Call Me Al Podcast - Episode 5 - Joyce Steel

Al sits down with Joyce Steel Director of Family Advocacy at Starbridge Inc. supporting families in Rochester, New York. Joyce talks about her development as an advocate for inclusion that started with the birth of her son Adam. Al and Joyce talk about her work as an advocate and mother, what kinds of things are working, where are the challenges, and what new things lay ahead.

For more interviews subscribe to the Call Me Podcast on itunes: https://itunes.apple.com/us/podcast/call-me-al/id1441852995

Call Me Al Podcast - Episode 4 - Betty Batt, Sylvia Doane, Jane Huff, and Aga Karst

In this episode, Al Condeluci sits down Betty Batt, Sylvia Doane, Jane Huff, and Aga Karst the authors of "I'm the Bob & Cathy's Kid: Emotions, Love, and Fury (https://www.imthebobandcathyskid.com/). This book tells the story of Suzanne Bailey and how her community, family and support staff rallied around her to help her to stay in her community. The authors worked directly with Suzy and her family and share their struggles and success in helping her to gain interdependence in the community. 

Subscribe to our the Call Me Al Podcast thru itunes and get the latest Call Me Al news and updates.

Neighbors - A Measure of Engagement

The holidays are now behind us and if you are like me you probably had opportunity to visit with neighbors and friends in either your or their homes.  These patterns, certainly accelerated during the holidays, got me to thinking about the notion of neighbors and community engagement.

Sociologists, most notably Harvard's Robert Putnam, have examined neighbor relations to ascertain how engaged people might be, and in the extensive Saguaro Seminar reported their findings.  The Harvard team interviewed over 30,000 Americans and asked a number of questions including ones like: "How many neighbors names do you know," or "Have you ever been in a neighbors home," or "Have you ever had a neighbor in your home."  They discovered that the more engaged people had stronger relationships with neighbors.

To this end, I wonder how your neighbor relations are?  Do you know your neighbor's names - or more, have you ever been in a neighbor's home, or had them in your home?  These simple notions are important in understanding social capital and community engagement. More, maybe you can make more effort to get to know your neighbors.  These efforts, according to Robert Putnam and other sociologists, enhance our culture and help build a better community.

What Type of Community is Your Organization Creating?

Organizations that are the most successful in supporting individuals in the community have the organization community connections, systems, resources, and organizational knowledge in place. Staff at theses organizations understand the core values, and know that all of there activities are focused on the overall goal of providing people with the opportunities to get connected to his or her community. 

In our work, we have identified 6 key domains for change that organizations should consider when examining their organizations commitment to building an inclusive community.  These domains include:

  1. Values
  2. Leadership 
  3. Organizational Social Capital
  4. Monitoring & Evaluation
  5. Advocacy
  6. Programs

Check out this organizational self-assessment to learn what type of community your organization is creating.

 

October 9, 2015 South Florida Symposium!

On October 9, 2015 in Boca Raton, FL the Interdependence Network and the Unicorn Children's Foundation is conducting a symposium to look closely at the power and potency of social capital and community engagement for people with disabilities.

The Symposium is being held at Mizner Park Cultural Arts Center (201 Plaza Real Boca Raton, FL 33432). It will start at 9:00, with a continental breakfast being served at 8:30am. Lunch is included. 

This symposium will be unlike the usual conferences you attend.  We will be debating, discussing and creating interactive strategies and actions.  You will leave this symposium with a personal blueprint for action in your community.  

A limited number of scholarships for parents and self advocates are available. Please email us at info@buildingsocialcapital.org to see if you qualify. 


FOR A SNEAK PREVIEW OF THE WORKSHOP CHECK OUT AL'S TedXPITTSBURGH TALK 


Building Skills in Self Direction with David Isitt

A resource to support service providers in building skills and knowledge in the area of self direction. In this video, we see service providers working on the ground with people and management staff giving their reflections on a self directed model of service. More formal concepts and philosophies are provided to assist in understanding how services can move to a model of self direction.

 


Defining Culture

Culture is the learned and shared way that communities do particular things.

Often when you think about community, the notion of culture is introduced. The term “culture” is dependent on community, as culture relates more to the behaviours manifested by the community. People bound together around a common cause create a community, and the minute they begin to establish behaviours around their common cause, they develop a culture. Culture is the learned and shared way that communities do particular things.

This basic approach to community and culture blends three features. One is the fact that community is a network of people and, often, these people may have great differences or even distances (diversity) between them. They can be different in age, background, ethnicity, religion, or many other ways, but in spite of their differences, their commonality or common cause pulls them together. The similarity of the common cause or celebration (commonality) is the second key feature of community and the glue that creates the network. Regardless of who the members of the network are as people, their common cause overrides whatever differences they may have and creates a powerful connection.

Finally, as the collection of people continues to meet and celebrate on a regular basis (regularly) they begin to frame behaviors and patterns and become a culture, the third key ingredient. These regular meetings bond the community members as they discover other ways that they are similar.

