Social services: getting help for your child (England and Wales)

This section tells you about the range of help that may be available from your local social services department, and how to get it.

Caring for a child with autism 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 are caring for an adult with autism, Community care: a guide for people with ASD and their carers is for you.

Terms and abbreviations

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.

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. An example of the kind of chart you can use is given in Appendix 4. 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.

Case studies

Julie and Josh

Julie's son four-year-old son Josh has autism and doesn't speak yet. He communicates what he wants with noises and body language and is beginning to use picture cards at home and at nursery. Julie identified the following points in the day as causing stress:

Mornings between 6am and 8.30am
Josh wakes early and comes into me straight away. He tends to start making noises if I don't help him get dressed and get him his breakfast right away. After this he needs supervision continually because hes prone to injuries when left alone. He was once rushed to casualty with a serious head injury after falling off a bookshelf he was attempting to climb. When my daughters wake up they'll play with him while I get washed and dressed.

Dinner time at 6pm
Lunch times are fine but when his sisters are around in the evening I can't give Josh my undivided attention. He wanders off frequently, drops food and refuses to eat. The whole experience is stressful not only for Josh but for his sisters as well. I try to give them dinner first and Josh dinner afterwards which means we can't all eat together as a family.

Graham and Marie

Graham's 13-year-old daughter, Marie, has Asperger syndrome. She's doing well at school but experiences high levels of anxiety and has frequent panic attacks during which she needs to be reassured and cared for her by one of her parents. She and her younger sister, Lucy, fight frequently which causes tension at home and the stress of caring for her is putting a strain on Graham's relationship with his wife, Sue. Graham identified the following times when he really had problems coping with Marie's needs:

After school 3:30pm to 5pm
When Marie comes in from school she's normally agitated and excitable. This is when she's most likely to have a panic attack. Marie's sister, Lucy, brings friends home from school often or goes out with friends. Marie and Lucy often fight about this because Marie has few friends and likes to monopolise her sister's time when she can. Marie needs a period of one-to-one attention from either Sue or myself at this time but its hard to ensure she gets this as we both have work commitments. She also has a tendency to play us off against each other, not maliciously, but because experience has taught her this is a good way to get what she wants. This causes friction between me and Sue.

During school holidays
The same issues that arise with her sister after school are also present during the school holidays. Marie also finds the disruption to her routine hard to deal with and finds it hard to entertain herself which leads her to demanding a lot of our attention. Even when we go away Sue and I find it hard to get a break from caring for Marie. We don't often get time to ourselves.

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 most families will have access to:

• 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:

• 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.
• playschemes, after-school activities, summer camps and youth clubs
• residential schools.

Case studies

Julie and Josh

Julie decided on the following things that might help.

• Getting advice from a psychologist in dealing with Josh's behaviour. In particular some strategies to help him deal with his frustration better when he doesn't get exactly what he wants right away.
• Advice from an occupational therapist on helping Josh eat by himself so he doesn't need so much help at dinner time.
• Advice on safety proofing the home so that there are more spaces available where Josh can be left unsupervised.
• Having a carer spend some time with Josh in the evenings so that Julie can spend some uninterrupted time with her daughters so that they don't feel excluded.

Graham and Marie

Graham identified the following services that might help.

• Getting a volunteer befriender for Marie so that she isn't so reliant on her friendship with her sister. The befriender could also spend time with Marie after school or at weekends which would remove some of the friction between Marie and her sister.
• Spending time together with his wife defining some boundaries for Marie so that they are both able to respond consistently to her. If necessary getting advice from a psychologist on behaviour management.
• Suggesting that Marie's sister goes along to a local siblings support group to find out what it is like. 
• Finding a residential camp for Marie to attend for a few days so that Graham and his wife can have a break from her during the summer holidays.

How do I go about getting help?

For contact details of your local parent support group and advice on getting help from health professionals:
Call our Autism Helpline on 0845 070 4004, 10am-4pm, Monday-Friday. Or you can refer to our Autism Services Directory to search for groups in your area: www.autism.org.uk/directory

For advice on financial benefits:
Read through our information on disability living allowance, available on our website (see www.autism.org.uk/a-z) or from the Autism Helpline. You may wish to book a telephone appointment with our welfare rights adviser to discuss financial benefits by telephoning our Autism Helpline on 0845 070 4004. You can also contact your local Citizens Advice Bureau (CAB) for advice on the full range of benefits you're entitled to. Contact details for other helplines are given at the end of this document.

