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Empowering people with disabilities to live an incredible ordinary life.
Episodes
Tuesday Oct 10, 2017
Tuesday Oct 10, 2017
Siblings supporting their brother's and sister's on friendships, dating, and dreaming big, with Melissa Janson
Today, we are kicking off our second mini-series on the podcast, and over the next few months we are going to focusing in on siblings. Siblings are often forgotten about in the family equation when there is a disability in the family, yet they can play such an important role. In this mini-series, we are going to be trying to answer a couple of questions about siblings; ‘What role can siblings play in their brother’s and sister’s lives?’, and ‘What support and resources are available for siblings?’.
If the sibling topic is one that interests you, you can listen to Episode #009 with Helen Rieswhere Helen shares her story and we have an important discussion about starting a conversation with your family about the role you want to play as a sibling. There are often so many assumptions about the roles family members are going to play. These assumptions are not always accurate and can lead to breakdowns, which is why it is so important to discuss the roles each family member wants to play. You might be surprised in how involved your family members want to be!
To kick off the mini-series on siblings, we have guest Melissa Janson on the show. Melissa works professionally in the disability sector, and is the sister to Yaniv, whom has a disability. Melissa and I discuss the role that we can play to support our brothers and sisters. We have a great conversation about friendships, dating, and dreaming big.
Melissa’s Story
Melissa (now 28) was born in Israel and moved to New Zealand with her family in 2000. Her younger brother, Yaniv (now 25), was diagnosed with aspergers when they arrived in New Zealand. Melissa and Yaniv went to the same main stream school where Yaniv was bullied, and this was frustrating to Melissa. People couldn’t see Yaniv’s gift and skills like Melissa could.
Melissa explains, “People with aspergers can struggle to pick up social ques. It doesn’t come naturally to Yaniv to come up to someone and start a conversation, and sarcasm and humor is hard.” However, Melissa goes on to explain that Yaniv is quite funny!
Melissa works professionally in the disability sector for an anthroposophical service provider that is grounded in the theories of Rudolph Steiner which takes a holistic view of the person; spiritually, emotionally, and physically.
Melissa’s family is starting to think about what the future looks like, as a family.
Building Relationships
Melissa is very close with Yaniv. Yaniv wants to know what is happening in Melissa’s life, and Melissa wants to know what is going on Yaniv’s life. Melissa shares, “Being close and connected is my focus.”
Melissa always tries to Include Yaniv in her social outings with friends. Melissa shared that, Yaniv is sometimes not sure why and can put up some resistance, but often comes along anyway.
On the podcast, I share the story of my conversation with the great Jean Vanier. Jean left me with this piece of advice, “Befriend people that have disabilities, and influence others to befriend people with disabilities.” Melissa is playing this important role for her brother.
On the podcast, Melissa shares the story of her brother’s love interest, and how she played a facilitator role to bridge the social gaps for her brother and his date. (It is a fun story, and worth a listen).
The Power of ‘Why not?’
Melissa shares, “Aiming high is something we really have to get used to doing, because I think there’s that whole bigotry of low expectations in the disability sector. As siblings, we can support by asking ‘Why not?’.
Yaniv is a painter and has a great career as a creator. He has published 4 books, and he has sold 160 paintings. Melissa shares, “People aren’t seeing him for his disability any more, they are seeing him as an artist. My other brother and I always feel like we are chasing Yaniv.”
Melissa shares, “We need to be looking at what risk can he take. I look at this positivity. From a relationship perspective when talking with my mom she didn’t think it is possible for him to have a relationship, and I responded, why not?... he is totally capable. And if he wasn’t we would facilitate that.”
Melissa also shares this risk-taking mindset from a career standpoint, “There is a lot of risk and uncertainty in the option of trying something first and learning the skills afterward. We are forced to figure it out when we are in the situation. There is risk here, but there is also a lot of growth that can happen.” On the podcast, Melissa shares the story of Abdul-Karim Bouchafaa and how his growth has taken off by following his passion and creating his career as a Motivational non-speaker.
Melissa advises siblings to stay connected with their sibling, read up, listen to podcasts, and gather success stories to overcome adversity in your family. Also, she suggests we look out for what your sibling is really passionate about, and to help them ride that wave and pursue that as a career. I am grateful for Melissa joining me on the podcast to share her story and insights as a sibling!
Thank you for reading to today's blog! If you liked this episode and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Connect with Melissa
Facebook: Melissa Janson (NZ)
Email: melissajanson22@gmail.com
Yaniv’s website: http://www.yanivjanson.com/
Abdul-Karim Bouchafaa Motivational Non - Speaker: Watch Video
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Oct 03, 2017
Tuesday Oct 03, 2017
Jessica and I discuss her approach to helping families create a home, lessons learned from the Be At Home Creative Housing Supports project , innovative housing solutions, overcoming barriers to housing, as well as some great resources.
This week’s guest on the Empowering Ability Podcast/ Blog is 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.
A New Mindset
An article in the Bridges to Belonging 2016-2017 Annual Report written by John Lord shares, the flipped assumptions of the Be At Home Housing Supports Project.
“In reflecting on the roots of this initiative, Cameron Dearlove, executive director of Bridges to Belonging, noted how important it was to engage in “upside down thinking,” where we assume that something is the case and build reality around that. We wondered, says Cameron, “if it might be possible to flip the assumptions about housing and people with developmental disabilities. Traditionally, we have assumed that people could not live away from parents until they were ‘ready’ or until all resources were in place.” The Be At Home Project assumes that people can live in the community and that they have the resources and readiness to make it happen.”
Jessica takes a person directed approach and works directly with families in the Waterloo Region helping them to take this new mindset, and facilitates the family through creating their vision for housing.
Some of the questions asked in the visioning process are:
What type of home do you want (Apartment, single dwelling, etc.)
Where do you want to live?
What is the timeline?
Who do you want to live with?
What is budget?
What supports do you need?
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 what what the next steps are to bring the plan to life!
Lessons Learned with The Be At Home Creative Housing Supports Project
Over the last year, Jessica has helped; 7 people to find housing, 12 people to actively work on their housing plan, and 12 people to create a plan and put it on pause to resume at a later time that is right for the family.
Jessica shares the biggest challenges and successes families have experienced so far:
The Challenges
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Affordability of housing and supports
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Long waitlists for subsidized housing
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Long waitlists for supports
The Successes
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Tapping into the network of family and friends to access community resources.
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Creatively reducing costs with roommates.
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Testing out the housing plan with a trial run, for example, living in your desired housing with your desired support for a short time period on a rental basis. (More on this below)
Innovative Housing Ideas
Testing Before Implementing: Jessica shares that by testing out your plan before implementing is a great way for people to understand what it is going to be like living on their own. It can help you understand what might work, and what might not work and you can adjust your plan accordingly. In Waterloo Region, there are programs that exist, such as Testing the Waters, and Trying It On For Size, that allow people to do exactly what their names suggest.
Going to where community resources are richest: Jessica supported a couple that moved into a co-operative community where there was already a great community established. In a co-operative, there is often a culture established where the members are expected to contribute back to the community. You can find your own way to contribute to the community, whether that is gardening, group potlucks, helping a neighbour, or game nights. Anyone can apply to be a co-op through the community housing list. There is an interview and application process to see if that is a good fit for you. Jessica shares that, another place where there is often an intentional community is Eco-villages, which are becoming more abundant around the world.
Overcoming Barriers
On the podcast, Jessica and I discuss how to overcome some of the most common barriers to a person with a developmental disability moving out on their own, including letting go and personal safety.
I thank Jessica for coming onto the podcast and sharing her valuable experience and insights to help people with developmental disabilities find a home of their own.
This wraps up the mini-series on housing. If you would like to listen/ read about the other housing episodes you can find them here.
I want to hear from you! Tell me what would be helpful for you to create a home of your own, or to help others create a home of their own. Email me at eric@ericgoll.com with your thoughts, and I will be sure to reply.
Resources:
Contact Bridges to Belonging:
Bridges to Belonging Creative Housing Project: Click Here
Waterloo Region - Finding and Keeping a Home: Click Here
Lutherwood Housing Resources: Click Here
The Working Centre - Housing: Click Here
Waterloo Region Affordable Housing: Click Here
Tuesday Sep 26, 2017
Tuesday Sep 26, 2017
In this podcast, we discuss the most common question Brendon is asked by families, which is: 'How do I secure the future for my loved one with a disability?'
This week’s guest on the Empowering Ability podcast / blog is Brendon Pooran, Principal lawyer at Pooran Law in Toronto, Ontario. Brendon always had an interest in disability law, which stems from his life experience as he grew up with siblings that have a disability. Brendon and his team provide advice to families and agencies in the disability sector in Ontario, British Columbia and Newfoundland.
On the podcast, we also discuss consent and capacity. What is consent and capacity? And, what do we need to know about it. You can take a listen to the podcast to hear more on consent and capacity.
Securing the Future
Estate planning is the process that Brendon guides families through to create a plan for security for loved ones with a disability. We discuss both financial and relationship considerations when creating an estate plan. A major objective is to ensure that government benefits aren’t impacted by an estate.
Starting the Estate Planning Process
Paraphrasing from the podcast Brendon shares the questions he works through with families:
1) What are your objectives? If you have a loved one with a disability, what does their life look like now? What does it look like in the future?
2) What are the expenses and sources of income? What do they look like now, and what will they look like in the future?
3) Who are the people involved? There are several roles that you need to consider in your estate plan, including; an executor for estate, trustees for any trust that are set up, attorneys in power of attorney documents, and guardians that may need to be considered. *Note: The people you assign to these roles should be trustworthy (they will have access to your estate with very little oversight), conscientious and task oriented with the ability to meet deadlines, and it is a nice to have if they have a relationship with your beneficiaries.
The Will
The will is the foundational pillar of the estate plan. It will incorporate tax strategies, roles, trusts and strategies that are developed for financial security for beneficiaries of the will. Many people do not have wills, and do not understand the impacts of not having a will in place. 40% of Brendon's clients are people applying to become the estate trustee because a will was not in place. There is a cost associated with this application, as well as taxes that need to be paid that could have been avoided. Also, beneficiaries can lose social assistance benefits (ex. ODSP $1200/mo – dental, drugs, vision), if an inheritance increases the beneficiary’s asset base to exceed $40,000 (in Ontario).
The cost to create a will and estate plan ranges based on where you live and your situation, but typically it will cost you approximately $2,500 to set up your will.