Defining Community

Community is defined as a network of people who regularly come together for some common cause or celebration

Community is defined as “a network of people who regularly come together for some common cause or celebration (Condeluci, 2002).” A community is not necessarily geographic, although geography can define certain communities. To come to an understanding of community is to appreciate that community is based on the relationships that form, not on the space utilized. In fact, space can be an abstract notion when it comes to understanding community. Think about the global community created by the Internet. These communities are not bound by geography, but rather are relationships formed in cyberspace.

The term “community” is the blending of the prefix “com,” which means “with,” and the root word “unity,” which means togetherness and connectedness. The notion of being ‘with unity” is a good way to think about the concept of community. When people come together for the sake of a unified position of theme, you have community.

Think now about communities in your life. All of us have a number of groups that meet the definition of community. Our families, for example, are a good framework for understanding community. These are people with whom we spend a great deal of time on common themes.

To help us just a bit more in understanding community, consider another definition of community from Robert Bellah (1985): “A community is a group of people who are socially interdependent, who participate together in discussion and production, and who share certain practices that both define the community and are nurtured by it.” Both of these definitions give us a solid start in thinking about communities in our lives.

Using the definitions of community, spend some time now identifying these groups in your life. 

Newsletter Winter 2014

The Interdependence Network (IN) is a collaborative, membership based advocacy group created by disability-based human service organizations from around the United States, Canada and Australia. Our purpose is to promote the full inclusion of people with disabilities in the community.  We do this by:

  1. Fostering the development of new approaches to human-service programs that focus on facilitating community engagement and the building of social capital for people with disabilities as a primary outcome.
  2. Providing professional development opportunities to human service agencies focused on helping them implement an organizational culture that values and supports meaningful community inclusion.
  3. Developing a program evaluation protocol to track social capital related outcomes.
  4. Disseminating information, research findings, and resources to the greater rehabilitation community, including people with disabilities and their families.
  5. Educating the business and nonhuman-service related community on how to be welcoming of people with disabilities. 

The Interdependence Network’s founding organizations include:

  1. Community Living and Support Services, Pittsburgh, Pennsylvania
  2. Community Living Mississauga, Ontario, Canada
  3. communityworks, inc, Overland Park, Kansas
  4. Connect Communities, Vancouver, British Columbia, Canada
  5. Hope Services, San Jose, California
  6. John F. Murphy Homes, Auburn, Maine
  7. Mamre Association, Brisbane, Australia

Our tips and strategies have been developed for those adults and children with disabilities who want to be more engaged in the community. A number of our tools are available for free download on the buildingsocialcapital.org website (http://buildingsocialcapital.org/toolbox/). Including:
 
1. Community Engagement Planning Tool
This tool is designed for parents, self-advocates and direct support staff. It is used to create a community engagement plan for a person with disabilities.
 
2. Tips on Getting Involved in the Community 
This fact sheet provides an overview of the important steps involved in helping a person or child get involved in community-based activities. It reviews the 4-step process of community engagement.
 
3. Evaluating Community Venues
Supporting people to connect with others in the community begins with finding the right venue. This tip sheet offers suggestions on how to find places in the community that offer the best opportunities to build social capital.
 
4. Community Membership Scale
This tool helps staff and families evaluate current community engagement and offers steps toward increasing inclusivity. 
 
These tools have been developed and used at our member agencies. All of the strategies promote our commonality, not our differences. They are grounded in the values of person centered planning and individual choice in decision making.  Our approach does not concentrate on trying to fix or change the person with the disability. Instead, the focus is on helping individuals gain independence by developing and maintaining meaningful social relationships and social capital, based on the person’s interests and passions. Indeed, relationship-building is a central tenant of this approach and is just as important for well-being as traditional rehabilitation. Do you still have questions about why social capital is so important? Click here to read more about social capital and why it is a key ingredient in meaningful community inclusion: http://buildingsocialcapital.org/about-social-capital/.
 
In addition to the above, our buildingsocialcapital.org website also has a variety of additional free resources to help you and your organization, including:

  1. Videos featuring, IN founder and lead organizer Al Condeluci discussing the importance of social capital.
  2. White Papers on community inclusion and civic engagement from leaders in the rehabilitation community.
  3. The View from the Field Blog, a forum for discussion and dialogue on strategies to help people with disabilities get more engaged in the community and to begin building more social capital.  
  4. Speaker’s Bureau with information on speakers who can provide professional development training for your organization’s staff, management, and Board of Directors.

 
The IN has been hosting a series of regional symposiums on social capital and civic engagement. Following Ancient Greek tradition, the IN symposiums are unlike other conferences. They gather like-minded people who come to debate, plot, boast, and discuss the actions and directions we can take to help people with disabilities enhance their engagement in the community and to build social capital. Participants walk away from the symposium with a personal blueprint for action in their community. In 2014 we held symposiums in:

  • Toronto, Ontario
  • Kansas City, Kansas
  • San Jose, California
  • Brisbane, Australia 

In 2015 and 2016, symposiums are being planned for:

  • Vancouver, British Columbia
  • Portland, Maine
  • Ft. Lauderdale, Florida
  • Pittsburgh, Pennsylvania
  • Shippensburg, Pennsylvania

 
Please check our website for upcoming dates and locations in your area (http://buildingsocialcapital.org/symposiums/).
 
