What is a Medical Home?

Brief Overview 

  • A “medical home” is a coordinated care team with a coordinated care plan for an individual’s medical needs.   
  • Medical homes can be very useful any time an individual has more than one provider and more than one provider prescribing medications or treatments. They are not only for highly complex medical conditions. 
  • Medical homes have many advantages, but it’s important to select providers with the interest and qualities to make it work 
  • This article offers tips and questions to ask yourself and your family’s providers to help decide if your child or other family member needs a medical home. 

Medical Home: What is it? Does my child need one?  

A medical home creates a coordinated team and a coordinated care plan around all your child’s medical needs. When a family or youth works with a physician or clinic to build (create) a medical home they all work together to “wrap around” the different medical providers and services needed for that person’s best health and wellbeing.   

Medical homes don’t happen right away and don’t always look the same. Often a medical home is started and/or managed through a primary care or pediatric clinic, but if a person has complex medical needs, a specialist provider, practice, or clinic may be a useful “site” for the medical home. 

Medical complexity, or a diagnosis that affects multiple systems in the body or has the potential to be life-threatening, adds its own set of challenges to a medical home. A medical home for an individual who is considered medically complex often has multiple specialists as well as therapists, medication management, and other systems such as school or early intervention. A good medical home can be a communication hub that helps this large multi-disciplinary team stay on the same page and not work at cross purposes.  

No matter who provides coordination, a medical home supports your child and helps you as the parent or guardian with care coordination. Some families have medical homes “built” through a specialist’s office, some a primary care pediatrician, and others who are on Medicaid can have that coordination through a managed care patient care specialist.  

There doesn’t need to be medical complexity to start discussing a medical home with a child’s team; there just needs to be more than one provider working with the child/youth or young adult, and with different medications prescribed by different providers. A medical home helps everyone be on the same page and you as a family to be part of the overall care plan.  

When working with a provider to develop a medical home, remember that respect is a two-way street. Working with complex needs can be frustrating and scary and just because someone is a physician doesn’t mean they have all the answers.  

Ask questions and let your providers know when you don’t understand a decision or if you disagree with their decision. This can be done respectfully and can help build a strong line of communication.   

A medical home set up under this mutual respect with the family and patient at the center and as co-creators of care is at the heart of the medical home idea and an essential foundation for a medical home that works.   

When choosing a provider to help you create a medical home, here are questions to ask yourself:  

  1. Who is being valued and honored as the expert on the child or youth? Is it the family and the individual?  
  1. Is this team family and patient-centered?  
  1. Is there trust and respect that goes both ways?  
  1. Are Culture, race, language, and religion being honored?  
  1. Is an effort being made to understand not only the diagnosis but also its long-term impact on the patient and the family?   
  1. Are all an individual’s healthcare needs included in the care plan, including well-child and required immunizations?  
  1. Can you get help to find specialty care and community services when needed?  
  1. Do you feel supported in managing the care plan as a caregiver, family, or individual?  
  1. Is information provided to help understand choices and options in care, and is time set aside for discussion, with the family and/or patient being the person who decides?  

What other qualities are important when choosing a provider or practice to create a medical home? 

  • It’s helpful if your provider has at least some experience with the diagnosed condition. The relationship of the provider with a patient and their family can be just as important.  
  • Is the provider a good listener? Open communications are important so decisions are developed together, and the provider recognizes that the family and their youth/young adult are the experts in developing the young person’s care. 
  • If your child is a transitioning youth an important consideration may be a provider or clinic’s connection to adult care and their willingness to work with the youth rather than the adult caregiver in developing care plans. 
  • Does a provider work well with the other members of a child’s care team?  Are they willing to communicate and think proactively about sharing information? When a family with their child, youth, or young adult works with a provider in a medical home to make decisions together as a team, and information is shared with all members of the team, it provides a robust model for long-term working care plan development no matter who moves in and out of that family and individual’s medical home.  
  • A willingness to work with supports inside and outside the medical profession is also something to think about. A physician that is willing to work with a school and advocate for the child’s needs in a school environment goes a long way in setting up a strong IEP or 504 education plan.  

Additional advantages to consider taking time to work with a provider to develop a medical home:  

  • It can help in the early identification of additional healthcare needs or potential complications, creating a proactive approach  
  • Provides consistent, ongoing primary care   
  • Continuing coordination with a broad range of other specialty services  
  • Medical home team’s support can help in finding more medical services when needed  
  • More cost-effective care overall  
  • A child or youth’s doctors will get to know their needs and individual circumstances better  
  • The integrated partnership approach creates better healthcare outcomes  
  • Information is easier to share across the different providers, with therapists, schools, and the patient and families themselves  
  • Strong relationship building is emphasized in care  
  • Fewer visits to the emergency room and hospital when problems are found more quickly  

Family can be a constant in many children’s lives. They know the history of the child and they will be there in the future.  

Bringing a trusted medical provider into that circle to help with medical coordination and care can increase a family’s ability to look beyond the need to juggle the many issues of caring for a child with special healthcare needs.  

A medical home can spread the burden of coordination and decision-making between many hands and can keep everyone on the same page. This alone can be worth the extra work that you may face in the beginning.  

Resources  

Here are some useful online resources for creating and using a medical home: 

American Academy of Pediatrics  

Washington State Medical Home  

Related  

Tips to Organize Your Child’s Medical and School Documents 

  

Tips to Organize Your Child’s Medical and School Documents

A Brief Overview

  • Keeping track of important documents for your child’s health can save you time and give you less stress.
  • Take advantage of technology! If you choose to build a digital storage system, integrating it with your smart phone will make it easy to share information on-the-go with doctors, day care providers, school staff, and other professionals.
  • Plan a grab-and-go handout, notebook, or phone app to make it easy to find and share critical information during an emergency.
  • Read on for information about how to get started!

