CSHCN: Annual Report

FY 2019 Annual Report

According to the 2018 National Survey of Children’s Health, 18% or 79,606 of Idaho’s children have a special health care need. According to the 2015 Five-Year Needs Assessment results, children and youth with special health care needs (CSHCN) living in Idaho face major barriers when trying to access pediatric specialists and sub-specialists, primarily due to physician shortages and long-travel distances.

For the CSHCN domain, NPM 11: Medical Home was selected to align with the state’s priority need of improving access to medical specialists for CSHCN. A state performance measure (SPM) was developed to focus on increasing access to medical specialists, and is discussed in detail in the narrative below. To monitor progress towards addressing these priorities, Idaho developed two objectives: 1) By September 2020, fund and support services, programs, and activities focused on improving quality of care for CSHCN, and 2) By September 2020, fund and support services, programs, and activities focused on screening, referral, and access to medical specialists. Measurement of these objectives is based on fiscal support from the Title V MCH Block Grant and an inventory of activities in which the MCH Program is involved. Strategies to address these objectives, NPM, and SPM are discussed below.

Improving Quality of Care & Access to Medical Home

Medical Home Demonstration

According to the 2018 National Survey of Children’s Health, Idaho CSHCN fared better than their peers nationally when it came to receiving care within a medical home (44%% compared with 42.7%, respectively). In Idaho, 17% of children with special health care needs received care in a well-functioning system in comparison to 18% nationally.

To enhance quality of care for CSHCN, the MCH Program leveraged the success of the existing medical home demonstration project for CSHCN. The project was first launched in 2013 in partnership with the Idaho Medicaid’s Children’s Healthcare Improvement Collaborative (CHIC) Project, which was a Children’s Health Insurance Program Reauthorization Act (CHIPRA) quality demonstration grantee. In February 2016 the CHIPRA grant ended, but the demonstration project has continued through coaching and training support at two local public health districts, Eastern Idaho Public Health (EIPH) and Panhandle Health District (PHD). The model involves a shared medical home coordinator (MHC) approach.

The MHC works out of the public health districts to partner with up to three pediatric or primary care clinics in the area to support transformation to a patient-centered medical home. The MHC helps with educating practices on quality improvement strategies, identifying patient populations, health education, community resources, and preventive health. The MHC facilitates positive relationships between families and practices by serving as a member of the practice team. On the patient and family side, the MHC helps guide patients and their families through barriers in the complex healthcare system by connecting them to community resources, referrals, creating care plans, and conducting care conferences to help manage each child’s condition in a patient-centered way.

In July 2017, the MCH Program initiated a new subgrant with Panhandle Health District (PHD) to implement a second medical home demonstration for CSHCN. The scope of work and expectations mirrored those established for the EIPH medical home demonstration. Using an innovative approach, the MCH Program leveraged EIPH’s expertise to train and coach the new staff at PHD. Additional funds were allocated to EIPH to support staff time and travel expenses related to the coaching.

For 2018 and 2019, Title V continued sub-granting with EIPH and PHD to support the medical home demonstration project. The clinics identify their special needs patients or areas for improvement using patient registries and implement quality improvement approaches with the help of the MHC to enhance their care quality. Despite experiencing some turnover in the MHC position at PHD, the district has continued to work with at least two clinics, and has developed a promotional brochure on the medical home demonstration model to be utilized for clinic recruitment. EIPH has expanded their scope beyond their two clinics to also work with a pediatric urgent care provider who is passionate about their role in a medical neighborhood and connecting patients with primary care. The MHC has assisted the clinic with quality improvement measures and working toward becoming NCQA Patient-Centered Connected Care recognized.

In FY 2019, a total of four primary care clinics were served by the two MHCs, and both health districts introduced adolescent depression screening as one of the assessments for special health care needs. Across the four clinics, the following diagnoses, screenings, and areas for improvement in clinical services were selected:

• Adolescent depression screening
• Autism screening
• Well-child visits
• ADHD
• Lead screening
• Adverse childhood experiences (ACEs) screening
• Oral health

According to the CHIPRA Quality Demonstration Grant Program - Evaluation Highlights (2014), utilizing a care coordinator resulted in increased patient-centered care, improved patient population management, and increased providers and family satisfaction. It’s important to note that Idaho’s medical home demonstration project for CSHCN was part of the CHIPRA evaluation and is referenced in the Evaluation Highlights publication. To measure the success of this strategy, the ESM is the percentage of pediatric patients assessed for having a special health care need or need for clinical services. It's important to remember that districts work with urban and rural providers, and patient panels will vary based on screening or clinical need. From July 2019 through May 2020 a total of 7,490 pediatric patients were seen across the four clinics. From June 2019 to May 2020, 96% (7,190 patients assessed /7,490 total patients) of pediatric patients were assessed for having a special health care need or needing clinical services such as immunizations or well-child care. Of those patients, 468 were assessed by a clinician and given a determination for further care, and 248 received a diagnosis and follow up care coordination.

