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Navigating Healthcare

Partnering with Your Child’s Providers

Preparing for Your Child’s Clinic Visit
Preparing for a Clinic Visit 3-17.pdf
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During Your Child’s Clinic Visit
During a clinic visit 3-17.pdf
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Tips and Tools for Parents
Tips and Tools for parents 3-17.pdf
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Try Out the Well Visit Planner!

Take 10 minutes to get a personalized visit guide for your child’s next well-care visit (learn more).

  • EXPLORE key issues and needs important to the health of your child and family
  • LEARN about important topics to discuss with your healthcare provider
  • PICK your top priorities and get educational information before the visit
  • PARTNER with your child’s provider by sharing your personalized visit guide

The Well-Visit Planner is based on national recommendations for parents/guardians of children 4 months to 6 years old.

Try it out now!

BRIGHT FUTURES FAMILY POCKET GUIDE: RAISING HEALTHY INFANTS, CHILDREN, AND ADOLESCENTS—2ND EDITION – Limited copies available

Developed for families by families, in partnership with the AAP and other professionals, this convenient, attractive resource is based on the AAP’s Bright Futures: Guidelines for the Health Supervision of Infants, Children, and Adolescents (3rd ed.). The 168-page guide will provide families with:
  • Information and encouragement for the roles families play every day in the health and well-being of their children
  • Information about the importance of well child visits for all children, including children and youth with special health care needs
  • Encouragement to speak up and to take active roles in their children’s care
  • Encouragement to form partnerships with other families and with professionals to improve policies, care, services, and support for all children and families
  • An overall framework for children’s good health and insight into all those who contribute to it
  • Current, comprehensive, succinct information about child development
  • Links to resources and further sources of information for children’s good health

Family Voices of Minnesota works with health care clinics to help them determine their level of implementing patient-and-family-centered care and provides technical assistance to make improvements.

Family Voices of Minnesota staff has a combined 60 years of experience in patient-and-family-centered care.

Family Voices staff conducts training and presentations for health professionals and consumers/families about patient-and-family-centered care.

What is patient/family-centered health care?

Patient-and-family-centered care assures the health and well-being of children and their families through a respectful family-professional partnership.

It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family-Centered Care is the standard of practice which results in high quality services.

The foundation of family-centered care is the partnership between families and professionals. Key to this partnership are the following principles:

  • Families and professionals work together in the best interest of the child and the family. As the child grows, s/he assumes a partnership role.
  •  Everyone respects the skills and expertise brought to the relationship.
  • Trust is acknowledged as fundamental.
  • Communication and information sharing are open and objective.
  • Participants make decisions together.
  • There is a willingness to negotiate.

How can you use your expertise? 

Participate in a patient/family advisory committee at the clinic or hospital that you use frequently.  If they don’t have patient/family advisory committees – help them start one.

Family-Centered Care Tools

The Institute for Family-Centered Care offers many resources, tools and information about patient/family-centered care:  www.familycenteredcare.org.

Excellent primary care is important for children, youth and young adults with special health care needs and disabilities.  

A Medical Home, sometimes called a health care home is quality, community based primary care that is based on a trusting and respectful relationship between the primary care provider and the patient and the patient’s family.

A great Medical Home uses a patient-and-family-centered approach, including:

  • Knowing it’s patients
    • Partnering with and learning from patients and families
    • Coordinating all aspects of care in partnership with the patient and family
    • Co-managing care with specialists and patients/families
    • Assisting with transitions
    • Providing connections to community organizations and resources
    • Is satisfying for patients, families, providers and clinic staff

For more information about choosing a primary doctor and developing a care plan check out the following links:

The American Academy of Pediatrics promotes and supports Medical Home across the country and has many helpful resources for families and physicians through the National Center for Medical Home: www.medicalhomeinfo.org

The Center for Medical Home Improvement offers great information and resources for providers and parents to create a medical home:  www.medicalhomeimprovement.org

Parents – you can create and maintain a detailed, internet based record of your families important medical information for free using Children’s Medical Organizer: www.childrenshc.org/cmo/index.asp

Patients and families should actively choose a primary provider who can best meet their needs and with whom they can develop a trusting relationship. 

Here are some ideas to help you choose a primary provider.

