Empowering Ability Podcast

#092: Group homes: The dangerous truth

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

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

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

In a word: It's dangerous.

Curious? Concerned? You should be.

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

With gratitude,

Eric

 

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

Register for the Life Plan Workshop [FREE]

#077: Learn How Elaine Shifted From Caregiver to Coach and Created an Awesome Ordinary Life with Spencer

Spencer and his mom Elaine joined me in this conversation to share how they went from butting heads with each other to collaboratively creating an Awesome Ordinary Life for Spencer.

For them, it felt like other people were picking up their lives after COVID restrictions eased, and they were stuck in isolation.

Spencer shared that he didn't want to leave his bedroom and was on the edge of depression.

Elaine and I started to work together, and Elaine learned to shift from being the caregiver to the coach. When Elaine started collaborating with Spencer, they took some big steps forward.

One big step forward was starting Spencer's support circle of friends, which is a group of people in intentional, reciprocal and freely given relationships with Spencer.

Spencer's confidence has grown; he's exploring his interests in community, and even landed a paid part-time job!

 

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

Click the link below to join our free upcoming workshop:

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

#075: From dependence to independence, hear mother Alina’s story.

Alina, the mother of 17-year-old Juliana, joined me to talk about their experience of going from complete dependence on Mom to Juliana growing her capability and independence.

Alina was doing EVERYTHING for Juliana. The idea of independence was there, but Alina was locked into the habit of doing everything.

When Alina thought about Juliana's independence, her fears kicked in, creating a state of overwhelm and keeping them stuck. This resulted in Juliana learning that she couldn't do things.

Then things started to change when Alina and I began to work together. Alina's awareness and mental outlook shifted, which was the key to unlocking Juliana's independence.

Alina no longer feels like the caretaker and has to solve all the problems. Juliana and Alina are now on an equal footing, having more open dialogue, and Juliana is starting to lead her own life!

 

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

Click the link below to join our free upcoming workshop:

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

#073: How Chloe left the high school transitions program and gained paid employment

To help you see more ordinary life possibilities for your loved ones with developmental disabilities, I will share stories of families working with their loved ones to take steps forward to create an Awesome Ordinary Life.

Chloe was in a high school transition program for students with disabilities in her final years of high school.

She became increasingly frustrated by the lack of opportunity the transition program provided and felt like it was holding her back.

Chloe, supported by her mom, Laura, decided to leave the support of the transition program and pursue paid employment.

Today, Chloe is gainfully employed, building meaningful relationships with peers at work, and enjoying her interests in ordinary places in the community.

 

Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop that Laura took to start building an Awesome Ordinary Life with Chloe!

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

Taking Charge of Life, with Libby Ellis

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

 

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

 

About Libby Ellis:

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

 

Libby’s Story:

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

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

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

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

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

 

How did the separation from your brother impact you?

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

 

Can you share Matthew’s experience of separation?

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

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

 

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

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

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

 

How did you breaking through communication and behavioral barriers?

Paraphrasing from the podcast, Libby shares:

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

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

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

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

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

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

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

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

 

What are some of the other key lessons you learned?

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

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

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

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

 

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

 

Love & Respect,

Eric

 

Resources:

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

#039: Siblings - Our Most Important Relationship, with Don Meyer

Don is one of the world’s leading experts on siblings, and has supported siblings for the last 35 years.

Don Meyer, Director of the Sibling Support Project. 

The Sibling Support Project is a national program in the United States, with international presence, dedicated to the millions of brothers and sisters of people with developmental disabilities. The program is supported by Washington state’s largest early intervention center, the Kindering Center.

 

Why Are Brothers and Sisters So Important?

 

Paraphrasing from the podcast, Don Shares:

 

1. Anything we can say about being a parent, we can put ditto marks underneath for siblings. The research says siblings have parallel experiences to their parents. But, when we look at the services, and considerations that siblings get - siblings get the short end of the stick. In the USA, there are 200-300 people that have full-time jobs to support parents, there is 1 person with a full-time job supporting siblings (and that is Don).

2. Brothers and sisters have the longest lasting relationship with a person that has a developmental disability. This relationship is lifelong. When mom and dad are no longer available the brother and sister’s will make sure their sibling will live a dignified life in the community.

3. No one logs on more moments and minutes with their brother or sister.

4. No one has a greater impact on the social development of a person with a developmental disability.

 

 

Why Are Siblings Underserved?