The robust work of EIPH since 2013 has proven to be successful, and clinics that participated in the project are now conducting coordination efforts with their own staff. The 2021 application year is a natural transition point for the MCH Program to step away from supporting the model in EIPH and focus on expanding efforts in PHD. Up until July 2020, PHD was prepared to continue work with two established clinics and to recruit up to 2 new clinics to participate in the medical home demonstration project. However, due to the progression of the COVID-19 pandemic in that region, PHD decided to terminate their medical home project and permanently reassign the coordinator to pandemic-related duties. The MCH Program does not have the capacity at this time to pursue another partner, nor the expertise to provide training on model implementation. For the 2021 application year, the MCH Program has developed a new priority and strategies that align with the 2020 Needs Assessment.

Children’s Special Health Program

The MCH Program continued to fund and operate the Children’s Special Health Program (CSHP), which is a statewide program for children with significant health problems or chronic illnesses/conditions requiring long-term medical treatment and rehabilitative measures. CSHP’s family-centered, community-based, and culturally sensitive care is provided through private providers and clinics around the state and includes diagnosis, evaluation, and medical rehabilitation services. CSHP provides financial support to residents of Idaho, from birth to eighteen years of age, who are uninsured. The program covers eight major diagnostic categories: Cardiac, Cleft Lip/Palate, Craniofacial, Cystic Fibrosis (no insurance restrictions), Neurologic, Orthopedic, Phenylketonuria (PKU) (no insurance restrictions), and Plastic/Burn. Children must meet the following criteria to be eligible for support from CSHP: Idaho resident, less than 18 years of age, and have no health insurance. The extent of CSHP financial support is determined by a sliding scale based on a family’s annual income and family size, and is subject to annual payment limits per client.

In 2017, the CSHP moved from in-house claims payment to a contract with a third-party claims administrator. In 2018, after outsourcing claims adjudication for almost two years, a comprehensive evaluation was conducted due to a significant decrease in medical claims and a decrease in program enrollment. The findings concluded that several areas impacted enrollment and creased paid claims, such as: 1) delayed medical payments due to no electronic submission option resulting in low provider participation; 2) the time burden of claims re-examination increased due to the contractor’s systems limitations to meet the business needs of the complex payment formulas; 3) limited provider knowledge of CSHP resulting in low enrollment; 4) competing medical financial assistance programs that have a higher reimbursement rate resulting in parents dropping out of the program; and 5) increased number of insured children due to the Affordable Care Act and the addition of procedure codes covered by Medicaid. However, the shift in medical coverage has now caused more financial burden to the families due to higher co-pays, less medical reimbursement rates, and higher family deductibles.

In 2019, the MCH Program determined it would be best for the responsibility of medical claims processing to return to the CSHP program. Since then, CSHP staff have been working diligently with Department IT personnel to ensure the SeaShip database, the system utilized for claims adjudication, is fully functional by November 2020. The program has developed a strategic plan and timeline to transition claims from the vendor back to the program prior to the November 2020 contract expiration date.

In FY 2019, there were approximately 82 pediatric special health care needs patients enrolled in the CSHP across the eight diagnostic categories. The estimated payout of CSHP claims for 2019 was roughly $23,000. Additionally, CSHP pays for medical travel for enrolled children to access medical specialists not offered in the state. Under the PKU Program, CSHP pays for medical formula and food totaling approximately $200,000 per year.

Transition to Adulthood

Another way MCH serves the CSHCN population is through the development and dissemination of transition-to-adulthood kits to help empower youth to take a primary role in their healthcare. Issues like health insurance, finding a doctor who takes care of adults, choosing a work or school setting, transportation, and housing present new and sometimes overwhelming challenges. The transition kits cover these issues in an interactive, step-by-step approach by providing information and guidance about a very important part of that process – gaining healthcare independence. Parents can learn how to support youth in taking charge of their health care, and youth, teens, and young adults can learn the skills that will prepare them for success. Youth with special health care needs may need more time and practice to reach that goal, so early adoption of these transition plans is crucial for success. There are currently three versions of the kit available for different age groups: 12-15 years old, 15-18 years old, and over 18 years old.

In recent years, the MCH Program distributed approximately 230 kits annually, free-of-charge, to any individuals or organizations who requested them. Prior to 2016, distribution of transition kits was approximately 1,000 annually. The decline in distribution of printed transition kits is be due to a change in interest from tangible handbooks to electronic versions. Marketing approaches have also shifted to social media platforms to reach a broader audience of adolescents and families. As a result, more emphasis has been placed on promoting the use of the online digital kits. The kits are available in English and Spanish and are available online at CSHP.dhw.idaho.gov. The online versions can be saved and filled out electronically by CSHCN and their families.

