Brian shares his story of multiple health challenges and family adversities, and his insights about how we can re-write our story and take control of our lives.

In this episode, I have an engaging conversation with life coach, Brian Raymond King. Throughout Brian’s life he’s been a student of adversity as he experienced multiple health diagnosis including; cancer, ADHD and MS – as well as going through a divorce, and being a single parent to three children with ADHD. Brian shares his story and his insights about how we can re-write our story and take control of our lives.

On the podcast Brian shares:

“It’s a matter of doing what you can with what you’ve got. In situations like mine, you don’t just give up on life and let it pass you by because you can’t do everything each day that you can do on your best day. Some people use their best day as their standard, but that is ridiculous because life ebbs and flows. Depending on where I’m at that day, I think about what can do and I show up and do 100% at it.”

How have you bounced back from each challenge in your life?

Paraphrasing from the podcast, Brain Shares:

“With each new diagnosis there is that oh crud moment. This is usually brief. But, grumping and groaning will not change the situation. Then I shift to what do I need to know? What resources are available? What books do I need to read so I can manage this? At some point being resourceful just stuck.”

What tools do we have in our toolkit to be resilient?

Paraphrasing from the podcast, Brain Shares:

“First off, there is noise that makes it difficult to use the tools [we have]. One of the most annoying offenders is the ‘shoulds’. It [life] should be this way, or it should be that way. Once we stop ‘should’ing’ all over ourselves, we can take the first step toward a solution. Maybe you don’t know what the solution is yet, but you can start problem solving.”

What about when the problem seems so bad, or too much to handle?

Brian asks his coaching clients, “Do you honestly believe that? Or, is that honestly true?”

Brian helps his clients think through if they want to be a victim of the situation or if they want to be resourceful and take charge by asking questions like:

“Do you want to be helpless or do you want to be in charge? What can you be in charge of right now? You can be in charge of your thoughts.”

In my coaching practice I often ask clients, “What assumption are you making?” This is a powerful question to help us realize the stories we are creating based on incomplete information. (Also, our assumptions tend to lean toward being negative.)

Mindset vs Skillsets:

Paraphrasing from the podcast, Brain Shares:

“You can have the best tools in the world [skillsets], but if you don’t believe in yourself [mindsets] you might not even want to use those tools [skillsets].

Brian believes we must first develop or mindsets, which is comprised of our belief systems to get the most from our skillsets.

I ask Brian, How do we develop our mindsets and beliefs?

Brian shares, “Studying biographies. Don’t just listen to what they did, it is important to look at the decisions that they made, and the beliefs they hold. It is their beliefs and thoughts that led to their results. Try adapting to that belief for just a day - I am going to act as though this belief is true, and I am going to see the world through this lens. For example, you are a much different person if you believe that people are good at heart, vs people are just out there to screw you over. Things are first created in the mind, then in the real world.”

Who is one of your most influential mentors?

Brian shares, “Victor Frankl, who wrote 'Man’s Search for Meaning'. You can choose your attitude no matter your circumstances, and each person has the internal power to find inner meaning in any situation. He gave me perspective on how much I was self-pitying. I decided how I was going to face how I was going to feel and how I was going to choose to think.”

On the podcast, Brian discusses the concept of Hacking your Resiliency. Take a listen to the podcast to hear these valuable insights.

Brian leaves us with a challenge to consider, “Whenever a problem shows up one question you can ask yourself is, ‘What’s good about this?’ When you ask this question you immediately begin seeing what opportunities are available to you because that problem exists.

A big thank you to Brian for joining me on the podcast and sharing his insights! You can learn how to connect with Brian in the resources section below.

Love & Respect,

Eric Goll

Resources:

Brian's Website: Mindsetbeforeskillset.com

Connect with Brian on Facebook

If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes

The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!

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Guest Lynne Seagle shares how her organizaton was oppressing people with disabilities, and what they did about it.

This week’s guest is Lynne Seagle, CEO of Hope House Foundation, a not-for-profit organization started in 1964 by family members whom had sons and daughters with developmental disabilities in Virginia, USA. These families wanted something other than an institutional living for their loved ones, so they started the first group home in the state of Virginia. Hope house grew to run 13 group homes by the 1980’s, when they learned that the people living there actually didn’t want to live in group homes, and they did something about it. Today, Hope House supports 125 people that live in their own home, with a staff of about 260 people, half of those being part-time.

Lynne has been with Hope House for 38 years. She wants to create a better world for people with disabilities that are isolated or not valued, and she said, “there is no stopping point – it is a long journey”.

Finding Out People Didn’t want to Live in Group Homes

Paraphrasing from the podcast Lynne shares that, “…finding out people didn’t want to live in group homes started with a survey. The survey asked the question, ‘Does everyone like where they are living?’ Everyone said yes. It was odd to ask 120 some folks a personal question and get the same answer. We then re-worded the question to, ‘How do you want to live?’. And, the flood gates opened. People answered 1 of 3 ways, from most dominant to least; 1) I want a home of my own, 2) people wanted a job (most people were in day programs or workshops), 3) friendship and romance.

Lynne continues, “We [Hope House] had defined excellence as meeting all the rules – paperwork was clean, no employee grievances, well-kept homes, low staff turnover. We were looked at as the model in Virginia. BUT, when we gathered these themes [truths] we reviewed our program plans and not one program plan addressed these needs of people. This was a daunting realization for our organization.”

People Were Being Oppressed in Group Homes

Lynne Shares, “We started meeting people individually and we started realizing we didn’t know them. When you support someone in a group you only know them in the context of the group, not really an individual. It was quite astonishing to us. After we closed the first group home we started to study oppression (groups that have been oppressed); American Indians, women, people of color, the LGBT community. The book ‘Walking with the Wind’ by John Lewis was influential for us. We noticed all oppression looks the same, regardless of the group – keeping people poor, limitation of choice, very few freedoms.”

Hope House had discovered this truth that they were oppressing the very people they were there to serve, and they made a decision to no longer run group homes. The last of the 13 group homes closed 22 years ago, and everyone they support now has a home of their own.

Lynne shares, “[Hope House is] proud of this, but I’m surprised that this is still something to talk about as something new or something that should be considered in 2018.”

It was just the right thing to do.

At the time there were no examples on how to do this, and funding was set up in a group model. This was the hard road to choose. Lynne shares, what kept them moving forward is asking the question, “Why do people in disabilities need to live in groups when I don’t have to? We looked at the humanity of it, not the money, or the skill of the person.”

We are Responsible for the Oppression of People with Disabilities.

