Empowering Ability Podcast

#103: The Power of Support Circles for Your Loved One

Download a FREE copy of my “Life Planning 101 Guide” to start your loved one's Life Plan Now:  https://www.empoweringability.org/life-planning-guide/

 

In this story, I share Gabby's journey from loneliness to empowerment. Just like you, Gabby's mom, Jane, wrestled with the worry of who would be there for her child when she couldn't. 

That's where support circles stepped in.

Come along as we analyze the power of support circles and how they can change your loved one's life. From building meaningful relationships to fostering independence, the possibilities are endless.

Learn how Gabby's life transformed with just five caring individuals by her side. Experience the happiness, growth, and sense of belonging that reshaped Gabby's world.

Ready to take the first step toward creating a brighter future for your loved one? Click to listen now and discover a path filled with hope!

 

Don't forget to grab your free copy of the Life Planning 101 Guide to get started. Let's empower your loved ones to live their best lives. Get Guide: https://www.empoweringability.org/life-planning-guide/

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About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.

🎁 Download my FREE copy of my “Life Planning 101 Guide” to start your loved one's Life Plan Now:  https://www.empoweringability.org/life-planning-guide/
🎙️ Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
🌐 Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
🔔 Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
👨‍👩‍👧 Join the Empowering Ability Family Members Only Facebook Group:   https://www.facebook.com/groups/empoweringabilityfamilygroup

#102: Strengthening Your Loved One’s Safety Net & Building Their Support Circle

Download a FREE copy of my “Life Planning 101 Guide” to start your loved one's Life Plan Now:  https://www.empoweringability.org/life-planning-guide/

To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll

As a caregiver, you're the backbone of support for your loved one with a disability. But what happens when you're not there? 

This fear might haunt many families, and we'll tackle this crucial question in this episode.

Most paid support workers won't be there for your loved one, which has been our family experience.

They usually come and go, leaving little lasting impact. 

So, who's the person you should be trusting with your loved one?

It's the neurotypical people in genuine relationships with your loved ones. They stick around because they care. But how do you find them?

Listen to the episode to learn more.

Don't forget to grab your free copy of the Life Planning 101 Guide to get started. Let's empower your loved ones to live their best lives. Get Guide: https://www.empoweringability.org/life-planning-guide/

🚀 If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
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About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.

🎁 Download my FREE copy of my “Life Planning 101 Guide” to start your loved one's Life Plan Now:  https://www.empoweringability.org/life-planning-guide/
🎙️ Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
🌐 Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
🔔 Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
👨‍👩‍👧 Join the Empowering Ability Family Members Only Facebook Group:   https://www.facebook.com/groups/empoweringabilityfamilygroup

#101: Motivating Your Loved One with Disability and Overcoming Learned Helplessness

Download a FREE copy of my “Life Planning 101 Guide” to start your loved one's Life Plan Now:  https://www.empoweringability.org/life-planning-guide/

Let me share a personal story about my sister, Sarah. Despite initial challenges, she now lives independently. Initially, I thought Sarah was lazy, but I was wrong. She had learned helplessness. So, I shifted from telling her what to do to coaching her through tasks. From making breakfast to doing laundry, Sarah gained confidence. Watch now for strategies to empower your loved one and nurture their independence.

Don't forget to grab your free copy of the Life Planning 101 Guide to get started. Let's empower your loved ones to live their best lives. Get Guide:  https://www.empoweringability.org/life-planning-guide/

🚀 If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
---
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.

🎁 Download my FREE copy of my “Life Planning 101 Guide” to start your loved one's Life Plan Now:  https://www.empoweringability.org/life-planning-guide/
🎙️ Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
🌐 Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
🔔 Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
👨‍👩‍👧 Join the Empowering Ability Family Members Only Facebook Group:  https://www.facebook.com/groups/empoweringabilityfamilygroup

#100: Discover 4 Strategies to Get MORE Support for Your Loved One with a Developmental Disability/ Autism

Download a FREE copy of my “Life Planning 101 Guide” to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/

To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll

Are you looking for ways to get more support for your loved one with a disability? 

You're not alone. 

In this episode, I'll share a heartfelt story and reveal 4 proven strategies to help you navigate the journey ahead.

Here's what you'll learn:

1. The importance of asking for help and how small requests can make a big difference.
2. Why do things WITH your loved one, not just FOR them, promotes independence and prevents burnout.
3. How technology can enhance your loved one's independence and reduce caregiving responsibilities.
4. The significance of researching available paid support and how it can prevent caregiver burnout.

Don't miss out on these empowering approaches! Click the video to watch now and take the first step toward a brighter future for your family.

Ready to make a difference in your loved one's life? Listen to the podcast and discover how we can build a brighter future together.

About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you make sure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome ordinary life for your loved ones, ensuring their care and support now and in the future.

🎁 Download my FREE “7 Strategies for More Independence” guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
🎙️ Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
🌐 Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
🔔 Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
👨‍👩‍👧 Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup

#098: Why a Special Needs Trust is NOT a Good Enough Plan: Do These 3 Additional Things

Worried about what's ahead for your loved one with a developmental disability?

It's totally okay to feel unsure, especially when you are trying to plan for their future.

In this episode, I share Jamie's story—a powerful reminder of why just having a Special Needs Trust might not be enough.