In 2018, the Idaho MCH Program formalized its relationship with the state’s Family to Family Health Information Center, Idaho Parent’s Unlimited (IPUL). The purpose of this new agreement is to enhance CSHP’s capacity to provide technical assistance and systems navigation to families of CSHCN, provide parent and professional trainings and leadership events, and offer consultation to the MCH Program on policy and program development. IPUL has achieved the following deliverables with great success in 2019:

• Served 697 unduplicated families through one-on-one assistance.
• Participated in the 2019 MCH Block Grant Review Meeting and TA Meeting.
• Hosted 51 parent and professional trainings, workshops, and/or informational booths (online and in-person) across the state on topics relevant to families of CSHCN.
• Provided the opportunity to families in rural regions to participate in the development of the Title V Needs Assessment Family Survey, contribute to CSHCN priority setting, and attend the MCH Needs Assessment Prioritization meeting.
• Provided consultation to the Department on programming for CSHCN in Idaho. Consultation included: growing and expanding parents/caregivers of CSHCN through social media, providing guidance in improving relationships with Hispanic/Latino families with CSHCN and the professionals who serve them, providing review and input on educational materials, distribution of surveys through focus groups to gather needs assessments data, providing feedback on program operations, assisting with selection of activities for CSHCN, and participating in the Title V Maternal and Child Health Services Block Grant Application development, review, and in-person prioritization meeting.

Advisory Councils

The Idaho Title V CSHCN Director serves as an active member on the state’s Emergency Medical Services for Children (EMS-C) Advisory Council with the purpose of providing the perspective of EMS needs for CSHCN. The CSHCN Director also maintains membership on the Idaho Council on Developmental Disabilities

Improving Access to Medical Specialists

Specialty Clinics

While the MCH Program acknowledges that linkage to a medical home is critical for receipt of high quality care for CSHCN, the state continues to struggle with lack of access to specialty and sub-specialty care providers, which impacts the quality care for CSHCN. To illuminate this unique need, the state developed a SPM focused on increasing access to medical specialists. To support this state priority and SPM, the MCH team developed the objective of funding and supporting services, programs, and activities focused on screening, referral, and access to medical specialists. Measurement of this objective will be based on fiscal support from the Title V MCH Block Grant and an inventory of activities in which the MCH Program is involved. Strategies to address this objective and SPM are discussed on the following pages.

To address the need for access to medical specialists, the MCH Program funds specialty pediatric clinics for PKU, Cystic Fibrosis, and others throughout the state. Annually, the MCH Program supports weekly pediatric genetic, metabolic, PKU, and cystic fibrosis clinics through contracts with St. Luke’s Children’s Hospital in Boise. The MCH Program funds at least 12 cardiac clinics, at least 4 pacer clinics, at least 4 cranial facial clinics, 4 endocrinology clinics, and 10 rehabilitation specialty clinics through a contract with Eastern Idaho Public Health District. In 2017, the MCH Program transitioned from funding an out-of-state dietitian specializing in PKU to conduct the Idaho clinics to leveraging existing expertise at the in-state children’s hospital. The MCH Program provided additional funding via contract to the children’s hospital to allow their PKU dietitian to travel to the quarterly metabolic clinics in northern and eastern Idaho and assumed the role of coordinating care for all children with PKU living in Idaho. As of July 2018, the PKU dietitian at the children’s hospital resigned from her position, but the hospital has since filled the position who will resume with conducting quarterly clinics at four public health districts with a geneticist and metabolic physician to broaden the reach for rural families and children as well as to serve where there is no specialty medical access. Across all clinics, there were a total of 1,119 pediatric patients seen in 2019.

Newborn Screening Program

The MCH Section houses the state’s Newborn Screening (NBS) Program and provides funding for staffing and administration of the program. The NBS Program contracts with the Oregon State Public Health Laboratory to conduct the processing of the state’s bloodspots which allows the state to screen for 47 different conditions through dried bloodspots. The NBS Program is afforded the opportunity to link newborns who receive a positive screen with medical specialists and subsequent follow-up care. The NBS Program has contracted with local and out-of-state medical specialists to offer diagnosis and treatment when a positive screen occurs to ensure that every positive case receives appropriate follow-up care. Over the past year, the program has been working to bolster operations and improve processes to ensure that the state’s youngest and most vulnerable citizens are screened and receive medical treatment as soon as possible. In 2019, 99.5% (21,661/21,765) of live births occurring in the state had at least one screen completed and a total of 21 conditions were detected and diagnosed through screening.