 

Paraphrasing from the podcast, Don Shares:

 

Siblings are off the organization’s radar screens because they not squeaky wheels. As siblings outlive their parents service providers are beginning to realize there are these brothers and sisters out there.

 

If you want to ensure a good long-term outcome for people with disabilities then invest in their siblings because they are going to be there in the long haul.

 

There is reason to believe that intervening with siblings, even young siblings, has a benefit to everyone.

 

 

 

How Can Service Providers Invest In Siblings?

 

Paraphrasing from the podcast, Don Shares:

 

Service providers can create initiatives that specifically reach out to brothers and sisters, and they can change their policy to explicitly invite brothers and sisters.

 

Provide siblings information that they think is important. Brothers and sisters have a lifelong need for information. This is a parallel that siblings share with parents.

 

How do siblings get their information? They are lucky if they get it from their parents. Educational materials need to be prepared specifically for siblings.

 

 

Sibshops

 

Don goes around the world and shows people how to start Sibshops; peer support and education programs for school aged siblings that have a brother or sister with a developmental disabilities. There are 350 Sibshops worldwide, including in the USA (250), Canada (30), Iceland, Ireland, and Japan. Sibshops got their start in 1982, and Don has been training people on how to run Sibshops since 1990. The typical Sibshop age spread is 8-13 years old. This age spread is tweaked all the time – sometimes as low as 6 years old, and some organizations even have teen Sibshops.

 

One of the biggest benefits of Sibshops that Don has observed is the peer to peer support and connection with other kids that are walking down a similar path. Don has met many siblings that don’t talk to another sibling until they are in their 40’s! It is unheard of for a parent to wait 40 years before meeting another parent with a child that had a developmental disability. But, this is the reality with siblings. (In my own experience, I didn’t connect with another sibling until I was in my late 20’s. Also, I recently facilitated an adult sibling meeting and it was the first time 30% of  the group had ever connected with another sibling.)

 

Don shares, “We are giving young siblings a chance to meet young siblings, learn about the services their brothers and sisters are getting, and to learn how others are dealing with sticky situations. We have designed Sibshops to be fun, because they are for kids. We have a celebration of contributions made by brothers and sisters, and we mix content activities with recreational activities.”

 

 

The University of Washington has researched the effectiveness of Sibshops and found:

• Over 90% of respondents said they had a positive effect on how they felt about brother or sister.

• 2/3 of respondents were taught coping strategies.

• 94% said they would recommend Sibshops to others.

• 3/4 of respondents said Sibshops impacted their adult lives.

 

Don Shares, “(The value of Sibshops is…) to be in the community of people who get it. To vent in a non-judgmental forum, to know you are not alone, and learn about resources and strategies.”

 

 

On the podcast, Don shares the unique concerns and opportunities that he has observed after interacting with 1000’s of siblings around the world. The list includes concerns like guilt and embarrassment, but also includes opportunities like maturity and diversity. I recommend you take a listen to the podcast to hear all of Don’s insights.

 

This podcast is packed full of resources for siblings, which are all listed below in the resource section.

 

A big thank you goes out to Don for joining us on the podcast and sharing his work and insights on siblings!

 

 

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:

 

Social Networking Groups for Siblings:

Sibnet Adults Click Here

Sib Teen Click Here

 

 

Sibshop curriculum Click Here

The Sibling Survival Guide, created with Sibling Leadership Network. Click Here

The Sibling Slam Book – by teen sibs for teen sibs. Click Here

Views From Our Shoes – collection of essays from young siblings. Click Here

Thicker Than Water – collection of essay from adult siblings Click Here

 

Being the Other One, by Kate Strohm Click Here

Riding The Bus with My Sister, by Rachel Simon Click Here

Special Siblings, by Mary McHugh Click Here

 

Paper: What siblings would like parents and services providers to know. Click Here 

 

 

Contact Don

Email: info@siblingsupport.org

Phone: 206-297-6368

 

 

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

 

 

 

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

 

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#037: Redesigning the Disability Service Organization

In 1995, Patti looked to redesign the disability support organization, moving away from the norm, and she co-founded Neighbours Inc.; an organization that supports people in an individualized way to live a full life in a community in the of their choosing.

 

What led Patti to do things differently?

