Our Parallel Paths: A Future for My Loved One With a Disability... and Me!: Recent Episodes
Networks for Training and Development, Inc.
This podcast series talks about the paths taken – in this case multiple paths – by family members and their loved ones with disabilities as they plan for their respective futures. Let’s talk about creating a promising future for our children as they become adults - and a promising future for ourselves as our role of parent, family member, caregiver, whatever evolves too. There is more than one path being taken here, and more than one future to talk about. And that’s why we’re here! Some very cool people will share their stories with us. I will be listening with you, and I’ll have some questions, too. Join us as we navigate “Our Parallel Paths: A Future for My Loved One With a Disability… and Me!”
Supports Coordination - An Interview with Jessica Fenton, Miracle WorksSubtitle: Part of the Our Parallel Paths podcast series hosted by Gerry Arango Deely, Ed.D.
Recording Date:May 3, 2024
Transcript:Download transcript HERE
Keywords:Supports Coordination, waiver funding, CMS, IEP, ISP, transition, Our Parallel Paths, Gerry Arango, Geralyn Arango Deelely, Jessica Fenton, Miracle Works, advocacy, family
Episode Summary:In this episode, host Geralyn Arango Deeley introduces her guest, Jessica Fenton, who is a Supports Coordinator and Director of Miracle Works, a Supports Coordination Organization in Pennsylvania. They discuss the role of supports coordinators in locating, coordinating, and monitoring services for individuals with disabilities. They also talk about the different waivers available in Pennsylvania and the importance of advocating for the needs of loved ones. They touch on the transition from the Individualized Education Program (IEP) to the Individualized Support Plan (ISP) and the shift in language between goals and outcomes. The episode ends with a brief discussion of some upcoming changes in the system.
Topical Index:
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Write About It, Part 2 - Journaling TipsRecording Date: February 14, 2024
Keywords: Journaling, writing, Gerry Arango, Geralyn Arango-Deeley, Our Parallel Paths, self-expression, journaling tips,
Transcript: Download transcript HERE
Episode Summary: Gerry continues sharing about her writing journey, and encourages caregivers to incorporate the habit of writing or "journaling" into their lives as a tool for problem solving, gaining perspective, and emotional support. In this second episode on journaling Gerry shares some quick and easy tips for making journaling a habit in your life.
Topical Index:
- Introductions [00:00]
- Recap of benefits of journaling [01:36]
- Not a destination - it's a process [05:21]
- Use what makes you comfortable [08:10]
- Write every day [08:41]
- Make it easy [[09:55]
- Don't edit yesterday's entries [12:02]
- Journaling groups [13:12]
- Be patient with yourself [15:02]
- Closing [17:43]
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Write About It, Part 1: Intro to JournalingRecording Date: February 5, 2024
Keywords: journaling, writing, keeping a journal, stress reduction, Our Parallel Paths, Gerry Arango, Geralyn Arango-Deeley, benefits of writing
Transcript: Download transcript HERE
Episode Summary: Over the next two episodes Gerry shares her writing journey – journaling. Journaling is a tool Gerry has long used as a means of personal expression, stress reduction, and problem solving. She feels journaling has provided her with a sense of clarity and perspective as she has travelled the Parallel paths of caregiving with her mother and friend, and continues to travel with her son Nic. Join us in this episode as Gerry introduces us to the gift of writing, and some tips on getting started. Gerry follows this up next episode with more tips on journaling as we navigate these Parallel Paths together.
Topical Index:
- Introduction [00:00]
- Holiday Stresses [02:04]
- Ruminating on our stressors [06:06]
- journaling - a long time habit [06:41]
- Caregiving for mom, Nic, and James [07:27]
- Writing as an outlet for emotions [09:07]
- From journal to memoir [10:26]
- Journaling is a story - your story [11:24]
- Benefits of journaling [13:16]
- Journaling is a safe space [16:52]
- More benefits of journaling [17:09]
- Closing [23:11]
Resources:
- Journaling for Emotional Wellness - Rochester Medical Center
- Your journal For Life - the Day One App
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Following Your Lead - an Interview with Teri BrewerPart of the Our Parallel Paths podcast series with Gerry Arango, Ed.D.
