top of page

Age Groups & Care Plans 

The care management for people who have Angelman Syndrome, changes as they move through the different stages of life.  

The latest Standards of Care for Angelman Syndrome document was published in 2022 by the Angelman Syndrome foundation, USA. This collaborative project documents common issues that accompany AS and the most common and established ways of providing care for the issues. 

Listed below is more general information applicable to NZ: 

  • Birth - 3 years

  • 3 - 6 years

  • 6 - 18 years

  • 18 years - Adulthood

A general resource for Health Care - Angelman Syndrome Clinical Management Guidelines 

Birth - 3 Years 

General Health

The diagnosis of Angelman Syndrome can be difficult in infancy because the typical characteristics aren't usually apparent at birth and symptoms may appear gradually. Even though sucking and breast feeding may be problematic, the infant can appear to be happy and healthy until they fail to reach certain milestones, such as sitting on their own.


Where there is an agreed concern with you and your GP that your baby may be “failing to thrive” or if there are other indicators that something is not as it should be, you should be referred to a specialist Paediatrician at your public hospital. The Paediatrician will do a detailed assessment and will have access to a variety of tests and other specialists in areas like gastroenterology, orthopaedics, neurology, etc.


In their role as care co-ordinator the Paediatrician can also involve other services such as Genetics Service - for specialist diagnostic tests for diagnosis of genetic conditions, explanation of the diagnosis, discussion of prenatal or pre-symptomatic tests for genetic conditions, and to discuss implications of a family history of genetic conditions. These services are based in Wellington and Auckland, but they have outreach clinics in other areas. Samples of blood will be sent to laboratories here in New Zealand, or overseas for further testing. 


Post Diagnoses

Once a diagnosis for Angelman syndrome is established (see Newly Diagnosed), clear information should be provided about the professionals who will provide ongoing treatment and care. One of them should take on the role of key worker to co-ordinate the health and disability needs of your child. 

Financial Support: If you qualify, you can then approach WINZ to apply for the Child Disability Allowance. Child Disability Allowance is a fortnightly payment made to the main carer of a child or young person with a serious disability. It is paid in recognition of the extra care and attention needed for that child.

Initially, the toughest aspects of Angelman syndrome for parents to manage, are sleep and feeding issues, and the possible onset of epilepsy. 



Children with AS appear to need less sleep than others and this can become extremely stressful because parents are faced with the urgent need to help their child sleep, as well as the need for the family/parents to sleep. Chronic sleep deprivation for parents can become a serious health hazard and negatively affect relationships, work performance, and personal safety. A lack of sleep for the child can also trigger seizures.

  • If you have the assistance of extended whanau or close friends, try to arrange overnight help to ensure both parents can get at least some regular sleep.

  • Using an enclosed bed such as a portable safety-sleeper with weighted blankets can create a ‘calm-zone’ for the child, which can help them sleep better.

  • Some families find their child sleeps better in a darkened room and total silence; others have found some soft light and ‘white noise’, works better.

  • Behavioral approaches under supervision of a specialist, can also be taken to train the child to sleep better. 

  • Medication is a last resort. Always consult your GP before proceeding with any sleep medications for your child.



Feeding complications are seen in the majority of infants with AS. Sucking can be ineffective and breast feeding may be problematic. Weight gain needs to be carefully monitored. Gastro-oesophageal reflux (GERD) is also common and can cause further problems. Infants with Angelman syndrome who have feeding difficulties may require special nipples,  medication to treat reflux, and/or tube feeding. In some cases, children are referred to Paediatric Gastroenterology – to evaluate and offer suggestions for treatment for problems with slow bowel motility, constipation, or gastroesophageal reflux.

  • It is not uncommon for children with Angelman syndrome to be tube fed. Most parents who have struggled with their child's lack of weight gain have gone this route and have very positive things to say about tube feeding. 

  • This case report describes the breastfeeding and bottle feeding challenges faced in the first 6 months of life by baby Leo, who was subsequently diagnosed at 12 months with Angelman Syndrome (AS): Case Study

  • When reflux needs to be corrected by surgery - Nissen Fundoplication



There is a very high chance of the onset of epilepsy so it is important to know what different seizure-types might look like. Record any subtle seizure activity you notice, either in a notebook (description and timing) or take a video clip and get to your GP as soon as possible. ​It is important to have an emergency plan from your paediatrician/neurologist before your child is 20 months old.  


