Many adults on the autism spectrum need help and support to live as independently as possible. Some people are able to pay for their support privately. However, most people will need support from social services to organise and help pay for their care.

This guide is to inform autistic people aged 18 or over how to access a needs assessment by social services and how social services work out who is eligible for support. It may also be useful for their carers.

A needs assessment is the way social services find out what all your needs are and in which areas of your life you need support. This is sometimes called a community care assessment. Not everyone who has a needs assessment will then be entitled to receive support, but the only way to find out if you are is to have a needs assessment.

Support from social services can be provided in many different ways depending on your needs. Some people require a big package of support, while others may only need a few hours of support per week. Some people are eligible for 24 hour care in a residential care home, while others are eligible for supported living (accommodation and a support package).

In the past there have been lots of different pieces of legislation that say how social services should assess adult with a disability, who they should assess and who will be eligible for support.  All these pieces of legislation have been replaced by the Care Act 2014. This Act just applies to adults and to the carers of adults in England. 

In this guide, when we say that social services have a duty to do something or that they are required to do something, this means that the Care Act 2014 (or the guidance/regulations that accompany it) say that they have to do this by law. 

Terms and abbreviations:

  • ASD: we've used this abbreviation for autism spectrum disorder. The information contained in this document is relevant to adults with autism, Asperger syndrome, pervasive developmental disorders and a range of diagnoses referring to conditions across the autism spectrum.
  • SSD(s): we've used this abbreviation at times for social services department(s). These are the departments within your local authority, which are most likely to be responsible for assessing, funding and organising care and support. In some cases it may be the mental health team who are not a SSD(s) - they may be an NHS or a multi-disciplinary team with some NHS staff and some SSD staff.

What is adult social/community care?

Adult social care refers to services provided to vulnerable adult members of society to enable them to live as independently as possible for as long as possible. These services are also known as care and support, social services support or community care services. Previously, the social services assessment of a person’s needs was called a community care assessment. It may still be called this in some places or it may be called a needs assessment. 

Vulnerable members of society could be people who have disabilities, older people, people with chronic health problems or mental health needs, drug and alcohol abusers and many others. However, not everyone belonging to these groups will need support from social services and not everyone who has care and support needs fits neatly into one of these categories.

The term ‘Community care’ is also a legal term. In the context of the law, community care refers to those non-medical services provided by SSD(s) to help anyone aged 18 or over who is assessed as needing such services. 

The law entitles people who have care needs to an assessment  to determine if they are eligible for services from social services. Most adult care and support services are provided or arranged by local authorities through their SSDs.  Some community care services are provided by health authorities. This is particularly the case when an adult has had mental health needs and needs help to live in the community. Where someone is assessed as having health care needs as well as social care needs, a joint funded package from social services and the NHS can sometimes be provided.

In some cases, if a person has very complex ongoing healthcare needs, they may be assessed as eligible for NHS continuing healthcare funding. In this case a person’s social care needs would be assessed and fully funded by the NHS alongside their health needs. This is called a care and support package.

Assessments and what happens next

The process that SSD(s) are required to undertake falls into five categories. 

  • Assessment - in order to be eligible for services you will first need to be assessed to see what your support needs are
  • Determining Eligibility - after assessment, the local authority will determine whether you have needs which meet their eligibility criteria
  • Support Planning - once a local authority has identified a person as having eligible needs they must ensure that services are offered to meet those needs
  • Charging - determining any financial payment that you will have to make towards the cost of the service
  • Reviewing - social services must review your support regularly to make sure that it still meets your needs and is right for you.

How to request a needs assessment

If you think you may need support from your local SSD, you can contact them to request an assessment. This may be called a needs assessment or a community care assessment.

Social services are under a duty to carry out an assessment where there is an apparent need under the Care Act 2014. This duty was previously under section 47 of the National Health Services and Community Care Act 1990 until the end of March 2015. Social services have this duty whether or not services are likely to be provided. You cannot be denied an assessment because you have an IQ over 70.

Anyone can contact their local SSD to request a needs assessment.  You can contact your SSD yourself or ask a friend, relative or a professional such as your GP to contact them on your behalf.

