Ease of Use of Services for Latino Families Who Have Children & Youth with Special Health Care

Needs
June 2013 Strategic Planning Project
Introduction In 2012, the Indiana State Department of Health, Childrens Special Health Care Services (ISDH, CSHCS) Division submitted a collaborative proposal to the Association of Maternal and Child Health Programs (AMCHP) to participate in the Ease of Use of Services for Latino Families Who Have Children and Youth With Special Health Care Needs Action Learning Collaborative. Indianas proposal was accepted and the subsequent Indiana Action Learning Collaborative (ALC) had two primary objectives: 1. Create a strategic plan for ease of use of services for Latino families who have children and youth with special health care needs (CYSHCN). 2. Develop an implementation schedule for the developed strategic plan Background Indiana has experienced rapid growth in its Latino population. According to 2010 U.S. Census data, Indiana experienced an 82% increase in its Latino population from 2000-2010. Latinos represented 214,536 residents in 2000 compared to 389,707 in 2010, now comprising 6% of the state. This number has almost quadrupled since 1990 when the Latino population was 98,788 and represented 1.8% of the state. This total may be even higher due to the unknown number of undocumented residents. Along with rapid exponential growth comes an increased barrier to services from lack of insurance and an insufficient capacity of state providers to assist Latino families in need of health and community-based resources. Navigating the current fragmented and complex systems of care can be very challenging for families of children and youth with special health care needs (CYSHCN) and even more challenging for Latino families facing the aforementioned barriers. Many of Indianas parent and family organizations, like About Special Kids and the Family Voices Indiana, have waiting lists for Latino families of CYSHCN due to high numbers of referrals received from organizations with no culturally-diverse personnel to assist them. Indiana Latino families tend to experience longer waiting times in medical care settings due to limited availability of interpreters and the lack of educational materials and forms that are translated into Spanish and other indigenous languages of new Latino immigrants. The Indiana Title V Childrens Special Health Care Services (CSHSC) Divisions mission to improve access to quality, comprehensive, coordinated community-based systems of services for CYSHCN that are family-centered and culturally competent is based on the six national priorities identified by the Maternal and Child Health Bureau (MCHB):

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1. Families of CYSHCN will partner in decision making at all levels and will be satisfied with the services they receive. 2. CYSHCN will receive regular ongoing comprehensive care within a medical home. 3. Families of CYSHCN will have adequate private/public insurance to pay for the services they need. 4. Children will be screened early and continuously for special health care needs. 5. Community-based service systems will be organized in ways that families can use them easily. 6. Youth with special health care needs will receive the services necessary to make appropriate transitions to all aspects of adult life, including adult health care, work, and independence. The 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) shows Indiana has a higher percentage of CYSHCN at 17.0% compared to the National 15.1%. This equates to approximately 270,000 children in Indiana. This approximation has remained consistent with the 2005-2006 NS-CSHCN, allowing us to estimate that Latinos represent 9% of Indianas CYSHCN population. When examining the six core outcomes in the 2009-2010 NSCSHCN, Indianas Latino CYSHCN are second for unachieved outcomes (just below AfricanAmericans) for priorities 1-5 and the highest for priority 6. The Indiana Title V CSHCS Division realizes these statics are problematic. We are committed to the continual use of the MCHBs framework to address gaps for CYSHCN statewide, especially to prevent minority population from falling behind. Setting the Stage To accomplish the proposed goals, a variety of organizations and programs came together to explore and learn about the complex needs of Latino/Hispanic families of children with special health care needs. Participating organizations to date have included state and community provider programs and family-led organization. A complete list is provided at the end of this plan. To learn more about the community a family survey was created by the IN ALC in English and Spanish to better understand the resources and services Latino families with and without CYSHCN use to support their childs needs and how available these resources are in the community. Other than the National Survey of Children with Special Health Care Needs (NSCSHCN) data, there is no data source in the state to collect this type of information. The survey was made available online however to best reach the intended audience, volunteers participated in several events to talk one on one with families to complete the survey. To date the survey was made available at: FIESTA! September 15, 2012 Mexican Independence Day September 15, 2012 Holiday Member Appreciation Day November 17, 2012 Santa Claus Is Coming to Town December 15, 2012
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In an effort to engage the providers, two 3-hour workshops were conducted at the Indiana Institute for Strengthening Families on April 9, 2013. The Institute brings together hundreds of early childhood providers (e.g. Department of Child Services, Healthy Families, First Steps Early Intervention System, home visitors, the Childrens Bureau, etc.) twice a year to learn and participate in a variety of early childhood topics. Another shorter workshop was conducted at the annual Covering Kids and Families School Health Conference on June 11, 2013. These workshops consisted of a brief overview of the IN ACD activities, presentations regarding current Indiana programs to address the needs of Latino/Hispanic families, and opportunity for the audience to share their ideas and suggestions for addressing the complex issues and needs. A review of the data and information gathered from these efforts indicates several starting points for Indiana in improving services to Latino/Hispanic children with special health care needs and their families. Families indicate they primarily get information about resources from their doctor or clinic, and their childs school. Families describe a variety of barriers to accessing services such as not knowing about programs, not understanding the various programs and services, not being able to understand or be understood by program staff and mistrust. A summary of comments and discussion from the workshops presented reveals several pertinent observations. These can be summarized as: Challenges noted are true for ALL families, not just Latino/Hispanic (such as transportation, rude providers, etc.) Time involved in translating is a barrier to get others to buy in Doing things the American way (being able to call the doctor with questions for example not a norm for Latino/Hispanic culture Limited manpower: face to face meetings require more time and follow-up for this population Educating community partners how we can better serve population? Cultural awareness and competence Educating the community stigma, problems that need to be addressed