Are you interested in community inclusion and want to get involved in our effort? We are building a catalogue of tools and resources developed by and for human service agencies that support a person-centered, function-based approach to community engagement.  Please contact us today, at info@buildingsocialcapital.org if you are interested in sharing your community inclusion strategies and success stories with us. 

DOING IT THE NATURAL WAY

“People who live in isolation are more likely to die than someone who was well connected to lots of people and smoked heavily.” Darcy Elks, Melbourne 2010.

Isolation is one of the most profound problems of our lives and more often than not it falls beneath general society’s radar. We meet roughly 200 people before we click with 1, so as person who is socially disadvantaged that number of people you may need to meet could double. Makes you think how hard we all must try to help people in our lives to have proper relationships that then could lead to friendship.

We probably take making friends for granted and forget why they are so important, think about how many great relationships you have and then imagine life without ever meeting that person! Pretty tough i imagine, it certainly was for me.

Having a variety of good relationships is all part of “living a good life” and opens up all sorts of opportunities. Getting a job, for instance is a lot easier, as the old adage goes, ITS NOT WHAT YOU KNOW BUT WHO YOU KNOW.

Relationships can help people with emotional and physical safety and nurture self esteem, and as we know “people keep people safe”.

We all understand that relationships and friendships are very important to us all regardless of our abilities but what help could we be to someone who finds making new friends more difficult.

We have to understand that some approaches don’t always work, if a person has an intellectual disability does that mean that they will be friends with everyone in the day facility they find themselves in, of course not. I’m a Pom and i don’t like all Poms.

We need to bring people together naturally, find people with the same interests, beliefs and concerns. All people have gifts to offer and if you can meet people in a typical way, if then a relationship forms then it is better for all involved.

Recruitment of volunteers to be friends is not a positive approach to long term friendship or offering reward for being a “friend”. We need to identify a natural pathway and assist people to walk along it, taking the ups and downs as they come. Protecting someone who is vulnerable all the time won’t help in the long term, as we know life is sometimes hard and not ever seeing that wouldn’t make the good times seem so much better. All relationships are risky as many people know, the divorce rate speaks for itself but if you have lots of them then the ones that fall by the way side are replaced by stronger ones, we hope.

In identifying natural pathways, i feel that “One person-One place has the most promise. Being in a group as an individual may be a better avenue for nurturing natural and meaningful relationships. It will give the person more ability to shine and show off their strengths and talents. It is also an opportunity to meet others with similar interests and contribute within a valued social role.

A valued role creates a positive image and conveys to all that you have a place in society and others will see you in a positive way which can only be a good thing when trying to engage in new friendships. Having a negative role or perception only furthers other people’s beliefs, rightly or wrongly that a person who needs a little more effort to start a relationship might just fall into the too hard basket.

Encouraging people to seek out like minded others is a great way to start on building a natural relationship, but remember we are not there to invent new passions, just help the person build on what has been there all the time. Finding new interests is an added bonus on the journey and finding new people to help walk down the path is very important as long as they arrive there naturally.

Francis Bacon once wrote” THE WORST SOLITUDE IS TO BE DESTITUTE OF SINCERE FRIENDSHIP” 

 

Ian Hulse.                                                                                                                                   Mamre Association, Inc.                                                                                                     Brisbane, Australia

We must protect them from…[fill in the blank].

The following post was written by Jim Karpe a father, coach and advocate for people with disabilities in the New York City Area. 

We must protect them from…[fill in the blank]. For example, failure.  “We must protect these special needs children from failure—it will harm their self esteem.”  Sound familiar?  Coach Gary and I brought one of our NYC Special Needs soccer teams out to California for the National Games, to play against other special needs teams.  And we got some surprises.  We had expected to mow down the competition.  Instead, we turned out to be the grass, not the lawn-mower.

 First, a confession of dis-loyalty:  I also coach Baseball.  And I drill into my teams and parents "Baseball is about failure and redemption.  You are going to strike out, and then later you are going to get another chance."

 Turns out to be true of soccer as well.  On July 3rd, we played tough games against competitors who out-weighed us and out-skilled us.  In one game, our teen-agers were completely out-matched by a crew of young men in their twenties and thirties.  Yes, they were special needs, but they also had, on average, a physical advantage of six inches and 70 pounds.  And the carnage continued on July 4th.  The Alhambra Phoenixes out-ran and out-scored us, even though we got an assist from the star mid-fielder of Montebello "Sharline the Machine".  We made her an honorary NY Skyline team-mate-- she's the one in the red socks.  She has excellent ball-handling skills, and got the ball down-field for us.  But despite that, we still could not manage to finish it off, and once again were out-scored.  Those are some of the triumphant Phoenixes off to the left.

