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.
Here we look 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.
- 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 Health and Social Care Trust (HSCT) have a number of duties towards you and your child. Every HSCT 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 department 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 Article 18 of the Children (NI) Order 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 Article 18 of the Children (NI) Order 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 without the provision of him of services by an HSS Trust.
- His or her health or development is likely to be significantly impaired, or further impaired, without the provision for him of such services.
- 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 and Direct Payment Act (NI) 2002 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 the ‘Carers Rights’ information sheet from the Community Care Service.
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:
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 HSCT 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
What is an assessment?
An assessment allows the HSCT 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 HSCT. For many HSCTs 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 (NI) Order 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 Services who will probably not reply to you directly but will pass it on to the right person.
Although it is not statutory guidance, meaning it does not have to be followed, most HSCTs will use the Understanding the Needs of Children in Northern Ireland (UNOCINI) Framework to complete their assessments. Upon receiving a referral 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.
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 pathway 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.
In Northern Ireland there is no set timescale to follow during the assessment process. All trusts 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.
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 (NI) Act 1978. 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 (NI) Order 1995 outlines additional services that are available to children living with their families. The range and level of services are left to individual Trusts discretion but generally include:
- day care for pre-school children
- holiday and out of school care for school – age children
- services for disabled children
- advice, guidance and counselling
Short breaks (respite)
Respite care can be provided to children with ASD and their families if it is identified as a need by your HSCT. Some short break services are specifically for children with ASD whilst others are generic services for children with all types of disabilities. 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 (www.autism.org.uk/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. Article 21 of the Children (NI) Order 1995 says that the HSCT have a duty to accommodate children when ‘the person who has been caring for him (is) prevented (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 Article 21 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 HSCT need a Court Order and these are only given if the child would be at risk at home.
Health and Social Care Trusts 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 trust'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 trust 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. Health and Social Care Trusts have to consider each individual case and decide whether there is a need for the service.
The Disability Register
All HSCTs 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 HSCT 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 UNOCINI Family Support Plan
Once the assessment has been completed the social worker should draw up a ‘UNOCINI family support plan’. In Northern Ireland there is no legal requirement for your HSCT to provide a written copy of this but guidance states that a written copy should be provided if it is requested. We would suggest always asking for a written copy. The plan, also referred to as a care plan, 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 detail please see our information on Direct Payments.
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.
Changes in children’s services
The NI Government has committed to improving outcomes for children. You may be interested to read Our Children and Young People - Our Pledge - a ten year strategy for children and young people in Northern Ireland 2006-2016 (The Office of the First Minister and Deputy First Minister) to find out more about changes that may take place.
For advice and information about children’s services or any other community care issues please contact The National Autistic Society Community Care Service