Positive Approaches Journal, Volume 8, Issue 2

Volume 8 ► Issue 2 ► 2019

Meaningful Community Engagement

Volume 8 ► Issue 2 ► 2019

Data Discoveries

The goal of Data Discoveries is to present useful data using new methods and platforms that can be customized.

Participating in communities is an important part of everyday life that allows us to meet new people, learn, and grow. Communities may be our families and our homes or where we live. Communities can also be our building, block, or neighborhood. Whether you live in a city or on a farm, being a part of our communities helps us meet new friends and learn about other people and ourselves.

In this issue, Data Discoveries presents a map of one type of participation in communities: community events gathered by the Autism Services, Education, Resources, and Training Collaborative (ASERT). Each dot on the map represents a zip code where an event or multiple events were held or will be held (through 2020). This map is a heat map, where multiple events are represented by changing colors of the dots, moving from green for one or fewer events to red for many events. Hovering over the dots also displays a bar graph displaying the number of community events within each zip code, within each the county, and compared the statewide average by zip code. A slider bar for date ranges is in the upper left hand corner to allow you to filter the dates between 6/1/2018 through 3/27/2020.

Zip codes and counties with the most events are the areas of Pennsylvania with the most people (population centers, or cities including Pittsburgh, Philadelphia, and Harrisburg). Maps like this can be used to help people learn about community events near them or determine new parts of Pennsylvania where community events are needed or can be developed.

Learn more about participating in your community by visiting the ASERT Collaborative or Philadelphia Autism Project calendars of events. The ADA National Network also has a Planning Guide for Making Temporary Events Accessible to People with Disabilities.

Volume 8 ► Issue 2 ► 2019

Case Study of Independence: Daniel’s Journey

Susan Cherundolo

Abstract

This case study provides insight to the challenges and barriers to independence for participants who are dually diagnosed with Autism and mental health issues. This article will identify action steps that are replicable across community settings to increase independence for individual clinical needs and profiles. The following case study focuses on an individual named Daniel, who was living in a state hospital for individuals with psychiatric diagnoses. Today, Daniel is living in his own apartment with three housemates. He is active in his community and exploring friendships and intimate relationships, as well as the challenges that may present.

Daniel has had many obstacles along his path to independence but has been able to continue to thrive with the assistance of his team, including his family. Daniel is fortunate enough to have a multi-disciplinary team with great diversity: providers with experience in supporting people with autism and individuals from the mental health system to provide support from that perspective. Daniel’s team consists of two Behavioral Specialists, various Residential and Community Support staff members, a job coach as needed, a mental health blended case manager, a house manager for his apartment, a psychiatrist and medical doctor, and a supports coordinator. His behavior specialists work with him on how to manage his anxiety, frustration, and anger. They understand when Daniel becomes upset and potentially verbally aggressive. They never hold this against him and always follow up with him to ensure he knows they continue to support him. Residential staff is available in the home, so Daniel is supervised at all times, but he is able to go for walks on his own and can be alone in his room. His community support staff help him participate in community and social activities and often joke with him when he is feeling down. Staff assist with transportation when Daniel wants to visit his parents. Daniel’s clinical coordinator through his residential placement remains in contact with his supports coordinator to ensure all hours in his Individual Support Plan are authorized as needed. His clinical coordinator is notified anytime Daniel has a concern or question and always has her “door open.” Daniel’s house manager assists with managing any apartment or housemate related issues. Daniel’s Blended Case Manager helps him locate resources as needed, such as a rep payee (someone to manage his SSI payments), Office of Vocational Rehabilitation (OVR) services, or applying for jobs or colleges. He also assists with any mental health resources as needed. Daniel sees his psychiatrist quarterly to discuss any medication-related concerns.

Daniel also has a special mentor named Lisa who was previously his house manager at his residence. She continues to be an important part of his team even though she has different administrative duties now. She is always there to lend a hand or an ear to Daniel when he calls or needs something. Lisa is very invested in Daniel’s care and wants him to be successful.

Overall, Daniel’s quality of life has improved greatly since being discharged from the state hospital in 2017. He has stated that he is grateful to be out of the hospital and living as independently, as possible. He enjoys going places with staff and learning how to do things on his own. He continues to learn new ways of navigating relationships and social opportunities. He is hopeful that he can live on his own someday, with the continued support of his team, as needed. Having this strong team has improved Daniel’s chances for success even when he, himself, is doubtful of that success.

