NEGC Reapplication notes

Jbm

January 9, 2012

Goals and/or work groups:

  1. Education and Workforce Development Core. (Addresses base goal and additional goal 3.)
  2. Add LEND programs in NE for “pre-service education” thus including disciplines such as nutrition, nursing, OT, education, SW, etc. (CT and RI do not have LEND programs.)
  3. Burke, McGrath, Moeschler
  4. Add: David Helm, Betsy Humphreys, Lu Zeph, Steve Contampassis, Cass Braden (NE LEND Directors or Training Directors.
  5. Fund stipend for one fellow/year to participate in LEND training program with targets as per guidance (Title V, home visitors) and/or genetic counselor trainee.
  6. Needs assessment of workforce needed to care for those children with special health care needs identified by NBS programs (McGrath).
  7. Link GEMS with LEND education trainees.
  8. Genetic literacy, website, social media, etc.
  9. Access Core (Base goal and goal 7)
  10. Financing core—insurance for services and medical foods, genetic testing, and comprehensive care services.
  11. Underserved population core—SCD centers; FQHCs(?); cultural competence?—Tricia Kavanaugh, Bill Kubiceck, SCD leaders.
  12. Rural population core—telehealth, Rosemarie Smith.
  13. Clinical Services Quality improvement core—(Base goal 3 and possibly “scaling up”)
  14. Metabolic centers and DD continue; “scaling-up” activity.
  15. Collaborate with SCD at Boston Med (Kavanaugh).
  16. Learning Collaboratives.
  17. New models of care with MH-Specialty centers.
  18. Genetic assessment tools (heartland) with states with Genetics plans and staff (CT).
  19. Systems of care core :“Treat in the context of the medical home”.
  20. Base Goal 1 and additional Goal 4.
  21. Carl and Susan re: transition models of care, youth leadership development, co-management tools.
  22. Linked to Finance Core.
  23. Financing Core.
  24. Base goal 1 and additional Goal 7.
  25. McGrath, Catalyst Center, Kay Johnson, Michelle Winchester, Self-Advocacy Committee chair.
  26. Long Term follow-up Core.
  27. Additional Goal 8; “scaling up”?
  28. Emergency Preparedness core.
  29. Additional Goal 9.
  30. Innovative projects grants.
  31. Linked to goals to include other innovations.

Scaling up: programs or modules developed from last 5 years.

New activities: generate new ideas to test, measure, refine, and disseminate.

What programs are ready or need to be “scaled up”?

  1. GEMS
  2. QI—d.d. protocols
  3. Metabolic Centers QI—protocols for PKU, MCADD.

Other “dangling” activities:

  1. Korson’s metabolic care “coaching”.
  2. Hemophilia Centers.
  3. Genetic disorders centers of excellence or care excellence centers.
  4. As per ACA and ACOs.
  5. National conversation for care of those with rare (and expensive) conditions.