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 people aged 18 or over with an ASD how to access a needs assessment by social services and how social services work out who is eligible for support. This information 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 do qualify for support 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 All these pieces of legislation have been replaced by the Social Services & Well-being (Wales) Act 2014. This Act just applies in Wales.
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 Social Services & Well-being (Wales) Act 2014 (or the guidance/regulations that accompany it) say that social services have to do this by law.
You can read the Act, its code of practice and regulations at http://www.ccwales.org.uk/the-act/. The code of practice is the most user-friendly document and is broken into separate documents relating to different parts of the Act.
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 areas 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 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 local health boards. 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.
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 Social Services & Well-being (Wales) Act 2014. This duty was previously under section 47 of the National Health Services and Community Care Act 1990 until the end of March 2016. Social services have this duty to carry out an assessment 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. The duty to assess is triggered when the local authority become aware that you may have a need for care and support. 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, 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 sort things out.
Some local authorities may have an online form that you can complete to request a needs assessment.
There is no legal time limit for needs assessments to be completed within. If you or someone on your behalf has made a request for an 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 or are at risk of abuse or neglect, 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 the assessment should be proportionate to the needs of the individual. This means that they do not always have to do a full assessment. However they must consider the need for such things as: support, preventative services, information, advice or assistance and also whether you work or wish to do so; whether you want to participate in education, training or any leisure activity etc.
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.
The Act introduces 5 key elements that must be considered during an assessment. This requires a local authority to:
- assess and have regard to the person’s circumstances;
- have regard to their personal outcomes (see below);
- assess and have regard to any barriers to achieving those outcomes;
- assess and have regard to any risks to the person or to other persons if those outcomes are not achieved; and
- assess and have regard to the person’s strengths and capabilities.
The Welsh Government has issued a well-being statement for people who need care and support and carers who need support. Social services must focus on your well-being when carrying out their assessment of your needs and making decisions, in particular when thinking about the things you want to be able to achieve (your personal outcomes).
They particularly need to consider the following:
- physical and mental health and emotional well-being;
- protection from abuse and neglect;
- education, training and recreation;
- domestic, family and personal relationships;
- contribution made to society;
- securing rights and entitlements
- control over day-to-day life
- social and economic well-being;
- participation in work and
- suitability of living accommodation.
The assessment should assume that you are the best person to judge your own well-being. 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. The Social Services & Well-being (Wales) Act 2014 introduces a new duty to involve anyone acting as an informal carer in your assessment ‘so far as is feasible’. It should be your choice to involve a carer, friend or advocate during your assessment.
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. However, guidance makes it clear that seeking input from other professionals should not delay arranging your care and support.
Which social services team will carry out my needs assessment?
The Social Services & Well-being (Wales) Act 2014 does not state 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 Social Services & Well-being (Wales) Act 2014, if they may have a need for care and support. For example, if you don’t have a diagnosis of ASD but you are unable to so some of the tasks in the determining eligibility list below then you are still entitled to have your needs assessed.
Whichever team the assessor comes from, the Care and Support (Assessment) (Wales) Regulations 2015 state that there must be a named person for every assessment and that she / he must have the skills, knowledge and competence to carry out the assessment and have received training in the carrying out of assessments. Part three of the code of practice specifies the qualifications that the assessor should have.
Determining eligibility and how social services work this out
The 'needs assessment' will determine what support you need. Having an assessment of needs does not mean you will automatically receive support.
An assessment will conclude with one of the following:
- there are no needs to be met;
- a more comprehensive assessment is required, which may include more specialist assessments;
- needs can be met through the provision of information, advice or assistance;
- needs can be met through the provision of preventative services;
- needs can be met, wholly or in part, by the individual themselves (with or without the assistance of others);
- other matters can contribute to the achievement of the personal outcomes, or otherwise meet the needs;
- needs can only be met through a care and support plan, or a support plan (an eligible).
- the local authority considers it necessary to meet the needs in order to protect the person from abuse or neglect or a risk of abuse or neglect
Social services use eligibility criteria from the Social Services & Well-being (Wales) Act 2014 to work out who they will give care and support to. For the first time an eligibility level that is the same across Wales has been introduced. This means that if you have a certain level of needs you will be eligible for support no matter which local authority in Wales you live in.
