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 they get less attention 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. This information relates to children and young people under the age of 18. If you’re caring for an adult with autism our page community care for adults
is for you.
In the past there have been lots of different pieces of legislation that say how social services should assess children with a disability, who they should assess and who will be eligible for support. All these pieces of legislation have been replaced by the Social Services & Well-being (Wales) Act 2014. This Act just applies in Wales.
In this guide, when we say that social services have a duty to do something or that they are required to do something, this means that the Social Services & Well-being (Wales) Act 2014 (or the guidance/regulations that accompany it) say that they have to do this by law.
You can read the Act, its code of practice and regulations at http://www.ccwales.org.uk/the-act/
. The code of practice is the most user-friendly document and is broken into separate documents relating to different parts of the Act.
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, 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'. From 6th April 2014 children with disabilities have rights to an assessment under the Social Services and Well-being (Wales) Act 2014. This replaces the right 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.
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 the Social Services and Well-being (Wales) Act 2014 applies to any child where it appears to the authority that the child may have needs for care and support in addition to, or instead of, the care and support provided by the child’s family.
The Social Services and Well-being (Wales) Act 2014 also replaces The Carers (Recognition and Services) Act 1995 and the Carers and Disabled Children Act 2000 and requires 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:
parent support groups
GPs, health visitors, social workers and other concerned professionals
babysitters, childminders and nannies
- financial benefits such as disability living allowance (DLA).
Help that requires local authority funding includes:
- home-based respite carers
centre-based short-term care: many local authorities run residential services which are dedicated to offering a respite service to families
- play schemes, after-school activities, summer camps and youth clubs
How to request 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, so you do not have to worry about taking your child to an unfamiliar environment. They must see your child in order to assess their needs but they may not need to be present for the whole assessment.
Under the new legislation your local authority must have an information, advice and assistance service and it will usually be this service that you contact to request an assessment. The service is likely to work like 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.
You can also write to request an assessment, a Google search will usually produce a postal address for your local SSD. The NAS has a model letter available which you can use as a template. Make sure you keep a copy of any letters or emails exchanged between you and your local authority in a safe place. If you have any problems, the correspondence will make it easier to sort them out.
Some local authorities may have an online form that you can complete to request a needs assessment.
Assessments for children must be completed within 42 working days from when the referral was made. If you, or someone on your behalf such as your child’s school, has made a request for an assessment and you haven’t had a reply from social services within four to six weeks then you should contact them to find out what is happening.
If your situation is urgent and your child is at risk or neglect or abuse then care and support can be provided without the need for an assessment.
What the assessment will cover and how it will be carried out
Government guidance on assessing states that the assessment should be proportionate to your child’s needs. Under the Act your child will have received an assessment if you contact your local authority and are signposted to preventative or community-based services. Not every child will need a full in-depth assessment.
However assessment should take account of three domains:
the child’s developmental needs;
- the parents' or caregivers' capacities to respond appropriately;
the wider family and environmental factors.
These are explained in more detail in the Code of Practice (annex 2): government publications
All local authorities use slightly different methods of assessment, so it’s hard to predict exactly what questions they will ask.
However, the Act introduces 5 key elements that must be considered during an assessment. This requires a local authority to:
assess and have regard to your family’s circumstances;
- have regard to your child’s personal outcomes (see below);
- assess and have regard to any barriers to achieving those outcomes;
- assess and have regard to any risks to your child or to other persons if those outcomes are not achieved;
- and assess and have regard to your child’s strengths and capabilities.
The Welsh Government has issued a well-being statement for people who need care and support and carers who need support. There is a guide aimed at children and young people
. Social services must focus on your child’s well-being when carrying out their assessment of their needs and making decisions, in particular when thinking about the things they want to be able to achieve (their personal outcomes).
They particularly need to consider the following:
physical and mental health and emotional well-being
physical, intellectual, emotional, social and behavioural development
protection from abuse and neglect;
education, training and recreation;
domestic, family and personal relationships;
contribution made to society;
securing rights and entitlements
- social and economic well-being;
suitability of living accommodation.
Determining eligibility and how social services work this out
The 'needs assessment' will determine what support your child or young person needs. Having an assessment of needs does not mean they will automatically receive support.
An assessment will conclude with one of the following:
there are no needs to be met;
- a more comprehensive assessment is required, which may include more specialist assessments;
- needs can be met through the provision of information, advice or assistance;
- needs can be met through the provision of preventative services;
- needs can be met, wholly or in part, by the child themselves or their parent or any other person playing a parental role (with or without the assistance of others);
- other matters can contribute to the achievement of the personal outcomes, or otherwise meet the needs;
- needs can only be met through a care and support plan, or a support plan (an eligible need).
- the local authority considers it necessary to meet the needs in order to protect the child from abuse, neglect or other harm or a risk of abuse or neglect or other harm.
Social services use eligibility criteria from the Social Services & Well-being (Wales) Act 2014 to work out who they will give care and support to. For the first time an eligibility level that is the same across Wales has been introduced. This means that if your child or young person has a certain level of needs they will be eligible for support no matter which local authority in Wales you live in.
