Episode 47 - Who Will Care When You’re Gone? Building Lifelong Networks for Loved Ones with Disabilities with Rebecca Pauls
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"In this episode of Your Estate Matters, Nicole and Greg sit down with Rebecca Pauls, Executive Director of the Plan Lifetime Advocacy Network (PLAN). Rebecca shares how PLAN helps families answer one of the hardest questions they’ll ever face: What will happen to my loved one with a disability when I’m no longer here?
From the power of personal support networks to practical tools like representation agreements, discretionary trusts, and the Registered Disability Savings Plan, Rebecca explains how families can create lasting security and genuine belonging for their loved ones. She also highlights the emotional side of future planning, the risks of isolation, and why starting early is the greatest gift you can give.
This episode shines a light on both the practical steps and the human connections that make estate planning truly effective
Nicole 00:00:02 Hello and welcome to Your Estate Matters with your house, my colleague Greg Brennand and myself, Nicole Garton of Heritage Trust.
Greg 00:00:09 Your Estate Matters is a podcast dedicated to everything estates, including building and preserving your legacy.
Nicole 00:00:16 If it's estate related, we'll be talking about it. We're having the conversations today that will help Canadians protect their families, their assets and their legacies tomorrow. With us today on Your Estate Matters is Rebecca Pauls, the executive director of the Plan Lifetime Advocacy Network Plan, a Vancouver based social enterprise dedicated to fostering inclusive communities for individuals with disabilities and those experiencing social isolation. She is recognized for her enthusiastic leadership and creative facilitation and community development. Since joining Plan, Rebecca has spearheaded a comprehensive redesign of the organization's planning practices, integrating principles of person centered planning, asset based community development, narrative practices, and independent facilitation. Her innovative approach has demonstrated the strength and flexibility of community based strategies, leading to invitations to consult with organizations across North America on scaling and applying these methods to diverse populations. Beyond her role at plan, Rebecca serves as a faculty member at the asset based Community Development Institute of DePaul University in Chicago, contributing to the advancement of community development practices.
Nicole 00:01:34 She also co facilitates the Personal Support Network Facilitation Course through the Plan Institute, furthering education on building supportive community networks. Rebecca's career has taken her to communities across Canada and internationally into countries such as Ethiopia, Zimbabwe and Guatemala. She currently resides in the Vancouver's Gastown neighborhood with her partner and their four children, embracing the area's rich diversity and spirit of social innovation. Her work is driven by a deep belief in the unique gifts each person possesses, and a commitment to ensuring that everyone has the opportunity to contribute to and be recognized within their communities.
Greg 00:02:15 Rebecca, can you start by telling us a little bit about yourself, your background, and what led you to your work at plan?
Rebecca 00:02:23 Sure. I'd be really happy to share. My journey in community development and disability advocacy began with a simple but profound belief that everyone belongs, and that community is where we find purpose, support, and joy. Growing up, I saw firsthand how communities came together to support each other, and I've always been drawn to spaces where connections were valued, where people gathered not out of obligation, but just out of genuine care for each other.
Rebecca 00:02:49 And I was especially inspired by families I met early in my career. They were families who were working tirelessly to make sure that their loved ones were seen, valued and connected. Their resilience and commitment to creating good lives for their kids, even in the face of barriers really shaped how I understood community. And I realized that strong, intentional relationships really aren't just a nice to have, that they're the foundation of a good life. And when I came across Plans Work, it felt like coming home. Here was an organization that didn't just talk about inclusion or actively building it. And Plan focuses on personal support networks, creating lifelong relationships for people with disabilities. And that's exactly what I believed was needed. So for me, it's about recognizing that gifts that each person bring to the community and making sure that each of the gifts are valued, celebrated and in a part of everyday life.
Nicole 00:03:45 So for listeners that aren't familiar, can you tell us a bit more about plan and how it supports individuals and families with disabled members?
Rebecca 00:03:53 Of course, Plan, which stands for Planned Lifetime Advocacy Network, was founded over 30 years ago by a group of families who were asking a very powerful question.
Rebecca 00:04:03 What will happen to my loved one when I'm no longer here? At its heart, plan is about answering that question with a sense of hope and community. Plans mission is to build personal support networks for people with disabilities. These networks are intentionally created groups of families, friends, neighbors, and community members who come together and not only to provide practical support, but meaningful connection. It's about ensuring that people with disabilities are not isolated or disconnected, but instead surrounded by people who know them, love them, and are committed to their well-being.
Greg 00:04:36 One of the core ideas at plan is the importance of personal support networks. Can you explain what a personal support network is and why it is so important?
Rebecca 00:04:45 Sure, a personal support network is a group of people who are intentionally brought together to support an individual with a disability. These are not paid professionals, their friends, family members, neighbors, and community allies who are committed to being a part of that person's life for the long term. The power of these networks is they go beyond just meeting basic needs.