Recording Date: December 5, 2023
Transcript: Download Transcript HERE
Keywords: SAU1, Self-Advocates United as One, Teri Brewer, William Brewer, Disability, independence, supporting independence, self-advocacy, advocacy, transition
Summary: In this episode, Gerry interviews parent Teri Brewer about her journey supporting her son William to live a meaningful life, and her involvement with SAU1 (Self Advocates United as One) with their work in promoting self-advocacy for individuals with disabilities.
Teri shares her journey of discovering William's abilities and advocating for his needs, and the importance of having a strong support system. The main focus for Teri and William's future is finding way to support William in pursuing his dream to live independently. Teri’s interview emphasizes the importance of following our family members’ lead and celebrating their achievements along the way.Notes go here
Topical Index:
- Introductions [00:00]
- SAU1 (Self Advocates United as One) [03:01]
- How We Got Here [03:40]
- Summer of Tears [04:31]
- One Day At a Time [06:41]
- School Years [06:16]
- First Act of Advocacy [09:27]
- Self-Direction [11:00]
- Mom and Dad take a Vacation [12:51]
- Gaining Confidence [14:07]
- Following Wiliam's Lead [15:30]
- Preparing for a Future Without Us [17:23]
- Early Years - Finding Our Way Alone [18:29]
- Transition [22:17]
- The Importance of a Support System [25:43]
- Never Getting Over the Wonder [27:36]
- SAU1 revisited [30:49]
- Preparing for the Future [34:11]
- Closing [38:53]
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_Siblings’ Perspectives: A Conversation with Emily Holl and Courtney ArangoRecording Date: October 4,2023
Transcript: _Download transcript HERE
Keywords: SibShops, Sib20, SibTeen, Sibling Support Project, Sibling Leadership Network, siblings, Emily Holl, Geralyn Arango-Deely, Courtney Arango, Our Parallel Paths, sandwich generation, peronal futures planning, PATH, end of life planning
Summary: In this episode Gerry talks with two siblings – Emily Holl from the Sibling Support Project, and her own daughter, Courtney Arango – about their experiences growing up with their siblings who have disabilities, and the importance of planning for the inevitable time when parents are no longer in the picture. This important episode explores the many facets of caring for a sibling, the resources available, and the importance of building a network of support around you during this time.
Topical Index:
- Introductions [00:00]
- Siblings’ roles [01:20]
- Our family situation [02:49]
- Introducing Emily Holl – author and advocate [03:43]
- Introducing Courtney [05:23]
- The “sandwich generation’ [05:53]
- Courtney shares childhood perspectives [06:42]
- Courtney’s current thoughts – anticipating change [10:35]
- Emily’s journey [14:01]
- o Change driven by Peter
- o Planning a move to New York
- o Polices and procedures for funding eligibility requirements.
- o Investing in both of our futures
- o Caregiver from afar
- Finding People who share your experiences.
- Sibling Support Project
- o SibNet, Sib20, SibTeen, etc.
- o Understanding and Validating our experiences
- o Who lives my story?
- Friends and acquaintances’ reactions [27:17]
- Facing difficult conversations [28:32]
- o Include everyone
- o Have the conversation
- o Minimize the impact on everyone
- o It’s okay to have your own dreams
- All the pieces of planning [31:19]
- o Live in the moment
- o Have the conversations
- o Use your resources
- o PLANS CHANGE… it’s okay!
