Wayne/Holmes County, Ohio: Addressing special needs
Kathy Troyer, BSN
Martha Horst, MSN
Broader Holmes
county settlement
Estimated Amish
population: 32,000
(246 districts)
Swartzentruber
Amish population: ??
4-6,000
Unique funding strategy for first year of operation:
--Opened for fulltime service January 2013
--All funding for 2013-2014 from Amish church, private donors, or parent organizations
--For 2014-15, no fundraising events have occurred thus far
*community is “auctioned out”
*1/2014: Bishop advisory committee recommended yearly appeal letter to Amish church
*Spring 2014:
*NLC sent bishops in each individual district a letter
*Announcements made in each church district. Donation based on personal assets
requested
*Positive response, and will expect to follow similar process each year
--Board reviewing further funding options/strategic planning for growth/new projects
--Plans to recruit executive director for fulltime help with funding, English outreach, mission
formation, etc.
Barriers to good medical care:
Cultural understanding
Finances/cost of care
Transportation
Trust in the medical establishment
Cystic Fibrosis: Known Treatment, Poor Outcomes
Model for Collaboration
*National CF Foundation reviews and funds all “CF Centers” in the US
*All CF families are asked to participate in national online registry
◦ Data re: outcomes are monitored, used to develop new care recommendations
*Clinical Care Standards are developed from evidence based medicine
◦ Quarterly visits to established “CF Center” are known to improve outcomes, life expectancy
◦ Newborn screening results in early identification of affected children
◦ Inter-disciplinary approached is emphasized
◦ (ie, dietician, genetic counsellor, respiratory therapist)
In 2012, A 2 year old
with CF is admitted to
the PICU for
respiratory failure and
severe malnutrition.
She is reported to
Children’s Services on
discharge.
Growth Chart from the office listed as her primary
care provider:
Same child:
Growth chart
from NLC
(Age 2 years +)
Cystic Fibrosis: We know how to treat it, why are
outcomes so poor?
Barriers:
* Transportation limitations
* Cost of care
* Communication between providers/families
* Community’s understanding of prevention
Advocacy Work:
*Proposal to Akron Childrens CF Center
-allow patients to come to New Leaf for 2 out of 4 quarterly
visits
-visits with Dr. OKW count as visits with a CF provider
Creative Thinking:
* Patient assistance programs
-digestive enzymes
-nutritional supplements
-inhaled antibiotics and aerosols
* Loaner nebulizer/generator
*Pulmonary toilet/VEST recycling
Transportation: Low cost alternatives
Volunteer Driver program
Coordinated appointments at NLC
Several families from same area – together hire a van
Appointment same day as the bus route
Appointment same da
Future
Program
Direction
*Spirometry testing for CF
*Research re: state of CF in the
Amish before and after the program
*Collaboration via EMR
*Telemedicine for ancillary services
*Local education/family days