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.
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.
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
- 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.
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.
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.
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.
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.