  1. Check with your insurance provider to get a list of primary providers in your area.
  2. Look for a provider whose style and office procedures fit your needs.
  3. Call the clinic and ask questions about the clinic hours, how easily you can get an appointment and other questions you have about the clinic itself.
  4. You could ask to speak with the clinic manager and ask which providers in the clinic work with people who have the same diagnosis you have.
  5. Talk with family, friends and other providers you work with about providers they recommend.
  6. Set up an appointment to meet with the primary provider, so you can discuss with him/her what you are looking for and learn more about how their clinic and practice works.
  7. Do you feel comfortable talking with the provider?  Is he/she easy to talk with and interested in your concerns? Is your language and culture understood and respected?
  8. Find out how partners in the practice communicate the needs of patients with chronic conditions so that if you/your child needs care after hours or on weekends you can work with someone who will understand you/your child’s unique needs?
  9. Choose a primary doctor who will: provide well care; sick care; help you coordinate you/your child’s chronic care needs, and see you as a partner in decisions about you/your child’s care
  10. Ask the doctor to help develop a care plan for your child. A care plan is a great tool that can help you and all your child’s doctors, nurses, school staff and others understand your child’s needs and communicate better.
  11. Be an active partner in care: Write down questions, concerns and observations about yourself or your child to share with the doctor.
  12. Think about your goals for yourself or your child and talk about them with the doctor so your goals can help guide the care.

A Care Plan should be a tool that you can use to communicate and coordinate your health care needs.

We have a care plan that is always with us, and the hospital and clinic are aware of her special health needs and openly give Miriam that much needed extra time and gentleness. All these little changes are making a significant difference not only for Miriam but for our family”.         

Miriam’s Mom

A care plan is a document that should be helpful and useful to you and summarizes:

  1. All of your chronic health conditions
  2. The status of those conditions
  3. Medications
  4. Physicians and other providers you work with
  5. Equipment you use
  6. Important health events
  7. Preferences you have for your care
  8. Typical protocols for treatments
  9. Normal/typical findings, eg. lab work, x-rays
  10. What to do in an emergency

This type of health summary can assist you in communicating you/your child’s needs to all providers and can be used as a basis for a health plan at school.

Resources to help you develop a care plan:

  1. http://www.medicalhomeinfo.org/for_families/
  2. www.syntiro.org/hrtw/tools/check_care.html
  3. www.medicalhomeimprovement.org/pdf/Comprehensive-Care Planning.pdf

Developing an Emergency Care Plan:   http://wimedicalhometoolkit.aap.org/resources/Careplan/  ERformInteractive.doc

Five Steps to Safer Health Care, from the Agency for Healthcare Research and Quality (AHRQ): www.ahrq.gov/consumer/5steps.htm

Be Involved in Your Child’s Health Care, from the Agency for Healthcare Research and Quality: www.ahrq.gov/consumer/20tipkid.htm

CONSUMERS AND FAMILIES AS COLLEGUES

Adult healthcare consumers with chronic health conditions and disabilities and families of children and youth with special health care needs and disabilities have important experience and expertise they bring to the health care system that no one else has.  They know how the system really works, not how it was “designed” to work.  That expertise is a valuable resource that healthcare systems need to respect and utilize effectively.

“Making patients and their families truly the force that drives everything else in health care is perhaps the most revolutionary tool of all. It’s importance is evident at the system level, but it comes though even more strongly at the personal level.”

Dr. Don Berwick

PATIENTS AND FAMILIES SERVING AS ADVISOR[…]
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Partnering with Health Providers Section[…]
Microsoft Power Point presentation [4.2 MB]

www.familycenteredcare.org/tools/downloads.html

Partnership between Family Voices and the Maternal Child Health Bureau

“Through collaborative action, we will be better able to monitor our progress, communicate the value of our efforts, and focus our limited resources on those activities that will best ensure enduring systems of care for CSHCN and their families within the ever changing health care environment” (MCHB).

Family Voices of Minnesota is dedicated to collaboration and partnership with other state organizations and agencies to provide quality services that are cost effective and meet the needs of families of CYSHCN in Minnesota and promoting family involvement in program development, implementation and evaluation.

Family Voices of Minnesota is committed to being actively involved on the state and national level in the partnerships that exist on the national level between Family Voices and MCHB and AMCHP.

Family Voices partners on a number of health related committees including:

  1. MCHB National Transition Center Advisory Committee
    1. Region 4 Genetics Collaborative Transition Workgroup
    2. National Center for Family/Professional Partnerships
    3. MN CHIP
    4. Health Care Home
      1. Outcomes Committee
      2. Patient/Family Council
  • Learning Collaborative Leadership Committee