Paraphrasing from the podcast, Lynne shares, “What business looks exactly as it did in the 1970’s and has consistent oppression? When you look at social justice change in almost every case the people being led it were the people being suppressed. When you look at the nature of developmental disability, the people being oppressed need our support to lead a revolution, and we would be revolting against ourselves. We need to step up! Do we want neighborhoods that are being inclusive or not? There is a huge group that is being left out.”

Insight from Lynne: “We need to change, not people with disabilities that need to change.”

How Do We Bring People Out of Oppression?

Lynne shares, “What we did is gave everyone a home of their own. No one wanted a roommate, except for people that were romantically involved. This gave people a lot of control. We chronically underestimate people with disabilities. When given the opportunity a lot of people with disabilities flew. After that, a focus on employment. Economic power opens up more choice.  Then we focused on connection and belonging. Not having a service life, but having your life.

Reconciling our Beliefs

Paraphrasing from the podcast Lynne Shares, “We had a prejudice or bigotry. When you value intellect and beauty …. people with disabilities don’t fit those values. When you lift that up you realize that you don’t believe that people with disabilities are your equal. We had to come to terms with that. That was internal work that everyone of us had to do. We believed the level of disability related to how much you could direct your life. We had to get rid of that stereotype. We support people that are non-verbal, that use a variety of devices [to live in their own home].  We now have a belief to the core that every single human being can direct their own life. When people are in their own homes they are looked at differently. The universe has its own way, without us controlling us. The natural rhythms of life start to happen then people have their own homes.”

Lynne shares the story of Willy and how he proved them wrong in his capability to direct his own life. Hope House went from providing $160,000/ year of support to $10,000 per year in support as Willy got his own place and started to flourish.

We are Oppressing People with Disabilities

Upon my reflections, we are oppressing people that are living in grouped settings, but people don’t have to be living in an institution or group home to be oppressed. People with disabilities are being oppressed by their families, their friends, their supporters and by society at large. Lynne shares with us the common signs of oppression; keeping people poor, limitation of choice, very few freedoms.

When I examine my own life, I’ve been guilty of keeping people oppressed. For example, I’ve played a part in keeping my sister (who has a disability) poor by not getting her access to her bank account and helping her learn her economic power, by limiting her choice or taking decision making power away from her, and by not acting to get her out of isolation at my parents home.

There are very simple steps I’m taking to empower my sister, like getting her a bank card and assisting her with online banking, by standing beside her to play a supportive role in making decisions, and creating and upholding a big bold vision for her to move out of my parents’ home and into a home of her own. 

Once I became conscious to my beliefs, and how I was being oppressive to others I had to make a choice. I could choose to continue to suppress these truths and continue on with the status quo, or I could roll up my sleeves and do the hard work of examining my beliefs and change my beliefs to put people with disabilities on equal footing and to support them in breaking free of oppression. I chose the later, which will you choose?

Lynne leaves us with this message, “It is all of our responsibilities to work on ourselves around the issue of equality, regardless of disability, and to take action for those left on the sidelines."

Love & Respect,

Eric Goll

Resources:

Hope House Website: https://www.hope-house.org/

If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes

The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!

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Guest Joscelyn Duffy shares her strategies of resiliency through her recovery from a life threatening illness, & we discuss how to be a compassionate supporter.

Joscelyn Duffy is a communication and contribution strategist who travels the world serving leaders in the development of their messages, model and methodologies. At the young age of 26, Joscelyn went from high potential employee in the financial sector and marathon runner to being bed ridden for 2 years with a life threatening case of lupus. During these two years Joscelyn slowly recovered but was only left with 2 to 3 good hours per day. Joscelyn shares, “This was a shock and massive unexpected shift in my life.” Joscelyn found that she had to make the best of her 2 to 3 hours, especially compared to when she had 16. She was left asking herself, “How do I push through with mental fortitude?”

Paraphrasing from the podcast Joscelyn shares, “When my illness happened I wanted to hold onto the way life was and went right back to work from bed.” She found that she couldn’t do what she was once able to do. She said to herself, “If I am listening to life I’ve got to get over what my head is telling me, and there is something else I could be doing.”

This new thinking led to acceptance of her current situation, and a focus on what mattered most to her – being active with other people, and engaging in her passions; reading, writing, and painting. There was a lot of healing that came through writing a book on her story titled, “Unshakable to the Core.” This led to Joscelyn’s current career as a ghost writer, helping other people to have their voice heard.

Joscelyn’s Insights on Resiliency:

For Joscelyn, it was simple; compassion and small actions.

Simply have compassion for yourself.

Small action; It is going to take small steps to get to where you want to go. When Joscelyn was learning where to walk, she had to start with the first couple of steps. Every step is like going up a staircase toward your ultimate goal.

How can we support someone that is experiencing a challenge?

“If you want to make god laugh, you tell him your plans.” – Woody Allen.

Paraphrasing from the podcast Joscelyn Shares, “Life rarely ever goes the way we plan it. We take ourselves way to seriously. We can take a light-heart into these situations as a supporter. Try to encourage flexibility.  Especially when you are working with a person that has to do something a certain way, ask them to just try it once.”

Empathy Vs. Compassion

Something I have personally been struggling with is being empathetic of people I am supporting, rather than being compassionate.

So, why is this a problem?

Being empathetic is feeling and taking on what someone else is feeling or walking in their shoes. Or, as Joscelyn defines it, feeling the pain of another.

Vs

Being compassionate is understanding what someone is going through, but not taking on their emotions.  Or as Joscelyn defines it, wanting help to alleviate the pain and suffering of others.

The challenge with being empathetic is that our ability to be helpful is at risk of being diminished by taking on the emotions of others, where as being compassionate allows us to stay grounded in our own perspective and to support the person to move forward.

The Compassionate Supporter is a More Effective, and Happier Supporter.

In 2016, Michael Poulin and associates at State University of New York at Buffalo conducted a study to see the impacts of taking two different perspectives as a supporter; a helping imagine-self perspective taking (ISPT) (i.e. walking in their shoes perspective), and an imagine-other perspective taking (IOPT) (i.e. seeing through their eyes perspective).

The study found that ISPT resulted in relative threat, whereas IOPT resulted in marginally greater relative challenge. This effect was mediated by increased perceived demands of the situation. Moreover, self-reported distress was only associated with threat during ISPT, but not during IOPT.

Source: https://www.sciencedirect.com/science/article/pii/S0022103116303961?via=ihub

So, what does this mean?

