Convention on Rights of People with Disabilities (CRPD) Article 19: Living independently and being included in the community People with disabilities have the equal right to live in the community. Measures shall be taken to facilitate full enjoyment of this right and their full inclusion and participation in the community through access to services to support living and inclusion in the community, and to prevent isolation from it Russian Federation ratified CRPD in 2012

What Do We Mean by Social Inclusion? Living and feeling included in the community Beyond a physical presence & involves Developing and maintaining reciprocal social relationships Having a rich social network that includes people beyond members of your family Engaging in daily activities in and outside of the home Having valued social roles and feeling valued by others Employment and other meaningful activities (including leisure and advocacy activities) Feeling that you belong Hall 2009; Power 2013; McConkey and Collins, 2010a

What Do We Mean by Social Inclusion? Cobigo, V., Ouellette-Kuntz, H., Lysaght, R., & Martin, L. (2012) defined social inclusion as a person having a sense of belonging in a social network within which they receive and contribute support; experiencing a valued social role, and being trusted to perform that social role in the community

Social/Community Inclusion Being part of your community rather than just living in the community i.e., Living a life that has meaning

Beneficiaries of Social/Community Inclusion Most often, the beneficiary is the person with an intellectual and developmental disability. BUT… Beneficiaries may also include People with intellectual and developmental disabilities as a group and Members of society more broadly.

Social Inclusion Outcomes People with IDD continue to experience high rates of social isolation (Bigby, 2008; Forrester-Jones et al., 2006; Milner & Kelly 2009; Robertson et al., 2001) Their social networks are: Smaller Less diverse, and Composed mainly of family members and professionals (Lippold & Burns, 2009).

Self-Determination: An Operational Definition Self-determination refers to individuals exercising the degree of personal control/causal agency over their lives that they desire within those areas of life that are important to them. Abery & Stancliffe (2003)

Self-Determination & Personal Control How are they are different? Shared Control Most individuals do not desire to have complete control but wish to share it in some areas with trusted others. Ceding Control to Others In some areas of life a person may not particularly value having control and voluntarily cede it to others. In other areas they may voluntarily cede control because they do not have the skills to make informed decisions Individual Differences/Change Across Time Areas of life over which personal control is valued are different for each person and typically change over time.

What is Self-Determination? Control over day-to-day decisions what to wear what to eat what time to go to bed Control over long-term decisions where and with whom to live where to work What type of work to do

Tripartite Model of Self-Determination Changes over TIME Exercise of Control Importance Desired Degree of Control Self-Determination

Self-Determination Competencies Persons with Intellectual Disabilities Knowledge Resources & the System Laws, Rights and Responsibilities Self-Awareness Preferences & Non-preferences Available Options Self-Determination Competencies Attitudes/Beliefs Internal Locus of Control Self-Esteem/Acceptance Sense of Self-Efficacy Determination Feeling Valued by Others Skills Goal Setting Choice/Decision-Making Problem-Solving Self-Regulation Communication Social Independent Living

Self-Determination Competencies Self-Determination: An Ecological Process Person Self-Determination Competencies Skills Attitudes/Beliefs Knowledge Macrosystem Family Microsystem School/Work Peer Group Exosystem Mesosystem Residential Exercise of Control Desired Degree of Control Importance SELF-DETERMINATION Changes over Time

Research on Self-Determination Children & youth with ID of all ages (as well as adults with ID) experience fewer opportunities for SD than their same age peers with other disabilities and their peers without disabilities Children & youth with ID of all ages (as well as adults with ID) experience lower levels of SD than their same age peers with other disabilities and their peers without disabilities Opportunities for SD as well as levels of SD among children and youth tend to be similar across siblings with and without disabilities

What Does the Research Say Higher levels of SD have been associated with… Higher levels of quality of Life Greater social inclusion Greater involvement in community activities More likely to have friends More likely to have supportive social network (social capital) More positive work outcomes More likely to be employed More likely to find employment in inclusive setting More likely to have benefits with job More likely to be satisfied with employment

What Does the Research Say Better academic outcomes Higher probability of finishing school Greater likelihood of being successful in inclusive settings More likely to be successful academically

Self-Determination http://www.selfadvocacyonline.org/stories/?story=N6RD5lmgyxs http://www.selfadvocacyonline.org/stories/?story=zd Anid3kC2w

Social Inclusion, Self-Determination & Service Models Increased social inclusion and self-determination are unlikely to occur when supports provided via a Medical Model with a focus on deficits and defects Supports Framework focuses more on the capacities, and gifts of persons with disability Disability as diversity Focus on supports rather than disability related challenges

Supporting Social Inclusion & Self-Determination Social inclusion and Self-determination do not happen automatically (at least at this point) Efforts to support these outcomes must be intentional As people with intellectual disabilities move from larger to smaller community settings we must also be careful to avoid creating a situation in which individuals experience: Greater isolation and loneliness; Less choice in their social relationships than they already experience Lower levels of self-determination due to lack of access & lack of support

Supporting Self-Determination & Social Inclusion Many keys to supporting positive outcomes in these areas including Foster the development of social capital Develop & support self-advocacy groups Avoid being overprotective…”allow people to fail” ( and learn from the experience) Provide opportunities for choice and control on an ongoing basis Identify and mentor community champions

Social Capital The extent to which an individual is connected to others, e.g. friends, colleagues, etc., and the level to which the relationships are reciprocal and based on mutual trust (Allik & Realo, 2004) There are three types of resources that constitute social capital: instrumental (help with taking care of a pet) emotional (talking about a problem with a friend) informational (information about job openings) (Condeluci et al., 2008)

Social Capital cont. We can differentiate two types of social capital: Bonding social capital refers to relationships with others who have similar psychosocial characteristics, interests, and engage in similar activities Bridging social capital is based on relationships with people who have different characteristics, skills, perspectives, and involvement in other activities (Walker et al., 2011)

Social Capital Outcomes Access to social capital has been linked to many benefits, including improved: Health Behavioral outcomes Educational outcomes Living situation Employment Self-determination Independence (Condeluci et al., 2008)

A Final Thought Frances Hodgson Burnett

University of Minnesota Institute on Community Integration (ICI) Global Resource Center on Inclusive Education (GRC) Brian Abery, Ph.D. E-mail: abery001@umn.edu Renáta Tichá, Ph.D. E-mail: tich0018@umn.edu