Episodes
Friday Dec 29, 2023
Friday Dec 29, 2023
Download a FREE copy of my “7 Strategies for More Independence” guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll
As a caregiver, you dream of your loved one leading an independent life, meaning more freedom for your loved one... and for you! In this video, I share insights from families who are making significant progress towards independence with their loved one month after month.
Discover three key strategies for more progress:
1) Persistence with Intention
2) Patience for Your Loved One's Pace
3) Embrace Positivity
Listen to this podcast to learn how to implement these strategies to make 2024 the best year yet for your family.
🚀 If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you make sure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome ordinary life for your loved ones, ensuring their care and support now and in the future.
🎁 Download my FREE “7 Strategies for More Independence” guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
🎙️ Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
🌐 Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
🔔 Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
👨👩👧 Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Thursday Dec 21, 2023
#096: How To Teach Social Skills To People with Autism or a Developmental Disability
Thursday Dec 21, 2023
Thursday Dec 21, 2023
Download a FREE copy of my “7 Strategies for More Independence” guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll
Do you want your loved one with Autism or a developmental disability to have better social skills so that they can have more friends and better relationships with family members?
In this podcast, I give you 3 game-changing strategies to improve social skills by enhancing communication and relationships for your loved one with a developmental disability or Autism.
👉 Key Points:
1) Highlight Your Loved One's Value
2) Practice Conversations
3) Use Social Stories
Implementing these strategies not only enhances how others perceive your loved one but also boosts their confidence. More connections mean increased safety in times when you can't be there. Watch the video to learn how to use these 3 strategies to help your loved one improve social skills and have more connection and relationships in their life.
🚀 If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll: Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you make sure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome ordinary life for your loved ones, ensuring their care and support now and in the future.
🎁 Download my FREE “7 Strategies for More Independence” guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
🎙️ Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
🌐 Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
🔔 Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
👨👩👧 Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Tuesday Dec 12, 2023
#095: 3 Strategies to Make the Holidays Easier For People with a Disability
Tuesday Dec 12, 2023
Tuesday Dec 12, 2023
Looking for more strategies to nurture your loved one’s independence? Download my free “7 Strategies for More Independence” guide: https://www.empoweringability.org/independence-tips/
The holidays can be tough when you have a loved one with a disability, but guess what? I've got your back! 🤍
In this podcast, I'm sharing 3 incredible ways to make this festive season a bit brighter for both you and your loved one.
✨ Key Points:
Give: Discover how a thoughtful, effort-filled gift can showcase your loved one's capabilities and spread joy.
Contribute: Learn how to help your loved one find a valued role at gatherings, supporting confidence and connections.
Space: Navigate the holidays with ease by understanding and respecting your loved one's comfort level with other people.
🌈 Subscribe for Weekly Goodness! If these strategies resonate with you, hit that subscribe button! 🚀
🎁 Free Gift for You! Looking for more ways to nurture independence? Dive into my '7 Strategies for More Independence' PDF guide. https://www.empoweringability.org/independence-tips/
Let's make this holiday season a little more joyful! I'm Eric Goll, and together, let's take a small step forward toward an awesome, ordinary life. 🌈💖
Saturday Sep 23, 2023
#091: Breaking the Caregiving Dependency Cycle
Saturday Sep 23, 2023
Saturday Sep 23, 2023
Ever catch yourself worrying that you’re loved one isn’t capable of independence?
Trust me, you’re not alone. My mom felt the same way about my sister Sarah.
Mom was so worried that Sarah couldn’t even get out of bed on her own. The truth was something else entirely.
… the lengths I had to go to prove it? Let’s just say it’s a story you don’t want to miss!
AND it could very well change how you approach your own caregiving journey.
Let me tell you the story… listen to this episode!
with gratitude,
Eric
P.S. Transform worry into action – Prepare your loved one for independence and a secure future:
Friday Sep 08, 2023
Friday Sep 08, 2023
You’re a loving mother committed to your loved one’s growth.
I know it’s challenging, but there’s a way to help your loved one’s independence flourish.
This short podcast reveals two stories, from family members like you, who transformed their loved one’s lives using daily routines, consistency, and even failure.
Growing your loved one’s independence is possible, and I’ve got the next steps for you in this podcast!
With gratitude,
Eric
Claim your free guide to help you grow your loved one's independence: Download here
Friday Sep 01, 2023
Friday Sep 01, 2023
Is your loved one's progress feeling slow?
I want to share a story with you, one that offers a path to independence that you've been looking for.
In this podcast, you'll learn from Lori's journey, a mother who started breaking down bigger tasks for her daughter into small, manageable steps. Lori's patience and pacing paved the way for her daughter's growing confidence and independence.
This story isn't just about Lori's daughter; it's a process you can use with your loved one.
Listen to learn how you can use small steps to help your loved one make more progress.
