Improving Treatment for Children with Developmental Disabilities and Birth Defects

Children with Special Health Care Needs Bureau

Holly Williams, RN, MS, Director

2008hollywilliams@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 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