Medical Home Project

This is by far the largest project we have ever taken on, and we have been blessed to see positive results in the practice we work in as well as other practices that have allowed us to train family members to work in partnership with them.

The Model

Based on our success in Dr. Medford’s practice, we began to explore ways to replicate our process so more families could be reached. The concept of the "medical home" (also known as the Patient-Centered Medical Home, or PCMH), has evolved since introduction of the terminology by the American Academy of Pediatrics in 1967, which was envisioned at the time as a central source for all the medical information about a child, especially those with special needs. Efforts by Dr. Calvin C.J. Sia, a Honolulu-based pediatrician, to pursue new approaches to improve early childhood development in Hawaii in the 1980’s laid the groundwork for an Academy policy statement in 1992 that defined a medical home largely the way Sia conceived it: a strategy for delivering the familycentered, comprehensive, continuous and coordinated care that all infants and children deserve.

In 2002, seven US national family medicine organizations created the Future of Family Medicine project to transform and renew the specialty of family medicine. Among the recommendations of the project was that every American should have a personal medical home through which to receive his/her acute, chronic and preventative services. The services were to be accessible, accountable, comprehensive, integrated, patient-centered, safe, scientifically valid, and satisfying to both patients and their physicians.

As of 2004, one study estimated that if the Future of Family Medicine recommendations were followed (including implementation of personal medical homes), health care costs would likely decrease by 5.6%, resulting in national savings of $67 billion per year, with an improvement in the quality of the health care provided. A review of the literature published the same year determined that medical homes are associated with better health, lower overall costs of care and with reductions in disparities in health.

Research indicates that parents who receive support from other parents are better able to adjust to their child’s disability and have better attitudes, increased coping abilities, and greater problem solving ability. The HALI Project Medical Home Model trains Parent Consultants to serve as the “hub” in primary care practices for coordination of health services and family support, and to ensure that all available services are fully integrated into a patient’s primary preventive health care program.

Our model begins with a parent who is involved in the process because of his/her experience in raising their own children with special needs. Parents with similar experiences are simply better able to understand the realities and frustrations parenting a child with special needs presents and can offer both empathy and practical advice.

Once a parent has been identified by a pediatric practice as a potential Consultant, our goal is to educate them to help families access and coordinate specialty services, link to community resources, overcome barriers, and navigate the various social service systems.

After the potential Consultants have been identified, we ensure that they are well connected to their state and local family support organizations. This connection opens the door for them to obtain knowledge of local and state resources and how to access them efficiently. Following the initial screening, the potential Consultants (along with any interested office staff) participate in a three-day training workshop. The training focuses on personal emotional awareness and learning to discern where a patient’s family might be on the emotional journey that occurs when their children have special needs. We also have training segments focusing on conflict resolution and managing difficult conversations. Following the initial training, we use monthly conference calls that include the Project’s leadership group and the Consultants. During this time, we deal with any practical challenges the Consultants are experiencing. They also share (while protecting a family’s right to privacy) challenges and successes they have experienced which gives the team an opportunity to learn from each other. We use the last part of the call to provide ongoing education by addressing common challenges the Consultants are experiencing or teaching a new skill they can use in working with their families.

Consultants can also call or correspond with us through email to get help at any time. One of our greatest concerns is the emotional well-being of our Consultants. These calls and emails address any cases the Consultant wants advice on, the practical nature of how they are blending into the routine of the pediatric practice, and most importantly, how this work is impacting the Consultant and his/her family. The work can be extremely emotional at times. Because of the support the Consultants receive, they are not another person to be taken care of in the practice. In fact, the Consultants often become emotional support for other members of the practice in challenging situations because of their credibility as parents and their training in emotional support.