Summary of eligibility criteria
To be eligible for support from social services the following must be the case:
1.The need arises from physical or mental ill-health, age, disability, dependence on alcohol or drugs or other similar circumstances;
2. The need relates to a set of standard tasks (outcomes):
- Ability to carry out self-care or domestic routines [see below for a definition of ‘self-care’];
- Ability to communicate;
- Protection from abuse or neglect;
- Involvement in work, education, learning or in leisure activities;
- Maintenance or development of family or other significant personal relationships;
- Development and maintenance of social relationships and involvement in the community
- Fulfilment of caring responsibilities for a child;
‘self-care’ is defined as ‘tasks that a person carries out as part of daily life including’
(i) eating and drinking;
(ii) maintaining personal hygiene;
(iii) getting up and getting dressed;
(iv) moving around the home;
(v) preparing meals;
(vi) keeping the home clean, safe and hygienic
3. The person is not able to meet that need, either—
- with the support of others willing to provide;
- with the assistance of services in the community to which the adult has access.
4. He / she is unlikely to achieve one or more of the personal outcomes unless the local authority provides or arranges care and support to meet the need. This can include providing a Direct Payment.
Your personal outcomes will relate to the standard tasks above and the well-being statement, the LA will not have a duty to meet needs that are related to activities that they cannot support such as access to health care, housing or education.
The code of practice says that you do not have to have tried to use services available in the community to know that they cannot meet a need. The social worker must show you and record how they can meet your needs before deciding that your needs are not eligible.
One problem with this eligibility criteria is that if an informal carer says that they are willing and able to meet your needs this could mean that you are found ineligible for support. It could also limit your right to choose who cares for you. For example a parent may be willing to support you but you may prefer to receive formal care and support. Your carer can tell the assessor that they will only be prepared to continue to care for you if you are found to be eligible for care and support. In order to have all your eligible needs identified it is advisable that informal carers do not confirm that they are willing and able to help care for you, until after an eligibility decision has been made.
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.
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 you should be told how to able to access preventative support services, such as befriending or social groups. You may be referred to the information, advice and assistance service or you may be referred directly to a community-based service. If you are not eligible for ongoing care and support from social services and are not clearly signposted, you should ask about this. The LA must record how your presenting needs will be met by preventative and community based services.
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 what your needs are and why your personal outcomes can only be achieved with the support from the local authority. For further information see: complaints.
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. You must be assigned a named individual who will co-ordinate the preparation, completion, review, delivery and revision of the plan. This may be the same person who completed your assessment.
The support plan must include the following information:
- the outcomes which have been identified
- the actions to be taken by the local authority and other persons to help you achieve those outcomes
- the needs that will be met through the delivery of care and support
- how progress towards achieving those outcomes will be monitored and measured
- the date of the next review of the care plan.
If it is appropriate the plan should also set out:
- the roles and responsibilities of you, your carers and family members, and practitioners
- the resources (including financial resources) required from each person
You are entitled to ask for all or some of your needs to be met through a direct payment (for more information please see our Direct Payments information) If you are receiving direct payments to meet any of your needs the plan must also include:
- the needs which are to be met by direct payments; and
- the amount of the direct payments and how often they will be paid.
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:
a) accommodation in a care home or in premises of some other type
b) care and support at home or in the community;
c) services, goods and facilities;
d) information and advice.
e) counselling and advocacy;
f) social work;
g) payments (including direct payments);
h) aids and adaptations;
i) occupational therapy.
For any of the above to be put in place a person must have been assessed as having an eligible need for the service.
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 or of you are at risk of abuse or neglect, social services can put support in place without an assessment being completed or while the assessment is taking place.
Charging for services
Local authorities have the discretion to charge users for the services they receive including Direct Payments (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.
Social services 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.
They should also review if significant changes take place or if the plan is no longer meeting your needs. 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.
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 Social Services and Well-being (Wales) Act 2014 now entitles anyone who provides care to an assessment (read more about support for carers and carers assessments here).
Care and Support Needs - this is the new term used by the Social Services & Well-being (Wales) Act 2014 to cover all of a person's social care needs
Carer - in terms of this document and the Social Services & Well-being (Wales) 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 (see section on “Personal Outcomes” 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 "Personal Outcomes”.
For information and advice about community care please contact the NAS community care advice service.