Empowering Ability Podcast

#092: Group homes: The dangerous truth

I know you want your loved one with a disability to be safe and well cared for in the future...

And... you might be thinking that a group home and/or day program is the answer.

But... I want to share something with you that I heard from a conversation with a government agency director that might just shake your entire belief system.

In a word: It's dangerous.

Curious? Concerned? You should be.

Listen to this short episode, where I uncover the dangers of group homes and day programs for your loved one and give you a better alternative.

With gratitude,

Eric

 

P.S. Transform worry into action: secure an amazing future for your loved one with a developmental disability:

Register for the Life Plan Workshop [FREE]

#078: No one dreams of going to a day program

Are you feeling frustrated with the limited options available for your loved one with a developmental disability?

Do you feel like they're just going through the motions at their day program without really growing or experiencing life to the fullest?

If so, I'm here to tell you that there are better options out there.

 

Why is a day program presented as the only option for adults with developmental disabilities?

The truth is, there are better ordinary options available for your loved one. We're here to help you explore and discover the possibilities that exist to help your loved one live an Awesome Ordinary Life, with more independence, real friendships, and even paid employment.

 

To help you learn more about these options, I've created this podcast to explain why there are better options than a day program and what those options look like.

 

With gratitude,

Eric

 

 

P.S. Want to create an Awesome Ordinary Life with your loved one?!

Click the link below to join our free upcoming workshop:

https://www.empoweringability.org/workshop/

#076: People do NOT want to live in group homes.

You might agree with me, or you might disagree with me. But, you must consider the truth of the living environment and experience of the person when we group people with disabilities and force them to live together.

It's also helpful to hear straight from someone with lived experience, so here's what a person shared with me about their experience living in a group home:

"I have a developmental disability and have lived in an extremely toxic group home. People who are placed in group homes don't have the right to pick and choose whom they get to live with, which can create hostility.

I have been yelled at by both staff and roommates, as well as assaulted by roommates. After leaving that group home, I chose to find my place to live with minimal support.

To this day, I have never looked back. I have the freedom to do what I want and eat what and when I want, and if I ever decide I want a roommate I will have the freedom to choose whom I want to live with me."

In this video, I share why group homes create a poor living environment, and how you can create a better living environment and home for your loved one.

 

P.S. Want to create an Awesome Ordinary Life with your loved one?!

Click the link below to join our free upcoming workshop:

https://www.empoweringability.org/workshop/

#63: We all fall down

Sometimes we fail, we fall down... and we get back up, dust ourselves off, and try again. Falling down is a significant way to learn and find meaning in our lives. So why don't you let your loved one with a developmental disability fall down? FEAR! Your loved one might have vulnerabilities, and you do your best to protect them from harm's way. BUT, the protection you provide might be leading to more harm than the natural consequences that you're saving your loved one from experiencing. In this video, you'll learn the value of allowing your loved one with a disability to fall down and experience the natural consequences.

#061: The Power Of Positive Vision, with Lorna Sullivan

Lorna Sullivan, a global disability leader who is making significant changes inside the New Zealand social system. Lorna is the founder of the International Initiative for Disability Leadership (IIDL) and Director of Mana Whaikaha. I had the pleasure of learning from Lorna when she was part of the faculty in Michael Kendrick's Optimal Individualized Service Design Course. 

 

In this podcast, we cover a wide range of topics, including: 

• doing away with deficit-based assessments, 
• enhancing a person's mana (explanation inside the podcast), 
• the power of holding a positive vision, 
• the rights of people with disabilities,
• tools for social inclusion, 
• and much more!

 

 

About Lorna Sullivan:

Lorna became involved in being an advocate for people with disabilities by accident. She began her study in the field of Psychology, where she was first exposed to people with disabilities who she didn't know existed because they were hidden from the rest of society. 

 

Lorna realized the damage that is done when a group of people, through no fault of their own, are marginalized from the rest of society and have no mechanism to find their way back.

 

Lorna shares, "If we continue to view disabled people as human tragedy and the best we can do for these people is to care for them; we will continue to deny them every aspect of life that we hold to be valuable." 

 

Lorna helps us understand people with disabilities are the same as every other person, the same human needs, aspirations, and desires. She is on a mission to include people in all areas of society.

 

 

Lorna on Inclusion 

 

Paraphrasing from the podcast, Lorna shares:

 

There is a fear of rejection, and in many cases, actual rejection is true.

 

My experience has been society wants to engage with people that have disabilities, but they don't know how to. We need to give them [people] the tools to do that [engage]. 

 

The best tool that we have to create more inclusion in society is to keep people close. If a person with disabilities is with other valued people in the Community, it makes it easier for other valued people to communicate with a person with disabilities. It normalizes the person.

 

 

Tweetable Quotes from Lorna:

 

"Never resort to the special, unless you have exhausted the ordinary. If we start in the special, we will always end in the special."

 

"The only thing that will change the trajectory of the lives of people with disabilities is where you have strong families, with strong vision - you have competent disabled people. Where you don't irrespective of the capacity of that person, you have dependency."

 

"Holding a very strong vision for a positive, meaningful, and full life isn't a trivial thing. If you don't hold this vision through the hard times, you will get blown anyway the wind is blowing."

 

This podcast with Lorna Sullivan is jam-packed with wisdom and is a must listen!

 

Also, if you like ideas discussed in this podcast, you are going to love the upcoming FREE Masterclass Workshop Series that guides families to build a strong vision for a positive, meaningful and full life that Lorna was talking about! Click Here to Sign up for free.

 

 

Love & Respect,

Eric

 

 

 

Resources:

Mana Whaikaha website: https://manawhaikaha.co.nz/

 

The International Initiative for Disability Leadership (IIDL) website: http://www.iimhl.com/iidl-homepage.html

Taking Charge of Life, with Libby Ellis

Separated from her brother at childhood, Libby shares her journey of supporting her brother to create a great life. 

 

Enjoy this conversation with Libby Ellis, sibling, and founder of In Charge, a consulting organization in western Australia that is assisting people with disabilities to be the authors and champions of their own lives.

 

About Libby Ellis:

Libby works for a vivid vision of inclusion. She has walked many steps with her brother, Matthew, and for 20 years she has assisted others in taking front stage in their own lives. She supports people through the experiences, lessons, successes, and failures in self-direction over an extended period. Libby’s vision is to bring a personalized, heart understanding of what it takes to be in charge. Libby lives in Sydney, Australia with her husband, Sebastian.

 

Libby’s Story:

On the podcast, Libby shares her family experience. This blog captures a summary of her story; I recommend that you listen to the podcast to get the full version!

Libby lives in Sydney, Australia and has two brothers. A younger brother James and older brother Mathew (who has a disability). She is married to Sebastian (who is Canadian).

Matthew moved out of the family home when he was just nine years old. He moved into a medium-sized institution, where about 15 other people lived. Later on, the institution got broken up into smaller group homes. When her parents asked for help, that was the solution. For many families, this is still the proposed solution.