When we walk in another's shoes as a supporter, we take on threat and our stress levels increase. When we look through the other person’s eyes there is only a small impact on us - less stress. This study tells us that we can be a more effective supporter by being compassionate vs empathetic.

Putting Compassion into Practice:

Putting compassion into practice is something I am working to develop myself. Joscelyn offered a practical model, ‘The 4 P’s of Compassion’, to understand compassion that I found very insightful, as well as a couple of tools we can use to practice being compassionate.

"The 4 P's of Compassion"

Presence: Being there fully the moment with the person

Perspective taking: Seeing the world through their eyes, without fully stepping into their shoes

Patience:  Being patient with yourself and those you serve.

Progress: support for forward progress – the small steps also count.

Tools to Practice Compassion:

Being compassionate is about perspective taking. As stated in Michael Poulin’s study, it is more beneficial to try and see things through another person’s eyes, rather than trying to walk their shoes. When we look through another’s eyes and stay grounded in our own two shoes as the supporter we have decreased stress, and increased health and wellbeing.

We aren’t helping others when we are taking on what they have.

Sounds great! How do we do this?

Joscelyn shares, “You can think about it like watching a movie. When watch a movie you might laugh, smile, or cry, but when the movie is over you haven’t taken that on (i.e. those emotions don’t continue to impact you). You have learned from it, you are better for it because now you see a different perspective, but you don’t internalize it. It is a dance.”

Joscelyn is also a Reiki practitioner, and she had to learn how to stay in own her own strength and energy. She shares a strategy that she uses, “I see my favorite colour around me (picture being in a bubble of colour), and positive energy can come in, and the negative energy can’t penetrate this shield. This allows us to stay in our own energy while supporting another."

On the podcast, Joscelyn also shares how to find your own voice, which is something Joscelyn has a great deal of experience supporting others to do as a ghost writer.

A big thank you to Joscelyn for sharing her story and insights on resiliency and compassion!

Love & Respect,

Eric Goll

Resources:

Joscelyn’s Website: Joscelynduffy.com

Joscelyn’s Books: Click Here

Joscelyn’s Blog: Click Here

Read more on perspective taking: Click Here 

If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes

The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!

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Guest Nick Maisey, founder of Befriend, shares his insights on building relationships and creating more inclusive cultures.

Nick is an Occupational Therapist, social entrepreneur and community builder from Perth, Australia. With the support of the Westpac Bicentennial Foundation, Nick completed a Social Change Fellowship to undertake an international information exchange, to enhance his learning of innovative, effective approaches to fostering the development of relationships and community connections.

Nick spends a lot of his time reflecting on the importance of relationships, and thinking about what we can do together to build more connected societies. 

This curiosity is what led Nick to start the organization, Befriend. The inspiration to start Befriend came when Nick was studying Occupational Therapy. The story goes, Nick received an email from Tim, that roughly read, “I am a 23-year-old guy, I like watching movies, going to the beach, and learning how to surf. I don’t have any friends, I am wondering if there is anyone interested in getting to know me?”

Nick shares, “There was something simple and honest about his email. I met him (Tim)…  he has taught me a lot about inclusion, and what it is like to live a meaningful life connected to others. He didn’t have a single person that he would call a friend. It struck me that we live amongst so many people in close proximity of each other, but there are so many people that feel alone.”

This started a lot of conversations between Nick and his friends, and in 2010 Befriend was started with the intention to foster a more inclusive and connected society.

Nick Shares, “The experience of loneliness for many of us comes from the feeling of being excluded.  With Befriend we foster the development of new relationships, and a more inclusive culture.”

How is Befriend doing this?

Paraphrasing from the podcast Nick shares, “It is about simplicity. We take a community building approach by working with local people that are interested in building community, and we work with them to bring people together. We partner with organizations and networks where people are vulnerable, and we facilitate introductions and connections. In partnership with community organizations we help to get the word out about these gatherings, and build bridges to vulnerable people. In Perth, we have about 50 social gatherings per month across the city.

Befriend is kind of like a Meet up, which is platform for any individual that can start up a group around an interest, but with an intentional value of inclusion. Befriend focuses on teaching gathering hosts on how to cultivate inclusive cultures.

Reducing Loneliness and Isolation in Community:

In 2017, Nick was awarded a Social Change Fellowship from Westpac Bank’s Bicentennial Foundation to go on a self-development experience to further his social change venture.  This was essentially a scholarship for a 3-month international self-directed learning tour that took Nick around the world and back, including stops in; Australia, New Zealand, United States, Canada, Scotland, England, and Denmark.

On Nick’s journey he visited 58 groups to explore his curiosity in these two key areas:

1. What are effective approaches for fostering the development of natural relationships for people who have had a lived experience of being isolated, disconnected, or devalued within their community?

2. What are approaches for fostering more inclusive behaviours, attitudes and values within communities?

On the podcast, Nick shares the stories of his visits to a few of these 58 groups, and what he learned with them. Nick and I also discuss the traits we see in people excelling in the ‘community builder’ role. Take a listen to the podcast to hear these insights.

The Space In-between:

 Nick came to be very interested in the space in between his two key questions: that is, what are people doing to build natural relationships for devalued people, and to foster more inclusive cultures? A theme started to emerge – valued contributions. Nick noticed that when people devalued by their community made a contribution that they were intrinsically motivated to give they started to build natural relationships, and more inclusive cultures emerged. Some examples in practice where Nick observed this were volunteer time banking initiatives, skill exchanges, community dinners, interfaith initiatives (sharing knowledge and beliefs about god across religions to enrich collective sense of faith), and neighbourhood development projects.

Nick leaves us with this call to action to build relationships and create more inclusive cultures:

“Spend time thinking about, not what we need, or others around us need. But, how can we be helpful? And, how can others around us be people be helpful? Especially (use this thinking for) the people we think of living a life of needs.”

Love & Respect,

Eric Goll

Resources:

Nick's Blog: Click Here 

Befriend website: Click Here

Befriend Facebook page: Click Here

If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes

The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!

Click Here To Listen on iTunes

Welcome to Episode #042 of the Empowering Ability Podcast/ Blog. Today’s episode is about ‘Understanding the Sibling Experience, with Helen Ries.’ Before we get into the content of this episode, first some housekeeping because it has been awhile since you have heard from me.

Almost 4 months in fact.

In December 2017, I shared with you that the podcast would be taking a break for a couple of months so that I could develop new content and complete a few projects. However, life got busier than expected; with helping to run my family’s business, finishing the construction of my new house, supporting my sister to move out of my parent’s house, running my coaching practice for leaders and families working to create incredible ordinary lives for people with disabilities, and working on the adult sibling research we are going to share with you today.