For advice on education:
Contact the NAS Education Rights Service. 

Getting help from social services

This information sheet is going to concentrate on getting help from social services departments (SSDs). The services that SSDs are able to offer include:

• advice on benefits and funding special equipment or recreational activities
• occupational, social and recreational activities
• home help
• respite care
• assistance with travel
• assistance with holidays and out of school provision
• aids, equipment and grants for housing repairs and adaptations.

In most cases they can advise on a range of other services and provide you with appropriate contacts for further help.

Case studies

Julie and Josh

To get the help she felt she needed, Julie initially visited her GP. He made a referral to a local child and family guidance clinic where she could see a psychologist. He also suggested she contact social services. The SSD sent a social worker round to carry out an assessment who agreed that Julie needed some help with caring for Josh particularly after school. They put her in touch with a local sitting service who arranged for a carer to visit once a week in the early evening for a couple of hours. After a month this service was increased to twice weekly.

The social worker also arranged for an occupational therapist to visit to give Julie some advice on feeding issues and also to suggest ways in which to make the home safer. Fortunately, the costs of the home alterations recommended by the occupational therapist were quite low. If they'd been expensive, Julie's social worker could have advised her on how to apply for a grant to meet these costs.

Graham and Marie

Graham initially spoke to other parents at his local parent support group. They suggested that a siblings group might be helpful for his other daughter, Lucy, and gave him details of a local one. They also suggested a local psychologist who Graham should speak to regarding managing Marie's behaviour consistently. Graham got a referral to this psychologist from his GP who also suggested speaking to social services about getting some extra help.

The social worker who came round to see the family promised to look into residential camps and found a list of charities which offered residential camps for children with disabilities and which still had some places for the following summer. One of the camps focused on arts, crafts and drama workshops which Marie thought she would enjoy more than sports or outward bounds courses. This gave Graham and Sue the chance of a break.

I think I need help from social services - what should I do?

The first step is to write to your local SSD, explaining that you have a child with an autism spectrum disorder and asking for an assessment. A model letter which you can use as the template for your own is provided at the end of this information sheet.

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. 

Lastly, 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 carers assessment. To find out more about your rights as a carer, read our Carers rights guide, which is also available from our Autism Helpline.

What will the assessment be like?

Government guidance on assessing children in need (Frameworks for Assessment of Children in Need, 2000) states that within one working day of a referral coming in, it is expected that an SSD should decide what response is required. If the decision is to take no action you should be notified promptly and given reasons for this.

Every local authority has eligibility criteria to determine whether an individual will receive services from the local authority and may use a priority system. The eligibility criteria are likely to be on your local authority's website or you can request a copy directly from them.

If the decision to do something is made, a social worker should contact you to carry out an initial assessment within seven working days. An initial assessment will help the department identify whether or not your child is in need, what services may be needed and whether the case is urgent or not. They will need to see and speak to your child at this stage as well.   

After this they may decide to carry out a core assessment. A core assessment will be much more thorough and will require social services to fully evaluate the level of your childs needs and the help you as parents are able to offer as well as the services your child might need. They may liaise with other professionals with whom you have contact to find out more about your child. The core assessment should be completed within 35 days. 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 authoritys complaints procedure if youre unhappy with the way the assessment has been conducted or the decisions made.

All SSDs 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 familys situation as possible. 

Common Assessment Framework (CAF)

Some local authorities will carry out CAFs. 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.

A CAF can only be carried out 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 is completely voluntary and will be carried out with the involvement of you and your child. The CAF looks into three main areas:

• the development of the child
• their parents and carers
• the family and community.

Once the CAF has been completed, you will 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 identifying that more support is needed in the home and so making a referral to social services.

The CAF does not take the place of a core or initial assessment. Once a CAF has been completed, and a referral to social services has been made, an allocated social worker may 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 will happen next?

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.

Direct payments

In recent years 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. If the person assessed as being in need is under 16, the payments are given to the parents (or whoever is caring for the child). 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 but should offer you a reason for the refusal.

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 people with autism, a parent can actively seek to employ their own carer and negotiate with them the help they need. However, it's important for parents to realise that receiving direct payments entails a number of responsibilities, such as the task of finding the right kind of support they need and taking on the role of employer. Notably the payments can only be used to support the needs assessed by the local authority.

The local authority should supply enough funds to cover the expenses of you employing someone directly. This includes tax and national insurance, and police checks.