 

Paraphrasing from the podcast, Patti Shares:

 

It was the inequities that I saw.  In the group homes (I worked in), people were living with the same people that they were living with in the institutions, and in some cases people that they didn’t like. People were going to day programs instead of having a job, they were all riding in the same van. They were living a separate life from everyone else. The people living in the group home had a nicer home, but life wasn’t all that different than living in an institution.

 

The staff working in the group homes wanted to do good things for people, and were committed to helping people to have a full and meaningful life. But that wasn’t happening.  

 

Patti discovered that it was the way that the supports were designed that was preventing the outcomes of living a full life. “No matter how hard we were working it didn’t matter, there was a more global structural issue. We needed to design the support differently. The supports we were providing were keeping people from living the life they wanted to live. Instead of helping people, the structure of the work we were doing was hindering people from going in the direction they wanted.”

 

Patti felt that she had to take some personal responsibility. In her own heart, she felt that she had to do something.

 

 

She Created Neighbours

 

Neighbours started with the fundamental beliefs that people should be in control of their life (supports, services, homes, etc.); not the agency. Patti shares, “This is a dramatic shift. We are working for the person, they are the boss. If they decide to go (fire Neighbours Inc.) they can go, and they can take their money. (At Neighbours Inc.) we didn’t want people to be dependent on the developmental disability system. If you are dependent on the system (funding) then you are stuck. We invested in looking into other resources for people.  There is no one that we support that is wholly supported by the government. (The people Neighbours Inc. supports have a combination of) social resources, support resources, and community resources.”

 

 

The Neighbours Inc. 5 Values:

 

Neighbours Inc. was founded upon 5 essential values that are creating the outcomes of people living the life they want to live. Patti calls this their ‘Investment framework’ and shares, “If you invest in these areas with people you can help them develop a meaningful life.”

 

Paraphrasing from the podcast Patti shares the 5 values:

 

Value 1 - Dreams and Vision: People’s lives and support should be built upon a person’s dreams and vision, not based on a program. A lot of people have not had a lot of life experience, so when you talk to people about how they want to live their life it is really hard for them to know how they want to live their life. We need to support people to explore, to see the world, and to see what is possible. A lot of people have lived isolated lives with supporters coming in and out of their lives for years. We have to come in and build trust. (At Neighbours Inc.) we use Maps and Paths ( as part of our process (to help people create their dreams and vision), and this is a process over time.

 

For more information on person centered planning processes such as MAPS and PATH, see Inclusion Press (Forest, Pearpoint, O’Brien, Kahn) Click Here

 

Value 2 - Choice and Control: People should have control over their own life, and the responsibility that goes along with that. Any money to support a person is their money, it is their budget, and they have authority over their budget (Individualized budgets). They are the boss of their own staff and make decisions on who they hire, fire, and what they want to pay them. We think people should have control of their own home, so we don't own any property. Instead, we support people to rent and buy their own homes. If a person decided they didn’t want us to work for them anymore then it is their home, and their money.

 

Value 3 – Finding Gifts and Strengths: Helping people figure out who the person is, and what they have to offer the world. What is the person’s gifts? What is their passion? This is helping people see themselves differently, and helping other people to see the person differently (mindset shift from looking at deficits).

 

Value 4 – Places to Share Gifts: We help people to find the place to share their gift. These are places in the community where the person is valued as an asset. This is the reason we made a decision not to have offices (because of their commitment to helping people finding places in community).

 

Value 5 - Meaningful Relationships: We support people to have meaningful relationships in their life (Patti views this as the most important value). Good paid relationships are critical, but beyond that it is important to have non-paid relationships – Friends. The stats are show that loneliness kills more people than smoking. When we look back on our lives it is the people you loved, and the people who loved you that you remember. With disability, it is often a small number of people that you love and who love you, and it is usually our family.

 

On the podcast, Patti shares several stories of amazing people she has worked with and how they embraced these values to live ordinary lives in community.  One of Patti’s stories is about a 79-year-old woman moving out of an institution, after 50 years of confinement to the institution grounds, and creating her life. It is an incredible story that I recommend listening to.

 

What led Patti to do things differently?

 

Paraphrasing from the podcast, Patti Shares:

It was the inequities that I saw.  In the group homes (I worked in), people were living with the same people that they were living with in the institutions, and in some cases people that they didn’t like. People were going to day programs instead of having a job, they were all riding in the same van. They were living a separate life from everyone else. The people living in the group home had a nicer home, but life wasn’t all that different than living in an institution. 

