Advice and information for those caring for a disabled family/whānau member
The intent of this document is to provide you with information about key services and tips from other families/whānau to assist you with navigating the various stages and transitions that occur during the early years. This is part one of four resources (The Early Years, The Middle Years, Adulthood and Getting Older).
A Time of Change
The disability support system is going through a time of major change. This resource relates to how things are at the moment. It is important to note some systems may differ, now or in the near future, in the following regions: MidCentral, Waikato and Christchurch. At some point this system change will occur in all regions throughout New Zealand.
Care Matters support the Enabling Good Lives (EGL) vision and principles that are the foundation for the current system transformation. One of the EGL principles is ‘mainstream first’. Care Matters promotes families being able to successfully access all universal supports and services. Another EGL principle is ‘self-determination’. Care Matters also supports the right for families to have full information so they can make informed choices regarding all options – including specialist supports and services.
The early years can be a rewarding and challenging time for new parents. This resource includes some of the supports, services, personal tips and links to other resources that families have found helpful.
To assist you to help your child get a ‘good start to life’:
connect with other like-minded positive people
build strong relationships and support around you (these can be friends, family/whānau or professionals)
find people who can give you advice that specifically relates to your child (now and as they grow)
remember to look after yourself and take a break when needed, and
take one step at a time.
Who can help my child have a good start to life?
If you have concerns about your preschool age child’s learning and development, you can talk to a:
doctor or a paediatrician The best way to find a doctor is to ask around for recommendations or look in your local white pages. Your doctor will be able to refer you to a paediatrician; this is publicly funded through the hospital if you are a New Zealand resident.
Plunket nurseor call PlunketLine on 0800 933 922 Plunket Nurses provide support to parents on childcare and parenting and regularly assess the health and development of children from birth up to the age of five.
Well Child/Tamariki Ora service Well Child/Tamariki Ora is a free service provided by the Ministry of Health for all New Zealand children from birth to five years. Well Child can support you to protect and improve your child’s health, so they can grow and develop to their full potential.
iwi health provider, or
trained registered nurse for free advice by calling Healthline on 0800 611 116 (operates 24/7).
The DHB Child Development Service provides specialist intervention and management services, such as:
speech and language therapists
mental health services, etc.
Needs Assessment and Service Coordination services (NASCs) operate throughout the country. NASCs are typically the first step for a person to get government-funded disability support services. The type of support provided might include help with personal support, meals, household management, carer support, day programmes, and the support provided by rest homes and private hospitals.
A Needs Assessor meets with a person (and their support people) to carry out a needs assessment. The purpose of the needs assessment is “to decide what is needed to maximise a person’s independence so that they can participate as fully as possible in society, in accordance with their abilities, resources, culture and goals” (NASC Service Description). Options for support are discussed and agreed by all involved.
Then a Service Coordinator works with the person to plan and review “the package of services required to meet the prioritised assessed needs and goals of the person” (NASC Service Description). This means looking at a range of options for meeting a person’s needs, including helping them to access government-funded services and/or other services that may be useful.
Sometimes things might not be possible (for lots of different reasons), no matter how hard you try or want it.
The early years can be a particularly difficult time for carers/family/whānau, as you adjust to the ‘diagnosis’ and all the changes this means to family life. It can be helpful to write your feelings down or talk with others.
Allow time to feel – this may include feelings of grief, anger, blame, guilt, anguish or relief.
Speech language therapists can help with feeding as well as communication and language.
The Early Intervention Service through the District Health Board is from 0 – 16 years. This differs from the Early Intervention Service provided by the Ministry of Education (0 – 5 years).
Do not believe everything you hear or read (sometimes information is out-dated or does not fit your child).
The diagnosis does not change your family member.
There can be advantages and disadvantages in having a ‘diagnosis’. On the one hand it can assist you with getting the help you need, on the other hand it may not adequately describe your child or limit the thinking around your child and his or her options.
Link to groups that may help.
Surround yourself with positive people.
Who can I contact who will understand my journey?
