By Manar Matusiak, Living Autism
You might have recently found out that you will be caring for someone with an Autistic Spectrum Disorder, or you might have been caring for someone for many years. Whichever the case, there will be times when you feel overwhelmed, when you do not know which way to turn, when you feel that all you need is a little break. It is important to prepare yourself for those moments by making sure you have a good support system and you know where to go to for helpful information and a listening ear.
In developing your support system it might be helpful to think of the following areas of support:
• Financial
• Professional
• Informational
• Emotional
• Respite
• Therapeutic
Financial
As a carer you might be entitled to a carer’s allowance. Carer’s allowance is a taxable benefit and is paid if a carer fulfils certain criteria, such as being over 16 years of age and looking after someone for over 35 hours per week. It is definitely worth checking if you are eligible for this financial benefit.
Professional
At various times you might need to consult a professional about a specific issue which is concerning you regarding the person you are looking after. The individual might be displaying behaviours you are unused to or which you would like to understand better or you might like to help them develop skills which might help them in their day-to-day living. You might need to consult a GP, a psychologist, or a therapist. At these times, it is important to try to access this support. The professional might be able to give you helpful information and tools which could help the individual and you as their carer.
Informational
Whether you are needing to find out more about autism or wishing to know more around a certain aspect of the condition, it helps to know have an idea of where to go for that information. You might wish to read articles on the subject, meet with others in your situation by going to a local support group, or have an online chat in a discussion forum. It is important to remember that the chances are someone else has come across the same difficulties and you might find it helpful to know how they managed the situation.
Emotional
There will be times when you feel unduly stressed. Remember, you need to look after yourself in order to be able to look after others. You might wish to visit a counsellor or find a stress management course. For you, it might be yoga or relaxation classes. If you cannot get to a class or a course, you might be able to find helpful DVDs or ideas from some relaxation internet sites. Paying attention to your stress levels might help you through some of the difficult times.
Respite and holidays
At times you might feel that stress management or relaxation techniques are not enough for you and that you need a break to recharge or to pay attention to other people or duties you might be neglecting, because of the extent of your care. There are several respite choices or you might wish to take the individual in your care on holiday or even find someone who would take them on holiday for you.
With the above support you might find that you can successfully care for someone with autism and take care of yourself as well. However, some carers might find that their circumstances change so that they can no longer provide the care they provided before. If you find yourself in one of those situations you might wish to consider looking for full residential care or the individual might wish to go into their own home and enjoy a supported living package to help them with their daily living. Both options can provide excellent care, support and independence for the individual with autism.
Legal
The Care Act 2014 aims to support carers. The Act, which came into effect in April 2015 ensures that you, the carer, have the right to have your own needs assessed which will identify the support you need. You can be assessed regardless of the amount of hours you spend supporting the individual, your financial means or the level of need for support.
To obtain an assessment you need to contact your local authority’s adult services and ask for a carer’s assessment. You should receive a list of the questions you will be asked in advance of the assessment so that you have time to prepare your answers and formulate any questions you wish to ask. You will be asked -
• How being a carer impacts on your health and wellbeing
• Your feelings and choices about caring
• Your work, study, training and leisure
• Your wishes, choices and the outcomes you wish to achieve
• Your relationships, social activities and goals
• Your housing situation
• How you plan for emergencies
Although there are national rules, the local council will decide whether you have what the law calls “eligible needs”. You will be considered eligible if it is decided that your caring role impacts significantly on your wellbeing providing the care you provide is necessary.
Once your needs have been identified, a care plan is put in place and you will be offered the support services identified. If you are above the financial threshold you may have to pay for these services. If you are below the financial threshold you can request a direct payment so that you can organise the services yourself.
Until April 2016 the upper capital limit for residential care where the value your home is included will remain at its current level of £23,250.
The lower capital limit for both residential care and community care will remain at £14,250.
It is proposed that from April 2016 these limits will be set at £118,000 (£27,000 if the value of the home is not included) and £17,000 respectively. However, to this date these figures have not been confirmed.
For more information about the Care Act 2014 or a Q & A fact sheet go to:-
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/care-act-faq