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Empowering people with disabilities to live an incredible ordinary life.
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Monday Nov 12, 2018
Monday Nov 12, 2018
Joe Dale and I explore the untapped labour pool of people with disabilities, uncover the benefits of employing people with disabilities, and discuss approaches people with disabilities can take to gain employment.
Today businesses are asking, ‘Where do we find good people?’, and people with disabilities are asking ‘Where do I get a job?’. This podcast/ blog with Joe Dale, Executive Director of the Ontario Disability Employment Network (ODEN), explores these questions.
Joe has worked in the field of disability for over 35 years and spent much of that time addressing issues related to employment for people with disabilities. He is an internationally renowned speaker, speaking to business, governments, and not-for-profits on the issue of strategic engagement of people with disabilities in the workforce.
The Ontario Disability Employment Network (ODEN)
ODEN is a professional body of employment service providers united to increase employment opportunities for people who have a disability. They have over 110-member agencies, all in the business of helping people with a disability get into the workforce.
ODEN focuses on 4 core areas:
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Engaging and educating businesses on hiring people with a disability. They also support businesses to develop successful hiring practices.
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Supporting disability employment agencies with training that builds their capacities and skills.
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Advocating on employment for people with a disability to the provincial and federal governments.
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Engaging and educating other stakeholders that prepare people with disabilities for the workforce, including school boards and family groups.
The Employment Landscape
Paraphrasing from the podcast, Joe shares:
“There are a lot of barriers for people with disability to enter the workforce. However, there has been a drastic change in the last couple of years. Businesses are now moving from awareness of the benefits people with a disability can provide to their business, to how do we employ people with disabilities. And, thinking about what does it look like in our workplace?
We have done a lot of awareness over the last 10 years and this is starting to pay off. Businesses are also challenged with the labour shortages, so businesses are now looking at what was once considered non-traditional labour sources.”
Currently the unemployment rate is 5.5% in Canada, but what does that look like for people with disabilities?
Paraphrasing from the podcast, Joe shares:
“Statistics Canada reported that 49% of people with disability are not in labour market. This doesn’t include people who have never had a job or have given up on trying to find a job. For the 51% of people in the labour market, we are seeing anywhere between 16 – 25% employment rate. From this, we can assume people with a disability that are not working in Canada is around 70%.
In the US, they do their research differently, they show about 18% of people with a disability are working.”
What Do Businesses Need to Know About Disability?
Paraphrasing from the podcast, Joe shares:
“Businesses don’t know what they don’t know. Businesses aren’t fully aware of disability as a demographic. We try to illustrate what disability looks like in their community.
16% of Canadians identify that they have a disability across Canada. This is a very large demographic. If you add family and loved ones of those people, 53% of Canadian’s are impacted by disability. These people have a very strong connection to disability.
What would this look like in your place of business? We do this through case studies and by breaking down the myths and stereotypes..
We are shifting mindsets away from charity and pity, a mindset of contribution. This is what businesses need to see to get them to buy in and employ people with a disability in a sustainable way."
Learn can learn more about the Myths to employing people with a disability in this podcast/ blog with Laura McKeen.
What is the business case to employ people with a disability?
Paraphrasing from the podcast, Joe Shares the following case studies:
Case Study 1: Walgreens
Walgreens is a large pharmacy retailer in the United States that has inclusive hiring practices. In 2006, they opened a new distribution center in South Carolina. When staffing this distribution centre they started with the goal of staffing 1/3 of this workforce with people that have a disability. In the end, they hired 40% of their workforce with people that have a disability. At the end of the first year, this distribution centre was the most productive centre for all of Walgreens in the US.
A year later they opened a distribution centre in Connecticut and they went in with the same mindset and hired 45% of people with disability. It opened in 2007 and has had the highest production of all Walgreens distribution centers every year since it opened. They have a 63% reduction in employee costs! Lower absenteeism, lower turnover, and fewer workplace accidents. What they are seeing is higher productivity at lower cost. This equates to profits.
More on the Walgreens Case Study. Click Here
Case Study 2: Mark Wafer, Tim Hortons
Mark Wafer owed 6 Tim Horton’s coffee shops in the Greater Toronto Area, in Ontario Canada. 15% -20% of their staff was people who had a disability. Employees with disabilities had an 87% higher attendance rating, and no work injury claims. Mark’s coffee shops had a turnover of 38% in an industry where the average was 110%. At $4,000 per new hire, there was a significant reduction in costs. His employees with a disability had almost 0% turn over, and employees without disabilities had a 55% turn over, which was still half of the industry average. He put it down for employees being engaged because he is an inclusive employer.
These costs savings are often offsetting the costs of a little bit slower production or the cost of accommodations.
Additionally, prior to Mark selling his business, his coffee shops ranked #1, #2, #3, #4, #5, and #6 in key sales/ profitability indicators among 500 Tim Hortons coffee shops in Central Ontario.
More on Tim Hortons Case Study. Click Here
Additionally, Joe shares:
“Many businesses are contacting ODEN today to learn about how to employ people with disabilities. We would like to get to 16 -20% of employees in a workplace be people with a disability.
We also see the growth rate for people with a disability that get into the workplace their growth rate is phenomenal. Within 2 or 3 weeks they can become a different person and can exceed expectations. This is due to the opportunity, environment, and role modelling.”
How can families and agencies help people with disabilities to gain employment?
Paraphrasing from the podcast, Joe shares:
“It’s really about raising expectations. Overall our expectations of people with a disability are too low. We need to identify the goal that we have for people that have a disability. If the goal is for the person with the disability to have a job, we need to create a different path. We need to change the educational system to support this goal.
For families, if employment is a goal what happens at home has to change. We need to ask questions like, ‘What do you want to be when you grow up?’ and we need to ask ‘Do we give them chores?’. We need to raise expectations, have high goals, and change the path to support these goals.”
I agree with Joe, we need to think bigger and get out of the disability box. This requires a switch from deficits thinking to contribution thinking, and we need to be a champion for that individual. Once you have people holding low expectations of you, you live up to those low expectations. We live up to expectations, so hold high expectations and be a champion for people with disabilities by upholding their dreams and influencing others to do the same.
Joe shares:
“There is research out of the US that shows the indicators of labour market attachment for people with severe disabilities are:
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A single paid job while in high school
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Family members and others around that have high expectations
This leads to asking the question, ‘How do we mirror the experiences for people with disabilities the same as those around them?’ Peers and siblings. This includes responsibilities, chores, and part-time jobs. This helps the person to also learn what they like, what they don’t like.”
Learned Helplessness
What I have observed in my work is that parents and supporters are trying to be helpful by doing things for the person with a disability, but by doing this it creates dependencies. It teaches the person with the disability that they can’t do things. Now when that person with a disability is asked to do something they have learned that they ‘can’t’ do the task, even when they are in a new environment. In positive psychology, this behavior is called Learned Helplessness. However, this can be changed with learned optimism. By the way, my family has been caught in the learned helplessness trap. I am not judging here, simply pointing out my observations.
Work or Activities?
Paraphrasing from the podcast, Joe shares:
“It is a challenge when activities, like bowling or swimming, get in the way of the work opportunity. Generally, we don’t do these things instead of work. This is a values proposition that needs to be considered by families. The more conditions we place on work, the more difficult engaging in work becomes.”
Insight: Put the job first, remove the conditions on the employment.
What suggestions do you have for people with disabilities that are 25 to 45 years old, and have never been in the job market?
Joe shares:
“It might mean backing up a bit and starting with a part-time job that many of us would have had while in school. Such as at McDonald's. But don’t let the progress start there. We need to start creating that path.
The more experiences a person has had the better their decision making becomes on what they would like to do 1 to 2 years from now or even tomorrow.”
Fair Pay for People with Disabilities
Joe shares:
“Working for free, or saying the person doesn’t need equal pay is a very bad attitude. Society values people that work, pay taxes and contribute, and much more so than people that live off the tax system. To see someone contributing to the tax system in your community brings value to that person.
It is important for peers and supervisors to see that person as valuable. If two people are working side by side and one person is getting paid full wage, and the other person is receiving less than full wage, it tells the rest of the world that that person is not as valuable as the person making full wage beside them. That is a real damaging long-term scenario. The perception is that the person with a disability as being seen as valued is critical. I fight against anything that looks like less than a fair wage. If the perception is that the person is less valuable, who is the person that is going to be let go in an economic downturn? The person that is seen as less valued.
Also, It is a myth that by working the person will earn less money with the Ontario Disability Support Program (ODSP). No matter what the person earns they will always have more money in their pocket at the end of the day. They never lose never money by working. It is a fallacy that people will have less money if they work."
I agree with Joe’s perspective on fair wage. Additionally, consider the person with a disability that is receiving less than an equal wage. If that person is perceived by others as not valued, then they will not feel valued themselves. If I am not feeling valued I am not going to be excited about going to work.
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
You can also support this work by subscribing. This podcast and blog is supported completely by listeners and readers like you. Thank you to those that have supported by subscribing!
Love & Respect,
Eric Goll
Resources:
ODEN Website: Odenetwork.com
Tim Hortons Case Study: Click Here
Walgreens Case Study: Click Here
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Wednesday Oct 10, 2018
Wednesday Oct 10, 2018
Learn from world class experts on housing for people with developmental disability.
I’m excited to bring you this podcast/ blog episode on the best of creating a home for people with intellectual/ developmental disabilities (IDD). In this episode, I have compiled audio clips that provide insights from 9 interviews I’ve completed with guests on creating a home for people with disabilities, along with my insights as a family coach. My desire to share this with you also comes from the experience of supporting my sister (Sarah) to create a home of her own over the last year. On July 4th 2018, Sarah moved out of our parent’s home and became roommates with me. This is Sarah’s first time living in a home of her own. There has been many events along the way that have come with incredible growth for everyone in our family, and support network.
9 Insights to Creating a Home Episode (I.e. Best of Home Episode)
This episode is a collection of insights shared by 9 guests who I consider as experts in the area of creating a home. Each guest has either directly been involved in creating a home for people with disabilities and/ or has evaluated housing services for people with disabilities. I’ve constructed this episode in a way that shares what I believe will lead to the best outcomes for people with disabilities and their families. You may agree or disagree with the perspectives shared in this episode, however, I invite you to consider these perspectives to determine what is true for you.
You will notice that I am using the language creating a home vs housing. I do this because housing refers to the physical building, and the physical building is only one component of what must be considered when creating a home for a person with a disability. When creating a home we must also consider the person’s other needs; their supports, their relationships, and what they will be doing once they are living in the space, etc..
Creating Your Home Workbook (Free)
Additionally, I have updated the ‘Creating Your Home Workbook’, to include these insights and perspectives. The original workbook was downloaded over 100 times, and I’ve sent the updated version to those of you who have already downloaded the original workbook. This workbook is designed to guide your thinking to create the best home for an individual with a disability, and to encourage you to take the first steps to make this home a reality!
Claim your FREE 'Creating Your Home Workbook!
The 'Housing' Problem:
If you are reading this blog you intuitively know that there are many additional considerations for a person with an intellectual/ developmental disability (IDD) when creating a home. Supports that exist to help vary by jurisdiction globally. Where I live, in Ontario Canada there is what many would call a housing crisis. As of 2016, the Ontario Government Ministry of Community and Social Services was supporting approximately 18,000 people with a developmental disability in group homes and other supported living, and an additional 9,700 people were on a waiting list for residential supports. So, the reported demand for residential housing support is over 50% greater than the supply. The demand is likely higher than reported because it obviously doesn’t include people who have not registered for the list. Reference: (The Toronto Star, 2016)
In many areas around the world there are long waiting list for people with a developmental disability in search of government supported housing. As you continue to read, I am going to outline that government supported housing is actually not the optimal solution for an individual with an intellectual/ developmental disability (IDD) in the majority of cases. You are better off designing and creating an individualized home that meets the desires and needs of the individual, which provides them control over their life.