With gratitude,
Eric
Claim your free guide to help you grow your loved one's independence:
Download here: https://www.empoweringability.org/independence-tips/
Friday Feb 24, 2023
#078: No one dreams of going to a day program
Friday Feb 24, 2023
Friday Feb 24, 2023
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.
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.
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:
Friday Feb 17, 2023
Friday Feb 17, 2023
Spencer and his mom Elaine joined me in this conversation to share how they went from butting heads with each other to collaboratively creating an Awesome Ordinary Life for Spencer.
For them, it felt like other people were picking up their lives after COVID restrictions eased, and they were stuck in isolation.
Spencer shared that he didn't want to leave his bedroom and was on the edge of depression.
Elaine and I started to work together, and Elaine learned to shift from being the caregiver to the coach. When Elaine started collaborating with Spencer, they took some big steps forward.
One big step forward was starting Spencer's support circle of friends, which is a group of people in intentional, reciprocal and freely given relationships with Spencer.
Spencer's confidence has grown; he's exploring his interests in community, and even landed a paid part-time job!
P.S. Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop:
Friday Feb 10, 2023
#076: People do NOT want to live in group homes.
Friday Feb 10, 2023
Friday Feb 10, 2023
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:
Friday Feb 03, 2023
#075: From dependence to independence, hear mother Alina’s story.
Friday Feb 03, 2023
Friday Feb 03, 2023
Alina, the mother of 17-year-old Juliana, joined me to talk about their experience of going from complete dependence on Mom to Juliana growing her capability and independence.
Alina was doing EVERYTHING for Juliana. The idea of independence was there, but Alina was locked into the habit of doing everything.
When Alina thought about Juliana's independence, her fears kicked in, creating a state of overwhelm and keeping them stuck. This resulted in Juliana learning that she couldn't do things.
Then things started to change when Alina and I began to work together. Alina's awareness and mental outlook shifted, which was the key to unlocking Juliana's independence.
Alina no longer feels like the caretaker and has to solve all the problems. Juliana and Alina are now on an equal footing, having more open dialogue, and Juliana is starting to lead her own life!
P.S. Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop:
Wednesday Dec 18, 2019
#061: The Power Of Positive Vision, with Lorna Sullivan
Wednesday Dec 18, 2019
Wednesday Dec 18, 2019
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
Wednesday Jun 12, 2019
Taking Charge of Life, with Libby Ellis
Wednesday Jun 12, 2019
Wednesday Jun 12, 2019
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/
Wednesday Mar 06, 2019
Bonus: If we aren't there for our loved one with a disability, who will be?
Wednesday Mar 06, 2019
Wednesday Mar 06, 2019
... If I am not there to care and look out for my son or daughter, then who will be? It is a big question, but it is also something we avoid talking about because we have to realize our own death. BUT, if we don't have these conversations - what are we leaving behind?!
From the hundreds of families I have spoken with I've learned that it is a massive hole. If you are the go-to person for your loved one with a disability, and they are dependent on you and you aren't there for them anymore it is impossible for one person to step into your old shoes. It causes a ton of stress, anxiety, and disrupts several people's lives.
This is why we need to think about the relationships in our loved one's life, this is why we need to be intentional about a Personal Support Network. In this video, I show you how to do this.
CLICK HERE to learn how.
Enjoy,
Eric
PS. Having a strong Personal Support Network for your loved one with a disability is the best way I've found to support someone after their parents can no longer care. BUT - a Personal Support Network is more than that, it will provide in ways that you could have never imagined in the short term.
CLICK HERE to learn how!
Monday Mar 04, 2019
Bonus: The two things successful families are doing
Monday Mar 04, 2019
Monday Mar 04, 2019
Over the past few years, I’ve been thinking deeply about how to best support families with a loved one with a disability to create a happy and full life for their loved one - and a good life that isn’t dependent on parents (forever)…
I know this is possible because I have friends with disabilities who have created this life - my family is going through this transformation, and the families I work with are going through this transformation. In this video, I share one of their stories with you.
... and I've found that there is there is ONE key thing in common for all of these families… They have Created a Vision!
As families, we need to be able to imagine the best possible life for our loved one with a disability so that we can then create it.
Well, actually there are TWO things all of these families have in common. There are two paths that you can choose as a family (and neither is risk-free). In this video, I tell you about these two paths - and I share with you the ONE path that these families are choosing to create the best life possible for their loved one.
Thursday Jan 31, 2019
#056: How To Create The Good Life, with Genia Stephen
Thursday Jan 31, 2019
Thursday Jan 31, 2019
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!
Wednesday Jan 09, 2019
#055: Navigating Grief, with Yvonne Heath
Wednesday Jan 09, 2019
Wednesday Jan 09, 2019
Yvonne defines grief, how to support others that are grieving, and shares her 7 takeaways to navigate through life, grief, and end of life.
