Michigan Title V CSHCN Strategic Planning Session Maternal

Michigan Title V CSHCN Strategic Planning Session Maternal and Child Health Bureau “Let’s Get (it) This Party Started” Diana Denboba April 16, 2008 U. S. Department of Health and Human Services (DHHS) Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau Division of Services for Children with Special Health Needs

What Kind of Party Is this Anyway? es Maternal and Child Health Bureau utcom O e r o C

MCHB : Mission Maternal and Child Health Bureau n The mission of (MCHB) is to provide national leadership, in partnership with key stakeholders, to improve the physical and mental health, safety and well-being of the maternal and child health (MCH) population which includes all of the nation’s women, infants, children, adolescents, and their families, including fathers and children with special health care needs.

Mandates for the System § Amended Legislation for Title V of the Social Security Act (1989): Maternal and Child Health Bureau n n the development of community-based systems of services” Healthy People 2010 Objective 16 -23 n n “Facilitate “Increase the proportion of States and territories that have service systems for children with special health care needs. ” The President’s New Freedom Initiative (2001) n Responsibility given to HRSA for developing and implementing a community-based service system for children and youth with special health care needs and their families.

Who are the Children and Youth? Maternal and Child Health Bureau n “Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. ”

Creating Change n Building on a 20 year history n Maternal and Child Health Bureau n n n Development Demonstration Partial implementation History n n National Agenda for CSHCN Legislative Changes in Title V Healthy People 2000 and 2010 President’s New Freedom Initiative (2001)

Maternal and Child Health Bureau What Is A Community System? Click image to begin Click here to continue Source: Champions For Progress National Center/EIRI

Principles Underlying the System of Services n Maternal and Child Health Bureau n n Family-Centered Culturally-Competent Coordinated Comprehensive Community Inclusion

Monitoring Progress National Survey of CYSHCN n Title V Block Grant Performance Measures/Forms (TVIS) n Discretionary Grant Performance Measures (DGIS) Maternal and Child Health Bureau n

Family/Professional Partnerships & Cultural Competence Outcome n Maternal and Child Health Bureau n n Families will partner in decision making at all levels. Family-Centered Care assures the health and wellbeing of children and families through respectful family/professional partnerships. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family-centered care is the standard of practice that results in high quality services. Family/Professional Partnerships assures that all are working together collaboratively with a sense of shared ownership, responsibility, success, power and respect for each others’ collective knowledge and expertise.

Family/Professional Partnerships & Cultural Competence Outcome Maternal and Child Health Bureau Cultural Competence . . come together in a system, agency or among professionals and enable that system, agency or those professionals to work effectively in cross-cultural situations. *valuing diversity *cultural self-assessment *adapting to diversity *managing the dynamics of difference *institutionalization of cultural knowledge (Modified from Cross, Bazron, Dennis and Isaacs, 1989, by NCCC/Source NCCC)

Cultural Competence: the 3 H Perspective Maternal and Child Health Bureau Head- Understand that people think, believe, behave, perceive, understand, react/respond differently than I do. Hands- Tools, skills and knowledge to work effectively with those who are different from me Heart- Sensitivity to the differences and similarities between and among people; especially those who are different from me.

Maternal and Child Health Bureau Family/Professional Partnerships & Cultural Competence Outcome Why Important? n National Survey for CSHCN 05 -06 n Only 57. 4% of families with CSHCN report they participate in decision making and are satisfied with services they receive (42. 6 not achieved) n 35% lacked one or more components of family-centered care n Poor, children with more complex needs, Hispanic, other non-Hispanic and Black

The Medical Home Outcome Maternal and Child Health Bureau n n An approach to providing health care services in a high-quality, comprehensive, and cost-effective manner. Provision of care through a primary care physician and staff through partnerships with families, CYSHCN, allied health care professionals pediatric sub-specialists, education and other community providers.

