The Sibling Leadership Network

Certified Sexuality Educator, Terri Couwenhoven, discusses barriers for our siblings with disabilities getting sex education and gives us some great resources and advice to help us support our siblings who are seeking romance. Access the transcript of this episode here.Acceda a la transcripción en español."Listening and helping your sib feel heard are really important"  —Terri CouwenhovenResources in this episode:Terri Couwenhoven MS, CSEElevatus trainingsDiversities in sexuality handoutsBoyfriends & Girlfriends: A Guide to Dating for People with DisabilitiesCircles:  Intimacy and RelationshipsCircles appNational Council on Independent Living Video SeriesAmaze.orgreal-talk.orgAdult Down Syndrome Center resource pageMaking Authentic Friends AppSpecial Bridge AppSex Talk for Self-Advocates Webinar SeriesSLN Self-Advocates Resources pageDave HingsburgerSupport the show

This month, we speak with the Director of Advocacy for the Autistic Self Advocacy Network, Zoe Gross, all about plain language; what it is, why it's important and where and how to ask for it.  Access the transcript of this episode here.Acceda a la transcripción en español."Get things out of the subtext of what you’re saying and into the plain text."  —Zoe Gross"Become awake to the wonderful world that is plain language and spot all the places that it can be brought into your life."  —Zoe GrossResources in this episode:Autistic Self Advocacy NetworkASAN resource libraryPlain Language COVID-19 ResourcesOne Idea Per Line: A Guide to Making Easy Read ResourcesSARTAC2023 Series of Easy Read/Plain Language Webinars for Government and Non-Profit AgenciesPlain Truth ProjectSupport the show

This month, Founder of the Natalie Project, Julie Neward, shares her story, discusses statistics and causes of sexual assault in the disability community and tells us about how we can advocate for change with our siblings. PLEASE NOTE: This podcast episode is about sexual assault and may contain content that is unsuitable for listeners under the age of 18 and may contain triggers for some listeners. Listener discretion is advised.  Access the transcript of this episode here.Acceda a la transcripción en español."I really do want to lean on our sib community to take action on this issue, because at the end of the day...we [siblings] will most likely have to face the issue of sexual abuse given the staggering numbers."  —Julie NewardResources in this episode: the Natalie ProjectContact Julie Neward at julie@thenatalieproject.orgThe Disability Without Abuse ProjectNPR Series: Abused and BetrayedCombating Violence and Abuse of People with Disabilities: A Call to Action by Nancy Fitzsimons M.S.W. Ph.D.The Rape, Abuse, & Incest National Network: Sexual Abuse of People with DisabilitiesThe Rape, Abuse, & Incest National Network: Recovering from Sexual ViolenceRight Care Now ProjectOptions for All ProductionsPediatric Epilepsy Surgery AllianceDiana Pastora Carson, M.Ed.ElevatusMad Hatter Wellness Sexuality for All Abilities 1st Edition by Katie Thune and Molly Gage Nicky’s LawDisability Rights CaliforniaCalifornia Self-Determination Program NetworkTarana J. Burke and the Me Too movementKelly's Hollywood FilmSupport the show

This month, we talk with Harriet Redman, founder of one of SLN's first chapters, Wisconsibs, and founder of SLN's newest chapter, Oregon Sibs, Nikki Donnelly.  We discuss why sib meeting spaces are so important and how you can get involved or start your own chapter. Access the transcript of this episode here.Acceda a la transcripción en español."The power in having people in your community that can help you navigate through this sib life."  —Nikki Donnelly"Don’t give up…there’s all kinds of reasons to stop, but don’t. Just keep going…and when you’re feeling discouraged give an SLN chapter person a call or an email."  —Harriet RedmanResources in this episode:SLN Chapters pageWisconsibsOregon Sibs MeetUpThe Sibling Survival Guide bookSibshops bookSibshops on Siblings Support ProjectOregon FMLA informationWhat About Me? by WisconsibsSibsack by WisconsibsJourney Forward by WisconsibsSiblings Choice Award by WisconsibsWisconsibs Read book clubWisconsibs event calendarIntro to Sibs by Oregon SibsOregon Sibs AnnouncementContact Harriet Redman: info@wisconsibs.orgContact Nikki Donnelly: nikki.donnelly@oregonsibs.orgSupport the show