In this episode of the Empowering Ability podcast, we have an in-depth conversation on grief with nurse and author, Yvonne Health. In this conversation, Yvonne defines grief, how to support others that are grieving, the difference between quality and quantity of life, and her 7 takeaways to navigate through life, grief, and end of life. Yvonne is an inspirational Speaker, author of the book ‘Love Your Life to Death’, and a TV and Radio host.
(Note: 25% of 'Love Your Life to Death' book sales purchased through this link go directly to Community Living Ontario)
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.
Why Are We Talking About Grief?
YH: “I didn’t choose this, it chose me. Looking back at a 27-year nursing career we don’t talk about grief, we don’t talk about death and dying until it arrives. Then we try and navigate through it. This causes excessive suffering. Grief is a part of our journey, but by avoiding it we are creating excessive suffering.”
Seeing this suffering as a nurse Yvonne had to do something about it, so she took a leap of faith wrote a book about it, and here we are.
As as a nurse, Yvonne became attached to people and she suffered tremendously. She realized this and she became aware of how she was suffering and became curious about it. This led her to have more conversations with other carers.
YH: “I asked fellow caregivers, are we well prepared for grief death and dying? And they said, no. Then I’d have conversations with two people with the same diagnosis of terminal cancer and their families and see drastically different experiences. One family was acknowledging and allowing all feelings - laughing and crying and being open, and being truthful about what was happening. That person died more peacefully and the family navigated through their grief and was able to get through and find happiness again. Then there were other families who were angry and bitter, and demanding more treatments and there weren’t conversations being had. There was no eye contact, I could feel the suffering. I could see this over and over, and I had this inner voice telling me we had to see something different.”
What is Grief?
YH: "Grief is whatever makes your heartache. Often it is death, but it can be divorce, a diagnosis, complications at birth, job loss, not making the team. Grief is a part of our life. Anger is often a very big part of grief, and it can come out."
How Do We Support Someone Experiencing Grief?
YH: “I [we often] don’t know what to do, I [we often] don’t know what to say. We are more comfortable avoiding people when they are grieving. But the most important thing is that we need people to just show up. A hug, a text, an email, sit in silence. Just sit with someone and acknowledge and allow their feelings and not try and fix it. You can’t fix grief, you just have to allow it. We have to get back to allowing our humanness. You are qualified to just show up.”
Quality of Life vs. Quantity of Life.
YH: “What is enough quality of life is enough for one person isn’t acceptable for another person. There is always a treatment that we can do, but the question is should we? Wouldn’t it be wonderful if we have the conversation before something happens? The time to have these conversations is not when you are facing life or death situations.”
EG: “We can create a thought experiment for ourselves and think - okay if I got cancer and I was given a prognosis of 2 years to live with intensive treatment that is going to reduce my quality of life for that time, or I could have 6 months to live with a high quality of life. Which would I choose? And, you can do this now from a rational place now, rather than a fear-based place when actually faced with the decision. This decision will likely also change over time as we age, or our life situation changes.”
YH: “These types of situations being made when things happen can fracture families, and create divides that are difficult to repair. Let’s normalize creating an end of life plan. Imagine the suffering that we can alleviate.”
EG: “Only 50% of people have a will. Get your will in order. This is especially important for a family where there is a person with a disability because any transfer of your estate to a person with a disability can drastically impact their social assistance benefits.”
Yvonne’s 7 takeaways to navigate through life, grief, and end of life
1. The Next Best Time is Now! The best time to talk about, plan and prepare for grief is when we are young and healthy.
2. It Takes a Village to support: the ill, the caregiver, the dying, the bereaved and each other.
3. When someone is grieving, Just Show Up!
4. To be empowered, resilient and compassionate, Show Up For Yourself First!
5. Structure Your Life in such a way that you are self-reliant.
6. Find your Post, and hold onto it.
7. What will Your Legacy be?
To get the summary description of Yvonne’s 7 takeaways go to http://the7takeaways.ca/ to learn more, or you can listen to us discuss these 7 takeaways on the podcast by clicking below.
Tweet-able Moments from the conversation with Yvonne:
“Love & gratitude are the answer, no matter the question.” - Yvonne's mother, Waves of healing
“Our legacy is what we create in every moment of every day. It is how we make people feel.” -Yvonne Heath
“It [life] isn’t joy or sorrow, it Is is a rollercoaster, and when we take care of each other we can get through it [life] with greater joy.” -Yvonne Heath
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:
Yvonne's Blog/ vlog
Book: Love Your Life to Death
(Note: 25% of 'Love Your Life to Death' book sales purchased through this link go directly to Community Living Ontario)
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!
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 29, 2018
#053: Personal Support Networks, with Rebecca Pauls
Thursday Nov 29, 2018
Thursday Nov 29, 2018
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!
Monday Nov 12, 2018
#052: Creating a Pathway to Employment, with Joe Dale
Monday Nov 12, 2018
Monday Nov 12, 2018
Joe Dale and I explore the untapped labour pool of people with disabilities, uncover the benefits of employing people with disabilities, and discuss approaches people with disabilities can take to gain employment.