Jamie's parents did what they thought was best and set up a special needs trust, but when they were gone, Jamie's life got tough. It took her 3 years to find her way again. I don't want that for you or your loved one. That's why I'm talking about three necessary steps you can take alongside a Special Needs Trust. These steps can really make a difference for your loved one's future, even without you.

I also describe what a Special Needs Trust (USA) and Henson Trust (Canada) are, and why they are important to set up for your loved one with a disability.

Come join me in the video as I explain these steps. Let's face the future together with hope and possibility.

 

🚀 If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll

 

About Eric Goll:

Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome ordinary life for your loved ones, ensuring their care and support now and in the future.

 

🎁 Download my FREE copy of my “Life Planning 101 Guide” to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/

🎙️ Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast

🌐 Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/

🔔 Subscribe to YouTube channel: https://bit.ly/YoutubeEricGoll

👨‍👩‍👧 Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup

#084: Using Technology to Improve the Safety of your Loved One

In this podcast, you'll discover the power of two supportive technologies for individuals with developmental disabilities. I’ll show you the potential of GPS tracking and video monitoring, which can create a safety net for your loved one and promote independence.

I also address privacy and consent when using these technologies, while acknowledging the positive impact these tools can have on your loved one’s life.

You’ll learn about user-friendly options like “Find My iPhone” to more sophisticated devices like AngelSense Tracker. Additionally, I explore real-time support through video doorbells and peephole cameras, offering peace of mind, especially when your loved one is home alone.

As you plan the future for your loved one, embrace technology to increase safety and independence.

 

With gratitude,

Eric

 

 

Are you ready to boost your loved one's independence?!! Click the link below to download your free guide.

Download Your Guide: 10 Tech Tools - To Transition Towards Independence

#083 A Lifeline in Your Pocket: Smartphones & Disability

Are you a caregiver for your adult child with a developmental disability? Do you ever feel overwhelmed and scared, wondering who will love and care for your child when you’re no longer able to?

 

I know your fears and struggles, and I’m here to help you discover the power of smartphones in redefining communication, safety, and independence for loved ones with developmental disabilities.

I initially doubted the impact of a smartphone on my sister's life, but it became a gateway to her independence.

In this podcast, I explore how smartphones enhance independence through communication, safety, and organizing life.

Together, we can create a plan for their safety and care in the future. 

 

Are you ready to boost your loved one's independence?!! Click the link below to download your free guide.

Download Your Guide: 10 Tech Tools - To Transition Towards Independence

#047: Mindshift & Enlightened Attentiveness, with Michael Kendrick

Learn how people with disabilities have lived, how they are living, and what we have learned from renowned consultant Michael Kendrick.

 

[4-minute read, 65-minute listen]         

 

It is my pleasure to bring to you episode #047 with well-known international consultant in Human Services, Michael Kendrick PhD. Michael is involved in consulting, education and evaluative work with many governments, private agencies, advocacy groups, community organizations, universities and colleges across the globe. His work has involved training, evaluations, strategic planning, critical problem solving and confidential advice in the areas of mental health, disability and aging with an emphasis on persons requiring long term support. Michael has also developed and delivered the Optimal Individual Service Design (OISD) course that is the most in-depth leadership level educational program available internationally at present. [I’ve taken Michael’s OISD course, and I personally recommend it.]

 

In this episode of the Empowering Ability podcast Michael Kendrick answers the questions of; How have people with disabilities lived?, How are they living today?, and, What have we learned? Michael also shares how we need to have a Mindshift to higher expectations and normalization for people disabilities, and also how we need to have enlightened attentiveness when with people. 

 

This blog paraphrases segments of my conversation with Michael, if you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below or searching ‘Empowering Ability’ on your podcast player, such as, iTunes, Spotify, Google Play, etc..

 

 

 

How have people with disabilities lived? and, How are they living today?

 

Paraphrasing from the podcast Michael shares:

 People [with disabilities] have lived under different circumstances depending on what point in history, and in what culture. It is clear that people with disabilities have been treated as inferior or of less value. They have less capacity than their brothers or sisters and so on, and large numbers of people see people with disabilities as negative. This has led to people with disabilities being treated as less human. [For example] When getting medical procedures people [with disabilities] didn’t get the same anesthetic because they were different than everyone else. Also, there are people aborting people with disabilities – this is a very strong statement that they are unwanted and seen as a burden.

 

They [people with disabilities] live in a world of assumptions created by other people, which has big impacts on what kind of life they get to live. Everyone is subject to assumptions about them. There are two kinds assumptions; assumptions that liberate them and assumptions that hold them back. There was a time when it was believed people with disabilities couldn’t have regular jobs in the community, and now there are jurisdictions where 3 out of 4 people with disabilities have jobs in community. There was a time it was thought people with disabilities couldn’t be in regular classrooms. We see this now. In these examples a 'mindshift' has taken place. When we change our mind, we change our world. These mindsets have shifted in the last 2.5 generations, mostly in western societies, but this is moving into other societies.

 

This shift started in Sweden and Denmark with the Normalization principal; simply [the idea] where devalued people should be treated like everyone else. This was later translated into the theory of social role valorization. Life will get better for people with disabilities when we pay attention to what is going on in our minds and we shift our perceptions.

 

There is a belief that people would be better off segregated. If they are not with us, then they are somewhere else. They would be happier with their own kind, their own kind is other disabled people. Segregated sport, housing, schooling, work – there is segregated everything. We all need support to be successful, especially in new environments and social contexts.

It is a myth that people with disabilities can’t succeed in inclusive settings.

