improving treatment for children with developmental ...developmental disabilities and birth defects...
TRANSCRIPT
Improving Treatment for Children with Developmental Disabilities and Birth Defects
Children with Special Health Care Needs Bureau
Holly Williams, RN, MS, Director
The Bureau of Children with Special Health Care Needs (CSHCN):
Located in the Utah Department of Health, Utah’s Title V Maternal Child Health AgencyNewborn Hearing Oversight & Newborn Blood Screening Follow-up ProgramEarly Intervention (0-3 Years)Multidisciplinary, Developmental ClinicsPregnancy RiskLineBirth Defects Registry
Lack of Early Diagnosisdelays 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:
Financial*Insurance *Out of Pocket costs *Travel *Day/Respite Care
Barriers for Providers:Lack of informationPediatric ShortagesReimbursementAvailable Services
General*Demographics *Access to information*Waiting Lists *Rural vs. Urban*Cultural *Available Services
Successful Systems for All CSHCN include*:
Screening & Early DiagnosisFamilies as PartnersCoordinated Care in a Comprehensive Medical Home Health InsuranceOrganized Services and SupportsTransition 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 DatabaseUtah Clicks-Electronic Access Program for Medicaid, Early Intervention, CSHCNCSHCN Staffing CHEC/EPSTD prior authorization committeeHi*Track Newborn Hearing Screening DatabaseNewborn Bloodspot Screening Follow-up Database
PartnershipsUtah Family Voices & Family to Family Health Information CentersMedical Homes/MedHomePortal.orgMedicaid, Social Security and Vocational RehabilitationUtah Parent CenterUtah Legislative Coalition for People with Disabilities
Collaboration with University of Utah, Utah State University, Local Health Department & Private Entities
Utah Leadership Education In Neurodevelopmental DisabilitiesGenetic & Newborn Screening Advisory CommitteesNewborn Hearing Advisory CommitteeSatellite Clinics in 8 rural sites
Barriers for Utah Legislators:Time to study and understand issuesAccess to accurate informationPrioritizing issues vs.vocal constituents Assumptions about Federal funds & grants
Utah Legislative Support for CSHCN & Families:
Comprehensive Utah Medicaid ProgramCHIP has become an entitlement ProgramMandated 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 StatuteState funding for Utah Birth Defects Registry-will insure Federal CDC fundsState Funding for Utah Autism RegistryFunding 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:
ImmunizationsPreventive screeningMedical Homes
Upcoming Treatment Issues:Prevalence Increases‐NICU, AutismImproved Identification & Treatment‐population screeningProvider & Service ShortagesEconomics & Health Care CostsTransition to Adult Health Care, Genetic Issues
Upcoming Legislative Issues:
Utah Autism InitiativeContinued Early Intervention SupportSupport for flat funded MCH programs-Infrastructure
Start Data Query
State ProfilesQuick Guides
Resources forData Users
cshcndata.org
Web ResourcesState 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