Today businesses are asking, ‘Where do we find good people?’, and people with disabilities are asking ‘Where do I get a job?’. This podcast/ blog with Joe Dale, Executive Director of the Ontario Disability Employment Network (ODEN), explores these questions.
Joe has worked in the field of disability for over 35 years and spent much of that time addressing issues related to employment for people with disabilities. He is an internationally renowned speaker, speaking to business, governments, and not-for-profits on the issue of strategic engagement of people with disabilities in the workforce.
The Ontario Disability Employment Network (ODEN)
ODEN is a professional body of employment service providers united to increase employment opportunities for people who have a disability. They have over 110-member agencies, all in the business of helping people with a disability get into the workforce.
ODEN focuses on 4 core areas:
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Engaging and educating businesses on hiring people with a disability. They also support businesses to develop successful hiring practices.
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Supporting disability employment agencies with training that builds their capacities and skills.
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Advocating on employment for people with a disability to the provincial and federal governments.
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Engaging and educating other stakeholders that prepare people with disabilities for the workforce, including school boards and family groups.
The Employment Landscape
Paraphrasing from the podcast, Joe shares:
“There are a lot of barriers for people with disability to enter the workforce. However, there has been a drastic change in the last couple of years. Businesses are now moving from awareness of the benefits people with a disability can provide to their business, to how do we employ people with disabilities. And, thinking about what does it look like in our workplace?
We have done a lot of awareness over the last 10 years and this is starting to pay off. Businesses are also challenged with the labour shortages, so businesses are now looking at what was once considered non-traditional labour sources.”
Currently the unemployment rate is 5.5% in Canada, but what does that look like for people with disabilities?
Paraphrasing from the podcast, Joe shares:
“Statistics Canada reported that 49% of people with disability are not in labour market. This doesn’t include people who have never had a job or have given up on trying to find a job. For the 51% of people in the labour market, we are seeing anywhere between 16 – 25% employment rate. From this, we can assume people with a disability that are not working in Canada is around 70%.
In the US, they do their research differently, they show about 18% of people with a disability are working.”
What Do Businesses Need to Know About Disability?
Paraphrasing from the podcast, Joe shares:
“Businesses don’t know what they don’t know. Businesses aren’t fully aware of disability as a demographic. We try to illustrate what disability looks like in their community.
16% of Canadians identify that they have a disability across Canada. This is a very large demographic. If you add family and loved ones of those people, 53% of Canadian’s are impacted by disability. These people have a very strong connection to disability.
What would this look like in your place of business? We do this through case studies and by breaking down the myths and stereotypes..
We are shifting mindsets away from charity and pity, a mindset of contribution. This is what businesses need to see to get them to buy in and employ people with a disability in a sustainable way."
Learn can learn more about the Myths to employing people with a disability in this podcast/ blog with Laura McKeen.
What is the business case to employ people with a disability?
Paraphrasing from the podcast, Joe Shares the following case studies:
Case Study 1: Walgreens
Walgreens is a large pharmacy retailer in the United States that has inclusive hiring practices. In 2006, they opened a new distribution center in South Carolina. When staffing this distribution centre they started with the goal of staffing 1/3 of this workforce with people that have a disability. In the end, they hired 40% of their workforce with people that have a disability. At the end of the first year, this distribution centre was the most productive centre for all of Walgreens in the US.
A year later they opened a distribution centre in Connecticut and they went in with the same mindset and hired 45% of people with disability. It opened in 2007 and has had the highest production of all Walgreens distribution centers every year since it opened. They have a 63% reduction in employee costs! Lower absenteeism, lower turnover, and fewer workplace accidents. What they are seeing is higher productivity at lower cost. This equates to profits.
More on the Walgreens Case Study. Click Here
Case Study 2: Mark Wafer, Tim Hortons
Mark Wafer owed 6 Tim Horton’s coffee shops in the Greater Toronto Area, in Ontario Canada. 15% -20% of their staff was people who had a disability. Employees with disabilities had an 87% higher attendance rating, and no work injury claims. Mark’s coffee shops had a turnover of 38% in an industry where the average was 110%. At $4,000 per new hire, there was a significant reduction in costs. His employees with a disability had almost 0% turn over, and employees without disabilities had a 55% turn over, which was still half of the industry average. He put it down for employees being engaged because he is an inclusive employer.
These costs savings are often offsetting the costs of a little bit slower production or the cost of accommodations.
Additionally, prior to Mark selling his business, his coffee shops ranked #1, #2, #3, #4, #5, and #6 in key sales/ profitability indicators among 500 Tim Hortons coffee shops in Central Ontario.
More on Tim Hortons Case Study. Click Here
Additionally, Joe shares:
“Many businesses are contacting ODEN today to learn about how to employ people with disabilities. We would like to get to 16 -20% of employees in a workplace be people with a disability.