 We lost again.  But played better than ever, with more coordinated team-work than ever-- more passing, more running down the field to help out a team-mate.

 In our final game of the tournament, against Grenada Hills, it all came together.  Everyone was involved, and everyone brought their "A" game.  Gabby (#4) put on the after-burners.  In the second half she put up three goals.  Sean(#2)  put up a couple of goals, despite persistent (un-called) holding fouls from Grenada  #10.  

AJ (#11) and Eli (#7 playing now in white NY t-shirt) ran and created passing opportunities which led directly to scores by Gabby and Sean.  

Amanda (orange goalie shirt) did her usual excellent job as goalie, but with additional skills-- keeping her feet together to prevent the nutmeg-- and with more defensive assistance from Sandy and Angelica.  The old Angelica (#8) came back to us, upping her pace from "saunter" to "merciless charge".  Sandy (#3) intercepted the attackers on several vital occasions:  Assessing the situation, timing her move and turning the ball back over to NY Skyline.  It was a great game.  Against a roughly equal opponent.  Final score, seven to seven.  But only roughly equal because our kids were putting in extra effort after facing-off against fierce competitors over the prior three games.  

Failure plus effort leads to redemption.  A familiar formula in sports, but often considered out-of-reach for special-needs players.  All of us-- parents, coaches, buddies, on-lookers-- often feel that we need to protect them from the sharp jagged edges of reality, of failure.  For example, the convention in VIP soccer is to not keep score.  Unfortunately, in our zeal to protect, we cut off the opportunity to go through the rest of the arc.  Failure comes first, motivating extra effort.  And then redemption.

It was not the National Games we expected to have.  Nothing close to what we planned. And it worked out great.

WHAT NEXT?

What does this mean for our soccer program?  It is not that we will start arranging for all of our players to experience failure on regularly scheduled basis.  As with so much of life, there is a balance to be struck.  One size does not fit all, especially in the world of special needs.  But for the parents and coaches of West Side Soccer League VIP, the experience in California has re-calibrated our thinking about the balance between protection and exposure.  

So what will happen is a little more failure, a bit more exposure to the jagged edges.  And consequently a lot more opportunity to experience the self-motivated change which leads to greater achievement.  On the field, and off.  

"He just likes to be alone...”

We’ve all heard it on our journey to promote social capital.  “He just likes to be alone.” “She pushes all her friends away.”  Promoting social capital is challenging and sometimes we get stumped.  Often, it’s those who have Autism or are dually diagnosed with a mental illness.  One diagnosis we have found particularly challenging is Borderline Personality disorder.  Relational trauma and a lack of secure attachment early in life often drive this diagnosis, so relationships can pose a threat.  That’s why I was particularly inspired by this story.

My daughter was working on a homework assignment when she found the video.  She knows I enjoy all kinds of art, and this was a medium neither of us had seen before:  light art photography. I was intrigued and captivated not only by the art, but how the video told the greater story of this man’s life.  Finding his passion had been a pivotal, defining moment for him, but even greater was finding a community of like-minded folks with whom to share his passion.  One approach the Interdependence Network has explored for building relationships is the 4-step process of 1) identifying a passion, 2) discovering where it’s celebrated in the community, 3) connecting with the gatekeeper in the group, and 4) joining the group.  The twist in this story is that the group was online.  Following a different path toward the same goal, Christopher’s art became the gatekeeper, the commonality that overrode the differences and created connection.  Of the group his says, “I posted my first pictures to Flickr and almost immediately someone from the light junkies group invited me to the group.  And I discovered this amazing community.  They nourished and encouraged and I wouldn’t be here and gotten this far without them and their support.”

As we continue to support people to grow and develop new relationships, I think this story is a great reminder of how powerfully they can impact a life.  I also think it illustrates the need for creativity.  Online communities have their risks, but in this case it met the need for connection without the challenges that face-to-face relationships can pose.  I hope you feel inspired as I did when you watch this beautiful video:  https://www.youtube.com/watch?v=irAXgWjr2Uo

The 2014 San Jose Symposium Report

A big thanks to Cathy Bouchard, Rex Zimmerman and the whole Hope Services crew in San Jose for hosting our latest symposium on April 4, 2014 in San Jose California. Over 50 people participated in lively discussion and debate, and it was one of the best symposiums to date.

The challenge of self-determination, consumer satisfaction and community inclusion is front and center with most human service organizations today. Individuals and organizations have realized that the traditional public and private methodologies have not led way to the inclusive opportunities that are wanted. Consequently, new approaches must be sought and developed.

Interdependence is a concept that reframes the structure around human services. It is an approach that focuses on assets and looks to build partnerships and consensus. It suggests that the realities that surround people who use human services are often not the issues that services must be framed around. Rather, Interdependence appeals more to the realities of relationships and the basics of human values that we all crave as members of groups within our greater culture.