Volume 8 ► Issue 2 ► 2019

More Than a Village

Ian Lupey, Heather Moran, and David Leamer

Abstract

A case-study is presented of an individual who lives successfully within numerous community-based social networks, resides in own apartment, independently navigates transportation, works full-time, and enjoys a robust variety of individualized hobbies and interests.  Yet, six years ago, access to these community supports led to an increase in challenging behaviors and more limitations to community integration.  An analysis is made to the successful aspects of treatment which is hypothesized to include:  person-centered programming, attention to underlying function of behavior, maximizing natural supports, and ongoing focus on objective measurement of progress.

Success never read the textbook.  As professionals in our field, we continue to read and research the latest strategies built on pre-existing data.  Those textbooks and peer-reviewed journals outline successful strategies through supporting data and reflect current approaches within the field. Although sometimes under-estimated within the field, the role of natural supports can often be the most integral part of one’s success. A strategy at home may be the only strategy necessary for an adult with Autism Spectrum Disorder (ASD) if implemented by the individual’s parents, but what about a boss at work or the waitress at a favorite diner?  This article highlights how one individual’s path to success was influenced by a community of supporters, including individuals who were not part of the immediate treatment team.  As numerous researchers have noticed, “One of the most provocative avenues is extending beyond individuals with disabilities and the services system, to understand and impacting larger community itself, this is an exciting frontier” (Novak et al, 2013).

Challenges within the Education System

Leo sought to be like any other person chasing the American dream: working to support himself, living on his own, maintaining a social life, and staying true to his own hobbies and interests.  Leo had been diagnosed with Autism at an early age and his parents did not always know what supports were available.  During his primary school years, Leo made progress academically, but behavioral challenges became more disruptive.  Behaviors of concern included retracing his steps, spending excessive amounts of time washing his hands, over-eating, and other disruptive behaviors that drew attention from peers and the school staff.  Even though it may or may not have been the original function of these behaviors, Leo received attention and it strengthened those “problem behaviors.”

After graduating high school, Leo enrolled in higher education.  He attempted to complete a bachelor’s degree and found support along the way from various faculty and staff at the university he attended. While in two separate post-secondary educational settings, and with numerous natural and college-based supports, Leo found it impossible to maintain academic and social success.  He was frequently distracted and disorganized, misunderstood socially by peer groups, and increasingly feeling a personal sense of anxiety and displeasure with remaining in that setting. His parents did notice; however, he was well liked by some of his peer group, had a very positive influence on many of those around him/roommates and had unwavering support and understanding from many faculty members.  Following two unsuccessful attempts as a full-time student, Leo returned home and began employment in his local area in the restaurant and landscape industry.

Life after School

Running low on ideas and still hoping for a life outside of the nest, Leo’s parents helped him to find placement in a residential setting where he could receive support while gaining independence.  As a result, Leo began living with several individuals who also presented with a variety of behavioral and other challenges.  During this time, Leo began working at a local dining establishment.  The team quickly learned this was not an appropriate placement due Leo’s overeating behavior with access to unhealthy foods.  Leo was able to secure a position in a different department within the same organization.  With these large steps towards independence, Leo and his parents sought out more services: integration, employment, and behavioral supports.

While living with individuals in the residential setting, a new behavior developed as a coping skill: elopement.   With the behaviors of his roommates causing him anxiety, Leo developed this behavior to avoid them.  Leo would often leave the home without telling anyone and staff was often unable to locate him. This became problematic and resulted in a team unable to provide services.  Together, Leo’s team decided that living in this type of residential setting was detrimental to his goals and they began working to find different residential options. A Section 8 apartment with significant rent reduction became available and Leo was determined to give it a try.  When Leo moved into his own apartment, the pressure was on for the treatment team. 

Individualized Planning

In this new and independent setting, Leo’s team focused their approach on individualized planning, more specifically those supports Leo had naturally acquired: college faculty members, bosses at work, band members, etc.  Given Leo’s ability to pair with these individuals and prior learning history, his team gained insight into how to teach skills across settings.  The community members that Leo learned from became “influencers,” both as a result of their leadership roles and personal interest in Leo’s success.  These important individuals were impacted positively by the opportunity to support Leo and play an integral role in his success.

