Building Your Child’s Medical Team through a Medical Home Sherry Santa Laura J. Warren Texas Parent to Parent

What is a Medical Home? An approach to providing comprehensive medical care Not a building, house, hospital or home healthcare service Care team works in partnership with a child and a child’s family to assure that all of the medical and non-medical needs of the patient are met National Center for Medical Home Implementation http://www.medicalhomeinfo.org/ It is an approach to providing comprehensive primary care where the medical team works in partnership with a child and their family to assure that all of the medical and non-medical needs are met. The medical team can help the family and child access, coordinate and understand services that are important to the overall health of the child.

Care within a Medical Home should be: Accessible – not just the doors or ramps but hours, payment methods, and responsive to phone calls or emails Family-centered – recognizes parents as the core source of information on the child and builds a team that includes the parent Continuous – same team of doctors for infancy through transition to adult care

Care within a MH should be (continued) Comprehensive –addresses both acute and long-term care Compassionate – helps families access community- based support and resources Culturally effective – includes translation and interpreters but also a knowledge of a family’s culture, beliefs, etc. Coordinated- create a family care plan with the family to share with other professionals involved in the child’s care

Roles of a Medical Home Respects your child and your family Shares information with you and includes you in decisions Provides health care Works to catch problems early Medical Home Leadership Network, University of WA 2012

Roles of a Medical Home Helps you plan for & manage chronic health problems Finds specialists and has recommendations for you Connects you to community resources Lowers family stress Medical Home Leadership Network, University of WA 2012

Who is Part of a Medical Home? You, your child, your family Doctors, nurses, dentists, therapists, pharmacists, other care professionals Teachers, social workers, personal care providers, community organizations Other service providers that may offer assistance Other family, friends, neighbors

Roles of Parents/Caregivers You are a constant in your child’s life You are an expert in the strengths and needs of your child You are the supervisor of your child’s medical home You are a visionary who sees the “big picture” of your child and his/her future

Assess Your Medical Home - Does it: Treat you as a central & equal member of the medical home team Share mutual respect and trust with you and your child’s doctor Respect your culture and religious beliefs are valued Partner with one another to meet your child’s needs Medical Home Leadership Network, University of WA 2008

Assess Your Medical Home – Does it: Ensure that your child receives adequate care Help you find other providers and services Make you feel supported Make sure you understand your choices Medical Home Leadership Network, University of WA 2008

Ensuring Good Care in a Medical Home Know everyone on your medical home team Ask questions at each visit Ask for more time for your visit if needed Talk about important changes Make a care notebook and share it with your medical home team Medical Home Leadership Network, University of WA 2008

Ensuring Good Care in a Medical Home Ask for clarification if you don’t understand Ask for a written list of expectations until your child’s next visit Ask about after-hours care if needed Medical Home Leadership Network, University of WA 2008

How to talk with your Child’s Doctor to Start a Medical Home Important starting points Your doctor likely has had little formal training in how to provide a medical home Most doctors, like most professionals, welcome constructive feedback

“I have a concern” – Set the stage Ask yourself: What works for me in the practice? What does not work? Ask for a 30 minute office visit, if possible

“I have a concern” – Set the stage Frame the discussion as collaborative: Feedback sandwich: I really appreciate xxx about the way you care for my child. I need more help with xxx. You & your staff are great champions for my child, & I’m excited to work better together. Get buy-in: Is it ok if we talk about ways to work better together?

Help with access to care Ongoing relationship with team Do you have a first contact? (Back line, direct line to nurse or care coordinator) How does the practice set their schedule, and how can you see the same provider(s) when you visit?

Help with access to care Care is integrated across settings Does your practice know what is going on with your specialists, school, home health, community services?

What do you expect the practice to know? Tips: Provide oral update at beginning of each visit (or bring written summary)

Help with Access to Care (Continued) Tips (continued) Ask your specialist, school, coordinator to write a summary to share with your medical home Best practice for urgent issue is handoff and closed-loop communication. To facilitate, check in (“I let Dr. Specialist know that Dr. Primary was going to call. Do you know if they had a chance to talk?”)