The concept of Interdependence uses a macro perspective that demands we understand culture, community and social capital. Using the metaphor of a bridge, we can better understand why people with differences remain in separate, offset places. Although a person’s difference might separate them from others, it is the passions, capacities and similarities of people that can create the foundation to build the bridge back to community. On the other side of this bridge is the community, with all of its customs, rituals and structure.

In order to be successful, we must look at community and how relationships are built. We define community as a “network of different people, who come together regularly, for something in common.” This definition helps us understand that building relationships is a process and as support people we can facilitate this process. The 4 key steps in the process are:

 Al explaining the importance of our social capital. 

Al explaining the importance of our social capital. 

1. Identify the passions, interests, hobbies, and avocations of the person. (Find their similarity)

2. Find a community or group that meets around the same commonality you found in the person you support. (explore www.meetup.com)

3. Study, observe or discover the key behaviors that are expected in this group. (So you might coach or prepare the person for what is expected)

4. Find a “gatekeeper” or influential member already in the group and ask them to introduce your client to the others. (So that their value spreads to your client)

It is important to appreciate the influence of these four steps. They create the process necessary for people to begin to develop social capital. The more time people spend and the more similarity they exchange, the greater the chances that a relationship will unfold. More forward thinking individuals and groups are beginning to embrace and utilize the component parts of Interdependence to not only approach human service needs, but to build the very fabric of their communities. Such was the activity recently supported by the Milbank Foundation for Rehabilitation at the Interdependence Network Symposium at the Sobrato Center for Nonprofits in San Jose California.

 

SOCIAL CAPITAL AND COMMUNITY ENGAGEMENT: IDENTIFYING STRATEGIES

Should Do

The first task was to become clear on what we should (vision building) do individuallyand collectively to build opportunities for all people to be more active in the community.Using an interactive, nominal process the groups identified many strategies that they should do:

 David helping his group brainstorm.

David helping his group brainstorm.

1.    Lead by example

2.     ncrease training opportunities

3.    Foster valued roles within community environment

4.    Smile…positive 1st interaction

5.    Support individuals as individuals

6.    Help person identify value and foster it

7.    Improve transportation options

8.    Listen more

9.    Taking advantage of tech/social media to encourage inclusion in community

10.  Assess your own social capital

11.  Measure/Assess social capital as part of IPP process, include in goals

12.  Close group homes and sheltered workshops

13.  Get more funding to meet individual needs

14.  Educate the community

15.  Change intake process to better understand and serve

 Jamie's group identifying strageties

Jamie's group identifying strageties

16.  Volunteer my own time to support social capital building for individuals

17.  Reintroduce to neighbors

18.  List natural supports & resources in each person’s communities

19.  Think creatively about how to expand natural supports

20.  Always consider quality of life “Is this good enough for me”

21.  Use person centered tools

22.  Staff actively recruit gatekeepers

23.  Help people identify their interests

24.  Research & ID community resources

25.  Find people with common interests

26.  Get staff active in local communities

27.  Make a community map for each person

28.  Involve families

29.  Think more macro then micro

30.  Develop more partnerships/relationships with community members

 Creating a blueprint for change

Creating a blueprint for change

31.  Staff and ability to take individuals out for one on ones based on interests

32.  Clients having a voice in the activities

33.  Employing staff  that want to be there

34.  Assist clients in volunteering in community

35.   Intentional creation of natural supports

36.  Think about transportation

37.  Increase visibility and exposure meaningful way

38.  Increase employment options for people

39.  Be person centered when developing new programs

40.  Share success stories

41.  Nurture concept of value add of people with disabilities to community

42.  Help people meet their neighbors

43.  Releasing own agenda

44.  Be engaged in the community and get to know what’s happening

45.  Help people get contact information from people they have similar interests with

46.  Bridge the gap and fade out the support to encourage the relationships to build

47.  Support staff to be involved and contribute in systems change

48.  Train staff to help prepare folks to engage in community successfully


Could Do

The next step was to reconvene and the same work groups converted their list of "shoulds" into ones they could actually do. This conversion created a new list of "coulds". This new list included real actions that group members think they can actually do in their daily life.

1.    Develop more partnerships/relationships with community memberships

2.    Staff training and education

3.    Get families involved to find out what the client needs for support

4.    Asking clients and staff for feedback on ideas

5.    Connect HOPE with Project Cornerstone

6.    Be person centered when developing new programs

7.    Nurture concept of value add for individuals with disabilities contributing to community

8.    Bridge the gap and fade out the support to encourage the relationships to build

9.    No bad ideas and don’t be afraid to fail

10.  Dig deep to find out what is important to people

11.  Introduce people to neighbors

12.  Train staff how to connect people with disabilities with their co-workers

13.  Encourage people to join service clubs

14.  Increase volunteer opportunities and opportunities for involvement with universities

15.  Find 3rd places – regularly engage in these activities

16.  Try Meetup.com to find out about community activities

17.  Lead by example,  listen & smile

18.  Hiring practices to focus on better matches to support individuals (& CEU options/trainings)

19.  Collaborate cab company that supports  service to community and transportation for individuals that incorporates a valued role within service