Rebecca 00:05:06 They bring joy, security, and a deep sense of belonging. A personal network means that there's always someone there to celebrate milestones, navigate challenges, and simply share life. One story that comes to mind is a young man named Daniel. Daniel's personal support network includes his former soccer coach, his neighbor who loves gardens, a family friend who used to babysit him, and his cousin. They gather regularly, not out of obligation but of genuine care. When Daniel wanted to apply for a part time job, it was his network that helped him to prepare the interview, practice his skills, and eventually celebrate when he got the job. It's a beautiful example of how community can come together to support someone in very real, practical and loving ways.
Nicole 00:05:51 So you've led a major redesign of plans. Planning practices integrating approaches like person centered planning and asset based community development. Can you tell us what those approaches mean and why they matter?
Rebecca 00:06:06 Person centered planning is about focusing on the individual, their hopes, their dreams, their unique strengths, and then building a plan around that.
Rebecca 00:06:15 It's about truly listening to what matters most to them and ensuring that their voice is central to every decision. On the other hand, asset based community development is about identifying what's strong and not what's wrong in the community. It's a strength based approach that values the gifts, talents and resources that are already present. When you combine these two approaches, you create a very powerful foundation for true community inclusion.
Greg 00:06:42 Many families are anxious about the future, especially legal and financial planning for their loved ones with disabilities. How does plan guide families through these complicated and sometimes overwhelming areas?
Rebecca 00:06:54 Sure. That's such an important question. Greg Kaplan. We understand that planning for the future is not just practical. It's deeply emotional. Parents and family members often worry about what will happen when they're no longer here or around, to provide the care and support for their loved ones. That's why our approach is holistic. We start by having conversations with families about their hopes and fears for the future. We talk about everything from housing to daily living supports to community connections and long term financial stability.
Rebecca 00:07:26 It's not just about taking the boxes is about crafting a vision that's sustainable, safe and secure. Our team also helps navigate things like wills and representation agreements, which are essential for ensuring that a loved one's wishes are respected. We also support families in setting up discretionary trusts, which allow assets to be managed without affecting government benefits. We make sure that families understand their options. Refer them to trusted professionals when necessary, and guide them step by step through the planning processes. It's not just about making decisions about having them feel confident and having peace of mind.
Nicole 00:08:04 The plan is kind of famous, I guess you can say that they really led or spearheaded the development of the registered disability savings plan. And it's interesting. As an estate planner for many years, I was surprised that not more people are aware of this valuable resource for families. Can you tell our listeners what is an DSP and how can it benefit a loved one with a disability?
Rebecca 00:08:30 Sure, the DSP is one of the most powerful financial tools available for families with a loved one who has a disability.
Rebecca 00:08:36 It's a government matched savings plan that allows families to put away money for the future, and the government matches the contributions, sometimes up to three times the amount that the family deposits. What's remarkable about the DSP is that it grows over time, and that the withdrawals are tax free when used for disability related expenses. For many families, it's a lifeline to ensure that their loved one will have financial security even when they're no longer here to provide it.
Greg 00:09:03 But common mistakes or misconceptions do you see when families are making when it comes to future planning and how they can avoid these types of mistakes?
Rebecca 00:09:11 That's a really important question. One of the biggest misconceptions I see that families often think is that planning can wait. I can't tell you how many times I've heard families say, we'll get to that when things settle down. But the truth is, life rarely settles down. There's always another challenge, another change. And before you know it, years have passed. Starting early is the key because it allows for more options, more flexibility, and less stress.
Rebecca 00:09:37 It also means you're not trying to make critical decisions in the middle of a crisis. Another significant misconception is around government benefits. Things like the DSP, disability tax credits, and other supports that are incredibly valuable. Sometimes families miss out on these opportunities simply because they don't know they exist, or they don't know how to navigate the application process. At plan, we walk families through those steps, making sure they understand what's available and how to access it. But I'd say the most profound misconception is the idea that the work of planning happens on paper. Write the estate plan, file it in a cupboard, and feel like everything's set. And while the legal documents are absolutely important, they're just the beginning. The real security comes from intentional relationship building. We've learned it's not just about appointing a trustee or naming someone as a representative. It's making sure those individuals are part of your loved one's life actively, consistently, and meaningfully. At plan, we often say it's not about what happens when you're gone as parents, but who will be there.
Rebecca 00:10:42 That's why we encourage families to go beyond the paperwork and build a network of people who truly know their loved one. Identifying the people who can take on the important roles like trustee, advisor to the trustee or representative, and actually involving them in the conversations about planning. We've seen families successfully transition responsibilities when those relationships are nurtured over time. It's not just a legal role, it's a real human connection. And part of that work, the plan is to guide families in having those open conversations, not just once, but regularly. It's about making sure that the network understands how things are set up, what roles they might play, and then ensuring safety and security for years to come.
