Children with Special Health Care Needs

Annual Report Year

Priority: Enhancing use of medical home and transitional services for CSHCN.

According to the 2017-2018 National Survey of Children’s Health, 19% of District families reported that their child has a special health care need. Families with CSHCN also report numerous barriers in accessing health care services. Specific barriers include:1) difficulty with systems of care within the primary care practice (such as insurance referrals, urgent care access & communication with the child’s specific primary care provider); 2) inability to access specialty care (including scheduling appointments); 3) communication with providers during and between visits to ensure that concerns are addressed; 4) lack of linkage to community resources (including transportation, respite care, educational & therapeutic resources); 5) financial assistance with equipment, medications or other needs not covered by insurance; 6) barriers for families whose primary language is not English or who have low levels of literacy; and 7) lack of transition planning. Title V continued to fund the Children's National Health System (Children’s National) Parent Navigator Program in FY19. Navigators, who are parents of children with special health care needs (CSHCN), empower parents to actively take part in the medical decision making process by providing peer-to-peer support and coaching among other instrumental services. Title V also continued to fund Title V The National Alliance to Advance Adolescent Health (NA) in FY19 to expand pediatric-to-adult health care transition (HCT) services that support youth with and without special health care needs in the District of Columbia utilizing the evidence-informed Six Core Elements (6CE) that define the basic components of HCT. NA replicated School Based Health Center (SBHC) HCT pilot efforts previously undertaken, in three additional SBHCs operated by Children’s National Medical Center (at Ballou, Coolidge, and Dunbar High Schools).

Goal 1: Increase the use of transition planning for adolescents with and without special health care needs.

Title V continued to fund the Children's National Health System (Children’s National) Parent Navigator Program in FY19. The Program employs six Navigators who are parents of children with special health care needs (CSHCN), including bilingual/Spanish speakers, to work with CSHCN families to address barriers around access to health care, communication, transition from pediatric to adult care and finding supportive community resources. Navigators empower parents to actively take part in the medical decision making process by providing peer-to-peer support, coaching, and assistance with appointment scheduling to families in hospital and community-based primary care centers. Primary care providers, care teams, and families are engaged to ensure that medical and community resource referrals are completed.

Navigation Services

In FY19, Navigators were able to track issues and resolutions for families in the electronic medical record (EMR) system in a more organized manner. The process allowed for structured documentation of navigation needs and educational assessments. Also, it facilitated their ability to communicate more effectively with the primary care providers in supporting their family’s needs. Although integration into the electronic medical record system has proven to be very efficient, the Parent Navigator Program has exhibited some challenges in formulating work processes through this system. They developed a risk scoring process, to be automatically assessed for each question on the educational assessment upon completion, which would initiate an action plan for high risk parents. Due to its inability to formulate correctly, the program has gone back to reassess the process.

Toward the end of the fiscal year, Navigators were introduced to Tele-Medicine and participated in trial visits in conjunction with the pediatrician and the family. Navigators successfully provided peer-to-peer support/navigational services to 445 families, resolved a total of 793 issues, and received over 20% (91) of parent satisfaction surveys. Responses from surveys demonstrated that on average 77% of families “were very satisfied with services they received through the program”, and 84% reported “feeling more comfortable working with their child’s doctor after receiving navigation services.”

A parent knowledge-based educational assessment was developed and administered to parents/caregivers of CSHCN between the ages of 0-12 to explore deficits and to increase parent awareness regarding their child’s special education needs and rights. This assessment helped navigators determine the parent/caregiver’s awareness level and identify how to support them regarding their child’s educational needs. In FY19, Navigators reached a total of 102 families, surpassing their goal of 75 families.

The Parent Navigator program was faced with some challenges. For the first half of the year, the program was challenged with hiring a sixth navigator. The team worked closely with the HR department to solicit eligible candidates and successfully hired a third bilingual Spanish speaking Navigator in June 2019.

Transition Services

A large component of the program has been focusing on medical transition planning activities, helping families familiarize themselves with the process of their child  transitioning from pediatric to adult health care services. Navigators engaged in a variety of activities to achieve this goal by: administering a transition readiness assessment taken from tools and strategies of Got Transition; hosting transition training sessions; and participating in community events to disseminate transition planning information, such as, the annual Future of Pediatrics conference sponsored by Children’s National where they reached over 100 pediatricians in the DC Metropolitan area. Navigators were instrumental in administering 108 transition readiness assessments to teens between the ages of 14-21 with special health care needs, such as, complex medical needs, developmental delays, and autism.

In addition to the daily activities of the navigators, throughout the fiscal year, navigators engaged in the community through a multitude of activities:

1. Presented in the Children’s Hospital Association webinar titled “Family Partners for Better Care.”
2. Presented at DC Public School Nurses Retreat.
3. Hosted the 5th Annual Childhood Mental Health Awareness Fair, with a theme of “Suicide Prevention: Strategies that Work.”
4. Participated in John Hopkins Transition Symposium.
5. Attended the District of Columbia CSHCN Advisory Board Meetings.
6. Initiated communication with AmeriHealth Caritas District of Columbia to partner in facilitating transition planning workshops.
7. Facilitated a Spanish speaking transition workshop, at Children’s National.
8. Initiated a pilot with the Genetics and Metabolism clinic at Children’s National providing parent navigation services to families seen in outpatient sub-specialty care clinics.
9. Participated in a Parent Mentor Learning Collaborative.

