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Empowering people with disabilities to live an incredible ordinary life.
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Tuesday Dec 11, 2018
Tuesday Dec 11, 2018
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!
Thursday Nov 23, 2017
Thursday Nov 23, 2017
In this week’s episode on the Empowering Ability Podcast we welcome guest Dr. Annick Janson, whom resides in NZ. Dr. Annick Janson is a clinical phycologist, and a mother of 3 children. Her youngest child, Yaniv, is on the spectrum, and life changed quite a bit when he came into their lives. Annick carries the deep personal experiences of being both a family member and a service professional.
As a professional, clinical phycologist, Annick followed a typical pathway, and became dissatisfied with the outcomes they were getting.
On the podcast Annick Shares:
“4 years ago, I met Sylvana Mahmic, CEO of Plum Tree service provider for young children that have a developmental disability in Australia - serving 700-800 people per year. [Both Sylvana and Annick have a child with a disability.] (They asked) if we had to scrap everything, what would be the best service offering for families that will make a serious difference?”
They took a design thinking approach, including an ethnographic research approach and rapid prototyping to build a learning program called 'Now and Next'.
Annick Shares, ”(We looked at) how can parents use their learning to build on success, and get better, and better results for their children. We started with 18 sessions, and it is now down to 8 group sessions, and 1 one on one session.
The learning program shifts the mindset of parents to understanding the power of their own agency, and the control they have over their wellbeing.
Why a Learning Program?
Paraphrasing from the podcast Annick Shares:
We are using a learning program because we found people (parents) are feeling overwhelmed, and there generally isn’t something wrong with them (grief, denial, etc.). Annick didn’t want to generalize, but what they found is that what people need is to learn strategies and solutions to get the results that are meaningful to them. Now and Next is a learning framework, rather than a therapeutic framework.
The Now and Next Program VS. The Traditional Model
There are 5 areas of differentiation that the Now and Next Program focuses on Vs. the Traditional Model.
Paraphrasing from the Podcast Annick shares:
1. The Initial Interview:
In the initial interview with a professional they ask you “Tell me about your child?” This was a stressful situation as a mother. You eventually say… "my child can’t do this, and can’t do that." Parents are left feeling terrible. Until now we haven’t really had a better way.
In the Now and Next Program, we used the theory of gamification and created a game called, 'Pictability'. We chose pictures for the game based on our research of what people had used their individualized funding for. We designed the game so that people are brought straight into the strength domain using projective identification. People are able to identify a great future for their child and create a vision board with a long-term vision, and short-term goals. Games can bring out a lot of creativity and learning.
2. Notes are Shared:
In a typical parent – professional relationship the professional is the one that is taking and keeping the notes. These are often written up in a report by a professional that may be written in jargon and can be hard to understand for families.
With Now and Next Parents hand write their own goals, and we use technology to create a multi-media report so those goals can be shared with loved ones and supporters easily.
3. Working on Goals:
In the traditional model, I often hear that it is really hard for parents to come up with goals, and the goals are written up by the professional, as mentioned above.
In Now and Next, parents define and work on their own goals, and they become empowered. Parents choose their own goals, and parents are committed to these goals because they have chosen them.
4. Positive Psychology:
The Now and Next Program is the first of it’s kind (to Annick’s knowledge) to incorporate the concepts from Positive psychology. Traditionally psychology looked at how we can get someone from a -3 closer to zero, say -1. Positive psychology looks at how can we get someone who is at zero to +2.
Martin Seligman, one of the forefathers of positive psychology, taught us the concept of learned helplessness, which says that we bear unpleasant circumstances because we have learned they are un-escapable. But, through prospection we are able to look into the future and build a better future for ourselves. We looked at the prospection model and integrated these ideas into our model.
5. Sustainable and Scalable:
With the traditional model, there is a power imbalance and families are dependent on professionals. This is not sustainable. There is limited funding for professionals, and we cannot rely on this.
When I talk to professionals and parents all around the world and ask them how they would rate their partnership their answers don’t always match up. At the end of the day, parents are expecting professionals to do the work to ‘fix’ their child. As a society, we have put professionals in high regard, and we have given them power.
With the Now and Next Program we hold parents as the experts, and we are giving parents the tools they need to build the future they want. We have also found that Parent to Parent facilitating has proven to be most effective because of the deep understanding and empathy parents have for each other. This contributes to the scalability of the program because participants are becoming facilitators, and they can then train local people.
The Now and Next Program is measuring the amount of agency (i.e. empowerment) that a parent has, and they have demonstrated significant increases post program.
“In April 2017, the peer facilitators and alumni of the Now and Next program held their inaugural conference, entitled ‘By Families, For Families’, in Sydney, Australia. At this conference, something groundbreaking transpired, something both profoundly significant and genuinely radical: parents of young children with disability and developmental delay actively accepted responsibility for asserting their “natural authority” (Kendrick, 1995) in their partnerships with their child’s professionals and therapists.” Read more from the source article here.
