MEASURING SUCCESS October 1999, Run Time 9 minutes FINAL video script (text only) PRESIDENT ROOSEVELT: This Social Security measure gives at least some protection to 50 million of our citizens. FILM NARRATOR: And it became law a few days later when it was signed by the president of the United States. PRESIDENT BUSH: This historic act is the world’s first comprehensive declaration of equality for people with disabilities. The first. PRESIDENT CLINTON: Where people are measured not by their disability, in a way we all have them, but by their drives and their dreams. HOST: As a policy maker, health care provider, or family advocate, you're familiar with the landmarks in legislation that have made possible so many programs that benefit children and youth with Special Health Care Needs. We can all be very proud that so much progress has been made. Having practiced general pediatrics for a long time, I can vividly recall working with families, trying to create a medical home before we gave it a name. I can remember what it was like for families before Medicaid, EPSDT and early intervention programs, before Title V became a system builder, before developmental observation became standard practice and before family centeredness was a valued concept. With all these system tools in hand there are still unresolved issues and much still to do. I'm Gil Buchanan, Medical Director of Children's Medical Services, a Title V program for Children with Special Health Care Needs. The Maternal and Child Health Bureau has put forward some well studied guidelines as part of a National Agenda for children and youth with Special Health Care Needs. “Measuring Success” is intended to help you evaluate your role in health care as we all strive to reach a higher mark. The ultimate goal is to provide comprehensive, family- centered, community-based, culturally competent and coordinated care for all children and youth with special health care needs. NARRATOR: Children and youth with Special Health Care Needs are those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions, who require health and related services of a type or amount beyond that required by children generally. HOST: With a clear goal in mind, developing strategies of evaluation becomes ever more important. Several critical indicators of progress can help you focus your efforts. NARRATOR: A Medical Home is not an institution of brick and mortar, but simply a source of ongoing coordinated health care for a child or youth from someone they know and trust. Physicians, in partnership with families, deliver and direct all aspects of care. Children and youth with special needs are sometimes overlooked for routine health care as they bounce between specialists. A medical home with a primary care provider can ensure comprehensive care that addresses common problems and coordinates with specialty services. To access medical services, families must be confident they can pay for them. Children with Special Health Care Needs programs are playing a bigger role. Cooperative agreements among C-S-H-C-N, Part C, Medicaid, Title 21 State Children's Health Insurance Programs, and other programs form a broad base of coverage for needed medical services. As always, interagency coordination is key. For many families, the problem of under insurance becomes a major obstacle. Strategies must be developed to monitor both the existence and adequacy of coverage. The medical home provides one of the best opportunities for screening -- vision, hearing, speech, overall development & general health. Screening is, however, often accomplished in a variety of settings. Therefore, interagency coordination is imperative. CSHCN programs should cultivate partnerships to ensure continuous screening. Though lacking full, consistent implementation, the Early and Periodic Screening, Diagnosis, and Treatment Program, (EPSDT), for Medicaid eligible children, serves as a good model. Early screening leads to early intervention, while data tracking ensures follow-up. Families need access to services that are family-centered, community-based, culturally competent and coordinated. The emphasis on community-level needs assessment facilitates appropriate planning to address unique needs. Families are the constants in a child's life and are pivotal in making any system work. Families must play a decision-making role at all levels of policy, programs, and practice. Many states hire family leaders to serve as staff to conduct training, needs assessment, and advocacy. Advisory councils give families a strong voice in policymaking and satisfaction surveys help define critical issues. While rapid advances in medical science have enabled more than 90% of children born with special needs to reach adulthood, they are much less likely than their non-disabled peers to finish high school, pursue post-secondary education, get jobs, or live independently. Unfortunately, only about 20% of federal disability programs focus on employment as an issue. The result is that many adolescents and young adults remain dependent on family members, pediatric service providers and public programs rather than becoming productive members of society and part of the workforce. Health care services must be expanded to embrace self- determination and youth empowerment, preparing individuals to take charge of their own health care and to lead a productive life as they so choose. In summary, Performance Outcomes for Measuring Success include: 1. Children receive regular, ongoing, comprehensive care within the medical home. 2. Families have adequate insurance to pay for needed services. 3. Children are screened early and continuously for special health care needs. 4. Services are organized in ways that families can use them easily. 5. Families are decision-makers and satisfied with services. 6. Youth receive services necessary to make appropriate transition to adulthood. In striving for these goals, family surveys and data systems are indispensable tools. HOST: It just seems like good common sense - but that doesn’t mean it’s going to be easy. It takes a sustained effort to turn good ideas into good systems of health care. We need to define what is essential in health care services. We need to document what’s available and what’s missing for children and youth with special health care needs and their families. In some cases it can make all the difference in the world, assuring that children get the health care they need. I encourage you to take this vision home with you, to muster up the determination to improve health services in your hometown.