Libby started to realize these injustices that Mathew was faced with when she was in her mid to late teens. Matthew’s experience was a trigger for her rights based / social justice thinking. Libby was transformed through love and witnessing Matthews experiences in a disabled world. She saw his pain, vulnerability, powerlessness, and lack of control.

Libby’s family helped Matthew move out of the group home when he was 26. Her childhood experience was one of separation from her brother and trying to understand why it had to be that way.

 

How did the separation from your brother impact you?

Libby: “I started to ask why? It has led me on my path, and in my career to date. It has taken me to a lot of lessons and experiences that I have experienced over the last 25 years of my career.”

 

Can you share Matthew’s experience of separation?

Paraphrasing from the podcast, Libby shares: 
“Matthew doesn’t speak and hasn’t yet been able to share his experience. He can understand, but he is missing expressive language to share his thoughts and his feelings.

From my perspective, he experienced some not very nice things. He has some behaviors that developed as coping mechanisms. When I look at pictures of him from that time vs. images of him now, there is such a difference, and it isn’t a difference of age. I can see the impact of the disabling environment that he was in.”

 

How did you make the move out of the group home?

Paraphrasing from the podcast, Libby shares: 
“Because he couldn’t articulate his experience himself, we had to come up with a decision-making process and take a leap of faith to help him move out of the group home. Meeting with other peers and people that have gone before you, then you can see the thing that you want because someone else has created it and is living it. You can then see the pathway forward – this is so important.

You can see the evidence, or indicators, to a good life, that is there in other people’s lives, but they aren’t there in your family; this can help to take that leap of faith.”

 

How did you breaking through communication and behavioral barriers?

Paraphrasing from the podcast, Libby shares:

This is an ongoing challenge. We had the questions: Who is going to want to live with Matthew? Who is going to want to care for him?

It is what I call the “what ifs..” It is helpful to list out the ‘What If’s…”

What if… Someone does something to him..
What if… He loses the key…
What if… xyz…

This then becomes the basis for the safeguarding system we built.

We need to step into the unknown, but before that, there is a lot of planning and preparing.

By trusting and having a sound safeguarding system in place, we have found people, and people are out there. Sometimes it takes a while to find the right person.”

Eric shares, “ It is a myth that people that have a disability have to live with other people that have disabilities.”

Libby shares, “It is hard work. The social model of disability teaches us that it is going to be hard work. But, it was also hard work when Matthew was in institutional settings. In institutional settings, it was hard work to make a change because of the powerlessness [against the organization]. Now it [the social model] is hard work, just a different kind of hard work. For example, finding someone to live with Matthew. But now we have control and power.”

 

What are some of the other key lessons you learned?

Paraphrasing from the podcast, Libby shares: 
“We are not automatically an advocate. Families are blocked by low expectations, not having a sense of what is possible, past negative experiences. We are often making choices within very narrow perspectives.

Also, there is a difference in advocating for ourselves and others. Families need to be careful about what we ask for and what we create. The history of what has been created by families includes many of the services that have been started, and there is a pattern of segregation as a result.”

Eric: As families, it is our responsibility to educate ourselves. Take workshops, connect with thought leaders, listen to podcasts, and connect with families leading the inclusion movement. One step you can take is to take the FREE Empowering Ability Mini-Course. To learn more click here.

Libby and I also discuss the topics of life being more than a service, the impact of agency, family constellations (psychotherapist, Bert Hellinger), and tipple win thinking. You can hear all of these insights by clicking play on the podcast player below!

 

I express my sincere gratitude to Libby for coming on the podcast and sharing her story and wisdom!

 

Love & Respect,

Eric

 

Resources:

Libby’s Website: Incharge.net.au
Email: Hello@Incharge.net.au
Connect with Libby on linkedIn https://www.linkedin.com/in/chargeaustralia/

#056: How To Create The Good Life, with Genia Stephen

Here is the secret.... it is to start with developing valued roles. What is a valued role? A valued roles is the answer you give to the question 'What do you do?' when you meet someone new. [more on valued roles below] Guest Genia Sthphen also shares her story as a sibling, a mother to two sons, and how she has helped to create the good life for her son Will.

 

Professionally, Genia is a midwife to many, and an activist with a mission to band together with families to joyfully pursue the good things in life. She recently launched the Good Things in Life, which is an online community for young families who share a vision of the good life for their kids with disabilities. 

 

 

You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.

 

Growing Up With a Sibling that has a Developmental Disability (DD)

 

Genia is the 3rd of 4 daughters, and her younger sister Kate has a DD. Genia’s two older sisters are a fair amount older, and it was really just the two of them (Kate & Genia) when they were growing up.

 

Genia remembers going to appointments with Kate where they had Kate do silly things, like hold onto the pencil, and they would pull on it until she let it go. Kate didn’t care much for holding onto the pencil and as a result, was diagnosed with having poor muscle tone. But, Genia and Kate thought it was funny because Kate would drag Genia around the house on her back by her toes. 

 

Genia recalls, “At 5 mom sat me down on her lap and told me that Kate had a disability. Mom was serious, it was an occasion, She explained Kate would learn more slowly than other kids. I responded by crying. I was trying to figure out what was expected in this situation, and it was clear to her that the appropriate response was to be sad.”

 

It was a big deal for Genia’s mom. She had never experienced someone with a disability, Her mom was terrified, intimidated, and overwhelmed. It was something worth crying about for her.

 

Genia’s mom reached out and started to connect with other parents and other people that knew more than she did. She surrounded herself with this community and exploded into a powerful advocate. She stopped delivering the information in a way that elicited sadness and started having really high expectations. She had connected with some people that had worked with Dr. Wolf Wolfensberger, who developed the social theory of Social Role Valorization (SRV).

 

Genia attended her first SRV workshop at 15. It taught her language, and how the world works for people that are devalued.

 

Key Insight: Connecting with other families is important. Not just getting connected, but who you get connected with. What are their beliefs and mindsets? How you deal with grief and fear is guided by your mindsets and fear for a person with a disability.

 

 

When Genia’s second son Will was born he was very very sick. Genia recalls, "we weren’t sure he was going to make it. They were telling the family that he would have significant disabilities." Genia’s response was “Well yeah yeah yeah, but is he going to make it, let's focus on what matters here. And he did [make it!].”

 

 

What is Social Role Valorization (SRV)?

 

GS: “SRV is the universal ways that people are devalued in society. Devalued people are not able to access the good things in life the way that valued people are. For example, devalued people do not have the same opportunities for personal growth, education, meaningful work, freely given relationships, pursuing their interests. People access the good things in life through the roles we play in society. It is also how we connect and understand each other. One of the first questions we ask someone is “what do you do?”. It helps us understand and relate to each other through roles.”

