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 used on this page:
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.
HSCTs: we’ve used this abbreviation for Health and Social Care Trusts. HSCTs are responsible for ensuring the assessment and provision of social services support in Northern Ireland.
What is community care?
There is no definition of the term community care in Northern Ireland law but it has been loosely interpreted to mean the provision of both social care and health care 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 who have 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 services can include such things as:
- support offered to a person at home
- access to respite and day care
- family placements
- the provision of sheltered housing
- placement in group homes and hostels or residential and nursing homes.
The Government policy paper People First: Community Care in Northern Ireland in the 1990s set out to improve the management and delivery of care services. The fundamental principle is that a person who needs care and support should be encouraged and assisted in order to enable her/him to live with as much independence as possible in the community.
The community care framework
The process that health and social care trusts 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 HSCT will determine whether you have needs which meet their eligibility criteria.
- Care Planning - once a HSCT 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 might need support from your local HSCT you should contact them to request a health and social care assessment.
Section 4 of the Disabled Persons (NI) Act 1989 sets out that a person with a disability who requests an assessment is entitled to be assessed for community care services. This duty arises irrespective of the likelihood of services being provided.
Also, People First, care Management: Guidance on Assessment and the Provision of Community Care sets out that:
Health and Social Services Boards (now know as HSCTs) will be required to assess the care needs of any person who appears to them to be in need of community care services and to decide, in the light of that assessment, whether they should provide or arrange for the provision of services.
Anyone can contact their HSCT to request an assessment. People come to the attention of their HSCT in a number of ways. They may notify the HSCT of their needs themselves, or a friend or relative or another professional like a GP may contact the HSCT on their behalf.
If you want to ask for a health and social care assessment, we have a model letter you can use as a template. Keep a copy of the letter you send. Keep all subsequent correspondence between yourself and the trust in a safe place. If you have any problems the correspondence will make it easier to investigate these problems later on.
If you have made a request for an assessment or you know someone else has and you haven’t heard from the HSCT within four to six weeks, you should give them a call to find out what is happening.
The assessment itself should be carried out within a reasonable time and you should be told if there is likely to be any delay.
If the HSCT decides not to assess your needs you are entitled to complain, for more about complaints click 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 support for carers.
A health and social care assessment identifies your needs and, if you are eligible for support, it is used to create a care plan.
A social care worker 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 which impact on your day to day life, including:
- physical health
- mental health
- capacity for the activities of daily living and self care
- abilities and lifestyle
- the contribution of informal carers
- social network and support
- environmental factors
The social care worker should try to find out what your likes and dislikes are. If you hate noise it would not be appropriate for the social care 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 with you during the assessment. The social care worker should also speak to your parents or carers to find out about your likes and dislikes. Use the Autism Services Directory to find local advocacy services.
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 for you at the moment may not be able to in the future. The HSCT should arrange a periodic review of the care plan and the services you are being offered.
All appropriate agencies and professionals involved with a person and his/her needs should be brought into the assessment procedure. These may include, for example, family members, health professionals and voluntary workers.
All HSCTs carry out assessments slightly differently. This means that we cannot say for sure what questions you will be asked or how long it will take.
What happens after the assessment
If you have had an assessment of needs, this does not mean you will automatically receive care services.
Northern Ireland Health Trusts use regional eligibility criteria set out by the Department of Health, Social Services and Public Safety (DHSSP) to determine eligibility for adult social care services.
The DHSSP’s circular Regional Access Criteria for Domiciliary Care, May 2008 (circular ECCU 2/2008) provides a framework for a more consistent approach to eligibility and fair access to care services. The key principle behind these eligibility criteria is that people should be helped wherever possible to live independent lives with safety and dignity in their own home. The eligibility criteria are designed to determine how vulnerable a person is, what risk they face now and in the future and to ensure that those at greatest risk are given the highest priority.
The guidance in the circular distinguishes between ‘presenting’ and ‘eligible’ needs. Presenting needs are the issues identified when an individual is referred to the HSCT for social care support. Eligible needs are those presenting needs for which the Trust will provide help because they fall within the eligibility criteria. The assessor should risk-assess presenting needs to determine the consequences of non-provision.
The guidance sets out four ‘bands’ that define people’s needs, in terms of the risk to their independence (or other consequences) if their need for services is not met. The four bands are low, moderate, substantial and critical. Services will be provided to those individuals who fall within the critical or substantial risk to independence and support cannot be sourced from elsewhere. Where a service cannot be provided, individuals should be given advice and information about assistance available from other organisations.
Critical – when:
- life is, or will be, threatened; and/or
- significant health problems have developed or will develop; and/or
- there is, or will be, little or no choice and control over vital aspects of the immediate environment; and/or
- serious abuse or neglect has occurred or will occur; and/or
- there is, or will be, an inability to carry out vital personal care or domestic routines; and/or
- vital involvement in work, education or learning cannot or will not be sustained; and/or
- vital social support systems and relationships cannot or will not be sustained; and/or
- vital family and other social roles and responsibilities cannot or will not be undertaken
- hospital discharge is delayed.
Substantial – when
- there is, or will be, only partial choice and control over the immediate environment; and/or
- abuse or neglect has occurred or will occur; and/or
- there is, or will be, an inability to carry out the majority of personal care or domestic routines; and/or
- involvement in many aspects of work, education or learning cannot or will not be sustained; and/or
- the majority of social support systems and relationships cannot or will not be sustained; and/or
- the majority of family and other social roles and responsibilities cannot or will not be undertaken
- significant possibility of inappropriate admission to hospital or residential care.
Moderate – when
- there is, or will be, an inability to carry out several personal care or domestic routines; and/or
- involvement in several aspects of work, education or learning cannot or will not be sustained; and/or
- several social support systems and relationships cannot or will not be sustained; and/or
- several family and other social roles and responsibilities cannot or will not be undertake.
Low – when
- there is, or will be, an inability to carry out one or two personal care or domestic routines; and/or
- involvement in one or two aspects of work, education or learning cannot or will not be sustained; and/or
- one or two social support systems and relationships cannot or will not be sustained; and/or
- one or two family and other social roles and responsibilities cannot or will not be undertaken.
If your needs do not meet the eligibility criteria set by your HSCT, you will not receive community care services. However, this decision can be challenged through the complaints procedure.
Once a comprehensive individual assessment has been completed, and you are found eligible for services, the HSCT will develop a care plan. The main contact for the individual is the care manager, who takes responsibility for designing and assembling a package of services tailored to meet your needs and for ensuring the services are effectively coordinated, delivered and monitored.
What services will I get?
If you live at home with your family, or by yourself, and are happy where you are, then the HSCT may offer home-based services. The range of home based services are outlined in the Chronically Sick and Disabled Persons (Northern Ireland) Act 1978. These services can be made available to both children and adults and include the provision of:
- practical assistance in the home. This might mean having someone come round to help with cleaning or cooking, or they could help you with paperwork such as bills and letters. If you have personal care needs, practical assistance could mean helping 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).
If you are living at home with your parents and it is more appropriate for you to live independently, you should ask your social care worker for advice. For more information see our guide on support options.
Under the Carers and Direct Payments Act (NI) 2002, HSCTs must 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.
How soon can I expect services to be provided?
When your health and social care assessment has been completed you should ask your social care worker how soon the services you need will be provided. If you have been assessed as needing a service then the HSCT is legally bound to provide this. Sometimes you may have to wait a short time for services to become available. In all cases HSCTs 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?
HSCTs 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.
What happens if I am not eligible?
If your HSCT 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 HSCT 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 HSCT 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.
Voice Of Young People In Care (VOYPIC) is an independent regional charity that seeks to empower and enable children and young people up to the age of 25 with an experience of care to participate fully in decisions affecting their lives through the provision of independent advocacy.
Who will manage my money and legal affairs if I cannot?
If you are not capable of managing your own financial affairs, then you may need someone to manage them on your behalf. This can be done in a variety of ways.
Appointee: Under Regulation 33 of the Social Security (Claims and payments) (NI) an appointee can act on your behalf if you cannot claim benefits for yourself because of mental capacity. This provision does not apply to you if you can understand or control your own affairs. You will need to contact your social security office about arranging this.
Agent: You can appoint an agent if you understand your own affairs, but for example have a mobility problem which causes difficulty in dealing with financial matters such as claiming social security benefits. You will need to contact your social security office about arranging this.
Power of attorney: If you are physically incapable of managing your affairs you may appoint someone to act for you by giving that person power of attorney. A Power of Attorney is a legal document giving someone else the authority to take actions or make decisions on your behalf, for example property, and/or financial affairs. A Power of Attorney ceases in the event of you becoming mentally incapable of managing your affairs.
Enduring power of attorney: This allows you to appoint one or more persons to act on your behalf should you become incapable of managing your affairs in the future. An Enduring Power of Attorney will continue should you become mentally incapable of managing your affairs. To become effective, all Enduring Powers of Attorney need to be registered with the High Court (Office of Care and Protection).
Controller: Under the Mental Health Order (NI) 1986 as a parent or carer of someone who lacks mental capacity you could become a controller to make certain decisions in the individual’s best interests. It is the Office of Care and Protection which deals with the appointment of controllers.
I live in a residential home. Can my parents still get involved in my care?
Care managers should consult parents when conducting an initial assessment and in making a placement. Beyond that, the picture is confused. Most residential service providers will have a policy on involving a client's family in provision and you should ask to see this policy when choosing a placement. When a person has a condition like autism, which can lead to great social isolation it is very important to maintain links with family and friends. It is good practice for care homes to support these links. Conflict can arise where a parent feels that the service is not suitable for their child’s needs, but on these occasions they are still entitled to complain either through the complaints procedure of their child's service provider or through their local authority, if they are funding the care.