This month, we speak with the SLN's Co-Chairs of Policy and Advocacy, Tiffany Banks and Nina Bihani.  We discuss why advocacy is so important for sibs, the many ways sibs can get involved in policy & advocacy, the challenges siblings face in policymaking and current issues being worked on by sibs.Access the transcript of this episode here.Acceda a la transcripción en español"If you're not showing up, you're not going to be a part of that important decision-making process"—Nina BihaniResources in this episode:SLN Policy & Advocacy PageSLN June Policy & Advocacy NewsletterHealth PassportLetter of IntentFMLA Reform: The Caring For All Families ActSSI Penalties: Arc InfoTechnology AccessHousing Access: From the ArcThe Americans with Disabilities ActSLN Future Planning Resources PagePast SLN PodcastsDisability Policy SeminarSign up for SLN NewslettersThe Arc Future Planning ResourcesHealth Advocates While in HospitalThe Arc Policy & Advocacy ResourcesPartners in Policymaking TrainingRight to Access Health RecordsDeath and End of Life ResourcesTiffany Banks: tiffany.banks@siblingleadership.orgNina Bihani: nina.bihani@siblingleadership.orgSLN Policy & Advocacy Email: policy.inquiries@siblingleadership.org"What you are able to bring to the table is worthwhile, no matter how small." —Tiffany Banks"Your lived experience is expertise. " —Tiffany BanksMusic Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz Music promoted by https://www.free-stock-music.comSupport the show

This month we speak with the SLN's new Executive Director, Kaitlin McNamara, about her sibling experience, resources she has found helpful and her vision for the future of the sibling movement at SLN.  Access the transcript of this episode here.Acceda a la transcripción en español"We have to be having some very serious conversations about what we want the next 40 years to look like and not resting on the laurels of the really important disability movement work of the last 40 years."—Kaitlin McNamaraResources in this episode:Future Planning ResourcesFinancial Planning ResourcesMental Health and Self-care ResourcesSLN Youtube ChannelSLN State ChaptersSLN Facebook PageSLN Facebook GroupSibnet Facebook GroupSibling Support Project Facebook GroupSibteen Facebook Group"…siblings have a real opportunity at this moment to partner with their sibling with a disability…" —Kaitlin McNamaraMusic Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz Music promoted by https://www.free-stock-music.comSupport the show

This month, we speak with sib-in-laws Sumithra Murthy and Cory Hartman about their experiences as sib-in-laws and hear their advice for sibs and potential future sib-in-laws.Access the transcript of this episode here.Acceda a la transcripción en español"We are the people who are insiders, outsiders." —Sumithra Murthy"This is new to us"—Cory HartmanResources in this episode:Department of Disability and Human Development at the University of Illinois at ChicagoFamily Caregiver Alliance National Alliance for CaregivingThe ArcThe Sibling Leadership NetworkSib-in-Laws Facebook GroupNational Institute for the Empowerment of Persons with Intellectual Disabilities NIEPIDAshadeepNayi DeshaParivarImpact Magazine Sibs Feature Issue"Our opinions and perspectives also need to be considered in decision making processes."  —Sumithra MurthyMusic Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz Music promoted by https://www.free-stock-music.comSupport the show

In this special National Siblings Day 2023 episode we hear the stories of 2 siblings with different backgrounds and ask them about their visions for the sibling community.We are joined by social work doctoral student Aaron Quick who is the Public Policy Fellow on the Georgia Council on Developmental Disabilities, and by Social Impact Consultant, Sukanya Mukherjee.Access the transcript of this episode here.Acceda a la transcripción en españolResources in this episode:2020 protestsGeorgia Council on Developmental DisabilitiesThe Sibling Leadership NetworkSibnet on FacebookList of Disability Councils, State-by-state below the podcast description on the SLN blogAaron's Brother's books:  supercreativeadventures.comResources for Self-Advocates (including a webinar series on love and sex)Dating, Love & Sexuality from a Sibling’s Perspective with Sheena BrevigSibshopsMusic Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz Music promoted by https://www.free-stock-music.comSupport the show

This month we discuss mental health issues and resources for sibs with sib and psychologist, Emily Graesser.Access the transcript here.Acceda a la transcripción en españolJoin the SLN for our FREE Mindfulness program!"You are as deserving of compassion, and support and help and health and well being, as your sib. And in fact, you're going to do a better job with your sib if you're tending to those things."Resources in this episode:Learn to be Mindful: A Virtual Program for Autistic Adults and Their SiblingsAntioch CollegePCA = Patient Care AssistantPsychology TodayBetter HelpDialectical Behavioral Therapy (DBT) - MindfulnessMindfulness-Based Cognitive Therapy (MBCT)Acceptance and Commitment Therapy (ACT)Call 211 (a government-established hotline that connects people to community or government agencies)988lifeline.orgWalk-In Counseling Center Provides Free Mental Health Services (Minnesota)EMDR for traumaMyStrengthPTSD CoachOther VA AppsSLN Policy & Advocacy SiteThe Arcthenadd.orgSLN 2019 National ConferenceSibnetSLN’s Mindfulness ProgramMusic Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz Music promoted by https://www.free-stock-music.comSupport the show