The next step was identifying and addressing the functions of his behaviors.  Leo’s team identified two functions that were maintaining the problem behaviors: sensory and attention.  It became clear that the initiation of the behaviors was to satisfy a sensory need; however, as a natural consequence, Leo was also obtaining social attention. The team had to carefully select which strategies would be effective to increase appropriate behaviors without reinforcing the problem behaviors that were maintained by attention. Analysis to the function of behavior can be a bit more challenging when working with adults in the community yet remains an imperative step to determining the most effective strategies to implement.  “Specifically, practitioners must continue to expand and develop effective functional assessment models to specifically address the unique needs of adult populations and service settings.” (Manente et al, 2010)

Identifying Effective Strategies

Finding effective strategies began with improving motivation.  “A meaningful life requires reinforcement that is overarching, intrinsic, and positive.” (Villatte et al, 2016). Lucky for Leo’s team, the most effective reinforcer was always clear: social interaction.  Many of Leo’s hobbies of playing instruments, singing, and bowling included a social aspect.  Leo’s team, now having grown to include the influencers, used social interaction to not only motivate Leo but to reinforce him for success. 

Beyond motivation, the team relied primarily on the prompting hierarchy.  When learning a new skill, Leo’s team would use most-to-least prompting to ensure Leo was learning the skill without any errors.  Most-to-least prompting would start with a team member modeling or demonstrating the skill/behavior.  Then, the team would use verbal prompts (“Do this first” or “What do you do next?”) and continue to fade to only gestural prompts (the team would point to a task to be done).  Once Leo demonstrated the skill independently, the team would move to least-to-most intrusive (e.g. starting with a gestural prompt and moving up to modeling).  This style of prompting allowed Leo many opportunities for independent success. 

Maximizing Natural Supports Through Community Integration

If a problem behavior was observed, reinforcement was withheld until the appropriate behavior was displayed; this is part of a more comprehensive instructional strategy known as differential reinforcement. In the case of repetitive/restrictive behaviors (i.e. retracing steps, washing hands, etc.), reinforcement was withheld until the behavior lessened. This style of reinforcement was very effective in strengthening the appropriate behaviors and decreasing the problem behaviors. Once the most effective strategies were identified, Leo’s team implemented them in all settings so the influencers could learn the strategies as intended.

With help from Leo’s team, each influencer learned how strategies were implemented and the rationale. The influencers were quickly reinforced by Leo’s appropriate response to the strategies. For example, when the choir director learned the prompting hierarchy, he did not have to stop a song to prompt Leo; he simply needed to give a gesture. When Leo’s boss learned to acknowledge only the appropriate or alternative behaviors, he noted that Leo was more aligned to the regulations in the work setting. Without exception, each community influencer was easy to approach and very willing to be flexible and make accommodations with relatively little effort. It was important to have Leo's support and participation with each individual and he was a key component to explaining how he needed added support. It is important to identify some relatively minor adaptations prior and go into the meeting with a specific request in mind and indicating that it might only be for limited time-duration.

The team taught Leo new skills including cooking and cleaning through social motivation while he lived independently in his new apartment. The team would remind Leo of the social significance of the skill.  For example, to help motivate Leo to keep his home clean his team would remind him if a girlfriend were to visit, she may not enjoy seeing his apartment with dirty dishes in the sink.  Leo continued to engage in repetitive behaviors so his team would remind him it would be rude to keep his friends waiting. At work, Leo learned new aspects of the job and was able to work with different people in different departments of the facility.

Once these skills were learned and he was fluent, Leo’s team facilitated the social interactions that were highly motivating. The team helped Leo invite peers to his place to watch a movie or play a game and would go as far as offering to drive individuals to and from his place.  Leo was then able to make the connection between having a clean apartment and his peers having a good time.  When Leo demonstrated success regulating behaviors in the community, he was naturally reinforced by additional time he could spend with his friends. 

Leo now has a reinforcer day built into his schedule. These reinforcer days include Leo heading into the community to meet up with friends or making new ones at a local coffee shop, bowling alley, or band practice.  While at these places and interacting with the community, Leo is able to practice skills with careful supervision from his team and those influencers. Practicing skills across the many settings with many different community members helps Leo strengthen those skills.