Help with family-professional partnerships Families participate in decision-making and give feedback Does the practice survey families about their experience?

Help with family-professional partnerships Tips: If you get a survey, fill it out! Especially write in comments Write a letter thanking the practice when they have done a good job. Be SPECIFIC Sets the stage to be receptive to feedback when you really need a change Sample family survey http://www.medicalhomeimprovement.org/pdf/ Pediatric-Medical-Home-Family-Index- Survey_2005.pdf

Help with care coordination Are you getting care coordination? Are you regularly assessed for care needs? Does someone help you track referrals or test results? Do you need a team meeting?

Help with care coordination Tips: Ask for a care coordinator (medical home, insurance plan, community resources). If you don’t know, ask other parents where they get their coordination http://www.txp2p.org/parents/parentlistserv. html Ask for the doctor you have the best relationship with to schedule a team meeting. Bring someone to take notes

Help with care coordination Proactive plan of care Assess: Do you have a written portable medical summary, emergency action plan, or plan of care?

Help with care coordination Tips: Download a template and try to fill it out before asking your medical home to add to it http://www2.aap.org/advocacy/blankform.pdf Emergency Action Plan template Update your care plan at least every 6 months, or after a major change or hospitalization. Save all your summaries or notes in one folder to stay organized

Medical Home Checklist Your child’s pediatrician or family physician may not have all of the following pieces of Medical Home in their practice, but it will help to know what to ask for and what you can work on together. You can use this list when choosing a new physician for your child, or as a way to start a conversation with your child’s doctor about Medical home. Adapted from A NEW WAY…A BETTER WAY. The Medical Home Partnership: Building a Home Base for Your Child with Special Health Care Needs: New England SERVE http://www.neserve.org/neserve/med_hm.html

Your child’s primary care doctor and their office is accessible.  Available after hours, on weekends and holidays Accepts your child’s health insurance Office and equipment physically accessible to your child

Staff within your child’s primary care office know you and help you  Knows you and your child when you call Recognizes and accommodates your child’s special needs Responds to requests for prior approvals, letters of medical necessity for your child’s insurance or documentation for other programs and services Provides written materials in a language you understand

Your child’s primary care doctor and office staff help you to coordinate your child’s care  Follows up with difficult referrals Helps you to find needed services such as transportation, durable medical equipment, home care and ways to pay for them Explains your child’s needs to other health professionals

Your child’s primary care doctor and office staff help you to coordinate your child’s care  Reaches out to your child’s school or day care providers to help them understand your child’s medical condition Encourages and supports frequent communication between all persons involved in your child’s care (with your consent) Organizes and attends team meetings about your child’s plan of care that includes you and other providers

Your child’s primary care doctor and office staff work with you to plan your child’s care  Helps you set short-term (3-6 months) and long- term (the next year) goals for your child Gives you important information, such as recommendations or new treatments, in writing Works with you to create and update a written plan of care for your child’s medical and non- medical needs

Your child’s primary care doctor and office staff support you as a caregiver  Helps you connect with family support organizations and other parents in your community Provides information on community resources Finds and shares new information, research or materials that are helpful in caring for your child

Your child’s primary care doctor and office staff support you as a caregiver  Helps you to advocate on behalf of your child Plans for adult health care services (if appropriate for your child’s age)

Mental Health (English) How other families have dealt with mental illness. Watch the Video: Medical Home (English) Medical Home https://www.navigatelifetexas.org/en/videos/video/medical-home

Resources for Medical Home

National Center for Medical Home Implementation https://medicalhomeinfo.aap.org/Pages/default.aspx TxP2P Medical Home Toolkit http://www.txp2p.org/resources/medHome.html American Academy of Pediatrics https://www.aap.org/en-us/Pages/Default.aspx Medical Home Portal https://www.medicalhomeportal.org/living-with-child

Thank You! Sherry Santa Medical Education Program & Texas F2F Coordinator Sherry.santa@txp2p.org 737-484-9042 Laura J. Warren Executive Director Texas Parent to Parent Laura@txp2p.org 512-458-8600