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Living alone in wheelchair vs assisted living?

Rifi7
Rifi7 Member Posts: 198 Pioneering
Is there a wheelchair user who lives alone and is in a adapted property who can advise if they can cope in their property with the adaptions?

Is there anyone who lives in a assisted living property (24 hour warden controlled) who can tell me if this better for them then living in a adapted property?

just trying to weigh our the pro’s and con’s in both, so if anyone has advice it will be very helpful
Thank you.


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Comments

  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,384 Disability Gamechanger

    It may be helpful if you take a look at https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/moving-to-a-new-home-housing-options/ and be clear if you are talking about sheltered housing or assisted living.

    While it talks about the elderly, there are similar options for those who are younger with disabilities.

    Main differences though, sheltered housing provides a warden - though, with the changes caused by UC, some housing associations are shifting to concierge services which have some variations - daycare still needs to be arranged. With assisted living, care and cost will depend on how much support you need.

    Assisted living - costs can vary a great deal, and you will need to know how you will pay for this, especially if you expect your care needs to increase. If you own your own home and can sell, you may be able to use the money to offset future costs. Renting or buying you will need to look at service charges. The same applies to sheltered housing but likely to be lower. Unless you are generally financially independent, assisted living is unlikely to be an option. An alternative if you own your home is to rent it out while your costs are lower, and sell later if you need to. As a landlord, you would have specific responsibilities. A reputable third-party agent can resolve these issues, for a cost. However, never take a big decision concerning your home without getting expert advice first.

    In all three cases, living in your own home, sheltered and assisted living the property you are in should be working for you, as each encourages independent living for as long as possible. Sheltered housing and assisted living provides a potential advantage of not becoming socially isolated, but this depends on your ability to get out, even if it is just to a communal hall or facilities. A lot depends on what is important to you and what you can afford. If the main concern is to have someone available if you suddenly need help sheltered housing may be a better option than assisted living. If you live in your own home and it works for you, there are services you can opt into which would get help to you quickly and in some cases someone who can talk to you until help arrives.

    I know this may not be what you were looking for, but hope it helps.

    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!

  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi Rifi, I expect you are weighing everything up in anticipation of your move to the seaside, eh?

    If like me, and I think you might be....wheelchair bound (awful word) and unable to get out of it unaided, you`ll need to be able to press a button, or dial a number and help will come ASAP, yeh?

    I think wherever you live, you`ll need the place to be totally wheelchair friendly. Will you have carers still?

    I once read that care packages are transferable, but they may be changes to that rule.

    Best discuss it with whoever runs that for you...is it Direct Payments?

    They or you will probably need to speak to the local authority where you are moving to.

    It`s lovely to get all excited about  a move......until you have to think about the practicalities.

    I`m crossing everything for you xx.
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    Hi Pollyanna,
    Yes I was all ready to move near my sister in West Sussex but then my sister said she may move in a few years time, so it made me feel will I be uneasy. My mum has dementia and is down in London, so it would mean I would have to rely on my sister to bring me down to see my mum. Also I didn’t take a lot of factors into account that have now been brought to my attention since I have been looking into moving. 

    Yes like you I don’t like the words wheelchair bound, but that’s what I will be very soon. Due to nerve damage in my spine, I’m rapidly losing sensation in my legs. I live alone and although it’s all gone ahead to get the adaptions done in my flat I’m concerned that when I decline, that the flat will no longer meet my needs and I will have to move to a assisted living property, that have 24 warden control. 

    I’m only 49 and I do wondered if moving to an assisted living property would be right for me because although they would offer me the security of someone be on hand, I wonder if the environment would be right for me. 

    I have to make a decision soon as once the adaptions are done I would have to live in my property for five years.

    I don’t know what to do for the best.

  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    Hi Geoark
    Thank you for your response.

    I don’t own my own home. I have a carer that comes every day and I have had a occupational therapist who has spoken to the landlord to get the adaptions done but once the work takes place I would need to stay in my property for 5 years but I’m worried that my condition will worsen to the point I can’t cope in my flat. It’s all the unknown. I live alone so it’s worrying me.

  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,384 Disability Gamechanger
    Hi @Rifi7

    May I ask, does the adaptations include making your home suitable for a full time wheel chair user? Are your worries specific or general?

    If your concerns are more specific it is easier for members to reassure you, or offer advice. 

    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!

  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Oh Rifi...and I thought things were gong well....as you did.

    Flumming fluppers! Looks like the move to the seaside is off then does it? If your sis wont be there to help you, then are you put off altogether?

    I do get why you are unsure about moving to a place that might be more suited to older people. Can your social worker find out if there are complexes where not so old disabled people live?

    Mmmm, a right 2 and 8 this decision is now for you.

    pollsxx

  • Garza
    Garza Member Posts: 149 Pioneering
    I live independently, with the caveat that I get help with certain things from family, personally I would like to stay in my own place until such a time that I physically cannot manage anymore, as others have said though I think it is a very individual thing and you should go with what feels best for you and suits your needs. 

