Tag Archives: educational advocacy

Episode 41: Help Today, Help Tomorrow

December 27, 2022Episodesadvocacy, community, educational advocacy, guardianship, IEPs, Join Our Place, legal planning, MassMutual, medicaid, Our Place, social security, special needs, special needs trusts, SpecialCare, TSC, TSC Alliance, tuberous sclerosis, tuberous sclerosis complextsc-now

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In the final episode of TSC Now in 2022, host Dan Klein connects with two incredible advocates for individuals with disabilities and learns how families can find support to help them with both everyday and long-term decisions for their loved ones.

First, Dan chats with Kelly Piacenti, Head of Special Care at MassMutual (01:24). Kelly shares how her experience managing care for her son with special needs helps her support other parents as they make legal decisions for their children. She debunks common myths about the cost of financial planning, when to start and the need for a special needs trust. She also talks about the importance of a letter of intent as a first step to making a plan and shares what information should be included in a letter of intent. To learn what SpecialCare at MassMutual can do for your family, visit their website or contact Kelly Piacenti at kpiacenti@massmutual.com. You can get additional resources for estate and financial planning in the Resources section of the TSC Navigator.

Next, Dan talks to Megan Cortjens, Executive Director of Our Place (27:37). Our Place is an online community where families with disabilities can connect with other families, share their experiences, find resources in their community, and get assistance from experts on a wide range of topics, including taxes, IEPs, travel, waiver applications and more. Megan shares how the site came to be and she is trying to break silos of information by creating a single place where the disability community can find resources on whatever their biggest challenges are. She shares about some of the major features of the site, including the Knowledge Center featuring easy-to-understand videos on various topics, and the Medicaid map where users can find Medicaid providers in their area. You can learn more about Our Place by going to joinourplace.com.

Links and Resources

Learn more about SpecialCare and MassMutual: https://www.massmutual.com/lp/specialcare
Watch a Lunch & Learn interview with Kelly: https://youtu.be/6lfttMG0L2s
Watch a presentation from Kelly on Guardianship Options, Financial Planning and Government Benefits from our 2021 E-Webinar Series: https://www.youtube.com/watch?v=18ppVaLQZko&ab_channel=TSCAlliance
Learn more about Our Place: https://www.joinourplace.com/
Review our aging caregiver checklist: https://www.tscalliance.org/wp-content/uploads/2021/09/Aging-Caregiver-Checklist-.pdf
Explore our Navigation Guides to understand what to expect at each stage of life: https://www.tscalliance.org/individuals-families/publicationsandsample-letters/
Learn more about special needs planning from the Special Needs Alliance: https://www.specialneedsalliance.org/
Learn more about special needs trusts: https://www.natlawreview.com/article/understanding-special-needs-trusts

This podcast is sponsored by:

Episode 27: Going Back to School and Caring for the Caregiver

September 1, 2021Episodesadvocacy, anxiety, coronavirus, COVID-19, depression, educational advocacy, IDEA Act, IEP, IEPs, Individual Education Plans, Individuals with Disabilities Education Act, stress, trauma, TSC, TSC Alliance, tuberous sclerosis, tuberous sclerosis complextsc-now

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In Episode 27 of TSC Now, host Dan Klein learns how parents can prepare for the start of a new school year despite the ongoing pandemic. Dan also talks to a licensed professional counselor to get advice on how parents and caregivers can cope with the stress, anxiety and trauma the last year and a half has caused, so that they are looking out for their own well-being in addition to supporting their loved ones with TSC.

First, Dan talked to Lilian Ansari, TSC Alliance Community Programs Resource Advisor (01:13). She gives helpful advice and tips on making decisions about in-person schooling, ensuring that Individualized Education Programs (IEPs) make up for lost learning that may have occurred while students were at home, and how parents can most effectively communicate with their IEP team. Lilian also shares the resources and support available from the TSC Alliance to help parents effectively advocate for their kids in their school system.

You can access all of our School resources here. If you have general school-related questions you can call Shelly Meitzler, Community Program Manager East, at (800) 225-6872 or email her at smeitzler@tscalliance.org.

Then, Dan talks to Latrice Hamilton, a licensed professional counselor at Journey to New Beginnings. With many TSC caregivers feeling the stress and anxiety of the ongoing pandemic in addition to sending kids back to school, Latrice offers some helpful advice on how to manage stress, communicate effectively with loved ones, and ask for help so that parents can make sure they are taking care of their own mental well-being in addition to caring for their loved ones with TSC.

All of the TSC Alliance’s COVID-19 resources can be found at www.tscalliance.org/covid-19. If you need immediate support from the TSC Alliance you can call our emergency hotline 9 am – 9 pm Eastern: (240) 463-7250.