The staff working in the group homes wanted to do good things for people, and were committed to helping people to have a full and meaningful life. But that wasn’t happening.  

Patti discovered that it was the way that the supports were designed that was preventing the outcomes of living a full life. “No matter how hard we were working it didn’t matter, there was a more global structural issue. We needed to design the support differently. The supports we were providing were keeping people from living the life they wanted to live. Instead of helping people, the structure of the work we were doing was hindering people from going in the direction they wanted.”

Patti felt that she had to take some personal responsibility. In her own heart, she felt that she had to do something.

 

She Created Neighbours

Neighbours started with the fundamental beliefs that people should be in control of their life (supports, services, homes, etc.); not the agency. Patti shares, “This is a dramatic shift. We are working for the person, they are the boss. If they decide to go (fire Neighbours Inc.) they can go, and they can take their money. (At Neighbours Inc.) we didn’t want people to be dependent on the developmental disability system. If you are dependent on the system (funding) then you are stuck. We invested in looking into other resources for people.  There is no one that we support that is wholly supported by the government. (The people Neighbours Inc. supports have a combination of) social resources, support resources, and community resources.”

 

 

The Neighbours Inc. 5 Values:

Neighbours Inc. was founded upon 5 essential values that are creating the outcomes of people living the life they want to live. Patti calls this their ‘Investment framework’ and shares, “If you invest in these areas with people you can help them develop a meaningful life.”

 

Paraphrasing from the podcast Patti shares the 5 values:

 

Value 1 - Dreams and Vision: People’s lives and support should be built upon a person’s dreams and vision, not based on a program. A lot of people have not had a lot of life experience, so when you talk to people about how they want to live their life it is really hard for them to know how they want to live their life. We need to support people to explore, to see the world, and to see what is possible. A lot of people have lived isolated lives with supporters coming in and out of their lives for years. We have to come in and build trust. (At Neighbours Inc.) we use Maps and Paths ( as part of our process (to help people create their dreams and vision), and this is a process over time.

 

For more information on person centered planning processes such as MAPS and PATH, see Inclusion Press (Forest, Pearpoint, O’Brien, Kahn) Click Here

 

Value 2 - Choice and Control: People should have control over their own life, and the responsibility that goes along with that. Any money to support a person is their money, it is their budget, and they have authority over their budget (Individualized budgets). They are the boss of their own staff and make decisions on who they hire, fire, and what they want to pay them. We think people should have control of their own home, so we don't own any property. Instead, we support people to rent and buy their own homes. If a person decided they didn’t want us to work for them anymore then it is their home, and their money.

 

Value 3 – Finding Gifts and Strengths: Helping people figure out who the person is, and what they have to offer the world. What is the person’s gifts? What is their passion? This is helping people see themselves differently, and helping other people to see the person differently (mindset shift from looking at deficits).

 

Value 4 – Places to Share Gifts: We help people to find the place to share their gift. These are places in the community where the person is valued as an asset. This is the reason we made a decision not to have offices (because of their commitment to helping people finding places in community).

 

Value 5 - Meaningful Relationships: We support people to have meaningful relationships in their life (Patti views this as the most important value). Good paid relationships are critical, but beyond that it is important to have non-paid relationships – Friends. The stats are show that loneliness kills more people than smoking. When we look back on our lives it is the people you loved, and the people who loved you that you remember. With disability, it is often a small number of people that you love and who love you, and it is usually our family.

On the podcast, Patti shares several stories of amazing people she has worked with and how they embraced these values to live ordinary lives in community.  One of Patti’s stories is about a 79-year-old woman moving out of an institution, after 50 years of confinement to the institution grounds, and creating her life. It is an incredible story that I recommend listening to.

A big thank you to Patti for coming onto the podcast/ blog and sharing her insights on creating the environment for people to succeed in building a full and meaningful live. I encourage you to reach out to Patti if you would like to explore this thinking for your organization or family.

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

 

Love & Respect,

Eric

 

 

Resources:

Website: Neighbours-inc.com

Education and stories: Neighbours-international.com (video + writing)

Maps and Paths: Click Here

Email Patti: Pattiscott@neighbours-inc.com

#036: Non-Medical Approaches to Well-Being, with Janet Klees

Discussing bio medical (non-medical) approaches to well-being for people with disabilities. This week’s podcast/ blog is a rebroadcast from Episode #026 with Janet Klees.