We kick off 2023 by speaking about sibs and access to technology with one of our past Chairs and Associate Research Professor at the University of Kansas, Shea Tanis. Resources:SLN Endorses The Declaration of The Rights of People with Cognitive Disabilities to Technology and Information AccessTechnology FirstSelf-DeterminationAssistive Technology ActsDigital Equity ActState Assistive Technology Program InformationAffordable Connectivity ProgramBroadband Equity, Access, and Deployment (BEAD) ProgramNational Network of University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD)UCEDDs by State“digital equity forums” Google searchState of the StatesAppendix K WaiversARPA FundsAmerican Rescue PlanSibNet on FacebookSibling Support ProjectConsumer Electronics ShowcaseHaptic technologyTactile InternetMusic Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz Music promoted by https://www.free-stock-music.comSupport the show

This month we speak with Social Policy Researcher,  Ariella Meltzer, about the similarities and differences in sibling support all over the world. Access the transcript of this episode here.Acceda a la transcripción en españolResources and terms mentioned in this episode:Contact Ariella Meltzer at:Email: a.meltzer@unsw.edu.auTwitterLinkedInPublications from Ariella’s research are available at:What is ‘sibling support’? Defining the social support sector serving siblings of people with disabilitiesThe operation of the social support sector serving siblings of people with disabilities: a cross-country analysis(These publications are behind a paywall for many. If you need help accessing a free copy, please email Ariella directly.)Centre for Social Impact at The University Of New South WalesCommunity of practice definitionIf you know of a group that’s primary focus is to support siblings of people with disabilities and you think they would be interested in learning more about this Community of Practice, feel free to contact info@siblingleadership.org"Sibling support really needs consistent recognition everywhere."Support the show

This month we discuss challenges and blessings unique to sibs in the Baby Boomer and Gen X generations and hear some amazing advice and words of wisdom.  Our guests are Lynne Calloway and Barbara Corley of SilverSibs.Access the transcript of this episode here.Resources and terms mentioned in this episode:Sibling Leadership NetworkSilver SibsOhio SIBSHamilton county DD servicesCharting the LifecoursePickway County Board of Developmental DisabilitiesOhio SIBS Sib TalksSiblings with a MissionSibling Support ProjectSibteenSibnetSib20SLN COVID-19 Resource CenterWhere The Journey Leads; A Conversation with Silver Sibs (VIDEO)TERMS:DSP (Direct Support Professional)Dagwood sandwichFMLALoco ParentisSupport the show

Our Executive Director, Katie Arnold joins us to talk about why voting is so important to our community and gives some ideas and resources to help you and your siblings to get out there and vote.Access the transcript of this episode here.Resources and terms mentioned in this episode:The SLN's Voting CenterSABE: Self Advocates Becoming EmpoweredThe Arc Voting ResourcesThe American Association of People with Disabilities (AAPD)RevUp!The National Disability Rights Network the Brennan Center for Justice the Bazelon CenterState Laws Affecting the Voting Rights of People with Mental Disabilitiesthe Autistic Self-Advocacy Network A Self-Advocate’s Guide to Voting in the U.S.Americans with Disabilities Act "Over 38 million people with a disability are eligible to vote, which is close to 1 out of every 6 voters."Support the show

In lieu of the SLN’s 15th Anniversary Celebration in October 2022, this month, we are joined by our Executive Director, Katie Arnold to talk about the history of the sibling movement, our current struggles and SLN’s vision for siblings in the future.Transcript of this episodeResources discussed in this episode:SLN Mission StatementSign Up for SLN News and Get InvolvedSLN State ChaptersSLN Past ConferencesBIPOC Sibling RoundtablesThe SLN PodcastFuture Planning ResourcesSelf-Advocacy ResourcesSLN Research PageSLN Policy & Advocacy PageDEI CommitteeEquity & Inclusion Scholarship Fund“The future of the sibling movement is really in all of our hands." -Katie ArnoldSupport the show

