Many adults with an autism spectrum disorder (ASD) will need help and support in order to live independently in the community. Others may need accommodation in a residential home in order for all their needs to be met.
This is a guide to how adults with an autism spectrum disorder (ASD) can get the right services for them.
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 (both high- and low-functioning), Asperger syndrome, pervasive developmental disorders and a range of diagnoses referring to conditions across the autism spectrum.
- SWD(s): we've used this abbreviation for social work department(s). These are the departments within your local authority, which are most likely to be responsible for funding any extra support you need.
What is community care?
Community care refers to services provided to vulnerable members of society to enable them to live as independently as possible for as long as possible. Vulnerable members of society could be people with disabilities, older people, people with chronic health problems or mental health needs, drug and alcohol users and many others besides. However, not everyone belonging to these groups will need community care and not everyone who has community care needs fits neatly into one of these categories.
Community care is also a legal term. In the context of the law, community care refers to those non-medical services provided by social work departments to help anyone over the age of 18 in the community who is assessed as needing such services.
The law entitles all people who have care needs to services appropriate to meet those needs. Most community care services are provided or arranged by local authorities through their social work departments (SWDs). Some community care services are provided through health authorities. Where someone is assessed as having health care needs as well as social care needs there can be a joint funded package provided by both social services and the health authority.
The community care framework
The process that SWDs are required to undertake falls into four distinct areas:
- Assessment – in order to get services you will first need to be assessed as needing them.
- Service Provision decision – 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 charge that is applicable.
How do I get an assessment?
If you think you may need support from your local SWD, you should contact them to request a community care assessment.
Adults have a right to an assessment under the NHS and Community Care Act 1990 and the Social Work (Scotland) Act 1968. Social services are under a duty to carry out an assessment where there is an apparent need. This duty arises irrespective of likelihood of services being provided.
Anyone can contact their local SWD to request a community care assessment. People come to the attention of their local SWD in a number of ways. They may notify the SWD of their needs themselves, or a friend or relative or another professional like a GP may contact the SWD on their behalf.
If you want to ask for a community care assessment you can use this template letter. When you write to the authority asking for an assessment, make sure you keep a copy of the letter you send. Keep all subsequent correspondence between yourself and the authority in a safe place. If you have any problems the correspondence will make it easier to investigate these problems later on.
There is no statutory time limit on assessments. If you have made a request for a community care assessment or you know someone else has and you haven’t heard from the social work department within 4 to 6 weeks, you should give them a call to find out what is happening
If the SWD decides not to assess your needs you are entitled to complain. Find more information about complaints here.
If you are providing care for someone with an ASD on a regular and substantial basis, you will be entitled to a carer’s assessment. The purpose of the carer’s assessment is to find out whether you have needs in relation to the care you are providing and whether the authority should provide you with any services to help you carry out the care. To find out more see our information guide on support for carers.
A social services assessment is used to identify the needs of an individual who has disabilities and to create a support plan to decide how these needs can be met.
A social worker, community care adviser or occupational therapist will visit you at home to carry out an assessment. They will complete forms about how much care you need each day. They need to take into account a number of different factors when completing the assessment including
- personal/social care
- any communication, psychological or other needs associated with the ASD you have.
The social worker should try and find out what your likes and dislikes are. If you hate noise it would not be appropriate for the social worker to suggest you go to a day centre near a busy main road. If you find it hard to express your likes and dislikes then you may want a friend or advocate being with you during the assessment. The social worker should also speak to your parents or carers to find out about your likes and dislikes. Use the Autism Services Directory to find advocacy services in your area.
Even if you are coping OK at the moment, the social worker needs to consider what needs you may have in the future. The amount of care you need may change or the people who are caring or you at the moment may not be able to in the future. The SWD should arrange a review of the care plan and the services you are being offered at least once a year.
SWDs all carry out community care assessments slightly differently. This means that we cannot say for sure what questions you will be asked or how long it will take.
If you have health problems or do not have suitable housing your social worker should let the relevant professionals know and they should also assess your needs. In some circumstances they may want to work with your GP or seek an assessment of your psychiatric or psychological needs.
If you have had an assessment of needs, this does not mean you will automatically receive care services. The National Standard Eligibility Criteria sets out the eligibility criteria for adult social care in Scotland. It says that everyone should be treated fairly and that the people who are in most need of services should receive them. The eligibility framework prioritises risks into four bands: critical, substantial, medium and low.
Critical risk indicates that there are major risks to an individual’s independent living or health and well-being likely to call for the immediate or imminent provision of social care services.
Substantial risk indicates that there are significant risks to an individual’s independence or health and wellbeing likely to call for the immediate or imminent provision of social care services.
