The perspectives of an individual with disability, delivered by that person at the right time, means that decision-making that affects that individual, will be well-informed and result in positive outcomes, especially related to quality of life.
There may be situations in which an individual cannot fully represent the individual’s perspective at a decision-making event that will affect the individual, because of age, communication facilitation, distance, lack of accessible transportation, appropriate supports, risks, and other factors. In these situations, policies are needed that outline what proxies, services, and supports, including technology, will be provided so that the individual’s perspective carries central weight in arriving at decisions that will affect the individual.
Community decisions affect the nature of what community members can expect and receive. People with disabilities need to be present when these community decisions are being made. Community decisions are related to a diverse variety of contexts – availability of housing, food and water, education, health care, jobs, transportation, justice, voting, leisure activities, and other elements of community living. Often community decision-making events address if something is going to be promoted, increased, improved, expanded or terminated, as well as the cost or savings involved.
The “how to” part of a decision to be made can benefit from the perspectives of individuals with disabilities; such as – where something is to be placed, physical access to it, and ability to use it/participate in its use with others; and when something happens, how frequently it happens, and for how long it happens. Decisions like these require policies, so that community expectations and what happens align. If individuals with disabilities play a role in making these decisions and shaping policies related to them, the outcomes for the entire community are enhanced.
Because of geography, race, language, religion, culture or other factors, people may come together to live and/or make decisions that affect large numbers of people beyond a particular community. Some decisions are value-driven – who should be included vs. excluded, who should “represent” a particular group, what are the assumptions underlying a particular value, and who or what has the power to change things? At this level, if and how individuals with disabilities are perceived – as an equal partner or something less – will influence whether their perspectives are part of the process of reaching decisions. If they are viewed as equal partners then decisions and their outcomes are likely to benefit great numbers of people.
At the national level participation at decision-making tables is pivotal. These decisions drive new policies and affect established ones. These decisions are shaped by what bubbles up and trigger what trickles down. Perspectives of individuals with disabilities, especially those coming from their problem-solving experiences, help to build policies that can be easily interpreted and practically implemented. Including these perspectives may mean that what is decided will pay off in intended and unanticipated ways – have positive economic implications, create new partnerships, and having a positive view of the future.
When the perspectives of individuals with disabilities are included and valued at decision-making tables then more meaningful discussions about what works, the importance of context, and judging of credibility within the process of decision-making surface. Resulting decisions are more grounded and people have more confidence in their feasibility and likely impact.
Intersectionality of Levels of Participation by Individuals with Disabilities in Decision-making
The inclusion of people with disabilities in decision-making is not a “snap-your-fingers” kind of thing. It takes thoughtful conversations, training, trial and error, and a full commitment to bringing it about. If an individual can leave home and travel to a meeting in the community, many things must be in place and work the right way first – personal care, transportation, and appropriate supports. When this person is seen and heard in a community decision-making meeting, things change. Others want to know how it happened. Others hope and take actions so they can do the same thing. As more and more people with disabilities are seen and heard at diverse decision-making tables in the community, this fact and their participation at regional decision-making tables becomes acceptable and natural. Behind them is what has been positively impacted at the community level. They arrive at regional decision-making tables with evidenced-based information. At the national level they have the same opportunity – to drive policies that are evidenced-based. For example, this is what we need in place to ensure educational opportunities, foster jobs, access to voting, or appropriate treatment by the judicial system. The collective experience of individuals with disabilities from across the globe brought about the U.N. Convention on the Rights of Persons with Disabilities and the inclusion of disability perspectives in the U.N.’s Sustainable Economic Development Goals.
Questions Related to Informed Inclusive Decision-Making
In order to bring about Inclusive, Informed Decision-Making at all levels we must ask ourselves six basic questions –
1. What types of services, supports, and accommodations must be available to an individual in order to leave home?
2. How do we bring about these services, supports, and accommodations?
3. How do we measure the impact of making these services, supports, and accommodations available?
4. How to we prepare and equip individuals with disabilities to become contributors in decision-making settings?
5. What do we need to know to bring this participation to new situations or the next level?
6. How do we measure the degree of participation in decision-making by individuals with disabilities and measure its impact in varied contexts?
As we answer these questions we will be able to judge whether participation of individuals with disabilities in decision-making is systemic, appropriately integrated into all components of decision-making processes, and can be sustained.