    I cant see how they can force you to stay in a property if it no longer suits your needs, I know that care can be increased and a lot is done to keep people in their own homes rather than assisted living complexes or hospitals 

    Whatever happens I hope you find the best solution for you 
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    Hi Geoark,
    Thank you for your reply. If I agree to adaptions I would have to say in my property for 5 years and I am worried if I still won’t be able manage to move independently in my property and will feel unsafe. My main concerns are:
     
    If I get ill in the night or fall who would know? 

    I’m also worried about the isolation on living alone. There’s not much to do in my area and getting out and about isn’t always easy as the roads are not really accessible for wheelchair use.

    Basically I don’t want to stay in a property that I will still unsafe in and isolated.
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    pollyanna1052
    Thank you for your reply and thank you for understanding my predicament. I think I was swept away in the moment with moving to West Sussex but managing without my sister being there, is doable but means there were several things which is swaying my decision. 

    I’m know it’s probably best all round for me to stay to here in London but not sure and just would like to explore every scenario.

    Its so difficult to know what to do which is right. 
  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,384 Disability Gamechanger
    Hi @Rifi7 and thank you for replying.

    I can appreciate your concerns about falling or becoming ill. While I do not live alone, I have taken a couple of falls recently, once in the street, the other getting out of the bath. As I am getting more unsteady on my feet, it is a growing concern.

    There are some products out there which can alert others. Most go to a call centre which can have expensive ongoing costs. One of the cheapest I have found is Buddi, https://www.buddi.co.uk/ It is a wrist band and can be used via smartphones. If you don't have a smartphone, there is a Buddi clip you can purchase. Ongoing costs are low, 50p per week for insurance and either £1.99 per week to connect to family and friends or £3.99 to connect to the call centre. Note: you need to be able to claim relief from the Value Added Tax under Group 12 of Schedule 8 of the Value Added Tax Act 1994. Otherwise, you need to add12% VAT. There are severe penalties for claiming this if you are not entitled to, so if you are not sure call HMRC on 0300 200 3701 to check if you are eligible.

    Buddi is the option I am going for in the next few weeks. One thing to consider the persons you nominate if you choose friends and family is they will need a smartphone as well, to use the app to see where you are, so they can call emergency services if required. There is a clip-on device if you don't have a smartphone.

    If your primary concern is falling or becoming ill at night at home, then there is a cheaper alternative at https://www.completecareshop.co.uk/personal-care/personal-alarms/family-and-friends-auto-dialling-panic-alarm-view-large you do need a phone line to use it, and it requires batteries.

    With regards to safety, would the proposed changes make your home safer and more wheelchair friendly? They should have at least discussed what works they plan to do. These type of works focus on your personal needs, now and in the future, any future accommodation is unlikely to be so geared to you personally. As they are applying the five-year residency rule, I am assuming there are significant changes, not a few simple add ons as these usually involve expensive works.

    Social isolation is a big issue, and I don't have any answers. If you can give an indication of which borough you are in, I could do some research and see what is available, or might be close. But please don't be any more specific than the borough level.

    The choice is yours, as I said in my previous post, sheltered or assisted schemes can help to reduce isolation, but there are no guarantees. 

    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!

  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    Thank you Geoark 
    Sorry to hear about your falls. I have someone coming out tomorrow from community alarm to talk about about fitting an personal alarm, but I will definitely look into buddi as well and see what works best for me.

    They are doing extensive works to my flat to make it adaptable. The bathroom is being made into a wet room, the kitchen is completely being adapted, the doorway to rear of the property is being widened and wheelchair ramp installed outside, two doorway widened and garden gate replaced. It would be easier to move me to a more suitable property that wouldn’t need such extensive works but they just don’t have any property in my area.

    I live in area that I have family nearby and most of friends live in the area and I used to pop over to their houses but since I have lost more of my mobility and can longer go up steps it’s become impossible for me to go round their houses. Friends and family can visit but I am sick of being confined to my flat for so long it’s given me a bit of cabin fever. I live in the borough of Enfield but there really is not much in this borough.

    Yes I know there is no guarantees if I moved in assisted living or sheltered housing whether this would make a difference and I’m not sure myself. I wish I knew the answer and to be honest I didn’t think for one minute I would end up feel so isolated when I have so many people around me.


  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,384 Disability Gamechanger
    Hi @Rifi7

    Fortunately, the only thing to get damaged from the falls was losing some of my dignity. Had an appointment with the doctor this morning to check if I had a chest infection, and found myself going to the hospital in an ambulance. The doctor checked my chest and said it was fine, but my blood pressure was very low. Having spent a few hours sitting in the waiting room got to see the doctor at the hospital who said my blood pressure was fine, but I had a chest infection, so he gave me some steroids and antibiotics. So a general waste of everyone's time.