 

 

 

What have we learned?

 

We have been too conservative and cautious about the true potentials for people with disabilities. The pessimism [of others] is the problem, not the people with disabilities.

 

 

“If you treat an individual as he is, he will remain how he is. But if you treat him as if he were what he ought to be and could be, he will become what he ought to be and could be.”  

 

- JOHANN WOLFGANG VON GOETHE

 

 

 

How do we hold higher expectations for people with disabilities?

 

If something benefits the rest of the world, it will benefit people with disabilities as well.

 

The application of this is called Culturally Valued Analogue (CVA). Simply, provide the same options that the rest of us have available to us. We should always do the normal thing and make it available to people with disabilities; the same activities and pastimes.

 

Include people with disabilities in new experiences and see what they might enjoy. Each should have the opportunity to build an interesting life for themselves. This is why the individualized option makes sense for people. This is why it is regressive to give people the same options [for example, group homes].

 

If people haven’t had opportunities, create new opportunities for that person. It is never too late. If people have become deprived, it is ‘overcomable’. The caution is to do it at the pace of the individual. An exploratory journey of life tasting. Even if you have been held back, you can make up for it.

 

 

Capacity for Decision Making

 

Some people think disability means they have no capacity at all. A truer appraisal of all of us is that we all lack capacities of one kind or another to some degree. People with disabilities certainly have capacity. They can make decisions on their own behalf, and is it better that they do that, because they will learn how to make good decisions and they will experience the consequences of the decisions that didn’t turn out to be so good - like everyone else. That is how you learn about decision making, is making decisions and practicing decision making. You can safeguard people and their vulnerabilities with decision making. They can pick their own supporters to help them with decisions in areas they feel they need support in making decisions.

 

People with disabilities rebel against not being able to be decision makers because they feel things are being done to them or on them, rather than with them. People are also easier to get along with when people [they] are decision makers because they don’t feel threatened, and that people [others] are there in a supportive way. Often behaviors will disappear.

 

There might be times were people with disabilities might not make good decisions. It would be neglectful not to support people, even when they don’t ask for it. The person might be unwilling to take support, but there are times where people can intervene, but it must be done respectfully. If people are concerned about us, they ought to be able to share their concerns about our decisions. You are not giving up the ability to influence, but you are giving up the control of the individual.

 

 

On the podcast, Michael discusses his views on circles of support, and how they can benefit an individual. 

  

 

Why is investment in group homes an outdated idea?

 

In summary:

 

1. It is based on the assumption that people with disabilities should live together. We [everyone else] chose to live with people we are compatible with.

2. It is forced shared living.

3. It creates the idea that it is the only option for people.

4. There are much better options. Individualized one person at a time is much better because it gives you much more choice.

 

Many jurisdictions have a freeze on the growth of segregated living.

 

 

 

Michael’s Challenge To Everyone:

 

Give people with disabilities quality attention when you are with them. If you pay attention to people a lot of things about people and their lives will become more clear to you. Pay attention. Let us get instructed by them, simply by knowing the person and getting to know them better. Be really attentive to learning who they are and what their life is like. We don’t know where this will take us, but this will raise our consciousness and change us for the better. One great shortcoming we all have is that we don’t take people with disabilities seriously enough. I think the antidote to that is ‘enlightened attentiveness’ to the person and let it go where it goes. It is the most deeply respectful thing we can do, is to pay attention to a human being.

 

On the podcast, I give my perspective on how we can practice enlightened attentiveness and I share a story of my sister (Sarah) which is a good example of my 'mindshift' of doing WITH Sarah, instead of FOR Sarah. If you are interested in my insights take a listen to the podcast.

 

A big thank you to Michael Kendrick for coming on the podcast and sharing his wisdom. If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.

 

 

Love & Respect,

Eric Goll

 

 

 

 

Resources:

 

Video Insights from Michael Kendrick: Click here for youtube videos

#046: Re-Writing Our Stories, with Brian Raymond King

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!

 

Click Here To Listen on iTunes

#045: Uncovering the Truth: We are Oppressing People with Disabilities, With Lynne Seagle

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!

 

Click Here To Listen on iTunes

 

#044: Resiliency and Compassion, with Joscelyn Duffy

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.

 

1. Simply have compassion for yourself.

2. 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!

 

Click Here To Listen on iTunes

#037: Redesigning the Disability Service Organization

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: Pattiscott@neighbours-inc.com

#034 How to Build Intentional Community, with Janet Klees and Linda Dawe

Learn what intentional community is, and the building blocks to build your own intentional community.

This week, I am re-sharing an important conversation from Episode #022 on Intentional Community, with Janet Klees and Linda Dawe. 

Janet Klees has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Until recently, she has been coordinator with the family-governedDeohaeko Support Network for over 20 years. She is the author of three books which are directly rooted in the Deohaeko experience, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world. Currently, Janet is the Executive Director with a family support organization, the Durham Association for Family Respite Services.

Linda Dawe is a founding member of the Deohaeko Support Network– a family led collective that has embodied diversity, inclusion and community since its inception in the mid 1980’s.

 

 

Intentional Community

There is a lot of discussion in the disability sector about what community is and the definitions can vary widely. The conversation can range from placing groups of people (such as people with a disability and seniors) together in a building to support each other, to a diverse group of individuals coming together to build relationships and share their gifts with each other.