9 Insights on Creating a Home for a Person with a Disability
1) The individualized one person at a time option is the best option for people.
(Michael Kendrick (PhD) is a well-known international consultant in Human Services. Michael is involved in consulting, education and evaluative work with many governments, private agencies, advocacy groups, community organizations, universities and colleges across the globe.)
In episode #047 I ask guest Michael Kendrick, “Why is investment in group homes an outdated idea?”
In Summary Michael Answers:
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Group Homes are based on the assumption that people with disabilities should live together. We [everyone else] chose to live with people we are compatible with.
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Group homes are forced shared living, and this often creates a stressful living situation.
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Investment in group homes creates the idea that it is the only option for people.
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Individualized one person at a time is much better because it gives you much more choice.
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The group home option is no longer at the leading edge. It is a dying service model.
Many jurisdictions have a freeze on the growth of segregated living across the globe.
2) The people living in group homes want a home of their own.
(Lynne Seagle, CEO of Hope House Foundation, a not-for-profit organization started in 1964 by family members, whom had sons and daughters with developmental disabilities, in Virginia, USA.)
Paraphrasing from podcast episode #045 Lynne Seagle shares,
“…finding out people didn’t want to live in group homes started with a survey. The survey asked the question, ‘Does everyone like where they are living?’ Everyone said yes. It was odd to ask 120 some folks a personal question and get the same answer. We then re-worded the question to, ‘How do you want to live?’. And, the flood gates opened. People answered 1 of 3 ways, from most dominant to least; 1) I want a home of my own, 2) people wanted a job (most people were in day programs or workshops), and 3) friendship and romance.
Lynne continues, “We [Hope House] had defined excellence as meeting all the rules – [our] paperwork was clean, [we had] no employee grievances, well-kept homes, and low staff turnover. We were looked at as the model in Virginia, USA. BUT, when we gathered these themes [truths] we reviewed our program plans and not one program plan addressed these needs of people. This was a daunting realization for our organization.”
As I reflected on my conversations with Lynne Seagle and Michael Kendrick, I thought about what it would look and feel like to live in a group home. I would be forced to live with people that I don’t know, and many of my freedoms that I enjoy would be taken away. I wouldn't always be able to do what I want to do, when I want to do it. I’d lose control of who is entering my home. This sounds terrible, and it is. Now to help you think about this further, there are similarities between group home living and living in a nursing home, or retirement home. When you think about living in a nursing home or retirement home do you get excited about the experience?
An important point to make here is that it is the model and system of group living that is oppressing people, not the people working in these models. The people are typically some of the most kind and caring people in the world. It is the model and system we need to think differently about.
3) Creating a home is about building a life, the house is only part of the picture.
(Ron Pruessen, is a father to Caroline, who has a developmental disability, is a member of Opportunities Mississauga, and he is the Chair of the Ontario Developmental Services Housing Task Force. The Ontario Developmental Services Housing Task Force was given $3MM in annualized funding, which has funded 18 pilot projects from the 200 proposals submitted.)
In episode #016 I ask Ron Pruessen, “As father, someone that is involved with a family group, and the housing task force what have you learned along the journey about housing?”
Ron shares, “There has been a lot of learning and frustration. The Government [of Ontario] is not doing enough and has a limited menu of things that they are doing [in housing]. There are many great ideas at the grass roots level. The variety of ideas is enormous, people have been extremely creative in imaging their futures. Individuals have been doing the visioning, and they see the possibilities out there.”
[In my opinion, this highlights the importance of individual options.]
Ron shares, the most significant example of creativity he has seen is building partnerships. The community can provide the best solutions. Not just because you can mobilize financial resources, but also because you can develop a wealth of opportunities (educational, social, employment), and this is incredibly important. The house is an important part of the picture, but it isn't the whole solution. Community connections improve quality of life, but the government can't do this, we have to do this.
Ron shares important insights in episode #016, which I have summarized above. However, there is one point that we discussed in that I do not completely agree with, and I failed to address this point previously. Ron shares, “I think the assumption for many years is that this [housing for people with a disability] is a government responsibility. It is the equivalent saying people need health care, which is provincially funded in the province of Ontario…. It is the equivalent of what we do for senior citizens in providing pensions and support for housing opportunities. It is a government responsibility, there is no question about it, I would argue. And, I don’t think the government isn’t doing enough. But, it is also a community responsibility…. What the community can do will provide better solutions to the problems.”
I agree with Ron’s comments that many people do hold the assumption that ‘Housing’ for people with disabilities is a government responsibility. This is the mindset that many of us continue to hold and it is perpetuating the ‘crisis’ state many families find themselves in. I disagree that creating a home is fully a government responsibility. Here is the reason why... When we [families] hold the assumption that the government is responsible for housing for our loved one with an IDD we give away the power that we have. We can put ourselves in a helpless state, or victim state. When we have hold this mindset that the government is responsible we accept the menu of sub-optimal options that the government provides us, and this puts us at the mercy of long waitlists, in many jurisdictions. And, this is a waitlist for sub-optimal options! If we hold the mindset that the government is responsible for creating a home for our loved one we are at the mercy of the government, and we give up our control. The good news is that we can take our power back. If families are feeling like a victim of a ‘housing crisis’ [i.e. you are waiting for government solutions], I invite you to consider making a choice to become a creator and to take your power back. In other words, the idea here is an invitation to take an active role in creating a home, vs a passive role waiting for a sub-optimal government solution.
On the flip side of this point, I agree with Ron in that we need to keep advocating to the government that more funding is needed to support our families in implementing/ funding our one person at a time solutions to creating a home. I believe Universal Basic Income (UBI) is a possible solution to the poverty situation that many people with a disability face. A realization that I have come to is that, the government isn’t going to solve our problems, but they can be a part of the solution.
[If you want to learn more about UBI I recommend listing to Sam Harris’s interview with Andrew Yang on the Waking up Podcast.]
4) Give people their own front door, and separate housing and supports.
(Chris Woodhead is the Group Director of Housing and Business Development for Dimensions UK. Dimensions UK supports 5,000 with learning disabilities and autism spectrum disorder (ASD).)
In my interview with Chris, In episode #025, he shares, “Dimensions UK’s aspiration is for people to have their own front door. Not all of Dimensions UK’s accommodation is in line with this aspiration at this time. For example, some housing is larger scale accommodation with 10 people living in one large accommodation, but over time Dimensions UK looking to remodel for a smaller scale more personalized approach. Housing and support are generally separate. Dimensions holds a core value that where you live is important to quality of life (health and wellbeing), but people should be able to choose who supports them. You shouldn’t have to move if you are unhappy with your support. There is a delineation between the tenancy agreement and the support contract. We operate around choice and control. If we get their housing right, and we get their support right then we hope they will continue to choose us.”
Chris also shares the Activate Model they have been piloting, which considers 8 different domains in each person’s life; 1) Physical health and wellbeing, 2) Communication and social interaction, 3) The physical environment, 4) Skills, 5) Relationships, 6) Service Staff, 7) Service Management, 8) Wider organizations. [Again, the physical environment (the house) is just a component of the solution.] The early results of this model in practice resulted in a 60% reduction in challenging behaviour, and an increase in satisfaction for support staff. If you would like to learn more about the research visit the Dimensions UK website.
5) Housing is a Community Issue.
(Janet Klees has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Currently, Janet is the Executive Director Durham Region Family Resources and Supports. Janet is the author of three books which are directly rooted in her experience with families, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades).
In episode #022, Janet shares, "Housing is a community issue, not a disability issue. In our most recent housing project, we partnered with Brockville and District Association for Community Involvement on a housing project called, ‘Housing is a Community Issue’. We asked families who were interested in housing to join us in discovering housing solutions together and 35 families showed up. This is incredible because we told the families up front that we don’t have any money to give. It shows how understanding families are that they are going to be part of the solution. Even in this housing crisis, people are still finding housing. With our project, we are thinking about what are the ways that people are finding to build, buy, rent, and to figure out housing. Then asking, ‘why can't these ways fit families that are looking for housing.'
This is an affordability issue, not a disability issue. If people need renovations it is a cost issue. We need to ally ourselves with all the people that are struggling for housing. There are organizations like Habitat for Humanity, and Options for Homes that we can ally with. If the Ontario Ministry of Community and Social Services (MCSS) is involved in housing they build a service, not a home. Families only have to think about their own son or daughter and think about works best.”
An important observation from Janet, “The change comes when the family realizes that this is their issue to work on.”
7 recommendations from Durham Region Families for for all of us (Government, organizations, and families) to think about as we work toward creating a good life for people with disabilities.
1. Home, housing and support are 3 different things and must be thought of separately.
2. Most housing challenges are affordability, not disability.
3. People with disability contribute to their communities, they are not a burden.
4.Getting good housing and support doesn't mean taking away the individual’s control of their life.
5.Providing renovation dollars allows families to be creative with their current home today (stabilize current situation) and allows for flexible housing in the future.
6. Stop funding congregated mega projects for people with disabilities, and disabilities / seniors. Commit to typical housing options and neighbourhoods.
7. Where there are families that are willing to create a home in community the government needs to support with resources. These are cheapest, most effective models, and they are currently the least funded [in Ontario, Canada].
6) A coach or independent facilitator can support you to create and implement your vision for creating a home (and a life).
(Jessica Cave, Creative Housing Supports Coordinator at Bridges to Belonging in Kitchener, Ontario. Jessica supports people with developmental disabilities and their families who are looking to make the next move in their life.)
In episode #031, Jessica shares that she supports families by helping to figure out what is best for the individual. Her organization starts with the belief that people can live in the community, and that they have the resources and readiness to make it happen. In other words, they start from a place of capability and abundance, which fuels us as creators!
Jessica takes a person directed approach and works directly with families in the Waterloo Region helping them to take this new mindset, and she facilitates the family through creating their vision for housing. Once the vision is created Jessica helps the family to think about what resources the family already has, such as, friends, community, support, and financial. Then they will think about and take the next steps are to bring the plan to life!
7) Creating a Vision: The Best Home for the Individual
(Marg McLean, Executive Director of Community Living St. Marys, and her team have been helping people with disabilities create their home, and support solutions since the 1980's when people were leaving institutions.)
In episode #013, I ask Marg “When thinking about creating a home, what should families be considering?”
Marg shares that people are going on the waitlist [for housing in Ontario, Canada] without thinking, talking, and planning what an ideal home looks like for them. (Note: This is exactly what my family did at the start of our housing search for my sister. Your family is not alone if this is the situation you are in currently.) What works well is for families to come up with a vision of what would be a good home in community.
Marg provides 4 guiding questions to begin your thinking on creating a vision for home:
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Where do you want to live?
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What kind of building do you want to live in?
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Who do you want to live with?
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What supports will be needed for your home?
[Note: the free ‘Creating Your Home Workbook’ includes these questions along with other questions and exercises to guide you in creating your vision for your home.]
Also, in Episode #013 Marg shares the story of 3 individuals that her organization supported to create their home. I also share my previous experience of living with my friend, who has a disability. These stories might just give you some ideas and I recommend you listen to this episode!
8) No one can tell you the right answer. You have to figure it out for yourself!
(Keenan Wellar is the Co-leader of LiveWorkPlay, a developmental service agency that works to facilitate community connections and relationships in Ottawa, ON.)
In episode #017 Keenan shares his reply to families that ask him, “What should we do in housing?”
