Positive Approaches Journal, Volume 8, Issue 2
Salzer | 29-35
Volume 8 ► Issue 2 ► 2019
Community Inclusion as a Human Right and Medical Necessity
Mark Salzer
Abstract
For individuals with behavioral, intellectual, and developmental disabilities, community inclusion refers to the extent to which individuals who experience disabilities have the opportunity to fully participate in their community and welcomed, embraced, and valued for the unique contributions they can make to society. Community inclusion is recognized as a human right and a medical necessity in terms of the extent to which it can leads to enhancements in physical, cognitive, and mental health and wellness. This article makes the case for the importance of community inclusion and introduces the key conceptual, theoretical, and evidence-based fundamentals for promoting it.
This article was supported by a grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) (90RTCP0001-01-00; Dr. Salzer, principal investigator). The contents of this article do not necessarily represent
the policy of the U.S. Department of Health and Human Services, Administration on Community Living, or NIDILRR, and endorsement by the federal government should not be assumed.
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Community inclusion2 refers to the extent to which individuals have the opportunity to fully participate in their community like everyone else and be welcomed, embraced, and valued for their uniqueness and abilities1. Community
inclusion has been a longstanding concept for policies and service delivery in the broader disability community for more than six decades, starting with the Danish “Normalization Movement” that promoted the notion that individuals with intellectual
disabilities should be supported to the extent that they are able “to function in ways considered to be within the acceptable norms of his/her society”2. Nirje discussed normalization in terms of ensuring that people with disabilities
experience “…patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life of society”3. Expanding on these ideas, Wolfensberger’s2,4 Social Role Valorization
Theory argues that promoting participation in valued social roles, such as work, school, religion, etc., reduces the risk that persons with disabilities are devalued by society.
The Americans with Disabilities Act5 was born out of these lines of thinking and established the promotion of “opportunity” for people with disabilities to live in the community in the law. International consensus on this issue was advanced
by the United Nations General Assembly that adopted the ‘Convention on the Rights of Persons with Disabilities’6, which argues that inclusion of those with disabilities is a human rights issue, and nations must “Promote full and effective
participation and inclusion in society, including…competitive employment, and participation in the economic, political, social, cultural, recreational activities of their communities.”
Community inclusion is more than a human rights issue, however. Greater inclusion leads to greater community participation, including work, education, religious and spiritual participation, engagement with family and friends, leisure and recreation, and other domains associated with a meaningful life. All of these are associated with physical, cognitive, and mental health and wellness benefits for anyone, including individuals with disabilities. It is in this sense that community inclusion, and the resulting participation, should be viewed as a medical necessity. This is consistent with the International Classification of Health, Functioning, and Disease (ICF), developed by the World Health Organization7. According to this framework, health is viewed as more than problems with “Body function and structure” (e.g., impairments or symptoms). It also includes “Activities,” the execution of specific tasks or actions, and of most relevance here, “participation,” which is defined as involvement in a life situation such as domestic life, interpersonal life, education and employment, and community, civic, and social life (e.g., religion, politics, recreation, leisure, sports, arts and culture, dating). The ICF recognizes community participation as one domain of health by itself, and something that has a positive benefit on body function and structure. Benefits associated with community participation on health, cognition, and mental health apply to everyone. Participation, for example, addresses social determinants of health8, such as poverty, social support, and educational attainment, reduces sedentary behavior, especially long, sustained periods of sitting or lying down, that have numerous negative health consequences9 and also enhances cognition. Engagement in meaningful activities is also associated with greater levels of happiness 10.
In the past, there have been doubts about the capacities of people with behavioral, intellectual, and developmental disabilities, including autism, to participate, especially for those with significant impairments, or whether participation would be
healthy. The movement away from institutional care, for example, has provided clear examples to the contrary, although doubts may remain about the extent to which participation can occur even for those in residential programs. The case for community
inclusion and participation as a medical necessity for people with mental health and other disabilities has been articulated in “Well Together,”1 where research is offered to indicate that participation is just as beneficial to the
health of people with disabilities as it is for the general population. While participation may look different for different people (e.g., different number of hours, modifications in what participation looks like, unique supports), it is clear
that inclusion and participation are accessible to all.
Fundamentals for Promoting Community Inclusion
Salzer and Baron1 describe eleven fundamentals for promoting community inclusion, supported by key conceptual, theoretical, and research evidence. While the fundamentals presented focus on people with significant behavioral disabilities, they are derived from efforts across all disabilities. They are briefly described here.
Fundamental #1 - Community participation is beneficial. Increasing efforts to promote community inclusion require an appreciation that the resulting participation has significant physical, cognitive, and mental health benefits for people with
disabilities.