- o Re-visit now and then
- o Build in fun and relationships
- o What is the nightmare – confront it head on
- o Celebrate successes / progress
Resources
- ARC Center for Future Planning
- Sibling Support Project
- SIBSHOPS – Sibling Support Project
- The Future is NowCurriculum – Letter of Intent
- Connecting with Other Sibs
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Individuation - What I Want & Why It Matters with Maleita OlsonPart of the Our Parallel Paths podcast series
Recording Date: August 15, 2023
Transcript: Download Transcript HERE
Keywords: Maleita Olson, Gerry Arango-Deely, Our Parallel Paths, Individuation, transition, care-giving, care takers, caretakers, caregiving, adulthood, hover-mother, dignity of risk, independence, interdependence
Summary: Gerry talks with social worker / parent Maleita Olson about the issues faced when "launching" our young adults with disabilities into adulthood. Some topics included are hovering, dignity of risk, comfidence building, and more. This episode also includes a discussion about individuation -- identifying what we want for ourselves in our transition as caregivers, and why it matters that we explore these things.
Topical Index:
- Introduction [00:00]
- Indivdiuation [02:28]
- A shift in parenting: hover-mother [04:11]
- Fear of Failure [05:33]
- Failure to Launch [07:37]
- Who's filling the void> [10:25]
- Tips:
-
- We are not responsible if bad things happen [11:28]
-
- Risk taking can be good and healthy [12:01]
-
- Creating self-worth and confidence in kids [13:00]
-
- Teaching resilience [15:47
- Sharing the spotlight / focus [24:02]
- Generational and Cultural shifts [25:36]
- Who are we - what's our identify [28:26]
- Dealing with guilt [22:13]
- What happens when I am gone [34:43]
- Celebrating the launch [42:54]
- Closing [47:14]
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An Update From Gerry...Part of Our Parallel Paths: A Future For My Loved One With a Disability.... and For Me!
Recording Date: September 6, 2023
Transcript: Download transcript HERE
Keywords: Change, Individuation, remote supports, Our Parallel Paths, Gerry Arango, Geralyn Arango-Deely, navigating crises, dignity of risk, transition, disability, family, supports
Summary: Welcome back to Season 3 of Our Parallel Paths... In this episode Gerry shares a brief update of her, Nic, and their family's continuing journey towards their joint goals and dreams for the future. Gerry also supplies some hints for upcoming episodes. We hope you join us on Our Parallel Paths...
Topical Index:
- Introductions [00:00]
- Why an update? [01:32]
- Family changes [02:45]
- Individuation [04:23]
- Bumps In the Road - Supports and Health [05:37]
- A closer look at the future [10:29]
- Future episodes [12:00]
- Closing [12:25]
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More on Managing Supports - A Conversation with Bradley Beck Part Two part of the Our Parallel Paths series
Recording Date: May 1, 2023
Transcript: Download transcript here
Keywords: Our Parallel Paths, Managing Supports, Disability, Geralyn Arango, Geralyn Arango-Deely, Gerry Arango, Gerry Arango-Deely, Hiring support staff, Bradley Beck, supports broker
Summary: Gerry continues her discussion of managing the supports for your loved one as roles change. This is part two of Gerry's conversation with Bradley Beck, a support broker, who shares his perspectives from the "outside looking in".
Topical Index
- Introduction [00:00]
- Continuing the Conversation [01:04]
- Feedback - Self-assessment. [02:31]
- Providing feedback! [04:45]
- Tying feedback to raises [06:35]
- Building a diverse team [11:02]
- Providing acknowledgement that matters [12:54]
- Training and resources [16:26]
- Team building - an ongoing process [19:49]
- Patience [23:44]
- Closing [25:08]
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More on Managing Supports - A Conversation with Bradley Beck part of the Our Parallel Paths series
Recording Date: May 1, 2023
Transcript: Download transcript here
Keywords: Our Parallel Paths, Managing Supports, Disability, Geralyn Arango, Geralyn Arango-Deely, Gerry Arango, Gerry Arango-Deely, Hiring support staff, Bradley Beck, supports broker
Summary: Gerry continues her discussion of managing the supports for your loved one as roles change. She invites Bradley Beck, a support broker, to join in the conversation and share his perspectives from the "outside looking in". This conversation spans two episodes. Don't forget to listen to part two as well.