Trusts
There are several different types of trusts, and Brendon provides us with an overview of the Trusts he frequently recommends in his practice:
1) Henson Trust: The Henson Trust is a discretionary trust, which means the trustee has full authority to make decisions on the trust. This trust is not considered an asset by the Ontario Government for social assistance program purposes, and will not impact ODSP. There is also no limit to the amount of money that the trust can hold. You will also want to make sure that it qualifies as a disability trust, which helps to reduce the taxes that might be generated by the trust.
2) Lifetime Benefit Trust: This trust is typically recommended for people that have RRSPs or RRIFs in place so that these benefits can be rolled over to the beneficiary without any tax implications. A life time trust can also be used to hold assets, such as a home or property.
3) Inheritance Trust: With this trust, you can leave instructions for the trustee to disperse the trust funds as you wish. This trust is limited to $100,000, and Brendon doesn’t see this trust being used as frequently as the other two above.
Trusts are mostly written instructions left in the will, and are created when the will is executed, these are called testamentary trusts. Some families create living trusts that become active right away, called inter vivos trusts. These living trusts can be used to hold property for the beneficiaries, and the living trust can be referenced in other family member's wills so that several different trusts don’t have to be created and managed.
On the podcast, Brendon shares the story of a family that increased their estate value by over $200,000 through tax planning and trust strategies.
Brendon and I also discuss power of attorney, if a person with a disability should have a will, ODSP, RRSPs, and life insurance policies on the podcast. Take a listen if you are interested in these topics!
I strongly recommend that you consult with a professional lawyer, tax accountant, and financial planner when creating your estate plan.
I thank Brendon for coming on the podcast and sharing his important insights on securing the future for our loved ones!
Love & Respect,
Eric
Resources:
Website: Pooranlaw.com
Inspiring possibilities estate planning guide: www.planinspiringpossibilities.com
Partners for planning resources: 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 Sep 20, 2017
Wednesday Sep 20, 2017
Bill Hiltz shares his story of how he was mistreated and caged in an institution as a toddler, freed by loving people, and how he has grown into a leader advocating for positive change for people with disabilities.
In this podcast episode, I had the pleasure of interviewing ‘Team Bill’, including; Bill Hiltz, and his supporters Joyce Balaz and Arn Row. Bill is a disability advocate that is promoting positive change in the Ontario political arena by sharing what it is like to live in his shoes. Bill is non-verbal, and he is impacted by an uncontrolled seizure disorder that can rule his life.
Bill Hiltz’s Story
Paraphrasing from the Podcast Joyce and Arn share:
Joyce: “When Bill was born there were complications with the birth that led to Bill’s seizures. At the time, his family didn’t have the resources and supports to provide for Bill, and Bill went into foster care system at 1.5 years old. Bill went into a number of foster families, in and out of the hospital, and then ended up at Christopher Robin, which was an institution in Ajax, Ontario. The institution was closing when Bill was 8 years old, and a family who had already adopted another child came back to the institution and adopted Bill.
Arn: “It is important to share Bills experience in that institution. Bill’s time was mostly spent in a crib cage, which had 4 sides and a top on it. Bill wore a helmet because he was banging his head on the bars, which was Bill’s way of trying to tell whoever would listen that he didn’t want to be in there.”
Joyce: “When he was taken in by the family after the institution they just loved him to death, and he lived with them for 12 years (until he was 19). The father providing most of the care fell ill, as well the 3 (other) boys of the family where moving out of the home – so it was a time for transition (for Bill).”
Joyce, who was Bills educational assistant (EA) at school since the age of 13, heard that Bill was looking for a new home. Bill and Joyce gave living together a couple of trial runs and it went well. Bill then moved in with Joyce. Since then they have blazed a trail with their advocacy work, and growing and learning together.
(Left to right: Arn Row, Bill Hiltz, Joyce Balaz)
Start with the Assumption of Capability
When you see Bill you wouldn’t expect him to have done the things that he has done in his life. When Bill was in the institution as a toddler he was caged because he was misunderstood. Assumptions where made about his capability, or should I say incapability. Bill was shown love and respect by the family that adopted him, and since by Joyce, Arn, and many others. Bill’s story highlights the dangers of starting with the assumption that a person isn’t capable.
By assuming a person is NOT capable we keep them caged and deny the opportunity to live their best life. When we start with the assumption that a person IS capable, we give that person the opportunity to grow and live their best possible life.
What is the worst thing that can happen if we start with the assumption that someone is capable? They fail, and hopefully learn so they can be more successful in their next attempt. (Yes, it is important that we consider holding people capable in an environment that is safe for them so that if they do fail they have the opportunity to get back up and try again.)
Always start by holding people capable, disability or not!
Bill taught me this invaluable lesson. When I first met Bill I assumed that Bill wasn’t capable of having a conversation with me – and boy did he prove me wrong! Thank you, Bill.
We discuss holding people capable in more depth on the podcast.
Our Fear of ‘Different’
It took me well over 5 days of being around Bill before I actually engaged in a conversation with him. What took me so long to talk with Bill?
It was my own fear.
I judged Bill because I had perceived Bill as being different than me. This self-acknowledgement hit me square between the eyes. My sister has a disability, and I have several friends that have disabilities, and this fear was still present inside of me. What does this fear look like for others that have not had contact with people with visible disabilities like I have?
Joyce had a similar experience when first meeting Bill as an educational assistant (EA). Joyce shares, “…. I told the teacher that I didn’t want to work with Bill because I didn’t know how to work with him. The first time that I told Bill this he was mad, and didn’t talk to me for two weeks. Now that he has heard this story a number of times it has given him an opportunity to think about how other people view him.”
How is your fear holding you back from interacting with a person that you perceive as different? It could be a person with a disability, a person from a different ethnic background, or a different religion.
How Do We Best Communicate with Bill (and others that have a developmental disability):
In this episode, we discuss how it can be difficult to enter into a conversation with a person when there isn’t a response or acknowledgement back from the other person. This doesn’t mean that that person isn’t interested in engaging with you. Here are 3 tips we provide on the podcast to communicate with people that have a developmental disability:
1) Be patient
2) Be sincere
3) Ask how to best communicate with the person
Bill has shared, we need to learn how to slow down. A fast pace verbal world isn’t the world that Bill lives in. Bill gives others the gift by providing them to slow down and operate at his frequency.
Bill Hiltz’s Advocacy Work
Bill’s seizures have such a severe impact on his energy that he has forgone his recreational activities, such as horseback riding, and uses his energy to solely focus on his advocacy work.
Bill envisions a world where we are seen as we who we are, not for what is different. Bill shares, “People have been excluded for so long, which means people see the difference first. When people we are truly included others get to experience who we really are.”
Bill has started the “Walk a Mile in My Shoe” project (seen in the blog cover photo) where he invites people to acquire a disability, (for example loss of sight, hearing, or physical ability), and walk beside him to experience what it is like to live with a disability for a short amount of time. Bill’s theory is that the experience will lead to understanding, which will lead to change.
You can support Bill by visiting his website, or participating in/ sponsoring one of his events. The proceeds go to the organization Reach for the Rainbow, which provided Bill with camp experiences as he grew up.
Bill shares his wisdom with us in his powerful poem, titled 'Understanding People'
UNDERSTANDING PEOPLE
A SET OF STANDARDS BY WHICH TO JUDGE
TO THEIR FRIENDS, THEY GIVE A NUDGE
WHEN THEY SEE ME COME THEIR WAY,
THEY STOP AND WALK THE OTHER WAY
OR EVEN WORSE, THEY STOP AND STARE
AS IF I'M STUPID AND UNAWARE.
IF ONLY THEY COULD KNOW, THAT I CARE;
HOW PEOPLE VIEW ME--IT'S JUST NOT FAIR!
I FEEL THE VERY SAME AS OTHERS DO,
THEY SHOULD TRY AND WALK IN MY SHOE.
LIFE'S NOT EASY, WHEN THE BODY THAT YOU OWN
WAS GIVEN TO YOU BROKEN-DOWN.
THEY MAY BE MEAN; THEY MAY BE CRUEL; THEY MAY BE BAD;
BUT MOST OF ALL...THEY JUST DON'T UNDERSTAND.
WITH SOME TIME AND SPECIAL GUIDANCE;
WE CAN HAVE A GREAT ALLIANCE.
FOR AN HOUR, OR FOR A DAY;
WE ALL NEED FRIENDS ALONG THE WAY.
SO WHEN YOU SEE ME COME ALONG
TRY NOT TO FOCUS ON WHAT IS WRONG;
I AM A PERSON JUST LIKE YOU,
WHO NEEDS AND DESERVES A GOOD FRIEND TOO.
JUST WALK BESIDE ME STRAIGHT AND TALL
AND BE THE FRIEND THAT I CAN CALL
WHEN I AM LONELY AND AFRAID.
JUST REMEMBER WHAT I'VE SAID:
ALL YOU NEED IS TO UNDERSTAND;
DO NOT JUDGE JUST TAKE MY HAND.
- Bill Hiltz
1998
I thank Bill, Joyce, and Arn for coming on the podcast to share their story and insights!
Love & Respect,
Eric
Resources:
Walk a Mile in my Shoe: Video: Click Here
Walk a Mile in my Shoe Website: www.inmyshoe.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Sep 12, 2017
Tuesday Sep 12, 2017
Parenting author, Ann Douglas, discusses parenting a child with a mental illness /disability, and practicing self-care so we are available as care-givers.
This week on the podcast/ blog I welcome Ann Douglas, author of numerous books on parenting with over half a million copies sold. Ann and I discuss her newest book titled “Parenting Through the Storm”, which is a guide to parenting a child who is struggling with Mental health, neuro-developmental, or behavioural challenges. We also focus in on self-care for parents (and supporters), and discuss why it is important, tips to practice self-care, and how to create the space for yourself.
Parenting Through the Storm
In the writing of this book, Ann interviewed 50 other parents that have been through it, and she found many common threads through all of their experiences. She took her research findings as well as her own personal experiences and wrote this book to provide practical advice for parents.
On the podcast Ann shares, “I wrote this book because all 4 of my kids had some sort of challenge, and at the time I thought ‘ I must be doing it wrong.’ I desperately needed to know that things could get better – and they have! Parents are resilient, children are resilient, and families are resilient. It is possible to go through all these storms together and to come out stronger and more connected on the other side”
You can learn more about the book at www.anndouglas.net.
Is There a Right Way to Parenting?
On the podcast Ann shares, “There is a right way for your family, and you figure that out over time. Each of my 4 kids needed a different approach to parenting. It isn’t cookie cutter, because everyone is different. There were times that 1 of our kids needed ¾ of the parenting energy, which left only tiny little slices for the rest of the kids…. I felt guilty about that… but there are times when our attention had to shift around.”
