If you are living with motor neurone disease (MND) or Kennedy's disease, or provide help as a carer, it can help to think about needs assessment, home care and home adaptations as early as possible. This can help you access care support when needed and your assessment can be reviewed as things change.
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"It's about finding solutions to problems to enable life to continue as positively and optimistically as possible."Carer, supporting a person with MND
Why do I need to think about needs assessment, home care and home adaptations?
Care needs with MND increase over time and can become complex. Additional help may become necessary, for yourself and your carers too.
“Knowing who you can contact and where to begin asking is a great advantage.”Person with MND
At first, equipment and support for daily routines can help. In time, those who support you may need some help too, from care workers. This can help you all find time to do things you really want to do.
Depending on your needs, support overnight can help, as your main carer will find it difficult to sustain 24-hour care over a long period.
Find out about available services and how to access these, so you feel informed, better prepared and more able to plan for the challenges ahead.
See 10B - What is social care? for guidance about social care and how it works.
What types of home care can I get?
You may be able to get care workers to assist with home care, for a wide range of daily routines.
Depending on your needs and the level of support required, this might include:
- personal care to help with bathing, going to the toilet, getting dressed or undressed, and moving from one place to another
- eating and drinking, including food preparation
- household tasks, such as washing, cleaning and shopping.
Following your needs assessment, a personal care plan will be agreed with you. This will include suggested services to meet your needs. If your needs change, you have the right to ask for a review so that your care plan can be adjusted. This may mean accessing more or different services, or increasing the amount of support you receive from a service.
See 10B - What is social care? for guidance about social care and how it works.
Being aware of your rights can help you get an assessment of your needs, to help you access the support and information you may need. You may qualify for support from care workers and local services.
We provide information sheet 10B - What is social care? which includes guidance about your rights.
Getting your needs assessed
Adult social services can provide a needs assessment if you have MND, or a carer’s assessment if you are providing support. The assessment will work out your needs, agree which support services could assist and help you plan for emergencies. Some external support may be necessary, as care needs will increase with MND.
To arrange an assessment, contact your local authority in England and Wales, or your local health and social care trust in Northern Ireland.
“You need to be as well informed as possible about how to access services.”Carer, supporting a person with MND
The assessment will lead to a personal care plan, which will be agreed with you. You may have to pay towards any care services arranged, but a financial assessment is used to work out how much you pay and how much your local authority may pay. For more detail, see the section Personal budgets and direct payments on this page.
You may also be entitled to a range of benefits and financial support. When making a claim or being assessed, always provide lots of detail about how long things take and any help needed to complete tasks. This is more likely to result in more appropriate support.
You may find our page on how to get the right treatment and care helpful: Getting the right treatment and care with MND This explains how the NICE guideline on motor neurone disease can help.
See our animations page which includes an overview What is social care?
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Personal budgets and direct payments
Personal budgets and direct payments relate to the way care services are paid for, as included in your agreed personal care plan. The following definitions provide a brief overview, but you can find out more in information sheet 10B - What is social care? which also explores differences between systems in England, Wales and Northern Ireland.
Personal budget for adult social care services
Following your needs assessment, your personal care plan will be covered by an amount of money. This is designed to meet the cost of agreed services or direct support for your needs. This amount is called your personal budget and you may need to contribute to it.
A financial assessment looks at your income and savings to work out how much you pay (known as means testing). Please note that in Northern Ireland, means testing does not apply for care received at home, but does apply if you need to move into a nursing care home.
Receiving your personal budget as direct payments
You can have services arranged for you or select them yourself using direct payments. If so, you will receive your personal budget in direct payments to your account.
This means you have more control over who provides care and when you receive it, but you have to take responsibility for arranging and paying each service.
“It works very well for me. I have a very good care manager who helps me a lot, who has known me for years now.”Person with MND
You can get help to manage direct payments, but you will have certain legal responsibilities. For example, if you hire a care worker as an ongoing personal assistant, you have employer responsibilities. You may want to think about whether or not this is the right option for you.
Is a personal health budget different to a personal budget?
Yes it is. A personal health budget is an amount of money from the NHS for healthcare services, but only applies in England. This can help you select preferred services for things like physiotherapy or home nursing care, when managing a long term condition.
You can still see your GP and receive primary care or emergency treatment as before, as these are not covered by your personal health budget. You will be assessed by the NHS to work out what you need, but not financially assessed, as the NHS pays for your personal health budget.
Find out more in our Information sheet 10F - Personal health budgets
Home adaptations, installations and the Disabled facilities grant (DFG)
Adapting your home can take time and you may need assistance with funding, which can also be a lengthy process. Investigate this as soon as possible if you think it may be necessary.
“Find out about the things you need and plan ahead, so things are in place when needed.”Carer, supporting a person with MND
Try to think about your future needs when looking at adapting your environment or adding major installations. Seek an assessment with an occupational therapist (OT) who can help assess how well your home supports your needs.
For example, a stairlift can be helpful. However, if you use a wheelchair, you may need two to use with a stairlift – one for the ground floor to transfer from a wheelchair onto the stairlift seat, and another upstairs to transfer back out of the stairlift seat and move onwards. Other choices may help, such as a through floor lift or downstairs room conversion for ease of access. Hoists can also help transfers to different rooms, or locations such as chair to bed.
Other things to consider might be the widening of doors and passageways for wheelchair access, installing grab rails or ramps, or installing a walk-in shower. Your occupational therapist will be able to advise on a wide range of possible solutions.
There may be funding to assist with major installations, including a Disabled Facilities Grant. This can take time to arrange, so is worth exploring as early as you can. For more information, see information sheet 10C – Disabled Facilities Grants and home accessibility which also contains more detail about ways to adapt your home.
Page last updated: 18 January 2023
Next review: January 2025