6 - 18 YRS

SCHOOL YEARS

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, when school ends.

See Management for the basic changes during this stage.

Health, School and 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 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, 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. When school life ends, their everyday care & activities becomes your responsibility. You will need to find out what options are out there, and how you might manage that stage. For a parent/whanau member, it is best to start considering this topic seriously when your child turns 16yrs.

See person-centered planning.

Important Parent Information

Workshops, webinars and zoom sessions are held regularly by different organisaitons 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.

Disabilty Connect is Disability Information Advisory Service based in the Auckland region. Sign up to their newsletter.

Timeline of important Changes & Events:

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.
At 18, you will need to apply to the Family Court, for the legal role of Welfare Guardianship
Your adult child can stay at school under the Ministry of Education (MoE), until they turn 21
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.
When you leave school, the ORS funding package from the MoE moves across to MSD to fund a Vocation Centre or day programme for 3 days a week.
Once your child has left school, you can use Individualised Funding (IF) to fund staff & activities, to support any shortfalls in daily activities.
Enabling Good Lives is the new approach for planning a better, person-centred life. But this flexible funding model 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 gives clear directions on how to fill out the forms.

You can fill out the forms and submit them yourself (no fee), or do this through a lawyer (may incur fees) - or collate all the information and have a lawyer check it over with you. There may be someone in your region who assists parents with this process for a nominal fee. 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. Further information here: Auckland Disability Law