 

 

There is No Risk-Free Path

 

GS: “If your major fear is that someone is going to be hurt or rejected, and the way that you prevent that is by keeping people protected and isolated from the people that might hurt them, then that leads you down a vision that likely includes a lot of services and people paid to keep the person safe.

 

Alternatively, if your mindsets and beliefs are that safety for vulnerable people comes through relationships, this leads you down a path of life in the community.

 

There is no risk-free path.”

 

 

What Does The Good Life Look Like for Will?

 

Listen to the podcast to hear how Genia’s family has thought about the role of student for Will. Genia and her family thought through the things that were likely to increase people’s high expectation and positive image of Will in the role of student, starting from the age of 2!

 

GS: “Will is now 12, and we think about for his peer group what are the typical valued social roles that a person holds? And, what are the kinds of opportunities that those roles bring? Then we pursue those things.”

 

Want proof!?! Watch the video below.

 

 

Video: Will Enjoying The Good Things In Life

 

Key Insight: Look to what is typical for people that don’t have a disability at that stage of life and focus on the roles the individual could hold to create your vision. Additionally, the person supporting needs to understand the social role and also have the social currency to help them get there.

 

 

In this podcast, Genia and I also cover topics including raising the consciousness of devaluation in our society, the experience of being a mother with a child that has a disability, and what the experience of having a sibling with a disability. 

 

Tweet-able Moments from the conversation with Genia Stephen:

 

"Devalued people are not able to access the good things in life the way that valued people are. For example, devalued people do not have the same opportunities for personal growth, education, meaningful work, freely given relationships, pursuing their interests."

 

"...if your mindsets and beliefs are that safety for vulnerable people comes through relationships, this leads you down a path of life in the community."

 

"Look to what is typical for people that don’t have a disability at that stage of life and focus on the roles the individual could hold to create your vision."

 

 

 

 

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.

 

The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!

 

 

Love & Respect,

Eric Goll

 

 

 

 

Resources:

 

Will Social Media: Theadventuresofwill.ca  

 

The Good Things in Life --> For Parents of young children with IDDs. Goodthingsinlife.org.

 

Contact Genia by email: Genia@goodthingsinlife.org

 

Creating Valued Roles with Janet Klees: Click Here

 

 

 

 

 

Too Busy to listen to the podcast now? Listen on the GO!

 

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

 

#054: Ben Drew's Mission to Fight Oppression and Create Ordinary Lives for People with Intellectual or Developmental Disabilities

Learn about the Open Future Learning training resource for supporters of people that have an IDD, & how Ben Drew is fighting the oppression of people with IDDs.

 

In this podcast/ blog I had a pleasure of speaking with Ben Drew, Founder of Open Future Learning. Ben has over 20 years of experience working with people with an intellectual or developmental disability starting as learning disability nurse, then going on to create an individualized housing and support service, and he is now the Founder of Open Future Learning. Ben is also an incredible storyteller and even though this podcast is lengthy, it is a pleasure to listen to.

 

Due to the length of the podcast, the blog is broken down into Part 1, and Part 2. In Part 1 of the blog, you will learn about the Open Future Learning training resource for supporters of people with intellectual or developmental disabilities (IDDs), and Ben's life journey to fight oppression and create ordinary incredible lives for people with intellectual or developmental disabilities. In Part 2 of the blog, you will learn about 3 foundational support principals for exceptional support. As always, all of these insights can be heard by clicking play on the podcast player below.

 

 

You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.

 

What is Open Future Learning?

 

Open Future Learning is an Online learning resource 100% dedicated to the field of intellectual or developmental disabilities (IDDs). The platform is developed for support staff, but anyone that touches the lives of people with IDD can benefit from the resource. The platform has a wide range of learning modules (for example: abuse prevention to social valued roles) which are delivered as interactive multimedia books. Open Future Learning is known for their short films and they have an on-demand video library with just over 700 short films featuring the leading global thinkers on IDD. They have also created a new product called Side-By-Side learning. 

 

Ben explains, “ We have the saying from self-advocates, ‘Nothing about us, without us’, but we don’t live up to this. Training is one of those things. So we developed ‘side-by’side’ learning. The person that receives the support and provides the support do the learning together. They are short 30-minute interactive learning modules."

 

Ben continues, "Much of the content is created in collaboration with many of the leading minds in the developmental disability community. It is a really financially efficient way to get people to access these leading minds, compared to only the select few that were able to go to a conference."

 

The platform is designed for support organizations and priced accordingly, however, if you are an individual learner or a family and you want access to this resource you can email Ben and he will help you to access this resource. Email hello@openfuturelearning.org

 

 

 

Ben Drew’s Mission To Fight Oppression and Create Ordinary Lives for People with IDDs:

 

Paraphrasing from the podcast, Ben shares his story:

 

“I grew up in the UK in a small town called Devon. On the outskirts of the town, there was a small community for people with IDDs. It was kind of like Camphill without the farm. My best friend from school lived in that community, his parents managed the community. He lived in this cluster of houses where people with IDDs lived. It was great because we played football (soccer) on demand, it was mostly guys, and I got to know all of these people in the best way. When these guys came into the town the way that other people interacted with them was different. They teased them, they spoke behind their backs about them. This always sat with me and it was the starting point to wanting to work with people with disabilities. Went I was 18 years old I went to a summer camp for people with IDDs in the US, and really enjoyed it. Then came back to the UK and got a job with a guy named Gary Kent. He lived in a large residential home with 20 people with IDDs. It was a hospital that had been converted for people with IDDs to live after the institutions closed. Gary lived there as well but decided he wanted his own home. He left and purchased his own home in a nearby village. When Gary came back to the residential home he said he had to close down the residential home. He had seen the other side of life. He was learning how to cook, he was in his own community, he had control over his life and his environment - and he wanted everyone else to have that.

 

There was a guy that lived there [in the residential home] that was physically abusive, and there was a guy that was a runner. When the runner chose where he wanted to live, he never ran away again. The guy who was a hitter moved into a home of his own and he stopped hitting people. You can be getting really good support and if the environment isn’t right and the location isn’t right - you can only so so much.”

 

Insight: This was a huge lesson for Ben when he saw the change in people when they got control of their lives. These oppressive environments occur in residential homes, but they can also happen within our family homes. Speaking from personal experience, my parents home became an oppressive environment for my sister Sarah (who has an IDD) due to a lack of choice, social isolation, and lack of transportation. Most of Sarah’s decisions were made for her and most things were done for her. Of course, these things were done with the best of intentions, but this caused more stress and anxiety on everyone in the household, everyone entering the household, and suppressed opportunities for Sarah to grow. Sarah has moved out of her parents home and into a home shared with me where she now has choice and control of her life.

 

Ben continues with a leadership insight:

 

“Vulnerability of leaders is important. Gary was always incredibly transparent. He would always share his mistakes and things he had messed up. The residential home was just another thing. In order to empower everyone else underneath him, he had to be that way. The people underneath him could also make mistakes, they could also mess-up. I see cultures in organizations coming down on people. If you make a mistake it is a warning, if you make 3 mistakes you aren’t allowed to do things anymore. That culture just doesn’t work.”