Leo learned many new skills and is still living on his own to this day. However, many of the problem behaviors Leo demonstrated in high school are still present; so how can success be measured?  From the beginning, the team, including those influencers, collected data to track Leo’s progress. The frequency data suggested that Leo is retracing fewer steps. The duration data showed staff that Leo was spending less time washing his hands. Leo’s team also took into account that some skills (appropriately portioning out meals) did not occur at a consistent rate, so the measurement had to reflect successes out of opportunities. Based on the results of all the data collected, the team is able to determine that the behaviors are becoming less socially significant.

Leo identifies success as living independently, supporting himself financially, and staying true to his hobbies.  Leo has a village of family and support workers who help him every day, but it was outside that village, in those influencers, where Leo found the most success.  Those natural supports continue to be present in every aspect of Leo’s environment and strategies are implemented consistently in all settings. Achieving success will vary with each individual. Success was knocking on Leo's door and he answered it. Leo's success was achieved through proper motivation and a team including his village and beyond.

References

Volume 8 ► Issue 2 ► 2019

The Gift that Keeps on Giving: Social Role Valorization as a Framework for Designing Good Supports

Elizabeth P. Neuville

Abstract

Despite many years of operating community-based programs with the intention to assist people with disability to have full, rich meaningful lives, some of the biggest hoped-far gains, such as an end to degradation, isolation, and rejection, and a full welcome to people with disability to share everyday lives with other citizens, have eluded us. This paper outlines the basics of Social Role Valorization as a well-seasoned framework and offers encouragement to adopt and adapt its principles to help services better deliver on their promises to the people they serve. In summary, positive behavior support is an evolving practice that integrates person-centered values with behaviorally based scientific practices and other theoretical orientations to address the comprehensive needs of individuals with developmental disabilities. At the heart of positive behavior support is the person we are seeking to support. Our allegiance is to that person, requiring us to be person-centered while drawing from the most effective approaches science and our collective professional wisdom has to offer.

Background

In nearly five decades since Dr. Wolf Wolfensberger published The Principle of Normalization, a transformative idea set which sparked the community movement, at least for people with developmental disability, in North America, parts of Europe, and Australasia.   At the time, the brutal conditions in the large-scale institutions, such as euphemistically named state schools, state centers, and state hospitals were revealed for all to see, thanks to intrepid change agents like Burton Blatt, Bill Baldini, and many others who captured and described the conditions. Images of the realities of the institution came into our living rooms and forced us to see “man’s inhumanity to man.”¹ Although it was obvious that what was happening in those places of despair was, quite simply, wrong, it was hard to discern what should be for people. In other words, what would be right? Normalization provided the first clear guidance on this, and across the western world, it was seen as the spark that was needed to fuel the creation of a community system. The key idea, simple yet elegant, was that people who are marginalized and devalued should have life conditions that are at least as good as those of typical citizens. There was great hope that what would be created for people with disability – typical residences, valued work options, full integration, and full lives - would stand in sharp contrast to years of segregation, mistreatment and neglect.

However, as the community system was constructed across the United States, it became clear to those developing and using Normalization that deep social devaluation, oppression and segregation was continuing in more subtle and hard-to-see ways, even in more typical settings like group homes and supported living models. The institutions were improved, no doubt, and yet the essence of segregated institutions – places of purposeless life-wasting- held on, and the institutions, in their appearance, became much more palatable to everyday people. One might say that we put curtains on the institutions, and it became harder to recognize the nature of the beast. In many ways, the hoped-for changes towards a community system of support had eluded us. For these and other reasons, in the 1980s, Normalization was re-conceptualized into Social Role Valorization (SRV), a more deeply nuanced set of ideas which was built on top of Normalization, with many powerful components.²

A Refresher on Social Role Valorization

Social Role Valorization (SRV) is based on a framework of understanding how people come to be at the bottom of the social ladder, and what really works in people’s lives to lift them out of this social devaluation. The central strategy is to assist people who have had very negative societal roles – such as burden, eternal child, menace, sick, ‘better off dead’, human service client, object of ridicule to name a few – instead be assisted to move toward valued roles, like citizen, taxpayer, neighbor, big brother, student, employee, homeowner, amateur artist, club member. These valued roles carry great weight for all people, as they are the means through which all people gain access to really important things like acceptance, belonging, a good reputation, a strong self-image, opportunities, and a full, rich life.³ Services which support and assist people to have valued social roles as a focus point seem to be the ones which provide the greatest well-being to the people they serve.

