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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.

Children who come to our program 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 child’s unique needs and provide ongoing support for family members.

  • Our program is designed to maximize health outcomes for the more than 275 children we serve. We create custom care plans for each child and family.

  • We provide 24/7 access to a primary care provider who is a member of the Beacon team to discuss questions and concerns with a goal of reducing unnecessary emergency department visits.

  • 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 also cares for the siblings of the enrolled medically complex child. This offers each family one medical home for all their 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.

Our goal is to offer family-centered care for all of our children and families. We want to simplify the process of managing each child's care by reducing the number of clinic visits and inpatient admissions each child has. The first step in this process is to spend time working to fully understand each family's needs and develop a unique care plan for each child.

Beacon Clinical Services

The Beacon Clinic provides outpatient services to our families at our Children’s Mercy Broadway location. Children and families are seen here on a regular basis according to their personalized care plan.

Get directions to the Beacon Clinic

We want to help rural community providers keep children with medical complexity in their home towns as much as possible. The Beacon Program has established 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 in which they live. These resources provide useful tips and information about technology, community assistance, food services and mental health.

Several national organizations provide helpful resources for Beacon Program families on their websites.

Primary care providers can fill out a referral form to refer a patient to the Beacon Clinic at Children's Mercy.

Treatments


Often children with medical complexity need mechanical devices to help treat their conditions. We help children and families with the use of these devices and ensure they have the proper resources to use them. Devices that many of our children have include:

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

  • Ventriculo-peritoneal shunt (VPS)

  • Vagus nerve stimulator (VNS)

  • Suction

  • Tracheostomy

  • Ventilator

  • Adaptive equipment

  • Diapers beyond normal age of toilet training

  • Wheelchair

We can also connect patients and families with additional support services, 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

11Q Chromosome deletion: Londyn's story

Londyn's mother, Karla, knew something was wrong with her baby. She followed her gut and persisted until Londyn received the diagnosis and care she needed at Children's Mercy Kansas City.

Meet Londyn
Londyn, a Children's Mercy patient, smiles for the camera with a piece of red clay stuck to her forehead

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.

Chromosomal abnormality: Odin’s story

Diagnosed with chromosomal abnormalities before birth, Odin Buser's medical care is complex. That's why his parents, Mark and Courtney Buser, have turned to the Beacon Program for help. The Beacon Program team is working with Odin's family to meet his unique medical needs and improve his quality of life.

Meet Odin
Odin Buser sleeping while wearing a nasal cannula.

Rett syndrome: Quinn's story

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.

Contact the Beacon Program team


(816) 960-8040

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 “5” 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.