Improving Treatment for Children with Developmental Disabilities and Birth Defects Children with Special Health Care Needs Bureau Holly Williams, RN, MS, Director 2008 hollywilliams@utah.gov
The Bureau of Children with Special Health Care Needs (CSHCN): Located in the Utah Department of Health, Utah s Title V Maternal Child Health Agency Newborn Hearing Oversight & Newborn Blood Screening Follow-up Program Early Intervention (0-3 Years) Multidisciplinary, Developmental Clinics Pregnancy RiskLine Birth Defects Registry
Lack of Early Diagnosis delays treatment There is a short window of opportunity in which to optimize the benefits of early identification and treatment (deafness, metabolic disorders, autism)
Barriers to Treatment for Utah Families: General *Demographics *Access to information *Waiting Lists *Rural vs. Urban *Cultural *Available Services Financial *Insurance *Out of Pocket costs *Travel *Day/Respite Care Barriers for Providers: Lack of information Pediatric Shortages Reimbursement Available Services
Successful Systems for All CSHCN include*: Screening & Early Diagnosis Families as Partners Coordinated Care in a Comprehensive Medical Home Health Insurance Organized Services and Supports Transition to Adult Services *hrsa.gov/mchb
CSHCN Efforts: CSHCN Information and support for Children & Families, using multiple funding streams Full time staff to provide direct SSI and Transition Support Onsite Medicaid Outreach Worker in SLC Medical Home Development & Training Multicultural Health (Legislative Funding) Federal Grants
CSHCN Strategies through Collaboration Fostering Healthy Children Program-SAFE Healthcare Database Utah Clicks-Electronic Access Program for Medicaid, Early Intervention, CSHCN CSHCN Staffing CHEC/EPSTD prior authorization committee Hi*Track Newborn Hearing Screening Database Newborn Bloodspot Screening Follow-up Database
Partnerships Utah Family Voices & Family to Family Health Information Centers Medical Homes/MedHomePortal.org Medicaid, Social Security and Vocational Rehabilitation Utah Parent Center Utah Legislative Coalition for People with Disabilities
Collaboration with University of Utah, Utah State University, Local Health Department & Private Entities Utah Leadership Education In Neurodevelopmental Disabilities Genetic & Newborn Screening Advisory Committees Newborn Hearing Advisory Committee Satellite Clinics in 8 rural sites
Barriers for Utah Legislators: Time to study and understand issues Access to accurate information Prioritizing issues vs. vocal constituents Assumptions about Federal funds & grants
Utah Legislative Support for CSHCN & Families: Comprehensive Utah Medicaid Program CHIP has become an entitlement Program Mandated Newborn Hearing Screening (Federal Grant funded) Mandated Newborn Blood Spot Screening (Kit Fee funded)
Utah Legislative Support for CSHCN & Families: Coordinating Council for People with Disabilities in Statute State funding for Utah Birth Defects Registry-will insure Federal CDC funds State Funding for Utah Autism Registry Funding for Prevention of Drug/Alcohol Abuse during Pregnancy-demonstration
Utah Health Care Reform Act 2007 Legislation Child Health Advanced Record Management/Clinic Health Information Exchange Insurance Reform to include required coverage of: Immunizations Preventive screening Medical Homes
Upcoming Treatment Issues: Prevalence Increases NICU, Autism Improved Identification & Treatment population screening Provider & Service Shortages Economics & Health Care Costs Transition to Adult Health Care, Genetic Issues
Upcoming Legislative Issues: Utah Autism Initiative Continued Early Intervention Support Support for flat funded MCH programs- Infrastructure
cshcndata.org Start Data Query Quick Guides State Profiles Resources for Data Users
Web Resources State specific Maternal Child Health/Children with Special Health Care Needs websites, Utah s: http://health.utah.gov/cshcn/ http://cshcndata.org/ http://www.medhomeportal.org/ http://www.familyvoices.org/ http://www.taalliance.org/ http://mchb.hrsa.gov/programs