Nicole 00:11:25 So I should mention to our listeners, we have a disability guide also that people can access and it's. Disability planning. And we keep that up to date with a lot of the government credits, benefits, forms and things like that. So that's something to check out. We'll put that in the show notes. And Rebecca will also put the plan website and things in the show notes as well.
Nicole 00:11:51 So you've talked about financial and legal issues and the importance of community and isolation is a huge risk for people with disabilities as they age. What do you find are the biggest barriers to community building or inclusion?
Rebecca 00:12:06 Absolutely. Isolation is one of the biggest risks. And it's not just about physical isolation. It's also about social isolation. Feeling disconnected, unseen, or valued. One of the biggest barriers I've seen is the assumption that people with disabilities belong in segregated spaces, group homes, day programs, specialized services. And while these services are important, they often unintentionally separate people from the broader community life. I think another barrier is the mindset that people with disabilities are primarily recipients of care, rather than contributors to the community and a plan. We work hard to shift that perspective. People with disabilities have unique gifts, talents, and experiences that enrich our communities, and our role is to make sure that those gifts are recognized and that they have real opportunities to participate in community life.
Greg 00:13:01 I consulted with organizations across North America on how to adapt plans methods.
Greg 00:13:07 What lessons have you learned about scaling community based planning beyond the disability sector?
Rebecca 00:13:13 One of the greatest lessons we've learned is that the principles of community building are truly universal. While plan began with a focus on people with disabilities, the concepts of personal support networks and asset based community development can be applied to so many different groups. Seniors, newcomers, even people experiencing homelessness. I think the most important thing is recognize that everyone has gifts to share. Everyone benefits from a connection. So whether it's a senior who wants to stay in their home or a newcomer trying to find their footing, a new, new community, having a strong network of people around you is what makes all the difference.
Nicole 00:13:50 So many families experience grief, stress, and burnout as they think about the long term future. How does plan help families process these complex emotions and build resilience for the journey ahead for them and their loved one.
Rebecca 00:14:05 That's a really important question because future planning is not just practical. It's deeply emotional. And for many families, there's a real grief and fear around that question.
Rebecca 00:14:15 What happens when I'm not here? So what can we honor those emotions, and we hold space for families to talk about their worries, their hopes, and their fears. Plan is also a network of people with disabilities and families, so the peer support aspect of our work is extremely important. So there's many opportunities for families to connect with others who are going through the same journey. There's something very powerful knowing that you're not alone and that you're not the only one going through whatever situation it is. So we see families supporting each other, sharing stories and experiences and building resilience together. It's really one of the most beautiful parts of our work.
Greg 00:14:55 What are some of the plans, current priorities, projects or initiatives that you're most excited about right now.
Rebecca 00:15:00 There's so many key priorities. It's hard to answer that question, but I think one of our main focuses right now is supporting people with disabilities and families as they age. We're seeing the rubber really hitting the road for many of our networks, and we're working hard to ensure that people have what they need to live a good life and that their parents have peace of mind even as they're aging and eventually pass away.
Rebecca 00:15:26 Alongside, we're also building new tools and resources specifically designed for the personal support networks the trustees, the representatives and the network members who step into critical roles. We recognize that effective networks don't happen by accident, that they need intentional support and robust planning to thrive over time. In many situations, families have had a lifetime to learn what works, what doesn't work, what's important. And as families and parents pass away, it's exceptionally important for the rest of the network, especially those in the important and specific roles, to have that information and to be able to provide continuity. As parents age and as the network becomes more critical in the person's life.
Nicole 00:16:13 So if you could wave a magic wand, what changes would you like to see about how our society supports individuals with disabilities?
Rebecca 00:16:22 Well, I'd like to have a magic wand and I would like to wave it. And I think seeing communities naturally, including people with disabilities as full and valued members, recognizing that each person plays a role. I believe that everyone does care and wants to contribute.
Rebecca 00:16:42 But many times we're all very busy and exhausted and working hard to manage our own lives. We don't often prioritize or take the time to reach out, or to show the care or the intention that we want to or think about. And so my magic wand would give us all the ability and the time and the focus to do every good thing that comes to our mind to express the care, the love, the things that we want to do. What we often feel too busy to do. I think on a practical side, I'd also like to see future planning as something that's normalized and fully supported. I'm guessing you'll agree with me on this one. I think right now families often struggle to navigate the legal, financial, and social planning. There's very limited resources available right now, plus all of the economic pressures that people are feeling. So I would create a process that's seamless, where families are supported from the very beginning with very clear guidance and the support that they need to make those things happen.
