Advice and information for those caring for a disabled family/whānau member
The intent of this document is to provide you with some information about key services that can assist you through the early years. This is the first of 4 resources that will provide information from birth to ‘Getting Older’. This is a living document and the sections will be finalised once all the sections have been completed (The Early Years, The Middle Years, Adulthood and and Getting Older).
A good start to life
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
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:
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
sometimes things might not be possible (for lots of different reasons) no matter how hard you try or want it. This can be a difficult time for parents. It can be helpful to write your feelings down, or or talk with others. Having someone you can ‘tell it like it is’, who understands and ‘gets it’, can make you feel less alone.
allow time to feel – this may include feelings of grief, anger, blame, guilt, anguish or relief
Speech Language Therapists can help with feeding, 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 (2 – 6 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
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 to ‘Where do I go to find other disability support agencies or information’?
Parent to Parent
Provides a freephone service and 11 regional offices for nationwide information and support, including connecting parents to other trained support parents.
Carers New Zealand
Provides a range of resources to support family/whānau, whānau, and aiga carers, which includes a freephone helpline.
Complex Care Group
Is a support and information network for carers who look after young people with complex needs.
CCS Disability Action
Provides support early on through a Community Support Coordinator who assists families to connect with other services.
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).
Can link you to workshops throughout New Zealand (facilitated by other parents and tailored to local needs). The website has a range of on-line resources.
Provides a range of supports, workshops, training and resources directly to disabled people and families living in Aotearoa NZ.
Altogether Autism is a free, nationwide autism spectrum disorder information and advisory service.
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 will need a referral from a doctor, the DHB or NASC service for equipment and modifications services (EMS). If you live in Auckland or Northland; contact Accessable on call free 0508 001 002. For the rest of New Zealand, contact Enable New Zealand call Free 0800 171 995.
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 from an early age.
What about toileting, sleeping and eating?
Toileting Your doctor, Pediatrician 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 fee nappies
there are visual toileting aids (ie. dvds, u-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 pay for some of the costs involved with toilet training (ie. extra washing/power).
Sleeping 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 pediatrician 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 Pediatric 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 helps 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 you want more specialist services you can get a referral to Explore through your local NASC service.
How can I help my child get a good start with education?
You can make contact with the Ministry of Education Learning Support service and they will visit you and your child at home and your child’s early childhood service, to get a clear picture of what is happening and discuss your concerns. If your child hasn’t started school the Ministry of Education provides an Early Intervention Service and has a useful pamphlet describing this service.
There are many other trust that provide early intervention services around the country.
Schools are able to refer students to the RTLB service (Resource Teacher: Learning and Behaviour) who work with teachers and schools to find solutions to support students in year 1 – 10 with learning and/or behaviour difficulties.
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. Discuss this with your early intervention service or 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.
NB: For a more comprehensive resource go to ‘Mapping Educational Opportunities”
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
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 parents/familiy/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 (IEP’s) 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)
sometimes plans need to change and that may include changing schools
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.
do you need support? 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/whā
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 anytime.
be honest about your day with your needs assessor
it can be helpful to write down everything 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 (you need to complete a form from Work and Income).
if navigating the funding system seems overwhelming seek advice from either another support parent or national organisation (listed at the front of this guide).
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.