Caring for a child on the autism spectrum can be hard work. It can be hard work for parents who may have to provide far more help and support for their child with autism than they would for another child their age. It’s not always easy for siblings either. They may feel they have to take on caring responsibilities while still very young, or they may feel neglected because their brother or sister with autism takes up so much of their parents’ time.
In addition to these difficulties the typical breaks that most parents may get because their children go to visit friends or are able to do things by themselves are often not an option. Families already under pressure have to spend more time supporting each other, not less. In these circumstances it isn’t surprising that families often find they need to ask for help.
This information looks at the range of help that may be available and how to get it. It refers to parents throughout but anyone caring for a child with autism may find it helpful. If you’re caring for an adult with autism our information sheet community care for adults is for you.
Terms and abbreviations used:
- ASD: we’ve used this abbreviation for autism spectrum disorder. The information contained in this document is relevant to parents of children with autism (both high- and low-functioning), Asperger syndrome, pervasive developmental disorders and a range of diagnoses referring to conditions across the autism spectrum.
- SSD(s): we’ve used this abbreviation for social services department(s). These are the departments within your local authority, which are most likely to be responsible for funding any extra support you need.
Duties of Social Services
Your local authority has a number of duties towards you and your child. Every local authority must protect and promote the welfare of children in need living in the area. They do this in a number of ways, for example by:
- assessing the needs of children in need (including those with a disability)
- assessing the needs of carers
- providing services to meet identified needs
- providing information and signposting to other organisations
- maintaining a register of children with disabilities living in the area
The SSD that carry out these duties is usually called ‘Children’s Services’ or ‘Children and Families Services’. Children with disabilities have rights to an assessment under Section 17 of the Children Act 1989. The local authority then has a duty to provide any services necessary to meet their needs. In theory this means that the local authority could fund virtually anything if it is necessary for the child’s development. In practice disabled children and their families tend to be offered residential and home based respite care but very little else.
Your child may be entitled to an assessment of their needs even if they do not yet have a formal diagnosis of ASD. This is because Section 17 of the Children Act 1989 applies to all ‘children in need’. A child is in need if:
(a) He or she is unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining, a reasonable standard of health or development without the provision for him or her of services by a local authority.
(b) His or her health or development is likely to be significantly impaired, or further impaired, without the provision of services.
(c) He or she is disabled. It is also useful to be aware that “family” includes any person who has parental responsibility for the child and any other person with whom he has been living. In some cases this will not be just the child’s biological parents but also step parents, grandparents or step brothers and sisters.
The Carers (Recognition and Services) Act 1995 and the Carers and Disabled Children Act 2000 require local authorities to assess the needs of carers and where necessary to provide services to meet those needs. If you as a parent request an assessment for your child you should also request a carer’s assessment. To find out more about your rights as a carer, you can read our support for carers information.
What needs do we have?
All children with an ASD are individual and have different needs. Parents needs also vary depending on a range of factors, such as how much money they have, whereabouts they live, how supportive their friends and family are and how many children they have.
It may help to define the kinds of needs you have by keeping a note of which periods during the day cause you the greatest stress. Ideally, as many members of the family as possible should do this. You can use a simple chart such as a tick sheet to record this. By the end of a week it should be very easy to see which times of day cause the greatest stress, or place the greatest demands on you as parents.
What services do I need?
Being clear about what your needs are makes it much easier to identify which services you require. Sometimes it becomes clear that you need a combination of services, such as respite care to give you a break, and behaviour management advice to help you cope better.
The following list shows just some of the sources of support families can use. Not all families have access to all these different types of help.
Help that many families have access to includes:
- extended family
- family friends
- parent support groups
- GPs, health visitors, social workers and other concerned professionals
- counselling services
- babysitters, childminders and nannies
- financial benefits such as disability living allowance (DLA).
Help that requires local authority funding includes:
- home-based respite carers
- family-based short-term respite care – this works a little bit like foster care. A child with a disability is linked with a family which they then go to stay with on a regular basis.
- centre-based short-term care: many local authorities run children’s homes which are dedicated to offering a respite service to families.
- play schemes, after-school activities, summer camps and youth clubs
- residential schools.
What is an assessment?
An assessment allows the SSD to collect information about your child and your family and to identify any needs for support that you may have. The assessment is carried out by a Social Worker who will need to meet with you and your child. The Social Worker will usually visit your house and so you do not have to worry about taking your child to an unfamiliar environment.
