Adult social care for someone with SMA could offer support with tasks such as:

• transfers (e.g. to bed, onto the toilet)
• personal care (e.g. washing, dressing)
• eating.

LAs should also be funding community access to aid independence.  This includes making use of necessary facilities or services in the local community. Examples are being able to access and use public transport and leisure facilities or services. However, access to and delivery of social care may vary depending on where you live in the UK.

To find out you will need a Social Care Needs Assessment. This is done by an assessor, usually a Local Authority Worker. They will work out if you are eligible for this support.

All LAs must apply an eligibility threshold to your assessment. This is set out in The Care Act 2014:

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

2. Because of your needs you are unable to achieve two or more “specified outcomes”.

Unable means:

• you cannot complete task(s) without assistance, significant pain, distress or anxiety or
• you would endanger or be likely to endanger your health or safety or that of others around you or
• the task(s) take you 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 cannot meet at least two of these specified outcomes there is, or is likely to be, a significant impact on your personal wellbeing.

Wellbeing describes your:

• dignity (including being treated with respect)
• physical and mental health
• emotional wellbeing
• protection from abuse and neglect
• control over day-to-day life.

Your assessor should consider how long a task or activity takes and the impact this has on you. This will help them to establish the significance of the impact of your disability on your wellbeing.

Find the details for the Local Authority in your area >.

Your Local Authority’s website will have contact details for you to email or phone to make a referral to Adult Social Care.

Once you have made a referral, the local Adult Social Care department will get in touch with you. They will arrange to visit you at home to complete your Social Care Needs Assessment.

Every LA is different. The length of time you may have to wait before you are 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 providing evidence of your needs and looking at how best to meet them.

Assessments must take into account:

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

The 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. Tell them if you think these should 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. They will want to know about your coping strategies and 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 what help they need for each daily activity:

• what the help is
• when it is given
• who gives it
• how often
• for how long.

You can download a diary template >.

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

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

If you have a lot of difficulty being involved in your assessment and planning, the assessor can arrange for support. This will be from an appropriate individual who can ensure your views are heard. This might be a healthcare professional who knows you well. If there is no one appropriate, they must engage a Care Act Advocate to support you.

If someone has particular communication needs because of their condition,  the LA must make sure they receive:

• information in a way they can understand and access
• any support they need to communicate.

Even if you don’t have a lot of difficulties being involved in the assessment, you have the right to have another person with you at any of the visits.

You can have your Personal Assistant or carer at the assessment with you. Your PA or carer is likely to know and understand your needs and how these impact on your wellbeing.

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

Some Local Authorities have signed up to The Social Care Finance Gateway >. This is an easy-to-use website where you can calculate how much you might be asked to contribute towards care or support. Look for the local authority responsible for providing your care or support on the drop-down menu.

Disability Related Expenses 

 Each local authority must leave you with enough money for the extra costs you pay to manage any necessary disability-related expenditure (DRE) that are not covered by the NHS or Adult Social Care. The amount varies but usually there is a flat rate that will be allocated by the local authority to help cover extra DRE. Each local authority will have their own policy and written guidance on DRE, please refer to this before your financial assessment.   

Examples of disability-related expenditure: 

• Certain medication and health-related purchases – (that are not provided through the NHS)  
• Incontinence pads 

• Aids and adaptations – (which are not covered under a disabled facilities grant, e.g. mobile ramp)  

• Equipment for monitoring and communication – (assistive tech)  

• Costs associated with an accessible vehicle.  

• Gardening, cleaning, online shopping delivery fees – (if input is required to support these tasks) 

• Taxis if public transport is inaccessible 

• Internet connectivity – (if needed to reduce risk, support monitoring or for disability aids) 

• Personal alarm subscriptions   

• Specially adapted clothing/shoes.  

• Laundry – (extra washes due to incontinence or specialist washing powder) 

• Water if metered – (e.g. toilet use/personal care) 

• Heating – (e.g. an above average temperature maintained in the home) 

• Higher electricity bills, – (e.g. charging essential equipment) 

 Your council will request documents or receipts as evidence for the extra costs being incurred.  