Our model supports and enhances many of the existing components of the Medical Home, which is included in all Federal healthcare legislation as well as best practice literature published by the American Academy of Pediatrics and the American Academy of Family Physicians:

  • Comprehensive care ~ The Consultant bridges the gap between the medical practice and other areas of concern for the parent – education, social services and family issues.
  • Family-centered care ~ One who has experienced trying to balance the challenges that come with a child with special needs along with the needs of other family members can assist the medical team in creating a strategy that fits within the family system.
  • Coordinated care ~ Coordinating medical care among specialists and subspecialists can be a full-time task. That medical care coordination does not consider the other arenas of a family’s life that can be complex.  A family partner can help to coordinate a family’s concerns in all of these areas.
  • Compassion ~ While most doctors take some time to provide this element, it is important for them to focus on their area of expertise, which is medicine. An onsite Consultant who walks the emotional path with the patient’s family allows the doctor to operate more efficiently, thereby providing more attention to the patient.

Providing these Medical Home components efficiently and effectively addresses dissatisfaction with the current system. Based on information gathered by the Boys Town Institute for Child Health Improvement in Nebraska, parents expressed frustration that doctors focus solely on the acute health needs of the child and often fail to see the larger picture: the child is part of a family and a community. Because of this, the child usually receives the necessary medical treatment, but the needs of the family often go unattended. The survey reported a high level of stress associated with a child with special needs, and a disconnection with resources available in the community. Physicians reported similar frustration. They recognize the unmet needs but feel unequipped to meet those needs.

The Pilot

After several years of discussing the model in various settings, we were invited to The Boys Town Institute for Child health Improvements in 2009 to assist in building the capacity of the medical homes participating in their learning collaborative: The Patient-Centered Primary Care Collaborative (PCPCC) in Washington, DC. Through this pilot program, 6 pediatric practices in Nebraska were chosen to house a Consultant trained using a combination of our methodology and pieces of the Rhode Island Pediatric Practice Enhancement Project (PPEP).

Through our work in Nebraska, we learned that every practice has a parent that can fill the Consultant role, which was a concern pediatricians expressed as we were introducing our concept. We also learned how much value the Consultant can add, not only to the practice but to the community as a resource. Just a few weeks into the project, our Consultants were creating referrals for community groups and receiving referrals from other pediatric offices.

The Importance of Doing This Work

“Creating a new theory is not like destroying an old barn and erecting a skyscraper in its place.  It is rather like climbing a mountain, gaining new and wider views, discovering unexpected connections between our starting point and its rich environment.  The point from which we started still exists and can be seen – it just appears smaller and forms a tiny part of our broad view gained by the mastery of the obstacles on our adventurous way up.”

- Albert Einstein, quote from Andrew Weil’s “Spontaneous Happiness”

What Are We Trying To Do?

We are working to provide the patient, caregiver, and provider a better experience that leads to improved health outcomes for everyone.  Family members who have been in the system for a while and have maintained their emotional health are the best equipped people to help other families through the non-medical pieces of a very complex puzzle.

First, we understand the emotional issues that come with caring for a person with special needs or chronic illness.  We understand what it’s like to be overwhelmed initially by a diagnosis and then adapt to a new world that doesn’t look anything like the one we imagined.

Second, we have developed a personal list of resources that not only includes the right numbers to call, but also the right person to talk to at that number to get things done.  This expertise alone can save families and providers significant amounts of time.

Third, we can help families identify areas of stress in their lives and provide coping strategies to deal with them.  From dealing with extended family to learning how to have difficult conversations in a way that maintains relationships with the people who are trying to help us, we have found things that work and things that don’t.

Finally, and we believe most importantly, we will encourage families to dream new dreams for their children and find peace while taking care of adult family members.  While these things are difficult to measure, they are the true value in serving our families.

Why Are We Doing This?

We believe we are uniquely suited to do this work. Karen and I have Hali’s (our daughter who has a variety of physical and cognitive challenges) lifetime of experience. This also includes her transition to the adult healthcare world.  We also have the experience of being a primary caregiver of a terminally ill adult that included being involved in “end of life” decision-making, and ultimately dealing with his passing.

