Disabled people can have control over their lives and the choices they make and families have an important role in supporting them to do that. The family’s attitudes and expectations have a critical influence over a disabled person’s level of independence and the extent to which they are involved in decisions about their lives.
For localised information please contact your nearest Disability Information Centre.
The effects of having a disabled family member can be wide-reaching. There are many positive benefits of supporting the person to face challenges and overcome barriers and obstacles. Some people are born with impairments and others acquire them at some stage during their life. Having good whānau support contributes greatly to the disabled person having a good life.
Physical disability is often easier to diagnose than intellectual or developmental disability. This is because physical impairments are usually visible and healthcare professionals can see something is unusual and begin testing and diagnosing early. Some impairments take longer to diagnose and whanau can be left feeling unsupported despite knowing they and their child need help. Many learning disabilities only become obvious when children are not achieving the usual milestones such as walking and talking. For others it isn’t until they get to school and have difficulty with learning that investigations begin.
If you are concerned that your child is having difficulty speaking, hearing, moving about or with their behaviour they may need some help to reach their full potential. The Ministry of Education provides a free early intervention service. Learn more here It is a good idea to engage with the service to ensure supports are in place for later years.
If you are concerned that your child may have Autism you can find a very useful diagnosis guide on the Autism NZ site
Intellectual disability may be diagnosed during pregnancy, at birth, in the early childhood years or later. IHC have some good advice for those who are new to intellectual disability here.
Some people have more than one impairment, or may have serious health conditions as well as a disability. Complex Care Group can help families who are feeling overwhelmed after diagnosis. Find out more
Parenting a child with a special need, whether a physical disability, a learning delay, an emotional challenge, or a developmental disorder, may require the acquisition of specific skills, such as caregiving or advocacy (beyond the usual required by most parents) and demand a commitment of time and energy that can jeopardize careers, marriages, and connections with other children. While every child’s particular need may be different, the experts’ advice for parents is the same: Do not let your own physical and mental well-being decline. In 2020 Complex Care Group and the NZ Federation of Disability Information Centres collaborated on producing the Voices Report. This shows very clearly the impact of feeling unsupported when caring for a disabled loved one. You can find the Voices Report here
It can be difficult to maintain relationships with friends and family who may not understand your needs, or the needs of your child. If you can find even one person who you can talk to about your concerns, worries, fears it will help. If you don’t have anyone then reach out to support groups, many meet via videoconferencing so if it is too hard for you to go out you can still share with others who are experiencing the same, or similar concerns. Peer support is the best you can get. Check with your local Disability Information Centre for groups in your area.
If you feel like everything is getting on top of you and you can’t cope, talk to your doctor. If it becomes urgent then call Lifeline on 0800 543 345 available 24 hours a day, 7 days a week.
Getting a break, or ‘Respite’ is important for families raising a child with a disability and helps to build resilience so families can continue in their caring supportive role. Talk to your Needs Assessment Service Coordination (NASC) agency if you feel you would benefit from Respite for your disabled child – they will assess if you are eligible and if so, may fund some access to Respite.
Building connection in your family and whānau is important for all children. In any family each sibling, as well as the relationship between siblings, is unique and meaningful. For siblings of disabled children this relationship can at times be challenging depending on the differing needs of your children, the complexity of the disability, and the types of support needed by your disabled child such as finances, time, attention, or limits on activities.
Children develop their understanding of their sibling’s disability and needs over time. They will probably have the longest family relationship with the disabled person and it will evolve and develop over years. Looking after sibling’s physical and mental health is vital.
Care Matters have produced a good resource for parents which gives ideas and helpful information on ensuring siblings of disabled children feel valued and loved.
Parent to Parent have an excellent Sib Support service.
Or contact your local Disability Information Centre.
Providing care to a loved one can be demanding and tiring. It is important to use whatever support is available to give you some time for yourself.
Getting a break, or ‘Respite’ is important for families raising a child with a disability and helps to build resilience so families can continue in their caring supportive role. Talk to your Needs Assessment Service Coordination (NASC) agency if you feel you would benefit from Respite for your disabled child – they will assess if you are eligible and if so, may fund some access to Respite.
The principle of Carer Support is to provide full time Carers with time to themselves as a break from their full time Carer role. Carer Support is a subsidy that helps you take some time out for yourself. It provides reimbursement of some of the costs of care and support for a disabled person while you have a break. Once assessed, your Carer Support allocation will be given to you as a number of days. The amount of days you are given are assessed by a Needs Assessment Service Co-ordination service. (NASC). Carer Support is a type of Respite.
You can find out more about this Carer Support at Whaikaha.
‘Respite’ is taking a break for a few hours, a day, overnight or longer, from your caring responsibilities. It can feel hard to take a break from caring, but taking time out for you can help you feel rested and re-energised.
There are Respite services available and they are very much in demand. This includes Facility Based Respite where the child stays overnight in a Respite home with two or three other disabled children and support staff. To access Respite you need an assessment from a Needs Assessment Service Co-ordination service. (NASC)
You can find out more about Respite and what services are available in your area here.
Often the best way to take a break and have some time to do things you enjoy is to gather a network of family and friends who provide care to your loved one in your absence. The advantages of this are that they are already known to the disabled person and yourself, and can often be available if something suddenly happens to you. These friends and family often value being able to help. It may be just for a few hours but it does give you a break and also gives you a pool of people who know what is needed in an emergency.
For other local options contact your local Disability Information Centre.
There are a myriad of services available to inform, advise, support and assist whānau caring for disabled people. Many are disability specific and there are some that are there to support families.
Complex Care Group is a support and information network for a special group of carers, run by carers, who look after young people with complex needs.
While largely focused on providing up-to-date information and support to carers to help them navigate the many challenges they face, they are also responsible for communicating to Ministry of Health, funders and other providers, the needs of this group.
From connecting parents and supporting siblings to providing information on thousands of conditions, we are here to help you navigate your family’s experiences with disability.
Often having a disabled or neurodiverse family member is an experience that isn’t planned, and we know it can be a challenging journey. We can inform, educate, inspire and support you as you navigate your way through your family’s experience with disability. Our services are free and confidential.
Carers NZ is a national not for profit supporting a network of approximately 490,000 individual carers and supporting organisations. We do not charge a membership fee and fundraise to share our support resources freely with family carers.
The primary role of Carers NZ is to ensure awareness about carers, their role, and their needs within New Zealand and internationally. We participate in government reference and working groups, and promote the interests of family carers to decision-makers in health, education, employment, social services, housing, transport, and other important areas.
For a full list of services available go to Whaikaha
Contact the Disability Information Centre in your area for information on local options for services to help you.