Moderate risk indicates that there are some risks to an individual’s independence or health and wellbeing. These may call for the provision of some social care services managed and prioritised on an ongoing basis or they may simply be manageable over the foreseeable future without service provision, with appropriate arrangements for review.
Low risk indicates that there may be some quality of life issues, but low risks to an individual’s independence or health and wellbeing with very limited, if any, requirement for the provision of social care services. There may be some need for alternative support or advice and appropriate arrangements for review over the foreseeable future or longer term.
SWDs refer to these four bands to decide whether people qualify for support from social care or health services. SWDs will usually refer to this as a person 'meeting the eligibility criteria'. Each local authority decides, according to their own resources, which people they can support, In recent times the majority have adopted a policy to provide community care services to meet needs which fall within the substantial or critical category. If your needs do not meet the eligibility criteria set by your local authority, you will not receive community care services. However, this decision can be challenged through the complaints procedure.
Below we provide definitions of risk factors for each of the bands in the national eligibility framework.
Risks relating to neglect or physical or mental health
- Major health problems which cause life threatening harm or danger to client or others.
- Serious abuse or neglect has occurred or is strongly suspected and client needs protective intervention by social care services (includes financial abuse and discrimination).
- Significant health problems which cause significant risks of harm or danger to client or others.
- Abuse or neglect has occurred or is strongly suspected (includes financial abuse and discrimination).
- Some health problems indicating some risk to independence and/or intermittent distress, potential to maintain health with minimum interventions.
- Vulnerable person need to raise their awareness to potential risks of abuse.
- Few health problems indicating low risk to independence, potential to maintain health with minimum interventions.
- Preventive measures including reminders to minimise potential risk of abuse.
Risks relating to personal care/domestic routines/home environment
- Unable to do vital or most aspects of personal care causing a major harm or danger to client or others or major risks to independence.
- Unable to manage the most vital or most aspects of domestic routines causing major harm or danger to client or others or major risks to independence.
- Extensive/complete loss of choice and control over vital aspects of home environment causing major harm or danger to client or others or there are major risks to independence.
- Unable to do many aspects of personal care causing significant risk of danger or harm to client or others or there are significant risks to independence.
- Unable to manage many aspects of domestic routines causing significant risk of harm or danger to client or others or significant risk to independence.
- Substantial loss of choice and control managing home environment causing a significant risk of harm or danger to client or others or a significant risk to independence.
- Unable to do some aspects of personal care indicating some risk to independence.
- Able to manage some aspects of domestic activities indicating some risk to independence.
- Able to manage some aspects of home environment, leaving some risk to independence.
- Difficulty with one or two aspects of personal care, domestic routines and/or home environment indicating little risk to independence.
- Able to manage most aspects of basic domestic activities.
- Able to manage most basic aspects of home environment.
Risks relating to participation in community life
- Unable to sustain involvement in vital aspects of work/education/learning causing severe loss of independence.
- Unable to sustain involvement in vital or most aspects of family/social roles and responsibilities and social contact causing severe loss of independence.
- Unable to sustain involvement in many aspects of work/education/learning causing a significant risk to losing independence.
- Unable to sustain involvement in many aspects of family/social roles and responsibilities and social contact causing significant distress and/or risk to independence.
- Unable to manage several aspects of involvement in work/learning/education and this will, in the foreseeable future, pose a risk to independence.
- Able to manage some of the aspects of family/social roles and responsibilities and social contact, that pose some risk to independence.
- Has difficulty undertaking one or two aspects of work/learning/education/family and/or social networks indicating little risk to independence.
- Able to mange most of the aspects of family/social roles and responsibilities and social contact, that pose some risk to independence.
Risk relating to carers
- Carer has major physical/mental health difficulties due to the impact of their role as a carer causing life threatening harm or danger to themselves or others.
- There is a complete breakdown in the relationship between client and carer and carer is unable to continue caring or has difficulty sustaining vital or most aspects of their caring role.
- Carer is unable to manage vital or most aspects of their caring/family/work/domestic/social roles and responsibilities.
- Carer has significant physical/mental health difficulties due to the impact of their role as a carer causing significant risk of harm or danger to themselves or others
- There is a significant risk of breakdown in the relationship between client and carer and carer is unable to sustain many aspects of their caring role.
- Carer is unable to manage many aspects of their caring/family/work/domestic/social roles and responsibilities.
- Carer able to manage some aspects of the caring/family/domestic/social roles. Potential risk to breakdown of their own health identified.
- Relationship maintained although at times under strain between client and carer/limiting some aspects of the caring role.
- Carer is able to manage some aspects of their caring/family/work/domestic/social roles and responsibilities.
- Carer able to manage most aspects; has difficulty undertaking one or two aspects of their caring/domestic role but with low risk.
- Relationship maintained between client and carer by limiting aspects of the caring role.
- Carer is able to manage most aspects of their caring/family/work/domestic/social roles and responsibilities.
