Many adults with autistic spectrum disorders (ASD) will need help and support in order to live independently. Others may need accommodation in a residential home in order for all their needs to be met. The following are answers to some frequently asked questions about how adults with ASD can get the right services for them. The information provided in this factsheet is based on our understanding of the law. Mostly, we haven't quoted the law directly. Instead Appendix 6 lists the range of legislation, which can affect people seeking community care.
For simplicity, this guide is addressed directly to adults with ASD who are able to understand and interpret the information themselves. However, it is also intended to be used by parents and carers to find out more about the rights and entitlements of the person they and caring for.
This information is intended as a guide only. Legislation and case law relating to rights in community care are constantly evolving and changing. If you have a problem with community care services you should seek specialist advice on what your rights are. Useful contacts for advice are given at the end of this article.
ASD - we've used this to refer to autistic spectrum disorders throughout.
Local Authority - local authorities are the local government bodies, which have responsibility for providing most community care services.
Social Services Department (SSD) - the SSD is the section within the local authority which has responsibility for assessing community care needs and arranging services.
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 who are disabled, 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 services departments to help anyone within over the age of 18 within the community who is assessed as needing such services. Some community care services are also available to children. You can find out more about this in our factsheet 'Help with caring for a child with ASD'. Community care does not include services such as educational provision (whether it is for children or adults), welfare benefits, healthcare or employment services. It is not the responsibility of social services departments to fund or provide these services themselves. If you are having problems with any of these services, there are specialist advice agencies which can help. Details of these are listed at the end of this factsheet.
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 Services Departments SSDs. Some community care services are provided through health authorities. This is particularly the case when an adult has had mental health needs and requires help to live in the community. 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.
In order to get services you will first need to be assessed as needing them. Normally, an assessment will be carried out by a social worker from your local SSD. They should then draw up a document known as a care plan. This will set out in which areas you need help and how this help is going to be provided. Once a local authority has identified a person as having needs which meet their eligibility criteria, they must ensure that services are offered to meet those needs. You can find out more about these eligibility criteria by asking the authority for a copy of their community care plan.
People come to the attention of their local SSD in a number of ways. They may notify the SSD of their needs themselves. A friend or relative may do this for them, particularly if this person is caring for them already. Or another professional like a GP may contact the SSD on their behalf. If you want to ask for a community care assessment a model letter you can use as a template for your own is given in Appendix 1. 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.
However the referral is made, the SSD have a duty to carry out an assessment where there is an apparent need. If you have a disability, then you have an apparent need. 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 services department within two weeks, you should give them a call to find out what is happening.
If the SSD decides not to assess your needs you are entitled to complain. To find out more about complaining go to question 8.
You may already have had an assessment and not be aware of it. Social workers should make sure that a copy of the assessment and care plan is sent to the person who has had the assessment but sometimes this does not happen. If you receive services from your local authority at the moment, you should ask your social worker or the SSD if you have a care plan and if you can have a copy. If you have a social worker but are not receiving any help you should ask them if you have had a community care assessment. You are also entitled to ask for a copy of the assessment report.
In the year that you turn 14 your Local Education Authority should notify your SSD that you are reaching school leaving age and may require services when you leave school. The SSD should be involved in meetings where your transition plan is discussed. If they are not involved, you can contact them to ask why.
As part of the transition planning process, the SSD should get an idea of what your future needs might be and arrange a community care assessment. They will then draw up a care plan. They must make sure that you get any help that your care plan says you need.
You can request a community care assessment on behalf of the person you are caring for. A model letter for doing this is provided in Appendix 1.
If you are providing care for someone with an ASD on a regular and substantial basis you will be entitled to a carers assessment. The purpose of the carers 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.
A social worker will visit you at home to carry out an assessment. They will complete some 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:
The social worker should look at the impact of your needs on your day-to-day life, not at the needs alone. For example, if you have high levels of anxiety you may need someone to be with you to calm you down when you get agitated. You may also need help with going out to the shops or to work because these activities make you anxious. The assessment should be comprehensive and should include consideration of the following needs: personal/social care; health; accommodation; finance; education/employment/leisure; transport/access and 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 to be with you during the assessment. The social worker should also speak to your parents or carers to find out about your likes and dislikes. To find out more about advocates go to question 8.
Even if you are coping OK at the moment the social worker needs to consider what needs you may have in the future. 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. Because your needs may well change the SSD should arrange a review of the care plan and the services you are being offered at least once a year.
SSDs 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 currently live at home with your family or by yourself and are happy where you are then the SSD 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 can be made available to both children and adults and include the provision of:
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 physical needs practical assistance could mean helping you to wash, dress or get out and about.
This could include the purchase of a personal computer or a hi-fi system.
