How to get respite care for autistic child uk

Support available for children and parents in England

Caring for an autistic child can be difficult. It can be hard work for parents who may have to provide far more help and support 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 autistic brother or sister 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 an autistic child may find it helpful. We also have information about social care for adults.

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. It does 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 Social Services Department (SSD) that carries out these duties is usually called ‘Children’s Services’ or ‘Children and Families Services’. Children aged under 18 with disabilities have a 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. 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 autism. This is because Section 17 of the Children Act 1989 applies to all ‘children in need’. You can find out more about assessment in our guide. 

All autistic children are individual and have different needs. Your needs as a parent will also vary depending on a range of factors, such as how much money you have, whereabouts you live, how supportive your friends and family are and how many children you 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 a parent.

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 use includes:

• extended family
• family friends
• parent support groups
• GPs, health visitors, social workers and other concerned professionals
• advice, guidance and counselling services
• babysitters, childminders and nannies
• financial benefits such as disability living allowance (DLA).

The Chronically Sick and Disabled Persons Act 1970 outlines the range of home based services that a local authority can provide to people with disabilities These services can be made available to both children and adults and include:

Practical assistance in the home
This might mean having someone come to your home 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.

Home devices 
This could include the purchase of a computer, wireless radio or a TV.

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, it must ignore the mobility component of DLA (if you get it) when making its assessment.

Other services include:

• home adaptations
• holidays
• 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 their family to have a holiday.

Short breaks are an invaluable opportunity for disabled children and young people and their families to relax and take a break from their usual caring responsibilities.  The type of short breaks available vary significantly depending on the age of your child and the level of their needs.  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 has a duty to publish 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. Most local authorities publish this information on their website or you can ask children’s services to send you a copy. Some short break services are specifically for autistic children (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 Common Assessment Framework (CAF). You can find out more about this is our assessment guide. While it does not always matter whether a service is autism-specific or not, it is important that the people caring for your child understand autism.

Our Services Directory holds details of services and support. You could use this to look for respite services in your area that have experience of caring for autistic children.

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 distressed 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 you retain parental responsibility. This means that you are still in charge of making decisions about your child's welfare and could have the child home at any time if you change your mind. To keep a child in care without the parent's agreement the local authority needs a Court Order and these are only given if the child would be at risk at home.

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 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.

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 receive support through an Education Health and Care Plan (EHC plan).  An EHC plan is a legal document that sets out a child or young person’s special educational, health and social care needs and identifies the support that will be given to them to meet these needs. 

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 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 six 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 h2 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 h3 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 plans must be reviewed at least once a year and may result in the local authority making changes to the plan or leaving it as it is. 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 autistic children as it could mean attending fewer reviews.

You can read more about EHC plans in our guide.

Respite Care | Autism Speaks

Raising a child or caring for an adult with autism comes with many joys, but there is no doubt it can be challenging and, at times, exhausting. Many parents put aside their own physical and mental health, partners, friends, hobbies and interests to solely focus on their child. Though it is easy to forget, it is important to keep in mind that to take the best possible care of your loved one with autism, you must take care of yourself. This can often mean taking short breaks to go to your own doctor appointments, go out with your spouse or a friend, rest, or do something just for you.

Click here for COVID-19 information and resources. We know that this unprecedented time comes with many challenges and we’re here to help. Please contact our Autism Response Team for additional assistance.

Click here to read Caring for the Caregiver, an excerpt from the Autism Speaks 100 Day Kit for Newly Diagnosed Families.

What is respite care?

Respite care is short-term care for a child or adult that allows the primary caregiver relief. 

According to National Institute of Health, the respite care definition is “short-term relief for primary caregivers. It can be arranged for just an afternoon or for several days or weeks. Care can be provided at home, in a healthcare facility, or at an adult day center.” 

How do I find respite care for autism?

There are a few different avenues of exploration to find respite care for your loved one. The first step is to learn about the types of respite options that may exist in your community such as an in-home or out-of-home model.  In addition, respite services can be available to families through provider agencies with trained staff or through a more informal network of support.  Find more helpful information about respite models as well as a respite locator from the National Respite Network.

The National Respite Network has also put together a helpful guide: 9 Steps to Respite Care for Family Caregivers of Children and Adults with Intellectual and Developmental Disabilities - A Pathway to Get the Break You Deserve.  

Search our Directory for respite care providers near you!

Who pays for respite care or how do I pay for respite care?

If you are unable to afford respite care, there are some funding options you can look into, including your state Developmental Disabilities agency. Care.com has a very helpful article 6 tips for finding funding for respite care costs.