Each area will administer and co-ordinate direct payments differently, so contact your local social services for more information.

Our information sheet, Direct payments: a brief guide for parents and carers of children with an ASD, is available from the Autism Helpline on 0845 070 4004.

Will I be charged for the services I receive?

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. The local authority 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.

If you feel the charges are unreasonable or that it's not possible for you (or your child) to pay, then you should find out how the charges were worked out. You could write to the local authority and request to know how the calculations were carried out and a review of the charges.

What should I do if I don't get help from social services?

If you feel unhappy with the way the local authority has acted

If the local authority refuses to assess your child, or you feel that your child's assessment wasn;t adequate or you're not happy with their care plan, then you have a right to complain. All local authorities have a complaints procedure. If you need to complain you should ask your social worker or someone in the SSD to send you a copy of this. All complaints procedures are slightly different, but they all have informal and formal stages. At the informal stage you need to let the authority know what's wrong. You can either speak to someone like your social worker or write to the authority. If you get a copy of your local authority's complaints procedure it will say who you should speak to at this stage. This is known as a Stage 1 complaint. 

At the formal stage you will need to write to someone in a position of responsibility (usually the Director of Social Services) within your local authority who will then arrange for your complaint to be investigated. This is known as a Stage 2 complaint. It's very important when you write to the social SSD, that you ask for the complaint to be registered as a Stage 2 complaint. The authority will then have to investigate the matter within four weeks. 

If the problem isn't resolved after this, you can ask for the complaint to be referred to a review panel (or independent panel in Wales) which can re-examine the decision the local authority made when they investigated your complaint. You'll be invited to attend this review and you can take an advocate or friend along to support you if you want. This is known as Stage 3 or the review stage of the complaints procedure.

You can skip the informal stage if you feel your complaint is serious and needs to be investigated urgently. In particular, if you feel you or your child need help urgently and that this isn't being offered, it may be a good idea to complain formally as soon as you can. If you're concerned about making a complaint you can contact one of the organisations listed at the end of this information sheet for advice. A letter you can copy when making a Stage 2 complaint is provided in Appendix 2 at the end of this information sheet.

Occasionally when a child has both social care needs and health needs, there may be confusion as to who is responsible to meet those needs (ie social services or the NHS). The child and their family may then feel like they are ‘stuck in the middle’ while the two departments decide who should fund what. If you’re in this position, making a complaint may help to speed up this process. You can also complain to the NHS using their complaints procedure. If you need help with a complaint to the NHS then your local Patient Advocacy Liaison Service (PALS) or Community Health Councils (CHCs) in Wales will be able to help. You can find out more about making a complaint to the NHS by reading Complaints - children's NHS procedure, which is also available from our Autism Helpline.

If you want to take things further

If you've been through your local authority's complaints procedure and you're still not happy with the way things have been handled you may be able to complain to the Local Government Ombudsman or Public Services Ombudsman for Wales. The Ombudsman can only deal with cases where maladministration has occurred. For example, if you had to wait a very long time for your SSD to carry out an assessment this could constitute maladministration. The Ombudsman can't deal with your complaint if youre unhappy with the quality of the services you have received.

If you suspect that the local authority may 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.

To find out more about the complaints process, read Complaints and remedies – England, which is also available from our Autism Helpline.

If you are happy with the local authority but have a problem with the service you are 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 the local authority. If your child is attending a residential service such as a childrens home then the organisation that runs the home will have a complaints procedure that youre 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. 

Does the NAS offer a respite care service?

Through our volunteering network we're developing a range of befriending schemes around the country. Specially selected and trained volunteer befrienders are allocated to individual families and can help in the following ways:

• supporting the family during leisure activities
• taking part in recreational and learning activities
• spending time listening and talking to family members
• offering temporary respite
• going on holiday.

You can contact our Autism Helpline to see if there is a befriending scheme in your area, or search for services by using our Autism Services Directory at www.autism.org.uk/directory

All of us can benefit from going on holiday and this is the same for people with people with an ASD and their families. Finding a holiday scheme to meet their needs can be difficult, though. Our guide Holidays: autism-friendly venues lists a number of holiday schemes which accept people with autism. It also provides details of useful organisations, some of which can provide practical or financial assistance to help people with disabilities and their families go on holiday. For a paper copy, please contact our Autism Helpline.

Download template letters of complaint and other appendices here.   

Quick link to this page: www.autism.org.uk/17378