Topical Index
- Introduction [00:00]
- What is a supports broker [02:00]
- Releasing of roles. [03:33]
- Clear expectations! [04:34]
- Giving feedback [11:17]
- Trust and Empowerment [15:44]
- Building relationships [19:05]
- Closing / continuing the conversation [22:34]
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Gerry's Angels - 5 Tips for Managing Supportspart of the Our Parallel Paths series
Recording Date: April 4, 2023
Transcript: Download transcript here
Keywords: Our Parallel Paths, Managing Supports, Disability, Geralyn Arango, Geralyn Arango-Deely, Gerry Arango, Gerry Arango-Deely, letting go, promoting independence
Summary: Gerry discusses the transition of roles all caregivers go through as their loved ones become adults, and their supports are shifted to other caregivers. What are the challenges of managing supports for our adult loved ones while providing room for growth and independence?
Topical Index
- Introduction [00:00]
- Gerry's (aka "Charlie's") Angels [00:55]
- Who's the Boss? [03:32]
- You have to love checklists! [04:02]
- Gerry's Top Five checklist [05:25]
- Communicate [05:55]
- Delegate [09:45]
- Check In [12:30]
- Acknowledge their work [13:27]
- Understand [15:06]
- Closing [16:48]
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Letting Go is Hard to Do...An update from Gerry and Nick
Recording Date: February 3, 2023
Transcript: Transcript available for download HERE
Keywords: Gerry Arango, Geralyn Arano Deely, dignity of risk, letting go, hover mother, Eric Gall, transition, parallel paths, independence, inter-dependence, adulthood, disability, EmpoweringAbility.org, Ultimate Guide to Independence
Summary: Gerry shares an update as Nick's 25th birthday approaches. Discussed are issues of independence vs. inter-dependence, dignity of risk, letting go, and more.
Topical Index:
- Introduction [00:00]
- Celebrating Milestones [01:01]
- Happy Birthday Prefrontal Cortex! [02:30]
- Hover Mother [03:14]
- Friends along our paths [04:47]
- Ultimate Guide to Independence [05:22]
- -- Believe the Impossible [06:11]
- -- Get Out of the Way [07:48]
- -- Get Comfortable with Broken Plates [08:49]
- -- Look Out for the Hero... or she-ro [09:57]
- Closing [13:40]
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S2, Ep 2 - Interview with Linda Carmona-BellSubtitle: Parent / Advocate / Educator
Recording Date: November 15, 2022
Summary: In this episode Gerry interviews Linda Carmona-Bell, a member of PEAC (Pennsylvania Education for All Coalition). Linda serves as president of PEAC, and has worked for over 30 years for the New jersey Department of Education. She has experience in bi-lingual education, educational technologies, and more. Linda shares the journey of her and her daughter, Selina, as they navigate Selina’s journey through school, to the job search and more.
Keywords: Transition, Disability, Our Parallel Paths, Geralyn Arango=Deely, Linda Carmona-Bell, C2P2, PEAC, PATH, transition planning, personal futures planning
Topical Index:
Opening [00:00]Introductions [01:18]Exhaustion, Worry, Pride [02:31]Two Visions [03:09]Confidence & Competence – Partners in Policy Making (C2P2) [04:04]What Do You Need? [06:13]the vision drives the planning [09:25]Let her be her [10:57]Transition planning at age 5 [12:13]Customized Employment – schedules and planning [14:29]what it looks like for me, the parent [17:24]taking care of myself [18:57]asking for help [20:46]what I wish I knew… [21:31]Language matters [22:44]We are a team – my voice matters as well [25:30]I was able to make a change in the system [29:24]Good intentions [31:49]next steps [34:58]closing [38:51
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Interview with Eric Goll (Sibling / Advocate) Creating an Awesome Ordinary Life...
Recording Date: June 22, 2022
Summary: Gerry interviews Eric Goll, founder of empoweringability.org website and podcast. Eric provides resources, guides, and supports to families struggling to create ordinary lives for their family members and themselves. Listen as Eric shares his journey and lessons learned as Sarah's brother, supporter, and advocate, to creating an awesome ordinary life for both Sarah and himself. We hope you enjoy this and all of the episodes in Our Parallel Paths...
Transcript: Download transcript here.
