improving treatment for children with developmental ...developmental disabilities and birth defects...

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