The Medical Home Outcome Care that is: n Maternal and Child Health Bureau n n n Accessible Family-centered Comprehensive Continuous Coordinated Compassionate Culturally-effective *And for which the physician shares responsibility

Maternal and Child Health Bureau The Medical Home Outcome Why Important? n National Survey for CSHCN 05 -06 n Only 47. 1 (52. 6%) of families report having all components of a Medical Home. n 31. 8%did not get one or more aspects of care coordination. n Better Health Outcomes n Reductions in disparities in health between socially disadvantaged subpopulations and more socially advantaged populations. * n Increased wellness resulting from comprehensive care. * * Starfield B, Shi L. The Medical Home, Access to Care, and Insurance: A Review of Evidence. Pediatrics. 2004: 113(suppl): 1493 -1498

Early & Continuous Screening Outcome Maternal and Child Health Bureau n n Early and periodic/on-going developmental screening and monitoring for all children and youth in conjunction with the medical home. Develop and monitor the efficacy of statewide newborn and infant hearing screening, evaluation and follow-up programs

Maternal and Child Health Bureau Early & Continuous Screening Outcome Why Important? n National Survey for CSHCN n Only 63. 8% of CSHCN were screened early and continuously for special needs. n Only 48% of CSHCN below the poverty level were. n 40 -50% of infants needing some follow-up are lost (UNHS) n Early identification and continuous screening is critical: n Provision of appropriate services and ongoing assessments n Reduce long term, secondary consequences n Support families

Maternal and Child Health Bureau Access to Adequate Public or Private Insurance to Pay for Needed Services Outcome n Expand Insurance for Uninsured CYSHCN n Assure Comprehensive Coverage for CYSHCN with Insurance n Strengthen the Financing System n n n Uninsured and underinsured Improve identification of CYSHCN Increase outreach & enrollment Raise income eligibility levels, expand buy-in options Improve affordability (e. g. premium subsidies) Buy in options, especially for small business

Access to Adequate Public or Private Insurance to Pay for Needed Services Outcome Why Important? n National Survey of CSHCN Maternal and Child Health Bureau n n n Only 62. 0% feel adequately insured for services they need. 18. 1% experience financial problems. Impact on family n 1/2+ of families spend $250 or more out of pocket, 20% of families spent more than $1, 000 Medicaid & SCHIP limit co-pays, don’t have data on unpaid bills.

Integrated Community Systems Outcome Maternal and Child Health Bureau n To support states and community development activities that enhance capacity to address service integration issues of CYSHCN and their families so that services are organized in ways that families can use them easily and be satisfied with services they receive.

Integrated Community Systems Outcome Why Important? n National Survey for CSHCN n Maternal and Child Health Bureau n n n Only 89. 1% families report services are easy to use. 19. 5% Spanish language homes report outcome not achieved. 22% of those with emotional, behavioral or developmental issues report outcome not achieved More difficult for complex medical needs, minority populations.

Cshcndata. org Maternal and Child Health Bureau OUTCOME Community-based service systems organized for easy use Michigan

Maternal and Child Health Bureau Transition to Adult Life Outcome “The optimal goal of health care transition is to provide health care that is family-centered, continuous, comprehensive, coordinated, compassionate, & culturally competent in a health care system that is as developmentally appropriate as it is technically sophisticated. ” SOURCE: PEDIATRICS Vol. 110 No. 6 December 2002, pp. 1304 -1306. A Consensus Statement on Health Care Transitions for Young Adults with Special Health Care Needs

Maternal and Child Health Bureau Transition to Adult Life Outcome Why Important n National Survey of CSHCN n Only 41. 2 % (6%) of youth receive guidance and support in the transition to adult health care and have vocational/career training to prepare for adult job n Only 67. 1% of mother only households achieve outcome n Trends n 90% of CYSHCN are living to adulthood n Employment rate for adults with disabilities hovers around 30%. (U. S. Disability Statistics) n Natural progression in a lifespan approach to systems of care for CYSHCN.

Transition to Adult Life Maternal and Child Health Bureau Race & Ethnicity in Michigan

Maternal and Child Health Bureau What Does This Mean For You? Grants, family leaders, other agencies

Watch for Signs Along Your Journey!! Hidden Entrance – Unforeseen Opportunities, Work Zone – Many Partners/Non. Traditional Divided Highway – Integrate Maternal and Child Health Bureau Detour- More Than One Method/Communities Differ New Traffic Pattern – New Paradigm Stop Light Competing Priorities Hazardous Driving Conditions – Identify Challenges Watch for Pedestrians & Cyclists – Look for the “Champions” Slow Speed – Evaluate: Participatory Action Research (PAR) Toll Ahead – Budgets Reflect Priorities Adapted from: T. D. Goode National Center for Cultural Competence, 2005

Strategic Planning! Oh No!! Maternal and Child Health Bureau The Non-Inclusive Way Michigan’s way- Everyone has a role, so be a “Champion!”

Contact Maternal and Child Health Bureau n n n Diana Denboba, Family-Centered Care/Cultural Competence and Community Integrated Systems Programs Director 301 -443 -9332; DDenboba@hrsa. gov Handouts n Michigan State Profile