Keywords: Eric Goll, sibling, awesome ordinary life, person centered supports, empoweringability.org, disability, autism, independent living, Gerry Arango, parallel paths, our parallel paths, advocacy, social model of support, social model
Topical Index:
- Overview [00:00]
- Introductions [01:11]
- Importance of a sibling's voice [02:37]
- who will be the caregiver [04:11]
- family in crisis [05:55]
- making decisions [06:40]
- social model of support06:13]
- importance of relationships [11:38]
- lack of support from the system [14:18]
- making connections [15:42]
- imagining new possibilities [16:36]
- contrast of opportunities [18:22]
- Lessons learned [21:22]
- reclaiming the role of sibling [23:01]
- taking care of myself [24:30]
- having difficult conversations [28:30]
- Closing [34:56]
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Our Parallel Paths: Season One Wrap-Up Subtitle: Take-aways & Reflections
Recording Date: June 27, 2022
Transcript: Download transcript here.
Keywords: Our Parallel Paths, Gerry Arango, Ruth Landsman Dianne Perry, Darcy Elks, Suzanne Muensch, dignity of risk, self-care, for caregivers, information sharing, when the caregiver passes, setting boundaries, creating a support network, Gerry Arango
Summary: Gerry shares some thoughts and reflections she has had as Season One of "Our Parallel Paths: A Future for My Loved One With a Disability... & Me! "comes to a close. I you are new here, we encourage you to listen to all of the season one episodes, and to join us for season two!
Topical Index:
- Introduction [00:00]
- Applying it to ourselves [01:52]
- Learning to say no [03:30]Ask for help [03:46]
- Find you drive [04:30]
- Be a fried to others [06:01]
- Information Sharing [06:48]
- Tools to use [07:57]
- Dignity of Risk [10:18]
- Resiliency [11:21]
- Closing [12:54]
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Ep. 05 - Interview with Darcy Elks (Parent/Advocate) CHALLENGES, STRUGGLES, & VICTORIES...
Recording Date: June 22, 2022
Summary: Gerry interviews Darcy Elks, parent / advocate / and presenter. Darcy shares the struggles, challenges, and yes - the victories of her family's journey towards Mary's future, and their own. Darcy also shares the emotions journey as they navigate support systems, education, and the dignity of risk. We hope you enjoy this and all of the episodes in Our Parallel Paths...
Transcript: Download transcript here.
Keywords: Darcy Elks, risk, dignity of risk, person centered supports, setting goals, sharing the vision, planning tools, Our Parallel Paths, Gerry Arango
Topical Index:
- Overview [00:00]
- Introductions [01:24]
- Hard times and What We've Learned [02:32]
- The Vision - Mary would be missed if she wasn't there [03:46]
- Preschool [04:22]
- Elementary School [05:12]
- The good times - Fifth Grade through middle school [06:13]
- The challenges of High School [06:42]
- Going back to the vision [08:59]
- West Chester University [09:46]
- Dignity of Risk [10:45]
- What's Next [13:13]
- What I've learned along the way [14:45]
- Working in a theater [17:09]
- Our vision for ourselves [20:22]
- Enjoying my daughter [22:23]
- Some resources to share [27:03]
- Closing [32:11]
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Ep. 4 - Interview with Suzanne Muench - Sibling Subtitle: Expectations
Recording Date: June 1, 2022
Transcript: Download transcript HERE
Keywords: disability, siblings with disabilities, disabled siblings, expectations, family dynamics and disability, disability and family balance, disability and support options, letting go, changing roles, Sibshops, sibling support, Suzanne Muench
Summary: Gerry interviews Suzanne Muench, whose brother John has a disability. Listen to a poignant conversation as Suzanne shares balancing expectations with reality, changing roles and her journey towards self-care. Suzanne shares her struggles navigating the change of roles from sibling, to caregiver, and back again.
