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Clinic for Special Children

Summary 
  • Need: To provide healthcare for the genetically vulnerable children of the rural, uninsured Amish and Mennonite communities in southern Pennsylvania.
  • Intervention: A clinic that serves as a comprehensive care medical home for children (primarily from the Amish and Mennonite communities) with rare, inherited disorders.
  • Results: In 2017, over 1,100 active patients with more than 225 unique genetic mutations were treated at the Clinic for Special Children.

Description

Clinic for Special Children logoThe Clinic for Special Children (CSC) is a nonprofit comprehensive care medical home for children with rare, inherited disorders. Situated in Lancaster County, Pennsylvania, this rural medical clinic was established in 1989 with the mission of providing healthcare to genetically vulnerable children, primarily from the rural, uninsured Amish and Mennonite communities in southern Pennsylvania.

The Amish and Mennonite populations, often called "Plain people," are descendants of Swiss Anabaptists who settled the country in the mid-1700s. Since individuals generally do not join Old Order groups, all current community members are the descendants of a small number of founders. This puts individuals at a higher risk for certain genetic disorders, most of which are rare in the general population. Geneticists call this the "founder effect."

Although about 90% of children served by CSC are from the Plain communities, CSC's application of genetics in primary healthcare has broad, positive implications for the general population. The clinic staff treats patients from many states and countries. These patients have more than 225 unique mutations, with staff discovering an additional 10 to 30 mutations each year.

The clinic's unique model includes an onsite CLIA-certified (Clinical Laboratory Improvement Amendments) clinical laboratory. The laboratory focuses on providing biochemical and genetic assays (tests), which are the most inaccessible to CSC patients due to cost, need, and turnaround time. CSC also conducts laboratory and clinical research and publishes results in peer-reviewed journals.

While CSC only has one clinic location, it serves patients from around the world in a consulting role, working with those patients' local physicians. Since the opening of CSC, four clinics have been modeled after it: the DDC Clinic-Center for Special Needs Children in Middlefield, Ohio; the New Leaf Center-Clinic for Special Children in rural Mt. Eaton, Ohio; the Center for Special Children in rural La Farge, Wisconsin; and the Community Health Clinic in rural Topeka, Indiana. While serving similar populations, the other clinics differ in their funding structures.

Clinic for Special Children photo

Initial funding for CSC came when the Wall Street Journal published a piece in the fall of 1989 about the founders: Dr. D. Holmes Morton and his wife, Caroline. It explained their efforts to start the clinic. After the article was published, $450,000 of private donations came pouring in, including an important piece of diagnostic equipment from Hewlett-Packard.

Because Amish and Mennonite people do not carry health insurance or use government assistance for healthcare, CSC does not receive any funding from third-party payers. Today, funding for CSC comes primarily from fundraising, in particular five annual benefit auctions put on by members of the Amish and Mennonite communities. These auctions raise hundreds of thousands of dollars each year for the clinic.

2017 clinic revenue:

  • 49% from fundraising (benefit auctions, private donations, grants)
  • 30% collaborative funding
  • 14% from clinical and lab fees
  • 4% from endowment draw
  • 3% miscellaneous income and grants

For additional reading about the Clinic for Special Children:
Pennsylvania Clinic Treats Genetic Disorders in Amish and Mennonite People
25 Years of Personalized, Genomic Medicine in Lancaster County

Services offered

  • Diagnose complex genetic conditions in children through cost-effective methods
  • Provide population-specific testing, using an onsite CLIA-certified, Pennsylvania state-licensed clinical biochemical and genetics laboratory
  • Provide pre-symptomatic diagnosis and disease prevention
  • Develop and provide medical and dietary interventions for hereditary conditions in children
  • Seek opportunities for education and collaboration that promote the well-being of the genetically disadvantaged
  • Train young scientists and clinicians who will care for the genetically disadvantaged
  • Inform the practice of genomic medicine in other settings
  • Provide treatment based on scientifically sound data
  • Publish research results in peer-reviewed papers
  • 18 specialist services including cardiology, endocrinology, and orthopedics
  • Save the Plain communities tens of millions of dollars each year by increasing diagnostics efficiencies, preventing severe disabilities in children, and reducing hospitalization rates

Results

Results from 2017:

  • 264 diseases managed
  • 1,051 patients from 40 states and 17 countries
  • 1,606 patient visits
  • 17 staff members
  • 3,914 biochemical and genetic tests
  • $3 million budget
  • $40 million estimated savings to patients' families from the Plain communities each year
  • 40% of patients have treatable or curable conditions, 40% have partially treatable conditions, and the remaining 20% have terminal conditions or leave without a diagnosis

For more information:

Crowgey, E.L., Washburn, M.C., Kolb, E.A., & Puffenberger, E.G. (2019). Development of a Novel Next-Generation Sequencing Assay for Carrier Screening in Old Order Amish and Mennonite Populations of Pennsylvania. The Journal of Molecular Diagnostics, 21(4), 687-694. Article Abstract

Strauss, K.A., Gonzaga-Jauregui, C., Brigatti, K.W., Williams, K.B., King, A.K., Van Hout, C., ... & Puffenberger, E.G. (2018). Genomic Diagnostics within a Medically Underserved Population: Efficacy and Implications. Genetics in Medicine, 20(1), 31-41. Article Abstract

Chowdhury, D., Williams, K.B., Chidekel, A., Pizarro, C., Preedy, C., Young, M., ... & Strauss, K.A. (2017). Management of Congenital Heart Disease Associated with Ellis-van Creveld Short-rib Thoracic Dysplasia. The Journal of Pediatrics, 191, 145-151. Article Abstract

Barriers

At the start-up of CSC, the primary barrier was community involvement. It was initially difficult to make the case for such a clinic to exist. Once the clinic was providing services, it was a lot easier to gain community buy-in. Today, community involvement in the clinic is one of its greatest strengths.

A current challenge experienced by CSC is the rapid growth in the population of the Amish and Mennonite communities. With this growth comes the need for additional services from the clinic. However, because CSC is funded primarily through fundraising and not through fees for service, careful planning is required to increase clinical or laboratory capacity.

Another barrier is services for adult patients. Approximately 25% of CSC's current active patients are over the age of 18 but are still being cared for by pediatricians.

Replication

For organizations considering starting up a similar clinic, it is important for the community to be involved and engaged in order for the clinic to be successful.

Flexibility is also important. Although the model is generally transferrable to other communities, it is necessary to be open to ideas and adapt to the needs, wants, and financial resources of the community in which the clinic is to be located.

Contact Information

Adam Heaps, Executive Director
Clinic for Special Children
717.687.9407
aheaps@clinicforspecialchildren.org

Topics
Anabaptists
Children and youth
Medical homes

States served
Delaware, Maryland, New York, Pennsylvania

Date added
June 9, 2015

Date updated or reviewed
July 5, 2019


Please contact the models and innovations contact directly for the most complete and current information about this program. Summaries of models and innovations are provided by RHIhub for your convenience. The programs described are not endorsed by RHIhub or by the Federal Office of Rural Health Policy. Each rural community should consider whether a particular project or approach is a good match for their community’s needs and capacity. While it is sometimes possible to adapt program components to match your resources, keep in mind that changes to the program design may impact results.