Framework In their sentinel paper in the winter issue of the Stanford Social Innovation Review entitled Collective Impact, authors John Kania and Mark Kramer offer a paradigm for making lasting, large scale change to address complex problems (add ref). They describe five key conditions that are necessary for substantial change and distinguish collective impact from other collaborations. The conditions include 1) a common agenda; 2) shared measurement systems; 3) mutually reinforcing activities; 4) continuous communication and 5) a backbone organization. Although the paradigm has only recently been described, the ISDH CSHCS Division has long promoted the principles of collective impact by serving as a backbone organization, defining a common agenda, and promoting collaboration and communication among providers and families and across agencies and resources. This framework ideally matches the IN ALC

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Strategic Plan that is integrated into the CSHCS Division mission to address this population and its unique needs.

Strategic Plan 2013-2015

Ease of Use of Services for Latino Families Who Have Children & Youth with Special Health Care Needs

The Strategic Plan developed by the IN ALC is comprised of 5 overall goals divided into three main areas including services, education and capacity building/sustainability. 1. Services 2. Education - Training 3. Education Awareness 4. Capacity Building and Sustainability - Organizational Development and Funding 5. Capacity Building and Sustainability - Advocacy The plan identifies goals, a proposed timeline, task leaders, and action steps. The IN ALC is committed to meet regularly as it works to implement the plan in partnership with various agencies and programs. The IN ALC encourages all interested individuals and organizations to participate in this effort.

Goals, Strategies, and Action Steps

Goal 1: Services - In Indiana, Latinos/Hispanic children with special health care needs and their families access and utilize the health care and other resources available to maximize their potential. Outcome measures statement for Goal 1: Increase in access of programs (i.e., First Steps, Healthy Families, Head Start, etc.), and health care resources (i.e., Medicaid, CSHCS, etc.) for Latino/Hispanic population. Strategy A: Identify organizations and programs that provide screening, assessment, diagnosis, and services, and the barriers as well as access points for Latino/Hispanic children with special health care needs and their families.
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Timing: July 2013 June 2014 Task Leaders: CSHCS Action 1: Define special needs from provider and community perspective. Action 2: Identify cultural/religious issues that affect how special needs is understood and defined Action 3: Identify methods to keep people engaged in the process of screening, assessment, diagnosis and service. Action 4: Identify methods to reach all children/families, especially in rural communities. Strategy B: Develop and disseminate a roadmap to screening, assessment, diagnosis, and services (what happens, how to access and navigate). Timing: July 2013 June 2014 Task Leaders: Jen Akers (Family Voices Indiana) Action 1: Identify access points to system. Action 2: Advocate for Spanish speaking access in existing services (such as 211, Ask a Nurse, Patient Navigation programs, etc.) Action 3: Explore development of an app for smartphones to link people to roadmap. Action 4: Incorporate roadmap into medical home practices. Strategy C: Develop and disseminate a general information brochure about services (make/keep appointments and plan, make changes, etc.). Timing: July 2013 December 2013 Task Leader: CSHCS, Sarah Stelzner, Patrick Wooten Action 1: Identify existing Care Notebook and other translated resources and add information about responsibilities of patients. Action 2: Explore best methods to describe culture of medical services to assist Latino/Hispanic families in accessing resources for their children with special health care needs. Action 3: Consider innovative methods to disseminate information such as brief video/DVD to display in waiting rooms, a graphic representation/pathway, etc.
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Strategy D: Identify and implement strategies for reaching the Hispanic/Latino community. Timing: Ongoing Task Leaders: IN ALC Leadership Committee Action 1: Partner with organizations (such as churches, nail salons, schools, tiendas/supermarkets, etc.) to have community conversations (such as charlas) about children with special health care needs and other topics. Goal 2: Education - In Indiana, Latinos/Hispanics and the community/social service organizations that serve them know about the needs, strengths, resources and services for children and youth with special health care needs and their families. Outcome measures statement for Goal 2: Attendance/participation in events, evaluation of events to measure effectiveness and learning. Strategy A: Develop and provide training regarding cultural competence for both the provider and the child/family communities. Timing: July 2013 June 2015 Task Leaders: IN ALC Leadership Committee Action 1: Explore and identify existing training curricula (i.e., ISDH, National Center for Cultural Competence, Latino Coalition, etc.) Action 2: Create a schedule/plan to provide training via existing events and opportunities. Action 3: Commit to a provider/community co-trainer model for delivery of cultural competence training. Strategy B: Develop and provide training regarding typical child development and related resources to support maximal opportunity to reach milestones. Timing: June 2013 July 2015 Task Leaders: ISDH/CSHCS, IN ALC Leadership Committee, FVI, ASK, ASI

