Transition to Adulthood

Adolescence can be a challenging time for both individuals living with PWS and their families. Like any teen, those living with PWS will naturally be trying to gain more control of their life and to develop independence. However, the health and safety risks associated with increased independence in PWS make it difficult to achieve this goal, so families have to work hard to try and ‘normalise’ the life of their teenage children as much as possible, and to access supports which may be available.

As they are for all teens, the adolescent years are also a period of physical and hormonal change, although puberty differs in PWS. These pubertal differences may cause upset and anxiety for teens living with PWS who want to develop in the same way as everyone else. They may also feel lonely if they are struggling with friendships or seeking relationships, and parents need to be aware of the increased risk for developing psychiatric illness in PWS, particularly during adolescence and early adulthood. Funded growth hormone treatment also ends at the ages of 14 for girls and 16 for boys, and parents may notice increasing symptoms of GH deficiency that affect mood and fatigue. Sex hormone treatments may be trialled and these can possibly have a behavioural effect too.

If teens are particularly struggling socially, emotionally, and not coping at school, a referral could be made to the Intensive Wraparound Service (IWS). Some pupils may also benefit from a period of enrolment at a residential special school (Salisbury School in Nelson and Halswell College in Christchurch). Parents should also be encouraged to use respite supports available to them to avoid burnout, because research has shown that caregiver ‘burden’ typically increases during the teenage and young adult years, with a marked worsening behavioural trend which can occur during the early adulthood years, especially in those with the mUPD genetic subtype. Parents may wish to trial local facility-based respite services, to request a reassessment of needs, and to start exploring supported living options for adulthood. It is a good idea to have appropriate, flexible funding in place before a crisis is reached.

Transition from school…

The transition from school process should begin around age 14 and become more focused as pupils approach leaving school. Transition from school to community life planning involves looking at vocational day programmes / opportunities, further education, employment, living options, mobility and transport, peer relationships, recreation activities, wider community supports, and pupil self-esteem.

During the transition process, the school, family and pupil work together on an individual transition plan (ITP or sometimes called an ICP – Individual Career Plan). Goals are set based on academic potential and skills, and the school should ensure access to alternative courses such as SPEC, life-skills or skills for living, Te Kura, and MOE vocational programmes, i.e. Gateway and STAR. The teacher coordinating transition will have local knowledge of organisations providing disability support, community participation and vocational or study options, but they may bring other agencies on board who can provide advice and help seek out local opportunities. From age 16, ORS funded pupils can access transition services funded by the Ministry of Social Development (MSD) if they are in their last year of school. Funding is for up to 12 months.

These transition services are delivered by a range of government and community based organisations; many are funded by MSD and are free, dependent on ORS funding. Some of the main providers of transition services are: CCS, IHC, Hohepa, Spectrum Care, Geneva Elevator and regional providers, such as Emerge Trust. A transition coordinator is appointed and the transition service, the Needs Assessment and Service Coordination organisation (NASC) and programme providers work together to ensure all the necessary supports are available. For students who do not have ORS funding, transition services are limited, usually with a waiting list, and often not free. CCS Disability Action provide some transition services for non-ORS funded pupils, but families may need to use other funding sources to access vocational programmes.

…to adult life

From 18 plus, it is recommended that students with disabilities be integrated into community settings like all school-leavers. This may include work experiences, tertiary study or further education taster sessions, part-time or supported employment, and recreation or leisure activities such as using pools, gyms, the library or joining clubs. The transition coordinator will look for and work with supported employment agencies, disability supportive business enterprises, vocational day services and other community participation organisations. For help with further studies, you may be able to apply for the Training Incentive Allowance from WINZ.

Accessing disability support services

Engaging with your NASC

It is recommended that you prepare for your child leaving school or home and securing the support they will need in advance. To do this, start noting every job or task you do for your child that is above and beyond what you would do for others. Include everything, from help showering to safety in the community to meal preparation.

Your NASC will determine your child’s eligibility for Ministry of Health disability support services and tell you what is available in your area. You will receive an allocation for Home and Community Support Services (Personal Cares, Household Management) and / or Respite (‘I Choose’ / previously Carer Support, Home Support – a ‘buddy’ / support worker for a set number of hrs per wk, facility-based respite.) You can then choose to use your allocation with service provider agencies (such as Spectrum Care, Community Connections, IDEA Services, Hohepa, NZ Care and CCS) or by using Individualised Funding (IF) where you source and pay your own support workers to provide the HCSS and Respite services via a ‘Host’ agency (fund manager).