Something had to give, and it was the podcast - even though I love podcasting. To give you an idea, publishing a 1- hour episode is about 10 hours of work, as I do all the recording, editing, writing, graphics, and publishing myself. So, moving forward I will be releasing an episode every 2 weeks, which is a much more manageable pace than weekly, also considering this podcast is currently free. I am a considering a ‘pay what you can model’ for those of you that are getting a ton of value from this podcast and wish to contribute to the production of the podcasts and the costs associated with it. I want this information to remain open and widely available to everyone, and this type of model will enable that. With all of that said, I have still been recording content over the last 4 months and I have some incredible conversations that I will be bringing to you over the next couple of months.

I’d love to hear from some of you to learn what has really resonated with you over the first 42 episodes. This will help me as I craft new content to bring you more of what you find valuable. Also, send me the names of guests you would love to hear on the podcast.

You can send me an email at [email protected].

Okay, enough housekeeping.

Today, my guest today is Helen Ries. Helen is a sibling, who supports her brother Paul, and they live together in Ottawa, Ontario. Helen also joined me on episode 9, which you can listen to here, where she talks in depth about her experience as a sibling and shares her insights. Helen is also an evaluator and consultant in the not-for-profit sector with an interest in social justice and poverty reduction, you can check out her work on her website.

Helen and I, discuss the research we have been doing to understand the life experience of adult siblings. The purpose of this research is to understand siblings so that we can better support adult siblings with resources, some of which we intend to create.

There were actually three of us completing this research, the third person being Becky Rossi. Becky just became the mother to her 3rd child, and wasn’t able to join us on the podcast – but here is a brief overview of our stories:

Helen’s Story:

All her life Helen knew that one day she would be responsible for her brother’s care. When that day arrived, it was early, unexpected and fast. The shock of suddenly becoming a caregiver still runs through her. There are moments when she remembers a time when she could go away for the weekend without planning it or when she didn’t have the nag of constant worry. It has been so far a difficult journey, but she is very proud of how her brother has thrived with her care and how their relationship has grown.

Becky’s Story:

Becky has spent the last seven years championing broad systems change through building community-based, non-traditional solutions to issues of isolation and vulnerability, both through her long-time work with P4P and as the sibling of an adult brother with Asperger’s Syndrome. Becky has a close relationship with her brother and – together with her sister and parents – they navigate the challenges and opportunities of creating a meaningful life, secure future and strong family.

Eric’s Story:

Sitting from his work desk Eric received a call from his distressed mother exclaiming "I just can't do it anymore". She was referring to caring for his sister, with a DD, 31 years old at the time. Eric had a decision to make – continue to stay arm’s length from his family, or jump in and play the role of a loving brother and loving son that he knew he could be. This started Eric's journey in supporting families with a loved one with a DD (including his own), through personal coaching and educating.

So, this is a big lead up to what we have learned, here it is….

The Sibling Life Journey

We looked at the common themes in the life of a sibling over the stages of a sibling’s life. These themes might not apply to every sibling’s life, but these are our observations from conversation with many adult siblings, and they line up well with the data we collected in a survey with over 360 adult sibling respondents.

0 years-18 years old: At a young age we get an understanding of disability, and we notice differences between ourselves and our sibling. Our parents are taking our brother or sister to many appointments and are often providing much more care to our brother or sister than they are for us. We are often asked to help out, and many of us just jump in wanting to help. This leads to siblings maturing faster than normal and developing a strong sense for caring for others at an early age. We also become our brother or sister’s protector. No one is going to mess with our brother or sister at school, or out in public without hearing about it from us. The maturity, carer, and protector are traits and values that we often carry with us throughout our lives.

18 years – 29 years old: At 18 typically siblings move out and go through a big growth and exploration phase. We get an advanced education, or head out into the working world, we try many jobs to see what we like, we travel. And our brother or sister, from age 21 on, is often living at our parents’ home with little to do and is actually in decline in terms of growth. During this time in a sibling’s life they will often describe having a feeling of guilt, as they are experiencing what life has to offer, and their brother or sister isn’t having the same opportunity. Siblings want their brother or sister to have the same life opportunities, but they don’t know how to support them to do so.

30 years – 39 years old: This stage of a sibling’s life is typically focused on career building and starting a family of their own. These things take a lot of energy and can mean a little less connection with our brother or sister and parents. This feeling of guilt can continue. We want better for our brother or sister but not really knowing how to help and use our influence. Siblings are often pushed out of the conversation my parents about their brother or sister because parents don’t want that ‘burden’ to be passed onto the other sibling.

40 years – 49 years old: Siblings have described having a ‘looming’ feeling in this life stage. More often than not, their brother or sister with a disability is still living with their parents, and the parent’s health is starting to decline due to age. Siblings can see this impending crisis coming, whether it is conscious or unconscious - it is keeping them up at night. What is going to happen when my parents can’t support my brother and sister? It is on me.

50+ years old: The parents decline to a point where they cannot provide care for their child with a disability, and someone else needs to take over that role. Many siblings step up to fill the role, all while dealing with their parents decline, their career, and their family. This can be a very challenging time period in a sibling’s life.

The Survey Findings:

There are 7 key findings that we share in the ‘Understanding the Sibling Experience’ report, here is a small glimpse into a couple of the findings that Helen and I discuss on the podcast. I recommend you check out the report, hosted by Partners For Planning (P4P), if you are interested in reading about all of the findings.

The Findings:

Where are our brothers and sisters with a disability living? Well it turns out that 85.6% of our brothers and sisters aged 20 to 29 years old are living with their parents. In comparison, the Canadian national average is 34.7% for people aged 20-29 years old. The percentage of people with disabilities living with their parents stays high well into the 40-49 year old age bracket, at 58.5%.

What are the current challenges identified by siblings? Siblings identified the mental health of their brother or sister and the mental health of their parents as the most frequent challenge they face. Followed by hosing options for their brother or sister, managing relationships, and emotional supports for themselves.

If you are interested in the other 5 findings, check out the report here.

Our Recommendations:

In our report, we outline 8 recommendations for siblings, families, organizations, and government to consider.

These recommendations include:

A deeper study of siblings

Adult siblings connect with other adult siblings to share their experiences

Development of resources and tools for adult siblings

Support for mental health of our families

Innovative housing solutions

Poverty reduction

Siblings are involved in the family planning discussions

Organizations reach out to siblings and support them.