What is Self-Care? and Why is it Important?
On the podcast Ann shares, “Sometimes people think about self-care as self-indulgence, for example, sitting on the couch eating bonbons. But, that isn’t how it usually plays out. Mainly it is about taking good care of yourself so that you have something left to give to the family member who needs you. When you are parenting a child, who is struggling you can’t afford to get completely burnt out and depleted. Without you your child will be lost.”
“Even though it can feel selfish I would argue it isn’t selfish, it is self-preservation.”
Practicing Self-Care
We are all unique in our own ways, and the best way for us to practice self-care is unique to us. We all have a self-care tool box filled with tools to refill our energy tanks, sometimes we just aren’t opening the toolbox frequently enough.
Ann provides 3 tips to practicing great self-care.
1) Physical Activity – Move your body in a way that is right for you. For Ann, this means taking 2 walks per day. (For me, this means breaking a sweat every morning by running or biking. Physical activity supports our physical health, and also enhances our brain function.)
2) Social Support – Ann shares, “It takes a village to raise a child, and I would argue it takes a village to support the parents that are supporting that child. Accept help when it is offered, and ask for help when you need it.” When you have help use the space to practice good self-care to fill your energy tank.
3) A Creative Outlet – Ann Shares, “Creative outlets take the focus away from worries, and brings our focus into that activity. There is research that shows that when our brain is actively engaged in a different activity (a hobby, etc.) it leaves us feeling more refreshed vs. vegging out on the couch.”
Tips For Creating the Space for Self-Care:
> Let others help you, and take a slice of that time to do something kind for yourself.
> Ask for help. It is a great opportunity that you are giving someone else when you ask them to help – lose the guilt about that.
> If we need to find the time then look at where you are wasting the time. For how many hours are you watching TV, or on your phone?
> Don’t be seduced into the that zoning out, find a creative activity.
> Be intentional about creating the space in your day for self-care. (I block off the first 2 hours of my day to break a sweat, read, meditate)
Ann shares her personal story of falling into bad habits that resulted in poor sleep, anxiety, and gaining 100 lbs, then breaking the cycle, building positive self-care habits, and loosing those 100 lbs.
I thank Ann for coming on the podcast/ blog to share the what she has learned on her parenting journey, and for sharing her wealth of knowledge on self-care to help us live happy and healthy lives.
If you enjoyed this blog/ podcast Subscribe to our mailing list and get a new episode every week!
Love & Respect,
Eric
Resources:
Learn more about Ann's Books: Click Here
Contact Ann Douglas on Twitter: @anndouglas
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 Sep 06, 2017
Wednesday Sep 06, 2017
In this week’s podcast/ blog our featured guest is Jeff Dobbin, Executive Director of Partners for Planning (P4P) in Toronto Ontario. Jeff and I discuss the idea of creating a culture of possibility for people with disabilities, why planning and intentionality is so important, the three most important building blocks to think about when getting started with planning, and the resources that P4P provides to help you create an incredible ordinary life.
P4P, an affiliate of PLAN BC and a member of the Ontario Independent Facilitation Network (OIFN), is a family driven organization that started in 2009 to create resources and community supports for families caring for a relative with a disability. They developed the P4P Planning Network, which is an online resource that was created for families across Ontario, but is accessed by people across the world!
The online tool provides valuable information on six key areas; life planning, building relationships, work and contribution, legal and financial planning (RDSP), creating a home of your own, and supports.
P4P is also very well known for the webcasts that they produce on these six areas where they engage in thoughtful discussions with experts, and take live questions from the audience. They host approximately 40 free webinars per year and you can check out their upcoming webinars on the planning network home page.
The P4P website also hosts a doc zone – short documentaries profiling short video stories to help us learn what is possible and a professional services directory that can help you find professionals with disability expertise. P4P also published the book titled ‘Safe and Secure’, by Al Etmanski. They are currently updating Safe & Secure and it will be available on the Planning Network this fall.
All resources on the Planning Network are available at no cost.
The Culture of Possibility:
On the podcast, Jeff shares, “If people that haven’t had a lot of opportunity to be involved in their community - for example (they have been) in segregated schools, or a congregated program the whole idea of participating fully as a citizen is an extreme idea for many people. So, one of the things we do at P4P is share stories of hope and possibility to help people realize that people with disabilities can contribute and live full and unique lives.” (These stories are told on the webcasts, and in the doc zone.)
Planning Enables Possibility:
On the podcast Jeff shares, “What many families will tell us is that very little happens unless their family is intentionally involved in directing things. I have 3 kids, and they have more or less figured out their own lives – they have their own jobs, and financial resources and they have moved out, but I am fully aware that doesn’t always happen when there is a disability involved. Also, with all the waitlists in Ontario you can’t sit back and wait for the government to provide all the supports you need. We also encourage families to be proactive because of the individualized funding that has become more available, and because of a move toward community based approaches. Families have an opportunity to create incredible things around work, contribution, and relationships.”
3 Things to Consider When Starting Your Planning:
On the Podcast Jeff shares:
1) Create a Vision. Think about the life you would like to help your son or daughter create. What is important? What is possible? Don’t be afraid to dream.
2) Building Relationships. Who will be there for your sons and daughters when you can no longer care for them? Don’t be afraid to invite others into your life and your son’s and daughter’s life. (Eric: Building relationships has had a huge impact on my sister’s life, but also my mother’s life – as she feels more supported. This is something that an independent facilitator or coach can support with. To learn more about independent facilitation you can listen to episode 3, ‘Independent Facilitation and Support Circles Enriching lives’, and also check out the Ontario Independent Facilitator Network (OIFN) website.
3) Financial Resources. Access the financial resources that are available to you to support making your vision a reality. In Canada, you can open an RDSP if you are eligible for the disability tax credit (DTC). For example, if you open an RDSP at the age of 5, and you qualify for grants and bonds fully, at age 35 you would have a $350,000 asset and over a lifetime $1,000,000 asset. This type of asset is a life changer. Check out the P4P learning center to learn more about the RDSP.
I thank Jeff for coming on the podcast/ blog to share the message of creating a culture of possibility for people with disabilities, and for educating us on the resources the P4P team has created to help us live into the vision we create for ourselves and our loved ones.
If you enjoyed this blog/ podcast Subscribe to our mailing list and get a new episode every week!
Love & Respect,
Eric
Resources:
Partner's for Planning (P4P) Website: Click Here
Ontario Independent Facilitation Network (OIFN) Website: Click Here
The Art of Belonging (Ted Talks Inspired): Click Here
Contact Jeff Dobbin: jdobbin@p4p.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tuesday Aug 29, 2017
Tuesday Aug 29, 2017
We welcome Janet Klees back to the podcast/ blog this week discuss building natural relationships, bio medical approaches to well-being, and the different approach her organization, Durham Association for Family Respite Services, takes to supporting families. Janet has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. She is the author of three books which are directly rooted in her experience with the Deohaeko Family Support Network, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world to present the unique options of this family group.
So how is Durham Association for Family Respite Services different? Janet explains that often a family’s first question is: “Can I pay you to do that for me?”. Janet’s answer is: “Well no. But I will teach you, and give you practical supports along the way.” The organization believes so strongly in the approach of empowering individuals and families to make their own choices and keeping control of their lives that they are changing their name to the Durham Association for Family Resources and Supports.
The organization started 35 years ago as a family respite organization, and has since evolved to focus on full life planning, and helping families to think about what a good life is. The organization is grounded in Social Role Valorization (SRV) methodologies and some of the services they offer are listed here. I am listing these services for you because the organization frequently hosts free workshops that you can attend, and they are open to having a conversation with you – even if you are from outside of the Durham Region.
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Facilitation and planning; helping people imagine what a good life is, creating a plan and putting the plan into action.
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Support recruitment; helping people recruit good support people, and providing a minimum a one day training to make sure they understand a SRV style of support.
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Administrative support; templates and forms to make hiring support easier.
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Free Training; workshops for families and supporters to learn what has worked to help people with disabilities create a good life.
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Family to family learning; families get together to talk about themes, such as housing and bio medical (non-medication) approaches.
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Brokering and financial supports; helping families by doing the administrative functions with individual funding dollars.
Building Context for Relationships
BCR is a Strategy that was figured out while working with the families of Deohaeko Family Support Network. The parents were very clear that there was need to have relationships in their son’s and daughter’s lives. The group looked at what they were doing right, instead of what they were doing wrong, and this pattern emerged. What they noticed is that relationships had evolved between people with a disability, and people that do not have a (visible) disability.
The Deohaeko Family Support Network had taken a social role valorization (SRV) approach. Janet provides an overview of SRV:
“The SRV framework says that human beings are very judgmental by nature. We make quick judgements about whether you are like me, or you are weird and different. We can take this human tendency and use it for the good by developing positive roles, such as the Blue Jays fan, the dog walker, etc.. This strategy has helped people create positive roles, and the roles are like a glue. In the role you end up meeting other people who see you in a positive way, and those people end up being open to a different kind relationship in your life. We don’t group people together – when we group people with a disability all (other) people see is the disability. They don’t see the person for who they are and the positive roles they have. Often, families haven’t thought about their son or daughter as a contributing member. We haven’t thought about what son or daughter’s job might be.”
Janet provides a larger overview of SRV in this blog.
BCR: A 4-Part Strategy to Create Situations Were Relationships Are More Likely to Arise.
Janet explains:
1) Find ordinary places where people share your interest. Follow the interests of the person and think about where other people are that are interested in your interest. For example, if your interest is dogs other people interested in dogs are at: the dog park, dog training, walking dogs, dog clubs, stray dog associations, etc.. We are looking for typical and ordinary places in community, not places segregated for people with a disability.
2) Go to the same place frequently. To build relationships you need to be among the same people regularly. Pick one place, use your 1 to 1 support to support, and be there often (ex. Once per week).
3) Find a way to contribute. You want people to have a role in those places in community. So often people with a disability are just spectators. If you look at a music festival most are just spectators, but there are so many opportunities to have a role as a volunteer (ex. free samples, filling water bottles, assistant to the golf cart driver). This gives the person a role, and makes relationship easier.
4) Other people have to be present. Supporters are a bridge to relationships with others, and they need to play a role in facilitating relationships. The paid support person can be looked at as the friend. They are being paid and likely will not be there for that person’s entire life.
BCR In Action:
On the podcast Janet shares several stories of how people have used the BCR strategy to build relationships. You can listen to the podcast to hear them all.
