6 - 18 YRS
THE SCHOOL YEARS
While your child is at school, they are covered by funded supports for their education and therapy, through the Ministry of Education. Based on the Inclusion Principle in the 2007 New Zealand Curriculum:
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Inclusive practice involves deliberately identifying and removing or minimising barriers to learning and wellbeing. It involves taking a Universal Design for Learning approach.
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By building learning supports and flexibility into the environment and learning activities from the outset, all ākonga can access the curriculum and participate in learning.
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By enacting Te Tiriti o Waitangi principles, inclusive learning communities plan and provide for all with pono (integrity) and aroha (care and sincerity), so that all ākonga are affirmed in their identity.
CONNECTION: 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 local community as much as possible. Join after-school clubs and activities - both mainstream and other. Creating solid, lasting friendships and relationships in your local community will help support your child as they prepare for their adult years, once school ends.
See Management for the basic changes during this stage.
Health, School & Life Planning
HEALTH
For general management of HEALTH matters eg. Seizures, Gastro/Constipation, Feeding, Musculoskeletal issues, and Puberty, see - Angelman Guidelines
Eye Care/Vision
Will Angelman Syndrome Affect My Child’s Vision? - Looking at potential eye problems in Angelman patients, and how to treat them
Dental Work
It is very important to keep a regular dental cleaning routine. You can use a soft tooth brush and/or a textured glove. While you child is in the bath, you can use the brush/your finger, to rub the tooth surface near the gum with a gentle circular motion, to remove plaque and keep gums free from disease. 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 colds, bronchitis and 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.
PLANNING AHEAD: 14 - 18 YRS
When your child becomes a teenager, it is important to start thinking about their future. Once school life ends, their everyday care & activities become your responsibility. You will need to find out what options are out there, and how you might manage that next big step. For a parent/whanau member, it is best to start considering this topic seriously when your child turns 16yrs.
Important Information for Parents/Whanau
Workshops, webinars and zoom sessions are held regularly by different organisations around the country to teach parents and whanau about:
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Legal Guardianship (necessary from the age of 18)
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Supported Living or Residential options
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Enabling Good Lives
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Person-Centred Planning
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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 local community until you find something that sounds suitable for your own child.
Timeline of Key Changes & Events:
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WINZ Benefit Supports - When your child turns 16, book an appoinment with WINZ to get their Child Disabilty Allowance changed over into a Supported Living Payment from WINZ.
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At 18, you will need to apply to the Family Court, for the legal role of Welfare Guardianship
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Your adult child can stay at school under the Ministry of Education (MoE), until they turn 21
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The last year at school is spent working on a Transition Plan - trying out suitable activities, programmes and opportunities, that are available in the wider community.
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When they leave school, their ORS funding package from the MoE moves across to MSD to fund a Vocation Centre or day programme for 3 days a week.
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Once your child has left school, you can use Individualised Funding (IF) to fund staff & activities, to support any shortfalls in daily activities.
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Enabling Good Lives is the new approach for planning a better, person-centred life. We can all follow the approach, but the 'system change' (flexible funding model) is still limited to certain regions in the country and has not yet rolled out nation-wide.
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.
Welfare Guardianship and PPPR
The Protection of Personal and Property Rights Act 1988 (“PPPR Act”) aims to protect the personal and property rights of an adult (from the age of 18) who cannot fully manage their own affairs. 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)
These guides are very helpful:
You can fill out the forms and submit them to the Family Court yourself (no fee), or do this through a lawyer (may incur fees) - or collate all the information yourself and have a lawyer check it over with you. You will need to pay for the medical report from your GP, and some forms must be signed by a JP. This may all seem daunting the first time you apply, but you can contact The Angelman Network for support. There may be someone in your region who assists parents with this process for a nominal fee.
The PPPR application process is repeated every 3 years.
Information on Supported Decision Making and PPPR, here: Auckland Disability Law