 

Ben then when on to set up service to help 100 people with IDDs over 6 years to buy or rent their own home, manage their own supports with their own budgets, in Bristol UK, using the formula Gary gave him. Ben then moved to New York, and that is where he started Open Future Learning.

 

Part 2 of this blog is coming on December 18th, with insights on 3 fundamental support principals that are foundational to great support. If you want to learn about these core support principals now, you can do so by listening to the podcast.

 

Ben is also the creator of memes that help to nudge people in the direction of being more accepting, more inclusive, and to develop the understanding of what it is like to live with an intellectual or developmental disability. Here are a couple of my favourites:

 

 

 

 

 

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.

 

You can also support this work by subscribing. This podcast and blog is supported completely by listeners and readers like you. Thank you to those that have supported by subscribing!

 

 

Love & Respect,

Eric Goll

 

 

 

 

Resources:

 

http://www.openfuturelearning.org/

 

https://www.youtube.com/user/OpenFutureLearning

 

Email: ben@openfuturelearning.org

 

 

 

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

 

 

 

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

 

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#053: Personal Support Networks, with Rebecca Pauls

In this episode, you will learn all about Personal Support Networks! You might have heard of support circles, circles, microboards, or aroha's (there are probably names I'm missing), but theses are all forms of Personal Support Networks. Rebecca Pauls, Director of Planned Lifetime Advocacy Network (PLAN), shares with us with us what a Personal Support Network is, how they can benefit you, and how to go about building one.

 

Rebecca is the Director of Planned Lifetime Advocacy Network (PLAN), a Vancouver-based social enterprise that partners with families and people facing social isolation to secure their future by mobilizing relationships and leveraging community assets. Since joining PLAN three years ago, Rebecca has led a complete re-design of programming to integrate principles of person-centred planning, ABCD, narrative therapy, and independent facilitation. After demonstrating the strength and flexibility of this community approach, Rebecca is regularly invited to consult with organizations about how it can be scaled and applied to population groups across North America.

 

You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.

 

How did PLAN Originate?

 

Rebecca shares:

 

“PLAN is an advocacy group in BC, which started with a group of parents that came together and founded PLAN 30 years ago. These parents believed their sons and daughters could contribute and be included in the community. The work of PLAN is charting a new path that is full of opportunity for people with disabilities. They are thinking about the present, but also the future. What happens when we are gone? This is when the idea of personal support networks really began to mobilize.”

 

One of PLAN’s ultimate aims is to create a Good life for families, which includes; Friends and relationships, making a contribution, being empowered to make choices, a place to call home, financial stability, parents have peace of mind. The basis of all of these things is to have people and relationships to do life together with. One of the main tools used at PLAN to accomplish this is personal support networks.

 

 

What is a Personal Support Network?

 

We all have a network – a group of people we depend on for companionship, support and decision making. This typically includes our family, friends, and neighbors, but also professionals like counselors or financial advisors. This group can be considered your “Personal Support Network”, and it reflects your personal interests, abilities, and needs. The specific individuals will vary by person and may change over time. Some networks will include many, while others just a few people. (Reference: PLAN website)  

 

What is the Purpose of a Personal Support Network?

 

Paraphrasing from the podcast Rebecca Shares:

 

To ensure that no one is alone or so no one is stuck in isolation. Sometimes we hear the saying that loneliness is the only debilitating disability. A personal support network is to ensure that everyone can live in an inclusive community. There are all sorts of things people in the network can do together and accomplish. At the heart of it is recognizing that we have the support that we need to live the life that we want and dream of for ourselves.

 

 

What are you seeing for people with Disabilities that have an intentional personal support network, vs those who do not?
 

Paraphrasing from the podcast Rebecca Shares:

 

“I think the difference comes in when the unpaid relational support is involved. When there isn’t a personal support network they might live a life where they don’t have friends. When a personal support network is involved and parents aren’t able to be involved, there are people that are there to play important and specific roles. At PLAN we have mentors to support families with building and maintaining these Personal Support Networks.

 

In different times in a person’s life, they might depend on a person’s personal support network in different ways. When they are a young person or things are going well they might do more fun and social things. At different points in life when challenging situations come up, or there is a need for planning and advocacy it might be more formal. You can often hear these networks being called natural supports, or circle of support, or microboard (which is the most formal way of setting up a personal support network). The most important thing is not what you call it, but in the way that people are working together. It is important not only for people with disabilities, but it is more like a way of being, and a way of living our lives. It is sometimes difficult to build or maintain those personal networks. PLAN has a community connector or mentors to help keep everyone connected.

 

How does someone build a personal support network?

 

Paraphrasing from the podcast Rebecca Shares:

 

“We start by getting to know who the person is, their gifts, what they think about, what they like to do, and the things that they care about. We build relationships based on common interests. When we build the network we focus on gifts and the uniqueness of each person. Then we think of who are all of the people in your life and build a relationship map. If there aren’t a lot of people in your life we think about if you did have people in your life, what roles would they play?

 

Then we look to the community. We believe that our communities are full of welcoming places and other people with gifts. When we look to build the connections we look for groups that are already in place. The role of the community connector is to create opportunities for the person to get connected.

 

Turning those relationships into a network is a matter of talking about what is important. We encourage people to share what is important in their life right now. The community connector can help to create the opportunities for people together.

 

As we reach a time where a generational shift is happening, the parents that created inclusion across the country are reaching their 70’s the rubber is hitting the road in terms of these networks and transition.

 

Building networks is a little bit counter-cultural, we are getting busier, and we are living more isolated lives, we don’t know our neighbors as much as we used to. ”

 

You can access the resources on building personal support networks (e-books and online courses) mentioned on the podcast in the resource section at the bottom of this blog).

 

 

 

Who plays the community connector role?

 

Paraphrasing from the podcast Rebecca Shares:

 

“Sometimes there is a natural connector in a person’s life. In other situations, the family might hire someone to play that role (Like the service PLAN offers). Some organizations train their personal support workers to take a network approach. The supporter will ask the question, who else can we involve?

 

Personal support networks usually come together every month or every other month to do some planning and to talk about what the priorities are for that month, and how they can support each other.”

 

 

What do personal support network meetings look like?

 

Paraphrasing from the podcast Rebecca Shares:

 

“Some are very structured and some are very natural. We plan based on what that person is comfortable with, what the current needs and priorities are. At PLAN every 6 months we create work plans. For the next 6 months, what do we want to accomplish? Do we plan events and celebrations, look for job opportunities, or find a new apartment. Each month the community connector will send a monthly update on the progress that is made.”

 

On the podcast, Rebecca gives examples of what support networks and roles people play in a support network can look like.

 

What are you currently learning at PLAN?