Paraphrasing from the podcast, Janet shares Johnathan’s story:
“Johnathan has a small shredding business that he takes it into work places. He was working at the local police station, and really enjoyed it. He felt like he was important, and he felt like he belonged. That police station was closed down, but hey really valued Johnathan so he was invited to the big regional police station to continue his role. After 3 weeks at the regional police station Johnathan said he didn’t want to go anymore. They had put him in a backroom alone to do his shredding, and he didn’t have his relationships anymore. The shredding business was just a vehicle for relationships. When the relationships weren’t there, he no longer wanted to work. They talked to the police station, and Johnathan moved to a room where he was with people and he enjoyed his job again – because of the relationships.”
Bio- Medical (non-medical) Approaches
In a recent study, led by Yona Lunsky, psychologist at Centre for Addiction and Mental Healthfound that thousands of people with down syndrome, autism and other developmental disabilities are being prescribed anti-psychotic medication despite a lack of evidence that the drugs actually help them. (Reference: Toronto Star)
This highlights the importance of thinking about bio-medical approaches to well-being for people with disabilities. The Durham Association for Family Respite Services has started a family group to discuss this, and they are learning about the impacts of diet, exercise, and mindfulness (of supporters) as alternatives to medication. In my opinion, these are common sense approaches that can be explored at little cost that can get down to the root cause of symptoms or behaviors that a person is experiencing. Peter Marks of Conscious Care focuses in this area, and you can find additional resources on his website. We are hoping to have Peter on an upcoming episode to learn more about these approaches.
I thank Janet for coming onto the podcast and sharing her experience in helping people with disabilities to build relationships, and for getting us thinking about non-medical approaches to well-being.
If you enjoyed this blog/ podcast Subscribe to our mailing list and get a new episode every week!
Love & Respect,
Eric
Resources:
Purchase These Books to Learn More Lesson's from Janet Klees:
"We come bearing gifts" by Janet Klees
"Our Presence has roots" by Janet Klees
Free learning events In Durham Region: Click Here
Durham Association for Family Respite Services Monthly newsletter: Click Here
Housing website: imagininghome.ca
Peter Marks: Conscious Care
Contact Janet Klees: janet@legacies.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Aug 22, 2017
Tuesday Aug 22, 2017
This week’s guest on Empowering Ability Podcast and Blog is Chris Woodhead, Group Director of Housing and Business Development for Dimensions UK. We talk about housing in the UK, and the approach Dimensions UK has for supporting people with learning disabilities and autism spectrum disorder (ASD) to find and create a home in Part 5/6 of the mini-series on housing for people with a disability.
Chris Woodhead has twenty years of experience in the housing, care and charity sectors in the UK. In 2016, Chris joined Dimensions UK to support the organization on their mission to provide high quality personalized support for people with learning disabilities and autism, helping them to be actively engaged with, and contribute to, their communities. Dimensions UK started about 30 years ago when institutions were closing and they currently support approximately 5,000 people across England and Whales. The approach to support Dimensions UK takes is to give people choice and control over their lives. For Dimensions UK it is about delivering personalized services by understanding the client’s needs so that they can deliver just enough support for them to achieve in their lives.
Housing in the UK
On the podcast Chris Woodhead shares:
The UK is a small and old country where land is at an absolute premium, this makes housing challenging. The UK culture is founded upon home ownership, whereas in the rest of Europe, rental is a more accepted norm. However, home ownership is difficult to achieve for most because housing prices are so high.
3 Main Ways to Have a Home:
1) Buy. For people that face a challenge to get into the employment market (many people with a disability) it is extremely difficult to realistically purchase a property. It is becoming an exclusive market that favors the wealthy.
2) Rent. The rental market is also prosperous in the UK and is becoming harder to access. It is incredibly difficult to find a rental in London – there is an exclusive barrier unless you have high income.
3) The Social and Affordable Rented Market. This market was created for people that were on lower incomes. This worked really well from the 2nd world war until the mid 80’s when there was a housing build program, and there were a lot of solutions for people who needed them. The rates at which these units become available have slowed, people are having to wait an awful long time for housing. Demand far outstrips supply.
People with low income can apply for housing benefits (being replaced by a system called Universal credit), which is a type of rental subsidy. However, rentals are becoming increasingly difficult to find with the amount of funding provided. In some cases, people have had to move to different city were rents are cheaper, which is taking people out of the city they call home.
Summary: Expensive to buy, increasingly expensive to rent in private market, increasing demands on social affordable housing.
Dimensions Approach to Housing
Paraphrased from the Podcast Chris Woodhead 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.
Dimensions UK's 3 Approaches to Housing
1) Build new housing at the right price. We need to create properties that have an affordable rent so that people can use the rental subsidy to pay for housing. We need to find the right places to build, at the right place so people can afford the rents.
2) Remodel, refurbish or knock down and rebuild existing housing (to give people their own front door).
3) Signposting (guiding) people into the right accommodation for them. This can be with registered providers (public sector organizations that provide affordable housing), or into the private rental sector (called brokerage).
How do people work with you?
Very few people self-refer to Dimensions, this just isn’t how the system works in the UK. Most people are referred by the National Health Service (NHS) social services or a professional service practitioner. If living an independent life is right for an individual then they would likely be referred into us.
How do you find the right housing?
Contact and conversation between the individual, the family, friends and the social workers/ professionals that understand that person. ‘Referral to residence’ is my pet term for it.
1) Understand the person: what do they want to achieve? What facilities do they need nearby? What modifications to the property would be needed (sensory experience, items of safety)?, What location (near family and friends)?, What social activities do they want to be involved in? The individual, family, and friends are very involved in the process.
2) Work out what is important for that person to achieve and help them with a support package that considers the 8 domains in the Activate model. (See a description of Dimensions UK Activate Model at the end of the blog.)
3) The Dimensions Advisors look for accommodation (termed Brokerage). Dimensions has been nominated for awards several times for their Brokerage Service, learn more here.
Paraphrasing from the Podcast Chris shares this important insight:
“When an individual’s wishes are reflected, it is the best chance for a successful transition is when we get it right the first time. I have been around long enough in the social care sector to see when support has failed, and it would be twice as hard the second time around. Confidence of the family plummets, and the fear and confidence of the person being supported is damaged too. Take the time, and put the thought into getting it right the first time. This can take a year to get this right, which can seem like a long time, but it isn’t if you compare to the experience of people living in an institution.”
The New Activate Model
This is a new researched based model that was piloted with 24 homes of 1-8 people over a 2-year period. The model focuses on 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
The two unexpected outcomes from the activate model research were 1) a 60% reduction in challenging behaviour, and 2) an increase in satisfaction for support staff. If you would like to learn more about the research, and watch the short videos visit the Dimensions UK website.
I thank Chris for coming onto the podcast and sharing his experience in housing, giving us an overview of the housing landscape in the UK, and for sharing lessons learned that can help us to empower people with disabilities to create a home of their own.
I’ve created a FREE workbook to help you create your vision of the best housing solution for you and to take the first steps toward implementing this solution. Click Here to download the free workbook. Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribe to the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Dimensions UK Website: https://www.dimensions-uk.org/
Contact Dimensions UK: Click Here
Activate Model Research: 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 Aug 16, 2017
Wednesday Aug 16, 2017
In my conversations with people with disabilities, their families, and supporters one of the biggest dreams they have is social acceptance. This blog and podcast gives steps we can take to start creating a more inclusive world for people with disabilities.
We are talking stigma in part 2 of our interview with Jackie Goldstein. Jackie is an observer, educator, author and speaker on community care support models. Jackie's book, 'Voices of Hope For Mental Illness; Not Against, With', shares the stories of many community care models across the world, and she also discusses Dr. Patrick Corrigan’s work on breaking down stigmas.
Miriam-Webster Dictionary defines stigma as: a set of negative and often unfair beliefs that a society or group of people have about something. Paraphrasing from the podcast Jackie Goldstein shares, “Stigmas develop out of stereotypes. When people think of mental illness (and disability) we are afraid, and we think people with a mental illness will be a problem to take care of. We all develop stigma about people’s skin colour, age, and country of origin, etc. What we do is we take limited information, and we apply it to an entire group. This isn’t fair to the individual.”
Patrick Corrigan US based Author and advocate for people with mental illness, has conducted research studies on stigma and found that there are three different approaches we can take to break down stigma. Patrick Corrigan focuses on mental illness, but I believe there is a large overlap with disabilities in general.
The 3 Common Weapons to Break Stigma:
1. Protest. Making people aware of the cause/ situation. Example: March and demonstrate in the street, or write a letter to the editor.
2. Education. Provide information so that people can make informed decisions. Example: Listen to a podcast or watch a video to learn about a cause or situation.
3. Contact. Interaction with a person that you hold that stigma against. Example: Have a conversation with a person that has a mental illness.
Effectiveness of These Weapons:
In a 2002 publication of World Psychiatry, Patrick Corrigan and Amy Watson shared these findings in the article titled, ‘Understanding the impact of stigma on people with mental illness’.
“Protest is a reactive strategy; it attempts to diminish negative attitudes about mental illness, but fails to promote more positive attitudes that are supported by facts. Education provides information so that the public can make more informed decisions about mental illness. This approach to changing stigma has been most thoroughly examined by investigators. Research, for example, has suggested that persons who evince a better understanding of mental illness are less likely to endorse stigma and discrimination (17,19,52). Hence, the strategic provision of information about mental illness seems to lessen negative stereotypes. Several studies have shown that participation in education programs on mental illness led to improved attitudes about persons with these problems (22,53-56). Education programs are effective for a wide variety of participants, including college undergraduates, graduate students, adolescents, community residents, and persons with mental illness. Stigma is further diminished when members of the general public meet persons with mental illness who are able to hold down jobs or live as good neighbors in the community. Research has shown an inverse relationship between having contact with a person with mental illness and endorsing psychiatric stigma (54,57). Hence, opportunities for the public to meet persons with severe mental illness may discount stigma. Interpersonal contact is further enhanced when the general public is able to regularly interact with people with mental illness as peers.”
These research findings highlight the importance of sharing our individual and family stories of disability to break down stigma. We can educate people about our disabilities through a blog, video, or story book. Or better yet, we can make contact with others and share our story in conversation. This creates a common understanding and builds connection. A story I've heard of a family that effectively broke down stigma for their daughter with a disability wrote a story book complete with pictures to share their daughter's journey with her classmates (she was in a regular classroom). The other kids in the class were so interested in the story they each started to take the book home to share the story with their parents. After learning the daughter’s story, the other kids and parents were no longer scared of the disability, and started to interact with her more.
Patrick Corrigan also writes about self-stigma and how it negatively impacts us. You can read more about self-stigma in this interview with Patrick Corrigan by Aisha Jamil: Q&A with Dr. Patrick Corrigan: Public Disclosure Promotes Empowerment and Reduces Self-Stigma
Jackie leaves us with a brilliant quote from the podcast, “When you are all doing the same thing people forget about the disability and it isn’t noticed.”
