About a year ago, our department hosted an online screening of the film None of Us Want to Stand Still about better health care for adults with developmental disabilities. After we viewed the film, we had a group discussion, and many of the individuals present reflected, “We need to do something about this issue– here in our region.” So, a committee formed. Under the auspices of Catholic Charities, the committee has been meeting steadily since last Fall, and the plan that emerged was to have a COMMUNITY CONVERSATION with health care providers, parents, self-advocates, educators, direct service providers, etc. (all-inclusive) in which we could discuss what is available in health care (and other related resources) and how to coordinate services in a more unified manner. The committee has included Rosina Hendrickson, Sister Charlotte White, Lisa Wagner-Carollo, Patty Origer, Laura Gaffney MD, and Dr. Moya Peterson.

This month’s column includes interviews with Laura Gaffney MD and Dr. Moya Peterson.

They reflect on their work and the importance of the November 6th gathering. 

– Lisa Wagner-Carollo, Deaf and Disability Ministries Coordinator

 

 

Laura Gaffney, MD

LISA: Can you tell us about the SPAN program?

LAURA: SPAN is an acronym for Special Pediatric to Adult Need program. I started this program to become a primary care home for a diverse group of special needs. I see teens and adults with genetic disorders, autism, and cerebral palsy. There are fewer than ten clinics in the US that are medical homes for this group. My clinic is the only clinic that will also see the family/caregiver, giving comprehensive care to the unit.

LISA: Why is the November 6th event important and why should concerned individuals attend?

LAURA: Teens and adults with special needs are not given enough support. Institutions that serve children get a lot of donations, but not adults. There are so many organizations doing wonderful things in our community, but we are not connected. It is difficult to determine what is needed in the community if we don’t even know what supports are already present and we don’t know how to support them.

To schedule an appointment with Dr. Gaffney, call 913-632-SPAN (7726) or call 913-632-2900 and specify your interest in SPAN when speaking with the scheduler.

Dr. Moya Peterson

LISA: Can you tell us about the KU MED Adults with Down Syndrome Specialty Clinic?

MOYA: The adults with Down syndrome specialty clinic was established in 2009. We care for adults with Down syndrome and their unique health care needs. There are few clinics in the country for adults and, none, actually, other than KU, in the Midwest. As part of KU, we have access to all the specialties offered to all the patients of a tertiary care center. As part of the Department of Family Medicine and Community Health, we also have access to the best family care. We try to see the adult with DS as part of a family and a community. We also have a dietician on the staff of this clinic that sees our patients because so many have dietary issues and weight issues. We prefer to see anyone 13 years and up that need to leave their pediatric providers or decide it is time to change to an adult care provider. To make an appointment call 913-588-1915 or 913-588-1908 and leave a message for me (Moya).

LISA: Why is the November 6th event important and why should concerned individuals attend?

MOYA: We each have a specialty area: some are in medicine, some are in community living, some are in community resources, and some are in finances. However, few of us know about all the parts. This gathering is a beginning to make sure that we all know about all of the parts. Often families only come to the medical provider with a medical question, but they also need community resources for day services, social activities, or financial advisement. Hopefully, November 6th will make each of us aware of the resources or the person that can answer their questions. I think there are a lot of resources that I do not access to assist my families because I simply don’t know they are out there.

For more information on the Deaf and Disabilities Ministry, email ddm@ccharities.com or call them at 816.659.8262
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