We also see the growth rate for people with a disability that get into the workplace their growth rate is phenomenal. Within 2 or 3 weeks they can become a different person and can exceed expectations. This is due to the opportunity, environment, and role modelling.”
How can families and agencies help people with disabilities to gain employment?
Paraphrasing from the podcast, Joe shares:
“It’s really about raising expectations. Overall our expectations of people with a disability are too low. We need to identify the goal that we have for people that have a disability. If the goal is for the person with the disability to have a job, we need to create a different path. We need to change the educational system to support this goal.
For families, if employment is a goal what happens at home has to change. We need to ask questions like, ‘What do you want to be when you grow up?’ and we need to ask ‘Do we give them chores?’. We need to raise expectations, have high goals, and change the path to support these goals.”
I agree with Joe, we need to think bigger and get out of the disability box. This requires a switch from deficits thinking to contribution thinking, and we need to be a champion for that individual. Once you have people holding low expectations of you, you live up to those low expectations. We live up to expectations, so hold high expectations and be a champion for people with disabilities by upholding their dreams and influencing others to do the same.
Joe shares:
“There is research out of the US that shows the indicators of labour market attachment for people with severe disabilities are:
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A single paid job while in high school
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Family members and others around that have high expectations
This leads to asking the question, ‘How do we mirror the experiences for people with disabilities the same as those around them?’ Peers and siblings. This includes responsibilities, chores, and part-time jobs. This helps the person to also learn what they like, what they don’t like.”
Learned Helplessness
What I have observed in my work is that parents and supporters are trying to be helpful by doing things for the person with a disability, but by doing this it creates dependencies. It teaches the person with the disability that they can’t do things. Now when that person with a disability is asked to do something they have learned that they ‘can’t’ do the task, even when they are in a new environment. In positive psychology, this behavior is called Learned Helplessness. However, this can be changed with learned optimism. By the way, my family has been caught in the learned helplessness trap. I am not judging here, simply pointing out my observations.
Work or Activities?
Paraphrasing from the podcast, Joe shares:
“It is a challenge when activities, like bowling or swimming, get in the way of the work opportunity. Generally, we don’t do these things instead of work. This is a values proposition that needs to be considered by families. The more conditions we place on work, the more difficult engaging in work becomes.”
Insight: Put the job first, remove the conditions on the employment.
What suggestions do you have for people with disabilities that are 25 to 45 years old, and have never been in the job market?
Joe shares:
“It might mean backing up a bit and starting with a part-time job that many of us would have had while in school. Such as at McDonald's. But don’t let the progress start there. We need to start creating that path.
The more experiences a person has had the better their decision making becomes on what they would like to do 1 to 2 years from now or even tomorrow.”
Fair Pay for People with Disabilities
Joe shares:
“Working for free, or saying the person doesn’t need equal pay is a very bad attitude. Society values people that work, pay taxes and contribute, and much more so than people that live off the tax system. To see someone contributing to the tax system in your community brings value to that person.
It is important for peers and supervisors to see that person as valuable. If two people are working side by side and one person is getting paid full wage, and the other person is receiving less than full wage, it tells the rest of the world that that person is not as valuable as the person making full wage beside them. That is a real damaging long-term scenario. The perception is that the person with a disability as being seen as valued is critical. I fight against anything that looks like less than a fair wage. If the perception is that the person is less valuable, who is the person that is going to be let go in an economic downturn? The person that is seen as less valued.
Also, It is a myth that by working the person will earn less money with the Ontario Disability Support Program (ODSP). No matter what the person earns they will always have more money in their pocket at the end of the day. They never lose never money by working. It is a fallacy that people will have less money if they work."
I agree with Joe’s perspective on fair wage. Additionally, consider the person with a disability that is receiving less than an equal wage. If that person is perceived by others as not valued, then they will not feel valued themselves. If I am not feeling valued I am not going to be excited about going to work.
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:
ODEN Website: Odenetwork.com
Tim Hortons Case Study: Click Here
Walgreens Case Study: 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!
Wednesday Oct 10, 2018
#051: 9 Insights on Creating a Home for People with Disabilities
Wednesday Oct 10, 2018
Wednesday Oct 10, 2018
Learn from world class experts on housing for people with developmental disability.
I’m excited to bring you this podcast/ blog episode on the best of creating a home for people with intellectual/ developmental disabilities (IDD). In this episode, I have compiled audio clips that provide insights from 9 interviews I’ve completed with guests on creating a home for people with disabilities, along with my insights as a family coach. My desire to share this with you also comes from the experience of supporting my sister (Sarah) to create a home of her own over the last year. On July 4th 2018, Sarah moved out of our parent’s home and became roommates with me. This is Sarah’s first time living in a home of her own. There has been many events along the way that have come with incredible growth for everyone in our family, and support network.