 These could be: 

-contracts   
-invoices 
-receipts 
-medical letters 
-bank transfers 
-care assessments and support plans 

After the assessment process, you should be given a written copy of your assessment. If you have been assessed as being eligible for care and support, you will be offered a Personal Budget. Your LA should work with you to put together a Care and Support Plan. This details 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 will source the Personal Assistants (PAs) or carers and pay them directly on your behalf. This is sometimes called a managed personal budget) or
• you can choose to have direct payments. This is when you recruit and employ your own PAs. You run your own pay roll account. You 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 pluses and minuses of each.

Some LAs offer additional options. Your LA should be able to offer advice and information on all their available options. This should include:

• where you can receive help and support with setting up a direct payment
• running your own pay roll account
• recruiting PAs.

They should help you to decide what is 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 >

Using An Agency

Your Local Authority (LA) should be able to advise you which agencies operate in your area.

The advantages of using an agency are that you don’t have any of the responsibilities that come with recruitment and employment. Agencies may well be the best option if you don’t need much help – perhaps just a little each day.

If you’re looking for a PA to work regular hours each week, you may find an agency that will work with you to find one or more PAs and involve you in their selection. Generally though, this is not guaranteed. You may find you have little say as to who you get and sometimes not much control over when.

What they can do to help you may also be limited by what ‘tasks’ they’re permitted to help you with. These will be set out in their agency guidelines. For example, some agencies require 2 carers for hoisting. That said, some agencies have excellent staff, high standards and are more flexible. Using an agency also has the advantage that there are likely to be more regular LA reviews  of how the support is working.

Recruiting & Managing PAs Yourself

The great benefit is that you’re in control. You can say what help you want, when and how. The challenge is that you’re in charge of recruitment and as an employer have legal responsibilities. For example, you will need to:

• provide a contract of employment
• pay tax and national insurance
• pay into a pension scheme
• cover sick pay, holidays and insurance
• cover training needs.

 If your care is funded by Continuing Healthcare (CHC), this option may not be available in your area.

Every LA must have a resource list of ‘support brokerage services‘. These services help people set up and manage the employment side of Personal Assistants (PAs). This includes assisting with payroll and recruiting PAs.

Disability Rights UK: Being in Control: Getting Personal Assistants (PAs) > looks at the benefits of having a PA. It includes how to find and fund one and all aspects of your employer responsibilities. It also provides links to other useful resources.

The ILG (Independent Living Group) Community > is a UK-wide network of individual employers of Personal Assistants. It’s for people to share experiences, get support and unite their voices in order to help shape health and care services across the UK. You can sign up for free. Benefits include access to a private Facebook group and podcast, news and updates, templates and guide notes.

Employing People You Know As PAs

Some people want to employ someone they know and trust as their PA. Generally this can be arranged if the person is related to you, or a friend, but they do not live in the same house as you.

If the person does live in the same house as you, this is usually not possible. It can depend on your specific circumstances. If it’s something you want to consider, talk with your LA worker about the options for you.

Community members talk about their relationships and experiences with their PAs:

Anybody who provides unpaid care and support to you is entitled to a Carer’s Assessment by the Local Authority. See Carer’s Assessment >

Also see:

• Tab 6 Carers Allowance >

A Social Care Assessment should include discussing support to enable you to access and engage in work, training, education or volunteering.

Access to work offers support to disabled people in paid employment. It makes sure you’re not disadvantaged when doing your job. It ensures your employer makes reasonable adjustments for you in the work place. Examples are:

• providing equipment
• flexible working hours.

If you’re eligible, the scheme may offer a grant to support your needs in the work place.

See:  Tab 3. Access To Work & Reasonable Adjustments >.

If you’re living away from home:

• your care should be funded by the Local Authority where you’re ‘ordinarily resident’. You will still need a Social Care Needs Assessment or,
• if you’re already receiving a care package, it may need to be reviewed to make sure it will meet your needs while you are studying.

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

See:  Care Packages for University >