Janet Klees has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Until recently, she has been coordinator with the family-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. Currently, Janet is the Executive Director with a family support organization, the Durham Association for Family Respite Services.

  

Bio- Medical (non-medical) Approaches:

 The Durham Association for Family Respite Services has started a family group to discuss and learn about the impacts of diet, exercise, and mindfulness as alternatives to medication and behaviour management approaches. 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 behaviours that a person is experiencing. Peter Marks, Founder and Director of the Centre for Conscious Care, got Janet and these families thinking about these integrative approaches and you can find additional resources on his website.

  

Paraphrasing from the podcast, Janet shares:

One of the things we have started to learn about it diet. Families have started to experiment with eliminating or reducing gluten and dairy from their child’s diet, and they are sharing the results with other parents. There is a lot of research about gluten and ADS, but this isn’t just for people with ADS, it is helping people with other developmental disabilities.

 

(Note: In a conversation with Dr. Jennifer Forristal N.D. at a Waterloo Region Family Network Conference, Dr. Jen shared that this type of dietary change can be overwhelming for a family pull off. Dr. Jen shared with the group, to start small - start with trying no gluten or dairy for just one week. With a one week trial you can notice changes, and if those benefits are great enough you can decide to continue, or not.)

 

Once people’s diets are in order we can start to look at other things. One of these things is sensory integration. A person might either be over stimulated or under stimulated. There are techniques, such as using a small trampoline for 20 minutes, that are effective in helping people be calm or focus.

 

People are also interested in medical marijuana, and the potential benefits that it may have - especially with epilepsy. We have some families experimenting with this under the care of doctors.

 

We are also looking at mindfulness and bring mindfulness practices to people with disabilities. However, it isn’t just thinking about the person with the disability, it is thinking about the team that supports them. The person supporting needs to be calm and present in the moment.

 

If we start at a biological end then we might be able to get to the root cause of the symptoms someone is experiencing. Naturopathic doctors can be a good resource to start to think this way, make sure to find a naturopath that is familiar with developmental disabilities.

 

Peter Marks, Director of the Centre for Conscious Care, is joining us on an upcoming episode to teach us more about these approaches. Check out the Conscious Care website or you can pick up the book on Conscious Care from Inclusion Press to learn more.

 

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:

Peter Marks: Conscious Care Website- http://centreforconsciouscare.ca/

Book: Conscious Care and Support  for individuals with Autism & Other Developmental Disabilities: Balancing Body, Brain & Being by Peter Marks and Gareth Marks 

Learning events In Durham Region: Click Here

Contact Janet Klees: janet@legacies.ca

 

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

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

 

Click Here To Listen on iTunes

#035: Thinking Differently About Disability, with David Hasbury

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

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

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

 

Why Are Disability Services The Way They Are?

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

 

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

 

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

 

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

 

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

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

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

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

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

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

 

Shifting To A More Person-Centered Approach.

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

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

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

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

  

How Do We Make The Person-Centered Shift?

 

Individuals & Families:

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

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

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

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

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

 

Government and Service Organizations:

We need to think about people as individuals.

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

 

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

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

 

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

 

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

 

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

 

Love & Respect,

Eric

 

Resources:

Website: Neighbours-international.com

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

 

 

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

 

 

 

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

 

Click Here To Listen on iTunes

#033: Foster Family Care in Geel Belgium, with Toni Smit

Learn how the OPZ family care system works, and hear Toni Smit's foster family experience. Also, hear the benefits and drawbacks of being a foster family.

 

Geel Belgium and OPZ Family Care:

 The family care system in Geel Belgium evolved in the 1300's from the local legend for St. Dymphna. It was thought that St. Dymphna could cure any illness, and many people traveled to Geel to be cured, and ended up in the care of the church. When there was no more room left in the church families in Geel began caring for the ill. (For more on the Legend of St. Dymphna, listen to Episode #019 with Jackie Goldstein.) Today, the system provides formalized public psychiatric care and is called OPZ.

On the podcast Toni shares:

The OPZ patients can become boarders with foster families, and they have a 6 week orientation period to see how a the boarder adjusts to live with a foster family. If they do well in an orientation home then the OPZ tries to find a foster family. If a foster family is found, the boarder and foster family have the opportunity to get to know each other for a few days.

 “You try to receive boarders into your family as you would your son or daughter. The idea is to give people a real home for the long term.”