There are a number of different organisations that can support you. Listed below are some of the national organisations. For other services, refer below to ‘Where do I go to find other disability support agencies or information?
IHC, through IDEA Services, supports adults of all ages with intellectual disabilities to live in their own homes and be part of their local communities. IHC also provides an advocacy service for people with an intellectual disability and has produced the Advocacy Toolkit which contains a wealth of information (which is useful even if your child does not have an intellectual disability).
Provides a freephone service and 11 regional offices for nationwide information and support, including connecting parents to other trained support parents.
What about equipment or modifications?
The Ministry of Health can provide equipment and modifications to your home or vehicle to help with everyday activities. You can contact them direct (see below) or get a referral from a doctor, the DHB or NASC service for Equipment and Modifications Services (EMS).
The EMS will provide a qualified housing assessor to help you work out what modifications are the most cost-effective option and what funding might be available. The EMS assessor will work with you until the agreed modifications are completed and paid for.
For more information about modifications you can contact Accessable (if you live in Auckland or Northland) on:
The DHB Occupational Therapist will also be able to assist you with equipment and referrals to other services.
You can get 24 meters of fencing through Equipment and Modification Services (to be eligible you need to have a Community Services Card).
TalkLink operates throughout New Zealand and provides access to assistive technology services. TalkLink works with people of all ages who, due to a disability, have difficulties with speaking, writing, learning and/or with controlling their environment.
What about toileting, sleeping and eating?
Your doctor, paediatrician or occupational therapist can provide you with a referral to the District Health Board Continence Clinic. You can get free nappies from age 4 years and a half years.
Continence NZ has lots of information on their website for children and you can also get a ‘toilet card’ – that states the holder has a medical condition and needs to use the toilet quickly. They also provide a free phone HELPLINE 0800 650 659.
Get an appointment before your child turns 4 and a half so you have access to free nappies.
There are visual toileting aids (ie, dvds, You-tube clips) that show toileting tips and cues.
Don’t put your child on the toilet every hour on the hour as this can weaken bladders, work out times that make sense and stick to a routine.
Taking up the carpet can make toilet training easier and less stressful.
Putting a sensory table in a child’s room can be a positive stimulus.
Make sure you are claiming the maximum Child Disability Allowance to help
If getting your child to sleep is a challenge, the DHB Occupational Therapist can provide you with advice on sleeping. You may also want to discuss this with your paediatrician or with other parents who have experienced similar issues.
The DHB Speech Language Therapist can provide you with advice on eating. Your local Child Development Service may also be able to refer you to the Paediatric Feeding Team (if your area has one).
How can I build my child’s confidence?
Sometimes a child sees the world differently to others (and struggles to make sense of the world around them). It can be difficult for a child who doesn’t feel they ‘fit in’. As parents we want to help our children navigate these challenges and build confidence in who they are.
There are a number of people, organisations or websites that may be helpful:
firstly, talk with others who may have had similar experiences
two useful websites that provide generic parenting advice and tips are Kiwi Families or K.I.P (Strategies with Kids/Information for Parents)
contact Socially Speaking who help children, teens and young adults with social, sensory and communication difficulties (in Christchurch)
Sue Larkey assists parents who have children with Autism or Asperger’s syndrome through access to resources and workshops.
If your child is showing signs of challenging behaviour, you can get a referral to Explore through your local NASC service. Explore works with families under the premise that challenging behaviour is a form of communication. They support the person with the behaviour and their family/whānau and support networks to develop strategies to reduce the impact it has on their lives.
How can I help my child get a good start with education?
Care Matters has co-developed (with the help of families around the country) a comprehensive guide and helpful tips to navigating the education system called Mapping Educational Opportunities.
If you have concerns about your child’s education needs, you can contact the Ministry of Education Learning Support Service and they will visit you and your child at home (and your child’s early childhood service if you attend) to get a clear picture of what is happening for your child and to discuss your concerns.
The Ministry of Education provides a wide range of supports from a young age to the end of school. This support is provided through their Learning Support service in partnership with the relevant education provider (ie, early intervention service, early childhood centre, primary or secondary school).
