This information is for people who provide care, or are intending to provide care in an unpaid caring role, in England, for a person with Down’s syndrome who is over 18. It will explain how to ask for a Carer’s Assessment that will determine whether you are entitled to support from the local authority, to enable you to continue in your caring role. It will also explain how the assessment will work and what can be expected of the local authority. You can also call the DSA helpline if you have further questions about assessments.
The care you provide in a caring role might be helping someone with activities they are not able to do on their own, for example:
- Getting out of bed
- Washing, dressing
- Preparing meals
- Making use of their home safely
- Attending appointments
- Getting to work
- Being part of the community and maintaining friendships
The support you provide might be prompting, emotional support, structuring the person’s environment or direct physical care and support.
Asking for help does not mean that you don’t care or can’t cope. It is about recognising and valuing your role as a carer and identifying your needs and how they might be met.
The Care Act (2014) sets out the way local authorities must work when assessing and meeting the care and support needs of their local population. It places new duties upon local authorities to give carers the same rights as the people they care for. This means local authorities must consider the things carers wish to achieve from their day-to-day lives and whether the provision of support could contribute to enabling them to meet these outcomes. Local authorities must also consider whether carers are able and willing to carry on caring.
Local authorities must also consider the Care and Support Statutory Guidance (2017) when assessing people’s needs and providing support and services. You can find a copy of this guidance here.
There is a low trigger for local authorities to offer a Carer’s Assessment.
The Local Authority has a duty to offer a Carer’s Assessment where there ‘appears to be a need’.
As an unpaid carer if you provide the type of support already mentioned, to an adult, you are likely to be entitled to a Carer’s Assessment.
You do not need to be living at the same address as the person you are supporting. There is no minimum level of care you must provide in order to have an assessment. The person you support does not need to be in receipt of social care services and you may work full time, part time or not at all.
The local authority will use the assessment to decide whether you are eligible for help by using national eligibility criteria to consider risks to your independence, your health and safety (and that of others), your wellbeing and your ability to manage daily routines.
A Carer’s Assessment may result in support or services for you or the person you care for, to enable you to continue caring for them. A Carer’s Assessment can be undertaken independently or combined with a Needs Assessment for the person you are caring for, if this is necessary and you both agree to this.
The assessment should focus on the impact caring has on your life. For example, it should look at:
- What impact caring has on your physical health and mental health and wellbeing
- Whether you have a desire to work or study
- What outcomes you have for your own day-to-day life
- Whether you are willing and able to continue in your caring role
The following are examples of the support you might receive following a Carer’s Assessment:
- Practical help in the home, for example, with cleaning or gardening for you or the person you care for.
- Adaptations for the home of the person you care for.
- Domiciliary care (care at home) or additional care for the person you support
- A temporary stay in respite services for the person you support, to enable you to have a break and/or access leisure activities, education or employment.
- Day services for the person you care for.
- Meals delivered to the home of the person you care for.
- Help for you to get around such as taxi fares, driving lessons, repairs and insurance.
- If necessary, technology to support you such as a mobile phone or computer if it is not possible for you to access a local library.
- Support for your physical and mental wellbeing – for example, this may mean you are provided a gym membership or yoga classes
Different teams in different local authorities oversee social care assessments. Therefore you will need to ask your local authority which department to contact.
You will need to request a Carer’s Assessment under the Care Act, 2014. It is advisable to request this in writing and you should:
- State clearly you are asking for a Carer’s Assessment and list the people you wish the local authority to involve in the assessment.
- It is advisable to ask for acknowledgement they have received your request and how long it will be before an assessment will take place.
- Keep written records of:
* Your request for a Carer’s Assessment, including the date this request is sent.
* Any other letters or emails you send, including dates these are sent.
* Any telephone calls, including the date of your call and whom you spoke to.
- Remember to provide the local authority with your contact details and ask the date you can expect to hear back from them.
The local authority should undertake the assessment within a reasonable time frame (the Local Government Ombudsman has set this at between 4-6 weeks).
The local authority must provide information about how assessments work and what support is available locally. They should also provide an indicative timescale over which the assessment will take place and keep the assessed person informed throughout the assessment process.
The local authority however does have the power to provide interim support or services in certain circumstances. If you feel you need support more urgently you can ask the local authority to consider, in your particular circumstances, providing interim support or services until the Carer’s Assessment has taken place.
The local authority must provide you with information about how Carer’s Assessments work and what support is available locally. Local carers organisations might be able to help you make the request for assessment if you need this.
The local authority must ensure you are able to be fully involved in the assessment process. If you wish, you are able to have a friend or relative support you during the assessment. If the following describes your circumstances, the local authority must provide an independent advocate to help you with the assessment process:
- You would have ‘substantial difficulty’ in communicating your wishes, and/or you are not able to understand and retain information long enough to weigh it up during the assessment process.
- You have no other appropriate person who is able and willing to support you with this process.
You may also be able to get extra help from local carers support groups. At the end of this information we have listed some national carers organisations that may also be able to help.
It is important to think through all the things you do as a carer and the impact this has on your life. You should think about the things that would help you in your role as a carer. This will help you to explain during the assessment the challenges you face and what support will help you in your caring role. This information will be used to decide whether you are eligible for support, so remember to mention everything you do and what impact your caring role has on your life and your wellbeing.
