By The AMCHP Child and Adolescent Health Team
(Treeby Brown, Cori Floyd, Sara Beth McLellan, Kate Taft, Iliana White, and Elliane Yashar)
The AMCHP child and adolescent health (CAH) team works on projects around three main areas: adolescent health, child health (including newborn and developmental screening), and CYSHCN (including children and youth with ASD/DD). The primary funders of this work are the MCHB (adolescent health, SPHARC), CDC-National Center on Birth Defects and Developmental Disabilities (NCBDDD), and the Lucile Packard Foundation for Children's Health (CYSHCN—Leadership Institute, and Consensus Standards). 2015 was an outstanding year for the team as we welcomed four new staff members, developed products and enhanced websites, presented at numerous conferences and convened a number of learning collaboratives, all while addressing existing and emerging needs of members.
Year in Review
2015 marked the launch of the Adolescent and Youth Adult Health Collaboration Innovation and Improvement Network (CoIIN), which is supported through AMCHP's role as a partner in the Adolescent and Youth Adult Health (AYAH) National Resource Center. After a competitive selection process in the spring, five teams from Iowa, Mississippi, New Mexico, Texas and Vermont were selected and attended a launch summit in September –with a common focus on increasing access to preventive services, ensuring AYA-appropriate service delivery, and high-quality clinical practice for these distinct populations. AMCHP, in partnership with the University of California at San Francisco, University of Vermont, and University of Minnesota, continue to work closely with states to refine action plans and address measurement and quality.
In addition, AMCHP has worked with the AYAH national resource center partners and CoIIN participants to develop and help staff the national strategy teams which will drive common aims to 1) Improve access & uptake of preventive services; 2) Improve the quality of preventive services and 3) Improve state/systems-level policies & practices to assure access to high-quality preventive services.
Looking ahead for 2016: In 2016, AMCHP will continue to collaborate with the CoIIN participants, as well as support the launch of a second cohort of CoIIN states. As we plan to spread the lessons learned through the CoIIN, we are also committed to assisting those jurisdictions that chose NPM #10, and/or developing a SPM related to the adolescent well-visit, through a new virtual Community of Practice, and a compendium of enhanced resources and tools on our website.
In 2015, AMCHP started new initiatives in newborn screening and continued work in early childhood. For newborn screening, AMCHP received two sub-awards, one is to partner with APHL on NewSTEPs 360 and their efforts to help states improve systems related to timeliness in newborn screening. In particular, AMCHP will help promote timeliness activities and resources, and assist with engagement of Title V leaders.
Through a second project, AMCHP is partnering with CDC, APHL and HRSA to bring together key stakeholders and seek input to update the Newborn Screening Contingency Plan (CONPLAN), with a focus on addressing gaps in laboratory and clinical follow-up. AMCHP has convened an Advisory Committee to help guide the updates and contribute content, and released a public comment survey to solicit broad input to help inform updates to the CONPLAN.
AMCHP continues its work to promote the importance of early childhood through support from the Doris Duke Charitable Foundation (DDCF). AMCHP and partners from CDC's Division of Violence Prevention, NACCHO, and the Healthy Heartlands Collaborative to continue efforts to disseminate and promote the "Raising of America: Early Childhood and the Future of Our Nation." Last fall, AMCHP mailed a copy of the full Raising of America documentary to each Title V director, along with a tip sheet for Title V programs on how to use the documentary to promote dialogue on these issues. AMCHP also created an infographic on "Why Early Childhood Matters" based on messaging from the Raising of America campaign. Electronic copies of the Title V tip sheet, templates, as well as state examples, are available on AMCHP's website: www.amchp.org/EarlyIntervention.
Looking ahead to 2016: For newborn screening, AMCHP will convene an in-person meeting of the advisory committee in late February addressing the Newborn Screening Contingency Plan (CONPLAN), with a focus on addressing gaps in laboratory and clinical follow-up. For early childhood, upcoming activities include working with partners on a national webinar to highlight how states and communities have used the Raising of America to improve conditions for children and their families and highlight success stories.