Annick Reflects on the turning point with her son, Yaniv:
“I was disappointed in professionals trying to get Yaniv to fit into a ‘normal’ box, (which wasn’t working very well). There was a lot that he was teaching me, and we decided to go for the amazing and genius box. In high school, Yaniv became interested in art. In art class, he required less of a teacher aid, and this motivated Yaniv. Whereas, in the more academic classes he needed more of an aid. We took the ‘Eye of the needle’ approach, and everything they were trying to teach Yaniv would go through art. An artist needs to have a bio, and the way that you write it is by pushing this button on the computer. Today, Yaniv is an international artist. Learn more about Yaniv and his art through his website Yanivjanson.com.
A huge thank you to Dr. Annick Janson for coming onto the podcast! If you would like to learn how to bring Now and Next to your area please reach out to Annick! (email: annick@egl.ac.nz)
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Annick’s email: annick@egl.ac.nz
Website: egl.ac.nz
Blog: Click Here
Videos: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Jul 25, 2017
Tuesday Jul 25, 2017
Founder of online social media platform My Disability Matters, Dale Reardon, comes on the podcast to discuss this new platform for people with disabilities.
Dale, now 47, went blind at the age of 17 from Leber hereditary optic neuropathy, which is an inherited form of vision loss that usually begins in a person's teens or twenties. Dale has had an abundant career as a lawyer, tourist operator, and even worked for the Australia tax office before becoming a technology entrepreneur alongside his wife and creating the My Disability Matters platform.
The My Disability Matters Platform
My Disability Matters initially started as a news publishing and republishing platform for blogs of disabled people. The idea came when Dale saw a growing distrust from the disability community in disability news publisher, The Mighty. Dale says, The Mighty was publishing stories that exploited people’s disability as inspiration, also known as inspiration porn or ableism. Dale and his wife then evolved the news publishing idea into a social media platform for people with disabilities.
Paraphrasing from the podcast, “Dale found that discussing disability issues on existing social networks can feel unsafe because of the bullying and trolling that goes on. The My Disability Matters social platform provides a safe, supportive environment where disability issues can be discussed without fear. Living with disability can be lonely and isolating because of barriers such as transportation, and an online platform allows isolated people to form friendships online. Dale shares, when he was losing his eye sight a family with father and son who were blind took him under their wing and helped him to see that he would still be able to live a normal life. Dale hopes to create the space for many of these connections to happen for people with disabilities.”
At the date of publishing this blog and podcast, 1,650 people across the world so far are using the My Disability Matters platform. I encourage you to check out the platform at www.mydisabilitymatters.club. Create your free account, and start to build relationships with like-minded people.
Australia’s National Disability Insurance Scheme (NDIS)
On the podcast, Dale provides an overview of Australia’s National Disability Insurance Scheme (NDIS), which is a new way of providing support to people with disabilities in Australia since 2013.
Paraphrasing from the podcast Dale explains, “The NDIS is designed to give money to people who have a severe and profound disability to take care of their needs. Up until 2013, Australia used block funding (the government provided grants to organizations), and the organizations then served as many people as they could. In simple terms with the NDIS, a person with a disability will have a meeting with the government to determine how much help they need, they are then provided with the funding needed to support their disability, and they are free to hire the staff that needed without being bound to a support organization. When the NDIS roll out is complete in 2019, 460,000 people with the most severe disabilities will be covered under the insurance scheme. On the whole, there is probably about 4 million people in Australia with a disability. There are growing pains, but the hope is that the NDIS will revolutionize disability care in Australia."
To learn more about how the NDIS works, how it is helping people with a disability, and the associated growing pains tune into the podcast.
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:
My Disability Matters Social Platform: Create your free account - Click Here!
My Disability Matters News: www.mydisabilitymatters.news
Contact Dale Reardon: dale@mydisabilitymatters.club
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
Tuesday Jul 04, 2017
Tuesday Jul 04, 2017
Al Etmanski and I talk about how to bring social change to life by thinking and acting like a movement, the Registered Disability Savings Plan (RDSP), basic income for people with a disability, and the current state of the family and individual arms of the disability movement.
Think and Act Like a Movement
Al is the author of the book, ‘Impact: Six Patters to Spread Your Social Innovation’, and Al and I discuss the first pattern; think and act like a movement.
Paraphrasing from the podcast, Al tells us:
“It isn't about creating your own movement - we are all already part of many movements…. the question is which ones do we want to bring our energy and resources to. Thinking an acting like a movement is important because big ideas only come into reality when others feel that they have something in common. Movements create a popular support, and the cultural receptivity that emboldens politicians (enables the politician to make bold decisions). Most of the time politicians will ignore your proposals unless they pick up that there is a large degree of receptivity in the public. This is what makes movements more powerful than organizations. Movements don't happen overnight, they take time and become long term trends.”
