Person-centred planning is a fundamentally different way of seeing and working with people with disabilities. It is a way of encouraging and supporting people with (and without) disabilities to make autonomous choices for their own life – to support them in planning their own future as an adult.
"People with disabilities should be involved in decisions that affect them."
- Ch 5, Human Rights in New Zealand 2010
Angelman Syndrome, Adulthood and Person-centred Planning
Person-centred planning builds a shared commitment that recognizes and respects individual human rights. Every person who has Angelman Syndrome is an individual with their own unique personalities, personal preferences, likes and dislikes, strengths and weaknesses.
Even though a person with AS may be non-verbal, they communicate in many other ways. They DO let us know what they like and what they don’t like – what their interests and preferences are. They also have the right to be 'heard' and for their choices and preferences to be respected. They should be given the opportunity to give input and make choices about their own future, even if it is just a Yes/No response. A supported AAC communication system is key to independence and autonomy for non-speakers, and acknowledgement of this should be incorporated into the person-centred planning process. See Communication - AAC
With the support of a group of people who know the person with AS best, a visionary and flexible plan for their future can be drawn up and put into motion while they are still at school (from 14 yrs onward) - as part of their transition plan. The 'Circle of Support' group and the school staff can then begin to organise the supports and services needed for the person with AS to achieve their dreams and goals.
Key features of Person-centred Planning
Inclusion works best when everyone has a valued role in society.
See Social Role Valorization (SRV). A person-centred plan should reflect what
is important to the person (now and for the future) and should specify the roles
they can fill and the support they require to make a valued contribution to their
All decisions that affect a disabled person’s life should be based on what is
important to that person from their own perspective. The planning for
their future requires careful listening/paying attention to/observation of the
person by those who know them best. Because the young person with AS
needs informed choice about how they want to live and what supports will
suit them best, it is important to consider family members and friends as
full partners. The contributions that friends and families can make are
recognised and valued.
The person is at the centre of the plan. When the person is non-verbal, they should have
access to some form of AAC/communication device so they can contribute to the
planning process - even if it is just a Yes/No response. Person-centred planning
discovers and acts on what is important to that person. The process should be fluid and
flexible and requires continual listening, learning and action to help the person get what
they want out of their own life. Read more on person-centred thinking tools.
Planning is Empowering
Person-centred (or person-directed) planning, is when the person is at the core of the plan.
Family and friends are partners in planning. Planning focuses on the persons' unique talents
and personal interests, and looks to the future. Planning leads towards action and is an
ongoing process. In New Zealand, the initial planning meeting can be funded by
individualised funding (IF) and facilitated by approved organisations.
Planning Alternative Tomorrows with Hope (PATH) is a visual planning tool that
is used to solve problems, set short and long term goals, and create an action plan.
At a PATH meeting, information is gathered in creative ways from the disabled person,
and/or selected persons from their circles of support. This information is used to
create a visual plan of action. The aim is to find out what the person enjoys
doing, what they want to achieve and what sort of supports need to be put in
place to make this happen. This kind of Person-centred thinking and planning
is also a great way to show organisations and funding providers what is important
to the person and how support can be organised that makes sense to the individual.
Individualised Funding (IF) is available throughout New Zealand for eligible people.
IF gives disabled people more choice in how they are supported. Individuals with
Angelman syndrome can get IF if they have someone, eg. a parent or welfare guardian
in their support network who is willing to be their agent and manage their services.
Parents can contact your local Needs Assessment and Service Coordination (NASC)
service to learn more. They will do a needs assessment, which takes into account
essential need and natural supports available to you.
You can get IF for your loved one, if they:
have talked to a NASC to see if IF is suitable for you
have been allocated a 'support' that is able to be managed using IF.
Online Guide to Individualised Funding.
Transformation Disability Support System (NZ)
Changes are on the way. Enabling Good Lives (EGL) is a new approach to supporting
disabled people in NZ that offers greater choice and control over the supports they
receive, so that they can plan for the lives they want. EGL is a fundamental shift to the
cross-government disability support system to ensure disabled people experience greater
choice and control over their supports.
A basis of the EGL approach is that services and supports are tailored to reflect individual
strength, preference and aspiration. In this way, EGL will take different forms – person by
person, family by family and community by community. Disabled people, their families and
service providers are partners in the process of designing, implementing and monitoring the
EGL approach. It is being trialed in Christchurch and the Waikato. See the pdf, here.
Transitioning from school to adult life
Transition is a process that takes place over a few years - it is not a one-off event.
The transition from school process starts when the student turns 14 at the latest. It
is part of a specific planning process that identifies pathways to maximise
academic achievement as well as functional life skills. The main aim of transition
is to realise the hopes and dreams of the student. This has to fit within the hopes,
dreams and capacity of the family/whānau (some members of which often have
their own fears and expectations that will need to be considered, addressed and,
in some situations, challenged). The family/whānau are provided with processes
and information that will help them to create a positive vision of their child’s future.
- is a step-by-step guide designed for the young person with a disability
and is intended to help them find a pathway towards their dreams!
Download a copy here.
A Young Adults Guide to Flatting
"The stories contained in this booklet begin to help us recognise that a different reality is
possible. If people with a disability are to be supported to live lives that are – in the
ordinary sense – full and meaningful, then this can only be done when they are truly
engaged in the shared life of our community."
More links to Person-centred Planning Models
Person-Centered Planning and Self-Directed Service models are becoming more popular in the disability sectors around the world as they allow the person and their families a real say in how they will live out their lives.
Inclusive Solutions: Nottingham, UK - offer a range of inspiring inclusion oriented services including casework, person centred planning, innovative training and community building.
Western Australia Individualised Services - a member based organisation working in partnership with people, families, service providers and government to promote and advance individualised, self-directed supports and services.
Explaining MAPs and Explaining PATH - Helen Sanderson Associates (UK): an experienced international team, working collaboratively to embed person-centred practices in the heart of teams and organisations.
The Center for Self-Determination - non-profit organization, USA
Microboards in USA/Canada/Northern Ireland
Microboards first originated in Canada and eventually sparked interest across the globe. First in the US was in Maryland for a young man with Angelman Syndrome. Microboards or Self-Directed Support Corporations can now be found in many states and in other countries.
Vela Canada - a non-profit society in Canada that provides information and mentoring to individuals with disabilities and their trusted others to take greater control of his/her life by exploring ideas and options that can lead to customized, inclusive and creative supports and services.
Vela Microboard’s N.I. Ltd - (Northern Ireland) - a regional voluntary organisation with charitable status, which assists in the setting up of individual Vela Microboards.
Tennessee Association of Microboards and Cooperatives, Tennessee, USA
The Arc of Texas - promotes, protects, and advocates for the human rights and self-determination of Texans with intellectual and developmental disabilities, Texas, USA
Self-Directed Supports - Catholic Charities Disabilities Services, New York, USA
Alliance, Colorado - a nonprofit, statewide association of Community Centered Boards (CCBs) and Program Approved Service Agencies (PASAs)
Circles of Support - these circles are made up of friends, family and supporters. The person in the centre, gets to share what a good life would look like for them. The group then supports that person, and together they figure out how to make the plan a reality.
After the initial group meeting, the Circle of Support should meet up regularly to review how the plan is going and to make changes if/when necessary.
'Building your tribe' is important to prevent isolation and despondency. Building relationships is always reciprocal - everyone in the circles will benefit from these positive relationships.