You may also like to ask your GP, any other professional, family member and/or friend who know you well to supply written evidence of your need for support.
The local authority must take the view that you are best placed to judge your own wellbeing and they must also take into account your views, wishes and beliefs. They must consider how the provision of information or support might reduce, prevent or delay your needs for support developing further.
You will therefore need to provide the local authority with evidence about how your needs arise due to delivering necessary care to an adult, how these needs affect your physical and/or mental health and how not meeting your needs significantly affects, or is likely to significantly affect, your wellbeing.
The local authority may commission an external organisation to conduct assessments. Though local authorities may do this, they remain responsible for any problems with assessments or care and support planning. Therefore they remain responsible for ensuring eligible needs are identified and met.
Other than in the case of a ‘Supported Self-Assessment’ the assessor must have the ‘skills, knowledge and competence to carry out the assessment’ and be ‘appropriately trained’. Sometimes the worker undertaking the assessment will need to contact other people who have specialist knowledge in order to understand your situation. This may mean, for example, they need to contact a medical professional. By law the assessment should:
- Ensure you are able to participate effectively in the process.
- Take into account your wishes and the outcomes you wish to achieve.
- Take into account the level of your needs.
The assessment should look at what you need, not what is available. It should consider the things you want to achieve in your day-to-day life that will maintain or improve your wellbeing. Therefore the assessment should take into account whether your caring role prevents you from, for example, staying in work or having a social life.
The assessment should ask you about:
- Your caring role – how you manage from day to day.
- Your own physical, mental and emotional health, and the health of the person you care for.
- Whether you wish to continue caring.
- Your relationships and social activities.
- Your wishes to engage in education, training and leisure activities.
- Whether you are working, or would like to work.
- What would happen in an emergency.
You will need to ensure the worker assessing your needs understands what life is like for you. They should not assume you are willing to continue providing the level of care you are currently giving.
Be honest about how you feel – caring is your choice.
The local authority will consider whether your situation meets the national eligibility criteria for a service to be offered.
Your needs have to be considered in the light of whether your caring role makes it difficult for you to meet the eligibility outcomes (this should include the things you wish to achieve from your day-to-day life and any additional caring responsibilities you have for other persons, including any children you have) and the impact of not being able to meet these needs on your wellbeing (for example the impact on your physical, mental and emotional health).
The local authority, if you want them to, should meet any eligible needs they have identified. In this event, they will work with you to make a Support Plan.
The Support Plan sets out how your needs can be addressed. The Support Plan might include services for you, or the person you support or it may include a combination of the two. There should be an initial review 6-8 weeks after the Support Plan is put in place. Following this, there may be an annual review. You can also ask for a review at any time if things aren’t working or your circumstances change. The Support Plan should detail:
- How your needs will be met.
- The services that will be provided, by whom and how often (in cases where services will be directly provided or arranged by the local authority).
The local authority must provide written information about how they reached this decision. They must also provide information about relevant services in your locality that may help to prevent, delay or reduce your needs from developing further.
The Support Plan will include a Personal Budget. This is the amount of money the local authority will pay to meet the needs identified through the Carer’s Assessment. The money in this budget must be enough to cover the cost of meeting the eligible needs detailed in the Support Plan.
In most circumstances you can have a Direct Payment to enable you to purchase the support to meet your eligible needs. Direct Payments must be used to meet only the eligible needs identified in the carer’s Support Plan. The local authority should be able to provide more information on Direct Payments.
Make sure you have a written copy of the assessment. If you disagree with the content of the assessment, discuss this with the worker that has undertaken the assessment or with their manager to see if you can reach an agreement. If you are still unhappy with the outcome following this you can follow these steps:
- Write to the local authority and ask them to explain how they reached their decision. You have a legal right to a written explanation.
- Get a copy of the local authority’s complaints procedure – this should be on their website or you can contact the local authority to request a copy.
- Following the local authority’s complaints procedure write to the local authority (you may like to copy in the Monitoring Officer) stating clearly that you are making a formal complaint. Explain what you feel the local authority has not taken into consideration about your circumstances. Remember to explain your needs and how your wellbeing is affected.
- If you are not happy with the local authority’s response, write to them to request a review of your case copying in the Monitoring Officer.
If having followed the complaints procedure, you are not happy with the local authority’s response you can take your complaint to the Local Government Ombudsman (England).
For information to help with making a complaint please see article on pg. 31 of DSA Journal 131. There is also a link at the end of this factsheet to some examples of template letters from Irwin Mitchell which can be used when making a complaint about social care.
Depending on your financial situation, which will be assessed on an individual basis, there may be a charge for providing support. The Carer’s Assessment itself should be free. The local authority cannot charge you for support or services provided to the person you care for though you may be charged for support or services provided directly to you. Any contribution that you are asked to make should be affordable for you.
If you are not eligible for services free of charge, the local authority can still provide services to you if you are willing for it to do so. If there is a charge for these your local authority must provide clear information about what this is.
Carers may be able to claim Carer’s Allowance or Carer’s Premium/Addition. For more information see our Benefits: an Overview leaflet.
Our Benefits Advisors can offer more information about how to apply for benefits. For help with this please call the Down’s Syndrome Association Helpline on 0333 1212 30 and ask to speak to a benefits advisor or email firstname.lastname@example.org.