Reflections from the Child and Adolescent Health Team

By the AMCHP CAH Team (Treeby Brown, Kate Taft, Maritza Valenzuela, Veronica Helms and Alma Reyes)

The AMCHP child and adolescent health (CAH) team works on projects around three main areas: adolescent health, child health, and CYSHCN (including children and youth with ASD/DD). The primary funders of this work are the MCHB (adolescent health, CYSHCN, 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). 2013 marked the first full year of operation for the AMCHP CAH team. Through team building and program coordination as well as new funding opportunities, program staff are more seamlessly integrating the needs of CYSHCN into their work, sharing best practices in analysis and assessment and developing more coordinated approaches to peer learning, technical assistance and leadership development.

Year in Review

Adolescent Health
2013 marked an exciting year for AMCHP in building systems of care for adolescents and their families through peer learning, leadership training and policy analysis. In February, AMCHP brought more than 20 adolescent health coordinators to the 2013 AMCHP Conference and hosted a meeting of the National Network of State Adolescent Health Coordinators along with two skills-building sessions focused on the potential impact of health reform on adolescents and young adults and connecting members to national partner organizations and resources. In addition to workshops in the adolescent health track, other events highlighted practical tools for youth engagement and building collaborations with education agency partners.

Comprehensive Systems for Adolescent Health Collaboration and Innovation: In partnership with the State Adolescent Health Resource Center (SAHRC), AMCHP staff initiated the Comprehensive Adolescent Health Systems Collaboration and Innovation Network (CAHS-CoIN) in June 2013, bringing together six states and one territory to begin exploring the what and how of building comprehensive systems that support adolescent health in the states. Following the kickoff meeting, in which participants also received valuable training in ToP facilitation methods, participants continued to share resources, experiences, ideas, and strategies via webinars and conference calls. States and territories participating in the CAHS-CoIN are Puerto Rico, Colorado, Iowa, Minnesota, Ohio, New Jersey, and Florida. The CAHS-CoIN cohort held its second gathering at the 2014 AMCHP Conference, and through July 2014, AMCHP will continue to support the states in identifying and implementing ways to strengthen statewide systems that support adolescent health.

The CAH health team revamped their website to add new sections and resources, including several new pages on adolescent health projects, partners, and resources.

In September, staff began work on an environmental scan of adolescent health activities under Title V, a team effort that included AMCHP’s senior epidemiologist, and involved collecting all program activities related to adolescents, teens, and/or youth as reported in TVIS. Initial findings were presented in a skills-building session at the AMCHP Annual Conference in January 2014.

In the spring of 2013, AMCHP published a Pulse newsletter focused on adolescent health (April-May issue) highlighting such issues as including dads in teen pregnancy and parenting support initiatives, activities of federal partners at the Office of Adolescent Health, collaborations between health and education agencies to advance sexual health education in the states, systems change and healthy youth development, Title X and teens, and ACA provisions relevant to adolescents and young adults.

New Partnerships between Adolescent Health and CYSHCN on Transition: AMCHP adolescent health and CYSHCN staff began a partnership with staff at the new Center for Health Care Transition Improvement at the National Alliance to Advance Adolescent Health to discuss collaborating on the dissemination of the newly updated Six Core Elements of Health Care Transition, facilitate use of the Core Elements by Title V staff, support partnerships between adolescent health coordinators and Title V CYSHCN directors, and explore ways to promote youth and family engagement in quality improvement efforts.

Child Health
In 2013, AMCHP tackled one of the top child health issues – obesity and overweight. As part of our partnership in the National Initiative for Children’s Healthcare Quality (NICHQ)-led Collaborate for Healthy Weight, AMCHP released an issue brief that highlighted Title V efforts around promoting healthy weight in maternal and child health populations, and also highlighted these activities on a national webinar. AMCHP continued efforts to promote healthy weight resources by organizing a workshop session at the 2014 AMCHP conference that featured examples from state programs. AMCHP also continued to make connections with our partners in oral health, injury prevention, early childhood development, and others to increase collaborations to improve child health outcomes. As one example, AMCHP hosted a national roundtable presentation at the National Oral Health Conference in April.

n 2013, AMCHP significantly expanded its capacity to build quality, comprehensive systems of care for CYSHCN through seven major projects. Three projects focused on developing systems of care for children and youth with autism spectrum disorders and other developmental disabilities (ASD/DD): the State Public Health Autism Resource Center (SPHARC), the Learn the Signs Act Early Systems Grants, and the Learn the Signs Act Early Ambassador Grants. Four AMCHP projects focused more broadly on CYSHCN, with AMCHP increasing its national presence as a leader in CYSHCN systems building. These projects included: the Leadership Institute for CYSHCN Directors (LICD) program, the National Consensus Framework for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs, the Action Learning Collaborative for State Title V CYSHCN Directors and Teams: Taking a Leadership Role in Transitioning to Medicaid Managed Care, and a partnership project with the National Center for Ease of Use of Community-Based Services to examine ease of use for Hispanic CYSHCN and their families.

