<<First Name>>, Welcome to the NCC LIFT Newsletter!

The U.S. healthcare delivery system is a complex network of interactions between the patient and a host of entities including providers, hospitals, and insurers. Individuals and providers often find the system difficult to navigate especially when discussing rare genetic conditions. The National Coordinating Center for the Regional Genetics Networks (NCC) aims to bring clarity to changes in the healthcare delivery system by offering this quarterly newsletter. 

The NCC LIFT Newsletter will track legislative, insurance, and financing issues that affect the genetic service delivery system, as well as provide information about other organizations who are working in healthcare access areas relevant to genetic stakeholders.

In this inaugural issue of the NCC LIFT Newsletter, you will find information about NCC's work to address health care access and financing issues, key organizations to follow, and national organizations that develop helpful resources. We encourage you to actively engage with us in tracking legislative, insurance, and financing issues by visiting and submitting questions you have about the healthcare system. As always, NCC is available at

Table of Contents

Spotlight Organizations*

National Center for Health Insurance and Financing for Children and Youth with Special Health Care Needs (Catalyst Center)

On June 26, 2018, the Center for Innovation in Social Work & Health at Boston University School of Social Work was awarded, for the fourth time, to the Catalyst Center team to improve state systems of care for children and youth with special health care needs. The agreement is part of the Advancing Systems of Services for Childen and Youth with Special Health Care Needs initiative whose focus includes:
  • access to the patient/family-centered medical home;
  • transition into adult health care systems; and
  • adoption of health care financing models that improve care and outcomes with achieving cost savings.
The Catalyst Center will focus on the third pillar of the initiative by "collaborat[ing] with a wide range of stakeholders to influence access to health insurance and advance the systems of services for" children and youth with special health care needs. Find out more about the new funding cycle here and listed below are a few resources available now:
  • Title V and Medicaid/CHIP Tutorial and Interactive Worksheets (here)
    provides an important educational resource on these important funding
  • State Data Chartbook highlights a select list of health indicators from the 50 states, Washington, DC, and Puerto Rico. Explore your state's data here.

National Academy of State Health Policy (NASHP)

  • Membership: State health policy makers including Medicaid, public health agencies, and other state health agencies
  • Resources include their website, newsletter, annual conference, specific analyses and information dissemination, as well as:
    • Healthy Child Development State Resource Center summarizes policies, tools, and resources to support states in their efforts to foster healthy development among young children by improving developmental screening, referral and care coordination processes. See State Medicaid policies around developmental screening reimbursement and screening tools here.
    • Resource page on children with special health care needs includes maps on states Medicaid Managed Care programs and EPSDT resources by state here.

NCC Resource

The purpose of State Medicaid Genetics Policies database is to allow state Medicaid agencies to share information about how services may be covered and for providers and families to have a sense of services their state Medicaid agencies may cover. Information collected is from written policies and does not include case-by-case coverage determination. 

Key Organizations to Follow

American Academy of Pediatrics

The mission of the American Academy of Pediatrics is to attain optimal physical, mental, and social health and well-being for all infants, children, adolescents and young adults. To accomplish this, AAP shall support the professional needs of its members. Learn More
The mission of the American Society of Human Genetics is to advance human genetics in science, health, and society through excellence in research, education, and advocacy. Learn More

American Society of Human Genetics


Association of Maternal and Child Health Programs

The Association of Maternal & Child Health Programs is a national resource, partner, and advocate for state public health leaders and others working to improve the health of women, children, youth and families, including those with special health care needs. Learn More
Since 1995, the Center for Health Care Strategies (CHCS) has partnered with nearly every state in the country to promote innovations in publicly financed health care, especially for individuals with complex, high-cost needs.​ Learn More

Center for Health Care Strategies


Genetic Alliance

Genetic Alliance engages individuals, families, and communities to transform health​ Learn More
Kaiser Family Foundation is a non-profit organization focusing on national health issues that develops and runs its own policy analysis, journalism, and communication programs. Learn More

Kaiser Family Foundation


National Society of Genetic Counselors

The National Society of Genetic Counselors advances the various roles of genetic counselors in health care by fostering education, research, and public policy to ensure the availability of quality genetic services. Learn More

Want More Information?

Is there a resource, tool, or policy you would like to learn more about? Please fill out our suggestion box with information you would like to see in future issues of LIFT.
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* Links provided in this newsletter are for informational purposes only and are not the full compendium of resources available by these organizations. Providing these links does not necessarily indicate support or endorsement of these sites.
Copyright © 2018 National Coordinating Center for the Regional Genetics Networks, All rights reserved.

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This newsletter is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of a Cooperative Agreement (#UH9MC30770-01-00) to the American College of Medical Genetics and Genomics totaling $2,400,000 (6/2017-5/2020 for $800,000 per award year) with 0 percent financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more information, please visit

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