Amazing community builder, Linda Dawe shares what she has learned about building an intentional community at Rougemount over the last 25 years:

“Intentional community is not something that you measure - it is something that you feel. It isn't a thing, it is in the hearts of people, and people embrace it to different degrees. One of the things that was important in creating the intentional community at Rougemount was the diversity in the residents that represented the actual community.  Not placing groups of people together, such as seniors and people with disabilities. Intentional community at Rougemount started out as a grand thing, but simply it is just being in relationship with each other. People living well together. It requires effort, consciousness, and core people to hold the values of the community.

Janet Klees adds: “Simply put, community is being a good neighbor. At Rougemount people look for opportunities to be good neighbors and then talk about it, and hold up examples of it.

Intentional community isn't a building - it is a mindset! We can take the ideas with us, and many groups have. People have come into Rougemount and have seen how it works, and then brought it into neighborhoods with single family homes, and brought it into condo buildings. Rougemount is just an example of how it can work.

 

 The Key Takeaways for me are:

1. Building Intentional Community starts with rich diversity and upholding neighbourly values.

2. Fostering Intentional Community requires us to get a common understanding of each other, and through that understanding building trust and respect. From here we can show love to each other in small little ways, and uphold those acts of love.

3. Be intentional in creating opportunities for people with disabilities to build relationship. Do not group them in housing or support.

 

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:

Purchase These Books to Learn More Lesson's from Deohaeko:

"We come bearing gifts" by Janet Klees 

"Our Presence has roots" by Janet Klees

 

Learn more about Deohaeko: Click Here 

 

Learning events In Durham Region: Click Here

 

Book a study tour to learn about Rougemount and Deohaeko: Click Here

 

Contact Janet Klees: janet@legacies.ca

 

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

#026: A 4-Part Strategy for Building Natural Relationships, With Janet Klees

We welcome Janet Klees back to the podcast/ blog this week discuss building natural relationships, bio medical approaches to well-being, and the different approach her organization, Durham Association for Family Respite Services, takes to supporting families. Janet has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. She is the author of three books which are directly rooted in her experience with the Deohaeko Family Support Network, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world to present the unique options of this family group.

 

So how is Durham Association for Family Respite Services different? Janet explains that often a family’s first question is: “Can I pay you to do that for me?”. Janet’s answer is: “Well no. But I will teach you, and give you practical supports along the way.” The organization believes so strongly in the approach of empowering individuals and families to make their own choices and keeping control of their lives that they are changing their name to the Durham Association for Family Resources and Supports.

 

The organization started 35 years ago as a family respite organization, and has since evolved to focus on full life planning, and helping families to think about what a good life is. The organization is grounded in Social Role Valorization (SRV) methodologies and some of the services they offer are listed here. I am listing these services for you because the organization frequently hosts free workshops that you can attend, and they are open to having a conversation with you – even if you are from outside of the Durham Region.

 

• Facilitation and planning; helping people imagine what a good life is, creating a plan and putting the plan into action.

• Support recruitment; helping people recruit good support people, and providing a minimum a one day training to make sure they understand a SRV style of support.

• Administrative support; templates and forms to make hiring support easier.

• Free Training; workshops for families and supporters to learn what has worked to help people with disabilities create a good life.

• Family to family learning; families get together to talk about themes, such as housing and bio medical (non-medication) approaches.

• Brokering and financial supports; helping families by doing the administrative functions with individual funding dollars.

 

 

Building Context for Relationships

BCR is a Strategy that was figured out while working with the families of Deohaeko Family Support Network. The parents were very clear that there was need to have relationships in their son’s and daughter’s lives. The group looked at what they were doing right, instead of what they were doing wrong, and this pattern emerged. What they noticed is that relationships had evolved between people with a disability, and people that do not have a (visible) disability.

 

The Deohaeko Family Support Network had taken a social role valorization (SRV) approach. Janet provides an overview of SRV:

“The SRV framework says that human beings are very judgmental by nature. We make quick judgements about whether you are like me, or you are weird and different. We can take this human tendency and use it for the good by developing positive roles, such as the Blue Jays fan, the dog walker, etc.. This strategy has helped people create positive roles, and the roles are like a glue. In the role you end up meeting other people who see you in a positive way, and those people end up being open to a different kind relationship in your life. We don’t group people together – when we group people with a disability all (other) people see is the disability. They don’t see the person for who they are and the positive roles they have. Often, families haven’t thought about their son or daughter as a contributing member. We haven’t thought about what son or daughter’s job might be.”

 

Janet provides a larger overview of SRV in this blog.

 

 

BCR: A 4-Part Strategy to Create Situations Were Relationships Are More Likely to Arise.

 

Janet explains:

1) Find ordinary places where people share your interest. Follow the interests of the person and think about where other people are that are interested in your interest. For example, if your interest is dogs other people interested in dogs are at: the dog park, dog training, walking dogs, dog clubs, stray dog associations, etc.. We are looking for typical and ordinary places in community, not places segregated for people with a disability.

2) Go to the same place frequently. To build relationships you need to be among the same people regularly. Pick one place, use your 1 to 1 support to support, and be there often (ex. Once per week).

3) Find a way to contribute. You want people to have a role in those places in community. So often people with a disability are just spectators. If you look at a music festival most are just spectators, but there are so many opportunities to have a role as a volunteer (ex. free samples, filling water bottles, assistant to the golf cart driver). This gives the person a role, and makes relationship easier. 

