Taking a break looks different to each individual and what works for some doesn’t work for others. But as we know, being able to have a break is vitally important.
Finding a way to go from this …
to this …
is not always easy.
For full-time carers, the role of looking after a family member can often be extremely physically and mentally challenging. Add to that the emotional effects and social isolation that can come with the role, it can be a very demanding, no matter how much we enjoy our loved ones. Taking a break can help the family look after their wellbeing and refresh them to provide better care for their family member.
Carers of people with differing needs often have the added complication of how to make “taking a break” happen (with the diverse necessities of their family member). This can take some extra organising, the utilisation of services and individuals to make it happen.
Having a break can be inside or outside the home depending on what is available and what works for the carer. There are many ways to get a break to refresh yourself, although sometimes it requires thinking outside the box.
“My neighbour comes over to our home after my daughter goes to bed once a week. She knits and watches TV while I go to a night class for a couple of hours. I pay her with the carer support contribution.”
Websites such as Carers New Zealand have some great ideas about respite and wellbeing, ideas from bite sized breaks to sitting on a tropical beach, and guidance on ways to achieve it. Manawanui has real-life stories from families sharing their journey about ways to get a break that works for them.
“We use carer support and our eldest daughter comes and ‘hangs out’ with her brother every second Sunday for the afternoon. I either garden or read a book or whatever I feel like doing. If our son has any medical emergencies during the afternoon I’m there if needed but I still get to do my own thing around the home. Seeing that day circled on the calendar often helps me get through a hard week.”
As always, the first thought is funding, what is available and how to get it?
Funding for taking a break, known as respite, is provided by the Ministry of Health (MOH) and gained through your local Needs Assessment and Service Coordination (NASC). Personal budgets are available in some regions within New Zealand. The amount of funding is worked out on an individual basis and is determined via a needs assessment. The NASC for your region can be found on the MOH website. In the Mid-Central region the NASC has been replaced by Mana Whaikaha and individual’s desires are worked through with the Enabling Good Lives Principles and Approach. In the Waikato region, you have the choice of connecting with the NASC, or directly with Enabling Good Lives Waikato.
Below are the types of Respite funds that may be available (currently) in your area through your NASC and personal budgets.
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1. Carer Support
Carer Support is a more relaxed/informal form of respite. You find the carer and the subsidy is claimed through a form stating your total days allocated. The form is filled out as it is used to provide a payment to the support carer. Carer support provides reimbursement of some of the costs for looking after the person while the carer has time to themselves. The form and individual allocation is gained through the NASC. A support carer is often a person that the family/whānau/person already knows before the care begins. There is no formal agreement or specifications but care is on a more informal basis. Some examples of ways to use carer support can be:
- Asking friends and family.
- Utilising a teacher aide.
- Asking a person in the community.
- Using the funds for a school holiday programme or activity.
This could be regular, for example, two hours every second Tuesday while you attend a course or for the support carer to take the disabled person to their activities for you. It can also be irregular such as going to see your favourite band playing or going fishing with a mate. Carer support respite can take place wherever it works for whānau – in your home, in another person’s home or in the community. It may be during the day (ie. for an hour), on the weekend, an overnight break or for a luxurious week in the sun. Carer Support has flexibility but it does have some criteria that it cannot be used for (ie. to go to work). Details can be obtained from your NASC or through the Ministry of Health.
“When my daughter was school aged she went a day a week in the school holidays to a programme set up by a local lady. The children spent from 9am-3pm there in a school hall, supported by university students home for the holidays, to take part in the activities set up for that day. Each day was ‘paid for’ with one day allocation on the carer support form.”
2. Individualised Funding (IF)
Individualised Funding (IF) respite can be serviced through a host provider who invoices the Ministry of Health from the individuals ‘pot of money’ allocated by the NASC. The service supports the family member and/or carer through the various options, such as; wages, guidance for pay rates, providing employment contracts and connecting you with support workers. The disabled person/family member has the control and makes the choices for managing the support within the parameters of the allocated funds. You have flexibility around options such as how to use the hours, what you would like to pay the support worker and who you would like to employ. IF respite can be used for situations including in-home respite, host-family respite, facility respite and non-facility respite for planned or emergency respite care.
“We use IF respite funding for our daughter. Her support carer comes 2 days a week for 2 hours during the school term. The funds pay the support person an hourly wage and any expenses to support the respite. The support person takes my daughter to craft class. The cost of the class, and the petrol to go to it, is claimed as an expense. We also went skiing as a family last year and the funds paid for my daughter’s equipment hire and for private ski lessons so we could enjoy the high slopes while our daughter had her lessons.” “I started using IF respite this year. I was overwhelmed at first with all the paperwork, employing and how to do the wages etc. The service team helped me through the paperwork to sign up and to ‘hire’ our support worker and I opted for the payroll option so for a small fee to the service all the tax , ACC etc is sorted out for me. It takes me about 5-10 minutes a fortnight to put in our workers timesheets, and support for any questions is only a phone call or email away. Easy!!”
3. Family whānau home support
This is where a support worker or ‘buddy’ supports the disabled person by assisting them in the home or in the community. The support can also be before or after school, or for school holiday programmes. The support person is paid an hourly rate.
4. Facility based respite
This is a formal respite where the family member goes to a house or facility set up and staffed for overnight stays. The NASC will tell you the providers that have vacancies.
“When I first enquired about our local respite facility I was really apprehensive. I was exhausted, mentally and physically and had no family to call on to help us for a night respite. I rang and spoke to the manager but felt guilty for even considering putting my little girl in a facility. It felt unnatural. A few months later I rang again and still felt horrible about it. When I rang a third time the manager laughed and said “just come and have a look, no pressure”. We went and had a look and my daughter sat there giggling, smiling and interacting with everyone. So we tried it out for a couple of afternoons, then a night. She loved it. She is now 9 years old and has been going to respite for 3 years. She is always so excited to go, gives me the look to leave as soon as we arrive there and is still smiling when I pick her up. Respite is her place; it’s about her and only her, not the rest of the family. We feel so lucky to have it available as going there is so special for her.” “I wanted to still use our carer support days for family but liked the idea of a facility based respite for our daughter. Our NASC moved some of the carer support over to facility based care so now we have a bit of both which suits our needs perfectly”
5. Host-family respite
Host-family respite is when a second family provides care for the disabled person in their home, caring for the person informally in a familiar environment where knowledge and trust can grow. The disabled person essentially takes a place as an extended member of the household. Payment may be provided via carer support or through a Ministry of Health contracted provider. Contact your local NASC to enquire into this.
To find out what services offer respite in your area go to:
Ministry of Health – respite supports and services Firstport – support services (respite)
Other useful websites that cover respite include:
Transforming Respite: Disability Support Services Respite Strategy 2017 to 2022 A Guide for Carers