As previously described in the Infant/Perinatal Health domain section, the MCH Program and NBS Program convened a group of stakeholders to address Critical Congenital Heart Disease (CCHD) screening, including the Idaho Medical Association, the American Academy of Pediatrics, and a pediatric cardiologist. The group assisted with drafting rule changes to existing NBS administrative rules to add CCHD as a required screening. In January 2018, the MCH Section Manager/CSHCN Director presented the proposed rule changes to the germane House and Senate committees during the legislative session. Both the House and Senate approved the rule changes which went into effect on July 1, 2018. Idaho was the second to last state to mandate universal CCHD screening and now screens for 48 conditions. Research has shown state adoption of mandatory CCHD screening was linked with a 33% decline in infant deaths due to CCHD compared with states without mandatory screening. Screening information is collected on the birth certificate as part of the Vital Records system. This information allows the NBS Program to monitor screening compliance, provide training and technical assistance to hospitals and providers, and ensure babies with failed screens received appropriate follow-up care. The first phase of implementation focused on outreach and awareness-building by surveying Idaho’s 30 birthing facilities, connecting with providers, sharing CCHD screening postcards at events and with health community listservs, sending out a press release, and conducting radio interviews. The second phase of implementation included website development, providing web-based and in-service training, training to birth clerks for data reporting, and sending out toolkits and other information to birthing facilities. In FY 2019, the MCH Data Analytics team developed data algorithms and exception reports to support MCH efforts in the interpretation of the CCHD data for quality assurance purposes. These reports help NBS staff identify opportunities for clinical education and technical assistance, standardize the CDC recommended pulse oximetry screening guidelines across the state, and utilize data to inform CCHD needs for medical care follow up and to study CCHD prevalence.

Quality Improvement

In addition to quality improvement coaching and care coordination at no cost, one of the benefits to clinics participating in the medical home demonstration for CSHCN is the ability to identify their unique special needs populations and areas for practice improvement at the clinic level. This allows for tailored quality improvement activities and guidance from the medical home coordinator (MHC). For 2017/2018, Title V identified depression screening among adolescents (aged 12-17) as a common screening and referral practice across the clinics. This was an effort to collect consistent data from clinics and to identify differences or challenges in screening and community connections for adolescent depression based on suburban versus rural clinics or large, multi-provider clinics versus small clinics.

All four clinics (two in eastern Idaho and two in northern Idaho), used a validated tool to screen for depression in adolescents. Screening rates ranged from a low of 85% to a high of 100%. The MHCs provided training to the clinics on using the PHQ-9, a validated tool for screening depression in adolescents and helped to identify process improvements to more consistently disseminate the PHQ-9 to patients. This involved making modifications to the EMR, working with front desk staff to hand out the survey upon patient arrival, or making sure the survey was included in the patient file to discuss with the clinician. All patients who screened positive for depression were engaged in a deeper discussion with the clinician about the results, the clinician assessed if the adolescent was receiving treatment, and referred those needing treatment to a mental health care provider.

Perinatal Learning Collaborative

In 2016, the MCH Program contracted with St. Luke’s Children’s Hospital to host a series of annual learning collaboratives (LCs) focused on pediatric practice improvement and care delivery with a focus on CSHCN. For the 2018 learning collaborative, the MCH Program partnered with St. Luke’s to facilitate a learning collaborative focused on improving developmental screening by encouraging practices to follow Bright Futures/AAP recommendations, use a validated evidence-based screening tool during appointments with families, increase documentation in the electronic medical record (EMR) system, and make referrals and follow-up appointments when appropriate. The developmental screening LC wrapped up in August 2018. There were more than 20 clinics and 64 providers participating. The percentage of patients that received a validated developmental screening at the recommended well-child visits increased from 40% to 100% across all clinics, and those that received a validated autism screening increased from 59.7% to 100%.

Research reveals that adverse childhood experiences (ACEs) increase the long-term risk for reduced well-being, unhealthy behaviors, and chronic diseases and illnesses. Data from the 2018 National Survey of Children’s Health indicates that 33% of children with two or more ACEs had a chronic condition or special health care need compared with 14% of children with no ACEs. Furthermore, quantitative data collected by key informant interviewees identified ACE’s as being a major health concern for CSHCN. Screening the parents and offering education and resources is a primary prevention effort to interrupt the intergenerational transmission of ACEs within families. In April 2019, a new LC kicked-off focused on ACEs screening and resiliency of parents of young children (4 months to 5 years of age). There were more than 90 participants in attendance, including more than 40 providers across more than 20 clinic locations. This was a significantly higher turnout than expected, and more clinics joined the LC following the kick-off event.

The MCH Program leadership has determined that moving forward, the LC model most appropriately aligns with the Cross-Cutting/Systems Building domain. This will allow the focus of future LCs to shift and meet the needs of any population domain and provide the opportunity to address new priority needs as they emerge.