We believe in Person-Centered Planning which means looking at cultural humility and competency, taking into account the whole person, including the complexity of his or her world view.
How can this be done when advocates do not even speak to other advocates, assuming rumors they have heard about other peoples beliefs rather than talking to the people directly? How can this be done with family, parent, and care-giving advocates are blocked from Parent to Parent groups or blocked from publicly funded advocacy agencies such as Disability Rights Washington, (Protection and Advocacy Agency for Washington Stated) or The Arc Franchises (which are non-profit but receive public funds for outreach and advocacy) – or from participating in the Developmental Disabilities Council – which is a Federal-State partnership working to plan for and with people with developmental disabilities and their families.
There is a huge abyss that so much hard work, passion and caring is falling into because of this lack of ability to communicate with others.
Disability advocacy should not be a tug-of-war between 2 opposing sides – but that is what has been going on for years and it seems to just be getting worse. Disability – and in particular intellectual/developmental disabilities – is a complex web of abilities, independence and inter-dependence. Many systems, which often are in their own silos, must be pieced together to make person-centered planning work for each individual. This is no easy task – especially when people, agencies and advocates do not communicate with each other.
In order to make things work, we need to communicate. We may not need to agree on everything but we need to communicate so that people know and have opportunities to understand what supports and services are needed in order to function in our communities.
Without communication and listening to those who actually use the supports and services, how can we, as a community help provide appropriate resources. Communication is critical in avoiding unintended and detrimental consequences such as the person becoming disengaged in the process.
We need to ensure that people who use the supports and services, in addition to families and caregivers, have opportunities to be involved in new program developments. The value of their life experiences is necessary in evaluation and feedback regarding the system and advising on policy decisions. These are the stakeholders who we need to communicate with – not just the “professionals” or service providers.
Any changes need to be transparent from planning, monitoring, implementation and evaluation of changes made, to those who will be utilizing the services. The individual, their families, direct support caregivers and friends are the experts that need to be heard with their collective voice of supporting the person who is the center of the plan.