Keenan shares that this is a question is deeply personal, and it isn’t a question that he can directly answer for a question. So, when asked this question, Keenan takes a coach approach by asking a lot of questions in order to draw out the best answer for that family. A couple of questions that Keenan will ask are;
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Where do most citizens tend to live in your community?
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What are the barriers the barriers to living in 'ordinary' housing? Are they actually barriers?
Keenan also shares that he will guide families through a 'thought experiment' by considering what it would look and feel like to move in to an apartment, which is a typical first home for many of us moving out of our family home for the first time.
[This is included as an exercise in the free ‘Creating Your Home Workbook’]
9) Be a creator: Start conversations, build relationships, and uncover community resources.
(Alice Mainland is the mother to Michael Mainland, who has a developmental disability. Michael is 39 years old, has a home of his own, a job, and a life in community)
In episode #023 Alice Mainland shares the story of her family’s journey to create an ordinary life with her son Michael. What I am highlighting from my conversation with Alice, is the creator mindset that she brought to the challenges that her family faced.
In summary from my conversation with Alice, 2 months before her son with an intellectual/ developmental disability (IDD), Michael, graduated from high school, Alice realized they had a problem; there would be nothing for Michael once school ended, and one of his parents would have to stay home to support Michael. As a result, the family would drop down to a single income. Alice started making phone calls to various support agencies, local government, and basically anyone with a phone number that might be able to help. The people she called were willing to help! With the support of a few agencies the family was able to piece together support for Michael, which allowed the family to stay a two-income family. It was a patchwork, but it was a patchwork that worked because people wanted to help.”
Later in the podcast episode Alice shares, “At 29, Michael had the opportunity to move out of [his parents] home because of a conversation 4 -5 years earlier when I was searching for support for Michael.”
Alice shares, “You don’t know what resources are available to you until you ask. “
Resources:
Thursday Sep 13, 2018
Thursday Sep 13, 2018
Author and speaker, Donna Thomson, takes us on the journey of a caregiver.
In Episode #050, I had the pleasure of interviewing Donna Thomson and we dove into the topic of caregiving. Donna is an author and speaker on issues relating to family caregiving, disability and aging. She is a patient and family advisor on health research and policy. Donna teaches family caregivers how to advocate for care in hospital and in the community.
If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below or searching ‘Empowering Ability’ on your podcast player, such as, Apple Podcasts, Spotify, Google Play.
Before my interview with Donna I took the opportunity to read Donna’s first book, ‘The 4 Walls of my Freedom’, which really helped me to gain perspective on what it is be like to be a mother with a child that has medical needs. It gave me perspective on what it must have been like for my own mother, when faced with the medical challenges my sister experienced at a young age. Quoting Donna from her book, “Mothering a child with medical needs is a very public, but lonely endeavor.”
On the podcast I ask Donna, “Can you share your experience so that others listening can also understand your perspective? And, so other mothers maybe don’t feel so alone?
Paraphrasing from the podcast Donna shares, “My son, [Nicholas], has CP [cerebral palsy] and a complex disability. At 4 months [old] he was diagnosed, and it was like he became the property of health care and social care systems. We began to be assessed and I felt as though I was under a microscope. [I was] Grateful for the assistance because you feel like it is the key to the future success of your child, and you want to present as a competent parent. Then you learn when you present as a competent parent that’s reason for people to abandon you. If you seem to be doing well then people aren’t going to help you. In order to access the help you need at home you have to demonstrate failure as a parent. What do these assessments and scores about my baby say about me? Am I a success or failure as a parent? All of this brought the bond between my son and I closer and we would have very intimate moments when alone at home.”
I ask, “Do you feel that this pushed you into being a victim?”
In summary Donna replied, “Not exactly. We had to demonstrate to the system what our needs where, and to do that they had to show them that they were struggling.”
Finding Pleasure in Peeling the Potatoes:
In a previous conversation with Donna it came up that she had to find pleasure in peeling the potatoes and this connects directly to her book title ‘The Four Walls of My Freedom.’ On the podcast, I ask Donna, “Why do we need to find pleasure in peeling the potatoes? And, how do we do that?”
Paraphrasing from the podcast Donna shares, “I can’t leave my house, so how can I make a rich life of this? Watching the lady peeling the avocados next door through the window, [I admired] the way she was able to peel the avocado without breaking the skin was beautiful. I started thinking I can do that. Then I started thinking about how well I am peeling vegetables. It was sensual, secondly, I was feeding my children. I linked what I was doing with the purpose of what I was doing.
I started thinking about the tiniest things that I was doing as forms of meditation, and it made me happy. I wasn’t doing anything differently, I was simply looking at myself doing the jobs of feeding the kids, doing the laundry, and making the bed.
Locating the extraordinary in the ordinary. We have the benefit of the slow movement lived loud in our families. We do things more slowly, we are more contemplative, we do things more purposefully. There is opportunity in finding meaning and joy in the way we live.”
Everyone is a Caregiver.
Donna shares, “The word caregiver applies to everybody. At the end of the day we are talking about dependency needs met by someone else. A pet, a friend, we all look after each other even when we are perfectly healthy in the prime of our lives. You are not feeling good I will bring you over some soup. We don’t have anything in our society to say that caring for someone is okay. The pendulum has swung so far away from providing care [being accepted in our society].
In my first conversation with Donna, she helped me to realize that I am a caregiver. When I was honest with myself it was the truth, and it felt weird. My ego didn’t want to accept this language because of the societal stigmas that are attached to caregiving. At first, it made me feel weak. Upon reflection, and acceptance that I am a caregiver there is a strength that comes with being a caregiver. Caregiving is one of the most connected and real human experiences that we can have, it has been wired into our biology as we have evolved as an advanced species. As Donna shares, “Everyone is a caregiver.”
So I ask you, how are you a caregiver? I invite you to celebrate that you are a caregiver, and not to fight it or deny it. What are the benefits that caregiving brings into your life?
Donna's Life as an Activist:
Paraphrasing from the podcast Donna Shares, “My idea was do to a post mortem on our family experience and the support that we received, or did not receive, and to determine what was helpful and what was not helpful. I thought this would be useful for other families and policy makers. I became involved in inclusion. I became active in the family movement, and I became involved with the Ottawa affiliate for PLAN, which is all about citizenship.
I became aware of and met Indian economist, Amartya Sen, who developed ‘The Capability Approach’. The Capability Approach looks at how people can be supported by the community and the State so that they can have a life that they value. It is about individual choice and being supported to have a life that you value within circumstances of adversity. Sen was looking at extreme poverty in India, but I used this approach to look at my family.”
Donna used this approach in her book 'The 4 Walls of my Freedom’ looking at how people can make personal choices, express their personal values, and live in the community to do this. Donna and I further discuss inclusion, and I recommend you listen to this episode to hear these perspectives.
Donna's New Book:
I’m co-writing a new book with Dr Zackery White, a professor at Queens University in Charlotte North Carolina.
Donna shares, “Dr. Zackery White is writing about Caregiver identity and how it is so difficult to express the transformations that happen when giving high levels of care to someone. Lots of things grow and lots of things die when you become immersed in giving care to someone.
Giving people language to create the narrative to understand your life in the now.
My part of the book is the what’s next. What can you do to be an advocate and take action; personal support networks, what are the assets in your community [asset based community development], and online tools including support groups. These are actions you can take to thrive in situations of adversity. It will be titled something like ‘Transformations in Caregiving’ ”.
I thank Donna for coming on the podcast and sharing her deeply personal experiences, and her insights on caregiving. Thank you for doing the work you do Donna!
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
Love & Respect,
Eric Goll
Resources:
Donna's Blog: The Caregivers' Living Room www.donnathomson.com
Book ‘The 4 Walls of my Freedom’– Available at any major book seller.
Facebook Group - The caregivers living room
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
Tags:
#Caregiving
#Donna Thompson
#WeAreAllCaregivers
Thursday Aug 23, 2018
Thursday Aug 23, 2018
Dr. Yona Lunsky discusses state of mental health and developmental disability, how to notice mental health challenges, and different treatments.
In this episode, I welcome Dr. Yona Lunsky on to the podcast to talk about developmental disability (DD) and Mental Health. Dr. Yona Lunsky is Director of the Azriei Centre for Adult Neurodevelopmental Disabilities and Mental Health, and Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at CAMH. She is Professor and Developmental Disabilities Lead in the Department of Psychiatry at the University of Toronto and Adjunct Scientist at the Institute for Clinical Evaluative Sciences (ICES). In this episode we discuss Dr. Lunsky’s journey into the field of mental health and developmental disability (DD), the state of mental health in the developmental disability community, how to notice mental health challenges, and the different treatment options available.
Below is a summary of some of the highlights from my conversation with Dr. Yona Lunsky. If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below, or searching ‘Empowering Ability’ on your podcast player, such as, Apple Podcasts, Spotify, Google Play.
On the podcast, Yona shares that she has an older sister who has a DD, and she tells us about her family experience. She also shares what led her down her career path to support people with developmental disabilities experiencing mental health challenges. Take a listen to the podcast to hear more of Yona’s Journey.
Why should we be talking about health in the Developmental Disability (DD) community?
Paraphrasing from the podcast, Yona shares, “When we are healthy we get to enjoy our lives. When we are unhealthy it restricts us; work, where we can live, how much money it costs day-to-day [living expenses], and the activities we can do. We know people with DDs are less healthy, and have more health problems than people that don’t have DDs. There are lots of reasons why they [People with a DD] are less healthy. It isn’t necessarily the disability, the disability itself is not a sickness, but how they manage their health, and the barriers that come up for people with DDs can impact their health.”
Mental Health in the DD community.
Yona shares, “The likelihood of having a mental illness is much greater for a person with a DD than without. In the general population 1 in 5 people experience mental health challenges. Through H-CARDD we looked at the number of people under 65 [years of age] with a DD that were given a psychiatric diagnosis over a two year period, and found it was 2 in 5 people. These problems are more common for people with DD, and they are less likely to get the help that they need. People with a DD are less likely to understand their emotions, and [are less likely] to be able to put language to it. This puts them at a disadvantage.”
What Does Dual Diagnosis Mean?
Having a DD and also having a mental health problem at the same time.
Diagnostic Overshaddowing
Yona explains, “If someone with a DD presents with symptoms of depression, the clinician might but look at the person and say oh that is your disability, and miss that the depression is actually there, and it may go untreated.”
Why might mental health be a larger challenge for people with a DD?
Yona explains, “What makes us feel healthy? Are we engaged in meaningful activities?, Do we have strong friendships?, Are we included?, Do we have opportunities to contribute?. People with DD are at a disadvantage here and this all impacts mental health. If the person themself can’t recognize there is a problem, then it becomes up to others to recognize there is a problem and we are worse at recognizing there is a problem when someone has a DD. By the time we do notice, it can be pretty late in the game, and this makes it even more difficult to help them.”
I ask, so what are the antidotes to poor mental health?
Yona shares first there are things we can do to prevent mental health challenges:
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Things like bullying are clearly related to mental health, and we can give people skills so they know that to do in these situations.
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Building positive social relationships. These are reciprocal relationships and they are not stressful or demanding too much of you.
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Doing things that are meaningful and important for you.
Yona explains the importance of taking action on these prevention steps for young adults with a DD, “There are many people who have mental health issues who are hospitalized in young adulthood. I don’t think this is a coincidence that this happens since when you finish school your activities, your friends and the people who know you really change. Not having anything to do during the day, and watching tv in the basement, losing friends, failing because there isn’t the right supports, all of this impacts your mental health.”
How do we help someone that might be experiencing a mental health challenge?
Yona shares, “Be a detective and notice what has changed. What is different now than before and be able to provide examples in daily life. It is important to notice the change, and it is easier to treat when there is a small mental health issue emerging.”
Yona promotes using the ‘HELP’ model when examining an individual’s mental health.
Yona explains the model on the podcast:
H - Health. First we need to look at what is going on in terms of health that could have changed. Is there a physical change? One thing that looks like depression is hypothyroidism, but this has nothing to do with depression. Constipation is one of the biggest issues leading to aggregation and discomfort for people with DD. And, this is often missed because the person might not be able to put the language to it.
E - Environment. What is going on in the environment? What are the supports and expectations right now? Are things stressful? Too demanding? Are people expecting too little? Is there a good match between her situation, and what she feels she is able to do? If the match is poor than address it.
L - Life Events. What has happened in the past that might be contributing to this issue? Bullying, ostracized, loss (experiencing grief), etc..
P - Psychiatric. Once health, environment, and life events are examined - could it be depression or anxiety? Treatment for these mental illnesses could include engaging in activity, seeing a counselor, medication, etc.
Families can use this model in order before going to get help from a medical provider, and families can use this model with their mental health professional.
Treatment with Medication:
Paraphrasing from the podcast Yona shares:
“The research shows that the likelihood of being prescribed several medications at the same time is not small [for people with a DD]. These medications interact with each other, and cause other problems. These medications can help, but they can also harm.
In Ontario Canada, medications are paid for (antidepressants, etc) under the disability program. But, other services such as psychotherapy are not covered. The likelihood of fulfilling prescriptions are high, and the most commonly prescribed drug to people with DD are not for cholesterol, diabetes, or asthma, they are for psychiatric issues. The most commonly prescribed drug are antipsychotics. These are pretty heavy duty drugs which require a lot of monitoring.
If doctor prescribed medication to me, I would go on the computer and look at it, get a print out from the pharmacy, I would look at the side effects, and tell the doctor right away if I was noticing any of them. [However,] people with DD aren’t always able to notice the side effects, or to understand why they are taking the medication.”
** Disclaimer: Do not just stop taking any medication that your doctor may have prescribed to you. Let this be a prompt to you to have a conversation with your doctor about your experience using your medication(s).
Let’s Talk About Mental Health
Yona’s final message is, “It is important to talk about it [mental health]. If we don’t talk about it we don’t solve anything by avoiding the problems. Mental health is just as important as any physical aspect of our health.”
On the podcast we discuss some practical ways on how to start the conversation on mental health. Take a listen!
If you received value from reading this blog or listening to this podcast episode, consider sharing it with someone else you feel would benefit. Coming soon there will be a way for you, or your organization, to contribute to this work. Stay tuned for the details.
Love & Respect,
Eric Goll
Resources:
- Talk to Dr. Yona Lunsky on Twitter @yonalunsky
- H-CARDD Health Tools for people with disabilities and caregivers
- More on The HELP model
- Dual diagnosis resources from CAMH
- A Family guide to dual diagnosis
- Video of Dr. Yona Lunsky discussing the HELP ideas
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Jul 31, 2018
Tuesday Jul 31, 2018
Ted Kuntz shares his journey of personal transformation as he realized the who he wanted to be in the world with his son Joshua and with others.
Ted Kuntz is a gifted psychotherapist and the author of the best-selling books, Peace Begins With Me and 8 Weeks to A Better Relationship. Ted has a Master's Degree in Counseling Psychology and more than 25 years experience as a clinician and a consultant. Much of Ted’s wisdom has come from his personal journey as the father of a child with severe disabilities. Ted's journey with his son Joshua taught him how to make peace with life and to take full advantage of the gifts and opportunities life offers.
Below is a summary of some of the highlights from my conversation with Ted. If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below, or searching ‘Empowering Ability’ on your podcast player, such as, Apple Podcasts, Spotify, Google Play.
I was fortunate to meet Ted at Partner’s for Planning’s Art of Resilience event this year, where I told Ted that I saw his talk the previous year at the Art of Belonging. It was one of the most inspiring talks that I’ve experienced, and Ted’s stories went straight to my heart. When I met Ted I shared my gratitude for his talk and vulnerability. I also shared that I had purchased his Book “Peace Begins with Me.” But embarrassingly, I hadn’t read it yet. I invited Ted to join me on the podcast, and I promised myself that I was going to read his book. We both kept our promise, and I am happy to bring you insights from Ted Kuntz!
Ted’s Journey (so far):
I’ve paraphrased Ted’s story from the podcast episode below and quoted some important conversations Ted shares.
“It has been a very challenging journey, but very rich journey. It took me while to embrace the rich journey. At 5 months of age my son Joshua was damaged by a vaccine shot and developed an uncontrollable seizing disorder resulting in a neurological injury. This injury resulted in 24-hour care for the rest of his life and significant disabilities. In February 2017, Joshua passed away.”
Josh transformed Ted as a father and human being in ways that Ted could have never imagined. I ask Ted on the podcast, “Are there moments or experiences of transformation that you can share with us?”
Ted shares that there are two experiences that he has identified as the most transformative, the first was when Ted went to see a Physic:
Ted asked the physic: “Will my son live?”
Physic: “Have no fear the son will outlive the father.”
Ted: “If my son will live, what will he be when he grows up?”
Physic “Your son will be what he already is, and that is a teacher.”
Ted didn’t understand how his son would be a teacher at first, but the words sat with him. What he came to realize is that Joshua was here to teach him about being a human being. He was here to teach acceptance, forgiveness, gratitude, and working through human challenges.
The second transformative experience that Ted shares on the podcast is his daily ritual with Joshua. When Ted pulled into the driveway after work he would see Joshua at the window saying, “Hi Dad”. When Joshua wasn’t at the window to greet Ted, Ted knew that Joshua wasn’t having a good day. On this day, Ted pulled into the driveway and he stood there looking at his son in joy, and a voice inside of Ted's head asked him this question, “When your son looks through the glass at you what does he see?”
Ted reflected on this powerful question, and Ted found the truth; Joshua sees a father who is angry, afraid, and a father who is rejecting his son. Ted committed that day to make peace with his situation, to accept it, to claim his joy, and to fall in love with the son he had. That was the day Ted’s life began to change.
Insights:
Eric shares, “For us to have these transformations we need to embrace these moments and let ourselves bring these questions and experiences into our consciousness to find our truth.”
Ted shares, “The transformation came out of an intense amount of suffering. Suffering can be one of the gateways to wisdom.”
I ask, “How do you shift out of suffering state to a state of joy?”
Ted replies, “Take responsibility for emotional, physical, mental, and spiritual state of being. We often give away our power – something else is responsible for our happiness, peace and joy. [For example,] I’ll be happy when Josh stops seizing. If I hold the story that my happiness is dependent on Joshua’s seizing stopping, then I couldn’t be happy. We need to claim ownership of our way of being in the world. I make me happy, I make me sad, I make me angry. Why would I make myself angry? It doesn’t serve me and the rest of humanity by staying in that [angry] state for a long period of time. I can release it any point.”
“I believe when we are operating at our highest potential as human beings that we are living life as creative beings. That we are creating the next moment. Unfortunately, I spent the first 45 years of my life as a reactive being.”
The Hidden Gifts of Disability
Ted Shares, “It [disability] challenges us in a way that we are forced to respond. At first it moved me to those darker places, but I’ve since learned there is a healing that comes about when there is an acceptance. I’ve chosen to live in peace and joy, because my son deserved that. It changed me as a father, a husband, a brother, a son. It made me a better person.”
Ted shares the story of Joshua’s grade 7 teacher:
Paraphrasing from the podcast Ted shares, “When Joshua was entering grade 7 there were 2 male teachers, who were athletes, selecting students for classes for the upcoming year. They decided to do a coin toss for who would pick first. The teacher who won the coin toss looked at the list of students and selected Joshua as the first pick. The other teacher asked, ‘Why Josh? He requires a wheel chair, has an uncontrolled seizure disorder, he has many other needs.’ The other teacher replies that he notices how the kids excitedly greeted Joshua in the morning, how they gently took off his coat, how the other kids altered the rules of the game so Joshua could play at recess, how the children where there laying on the mat with Joshua as he recovers from seizure. If Joshua is in my class it will make it a kinder and gentler place for everyone.”
This teacher helped Ted see Josh’s gifts. Ted was now able to look at Josh with a different set of eyes.
Ted shares, “Is the glass half full or half empty? It is both. Do I look at the full parts, or do I look at the empty parts? We have been socialized to believe that success looks a particular way. What people like Sarah [my sister] and Joshua do is that they remind us that there are other qualities to aspire to. There are things that I wasn’t going to learn from a book, I needed to be in relationship with a person more vulnerable that myself. This is a challenging journey. Let’s not just look at the parts that are difficult, lets also look at the gifts that can be realized out of this journey. Let’s not lose that opportunity to experience some significant transformation as a result of this life experience.”
To embrace this mindset that everybody is a gift to us, Ted plays a game with himself. He asks himself, ‘Who is going to show up today?’, and ‘What gift do they have for me?’, ‘What gift do I have for them?’. It forces him to appreciate everyone he interacts with.
In this episode, Ted also shares the native story of two wolves - the negative and positive wolves fighting our hearts, a tool to find more joy in our lives, and we discuss David Hawkings map of consciousness. Listen to the podcast for more on this!
Ted leaves us with this message to consider:
“Your way of being is actually more important than what you do. We would be better off if we made 'To Be:' lists every day, rather than 'To Do:' lists. Be gentle and kind to ourselves. We are on a journey of development. One of the things that I believe is that we don’t make mistakes, we actually make the best decision available to us at that moment with the information, skills, and knowledge that we have.”
I am grateful for the stories, insights and rich conversation Ted gave us.
If you received value from reading this blog or listening to this podcast episode, consider sharing it with someone else you feel would benefit. Coming soon there will be a way for you, or your organization, to contribute to this work. Stay tuned for the details.
Love & Respect,
Eric Goll
Resources:
Book: Peace Begins With Me
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
Thursday Jun 21, 2018
Thursday Jun 21, 2018
Learn how people with disabilities have lived, how they are living, and what we have learned from renowned consultant Michael Kendrick.
[4-minute read, 65-minute listen]
It is my pleasure to bring to you episode #047 with well-known international consultant in Human Services, Michael Kendrick PhD. Michael is involved in consulting, education and evaluative work with many governments, private agencies, advocacy groups, community organizations, universities and colleges across the globe. His work has involved training, evaluations, strategic planning, critical problem solving and confidential advice in the areas of mental health, disability and aging with an emphasis on persons requiring long term support. Michael has also developed and delivered the Optimal Individual Service Design (OISD) course that is the most in-depth leadership level educational program available internationally at present. [I’ve taken Michael’s OISD course, and I personally recommend it.]
In this episode of the Empowering Ability podcast Michael Kendrick answers the questions of; How have people with disabilities lived?, How are they living today?, and, What have we learned? Michael also shares how we need to have a Mindshift to higher expectations and normalization for people disabilities, and also how we need to have enlightened attentiveness when with people.
This blog paraphrases segments of my conversation with Michael, if you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below or searching ‘Empowering Ability’ on your podcast player, such as, iTunes, Spotify, Google Play, etc..
How have people with disabilities lived? and, How are they living today?
Paraphrasing from the podcast Michael shares:
People [with disabilities] have lived under different circumstances depending on what point in history, and in what culture. It is clear that people with disabilities have been treated as inferior or of less value. They have less capacity than their brothers or sisters and so on, and large numbers of people see people with disabilities as negative. This has led to people with disabilities being treated as less human. [For example] When getting medical procedures people [with disabilities] didn’t get the same anesthetic because they were different than everyone else. Also, there are people aborting people with disabilities – this is a very strong statement that they are unwanted and seen as a burden.
