• Medical Home Information for Families
• Medical Home Tools for Families
• Find a Pediatrician
• Brochures for Families
• Presentations for Families
  
  

Reactions by families on the Medical Home
Sign me up! I’ll take one of them!

It seems all organized.

Everything is at your fingertips that way—easy access.

Something like this would take the weight off…….you could relax a little….

Knowing that you’re not the only one fighting to get something—that there’s somebody else there doing that for you—being your advocate, it’s very positive.

With one, you wouldn’t have to repeat yourself 20 times—the same thing and you hope you tell them everything.

It sounds too good to be true.

Complete care. Complete care that runs smoothly.

From The Ohio Medical Home Focus Group Project. A collaborative effort by FACCT–The Foundation for Accountability’s Child and Adolescent Health Measurement Initiative (CAHMI), the Department of Health (ODH), and the Ohio Department of Job and Family Services (ODJFS).

Medical Home Information for Families
A Medical Home Includes
A partnership between your family and your child’s primary care clinician
A relationship based on mutual trust and respect
Connections to supports and services to meet your child’s and family’s needs
Respect for your family’s cultural and religious beliefs
After hours and weekend access to medical consultation about your child
Families who feel supported in caring for their child
Your primary care clinician working with your team of other care providers

Tips for Families: Building Medical Home Partnerships
When you visit your child’s primary care clinician's office:
Bring a list of questions or concerns to discuss
Share information on how your child is changing (progressing, regressing, etc.)
Ask about resources that may help your child and family
Ask about how to get care after hours if needed
Ask to meet the office staff that will be working with you and your child
(Nurses, referral coordinator, billing person, etc.)
Show appreciation

The Benefits of a Medical Home
1. You regularly see the same primary care clinician and office staff who know your child and family;
Who partner with you in coordinating care for your child
Exchange information with you honestly and respectfully as you learn from one another
2. Your family feels supported in finding resources, for all stages of growth and development of your child
3. Your family is connected to information and family support organizations
4. Your Medical Home partnership promotes health and quality of life as your child grows and develops into an adult

- Adapted form the brochure Medical Home: Families and Providers Working Together - developed by the Washington Medical Home Leadership Network.

Interactive Web Based Medical Home Overview: What Families Need to Know about a Medical Home
Explains the Medical Home Model for families and children with special health care needs. It explains the family-professional partnership and how it relates to accessing quality health care. The primer goes on to explain how families can become proactively involved in Quality Improvement Teams in their primary care provider's practice. There are links to the AAP web site describing what others states are doing to promote Medical Home, a downloadable Parent-Partner Guide, Power Point presentations, and information about the Illinois Title V CSHCN Program. Developed by the Illinois Medical Home Team.

Catalyst Center Health Insurance and Financing Toolkit: (http://www.hdwg.org/catalyst/Financing_Toolkit.php)
The Catalyst Center is a national center dedicated to improving health care insurance and financing for children and youth with special health care needs (CYSHCN). They have created a toolkit of information for families on health insurance and financing that can be accessed at the link above.

Texas Medical Home Toolkit for Families Toolkit
Information for families on the concept of Medical Home and how to get one set up for your child or clients who have special health care needs. Includes:  information to take to my child’s doctor about the help I need from him/her, and information on how to provide support to families who would like to have a medical home.

Parents as Partners in the Medical Home
Published in Exceptional Parent magazine in 2002.

• Helping Children with Special Healthcare Needs
  - Karen Burstein, PhD, and Tanis Bryan, PhD
  The Medical Home is putting the emphasis on parents’ opinions on the best way to provide healthcare for children with special needs.
• What Should Medical Facilities Look Like?
  -Karen Burstein, PhD and Tanis Bryan, PhD
  Access to basic necessities and conveniences in medical facilities can make an enormous difference to families and children.
• Choosing a Pediatrician
  -Tanis Bryan, PhD, and Karen Burstein, PhD
  Parents of children with disabilities define qualities that make pediatricians and staff effective.
• A Family-Professional Partnership
  -Merle McPherson, MD, MPH, Gloria Weissman, and Bonnie Strickland, PhD