Fundamental #2 - Community inclusion applies to everyone who experiences a disability. Beliefs that providers/supporters/caregivers are able to predict who is, and who is not, ready to participate, are not well supported by the research. Such
beliefs may be used to inadvertently restrict opportunities for full and meaningful participation among those who could otherwise participate to some degree and in ways that are specific to their interests and abilities.
Fundamental #3 - Community inclusion requires seeing ‘the person’, not ‘the patient’. Individuals with disabilities must be viewed as people who have hopes, dreams, desires and capabilities like everyone else that should be supported, rather
than solely as “patients” with an emphasis on deficits and impairments.
Fundamental #4 - Self-determination and dignity of risk are central to community inclusion. Self-determination refers to ‘acting as the primary causal agent in one’s life and making choices and decisions regarding one’s quality of life free
from undue external influence or interference’11. Dignity of risk is the “right to make choices that affect one’s own life even when these choices could, or do, turn out to be mistakes, allowing individuals to learn from their mistakes
along the way like everyone else”12. The decision about what areas one wants to participate in, and to what degree, is a decision best left up to the person, short of the rare circumstances when such participation might truly be dangerous
to them or others. Concerns about potential failure in participation should be weighed against the benefits of pursuing one’s own goals and learning from mistakes.
Fundamental #5 - Community inclusion embraces multiple domains of mainstream life. Housing and employment are important areas, but not the only meaningful areas in people’s lives. Efforts should be made to support participation in multiple domains
of community life.
Fundamental #6 - Community inclusion focuses on participation that occurs more like everyone else. While all participation has value, participation can be more or less like everyone else depending on where it falls on three dimensions. First, to
what extent is the participation occurring within programs or agencies (e.g., employment in sheltered workshops, movies onsite) or in the community (e.g., a competitive job, a move theater). Second, to what extent is the participation chosen by providers
(e.g., a staffperson comes up with the event, like going to an amusement park or picnic) or by the individual (e.g., person expresses desire to engage in an activity). Third, to what extent does the participation result in segregation (e.g., large
group of program participants going somewhere together or participating in an activity only with one another) or offer opportunities to interact with a wide variety of people (e.g., participation in the community with smaller groups or a natural supporter).
Fundamental #7 - Community inclusion is strengthened through emerging support technologies, the natural supports of families and friends, and the engagement of peer supports. A number of evidence-based modalities and practices currently exist that
can be used to promote a broad-range of community participation. These include practices that have emerged to support housing, employment, education, and other participation domains. Natural supports, such as family, friends, neighbors, etc., are
critically important and result in participation that is more like everyone else. Peer support is a well-established modality in the broader disability community, as seen most clearly in the independent living movement, and is becoming more established
in the behavioral, intellectual, and developmental disability communities.
Fundamental #8 - Providing support to family and other natural supports promotes community inclusion. Caregivers of individuals with disabilities participate less in the community and experience significant strain and distress. They are a critical
resource in the promotion of inclusion and participation and require support themselves to maximize their ability to support their loved one.
Fundamental #9 - Environmental barriers to community inclusion must be identified and addressed. The social model of disability13 understands disability, or lack of participation, as resulting from a poor person-environment fit, where
the uniqueness of the person are not accommodated by the environment. This results in disablement. Historic examples of barriers that have been addressed for individuals with physical and sensory disabilities include curb cuts, ramps, and braille
signage. Barriers may also include prejudice and discrimination, access to transportation and resources, and poverty, all of which need to be addressed.
Fundamental #10 - Community inclusion initiatives for individuals with disabilities maximize the use of mainstream community resources. Exclusive dependence on disability-specific resources for participation unnecessarily restricts access to the
plethora of community-based resources and activities, such as employment, education, leisure, etc. that are available to all citizens.
Fundamental #11 - Community inclusion requires establishing welcoming communities. Full inclusion requires communities that actively welcome and embrace people with uniquenesses. This requires appreciation and desire for diversity as a strength
rather than something to be feared.
Conclusion
Community inclusion and participation of individuals with disabilities is a rights issue as well as a health issue. The application of these fundamentals requires a substantial paradigm shift, and shift in practice, for some. This will be both challenging and uplifting as new examples of participation are achieved by those where it was not believed possible. While participation outcomes may differ across the range of capabilities among persons who experience behavioral, intellectual, and developmental disabilities, including autism, the focus of policymakers, providers, caregivers, and all other stakeholders should be to work to promote inclusion and participation to the maximum extent possible.
References
- Salzer MS, & Baron, R.C. Well Together – A blueprint for community inclusion: fundamental concepts, theoretical frameworks and evidence. Melbourne, Australia 2016.
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- Americans With Disabilities Act of 1990, Public Law No. 101-336; 42 USC 12211
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- Oliver M. The politics of disablement. London, UK: Basingstroke Macmillians; 1990.