Supporting people with 22q11.2 Deletion or 22q11.2 Duplication Syndrome.
Awareness, Education, Community & Support
Celebrating 30 years
Pathways for the Newly Diagnosed
If you have been on a diagnostic journey with your child, then it is likely that you have already been referred to a paediatrician. If you are still seeing your GP, then you should strongly request a referral to a paediatrician.
Some areas will have a developmental paediatric service and this is strongly recommended.
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Your paediatrician is the natural pathway to Community Mental Health services. Unfortunately these are not easy to access or maintain in NZ and you may have to be prepared to access a psychiatrist or psychologist privately in the first instance. However, if you child starts any pharmacological intervention for mental health (ADHD, depression, mood disorder etc) , then the service is required to see your child every three months. Waiting times can be long but once you’re in the system, then it’s important that your team stress that 22q DS is a developmental, life long condition and will require ongoing intervention both medically and behaviourally. Early intervention behaviourally ( counselling, anxiety strategies, anger management, coping strategies) can produce good longterm outcomes.
Once you have contact with a paediatrician, you can also ask for:
Referral to the early intervention educational service (Part of Ministry of Education)
Between your paediatrician and the Ministry of Education, you should be able have input from a neurodevelopmental therapist. This therapist will know of preschools in your area that run early intervention classes which your child can access from an early age. This helps with socialisation and quite often establishes a preschool relationship that you might choose to continue once your child hits kindy age.
Disability funding for respite and development
These are really important people! Your paediatrician can direct you however you can refer yourself and ask for an assessment. Find this page and read the directions. Once you have been assessed, your assessor will guide you as to what funding you have been allocated and how it can be used. Most funding is going the way of individual budget allocations called self directed funding. This means you are allocated a lump sum which you can draw on. You can employ people, buy necessary equipment, pay for activities – whatever facilitates and enhances the life of your child. Manawanui is a good example:
Generally, if you want to get an idea of where disability services in NZ are headed, check out Enabling Good Lives:
EGL looks different in different areas at the moment, so check in with the website and talk with NASC about the possibilities. Funding is there, but you do need to stay proactive to access the right people and places.