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Hi, my name is LChase!

LChaseLChase Posts: 2Member Listener
Hello, 
 I have just joined the community. I am the mother and carer for my daughter who is 31. I hope she will join too. My daughter has epilepsy and cannot walk around on her own but always has to have someone with her in case she suddenly falls caused by sudden seizures. She has them on a daily basis. I'm hoping to get advice for the new kitchen and shower room which we are about to get built.

Replies

  • Sue52Sue52 Posts: 74Member, Community champion Talkative
    Good morning, 
    Welcome to the Online Community and I hope you are having a good day. You will find great support and excellent advice on this site. I am sure someone will be along very shortly to help you 
    Have a great day 
    Sue 

  • Pippa_ScopePippa_Scope Posts: 4,907Administrator Scope community team
    Hi @LChase, and welcome to the community! Great to have you here, and it would be lovely to welcome your daughter too.

    Do you want to tell us a bit more about your situation and what advice you need so we can offer some guidance?
  • LChaseLChase Posts: 2Member Listener
    Hi Pippa,
    We are having a new kitchen extension and shower room with toilet and this is so my daughter can access these better using a chair or over toilet commode. We have been waiting for over a year for an appointment with the local authority OT and our extension is soon to be built (end March/Apri) I have got some advice about where to go for ideas but really need an OT's input as well. I have explored private OTs and have found a possible person but I'm holding back as the expense of a private OT is very high. I would just like someone to help me design it all for my daughter. + does anyone know where one can go to see Disability eqiupment set up  to help decide and choose? in London?
  • Pippa_ScopePippa_Scope Posts: 4,907Administrator Scope community team
    Hi again @LChase, thanks for sharing this. We have a great OT on the community, and I've moved this into her category in the hope that she can point you in the right direction. In the meantime, you might also want to see if you're eligible for any grants to help fund the work. 
  • Jean_ScopeJean_Scope Posts: 519Member, Helpline, Community advisor Chatterbox

    Hi @LChase

    This is tricky. Your best option really would be for your daughter to have a home assessment done by an Occupational Therapist (OT).

    Ideally an OT should be able to review what your daughter’s needs are and make suggestions about the best solutions to enable her to be as independent and safe, as possible, within your proposed extension. Taking into consideration practicalities such as budget, space and your daughter’s future needs.

    However, I am aware, as you have pointed out, that waiting lists to see a community OT can potentially be very problematic. Also I know some community OT’s feel limited to only being able to discuss what they can recommend within the constraints of the Disability Facilities Grants Scheme https://www.scope.org.uk/support/disabled-people/disabled-facilities-grant ), rather than what might be the best solution if people are able to self-fund.

    You mentioned the possibility of engaging the services of a private OT. Private OT’s can often be found via this searchable directory: https://www.rcotss-ip.org.uk/find

    Private OT services aren’t cheap but are often a good investment and can sometimes save people from spending money on inappropriate equipment or adaptions.

    Obviously as an OT myself I recognise the value of my profession, but if you prefer to go ahead without professional support, there is an interactive website that can assist with identifying suitable equipment and listing retailers it can be obtained from: https://asksara.dlf.org.uk/

     

    Some people like to have opportunity to see equipment in person before they decide what to purchase. Around the UK there are a number of Independent Living Centres (the contact details of many of these are listed at: http://www.focusondisability.org.uk/dlc-2.html ) The Centres often have mock-ups of rooms displaying adaptations and equipment. If you are thinking of attending a Centre do contact them first to ensure that they have the sort of equipment you are interested in.

    Another way of viewing some of the latest equipment is to attend a disability trade show, such as Naidex: http://www.naidex.co.uk/

    Equipment specifically intended for disabled people should be exempt from VAT, as is some building work. This is explained in detail on the Gov.UK website:  https://www.gov.uk/government/publications/vat-notice-7017-vat-reliefs-for-disabled-people/vat-notice-7017-vat-reliefs-for-disabled-and-older-people If you need clarification of a VAT matter HMRC have a helpline about VAT for disabled people: 0300 123 1073

    On the subject of money, it is sometimes possible to get charitable grants towards the cost of aids and adaptations that can’t be obtained from statutory sources. Scope isn’t a grant giving organisation but on the Scope website there is a grant search tool which can assist with identifying organisations that may be worth applying to: https://www.scope.org.uk/support/disabled-people/search-grants

    Some people who are arranging their own building work decide to employ the services of specialist architects. The Centre for Accessible Environments can signpost people to specialist firms: https://cae.org.uk/

    We are regularly contacted by people seeking basic information about home adaptations for wheelchair users, such as door widths and ramp gradients. We have found a free downloadable design guide published by the Occupational Therapy Service of Portsmouth City Council which addresses many of these queries: https://www.portsmouth.gov.uk/ext/documents-external/pln-dev-affording-housing-wheelchair-access-plan.pdf

    I hope this information is of some assistance, please don’t hesitate to contact me if you have further queries.  

     

    Best Wishes

    Jean

    Jean Merrilees BSc MRCOT

    Information Specialist - Enabling Environments

    Scope

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

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