Toni and her husband consider her boarders her step sons and they integrate their boarders completely into the family, and the neighbourhood.

Over the last 20 years, they’ve had 4 boarders, and they have stayed as long as they wanted. Their current boarder, Luke, has lived with Toni and her husband for the last 14 years.

 

Why did you become a foster family? 

Toni Shares:

“I’ve always been a foster mother.”

There has always been other family members living with Toni and her partner. When Toni eventually settled in Geel her 84-year-old neighbour had a boarder from the OPZ. The neighbour couldn’t support the boarder anymore, and eventually the boarder ended up living with Toni and her husband. This was 20 years ago, and at the time there were 3,000 boarders living with families, and now there are only 300.

 

Why is there a decline in boarders?

Toni Shares:

"The modern way of life. The man and the woman of the household are working. 20 years ago, there were a lot of farms and often the woman stayed at home. The combination of someone always being home, and the need for help to do the work on the farm created this opportunity that was mutually beneficial. Many younger families do not even know about the OPZ, and if they do they are likely both working, and it might not make sense for them. There are also more care possibilities now that give people more choice on where they can live."

 

 

What are the benefits of being a foster family?

 Toni shares:

 “Love”

It gives Toni and her husband a lot of joy and happiness. There is always someone home and it helps to give them a cozy home. It gives Toni someone to talk to, and to take care of. It is also a gratifying experience seeing the boarder grow and take on a lot more then they use to.

Toni also shares that you start thinking about life completely differently.

 "Mental illness is not a contagious disease, it is an illness and it can happen to anyone. My son had an accident and now he is mentally ill. He has changed completely, and has a completely different character and you have to get used to those things."

 

 

Why shouldn't someone become a foster family?

Toni is very insistent that families should not take in a boarder as a financial solution. This is the wrong reason to take in a boarder. You do receive money for the boarder, but it doesn’t cover the costs that you have.

Also, Toni shares, "Don’t do it if you can’t accept them as part of the family."

 

 

What I took away from this conversation with Toni is that, being an relationship with her boarders has given her life meaning in a way that she wouldn't get any other way. I thank Toni for coming on the podcast and sharing her life experiences as a foster family!

 

Love & Respect,

Eric

 

 

Resources:

Email Toni for a conversation: toni120@.com

 

 

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

#032: Siblings and The Power of 'Why Not?', with Melissa Janson

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!

 Click Here To Listen on iTunes

#031: Innovative Ideas and Mindsets to Housing, with Jessica Cave of Bridges to Belonging

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

• Affordability of housing and supports

• Long waitlists for subsidized housing

• Long waitlists for supports

 

The Successes

• Tapping into the network of family and friends to access community resources.

• Creatively reducing costs with roommates.

• 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:

Website

Facebook

Twitter

 

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

#030: Creating a Secure Future, with Brendon Pooran

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!

 

Click Here To Listen on iTunes

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

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

 

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

 

 

 

Bill Hiltz’s Story

 

Paraphrasing from the Podcast Joyce and Arn share:

 

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

 

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

 

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

 

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

 

 

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

 

 

Start with the Assumption of Capability

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

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

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

Always start by holding people capable, disability or not!

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

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

 

 

Our Fear of ‘Different’

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

 

It was my own fear.

 

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

 

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

 

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

 

  

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

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

1)  Be patient

2) Be sincere

3) Ask how to best communicate with the person

 

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

 

  

Bill Hiltz’s Advocacy Work

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

 

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

 

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

 

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

  

 

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

 

UNDERSTANDING PEOPLE 

 

A SET OF STANDARDS BY WHICH TO JUDGE 

TO THEIR FRIENDS, THEY GIVE A NUDGE 

WHEN THEY SEE ME COME THEIR WAY, 

THEY STOP AND WALK THE OTHER WAY 

OR EVEN WORSE, THEY STOP AND STARE 

AS IF I'M STUPID AND UNAWARE. 

IF ONLY THEY COULD KNOW, THAT I CARE; 

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

I FEEL THE VERY SAME AS OTHERS DO, 

THEY SHOULD TRY AND WALK IN MY SHOE. 

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

WAS GIVEN TO YOU BROKEN-DOWN. 

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

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

WITH SOME TIME AND SPECIAL GUIDANCE; 

WE CAN HAVE A GREAT ALLIANCE. 

FOR AN HOUR, OR FOR A DAY; 

WE ALL NEED FRIENDS ALONG THE WAY. 