They [people with disabilities] live in a world of assumptions created by other people, which has big impacts on what kind of life they get to live. Everyone is subject to assumptions about them. There are two kinds assumptions; assumptions that liberate them and assumptions that hold them back. There was a time when it was believed people with disabilities couldn’t have regular jobs in the community, and now there are jurisdictions where 3 out of 4 people with disabilities have jobs in community. There was a time it was thought people with disabilities couldn’t be in regular classrooms. We see this now. In these examples a 'mindshift' has taken place. When we change our mind, we change our world. These mindsets have shifted in the last 2.5 generations, mostly in western societies, but this is moving into other societies.
This shift started in Sweden and Denmark with the Normalization principal; simply [the idea] where devalued people should be treated like everyone else. This was later translated into the theory of social role valorization. Life will get better for people with disabilities when we pay attention to what is going on in our minds and we shift our perceptions.
There is a belief that people would be better off segregated. If they are not with us, then they are somewhere else. They would be happier with their own kind, their own kind is other disabled people. Segregated sport, housing, schooling, work – there is segregated everything. We all need support to be successful, especially in new environments and social contexts.
It is a myth that people with disabilities can’t succeed in inclusive settings.
What have we learned?
We have been too conservative and cautious about the true potentials for people with disabilities. The pessimism [of others] is the problem, not the people with disabilities.
“If you treat an individual as he is, he will remain how he is. But if you treat him as if he were what he ought to be and could be, he will become what he ought to be and could be.”
- JOHANN WOLFGANG VON GOETHE
How do we hold higher expectations for people with disabilities?
If something benefits the rest of the world, it will benefit people with disabilities as well.
The application of this is called Culturally Valued Analogue (CVA). Simply, provide the same options that the rest of us have available to us. We should always do the normal thing and make it available to people with disabilities; the same activities and pastimes.
Include people with disabilities in new experiences and see what they might enjoy. Each should have the opportunity to build an interesting life for themselves. This is why the individualized option makes sense for people. This is why it is regressive to give people the same options [for example, group homes].
If people haven’t had opportunities, create new opportunities for that person. It is never too late. If people have become deprived, it is ‘overcomable’. The caution is to do it at the pace of the individual. An exploratory journey of life tasting. Even if you have been held back, you can make up for it.
Capacity for Decision Making
Some people think disability means they have no capacity at all. A truer appraisal of all of us is that we all lack capacities of one kind or another to some degree. People with disabilities certainly have capacity. They can make decisions on their own behalf, and is it better that they do that, because they will learn how to make good decisions and they will experience the consequences of the decisions that didn’t turn out to be so good - like everyone else. That is how you learn about decision making, is making decisions and practicing decision making. You can safeguard people and their vulnerabilities with decision making. They can pick their own supporters to help them with decisions in areas they feel they need support in making decisions.
People with disabilities rebel against not being able to be decision makers because they feel things are being done to them or on them, rather than with them. People are also easier to get along with when people [they] are decision makers because they don’t feel threatened, and that people [others] are there in a supportive way. Often behaviors will disappear.
There might be times were people with disabilities might not make good decisions. It would be neglectful not to support people, even when they don’t ask for it. The person might be unwilling to take support, but there are times where people can intervene, but it must be done respectfully. If people are concerned about us, they ought to be able to share their concerns about our decisions. You are not giving up the ability to influence, but you are giving up the control of the individual.
On the podcast, Michael discusses his views on circles of support, and how they can benefit an individual.
Why is investment in group homes an outdated idea?
In summary:
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It is based on the assumption that people with disabilities should live together. We [everyone else] chose to live with people we are compatible with.
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It is forced shared living.
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It creates the idea that it is the only option for people.
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There are much better options. Individualized one person at a time is much better because it gives you much more choice.
Many jurisdictions have a freeze on the growth of segregated living.
Michael’s Challenge To Everyone:
Give people with disabilities quality attention when you are with them. If you pay attention to people a lot of things about people and their lives will become more clear to you. Pay attention. Let us get instructed by them, simply by knowing the person and getting to know them better. Be really attentive to learning who they are and what their life is like. We don’t know where this will take us, but this will raise our consciousness and change us for the better. One great shortcoming we all have is that we don’t take people with disabilities seriously enough. I think the antidote to that is ‘enlightened attentiveness’ to the person and let it go where it goes. It is the most deeply respectful thing we can do, is to pay attention to a human being.
On the podcast, I give my perspective on how we can practice enlightened attentiveness and I share a story of my sister (Sarah) which is a good example of my 'mindshift' of doing WITH Sarah, instead of FOR Sarah. If you are interested in my insights take a listen to the podcast.
A big thank you to Michael Kendrick for coming on the podcast and sharing his wisdom. If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
Love & Respect,
Eric Goll
Resources:
Video Insights from Michael Kendrick: Click here for youtube videos
Wednesday Jun 06, 2018
Wednesday Jun 06, 2018
Brian shares his story of multiple health challenges and family adversities, and his insights about how we can re-write our story and take control of our lives.
In this episode, I have an engaging conversation with life coach, Brian Raymond King. Throughout Brian’s life he’s been a student of adversity as he experienced multiple health diagnosis including; cancer, ADHD and MS – as well as going through a divorce, and being a single parent to three children with ADHD. Brian shares his story and his insights about how we can re-write our story and take control of our lives.
On the podcast Brian shares:
“It’s a matter of doing what you can with what you’ve got. In situations like mine, you don’t just give up on life and let it pass you by because you can’t do everything each day that you can do on your best day. Some people use their best day as their standard, but that is ridiculous because life ebbs and flows. Depending on where I’m at that day, I think about what can do and I show up and do 100% at it.”
How have you bounced back from each challenge in your life?
Paraphrasing from the podcast, Brain Shares:
“With each new diagnosis there is that oh crud moment. This is usually brief. But, grumping and groaning will not change the situation. Then I shift to what do I need to know? What resources are available? What books do I need to read so I can manage this? At some point being resourceful just stuck.”
What tools do we have in our toolkit to be resilient?
Paraphrasing from the podcast, Brain Shares:
“First off, there is noise that makes it difficult to use the tools [we have]. One of the most annoying offenders is the ‘shoulds’. It [life] should be this way, or it should be that way. Once we stop ‘should’ing’ all over ourselves, we can take the first step toward a solution. Maybe you don’t know what the solution is yet, but you can start problem solving.”
What about when the problem seems so bad, or too much to handle?
Brian asks his coaching clients, “Do you honestly believe that? Or, is that honestly true?”
Brian helps his clients think through if they want to be a victim of the situation or if they want to be resourceful and take charge by asking questions like:
“Do you want to be helpless or do you want to be in charge? What can you be in charge of right now? You can be in charge of your thoughts.”
In my coaching practice I often ask clients, “What assumption are you making?” This is a powerful question to help us realize the stories we are creating based on incomplete information. (Also, our assumptions tend to lean toward being negative.)
Mindset vs Skillsets:
Paraphrasing from the podcast, Brain Shares:
“You can have the best tools in the world [skillsets], but if you don’t believe in yourself [mindsets] you might not even want to use those tools [skillsets].
Brian believes we must first develop or mindsets, which is comprised of our belief systems to get the most from our skillsets.
I ask Brian, How do we develop our mindsets and beliefs?
Brian shares, “Studying biographies. Don’t just listen to what they did, it is important to look at the decisions that they made, and the beliefs they hold. It is their beliefs and thoughts that led to their results. Try adapting to that belief for just a day - I am going to act as though this belief is true, and I am going to see the world through this lens. For example, you are a much different person if you believe that people are good at heart, vs people are just out there to screw you over. Things are first created in the mind, then in the real world.”
Who is one of your most influential mentors?
Brian shares, “Victor Frankl, who wrote 'Man’s Search for Meaning'. You can choose your attitude no matter your circumstances, and each person has the internal power to find inner meaning in any situation. He gave me perspective on how much I was self-pitying. I decided how I was going to face how I was going to feel and how I was going to choose to think.”
On the podcast, Brian discusses the concept of Hacking your Resiliency. Take a listen to the podcast to hear these valuable insights.
Brian leaves us with a challenge to consider, “Whenever a problem shows up one question you can ask yourself is, ‘What’s good about this?’ When you ask this question you immediately begin seeing what opportunities are available to you because that problem exists.
A big thank you to Brian for joining me on the podcast and sharing his insights! You can learn how to connect with Brian in the resources section below.
Love & Respect,
Eric Goll
Resources:
Brian's Website: Mindsetbeforeskillset.com
Connect with Brian on Facebook
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Wednesday May 23, 2018
Wednesday May 23, 2018
Guest Lynne Seagle shares how her organizaton was oppressing people with disabilities, and what they did about it.
This week’s guest is Lynne Seagle, CEO of Hope House Foundation, a not-for-profit organization started in 1964 by family members whom had sons and daughters with developmental disabilities in Virginia, USA. These families wanted something other than an institutional living for their loved ones, so they started the first group home in the state of Virginia. Hope house grew to run 13 group homes by the 1980’s, when they learned that the people living there actually didn’t want to live in group homes, and they did something about it. Today, Hope House supports 125 people that live in their own home, with a staff of about 260 people, half of those being part-time.
Lynne has been with Hope House for 38 years. She wants to create a better world for people with disabilities that are isolated or not valued, and she said, “there is no stopping point – it is a long journey”.
Finding Out People Didn’t want to Live in Group Homes
Paraphrasing from the podcast Lynne shares that, “…finding out people didn’t want to live in group homes started with a survey. The survey asked the question, ‘Does everyone like where they are living?’ Everyone said yes. It was odd to ask 120 some folks a personal question and get the same answer. We then re-worded the question to, ‘How do you want to live?’. And, the flood gates opened. People answered 1 of 3 ways, from most dominant to least; 1) I want a home of my own, 2) people wanted a job (most people were in day programs or workshops), 3) friendship and romance.
Lynne continues, “We [Hope House] had defined excellence as meeting all the rules – paperwork was clean, no employee grievances, well-kept homes, low staff turnover. We were looked at as the model in Virginia. BUT, when we gathered these themes [truths] we reviewed our program plans and not one program plan addressed these needs of people. This was a daunting realization for our organization.”
People Were Being Oppressed in Group Homes
Lynne Shares, “We started meeting people individually and we started realizing we didn’t know them. When you support someone in a group you only know them in the context of the group, not really an individual. It was quite astonishing to us. After we closed the first group home we started to study oppression (groups that have been oppressed); American Indians, women, people of color, the LGBT community. The book ‘Walking with the Wind’ by John Lewis was influential for us. We noticed all oppression looks the same, regardless of the group – keeping people poor, limitation of choice, very few freedoms.”
Hope House had discovered this truth that they were oppressing the very people they were there to serve, and they made a decision to no longer run group homes. The last of the 13 group homes closed 22 years ago, and everyone they support now has a home of their own.
Lynne shares, “[Hope House is] proud of this, but I’m surprised that this is still something to talk about as something new or something that should be considered in 2018.”
It was just the right thing to do.
At the time there were no examples on how to do this, and funding was set up in a group model. This was the hard road to choose. Lynne shares, what kept them moving forward is asking the question, “Why do people in disabilities need to live in groups when I don’t have to? We looked at the humanity of it, not the money, or the skill of the person.”
We are Responsible for the Oppression of People with Disabilities.