Having an Emergency Plan in place can avoid unnecessary panic. It may include:

  • advice on what to look out for

  • how to place a child in the recovery position

  • how to time the seizure and how long to wait until you proceed to next step

  • access to emergency rescue meds you can administer yourself

  • an after-hours phone number

  • St John’s Ambulance Service phone number - 111 ​

Specialist Health Services

Access to specialist health services in the New Zealand public health system is controlled by a process of referral by health practitioners authorised to do so. Usually that is your General Practitioner. The only other source of specialist advice is to pay for private consultations from specialists in private practice. The public health system referral process should get you the consultations you need to diagnose and treat your child’s condition, whatever specialist you need to see. The referral will be to the specialist clinic at a public hospital and the consultation, and any subsequent laboratory tests, X-rays or scans ordered by the specialist will be free of charge.


Early Intervention Teams

These are set up in most centres, and may cover areas such as Paediatric development, Occupational therapy (OT), Physiotherapy (PT), Speech Language therapy (SLT). Families can access therapy services for their child from birth, through their local district health board. A referral can be made through your NASC (Needs Assessment and Service Co-ordination) service, paediatrician, GP (general practitioner) or health professional. You can also make the referral for your child yourself. Child development teams will refer on to, and work with, other service providers; for example, preschool educational services.

3 - 6 Years

Early Education

Your child should qualify for a teacher aide to support them while at preschool. There are several choices as to what type of preschool education you might choose for your child:

  1. Kindy programmes (public and private) are easily adapted to include a lot of sensory play and physical activities: all about kindy

  2. Playcentres are perfect for mums who dont go out to work: welcome to playcentre


NZ Code of Rights for all Health and Disability Services Consumers.


Note that children with AS can be more sensitive to anaesthetics and can take longer than usual to come around after a surgical procedure. Read more here.


Read here

Traditional and Alternative Therapies

Depending on each child’s individual needs, early intervention and therapies such as Physio/PT, Occupational/OT, and Speech Language therapy/SLT, are effective and beneficial to an individual and their family. A number of alternative therapies such as brushing, hippo-, hydro-, and music therapy, have also shown to improve general health and well-being. Therapy can also be in the form of play or an enjoyable hobby. Read more on therapies here.

Community Participation

Your Early Intervention Team will assess your child and help you access appropriate  equipment, housing, transport, and education - and help with day to day activity and participation in your community.  A variety of government subsidies are available for equipment, house modifications and modified vehicles but the criteria are complex and tight. Details of these criteria are available from the two agencies that administer the programmes:

  • Accessable – for the Auckland and Northland regions. Freephone 0508 001 002

  • Enable NZ – for the rest of the country. Freephone 0800 17 1981

The Lottery Grants Board

Individuals with Disabilities committee considers grants for vehicles and communication equipment to assist independence and access to the community. Applications are usually considered only when applications to government sources have been declined.

Mobility Cards

Parking concession cards are administered by CCS. All children with AS should be eligible for a mobility card, due to their permanent health and mobility issues.

6 – 18 YEARS


Eye Care/Vision

Will Angelman Syndrome Affect My Child’s Vision?

Dental Work

Keep a regular cleaning routine using a soft tooth brush and/or a textured glove. Use the brush/your finger, to rub the tooth surface near the gum with a gentle circular motion. Carefully hold the sides of the mouth up, to reach the back teeth. Have regular annual checks for cavities, and X -rays to spot any deeper issues, such as cracks, abscesses or the state of wisdom teeth, etc. Usually dental procedures are done at your local hospital under general aneasthetic.  

Respiratory Care

For children susceptible to pneumonia, The Vest® System can assist in airway clearance for patients suffering from airway clearance dysfunction, secretion retention and/or ineffective cough or secretion clearance due to immobility, deconditioning or muscle weakness. Read more here.

General info on HEALTH matters related to: Constipation, Feeding, Muscular/ skeletal issues, and Puberty, see: Angelman Guidelines

Community Participation

During this school-going stage, many extra supports, eg. equipment, physio and communication, will come through specialist therapists working within the education system. See Education. For other therapy options you may wish to explore, see Therapies.


Use the school years to work strategically on building more social capital for your child. Extend your child's 'social footprint' by getting involved in the school and your community as much as possible. More information and ideas for Social Capital here. Creating solid, lasting friendships and relationships in your local community, will help support your child as they prepare for their adult years, when school ends. 

WINZ Benefit Supports

When your child turns 16, inquire with WINZ if they are eligible for a Supported Living Payment from WINZ. 