I encourage you to read our report to learn more about these recommendations in depth, click here.

The Sibling Collaborative:

So, what is next for us? (Helen, Becky, and I)

We have done a lot of thinking about what we have learned about siblings and we have created a new project, called ‘The Sibling Collaborative’ to support siblings needs.

The purpose of the Sibling Collaborative is to ‘Connect Siblings and Strengthen Families’.

The Sibling Collaborative has a core set of values that guides our work:

Realizing Change with Compassion: We take action with the critical input and consideration of our brothers and sisters with a DD and our families.

Mutual Respect: We give people agency over their own lives, with consideration for all those involved.

Collective Solutions: We find a way forward by learning, working and co-creating together.

Unlocking Potential: We hold a big and bold vision for our brothers and sisters as well as our families. Our intrinsic creativity and resourcefulness knows no limit.

For this collaborative to be a collaborative we need others to collaborate with! We would love other siblings, self-advocates, family members, and organizations that share these values to partner with us on this journey. You can join the sibling collective mailing list here, to be updated on the journey as it unfolds.

Helen leaves us with a quote from friend to all siblings, Don Meyer, “If you want to invest in the long-term well-being of people with developmental disabilities, you need to invest in their brothers and sisters.”

Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.

Love & Respect,

Eric Goll

Resources:

The Sibling Collaborative Facebook Page: Click Here: Sibling Network

Join The Sibling Collaborative Mailing List: Click Here

Email: [email protected]

Understanding the Sibling Experience Report: Click Here

If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes

The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!

Click Here To Listen on iTunes

Tags:

Helen Ries

Siblings

Becky Rossi

Sibling Life Journey

sibling care-giving

Sibling report

The Sibling Collaborative

Al Condeluci provides us with a 4-stage framework to build social capital (meaningful relationships) for people with disabilities. Keenan Wellar also joins us to share the experience of putting the framework into action with his team at LiveWorkPlay. This podcast was created from a segment in Episode 006, so it might be the second listen for you long time listeners, but it is so good that it is worth another listen!

Resources:

How to contact Al Condeluci:

Website: http://www.alcondeluci.com/

Contact: http://www.alcondeluci.com/contact/

Location: Pittsburg PA, USA

How to contact Keenan & the LiveWorkPlay team:

Website: http://liveworkplay.ca/

Website: https://keenanwellar.wordpress.com/

Contact: http://liveworkplay.ca/contact-us/

Phone: 613-702-0332

Location: Ottawa, Ontario, Canada

Dr. Jen created the The Umbrella Project which embodies the idea of using challenges life throws at us as an opportunity to learn new skills and cope.

In this week’s episode of the Empowering Ability podcast, I had the pleasure of chatting with good friend, Dr. Jennifer Forristal (aka Dr. Jen). Dr. Jen helps us to understand the approach a Naturopathic Doctor (N.D) takes with a patient, educates us on gluten/dairy/ egg free diets, shares common questions and answers from the developmental disability community, and she shares her amazing work with The Umbrella Project.

Let it rain – The Umbrella Project

One of my favorite quotes is:

“Life isn't about waiting for the storm to pass. It's about learning how to dance in the rain.” —Vivian Greene.

Dr. Jen has created the The Umbrella Project which embodies the idea of using the challenges that life throws at us as an opportunity to learn new skills, and develop our ability to cope. 

Dr. Jen, Founder of the project, shares, “The Umbrella Project is a paradigm that I have built to help people better understand the world of coping, positive phycology, and all of the skills that we use to have better wellbeing.  The skills like self-compassion, resilience, mindfulness, and purpose have same research outcomes; they help us take on life and thrive no matter what is happening to us. I call it The Umbrella Project because I think about the stresses of life like rain, they are inevitable and we try to avoid them, but we are not going to. It is better for us to think about how to prepare for those days than it is to try and eliminate those days from our lives. We take the stress and the challenges of life and use it as a tool to build coping skills – what we call umbrella skills. I’ve built The Umbrella Project to do this, and we have brought it into schools to teach kids, and we are now educating parents as well.”

How Does The Umbrella Project Teach Kids?

Paraphrasing from the podcast Dr. Jen Shares:

We share the language, and help kids understand what the skill is. 

We show kids the outcomes of those skills and tell them the research. It is amazing what kids can absorb!

We help them go into the world and see these skills in action. For example, when you see someone being resilient it makes you more resilient yourself.

On the podcast, Dr. Jen shares how they are teaching parents these skills.

What Does a Naturopathic Doctor Offer?

Paraphrasing from the podcast Dr. Jen Shares:

Naturopathic doctors (N.D.s) are primary care providers in Ontario. N.D.s have the same training same as a medical doctor for first 2 years including; diagnostics, blood work, etc.. Where we branch off is that we use more natural styles of treatment such as, exercising, eating better, taking the right supplements, stress reduction. There is so much research on how these interventions are effective at treating many different conditions.

Naturopaths work to understand the cause of what is going on, rather than just focusing on symptoms. A N.D. spends a lot more time with a patient, and we work toward bringing that person to an optimal state of wellbeing. For example, if someone had a skin condition we would look at things like what is going on with their gut health, not just put a cream on the rash. OR if someone was experiencing anxiety we would spend a lot of time looking at the lifestyle things that would help them come out of that state of anxiety and address the underlying things, rather than just give them a medication to alleviate the symptom of anxiety.

Gluten / Dairy Free Diets:

Paraphrasing from the podcast, Dr. Jen shares:

There isn’t a cookie cutter approach, and recommendations are always individualized. The research shows a certain percentage of the population responds really well to gluten free & dairy free diets. Eggs come up often as well. It is worth trying this type of diet and seeing if it works for you. You can start to see evidence of positive changes in as little as 1 to 2 weeks. It isn’t something that you have to commit to for a life time. Look for noticeable changes, you might not see the full impact of the changes, but you can start to see results. There is often gut symptom that comes up from eating these foods, and it is easy to see changes in these symptoms.

Are There Common Questions You Get from the Developmental Disability Community?

Paraphrasing from the podcast, Dr. Jen shares:

Often, when I see these families biggest thing that I see is that parents get very tired and burnt out. The parent brings in the child, and focus shifts to the parent. We discuss getting better balance in their life. If the parents are healthy then it seems to trickle down to the rest of the family.

When it comes to kids, sleep is a big thing. If one person isn’t sleeping then the whole family can be impacted.

On the podcast, Dr. Jen also discusses the importance of sleep, and provides sleep tips. She also shares how to find the best N.D. for you.