Recreational/educational facilities include places in day centres. These services must be provided outside the home.
The local authority is entitled to charge for transport provision. However, they must ignore the mobility component of Disability Living Allowance (DLA) (if you get it) when making their assessment.
These services can also be offered to children. You can find out more in our factsheet on Help with caring for a child with ASD.
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. They may refer you to your local housing department who will try to find somewhere for you to live. They may put you in touch with local housing associations or with an advice centre which can help you find housing. If you need to live in a supportive environment where help is on hand through the day, then the SSD can help you find a place in a residential service. Residential services vary in the level of support they offer. In some services there will be carers around helping the people living in the service throughout the day and night. In others carers may be around for just part of the day or be on call if you need them.
Some services are run just for people with ASD, others cater for people with learning disabilities or mental heath needs as well. If you want details of services that are just for people with ASD then the NAS has a database, which they can search for you. At present there are only a few services which are just for people with high functioning autism or Asperger syndrome. Call the Autism Helpline for more information.
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 LA 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.
You may be. Local authorities have the discretion to charge users for the services they receive. The charges you will be expected to pay will be means tested. Only your income should be taken into account. If you are 18 and over and living at home with your parents but you are the person who needs help then the local authority should not look at your parents' income when deciding how much to charge.
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 the local authority decides to assess your financial situation the guidance states that they should only do this once the community care assessment has been completed. They should be prepared to answer your questions about financial assessment if you have any, and to pass on written information to you about their criteria for assessing financial resources. Again all local authorities will use slightly different criteria so the levels of financial resources you will need to have will vary between different areas.
If you own your own flat or house and you only need home-based services, then the value of your home should not be taken into account when carrying out a financial assessment.
Most local authorities now allow people to receive the funding for their services in the form of Direct Payments. If you are given Direct Payments you will be able to appoint your own staff to help you or fund the day centre placement you want. Direct Payments can also be given to carers so they can fund respite care services. It's important to think carefully before taking up Direct Payments because finding staff or suitable services can be stressful and hard work.
If you are moving into residential care and a means test is being carried out then the rules are different. The guidance on means testing in residential care is available from the Department of Health (details are given in Appendix 5). You or your parents or carers should seek specialist advice if you have any questions about financial assessment.
Essentially yes, you have exactly the same rights as anyone else. If you have recently been discharged from hospital you should have a named social worker who is responsible for ensuring that you receive appropriate services in the community.
There is one big difference however. If you have been compulsorily detained in hospital for treatment (not just assessment) then the local authority has a duty to provide you with appropriate services when you are discharged. Unlike other users of care in the community you cannot be charged for these services.
The complaints procedure for adults in England changed to a simpler system on 1 April 2009. It was introduced through the Local Authority Social Services and NHS Complaints (England) regulations 2009. These regulations cover health services and social services.
The new complaints system applies to any complaints made about:
If people are not able to make the complaint themselves, or have asked another person to act on their behalf, a supporter or advocate (such as a parent or carer) can make the complaint.
Complaints have to be made within 12 months of an incident occurring that you were unhappy about, or notice being given. Complaints about incidents that occurred more than 12 months ago will only be accepted if there is good reason for the delay.
You can make a complaint verbally, in writing or in an email. If you make a verbal complaint, a copy of what you have said should be written out and sent to you, to make sure that your complaint has been understood.
Once your complaint has been received, you will be sent an acknowledgement. You should be offered the chance to discuss your complaint and how it will be handled, including how long it will take to be resolved.
You do not have to discuss your complaint at this stage. If you chose not to the information that would have been discussed with you will be sent to you instead. But if you do choose to discuss your complaint, the things you say should be written down and a copy sent to you.
The complaint will then be investigated in as quick and effective a way as possible. This might mean that an internal investigation is carried out, or an investigation by someone outside of the organisation. You must be kept informed of progress.
You should get a full response to your complaint within six months of the date you originally complained. If this isnt possible, you should get a written explanation and a response should be provided as soon as possible afterwards. (There is no set timeframe within which a complaint must be fully responded to, but if there are significant delays, you could bring this to the attention of an ombudsman. See below for more about ombudsmen.)
Organisations who deal with complaints now have to keep records for monitoring purposes and produce annual reports that can be viewed by the public, on request.
Once the complaint investigation has been completed, a report will be written up about the way the complaint has been dealt with and the conclusions the investigation has reached. If any action is to be taken to resolve the issue, this will be confirmed now. You will also be told about your right to contact the local government or health service ombudsmen if you are not happy with the response you receive.
If you write a letter of complaint, send a copy to the complaints manager at the organisation. The complaints manager logs all complaints on a database. The manager also guides patients and staff through the complaints procedure and promotes changes in the service where they are thought to be needed.