In FY19, the program completed at least one transition workshop, but participated in several events which discussed transition and disseminated information. While Navigators have been successful in fulfilling the first four strategies identified in Got Transition, the team continues to work on identifying ways to document the actual transfer of care and the final step of transfer completion.

Goal 2: Increase number of adolescents with and without special health care needs receiving recommended preventive health services.

Title V continued funding The National Alliance to Advance Adolescent Health (NA) in FY19 to expand pediatric-to-adult health care transition (HCT) services that support youth with and without special health care needs in the District of Columbia. NA continued to expand the use of the evidence-informed Six Core Elements (6CE) that define the basic components of HCT for pediatric and adult medical and behavioral providers, as recommended by the 2018 American Academy of Pediatrics (AAP), American Academy of Family Physicians (AAFP), American College of Physicians (ACP) Clinical Report on HCT. The 6CE address all three phases of transition – preparation, transfer, and integration into adult health care – and include a set of sample tools that can be customized for pediatric and adult practices, including school-based health centers (SBHCs). 

In FY19, NA replicated the SBHC HCT pilot efforts previously undertaken with MedStar Georgetown’s SBHCs (at Anacostia and Roosevelt High Schools) into three SBHCs operated by Children’s National Medical Center (at Ballou, Coolidge, and Dunbar High Schools). For each of these 3 SBHCs, NA obtained baseline information about the extent of implementation of HCT services using Got Transition’s Current Assessment of HCT Activities for SBHCs. Throughout the year, the team met regularly with the CNMC SBHCs to customize the HCT tools and plan clinic processes using quality improvement (QI) methods to introduce HCT as part of routine preventive care. The HCT tools included a clinic welcome and care policy, an HCT readiness assessment, and a resource for seniors on finding local adult providers. Also, with the two MedStar Georgetown SBHCs NA originally worked with, they conducted a post assessment about their implementation of HCT services and a qualitative interview with clinicians on their experience piloting and sustaining HCT in routine preventive care. Finally, the NA completed a research study with 25 consented students in the two MedStar SBHCs who were at least 18 years of age and analyzed the results of their completed HCT readiness assessments. The MedStar SBHC pilot project and research results were presented in a manuscript that was drafted for submission to the Journal of School Nursing. Presentations/posters on this work were presented at AMCHP and Baylor, leading to other states replicating DC’s HCT SBHC tools and processes (e.g., Connecticut, Illinois, and Michigan). 

During this fiscal year, NA continued its HCT QI work with a DC federally qualified health center (Mary’s Center) with two pilot projects. The pediatric and adult medical pilot and the school mental health pilot selected and customized 6CE tools, with the coaching assistance of NA. For the medical pilot on the pediatric side, HCT tools included a transition policy, registry, and transition readiness assessment; on the adult side, the tools included a welcome and care policy, a resource with frequently asked questions, a list of available adult doctors with pictures and fun facts, and a consumer feedback survey given after the initial adult visit. Mary’s Center school mental health pilot, which was initially implemented in 3 schools and has since expanded to 7, customized two transition tools: 1) a transition readiness assessment focusing on mental health self-care skills and 2) a discharge wellness plan, given to senior students. The results of the school-based mental health efforts were presented at the Health Care Transition Research Consortium Conference in Houston, Texas.

With the release of the updated AAP/AAFP/ACP Clinical Report on HCT in late 2018, NA partnered with a DC managed care plan, Health Services for Children with Special Needs, to update an old HCT CME by creating a new, free one-hour CME webcast. The webcast included a presentation on the new Clinical Report and use of the 6CE. NA also created a new post-CME quiz, which included questions about the likelihood of implementing some of the transition learnings from the webcast. In addition, as part of NA’s ongoing work to educate health care professionals in training programs in DC, NA developed a slide set for ready use by DC area medical, nursing, social work, and public health training programs. However, full curricula at nursing and social work schools made it difficult to incorporate the HCT presentation. Further development of educational materials in conjunction with nursing and social work clinicians in the future would augment dissemination.

In FY19, NA also continued its interagency HCT work by participating in monthly meetings with DC’s Office of State Superintendent of Education’s (OSSE’s) Community of Practice’s on Secondary Transition and provided two presentations on health care transition. With encouragement and feedback from local special educators, families, and education experts, NA customized an HCT readiness assessment for use by students in special education. NA developed a corresponding set of sample goals for the IEP transition plan, based on the HCT readiness assessment, that could be used to assist students with specific self-care skill gaps. NA presented this work at the Health Care Transition Research Consortium Conference in Houston, Texas, at OSSE’s professional development session, and shared this with other state Title V programs in Florida, Minnesota, Texas, Wisconsin, and with the federal MCHB.

Finally during the fiscal year, NA produced a report, “Medicaid Opportunities for Supporting Innovations in Transition from Pediatric to Adult Care for DC Youth and Young Adults: A Discussion Piece.”  This report was presented to senior officials at the DC Department of Health Care Finance. It described six policy opportunities for sustaining HCT improvements related to: 1) a multi-sector population health initiative, 2) managed care contract language, 3) recognition of HCT-related codes, 4) Early and Periodic Screening, Diagnostic and Treatment (EPSDT), 5) value-based payment, and 6) health home programs. NA reached approximately 432 health professionals, agency officials, youth and families through their various HCT QI, education and training, interagency, and policy/systems-building efforts.

Title V also continued to engage with the Children with Special Healthcare Needs Advisory Board to serve as a conduit between DC Health and families of children with special health care needs. During FY19, Title V staff attended CSHCN meetings to learn more about challenges CSHCN families face in the District, as well as provide updates about DC Title V for the Advisory Board.