Summary of eligibility criteria
To be eligible for support from social services the following must be the case:
(i) the need arises from the child’s physical or mental ill-health, age, disability, dependence on alcohol or drugs, or other similar circumstances; or
(ii) the need is one that if unmet is likely to have an adverse effect on the child’s development;
2. The need relates to a set of standard tasks (regs 3, 4 and 5):
(i) ability to carry out self-care or domestic routines; (see below for definition of ‘self-care’)
(ii) ability to communicate;
(iii) protection from abuse or neglect;
(iv) involvement in work, education, learning or in leisure activities;
(v) maintenance or development of family or other significant personal relationships;
(vi) development and maintenance of social relationships and involvement in the community; or
(vii) achieving developmental goals;
'self-care' is defined as 'tasks that a person carries out as part of daily life including'
(i) eating and drinking;
(ii) maintaining personal hygiene;
(iii) getting up and getting dressed;
(iv) moving around the home;
(v) preparing meals;
(vi) keeping the home clean, safe and hygienic
3. The need is one that neither the child, the child’s parents nor other persons in a parental
role are able to meet, either—
(i) alone or together,
(ii) with the care and support of others who are willing to provide that care and support, or
(iii) with the assistance of services in the community to which the child, the parents or other persons in a parental role have access
4. He/she is unlikely to achieve one or more of the personal outcomes unless the local authority provides or arranges care and support to meet the need. This can include providing a Direct Payment.
Your child’s personal outcomes will relate to the standard tasks above and the well-being statement, the LA will not have a duty to meet needs that are related to activities that they cannot support such as access to health care, housing or education.
The code of practice specifically states that you do not have to prove that your child’s outcomes cannot be achieved through services in the community before they are found eligible for support.
An example of this may be when it is suggested that your child or young person’s need for social opportunities could be met through a local youth group. You do not have to force your child to attend to prove that it would be too stressful for them to access this service.
What happens if my child is not eligible?
If your child or young person’s needs do not meet the eligibility criteria, you will not receive care and support services.
Social services have a duty to write to you and let you know if the outcome of your child’s needs assessment is that you aren’t eligible for services and explain why.
If the outcome of the needs assessment is that they aren’t eligible for ongoing support you should be told how to access preventative support services, such as befriending or social groups. You may be referred to the information, advice and assistance service or you may be referred directly to a community-based service. If your child or young person is not eligible for ongoing care and support from social services and are not clearly signposted, you should ask about this. The LA must record how their presenting needs will be met by preventative and community based services.
If social services assess that your child or young person is not eligible for care and support services you have the right to put in a formal complaint. In this complaint you can state why you feel that their needs meet the eligibility criteria. You may wish to use the eligibility criteria listed above in the section ‘summary of eligibility criteria’ to state what their needs are and why their personal outcomes can only be achieved with the support from the local authority.
The support plan
If your child or young person is found to be eligible for services, social services should develop a care and support plan (sometimes just called a care plan) with you. You must be assigned a named individual who will co-ordinate the preparation, completion, review, delivery and revision of the plan. This may be the same person who completed the assessment.
The support plan must include the following information:
- the outcomes which have been identified
the actions to be taken by the local authority and other persons to help your child achieve those outcomes
- the needs that will be met through the delivery of care and support
- how progress towards achieving those outcomes will be monitored and measured
- the date of the next review of the care plan.
If it is appropriate the plan should also set out:
the roles and responsibilities of your child, their carers and family members, and practitioners
the resources (including financial resources) required from each person.
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
. If you are receiving direct payments to meet any of your child or young person’s needs the plan must also include:
the needs which are to be met by direct payments; and
the amount of the direct payments and how often they will be paid.
What services can be provided?
Each child or young person’s needs are different so the support that is available to them will differ. Services could include the following if your child or young person has eligible needs:
a) accommodation in a care home, children’s home or in premises of some other type (including a residential school);
b) care and support at home or in the community;
c) services, goods and facilities;
d) information and advice.
e) counselling and advocacy;
f) social work;
g) payments (including direct payments);
h) aids and adaptations;
i) occupational therapy.
For any of the above to be put in place the child or young person must have been assessed as having an eligible need for the service.
How soon can I expect services to be provided?
When the needs assessment has been completed you should ask your social worker or community care officer how soon the services your child or young person needs will be provided. If they have been assessed as needing a service then the local authority is legally bound to provide this. Sometimes you may have to wait a short time for services to become available.
Short Breaks (respite) and accommodation
Respite services will usually be provided to meet an eligible need and included in your child’s care and support plan. Not all children will be entitled to specialist respite care and some children’s needs may be met through mainstream services such as after-school clubs, preventative services run by charities or community-based services. If your child is not eligible for respite care provided through a care and support plan but you have said you need a break you should be signposted to services that will meet that need.
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. Under section 76(1)(c) of the Act, a local authority may provide accommodation for a child whose parent is ‘prevented (whether or not permanently, and for whatever reason) from providing the child 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 this part of the Act 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.
Sometimes respite care will be provided under section 76. This could be if it is arranged in an emergency.
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.
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 affect 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.
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.
Social services have a duty to review the care and support plan and the services that are being offered at least once every six months to make sure that the plan still meet your child or young person’s needs and that their needs haven’t changed. This is sometimes called a review meeting.
They should also review if significant changes take place or if the plan is no longer meeting your child or young person’s needs. If you ask for their care and support plan to be reviewed, social services should agree as long as the request is reasonable. An example of the request not being reasonable would be if you had very recently had your care and support plan reviewed and your support needs have not changed since then.
Social services are not allowed to use the review with an aim to reducing support for no reason or to save money.
For information and advice about community care please contact the NAS community care advice service.