9 Insights to Creating a Home Episode (I.e. Best of Home Episode)
This episode is a collection of insights shared by 9 guests who I consider as experts in the area of creating a home. Each guest has either directly been involved in creating a home for people with disabilities and/ or has evaluated housing services for people with disabilities. I’ve constructed this episode in a way that shares what I believe will lead to the best outcomes for people with disabilities and their families. You may agree or disagree with the perspectives shared in this episode, however, I invite you to consider these perspectives to determine what is true for you.
You will notice that I am using the language creating a home vs housing. I do this because housing refers to the physical building, and the physical building is only one component of what must be considered when creating a home for a person with a disability. When creating a home we must also consider the person’s other needs; their supports, their relationships, and what they will be doing once they are living in the space, etc..
Creating Your Home Workbook (Free)
Additionally, I have updated the ‘Creating Your Home Workbook’, to include these insights and perspectives. The original workbook was downloaded over 100 times, and I’ve sent the updated version to those of you who have already downloaded the original workbook. This workbook is designed to guide your thinking to create the best home for an individual with a disability, and to encourage you to take the first steps to make this home a reality!
Claim your FREE 'Creating Your Home Workbook!
The 'Housing' Problem:
If you are reading this blog you intuitively know that there are many additional considerations for a person with an intellectual/ developmental disability (IDD) when creating a home. Supports that exist to help vary by jurisdiction globally. Where I live, in Ontario Canada there is what many would call a housing crisis. As of 2016, the Ontario Government Ministry of Community and Social Services was supporting approximately 18,000 people with a developmental disability in group homes and other supported living, and an additional 9,700 people were on a waiting list for residential supports. So, the reported demand for residential housing support is over 50% greater than the supply. The demand is likely higher than reported because it obviously doesn’t include people who have not registered for the list. Reference: (The Toronto Star, 2016)
In many areas around the world there are long waiting list for people with a developmental disability in search of government supported housing. As you continue to read, I am going to outline that government supported housing is actually not the optimal solution for an individual with an intellectual/ developmental disability (IDD) in the majority of cases. You are better off designing and creating an individualized home that meets the desires and needs of the individual, which provides them control over their life.
9 Insights on Creating a Home for a Person with a Disability
1) The individualized one person at a time option is the best option for people.
(Michael Kendrick (PhD) is a well-known international consultant in Human Services. Michael is involved in consulting, education and evaluative work with many governments, private agencies, advocacy groups, community organizations, universities and colleges across the globe.)
In episode #047 I ask guest Michael Kendrick, “Why is investment in group homes an outdated idea?”
In Summary Michael Answers:
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Group Homes are based on the assumption that people with disabilities should live together. We [everyone else] chose to live with people we are compatible with.
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Group homes are forced shared living, and this often creates a stressful living situation.
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Investment in group homes creates the idea that it is the only option for people.
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Individualized one person at a time is much better because it gives you much more choice.
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The group home option is no longer at the leading edge. It is a dying service model.
Many jurisdictions have a freeze on the growth of segregated living across the globe.
2) The people living in group homes want a home of their own.
(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.)
Paraphrasing from podcast episode #045 Lynne Seagle shares,
“…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), and 3) friendship and romance.
Lynne continues, “We [Hope House] had defined excellence as meeting all the rules – [our] paperwork was clean, [we had] no employee grievances, well-kept homes, and low staff turnover. We were looked at as the model in Virginia, USA. 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.”
As I reflected on my conversations with Lynne Seagle and Michael Kendrick, I thought about what it would look and feel like to live in a group home. I would be forced to live with people that I don’t know, and many of my freedoms that I enjoy would be taken away. I wouldn't always be able to do what I want to do, when I want to do it. I’d lose control of who is entering my home. This sounds terrible, and it is. Now to help you think about this further, there are similarities between group home living and living in a nursing home, or retirement home. When you think about living in a nursing home or retirement home do you get excited about the experience?
An important point to make here is that it is the model and system of group living that is oppressing people, not the people working in these models. The people are typically some of the most kind and caring people in the world. It is the model and system we need to think differently about.
3) Creating a home is about building a life, the house is only part of the picture.
(Ron Pruessen, is a father to Caroline, who has a developmental disability, is a member of Opportunities Mississauga, and he is the Chair of the Ontario Developmental Services Housing Task Force. The Ontario Developmental Services Housing Task Force was given $3MM in annualized funding, which has funded 18 pilot projects from the 200 proposals submitted.)
In episode #016 I ask Ron Pruessen, “As father, someone that is involved with a family group, and the housing task force what have you learned along the journey about housing?”
Ron shares, “There has been a lot of learning and frustration. The Government [of Ontario] is not doing enough and has a limited menu of things that they are doing [in housing]. There are many great ideas at the grass roots level. The variety of ideas is enormous, people have been extremely creative in imaging their futures. Individuals have been doing the visioning, and they see the possibilities out there.”
[In my opinion, this highlights the importance of individual options.]