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Action 1: Explore existing training curricula including various delivery methods (face to face, online, at existing events, in community setting such as child care, church, etc.). Action 2: Include topics such as nutrition, discipline, effects of delays on childs readiness for school, family dynamics, typical child development, sleep issues, etc. Action 3: Explore adaptation of the promotora (teach/learn) approach. Strategy C: Develop and provide training regarding basic Spanish language for access points to health care and other resources. Timing: July 2013 June 2014 Task Leaders: CSHCS, Latino Coalition, IN ALC Leadership Committee Action 1: Action 2: Action 3: Pilot and edit existing curriculum provided by the Latino Coalition as appropriate for community providers. Identify trainers; provide a train the trainer opportunity. Promote training through existing training calendars to community providers.

Goal 3: Awareness In Indiana, Latinos/Hispanics and the community/social service organizations that serve them are aware of the unique cultural issues necessary to maximize access to resources and supports. Outcome measures statement for Goal 3: Attendance/participation in events, evaluation of events to measure effectiveness and learning. Strategy A: Develop materials and training opportunities to enhance cultural competence regarding word use, customs and use of services and supports. Timing: July 2013 June 2015 Task Leaders: CSHCS, IN ALC Leadership Committee Action 1: Action 2: Assign a Task Force to explore existing materials (translation services, etc.) and the specific needs of the target population. Create material and pilot test with target population.

Strategy B: Develop innovative methods for identifying and supporting Latino/Hispanic individuals to pursue careers that support services for CYSHCN and their families.
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Timing: July 2013 June 2015 Task Leaders: Indiana Commission on Latino/Hispanic Affairs, IN ALC Leadership Committee Action 1: Assign a Task Force to explore opportunities and partnerships. Goal 4: Organizational Development and Funding In Indiana, there is an organized and supported effort to improving access to services for the Latino/Hispanic community. Outcome measures statement for Goal 4: IN ALC meets regularly and evaluates its outcomes and activities; funding for activities is accessed. Strategy A: Establish and maintain a stable, consistent, accurate, accessible electronic resource that serves to inform the Latino/Hispanic CYSHCN and their families, and the provider community about resources and supports. Timing: July 2013 June 2015 Task Leaders: CSHCS, IN ALC Leadership Committee Action 1: Identify new and existing resources for the Latino/Hispanic community in Indiana. Action 2: Disseminate resources via existing methods and organizations. Strategy B: Identify funding sources to support identified activities.

Timing: July 2013 June 2015 Task Leaders: CSHCS, IN ALC Leadership Committee Action 1: Partner with the ISDH, CSHCS program to develop a proposal to implement selected activities from the Strategic Plan. Action 2: Explore additional funding sources. Goal 5. Advocacy In Indiana, there is a collective effort to promote improved services for Latino/Hispanic children with special health care needs and their families. Outcome measures statement for Goal 5: IN ALC activities; number of partnerships/collaborations.
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Strategy A: Promote salary/wages for bi-cultural personnel that are commensurate with their skills, experience and work activities. Timing: July 2013 June 2015 Task Leaders: IN ALC Leadership Committee Action 1: Identify ways to advocate for bi-cultural personnel. Strategy B: Promote English as a second language learning opportunities throughout the state. Timing: July 2013 June 2015 Task Leaders: IN ALC Leadership Committee Action 1: Partner with other organizations to provide English language opportunities. Action 2: Identify English as a second language courses and disseminate dates via existing information resources. Strategy C: Participate in program and policy activities that support improved access to services for the Latino/Hispanic population. Timing: July 2013 June 2015 Task Leaders: IN ALC Leadership Committee Action 1: Participate on committees and provide information to legislators and their staff as appropriate (such as the Indiana Commission on Hispanic/Latino Affairs http://www.in.gov/ichla/index.htm).

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Organizational Linkages
The IN ALC is grateful for its many dedicated partners who have contributed significantly to its success. It looks forward to additional partnerships and connections in its efforts to reach the stated goals. Title V, Childrens Special Health Care Services About Special Kids, Inc. (ASK) Family Voices Indiana, Inc. (FVIndiana) Early Childhood Comprehensive System (ECCS): Sunny Start American Academy of Pediatrics (AAP), IN Chapter Indiana LEND Program, Riley Child Development Center IN Commission on Hispanic and Latino Affairs IN Latino Institute Latino Coalition Against Domestic and Sexual Violence, Inc. La Plaza Inc. Children's Bureau, Inc. Autism Society of Indiana Eskenazi Health (Wishard) Patient Navigation (Prenatal Care Coordination) Parent Volunteers

Acknowledgement
Supported by funds from the National Center for Ease of Use of Community-based Services (Grant No. U42MC18283 from MCHB). This IN ALC Strategic Plan was part of the Action Learning Collaborative sponsored by both the National Center and AMCHP.
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