If you are found to be eligible for services, social services should develop a care plan with you. The care plan should include the following information:
- what your needs are and any related risks
- what services you would prefer
- a plan in case of emergency
- details of services you will be receiving, any charges or if you will be receiving a direct payment
- any care your carers are willing and able to provide
- a date to review the plan.
What services will I get?
If you currently live at home with your family, or by yourself, and are happy where you are, then the SWD may offer home-based services. The range of home-based services that a local authority can provide are outlined in the Chronically Sick and Disabled Persons Act 1970. These services include the provision of:
- practical assistance in the home. eg having someone come round to help with cleaning or cooking, help you with paperwork such as bills and letters, or help you or encouraging you to wash, dress or get out and about
- equipment such as radio, TV or computer to satisfy a recreational or educational need
- recreational facilities such as day centres and drop in clubs
- assistance in travelling to community based care services
- home adaptations
- meals (at home or elsewhere).
Under the Social Work (Scotland) Act 1968, the local authority can offer direct payments to you as an alternative so that you can arrange your own support services instead of using social work services. Most local authorities now allow people to receive the funding for their services in the form of Direct Payments. Direct payments are a cash payment made in place of social service provision enabling you to buy the services yourself. For many reasons direct payments are seen as a very positive move for people assessed in need. They may represent a move towards empowering individuals to have more choice in the kind of support they need. Flexibility can be increased over when, how and where support services are delivered. In areas where perhaps there is a lack of formal support services for people with an ASD, a person can actively seek to employ their own carer and negotiate with them the help they need.If you want to move
If you are living at home with your parents and it is more appropriate for you to live independently, you should ask your social worker for advice. For more information please see our information guide on support options.
How soon can I expect services to be provided?
When your community care assessment has been completed you should ask your social worker 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. You have a right to complain if you have to wait a long time without getting any services.
Will I be charged for the services I receive?
Under the Social Work (Scotland) Act 1968 local authorities have the discretion to charge users for the services they receive. 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. People over the age of 65 years who require help with personal care cannot be charged. For further information please see our information about charging for community care.
What happens if I am not eligible?
If your local authority decides you are not eligible for services, or decides to withdraw or change its services, then it must be satisfied that your needs will not change in the near future. The local authority should write to you and give reasons for their decision, and provide you with details of other agencies that may be able to help you. The local authority should also give you details about its complaints procedure.
The role of parents
Once you reach adulthood at 18 the law presumes that you are capable of making decisions for yourself, unless there is evidence that this is not the case. This means that legally no-one, including parents, has the authority to make decisions on your behalf. However, with many decisions getting some help and advice from friends and family is a very good idea. Such decisions might be whether or not you should move house or change jobs. All adults need to talk through big decisions with other people sometimes.
For some people with ASD, explaining what they need and want can be very difficult or even impossible. This is true for people right across the spectrum. Even people who are extremely able and independent may find it hard to get service providers to listen to their point of view. If this is the case for you your parents may need to speak up on your behalf. If you think your parents may not be listened to or may not have your best interests at heart then you might want to find an independent citizen advocate. A citizen advocate is someone who gets to know what you like and don’t like and is able either to help you to say what you want or to say things on your behalf. If you want to find out about advocacy services in your area contact Scottish Independent Advocacy Alliance.
Who will manage my money and legal affairs if I cannot?
If you are not able to make decisions about money then you may need someone to be appointed to manage your money on your behalf.
If you are claiming benefits a carer can make applications and receive the money on your behalf. This is called being the 'appointee'. You will need to speak to the DWP about arranging this.
The Adults with Incapacity (Scotland) Act provides a range of options to help those who are or may become incapable of looking after their own financial or welfare affairs. It is the Office of the Public Guardian (Scotland) which ensures the guiding principles of the Act are adhered to. Some of the functions include:
- "Access to Funds"; this is a procedure which allows an individual, individuals or organisations to obtain authority to access and manage the funds held in, for example, a bank or building society account. The account(s) must be in the sole name of an adult who is or no longer able or capable of accessing their funds and would be used to pay for an adults day to day living expenses.
- A Power of Attorney is an authority given by an individual (known as the Granter) to another person(s) (known is the Attorney/s) to deal with aspects of the Granter's affairs. This could relate to financial/property matters and/or personal welfare. Powers relating to the Granter's financial/property affairs are known as "continuing powers" and powers relating to the Granter’s welfare are known as Welfare powers. Welfare Powers cannot be exercised until such time as the Granter has lost the capacity to make these decisions. A power of attorney document can contain either continuing powers, welfare powers or a combination of both.
- A guardianship order is a court appointment which authorises a person to take action or make decisions on behalf of an adult with incapacity. A guardianship order can be in relation to property and financial matters, personal welfare, or a combination of these.