot to the able-bodied people (including me) she comes into contact with most of the time, and I'm sure that makes her feel worse. But equally she's not seemed interested up to now in getting to know others with disabilities.

Any advice on...
...appropriate support for a big sister to be trying to give her (and when to butt out)
...negotiating the challenges of looking for work after uni
...building up new networks of friends if the old ones from school are no longer active

I was also searching for some kind of mentor programme to link people like my sister with people in work who share their challenges and have worked through them (e.g. in her case needing a workplace that either has/would get a hoist). I don't think it exists unless you know of any?

Replies

  • Geo08Geo08 Member Posts: 49 Courageous
    Hello there! My name is George, I have a physical disability called Mitochondrial Cytopathy (which is most closely allied to muscular dystrophy). I am currently a second year law student at the University of York. I live in university halls and rely on the help of others with a number of aspects of my care but generally try to live as independently as possible.

    Firstly I'm absolutely delighted to hear about more people with disabilities going into higher education! Hopefully this opens a number of new doors for your sister and will definitely help her getting a job.

    With regards to workplaces that might have hoists, I would look towards buildings that have a changing places nearby. These facilities could be used in order to help your sister with care. I know there are many of them in big shopping centres and swimming pools. Aside from that there are a number of jobs that can be undertaken in the home which is another potentially viable option.

    When looking towards finding work, I would always suggest looking for 'two tick' employers. Most of the big banks have this certification which could link well to the business and marketing qualifications. There's a somewhat outdated list of 'two tick' employers available here:

    https://www.whatdotheyknow.com/request/160047/response/389951/attach/html/3/Disability Symbol Employer List as at 14052013.pdf.html

    My advice would be to think about the sorts of things she can do for herself. (Typing? Talking? etc.) and this could give you some guidance on what kind of work to look for. There should also be specialist advisers within your local Job Centre who might be able to help.

    With regards to socialising, I'm afraid I'm not much help. I have a couple of close friends at uni and have lost contact with most of my school friends; but for me I have enough people to talk to to pass the time. Of course if either you or your sister want to get in touch with me they're more than welcome :)

    I hope some of this has been helpful.


  • KateSKateS Member Posts: 4
    What a nice positive message to start the new year! Thank you so much, George. I don't think any of us had thought about the possibilities of workplaces being based near shopping centres or leisure centres. But that certainly would open up many more possibilities than having to put pressure on a building to install their own hoist. It's definitely an idea.

    The two tick website is useful. I've since been googling and found some specific job-search websites which employers sign up to as well. Looks like some of them are also members of the two-tick programme. And this link which might be relevant to you too about summer internships open to those in their penultimate year of uni...
    http://www.evenbreak.co.uk/employers/view/332

    Thanks so much of the offer of further chatting too. I'm not seeing my sister for some weeks but will chat with her about the above and mention that too.

    Yes, it's all super-helpful. Thank you : )
  • Geo08Geo08 Member Posts: 49 Courageous
    Sorry for not noticing this sooner, I'm still figuring out the scope community website to ensure I get emailed when replies are posted.

    Another great website is this one:
    http://www.greatwithdisability.com/

    They have aimed to form a link between disabled people and employers by engaging with both parties to break down the barriers and demystify the process. Although when I went to one of their events related to law it was mainly focussed on dyslexia and discalcular etc. despite this, the lady who runs the organisation uses a wheelchair so that might be worth investigating for advice about requesting adjustments to processes etc.

    I'm personally waiting on a number of different applications to law firms in Leeds so I will let you know my experiences as I go through them :)






  • KateSKateS Member Posts: 4
    Perfect! Yes, I think success stories are just what students need to hear as they say on that site. Will def forward to my sister as well. Thanks for the tip off about their main focus - but good to know that at least one person working for them is a wheelchair user as yes she might have overcome some of the same logistical issues as we'll need to.

    I'd be really interested to hear your experiences with those applications - from what proportion you hear back from to what interviews are like. Very interested indeed. So if you do have time to drop an update that would be great!

    Had a chat with my sis this weekend and she's not really in the headspace for job stuff right now as she's got fiendish assignments due at college. But she did say that she might like to be in touch at some point.
  • newyorkgirlnewyorkgirl Member Posts: 4 Listener
    I got my current job as a result of the two ticks scheme. Work had to make some adjustments in terms of access around the building, but they can get funding for this. I know locally to me, the main council offices have Changing Place facilities, so that maybe another option for your sister.
  • KateSKateS Member Posts: 4
    Thanks very much. That's useful to know they can get some funding - and that council offices are also a venue with the right type of equipment. Very helpful : )
  • EllaBEllaB Member Posts: 35 Listener
    I just wanted to say what a lovely big sis you are! Even though you say your sister doesn't talk much and tends to cut you off after a while, I'm sure she really appreciates you taking such an active interest in her life. As a sibling myself, I think it's a really important role as we can offer support in a very different way to our parents, and we will almost certainly be in our brothers' and sisters' lives for a lot longer too. I don't know if you already know about the charity Sibs, which is for brothers and sisters of disabled children and adults, but you may want to contact them to talk about helpful ways of supporting your sister too: https://www.sibs.org.uk/
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