To request an assessment it is advisable to write to your local SSD. For many local authorities the first point of contact is a call centre. The person who answers the phone will not necessarily know much about autism and they may not understand the urgency of your situation. A template letter which you can use is provided here. Be sure to delete any statements which do not apply to your child. To make sure that the letter is received by the right person, it may be helpful to take the following steps:
- Phone your local social services office and ask which team deals with requests for Children Act 1989 assessments for children with Asperger syndrome/ASD/autism (depending on your child’s diagnosis). Ask for a postal address of the relevant team and don’t be put off from getting this. If necessary, explain you’re writing a letter about your child’s disability and about his/her need for an assessment and wish to send it to the appropriate team so you need an address.
- If possible, find out the name of the team manager of the team you’re writing to so you can address the letter to him/her, but if this proves too difficult, address the letter to the Team Manager.
- Send the letter, remembering to put a date on it and keep a copy of it (whether a paper photocopy or on your computer).
- Await a response from the team you wrote to, but if you’ve not heard back within a few weeks, phone the team and ask for an update.
- If you haven’t had any success finding out the team responsible, address the letter to the Director of Social Services who will probably not reply to you directly but will pass it on to the right person.
Government guidance on assessing children in need (Working together to Safeguard Children, 2013) states that within one working day of a referral coming in children’s services should decide what response is required. If the decision is to take no action you should be notified promptly and given reasons for this.
The assessment process will require social services to fully evaluate the level of your child’s needs and the help you as parents are able to offer as well as the services your child might need. In some LAs this will be completed through an initial assessment and then a more detailed one if it is needed. In other authorities a single assessment is used. The social worker may liaise with other professionals with whom you have contact to find out more about your child. At the end of this time they should inform you of what services, if any, they are going to provide, and you should be given the opportunity to respond to this. You should also be informed that you are entitled to use the local authority’s complaints procedure if you’re unhappy with the way the assessment has been conducted or the decisions made.
All local authorities use slightly different methods of assessment, so it’s hard to predict exactly what questions they will ask. It’s important that they get as full a picture of your family’s situation as possible.
Common Assessment Framework (CAF)
Some local authorities will carry out CAF. A CAF is an assessment tool that is used to assess the unmet needs of a child. This form can then be shared between professionals involved in the child’s life to better understand the child’s needs and to work out ways to further support them. The CAF is completely voluntary and would be carried out with the involvement of you and your child.
A CAF can only be carried out by someone who has had the appropriate training in completing a CAF such as an early years worker, a youth worker, school staff (such as teachers) or medical staff (such as health visitors). The CAF looks into these three main areas:
- the development of the child
- their parents and carers
- the family and community.
Once the CAF has been completed, you would be given a copy of it and the worker may liaise with other professionals and agencies involved in your child’s life to discuss ways of meeting their needs. This could be by arranging for extra support with school work or access to a short break service.
If multiple teams are to be involved in supporting your family they will work as a team with you. A lead professional will be identified. You will usually be able to have a say regarding who is to be your lead professional. It is a good idea to choose someone who knows your family and you feel comfortable talking to. They will keep you up to date and co-ordinate the team around your family. Meetings to discuss how things are progressing are sometimes called Team around the family or TAF meetings.
The CAF does not take the place of a core or initial assessment. If a CAF has been completed, and it is decided that a referral to Children’s Services should be made, an allocated social worker will still have to carry out a full child in need assessment. However, in some cases, the CAF can reduce the number of assessments that the child and their family have to go through.
What services can be provided?
The range of home based services that a local authority can provide to people with disabilities 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:
Practical assistance in the home
This might mean having someone come round to help with cleaning or cooking. If your child has physical needs, practical assistance could mean helping them to wash, dress or get out and about. It can also mean an extra pair of hands during stressful parts of the day.
Wireless [radio], TV, library etc
This could include the purchase of a computer.
Lectures, games, outings and other recreational/educational facilities
Recreational/educational facilities include places in activity clubs and play schemes. These services must be provided outside the home.
Assistance in travelling to community based care services
The local authority is entitled to charge for transport provision. However, they must ignore the mobility component of DLA (if you get it) when making their assessment.
Other services include:
- home adaptations
- meals (at home or elsewhere)
- a telephone
The Children Act 1989 outlines additional services that are available to children living with their families. These include:
- advice, guidance and counselling
- occupational, social, cultural or recreational activities - this may be a trip to the cinema, bowling or swimming with support of a carer.
- home help (which may include laundry facilities)
- facilities for, or assistance with, travelling to and from home for the purpose of taking advantage of any other service provided under the act or of any similar service
- assistance to allow the child concerned and his family to have a holiday.