Over the past year, AMCHP provided direct technical assistance to nearly all 50 states. AMCHP CYSHCN program work focused on four primary areas: 1) peer learning and systems development for state leaders addressing ASD/DDs; 2) support for Title V CYSHCN directors; 3) systems development, and 4) partnerships.

Building Systems of Care for CYSHCN with Autism Spectrum Disorder and other Developmental Disabilities through the SPHARC and Learn the Signs. Act Early. For SPHARC, 2013 was all about data! Over the year, SPHARC hosted several technical assistance calls and webinars designed to engage ASD/DD grantees in a collaborative learning exploration session examining data and its use in grantee programs, as well as the type of data states collect, various methodologies of collection and use of practice level data from state programs. In August, SPHARC and Association of University Centers on Disabilities (AUCD) ITAC hosted a Peer-to-Peer Exchange on Direction Actions Through Activities (D.A.T.A). this was the first time a peer-to-peer was hosted in partnership with ITAC and brought together ASD/DD grantees and their state or neighboring LEND program to share and learn how to identify, collect and evaluate data to assess the impact of their pilots, programs and projects on systems of care for children with ASD/DD. Hosted by Connecticut and Maine, nine states (CO, CT, GA, ME, MD, OH, TN, UT & VT) participated in the exchange – the largest number yet! In the fall, SPHARC welcomed the new ASD/ DD planning and implementation grantees through an orientation to familiarize them with SPHARC resources and assess specific needs in order to design upcoming activities to meet those needs. To further facilitate sharing of effective practices, the redesigned SPHARC website has new features, including state profiles so that grantees can quickly learn what others are doing and connect over common topics and challenges. At the 2014 Annual Conference, SPHARC hosted a grantee meeting and workshop on building comprehensive and culturally competent systems of care for children and families with ASD/DD.

For systems grants, AMCHP, in conjunction AUCD, NCBDDD, and MCHB, awarded a third round of Act Early State Systems Grants to support the collaboration of Act Early teams. Ten states, including five states who have never received any type of HRSA or CDC autism or Act Early funding, received $15,000 grants for a 12-month period with a focus on partnerships with early childhood programs. This February, a new round of systems grants will be awarded to seven states for an expanded two-year grant of $10,000 per year ($20,000 total).

In addition to the systems grants, AMCHP worked with CDC and the MCHB on the Act Early Ambassador grants to work with the CDC ‘Learn the Signs. Act Early.’ program. AMCHP offered ongoing technical assistance via a variety of methods including pulling together bi-monthly webinars covering topics such as the latest in developmental behavioral screening to collective impact. The topic of collective impact peaked such interest that AMCHP created a participant driven learning community to support states who are interested in or are currently working on implementing collective impact in their states. As AMCHP transitions the grant to AUCD we will continue to provide support to the Act Early Ambassador work.

AMCHP also provided resources on other birth defects and developmental disabilities, including the emerging issue of critical congenital heart disease (CCHD) screening. In February, AMCHP, in partnership with CDC and HRSA, hosted a meeting that brought together state newborn screening and birth defects program representatives to dialogue about key components for successful collaboration in critical congenital heart disease screening and program implementation. Building off of recommendations from the meeting, AMCHP produced an issue brief that highlights effective practices and policies for states, specifically roles for state newborn screening and birth defects programs, to consider when designing and implementing comprehensive CCHD screening programs. Case studies from Indiana, Michigan, New Jersey and Utah are also included.