A huge thank you to Dr. Jen for coming on to the podcast and sharing her amazing work. If you are interested in learning more about The Umbrella Project, Dr. Jen would love to talk with you about it.

Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.

Love & Respect,

Eric

Resources:

The Umbrella Project Curriculum and Newsletter: Click Here. 

Email: [email protected]

If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes

The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!

Click Here To Listen on iTunes

Don is one of the world’s leading experts on siblings, and has supported siblings for the last 35 years.

Don Meyer, Director of the Sibling Support Project. 

The Sibling Support Project is a national program in the United States, with international presence, dedicated to the millions of brothers and sisters of people with developmental disabilities. The program is supported by Washington state’s largest early intervention center, the Kindering Center.

Why Are Brothers and Sisters So Important?

Paraphrasing from the podcast, Don Shares:

Anything we can say about being a parent, we can put ditto marks underneath for siblings. The research says siblings have parallel experiences to their parents. But, when we look at the services, and considerations that siblings get - siblings get the short end of the stick. In the USA, there are 200-300 people that have full-time jobs to support parents, there is 1 person with a full-time job supporting siblings (and that is Don).

Brothers and sisters have the longest lasting relationship with a person that has a developmental disability. This relationship is lifelong. When mom and dad are no longer available the brother and sister’s will make sure their sibling will live a dignified life in the community.

No one logs on more moments and minutes with their brother or sister.

No one has a greater impact on the social development of a person with a developmental disability.

Why Are Siblings Underserved?

Paraphrasing from the podcast, Don Shares:

Siblings are off the organization’s radar screens because they not squeaky wheels. As siblings outlive their parents service providers are beginning to realize there are these brothers and sisters out there.

If you want to ensure a good long-term outcome for people with disabilities then invest in their siblings because they are going to be there in the long haul.

There is reason to believe that intervening with siblings, even young siblings, has a benefit to everyone.

How Can Service Providers Invest In Siblings?

Paraphrasing from the podcast, Don Shares:

Service providers can create initiatives that specifically reach out to brothers and sisters, and they can change their policy to explicitly invite brothers and sisters.

Provide siblings information that they think is important. Brothers and sisters have a lifelong need for information. This is a parallel that siblings share with parents.

How do siblings get their information? They are lucky if they get it from their parents. Educational materials need to be prepared specifically for siblings.

Sibshops

Don goes around the world and shows people how to start Sibshops; peer support and education programs for school aged siblings that have a brother or sister with a developmental disabilities. There are 350 Sibshops worldwide, including in the USA (250), Canada (30), Iceland, Ireland, and Japan. Sibshops got their start in 1982, and Don has been training people on how to run Sibshops since 1990. The typical Sibshop age spread is 8-13 years old. This age spread is tweaked all the time – sometimes as low as 6 years old, and some organizations even have teen Sibshops.

One of the biggest benefits of Sibshops that Don has observed is the peer to peer support and connection with other kids that are walking down a similar path. Don has met many siblings that don’t talk to another sibling until they are in their 40’s! It is unheard of for a parent to wait 40 years before meeting another parent with a child that had a developmental disability. But, this is the reality with siblings. (In my own experience, I didn’t connect with another sibling until I was in my late 20’s. Also, I recently facilitated an adult sibling meeting and it was the first time 30% of  the group had ever connected with another sibling.)

Don shares, “We are giving young siblings a chance to meet young siblings, learn about the services their brothers and sisters are getting, and to learn how others are dealing with sticky situations. We have designed Sibshops to be fun, because they are for kids. We have a celebration of contributions made by brothers and sisters, and we mix content activities with recreational activities.”

The University of Washington has researched the effectiveness of Sibshops and found:

Over 90% of respondents said they had a positive effect on how they felt about brother or sister.

2/3 of respondents were taught coping strategies.

94% said they would recommend Sibshops to others.

3/4 of respondents said Sibshops impacted their adult lives.

Don Shares, “(The value of Sibshops is…) to be in the community of people who get it. To vent in a non-judgmental forum, to know you are not alone, and learn about resources and strategies.”

On the podcast, Don shares the unique concerns and opportunities that he has observed after interacting with 1000’s of siblings around the world. The list includes concerns like guilt and embarrassment, but also includes opportunities like maturity and diversity. I recommend you take a listen to the podcast to hear all of Don’s insights.

This podcast is packed full of resources for siblings, which are all listed below in the resource section.

A big thank you goes out to Don for joining us on the podcast and sharing his work and insights on siblings!

Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.

Love & Respect,

Eric

Resources:

Social Networking Groups for Siblings:

Sibnet Adults Click Here

Sib Teen Click Here

Sibshop curriculum Click Here

The Sibling Survival Guide, created with Sibling Leadership Network. Click Here

The Sibling Slam Book – by teen sibs for teen sibs. Click Here

Views From Our Shoes – collection of essays from young siblings. Click Here

Thicker Than Water – collection of essay from adult siblings Click Here

Being the Other One, by Kate Strohm Click Here

Riding The Bus with My Sister, by Rachel Simon Click Here

Special Siblings, by Mary McHugh Click Here

Paper: What siblings would like parents and services providers to know. Click Here 

Contact Don

Email: [email protected]

Phone: 206-297-6368

If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes

The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!

Click Here To Listen on iTunes

In this week’s episode on the Empowering Ability Podcast we welcome guest Dr. Annick Janson, whom resides in NZ. Dr. Annick Janson is a clinical phycologist, and a mother of 3 children. Her youngest child, Yaniv, is on the spectrum, and life changed quite a bit when he came into their lives. Annick carries the deep personal experiences of being both a family member and a service professional.

As a professional, clinical phycologist, Annick followed a typical pathway, and became dissatisfied with the outcomes they were getting.

On the podcast Annick Shares:

“4 years ago, I met Sylvana Mahmic, CEO of Plum Tree service provider for young children that have a developmental disability in Australia - serving 700-800 people per year. [Both Sylvana and Annick have a child with a disability.]  (They asked) if we had to scrap everything, what would be the best service offering for families that will make a serious difference?”

They took a design thinking approach, including an ethnographic research approach and rapid prototyping to build a learning program called 'Now and Next'.

Annick Shares, ”(We looked at) how can parents use their learning to build on success, and get better, and better results for their children. We started with 18 sessions, and it is now down to 8 group sessions, and 1 one on one session.

The learning program shifts the mindset of parents to understanding the power of their own agency, and the control they have over their wellbeing.

Why a Learning Program?