18 years – Adulthood


In NZ, when your child turns 18, they are legally an adult. They will be discharged from all Child Services and will need to access their health needs through Adult Services. This process is not straightforward as different ministries and departments seem to use different transition processes.


In general, from 18yrs, all health matters will need to go through your GP first. The regular health monitoring of your child will cease and health matters will be treated when/if they occur. When necessary, the GP will then refer you back to the relevant specialists in the public system.

Planning a future for your adult child with AS

For a parent/family caregiver/whanau member, it is best to start considering this topic seriously when your child turns 16. See person centered planning.

  1. At 16, your child should receive their own Supported Living payments from WINZ

  2. At 18, you will need to apply to the Family court, for the legal role of Welfare Guardianship

  3. In NZ, your adult child can stay at school under the Ministry of Education (MoE), until they turn 21.  The last year at school is spent on Transition - trying out new activities, programmes and opportunities available in the wider community. 

  4. Enabling Good Lives is the new approach to support funding that has been rolled out across the country.

In the past, choices were limited to either keeping your child at home or placing them in a residential group home. Today, MANY more creative options can also be considered. Depending on what part of the country you live in, what gender your child is, your financial circumstances, your family traditions and dynamics, etc. you can help craft a better future for your child. With support, you can create a flexible plan that has your adult child at the centre.

Workshops are held around the country to teach parents and whanau about: Guardianship (from the age of 18), Supported Living or Residential options, Enabling Good Lives, Person-Centred Planning & Circles of Support. ​There are also many different organisations that have informative websites and provide courses about a range of life-style options for adults with disabilities. Keep researching and networking in your own community, until you find something that sounds suitable for your own child.

On Guardianship and PPPR (from the age of 18)

The Protection of Personal and Property Rights Act 1988 (“PPPR Act”) aims to protect the personal and property rights of people (from the age of 18) who cannot fully manage their own affairs. The PPPR Act covers situations where a person is able to make their own decisions but may need some help dealing with their affairs now or in the future (through an enduring power of attorney) and also when the person has lost all mental capacity (Court orders).

The PPPR Application process

Becoming a Welfare Guardian & Property Administrator or Manager

Parents are advised to begin the PPPR application towards the end of their child's 17th year ready to lodge when they turn 18. You can apply on your own by downloading the relevant forms from the Family Court website (Search PPPR) 


You can fill them out and submit them yourself (no fee), or do this through a lawyer (may incur fees). It may seem daunting the first time, but reach out to The Angelman Network for any advice or support. This application process is repeated every 3 years. 

These guides gives clear directions on how to fill out the forms.

Welfare Guardianship guide

A Guide to Making Applications under the PPPR Act

Further information here:

Occupation Options

Just like everyone else, many adults with Angelman Syndrome can find paying jobs which interest them and which they genuinely enjoy participating in. Employment is most successful when the environment is chosen by the adult, based on their own strengths and preferences.


Some examples are:

  • Promotions Distributor: posting flyers

  • Animal Care: walking dogs, shampooing dogs for a vet, grooming horses

  • Horticulture Assistant: washing out flower pots/planting at a nursery

  • Cleaner: vacuuming offices

  • Recycling: paper shredding

  • Patient Visitor: visiting the elderly and sick

  • Co-driver/assistant for deliveries

  • Artist/Designer: painter, photographer, print cards, wrapping paper, etc….

  • Writer: using new technology, anything is possible!!


Transition from School

Check out the following links: 


Day Activities & Programmes


This list is a work in progress. As Enabling Good Lives (EGL) is rolled out across the country and individuals participate in activities of their choice in their own communities (with support), there will be changes to way in which current day services are managed.

Community Day Services

Community day services help disabled adults who can’t find work to take part in their community and improve their interpersonal skills by providing access to regular meaningful social contact and stimulating activities. These services are changing since the introduction of the EGL approach, and are becoming more individualised.


They will include a range of activities depending on the provider and the person's Goal Plan (based on their interests and abilities). Activities may include:

  • daily living skills

  • education and learning activities

  • socialisation activities

  • inclusion within the local community

  • recreation and leisure activities.


North Auckland/Warkworth:



Residential and Independent Living Options in NZ

With the roll out of the EGL approach, families are now able to set up their own 'flatting' scenarios for their adult children - in their own community, with their own group of friends from school. firstly, groups of families get together with their vision. Then they approach their NASC to seek out a Provider that can offer the best support for their vision, within their local community.

Key words: family partnership, co-design, local community. 

Residential homes:

Independent supported living options:


bottom of page