Supporting Systems of Care for CYSHCN in the ACA Era Through Leadership Development, Standards and Peer Learning: In 2013, AMCHP received funding from the Lucile Packard Foundation for Children’s Health to provide targeted technical assistance to Title V CYSHCN directors via the LICD program. The goal of the program is to improve the effectiveness of state Title V CYSHCN directors to lead and transform their programs in a time of change by providing targeted, intensive, and ongoing training and promoting a more comprehensive picture of CYSHCN populations in the context of the life course approach, health equity/health disparities, and transitions to adult care. The project launched in July 2013 and since its inception, AMCHP program staff worked diligently to identify CYSHCN directors’ needs. AMCHP released the program application to CYSHCN directors in September 2013 and, to date, more than 40 CYSHCN directors have signed up for the program. Moving into 2014, AMCHP staff will provide targeted programming to meet identified director needs.

As the policy team stated on page 5, the CAH team and the policy team worked to define and reach consensus among key national stakeholders on the desired capacity and performance of systems of care serving CYSHCN. Convening two major work group meetings in June 2013 and November 2013 of more than 40 national and state experts – representing Title V programs, Medicaid and CHIP programs, families, health plans and others – to discussed and finalized the development of comprehensive standards for systems of care serving CYSHCN. To learn more about the CYSHCN system standards project, visit page 5.

Another key project in CYSHCN systems development is the AMCHP Action Learning Collaborative for State Title V CYSHCN Directors and Teams: Taking a Leadership Role in Transitioning to Medicaid Managed Care project. In July 2013, AMCHP received funding from the MCHB to convene an action learning collaborative for states who are transiting CYSHCN into Medicaid managed care models. In 2013, AMCHP conducted research in this area, contacted key partners, and developed a request for applications (RFA) for the ALC. The ALC will be convened in April 2014.

Much of the AMCHP CYSHCN programmatic work is centered on partnership and collaboration with national and state partners. Partners are engaged throughout all CYSHCN program processes, including planning and implementation. Throughout the year, AMCHP worked collaboratively with the National Center for Ease of Use of Community Based Services for CSHCN to develop an ALC that focused on how Title V CYSHCN directors and programs can address the needs of Latino families with children with special health care needs. The next ALC meeting will occur in Spring 2014.

The Year Ahead

Adolescent Health
In 2014, AMCHP will continue to strengthen collaborations with other AMCHP program teams, including webinars planned on the intersections of adolescent and reproductive health with the women’s and infant health team, and outside groups such as the Center for Health Care Transition Improvement at the National Alliance to Advance Adolescent Health Got Transition? Additional analysis will be completed on TVIS data collected for the environmental scan on adolescent health activities, and findings will be presented in a webinar and printed report.

Activities with the CAHS-CoIN will continue through June, building on a successful meeting and skills building session at the 2014 AMCHP Annual Conference. The project will culminate in a spring meeting for states to share updates on their work and contribute to a new AMCHP report on systems building for adolescent health.

Finally, AMCHP will be preparing a new proposal to recompete to continue serving as an Adolescent and Young Adult Health National Resource Center supported by MCHB.

Child Health
Over the next year, AMCHP will continue to strengthen its partnerships and capacity in supporting our members in addressing child health topics. AMCHP will examine emerging issues and top priorities in child health and work with members and partners to identify appropriate resources and technical assistance to help further work in these areas.

In 2014, AMCHP will continue to promote comprehensive, quality systems of care for CYSHCN through ongoing programmatic work. Although funding for the National Consensus Framework for Improving Quality Systems of Care for CYSHCN project expired in 2013, AMCHP graciously received funding from the Lucile Packard Foundation for Children’s Health for Phase II of this CYSHCN systems development project. In 2014, AMCHP will provide targeted technical assistance to state programs seeking to utilize the developed system standards. Additionally, AMCHP looks forward to convening many major meetings in 2014, including the ALC for states transitioning CYSHCN into Medicaid managed care arrangements and the ALC for Hispanic CYSHCN and their families. In the coming year, AMCHP will also continue to provide targeted technical assistance to CYSHCN directors through the LICD program by developing and implementing monthly topical webinars targeted to CYSHCN directors.

In the coming year, AMCHP will continue to expand its work on autism and other developmental disabilities through ongoing technical assistance via a variety of methods, including webinars from AMCHP staff and partners; structured peer support, a forum to network, share ideas and problem-solve with colleagues nationwide working on similar issues; and technical expertise and consultation from leading national experts in the field of ASD/DD. AMCHP will work with AUCD to produce a virtual learning activity for all CAAI grantees in the spring, and will also introduce a new mentoring component to SPHARC, which will allow state grantees to conduct site visits to specifically learn how to replicate an effective practice from another state. In addition to work with its Act Early systems grants, AMCHP will continue to be a resource and partner to the Act Early Ambassador grantees.