Topical Index:
- Overview [00:00]
- Introductions [01:23]
- Choosing what to share [03:11]
- Importance of family balance [04:14]
- Defining my career [05:19]
- Lack of conversation [07:01]
- Shifting roles from sibling to caregiver [09:19]
- Finding the right supports [10:26]
- Reclaiming the role of sibling [11:24]
- Personal struggles and self-care [13:34]
- Balancing the needs of care-giver and family [17:57]
- What I wish I knew [18:10]
- Conversations vs. expectations [19:22]
- Empowering Families [20:30]
- Acknowledging successes [23:51]
- Letting go of control [25:03]
- A positive change for all [26:44]
- Sibshops - supporting the sibling's journey [29:55]
- Some resources to share [32:16]
- What's next for Susanne and John [37:07]
- Closing [39:11]
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Ep. 3 - Interview with Ruth Landsman - Parent / Advocate Subtitle: Having the Tough Conversations
Recording Date: April 29, 2022
Transcript: Download transcript HERE
Keywords: Estate planning, special needs trust, difficult conversations, caregiver, caregiving, independent living, birth of a child with a disability, special education, The Parents' Exchange,
Summary: Gerry interviews Ruth Landsman, executive director of Parents' Exchange, and advocacy group for parents of children with disabilities. Ruth shares her journey from learning of Mitchell's disabilities, to her conscious planning for a future for Mitchell without her. Ruth shares the exploration of difficult conversations, and the importance of having those conversations earlier rather than later.
Topical Index:
- Overview [00:00]
- Introductions [02:18]
- Pregnancy and birth [02:45]
- The changing vision [03:47]
- Connecting with other parents [05:55]
- Transition [07:43]
- Continuity of housing and supports [10:07]
- What happens when I am gone [12:30]
- Preparing a letter of intent [15:17]
- Starting the shift of support now [16:36]
- Financial planning [17:57]
- Mitchell's apartment [19:23]
- Regret of missed milestones [24:27]
- We have moved [25:56]
- Have the conversation / Ask the questions [27:32]
- Plan now for the future [29:19]
- Closing [31:48]
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Ep2 - Interview With Diane Perry - Parent / Advocate Recording Date: Aprili 22, 2022
Transcript: Download transcript HERE
Keywords: PATH, Person Centered Planning, vision board, IEP, transition, transition planning, support system, caregiver, shared visions, parallel paths, Diane Perry
Summary: Diane Perry shares with Gerry the various tools she has found helpful in creating a vision for her son David's future, but also for her own. Join us as we travel the Parallel Paths of David and Diane Perry.
Topical Index:
- Overview [00:00]
- Introductions [01:25]
- Choosing a topic [02:20]
- The vision of an active life [03:24]
- Sharing the vision [05:16]
- A Tax-Paying Citizen [07:36]
- David takes over the vision [09:06]
- Fears and concerns [10:37]
- Diane's Path [11:33]
- Pitfalls and celebrations [15:31]
- A Strong support system [17:46]
- What I Wish I Knew [21:09]
- The Dark Places [23:02]
- Graduation Day - The Vision is Real [27:22]
- The importance of the tools [31:16]
- What's next [32:53]
- Closing [34:39]
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Ep1 - Our Parallel Paths with Geralyn Arango, Host & Parent Recording Date: March 24, 2022
Keywords: disability, transition, future planning, adults with disabilities, independence, planning, dignity of risk, finding balance in our families, caregiving, family life
Summary: Welcome to Our Parallel Paths - A Future for My Loved One With a Disability... And Me! On Our Parallel Paths, we'll talk about creating a promising future for the child with an intellectual disability who becomes an adult and a promising future for ourselves as our role as parent, family member, caregiver. Whoever we are evolves alongside them. There's more than one path, more than one future to talk about. And that's why we're here. Some remarkable people will share their stories in upcoming episodes. I'll be listening with you, and I'll have some questions for our guests too.
Transcript: Download Transcript Here
Topical List:
- Introductions [00:00]
- Overview [01:26]
- About Gerry [02:43]
- Plans change [04:26]
- Dignity of Risk [08:16]
- Striking a Balance [09:20]
- Gerry Interview... Gerry! [10:21]
- Closing [19:13]
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