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Email Jackie: jlgoldst@samford.edu
Jackie's Book, 'Voices of Hope for Mental Illness: Not Against, With' Click Here
Q&A with Dr. Patrick Corrigan: Public Disclosure Promotes Empowerment and Reduces Self-Stigma: Click Here
Dr. Patrick Corrigan, World Psychiatry publication: ‘Understanding the impact of stigma on people with mental illness’
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Wednesday Aug 09, 2017
Wednesday Aug 09, 2017
This is the story of Michael Mainland’s incredible ordinary life. Michael is 38 years old, works at Boston Pizza, has his own house, lives with a roommate and volunteers regularly. What may come as a surprise to some is that Michael has a developmental disability that caused him to become non-verbal and reduced fine motor skills as he grew older.
Michael’s Story in Starting in High School:
I had the opportunity to interview Michael’s mother, Alice Mainland, to learn Michael’s story and to learn how Michael has created his ordinary life.
In the 2 months before Michael graduated from high school, Michael and his family realized they had a problem; there would be nothing for Michael once school ended. One of his parents would have to stay home to support Michael, and 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 and this allowed the family to stay a two-income family.
Alice shares, “You don’t know what resources are available to you until you ask. “
At 29, Michael had the opportunity to move out of home because of a conversation 4 -5 years earlier when Alice was searching for support for Michael.
Michael’s Life Today:
Michael’s family purchased a duplex where Michael lives with a roommate in one unit, and a supportive neighbor lives in the second unit who is available for overnight support. The family focused on creating a great home for the supportive neighbor, and this strategy has been effective at attracting and retaining long-term tenants.
The first few weeks Michael lived on his own was a worrisome time for Alice and her husband, however their worries didn’t become a reality.
During the week Michael lives at his own house, works at Boston Pizza, and volunteers at the local foodbank. On weekends, Michael gets to spend quality time with his parents on their rural property. Alice and Michael often run errands on the weekend in town and Michael has 2-3 times the number of people saying hello to him compared to his mother. This is a great sign that Michael is building relationships in his community.
What’s next for the family?
Michael’s family is thinking about things like, who is going to take care of the house when Alice and her husband aren’t there? Who will help Michael make decisions? To ensure continuity in Michael’s future his family is looking at forming a micro-board. The purpose of the micro-board will be to help manage the home, and to help Michael make future decisions.
Lessons we can learn from Michael and his Family on living an ordinary life:
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Ask for help. Michael’s family reached out to anyone with a phone that might be able to help them. The people on the other end of the phone had good intentions and wanted to help.
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Environments where he can learn from his peers. Regular school classrooms (shop and gym for Michael's), working at Boston Pizza, volunteering, the Special Olympics.
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Opportunities to show off his skills. Michael loves to show off what he is good at from work to his recreation of horseback riding.
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Proloquo2Go. Michael is non-verbal the Pro lo to go app on his iPod empowers Michael to express himself more fully with others.
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Let go, and let in. Over time Michael’s parents have had to let go, which has allowed Michael to become his own person. The family has also had to allow other people to enter and be a part of Michael’s life. (Without interviewing them first!). At some point, someone else is going to have to be there for Michael other than his parents.
I thank Alice for sharing her family’s story. There are great insights and lessons that we can apply to our own situations.
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Proloquo2Go - symbol-supported communication app - 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!
Thursday Aug 03, 2017
Thursday Aug 03, 2017
Hear the story of the Rougemount Housing Co-operative & the Deohaeko Support Network, learn what intentional community is and how to build it, learn the key factors that made Rougemount a success for people with a disability, and get a different perspective on creating a home for people with a disability.
This is part 4 of 6 of the mini-series on housing for people with a disability on the Empowering Ability podcast. In this episode, I bring you the story of Rougemount Co-operative Housing, and the Deohaeko Support Network– a co-operative housing project led by families that has embodied diversity, inclusion and community since its inception in the mid 1980’s. I had the pleasure of visiting the community for a guided tour, and I sat down to interview 5 members of the community. I
Narrating the story of Rougemount and Deohaeko is Janet Klees. Janet has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Until recently, she has been coordinator with the family-governed Deohaeko Support Network for over 20 years. She is the author of three books which are directly rooted in the Deohaeko experience, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world to present the unique options of this family group. Currently, Janet is the Executive Director with a family support organization, the Durham Association for Family Respite Services, with hopes of sharing her learning with a wider group of families in Durham Region and trying to affect larger scale supports and changes for families.
The Story of Rougemount and Deohaeko
Paraphrasing from the podcast Janet shares:
“In the middle of crisis, there is always opportunity. In the 1980’s in the Greater Toronto Area there was a housing crisis, much like there is today, and a group of 7 families came together with the goal of creating ordinary life in ordinary neighborhoods for their sons and daughters with a developmental disability.
At the time, the Federal Government of Canada and Provincial Government of Ontario was funding Housing co-operatives where the people don't own the units, but there are permanent tenants as long as they follow the rules of the co-op set by the co-op board. It just so happens that Rougemount was the very last co-operative housing project that was funded by the Canadian Government.
The building was constructed with 105 units, where the 7 sons and daughters with a disability would live in this community. There are approximately 200 residents living at Rougemount and the residents were selected to represent the ethnic, demographic, and socioeconomic makeup of the surrounding region with no more than 10% of population having a disability, which is natural in this region (as it is in most areas).
The founding families of Rougemount then created the Deohaeko Support Network, which is a group of families that think about the natural and paid supports for their 7 sons and daughters in the community.”
Intentional Community
There is a lot of discussion in the disability sector about what community is and the definitions can vary widely. The conversation can range from placing groups of people (such as people with a disability and seniors) together in a building to support each other, to a diverse group of individuals coming together to build relationships and share their gifts with each other.
Amazing community builder, Linda Dawe shares what she has learned about building an intentional community at Rougemount over the last 25 years:
“Intentional community is not something that you measure - it is something that you feel. It isn't a thing, it is in the hearts of people, and people embrace it to different degrees. One of the things that was important in creating the intentional community at Rougemount was the diversity in the residents that represented the actual community. Not placing groups of people together, such as seniors and people with disabilities. Intentional community at Rougemount started out as a grand thing, but simply it is just being in relationship with each other. People living well together. It requires effort, consciousness, and core people to hold the values of the community.
Janet Klees adds: “Simply put, community is being a good neighbor. At Rougemount people look for opportunities to be good neighbors and then talk about it, and hold up examples of it.
Intentional community isn't a building - it is a mindset! We can take the ideas with us, and many groups have. People have come into Rougemount and have seen how it works, and then brought it into neighborhoods with single family homes, and brought it into condo buildings. Rougemount is just an example of how it can work.
On the podcast, Rougemount residents and supporters Donna Mitchell (25 year resident, Deohaeko member), Tiffany Dawe (25 year resident, Deohaeko member), Shirley Brown (25 year resident), and Sorida Fonseca (Supporter to Tiffany Dawe) share their story of intentional community and community contributions. Through their voices it is evident that everyone is an equal contributor to this community. People with a disability aren’t viewed as a burden, they are valued as equals in the community that provided significant contributions just like everyone else.
Lessons from Deohaeko
5 Essential tips in shaping aspects of the community, invisible support, and making principled decisions that ensure that people are seen as ordinary neighbours sharing much common ground.
*As described by Janet Klees on the podcast
1. Diversity. Dedication to supporting, shaping, and holding a very typical community - less than 10% disability. It is the diversity of the co-op that makes it work. Diversity first before building intentional community.
2. Where people lived. The people with disabilities living at Rougemount live in apartments across the building, not segregated on one floor. This allowed people to be known by their individual identity, not just by the identity of their disability.
3. Support identified by their name, and deflected to person and their interests. We helped new support workers be thoughtful on how they introduced themselves. When support introduced themselves they 1) identified themselves by their name only, 2) directed the conversation back to the individual they were supporting, and 3) spoke to that individual’s interest. (Example: “Hi I am Sorida, I'm hanging out with Tiffany today. We are headed to the art gallery today - have you seen her art? You should come over to her apartment sometime and see her art.”)
4. Discouraged segregated activities. When new committees were starting we had lots of conversation about who would participate. We thought about who from Deohaeko would participate in committees and chose not to have too many people with a disability on one committee because it then becomes difficult for people to build relationships.
5. No shared support. The reason is that the families didn't want people to see the same supporter with different people with disabilities because then people look at people with disabilities as all the same. Rather than saying different people need different kinds of support. Even in a crisis support wasn’t grouped. We figured different layers of support that would come forward in these situation. We really focused on people having their own unique and individual lives.
*All of this is to focus on creating natural relationships, and it works.
Creating Housing Solutions Today
Janet has carried the thinking from her work with Deohaeko forward into her work today with Durham Association for Family Respite Services.
Janet shares:
"Housing is a community issue, not a disability issue. In our most recent housing project, we partnered with Brockville and District Association for Community Involvement on a housing project called, ‘Housing is a Community Issue’. We asked families who were interested in housing to join us in discovering housing solutions together and 35 families showed up. This is incredible because we told the families up front that we don’t have any money to give. It shows how understanding families are that they are going to be part of the solution.
Even in this housing crisis, people are still finding housing. With our project, we are thinking about what are the ways that people are finding to build, buy, rent, and to figure out housing. Then asking, ‘why can't these ways fit families that are looking for housing?’
This is not a Ministry of Community and Social Services (MCSS) issue, it belongs with housing. This is an affordability issue, not a disability issue. If people need renovations it is a cost issue. We need to ally ourselves with all the people that are struggling for housing. There are organizations like Habitat for Humanity, and Options for Homes that we can ally with. If MCSS is involved in housing they build a service, not a home. Families only have to think about their own son or daughter, and think about works best.”
In a recent housing forum in Durham Region, 70 families gathered to discuss person centered housing for their sons and daughters. The group compiled a list of 7 recommendations for the Government of Ontario, and for all of us to think about as we work toward creating a good life for people with disabilities.
1. Home, housing and support are 3 different things and bust thought of separately.
2. Most housing challenges are affordability, not disability.
3. People with disability contribute to their communities, they are not a burden.
4.Getting good housing and support doesn't mean taking away the individual’s control of their life
5.Providing renovation dollars allows families to be creative with their current home today (stabilize current situation), and allows for flexible housing in the future.
6. Stop funding congregated mega projects for people with disabilities, and disabilities / seniors. Commit to typical housing options and neighbourhoods.