    Most councils and housing associations don't have these type of properties. Once you move on it will be likely most of the work will be taken out and the flat will be returned to the current layout, with the possible exception of the widened door. The exception being a small number of properties that were built to be wheelchair friendly. Chances are they will not even consider offering it to someone who would benefit from the changes. The standard answer I have received when asking why is there is no demand for this type of property! 

    I have had a quick look and as you said found nothing. Will take a bit more time at the weekend and see if I can find anything. Just out of curiosity have you considered doing some local volunteering? It is not everyone's cup of tea; it is an excellent way to get out of the house, have something to do and meet new people. 


    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!

  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    Geoark,
    Yes it’s a bit undignified falling but everyone does it. Oh dear I do wish you better. I’m surrounded by so many people with this nasty cold that’s been going around. Fingers crossed I haven’t got it. 

    I think especially in London there is such a lack of disabled accessible property to rent or live in, that’s why they are pushing for me to go ahead and get the work done as they just don’t have any more property. As I think I mentioned in my previous text, my sister lives in West Sussex where there are plenty disabled accessible properties as it’s catered for the older generation. Also there is much more to do there for wheelchair users.

    I am fortunate that my landlord is agreeing to do the works but I was close to his father who was my original landlord but unfortunately he died 4 years ago, but before he died he had said to his wife and sons to look after me after me. They have stuck by their word.  I was told by my social worker and OT that it’s extremely rare that a landlord would agree to such extensive works, so I’m ever so grateful. I would like to think you were wrong and should the property get adapted, they keep the property as it after I leave. As you said it would benefit someone else who is disabled and they really need more adapted properties.

    Thank you for looking but I have investigated online and spoke to relevant organisations but most have had their funding cut and no longer do activities.  Yes that’s an option for me to do some volunteering. I will definitely look into that.
    Thank you so much. You’ve been so helpful !

  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,384 Disability Gamechanger
    Hi @Rifi7, my apology as I assumed your landlord was either the council or housing association. It is very rare for a private landlord to agree to such changes. Private landlords get a lot of bad publicity, it is good to hear about decent ones.

    Hope you find a voluntary role that suits you and good luck with whatever decision you make about where to live.


    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!

  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi Rifi, isn't Geoark kind...really trying to help you.

    And what a great landlord you have...that is a boon.

    If you like the area you live in then have the works done...BUT..if you know W. Sussex would be a more pleasant place to live, have another think about it. Big decision I know.

    Polls xxx
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    Hi Pollyanna 
    Geoark has been so kind and so very helpful. I’m very fortunate to come across such lovely people that are so willing to help. 

    Yes my landlord is pretty special. 

    They have estimated that the work will take place in 6 weeks time so I’m going to see my sister in West Sussex at the end of February for a break away and hopefully I have more of an idea what I want to do.

    Its a huge decision. There would be little chance I would find a landlord in London whose prepared to do what he is going to do with his property. My decision changes daily but my friends have said just go to Sussex and try it, even if it’s only for a short break.


  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Yes, that`s a good idea...as is seeing it in the gloomy winter months!
    Good luck xxx
  • newborn
    newborn Member Posts: 741 Pioneering
    There isn't  enough disabled friendly housing stock in the country, despite an increasing older population and despite the fact even an athlete today may be unable to walk tomorrow.
     Whatever shall we do?

    Not make new planning  rules to stop a single non accessible plan being approved. 
    Nor enforcing the existing law that landlords cannot refuse disability related alterations.
    Certainly not leaving the adaptation in an adapted dwelling, not even if it is council owned.....Why not? 
    Because "there is no demand for accessible housing".   

    Geoark it is enough to make people scream!
  • Rifi7
    Rifi7 Member Posts: 198 Pioneering
    How can the council say there’s no demand. Ridiculous! I have been living in my flat for over 12 years. When I moved to the flat I was on the waiting list for an accessible property but they couldn’t find me a property in the area I lived in all my life. I found the flat I’m currently in, myself and I was very lucky to meet an amazing landlord who wanted to help. If it wasn’t for him I don’t know where I would be without his kindness. They should give landlords like him an incentive to keep their properties disable accessible that way there might be more properties for disable people.

    I was looking into assisted living but I’m 49 years old so they say I’m to young to qualify as it’s minimum age of 55 - 60 years old. It’s madness as most old people have better mobility than me. It should be what suits the person not age related! The council want to waste money doing the adaptions in my flat, when eventually I will end up in a assisted living property. Makes no logical sense.
  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    It is crazy Rifl, I know someone of 80+, who has just had a through the floor lift put in her own house. She didn't have to contribute to the £25k cost, as she has less than 6k in savings.

    We have no savings at all, yet I`m forced to pay £230 a month for care, because I chose a decent care agency!

    If I`d let the council give me care from a brokerage of 20 different agencies and had any old Tom, **** or Harry come I could have had a discount...not free mind!

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