20.  Create community connections both with in the community and settings and site based programs were access may be limited or challenging

21.  Educate the community (not to be scared, but rather to understand needs, differences, and similarities

22.  Volunteer my own time to support building social capital and community inclusion

23.  List and understand “natural support” in each persons community and think creatively about how to expand them

24.  Always consider “quality of life” issues and “is it good enough for me? Never forget the client

25.  Train staff to help prepare folks to engage in the community successfully

It was exciting to see the similarity and diversity of opinion on this issue. One theme was abundantly clear, if we are to build a culture that truly finds opportunity for community inclusion, we must change some of our current behaviors.


THE PATH FORWARD

Change is never easy. People and organizations have a propensity to keep the status quo, reject new ideas and continue the course, even if it does not solve the problem. Yet to stay the same is to stagnate.

What you have just read is the fuel for change–the raw material of growth. The strategies listed offer us a map to a new place–one that is at higher ground, further evolved. Know, however, that the achievement of some of these solutions will not come easy. They require a conscious and direct effort. They also require that individuals and organizations have a warm and hospitable core.

Either way, we must step forward to address these issues. Rarely do people realize the opportunity we have to touch lives and, in turn, impact our culture. How fortunate we are–yet how serious the task. Thanks for all that you do and best of luck in continuing to build a community where each belongs.

Thoughts From a Parent

[This post comes from Joanna, a parent, who attended the IN Symposium in San Jose on April 4. She raises some great questions  that everyone who works with children with disabilities should consider]

Friday's symposium has been heavy on my mind and had a thought that I wanted to float before you to see what your thoughts were.  While I realize that the social capital discussion was for all developmentally disabled folks, I can't help but think individuals with autism who are aging out of the educational umbrella and how important social connections are and how difficult it can be for individuals on the spectrum.  I know for my son, early learning and repetitive exercising of skills learned are the only way he "owns" an ability.  I wish that when we began our years of ABA therapy, speech and language therapy and social skills groups that social capital was explored in a meaningful way (involving lots of the "shoulds and coulds" that were presented on Friday.

I feel that social capital is an integral piece of the puzzle that signifies success in all adult area's of a developmentally disabled person's life and that if we were to involve the various Behavioral Therapy companies (ELCA, I Can Too, etc) and encourage them to "teach" the younger individuals with disabilities AND the family on discovering and nurturing the "natural supports" that already exist for a youngster on the spectrum, the greater the chances are as an adult to utilize that skill set.  For many families with children on the spectrum, our front line of defense is usually our ABA therapist, speech and language therapist and occupational therapists.  It only makes sense that we enlist their support in helping us create that social capital between the typicals and the not so typicals.

It has been my experience that many families isolate themselves or are isolated by others once they receive the diagnosis and so it can be very difficult to "put yourself and your child" out there for fear of non acceptance, ridicule, ignorance.  Simply put, we as parents are too close to the subject at hand.  If we were to have the assistance and expertise by our ABA and other therapists we might be more willing to continue to try to utilize our community as our "village". 

Just as Friday's symposium was presented more for the gatekeepers of adults with developmental disabilities and their social connections, it might be equally important to involve the early childhood therapists in understanding and creating curriculum to implement social capital at a early age. Would there ever be opportunities to present or discuss with the various early childhood therapists and educators on the importance of social capital and how they can be a rich resource in teaching those skills and involving a families natural resources?

Thanks for your consideration!  Just some random thoughts I had early this morning!

Interdependence in Action: A New Focus for Old Programs

John F. Murphy Homes, Inc.

Supporting individuals with intellectual and developmental disabilities and Autism has been the mission of John F. Murphy Homes, Inc. (JFM) for more than 33 years.  Priding themselves in delivering progressive services, JFM has developed a niche for providing safety and security to those who struggle with significant behavioral challenges.  For a decade, its services focused on keeping people busy with leisure or lower level “work” activities and behavior modification interventions, for those who needed it.  Helping people connect with each other and the community was not the primary goal.

More recently, however, JFM’s services have begun to shift from providing stability, to helping people thrive. This was the first step for the organization in taking a long, hard look at its services.  How would it need to change the way it does things so that the people supported could make better and deeper connections?  What information and skills did staff need to obtain?  Were there ways JFM could modify the planning process to help create the outcomes they desired?  Learning how to support people to move beyond very real barriers toward authentic engagement with the community became its mission.

Taking from new developments in Positive Psychology and Neuroscience and older theories like Maslow’s Hierarchy of needs, JFM began to take a very holistic approach to social capital.  They realized that a great many of the people supported had had difficult and often traumatic experiences.  These have led not only to behavioral challenges, but difficulties with developing relationships as well.  JFM began to look at how it could help shore up peoples’ physical, emotional, social and spiritual foundations to increase their capacity for relationship building. 