We have seen the benefit of family partners sharing their expertise within the primary care practice setting.  Because of their unique perspective and experience, they can provide a much higher level of comprehensive care in a way that allows a practice to work more effectively and efficiently.

We are looking for partners who can operate as a true partner in the practice, providing a different skill set than anyone else.  Providing their expertise in the proper place and allowing the rest of the team to do what they do best will create a better experience for everyone involved – most of all the patient.

Our Goals

1. Preserve and strengthen the role of family members as the most comprehensive care coordinators for their loved one.

2. Provide an onsite resource for providers that will allow them to operate at the top of their license more consistently and provide more comprehensive care for their families.

3. Where children are involved, we want to encourage families to dream new, appropriate dreams for their children and to allow those dreams to guide the decision-making process for their kids.

4. Where adults are involved, we want to provide supports in ways that lessen the stress on the caregiver, especially around emotional issues such as changing roles and even end of life issues.

5. Produce saving to the healthcare system by reducing emergency room visits, hospital readmissions, and shortening the average length of hospital stays by providing support systems that keep people well.

Our Motivation For This Project

“Success in life may have more to do with having quality relationships than with simple compliance and academic knowledge.”

- Barbara Doyle, author and mother of children with autism

Haim Ginott said this about teachers:

“I’ve come to the frightening conclusion that I am the decisive element in the classroom.  I possess a tremendous power to make a student’s life miserable or joyous.  In all situations, it is my response that decides whether a crisis gets escalated or averted, and a student valued or de-valued.”


I personally believe this is even more true of a caregiver.  We will be the ones who first see the gifts, talents, and value that our children bring to this world.  We will also be the one constant resource throughout their lives in creating an opportunity for them to reach their potential.  We will also be the ones giving peace, comfort, and dignity to ailing family members, and honor to aging parents.  Providing families with the resources and supports that help them make these things happen will be one of the greatest works a person can do.

Medical Home Purpose Statement

Our purpose is to produce a system of care that is more effective and efficient, producing higher levels of satisfaction for both the patient and the provider, and cost savings to our healthcare system.

Our Vision

Our vision is to provide primary care practices a cost effective way of providing the patient/family engagement piece of the medical home in a way that improves both patient and provider satisfaction while lowering costs to the system.

Our Mission

Our mission is to help primary care practices identify healthy family/patient partners, then train and support those partners to provide the “non-medical” pieces of the medical home model.

Our Values

Each piece of this project is built on the foundation of these values.  While we hope to always be learning new and better ways of doing things, those new methods will always be firmly grounded in these values.

1. We are patient centered.  Services and supports should be provided in ways that ensure the patient’s needs are being met.  Every piece of the system of care should recognize the value of the patient’s permanent relationships and consider them as they develop plans of care.

2. We are family focused.  The patient should always be viewed as part of a family system and treated accordingly.  Family members should be engaged in conversation because they have valuable insight that will enhance almost any plan of care.

3. We provide individualized support.  We will help develop insight into our families’ situations which will allow the practice to provide higher quality, individualized care.

4. We are culturally competent.  We will build relationships with our families to get to know what is important to them in terms of relationships, customs, and care preferences.

5. We work at both the individual and system levels.  When we work with families to help them with the things that are important to them, we will certainly uncover things within the system that need improvement.  As we discover those issues, we can work within the community to make services more available.

6. We are community based.  By hiring partners from within community practices, we can assure families that we will be accessible and knowledgeable about local services available to families.  We believe this will also allow us to identify local partners who may be willing to support our work in numerous ways.

7. We build partnerships.  Our philosophy is built around the idea that families have information that only they can bring to the care discussion.  That makes it essential to see them as partners in the process if we are going to provide them with the highest quality, individualized care.

8. We always take a strength-based approach.  We believe that dignity is supported when we discover the strengths of a patient and family and allow them to do what they can in those areas.  Our job is to encourage them in those things, and add support in the areas that are important to them but they cannot do for themselves.

