Improving Treatment for Children with Developmental Disabilities and Birth Defects

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1 Improving Treatment for Children with Developmental Disabilities and Birth Defects Children with Special Health Care Needs Bureau Holly Williams, RN, MS, Director 2008

2 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

3 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)

4 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

5 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

6 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

7 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

8 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

9 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

10 Barriers for Utah Legislators: Time to study and understand issues Access to accurate information Prioritizing issues vs. vocal constituents Assumptions about Federal funds & grants

11 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)

12 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

13 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

14 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

15 Upcoming Legislative Issues: Utah Autism Initiative Continued Early Intervention Support Support for flat funded MCH programs- Infrastructure

16 cshcndata.org Start Data Query Quick Guides State Profiles Resources for Data Users

17

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19 Web Resources State specific Maternal Child Health/Children with Special Health Care Needs websites, Utah s:

Focus: Children and Youth With Special Health Care Needs (CYSHCN) Children & Youth With Developmental Delays

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