Archived Webinars 

All of the NCC Webinars can be found on the NCC You Tube channel. Below is a summary of the NCC sponsored webinars. Stay tuned for more exciting webinars to come! 

A Dialogue: Addressing and Paying for Genetic Services Webinar 

On June 15th, 2015 A Dialogue: Addressing and Paying for Genetic Services was held in Washington, DC.  The objectives of the meeting included: identifying the genetic/genomic services needed and the approaches and barriers to providing those services; to initiate a dialogue among genetic providers, experts and consumers and representatives of delivery systems, purchasers and payers of services designed to support the development of appropriate delivery system options and payment for genetic services; and to develop a plan for the NCC/RCs to collaborated with integrated delivery systems and payers to implement solutions that will improve access and availability of genetic services.  In order to address these objectives the day was split into a mix of presentations and discussions with leading experts in the field of genetics.  To view the webinar, please click here.  Be sure to visit the meeting news page as well to view the meeting materials and presentations given throughout the day.

ACA Implementation Webinar Series 

HRSA Genetic Service Collaboratives' Webinar: Genetic Services and the Affordable Care Act
Meg Comeau, MHA and Director of the Catalyst Center at the Boston University School of Public Health, joins the NCC for a webinar to discuss the Affordable Care Act (ACA) and the benefits and drawbacks that the law may have on the services provided to individuals with genetic conditions. The Catalyst Center is funded by the Division of Services for Children with Special Health Needs at the Maternal and Child Health Bureau. The Catalyst Center works to increase access to care for children with special health care needs. In this webinar, Ms. Comeau notes the crucial intersection between insurance coverage and public health. When individuals have access to better coverage, she explains, then these individuals have better health outcomes. She states at the Catalyst Center, they believe the ACA is “a step in the right direction,” and describes three areas the law helps to improve: insurance reforms, new or expanded pathways to coverage, and cost and quality provisions.
Overall, Ms. Comeau presents many reforms in the ACA that have given increased attention to public health, primary care, and prevention, all of which can benefit individuals requiring genetic services. She also mentions, however, factors such as grandfathered and self-funded plans being exempt from provisions and essential health benefits (EHB) being built on existing coverage may still lead to issues with coverage. Although the ACA is a step in the right direction, there is still more ground to cover in the expansion of genetic services and care for individuals with genetic conditions. 
Watch the archived webinar here

HRSA Genetic Service Collaboratives' Webinar: Payment Reform and the Affordable Care Act

In the “HRSA Genetic Service Collaboratives’ Webinar: Payment Reform and the Affordable Care Act,” Ms. Comeau discusses how the reforms in the ACA will affect the health care financing of services for individuals with genetic conditions, specifically children.  The Catalyst Center broadly defines children with special health care needs (CSHCN), including children with genetic conditions. In the United States, eleven million children are considered CSHCN, which is fifteen percent of all children. As Ms. Comeau points out in this webinar, fifteen percent is a significant portion of the pediatric population. She cites this as evidence how policy should focus on payment reform for not only adults, but also the CSHCN population. 

Ms. Comeau focuses on the notion payment reform should motivate better quality and more effective care for CSHCN, including those with genetics conditions. She encourages a move from the fee-for-service standard payment model, which pays based on how much service is provided, to focus instead on how well services are provided. 
Watch the archived webinar here

Advocacy ATLAS Webinar Series


Empowering Individuals as Advocates Webinar
"Empowering Individuals as Advocates" is the first in a series of three webinars presented by Genetic Alliance that discuss and explore the Accessible Tools for Leadership and Advocacy Success (ATLAS).  ATLAS was developed by Genetic Alliance, Parent to Parent USA and Family Voices to provide tools and resources for parent and self-advocates.  Empowering Individuals as Advocates webinar explores how people can use the different tools provided by ATLAS through individual narrative.

Three individuals discuss how they used different tools presented by ATLAS to help advocate for their child.   The different tools highlighted are Advocacy and Leadership Skills, Education Services and Supports, and Legislation and Political Action.  Each individual details how they used these various tools to give their children what they needed.  A key feature highlighted by each speaker is how important advocacy is and that everyone must work together cohesively in order to give the individual the best health care and quality of life possible.  Watch Empowering Individuals as Advocates, to explore how the different tools were utilized by individuals.

Resources for Advocacy Through the Transition Years and Beyond
Resources for Advocacy Through the Transition Years and Beyond is the second in a series of three webinars presented by Genetic Alliance that discusses and explores the Accessible Tools for Leadership and Advocacy Success (ATLAS).  ATLAS was developed by Genetic Alliance, Parent to Parent USA and Family Voices to provide tools and resources for parent and self-advocates.  Resources for Advocacy Through the Transition Years and Beyond focuses on resources and different types of care that are needed for the teenage years and into adulthood

The webinar combines tools that are available on ATLAS with personal stories on how those tools and resources can be implemented.  Parent and self-advocates share their stories about resources and tools used in order to effectively transition from childhood to adulthood.  By exploring the resources through an individual’s story, the webinar demonstrates the power of ATLAS and the importance of advocating has on a person’s life.  Watch Resources for Advocacy Through the Transition Years and Beyond.

Improving Services for Individuals with Genetic Conditions

 

National Genetics Education and Consumer Network (NGECN) , a partnership between Genetic Alliance and NCC, hosted a webinar on the upcoming consumer needs assessment.  As a part of the 2015-2017 funding cycle from the Health Resources and Services Administration (HRSA), NGECN and NCC has been tasked with proposing a new regional genetic services framework(s).  The consumer needs assessment will help inform the development of this new model(s).  

The webinar walks participants through the proposed consumer needs assessment.  Webinar participants were able to provide their feedback immediately and after the presentation.  To view the archived webinar, please click here.

National Organization for Rare Disorders (NORD) Rare Action Network


Paul Melmeyer, Assistant Director of Public Policy at NORD, presented NORD's Rare Action Network to the NCC Healthcare Access and Financing (formerly NCC ACA Implementation) Workgroup.  The Rare Action Network objective is to "mobilize patients around the country to advocate for policies that support the needs of patients with rare diseases".  In order to promote patient action, NORD will be working within the state's to advocate for the needs of the rare disease population.  Through a regional framework, NORD will be able to lend support to the state level advocates.  Watch the webinar presentation here!


Watch all of the NCC Webinars on the
NCC YouTube Channel