The NAS has a model letter available at which you can use as a template. Make sure you keep a copy of any letters or emails exchanged between you and your local authority in a safe place. If you have any problems, the correspondence will make it easier to investigate them. 

Some local authorities may have an online form that you can complete to request a needs assessment.

There is no statutory time limit for needs assessments to be completed within. If you or someone on your behalf has made a request for a community care assessment and you haven’t had a reply from social services within four to six weeks then you should contact them to find out what is happening.

What the assessment will cover and how it will be carried out

All SSD(s) carry out needs assessments differently. This means that we cannot say for sure what questions you will be asked or how long it will take. If someone has urgent needs, social services have the power to put services in place without a needs assessment having been carried out.

A social worker or a community care officer/assessor will usually visit you at home to carry out an assessment. In some cases, social services may prefer to do a needs assessment over the phone or online. They are allowed to do this, but they have to consider whether the means of carrying out the assessment poses any challenges or risks for the person. If there is concern that the person does not have mental capacity then a face to face assessment should be arranged.

Statutory guidance states that local authorities should give consideration to the preferences of the individual with regards to the timing, location and medium of the assessment.

Social Services are allowed to use supported self-assessment forms as oppose to a traditional ‘community care/needs assessment’ but they need your agreement. This is an assessment process carried out jointly by the person with care and support needs and the local authority. Social services must still assess your needs as part of this process, even if you have completed the self-assessment form yourself. You aren’t obliged to complete any forms yourself and you can ask a family member, friend or advocate to help you with them if you prefer.

If a home visit is not offered and you feel that you need one then you should contact the local authority and explain why you require this. For example, you may wish to explain that the difficulties that you have are clearer face to face or that you would like a family member or advocate to be there to help explain your difficulties to the assessor. When the assessor visits, he or she will usually complete forms or make notes about what activities you need support with and how often you need this support. 

Social services are now required to give people a list of the questions that will be asked in a needs assessment prior to the assessment. If this doesn’t happen you can ask your social worker to send these to you.

It would be useful for you to think about the questions below before your needs assessment. 

  • Are you able to eat and prepare meals yourself? Do you need help or prompting? How much help do you need? (for example you may need someone else to prepare all your food for you or you may be able to prepare all your food yourself but you need someone to remind you several times a day to eat at mealtimes)
  • Are you able to have a bath or a shower without help? Do you need help or prompting?
  • Are you able to use the toilet without assistance?
  • Are you able to dress yourself in appropriate clothes for the weather outside and the activity that you are doing? (for example do you remember to wear warm clothes when the weather is cold?) Are you able to do this without anyone prompting you?
  • Are you able to make use of your home safely?
  • Are you able to keep your home reasonably tidy and clean? Do you need someone to remind you to do this? 
  • Are you able to develop and maintain relationships with family and friends? Do you have difficulty in building new friendships or keeping up the relationship that you have with family and friends? If you do have difficulty with this, how does this make you feel?
  • Are you able to access and engage in work, training, education or volunteering? Do you need support to do this?
  • Do you make use of necessary facilities or services in the local community including public transport, and recreational facilities or services? Are you able to access activities in the community that you would like to? If you don’t, what would you like to access? Do you need someone to go with you when you go into the community or remind you to go out?
  • Do you have any caring responsibilities for a child? Do you feel that you need any additional support with caring due to your disability?

The social worker should find out what your likes and dislikes are and what type of support you feel you would benefit from. He or she should take the time to listen to what outcomes you would like to achieve. This is called being ‘person-centred’ and social services have a duty to work in this way.

If you have any sensory needs or areas of your life you find particularly difficult you should be clear with the social worker what these are.

Some people prefer to write down all the areas that they feel they need support with before the meeting. Some people like to write these down in the NAS self advocacy booklet

If you find it hard to express your likes and dislikes, then you may want a friend or advocate to be with you during the assessment. If you have substantial difficulty in being involved in the planning process, social services have a duty to provide an advocate.

You can use the Autism Services Directory to find local advocacy services.

If you have health problems that are not being addressed and you can’t follow up with health professionals your social worker should let the relevant professionals know and they should also assess your needs. In some circumstances social services may want to work with your GP or seek an assessment of your psychiatric or psychological needs to make sure that the right support is put in place.