 

Paraphrasing from the podcast Rebecca Shares:

 

“PLAN has done a good job helping families build networks which have resulted in friendships and community contribution, but we are starting to really work toward helping people put those networks to work. Passing the baton from mom and dad to other people in the network, before we reach a crisis point and being proactive. Identifying the key roles, and what is the succession plan. Inviting network members and transferring the knowledge to the next generation. It is succession planning, what do we need to know and how do we start to pass this along. Roles like trustee, guardian or power of attorney, or more practical things like who is going to help this person go to the bank or transportation.”

 

PLAN has also developed a new planning tool that works to answer the question, do families have peace of mind? This is an interesting question because peace of mind is dynamic and it changes. This new planning tool helps families to understand if they have peace of mind in the different areas of life, and it helps families to think about what they need to do to get there. Listen to the podcast to learn more about this thinking that Rebecca shares.

 

A final message from Rebecca, “Personal support networks are about relationships. They are about living intentionally together and supporting each other and sharing what is important to us. For me personally, because of all of the changes we see happening in families and people sadly passing away, there is a real urgency for us to begin asking the question, ‘What does this {personal support networks] really look like?’, and, ‘Are we intentionally supporting each other?’. Do we know people that don’t have any relationships?, and asking ourselves, 'what we can do?'. There are all kinds of possibilities to connect and we just need to go after them."

 

 

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.

 

You can also support this work by subscribing. This podcast and blog is supported completely by listeners and readers like you. Thank you to those that have supported by subscribing!

 

 

Love & Respect,

Eric Goll

 

 

 

 

Resources:

 

Safe and secure, by Al Etmanski 

 

Online 6-week course called Personal Support Network Facilitation

 

Planinstitute.ca has several online resources in their learning center

 

 

 

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

#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

#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

 

#043: Building Relationship and Inclusion, with Nick Maisey

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

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

 

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

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

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

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

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

 

 

How is Befriend doing this?

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

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

 

 

Reducing Loneliness and Isolation in Community:

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

 

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

 

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

 

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

 

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

 

The Space In-between:

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

  

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

 

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

 

 

Love & Respect,

Eric Goll

 

 

 

 

Resources:

Nick's Blog: Click Here 

Befriend website: Click Here

Befriend Facebook page: Click Here

 

 

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

 

 

 

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

 

Click Here To Listen on iTunes

#041: A 4-Stage Framework to Build Relationships, for People with Disabilities, with Al Condeluci and Keenan Wellar

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

 

The approach that Al Condeluci shares is a 180-degree approach from looking at a person’s deficits. “Oh, Sarah can’t do that…. She would never be able to (fill in the blank).” This approach zooms out and looks at the much bigger view (macro view as Al calls it) of a person’s life.

 

 

In an ongoing study, by Harvard University, it was revealed that relationships are the biggest contributor to our happiness:

 

“Close relationships, more than money or fame, are what keep people happy throughout their lives, the study revealed. Those ties protect people from life’s discontents, help to delay mental and physical decline, and are better predictors of long and happy lives than social class, IQ, or even genes. That finding proved true across the board among both the Harvard men and the inner-city participants.” Link to article.

 

 

In conversation with Al Condeluci, he explained to me that the average person maintains approximately 150 social connections [The Rule of 150] , however the research is starting to  show that people with disabilities only maintain on average 25 connections. More to come on this in future episodes!

 

 

So how do we improve a person’s social capital?

 

 

 

4-Stage Framework for Building Social Capital:

 

On the podcast, Al Condeluci shares:

 

1) Understand the person’s affinities and passions. This requires a cultural shift from deficits (what a person cannot do) to a profile of assets.

 

2) Where do these affinities and passions happen in the community? For every interest, there is a group of people in the community that enjoy those interests. Find where these interests exist in the community. This is where people will gather around an interest, and creates similarity, rather than difference. This forms a connection point.

 

3) Learn what is expected of people when they look to join the group or community. Once you have an understanding of the expectations of a person in these settings you can then coach and prepare the person you are supporting to understand what those expected behaviours.

 

4) Find the gate keeper. This is someone that is already a part of the community that can help to facilitate relationships with others.

 

(More detail on this framework is provided in the podcast, and in Al’s book 'Social Capital: The Key to Macro Change')

 

 

 

Building Social Capital in Action:

 

Keenan Wellar, Co-Leader of LiveWorkPlay, leads the organization to implement Al’s 4-stage framework for their clients. Keenan shares that taking this approach is a lot of hard work, and takes some figuring out. They don’t always get it right the first time.

 

Keenan shares the story of Chris, a young man with an intellectual disability, who is a soccer player and his current team wasn’t working out. The LiveWorkPlay team worked with Chris to find him a new team that would be inclusive and accepting of what Chris brought to the team. They met with Chris’s new team to educate them on being inclusive, however, the team said this is who we are – we are accepting of everyone.

 

Chris went to his soccer game, and it was overlooked that he didn’t have a ride home. The next morning the LiveWorkPlay team was in a panic to learn that Chris was invited to go out for beers with the team after the game, and someone drove Chris home. Chris didn’t get invited out for beers and driven home because he had a disability, it was because he is a part of the team.

A huge thank you goes out to Al & Keenan for the work that they do to improve social capital for people with disabilities!

 

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

 

 

Love & Respect,

Eric Goll

 

 

 

 

Resources:

 

How to contact Al Condeluci:

 

Website: http://www.alcondeluci.com/

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

Location: Pittsburg PA, USA

 

 

How to contact Keenan & the LiveWorkPlay team:

 

Website: http://liveworkplay.ca/

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

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

Phone: 613-702-0332

Location: Ottawa, Ontario, Canada

 

 

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

#035: Thinking Differently About Disability, with David Hasbury

This week’s guest on the podcast/ blog is David Hasbury. David shares the history of disability, and disability services to help us understand how we got to where were are today. David also shares how we can think differently about disability to create a world where people with disabilities are included as citizens.

For more than 30 years, David has been committed to empowering people with disabilities to creatively shape the world around them. Since 2008, Dave has collaborated with Patti Scott, his wife and Neighbours C.E.O., in supporting people with disabilities, families, communities, organizations, and governments in making it possible for people with disabilities to live as contributing citizens and community members, where all can make a difference. David has been involved with person-centered planning since the 1980, and does his work all across the world.

This blog is a summary of my conversation with David, and includes many of the insights that he shares on the podcast.

 

Why Are Disability Services The Way They Are?

To answer this question David shares the history of developmental disability and the 3 big waves he sees.

 

Wave 1: In the 1800’s there was no definition of developmental disability. People were labeled as strange, crazy, or imbeciles and often thrown into jail. There was a lot of shame with disability, and people lived with families and stayed on farms.