An example of thinking an acting like a movement is how PLAN BC, an organization Al Co-Founded, led the charge to bring the RDSP to life. The RDSP is a savings plan for Canadians with a disability - enabling people with a disability to save for the future in a way that does not impact eligibility for government supported programs. The idea started at PLAN, but they realized they wouldn't be able to lobby for this change on their own; they had to bring in other people. In order to address the broader initiative, they created alliances with organizations, families, strangers and adversaries and tried to get as many people moving in the same direction to achieve the ultimate end outcome – financial security for people with a disability in Canada.
How do we think and act like a movement?
Al Suggests:
1) We need to calculate the movements you are already part of.
2) Identify the players that your movement touches on.
3) Of those players, identify those that are aligned with your values, and that you would want to work with.
4) Then determine how can you contribute, or how can your organization contribute. If we start with 1 or 2 % of our time and resources you can make a difference.
I got a ton of value from Al’s book ‘Impact: Six Patters to Spread Your Social Innovation’. I highly recommend you get yourself a copy if you are looking for a guidebook to bringing your social innovation to life.
The RDSP
I haven’t yet covered the RDSP on the podcast, so Al provides a high-level overview of how the RDSP works, and the benefits it provides. To sign up for an RDSP you must be eligible for the Disability Tax Credit (DTC). If you are eligible, or think you might be eligible for the DTC I highly recommend that you consider opening an RDSP to support securing your, or your loved one’s financial future. I will be covering the RDSP in greater detail in a future episode – so for now you can learn more by listening to this podcast with Al Etmanski, or by reading more from the government’s website.
The Family and Individual Arms of the Disability Movement
I ask Al to give his perspective on the current state of the disability movement, and he suggested that there many arms of the disability movement and to simplify it for our conversation we discuss the family and the individual arms of the disability movement.
Current State of The Family Arm
Paraphrasing from the podcast, Al tells us:
“The family arm isn't as strong as it used to be - I don't see the representation from younger family members that there used to be there 20 years ago. (Al hypothesizes that) this could be because the existing players aren't reaching out, or the agenda is not relevant to younger families. The medium of expression has changed dramatically and it has me wondering where the current limitations of the family arm are currently related to our adaptation into the social media world.”
Current State of Individual Arm
Paraphrasing from the podcast, Al tells us:
“There is a huge shift with how people with disabilities see themselves, and see themselves in the world. Al coins this as an ‘evolution of consciousness’. I come from and era where we were asking people to forget about their disability, and to push it in the background. We were asking society not to notice the disability. I am seeing an evolution of consciousness that seems to be comparable to the rising of women in the woman’s rights movement, and minorities in the civil rights movement. People (with disabilities) are taking back the language and beginning to describe their situations the way they are experiencing them. I've begun to see this everywhere, and I think this is so significant. I think it demands that we think about what role we have as advocates, supporters, and family members to make sure that we don't get in the way.”
On the podcast, Al shares the moment he realized this evolution of consciousness in a story as a father with his daughter Liz. Liz acknowledged her disability during a spoken word performance in front of an audience and Al states, " It was both the real deal, and it was no big deal." The full story is available on the podcast.
There are also many groups of people that have emerged across Canada that are interpreters of this evolution, such as the organization Exeko. Exeko provides ‘intellectual mediation’ with the assumption of intellectual competence, and their job is to make sure others understand what people with a disability are saying, untampered.
Basic Income
Al is currently working on the basic income movement to provide a guaranteed basic income for people with a disability in British Columbia, Canada. As a comparison, think guaranteed income for seniors (ex. Canada Pension Plan). The idea is to end the current welfare framework that has restrictions and penalizes people, and to provide a guaranteed basic monthly income with no restrictions, or requirements for reporting. Any additional income would be additive and be taxed accordingly, but would not disqualify you from receiving the basic income. If you are interested in learning more, or contributing to this movement you can check out The Canadian Basic Income Network.
My sincere gratitude goes out to Al for sharing his insights with us, and for the work he has done and is doing to make the world a better place. Thank you, Al!
I couldn’t cover all the content from the podcast in this blog – there was just so much rich content! I consider this podcast a ‘must listen to’ for the opportunity learn from one of the most insightful and influential people in the social innovation and disability space. Also on the podcast, Al gives us a sneak peek inside the current book he is working on. Listen to the podcast to find out more!
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:
Website: aletmanski.com
Al Etmanski's Blog: http://aletmanski.com/blog/
(Writes about issues for people who want to make the world a better place.)
Article: 'The 'C' In Canada Stands for Caring' Vickie Cammack Click Here
Al’s book ‘Impact: Six Patters to Spread Your Social Innovation’
Al's Blog referencing King Arthur’s Night (‘Evolution of Conciousness’) http://aletmanski.com/impact/artists-arent-ahead-of-their-time/
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