Ron shares, the most significant example of creativity he has seen is building partnerships. The community can provide the best solutions. Not just because you can mobilize financial resources, but also because you can develop a wealth of opportunities (educational, social, employment), and this is incredibly important. The house is an important part of the picture, but it isn't the whole solution. Community connections improve quality of life, but the government can't do this, we have to do this.
Ron shares important insights in episode #016, which I have summarized above. However, there is one point that we discussed in that I do not completely agree with, and I failed to address this point previously. Ron shares, “I think the assumption for many years is that this [housing for people with a disability] is a government responsibility. It is the equivalent saying people need health care, which is provincially funded in the province of Ontario…. It is the equivalent of what we do for senior citizens in providing pensions and support for housing opportunities. It is a government responsibility, there is no question about it, I would argue. And, I don’t think the government isn’t doing enough. But, it is also a community responsibility…. What the community can do will provide better solutions to the problems.”
I agree with Ron’s comments that many people do hold the assumption that ‘Housing’ for people with disabilities is a government responsibility. This is the mindset that many of us continue to hold and it is perpetuating the ‘crisis’ state many families find themselves in. I disagree that creating a home is fully a government responsibility. Here is the reason why... When we [families] hold the assumption that the government is responsible for housing for our loved one with an IDD we give away the power that we have. We can put ourselves in a helpless state, or victim state. When we have hold this mindset that the government is responsible we accept the menu of sub-optimal options that the government provides us, and this puts us at the mercy of long waitlists, in many jurisdictions. And, this is a waitlist for sub-optimal options! If we hold the mindset that the government is responsible for creating a home for our loved one we are at the mercy of the government, and we give up our control. The good news is that we can take our power back. If families are feeling like a victim of a ‘housing crisis’ [i.e. you are waiting for government solutions], I invite you to consider making a choice to become a creator and to take your power back. In other words, the idea here is an invitation to take an active role in creating a home, vs a passive role waiting for a sub-optimal government solution.
On the flip side of this point, I agree with Ron in that we need to keep advocating to the government that more funding is needed to support our families in implementing/ funding our one person at a time solutions to creating a home. I believe Universal Basic Income (UBI) is a possible solution to the poverty situation that many people with a disability face. A realization that I have come to is that, the government isn’t going to solve our problems, but they can be a part of the solution.
[If you want to learn more about UBI I recommend listing to Sam Harris’s interview with Andrew Yang on the Waking up Podcast.]
4) Give people their own front door, and separate housing and supports.
(Chris Woodhead is the Group Director of Housing and Business Development for Dimensions UK. Dimensions UK supports 5,000 with learning disabilities and autism spectrum disorder (ASD).)
In my interview with Chris, In episode #025, he shares, “Dimensions UK’s aspiration is for people to have their own front door. Not all of Dimensions UK’s accommodation is in line with this aspiration at this time. For example, some housing is larger scale accommodation with 10 people living in one large accommodation, but over time Dimensions UK looking to remodel for a smaller scale more personalized approach. Housing and support are generally separate. Dimensions holds a core value that where you live is important to quality of life (health and wellbeing), but people should be able to choose who supports them. You shouldn’t have to move if you are unhappy with your support. There is a delineation between the tenancy agreement and the support contract. We operate around choice and control. If we get their housing right, and we get their support right then we hope they will continue to choose us.”
Chris also shares the Activate Model they have been piloting, which considers 8 different domains in each person’s life; 1) Physical health and wellbeing, 2) Communication and social interaction, 3) The physical environment, 4) Skills, 5) Relationships, 6) Service Staff, 7) Service Management, 8) Wider organizations. [Again, the physical environment (the house) is just a component of the solution.] The early results of this model in practice resulted in a 60% reduction in challenging behaviour, and an increase in satisfaction for support staff. If you would like to learn more about the research visit the Dimensions UK website.
5) Housing is a Community Issue.
(Janet Klees has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Currently, Janet is the Executive Director Durham Region Family Resources and Supports. Janet is the author of three books which are directly rooted in her experience with families, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades).
In episode #022, Janet shares, "Housing is a community issue, not a disability issue. In our most recent housing project, we partnered with Brockville and District Association for Community Involvement on a housing project called, ‘Housing is a Community Issue’. We asked families who were interested in housing to join us in discovering housing solutions together and 35 families showed up. This is incredible because we told the families up front that we don’t have any money to give. It shows how understanding families are that they are going to be part of the solution. Even in this housing crisis, people are still finding housing. With our project, we are thinking about what are the ways that people are finding to build, buy, rent, and to figure out housing. Then asking, ‘why can't these ways fit families that are looking for housing.'
This is an affordability issue, not a disability issue. If people need renovations it is a cost issue. We need to ally ourselves with all the people that are struggling for housing. There are organizations like Habitat for Humanity, and Options for Homes that we can ally with. If the Ontario Ministry of Community and Social Services (MCSS) is involved in housing they build a service, not a home. Families only have to think about their own son or daughter and think about works best.”