Greg 00:17:49 Rebecca, for someone listening today who wants to strengthen the support network around a loved one with a disability, there are 1 or 2 practical steps that they could take right away.
Rebecca 00:17:59 This is such a good question, and I think there's a few practical steps that people can take right away. The first step would be to simply map out who's already in their life. I encourage families to sit down and make a list of friends, neighbors, and relatives. Anyone who knows and cares about them and their loved ones. I think sometimes we forget how many connections we actually have as a second step. I'd say start having conversations. It doesn't have to be formal or complicated. It could be as simple as inviting someone over for a coffee, or asking a neighbor if they'd like to join you on a walk. Community is built through small, consistent, and intentional steps. I think another practical step is getting involved in local community events. So whether it's a book club, volunteering, or attending local festivals, there's always opportunities to build new relationships and to strengthen the new ones.
Rebecca 00:18:55 Finally, I recommend to all families to utilize the resources that that already exist. Maybe it's a family member who's five years ahead of you in the journey of planning for the future, or someone who's already been through what it is that you've had. There's an incredible amount of tools and resources available. Often those resources just make us feel more stressed out because we don't have the time and the energy to make those happen. But I think once you've moved through that learning stage and connect with other families, you'll be more able to get that work done and have that sense of peace of mind that we all strive for.
Nicole 00:19:37 So what are some resources or programs you recommend people look at to get started?
Rebecca 00:19:42 I think there's a lot of resources in each of our communities. There's groups and associations, community centers. Sometimes it's just about looking at those bulletin boards that are in Starbucks or in the library about different events that are going on. Obviously you could research groups who talk about estate planning or groups who talk about rep agreements, whatever it is that you're looking for.
Rebecca 00:20:04 There's probably someone else in your neighborhood who is thinking about the same things or working along the same things. One of the big pieces that plan does for the most number of families is just navigating the tools and resources. And so I'm very happy for your listeners to give us a call or to send us an email and just say what resources exist for this or for that, whatever it is that you're available. Because like I said, especially with the internet, there's hundreds of things out there. Plan Institute, our sister organization, also has an online future planning tool which allows you to click in kind of where you're at, what province you live in and what you're looking for, and offers checklists and information geared towards your specific information. And so I think that's a really helpful starting point.
Nicole 00:20:53 So clarify of how does Plan Institute differ from what your organization does.
Rebecca 00:21:00 When Lifetime Advocacy Network was started about 35 years ago and there was such a demand desire for families to have this type of support and collaboration. Families across Canada, throughout North America and around the world were asking us if we could start a plan in Ontario, or could we build something in Prince Edward Island? And our model was small and connected based on families.
Rebecca 00:21:27 So eventually Plan Institute was started to become the way in the space to share resources, to provide consultation. A lot of the tools for the Registered Disability Savings Program, the upcoming Canada Disability Benefit Accessing Disability Tax Credits Plan Institute has a helpline and is able to provide quicker and kind of less intense face to face support like plan does.
Nicole 00:21:53 Does it have the same website or is it.
Rebecca 00:21:55 There is a different website. They are linked by Plan Institute aka or is a good place.
Greg 00:22:02 Rebecca, are there any final thoughts you'd like to share with our audience?
Rebecca 00:22:05 I'd like to say thank you for your interest and plan, and for inviting us to be part of your show. I know there's a lot of families who know they have to do their estate plans or get their well done, and they don't even know about the specific areas that they need to think about when it comes to discretionary trusts and other places. And so the fact that you're amplifying that and creating resources for these families, we really appreciate that. And I hope we can continue to work together to meet those families who don't have the peace of mind that they need right now.
Nicole 00:22:39 We would love to. And if listeners want to learn more, how can they find you and find plan?
Rebecca 00:22:45 Plan has a website plan. Our email is hello at plan and we'd really love for you to reach out. We can schedule a coffee over zoom or meet up somewhere close to your neighborhood. If we have team members in your area, but just reach out and we'd be really happy to go from there.
Nicole 00:23:04 Well, thank you so much, Rebecca, for your time.
Greg 00:23:05 Thank you Rebecca.
Nicole 00:23:07 This podcast is for informational purposes only and should not be considered individual, legal, financial, or tax advice. Make sure to consult the advisor of your choice to advise you on your own circumstances. Thank you for joining us for this episode of Your Estate Matters. If you like.
Nicole 00:23:25 This podcast, make sure to follow it on your podcast platform of choice.
Greg 00:23:29 Whether you are planning your own estate or your acting as executor for somebody else's heritage, trust can help. Partner with Heritage Trust to protect your family, your assets, and your legacy.
Nicole 00:23:40 If you'd like more information about Heritage Trust, please visit our website at Heritage Trust Company.
Greg 00:23:53 This podcast is produced by Podfather Creative.
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