4) Other people have to be present. Supporters are a bridge to relationships with others, and they need to play a role in facilitating relationships. The paid support person can be looked at as the friend. They are being paid and likely will not be there for that person’s entire life.

  

BCR In Action:

On the podcast Janet shares several stories of how people have used the BCR strategy to build relationships. You can listen to the podcast to hear them all.

 

Paraphrasing from the podcast, Janet shares Johnathan’s story:

“Johnathan has a small shredding business that he takes it into work places. He was working at the local police station, and really enjoyed it. He felt like he was important, and he felt like he belonged. That police station was closed down, but hey really valued Johnathan so he was invited to the big regional police station to continue his role. After 3 weeks at the regional police station Johnathan said he didn’t want to go anymore. They had put him in a backroom alone to do his shredding, and he didn’t have his relationships anymore. The shredding business was just a vehicle for relationships. When the relationships weren’t there, he no longer wanted to work. They talked to the police station, and Johnathan moved to a room where he was with people and he enjoyed his job again – because of the relationships.”

 

Bio- Medical (non-medical) Approaches

In a recent study, led by Yona Lunsky, psychologist at Centre for Addiction and Mental Healthfound that thousands of people with down syndrome, autism and other developmental disabilities are being prescribed anti-psychotic medication despite a lack of evidence that the drugs actually help them. (Reference: Toronto Star)

 

This highlights the importance of thinking about bio-medical approaches to well-being for people with disabilities. The Durham Association for Family Respite Services has started a family group to discuss this, and they are learning about the impacts of diet, exercise, and mindfulness (of supporters) as alternatives to medication. In my opinion, these are common sense approaches that can be explored at little cost that can get down to the root cause of symptoms or behaviors that a person is experiencing. Peter Marks of Conscious Care focuses in this area, and you can find additional resources on his website. We are hoping to have Peter on an upcoming episode to learn more about these approaches.

 

I thank Janet for coming onto the podcast and sharing her experience in helping people with disabilities to build relationships, and for getting us thinking about non-medical approaches to well-being.

 

If you enjoyed this blog/ podcast  Subscribe to our mailing list and get a new episode every week!

 

Love & Respect,

Eric

 

  

Resources:

Purchase These Books to Learn More Lesson's from Janet Klees:

"We come bearing gifts" by Janet Klees 

"Our Presence has roots" by Janet Klees

 

Free learning events In Durham Region: Click Here

Durham Association for Family Respite Services  Monthly newsletter: Click Here

Housing website: imagininghome.ca

Peter Marks: Conscious Care 

Contact Janet Klees: janet@legacies.ca

 

 

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

#022: Lessons in Building Community, Housing, and a Good Life, with Janet Klees and Members of the Deohaeko Support Network

Hear the story of the Rougemount Housing Co-operative & the Deohaeko Support Network, learn what intentional community is and how to build it, learn the key factors that made Rougemount a success for people with a disability, and get a different perspective on creating a home for people with a disability.

This is part 4 of 6 of the mini-series on housing for people with a disability on the Empowering Ability podcast. In this episode, I bring you the story of Rougemount Co-operative Housing, and the Deohaeko Support Network– a co-operative housing project led by families that has embodied diversity, inclusion and community since its inception in the mid 1980’s. I had the pleasure of visiting the community for a guided tour, and I sat down to interview 5 members of the community. I

Narrating the story of Rougemount and Deohaeko is Janet Klees. Janet has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Until recently, she has been coordinator with the family-governed Deohaeko Support Network for over 20 years. She is the author of three books which are directly rooted in the Deohaeko experience, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world to present the unique options of this family group.  Currently, Janet is the Executive Director with a family support organization, the Durham Association for Family Respite Services, with hopes of sharing her learning with a wider group of families in Durham Region and trying to affect larger scale supports and changes for families.

  

The Story of Rougemount and Deohaeko

 Paraphrasing from the podcast Janet shares:

 “In the middle of crisis, there is always opportunity. In the 1980’s in the Greater Toronto Area there was a housing crisis, much like there is today, and a group of 7 families came together with the goal of creating ordinary life in ordinary neighborhoods for their sons and daughters with a developmental disability.

 At the time, the Federal Government of Canada and Provincial Government of Ontario was funding Housing co-operatives where the people don't own the units, but there are permanent tenants as long as they follow the rules of the co-op set by the co-op board. It just so happens that Rougemount was the very last co-operative housing project that was funded by the Canadian Government.

 The building was constructed with 105 units, where the 7 sons and daughters with a disability would live in this community. There are approximately 200 residents living at Rougemount and the residents were selected to represent the ethnic, demographic, and socioeconomic makeup of the surrounding region with no more than 10% of population having a disability, which is natural in this region (as it is in most areas).

 The founding families of Rougemount then created the Deohaeko Support Network, which is a group of families that think about the natural and paid supports for their 7 sons and daughters in the community.”

  

Intentional Community

 There is a lot of discussion in the disability sector about what community is and the definitions can vary widely. The conversation can range from placing groups of people (such as people with a disability and seniors) together in a building to support each other, to a diverse group of individuals coming together to build relationships and share their gifts with each other.