7. Where there are Families that are willing to create a home in community the government needs to support with resources. These are cheapest, most effective models, and they are currently the least funded.
There are so many things I am taking away from my time with Janet, Linda, Tiffany, Shirley, Donna, and Sorida and grateful to them for sharing their experiences, and what they have learned.
The Key Takeaways for me are:
1. Building Intentional Community starts with rich diversity and upholding neighbourly values.
2. Fostering Intentional Community requires us to get a common understanding of each other, and through that understanding building trust and respect. From here we can show love to each other in small little ways, and uphold those acts of love.
3. Housing and support are best viewed as separate.
4. Be intentional in creating opportunities for people with disabilities to build relationship. Do not group them in housing or support.
5. As families, we need be a part of the solution. Design our lives, take control, and ask for help. We assume that someone is going to take care of things for us, but that someone is never going to come.
To end, here is a beautiful quote from community builder, Linda Dawe “Everyone needs good housing. Once they have good housing they are able to experience good things in their life.”
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Purchase These Books to Learn More Lesson's from Deohaeko:
"We come bearing gifts" by Janet Klees
"Our Presence has roots" by Janet Klees
Learn more about Deohaeko: Click Here
Learning events In Durham Region: Click Here
Book a study tour to learn about Rougemount and Deohaeko: Click Here
Contact Janet Klees: janet@legacies.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Jul 25, 2017
Tuesday Jul 25, 2017
Founder of online social media platform My Disability Matters, Dale Reardon, comes on the podcast to discuss this new platform for people with disabilities.
Dale, now 47, went blind at the age of 17 from Leber hereditary optic neuropathy, which is an inherited form of vision loss that usually begins in a person's teens or twenties. Dale has had an abundant career as a lawyer, tourist operator, and even worked for the Australia tax office before becoming a technology entrepreneur alongside his wife and creating the My Disability Matters platform.
The My Disability Matters Platform
My Disability Matters initially started as a news publishing and republishing platform for blogs of disabled people. The idea came when Dale saw a growing distrust from the disability community in disability news publisher, The Mighty. Dale says, The Mighty was publishing stories that exploited people’s disability as inspiration, also known as inspiration porn or ableism. Dale and his wife then evolved the news publishing idea into a social media platform for people with disabilities.
Paraphrasing from the podcast, “Dale found that discussing disability issues on existing social networks can feel unsafe because of the bullying and trolling that goes on. The My Disability Matters social platform provides a safe, supportive environment where disability issues can be discussed without fear. Living with disability can be lonely and isolating because of barriers such as transportation, and an online platform allows isolated people to form friendships online. Dale shares, when he was losing his eye sight a family with father and son who were blind took him under their wing and helped him to see that he would still be able to live a normal life. Dale hopes to create the space for many of these connections to happen for people with disabilities.”
At the date of publishing this blog and podcast, 1,650 people across the world so far are using the My Disability Matters platform. I encourage you to check out the platform at www.mydisabilitymatters.club. Create your free account, and start to build relationships with like-minded people.
Australia’s National Disability Insurance Scheme (NDIS)
On the podcast, Dale provides an overview of Australia’s National Disability Insurance Scheme (NDIS), which is a new way of providing support to people with disabilities in Australia since 2013.
Paraphrasing from the podcast Dale explains, “The NDIS is designed to give money to people who have a severe and profound disability to take care of their needs. Up until 2013, Australia used block funding (the government provided grants to organizations), and the organizations then served as many people as they could. In simple terms with the NDIS, a person with a disability will have a meeting with the government to determine how much help they need, they are then provided with the funding needed to support their disability, and they are free to hire the staff that needed without being bound to a support organization. When the NDIS roll out is complete in 2019, 460,000 people with the most severe disabilities will be covered under the insurance scheme. On the whole, there is probably about 4 million people in Australia with a disability. There are growing pains, but the hope is that the NDIS will revolutionize disability care in Australia."
To learn more about how the NDIS works, how it is helping people with a disability, and the associated growing pains tune into the podcast.
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
My Disability Matters Social Platform: Create your free account - Click Here!
My Disability Matters News: www.mydisabilitymatters.news
Contact Dale Reardon: dale@mydisabilitymatters.club
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tuesday Jul 18, 2017
Tuesday Jul 18, 2017
David Roche calls himself an inspirational humorist, who has a facial difference. The word inspiration can be viewed as a dirty word in the disability world, as many stories are told and consumed as 'inspiration porn' -inspiration calling on the bias of a person's disability. David however, provides authentic inspiration. We are automatically drawn to the difference David wears on his face, and he uses this difference to inspire us to look within ourselves to find our own inner beauty and strength.
On the Empowering Ability Podcast David tells us that, every time without fail when he orders his old-fashioned donut, and a double double coffee from Tim Hortons the server brings him back a cup of tea and no donut. When meeting someone for the first time they are completely absorbed in the visual. So absorbed that they don’t ever hear him.
When David speaks to audiences and meets people for the first time he encourages them to ask about his facial difference. He has found it as a useful strategy for him to get it out of the way. David was born with part of his mandible (lower jaw) missing, and visible swollen veins on the side of his face. By calling out his difference it allows him to clear out the space for himself, and allows him to be vulnerable and authentic.
Paraphrasing from the podcast David shares, “I have learned that everyone feels disfigured to some degree. Everyone caries a fear inside them that something is wrong with ourselves. In our western culture, everything is linked to our appearance, and women have to carry that more than men do. We all carry a little spot inside of us where fear and doubt resides - if we don’t deal with that then we are prey for the predators. I have learned how to deal with that feeling inside myself. I have learned some life lessons that you need to know, because if you don’t deal with that fear that is when the predators get you.”
For David, his face is his gift. He's had to find his beauty inside, and he feels that it is his purpose to help other people find their inner beauty.
David offers this advice to find your inner beauty:
“When you look in the mirror that is not you, that is how other people see you. So when you look in the mirror do this: don’t go looking for all your little flaws, and all the things that are wrong with you. Look in your eyes and love yourself, and smile and say good morning, and say how wonderful you are. If you look in the mirror and think that is you, you’re wrong. Because the real you is, as Jean Vanier says, love and community. The real you comes out with other people, and it comes out in the form of love. You have to find your inner George Clooney. So when you look in the mirror every morning lower your voice and say, ’Hey looking good this morning!’”
David and his wife do a program called, ‘Love At Second Sight’ about appearance and acceptance and you can watch their short film at loveatsecondsight.org. Also, if you are interested in learning more about David and his story pick up his book, ‘The Church of 80% Sincerity’.
David leaves us with his favorite quote from Jean Vanier to reflect on:
"There is a revolution going on. We are beginning to realize that everyone, every human being is important. We are beginning to see that every human being is beautiful. At the heart of this revolution are not the powerful, the wealthy or intelligent. It is people with disabilities who are showing us what is important - love, community and the freedom to be ourselves."
-Jean Vanier
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Website: http://www.davidroche.com/
Contact David Roche: Click Here
David's Book: Click Here
David's Film: loveatsecondsight.org
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tuesday Jul 11, 2017
Tuesday Jul 11, 2017
The Anthony Bourdain of the community care world, Jackie Goldstein, is our guest this week. Jackie is an observer, educator, author and speaker on community care support models. Jackie's book, 'Voices of Hope For Mental Illness; Not Against, With', shares the stories of many community care models across the United States, and the story of Geel Belgium. On this podcast, we discuss the story of Geel Belgium, Broadway Community Housing (BCH), and Gould Farm.
Geel Belgium
The story of the Geel Belgium's foster family community care model started as far back as the 13th century, and it still continues today! This makes Geel one of the oldest and largest community care models in the world. The foster family system evolved in Geel from the legend of St. Dymphna; the St. of loss causes. You can hear Jackie tell the fascinating legend of St. Dymphna on the podcast.
Paraphrasing from the podcast Jackie explains, "In the Middle ages, the Church is where people went to be healed. Word spread that there was a St. in Belgium that could heal people, and people started coming into Geel to be healed. Pilgrims started with 9 days of praying, and sometimes this worked because of a placebo effect. If praying didn't cure their illness, the church asked the towns people to take these pilgrims into their homes. Geel was an agricultural community so there was a deal made between the town and the pilgrims that they would work on the farm, and in exchange live in the home. This became the model, and the community thought of themselves of a healing community. It was a source of pride, there was no stigma. If a Geel resident didn't have a boarder, people wondered why - where you not good enough? It is not the way we think of a system starting today, this system evolved. However, the foster family system in Geel teaches us that by understanding the needs of the individual, and the resources of the community we can find solutions."
Broadway Housing Communities
Ellen Baxter was an observer of the Geel foster family model and saw the need of individuals in New York so she raised funds, and started Broadway Housing Communities (BHC). Her first housing initiative opened in 1986 for 55 homeless single adults. Shortly after in 1990 BHC opened an apartment for homeless families and adults (many of which had a mental illness). Jackie explains " At the time this was against societal norms, people thought that kids shouldn't be exposed to people with mental illness. However, the model proved to be effective. This model also fostered the creation of community by offering everything that was available in the building to the neighbourhood. In a more recent project, BHC has focused on poverty because homelessness had become more of a problem. Residents were selected into the building on a lottery system - some based on poverty, and some based on mental illness."
Gould Farm
Beginning in the early 1900's Mr. Gould opened his working farm to people in need, starting with people that were recovering from surgery and evolving into accepting people with disabilities. Jackie had the opportunity to stay at Gould Farm and she shares " Gould Farm is a self sustaining farm, now primarily hosting guests with an intellectual disability. Everyone who works at Gould Farm lives at Gould Farm. This includes the staff and their families, even their kids. It is hard to tell who is a guest and who is staff. It is a community."
What Jackie Has Learned
Jackie shares that the subtitle of her book, 'Not against, with', comes from the Robert Frost quote, "Always fall in with what you are asked to accept, take what is given, and make it over your way. My aim in life is always been to hold my own with whatever is going. Not against, with."
What Jackie has learned through her observations of many communities is that you can take any community and you can assume that there is a group of people that need support. You can then ask two questions:
What kind of support do they need? (The individual, not a group of people)
What resources are available in the community?
Then you take the 'Not against, with' approach to find the best solution for the individual by working with individual's abilities, and not ignoring their disability.
I thank Jackie for coming onto the podcast and sharing her observations and insights on community care, and creating a home for people with a mental illness and disability. If you are interested in learning more about community care models I recommend that you pick up Jackie's book, she would also be happy to speak to your event.
