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 Level.
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.
Regional Level.
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.
National Level
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.
International Level
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.
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