Paraphrasing from the podcast Annick Shares:

We are using a learning program because we found people (parents) are feeling overwhelmed, and there generally isn’t something wrong with them (grief, denial, etc.). Annick didn’t want to generalize, but what they found is that what people need is to learn strategies and solutions to get the results that are meaningful to them. Now and Next is a learning framework, rather than a therapeutic framework.

The Now and Next Program VS. The Traditional Model

There are 5 areas of differentiation that the Now and Next Program focuses on Vs. the Traditional Model.

Paraphrasing from the Podcast Annick shares:

1. The Initial Interview:

In the initial interview with a professional they ask you “Tell me about your child?”  This was a stressful situation as a mother. You eventually say… "my child can’t do this, and can’t do that." Parents are left feeling terrible. Until now we haven’t really had a better way.

In the Now and Next Program, we used the theory of gamification and created a game called, 'Pictability'. We chose pictures for the game based on our research of what people had used their individualized funding for. We designed the game so that people are brought straight into the strength domain using projective identification. People are able to identify a great future for their child and create a vision board with a long-term vision, and short-term goals. Games can bring out a lot of creativity and learning.

2. Notes are Shared:

In a typical parent – professional relationship the professional is the one that is taking and keeping the notes. These are often written up in a report by a professional that may be written in jargon and can be hard to understand for families.

With Now and Next Parents hand write their own goals, and we use technology to create a multi-media report so those goals can be shared with loved ones and supporters easily.

3. Working on Goals:

In the traditional model, I often hear that it is really hard for parents to come up with goals, and the goals are written up by the professional, as mentioned above.

In Now and Next, parents define and work on their own goals, and they become empowered. Parents choose their own goals, and parents are committed to these goals because they have chosen them.

4. Positive Psychology:

The Now and Next Program is the first of it’s kind (to Annick’s knowledge) to incorporate the concepts from Positive psychology. Traditionally psychology looked at how we can get someone from a -3 closer to zero, say -1. Positive psychology looks at how can we get someone who is at zero to +2.

Martin Seligman, one of the forefathers of positive psychology, taught us the concept of learned helplessness, which says that we bear unpleasant circumstances because we have learned they are un-escapable. But, through prospection we are able to look into the future and build a better future for ourselves. We looked at the prospection model and integrated these ideas into our model.

5. Sustainable and Scalable:

With the traditional model, there is a power imbalance and families are dependent on professionals. This is not sustainable. There is limited funding for professionals, and we cannot rely on this.

When I talk to professionals and parents all around the world and ask them how they would rate their partnership their answers don’t always match up. At the end of the day, parents are expecting professionals to do the work to ‘fix’ their child. As a society, we have put professionals in high regard, and we have given them power.

With the Now and Next Program we hold parents as the experts, and we are giving parents the tools they need to build the future they want. We have also found that Parent to Parent facilitating has proven to be most effective because of the deep understanding and empathy parents have for each other. This contributes to the scalability of the program because participants are becoming facilitators, and they can then train local people.

The Now and Next Program is measuring the amount of agency (i.e. empowerment) that a parent has, and they have demonstrated significant increases post program.

“In April 2017, the peer facilitators and alumni of the Now and Next program held their inaugural conference, entitled ‘By Families, For Families’, in Sydney, Australia. At this conference, something groundbreaking transpired, something both profoundly significant and genuinely radical: parents of young children with disability and developmental delay actively accepted responsibility for asserting their “natural authority” (Kendrick, 1995) in their partnerships with their child’s professionals and therapists.” Read more from the source article here.

Annick Reflects on the turning point with her son, Yaniv:

“I was disappointed in professionals trying to get Yaniv to fit into a ‘normal’ box, (which wasn’t working very well). There was a lot that he was teaching me, and we decided to go for the amazing and genius box. In high school, Yaniv became interested in art. In art class, he required less of a teacher aid, and this motivated Yaniv. Whereas, in the more academic classes he needed more of an aid. We took the ‘Eye of the needle’ approach, and everything they were trying to teach Yaniv would go through art. An artist needs to have a bio, and the way that you write it is by pushing this button on the computer. Today, Yaniv is an international artist. Learn more about Yaniv and his art through his website Yanivjanson.com.

A huge thank you to Dr. Annick Janson for coming onto the podcast! If you would like to learn how to bring Now and Next to your area please reach out to Annick! (email: [email protected])

Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.

Love & Respect,

Eric

Resources:

Annick’s email: [email protected]

Website: egl.ac.nz

Blog: Click Here

Videos: Click Here

If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes

The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!

Click Here To Listen on iTunes

In 1995, Patti looked to redesign the disability support organization, moving away from the norm, and she co-founded Neighbours Inc.; an organization that supports people in an individualized way to live a full life in a community in the of their choosing.

What led Patti to do things differently?

Paraphrasing from the podcast, Patti Shares:

It was the inequities that I saw.  In the group homes (I worked in), people were living with the same people that they were living with in the institutions, and in some cases people that they didn’t like. People were going to day programs instead of having a job, they were all riding in the same van. They were living a separate life from everyone else. The people living in the group home had a nicer home, but life wasn’t all that different than living in an institution.

The staff working in the group homes wanted to do good things for people, and were committed to helping people to have a full and meaningful life. But that wasn’t happening.  

Patti discovered that it was the way that the supports were designed that was preventing the outcomes of living a full life. “No matter how hard we were working it didn’t matter, there was a more global structural issue. We needed to design the support differently. The supports we were providing were keeping people from living the life they wanted to live. Instead of helping people, the structure of the work we were doing was hindering people from going in the direction they wanted.”

Patti felt that she had to take some personal responsibility. In her own heart, she felt that she had to do something.

She Created Neighbours

Neighbours started with the fundamental beliefs that people should be in control of their life (supports, services, homes, etc.); not the agency. Patti shares, “This is a dramatic shift. We are working for the person, they are the boss. If they decide to go (fire Neighbours Inc.) they can go, and they can take their money. (At Neighbours Inc.) we didn’t want people to be dependent on the developmental disability system. If you are dependent on the system (funding) then you are stuck. We invested in looking into other resources for people.  There is no one that we support that is wholly supported by the government. (The people Neighbours Inc. supports have a combination of) social resources, support resources, and community resources.”

The Neighbours Inc. 5 Values:

Neighbours Inc. was founded upon 5 essential values that are creating the outcomes of people living the life they want to live. Patti calls this their ‘Investment framework’ and shares, “If you invest in these areas with people you can help them develop a meaningful life.”

