Children & Youth with Special Health Care Needs (CYSHCNs) – Annual Report FFY 2019

NPM 11 – Medical Home: percent of children with and without special health care needs, ages 0 through 17, who have a medical home.

Children’s Special Health Services continued to provide many services to improve and enhance the medical home for CYSHCN during FFY 2019.

The HALI Project Montana Parent Partner Program -

Parent Partners (PPs) are parents of CYSHCN who are personally experienced and professionally trained to help other families navigate the complex system of care for CYSHCN. They work in clinics and receive referrals from clinic providers who identify families in need of additional support. PPs assist families by connecting them with community resources; helping to improve communication with their child’s medical providers; teaching them to be effective advocates for their children; connecting them with programs and individuals to help them better understand their child’s rights in the school system; and, helping families prepare to transition from pediatric to adult healthcare.

In FFY 2019, The Montana Parent Partner Program (MPPP) continued to serve families and their children in primary care clinics in Billings, Bozeman, Butte, Great Falls, Kalispell and Missoula.  Statewide virtual support is available through a clinic in Helena that provides the only comprehensive biochemical/medical genetics services available within several states. With FCHB Children’s Special Health Section (CSHS) support, the State Coordinator and Program Director continued efforts to expand the program into additional clinics. Clinic locations were added in Helena and Billings. Regardless of where a family lives in Montana they can connect to a PP through the Program’s virtual support option that was also added.

Virtual support options are also provided by many of the major cities, including: Billings, Missoula, Kalispell, Great Falls, and Butte. Families are matched with a PP based on proximity, diagnosis or need.  In FFY 2019 Parent Partners served 232 children with special health care needs totaling nearly 600 different encounters.  One Montana family writes:

“We rely heavily on the Parent Partner Program. They have helped us with so many things like the in-home medical equipment our son needs for his heart. Educational resources for us that have helped us keep our son at home with his family and of course the never-ending records that facilitate his coordination of care. They've been there to help with the overwhelming details of almost all of our son's heart surgeries and then again when we were faced with the brain damage that can happen to children born with these kinds of medical problems. We are eternally grateful for this program; it's helped us keep our son alive and well.”

Parent Partners participated in bi-annual, in-person training, and monthly individual and group calls with the Project Director, Brad Thompson, LPC-S. A unique cornerstone of this program model, supported by research, is the consistent personal support offered to the PPs, as they work to support other families while continuing to navigate their own child(ren)’s special healthcare needs.  Parent Partners received continuing education (CE) on the key elements of peer support.  Those include supporting improved outcomes, fostering resilience, assisting families in creating sustainable change, healthy advocacy, and encouraging team building, among others. 

For both CE events, the key elements of peer support and guest presentations received favorable feedback from attendees.  Guest speaker presentations included information on Medicaid waivers, Adverse Child Experiences (ACEs), Home Visiting & Circle of Parents Programs.  Considerable feedback was provided in the evaluations. Results averaged 4.5 out of 5.0 and indicated that improvements made to training were effective and viewed favorably by attendees. Individuals indicated they learned a lot.  For example, stating the training was “always very informative, a good refresher and I learn something new each time.”  Feedback also validated the importance of adding a liaison-only session, and advocated additional time and focused topical discussion be devoted for that purpose.  This suggestion was implemented for the next training and was received favorably. 

MPPP continued its efforts to address and overcome several barriers.  Since starting in Montana, there has been a move in pediatrics from provider-owned clinics to pediatric clinics owned by larger organizations. What was once a flat decision-making structure is now very complex, with people making decisions who are far removed from the provision of care.  The process of recruiting interested pediatric primary care practices to be host locations and receiving organizational approval has grown increasingly complex and requires a much greater investment of time than when the program started.  A process that may have taken from 1 to 2 months to complete in 2016 for example, may now take 12 to 24 months.  MPPP is pursuing highly frequented pediatric therapy clinics, often provider owned, as potential Program host locations.  Therapy clinics provide the possibility of serving families more frequently and deepening supportive relationships. 

The ongoing challenge of provider referrals continued in FFY 19.  This happened in two ways, some providers who refer to the Program don’t refer all CYSHCN and other providers don’t refer at all.  This clearly limits the ability to serve families.  One solution is to expand the virtual component, create awareness of that service, and educate that provider referral is not necessary to access Program services and supports. 

Another identified challenge is PP recruitment and retention. The program continued to strategize on how to staff clinics so they are operating at budgeted capacity. One of the challenges faced was the non-negotiable characteristics of a PP.  Two of these characteristics are being the parent of a child with special needs and engaging in healthy relational collaborative advocacy.  While it is recognized these items limit the pool of potential PP’s, they remain non-negotiable because of being essential to supporting others in a way that is consistent with the MPPP model of peer support.  This is due to their importance as a contribution to healthy outcomes for families.

Finding ways to serve the many predominantly rural and frontier, and often underserved areas of Montana continues to be a priority.  There are a number of strategies MPPP utilized.  MPPP engaged in Program awareness activities, as well as expanding its virtual parent partner presence in Montana to reach families in locations where having a physically present PP is less attainable.  In line with the vision of connecting people with similar struggles and path, the program strives to identify a PP who lives in an underserved community to serve others in similar circumstances.   

Transition Improvement Group (TIG)

CSHS partnered with Billings Clinic and the University of Montana Rural Institute for Inclusive Communities (UMRI), to implement a mixed-methods pilot study. This pilot worked toward integrating the Six Core Elements of Health Care Transition into the clinic workflow at Billings Clinic in pediatric and adult offices.  The vision of this project was to pilot a sustainable evidence-based process and successfully transition young adults into adult healthcare. Throughout this period, the project was in the analysis and design stage.  The anticipated completion date is September 2021.  Once the pilot is complete, the TIG will work to publish the findings and lessons learned, and work with the Billings Clinic executive staff to expand this initiative across the health system.

The Transition Improvement Group (TIG) was comprised of: an adult and pediatric provider; adult and pediatric care managers; leadership executives; quality improvement specialists; nurse informaticists; social workers; and, policy development experts; all of whom work for Billings Clinic.  The team is led by the CSHS nurse program manager and the project coordinator for the UMRI. The group had 13 conference calls and 2 in-person meetings.  The leaders participated in monthly technical assistance calls from The National Alliance to Advance Adolescent Health/Got Transition with Dr. Patience White and Peggy McManus.  These calls supported the group’s work in implementing the Six Core Elements of Health Care Transition.  Dr. White and Ms. McManus provided up-to-date resources and group feedback on Quality Improvement efforts.

Montana Medical Home Portal -

CSHS continued to contract for a Montana specific services directory on the Montana Medical Home Portal (MMHP) at https://mt.medicalhomeportal.org/. The MMHP is a website developed by the University of Utah. It is an easy to navigate, one-stop-shop which provides diagnosis information, treatment options and state and local resources to families, providers and agencies. The MHP includes vetted, up-to-date clinical information, materials on accessing care, and a statewide services directory specific to Montana.

CSHS staff added 930 new providers to the services directory during this reporting period. The Montana services directory section was visited over 8,500 times with over 18,000 separate page views. CSHS staff also reviewed and updated over 1,000 services in the directory.

CSHS Financial Assistance -

CSHS provided direct financial assistance to qualifying families, to cover out-of-pocket expenses for medical and enabling services.  Each child can receive up to $2000 per federal fiscal year.  This funding can go towards, but is not limited to, enabling services such as care coordination, supplemental therapy sessions, assistive technology and durable medical equipment. During FFY 2019 CSHS amended the financial assistance application to a shortened version for child protection workers, in order to get services to the children on their caseload quickly. The expedited process has helped foster care families receive services faster than they would have in the past.

CSHS helped over 21 needy families with the approval of $20,000 in funds to provide services. Staff promoted the program though education and outreach at different events such as Montana AAP Chapter Conference, Montana Public Health Association, Rocky Mountain Childbirth Conference, and the Great Beginnings Great Families conference sponsored by DPHHS.

Circle of Parents -

CSHS continued to partner with Butte 4-C’s to establish and facilitate Circle of Parents (COP) groups in Montana. COP is an evidence-based parent led support group with the goal of reducing child neglect and maltreatment. During this reporting period COP trainers conducted four trainings for 23 new facilitator/parent leaders and 5 childcare providers. Over 52 parents/caregivers attended meetings in Billings, Butte, Polson, Helena and Missoula.  Surveys were distributed to each member attending a training.  Evaluations showed an overwhelming positive experience:

• “Learned how to reinforce boundaries and how to become non-judgmental”
• “Thanks, it was fun, educational, and we were well fed.”
• “I loved meeting everyone and sharing our experiences.”
• “I enjoyed being here, listening to others and engaging in conversations about how we can support families in our community.”
• “This was a very informative training and trainers are so knowledgeable and positive.”