JFM’s first step was to look at sleep, nutrition and exercise.  Is each person getting 6-8 hours of good sleep a night and, if not, what types of support might be needed to achieve that?  Are they eating a variety of brightly colored fruits and vegetables to improve their nutrition?  Does everyone get outside in the sunshine for at least 30 minutes of healthy activity each day?  These three areas provide an important foundation for good physical and mental health. 

The next step was to assess whether a person has the skills to self-soothe when a situation becomes stressful.  The traumatic experiences that many people with disabilities have experienced have sensitized them to stress, making them more likely to over-react or withdraw.  Daily exercises in relaxation and mindfulness help increase the ability to maintain emotional balance—a prerequisite for developing and maintaining positive relationships.  Gratitude journals help teach the skill of focusing on the positive and the things that are good and enjoyable, counteracting the brain’s propensity to focus on the negative.  Providing these types of trauma sensitive interventions teach positive coping skills and widen the door of relational opportunity.

JFM’s third step utilizes the VIA Character Strength assessment (www.authentichappiness.com) to determine a person’s top five character strengths.  This assessment is lengthy and not every person will have the attention span or the intellectual skills to  comprehend all of the questions in the assessment.  In these circumstances, the Person Centered Planning Team assists by reviewing the list of 24 strengths and determining together which strengths best describe the person.  Determining each person’s character strengths has had a profound effect on the planning process.  Often, services at JFM had been so focused on changing interfering behavior that we have failed to appreciate the strengths each person possesses.  It has helped the organization make shift the focus on to how capable people are rather than what they need to change.  Once character strengths are identified, they consider the person’s interests and passions.  Combining strengths and passions has provided new ideas and inspiration for where and in what capacity people might connect with the community. 

The ultimate goal has been not just to get people involved in the community, but to look for ways to help them gain a new role. JFM looked for opportunities for their people to serve or volunteer, not as an end in itself, but as a way to contribute to others.  When people serve, their value increases in the eyes of others, moving them from a burden to someone capable of contributing.  In addition, the person gains the opportunity to experience the joy of giving, something we have often robbed them of in our role as service providers.  For a very long time, people with disabilities have been recipients of services, but have not been given the opportunity to reach out and give of themselves to help others.  Engaging people and the community in this way has led to some surprisingly wonderful outcomes. 

Through reflection and honest dialogoue about their services, JFM has began to change the culture of its organization.  Here are a few stories of how this looks like on the individual level:

Tracy struggled most of her life to find her way in the world.  Difficult/traumatic experiences coupled with intellectual challenges made coping with life more than she could handle on her own.  However, finding supports that could keep her safe and provide stability proved nearly impossible for almost 40 years.  But all of that changed 10 years ago when JFM. began supporting her.  A very structured, behaviorally based program provided Tracy with what she needed to find stability.  Healing, however, was illusive. 

Tracy loves to cook and enjoys children.  In the past, her personal challenges got in the way of pursuing these passions, but focusing on her strengths rather than those challenges changed everything.  Tracy began meeting with a friend weekly to work on making blankets, which they then delivered to the Ronald McDonald House for the families who reside there while their children receive medical treatment.  The feelings she experienced helping children in this way were new and positive.  Then Tracy cooked a meal for the families and began bringing baked goods to daycare centers, nursing homes and a local mission.  Within 6 months of beginning these new activities, Tracy no longer needed a gait belt to keep her from falling or a helmet to protect her if she did fall.  And the number of days life overwhelmed her coping skills decreased by half.  Tracy still needs a high level of support, but the impact of giving to others and focusing on what is good in her life rather than what needed to change has enhanced her life far more than the previous 10 years of behavioral interventions.  Engaging with her community has not only increased her social capital, but she has experienced both the physical and emotional benefits from finding her purpose and giving to others. 

Steve is personable and loves to learn and has a passion for history.  He used to take walks through cemeteries and do rubbings of the headstones, but it didn’t help him make any new friends or give him a sense of purpose.  In the past, our focus on ameliorating his intractable mental health issues clouded our ability to appreciate his humor, creative problem solving and people skills.  Now, he is a member of the historical society in his town.  He attends meetings and helps put on fundraisers.  It has given him a sense of belonging and his meaningful contributions the society are valued by the other members. 

Changing the culture at JFM has not come quickly or easily.  It has and continues to be challenging to identify the best way to implement change.  Training the 450 professionals who provide support in the residential services program is a big job, especially with ongoing budget cuts.  And they continue to wrestle with how best to teach staff the practical skills needed to help people make meaningful connections in the community.  But the successes JFM has had the privilege to witness and the contributions that have begun happening keep them pressing on to create more relational, strength-based supports that help people connect more deeply with their community.  

Organizational Culture Change

The first critical issue in any change effort is the awareness that we need to change. It is clear that providers of services to people with disabilities still do not have a solid understanding of social capital as a rehabilitation concept and outcome. Perhaps it is too simple, or maybe too “touchy-feely” – certainly, rehabilitation success with people who have significant disabilities can not be as simple as “more friends?” Yet, when we look at social capital from a broader perspective, or think about it in our own lives, the impact is clear. Friends are fundamental to our health and to having more opportunity in our lives.