Resources and Links

TSC Alliance Education Publications: https://www.tscalliance.org/individuals-families/school-issues/
TSC Alliance IEP Intake Form: https://www.tscalliance.org/iep-intake-form/
TSC Now Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School with Lilian Ansari: https://tsc-now.blubrry.net/2019/08/16/episode-4-educational-issues-in-tsc-and-how-to-advocate-for-your-child-with-lilian-ansari/
ABC to SAP: Why Your Child Needs a Seizure Action Plan Webinar: https://youtu.be/V1h7rVo58Po
SAP Coalition Virtual Backpack: https://seizureactionplans.org/virtual-backpack/
Butterfly Hug Method for Bilateral Stimulation: https://emdrfoundation.org/toolkit/butterfly-hug.pdf

Episode 16: COVID-19 and Back to School

August 28, 2020EpisodesAmericans with Disabilities Act, autism spectrum disorder, behaviors, coronavirus, COVID-19, educational advocacy, IDEA Act, IEP, IEPs, Individual Education Plans, Individuals with Disabilities Education Act, rare disease, TS Alliance, TSC, tsc-associated neuropsychiatric disorders, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complex, volunteertsc-now

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In episode 16 of TSC Now, host Dan Klein talks to two of the TS Alliance’s Education Parent Mentors to better understand how parents should approach making the decision on sending their kids back to school during the ongoing COVID-19 pandemic and what rights they have to advocate for the services their kids need. This episode is a follow-up to the webinar “COVID-19 and Back to School” led by our education parent mentors earlier this month.

First, Dan talks with Shannon Grandia (01:21), a mother to three kids with TSC and a spouse to an adult with TSC, who volunteers as an Education Parent Mentor, Adult Regional Coordinator and Dependent Adult Transition Resource Coordinator. In addition to her role as a volunteer, Shannon is also a first-grade teacher in California. They discuss the challenges parents and teachers face in California starting the school year virtually, the incredible workload teachers are taking on to provide resources to kids while they are at home to help address regression from the end of the last school year, and how parents and teachers can develop trust through open communication.

Then Dan talks to Shelly Meitzler (26:45), TS Alliance Regional Program Manager East and an Education Parent Mentor in Pennsylvania. They discuss what decisions she made for her family and what was involved in those decisions, how Individualized Education Programs (IEPs) will look different during the pandemic, and the importance of establishing a paper trail when advocating for your child.

If you are dealing with educational issues and need support please reach out to Dena Hook, Vice President of Support Services at dhook@tsalliance.org so that she can connect you to one of our trained and dedicated education parent mentors.

Thank you to everyone who came out for the Step Forward to Cure TSC National Virtual Walk Run Ride and to the generous sponsors who made the event possible:

You can re-watch all the videos from the weekend and support the Walk-Run-Ride by going to stepforwardtocuretsc.org.

Resources and Links
COVID-19 and Back to School Webinar Recording: https://youtu.be/jp7cJF4boYY
TS Alliance web page on school issues: https://www.tsalliance.org/individuals-families/school-issues/
Local resources to help you connect with local Education Parent Mentors: https://www.tsalliance.org/individuals-families/find-local-resources/

Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School

August 16, 2019EpisodesADA, Americans with Disabilities Act, autism, educational advocacy, epilepsy, IDEA Act, IEP, IEPs, Individual Education Plans, Individuals with Disabilities Education Act, special education, TS Alliance, TSC, tuberous sclerosis, Tuberous Sclerosis Alliance, tuberous sclerosis complex, volunteertsc-now

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In the fourth episode of TSC Now, host Dan Klein talks to Lilian Ansari, MS, Special Needs Advocate, Co-Chair of the TS Alliance of Northern California and Education Parent Mentor. They discuss why she volunteered as an Education Parent Mentor, what types of challenges kids with TSC face in the classroom, and what resources and benefits are available to families under the Individuals with Disabilities Education Act. She also shares what advice she gives to parents as they are preparing for an Individualized Education Program (IEP) meeting, including to record the meeting, take time to review the plan and get everything agreed upon in writing. Finally, she encourages others to volunteer as Education Parent Mentors and provide support in their communities.

If your child is having school issues please call Dena Hook, Vice President of Support Services, at (800) 225-6872 or email her at dhook@tsalliance.org. You may fax documents, such as IEP reports or other correspondence, to Dena at (888) 330-1853.

To learn more about school issues visit: https://www.tsalliance.org/individuals-families/school-issues/

To learn more about the Education Parent Mentor Program and to apply visit: https://www.tsalliance.org/engage/volunteer-opportunities/educator-parent-mentor/