9. We work to establish collaborative, community networks.  It is important for us to build relationships with other individuals and groups who are also trying to serve our families.  By doing this in communities, we have found that access to those supports has improved.  By working together, we have seen limited resources stretched further to serve more families.

10. We work to establish informal community support networks.  Finding like-minded local support groups can lessen our dependence on more formal systems.

11. Our project is cost effective.  We put this last because at the end of the day, we always have to have a “but what does it cost?” conversation.  If a practice is large enough to warrant a full-time partner they can certainly do that.  But if a practice is smaller and might only need a partner on a part-time basis, they can arrange appointments in a way that maximizes the partner’s time in the office.

Training Curriculum Outline

Click here to open the outline.

Words From Some of Our Partners

Mountain States Genetics Regional Collaborative Center

Patient-Centered Primary Care Collaborative

Amarillo Children's Clinic

Testimonials

“We are so thankful to have Stephanie (consultant in Omaha, NE) as a part of our office team.  We have many families who come to our office by public transportation, which means they are sometimes late and have to be worked in or they are very early and have to sit and wait.  Stephanie makes that time beneficial for them by talking to them about their situation, needs, etc.  Our families tell us that coming to the doctor is a better experience since she joined us.  On several occasions she has helped us to understand some of the underlying challenges our families are facing that really challenge their ability to work with us.  What looked like non-compliance in many cases was, in reality, parents doing the best they could in the middle of very tough circumstances.  We probably would never know about those circumstances if it weren’t for Stephanie’s ability to connect with them and learn more about them.”

- Office Manager, Omaha, NE

"We had been struggling for months trying to get our HIPP (Health Insurance Premium Payment) benefits and our Medicaid cards. When we told Jennifer (consultant in Lincoln, NE) about our situation, she took our information and said she would get to work on it. Within a week we received our Medicaid cards and in two weeks we received our first HIPP reimbursement - covering the three months since started the process! Thank God for Jennifer!"

- Dad, Lincoln, Nebraska

"I'm a single mom and I was really lost on how to help myself and my new baby. Cindy (Consultant in Hastings, NE) told me about the "Kids Connect" program and WIC. She also helped me with the paperwork to start receiving services from them. Now when I'm not sure what to do, I know who to call. That's such a blessing."

- Mom, Hastings, NE

"Having Milagros (Consultant in Omaha, NE) on our team has been a bigger blessing that we ever imagined. Our office is in a predominantly Spanish-speaking part of Omaha, and there is a high level of mistrust of the Anglo community. Milagros' ability to literally speak their language and understand their concerns has helped a great deal in lowering our number of missed appointments and improving the follow-through of things to do once they leave our office."

- Practice Partner, Omaha, NE

"Jennifer's presence in our lives has been a tremendous help and comfort as we try to sort through all of the changes our state is making in the way they serve our kids. Having at least one person/thing in our lives that is sort of a constant is a huge blessing in the middle of so many things changing."

- Mom, Lincoln, NE

"Cindy was able to help me through a very difficult situation. I received a big raise at work. That was a big blessing until I was notified that it caused me to go over the income limit and we would lose some services for our son, including his therapy. Cindy worked with the doctor team to submit an application for our son to receive a Medicaid waiver. I wouldn't have known where to start, but Cindy was able to gather the needed documents in a short period of time and sent to the state office. We were able to get his services back in a short time, with only a small lapse in his therapy."

- Mom, Hastings, NE

"We have always struggled to get parents to attend the workshops that we put on in the community to provide them with information that can help them in a variety of situations. Since Cindy and Jennifer began working in their communities and personally inviting and encouraging families to come to these meetings, attendance has improved as much as ten-fold. In one case where they brought in a guest speaker to encourage parents, they had over 100 people attend - far and away the biggest crowd we've ever had in that community."

- Parent Training & Information Center of Nebraska