You should keep a copy of all the letters that you send and only ever send copies of important supporting documents. Try not to send the original documents.
If you have tried to resolve an issue through the complaints process but have not had a satisfactory resolution, you have two options - an ombudsman or judicial review.
If you have been through your local authority's complaints procedure and you are still not happy with the way things have been handled you may be able to complain to the Local Government Ombudsman. The Ombudsman can only deal with cases where maladministration has occurred. For example, if you had to wait a very long time for your social services department to carry out an assessment this could constitute maladministration. The Ombudsman cannot deal with your complaint if you are unhappy with the quality of the services you have received.
The Health Service Ombudsman is very similar to the Local Government Ombudsman, but deals with complaints about the NHS. It investigates complaints about NHS hospitals, GPs, primary care trusts, health authorities, dentists, opticians, pharmacists and any other services provided by the NHS. It cannot look into complaints about private health services.
If you suspect that the local authority have acted outside the law, you may also be able to apply for leave to go to Judicial Review. This is a legal process, which reviews the decisions made by public bodies to ensure that they are within the law. You must seek legal advice before taking this step. Advice on finding legal advice is given at the end.
If you are receiving a service such as having a home help visit and you are unhappy with it you should complain to the person who manages that service as well as the local authority. If you live in residential accommodation with support and are not happy you should speak to the manager of the home you are living in. The organisation that runs the home will have a complaints procedure which you are entitled to see. If you feel your complaint is not being listened to then whoever is responsible for managing your care package from within the local authority should also be informed. You should also talk to a friend or member of your family whom you trust.
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 say what you want or to say things on your behalf. If you want to find out about advocacy services in your area a charity called Citizen Advocacy Information and Training can help. Their number is given in Appendix 3.
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 your main carer can make applications and receive the money on your behalf. The money will need to be put into a bank account in your name but the carer will be able to draw money out for you. You will need to speak to the Benefits Agency about arranging this.
If you are able to manage your money and property now but worry that at a later date this will not be possible you could write a Lasting Power of Attorney (LPAs). Lasting Powers of Attorney replaced Enduring Powers of Attorney (EPAs). Since October 2007 it has not been possible to create an EPA although ones already written are still valid.
An LPA is a legal document which gives certain people power to make decisions on your behalf. You can decide who these people are and they are known in the document as 'attorneys'. The forms needed to write a LPA can be obtained from the Office of the Public Guardian. Their details are given in Appendix 3.
There are two types of LPAS. The first is known as a Property and Affairs LPA. This gives the attorneys power to make decisions on your behalf about your property. The second is called a Personal Welfare LPA and allows your attorneys to make decisions about your social and health care. If you would like someone to make decisions about both your property and your health care you will need to have both a Personal Welfare and Property and Affairs LPA. A Property LPA does not give someone power to make decisions on your health. A Personal Welfare LPA does not give someone power to deal with your property.
You can put restrictions on what your attorneys can do in the LPA. For example, you can state on a Property and Affairs LPA that attorneys can only make certain decisions about your money.
Before either type of LPA can be used, they must be registered with the Office of the Public Guardian. Until an LPA is registered with them it is invalid and cannot be used. You or your attorneys can apply to have the LPA registered. The Office of the Public Guardian will only inform people the LPA is being registered if you have asked people to be informed on your LPA. Once registered an LPA can be used straight away.
Under the Mental Capacity Act 2005 a person can also make decisions on behalf of someone without an LPA or an EPA on a number of informal matters including welfare without having to apply to court. However, for some decisions, especially for those relating to property, it will be necessary for an application to be made to the Court of Protection. The Court can give someone powers to make a decision on a particular matter or may appoint someone to make ongoing decisions. These people are known as 'deputies'.
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.
Recently the government has instructed local authorities to offer the option of giving payments instead of services to people who have been assessed by social services to be in need of services. These are called direct payments and are available to both adults and children. A request to receive direct payments should now not be refused except in exceptional circumstances. In Wales however, local authorities can still choose to refuse to supply these.
For many reasons, direct payments are seen as a very positive move for people assessed as 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 autistic spectrum disorders, an individual can actively seek to employ their own carer and negotiate with them the help they need.
The local authority should supply you with enough funds to cover the expenses of employing someone directly. These expenses include tax, National Insurance, and police checks.
Notably the payments can only be used to support the needs assessed by the Local Authority.
For further information download a copy of 'An easy guide to Direct Payments' by visiting the following web page:
www.valuingpeople.gov.ukOr to receive a free copy through the post, write to:
Department of Health Publications,This web page also has further information: www.communityliving.org.uk/direct_payments.htm
Each area will administer and co-ordinate direct payments differently so contact your local Social Services for more information.