The type and level of support provided once at school will depend on whether your child is assessed as having mild, moderate, high or very high support needs. You will need to work together with all those involved to determine what type of support your family member will receive. It’s important to start this process well before the child starts school.
Your child may also have an IP (Individual Plan) or an IEP (Individual Education Plan). An IP is used prior to school and the IEP is used once at school. These plans are used to set goals, review progress and identify teaching strategies/resources needed to support your child.
You and your child have the pivotal role to play in these discussions. Discuss the IP or IEP process with your education service and how you can make the most of these meetings. It can be a good idea to take a support person with you when you attend these meetings.
How can I help my child transition to school?
Link with other families who have been through the process so you can be prepared and supported.
Start planning early so that support is in place when your child starts school.
Sometimes plans need to change and that may include changing schools.
Make an appointment to meet with the principal, ask about:
the support the school will provide?
how the school will ensure your child feels safe, welcomed and accepted?
how your child will be supported to be included in the life of the school, including lunch times, community activities or camps?
taking a tour of the school and visiting some classes
the classroom environment, equipment and facilities – check they are suitable for your child (ie, toilet, shower, accessible ramps, hand rails, etc)
how the school involves carers/family/whānau in your child’s schooling (and how they will keep you informed and up-to-date?)
how the schools SEG (Special Education Grant) is spent?
Individual Education Plans (IEPs) and how they will be used to support your child’s learning and who can attend?
be aware that to gain funding the focus is often on what your child ‘can’t do’ (support services often operate from a deficit model).
What are my education options?
Everyone has the right to go to his or her local school and be included. Here is some information on what to look for in an inclusive school.
Other options may include Special Schools which includes day schools and residential schools across New Zealand who support high need students. Special schools can provide specialist teaching and services to your child if they have high needs.
If you are interested in home schooling (often referred to as home education), you can download an application form (from the link above) and either email it or post it to your local Learning Support office. Kiwi Families also has some good information on home schooling.
Home educators are eligible for the home education supervision allowance. It is calculated on the number of children you are home educating. The annual total paid per child is as follows:
first child $743.00
second child $632.00
third child $521.00
subsequent children $372.00.
The allowance is paid in instalments twice annually – in June and December each year – for the preceding six months. The first payment for a child new to home education will cover the period from the date of the issue of the Certificate of Exemption until the next payment round, either in June or December of that year.
if you are not going to a local school, the Ministry of Education will not fund transport.
if you choose to home school, you are not able to access specialist resources.
Who can help me find information on funding or taking a break?
Weigh up what support is really needed and when this is needed?
Having lots of professionals in your home, giving you lots of advice, can be overwhelming. You don’t have to do it all. Work out what’s right for you and your family/whānau
Limit professional visits to one day per week (if possible).
Be clear about the purpose of the support and what the benefit to your child will be.
You can access the NASC and exit the NASC at any time.
Be honest about your day with your needs assessor.
It can be helpful to write everything down that you do during the day/week and all the assistance you or your child requires over that time. Be honest, don’t sugar coat it, and describe things as they really are.
Try to form positive relationships with the people who will support you and your family/whānau
You can have two agents appointed for Work and Income (Work and Income will provide you with a form that you will need to complete).
Where do I go to find other disability support agencies or information?
Youth Law is a specialist nationwide community law centre for children and young people under the age of 25. They have particular expertise in education law ranging from school enrolment and discipline to special educational needs.
The Health and Disability Commissioner (HDC) enforces the Health and Disability Consumers’ Code of Rights and provides an independent health and disability advocacy service. An advocate assists by listening to your complaint, giving you information about your rights and options for resolution, then supporting your option.
All efforts were made to ensure the information in this resource was accurate at the time of publishing. This document represents the current system and will be reviewed at a later date to reflect national changes.
If you have additional tips you think would be useful for carers/families/whānau, please email firstname.lastname@example.org for inclusion into future updates of this resource