Healthcare Access and Financing Workgroup


By: Sue Ginsburg and Leila Jamal

Implementing the Affordable Care Act in the NYMAC Region includes sections on financing and reimbursement reform and service delivery reform.  To access the extensive report, please click here.

The Affordable Care Act; Through the Life Course

Developed by: Western States Genetics Regional Collaborative

The Affordable Care Act: Through the Life Course is a website developed by the Western States Genetics Regional Collaborative that helps individuals answers questions about the ACA. WSGSC begins by giving an overview of the information available depending on personal needs and/or questions. The map provides an overview of the new law by explaining what health insurance exchanges are, health benefits, and different terms and resources referenced throughout the ACA.  In addition, the map provides different topical areas on how the law will affect an individual depending on life stages.  Examining each section, users are able to fully understand how the Affordable Care Act changes the current health care structure and how the new law may impact the user individually. This website also addresses family members who have a child with a genetic condition.  By aggregating information regarding the ACA into relevant categories, the Through the Life Course website makes it easy for users to find information relevant to their life circumstances. Visit the new WSGSC “Through the Life Course” website today

AMCHP: Who Will Be Covered for What in 2014?

In the September 2013, the Association of Maternal and Child Health Programs published "Who Will Be Covered for What in 2014?".  The brief provides an "overview of projected public and private insurance coverage and essential health benefits for Maternal and Child Health Populations under the Affordable Care Act".   Medicaid Expansion eligibility requirements for adults and children, comprehensive information about required health insurance benefits and potential gaps are discussed in the brief.  Please click here to learn more.

Heartland Genetics Services Collaborative ACA Forum

In May 2014, Heartland held an ACA Forum that had two parts: Phase I and Phase II.

Phase I was a presentation from Meg Comeau, the co-principal investigator of the Catalyst Center at the Boston University of Public Health.  The presentation as well as the slides are available. 

Phase II participants met in Kansas City and were presented information by Captain Jose Belardo, JD, MSW; Meredith Weaver, PhD, ScM, CGC; David Deere, MSW, MTH; and Angie Doyle Scar, MPH.

Implementing the Affordable Care Act: Revisiting the ACA's Essential Health Benefits Requirements

Developed by: Commonwealth Fund 

The Commonwealth Fund explored the variability in Essential Health Benefits, required by the ACA, across the country.  To access the brief, please click here.

Information and Recommendations for State Policymakers

Initially developed by: New England Genetics Collaborative Health Care Access and Financing Workgroup

The New England Children with Genetic Disorders & Health Reform- Information and Recommendations for State Policymakers policy brief defines what genetic disorders are and how these children are impacted by insurance gaps and barriers, shows opportunities for improving coverage and benefits under the ACA, identifies potential challenges that may remain, and recommends strategies for state policy makers.  The policy brief includes data from New England families, provides short vignettes and resources for both policymakers and families.  A webinar led by Meg Comeau, MHA explaining the highlights of the brief can be found here.  To download the PDF, please click here.

Due to the success of the NEGC Policy brief, MSGRC adapted the information to their region.  The brief analyzes "how current ACA policies impact families and can be improved to close benefit gaps, cover more children, and improve access and integration of services for children with genetic disorders living in the Mountain States Region." To access the brief, please click here.

National Survey of Providers Treating Patients with Metabolic Disorders Identified by Newborn Screening Demonstrates Challenges Faced by Clinical Care Systems

Authored by: Monica McClain, Robert McGrath, Michelle Stransky, and Judith Benkendorf

NEGC, in collaboration with NCC, developed a survey tool to understand the services available to infants with metabolic disorders, identified through newborn screening, within the first year of life.  To access the article, please click here.

Navigating the Affordable Care Act Fact Sheets for Families

Developed by: The Catalyst Center and National Center for Medical Home Implementation

Information from:

Four plain language fact sheets explain specific provisions of the Affordable Care Act which benefit children and youth with special health care needs. Topics include:

NIH National Human Genome Research Institute Understanding Genetic Testing Webinars

Produced by: NIH National Human Genome Research Institute

The National Human Genome Research Institute partnered with the Blue Cross Blue Shield Association to host 13 webinars about genetic and genomic medicine and testing.  The webinars ranged from understanding the fundamentals of genetics to ethical considerations of genetic testing.  To view information about each presentation and the slides/recordings of each webinar, click here.

Region-Specific Matrices

Produced and Approved by: NCC Healthcare Access and Financing Workgroup Members

The NCC/RC Matrix template developed by the NCC Healthcare Access and Financing Workgroup to identify the variance of healthcare provided throughout the country.

NEGC Matrix
NYMAC Matrix
SERC Matrix
Region 4 Midwest Matrix
Heartland Matrix
MSGRC Matrix
WSGSC Matrix

The Next Generation of Genomic Testing: Billing and Reimbursement in the Genomic Era

Presentations by: Gerald Feldman, Kay Jewell, Joanne Armstrong, Cheryl Hess, and David Flannery

At the 2015 American College of Medical Genetics and Genomics Annual Clinical Genetics Meeting, a plenary session was held that focused on the issues genetics providers face in terms of billing and reimbursement.  To view the slide deck, please click here.  A live recording (fee associated) is offered through the ACMG website.