 

Wave 2: Eventually, governments discovered people with developmental disabilities didn’t belong in jail, and a more hospital like setting became the norm - institutions. It was a progression from jail, and it was 'protecting' people in the community from these rather ‘odd’ folks. This lasted, for 80 years, until the 1950’s and 1960’s when the (poor) treatment of people in institutions became exposed, and it was realized that people were being warehoused, and this wasn’t right either.

 

Wave 3: Families that kept their sons and daughters at home got together and started to find support for their children and they focused on education in classrooms, giving birth to ‘special needs’ classes. We progressed from seeing people as strange and crazy to the ‘r-word’, and we categorized people as trainable, educable, or severely or profoundly disabled.  We formed groups/ places for people to go based on these categories. The government the applied these categories to residential life as well.

 

We were looking for places for people to go where they would have ‘appropriate coverage’ and safe places in community. Creating places became the thing we did and the government started buying the services of organizations (many founded by groups of parents). The government bought places in community where people with developmental disabilities would be covered (kept safe).

The Next Wave: In the last 30 years, the idea of people being individuals and citizens evolved, and person-centered planning emerged. We started to imagine people with developmental disabilities as citizens, and think about how can they be included in community.

People with developmental disabilities want a real education, a real job, a real life - not special.

In the 2000’s the government in Ontario started to fund this type of support (Passport) to help provide these opportunities for people with disabilities.

Creating places and having coverage is still the dominant model. Even with person-centered funding, people are still buying places and coverage with these support dollars. We need to think differently about that. The model of placement and coverage was not designed with the idea of citizenship, control and inclusion, and community involvement in mind.  It’s really difficult to make that happen (person-centered planning) in people’s lives when you are using an old system that was designed for a different purpose. And so, we need to do things in new ways, and we need to think differently.

Placement and coverage is still dominant. In Ontario, more than 3/4 of the government budget is spent on placement and coverage, and is serving less than 1/3 of the population. So, 2/3 of the population is getting very little support.

 

Shifting To A More Person-Centered Approach.

We need to think not so much about buying spaces, but we need to think about investing the little bit of resources we have available to grow our presence in the area the individual is truly interested in.

Historically, we haven’t imagined growth for people historically for people with developmental disabilities. For example, we might think this person has the mind of a 5-year-old, and we imagined that life stopped at some point for that person.

We might be stuck in a placement and coverage system, but how can we start to take some of these resources or negotiate these resources to use them in an individualized way

Start with what can you do. Probably the most disabling thing is actually thinking disabled, which is can’t focused

  

How Do We Make The Person-Centered Shift?

 

Individuals & Families:

Imagine the life that this person wants to have! What does Jane want to do with her time? Where does she want to be? Who does she want to be with? It is important for families to think about the person that they love in relation to other people in a community and being valued for who they are. We need to start to think about people differently.

Up until someone is adult we focus on that person’s problems; in education, in health care, in support, and we need to think differently when it comes to community life. In community life, we need to think about what that person brings (their gifts, and contributions).

There isn’t a group of citizens out there, we each (individually) need to be able to decide where we are going to go, and were we are going to put our time, energy and resources. Families need to think, what can we do to make this possible for those that they love.

If Jane loves music and Jane can start going to karaoke night once per week for 2 hours every week, for only 2 hours, people will start to recognize that Jane loves singing and she can start to build relationships. Then, there is then a possibility for this to become more (an investment).

If we invest in things that we love, those things grow. But, we have focused on placement and coverage because we have thought that people don’t have something to offer. That is the shift, people do have something to offer and we have to give them the opportunity to grow that.

 

Government and Service Organizations:

We need to think about people as individuals.

We need to think about the resources for individuals individually. Resources need to be individualized, money needs to be individualized, and people need control over that money. The people hired to support people with intellectual (developmental) disabilities needs to be individualized. There is no generic intellectual (developmental) disability.

 

If you are embedded in a placement and coverage model, you can’t get to citizenship from there. The principals and structure (of safety and somewhere to go) won’t let you get there (to citizenship). For example, when there is grouped support of 3 people (with a developmental disability) in a house with 1 staff person and Bob wants to go out, either everyone has to go, or Bob can’t go. (A question to consider: Is this ordinary?)

From a government perspective, 20-25 % of the population of people with a developmental disability is getting 80-85% of the resources, this isn’t sustainable.

 

Dave’s partner, Patti Scott created an organization serving people that have a developmental disability called Neighbours in New Jersey, USA.  Neighbours empowers their customers by giving them choice and control of their life including; their staff, what they do with their time, and where they live. Patti Scott is joining me on an upcoming podcast, so be sure to tune in to learn more about Neighbours.

 

A big thank you to Dave Hasbury for joining us on the podcast and sharing his insights to help us think differently about disability! 

 

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-international.com

Follow Neighbours International on Facebook:  https://www.facebook.com/NeighboursInternational/

 

 

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

#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

#029: Bill Hiltz's Story: Freed From the Cage of Incapability

Bill Hiltz shares his story of how he was mistreated and caged in an institution as a toddler, freed by loving people, and how he has grown into a leader advocating for positive change for people with disabilities.

 

In this podcast episode, I had the pleasure of interviewing ‘Team Bill’, including; Bill Hiltz, and his supporters Joyce Balaz and Arn Row. Bill is a disability advocate that is promoting positive change in the Ontario political arena by sharing what it is like to live in his shoes. Bill is non-verbal, and he is impacted by an uncontrolled seizure disorder that can rule his life. 

 

 

 

Bill Hiltz’s Story

 

Paraphrasing from the Podcast Joyce and Arn share:

 

Joyce: “When Bill was born there were complications with the birth that led to Bill’s seizures. At the time, his family didn’t have the resources and supports to provide for Bill, and Bill went into foster care system at 1.5 years old. Bill went into a number of foster families, in and out of the hospital, and then ended up at Christopher Robin, which was an institution in Ajax, Ontario. The institution was closing when Bill was 8 years old, and a family who had already adopted another child came back to the institution and adopted Bill.

 

Arn: “It is important to share Bills experience in that institution. Bill’s time was mostly spent in a crib cage, which had 4 sides and a top on it. Bill wore a helmet because he was banging his head on the bars, which was Bill’s way of trying to tell whoever would listen that he didn’t want to be in there.”

 

Joyce: “When he was taken in by the family after the institution they just loved him to death, and he lived with them for 12 years (until he was 19). The father providing most of the care fell ill, as well the 3 (other) boys of the family where moving out of the home – so it was a time for transition (for Bill).”

 

Joyce, who was Bills educational assistant (EA) at school since the age of 13, heard that Bill was looking for a new home. Bill and Joyce gave living together a couple of trial runs and it went well. Bill then moved in with Joyce. Since then they have blazed a trail with their advocacy work, and growing and learning together.

