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Links

Jackie's presentation can be found here

Jackie on Facebook: What We Need Yesterday

Jaydne's Wednesday Warrior.

‍Synaptic Plasticity - Dr. Richard Huganir, Ph.D.

Crisis in Crisis Care - National Council on Severe Autism

‍Amazon List

Behavior Analyst Certification Board

NCSA National Grassroots Networks

‍These are our introductory comments

Our presentation today is on ‘Severe Behaviors and Advocacy.’

I have the pleasure to introduce today’s speaker, Jackie Kancir.  Jackie is the parent to 18-year-old Jaydne who has Syngap1. Jackie is also the older sibling of an individual with disabilities. In high school she founded an organization to promote integration of disabled students and their neurotypical peers.

Jackie started blogging in 2008. Her background includes IEP advocacy for families of children with disabilities,  Development Director for a 501(c)3 veterans program, advocacy focus on crisis care, committee member on National Council on Severe Autism Policy, and she’s a Scholar of Partners in Policymaking by Tennessee Council on Developmental Disabilities. Jackie is also Editor of ‘What We Need Yesterday’ which can be accessed via Facebook.

A recorded version of this webinar will be available on the SRF website under Webinars on the Family menu.

By the end of this presentation you will have the opportunity to get the answers to your questions.  We’d love to hear from you. Please write your question in the Q&A.

Webinar Overview

Jackie Kancir is the parent of Jadyne, an 18 year-old with SYNGAP1. She starts the webinar by talking about severe behaviors in SYNGAP1, which include self-injury, aggression, elopement, and property destruction. There are very limited options (if any) to treat these behaviors, so Kancir gives tips to prepare. In Kancir’s experience, she has found that creating a crisis plan and using ABA (Applied Behavior Analysis) therapy are the best ways to manage severe behaviors. She provides an Amazon shopping list of helpful home modifications and technologies to prepare for these severe behaviors, and gives recommendations for items and activities to help SYNGAP1 patients with sensory regulation. Next, she shifts to acquiring benefits as a SYNGAP1 parent and the different long-term supportive services (LTSS) available. She closes the webinar by emphasizing ways to advocate for your children. Kancir talks about how it is incredibly important to know your rights; the 14th amendment protects the right to direct the care of your children, Olmstead v. L.C. protects the right to choose the setting, and EPSDT (early and periodic screening, diagnostic, and treatment services) ensures that funding is available to meet the medically necessary services for your child.