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Newly single parent with M.E

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Hi,

I was hoping this might be a good place to get some advice. I have M.E and manage it through pacing and graded activity. I have an 18 month old son and my now ex partner left me just over a month ago. I recieve lower rate care DLA. My ex used to do a great deal for me and now I have to do everything alone. I have been struggling for the last month and am at my wits end. I am not managing well at all. I feel like I am getting worse every day and cannot see how I can impove this. So my question is how do other single parents cope with a disability? I am not sure who to ask for help. Tonight I am seriously considering if I need to move back to my parents house with my son. That would not be easy but I need support. Any help would be brilliant.
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Comments

  • Mojisola
    Mojisola Posts: 35,571 Forumite
    Part of the Furniture 10,000 Posts Name Dropper
    I really sympathise. I had two little ones when I was first ill with M.E. There is no way I could have coped without my OH and parents helping.

    Because of the nature of the illness, the more you struggle to keep going, the worse you will get and the more you will delay your recovery. Think seriously about whether you can manage to move back home. It will bring other challenges but having help on hand when you need it is essential.
  • judexx
    judexx Posts: 519 Forumite
    Part of the Furniture 100 Posts Name Dropper
    So sorry that you're having such a hard time.

    It's probably worth calling the ME Association help line tomorrow
    http://www.meassociation.org.uk/content/blogcategory/29/160/
    they could certainly advise you as to any other help you may be entitled to.

    HTH

    Jude
  • Thank you for your reply Mojisola, I have been thinking about it for a while, in fact my mum has mentioned perhaps building an extension for me. The problem is that they would have to charge me some rent as they would have to take a loan to build. I receive housing benefit and am not sure where I would stand on paying rent to my parents. Oh its all too complicated!

    I know what you mean about delaying recovery, I had been feeling positive and am supposed to be starting a part time MA in october, now I feel like i'm going to have a replase and be back at square one. I've had M.E for 5 years now, its such a difficult illness to deal with.
  • Judexx, that hadn't even occured to me and i'm a member of the m.e assosiation, just goes to show how all over the place I am! I will call them in the morning! Thank you .
  • Hi ring social services for an assessment. It sounds as if you will qualify for direct payments to help you care for yourself and your son. They may also fund a nursery place for your child.
    If your me is getting worse you should look at your rate of dla.
    If you move in with your parents the extension may be funded by the local authority. You really need some advice on your situation and the options open to you. An ot assessment may open the doors needed.
    What are disabled facilities grants?

    Disabled facilities grants are grants provided by your council (local authority) to help meet the cost of adapting a property for the needs of a disabled person. The scheme operates in England, Northern Ireland and Wales.
    Who can get them?

    To be eligible for a disabled facilities grant, you must be one of the following:
    • an owner occupier
    • a private tenant
    • a landlord with a disabled tenant
    • a local authority tenant
    • a housing association tenant.
    • Some occupiers of caravans and houseboats are also eligible.
    If you are one of the above and applying for the grant for someone else who is disabled you need to state this on your application.
    Who is a disabled person?

    You are treated as disabled if one of the following applies:
    • your sight, hearing or speech is substantially impaired
    • you have a mental disorder or impairment of any kind
    • you are substantially physically disabled by illness, injury, impairment present since birth, or otherwise
    • you are registered (or could be registered) disabled with the social services department.
    What can you get a grant for?

    You can get a grant to help a disabled person:
    • have easier access to and from the property (such as widening doors or installing ramps).
    • make the property safe for the him or her and others living with them (such as a specially adapted room where a disabled person could be left safely unattended or providing improved lighting for a disabled person with sight problems).
    • have easier access to a room used or that can be used as the principal family room.
    • have easier access to a room used or that can be used as a bedroom.
    • have easier access to a room in which there is a lavatory, bath or shower (such as by providing a stairlift).
    • by providing a room in which there is a lavatory, bath or shower, and wash-hand basin.
    • use a lavatory, bath or shower or wash-hand basin.
    • prepare and cook food.
    • by improving or providing a suitable heating system
    • use a source of power, light or heat (for example adapting heating or lighting controls to make them easier to use).
    • have easier access and movement around the home to enable the disabled person to care for someone dependent on them, who also lives there (such as a child, husband, wife or partner).
    • have easier access to your garden or make access to your garden safe for you - your garden can include a yard, outhouse or other facility within the boundary of land attached to your dwelling. It can also include a balcony or land next to the mooring of a houseboat.
    Applying for a disabled facilities grant

    Disabled facilities grants are normally paid by your local housing authority (your local Housing Executive Grants Office in Northern Ireland) who should provide you with an application form.
    You will usually be asked to sign a certificate stating that the disabled occupant will live in the property for at least 5 years after the works are completed, or a shorter period if there are health or other special reasons.
    A council cannot refuse to allow you to make a formal application or refuse to give you an application form.
    You should not have any work carried out on the property until your council approves the application. If the work is urgent, you should contact the council to discuss this. You will also need to ensure that you separately get any planning or building approval needed.
    How much is it?