 

 

(Left to right: Arn Row, Bill Hiltz, Joyce Balaz)

 

 

Start with the Assumption of Capability

When you see Bill you wouldn’t expect him to have done the things that he has done in his life. When Bill was in the institution as a toddler he was caged because he was misunderstood. Assumptions where made about his capability, or should I say incapability. Bill was shown love and respect by the family that adopted him, and since by Joyce, Arn, and many others. Bill’s story highlights the dangers of starting with the assumption that a person isn’t capable.

By assuming a person is NOT capable we keep them caged and deny the opportunity to live their best life. When we start with the assumption that a person IS capable, we give that person the opportunity to grow and live their best possible life.

What is the worst thing that can happen if we start with the assumption that someone is capable? They fail, and hopefully learn so they can be more successful in their next attempt. (Yes, it is important that we consider holding people capable in an environment that is safe for them so that if they do fail they have the opportunity to get back up and try again.)

Always start by holding people capable, disability or not!

Bill taught me this invaluable lesson. When I first met Bill I assumed that Bill wasn’t capable of having a conversation with me – and boy did he prove me wrong! Thank you, Bill.

We discuss holding people capable in more depth on the podcast.

 

 

Our Fear of ‘Different’

It took me well over 5 days of being around Bill before I actually engaged in a conversation with him. What took me so long to talk with Bill?

 

It was my own fear.

 

I judged Bill because I had perceived Bill as being different than me. This self-acknowledgement hit me square between the eyes. My sister has a disability, and I have several friends that have disabilities, and this fear was still present inside of me. What does this fear look like for others that have not had contact with people with visible disabilities like I have?

 

Joyce had a similar experience when first meeting Bill as an educational assistant (EA). Joyce shares, “…. I told the teacher that I didn’t want to work with Bill because I didn’t know how to work with him. The first time that I told Bill this he was mad, and didn’t talk to me for two weeks. Now that he has heard this story a number of times it has given him an opportunity to think about how other people view him.”

 

How is your fear holding you back from interacting with a person that you perceive as different? It could be a person with a disability, a person from a different ethnic background, or a different religion.

 

  

How Do We Best Communicate with Bill (and others that have a developmental disability):

In this episode, we discuss how it can be difficult to enter into a conversation with a person when there isn’t a response or acknowledgement back from the other person.  This doesn’t mean that that person isn’t interested in engaging with you. Here are 3 tips we provide on the podcast to communicate with people that have a developmental disability:

1)  Be patient

2) Be sincere

3) Ask how to best communicate with the person

 

Bill has shared, we need to learn how to slow down. A fast pace verbal world isn’t the world that Bill lives in. Bill gives others the gift by providing them to slow down and operate at his frequency.

 

  

Bill Hiltz’s Advocacy Work

Bill’s seizures have such a severe impact on his energy that he has forgone his recreational activities, such as horseback riding, and uses his energy to solely focus on his advocacy work.

 

Bill envisions a world where we are seen as we who we are, not for what is different. Bill shares, “People have been excluded for so long, which means people see the difference first. When people we are truly included others get to experience who we really are.”

 

Bill has started the “Walk a Mile in My Shoe” project (seen in the blog cover photo) where he invites people to acquire a disability, (for example loss of sight, hearing, or physical ability), and walk beside him to experience what it is like to live with a disability for a short amount of time. Bill’s theory is that the experience will lead to understanding, which will lead to change.

 

You can support Bill by visiting his website, or participating in/ sponsoring one of his events. The proceeds go to the organization Reach for the Rainbow, which provided Bill with camp experiences as he grew up.

  

 

Bill shares his wisdom with us in his powerful poem, titled 'Understanding People'

 

UNDERSTANDING PEOPLE 

 

A SET OF STANDARDS BY WHICH TO JUDGE 

TO THEIR FRIENDS, THEY GIVE A NUDGE 

WHEN THEY SEE ME COME THEIR WAY, 

THEY STOP AND WALK THE OTHER WAY 

OR EVEN WORSE, THEY STOP AND STARE 

AS IF I'M STUPID AND UNAWARE. 

IF ONLY THEY COULD KNOW, THAT I CARE; 

HOW PEOPLE VIEW ME--IT'S JUST NOT FAIR! 

I FEEL THE VERY SAME AS OTHERS DO, 

THEY SHOULD TRY AND WALK IN MY SHOE. 

LIFE'S NOT EASY, WHEN THE BODY THAT YOU OWN 

WAS GIVEN TO YOU BROKEN-DOWN. 

THEY MAY BE MEAN; THEY MAY BE CRUEL; THEY MAY BE BAD; 

BUT MOST OF ALL...THEY JUST DON'T UNDERSTAND. 

WITH SOME TIME AND SPECIAL GUIDANCE; 

WE CAN HAVE A GREAT ALLIANCE. 

FOR AN HOUR, OR FOR A DAY; 

WE ALL NEED FRIENDS ALONG THE WAY. 

SO WHEN YOU SEE ME COME ALONG 

TRY NOT TO FOCUS ON WHAT IS WRONG; 

I AM A PERSON JUST LIKE YOU, 

WHO NEEDS AND DESERVES A GOOD FRIEND TOO. 

JUST WALK BESIDE ME STRAIGHT AND TALL 

AND BE THE FRIEND THAT I CAN CALL 

WHEN I AM LONELY AND AFRAID. 

JUST REMEMBER WHAT I'VE SAID: 

ALL YOU NEED IS TO UNDERSTAND; 

DO NOT JUDGE JUST TAKE MY HAND. 

 

- Bill Hiltz 

1998 

 

 

I thank Bill, Joyce, and Arn for coming on the podcast to share their story and insights!

 

Love & Respect,

Eric

 

Resources:

 

Walk a Mile in my Shoe: Video: Click Here

 

Walk a Mile in my Shoe Website: www.inmyshoe.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

#027: Creating a Culture of Possibility, with Jeff Dobbin

In this week’s podcast/ blog our featured guest is Jeff Dobbin, Executive Director of Partners for Planning (P4P) in Toronto Ontario. Jeff and I discuss the idea of creating a culture of possibility for people with disabilities, why planning and intentionality is so important, the three most important building blocks to think about when getting started with planning, and the resources that P4P provides to help you create an incredible ordinary life.

 

P4P, an affiliate of PLAN BC and a member of the Ontario Independent Facilitation Network (OIFN), is a family driven organization that started in 2009 to create resources and community supports for families caring for a relative with a disability. They developed the P4P Planning Network, which is an online resource that was created for families across Ontario, but is accessed by people across the world!

 

The online tool provides valuable information on six key areas; life planning, building relationships, work and contribution, legal and financial planning (RDSP), creating a home of your own, and supports.

 

P4P is also very well known for the webcasts that they produce on these six areas where they engage in thoughtful discussions with experts, and take live questions from the audience. They host approximately 40 free webinars per year and you can check out their upcoming webinars on the planning network home page.

 

The P4P website also hosts a doc zone – short documentaries profiling short video stories to help us learn what is possible and a professional services directory that can help you find professionals with disability expertise. P4P also published the book titled ‘Safe and Secure’, by Al Etmanski.  They are currently updating Safe & Secure and it will be available on the Planning Network this fall.

