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 and
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 community.
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.
Circles of Support
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.
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, this planning 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.
Information is gathered in creative ways from the disabled person and/or selected persons from their circles of support. This 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 a range of supports can be organised that makes sense to the individual.