Topeka Indiana LaGrange/ Elkhart Counties Indiana Plain ...ddcclinic.org/docs/cme-presentations/Jared_Beasley_Angela_Scheid... · Topeka Indiana . LaGrange/ Elkhart Counties . Indiana

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

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

Barriers to Care

Travel

Access to motorized travel

Location of specialty providers

Cost

High cost of Genetic care and testing

Faith based objection to conventional insurance

Education

Need for community education

Need for provider resources and education

Presenter

Presentation Notes

$1.00 per mile Topeka to Indianapolis – 165 Miles Car that gets 30 miles per gallon $38

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

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

Small but important pieces

Bottles

Temporary cell phones

Education for families and local healthcare providers

Community Contact Couples

CHC Genetics Survey

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.”

Presenter

Presentation Notes

The American Academy of Pediatrics (AAP) describes the medical home as a model of delivering care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective. The AAP has begun many initiatives to promote the adoption and spread of the medical home.

http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&uact=8&docid=LYw_fUTEcrQlgM&tbnid=xDUHRibQF93zfM:&ved=0CAUQjRw&url=http://www.theguardian.com/tv-and-radio/2012/aug/01/amish-secret-life-the-briefs&ei=CFg9U4aHAZbKsQTGsICQDA&psig=AFQjCNEFN20VoC8RELy44hd1YUAJ_EHh2A&ust=1396571654834291

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

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

Healthcare Sharing Ministry

Federally designated exception to ACA

Free will plan already existing

Distributes healthcare costs throughout community

Negotiates pricing for plain community members

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

Presenter

Presentation Notes

The Community Health Clinic is based in Topeka, IN as a central location for the Amish community. We opened almost a year ago in Sept. Since then we started an outreach clinic in Fort Wayne. We have become affiliated with 5 hospitals in the surrounding areas. And hope to have an outreach clinic in Adams County.

Patient Population

~ 150 active patients

Indiana, Illinois, Kentucky, Michigan, & Missouri

70% Amish/Mennonite, 30% Non-Amish

80% Pediatric, 20% Adults

Religious Affiliation

Amish/Mennonite Non-Amish

Patient Age

Pediatric Adult

Presenter

Presentation Notes

We are excited to report that in these past 11 months we have ~150 active patients with a total nearing 200 patients we have seen or will be seeing soon in the clinic. Our patient population spans 5 states including Indiana, Illinois, Kentucky, Michigan, and Missouri 70% Amish/Mennonite and 30% Non-Amish. With the bulk of the Amish/Mennonite category being Amish (100:10). Non-Amish patients include Caucasian, Hispanic, Burmese, African (family from Chad). We primarily seeing Pediatric patients 80%:20% Adults

Known Amish/Mennonite Disorders Michigan: Crigler Najjar

Missouri: Cystic Fibrosis

Illinois: Cobolomin C Defect & Dopa-Responsive Dystonia

Galactosemia, GM3 Synthase, Hypomyelinating Luekodystrophy, VLCADD

Brittle Hair, CAH, CMT, CF, Dystonia 6, Galactosemia, Hemophilia & Other Bleeding Disorders, Hypertrophic Cardiomyopathy, MCAD, MMA, MSUD, PKU, Polycystic Kidney Disease, SCID

Dystonia, SNIP1

Non-Ketotic Hyperglycinemia, Spinal Muscle Atrophy

Presenter

Presentation Notes

SNIP1 – Symptomatic epilepsy and skull dysplasia CAH – Congenital Adrenal Hypoplasia CF – Cystic Fibrosis CMT – Charcot Marie Tooth MMA – Methylmalonic Acidemia MSUD – Maple Syrup Urine Disease PKU – Phenylketonuria SCID – Severe Combined Immunodeficiency

IEMs diagnosed by NBS

Duarte Galactosemia VLCADD, MCADD PKU

Biotinidase Deficiency IBDH Deficiency 2MBCD Deficiency MMA 3MCC Deficiency

Presenter

Presentation Notes

Not only do we have Amish/Mennonite patients but we also do NBS follow-up for 11 counties in NorthEastern Indiana. This helps us to serve the Amish community along with the rural community in Northern Indiana. Since inception of the NBS follow-up at the clinic we have done confirmatory testing and diagnosed patients with Duarte Galactosemia, Very Long Chain Acyl Co-A Dehydrogenase Deficiency, Medium Chain Acyl Co-A Dehydrogenase Deficiency, PKU, Biotinidase Deficiency, Isobutyryl-CoA Dehydrogenase Deficiency, 2-Methylbutryl Dehydrogenase Deficiency, Methylmalonic Acidemia, & 3-methylcrotonyl-CoA carboxylase Deficiency. The later grouping we have seen only in non-Amish patients.

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

Presenter

Presentation Notes

We have heard that there is undiagnosed Propionic Acidemia & Sudden Death in the Nappanee area. Those dying have 1st or 2nd degree relatives that are known to be affected with PA Lack of Education – misunderstanding of what genetic disorders are, people believing problems d/t Supplement Deficiencies, lack of knowing what is normal development vs abnormal, lack of primary care follow-up Counties with high infant mortality rates have the highest incompliance & refuse follow-up Expanding NBS to include Amish specific mutations will take more time than initially assumed

Questions?

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

Documents

Topeka Indiana LaGrange/ Elkhart Counties Indiana Plain ...ddcclinic.org/docs/cme-presentations/Jared_Beasley_Angela_Scheid... · Topeka Indiana . LaGrange/ Elkhart Counties . Indiana