 Amazing community builder, Linda Dawe shares what she has learned about building an intentional community at Rougemount over the last 25 years:

 “Intentional community is not something that you measure - it is something that you feel. It isn't a thing, it is in the hearts of people, and people embrace it to different degrees. One of the things that was important in creating the intentional community at Rougemount was the diversity in the residents that represented the actual community.  Not placing groups of people together, such as seniors and people with disabilities. Intentional community at Rougemount started out as a grand thing, but simply it is just being in relationship with each other. People living well together. It requires effort, consciousness, and core people to hold the values of the community.

 Janet Klees adds: “Simply put, community is being a good neighbor. At Rougemount people look for opportunities to be good neighbors and then talk about it, and hold up examples of it.

 Intentional community isn't a building - it is a mindset! We can take the ideas with us, and many groups have. People have come into Rougemount and have seen how it works, and then brought it into neighborhoods with single family homes, and brought it into condo buildings. Rougemount is just an example of how it can work.

 On the podcast, Rougemount residents and supporters Donna Mitchell (25 year resident, Deohaeko member), Tiffany Dawe (25 year resident, Deohaeko member), Shirley Brown (25 year resident), and Sorida Fonseca (Supporter to Tiffany Dawe) share their story of intentional community and community contributions. Through their voices it is evident that everyone is an equal contributor to this community. People with a disability aren’t viewed as a burden, they are valued as equals in the community that provided significant contributions just like everyone else.

 

Lessons from Deohaeko

 5 Essential tips in shaping aspects of the community, invisible support, and making principled decisions that ensure that people are seen as ordinary neighbours sharing much common ground.

*As described by Janet Klees on the podcast

1. Diversity. Dedication to supporting, shaping, and holding a very typical community - less than 10% disability. It is the diversity of the co-op that makes it work. Diversity first before building intentional community.

 2. Where people lived. The people with disabilities living at Rougemount live in apartments across the building, not segregated on one floor. This allowed people to be known by their individual identity, not just by the identity of their disability.

3. Support identified by their name, and deflected to person and their interests. We helped new support workers be thoughtful on how they introduced themselves. When support introduced themselves they 1) identified themselves by their name only, 2) directed the conversation back to the individual they were supporting, and 3) spoke to that individual’s interest. (Example: “Hi I am Sorida, I'm hanging out with Tiffany today.  We are headed to the art gallery today - have you seen her art? You should come over to her apartment sometime and see her art.”) 

4. Discouraged segregated activities. When new committees were starting we had lots of conversation about who would participate. We thought about who from Deohaeko would participate in committees and chose not to have too many people with a disability on one committee because it then becomes difficult for people to build relationships. 

5. No shared support. The reason is that the families didn't want people to see the same supporter with different people with disabilities because then people look at people with disabilities as all the same. Rather than saying different people need different kinds of support. Even in a crisis support wasn’t grouped. We figured different layers of support that would come forward in these situation. We really focused on people having their own unique and individual lives.

 

*All of this is to focus on creating natural relationships, and it works.

  

Creating Housing Solutions Today

Janet has carried the thinking from her work with Deohaeko forward into her work today with Durham Association for Family Respite Services.

Janet shares:

"Housing is a community issue, not a disability issue. In our most recent housing project, we partnered with Brockville and District Association for Community Involvement on a housing project called, ‘Housing is a Community Issue’. We asked families who were interested in housing to join us in discovering housing solutions together and 35 families showed up. This is incredible because we told the families up front that we don’t have any money to give. It shows how understanding families are that they are going to be part of the solution. 

Even in this housing crisis, people are still finding housing. With our project, we are thinking about what are the ways that people are finding to build, buy, rent, and to figure out housing. Then asking, ‘why can't these ways fit families that are looking for housing?’

This is not a Ministry of Community and Social Services (MCSS) issue, it belongs with housing. This is an affordability issue, not a disability issue. If people need renovations it is a cost issue. We need to ally ourselves with all the people that are struggling for housing. There are organizations like Habitat for Humanity, and Options for Homes that we can ally with. If MCSS is involved in housing they build a service, not a home. Families only have to think about their own son or daughter, and think about works best.”

 

In a recent housing forum in Durham Region, 70 families gathered to discuss person centered housing for their sons and daughters. The group compiled a list of 7 recommendations for the Government of Ontario, and for all of us to think about as we work toward creating a good life for people with disabilities. 

1. Home, housing and support are 3 different things and bust thought of separately.

2. Most housing challenges are affordability, not disability.

3. People with disability contribute to their communities, they are not a burden.

4.Getting good housing and support doesn't mean taking away the individual’s control of their life 

5.Providing renovation dollars allows families to be creative with their current home today (stabilize current situation), and allows for flexible housing in the future.

6. Stop funding congregated mega projects for people with disabilities, and disabilities / seniors. Commit to typical housing options and neighbourhoods.

7. Where there are Families that are willing to create a home in community the government needs to support with resources. These are cheapest, most effective models, and they are currently the least funded. 

There are so many things I am taking away from my time with Janet, Linda, Tiffany, Shirley, Donna, and Sorida and grateful to them for sharing their experiences, and what they have learned.  

  

The Key Takeaways for me are:

 1. Building Intentional Community starts with rich diversity and upholding neighbourly values.

 2. Fostering Intentional Community requires us to get a common understanding of each other, and through that understanding building trust and respect. From here we can show love to each other in small little ways, and uphold those acts of love.

 3. Housing and support are best viewed as separate.

 4. Be intentional in creating opportunities for people with disabilities to build relationship. Do not group them in housing or support.