Short Breaks (respite)
An amendment to the Children Act 1989 introduced The Breaks for Carers of Disabled Children Regulations 2011 (also known as the Short Break Duty) and these came into force in April 2011. Under this duty local authorities are legally bound to provide a range of short breaks including:
- day-time care in the homes of disabled children or elsewhere
- overnight care in the homes of disabled children or elsewhere
- educational or leisure activities for disabled children outside their homes
- services available to assist carers in the evenings, at weekends and during the school holidays.
Every local authority must now have published a Short Breaks Services Statement and this should outline the types of short break provided by that authority, how to access these and how they have been designed to meet the needs of local carers. You can find your local authority’s statement on their website.
Some short break services are specifically for children with ASD (you will almost certainly need an assessment by children’s services to access these) whilst others are generic services for children with all types of disabilities (these may be provided through a CAF). Whilst it does not always matter whether a service is ASD specific or not, it is important that the people caring for your child understand autism.
The NAS Autism Services Directory contains details of services and support for people with an autism spectrum disorder and their families. You may be interested in using this to look for respite services in your area that have experience of caring for children with ASD.
Sometimes families reach a point where their child’s needs are such that they are unable to care for them in the family home. This may be because of additional health needs or challenging behaviour. Section 20 of the Children Act 1989 says that the local authority has a duty to accommodate children when ‘the person who has been caring for him (is) prevented (whether or not permanently, and for whatever reason) from providing him with suitable accommodation or care’. This may mean placing the child with foster parents, in a care home or as a residential student at school if these facilities are available. When children are accommodated under Section 20 the arrangement is voluntary and the parents retain parental responsibility. This means that they are still in charge of making decisions about the child's welfare and could have the child home at any time if they changed their mind. To keep a child in care without the parent's agreement the local authority need a Court Order and these are only given if the child would be at risk at home.
Social Services departments are allowed to operate eligibility criteria to decide which team will assess a child’s needs. Sometimes children with ASD do not meet the threshold for assessment under the disabled children team's eligibility criteria. In these cases it is a good idea to ask to see the children in need team's eligibility criteria as well. Someone should be assessing your child's needs whether it is the disabled childrens team or the children in need team. If you are told you do not meet either team's eligibility criteria you have the right to complain using your local authority's complaints procedure.
It is also lawful to use eligibility criteria to ensure that services are provided to families in the most need. Often these will be attached to services provided under the Chronically Sick and Disabled Person’s Act. Not every child will be entitled to everything on the list and the local authority can use eligibility criteria to decide which children can access a service. However, they cannot have blanket policies such as ‘we never provide holidays’ or ‘we do not give respite to children under 8 years of age’. Similar statements to these have been challenged in court and found to be unlawful. Local authorities have to consider each individual case and decide whether there is a need for the service.
The Disability Register
All local authorities are obligated to keep a record of every one living in the area who has a disability. You do not have to register your child and not registering them will not effect their entitlement to services. Your child will not be accepted onto the disability register until they have a formal diagnosis. The Disability Register is used by local authorities when they are planning their services. For example children’s services may have some funding to develop a parent support group and consult the register to see which disability is prevalent in the area and would benefit from this funding.
The care plan
Once the assessment has been completed the social worker should draw up a ‘children in need care plan’. This outlines the needs that have come to light through the assessment process and the services that will be offered to your child as a consequence. They will not list services that need to be obtained from other statutory bodies such as the health authority or local education authority although they may make reference to the fact that you will be approaching these departments for further help. Below is an example of how a care plan may look:
|Day and time
||Need to be met
||How need will be met
||Need met by
||Expectation of need being met
|Mon-Fri 7:30- 8:30am
|Helping Ben to get ready for school while Kathy (Ben’s mum) helps her daughter ready and gets herself ready for work.
|Care attendant will support Ben to carry out daily personal tasks and get ready for school.
||Sunshine Care agency
||Ben will learn to carry out tasks in the morning with the 1:1 support he needs. Kathy can then get herself and her daughter ready.
||Helping Ben to de-stimulate after school to prevent him from presenting challenging behaviour towards his mum and sister.
||Support with homework and activities.
||Neighbour who Ben is familiar with and gets on with. Arranged through Direct Payments.
||Ben will have the 1:1 support he needs to de-stimulate after school which will allow Kathy to come home from work and deal with evening tasks including making dinner etc.
|Care package to be reviewed in 8 weeks time by social worker.
|In an emergency contact Children’s Disability Team Duty team on 0897 555 555 [Example].
