1. Thursday Targeted Training: Inclusion Helping or Hovering
Patty Gould-Lucht, BCaBA
Bureau of Autism Services
April 3, 2014

3. Objective and Agenda
Objective - Consider ideas about inclusion and how to better incorporate it into everyday work with people you support in services.
Agenda
Background Info
Definitions
What it is
What it isn’t
Scenarios and Case Reviews

4. Background Info De-institionalization
Policymakers and scholars refer to the past years as a period of “deinstitutionalization” of the mentally ill.
The Americans with Disabilities Act, which is celebrated its’ 20th anniversary in 2010, was a major step in normalizing the idea of treatment in the “least restrictive environment” for people with both mental and physical disabilities. 
In 1999 Supreme Court decision mandated that state governments ensure that people who could be treated in the community would be provided with the services that could make them successful there. 

5. Community-base Support and Services
Community-based programs and homes were established to meet the needs of people in communities. They were charged with assessing and providing treatment for individual with his or her particular diagnoses, resources, and family and friend supports taken into account. 
(Samantha Reed, Roosevelt Institute, 2010)

6. What it is Being included and a part of a community means…
Having meaningful relations with community members
Contributing to the community
It requires being supported by services and agencies in such a way as to become
less dependent on those services and agencies and
more connected with people in one’s community including in home, community and work settings

7. What it isn’t Inclusion is not A set of rules
Presence in community only
A sub-group contained within the larger community
Simply places and activities in community – going to the mall, the movies, out to eat

8. Building Blocks to Inclusion
Physical
Social
Instructional
Wilson (2001)

9. Concepts like integration, normalization, quality of life and inclusion, are only vehicles (means) for change…they are the end (in themselves).
Bogdan and Taylor, (1999)
Rather, inclusion and being a part of the community is the end outcome.

10. Common/similar but individualized
While inclusion has common themes and tenets, it is different for each person.

11. BEING PART OF THE COMMUNITY CANNOT BE PACKAGED.
Just because an idea, model, or approach seems to work in one place at one time does not mean that it can work anywhere or at any time.
(Lyle O'Brien, O'Brien, & Mount, 1997).

12. Being in the community is not the same as being
part of the community
We moved people out of institutions but were not clear enough in distinguishing between "being in the community" and "being part of the community."
Being in the community points only to physical presence; being part of the community means having the opportunity to interact and form relationships with other community members. Today this is referred to as inclusion.
Inclusion requires individualized and creative approaches
Bogdan & Taylor (1999)

13. “From Community Presence to Sense of Place"
Pam Walker (1999) conducted qualitative study with seven adults with developmental disabilities
Purpose: to determine community places in which participants spend time, their community experiences based on framework of community presence versus sense of place.
The places in which people spend time provide a context for activities and interactions

14. Findings from study All participants spent significant time in places
designated for people with disabilities
Participants in the study spent very little time in private social worlds of others (excluding family)
Participants had limited social networks
If not in own home or at work, participants are in public places such as shopping malls, restaurants, libraries, city streets

15. Findings from study (continued)
Study participants spent most of their time in contexts characterized by business transactions (e.g., malls, grocery stores, drug stores, other shops and service offices)
Human service providers often place people in those settings (e.g., for recreation or job)
Study participants felt it was important to be in a setting with opportunities for social interaction

16. varies from person to person
The experience of “community” and “inclusion” :
varies from person to person
is complex and changing, and is comprised of both positive and negative experiences
can be viewed on a continuum from “community presence” to a “sense of place”

17. Presence alone…
Presence alone does not lead to a feeling of connection or belonging.
As support staff we cannot create friendships for the participants we support; however, we can help them go to places were friendships are more likely to happen (Perske, 1993)

18. Meaningful Community Participation
Exploring Interest within Social Context Development of Competencies Enhancement of self and social image Promotes valued social opportunities / roles and meaningful community involvement

19. A Quality Life Supported By Natural Supports For Social Inclusion
L. Lynn Stansberry Brusnahan, Ph.D. 
Associate Professor University of St. Thomas, Saint Paul, Minnesota 


20. Quality Life Supported By Natural Supports For Social Inclusion
Maslow’s hierarchy of needs – our need for social belonging comes right after our need for physical safety and survival.
For individuals with ASD, challenges in the areas of communication, perception and sensory processing contribute to difficulties in making social connections
Importance of Social Skills
Predictive of job success in adulthood
Associated with better mental health
Associated with a decrease in problematic behavior
On-going relationships help us understand others  

21. Importance of Friendship
Represent a significant & important role in most of our lives.
Developing & maintaining those relationships seems to come ‘natural’ for most of us, something we were born knowing how to do.
However, often friendship building is difficult for some.