This month we discuss financial planning for siblings with  Colorado State Treasurer and brother, Dave Young and Founder and President of Oak Wealth Advisors and brother,  Mike Walther.Access the transcript of this episode here.Resources mentioned in this episode:VestlifeHighlights:“I entered elected office because my sister was struggling to get essential services." -Dave Young“Find the network in your community." -Mike Walther“You have to take the first step and listening to those trusted voices is a good way to start." -Dave Young“Take a break...celebrate the milestones:" -Mike WaltherSupport the show

Disability Rights Activist, Emily Ladau joins us to talk about self-advocacy, sibling support and her book, Demystifying Disability: What to Know, What to Say, and How to be an Ally.Transcript of this episodeResources discussed in this episode:Demystifying Disability: What to Know, What to Say, and How to be an AllyEmily's Ladau: Website | Facebook | Twitter | LinkedIn | InstagramSLN Self-Advocate Resources pageSLN COVID-19 Resource CenterSocial media accounts recommended by Emily:https://www.instagram.com/disabilityreframed/https://www.instagram.com/upgradeaccessibility/https://www.instagram.com/diversability/https://www.instagram.com/sitting_pretty/https://www.instagram.com/nina_tame/https://www.instagram.com/jtknoxroxs/https://www.instagram.com/kamredlawsk/https://www.instagram.com/techowlpa/https://www.instagram.com/andraealavant/https://www.instagram.com/fidgets.and.fries/Give us your feedback! Tell us what you think of the SLN Podcast so far. Quotes from this episode:“We need more allies that are willing to do the work of centering the disability community.""The most important thing is to know that you have a right to speak up for yourself.""Siblings can be accountability partners for each other in the world of advocacy.""Disability doesn't exist in a vacuum and no person is just disabled.""It's this strange tug-of-war that we experience as a disabled community where our lives are being devalued, and yet we're being told, "This is for your own good.""In this episode:00:22 - Introduction03:39 - What is the difference between an advocate, a self-advocate and an ally? And In your opinion, which do we need more of?06:55 - Why is self-advocacy so important?08:17 - What are some ways that siblings can help support each other in advocacy?09:51 - How can different intersections of identity influence a self-advocates advocacy journey?11:54 - How has the COVID-19 pandemic changed the self-advocacy landscape and how are advocates overcoming related challenges?16:18 - What are some other current major challenges that self-advocates face and how can we support change in these areas?18:19 - Are there any resources that you can recommend for any new and/or seasoned self-advocates out there?19Support the show

This month we speak with three sibling employment experts to discuss sib employment and how we can best support and advocate with our siblings with disabilities.  Our guests are:Ryan Rotundo, Sibling, Manager of Employment Programs at the National Down Syndrome Society (NDSS) (rrotundo@ndss.org)Byran Dai , Sibling, CEO and Co-founder of Daivergent  (bdai@daivergent.com)Mike Carmody, Sibling, Executive Leader, Opportunity Knocks, (mike@opportunityknocksnow.org)Access the transcript of this episode here.Resources mentioned in this episode:CEO Commission for Disability EmploymentSLN COVID-19 Resource CenterMicrosoft Career ConnectorInclusivelyList of State AgenciesList of State Vocational RehabsRangamSpecial OlympicsBuddy WalksTim's PlaceNorth Carolina Council in Developmental DisabilitiesWIPA (Work Incentives Planning and Assistance)CWIX (Community Work Incentive Coordinators)Section 14CHighlights:“Disability, non-disability; finding employment is hard." -Byran Dai“There are abilities beyond what they may see for that family member with a disability and sometimes siblings get a front row seat to that” -Ryan Rotundo“We have that unique position of being a built-in ally.” -Byran Dai“When I try to create a better life for him, I'm creating a better life for myself too.”  -Mike Carmody“Strong talent is going to come from this community.”  -Byran DaiIn this episode:00:51 - Introductions04:18 - Currently, just under 18% of individuals with disabilities in the US are employed.  Why do you think that number is so low?08:31 - What challenges or roadblocks do our siblings with disabilities face when trying to be gainfully employed?12:30 - Are racial discrimination and gender inequity concerns for our siblings as well?14:03 - What role can siblings play in supporting their brother or sister with disabilities in employment?  21:58 - How can we, as siblings, best advocate with our siblings with disabilities for inclusive and equitable employment opportunities?26:05 - How has the COVID-19 pandemic changed employment for individuals with disabilities and their families?31:09 - How has being a sibling of an individual with disabiSupport the show

