In PLAN’s early days, we felt we were playing teeter-totter with an elephant. The service delivery ‘elephant’ seemed too big and dominant. In order to give ourselves the time and space to develop our model, we tried to ignore the service delivery system. Most of our energy was invested in demonstrating that personal networks were important. However, it wasn’t long before families began asking us to advocate on behalf of their family members.
Since the reason to intervene was because something had gone wrong with the services they were receiving, our mindset was reactive, combative and suspicious. There was nothing positive or generative about our relationship with service providers.
Today, the value of personal networks to improve our social and physical health is well understood. As a consequence, PLAN’s mindset has shifted. While a ‘warrior’ mentality is necessary in certain circumstances, for example, when there is abuse and exploitation, in the long-term, an adversarial relationship is corrosive. It entrenches positions.
Furthermore, a prolonged atmosphere of conflict
is not in the best interest of our family member.
Services are one tool in creating a good life. A personal network is another.
The key is to understand what each tool can do and what it can’t do.
For example, networks can tap into the hospitality and goodwill of the community.
Services rely on a regulated system of trained staff.
Networks take their cue from the passion and interests of the individual. Services focus on needs.
Networks are flexible. They can arrange hockey games one week, a birthday party or coffee outing the next.
Services are based on standards and routines.
Networks explore possibilities. Services strive for predictability.
The best approach to maintain the quality of the programs and services your sons and daughters receive is to develop an authentic partnership with the providers.
More and more service providers agree. PLAN now has great working relationships with a number of agencies in British Columbia. We’ve learned to recognize each other’s strengths and limitations.
Most agencies know they can’t develop and maintain personal networks for their ‘clients.’ No matter how hard they try, the priorities of service provision always get in the way. Instead, these service providers focus on creating the conditions for friendships to develop, making sure their regulations and practices don’t unintentionally get in the way.
And, they ask PLAN to do what it does best: Network development.
Service providers are also undergoing a mind-shift. No longer do they see themselves as the experts providing ‘one size fits all’ solutions.
The work of Eddie Bartnik in Western Australia demonstrates the most advanced understanding of this changing relationship between parents, people with disabilities and the service delivery system. There are links to his writing in the Resources section.
Eddie identifies five elements of a genuine partnership between service providers and families:
CAPABILITIES – their focus is on the gifts and strengths of the individuals, not their needs
COLLABORATIVE – they actively involve individuals and families in designing new approaches
CUSTOMIZED – their programs and services are tailored for each individual
NETWORK CENTRIC – they recognize the individual cannot be supported in isolation from their family and friends
RESULTS ORIENTED – they measure success by whether the individual has achieved their ‘good life’ goals, not whether the agency has satisfied its funding contract.