Informed Choice and Decision Making
By Tammara Geary

Historically, people with disabilities have not been afforded the opportunity to make choices. They are often presented with only one option, that being whatever the provider of services has determined to be the appropriate one, or simply the one they offer. Further, there has been an apparent belief that people with disabilities are not capable of making decisions. This seems to be more prevalent when referring to people with cognitive disabilities.  All too often, people and programs behave as though having a disability means a person cannot make decisions.

This is simply not true. People with disabilities, including those with cognitive disabilities, are capable of making decisions, and need to have the opportunity to do so.  In addition, proper information must be made available to ensure that the person has solid and satisfactory options.

In general, people make decisions based on a variety of factors. Consider how people make life decisions like buying a house or car, selecting a mortgage, selecting a doctor or a day-care provider, or selecting a job. We gather information, ask people for recommendations, research the possibilities, ask valued people in our lives for advice, ask questions and interview the person we are buying from. Then we match that to our personal needs, filter it through our own life experiences, and finally draw a conclusion.  We make a decision and move forward with it.

This may all seem quite obvious to the average person, but unfortunately, it is not always the case for people with disabilities, particularly those that may need some level of assistance in the decision-making process.

In part because of that history, and because it is clear that people with disabilities can make choices, the concept of “Informed Choice” has been developed.

While there is no “official definition” of informed choice in law or regulation, the following guidance was offered in the State Vocational Rehabilitation Services Program Final Regulations which became effective on March 13, 1997:

"Informed choice is a decision-making process in which the individual analyzes relevant information and selects, with the assistance of the rehabilitation counselor or coordinator, a vocational goal, intermediate rehabilitation objectives, VR services, and VR service providers." (CFR, February 11, 1997, Vol.62, No. 28, Rules and Regulations, pp. 6329-6330)

As a provider of employment services, your role is to support the decision-making process by providing whatever assistance is needed to reach a conclusion, and then honor the decision.

Informed Choice includes:

Accurate Information
The person needs to have the facts, understand the situation, and understand the results of each possibility.  Significant people in the person’s life can assist with gathering and understanding the information if needed

True Options
The word “options” implies more than one. And the word “true” is used here to indicate that all options should be satisfactory to the individual, meeting the individual’s desires, interests, goals, abilities, etc. Consider again the example of buying a house. When people start looking for a house, there are typically quite a few options within the desired price range and general area, with the desired number of bedrooms, bathrooms, and other features that are valued by the buyer. A good real estate agent will present several houses (options) to the buyer from which they can choose.  And if they don’t like any of the options, they keep looking! 

A good agent would never present only one home, or only one home with the features desired and another that is completely off the mark. Doing so would not be presenting true options and would likely irritate or alienate the potential buyer.

Likewise, true options must be available to people with disabilities in all work and life decisions they face.

Good Advice/Counsel
If advice is desired and needed by the individual, that advice or counsel should be filtered through the individual’s goals and interests, and should be designed to help the individual gather and understand information and options. A variety of people can serve as advisors, including spouses, friends, family members, or other significant people in the person’s life. The employment or career counselor can also serve as an advisor. 

Sufficient Life Experience
Most people’s choices are informed by their life experience. Though certainly not true of everybody, many people with disabilities lack significant life experience due to segregation or isolation. People likely have not had the same exposure to the community, and with a 70% unemployment rate, certainly not to the workplace.  

When this is the case, opportunities must be created to expand life experience. Strategies may include simple exploration of the community, joining civic or social clubs, accessing public workplaces, informational interviews, job sampling, and more. Several strategies will be discussed elsewhere in this website.

Real Control
People have to be in charge of there own lives. Again, that may seem like an obvious statement, but all too frequently this is not the case for people with disabilities. The individual involved should drive the process, and all other participants in the support team function at their direction similar to the ways agents or personal assistants function.

Keep in mind that personal control stimulates ownership and motivation. Consider an event in your life when you have not felt in control. Examples might be losing a job, serious financial strain, an elderly person moving into a nursing home, divorce. In all these cases, there is a loss of control where others make decisions that have a direct impact on you. Frequently those decisions are unwanted – they are not your choice.

Being in a situation where you have little or no control is extraordinarily stressful and unpleasant. While everybody faces some loss of control in life, they typically maintain control of the more mundane elements of life: what you eat, what you wear, who you associate with, where you live, where you work.  People with disabilities deserve the same control. A good provider supports the person to assume that role.

Support for Decisions
This means you have to honor the decisions made, even when you disagree.  With a solid informed choice process, the person has had the opportunity to consider the options and try them on for “fit.”  It is that person’s life. He or she calls the shots.

Now don’t take this to an absurd level. This does not mean supporting somebody to lay on the railroad tracks, or drive without a license, or pursue a career as an art thief, or pursue a career as an astronaut when it is clear the person’s limitations won’t allow him to pass the basic admission requirements for the profession.

It does mean that when a person makes an informed decision to pursue a career goal or occupation, you support it even when you think another occupation might have suited her better. When she chooses a specific job or workplace, you support it even if you think the other workplace would have offered easier accommodation.

Your role is to provide direction, guidance, options, and clarification, and let the person drive.  It is sometimes tough to be the navigator rather than the driver!

Support for Working a Plan
As decisions are made, and plans are created, provide and create whatever support is necessary to make the decision a reality.

This article was abstracted from Customizing Employment: Planning, Developing Opportunities, and Supporting People in the Workplace  written for Georgia Project Access, a project funded by the U.S. Department of Labor Employment and Training Administration.  Used with permission.

Tammara Geary is a Partner at Griffin-Hammis Associates LLC (www.griffinhammis.com), a full-service consulting and training firm specializing in community rehabilitation improvement, leadership development, supported employment and self employment. She can be reached at tammarag@@msn.com.