Everyone associated with the organization must begin to critically re-think the purpose behind their work by asking the two questions ‘how is what I am doing helping a person that I work with to become more connected to their community’ and ‘what can our agency do with our existing resources to help people build more relationships and connections to the community?

IN member CLASS led this visioning exercise by organizing the agency’s leadership, board of directors and folks being served to conduct a S.W.O.T. analysis of the agency as it related to Interdependence. A S.W.O.T. analysis looks at the Strengths, Weaknesses, Opportunities and Threats related to a particular initiative, in this case it was focused on helping people to develop community connections and building social capital.  Everything the agency did or said was examined, including the agency’s mission and vision statements, the types of programs being offered, and how staff were being trained.

This process was the ultimate product because it infused into the fabric of the organizational culture the principle that relationships, and the resulting social capital were important.  This was the first step in creating an agency culture in which relationships are the most important outcome.  It is this simple change in perspective that sets the Interdependence approach off from the typical medical approach to services.  

The Importance of the Gatekeeper

The final step in cultural shifting revolves around the gatekeeper.  The only way new people, ideas, or products can successfully enter an existing community is when they are introduced and endorsed by a viable gatekeeper.  A gatekeeper is an indigenous member of the community who has either formal or informal influence with the culture.  These gatekeepers can be formally elected or selected leaders, or they might be one of the members who everyone can count on to get things done.  

These gatekeepers are powerful because they transition their influence to the person, idea, or product they are endorsing or rejecting.  This transition of influence is the first step to the inclusion of the new thing into the culture.  The mere fact that the gatekeeper likes or dislikes the idea is enough to sway other members to his or her side.  Remember, 60% of the membership of any community is usually neutral (or slightly on the negative side) on issues.  The gatekeeper uses his or her power and influence to persuade others to follow his or her lead.  The assertive gatekeeper will readily offer his or her opinion; the unassertive gatekeeper usually must be asked.

To effectively shift a culture to accept something new requires that the change agent identify and then enlist a gatekeeper to facilitate the passage.  This is simple yet complex in how it plays out.  On the one side we know that gatekeepers are a part of any culture or community.  We know that 20% of these gatekeepers are positive people interested in taking risks to promote things they feel good about.  We know that when the gatekeeper endorses a person, idea, or product, other members observe this and open their thinking to the same.  We also know that the more enthusiastic the gatekeeper is to the new item, the more apt others are to do the same.  All of this makes sense when we think about culture and community. If you want to bring a shift in cultural perspective, the endorsement and support of a gatekeeper is absolutely essential.  To this end, then, the ability to identify and then ask for gatekeeper assistance without being perceived as attempting to meddle or influence is a true art in changing culture. This may play out differently for people than for ideas or products.

In his book The Tipping Point, Malcolm Gladwell reflects on the kinds of people necessary to move something from one level to another.   The movement of ideas, products, or even people ultimately has a tipping point.  Gladwell looked to understand how this might work.  In his book he describes three types of people who move ideas, people, or products into the mainstream.  He calls these folks “connectors, mavens, and salesmen.”  

  • The “connectors” are the people with broad circles and those who can influence a lot of these people.  These connectors are unique because their circles extend beyond the usual parochial boundaries.
  • The “mavens” are people who have a deep level of information and who are always looking to share this information with others.  A key thing about mavens is that they get nothing for their information.  They share important and useful things because they enjoy helping people.
  • The “salesmen” are passionate purveyors of ideas, products, or people.  Salesmen may not necessarily have deep relationships, but they have the opportunity to share things. 

A gatekeeper is a person with one, two, or all three of these qualities.  Gatekeepers are the key to cultural shifting by promoting and rejecting things that push the community to a new level.  The way they influence the culture can be either positive, when they support and endorse the new person, idea, or product; or negative, when they oppose or work against the new person, idea, or product.

    Over the years anthropologists have attempted to examine what type of people lead to social change and cultural shifting.  As new things help to develop or enhance the existing culture, the elements of positive gatekeepers become important to understand.  The theory behind this is called social influence theory. This theory teaches us the following facts about gatekeepers:

  • They tend to be positive people.  They genuinely like people and look for the good in everyone they meet.
  • They are social risk takers.  They reach out to the underdog and are willing to take cultural flack if need be.
  • They reach out to new things, and they are curious and interested in why, how, and why not.
  • They tend to be younger people and not so caught up in dogma.
  • More often than not, they tend to be women.  Men are usually more conservative and they become more easily set in their ways.
  • They are highly social and tend to be good mixers.
  • They tend to have respected influence with their community.

Positive gatekeepers are essential for the diffusion of new ideas, products, or people to penetrate into an existing community. The positive gatekeeper who steps forward to introduce or to endorse something new is critical to helping a new person in becoming a valued and respected member of a new group.