22. The Importance of Building on a Person’s Strengths
Look for strengths and build social relationships around them.
Social Networking
Facebook
Twitter
Online chat groups
Blogs
Exercise/Work Out – Recreational
Walking, hiking, biking clubs
Zumba classes
Walk/jog with neighbor

23. Church/Places of Worship
Organized Groups
ASD support groups
Book / discussion groups at library
Other interest clubs via library, bookstores – knitting, poetry, computer classes
Hobby groups – interest in anima, trains, storm watchers
Church/Places of Worship
Look for small classes of adult education classes
Help person identify an area in which they are interested in e.g., clothing collection, preparing meals, choir etc
Classes
Music, art, digital imaging

24. Join a cause group: environmental interest - clean up parks or roads; election work, animal rights
If person has a dog
Go to dog park and model and teach talking to other dog owners

25. Help person get involved in any neighborhood activity – neighborhood yard sale, visiting elderly neighbor or neighbor that has a similar interest (e.g., cars, computer geek), neighborhood clean up day
Do simply things:
Sit out side house and say hello to neighbors that drive or walk by
Frequent the same store or coffee shop to purchase drink or coffee and say hello to clerks and others familiar people in the store

26. Inclusion at Work: Volunteer or Paid
Again, look at strengths, needs, abilities
In a work setting, besides supporting person to execute work task ALSO
Promote / teach skills related to social skills required at work
Saying hello to others when first coming into work
Sitting with others for breaks or lunch
Discuss and role play kinds of topics to talk about with co-workers
Provide support and fade presence in such settings as skills and comfort increase for person
Participating in work gatherings or teams (softball, bowling etc.)

27. As a person’s support staff, it is important/critical that we develop a good relationships with person.
However…
remember, that we want to help and support people to develop skills they will need when we are
not there by their side.

28. Inclusion involves change…
change in how we interact and support others
change in how we interact and converse with people in the community about the people we are supporting
change in how we model for others how best to involve and engage those we are supporting
change in how we listen to those we support
change to acting as an ambassadors of others
Inclusion involves asking the questions in each situation regarding how to better promote and increase person’s inclusion in home, community and work/volunteer settings.

29. Inclusion means Welcome
The three monsters of inclusion
1. Fear: Will I be able to do this? What if what I / we try doesn’t turn out as we wished?
2. Control: Can I give up the control? You don’t need to have all of the answers. You are on a team.
3. Change: Am I afraid of change? Change is inevitable; growth is optional. We recommend growth.
Article:
Inclusion! The Bigger Picture
by Marsha Forest & Jack Pearpoint
Inclusion Press International & The Marsha Forest Centre47 Indian Trail, Toronto, ON M6R 1Z8 Canada

30. Community Inclusion for Adults with Autism
2010 Community Inclusion Manual
Eastern Region ASERT at Lehigh University and
Community Adult Autism Partnership
Program at Devereux CARES
This document was developed through t
he Eastern Region
Autism Service,
Education, Research, and Training (ASERT)
Center funded by a grant from the PA
Department of Public Welfare’s Bureau of Autism Services
Can be found on BAS VTC under:

31. Guiding Principles of Community Inclusion Manual
Principles that have guided approach to supporting individuals with
autism spectrum disorders (ASD) to be involved in their communities
and work in inclusive settings.
Supports and services are driven and guided by the individual and the family
Supports and services promote self-determination and self-advocacy
Supports and services are individualized
Supports and services are provided to participate in every aspect of socio-cultural life
Supports and services are based on a philosophy of acceptance
Supports and services are respectful and age-appropriate
Supports and services are designed to promote the full inclusion of individuals in their communities
Supports and services promote independence and foster interdependence on naturally occurring supports in the individual’s environments
Supports and services are culturally responsive
Supports and services are provided with integrity and quality

32. Research Studies on Relationships
Six properties of supportive relationships identified by individuals with autism:
1. Trust
2. Intimate Connection
3. Shared vision of independence
4. Presumption of competence
5. Understanding
6. Communication
Effective support was dependent on quality of relationship
Robbedo and Donnellan (2008)

33. Understanding our Role and Responsibility as Direct Support Professionals

34. Helping person learn needed skills to forge relationships, make connections in community and secure involvement and opportunities that increase inclusion.
Strategizing and planning with person regarding where, what and with whom they want to pursue desired engagements.
Encouraging and applauding attempts and successes in making connections, becoming more involved.

36. Helping vs. Hovering HELPING HOVERING
Asking and discussing with person their schedule for the day.
Teaching and practicing greeting and conversation skills for person to use when applying to volunteer at local library.
Deciding and planning the day’s schedule
Greeting and initiating conversation with library staff regarding volunteer opportunities.