 5. As families, we need be a part of the solution. Design our lives, take control, and ask for help. We assume that someone is going to take care of things for us, but that someone is never going to come.

 

To end, here is a beautiful quote from community builder, Linda Dawe “Everyone needs good housing. Once they have good housing they are able to experience good things in their life.”

Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!

Love & Respect,

Eric

 

Resources:

 

Purchase These Books to Learn More Lesson's from Deohaeko:

"We come bearing gifts" by Janet Klees 

"Our Presence has roots" by Janet Klees

 

Learn more about Deohaeko: Click Here  

Learning events In Durham Region: Click Here 

Book a study tour to learn about Rougemount and Deohaeko: Click Here

Contact Janet Klees: janet@legacies.ca

 

  

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

#019: Housing Mini Series Part 3/6 -Community Care, With Jackie Goldstein

The Anthony Bourdain of the community care world, Jackie Goldstein, is our guest this week. Jackie is an observer, educator, author and speaker on community care support models. Jackie's book, 'Voices of Hope For Mental Illness; Not Against, With', shares the stories of many community care models across the United States, and the story of Geel Belgium. On this podcast, we discuss the story of Geel Belgium, Broadway Community Housing (BCH), and Gould Farm. 

 

Geel Belgium

The story of the Geel Belgium's foster family community care model started as far back as the 13th century, and it still continues today! This makes Geel one of the oldest and largest community care models in the world. The foster family system evolved in Geel from the legend of St. Dymphna; the St. of loss causes. You can hear Jackie tell the fascinating legend of St. Dymphna on the podcast.   

Paraphrasing from the podcast Jackie explains, "In the Middle ages, the Church is where people went to be healed. Word spread that there was a St. in Belgium that could heal people, and people started coming into Geel to be healed. Pilgrims started with 9 days of praying, and sometimes this worked because of a placebo effect. If praying didn't cure their illness, the church asked the towns people to take these pilgrims into their homes. Geel was an agricultural community so there was a deal made between the town and the pilgrims that they would work on the farm, and in exchange live in the home. This became the model, and the community thought of themselves of a healing community. It was a source of pride, there was no stigma. If a Geel resident didn't have a boarder, people wondered why - where you not good enough? It is not the way we think of a system starting today, this system evolved. However, the foster family system in Geel teaches us that by understanding the needs of the individual, and the resources of the community we can find solutions."

 

Broadway Housing Communities

Ellen Baxter was an observer of the Geel foster family model and saw the need of individuals in New York so she raised funds, and started Broadway Housing Communities (BHC). Her first housing initiative opened in 1986 for 55 homeless single adults. Shortly after in 1990 BHC opened an apartment for homeless families and adults (many of which had a mental illness). Jackie explains " At the time this was against societal norms, people thought that kids shouldn't be exposed to people with mental illness. However, the model proved to be effective. This model also fostered the creation of community by offering everything that was available in the building to the neighbourhood. In a more recent project, BHC has focused on poverty because homelessness had become more of a problem. Residents were selected into the building on a lottery system - some based on poverty, and some based on mental illness."

 

Gould Farm

Beginning in the early 1900's Mr. Gould opened his working farm to people in need, starting with people that were recovering from surgery and evolving into accepting people with disabilities. Jackie had the opportunity to stay at Gould Farm and she shares " Gould Farm is a self sustaining farm, now primarily hosting guests with an intellectual disability. Everyone who works at Gould Farm lives at Gould Farm. This includes the staff and their families, even their kids. It is hard to tell who is a guest and who is staff. It is a community."

  

What Jackie Has Learned

Jackie shares that the subtitle of her book, 'Not against, with', comes from the Robert Frost quote, "Always fall in with what you are asked to accept, take what is given, and make it over your way. My aim in life is always been to hold my own with whatever is going. Not against, with." 

What Jackie has learned through her observations of many communities is that you can take any community and you can assume that there is a group of people that need support. You can then ask two questions:

What kind of support do they need? (The individual, not a group of people)

What resources are available in the community?

Then you take the 'Not against, with' approach to find the best solution for the individual by working with individual's abilities, and not ignoring their disability.

I thank Jackie for coming onto the podcast and sharing her observations and insights on community care, and creating a home for people with a mental illness and disability. If you are interested in learning more about community care models I recommend that you pick up Jackie's book, she would also be happy to speak to your event. 

Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribe to the mailing list to get all 6 episodes sent directly to your inbox!

 

Love & Respect,

Eric

 

  

Resources:

 

Email Jackie: jlgoldst@samford.edu 

 

Jackie's Book, 'Voices of Hope for Mental Illness: Not Against, With'

 

 

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

#013: Housing for people with a disability Part 1 - Creating a home, with Marg McLean

 

This is Part 1 of a 6 part mini-series on housing for people with disabilities. We are exploring the housing issue for people with disabilities, new innovative ideas, and success stories from around the globe. Subscribe to the mailing list to get all 6 episodes sent directly to your inbox!

 

This week's guest on the Empowering Ability Podcast is Marg McLean, Executive Director of Community Living St. Marys. Marg and the Community Living St. Marys team have been helping people with a disability create their home, and support solutions since the 1980's when people were leaving institutions. 