Unfortunately, most services, in these enlightened days, seem to focus on activities in and of themselves, rather than crafting a vision of valued roles for each person they support, individually, then moving towards that vision by enabling activities which are directly related to the development of valued roles. SRV offers a fundamentally different understanding. Competency development is one way to build towards valued roles – for example, assisting someone to be in the role of fisherman or woman involves learning at least some of the skills needed to fish, but also involves helping someone to have the image of the role – by having the equipment, the license displayed, the right clothing, and many subtle and obvious cues, not to mention all of the people that a fisherman or woman would typically interact with. Much more remains to be said about valued roles, their benefits, and how to support people with disability to grow into them successfully, but a deeper study of SRV can be pursued elsewhere. In science, SRV would be said to be an elegant theory, meaning that it is a simple concept from which many, many corollaries and aspects can be drawn. Indeed, SRV is not a method, there is no checklist, no workbook, and no ‘package.’

An organization does not “do” SRV – but if used as a foundation, it seems that whatever methods an organization uses can be done better, deeper, more fully, and with more positive benefit if laid on a strong foundation of SRV, provided the method has relevance and potency in and of itself, and does not cause harm to people.⁴ For example, it seems that the practices of positive approaches, or person-centered planning, or applied behavioral analysis, or any other number of practices can be done with more depth, sensitivity, equity, responsibility, and success if the practitioner understands what SRV has to teach us. Understanding the important SRV frameworks such as the existential wound of segregation and rejection, the power of the physical environment in shaping behavior, the importance of valued societal participation, allow practitioners deep insight into the most powerful determinants of how people come to experience belonging and acceptance. For instance, inclusive education will be, quite simply, more inclusive and successful with an understanding of the power of imitation and modeling and role expectancies offered by SRV theory. Helping people have freely-given relationships, much talked about in our field, actually has a fighting chance if SRV is understood and used.⁵ SRV often appears to help practitioners, families, advocates, and everyday citizens see more keenly the experiences that people with disability have borne, identify more closely with such people, and work more fruitfully towards better futures.

A Gem of a Concept

One practical, powerful, and useful concept developed and described in SRV is the concept of the Culturally Valued Analogue (CVA), which is defined as a societal practice that is used with frequency, with which most people would be familiar, and most people would think well of.^6,7 This simply means that, whenever a strategy is required to support a person, a first and foremost question should be asked, “What happens for typical people with a valued status?”  If this question is asked and answered, the next question can be, “Can we start with that?”

A simple illustrative example is learning to ride a horse. When this seems like something someone served might be interested in, service workers often leap to offering therapeutic riding activities designed for groups of people with disability. They exist everywhere these days and are often free. However, SRV theory teaches to first ask the question about how horseback riding, or the role of horseback rider (to put it in role terms) happens for typical people. Well, there are many ways that typical people might do this, or enter this role – take riding lessons, find a friend who has a horse, take a guided trail ride, purchase a horse, lease a horse, join a program at a local riding stable- you will notice that none of these include getting horseback riding therapy. Yes, a person might need support and adaptations to ride a horse, and these can be provided while not straying too far from the natural pathways. And yet, it is much easier to pursue segregated, medicalized horseback riding, despite the fact that it relegates horseback riding, an enjoyable sport that is done for its own sake, as a means to fix or treat people. In fact, that is a good way to think about the CVA – it is exploring the natural pathways that already exist in society.

Program vs Home

For those who design and operate residential services, the CVA offers exceptional guidance in creating environments that are truly home. And that is a helpful thing to remember – the CVA for a residential program is, in fact, home. Home is an incredibly powerful driver of the quality and richness of life for most valued citizens, and that, in fact, many people exert a great deal of effort in creating for themselves. For many people with a disability, the loss of home has been one of innumerable losses, particularly for people who have been institutionalized, or who have been in the revolving door of mental health programs, where people cycle in and out of many different residential services, single-room occupancies, living on the streets, prison, and hospitals.

If planners and workers simply spend time discussing and laying out the qualities and characteristics of a valued home, one that most people would aspire to, yearn for and pursue, that is an excellent and worthy way to put the CVA to use as the basic foundation of what the service is providing. Adaptations can be made from there. These adaptations need to be made to account for individual needs, and this is a part of making the service relevant and tailored to each person who lives in the home. However, violations of the CVA should be monitored carefully, as service quality degradation can easily happen when the CVA is not guarded.

