Raise your hand if you have ever wished that all of the providers who see your child had a streamlined way to communicate?
Raise your hand if you have ever wished that rather than seeing the OT, PT, and SLP in one office, Pediatric GI in another, and child psychologist in yet another, you could "Beam them up" and have them appear in one location?
And, raise your hand if you wish that you had someone on site, at these appointments, that understood from your perspective, what it is like to not only travel the distance to ensure that your child receives the care recommended, but can also help you understand what each of these people working with your child is actually doing, and why it is important?
This my friends is the concept behind the Kinera Foundation Eastern Shore Regional Hub.
Maryland is home to some of the leading institutes, hospitals, research facilities, and programs globally, and yet these amazing resources are still inaccessible to many of the residents in the state. Why is that? We feel that there is no middle man allowing, guiding, and frankly coercing these organizations to work together, in a way that meets their mission, while better serving the greater community.
Maryland is also home to an abundance of State and Federally funded Agencies who directly serve the Developmentally and Intellectually Disabled population, but who here can name them, and explain what their role is, and how it relates to those other Agencies? No hands, you are not alone.
Kinera Foundation knows that these are just a few of the barriers to families accessing care, but perhaps by addressing these barriers together, with multiple stakeholders sitting at the table, we can better determine how to ensure that your family, your child, has access to therapies, treatment, resources, information, support, and funding in a collaborative and coordinated way.
By definition, collaboration is the process of two or more people or organizations working together to realize shared goals. The shared goals in this instance are ensuring that children with special health care needs receive the care they require in the region they reside. It seems simple, and yet, there have been few who have taken the collaboration beyond their specific practice.
There are many obstacles with presenting and implementing a project like the Kinera Foundation Eastern Shore Regional Hub. We are tasked with finding the right organizations and agencies to collaborate with, while ensuring that we are not duplicating or reinventing existing program models. Simultaneously, we need to show these services should be provided collaboratively and under one roof. Then we need to solicit buy in from our collaborators turned partners, to ensure that we are able to provide the services, without diminishing each of the partners respective and individual mission and goals. This all must be done while maintaining the shared vision of better serving children with special health care needs and their families, while not "going in the red" to do so.
The benefits of collaboration far outweigh the challenges. By collaborating, we reduce the cost for service providers to expand their services into new regions. We also introduce those providers to clients they may not previously had access to. Families benefit by having a multitude of providers located together, increasing accessibility, and reducing the cost to the family to receive care per the recommendations of the provider. Also benefiting from this collaboration is the surrounding community. By making these providers more visible in the community, we expand awareness and acceptance of children with special health care needs. We are able to provide educational opportunities to not only supporting families, caregivers, teachers, and professionals, but also community members who are interested in learning how to support our children and make the greater community accessible to everyone.
This all leads to the other key component of the Kinera Foundation Eastern Shore Regional Hub - Coordination. According to the Office of Genetics and People with Special Health Care Needs “Care coordination is the deliberate organization of patient care activities between two or more Participants, including the patient, involved in a patient’s care. The goal is to facilitate the appropriate delivery of health services.”
How many hours do you spend coordinating care for your child with special healthcare needs? In a survey conducted in 2004 (see reference below), 22% of parents of children with special health care needs spent an average of 2 hours per week and 4% spent up to 10 hours per week coordinating care. Kinera Foundation Eastern Shore Regional Hub, through its partnership with the Office of Genetics and People with Special Health Care Needs, is able to provide onsite care coordination with the aid of a Registered Nurse.
Imagine having someone assist in communication, navigation, and explanation of the many appointments we make for our children. Imagine having someone explain what those appointments end goals are, and how they ultimately benefit our child and family. Now imagine having someone assist in making those appointments, prioritizing those appointments, and helping to point you to the most appropriate provider for those services. Coordination at its finest.
Ultimately, Kinera Foundation wants to make raising children with special health care needs easier for all involved. By collaborating and coordinating services, we will see healthier children, healthier families, more robust services, and cost savings extended to everyone.
Gupta VB, O’Connor KG, Quezada-Gomez C. Care coordination services in
pediatric practices. Pediatrics. May 2004;113(5 Suppl):1517-1521