Assessing future needs

The social worker has a duty to consider what needs you may have in the future and if you are likely to deteriorate in the near future if support is not put in place.  Social services have a duty under the Care Act to consider if there is a need to put services in place to prevent or delay the development of needs for support and care. If you have a needs assessment and you are not eligible for services and support now but your needs change in future you can contact social services again later to ask them to assess your needs.

Which social services team will carry out my needs assessment?

Neither the Autism Act 2009 or the Care Act 2014 states which social services team should complete the needs assessment for a person with ASD. In many local authorities, the learning disabilities team have an IQ cut-off of 70. This means that if your IQ is 70 or over the learning disabilities team may refuse to assess your needs. They are allowed to do this but another social services team must accept the responsibility to carry out your needs assessment. There may be a local ASD/AS team who can carry out your needs assessment. Sometimes the needs assessment is carried out by mental health team or another adults social care team.

People who don’t have a formal diagnosis of an ASD are still entitled to a needs assessment under the Care Act 2014 if they have apparent needs. For example, if you don’t have a diagnosis of ASD but you are unable to meet some of the outcomes in the Determining eligibility list below  then you are still entitled to have your needs assessed.

Whichever team the assessor comes from, The Care Act 2014 states that the assessor must have a good understanding of the person’s condition or they must consult someone who has relevant experience in the condition. You can read more about the statutory requirements under the Autism Act 2009 in the next paragraph. 

What does the Autism Act 2009 say about assessments?

The Autism Act 2009 was the first ever disability-specific law in England committed to improving the lives of adults with autism in England.  

On 26 March 2015, under the provisions of the Autism Act 2009, the Government published new statutory guidance for local councils and local NHS bodies setting out what they have to do to meet the needs of adults with an ASD. As the guidance is statutory, if it says that a local area should do something, they have to do it by law, unless they have a good reason not to. Lack of money will not necessarily be a good enough reason.

The guidance is absolutely clear that on receiving a diagnosis of autism, adults with autism should expect to be offered a community care (needs) assessment, regardless of their IQ and where they are on the spectrum. The guidance says: 'Assessment of eligibility for care services cannot be denied on the grounds of the person's IQ.'  

The statutory guidance also requires that health and care professionals should have training about autism. This is particularly important for someone carrying out a needs assessment. Both the Care Act and the Autism Act statutory guidance say that someone carrying out an assessment must have the knowledge, skills and competence (including knowledge of autism) to carry out the assessment in question or consult someone who does. 

This is reinforced by the Autism Act statutory guidance 2015 which provides detailed information on the level of skills and knowledge an assessor should have in autism.

Read more about the Autism Act 2009 and the Government's statutory guidance at www.autism.org.uk/autismstrategy.

Determining eligibility and how social services work this out

The 'needs assessment' will determine what support you need. Social Services then compare your assessed needs to the eligibility criteria. Having an assessment of needs does not mean you will automatically receive support.

Social services use eligibility criteria from the Care Act 2014 to work out who they will give care and support to. The Care Act 2014 for the first time introduces an eligibility level that is the same across England. This means that if you have a certain level of needs you will be eligible for support no matter which local authority in England you live in.

Summary of eligibility criteria

To be eligible for support from social services the following must be the case:

*the adult’s needs arise from or are related to a physical or mental impairment or illness 

*The person must be unable to achieve 2 outcomes from the list below:

  • managing and maintaining nutrition
  • maintaining personal hygiene
  • managing toilet needs
  • being appropriately clothed
  • being able to make use of the adult’s home safely
  • maintaining a habitable home environment
  • developing and maintaining 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 the adult has for a child.

* As a consequence of not being able to achieve at least 2 of the outcomes above there is or is likely to be a significant impact on the person’s well being.

What does 'significant impact' mean?

The Care Act statutory guidance states that significant impact means that the adult’s needs impact on an area of well being in a significant way;  the cumulative effect of the impact on a number of the areas of wellbeing mean that they have a significant impact on the adult's overall well being.

