40 Big Ideas

Summary

Many people with and without disabilities have struggled to have the freedom to control their own lives. When people with disabilities started pushing back in an organized way, the idea of self-direction got started. It was about having people with disabilities control their support services instead of going through a provider.

The struggle for self-determination has been part of the human condition for all of recorded history. Many people with or without disabilities have lived with major infringements on their ability to chart their own life course. In the late 20th century, people with disabilities started pushing back against this in an organized way. One of the vehicles for this pushback was self-direction. To me (Andy), self-direction simply means I get to control every part of my life just like I would if I did not have a disability.

The history of disability policy is rife with examples of what the system thinks people with disabilities need and what programs, buildings, services, or Medicaid waiver programs would work well for them. These efforts are generally well-intended, but they have almost always been spearheaded by professionals (and sometimes families), and that’s not the same as people with disabilities choosing their own services and workers. Before I (Andy) started self-directing my services, I had very little control over which caregivers came, what time they came, or how long they stayed.

In the last 20 years, more people with disabilities have challenged this long-standing paradigm. Self-direction is a rallying cry. It’s the sound of people with disabilities saying, “It’s time for us to take charge of the funding appropriated for our services, where we want to live and with whom, and what supports and services we need to live our best lives.” I (Andy) strongly believe my quality of life is dramatically better because I can exercise some control over my services.

Self-direction is a way of delivering services based on the premise that every person, regardless of the nature or severity of their disability, has the right to exercise their free will in relation to their services to the extent they can and want to do so. Some people with disabilities need support to learn what their choices are, how to express their preferences, and how to manage the services they’ve chosen, but that support shouldn’t mean that someone else takes over their lives.

But how can a person with the most significant intellectual disability self-direct their services? The answer is that self-direction is always an exercise in interdependence - the person with a disability is supported by family, friends, support brokers, or others who help the person understand their choices and (if necessary) help them to make decisions. Every person has preferences, even if they need help to express them. With the right amount of support, I (Andy) believe anyone can successfully direct their own services.

There are now self-direction programs in every state (although some are small pilot programs) and in many countries around the world. Designing and administering these programs to ensure they reflect self-direction values is a challenge, and in most places it’s a work in progress. But already, comparisons of self-direction programs with other service delivery models have generally shown that self-direction results in higher consumer satisfaction, higher worker satisfaction and retention, more community integration, fewer out-of-home placements, improved physical and mental health, and good stewardship of public funding. For most people with disabilities who have had a taste of self-direction, there is no going back to the world of case managers, managed care organizations, and individual service plans developed by professionals.