In this episode we discuss spirituality for sibs and supports for our siblings with disabilities to participate in faith-based communities.  Our guests are Dr. Sarah Hall from the Institute on Community Integration, University of Minnesota and Texas A&M doctoral student Sehrish Shikarpurya.Access the transcript of this episode here.Highlights:“Her dedication is inspiring for me and kind of uplifting in my own faith journey.” -Sehrish Shikarpurya“As siblings we can say, he's going to make noise and that's OK.” -Dr. Sarah Hall“To have another layer of exclusivity is really hard to think about and manage.” -Sehrish Shikarpurya“How do you support someone with a faith different than your own?”  -Dr. Sarah Hall“It's OK to have a journey with your sibling or just a journey on your own.”  -Dr. Sarah HallIn this episode:Introductions: 00:00:48Being a Sib & Spirituality: 00:02:38Challenges in Faith-Based Communities 00:5:43Benefits of Spirituality: 00:11:51Supporting Our Siblings: 00:15:09Resources: 00:18:17Identity & Spirituality: 00:21:46Lacking Resources: 00:24:56How to Influence Change: 00:30:35Impact of the Pandemic: 00:36:25Words of Encouragement: 00:39:06siblingleadership.orgSupport the show

In this special National Siblings Day 2022 episode we hear the diverse stories of 3 siblings with very different backgrounds and explore how peer support has played a vital role in their sibling journeys.We are joined by SLN's Board of Directors Chair, Shawnnita Buckner, SLN's Board of Directors Secretary, Stephanie Lanham and Co-Founder of Saarthi sibling support group, Piyush Mishra.Access the transcript of this episode here.In this episode:Introductions: 00:00:52Siblings' stories: 00:04:33The impact of being a sibling of color: 00:17:57Meeting another sib for the first time: 00:26:46The role of peer support: 00:31:48Impact of the pandemic on peer support: 00:37:21Hopes of the future: 00:43:42Celebrating National Siblings Day: 00:45:11National Siblings Day events information: 00:47:26Some resources discussed in this episode are:Calendar of events for National Siblings Day 2022SLN's April Sibposium on April 27thSLN's COVID-19 Resource CenterSaarthiBIPOC Sibling Roundtables Become a member of the SLN to access videos of the 2021 ConferenceHighlights:“Being a person of color and kind of navigating through this journey of being a sibling was difficult. I didn't have those sibling relationships that I now know that are so very important in life.” -Shawnnita Buckner“The beautiful people that I've met have introduced me to organizations that I serve on today, and they provide refuge in an overwhelming world.” -Stephanie Lanham“The pandemic really helped us in building the community and getting out the name of siblings in the disability circles in India…but when the second wave of COVID hit in India, it was extremely devastating.” -Piyush Mishra“Whether I'm venting, crying or sharing a success story, having that support is just so important and impactful in my life.” -Shawnnita BucknerSupport the show

In this episode we discuss some ways that siblings of individuals with disabilities can experience grief & loss throughout their lives.  We also discuss various resources and methods for dealing with different forms of grief & loss.  The sibs also share some of their favorite memories with their siblings that they have lost."When my brother passed away I felt immediately lost. Not just the loss of him, but lost." -Tara ConleyOur guests in this episode are:Tara Conley - Former President and Vice President, co founder, current Independent Consultant for SUPPORTING ILLINOIS BROTHERS AND SISTERS – S.I.B.S. Zach Rossetti - Associate Professor of Special Education Boston University & SLN Co-Chair of ResearchNora Handler - SLN Illinois State Chapter Representative and Board Member of SUPPORTING ILLINOIS BROTHERS AND SISTERS – S.I.B.S.Shruti Tekwani - Mental Health Counselor, Life Coach & Sibling In this episode:Introductions: 00:00:42 Personal Experiences with Grief: 00:13:41Disenfranchised Grief and Survivor’s Guilt: 00:25:05 Grief and Loss from Death and Support: 00:38:01 Grief During the Holidays: 00:56:04  BIPOC Grief Experience: 00:59:52Grief During COVID-19: 01:05:01 Sharing Memories: 01:07:01 Access the transcript of this episode here.Some resources discussed in this episode are:SLN's Grief & Loss Resources PageS.I.B.S (Supporting Illinois Brothers and Sisters)The Todd Rossetti Memorial FundThe Loss of a Special Needs Sibling Facebook GroupSib Grief Webinar by Shruti TekwaniThe SLN NewsletterBecome a Member of the SLNSLN's COVID-19 Resources PageKnow Your Rights: People with Disabilities Can Have a Supporter in the Hospital during COVID-19SibNet Facebook GroupUddina (Shruti Tekwani)Grief Speaks: Cultures and GriefSupport the show