For example, practices which are put in place to protect the well-being of a person, such as locked areas, alarms, video monitoring, may be extended for years well past their purported need. Or the home may become full of indicators that this is a program, such as the open presence of files, instructive signs, medical devices, notebooks, staff offices, workplace notifications, and many more. It is always an excellent idea to walk through residential homes from outside to inside looking for any and all indicators that, in fact, this is a human service program rather than a home. Then, one can try to minimize these features. My colleague Darcy Elks has referred to these ‘service land’ feature as the “fingerprints of the organization,” and they are best avoided.  Use of the CVA calls into question many current practices popular in many human services, which clearly violate cultural norms, and should cause us to take up “studying the ordinary,” as my colleague Tom Doody says, as a good way to rethink some of these practices.

SRV remains, after over 40 years of experience in use here and there across the world, a powerful way to understand the experience of living with a devalued status within society and offers a rich collection of strategies which make good sense to help uplift people towards better lives. It is helpful in designing and structuring human services, as well as individually supporting people to live lives embedded in the best of community. Although Social Role Valorization concepts are not always easy to implement, it seems there are no shortcuts to building community around people and using what we know about how society behaves to benefit those who may need it most. Social Role Valorization, over the years, continues to provide such valuable guidance to those trying to do best by the people they serve, and truly functions as a gift that keeps giving.

References

1. Burns, Robert. The poetical works of Robert Burns. JB Lippincott & Company, 1868.

2. Wolfensberger,W. Social role valorization: A proposed new term for the principle of   normalization. Intellectual and developmental disabilities. 2011; 49.6: 435-440.

3. Osburn, J. An overview of social role valorization theory. The SRV Journal. 2006 1.1: 4-13.

4. O'Brien, J. Celebrating the genius of Wolf Wolfensberger. Research and Practice for Persons with Severe Disabilities.2011; 36.1-2: 76-79.
   

5. Lemay, R. Social role valorization insights into the social integration conundrum. Mental Retardation. 2006; 44.1: 1-12.

6. Wolfensberger, W. & Thomas, S.  PASSING: A tool for analyzing service quality according to Social Role Valorization criteria. Ratings manual. (3rd rev.ed.). Syracuse, NY: Syracuse University Training Institute for Human Service Planning, Leadership & Change Agentry.

7. Barken, Emma. "Almost, but not quite there: Failing to fully develop culturally valued analogues." The SRV Journal. 2010; 5.1: 14-20.

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.

___

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

1. Salzer MS, & Baron, R.C. Well Together – A blueprint for community inclusion: fundamental concepts, theoretical frameworks and evidence. Melbourne, Australia 2016.

2. Wolfensberger W. The principle of normalization and its implications to psychiatric services. American Journal of Psychiatry. 1970;127:291-297.

3. Nirje B. The normalization principle. In: Flynn R.J. NKE, ed. Normalization, social integration, and community services. Baltimore: University Park Press; 1980:31-50.

4. Wolfensberger W. The principle of normalization in human services. Toronto: National Institute on Mental Retardation; 1972.
5. Americans With Disabilities Act of 1990, Public Law No. 101-336; 42 USC 12211
6. United Nations. The convention on the rights of persons with disabilities. 2006.
7. World Health Organization. International Classification of Functioning, Disability and Health. Geneva 2001.
8. Marmot M, Allen J, Bell R, Bloomer E, Goldblatt P. WHO European review of social determinants of health and the health divide. The Lancet. 2012;380(9846):1011-1029.
9. Thorp A, Owen, N., Neuhaus, M., Dunstan, D. Sedentary Behaviors and Subsequent Health Outcomes in Adults. American Journal of Preventive Medicine. 2011;41(2).
10. Dolan P, Peasgood T, White M. Do we really know what makes us happy? A review of the economic literature on the factors associated with subjective well-being. Journal of Economic Psychology. 2008;29:94-122.
11. Wehmeyer ML. Self-determination as an educational outcome: Why is it important to children, youth and adults with disabilities? In: Wehmeyer DJSML, ed. Self-determination across the life span: Independence and choice for people with disabilities. Baltimore: Paul H. Brookes; 1996:15-34.
12. Perske R. The dignity of risk. In: Wolfensberger W, ed. Normalization: The principle of normalization in human services Toronto: National Institute on Mental Retardation; 1972:194-200.
13. Oliver M. The politics of disablement. London, UK: Basingstroke Macmillians; 1990.