 

The Problem:

 As of 2016, the Ontario Ministry of Community and Social Services was supporting approximately 18,000 people with a developmental disability in group homes and other supported living, and an additional 9,700 people were on a waiting list for residential supports. So, the reported demand for residential housing support is over 50% greater than the supply. The demand is likely higher than reported because it obviously doesn’t include people who have not registered for the list. We will be exploring this problem in other parts of the world as the housing mini-series continues.  Reference: (The Toronto Star, 2016)

 

This is a massive line to wait in as supply of residential homes is increasing at a much slower pace than the demand for people with a developmental disability in need of housing.

 

So, should families be planning their own housing solution?

Marg shares that people are going on the waitlist without thinking, talking, and planning what an ideal home looks like for them. (Note: This is exactly what my family did at the start of our housing search for my sister.) What works well is for families to come up with a vision of what would be a good home in community.

 

 When thinking about your home, there are 4 questions you need to answer:

 I’ve created a FREE workbook to help you create your vision of the best housing solution for you and to take the first steps toward implementing this solution. Click Here to download the free workbook.

 

Marg shares the stories of Michael, Bill, Gord, and Kayleigh on the podcast. Below is a short overview of the home they have created, listen to the podcast and watch the Community Living St. Marys videos to hear their full stories.

 

Success Stories of Creating Home:

 Michael’s story – In his mid 20’s Michael lived in a rural area with his family, and was looking for opportunity to move out of his family home. Michael’s family bought a duplex in a small city, where Michael attended school and has access to transportation. Michael and his housemate live in the upper level and his supportive neighbours, Leah and her mom, live in the main level unit. The duplex is paying the mortgage, and when the mortgage is paid off it will enhance his Registered Disability Savings Plan (RDSP).

 

Note: Housing trusts can be explored if you are considering home ownership.

 

Bill’s story – Bill had a supportive housemate living with him, and when his supportive housemate purchased their own home Bill moved with them. Sharing a home with an individual or a family is commonplace, but can be forgotten when considering housing options.

 

Gord’s story – Gord wasn’t interested in a staff model so he found a couple that live on a farm to live with, and they welcomed him in with open arms. This couple and Gord have shared their lives together for the last 19 years.

 

Kayleigh’s story – Kayleigh moved out of her mom’s home and into her own apartment in an 8-plex building as part of Community Living St. Marys’ ‘Supportive Neighbour’ project with The Ontario Developmental Services Housing Taskforce . A young family lives beside Kayleigh and provides some supports. Kayleigh also ended up inviting Yvonne to live with her as a roommate.

 

* Note: The Ontario Developmental Services Housing Taskforce operates at arm’s length from the Ontario government who provided $3MM to fund new innovative housing projects over a 2-year period. In year 1, 12 projects were funded by the Housing Taskforce.

 

Eric’s Story – I live with a roommate in his own home, and he has outside support come to the house. We are roommates who provide each other friendship and I help with things like lunch, letting his dog out, and being there overnight.

 

Check out the podcast to hear some creative ways you can find people to share home with, and to hear the Lesson’s Marg has learned helping people with disabilities to create their home.

 

A key takeaway for me from the conversation with Marg, and the research that I have done on housing is that families need to start thinking and acting on their own vision for housing. What does the ideal home look like? What does the ideal community look like? Take control of your own future. Click Here to download the free housing workbook to get started on your solution.

 

I thank Marg for coming on the podcast and sharing her experience and stories on housing for people with a disability.

 

Love & Respect,

Eric Goll

 

How to Contact Marg McLean:

Email: mmclean@clstmarys.ca

Phone: 519-284-1400 Ext 225

Website: http://communitylivingstmarys.ca/

 

 

Podcast Resources:

Community Living St. Marys Housing Booklet: Click Here

Community Living St. Marys Housing Video: Click Here

#011 - Personal Supports; Recruitment, Connection, and Community, with Sylvia Paurys & Sarah Goll

We have two guests on this episode, Sylvia Paurys, who has been providing personal supports for the last 20 years, and my sister Sarah. Sylvia has been providing Sarah support to build independence for the last 6 months, and Sarah has had tremendous results trying new things and becoming engaged in the community.

 

In this podcast we cover 3 main support topics; recruitment, connection and community. 

 

 

How to contact Sylvia Paurys:

 

Email: sylviapaurys@everus.ca

Location: Ontario, Canada

 

Resources:

 

Respite Services Ontario & Nova Scotia http://www.respiteservices.com/

Indeed Job Postings & Search https://www.indeed.ca/

#009: Helen Ries - Siblings empowering siblings with a disability

A sibling care-giver tells her story of becoming her brother's go to person after her parents passed sooner than anyone expected. This podcast is important for all parents and siblings to listen to.

- Hear Helen’s story as a sibling 'care-giver'

- Learn why it is important for siblings to be a part of family planning

- Learn how siblings can empower their families with conversation and tools

- Learn how Helen is changing Ontario policy, and how you can support.

 

How to contact Helen Ries:

Website: helenries.ca

Website: gifts-assets.ca

Contact Helen: helen.ries@gmail.com

Location: Ottawa, Ontario, Canada

 

 

 

Resources:

Ontario Independent Facilitation Network OIFN.ca

Planned Lifetime Advocacy Network (PLAN) Click Here 

P4P Click Here

A Manifesto for The Family Arm of the Disability Movement" by Helen Ries Click Here

Ontario Leaves Many Persons with Disability Trapped in Poverty by Helen Ries Click Here

 

Facebook Groups for Siblings 

Canada - Click Here

USA - Click Here

 

Love & Respect,

Eric

 

 

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