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Last reviewed: June 2022

This section covers how Local Authorities (LAs) can meet your care and support needs, and gives some useful links.

Adult social care for someone with SMA could offer support with tasks such as personal care, washing, dressing and eating. LAs should also be funding community access to aid independence, which includes making use of necessary facilities or services in the local community, such as public transport and recreational facilities or services. However, please be aware that access to and delivery of social care may vary depending on where you live in the UK.

In this video, Emma talks to Jack and Becca about getting the most from your personal budget:

Currently, you’ll have what’s called a Social Care Needs Assessment undertaken by an assessor, usually a Local Authority Worker, to see if you’re eligible.

The eligibility threshold that all LAs must apply to your assessment are set out in The Care Act 2014:

1. Your needs must be caused by physical or mental impairment or illness. You shouldn’t need to give a formal diagnosis of your SMA

2. Because of your needs you’re unable to achieve two or more "specified outcomes".

Unable means:

  • you can’t complete task(s) without assistance, significant pain, distress or anxiety or
  • you would endanger / be likely to endanger your health / safety or that of others around you or
  • that the task(s) take significantly longer than would be expected.

Specified outcomes mean that you need to meet two or more of the following outcomes:

  • Managing and maintaining your nutrition
  • Maintaining your personal hygiene
  • Managing your toilet needs
  • Being appropriately clothed
  • Being able to make use of your home safely
  • Maintaining a habitable home environment
  • Developing and maintaining your family or other personal relationships
  • Accessing and engaging in work, training, education or volunteering
  • Making use of necessary facilities or services in the local community including public transport and recreational facilities or services
  • Carrying out any caring responsibilities you have for a child

3. Therefore, because you can’t meet at least two of these specified outcomes there is, or is likely to be, a significant impact on your personal wellbeing.

Wellbeing: this describes your dignity (including being treated with respect), your physical and mental health, your emotional wellbeing, protection from abuse and neglect and your control over day to day life. To establish the significance of the impact of your disability on your wellbeing, your assessor should consider how long a task or activity takes and the impact this has on you.

Find the details for the Local Authority in your area.

Once you find the website for your Local Authority, there’ll be contact details for you to email or phone to make a referral to Adult Social Care.

Once you’ve made a referral, the local Adult Social Care department for your area will get in touch with you and arrange to come and visit you at home to complete your Social Care Needs Assessment. Every LA is different, so the length of time you may have to wait before you’re seen may vary; it’s always worth asking about waiting times when you make a referral.

The Adult Social Care Needs Assessment is about identifying and meeting needs, it’s not age, condition or disability-focused, it’s about proving evidence of your needs and looking at how best to meet them.

Assessments must take into account:

  • Your wishes and preferences and the wishes and preferences of any other person you wish to be involved (for example your partner or your informal carer).
  • The complexity and severity of your condition.
  • Any fluctuations in your level of needs

The Local Authority (LA) should consider how best to complete the assessment to support your ability to contribute.  For example, let your LA know if you think it would help to have several visits and whether these might be at different places and at different times of the day.

Your views and the views of those around you are important for building a picture of your daily life for the assessor – the support you receive and your coping strategies, as well as any support you receive from professionals, organisations or your local community.

You may want to gather information from the professionals and any others involved in your care and support. Each one can provide evidence of your needs based on their own area of expertise and knowledge.

Some people find it helpful to keep a diary detailing, for each daily activity, what help is needed, when, from whom, how often and for how long. You can download a diary template.

At your assessments or support planning meeting, your LA must involve:

  • You
  • Anyone else you ask to be involved
  • Your unpaid informal carer if you have one

If you have substantial difficulty being involved in your assessment and planning, the assessor can arrange for an appropriate individual (such as a healthcare professional who knows you well) who can facilitate your involvement to ensure your views are heard. If there isn’t anyone appropriate, they must engage a Care Act Advocate to support you.

The LA needs to ensure that anyone who has particular communication needs because of their disability receives information in a way they can understand and access, as well as any support they need to communicate.

Whether you have substantial difficulties being involved in the process or not, you have the right to have another person with you at any assessment or support planning visit.

You can have your Personal Assistant / carer at the assessment with you. Your PA / carer is likely to have insight into your needs and how these impact on your wellbeing, so this may be a good idea.

You’ll have a Financial Assessment as part of the process and according to your finances, you may be asked to contribute towards your support. You’ll be able to find out more about Finance and Benefit Assessments on your local authority website.

After the assessment process, you should be given a written copy of your assessment. If you’ve been assessed as being eligible for care and support, you’ll be offered a Personal Budget. Your LA should work with you to put together a Care and Support Plan, detailing the help you need and who will support you.

You can choose to receive your personal budget to either:

  • enable the LA to provide a package of care for you – they’ll source the Personal Assistants / carers and pay them directly on your behalf (sometimes called a managed personal budgetor
  • you can choose to have direct payments, where you recruit and employ your own personal assistants (PAs), run your own pay roll account and control how your PAs support you

Different options suit different people in different situations. It’s worth asking what options are open to you and researching the pros and cons of each. Some LAs offer additional options to the two above. Your LA should be able to offer advice and information on all their available options (including where you can receive help and support with setting up a direct payment, running your own pay roll account and recruiting PAs) to help you decide what’s right for you.

You can find more information at:

NHS.UK: Personal Budgets and Direct Payments

Citizens Advice: Direct Payments

Disability Rights UK: Personal Budgets

There is related information in this section: Personal Assistants (PAs)

When you have your Social Care Needs Assessment, anybody who provides unpaid care and support to you is entitled to a Carer’s Assessment by the Local Authority.

For more information:

NHS Website: Carer Assessments 
Carers UK: Carers Allowance

Support to enable you to work should be considered during a Social Care Assessment, as detailed in the Care Act section about accessing and engaging in work, training, education or volunteering.

Access to work is a scheme that offers support to disabled people in paid employment. It makes sure you’re not disadvantaged when doing your job, and ensures your employer makes reasonable adjustments for you in the work place, such as equipment or flexible working hours. If you’re eligible, the scheme may offer a grant to support your needs in the work place.

You can find related information in: Access To Work & Reasonable Adjustments in this section.

When you study at university and live away from home, your care should be funded by the Local Authority where you’re ‘ordinarily resident’. You’ll still need a Social Care Needs Assessment or, if you’re already receiving a care package, you may need a review of this to ensure it’ll meet your needs while you’re studying.

If you meet Continuing Health Care (CHC) criteria and already receive CHC funding at home, this should continue at university.

You can find related information in: University, Higher & Further Education in this. section