    The maximum grant payable under a mandatory disabled facilities grant is £30,000 in England, £25,000 in Northern Ireland and £36,000 in Wales. The grant will only be paid when the council are satisfied that the work has been completed to their satisfaction and in accordance with the grant approval.
    The actual amount of disabled facilities grant that someone can get depends on the income and savings of the disabled person and his or her partner, even if the disabled person has not actually applied for the grant (such as when an application is made by a landlord with a disabled tenant ).
    For more detailed information on how disabled facilities grants are calculated see our Disability Rights Handbook.
    Income and savings

    The income and savings test is similar, but not identical, to the test for income support (IS), or pension credit (PC) if the disabled person is aged 60 or over. In all cases the first £6,000 of any savings are ignored.
    If the disabled person's income and savings are below the test limits there will be no need for him or her to contribute to the cost of the works.
    If the disabled person's income and savings are more than the test limits, then a contribution will be required from them towards the cost of the works.
    Disabled children

    Parents income is not taken into account for adaptations for disabled children.
    What if the grant isn't enough?

    You may be able to get help under other local authority housing grant schemes. See Factsheet F49 - housing grants for more information.
    Can my council refuse to give me a grant?

    A disabled facilities grant is compulsory but in order to approve an application the local housing authority must be satisfied that the works are both "necessary and appropriate" for the needs of the disabled person, and "reasonable and practicable" in relation to the property.
    In order to check whether the works are necessary and appropriate, the local housing authority usually refers you to the social services department first for an assessment by an occupational therapist .
    How long should an assessment take?

    There is a 6-month time limit for the local authority/council to give you a decision. This starts from the date of your formal application. Sometimes your local authority may specify a date of payment for the grant but this should be no later than 12 months from the date on which you made your application.
    Complaining

    If you do not get a decision within 6 months of applying, write and ask why and request that a decision be made. Seek legal advice if you still do not get a decision, or if you have been prevented from applying in the first place. Alternatively, you can make a complaint of maladministration to the Local Government Ombudsman.
    In Northern Ireland you can complain to the Housing Executive.
    Housing grants in Scotland

    For information on housing grants in Scotland see our see Factsheet F49 - housing grants for more information.
    Where can I get more help and information?

    Guidance on the scheme and information about other housing grants available in England and Wales is contained on the Department for Communities and Local Government (DCLG) website (www.communities.gov.uk) and also on the Directgov site at www.direct.gov.uk. Guidance in Northern Ireland is available on the Northern Ireland Housing executive website (www.nihe.gov.uk).
    The housing grants, construction and regeneration act 1996 is the main legislation for disabled facilities grants.
    You can find out more detailed information about disabled facilities grants in Disability Alliance's Disability Rights Handbook, available to buy at www.disabilityalliance.org/drh34.htm.
    You can obtain copies of our factsheets and publications by contacting Disability Alliance on 020 7247 8776 (voice and minicom) or by fax on 020 7247 8765.
  • Oh thank you so much lolababy, I had an OT assesement earlier this year but as my situation has changed it is probably a good idea to have a new one now. I will out that on my to do list for the morning.

    Also thank you for the info about the grants, that is extremly interesting. I will have a proper read tomorrow and speak to my mum about it. To be honest I would rather be back at home than in my flat alone but I can only do it if it is financially viable. This might be the way to make it possible. I am so glad I posted tonight, I was feeling desperate and alone and I have had such an overwhelming amount of great advice so thank you to everyone who has replied.
  • daska
    daska Posts: 6,212 Forumite
    Part of the Furniture Combo Breaker
    I'm in the same boat but my little one is 27 months.

    Contact Social Services - start with Adult Services as they have a duty of care to support your needs including your needs to fulfil your parenting role. Children's Services might also take on some responsibility if they consider your child to be 'in need' (that's not the same as 'at risk'!) The Disabled Parent's Network is a useful source of information and ammunition.
    Eat food. Not too much. Mostly plants - Michael Pollan
    48 down, 22 to go
    Low carb, low oxalate Primal + dairy
    From size 24 to 16 and now stuck...
  • i would also suggest contacting dial uk for help with applying for other benefits, if any, you might now be entitled to. (entitledto website would help you decide and dial would confirm and help you apply/apeal etc).

    if you want to let of steam or just natter with others who understand managing things by pacing feel free to come join us in the crocs cafe any time.
  • Thank you daska, I am about to call adult servives, I have been assesed by them in the past but now I am alone it will probably bee able to offer me more. I will check out the parents network too, honestly I don't know what I would have done without all this support!

    purplecatlover - I think I will speak to dial, especially regarding the possibility of applying for the grant to possibly build on my parents house.
  • jazabelle
    jazabelle Posts: 1,707 Forumite
    purplegirl - if you do go the disabled facilities grant way, it is quite a complicated process, but there is a charity called Anchor Staying Put which take care of everything for you. They help you fill out all the paperwork, liase between the council and you, and get quotes from contractors, then arrange everything with the builder. If anything goes wrong they can help you and their fee is paid out of the grant, so you don't pay anything.

    Their website is: http://www.anchorstayingput.org.uk/ and then click agency locator to see if there is one near you. Hope this helps. You can also phone them for advise in regards to their process.
    "There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow." - Orison Swett Marden
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