Caring for a child with autism can be emotionally and physically exhausting.
Parents or caregivers with a child on the autism spectrum often adjust their entire household in order to accommodate his/her needs, and sometimes forget to focus on their own self care (or struggle to make time for themselves).
If you find that round-the-clock care for your special needs child leaves you stressed out with little to no time for yourself and your partner, respite care could be of benefit to your family and your own mental health.
Respite, often referred to as short break, is there to give parents time to recharge their batteries, take a break, regroup, spend more time with the autistic child’s siblings, or concentrate on activities of their choice.
It is important to remember you do not need to reach crisis point to be eligible for, or benefit from respite. Short breaks can in fact help prevent your family from reaching crisis point. It is not surprising to learn that a common feedback from first time respite users is the realisation of just how much the break was needed. Just imagine the difference several hours a week without caring for your autistic child could make for you and your family, or what time away with your partner could do for your relationship.
Short break services vary in different countries, states, and regions. They can last several hours or several days, take place in your own home, or at a dedicated residential facility.
What are the different respite services available?
Some of the different services autism families might wish to make use of include:
- Childminders: You might wish to match your child with a local childminder who has completed training relevant to caring for children with autism or disabilities. Childminders tailor activities to include all of the children’s needs and interests whilst following each child’s level of development. They will also take children out to local groups, activities and places of interest.
- Support Workers: A support worker can provide one-to-one care for a child in the family’s home. They will also take the child out in the local community. Parents can use the time to care for other children, exercise, rest, relax or enjoy any activity of their choice.
- Sitters: A sitter can provide one-to-one care for a child (and sibling) in the family’s home during the evening so the parents can go out. Autism families should ensure they choose someone who is familiar with any additional requirements their child with autism might have.
- Buddies: In the UK, and some other countries, a Buddy service (or programs of a similar name) can be made use of. In the UK, “buddies” are aged 16 + and are paired with an autistic student aged 14-25 years old. They meet on a regular basis and go to the cinema, bowling, out for lunch, go shopping or any specific activity the young person wishes to engage in.
- Day care away from home: You can make use of nurseries, pre-schools, schools and playgroups during term-time, plus out of school and weekend clubs. During school holidays, options might include access to local playschemes.
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What about residential respite care for autism?
Short breaks can be accommodated at your home where the sitter or carer stays with your family overnight to allow you to get a night’s sleep, or for you to go away for the weekend. Alternatively, residential respite care is where the child stays at a residential home, special units in hospitals, or specially adapted sites, which are fully equipped with games and child/teen oriented facilities.
Some regions also offer family link schemes where the child would stay with another family occasionally or on a regular basis to offer their loved ones respite. Some local authorities in the UK offer Universal short breaks which means that they are open for ASD children to access without an assessment.
How to proceed
The first port of call to arrange respite care is to speak with your local council, or contact a charity offering respite services and activities. Local authorities in the UK now have a duty to provide short break services and clearly show families how to access them. Your child’s needs will be assessed by the relevant team who can then recommend the respite care and caregiver best suited to your needs.
Parents should be advised by their local authority on which type of respite care they qualify for. The local authority would also have information about local charities and organisations running day activities.
How much does respite care cost?
Cost options for respite care are best discussed with your local authority as each would have its own charting policy.
As a whole, in the UK, if you qualify for respite care provision you will not need to pay. If a parent does not qualify for free support, the local authority can advise as to respite services that can be paid for independently.
People can also pay independently for respite services with private providers. Various organizations and residential centers provide short-stay overnight care as well as more permanent live-in care. Most centers have flexibility with regards to length of stay – some parents leave children there for several hours, some overnight. Your family’s needs can be discussed with the specific provider.
Respite care for children with autism can have a significant, often life changing impact on families’ lives. Making the most of the various options available is a safe way to help your family function better so you can spend more time with your ASD child’s siblings, and importantly, help stop your family from reaching crisis point.