Similar to the
last message, we'd like to share some information about a new project
MSGRC will support in the new grant cycle. One of our goals for the new
cycle is to increase the number of primary care providers creating
formal partnerships with family members within the medical home. To meet
this goal, MSGRC will support a new mini-project: the Mountain States
Medical Home and Family Partnership Project.
envisions that all individuals affected by or at risk for genetic
disorders have access to a medical home. While many of the essential
components of the medical home require services by a clinician, there
are others that can be provided by non-clinical participants in the
medical home. For example, families of children with special health care
needs often need access to community-based emotional and social
supports that are not typically provided by physicians or nurses.
The MSGRC has been
engaged with Brad Thompson, Director of the HALI Project, since 2008.
Mr. Thompson, who is the parent of a child with special health care
needs, has developed and piloted an innovative program that incorporates
parent partners into the primary care setting. The parent partners
provide the non-medical supports essential to promoting health and
providing a complete medical home. As the first parent partner, Mr.
Thompson provides these services in a pediatric practice in Amarillo,
Texas, where he interacts directly with other families of children with
special needs to provide emotional and social support services. Since
2010, Mr. Thompson has been engaged in a pilot project supported by the
Boys Town Clinic in Omaha, Nebraska, where he trains parents to serve in
similar roles in primary care practices.
States Medical Home and Family Partnership Project, which is set to
begin in January 2013, will expand this model of care to Wyoming over
the next two years. The Wyoming Department of Health, Children's
Special Health Program, has committed to helping recruit physician
practices to participate. The project will engage three
parents of children with special health care needs to serve as parent
partners with pediatricians in their communities.
With the help of
the Wyoming Department of Health, the project team is identifying
pediatric practices that are willing to participate in the project. The
next step will be to work with the practices to identify parent partners
that have a child with special health care needs and are interested in
helping other families. Each parent partner will be selected because of
their experiences in managing care for their own child with special
health care needs.
In January 2013,
the project will begin with the first parent training session after
which the parent partners will return to their community pediatric
practice to begin working within the pediatrician's office to help
families of children with genetic disorders and other special health
care needs navigate their community's available resources. The parent
partners will convene monthly via conference call with Mr. Thompson to
share their experiences, ask for guidance, and reflect on their
progress. Each parent partner will also have a monthly one-on-one call
with Mr. Thompson. Other in-person, one-day training events will be held
in late summer 2013 and in 2014. This project presents an opportunity
for MSGRC to pilot a new model of care within the Mountain States and we
are excited to build, develop, and implement an evaluation of this