Paraphrasing from the podcast Patti shares the 5 values:

Value 1 - Dreams and Vision: People’s lives and support should be built upon a person’s dreams and vision, not based on a program. A lot of people have not had a lot of life experience, so when you talk to people about how they want to live their life it is really hard for them to know how they want to live their life. We need to support people to explore, to see the world, and to see what is possible. A lot of people have lived isolated lives with supporters coming in and out of their lives for years. We have to come in and build trust. (At Neighbours Inc.) we use Maps and Paths ( as part of our process (to help people create their dreams and vision), and this is a process over time.

For more information on person centered planning processes such as MAPS and PATH, see Inclusion Press (Forest, Pearpoint, O’Brien, Kahn) Click Here

Value 2 - Choice and Control: People should have control over their own life, and the responsibility that goes along with that. Any money to support a person is their money, it is their budget, and they have authority over their budget (Individualized budgets). They are the boss of their own staff and make decisions on who they hire, fire, and what they want to pay them. We think people should have control of their own home, so we don't own any property. Instead, we support people to rent and buy their own homes. If a person decided they didn’t want us to work for them anymore then it is their home, and their money.

Value 3 – Finding Gifts and Strengths: Helping people figure out who the person is, and what they have to offer the world. What is the person’s gifts? What is their passion? This is helping people see themselves differently, and helping other people to see the person differently (mindset shift from looking at deficits).

Value 4 – Places to Share Gifts: We help people to find the place to share their gift. These are places in the community where the person is valued as an asset. This is the reason we made a decision not to have offices (because of their commitment to helping people finding places in community).

Value 5 - Meaningful Relationships: We support people to have meaningful relationships in their life (Patti views this as the most important value). Good paid relationships are critical, but beyond that it is important to have non-paid relationships – Friends. The stats are show that loneliness kills more people than smoking. When we look back on our lives it is the people you loved, and the people who loved you that you remember. With disability, it is often a small number of people that you love and who love you, and it is usually our family.

On the podcast, Patti shares several stories of amazing people she has worked with and how they embraced these values to live ordinary lives in community.  One of Patti’s stories is about a 79-year-old woman moving out of an institution, after 50 years of confinement to the institution grounds, and creating her life. It is an incredible story that I recommend listening to.

What led Patti to do things differently?

Paraphrasing from the podcast, Patti Shares:

It was the inequities that I saw.  In the group homes (I worked in), people were living with the same people that they were living with in the institutions, and in some cases people that they didn’t like. People were going to day programs instead of having a job, they were all riding in the same van. They were living a separate life from everyone else. The people living in the group home had a nicer home, but life wasn’t all that different than living in an institution. 

The staff working in the group homes wanted to do good things for people, and were committed to helping people to have a full and meaningful life. But that wasn’t happening.  

Patti discovered that it was the way that the supports were designed that was preventing the outcomes of living a full life. “No matter how hard we were working it didn’t matter, there was a more global structural issue. We needed to design the support differently. The supports we were providing were keeping people from living the life they wanted to live. Instead of helping people, the structure of the work we were doing was hindering people from going in the direction they wanted.”

Patti felt that she had to take some personal responsibility. In her own heart, she felt that she had to do something.

She Created Neighbours

Neighbours started with the fundamental beliefs that people should be in control of their life (supports, services, homes, etc.); not the agency. Patti shares, “This is a dramatic shift. We are working for the person, they are the boss. If they decide to go (fire Neighbours Inc.) they can go, and they can take their money. (At Neighbours Inc.) we didn’t want people to be dependent on the developmental disability system. If you are dependent on the system (funding) then you are stuck. We invested in looking into other resources for people.  There is no one that we support that is wholly supported by the government. (The people Neighbours Inc. supports have a combination of) social resources, support resources, and community resources.”

The Neighbours Inc. 5 Values:

Neighbours Inc. was founded upon 5 essential values that are creating the outcomes of people living the life they want to live. Patti calls this their ‘Investment framework’ and shares, “If you invest in these areas with people you can help them develop a meaningful life.”

Paraphrasing from the podcast Patti shares the 5 values:

Value 1 - Dreams and Vision: People’s lives and support should be built upon a person’s dreams and vision, not based on a program. A lot of people have not had a lot of life experience, so when you talk to people about how they want to live their life it is really hard for them to know how they want to live their life. We need to support people to explore, to see the world, and to see what is possible. A lot of people have lived isolated lives with supporters coming in and out of their lives for years. We have to come in and build trust. (At Neighbours Inc.) we use Maps and Paths ( as part of our process (to help people create their dreams and vision), and this is a process over time.

For more information on person centered planning processes such as MAPS and PATH, see Inclusion Press (Forest, Pearpoint, O’Brien, Kahn) Click Here

Value 2 - Choice and Control: People should have control over their own life, and the responsibility that goes along with that. Any money to support a person is their money, it is their budget, and they have authority over their budget (Individualized budgets). They are the boss of their own staff and make decisions on who they hire, fire, and what they want to pay them. We think people should have control of their own home, so we don't own any property. Instead, we support people to rent and buy their own homes. If a person decided they didn’t want us to work for them anymore then it is their home, and their money.

Value 3 – Finding Gifts and Strengths: Helping people figure out who the person is, and what they have to offer the world. What is the person’s gifts? What is their passion? This is helping people see themselves differently, and helping other people to see the person differently (mindset shift from looking at deficits).

Value 4 – Places to Share Gifts: We help people to find the place to share their gift. These are places in the community where the person is valued as an asset. This is the reason we made a decision not to have offices (because of their commitment to helping people finding places in community).

Value 5 - Meaningful Relationships: We support people to have meaningful relationships in their life (Patti views this as the most important value). Good paid relationships are critical, but beyond that it is important to have non-paid relationships – Friends. The stats are show that loneliness kills more people than smoking. When we look back on our lives it is the people you loved, and the people who loved you that you remember. With disability, it is often a small number of people that you love and who love you, and it is usually our family.

On the podcast, Patti shares several stories of amazing people she has worked with and how they embraced these values to live ordinary lives in community.  One of Patti’s stories is about a 79-year-old woman moving out of an institution, after 50 years of confinement to the institution grounds, and creating her life. It is an incredible story that I recommend listening to.

A big thank you to Patti for coming onto the podcast/ blog and sharing her insights on creating the environment for people to succeed in building a full and meaningful live. I encourage you to reach out to Patti if you would like to explore this thinking for your organization or family.

Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.

Love & Respect,

Eric

Resources:

Website: Neighbours-inc.com

Education and stories: Neighbours-international.com (video + writing)

Maps and Paths: Click Here

Email Patti: [email protected]