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The Beacon Program at Children’s Mercy provides a pediatric medical home for hundreds of children with medical complexity. Our team streamlines the health care process for parents with at least one child with medical complexity, from birth to 21 years. Our patients typically have been diagnosed with complex, systemic, medical problems and use mechanical devices to treat their conditions. Complex or systemic medical problems can include:

  • Cerebral palsy

  • Neurodegenerative disease

  • Neuromuscular disease

Beacon program staff


Families in the Beacon Program are cared for by a comprehensive medical team. Each family is seen by a primary care provider. The primary care provider works with a team of medical specialists, nurse practitioners, social workers, clinical service coordinators, case managers, registered dietitians and allied health providers to create care plans to meet each patient’s unique needs and provide ongoing support for family members.

  • Our program is designed to maximize health outcomes for the more than 275 patients we serve. We create custom care plans for each patient.

  • Patients are able to avoid unnecessary emergency department visits and inpatient admissions because of access of 24/7 access to a primary care provider who is a member of the Beacon team.

  • Families experience greater satisfaction with the health care system because our team works with all specialists involved in the patient’s care and community providers.

  • Our program includes care for the primary patient and their siblings (those with mild complexities and those who require routine pediatric care.) This offers families one medical home for multiple children.

  • The Beacon Program has achieved the highest level of recognition possible from the National Committee for Quality Assurance as a patient-centered medical home. To achieve level III recognition, the Beacon Clinic met or exceeded rigorous patient-centered medical home standards for addressing patient needs. Only 10 percent of all primary care practices nationwide have earned this recognition.

"The Beacon Program is where children with complicated or systemic medical problems, and their siblings, can come for all their medical needs."

Ingrid Larson, Director of the Beacon Clinic and Beacon Program

 

Our goal is to offer family-centered care for all of our patients’ families. We want to simplify the process of managing care, reduce patient visits and inpatient admissions. This starts by discovering and understanding the patient and family’s needs and developing a care plan unique to each patient. Our care team has been with some families for years, while others have been transitioned back to their primary care provider for ongoing care because their medical needs become less complex.

Beacon Clinical Services

Our Beacon Clinic provides out-patient services to our patients at our Children’s Mercy Broadway location. Patients and families are seen here on a regular basis according to their personalized care plan.

The Beacon Clinic’s patients have medically complex conditions and face a number of obstacles to their medical care. For some, transportation can be a challenge, especially in bad weather. Exposure to possible infections and illnesses from other patients also can be a concern for some. But for all, the goal is to keep them out of the emergency room and as healthy as possible. The Beacon Clinic’s telemedicine home visit program is the first of its kind at Children’s Mercy, putting a high-tech twist on the time-honored house call. The Beacon Program is led by Ingrid A. Larson, MSN, MBA, DNP, RN, APRN, CPNP, Director.

We want to help rural community providers keep children with medical complexity in their home towns as much as possible. The Beacon Program is excited to announce our consultative services for children with medical complexity who qualify for our program but want to stay closer to home.

The staff at the Beacon Program at Children's Mercy have collected a range of resources to help families find extended support within the community. These resources provide useful tips and information about technology, community assistance, food services and mental health.

Explore several national organizations that provide helpful resources for Beacon Program families.

Treatments


Often our patients treat their conditions through the presence of mechanical devices. We help our patient families and parents access these resources and properly learn how to use aides which may include:

  • Feeding tubes: gastrostomy tube (G-tube), gastrostomy-jejunostomy tube (GJ-tube), nasogastric intubation tube

  • Ventriculo-peritoneal shunt (VPS)

  • Vagus nerve stimulator (VNS)

  • Suction

  • Tracheostomy

  • Ventilator

  • Adaptive equipment

  • Diapers beyond normal age of training

  • Wheelchair

Our patients also often supplement the treatment of their condition through other therapies including:

  • Help with daily living activities

  • Home nursing or personal care aides

  • Home or outpatient therapies

  • Physical therapy

  • Occupational therapy

  • Speech therapy

  • Vision therapy

Stories

Rett Syndrome: Quinn's Story

Six-year-old Quinn Cunningham has Rett Syndrome, a progressively debilitating neurodevelopmental disorder. That's why her family relies on the Beacon Clinic to coordinate her complex care for respiratory, gastrointestinal and neurological issues.

Meet Quinn
Children's Mercy patient Quinn receiving care in the Beacon Program and Clinic.

Spinal Muscular Atrophy: Daniel's Story

Though Daniel Andersen was diagnosed with spinal muscular atrophy type 2 at just 2 years old, he’s been able to pursue his college dreams with help from The Children’s Mercy Beacon Program, which serves as a medical home for children with complex or systemic medical problems.

Meet Daniel
Children's Mercy patient Daniel receives care at the Beacon Program and Clinic.

Chromosome 15q Duplication and Deletion Syndrome: Marcus' Story

Shaun and Tasha Rye share what a difference the Children’s Mercy Beacon Program has made for their son, 2-year-old Marcus. Marcus has a medically complex condition caused by chromosome 15q duplication and deletion syndrome, a genetic defect, resulting in global developmental delays, congenital heart disease including atrioventricular septal defect with restrictive VSD, DORV and PDA, supraventricular tachycardia, gastroesophageal reflux disease, intestinal malrotation, asthma, dystonia, cleft palate, and bilateral club feet. Marcus also has bilateral sensorineural hearing loss, wears glasses, has a gastrostomy tube for medications, and takes continuous jejunostomy tube feedings.

Contact the Beacon Program team


(816) 960-8040

Fax: (816) 302-9738

Send us your questions.

Contact the Beacon provider on-call


The on-call line is for currently enrolled families and is available Monday - Friday, 4 p.m. - 8 a.m. and 24 hours a day holidays and weekends.  Press “0” to reach an operator and then ask to have the Beacon provider on-call paged.

(816) 234-3000 

 

Beacon Patient Family Advisory Council

Learn more about the Beacon Patient Family Advisory Council and how to apply.