Paraphrasing from the podcast, Lynne shares, “What business looks exactly as it did in the 1970’s and has consistent oppression? When you look at social justice change in almost every case the people being led it were the people being suppressed. When you look at the nature of developmental disability, the people being oppressed need our support to lead a revolution, and we would be revolting against ourselves. We need to step up! Do we want neighborhoods that are being inclusive or not? There is a huge group that is being left out.”
Insight from Lynne: “We need to change, not people with disabilities that need to change.”
How Do We Bring People Out of Oppression?
Lynne shares, “What we did is gave everyone a home of their own. No one wanted a roommate, except for people that were romantically involved. This gave people a lot of control. We chronically underestimate people with disabilities. When given the opportunity a lot of people with disabilities flew. After that, a focus on employment. Economic power opens up more choice. Then we focused on connection and belonging. Not having a service life, but having your life.
Reconciling our Beliefs
Paraphrasing from the podcast Lynne Shares, “We had a prejudice or bigotry. When you value intellect and beauty …. people with disabilities don’t fit those values. When you lift that up you realize that you don’t believe that people with disabilities are your equal. We had to come to terms with that. That was internal work that everyone of us had to do. We believed the level of disability related to how much you could direct your life. We had to get rid of that stereotype. We support people that are non-verbal, that use a variety of devices [to live in their own home]. We now have a belief to the core that every single human being can direct their own life. When people are in their own homes they are looked at differently. The universe has its own way, without us controlling us. The natural rhythms of life start to happen then people have their own homes.”
Lynne shares the story of Willy and how he proved them wrong in his capability to direct his own life. Hope House went from providing $160,000/ year of support to $10,000 per year in support as Willy got his own place and started to flourish.
We are Oppressing People with Disabilities
Upon my reflections, we are oppressing people that are living in grouped settings, but people don’t have to be living in an institution or group home to be oppressed. People with disabilities are being oppressed by their families, their friends, their supporters and by society at large. Lynne shares with us the common signs of oppression; keeping people poor, limitation of choice, very few freedoms.
When I examine my own life, I’ve been guilty of keeping people oppressed. For example, I’ve played a part in keeping my sister (who has a disability) poor by not getting her access to her bank account and helping her learn her economic power, by limiting her choice or taking decision making power away from her, and by not acting to get her out of isolation at my parents home.
There are very simple steps I’m taking to empower my sister, like getting her a bank card and assisting her with online banking, by standing beside her to play a supportive role in making decisions, and creating and upholding a big bold vision for her to move out of my parents’ home and into a home of her own.
Once I became conscious to my beliefs, and how I was being oppressive to others I had to make a choice. I could choose to continue to suppress these truths and continue on with the status quo, or I could roll up my sleeves and do the hard work of examining my beliefs and change my beliefs to put people with disabilities on equal footing and to support them in breaking free of oppression. I chose the later, which will you choose?
Lynne leaves us with this message, “It is all of our responsibilities to work on ourselves around the issue of equality, regardless of disability, and to take action for those left on the sidelines."
Love & Respect,
Eric Goll
Resources:
Hope House Website: https://www.hope-house.org/
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tuesday May 08, 2018
Tuesday May 08, 2018
Guest Joscelyn Duffy shares her strategies of resiliency through her recovery from a life threatening illness, & we discuss how to be a compassionate supporter.
Joscelyn Duffy is a communication and contribution strategist who travels the world serving leaders in the development of their messages, model and methodologies. At the young age of 26, Joscelyn went from high potential employee in the financial sector and marathon runner to being bed ridden for 2 years with a life threatening case of lupus. During these two years Joscelyn slowly recovered but was only left with 2 to 3 good hours per day. Joscelyn shares, “This was a shock and massive unexpected shift in my life.” Joscelyn found that she had to make the best of her 2 to 3 hours, especially compared to when she had 16. She was left asking herself, “How do I push through with mental fortitude?”
Paraphrasing from the podcast Joscelyn shares, “When my illness happened I wanted to hold onto the way life was and went right back to work from bed.” She found that she couldn’t do what she was once able to do. She said to herself, “If I am listening to life I’ve got to get over what my head is telling me, and there is something else I could be doing.”
This new thinking led to acceptance of her current situation, and a focus on what mattered most to her – being active with other people, and engaging in her passions; reading, writing, and painting. There was a lot of healing that came through writing a book on her story titled, “Unshakable to the Core.” This led to Joscelyn’s current career as a ghost writer, helping other people to have their voice heard.
Joscelyn’s Insights on Resiliency:
For Joscelyn, it was simple; compassion and small actions.
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Simply have compassion for yourself.
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Small action; It is going to take small steps to get to where you want to go. When Joscelyn was learning where to walk, she had to start with the first couple of steps. Every step is like going up a staircase toward your ultimate goal.
How can we support someone that is experiencing a challenge?
“If you want to make god laugh, you tell him your plans.” – Woody Allen.
Paraphrasing from the podcast Joscelyn Shares, “Life rarely ever goes the way we plan it. We take ourselves way to seriously. We can take a light-heart into these situations as a supporter. Try to encourage flexibility. Especially when you are working with a person that has to do something a certain way, ask them to just try it once.”
Empathy Vs. Compassion
Something I have personally been struggling with is being empathetic of people I am supporting, rather than being compassionate.
So, why is this a problem?
Being empathetic is feeling and taking on what someone else is feeling or walking in their shoes. Or, as Joscelyn defines it, feeling the pain of another.
Vs
Being compassionate is understanding what someone is going through, but not taking on their emotions. Or as Joscelyn defines it, wanting help to alleviate the pain and suffering of others.
The challenge with being empathetic is that our ability to be helpful is at risk of being diminished by taking on the emotions of others, where as being compassionate allows us to stay grounded in our own perspective and to support the person to move forward.
The Compassionate Supporter is a More Effective, and Happier Supporter.
In 2016, Michael Poulin and associates at State University of New York at Buffalo conducted a study to see the impacts of taking two different perspectives as a supporter; a helping imagine-self perspective taking (ISPT) (i.e. walking in their shoes perspective), and an imagine-other perspective taking (IOPT) (i.e. seeing through their eyes perspective).
The study found that ISPT resulted in relative threat, whereas IOPT resulted in marginally greater relative challenge. This effect was mediated by increased perceived demands of the situation. Moreover, self-reported distress was only associated with threat during ISPT, but not during IOPT.
Source: https://www.sciencedirect.com/science/article/pii/S0022103116303961?via=ihub
So, what does this mean?
When we walk in another's shoes as a supporter, we take on threat and our stress levels increase. When we look through the other person’s eyes there is only a small impact on us - less stress. This study tells us that we can be a more effective supporter by being compassionate vs empathetic.
Putting Compassion into Practice:
Putting compassion into practice is something I am working to develop myself. Joscelyn offered a practical model, ‘The 4 P’s of Compassion’, to understand compassion that I found very insightful, as well as a couple of tools we can use to practice being compassionate.
"The 4 P's of Compassion"
Presence: Being there fully the moment with the person
Perspective taking: Seeing the world through their eyes, without fully stepping into their shoes
Patience: Being patient with yourself and those you serve.
Progress: support for forward progress – the small steps also count.
Tools to Practice Compassion:
Being compassionate is about perspective taking. As stated in Michael Poulin’s study, it is more beneficial to try and see things through another person’s eyes, rather than trying to walk their shoes. When we look through another’s eyes and stay grounded in our own two shoes as the supporter we have decreased stress, and increased health and wellbeing.
We aren’t helping others when we are taking on what they have.
Sounds great! How do we do this?
Joscelyn shares, “You can think about it like watching a movie. When watch a movie you might laugh, smile, or cry, but when the movie is over you haven’t taken that on (i.e. those emotions don’t continue to impact you). You have learned from it, you are better for it because now you see a different perspective, but you don’t internalize it. It is a dance.”
Joscelyn is also a Reiki practitioner, and she had to learn how to stay in own her own strength and energy. She shares a strategy that she uses, “I see my favorite colour around me (picture being in a bubble of colour), and positive energy can come in, and the negative energy can’t penetrate this shield. This allows us to stay in our own energy while supporting another."
On the podcast, Joscelyn also shares how to find your own voice, which is something Joscelyn has a great deal of experience supporting others to do as a ghost writer.
A big thank you to Joscelyn for sharing her story and insights on resiliency and compassion!
Love & Respect,
Eric Goll
Resources:
Joscelyn’s Website: Joscelynduffy.com
Joscelyn’s Books: Click Here
Joscelyn’s Blog: Click Here
Read more on perspective taking: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Wednesday Apr 25, 2018
Wednesday Apr 25, 2018
Guest Nick Maisey, founder of Befriend, shares his insights on building relationships and creating more inclusive cultures.
Nick is an Occupational Therapist, social entrepreneur and community builder from Perth, Australia. With the support of the Westpac Bicentennial Foundation, Nick completed a Social Change Fellowship to undertake an international information exchange, to enhance his learning of innovative, effective approaches to fostering the development of relationships and community connections.
Nick spends a lot of his time reflecting on the importance of relationships, and thinking about what we can do together to build more connected societies.
This curiosity is what led Nick to start the organization, Befriend. The inspiration to start Befriend came when Nick was studying Occupational Therapy. The story goes, Nick received an email from Tim, that roughly read, “I am a 23-year-old guy, I like watching movies, going to the beach, and learning how to surf. I don’t have any friends, I am wondering if there is anyone interested in getting to know me?”
Nick shares, “There was something simple and honest about his email. I met him (Tim)… he has taught me a lot about inclusion, and what it is like to live a meaningful life connected to others. He didn’t have a single person that he would call a friend. It struck me that we live amongst so many people in close proximity of each other, but there are so many people that feel alone.”
This started a lot of conversations between Nick and his friends, and in 2010 Befriend was started with the intention to foster a more inclusive and connected society.
Nick Shares, “The experience of loneliness for many of us comes from the feeling of being excluded. With Befriend we foster the development of new relationships, and a more inclusive culture.”
How is Befriend doing this?
Paraphrasing from the podcast Nick shares, “It is about simplicity. We take a community building approach by working with local people that are interested in building community, and we work with them to bring people together. We partner with organizations and networks where people are vulnerable, and we facilitate introductions and connections. In partnership with community organizations we help to get the word out about these gatherings, and build bridges to vulnerable people. In Perth, we have about 50 social gatherings per month across the city.
Befriend is kind of like a Meet up, which is platform for any individual that can start up a group around an interest, but with an intentional value of inclusion. Befriend focuses on teaching gathering hosts on how to cultivate inclusive cultures.
Reducing Loneliness and Isolation in Community:
In 2017, Nick was awarded a Social Change Fellowship from Westpac Bank’s Bicentennial Foundation to go on a self-development experience to further his social change venture. This was essentially a scholarship for a 3-month international self-directed learning tour that took Nick around the world and back, including stops in; Australia, New Zealand, United States, Canada, Scotland, England, and Denmark.
On Nick’s journey he visited 58 groups to explore his curiosity in these two key areas:
1. What are effective approaches for fostering the development of natural relationships for people who have had a lived experience of being isolated, disconnected, or devalued within their community?
2. What are approaches for fostering more inclusive behaviours, attitudes and values within communities?
On the podcast, Nick shares the stories of his visits to a few of these 58 groups, and what he learned with them. Nick and I also discuss the traits we see in people excelling in the ‘community builder’ role. Take a listen to the podcast to hear these insights.
The Space In-between:
Nick came to be very interested in the space in between his two key questions: that is, what are people doing to build natural relationships for devalued people, and to foster more inclusive cultures? A theme started to emerge – valued contributions. Nick noticed that when people devalued by their community made a contribution that they were intrinsically motivated to give they started to build natural relationships, and more inclusive cultures emerged. Some examples in practice where Nick observed this were volunteer time banking initiatives, skill exchanges, community dinners, interfaith initiatives (sharing knowledge and beliefs about god across religions to enrich collective sense of faith), and neighbourhood development projects.