37. Helping vs. Hovering HELPING HOVERING
Helping person find contact name for walking club in town and supporting them as they make the call.
Helping person contact a acquaintance to ask if they want to go to Rita’s for a water ice.
Making the call to the contact person of local walking club.
Making the call to acquaintance or taking the person yourself to Rita’s.

38. Helping vs. Hovering HELPING HOVERING
Helping person invite people over to eat pizza and play x-box on Friday night.
Helping person find and contact companies that use interns for digital imaging and/or computer entry of data.
Calling parents of friends (or asking mother to make call) to invite others over.
Doing all of the research without input and involvement of person. Calling company and asking if they hire people with disabilities.

39. Helping vs. Hovering HELPING HOVERING
Accompany person to ASD support group and adjusting the proximity of where you sit as they become more familiar with attending.
Accompany person to ASD support group – introducing yourself and person to others and always sitting next to them during meeting and time of snack and socializing.

40. Case Study - Employment/Volunteer
Jared has no employment portfolio. Through convo with him and others who know him well (his mother and sister) and through information obtained through an interest inventory, it was discovered that Jared likes to play computer games, remembers and knows a lot of facts about baseball and baseball history and he enjoys watching weather patterns and considers himself a ‘weather fanatic’. Jared prefers routine and when it is altered or changed, he may become very angry and refuse to engage at all. Since family computer broke a month ago, he has not been able to play computer games or follow the weather. He has become increasingly frustrated and upset since he has no access to computer.
Jared’s and his team have been thinking about options for him with regards to employment or volunteer work.

41. Options
Look into working at Goodwill Industries as they currently have openings and it is not far from his house.
Look into working at the minor league baseball stadium where volunteers are used to hand out game programs.
Attend a Club House where he could socialize with others, be able to spend some time on a computer and through groups that the Club House runs, he could learn to express himself and learn coping skills.
Follow-up with his uncle who mentioned to him that the TV station where he works hires interns and part-time people to work at the station collecting weather data for use by the weatherman.

42. Rate options for inclusion / match for Jared
Integrated vs. segregated setting
Match to his interest
Working at Goodwill Industries
Volunteer at the minor league baseball stadium handing out game programs
Attend Club House to socialize, use computer and learn coping and communication skills
Work at TV station collecting weather data

43. Case Study – Exercise Activity
Since she graduated from school 4 years ago, Carmen has spent much of her time at home – particularly in her bedroom, watching TV, listen to music and re-organizing her many photos. When she was in high school, she participated in the Buddy Program (matched with a local college student) and also participated in Special Olympics bowling (where she won highest scorer for 3 years in and row) and bocce where her team came in 3 place 1 time.
Carmen has recently been enrolled in services and she and her team are discussing activities that she can now pursue.

44. Options Join a local gym Join a neighborhood summer league bocce team.
Join a special needs bowling bowling team through her church
Join a women’s bowling team at local bowling alley.

45. Rate options for inclusion / match for Carmen
Integrated vs. segregated setting
Match to her interest
Join a gym
Join a neighborhood summer league bocce team
Join special needs bowling team through her church
Join a women’s bowling team at local bowling alley

46. Scenario
You are in a restaurant with Kevin, a person you are supporting. Waitress comes by for your order and after taking your order, the waitress asked you what ‘your friend would like’.
You can:
So as to avoid any awkwardness, you ask Kevin what he would like and repeat it to the waitress.
You state you are not sure what Kevin would like and state, “Kevin, do you want to tell the waitress what you want to eat’?
You use a non-verbal hand gesture cue to waitress indicating that she ask Kevin.

47. Scenario
The person you support (Emily) has a goal to increase social interact with others outside of family.
For the past 3 months, previous staff have reported that Emily is doing well with this goal. She has interacted with at least 1 person each time staff has taken her out to the mall, movies or to do her laundry at the laundry mat.
You are a new staff person working with Emily and you and she have talked about her making friends and increasing her opportunities for inclusion. You can:
Take her to First Friday each month where there will be more people with whom she may talk.
Help her inquire about the young adult group meeting at her church 1 Friday night a month.
Explore blogs and social groups that meet to discuss ‘Saving the Bay’.

48. Additional Resources BAS Virtual Training Center (VTC)
Encouraging Inclusion
Social Role:
O’Brien, J. (2006). Reflecting on Social Roles: Identifying Opportunities to Support Personal Freedom and Social Integration.

49. Inclusion Network http://www.inclusion.com/inclusion.html
The Hidden Curriculum