This means that if a person has several needs but at a fairly low level they may still be eligible for support. This would be if there was an overall 'significant impact' on their wellbeing as a result of having these several lower level needs. This is called a cumulative effect. 

How does social services assess if someone is 'not able to achieve' an outcome?

An adult is to be regarded as being unable to achieve an outcome if the adult:

  • is unable to achieve it without assistance (this includes prompting)
  • is able to achieve it without assistance but doing so causes the adult significant pain, distress or anxiety
  • is able to achieve it without assistance but doing so endangers or is likely to endanger the health or safety of the adult, or of others
  • is able to achieve it without assistance but takes significantly longer than would normally be expected.

If your needs fluctuate, social services must take into account your circumstances over a period that it considers necessary to determine whether your needs meet the eligibility criteria and establish accurately your level of need. Daily fluctuation should be considered as well as fluctuation over a longer time.

When social services are working out if you are eligible for support they must not take into account any support that is being provided by family carers or friends. The Care Act guidance is clear that information about the care provided by your family and friends can be written down in the assessment but this information should not be used to work out if someone is eligible for social services support. 

As an adult in need, Social services must involve your carer/s in the assessment process. Social services must focus on your well being when carrying out their assessment of your needs and making decisions.

They particularly need to consider the following:

  • personal dignity (including treatment of the individual with respect) 
  • physical and mental health and emotional well being 
  • protection from abuse and neglect 
  • control by the individual over day-to-day life (including over care and support provided and the way it is provided)
  • participation in work, education, training or recreation
  • social and economic well being
  • domestic, family and personal
  • suitability of living accommodation 
  • the individual’s contribution to society

The Care Act statutory guidance states that "Wellbeing cannot be achieved simply through crisis management; it must include a focus on delaying and preventing care and support needs, and supporting people to live as independently as possible for as long as possible." This means that social services should not just put services in place when you have reached crisis point.

What happens if I am not eligible?

If your needs do not meet the eligibility criteria, you will not receive care and support services.

Social services have a duty to write to you and let you know if the outcome of your needs assessment is that you aren’t eligible for services and explain why. Social services must be satisfied that your needs will not change in the near future and mean that you will become eligible for support. This is also true if they wish to withdraw or change the services they are offering. 

Your local authority should not take away your support or change it significantly without doing a full review of your care and support needs first.

If the outcome of your needs assessment is that you aren’t eligible for ongoing support from social services they must advise you how the care system works and how to pay for your own care. You might be able to access preventative support services, such as befriending or social groups. The Autism Act statutory guidance says that local authorities should be providing or arranging these services. If you are not eligible for ongoing care and support from social services, you should ask about this.

If you are paying for your own care you can still ask the local authority to arrange the services for you. They may charge you for this but they aren’t allowed to charge more than they would for someone whose care they are funding.

If social services assess that you are not eligible for care and support services you have the right to put in a formal complaint. In this complaint you can state why you feel that your needs meet the eligibility criteria. You may wish to use the eligibility criteria listed above in the section ‘summary of eligibility criteria’ to state why you feel you won’t meet two of the listed outcomes and the significant impact this will have on your wellbeing. For further information see: complaints.  A social services appeals process will be introduced but is not yet in practice.

Support planning

If you are found to be eligible for services, social services should develop a care and support plan (sometimes just called a care plan) with you. The support plan must include the following information:

  • the needs identified by the assessment and any related risks
  • whether, and to what extent, the needs meet the eligibility criteria
  • the needs that the authority is going to meet, and how it intends to do so
  • for a person needing care, for which of the desired outcomes care and support could be relevant
  • the personal budget
  • information and advice on what can be done to reduce the needs in question, and to prevent or delay the development of needs in the future
  • where needs are being met via a direct payment, the needs which are to be met via the direct payment and the amount and frequency of the payments
  • what services you would prefer
  • If your condition fluctuates, how the care and support plan will make provisions for this
  •  a plan in case of a sudden change or emergency
  • details of services you will be receiving
  • details of any charges 
  • any care your carers are willing and able to provide
  • a date to review the plan.

What services are available?