The NASC can also allocate a number of sessions per week at community day programmes. Some of these are funded by the Ministry of Health whilst other community participation programmes are funded by the Ministry of Social Development. The MSD programmes available may depend on level of ORS funding or benefit. It may be possible to ‘top up’ your allocation using other funding sources or private funds.

Supported Living is also available via the NASC from age 17. If this is the right service for your child, the NASC will assess eligibility and provide information about providers in your area. Alternatively, Community Residential Support Services provide support for up to 24 hours per day and are jointly paid for by the MOH and your child’s WINZ benefits.

The disability support system is in the process of being transformed. The New Model of support is being trialled and demonstrated in some parts of the country and incorporates Choice in Community Living and Enhanced Individualised Funding (EIF). Traditional NASC assessments are being replaced by Supported Self-Assessments and Local Area Coordination will assist individuals to access funding from MSD, MOH and MOE to strengthen community connection and create more flexible support driven by their own goals. More information can be found on the Enabling Good Lives website.

Work and Income benefits

From age 16, your child will be eligible for further benefits and we suggest you register with a WINZ coordinator to check your entitlements. You are eligible for the Child Disability Allowance until your child turns 18, but your child is entitled to the Supported Living Payment from age 16 and if they receive this, the CDA payments stop. The Supported Living Payment is for a person with a disability who is unable to work 15 hours a week or more, or for full-time carers of a person who would otherwise need extended or residential care services. It is paid into the account of the person the payment is for but WINZ allow parents to be set up as an agent and will allow joint or trust accounts if you explain why this is necessary. From age 16 and with proof of costs (receipts), the Disability Allowance can help pay for regular expenses as a result of the disability, such as medical and travel costs. WINZ benefits may be used toward living arrangements, community residential support services, further education, support at work or to pay board at home. For further information about supports and benefits, such as the Residential Support Subsidy, the Accommodation Supplement and Jobseeker Support, please see our Supported Living and Residential Care page.

Welfare Guardianship

If you wish to establish Welfare Guardianship, this can be set up after your child turns 18, but it has to be done through the Family Court and your child has to have significant intellectual disability and be shown to not understand the nature and consequences of their decisions. It is renewed every 3 years. It is often used for authorisations for medical decisions and surgical procedures, or for difficult periods or times of crisis. Another option is Family Trusts where trustees own and manage property or assets for the beneficiary. Read more here about powers to make decisions for adults. The following tool kit contains very useful information about Family Trusts, Property Managers & Welfare Guardians.

Additional Resources

General Transition Resources:

Transition Expo – an expo is held in Auckland each year, usually in August. Expos are sometimes held in Wellington and Christchurch (Next Steps) – check the NZDSN and Enabling Good Lives websites for dates.
Transition Guidelines – ‘What’s Next?’– by NZDSN and the MOE for Wellington, Waikato and Central regions, but the general advice can apply to all regions.
Exploring Futures: 2012 and beyond – a guide to transition by MOE, CCS, Emerge Trust, IDEA, People First etc.
Disability Connect – offer useful transition seminars (located around Auckland.)
Transition and employment section of our NZ Links and Resources page – refer here for further transition, employment and job seeking resources and links.
Disability Support Services – your guide to – general information by LeVa and MOH
Carers section of our NZ Links and Resources page – refer here for further information and resources for carers.
FirstPort – NZ’s disability information database; a hub for links to other services.
How I make my decisions – a supported decision making tool by People First.
How’s it Going? – a self advocacy tool by CCS Disability Action which helps to reflect and set goals.

Transition Resources for PWS:

Education and Social Issues for Adolescents with PWS – Professor B.J. Goff
Social Life and Relationships: 18 – 25 years – by the PWSA(UK)
Behaviour Management 18-25 years – by the PWSA(UK)
Prader–Willi syndrome: clinical problems in transition from pediatric to adult care – Crinò et al, 2016.
Supported Living and Residential Care – further information and resources about living options for PWS and employment can be found in this section of our website on the Parents and Providers pages.