Full Article

Care planning and a well-organized system to keep track of important documents can save time and create comfort during uncertain times. This article provides some tips for building a “care notebook,” which might be a three-ring binder, an accordion file, or a portable file box—whatever makes sense for your organizational style and the types of materials you need to sort.

A portable Care Notebook can include the most current versions of medical and/or school documents, while older files can be archived separately. Here are some examples of formal documents you might organize:

  • Medical paperwork: diagnoses, assessments, surgeries, medications, provider contacts
  • School paperwork:  Individualized Education Program (IEP), Section 504 Plan, assessments, meeting notifications, progress notes, correspondence, telephone logs
  • Personal care notes: hygiene routines and concerns, food preferences and issues, sleep schedules and challenges
  • Community access: transportation needs, hobbies, clubs, activities

Click to print out the infographic above

Consider what else to include, such as business cards and contacts, a call log, a calendar, emergency/crisis instructions, prescription information, history, school schedule…

Each primary category can be a section of a large notebook or its own notebook. Consider how portable the notebook needs to be and where you might take it or share it. Will the size and shape be practical for where you plan to go? Do you need more than one notebook or system?

One way to make the most current medical information more mobile is to use an app on your phone or tablet. Here are two options:

  • Specifically for an iPad or iPhone and available through Apple, My Health Tracker was developed through Boston Children’s Hospital and Boston University.
  • Available for android phones through Google Play, MyCookChildren’s provides categories and ways to take pictures of documents and/or store information that you enter.

Both mobile apps help you track medication, care needs, illnesses, and appointments. Having this information in one place is especially helpful when you are working with specialists and medical providers from different medical groups that use different calendar and records systems.

Another way to maintain records and information is to create a digital “notebook” on a personal computer. You might build folders just like you would in a physical notebook. Dr. Hempel Digital Network provides 10 health-record applications with options that combine electronic medical records with telehealth capabilities. Other applications work with cellular phones. Here are three: MTBC PHRMedical Records, and Medfusion Plus.

Keep emergency information handy and easy to clean

A small “on the go” handout might be helpful for critical care appointments or emergencies. A laminated handout or a page tucked into a protective sleeve will be easier than a large notebook to disinfect after being in public. Depending on a child’s needs, caregivers might create multiple copies or versions of an on-the-go handout for easy sharing with daycare providers, school staff, babysitters, the emergency room, camp counselors or others who support children.

Key information for a quick look could include:

  • medications and dosages
  • doctors and contact information
  • emergency contacts—and whom to call first
  • allergy information
  • preferred calming measures
  • Plan for a caregiver’s illness

Another pull-out page or small notebook might include specific instructions about what to do if a caregiver gets sick. These questions could be addressed:

  • Who is the next designated caregiver?
  • Where can the child live?
  • What are specific daily care needs and medical care plans?
  • Is there a guardianship or a medical power of attorney?
  • Are there any financial or long-term plans that need sharing?

Step-by-Step Instructions

Building a Care Notebook does not have to be daunting. Most people start small and try different approaches until they find the best fit.  Here are a few ideas to start the process:

  • Choose a holding system that makes sense for your organizational style: notebook, accordion file, small file box, or a primarily digital system with limited “to-go” handouts.
  • Identify and label the document sections by choosing tools that fit your system: dividers, clear plastic document protectors, written or picture tabs, color coding, card holders for professional contacts, a hierarchy of folders on your computer…
  • Include an easy-to-access calendar section for tracking appointments.
  • Include a call log, where names are recorded (take time to spell full names correctly!) and phone numbers of professionals. Take notes to create a written record of a conversation. It is also practical to send a “reflective email” to clarify information shared in a call, then print the email, and tape it into the call log to create a more formal written record of the call.
  • A separate sheet of easy-reference information can be used to share with a caregiver in a new situation, such as daycare, doctor, camp, or a sleepover. Mommies of Miracles has an All About Me template that serves this purpose.
  • When appropriate, invite the child to participate.

Tools to help you begin

Quick and easy forms can help you start. Here are two options:

  1. Medical Home Portal Care Notebook and it comes in both English and Spanish
  2. Individual Healthcare and Emergency plans from PACER Center

Guidance to help build a more comprehensive care notebook is available from Family Voices of Washington. Printable forms can be done in stages and updated as needed to slide into a notebook or filing system. The templates include pull-out pages for Emergency Room or Urgent Care visits and forms to help organize medical appointments.

A child’s medical providers might help write a care plan and can provide specific contact information, medication lists and emergency contact procedures for each office. A school can provide copies of an Individualized Education Program (IEP), a Section 504 Plan, an Emergency Response Protocol, a Behavior Intervention Plan or other documents. If a child is in state-supported daycare (on location or in-home), staff can provide forms for emergency procedures and contacts.

You will thank yourself in the future!

Having information organized and ready can make it easier to apply for public services through the Social Security Administration, the Developmental Disabilities Administration (DDA), the Division of Vocational Rehabilitation (DVR) or others. For military families, a Care Notebook can make transitions and frequent moves easier to manage.

A well-established organization system also can help a child transition toward adult life. Easy access to a list of accommodations can ease that first meeting with a college special services office or provide a key set of documents for requesting vocational rehabilitation/employment supports. Easy access to key medical records can be the first step to helping a child learn what medications they are taking and advocate for an adjustment with an adult provider

Additional resources for long-term planning include: