Did you ever get a present that you didn’t really want from someone who really wanted to give it to you? Imagine you just got a present of a ticket on a bullet train to Berlin. But what you wanted was a rambler rail pass that lets you wander through Europe, exploring it at your own pace. Picture the scene. The giver waits eagerly poised for your appreciation. You grit your teeth and hope it looks like a smile. But you know they know. There is a slight tightening of the mouth, a spectral shift in the eyes. A disappointment has been committed.
It happens all the time, this unravelling of assumptions about what is important to whom. Anybody involved in services has got to have heard those lonesome train whistles in the night as another express hurtles to some bright, far-away destination filled with people who are gritting their teeth and hoping it looks like a smile.
Why is it that service organisations can expend so much energy in achieving things that are not really that important to people who use the service? This was the question the Council on Quality and Leadership in Supports to People with Disabilities began to address some time ago. The Council had 30 years’ experience of evaluating Services. Over that time, they developed a set of standards which represented the best professional opinion on the quality of services.
But something was wrong. The Council realised that meeting such expertly defined standards did not guarantee results for people who used services. They decided to stop talking to themselves and ask the real experts, the people who use services. What the real experts said came as a shock–because it was so obvious. People with learning disabilities said that what mattered most to them was the same stuff that matters to everyone else. They wanted things like friendships, a job, a place to live, contact with family, health and security. And they each had personal priorities and preferences.
For example, one person might want a job because they wanted the money, another because they loved that type of work; someone else might want a job for the status or for social reasons. The reasons count. They are part of the person’s motivation and direction. They say a lot about who the person is or wants to be. If we don’t know their reasons, we are less likely to know what really matters to people. And if we don’t really know what matters to people, how can we ensure that services are addressing what’s important? This is the essence of Personal Outcomes.
The Council asks two simple questions, then. What is important to this person? And what is the service doing to support them to achieve this?
Answering these questions involves meeting the person and discussing with them the 25 outcomes which research shows are consistently seen as important by people with disabilities. If the person is not able to communicate directly, the person who knows them best is invited to attend also. This may be a family or staff member.
After the meeting the trained reviewer will talk with other staff and family members and review any documentation. Once the information is gathered the reviewer has to decide whether an outcome is present as the person defines it and whether there is an organisational process in place to support that outcome.
For example, if the person is dissatisfied with the amount of social opportunities available to them, then that outcome is not present. If the service doesn’t know this or is doing nothing about it, then the organisational process is not present either.
Each of the 25 outcomes is scored in this way.
This information can be used to look at the quality of the service for any person using that service. It can help to explore future directions for their own hopes and ambitions and the necessary changes required in the person’s services.
When information of this type is considered across a number of individuals, patterns of strength and weakness in the overall service become visible and challenge the service provider to improve the service.
By gathering information from a sample of individuals each year, the Service can measure the improvement. Services can apply to the Council for accreditation following an independent review by trained Council staff.
The focus on Personal Outcomes shifts the ground for measuring the quality of a service from compliance with organisational processes to responsiveness to individuals.
There is no handy checklist of procedures that will deliver all the outcomes people want, because life is not tidy and because being human involves a certain messiness. But the real mess is when all your trains run on time and nobody gets to go to any place they want.