SO WHEN YOU SEE ME COME ALONG 

TRY NOT TO FOCUS ON WHAT IS WRONG; 

I AM A PERSON JUST LIKE YOU, 

WHO NEEDS AND DESERVES A GOOD FRIEND TOO. 

JUST WALK BESIDE ME STRAIGHT AND TALL 

AND BE THE FRIEND THAT I CAN CALL 

WHEN I AM LONELY AND AFRAID. 

JUST REMEMBER WHAT I'VE SAID: 

ALL YOU NEED IS TO UNDERSTAND; 

DO NOT JUDGE JUST TAKE MY HAND. 

 

- Bill Hiltz 

1998 

 

 

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

 

Love & Respect,

Eric

 

Resources:

 

Walk a Mile in my Shoe: Video: Click Here

 

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

 

 

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

 

 

 

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

 

Click Here To Listen on iTunes

#028: Self-Care and Parenting, with Ann Douglas

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!

 

Click Here To Listen on iTunes

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

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

 

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

 

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

 

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

 

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

 

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

 

 The Culture of Possibility:

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

 

Planning Enables Possibility:

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

 

3 Things to Consider When Starting Your Planning: 

On the Podcast Jeff shares:

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

 

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

 

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

 

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

 

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

 

Love & Respect,

Eric

 

Resources:

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

Ontario Independent Facilitation Network (OIFN) Website: Click Here 

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

Contact Jeff Dobbin: jdobbin@p4p.ca

 

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

 

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

 

Click Here To Listen on iTunes

 

#023: Michael Mainland's Story of Building an Ordinary Life, with Alice Mainland

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:

 

1. 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.

2. 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.

3. Opportunities to show off his skills. Michael loves to show off what he is good at from work to his recreation of horseback riding.

4. Proloquo2Go.  Michael is non-verbal the Pro lo to go app on his iPod empowers Michael to express himself more fully with others. 

5. 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!

 

Click Here To Listen on iTunes

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

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

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

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

  

The Story of Rougemount and Deohaeko

 Paraphrasing from the podcast Janet shares:

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

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

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

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

  

Intentional Community

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

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

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

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

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

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

 

Lessons from Deohaeko

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

*As described by Janet Klees on the podcast

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

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

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

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

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

 

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

  

Creating Housing Solutions Today

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

Janet shares:

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

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

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

 

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

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

2. Most housing challenges are affordability, not disability.

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

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

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

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

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

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

  

The Key Takeaways for me are:

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

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

 3. Housing and support are best viewed as separate.

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

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

 

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

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

Love & Respect,

Eric

 

Resources:

 

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

"We come bearing gifts" by Janet Klees 

"Our Presence has roots" by Janet Klees

 

Learn more about Deohaeko: Click Here  

Learning events In Durham Region: Click Here 

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

Contact Janet Klees: janet@legacies.ca

 

  

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

 

  

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

 

Click Here To Listen on iTunes

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

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

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

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

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

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

 

How to contact Helen Ries:

Website: helenries.ca

Website: gifts-assets.ca

Contact Helen: helen.ries@gmail.com

Location: Ottawa, Ontario, Canada

 

 

 

Resources:

Ontario Independent Facilitation Network OIFN.ca

Planned Lifetime Advocacy Network (PLAN) Click Here 

P4P Click Here

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

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

 

Facebook Groups for Siblings 

Canada - Click Here

USA - Click Here

 

Love & Respect,

Eric

 

 

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

 

#007 - Social Enterprise that is Empowering Growth and Inclusion, with Karen Chambers

Social Enterprise that is Empowering Growth and Inclusion, with Karen Chambers of Bob Rumball Associations for the Deaf

 

What you will learn in this Episode:

- Discover the Bob Rumball Associations for the Deaf

- Learn tools to communicate with a person who is deaf

- Learn Why Bob Rumball started a social enterprise

- Learn how social enterprise is empowering growth of individuals with disability, and fostering a more inclusive community.

- Get tips on starting a social enterprise

 

 

How to contact the Bob Rumball team:

Website: www.bobrumball.org

Contact: Click here

Phone: 905-878-4932

Location: Milton, Toronto, Parry Sound, Barrie - Ontario, Canada

 

Resources:

 

Spread the Sign App

 

Google Play: Click here

 

iPhone: Click here

 

 

Love & Respect,

Eric