Topeka Indiana LaGrange/ Elkhart Counties Indiana Plain Church Population over 46,000

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1 Topeka Indiana LaGrange/ Elkhart Counties Indiana Plain Church Population over 46,000

2 Need Recognition Recognition of need local community members and Indiana Hemophilia and Thrombosis Center Initial Survey of Elkhart and LaGrange Counties Increased incidence of Genetic conditions Specifically IEM Increased Mortality within that group Especially in the first 3 years of life

3 Travel Cost Access to motorized travel Location of specialty providers High cost of Genetic care and testing Faith based objection to conventional insurance Education Need for community education Barriers to Care Need for provider resources and education

4 Funding Model 1/3 Grants and Private Donors State Grants (NBS, MCHS, Title V) IHTC 1/3 Local Fund Raising Dutch Dinner Benefit Auction 1/3 - Patient Revenue Significantly reduced rates 50% self pay discount PCGM administrative fees

5 Objectives of the Das Kind Program Provide immediate and culturally appropriate communication to ensure prompt completion of confirmatory testing and initiation of preventative interventions Offer community-based, expert genetics care to all individuals with a diagnosed or suspected IEM or other genetic disease Provide education to the patients/families, community members, and healthcare providers regarding genetic disease and protocols to ensure optimal outcomes, and Provide education to local health care providers, including midwives, about IEMs and the importance of correct NBS techniques and follow-up care

6 Small but important pieces Bottles Temporary cell phones Education for families and local healthcare providers Community Contact Couples CHC Genetics Survey

7 The American Academy of Pediatrics describes the medical home as..a model of delivering care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective.

8 Having a medical home means: Care is in your community Cultural background is recognized, valued, and respected Staff are sensitive to stereotypes and cultural assumptions Multi-language materials and services are available

9 How would this look for the Amish? A clinic within a buggy s ride of the majority of the community Access to staff who speak Dutch Culturally acceptable genetic counseling: Providing information on risk and inheritance, acknowledging the unacceptability of pregnancy termination Respect for and privacy regarding a family s decision regarding acceptance of insurance

10 Healthcare Sharing Ministry Federally designated exception to ACA Free will plan already existing Distributes healthcare costs throughout community Negotiates pricing for plain community members

11 Service Locations Community Health Clinic Topeka Outreach Clinic Fort Wayne Hospital Affiliations Parkview Regional Medical, Parkview Lagrange, IU Goshen, South Bend Memorial Future Outreach Clinics Adams County

12 Patient Population ~ 150 active patients Indiana, Illinois, Kentucky, Michigan, & Missouri 70% Amish/Mennonite, 30% Non-Amish 80% Pediatric, 20% Adults Patient Age Religious Affiliation Amish/Mennonite Non-Amish Pediatric Adult

13 Known Amish/Mennonite Disorders Illinois: Cobolomin C Defect & Dopa- Responsive Dystonia Michigan: Crigler Najjar Dystonia, SNIP1 Brittle Hair, CAH, CMT, CF, Dystonia 6, Galactosemia, Hemophilia & Other Bleeding Disorders, Hypertrophic Cardiomyopathy, MCAD, MMA, MSUD, PKU, Polycystic Kidney Disease, SCID Non-Ketotic Hyperglycinemia, Spinal Muscle Atrophy Missouri: Cystic Fibrosis Galactosemia, GM3 Synthase, Hypomyelinating Luekodystrophy, VLCADD

14 Duarte Galactosemia VLCADD, MCADD PKU IEMs diagnosed by NBS Biotinidase Deficiency IBDH Deficiency 2MBCD Deficiency MMA 3MCC Deficiency

15 Concerns Undiagnosed Propionic Acidemia & Sudden Death in Nappanee Lack of Education Counties with high infant mortality rates have the highest incompliance & refuse follow-up Expanding NBS to include Amish specific mutations will take time

16 Questions? Thank you! Angi Scheid, CPNP & Jared Beasley, Clinic Operations Director