In addition, advocacy work is under way to make respite care more available and affordable to families. The RAISE Family Caregivers Act, signed into law in January 2018, will create a national strategy for supporting caregivers. Respite options for family caregivers will be one piece of the considered strategy and solution.

How do I make sure the provider is right for my family?

When You’re Ready to Interview: Important Information You Need to Know about Your Respite Worker
by Autism Speaks staff member and autism mom Marianne Sullivan

Below are 10 items you will want to discuss with a potential respite worker. Keep in mind when you’re interviewing that the most important step is to observe how the respite worker interacts with the individual with autism and your family. If possible, have the worker spend supervised time with your family member. See how the respite work interacts with your family member with autism, and with other members of your family. Make sure that you feel completely comfortable with the situation. It’s true that it can take a few weeks for respite workers and family members to get to know each other, but don’t let an uncomfortable situation go on and on thinking it will eventually work itself out. We cannot expect every worker to be a match for your family. Sometimes, despite all of your efforts, the worker is not a match. It’s best to move on and find a new respite worker who can provide you with the support you need.

10 items you should discuss with a potential respite worker

1. Previous work experience with an individual with autism
   • A respite worker does not necessarily have to have previous experience with autism in order for them to succeed at their job. Because individuals with autism are so unique, some families prefer the worker to have no previous experience, so they can teach the respite worker the best ways to interact with the individual with autism. Sometimes if workers have past experience, they want to use strategies that worked with another individual but may not be appropriate or effective for your family member.
2. Background Checks
   • Examples include DMV record, insurance, criminal history, other certifications such as CPR, First Aid certification, etc. Today many agencies require background checks for workers. If you are receiving services through an agency, ask them to share with you the information they require for employment. Agencies differ on what they require for background checks.
3. What does the person know about autism?
   • Many workers have misconceptions about what autism is. Often you will hear workers refer to the movie “Rain Man”, but the movie is 22 years old and we know a lot more about autism than we did back then. It might be a good idea to share facts and stories about autism with the potential respite worker.
4. Are they willing and able to attend training sessions?
   • Many community agencies offer free workshops on autism. Agencies providing the respite services may also offer training. This will vary depending on the agency. It is reasonable to pay your respite worker a lower rate for attending training sessions than for providing actual respite services.
5. Safety Issues
   • The issue of safety must be discussed with the worker. Safety issues are highly individualized so it is best to document your concerns. See Autism Safety Project Emergency Contact info. More than anything, the worker needs to demonstrate common sense and good judgment based on your family member’s needs.
6. Behavioral Concerns
   • Behavioral issues such as tantrums, biting, scratching, etc. can be off putting to anyone, so you can expect the worker may have the same reaction. This is an area where the worker will need to be trained by you or a professional. A Behavioral Plan, written by a professional will include an intervention plan. The worker should fully understand their role in managing the specific behaviors of the individual with autism.
7. How will the respite worker support the person in a group setting?
   • You may want a worker to accompany your family member to a social group, or an afterschool program. The worker will need to be taught the best ways to support your family member in a group situation. You may want the worker to delay intervening, and give the individual an opportunity to respond on their own.
8. Do they have concerns about taking this job?
   • It is best to know what the worker’s concerns are up front. As much as you might want the situation to work out, if the worker is open and honest about their concerns, it gives you an opportunity to make a decision about whether or not the relationship is going to be a match.
9. When is the respite worker available?
   • Is their schedule flexible? Let the applicant know exactly what your needs are. It helps if they have some flexibility in their schedule, so you can take a break when you need it the most. For some of us this, may vary week to week.
10. Ask for three work references.
    • Work references should be employment situations, not personal references. You can ask for personal references as well, but you also want to know about their work habits such as dependability, timeliness, conscientiousness, etc.

For more help and resources, contact the Autism Speaks Autism Response Team at 888-288-4762 or [email protected].

UK Child Care Guide

Updated 06/01/2022

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If you live in the UK, this guide to UK child care also includes information on mandatory maternity benefits and benefits on pregnancy and childbirth.

The good news for parents who have moved to the UK is that childcare is easily available and you can choose from a variety of options. Naturally, too many options make it difficult to make a decision, so carefully consider each alternative. Align child care with your work schedule and budget to find the right balance between your professional career and a rewarding parent-child relationship.

Content

1. Your child's needs
2. UK child care: away from home
3. Maternity benefit and mandatory maternity pay
4. Video

Your child's needs