An important observation from Janet, “The change comes when the family realizes that this is their issue to work on.”
7 recommendations from Durham Region Families for for all of us (Government, organizations, and families) to think about as we work toward creating a good life for people with disabilities.
1. Home, housing and support are 3 different things and must be thought of separately.
2. Most housing challenges are affordability, not disability.
3. People with disability contribute to their communities, they are not a burden.
4.Getting good housing and support doesn't mean taking away the individual’s control of their life.
5.Providing renovation dollars allows families to be creative with their current home today (stabilize current situation) and allows for flexible housing in the future.
6. Stop funding congregated mega projects for people with disabilities, and disabilities / seniors. Commit to typical housing options and neighbourhoods.
7. Where there are families that are willing to create a home in community the government needs to support with resources. These are cheapest, most effective models, and they are currently the least funded [in Ontario, Canada].
6) A coach or independent facilitator can support you to create and implement your vision for creating a home (and a life).
(Jessica Cave, Creative Housing Supports Coordinator at Bridges to Belonging in Kitchener, Ontario. Jessica supports people with developmental disabilities and their families who are looking to make the next move in their life.)
In episode #031, Jessica shares that she supports families by helping to figure out what is best for the individual. Her organization starts with the belief that people can live in the community, and that they have the resources and readiness to make it happen. In other words, they start from a place of capability and abundance, which fuels us as creators!
Jessica takes a person directed approach and works directly with families in the Waterloo Region helping them to take this new mindset, and she facilitates the family through creating their vision for housing. Once the vision is created Jessica helps the family to think about what resources the family already has, such as, friends, community, support, and financial. Then they will think about and take the next steps are to bring the plan to life!
7) Creating a Vision: The Best Home for the Individual
(Marg McLean, Executive Director of Community Living St. Marys, and her team have been helping people with disabilities create their home, and support solutions since the 1980's when people were leaving institutions.)
In episode #013, I ask Marg “When thinking about creating a home, what should families be considering?”
Marg shares that people are going on the waitlist [for housing in Ontario, Canada] without thinking, talking, and planning what an ideal home looks like for them. (Note: This is exactly what my family did at the start of our housing search for my sister. Your family is not alone if this is the situation you are in currently.) What works well is for families to come up with a vision of what would be a good home in community.
Marg provides 4 guiding questions to begin your thinking on creating a vision for home:
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Where do you want to live?
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What kind of building do you want to live in?
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Who do you want to live with?
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What supports will be needed for your home?
[Note: the free ‘Creating Your Home Workbook’ includes these questions along with other questions and exercises to guide you in creating your vision for your home.]
Also, in Episode #013 Marg shares the story of 3 individuals that her organization supported to create their home. I also share my previous experience of living with my friend, who has a disability. These stories might just give you some ideas and I recommend you listen to this episode!
8) No one can tell you the right answer. You have to figure it out for yourself!
(Keenan Wellar is the Co-leader of LiveWorkPlay, a developmental service agency that works to facilitate community connections and relationships in Ottawa, ON.)
In episode #017 Keenan shares his reply to families that ask him, “What should we do in housing?”
Keenan shares that this is a question is deeply personal, and it isn’t a question that he can directly answer for a question. So, when asked this question, Keenan takes a coach approach by asking a lot of questions in order to draw out the best answer for that family. A couple of questions that Keenan will ask are;
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Where do most citizens tend to live in your community?
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What are the barriers the barriers to living in 'ordinary' housing? Are they actually barriers?
Keenan also shares that he will guide families through a 'thought experiment' by considering what it would look and feel like to move in to an apartment, which is a typical first home for many of us moving out of our family home for the first time.
[This is included as an exercise in the free ‘Creating Your Home Workbook’]
9) Be a creator: Start conversations, build relationships, and uncover community resources.
(Alice Mainland is the mother to Michael Mainland, who has a developmental disability. Michael is 39 years old, has a home of his own, a job, and a life in community)
In episode #023 Alice Mainland shares the story of her family’s journey to create an ordinary life with her son Michael. What I am highlighting from my conversation with Alice, is the creator mindset that she brought to the challenges that her family faced.
In summary from my conversation with Alice, 2 months before her son with an intellectual/ developmental disability (IDD), Michael, graduated from high school, Alice realized they had a problem; there would be nothing for Michael once school ended, and one of his parents would have to stay home to support Michael. As a result, the family would drop down to a single income. Alice started making phone calls to various support agencies, local government, and basically anyone with a phone number that might be able to help. The people she called were willing to help! With the support of a few agencies the family was able to piece together support for Michael, which allowed the family to stay a two-income family. It was a patchwork, but it was a patchwork that worked because people wanted to help.”
Later in the podcast episode Alice shares, “At 29, Michael had the opportunity to move out of [his parents] home because of a conversation 4 -5 years earlier when I was searching for support for Michael.”
Alice shares, “You don’t know what resources are available to you until you ask. “
Resources: