Children & Youth with Special Health Care Needs – Application FFY 2021  

 

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

 

Meeting National Standards for Systems of Care for CYSHCN

By offering programs free to all children and their families in Montana, Children’s Special Health Services (CSHS) aims to address NPM 11 by intentionally aligning the work with National Standards for Systems of Care for CYSHCN.

 

The HALI Project: Montana Parent Partner Program

The Montana Parent Partner Program (MPPP) continues to work toward fulfilling its mission of offering every Montana parent and caregiver of a child with special health care needs access to a relationship with a Parent Partner. The purpose is to inspire and encourage hope by providing access to relationships, information, and resources.

 

Parent Partners (PP) continue to expand and deepen their reach within clinics and the predominantly rural communities they serve.  In the first half of FFY 20, PP have served 332 children with special health care needs in 921 different encounters, nearly doubling both the number of relationships and the number of encounters; offering valuable support, encouragement, and hope to families in the first six months, compared to the previous FFY.

One PP Clinic Administrator’s thoughts are reflective of the value and impact experienced in participating Practices.

 

“The Montana Parent Partner Program is an invaluable resource for our practice.  Our parent partners’ own experience having a child with special healthcare needs, combined with their extensive training through the program, allows our clinic to care for patients with complex health issues in a way that we simply would be unable to do otherwise.  Our parent partners offer a helping hand and a compassionate ear beyond the more traditional healthcare services we provide in the exam room because of their personal experiences, unique knowledge, access to resources, and ability to set aside as much time as needed for those patients.  Their involvement in our patient’s care extends and multiplies the work our providers and nurses are already delivering.  The parent partners’ role on our team enables us to offer the truly comprehensive care we strive to give our patients and we couldn’t provide this level of care without them.”

 

In addition to the Program’s efforts to serve families in the existing locations, the Program has focused heavily during FFY 2020 to address barriers identified in FFY 19 and expand its reach and create additional awareness of the Program and its supports.  A quality improvement project was utilized to develop consistent Program branding and materials.  Additional effort was made to reduce barriers to access by developing a HIPAA compliant portal for electronic completion of referral and consent forms as well as expanding the social media presence including a Program website, a Facebook page, and a linkage from the Children’s Special Health Services webpage. 

As part of the Program’s efforts to reach underserved populations in Montana it has participated in various awareness activities such as presentations at the Lifespan Respite Coalition and Pediatric Mental Health Symposium, and through participation in community based Special Needs Resource Fairs and Professional panels.  Additionally, the Program is anticipating the launch of a location in a tribal community.

 

MPPP was evaluated in the fall of 2018 through a collaborative project with the Harvard T.H. Chan School of Public Health and the CDC, MCH Epidemiology Program, and Division of Reproductive Health.  Considerable effort has gone into continuing the work, and progress toward a Program evaluation has been made. It is anticipated to be in place at the beginning of FFY 2021.  This information will be utilized to review the efficacy of the Program as well as inform Program training and support.  It is hoped this will help build a body of evidence supporting the peer support model.

 

Continuing education is routinely evaluated by all attendees, resulting in adaptations to the strategy and methods of content delivery to improve effectiveness.  Evaluations continue to trend favorably among PPs, validating the relevance of the information among its primary recipients.  PPs indicated they had increased learning, felt more confident, and believed their ability to perform their work functions improved. 

 

MPPP values and prioritizes the importance of working as a team.  While evaluation results remain steady among practice liaisons, further study is being done to improve team focused sections. This will strategically further the mission of the MPPP efforts in host site locations, including higher program referral rates among all providers.  PP attendees indicated the training regarding helping families with priorities, dreaming, and team building were helpful. A first-time attendee stated it would have been helpful and increased her level of understanding if there had been an opportunity to observe an experienced PP prior to attending training.  This barrier and suggestion will be further evaluated. 

 

Guest speakers or supplemental trainings are periodically offered covering a variety of topics to enhance a PP’s knowledge and ability to serve families.  Mental health and suicide continue to be a significant concern in Montana, with suicide rates ranking first in the nation for three of the last five years, and in the top five for the past thirty years.  MPPP’s mission, in part, is to inspire and encourage hope through the offer of a relationship with a PP.  Evidence from research done by groups like Peers For Progress continue to show that peer support helps reduce isolation and the often-corresponding harmful effects of depression and anxiety. 

 

The Program was able to conduct the first of two semi-annual staff training events where Parent Partners, in addition to receiving continuing education in the key elements of peer support, also received supplemental training.  MPPP, in collaboration with county health professionals, was able to add an additional day of training where all MPPP staff became Mental Health First-Aid certified (MHFA).  PPs equipped with intimate knowledge of family systems combined with their enhanced ability to recognize crisis, the signs and symptoms of mental health distress, self-harm and suicidal thoughts are well-poised to engage preventative strategies, connect individuals to appropriate and timely interventions.  The training and certification was well received by all, with one PP indicating, “The speaker was great with a lot of information that was very affirming of our work.  I appreciated the practical applications, tools, and examples.  Thanks for a great class!” 

 

Guest presentations included the Executive Director of the Montana Council on Developmental Disabilities (MCDD), who shared the council’s function in advocating for those with developmental disabilities, and being a well-respected provider of non-biased information to state legislators to help inform policy decisions.  The Director also discussed the numerous projects, services, and supports MCDD offers in regions across Montana: to address issues and improve self-determination; improve community inclusion; and,  advance the overall quality of life for people with developmental disabilities.  Representatives from Intermountain, an accredited and licensed mental health center, discussed the different levels of mental health support and treatment available across the state, and explained their attachment-focused, developmental-relational approach to mental health support for children and adults. 

 

A considerable challenge during FFY 20 has been the global COVID-19 pandemic which has required creative problem-solving approaches, since business as usual is no longer an option.  Governor Bullock began issuing mandatory school closures and eventually a mandatory stay-at-home order for all non-essential businesses beginning mid-March 2020 followed by CDC recommended social-distancing protocols.  MPPP, Parent Partners, and Practices were able to identify alternate at-home work plans that allowed PPs to reach out and connect with families and offer encouragement, hope, information and resources, amidst the uncertainly and measures necessary to ensure public health.  This has also led to a decrease in referrals due to declines in non-COVID related clinic visits.  The second training event of FFY 20 was postponed and alternative training methods are presently being explored.

 

MPPP continues its efforts to address and overcome several barriers:

• Increased complications in recruiting practices;
• Parent Partner identification; and,
• Lack of referral by all practice providers.

All of these barriers have been additionally impacted because of COVID-19.

 

Looking forward to FFY 2021 and beyond, the Program cannot predict the long-term impact of COVID-19.  However, these challenges have led to considerable ingenuity.  In addition to expanding and increasing awareness of the virtual PP function, MPPP intends to more fully utilize technology to advantage.  This will increase the ability to connect with and support children and families, as well as the MPPP team. 

 

MPPP will continue efforts to evaluate the Program and increase awareness.   In addition, the Program has two primary goals, both of which are intended to increase the opportunities for families with CYSHCN to connect to a PP.  First, it will seek to place additional PP in existing locations so that those locations work at their capacity.  Second, MPPP will continue to seek expansion into locations in population areas that would support the placement of a PP.

 

MPPP’s third goal is to strategically approach growth by exploring highly-frequented non-traditional locations, addressing a previously identified barrier.  Historically, emphasis has been on pediatric medical practices. However, a very high percentage of CYSHCN and their families spend significantly more time in pediatric therapy clinics.  By having a PP in these locations increases the opportunity to connect with families on a more regular basis. The goal is improving the chance of building and maintaining supportive relationships with parents, which will hopefully extend beyond therapy.  Early experience in the Blue Skies Therapy Clinic in Billings supports that theory.  As part of ongoing efforts to connect families to support, MPPP will continue to explore similar opportunities.

 

It is also the goal of the MPPP to serve those who do not readily have access to services and supports.  Montana is designated a medically underserved area with a large geographic area, primarily rural and frontier.  It is MPPP’s desire to collaborate with Montana’s CSHS and public health professionals to create and implement a strategy to reach families across Montana that are either underserved, economically vulnerable, or geographically isolated and therefore potentially medically vulnerable. 

 

Circle of Parents

 

CSHS continues to partner with Butte4-C’s to establish and facilitate Circle of Parents (COP) groups in Montana.  Each group is founded on eight principles: Trust; reciprocity; leadership and personal accountability; respect; parenting in the present; shared leadership; responsibility; and, non-violence. These groups aim to decrease isolation, prevent child abuse and neglect and strengthen families through free monthly caregiver support groups.

 

Each caregiver leading a group is provided a stipend to coordinate a supportive environment with a free meal and free childcare.  COP facilitators host 7 possible types of groups depending on the needs of their specific communities: Grandparents raising Grandchildren; Families with CYSHCN or Mental Health Concerns; Parents in Recovery; Positive Parenting; and, Love and Laundry.  As of January 2020, there are currently seven facilitation sites providing specific services as indicated:

• Butte
  • Grandparents Raising Grandchildren
  • Families with CYSHCN or mental health concerns.

• Missoula
  • Families with CYSHCN or mental health concerns.
• Mission Valley, which includes these  four rural communities: Polson, Big Arm, St Ignatius and Ronan
  • Families with CYSHCN.
• Great Falls
  • Parents in Recovery
  • Positive Parenting
  • Love and Laundry.
  • Families with CYSHCN
• Havre
  • Families with CYSHCN

 

There are currently two national trainers funded by CSHS, and they have provided seven trainings for new COP groups; fourteen facilitators, twelve childcare providers and six parent leaders were trained this FFY. Approximately 113 parents and caregivers were served, and 79 children participated in the childcare provided.

 

In the FFY 2021, COP hopes to expand to Kalispell, Bozeman, Helena, Lame Deer and other rural and tribal communities. Additionally, COP continues to innovate ways to support communities through a virtual platform.

 

University of Montana Rural Institute (UMRI): Transitioning Youth into Adulthood

 

CSHS continues to partner with UMRI to provide evidence-based transition resources to Montana’s youth and families.  This program works to: maintain and expand the 15-member Consumer Advisory Council (CAC); maintain and disseminate a health care transition (HCT) guide; develop evidence-based/informed HCT training and resource materials; conduct distance learning opportunities; maintain a transition website; and, provide technical assistance to other initiatives related to HCT.

 

The CAC continues to recruit new members and provide member orientation.  This team facilitates ongoing leadership development and mentoring of all members, with a focus on youth engagement and self-advocacy.  The CAC facilitates quarterly meetings and work groups, and they participate in an annual Montana Youth Transition conference (scheduled for a virtual conference in November 2020), in which they can exercise their leadership skills.

 

The CAC continues to review and advertise for the Community Investment Fund (CIF), which is an “annual funding opportunity  for innovative projects that help people with disabilities live, learn, work and play in their communities alongside people without disabilities.” Any Montana organization, agency, non-profit group, or individual with a creative idea, developed by or with people with disabilities to promote community inclusion, is eligible to apply.  In FFY20, the CAC will award a $4000 grant to the successful applicant. In prior reporting periods the amount had been $2000.

 

On an ongoing basis, project staff at UMRI collect and develop new resources and distance learning opportunities for families and medical providers in Montana. Project staff continue to disseminate this information via the Transition and Employment Projects website (http://transition.ruralinstitute.umt.edu/); which is reviewed and updated quarterly.  Additionally, project staff continue to work on the Transition Improvement Group; highlighted in the following “Transition Improvement Group” section of this report.

Transition Improvement Group

 

The Transition Improvement Group (TIG) is 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 UMRI Project Coordinator and the group participates in conference calls and in-person meetings.  The leaders continue to participate in monthly technical assistance calls from The National Alliance to Advance Adolescent Health/Got Transition with Dr. Patience White and Peggy McManus.  During the technical assistance calls, Dr. White and Peggy give updated recommendations, share new resources to the team, and guide the group through questions and challenges.

 

CSHS continues to partner with Billings Clinic and the UMRI to implement a mixed-methods pilot study. The vision of this project is to pilot a sustainable evidence-based initiative and improve the transition process from youth into adult healthcare. This pilot works to integrate the Six Core Elements of Health Care Transition into clinic workflow at Billings Clinic in pediatric and adult primary care offices.  

 

The TIG is currently enrolling patients into this pilot, performing PDSA cycles, and integrating provider and patient feedback to help build a sustainable foundation for the project.  One aim is to highlight a Montana clinic’s experience in integrating the Six Core Elements of Health Care Transition into their clinical workflow, capture those experiences and lessons learned in efforts to expand this initiative, and make an evidence-based transition process available to all adolescents in Montana.

 

A considerable challenge during FFY 20 has been COVID-19 which has required many clinic employees to work from home; interrupting the progress of the pilot.  The TIG will work to integrate telehealth options into the workflow. Additionally, the pilot will end September 2021, after which the TIG will work to publish findings, lessons learned, and expansion plans.

 

Montana Pediatric Medical Passport (MP2)

 

Recently, CSHS partnered with the MP2 initiative to support MP2 participation incentives for families and providers in several health systems across Montana. This is an extension of current MP2 participation to improve care coordination and communication of medical needs for children and youth with special health care needs and medical complexity due to COVID-19.

 

MP2 is a care coordination feature in the Ahana telehealth system, which is an on-demand, cloud-based care planning tool focused on improving communication of medical complexity and delivery of medical care in urgent and emergency situations. The MP2 tool guides the development of a HIPAA compliant, shared care plan that can readily be updated by a primary care provider, specialist and family.  MP2 is designed to gather essential information, utilizing recommended data elements from the American College of Emergency Physicians and American Academy of Pediatrics Emergency Information Form for Children with Special Needs.

For the upcoming application year, CSHS looks forward to a continued partnership with this group in efforts to expand and improve care coordination and telehealth experiences for CYSHCN.

 

Montana Medical Home Portal

 

CSHS continues to contract for a Montana specific services directory on the Montana Medical Home Portal (MMHP) https://mt.medicalhomeportal.org/, which 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.

 

In Montana, the MMHP tool can be utilized as a up-to-date and accurate resource directory for professionals and families.  CSHS ensures that the directory is up-to-date by contracting with the Montana Parent Partner Program (PP) to update and add resource listings specific to their community.  Every resource is reviewed annually by the PP.

 

Historically, CSHS attended and tabled at approximately 10-15 conferences a year to provide education and outreach for all programs, including the MMHP.  CSHS staff would display the MMHP for conference attendees and provide an interactive experience that allowed attendees to demo the website.  Due to COVID-19, CSHS has been tasked with brainstorming innovative ways to virtually educate and provide outreach of this resource.  Once safe, CSHS will continue to participate in outreach efforts at multi-disciplinary conferences to improve use and understanding of the resource. 

 

For the upcoming application year, CSHS will work with the MMHP staff at the University of Utah to integrate patient and provider feedback from online and in-person feedback/satisfaction surveys.  CSHS staff and PP will continue to add resources to the service directory.

 

Financial Assistance Program

 

The CSHS Financial Assistance Program (FAP) is dedicated to serving families in need and focusing on continuous improvements that have their best interests in mind. Qualifying families can apply for the FAP to cover out-of-pocket expenses for medical and enabling services, such as therapeutic services, occupational therapy items, adaptive equipment, and respite care. Qualifying families are eligible to receive up to $2000 per federal fiscal year, per child in need.  More information about this program can be found on the CSHS website at: https://dphhs.mt.gov/publichealth/cshs/FinancialAssistance

 

As of May 2020, CSHS has provided over $54,000 of financial support funding to roughly 130 families in need. Outreach efforts have been increased to better assist families during COVID-19 and staff are working tirelessly to ensure that application processing is happening quickly.

For the upcoming application year, CSHS plans to continue focusing on outreach and education for the FAP across the state via conference tabling, brochures, mailings, the CSHS website, and communication with Montana families and providers.  In response to the COVID-19 impact on all families, CSHS instituted bi-weekly collaboration calls in May for our stakeholders, families, and partners to share resources available across the state that can assist in supporting children and families during COVID-19. These calls occur bi-weekly on Tuesdays at noon, with an average of 30 participants on each call. There have been a variety of targeted presentations that highlight programs such as Parent Partners, AMCHP, the Yellowstone Boys and Girls Ranch, and many others. All resources shared during these calls are then posted on the CSHS website after each call.

 

Additionally, CSHS plans to explore creating a FAP web portal. This would utilize lessons learned by the Primary Care Office’s (PCO) online state loan repayment program’s (SLRP) online portal application, which has significantly reduced the PCO Director’s application processing time.  The goal is to allow the family to apply online and to track their application’s status in real time. The online portal will also support the CSHS goal to improve tracking on types of FAP provided and locations of the families for example.

 

This coming year, CSHS plans to re-evaluate and assess the current outlined financial qualifications to see if increasing the Federal Poverty Line limit will better serve the targeted population and adequately cover families in need of additional financial support.  This evaluation will contribute to creating FAP policies and procedures.   

 

These CSHS Programs, supporting the advancement of medical homes for CYSHCN and their families, align with National Standards for Systems of Care for CYSHCN.  Details are available at: http://www.amchp.org/programsandtopics/CYSHCN/