Local authorities can give parents payments to pay for the services they have been assessed to be in need of by social services. These are called ‘direct payments’ and are available to both adults and children. Direct payments are seen as a very positive move for parents, for many reasons. They can give people the choice to be flexible about when, how and where they receive services, such as respite. In areas where perhaps there is a lack of formal respite services for individuals with autism, a parent can actively seek to employ their own carer and negotiate with them the help they need.
For more information please see our Direct Payments information.
Children with disabilities in receipt of social care services will now be entitled to a personal budget. Under this system families will be told how much social care money is available to them and will then be able to spend this money on support and services to meet their child’s individual needs. Families will be able to choose whether to receive an actual budget and manage their child’s finances through a direct payment, a virtual budget where the money stays with the LA or a mixture of both. For some families who are happy with the services that they currently receive, this will just be a paper exercise and no changes to their support will be needed. For others it gives more choice and control over how to meet their child’s agreed needs.
There are seven steps to getting a personal budget:
- work out how much money your child will get
- make their plan
- get their plan agreed
- organise their money
- organise their support
- live life
- review how their support is working
Charging for services
If your child is under 16 years of age, you may be charged for any services offered to your child. These charges will be means tested so income and savings may be taken into account. They should only assess your income once they have decided which services to offer, so your ability to pay should not influence their decisions about what your child needs.
If your child is 16 years of age or older, their income and savings will be assessed to see if they have to pay a charge for the services provided to them.
Children and young people with special educational needs
Children with special educational needs are entitled to extra help at school. Reforms were introduced through the Children and Families Act 2014 and children with more complex special educational needs may now be entitled to Education Health and Care Plans (EHC plans). These are replacing the old statement system. If your child has a statement and continues to have special educational needs they will eventually move to an EHC plan. These plans will be maintained by the local authority until the young person is 25 if they stay in education. If your child doesn’t have an EHC plan but has eligible social care needs they will be entitled to a regular care plan as described above.
As EHC plans include a social care element there is now a definite overlap in education and social care provision. This should mean that your child or young person has fewer documents and fewer meetings to attend. The following information only applies if your child or young person has SEN and social care needs.
It has been left up to individual local authorities to develop their own protocols to determine how social care assessments will inform or be informed by other assessments including EHC assessments. If your child or young person is already receiving services from social care when they go through an EHC assessment their social worker must be consulted during the assessment process. They must respond to any request for information within 6 weeks of the request being made. If the child or young person is not already receiving services the local authority must decide whether they are entitled to an assessment of their needs under section 17 of the Children Act 1989. Following acceptance of a referral by the local authority children’s social care service, a social worker should lead a multi-agency assessment as described above.
Where an EHC plan is being prepared for a disabled child or young person under the age of 18, any services to be provided under Section 2 of the CSDPA must be included in section H1 of the EHC plan. These services are listed earlier on in this information sheet. All other social care services, including services provided under section 17 of the Children Act but not under section 2 of the CSDPA must be included in Section H2 of the EHC plan. This would include over-night respite stays or residential care. If a young person over the age of 18 has a social care plan, the services that they receive may be recorded here. Services that your child or young person receives from social care that are not related to their disability such as a child protection plan can be included if the local authority decides this will benefit your child. It may be helpful to have all of your child’s support information in one place.
EHC plan reviews should be synchronised with social care plan reviews, and must always meet the needs of the individual child. Again this is another benefit of the integrated approach for children with ASD as it could mean attending fewer reviews.
Everyone has a right to complain if they are not happy with the standard of a care service they receive. Care services may be provided by the NHS or your local social services department.
A complaint to the NHS could be about being refused a referral to a diagnostician by your GP, or being refused assessment by NHS diagnosticians. A complaint to social services could be about not getting a community care assessment or, in your view, the right care services.
If you have been waiting a long time for a service or feel that an incorrect decision has been made about your care, then you can make this known to the NHS or your social services department. The organisation will investigate and attempt to put things right
There are several ways of trying to resolve problems and there is also help available. Here we will tell you a bit about some of the complaints procedures you can use.
Social Services complaints
If you’re happy with the local authority but have a problem with the service you’re receiving…
If you’re receiving a service such as having a home help visit and you’re unhappy with it,you should complain to the person who manages that service as well as to the local authority. If your child is attending a residential service such as a children’s home, then the organisation that runs the home will have a complaints procedure that you’re entitled to see. If you feel your complaint isn’t being listened to, then whoever is responsible for managing your care package from within the local authority should also be informed.