Each person’s needs are different so the support that is available to each person will differ. Services could include the following if you have eligible needs:

  • practical assistance in the home – eg someone to come round to help with cleaning or cooking, or helping you with paperwork such as bills and letters 
  • someone to help you or encourage you to wash, dress or get out and about
  • equipment such as a radio, TV or computer to meet a recreational, educational or socialising need
  • recreational facilities such as day centres and drop in clubs
  • assistance in travelling to a community based care service, learning or work opportunity
  • home adaptations
  • holidays
  • meals (at home or elsewhere)
  • A personal budget received by a direct payment to organise and pay for the above services yourself
  • Employing a personal assistant to assist with any of your eligible needs
  • Residential care
  • Supported living 

For any of the above to be put in place a person must have been assessed as there being a substantial impact on their well being if the service is not put in place.

Personal Budgets

All local authorities are now required to allow people to receive the funding for their services in the form of a Personal Budget. A Personal budget is an amount of money agreed to meet your care and support needs.

Some people prefer social services to manage their personal budget and to organise their support. This is sometimes called a virtual budget or a Council managed budget. Other people prefer to receive their personal budget as a Direct Payment.

Read more about Personal budgets and Direct Payments. 

How soon can I expect services to be provided?

When your needs assessment has been completed you should ask your social worker or community care officer how soon the services you need will be provided. If you have been assessed as needing a service then the local authority is legally bound to provide this. Sometimes you may have to wait a short time for services to become available.

In all cases local authorities are expected to provide a service within a reasonable time. This is often regarded to be four-six weeks maximum. You have a right to complain if you have to wait a long time without getting any services. In urgent cases, social services can put support in place without an assessment being completed or while the assessment is taking place.

Charging

Local authorities have the discretion to charge users for the services they receive including a personal budget (and are required to make a charge for residential care). They should not assess your means to pay for services before deciding what services you need. This means that your ability to pay should not influence their decisions over what to provide. If you are charged social services are required to leave you a certain amount of money to live on.

Reviewing your support

Social services should consider an initial review of your care and support plan within six - eight weeks of it starting. They should also review if significant changes take place. If you or your carer ask for your care and support plan to be reviewed, social services should agree as long as the request is reasonable. An example of the request not being reasonable would be if you had very recently had your care and support plan reviewed and your support needs have not changed since then. 

After the suggested initial review of your support package, social services then they have a duty to review the care and support plan and the services you are being offered at least once a year to make sure that the plan still meet your needs and that your needs haven’t changed. This is sometimes called an annual review or review of care needs meeting.

Social services are not allowed to use your review with an aim to reducing your support for no reason or to save money.

Should my family still be involved in my needs assessment and care and support reviews, now I’m an adult?

Social services have a duty to involve your carer and any other interested party in your welfare in both the assessment process and reviews of your support, as long as you are happy with this. If you lack the mental capacity to make decisions about your care and support then the local authority have a duty to involve anyone in reviews and assessments who has an interest in your welfare.

Carer's assessments

If you are providing care for someone with an ASD you will be entitled to a carer's assessment. Previously you had to be providing this care on a regular and substantial basis but the Care Act 2014 now entitles anyone who provides care to an assessment. Read more about support for carers and carers assessments

Glossary/jargon buster

Care and Support Needs - this is the new term introduced by the Care Act 2014 to cover all of a person's social care needs

Carer - in terms of this document and the Care Act 2014 when we are referring to a Carer this means a family member or friend who is offering you informal support rather than a paid carer

Duty - this means that social services/the local authority are required to do this by law

Outcomes - in relation to the current legislation this means whether or not you are able to achieve something specific and what level of support you need to achieve this (for example whether you are able to develop relationships without prompting or do your laundry without someone to help you)

Significant impact - see the section "What does significant impact mean?" above

Wellbeing - Social services are required to make sure that your well being is considered with each action that they take. For an explanation of the areas of well being that they need to consider see the section above titled "How does social services assess if someone is 'not able to achieve' an outcome?"

Future changes and further information

While the relevant areas of the Care Act mentioned above become law from April 2015, some other sections don’t become law until April 2016. Changes to charging will take place from 2016 and there is also going to be an appeals process for challenging social services decisions. More on this will be added to the NAS website in future. 

Further information