Nick leaves us with this call to action to build relationships and create more inclusive cultures:
“Spend time thinking about, not what we need, or others around us need. But, how can we be helpful? And, how can others around us be people be helpful? Especially (use this thinking for) the people we think of living a life of needs.”
Love & Respect,
Eric Goll
Resources:
Nick's Blog: Click Here
Befriend website: Click Here
Befriend Facebook page: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Apr 10, 2018
Tuesday Apr 10, 2018
Welcome to Episode #042 of the Empowering Ability Podcast/ Blog. Today’s episode is about ‘Understanding the Sibling Experience, with Helen Ries.’ Before we get into the content of this episode, first some housekeeping because it has been awhile since you have heard from me.
Almost 4 months in fact.
In December 2017, I shared with you that the podcast would be taking a break for a couple of months so that I could develop new content and complete a few projects. However, life got busier than expected; with helping to run my family’s business, finishing the construction of my new house, supporting my sister to move out of my parent’s house, running my coaching practice for leaders and families working to create incredible ordinary lives for people with disabilities, and working on the adult sibling research we are going to share with you today.
Something had to give, and it was the podcast - even though I love podcasting. To give you an idea, publishing a 1- hour episode is about 10 hours of work, as I do all the recording, editing, writing, graphics, and publishing myself. So, moving forward I will be releasing an episode every 2 weeks, which is a much more manageable pace than weekly, also considering this podcast is currently free. I am a considering a ‘pay what you can model’ for those of you that are getting a ton of value from this podcast and wish to contribute to the production of the podcasts and the costs associated with it. I want this information to remain open and widely available to everyone, and this type of model will enable that. With all of that said, I have still been recording content over the last 4 months and I have some incredible conversations that I will be bringing to you over the next couple of months.
I’d love to hear from some of you to learn what has really resonated with you over the first 42 episodes. This will help me as I craft new content to bring you more of what you find valuable. Also, send me the names of guests you would love to hear on the podcast.
You can send me an email at eric@ericgoll.com.
Okay, enough housekeeping.
Today, my guest today is Helen Ries. Helen is a sibling, who supports her brother Paul, and they live together in Ottawa, Ontario. Helen also joined me on episode 9, which you can listen to here, where she talks in depth about her experience as a sibling and shares her insights. Helen is also an evaluator and consultant in the not-for-profit sector with an interest in social justice and poverty reduction, you can check out her work on her website.
Helen and I, discuss the research we have been doing to understand the life experience of adult siblings. The purpose of this research is to understand siblings so that we can better support adult siblings with resources, some of which we intend to create.
There were actually three of us completing this research, the third person being Becky Rossi. Becky just became the mother to her 3rd child, and wasn’t able to join us on the podcast – but here is a brief overview of our stories:
Helen’s Story:
All her life Helen knew that one day she would be responsible for her brother’s care. When that day arrived, it was early, unexpected and fast. The shock of suddenly becoming a caregiver still runs through her. There are moments when she remembers a time when she could go away for the weekend without planning it or when she didn’t have the nag of constant worry. It has been so far a difficult journey, but she is very proud of how her brother has thrived with her care and how their relationship has grown.
Becky’s Story:
Becky has spent the last seven years championing broad systems change through building community-based, non-traditional solutions to issues of isolation and vulnerability, both through her long-time work with P4P and as the sibling of an adult brother with Asperger’s Syndrome. Becky has a close relationship with her brother and – together with her sister and parents – they navigate the challenges and opportunities of creating a meaningful life, secure future and strong family.
Eric’s Story:
Sitting from his work desk Eric received a call from his distressed mother exclaiming "I just can't do it anymore". She was referring to caring for his sister, with a DD, 31 years old at the time. Eric had a decision to make – continue to stay arm’s length from his family, or jump in and play the role of a loving brother and loving son that he knew he could be. This started Eric's journey in supporting families with a loved one with a DD (including his own), through personal coaching and educating.
So, this is a big lead up to what we have learned, here it is….
The Sibling Life Journey
We looked at the common themes in the life of a sibling over the stages of a sibling’s life. These themes might not apply to every sibling’s life, but these are our observations from conversation with many adult siblings, and they line up well with the data we collected in a survey with over 360 adult sibling respondents.
0 years-18 years old: At a young age we get an understanding of disability, and we notice differences between ourselves and our sibling. Our parents are taking our brother or sister to many appointments and are often providing much more care to our brother or sister than they are for us. We are often asked to help out, and many of us just jump in wanting to help. This leads to siblings maturing faster than normal and developing a strong sense for caring for others at an early age. We also become our brother or sister’s protector. No one is going to mess with our brother or sister at school, or out in public without hearing about it from us. The maturity, carer, and protector are traits and values that we often carry with us throughout our lives.
18 years – 29 years old: At 18 typically siblings move out and go through a big growth and exploration phase. We get an advanced education, or head out into the working world, we try many jobs to see what we like, we travel. And our brother or sister, from age 21 on, is often living at our parents’ home with little to do and is actually in decline in terms of growth. During this time in a sibling’s life they will often describe having a feeling of guilt, as they are experiencing what life has to offer, and their brother or sister isn’t having the same opportunity. Siblings want their brother or sister to have the same life opportunities, but they don’t know how to support them to do so.
30 years – 39 years old: This stage of a sibling’s life is typically focused on career building and starting a family of their own. These things take a lot of energy and can mean a little less connection with our brother or sister and parents. This feeling of guilt can continue. We want better for our brother or sister but not really knowing how to help and use our influence. Siblings are often pushed out of the conversation my parents about their brother or sister because parents don’t want that ‘burden’ to be passed onto the other sibling.
40 years – 49 years old: Siblings have described having a ‘looming’ feeling in this life stage. More often than not, their brother or sister with a disability is still living with their parents, and the parent’s health is starting to decline due to age. Siblings can see this impending crisis coming, whether it is conscious or unconscious - it is keeping them up at night. What is going to happen when my parents can’t support my brother and sister? It is on me.
50+ years old: The parents decline to a point where they cannot provide care for their child with a disability, and someone else needs to take over that role. Many siblings step up to fill the role, all while dealing with their parents decline, their career, and their family. This can be a very challenging time period in a sibling’s life.
The Survey Findings:
There are 7 key findings that we share in the ‘Understanding the Sibling Experience’ report, here is a small glimpse into a couple of the findings that Helen and I discuss on the podcast. I recommend you check out the report, hosted by Partners For Planning (P4P), if you are interested in reading about all of the findings.
The Findings:
Where are our brothers and sisters with a disability living? Well it turns out that 85.6% of our brothers and sisters aged 20 to 29 years old are living with their parents. In comparison, the Canadian national average is 34.7% for people aged 20-29 years old. The percentage of people with disabilities living with their parents stays high well into the 40-49 year old age bracket, at 58.5%.
What are the current challenges identified by siblings? Siblings identified the mental health of their brother or sister and the mental health of their parents as the most frequent challenge they face. Followed by hosing options for their brother or sister, managing relationships, and emotional supports for themselves.
If you are interested in the other 5 findings, check out the report here.
Our Recommendations:
In our report, we outline 8 recommendations for siblings, families, organizations, and government to consider.
These recommendations include:
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A deeper study of siblings
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Adult siblings connect with other adult siblings to share their experiences
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Development of resources and tools for adult siblings
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Support for mental health of our families
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Innovative housing solutions
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Poverty reduction
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Siblings are involved in the family planning discussions
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Organizations reach out to siblings and support them.
I encourage you to read our report to learn more about these recommendations in depth, click here.
The Sibling Collaborative:
So, what is next for us? (Helen, Becky, and I)
We have done a lot of thinking about what we have learned about siblings and we have created a new project, called ‘The Sibling Collaborative’ to support siblings needs.
The purpose of the Sibling Collaborative is to ‘Connect Siblings and Strengthen Families’.
The Sibling Collaborative has a core set of values that guides our work:
Realizing Change with Compassion: We take action with the critical input and consideration of our brothers and sisters with a DD and our families.
Mutual Respect: We give people agency over their own lives, with consideration for all those involved.
Collective Solutions: We find a way forward by learning, working and co-creating together.
Unlocking Potential: We hold a big and bold vision for our brothers and sisters as well as our families. Our intrinsic creativity and resourcefulness knows no limit.
For this collaborative to be a collaborative we need others to collaborate with! We would love other siblings, self-advocates, family members, and organizations that share these values to partner with us on this journey. You can join the sibling collective mailing list here, to be updated on the journey as it unfolds.
Helen leaves us with a quote from friend to all siblings, Don Meyer, “If you want to invest in the long-term well-being of people with developmental disabilities, you need to invest in their brothers and sisters.”
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric Goll
Resources:
The Sibling Collaborative Facebook Page: Click Here: Sibling Network
Join The Sibling Collaborative Mailing List: Click Here
Email: info@siblingcollaborative.org
Understanding the Sibling Experience Report: 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
Tags:
Helen Ries
Siblings
Becky Rossi
Sibling Life Journey
sibling care-giving
Sibling report
The Sibling Collaborative
Thursday Dec 14, 2017
Thursday Dec 14, 2017
Al Condeluci provides us with a 4-stage framework to build social capital (meaningful relationships) for people with disabilities. Keenan Wellar also joins us to share the experience of putting the framework into action with his team at LiveWorkPlay. This podcast was created from a segment in Episode 006, so it might be the second listen for you long time listeners, but it is so good that it is worth another listen!
Resources:
How to contact Al Condeluci:
Website: http://www.alcondeluci.com/
Contact: http://www.alcondeluci.com/contact/
Location: Pittsburg PA, USA
How to contact Keenan & the LiveWorkPlay team:
Website: http://liveworkplay.ca/
Website: https://keenanwellar.wordpress.com/
Contact: http://liveworkplay.ca/contact-us/
Phone: 613-702-0332
Location: Ottawa, Ontario, Canada
Thursday Dec 07, 2017
Thursday Dec 07, 2017
Dr. Jen created the The Umbrella Project which embodies the idea of using challenges life throws at us as an opportunity to learn new skills and cope.
In this week’s episode of the Empowering Ability podcast, I had the pleasure of chatting with good friend, Dr. Jennifer Forristal (aka Dr. Jen). Dr. Jen helps us to understand the approach a Naturopathic Doctor (N.D) takes with a patient, educates us on gluten/dairy/ egg free diets, shares common questions and answers from the developmental disability community, and she shares her amazing work with The Umbrella Project.
Let it rain – The Umbrella Project
One of my favorite quotes is:
“Life isn't about waiting for the storm to pass. It's about learning how to dance in the rain.” —Vivian Greene.
Dr. Jen has created the The Umbrella Project which embodies the idea of using the challenges that life throws at us as an opportunity to learn new skills, and develop our ability to cope.
Dr. Jen, Founder of the project, shares, “The Umbrella Project is a paradigm that I have built to help people better understand the world of coping, positive phycology, and all of the skills that we use to have better wellbeing. The skills like self-compassion, resilience, mindfulness, and purpose have same research outcomes; they help us take on life and thrive no matter what is happening to us. I call it The Umbrella Project because I think about the stresses of life like rain, they are inevitable and we try to avoid them, but we are not going to. It is better for us to think about how to prepare for those days than it is to try and eliminate those days from our lives. We take the stress and the challenges of life and use it as a tool to build coping skills – what we call umbrella skills. I’ve built The Umbrella Project to do this, and we have brought it into schools to teach kids, and we are now educating parents as well.”
How Does The Umbrella Project Teach Kids?