 

All resources on the Planning Network are available at no cost.

 

 The Culture of Possibility:

 On the podcast, Jeff shares, “If people that haven’t had a lot of opportunity to be involved in their community - for example (they have been) in segregated schools, or a congregated program the whole idea of participating fully as a citizen is an extreme idea for many people. So, one of the things we do at P4P is share stories of hope and possibility to help people realize that people with disabilities can contribute and live full and unique lives.” (These stories are told on the webcasts, and in the doc zone.)

 

Planning Enables Possibility:

On the podcast Jeff shares, “What many families will tell us is that very little happens unless their family is intentionally involved in directing things. I have 3 kids, and they have more or less figured out their own lives – they have their own jobs, and financial resources and they have moved out, but I am fully aware that doesn’t always happen when there is a disability involved. Also, with all the waitlists in Ontario you can’t sit back and wait for the government to provide all the supports you need. We also encourage families to be proactive because of the individualized funding that has become more available, and because of a move toward community based approaches. Families have an opportunity to create incredible things around work, contribution, and relationships.” 

 

3 Things to Consider When Starting Your Planning: 

On the Podcast Jeff shares:

1) Create a Vision. Think about the life you would like to help your son or daughter create. What is important? What is possible? Don’t be afraid to dream.

 

2) Building Relationships. Who will be there for your sons and daughters when you can no longer care for them? Don’t be afraid to invite others into your life and your son’s and daughter’s life. (Eric: Building relationships has had a huge impact on my sister’s life, but also my mother’s life – as she feels more supported. This is something that an independent facilitator or coach can support with. To learn more about independent facilitation you can listen to episode 3, ‘Independent Facilitation and Support Circles Enriching lives’, and also check out the Ontario Independent Facilitator Network (OIFN) website.

 

3) Financial Resources. Access the financial resources that are available to you to support making your vision a reality. In Canada, you can open an RDSP if you are eligible for the disability tax credit (DTC). For example, if you open an RDSP at the age of 5, and you qualify for grants and bonds fully, at age 35 you would have a $350,000 asset and over a lifetime $1,000,000 asset. This type of asset is a life changer. Check out the P4P learning center to learn more about the RDSP. 

 

I thank Jeff for coming on the podcast/ blog to share the message of creating a culture of possibility for people with disabilities, and for educating us on the resources the P4P team has created to help us live into the vision we create for ourselves and our loved ones.

 

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

 

Love & Respect,

Eric

 

Resources:

Partner's for Planning (P4P) Website: Click Here

Ontario Independent Facilitation Network (OIFN) Website: Click Here 

The Art of Belonging (Ted Talks Inspired): Click Here

Contact Jeff Dobbin: jdobbin@p4p.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

 

#024: Breaking Down Stigma, with Jackie Goldstein

In my conversations with people with disabilities, their families, and supporters one of the biggest dreams they have is social acceptance. This blog and podcast gives steps we can take to start creating a more inclusive world for people with disabilities.

We are talking stigma in part 2 of our interview with Jackie Goldstein. 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 world, and she also discusses Dr. Patrick Corrigan’s work on breaking down stigmas.

 Miriam-Webster Dictionary defines stigma as: a set of negative and often unfair beliefs that a society or group of people have about something. Paraphrasing from the podcast Jackie Goldstein shares, “Stigmas develop out of stereotypes. When people think of mental illness (and disability) we are afraid, and we think people with a mental illness will be a problem to take care of. We all develop stigma about people’s skin colour, age, and country of origin, etc. What we do is we take limited information, and we apply it to an entire group. This isn’t fair to the individual.”

 Patrick Corrigan US based Author and advocate for people with mental illness, has conducted research studies on stigma and found that there are three different approaches we can take to break down stigma. Patrick Corrigan focuses on mental illness, but I believe there is a large overlap with disabilities in general.

 

 The 3 Common Weapons to Break Stigma:

 

1. Protest. Making people aware of the cause/ situation. Example: March and demonstrate in the street, or write a letter to the editor.

2. Education. Provide information so that people can make informed decisions. Example: Listen to a podcast or watch a video to learn about a cause or situation.

3. Contact. Interaction with a person that you hold that stigma against. Example: Have a conversation with a person that has a mental illness.

 

 

Effectiveness of These Weapons:

 In a 2002 publication of World Psychiatry, Patrick Corrigan and Amy Watson shared these findings in the article titled, ‘Understanding the impact of stigma on people with mental illness’. 

“Protest is a reactive strategy; it attempts to diminish negative attitudes about mental illness, but fails to promote more positive attitudes that are supported by facts. Education provides information so that the public can make more informed decisions about mental illness. This approach to changing stigma has been most thoroughly examined by investigators. Research, for example, has suggested that persons who evince a better understanding of mental illness are less likely to endorse stigma and discrimination (17,19,52). Hence, the strategic provision of information about mental illness seems to lessen negative stereotypes. Several studies have shown that participation in education programs on mental illness led to improved attitudes about persons with these problems (22,53-56). Education programs are effective for a wide variety of participants, including college undergraduates, graduate students, adolescents, community residents, and persons with mental illness. Stigma is further diminished when members of the general public meet persons with mental illness who are able to hold down jobs or live as good neighbors in the community. Research has shown an inverse relationship between having contact with a person with mental illness and endorsing psychiatric stigma (54,57). Hence, opportunities for the public to meet persons with severe mental illness may discount stigma. Interpersonal contact is further enhanced when the general public is able to regularly interact with people with mental illness as peers.”

 

These research findings highlight the importance of sharing our individual and family stories of disability to break down stigma. We can educate people about our disabilities through a blog, video, or story book. Or better yet, we can make contact with others and share our story in conversation. This creates a common understanding and builds connection. A story I've heard of a family that effectively broke down stigma for their daughter with a disability wrote a story book complete with pictures to share their daughter's journey with her classmates (she was in a regular classroom). The other kids in the class were so interested in the story they each started to take the book home to share the story with their parents. After learning the daughter’s story, the other kids and parents were no longer scared of the disability, and started to interact with her more.

 

Patrick Corrigan also writes about self-stigma and how it negatively impacts us. You can read more about self-stigma in this interview with Patrick Corrigan by Aisha Jamil: Q&A with Dr. Patrick Corrigan: Public Disclosure Promotes Empowerment and Reduces Self-Stigma

Jackie leaves us with a brilliant quote from the podcast, “When you are all doing the same thing people forget about the disability and it isn’t noticed.”

 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:

Email Jackie: jlgoldst@samford.edu 

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

 Q&A with Dr. Patrick Corrigan: Public Disclosure Promotes Empowerment and Reduces Self-Stigma: Click Here

 Dr. Patrick Corrigan, World Psychiatry publication: ‘Understanding the impact of stigma on people with mental illness’

  

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