#051: 9 Insights on Creating a Home for People with Disabilities

[10-minute read, 85-minute listen]         

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. 

You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.

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..

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 is a 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:

  1. 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.
  2. Group homes are forced shared living, and this often creates a stressful living situation.
  3. Investment in group homes creates the idea that it is the only option for people.
  4. Individualized one person at a time is much better because it gives you much more choice.
  5. 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 the 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 kindest 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 a 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 grassroots 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 held 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 upfront 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 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 disabilities 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 neighborhoods.

7. Where there are families that are willing to create a home in community the government needs to support with resources. These are the 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:

  1. Where do you want to live?
  2. What kind of building do you want to live in?
  3. Who do you want to live with?
  4. What supports will be needed 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;

  1. Where do most citizens tend to live in your community?  
  2. 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 into 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. “

*You can listen to the podcast by clicking below.*

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:

You can dive deeper into each of the insights by reading the blog or listening to the full podcast episode for each guest.

1) The individualized one person at a time option is the best option for people.

#047: Mindshift & Enlightened Attentiveness, with Michael Kendrick

2) The people living in group homes want a home of their own.

#045: Uncovering the Truth: We are Oppressing People with Disabilities, With Lynne Seagle

3) Creating a home is about building a life, the house is only part of the picture.

#016: Housing Mini Series Part 2/6 – “On a waiting list for 22 years – this is what I’ve learned”, With Ron Pruessen

4) Give people their own front door, and separate housing and supports.

#025: Housing: Giving People Their Own Front Door, with Chris Woodhead

5) Housing is a Community Issue.

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

6) A coach or independent facilitator can support you to create and implement your vision for creating a home (and a life).

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

7) Creating a Vision: The Best Home for the Individual

#013: Housing Mini Series Part 1/6 – Creating a Home, With Marg McLean

8) No one can tell you the right answer. You have to figure it out for yourself!

#017: Housing; “What Should We Do?”, With Keenan Wellar

9)  Be a creator: Start conversations, build relationships, and uncover community resources.

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

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