Paraphrasing from the podcast Dr. Jen Shares:
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We share the language, and help kids understand what the skill is.
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We show kids the outcomes of those skills and tell them the research. It is amazing what kids can absorb!
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We help them go into the world and see these skills in action. For example, when you see someone being resilient it makes you more resilient yourself.
On the podcast, Dr. Jen shares how they are teaching parents these skills.
What Does a Naturopathic Doctor Offer?
Paraphrasing from the podcast Dr. Jen Shares:
Naturopathic doctors (N.D.s) are primary care providers in Ontario. N.D.s have the same training same as a medical doctor for first 2 years including; diagnostics, blood work, etc.. Where we branch off is that we use more natural styles of treatment such as, exercising, eating better, taking the right supplements, stress reduction. There is so much research on how these interventions are effective at treating many different conditions.
Naturopaths work to understand the cause of what is going on, rather than just focusing on symptoms. A N.D. spends a lot more time with a patient, and we work toward bringing that person to an optimal state of wellbeing. For example, if someone had a skin condition we would look at things like what is going on with their gut health, not just put a cream on the rash. OR if someone was experiencing anxiety we would spend a lot of time looking at the lifestyle things that would help them come out of that state of anxiety and address the underlying things, rather than just give them a medication to alleviate the symptom of anxiety.
Gluten / Dairy Free Diets:
Paraphrasing from the podcast, Dr. Jen shares:
There isn’t a cookie cutter approach, and recommendations are always individualized. The research shows a certain percentage of the population responds really well to gluten free & dairy free diets. Eggs come up often as well. It is worth trying this type of diet and seeing if it works for you. You can start to see evidence of positive changes in as little as 1 to 2 weeks. It isn’t something that you have to commit to for a life time. Look for noticeable changes, you might not see the full impact of the changes, but you can start to see results. There is often gut symptom that comes up from eating these foods, and it is easy to see changes in these symptoms.
Are There Common Questions You Get from the Developmental Disability Community?
Paraphrasing from the podcast, Dr. Jen shares:
Often, when I see these families biggest thing that I see is that parents get very tired and burnt out. The parent brings in the child, and focus shifts to the parent. We discuss getting better balance in their life. If the parents are healthy then it seems to trickle down to the rest of the family.
When it comes to kids, sleep is a big thing. If one person isn’t sleeping then the whole family can be impacted.
On the podcast, Dr. Jen also discusses the importance of sleep, and provides sleep tips. She also shares how to find the best N.D. for you.
A huge thank you to Dr. Jen for coming on to the podcast and sharing her amazing work. If you are interested in learning more about The Umbrella Project, Dr. Jen would love to talk with you about it.
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:
The Umbrella Project Curriculum and Newsletter: Click Here.
Email: Drjen@umbrellaproject.co
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Thursday Nov 30, 2017
Thursday Nov 30, 2017
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:
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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).
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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.
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No one logs on more moments and minutes with their brother or sister.
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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:
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Over 90% of respondents said they had a positive effect on how they felt about brother or sister.
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2/3 of respondents were taught coping strategies.
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94% said they would recommend Sibshops to others.
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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!
Thursday Nov 23, 2017
Thursday Nov 23, 2017
In this week’s episode on the Empowering Ability Podcast we welcome guest Dr. Annick Janson, whom resides in NZ. Dr. Annick Janson is a clinical phycologist, and a mother of 3 children. Her youngest child, Yaniv, is on the spectrum, and life changed quite a bit when he came into their lives. Annick carries the deep personal experiences of being both a family member and a service professional.
As a professional, clinical phycologist, Annick followed a typical pathway, and became dissatisfied with the outcomes they were getting.
On the podcast Annick Shares:
“4 years ago, I met Sylvana Mahmic, CEO of Plum Tree service provider for young children that have a developmental disability in Australia - serving 700-800 people per year. [Both Sylvana and Annick have a child with a disability.] (They asked) if we had to scrap everything, what would be the best service offering for families that will make a serious difference?”
They took a design thinking approach, including an ethnographic research approach and rapid prototyping to build a learning program called 'Now and Next'.
Annick Shares, ”(We looked at) how can parents use their learning to build on success, and get better, and better results for their children. We started with 18 sessions, and it is now down to 8 group sessions, and 1 one on one session.
The learning program shifts the mindset of parents to understanding the power of their own agency, and the control they have over their wellbeing.
Why a Learning Program?
Paraphrasing from the podcast Annick Shares:
We are using a learning program because we found people (parents) are feeling overwhelmed, and there generally isn’t something wrong with them (grief, denial, etc.). Annick didn’t want to generalize, but what they found is that what people need is to learn strategies and solutions to get the results that are meaningful to them. Now and Next is a learning framework, rather than a therapeutic framework.
The Now and Next Program VS. The Traditional Model
There are 5 areas of differentiation that the Now and Next Program focuses on Vs. the Traditional Model.
Paraphrasing from the Podcast Annick shares:
1. The Initial Interview:
In the initial interview with a professional they ask you “Tell me about your child?” This was a stressful situation as a mother. You eventually say… "my child can’t do this, and can’t do that." Parents are left feeling terrible. Until now we haven’t really had a better way.
In the Now and Next Program, we used the theory of gamification and created a game called, 'Pictability'. We chose pictures for the game based on our research of what people had used their individualized funding for. We designed the game so that people are brought straight into the strength domain using projective identification. People are able to identify a great future for their child and create a vision board with a long-term vision, and short-term goals. Games can bring out a lot of creativity and learning.
2. Notes are Shared:
In a typical parent – professional relationship the professional is the one that is taking and keeping the notes. These are often written up in a report by a professional that may be written in jargon and can be hard to understand for families.
With Now and Next Parents hand write their own goals, and we use technology to create a multi-media report so those goals can be shared with loved ones and supporters easily.
3. Working on Goals:
In the traditional model, I often hear that it is really hard for parents to come up with goals, and the goals are written up by the professional, as mentioned above.
In Now and Next, parents define and work on their own goals, and they become empowered. Parents choose their own goals, and parents are committed to these goals because they have chosen them.
4. Positive Psychology:
The Now and Next Program is the first of it’s kind (to Annick’s knowledge) to incorporate the concepts from Positive psychology. Traditionally psychology looked at how we can get someone from a -3 closer to zero, say -1. Positive psychology looks at how can we get someone who is at zero to +2.
Martin Seligman, one of the forefathers of positive psychology, taught us the concept of learned helplessness, which says that we bear unpleasant circumstances because we have learned they are un-escapable. But, through prospection we are able to look into the future and build a better future for ourselves. We looked at the prospection model and integrated these ideas into our model.
5. Sustainable and Scalable:
With the traditional model, there is a power imbalance and families are dependent on professionals. This is not sustainable. There is limited funding for professionals, and we cannot rely on this.
When I talk to professionals and parents all around the world and ask them how they would rate their partnership their answers don’t always match up. At the end of the day, parents are expecting professionals to do the work to ‘fix’ their child. As a society, we have put professionals in high regard, and we have given them power.
With the Now and Next Program we hold parents as the experts, and we are giving parents the tools they need to build the future they want. We have also found that Parent to Parent facilitating has proven to be most effective because of the deep understanding and empathy parents have for each other. This contributes to the scalability of the program because participants are becoming facilitators, and they can then train local people.
The Now and Next Program is measuring the amount of agency (i.e. empowerment) that a parent has, and they have demonstrated significant increases post program.
“In April 2017, the peer facilitators and alumni of the Now and Next program held their inaugural conference, entitled ‘By Families, For Families’, in Sydney, Australia. At this conference, something groundbreaking transpired, something both profoundly significant and genuinely radical: parents of young children with disability and developmental delay actively accepted responsibility for asserting their “natural authority” (Kendrick, 1995) in their partnerships with their child’s professionals and therapists.” Read more from the source article here.
Annick Reflects on the turning point with her son, Yaniv:
“I was disappointed in professionals trying to get Yaniv to fit into a ‘normal’ box, (which wasn’t working very well). There was a lot that he was teaching me, and we decided to go for the amazing and genius box. In high school, Yaniv became interested in art. In art class, he required less of a teacher aid, and this motivated Yaniv. Whereas, in the more academic classes he needed more of an aid. We took the ‘Eye of the needle’ approach, and everything they were trying to teach Yaniv would go through art. An artist needs to have a bio, and the way that you write it is by pushing this button on the computer. Today, Yaniv is an international artist. Learn more about Yaniv and his art through his website Yanivjanson.com.
A huge thank you to Dr. Annick Janson for coming onto the podcast! If you would like to learn how to bring Now and Next to your area please reach out to Annick! (email: annick@egl.ac.nz)
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Annick’s email: annick@egl.ac.nz
Website: egl.ac.nz
Blog: Click Here
Videos: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Thursday Nov 16, 2017
Thursday Nov 16, 2017
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
Thursday Nov 09, 2017
Thursday Nov 09, 2017
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/
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!
Thursday Nov 02, 2017
Thursday Nov 02, 2017
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!
Thursday Oct 26, 2017
Thursday Oct 26, 2017
Learn what intentional community is, and the building blocks to build your own intentional community.
This week, I am re-sharing an important conversation from Episode #022 on Intentional Community, with Janet Klees and Linda Dawe.
Janet Klees has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Until recently, she has been coordinator with the family-governedDeohaeko Support Network for over 20 years. She is the author of three books which are directly rooted in the Deohaeko experience, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world. Currently, Janet is the Executive Director with a family support organization, the Durham Association for Family Respite Services.
Linda Dawe is a founding member of the Deohaeko Support Network– a family led collective that has embodied diversity, inclusion and community since its inception in the mid 1980’s.
Intentional Community
There is a lot of discussion in the disability sector about what community is and the definitions can vary widely. The conversation can range from placing groups of people (such as people with a disability and seniors) together in a building to support each other, to a diverse group of individuals coming together to build relationships and share their gifts with each other.
Amazing community builder, Linda Dawe shares what she has learned about building an intentional community at Rougemount over the last 25 years:
“Intentional community is not something that you measure - it is something that you feel. It isn't a thing, it is in the hearts of people, and people embrace it to different degrees. One of the things that was important in creating the intentional community at Rougemount was the diversity in the residents that represented the actual community. Not placing groups of people together, such as seniors and people with disabilities. Intentional community at Rougemount started out as a grand thing, but simply it is just being in relationship with each other. People living well together. It requires effort, consciousness, and core people to hold the values of the community.
Janet Klees adds: “Simply put, community is being a good neighbor. At Rougemount people look for opportunities to be good neighbors and then talk about it, and hold up examples of it.
Intentional community isn't a building - it is a mindset! We can take the ideas with us, and many groups have. People have come into Rougemount and have seen how it works, and then brought it into neighborhoods with single family homes, and brought it into condo buildings. Rougemount is just an example of how it can work.
The Key Takeaways for me are:
1. Building Intentional Community starts with rich diversity and upholding neighbourly values.
2. Fostering Intentional Community requires us to get a common understanding of each other, and through that understanding building trust and respect. From here we can show love to each other in small little ways, and uphold those acts of love.
3. Be intentional in creating opportunities for people with disabilities to build relationship. Do not group them in housing or support.
Thank you for reading to today's blog! If you liked this episode and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Purchase These Books to Learn More Lesson's from Deohaeko:
"We come bearing gifts" by Janet Klees
"Our Presence has roots" by Janet Klees
Learn more about Deohaeko: Click Here
Learning events In Durham Region: Click Here
Book a study tour to learn about Rougemount and Deohaeko: Click Here
Contact Janet Klees: janet@legacies.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Thursday Oct 19, 2017
Thursday Oct 19, 2017
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!