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribe to the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Email Jackie: jlgoldst@samford.edu
Jackie's Book, 'Voices of Hope for Mental Illness: Not Against, With'
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Jul 04, 2017
Tuesday Jul 04, 2017
Al Etmanski and I talk about how to bring social change to life by thinking and acting like a movement, the Registered Disability Savings Plan (RDSP), basic income for people with a disability, and the current state of the family and individual arms of the disability movement.
Think and Act Like a Movement
Al is the author of the book, ‘Impact: Six Patters to Spread Your Social Innovation’, and Al and I discuss the first pattern; think and act like a movement.
Paraphrasing from the podcast, Al tells us:
“It isn't about creating your own movement - we are all already part of many movements…. the question is which ones do we want to bring our energy and resources to. Thinking an acting like a movement is important because big ideas only come into reality when others feel that they have something in common. Movements create a popular support, and the cultural receptivity that emboldens politicians (enables the politician to make bold decisions). Most of the time politicians will ignore your proposals unless they pick up that there is a large degree of receptivity in the public. This is what makes movements more powerful than organizations. Movements don't happen overnight, they take time and become long term trends.”
An example of thinking an acting like a movement is how PLAN BC, an organization Al Co-Founded, led the charge to bring the RDSP to life. The RDSP is a savings plan for Canadians with a disability - enabling people with a disability to save for the future in a way that does not impact eligibility for government supported programs. The idea started at PLAN, but they realized they wouldn't be able to lobby for this change on their own; they had to bring in other people. In order to address the broader initiative, they created alliances with organizations, families, strangers and adversaries and tried to get as many people moving in the same direction to achieve the ultimate end outcome – financial security for people with a disability in Canada.
How do we think and act like a movement?
Al Suggests:
1) We need to calculate the movements you are already part of.
2) Identify the players that your movement touches on.
3) Of those players, identify those that are aligned with your values, and that you would want to work with.
4) Then determine how can you contribute, or how can your organization contribute. If we start with 1 or 2 % of our time and resources you can make a difference.
I got a ton of value from Al’s book ‘Impact: Six Patters to Spread Your Social Innovation’. I highly recommend you get yourself a copy if you are looking for a guidebook to bringing your social innovation to life.
The RDSP
I haven’t yet covered the RDSP on the podcast, so Al provides a high-level overview of how the RDSP works, and the benefits it provides. To sign up for an RDSP you must be eligible for the Disability Tax Credit (DTC). If you are eligible, or think you might be eligible for the DTC I highly recommend that you consider opening an RDSP to support securing your, or your loved one’s financial future. I will be covering the RDSP in greater detail in a future episode – so for now you can learn more by listening to this podcast with Al Etmanski, or by reading more from the government’s website.
The Family and Individual Arms of the Disability Movement
I ask Al to give his perspective on the current state of the disability movement, and he suggested that there many arms of the disability movement and to simplify it for our conversation we discuss the family and the individual arms of the disability movement.
Current State of The Family Arm
Paraphrasing from the podcast, Al tells us:
“The family arm isn't as strong as it used to be - I don't see the representation from younger family members that there used to be there 20 years ago. (Al hypothesizes that) this could be because the existing players aren't reaching out, or the agenda is not relevant to younger families. The medium of expression has changed dramatically and it has me wondering where the current limitations of the family arm are currently related to our adaptation into the social media world.”
Current State of Individual Arm
Paraphrasing from the podcast, Al tells us:
“There is a huge shift with how people with disabilities see themselves, and see themselves in the world. Al coins this as an ‘evolution of consciousness’. I come from and era where we were asking people to forget about their disability, and to push it in the background. We were asking society not to notice the disability. I am seeing an evolution of consciousness that seems to be comparable to the rising of women in the woman’s rights movement, and minorities in the civil rights movement. People (with disabilities) are taking back the language and beginning to describe their situations the way they are experiencing them. I've begun to see this everywhere, and I think this is so significant. I think it demands that we think about what role we have as advocates, supporters, and family members to make sure that we don't get in the way.”
On the podcast, Al shares the moment he realized this evolution of consciousness in a story as a father with his daughter Liz. Liz acknowledged her disability during a spoken word performance in front of an audience and Al states, " It was both the real deal, and it was no big deal." The full story is available on the podcast.
There are also many groups of people that have emerged across Canada that are interpreters of this evolution, such as the organization Exeko. Exeko provides ‘intellectual mediation’ with the assumption of intellectual competence, and their job is to make sure others understand what people with a disability are saying, untampered.
Basic Income
Al is currently working on the basic income movement to provide a guaranteed basic income for people with a disability in British Columbia, Canada. As a comparison, think guaranteed income for seniors (ex. Canada Pension Plan). The idea is to end the current welfare framework that has restrictions and penalizes people, and to provide a guaranteed basic monthly income with no restrictions, or requirements for reporting. Any additional income would be additive and be taxed accordingly, but would not disqualify you from receiving the basic income. If you are interested in learning more, or contributing to this movement you can check out The Canadian Basic Income Network.
My sincere gratitude goes out to Al for sharing his insights with us, and for the work he has done and is doing to make the world a better place. Thank you, Al!
I couldn’t cover all the content from the podcast in this blog – there was just so much rich content! I consider this podcast a ‘must listen to’ for the opportunity learn from one of the most insightful and influential people in the social innovation and disability space. Also on the podcast, Al gives us a sneak peek inside the current book he is working on. Listen to the podcast to find out more!
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Website: aletmanski.com
Al Etmanski's Blog: http://aletmanski.com/blog/
(Writes about issues for people who want to make the world a better place.)
Article: 'The 'C' In Canada Stands for Caring' Vickie Cammack Click Here
Al’s book ‘Impact: Six Patters to Spread Your Social Innovation’
Al's Blog referencing King Arthur’s Night (‘Evolution of Conciousness’) http://aletmanski.com/impact/artists-arent-ahead-of-their-time/
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tuesday Jun 27, 2017
Tuesday Jun 27, 2017
I ask Keenan, “What is the most common question you get asked in your role as Co-leader at LiveWorkPlay?”. Keenan replies “Housing – what should we do in housing?” - At the end of the podcast recording in Episode 1; “The movement to individualized support, and accessing developmental support services”,
In this week’s podcast I share unreleased audio from our very first guest on the podcast, Keenan Wellar. Keenan is the innovative Co-founder and Co-leader of LiveWorkPlay, a developmental service agency that works to facilitate community connections and relationships in Ottawa, ON.
When answering 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;
Where do most citizens tend to live in your community? (Let’s start there)
What are the barriers to those outcomes (living in 'ordinary' housing) ?
These are great questions to get you thinking about the best solution for you and your family. To help guide your thinking process I’ve created a FREE workbook to help you create your vision of the best housing solution for you, and to take the first steps toward implementing your solution. Click Here to download the free workbook.
Keenan shares, "If we just look at the systemic one size fits all housing solution then we are closing a lot of doors." I agree. We also might not be creating an environment for a person with a disability to flourish by taking a one size fits all approach.
Keenan also touches on the problem of isolation and loneliness for people with a disability, and how important it is to work on developing unpaid relationships. Keenan and I dive deep into building social capital topic with Al Condeluci in Episode 6; “Social Capital; Building Relationships for Improved Well-Being”
Take a listen to this podcast to get a different perspective on creating the best home for you and your loved one.
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
How to Contact Keenan Wellar and LiveWorkPlay:
Website: http://liveworkplay.ca/
Phone: 613-702-0332
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tuesday Jun 20, 2017
Tuesday Jun 20, 2017
Guest Ron Pruessen, father to Caroline, who has a developmental disability, member of Opportunities Mississauga, and Chair of the Ontario Developmental Services Housing Task Force. In this episode, Ron has an open conversation with me as a father and gives his personal perspective on housing for people with a developmental disability, rather than speaking for organizations and projects he is involved with.
This is Part 2 of a 6 part mini-series on housing for people with disabilities. We are exploring the housing issue for people with disabilities, new innovative ideas, and success stories from around the globe. Subscribe to the mailing list to get all 6 episodes sent directly to your inbox!
Ron has been advocating for people with disabilities for the last 20 years. He was moved to do something when he, and his wife Alice, found that there weren’t many opportunities for their daughter Caroline, now 40, when she graduated high school. Ron got involved in a family group called Opportunities Mississauga, which now represents about 200 families. Currently, Ron sits at the Partnership Table with the Ontario Provincial Government to voice what is needed in terms of support for people (and families) with a developmental disability. This led to the creation of the Ontario Developmental Services Housing Task Force (Housing Task Force), in 2015, to begin addressing the housing crisis for people with a developmental disability in Ontario. Ron currently serves as the Chair for the Housing Task Force.
As explained in Part 1 of the mini-series on housing, ‘Creating a Home, with Marg McLean’ (Listen Here) – there are 12,000 to 17,000 people in Ontario waiting for housing and the list is growing. I recommend you check out Part 1 as Marg and I explore the elements of creating a home, and I provide a Free Workbook to help guide you through creating your vision.
The Housing Task Force
The Housing Task Force was created by the Ontario Provincial Government, but it is not operated by the government. It is operated at arm’s length by individuals that need support, families, and members support agencies. It was evident that in the past the government wasn't looking outside the box, so the focus has been placed on finding creative solutions. The Housing Task Force was given $3MM in annualized funding, which has funded 18 pilot projects from the 200 proposals submitted. The Housing Task Force is now working closely with the people in the pilot projects to learn what is working, and what isn’t.
Personally, I love that the Ontario Government took an entrepreneurial approach to the problem, and allowed the Housing Task Force to test different ideas. The next challenge will be to fund and scale the housing models that have been proven to be effective in providing people a good life.
Ron shares that in his opinion it is the Government’s responsibility to provide housing and a good life for people with disabilities, just like they do for senior citizens. The Ontario Government didn’t do anything for a long time, but the current government deserves credit for the approach it is taking. However, Ron says there is much more work to be done.
I ask Ron, as a father and someone that is involved with a family group and the housing task force what have you learned along the journey on housing?
Ron shares that for a long time the government has had a limited menu (of housing options). There has been a lot of wonderful ideas at the grassroots level that haven't had the opportunity to come to life. Individuals have been doing the visioning, and they see the possibilities out there.
The most significant example of creativity Ron has seen in 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 (or home) 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.
Examples of partnering with community:
1) Mobilizing resources to launch a project with local governments; cities, towns, and municipalities. (Ex. affordable housing programs and agendas.)
2) Organizations like Habitat for Humanity and building developers contributing resources.
3) Community colleges participating in programs that where there are opportunities to develop friendships.
I ask Ron, knowing what you know now - what are the first steps you would take to put a housing solution in place?
Ron replied, we want to turn to the government but, that isn't a very effective because the government has a lot of demands on it (education, infrastructure, etc.), and there isn't enough money.
