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

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

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.