Autism and Developmental Screening: In 2015, AMCHP's State Public Health Autism Resource Center (SPHARC) developed a number of well-received resources to help Title V programs that select the developmental screening performance measure (NPM#6) think through action plans, potential strategies and strategy measures. These resources include:
- Resources for Title V Action Planning: Developmental Screening Strategies and Measures: sample state strategies, strategy measures and data sources/resources to improve developmental screening that states could use to help inform their action plans
- A Case Example on using the tools and resources to develop an action plan
- National Landscape document on federal and national programs that have a specific objective/measure around developmental screening, including a State/Jurisdiction Matrix of which states have/had certain grant or technical assistance programs related to developmental and autism screening.
In addition, SPHARC partnered with Massachusetts to host a peer to peer exchange program on "Considering Culture in Autism Screening and Systems of Care, and partnered with seven Northeast states, AUCD, CDC and HRSA on a Northeast Regional Developmental Screening, Referral and Response Conference.
In addition, AMCHP continues to support the 2014-2016 Learn the Signs. Act Early. (LTSAE) State Systems Grantees (MN, MT, OK, NJ, NM, NC and WI) through technical assistance, facilitation of connections and sharing of resources.
Looking ahead to 2016: AMCHP's SPHARC will continue to build on the developmental screening work and coordinate with partners to support states that selected the national performance measure (NPM#6) and other state programs looking to improve or develop screening and early childhood service systems. SPHARC will continue to support the state autism grantees through technical assistance, mentorship visits, and peer sharing, including a Peer-to-Peer exchange on diagnosis. There will be exciting updates to the SPHARC website in 2016 that will make information on the grantees' work and resources easier to access and more interactive. Stay tuned to SPHARC!
In addition, AMCHP received supplemental funding available from CDC through our subcontract with AUCD to support additional LTSAE state systems grantees in FY 2016. The RFA for the 2016-18 grants focuses on increasing parent-engaged developmental monitoring by promoting the adoption and integration of LTSAE materials and training resources into programs and statewide systems that serve young children and their families. All U.S. states and jurisdictions are eligible to apply, and AMCHP expects to award up to 12 grants. The deadline to submit an application is February 29, 2016. More information is available at on AMCHP's website.
AMCHP addresses leadership and capacity for systems of care for children and youth with special health care needs through two major projects, the Leadership Institute for CYSHCN Directors (LICD) and the National Consensus Framework for Improving Quality Systems of Care for CYSHCN.
In 2015, AMCHP supported state CYSHCN directors through an in-person meeting of the LICD and hosted numerous webinars primarily focused on addressing performance measures in the block grant transformation. The CYSHCN listserv, supported by the LICD, continued to serve as an active, real-time platform for state CYSHCN Directors to gather information and learn from peers. Recently, conversations on the listserv have ranged from state use of various technology, addressing national performance measures, to enhancing CYSHCN program capacity to capture hearing screening data to state funding for Sickle Cell disease programs. In mid-December, the CYSHCN team disseminated to all LICD members a National CYSHCN Profile of CYSHCN State Programs. This assessment will capture data from CYSHCN Programs about family engagement, life course theory, medical home and transition initiatives, quality improvement, and financing of CYSHCN programs in their state.
In 2015, AMCHP wrapped up work on Phase II of the project, National Consensus Framework for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs, supported by the Lucile Packard Foundation for Children's Health and received funding for a Phase III. To date, thirty-one states reported use of the National Standards to build partnerships with stakeholders, assist with strategic planning, including the development of five-year state action plans, improve the quality of care across systems serving CYSHCN, and promote policy and programmatic change. Results from the Action Learning Collaborative states and other were presented during a skills building workshop at the 2015 Association of University Centers on Disabilities Conference (AUCD) in Washington, DC. Additionally, these results and newly developed Implementation Guides will be presented during a skills building session at the 2016 AMCHP Conference in collaboration with several state ALC representatives.
Looking ahead to 2016: AMCHP will continue to support the LICD through the listserv, and through both virtual and in-person opportunities, including discussion and dissemination of the results from the National Profile of CYSHCN State Programs. As part of Phase III of the Standards project, AMCHP, in partnership with NASHP, continues to focus on increased outreach to Medicaid and health plans, provision of intensive technical assistance to select states, and continued effort to condense/streamline the standards for ease of use.