Tools for Families

• "Voices from Home 2006", Family Voices
  This 65-page report provides information on activities of the Family Voices network of family and youth leaders in the states. Also included are highlights from the FV project, Kids as Self Advocates (KASA), data summaries, and charts of FV state initiatives and partners.
• Family Survey of Medical Home Outcomes
  This survey helps family's assess their child’s health needs, family/caregiver concerns and satisfaction of the care they are receiving and the amount of activities and services they are coordinating for their child. Developed by the Center for Medical Home Improvement.
• A Guide for Parent and Practice "Partners" Working to Build Medical Homes for CSHCN. A resource for families serving as partners in the medical home process. Developed by the Center for Medical Home Improvement
• Quality Indicators of an Effective Pediatrician for Children with Special Healthcare Needs Survey
  ...a useful tool for parents and caregivers as well as physicians and staff. It provides a set of standards that parents and caretakers can use to evaluate the quality of care their children are receiving. Physicians can use it to evaluate the quality of care they are providing to children with special healthcare needs. Physicians also can use the Survey as a guideline for staff training and office management. Developed by the Arizona Medical Home Team.
• Tools for Parents of Children with Special Needs
• Ableplay
  When it comes to play time, children with disabilities are no different than other children.  They too crave the perfect toy, the one with the right amount of bells and whistles, which will bring joy to their lives.  The task of finding the right toy that is not only age appropriate but will also accommodate the needs of a child with a disability, falls in the hands of parents and family members who want nothing more than to please their child or grandchild.  But their toy-shopping experience is different than other parents or family members whose children do not have special needs.  There are thousands of toys from which to choose, but finding just the right one to match the varying abilities of each child with special needs can be a challenge.

  Enter Ableplay.org (http://www.ableplay.org ), a toy rating system and Web site that provides comprehensive information on toys for children with special needs so parents, special educators, therapists and others can make the best choices for the children in their lives with disabilities.

  Developed by the National Lekotek Center, the leading nonprofit authority on play for children with disabilities, AblePlay will provide parents, and the professionals who work with them, access to the most useful, product-specific information about the top play and learning products and toys for children with disabilities.

• www.coping.org/specialneeds/coping.htm
  This book by James J. Messina, Ph.D is “intended to be used by parents as a motivational reader and in parent support groups as an outline for discussion and stimuli for emotional response”.
  
  Topics include:

• • Handling the Shock of Diagnosis
  • Bonding with Your Child
  • Lifelong Normalization
  • Addressing the Spirituality of Parents and Their Children with Special Needs
  • Communicating with Children About Their Special Needs
  • Handling Discrimination
  • Parental Advocacy
• Becoming a Resilient Family: Child Disability and the Family System
  This monograph from the National Center on Accessibility addresses not only how having a child with a disability can impact the family system, but also how families can use their circumstances to become more resilient and healthy. It also includes recommended reading for both adult and child family members. To access this resource, go to: www.ncaonline.org/monographs/17family.shtml

Find a Pediatrician
The AAP Pediatrician Referral Service is intended for use by the general public to allow them quick access to information on pediatricians. If you are looking for a pediatrician who specializes in the care of children with disabilities and or children with developmental or behavioral issues, you can use the Pediatrician Referral Service to search for a pediatrician by specialty. You can also search for a pediatrician by last name, city, state, zip code or area code.

Click here to access the AAP Pediatrician Referral Service. (This link will take you to information on "terms and conditions of use" of this service)

Brochures for Families

• A NEW WAY…A BETTER WAY. The Medical Home Partnership: Building a Home Base for Your Child with Special Health Care Needs: Brochure
  This large-format brochure was developed by New England SERVE for families in Massachusetts. It defines the Medical Home Partnership and provides a checklist for families to use in choosing a new physician for their child, or as a way to start a conversation with their child's doctor about Medical Home. The back page provides resources for building medical home partnerships in Massachusetts. If you are interested in replicating this brochure with specific information for your state or community, please contact Alexa Halberg at ahalberg@neserve.org or by phone: 617/574-9493.
  
  
• A Medical Home: Consistent, Knowledgeable, and Comforting Health Care Fact Sheet
  A message from Family Voices.
  
  
• Medical Home: Families and Providers Working Together Brochure
  This brochure provides definitions, benefits and tips for families about having a Medical Home for their child in Washington State. Available in PDF format in: English and Spanish.
  
  Brochure developed by the Washington State Medical Home Leadership Network.
  
  
• Parent Tips: Building Early Intervention Partnerships with Your Child's Doctor Brochure
  This brochure includes practical tips from and for parents in how to choose, partner and talk with your child's doctor, how to be an advocate for your child in early intervention and involve your doctor in early intervention services for your child. Available in: English · Cambodian · Chinese · Korean · Laotian · Russian · Spanish · Vietnamese.
  
  Brochure developed by the Washington State Infant Toddler Early Intervention Program (ITEIP) and the University of Washington Center for Human Development and Disabilities (CHDD).
  
  
• What is a Medical Home: How Can it Help Your Child with Special Needs Brochure
  This brochure helps define a Medical Home and how can you work with your doctor to improve care for your child. Developed by the South Carolina Medical Home Team.
  
  
• Family Brochure: Every Child Deserves a Medical Home Brochure
  The Illinois Title V CSHCN program, the Division of Specialized Care for Children (DSCC) has developed a brochure to help families of CSHCN better understand how they can work with their primary health care provider to establish a Medical Home.

• Define the Medical Home concept.
• Define the common elements and assess whether they have been incorporated into your child’s care.
• Understand the personal importance of having a Medical Home.