Complaints about your social services department (children’s services)
The complaints procedure for services that children receive from local authorities is a three-stage process. This process is detailed in the Children Act 1989 Representations Procedure (England) Regulations 2006 and the accompanying statutory guidance ‘Getting the best from complaints: social care complaints and representations for children, young people and others’ (Department for Education and Skills, 2006).
Stage 1 is the ‘informal local resolution’ stage. This is where the manager who is responsible for the service you have complained about looks into the complaint and aims to respond to you within ten working days. With some complex complaints, the manager can respond to you within 20 working days.
Occasionally a mediation meeting between you, the manager concerned and the complaints manager is offered. This meeting is an opportunity to talk about the complaint and resolve it in person. However, you do not have to go to the meeting and if you do, you do not have to agree to anything. If you decide to go to the meeting, you can usually take an advocate with you for support. (More about advocates further on).
What if I am not happy with the response to my stage 1 complaint?
Within 20 working days of receiving a stage 1 response, you can write to the complaints manager and ask that the complaint go to the second stage of the process – the ‘formal investigation’ stage. Your complaint will then be investigated in more depth with the involvement of an independent person. This time, you should get a response within 25 working days (or for complex cases, within 65 working days).
What if I am not happy with the response to my stage 2 complaint?
If you are not satisfied with a stage 2 response, you can ask for the complaint go to stage 3 – the ‘review panel’ stage. You must make this request within 20 working days of receiving the stage 2 response.
What happens at stage 3?
At stage 3, the review panel stage, the complaints manager will ask a panel of three independent people to discuss whether the complaint investigation and results were fair. The complaints manager has to do this within 30 working days of receiving your request for a complaint to go to stage 3.
Is there anything else I should know?
Keep copies of all the letters you send to the complaints manager and only ever send copies of important supporting documents. Try not to send the original documents. If you have attempted to resolve an issue through the complaints process but have not had a satisfactory resolution, you have two options – an ombudsman or judicial review.
The Local Government Ombudsman
The Local Government Ombudsman (LGO) deals with complaints about local authorities, eg social services.
The LGO is a free, independent organisation that investigates complaints against local authorities by looking into maladministration that has caused injustice. Maladministration is where the correct procedures and considerations in setting up a service, delivering a service or making decisions have not been kept to. This would have resulted in injustice to the person who needed help. Examples of maladministration include unreasonable delay, unfairness, failure to follow procedure and poor methods of making decisions.
If you are approaching the LGO, your complaint must be made within 12 months of the incident occurring. In most cases, the LGO will only investigate your complaint after you have followed the complaints procedure for adults or children but not had a satisfactory response. If you have already put in a complaint to your social services department but have waited almost 12 months for a reply, you can contact the LGO on the basis of a delayed response.
The LGO has wide investigative powers and can look at all council documents. After the investigation, they can also make policy recommendations and arrange for compensation to be made to the complainant. If a report is written, it has to be made public by the local authority. However, your details remain confidential.
The LGO can only be used if no other complaints method is being used, eg a judicial review.
You can contact an ombudsman by using an application form (ask for a copy from the ombudsman’s office). You should also send copies of any relevant paperwork connected to your complaint.
Judicial review is where the courts apply the law to actions and decisions made by public bodies, and determine whether they are acting lawfully or not. A public body would be acting unlawfully if its decisions are illegal, irrational or unfair. Judicial review is the only way to resolve care-related issues in court.
Judicial review can look into whether the correct procedure has been followed to reach a decision. It can then change a decision if it decides that it was wrong. However, judicial review cannot be used simply to appeal against a decision.
A case appropriate for judicial review has to be brought to court within three months of:
- The event that you are complaining about happening
- A decision being made about your complaint. Therefore, as soon as it is decided that judicial review is the suitable way of resolving an issue, apply for the review through a solicitor.
Does the judicial review process have a cost?
The general rule of legal costs is that the side that loses the claim must pay both their own and the winning side’s costs. The charges will depend on how far the case has progressed.
A ‘letter before action’ from a solicitor can sometimes encourage the public body to put matters right. This could save money and time.
If you are considering judicial review, you may be eligible for legal aid. Legal aid is funding from the Government to help people access the courts and resolve disputes. Legal aid helps with the costs of legal advice and representation. Eligibility will depend on the type of problem, your income and capital (savings, properties etc), and whether there is a possibility of you winning the case.