Needs assessment, home care and home adaptations
If you are living with motor neurone disease (MND) or Kennedy's disease, or you provide help as a carer, you may be able to access care support. To find out if you qualify, seek an assessment of your needs by your local authority in England and Wales, or your local health and social care trust in Northern Ireland. Select from the following to find out more.
"It's about finding solutions to problems to enable life to continue as positively and optimistically as possible." Carer, supporting a person with MND
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, getting support for some daily routines can help you, and those who support you, find more time to do the things you really want to do.
Over time, you may need some help overnight, as your main carer will find it difficult to sustain 24-hour care for a long period.
Finding out about available services and how to access these can help you feel informed, more prepared and better able to plan for the challenges ahead with MND.
You may be able to get help with a wide range of daily routines from care workers.
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.
As a carer, you may qualify for support from care workers and local services. Being aware of your rights can help you get an assessment, to access the support and information you may need.
We provide information sheet 10F – Your rights to social care to help explain.
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
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.
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. See the section Personal budgets and direct payments on this page for more detail.
You may find our page on how to get the right treatment and care helpful: How can I check if my treatment and care are appropriate? This explains how the NICE guideline on motor neurone disease can help.
For more information, see:
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 – Direct payments and personalisation.
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).
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. This is an amount of money from the NHS for extra healthcare services, such as additional physiotherapy or home nursing care, to help you manage a long term condition. You can still see your GP and receive primary care or emergency treatment as before, as these are not part of 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.
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 which also contains more detail about ways to adapt your home.