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’re caring for an adult with autism our information community care for adults 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.
- SWD(s): we’ve used this abbreviation for social work 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 Work 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:
- 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 SWD 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 23 of the Children (Scotland) Act 1995. 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 23 of the Children (Scotland) Act 1995 applies to all ‘children in need’. A child is in need if:
- 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 unless there are provided for him or her services by a local authority
- his or her health or development is likely significantly to be impaired, unless such services are so provided
- he or she is disabled
- he or she is affected adversely by the disability of any other person within his or her family.
It is important to note the inclusion of children affected by another person’s disability. This entitles brother and sisters of children with ASD and children with an ASD parent to an assessment.
Section 24 of the Children (Scotland) Act 1995 says that when a local authority undertakes an assessment of the needs of a disabled child, they should also inform any carer who regularly provides a substantial amount of care for the child of their entitlement to an assessment of their ability to continue providing care for the child. This is generally referred to as a carer’s assessment. 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:
- 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.
What is an assessment?
An assessment allows the SWD 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 SWD. 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 and Children (Scotland) Act 1995 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 Work Services who will probably not reply to you directly but will pass it on to the right person.
When you contact children’s services they should decide what response is required. If the decision is to take no action you should be notified promptly and given reasons for this.
If the decision to do something is made, a social worker should contact you to carry out an initial assessment. An initial assessment will help children’s services 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.
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 child’s 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. 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.
Integrated Assessment Framework (IAF)
Some local authorities will carry out IAF. Many Local Authorities in Scotland have signed up to use the Integrated Assessment Framework (IAF) to assess the needs of children who require support from multiple agencies. This is part of the Government’s Getting It Right For Every Child policy. An IAF 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 IAF is completely voluntary and would be carried out with the involvement of you and your child.
The IAF looks into seven main indicators of wellbeing:
- Respected and Responsible
Once the IAF 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. They will keep you up to date and co-ordinate the team around your family.
The IAF does not take the place of a core or initial assessment. If an IAF 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 IAF 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 playschemes. 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.
- 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.
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 25 of the Children (Scotland) Act 1995 says that the LA 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 25 the arrangement is voluntary and the parents retain parental responsibility. This means that they are still in charge of making decisions about 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 LA 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 children’s 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 everyone 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 - do not use this example phone number).
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 details please see our Direct Payments information.