Don't just wait and sit around, be proactive, and start community conversations.
What we should have done is build the community connections and relationships that have been effective; local government, social clubs, churches, local agencies, organizations. This is where we started a long time ago, and this is where we are going back to.
I ask Ron, when should you start designing a life with your son or daughter with a disability?
Ron suggested parents should start having these family conversations in the early teenage years. At this age you start to learn who this person is, what they want to contribute, and what their gifts are.
When it comes to housing, it is a long process. Caroline (Ron’s daughter) went on the residential housing support waitlist when she was 16, and they thought it would take about 10 years for her to find a home. 22 years later Caroline was still waiting for an opportunity to emerge.
The simple message is: the earlier, the better.
Tune into the podcast to hear more from Ron about building community, outside of the box thinking, building a whole life, and building relationships.
Ron strongly urges us to keep the pressure on the Government, keep pushing. Talk to your member of parliament, and make it clear that this is a problem. Help these people empathize with your lived experience, because they haven't lived the life. They need to hear our stories.
I thank Ron for coming on the podcast to share his experience and perspective on housing for people with a disability.
I’ve created a FREE workbook to help you create your vision of the best housing solution for you, and to take the first steps toward implementing your solution. Click Here to download the free workbook.
Love & Respect,
Eric
How to Contact Ron Pruessen:
Facebook Page: Click Here
Podcast Resources:
P4P Booklet on Housing Task Force Projects: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tuesday Jun 13, 2017
Tuesday Jun 13, 2017
This week’s guest on the Empowering Ability Podcast is Win Kelly Charles. Win was Born with Cerebral Palsy (CP), and has defied the odds by becoming an author, the host of the Butterflies of Wisdom podcast, a competitor in the Kona IronMan Triathlon, CEO of her own jewelry design company, and motivational speaker. Win Charles truly is an inspiration to many.
Win is a disability advocate, and openly shares her journey as a person with CP. On the podcast, Win tells us that CP occurs at birth, and isn't genetic (so it isn’t something you will pass on). For Win CP impacts both sides of body; her left hand is weak, and her right leg is weak, and she has undergone 100+ surgeries.
Win is an extremely resilient person, so I ask her; what is the mindset that you carry to be the person that you are?
Win shares that she is “..not named Win for nothing.” Win’s mother named her after her grandmother, who’s name was Winaphin. From the tone in Win’s voice when sharing this story, I could hear the sense of pride and motivation this gives her.
Second, Win was treated like she didn’t have a disability by her parents. Win’s parents put her in the regular classroom, where she was treated as an equal and was able to participate in the same programming as everyone else. From her experience, Win suggests that if possible parents should put their kids in regular classrooms.
The approach that Win takes in her life is to "…….Always, Always, Always, look outside the box.... The solution is never cookie cutter." Win brings out a great point here as many families and people with a disability are constantly facing road blocks, and have to look for different solutions. Look outside the box, as win suggests, don’t take no or the status quo for an answer, be creative and find a different path, find your path!
I ask Win who her mentors were in her life that have made a big impact on her?
Win shares that there were a couple of educators who she views as mentors, but the biggest mentors in her life were her Parents. Win again drives home the point that her parents raising her as if she didn't have a disability empowered her to become the woman that she is today.
Take a listen to the podcast to hear our discussion on inclusion, how Win became an author and a podcaster, as well as the messages Win shares on disability advocacy.
If you want to learn more about Win’s journey, I recommend you pick up her book ‘I Win; Hope and life as a disabled woman living in a not disabled world’ on Amazon.
Win tours the country, speaking to schools and institutions to raise awareness about cerebral palsy, and living a full life no matter what holds you back. It was a pleasure having Win on the podcast, and if you want to hear more from Win you can Sign up for Win’s newsletter to stay updated on new releases and appearances.
Love & Respect,
Eric
How to Contact Win Kelly Charles:
Twitter: @WinKellyCharles
Win's Art: Click Here
Podcast: Butterflies of Wisdom
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The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Jun 06, 2017
Tuesday Jun 06, 2017
Mitch, a high school senior, started to explore part-time employment in his community and was continually turned away, due to what Mitch thinks was his disability. Mitch and his mom, Charity, then teamed up to make Mitch's dream a reality and created 'Mitch and Mama's Coffee Bar'.
This week's guests on the Empowering Ability Podcast are mother and son, Charity Hilson and Mitch Dale, who tell their story of making Mitch's dream of owning a coffee shop come to life. Danny Steeves Eby, fellow entrepreneur from Episode 8 of the podcast joins us as a co-host on this episode.
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Mitch and Charity were pushed by their friends and family to start, and with a small amount of capital they opened up a coffee bar inside an existing operating store in their hometown of Listowel, ON. The coffee bar currently employs Mitch and Charity, and provides volunteer opportunities to people in the community who have a disability. They have a grand vision of having their own store, with couches and tables, but the most important thing was for the mother and son team was to get started, so they downsized their dream (for now).
Mitch shares that having a coffee shop is his dream because he is a people person, and he loves to be around people. Every cup of coffee comes with a free hug from Mitch, and he thinks it keeps many customers coming back. I was lucky enough to get 3 hugs from Mitch, and for me the hugs were worth much more than the price of a cup of coffee. Mitch and Charity share that most people in their community have embraced their new venture, and are even offering to help find funding.
Charity provides advice to other families looking to start their own venture, "Really listen to what your child is wanting, it is easy to take over their dream..... (and) think about the best business to start that utilizes their gifts. Start slow, don't get discouraged, don't give up, use your resources. It is very hard to ask for help, but people really want to help you. If you just ask for help things run a lot smoother."
Charity also shares, "I'd like families to know if I can do it, anyone can.... I am a single mother with 3 kids and 2 jobs."
This is a great story of creating an incredible ordinary life for Mitch, Charity, and other people with a disability. Mitch and Mama's is also helping to change societal perceptions for people with a disability, by providing the opportunity to show their gifts through employment in the community. Stop by Mitch and Mama's to get a coffee, and a hug from Mitch - you will understand what I mean.
There are a lot of ideas in the grave yard. Bringing an idea to life and creating something takes a lot of courage. Just take the first step, start! Then enjoy the journey.
I'd like to thank Mitch and Charity for coming on the podcast to share their story, and lessons learned from starting their own venture. It was a pleasure interviewing them and I am excited for my next trip back to Mitch and Mamas. I'd also like to thank my co-host for this episode, Danny Steeves Eby, for his positivity, contagious laugh, and insightful questions.
Love & Respect,
Eric
How to Contact Mitch & Mama's:
Email: mitchandmamas@gmail.com
Phone: 519-291-7235
Website: http://www.mitchandmamascoffeebar.com/
Facebook: 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!
Monday May 29, 2017
Monday May 29, 2017
This is Part 1 of a 6 part mini-series on housing for people with disabilities. We are exploring the housing issue for people with disabilities, new innovative ideas, and success stories from around the globe. Subscribe to the mailing list to get all 6 episodes sent directly to your inbox!
This week's guest on the Empowering Ability Podcast is Marg McLean, Executive Director of Community Living St. Marys. Marg and the Community Living St. Marys team have been helping people with a disability create their home, and support solutions since the 1980's when people were leaving institutions.
The Problem:
As of 2016, the Ontario Ministry of Community and Social Services was supporting approximately 18,000 people with a developmental disability in group homes and other supported living, and an additional 9,700 people were on a waiting list for residential supports. So, the reported demand for residential housing support is over 50% greater than the supply. The demand is likely higher than reported because it obviously doesn’t include people who have not registered for the list. We will be exploring this problem in other parts of the world as the housing mini-series continues. Reference: (The Toronto Star, 2016)
This is a massive line to wait in as supply of residential homes is increasing at a much slower pace than the demand for people with a developmental disability in need of housing.
So, should families be planning their own housing solution?
Marg shares that people are going on the waitlist without thinking, talking, and planning what an ideal home looks like for them. (Note: This is exactly what my family did at the start of our housing search for my sister.) What works well is for families to come up with a vision of what would be a good home in community.
When thinking about your home, there are 4 questions you need to answer:
I’ve created a FREE workbook to help you create your vision of the best housing solution for you and to take the first steps toward implementing this solution. Click Here to download the free workbook.
Marg shares the stories of Michael, Bill, Gord, and Kayleigh on the podcast. Below is a short overview of the home they have created, listen to the podcast and watch the Community Living St. Marys videos to hear their full stories.
Success Stories of Creating Home:
Michael’s story – In his mid 20’s Michael lived in a rural area with his family, and was looking for opportunity to move out of his family home. Michael’s family bought a duplex in a small city, where Michael attended school and has access to transportation. Michael and his housemate live in the upper level and his supportive neighbours, Leah and her mom, live in the main level unit. The duplex is paying the mortgage, and when the mortgage is paid off it will enhance his Registered Disability Savings Plan (RDSP).
Note: Housing trusts can be explored if you are considering home ownership.
Bill’s story – Bill had a supportive housemate living with him, and when his supportive housemate purchased their own home Bill moved with them. Sharing a home with an individual or a family is commonplace, but can be forgotten when considering housing options.
Gord’s story – Gord wasn’t interested in a staff model so he found a couple that live on a farm to live with, and they welcomed him in with open arms. This couple and Gord have shared their lives together for the last 19 years.
Kayleigh’s story – Kayleigh moved out of her mom’s home and into her own apartment in an 8-plex building as part of Community Living St. Marys’ ‘Supportive Neighbour’ project with The Ontario Developmental Services Housing Taskforce . A young family lives beside Kayleigh and provides some supports. Kayleigh also ended up inviting Yvonne to live with her as a roommate.
* Note: The Ontario Developmental Services Housing Taskforce operates at arm’s length from the Ontario government who provided $3MM to fund new innovative housing projects over a 2-year period. In year 1, 12 projects were funded by the Housing Taskforce.
Eric’s Story – I live with a roommate in his own home, and he has outside support come to the house. We are roommates who provide each other friendship and I help with things like lunch, letting his dog out, and being there overnight.
Check out the podcast to hear some creative ways you can find people to share home with, and to hear the Lesson’s Marg has learned helping people with disabilities to create their home.
A key takeaway for me from the conversation with Marg, and the research that I have done on housing is that families need to start thinking and acting on their own vision for housing. What does the ideal home look like? What does the ideal community look like? Take control of your own future. Click Here to download the free housing workbook to get started on your solution.
I thank Marg for coming on the podcast and sharing her experience and stories on housing for people with a disability.
How to Contact Marg McLean:
Email: mmclean@clstmarys.ca