1	Children with Special Health Care Needs Resources for Children and Families Holly Balken, RN, MS July, 2003
2	Federal Initiatives-National Maternal Child Health Bureau
3	Defining Children with Special Health Care Needs Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. Pediatrics Vol. 102 No. 1 July 1998
4	Profiles of Children with Special Health Care Needs Using the MCH definition (very broad) 15-20% of the population: 12.6 million children nationally National CSHCN Survey: Utah 12-13% CSHCN identified
5	Measuring Success for Healthy People 2010 A National Agenda for Health of all Americans
6	CSHCN Performance Outcomes, from HP 2010 All children with special health care needs will receive regular ongoing comprehensive care within a medical home. All families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need.
7	CSHCN Performance Outcomes, from HP 2010 All children will be screened early and continuously for special health care needs. Services for children with special health care needs and their families will be organized in ways that families can use them easily.
8	CSHCN Performance Outcomes, from HP 2010 Families of children with special health care needs will participate in decision making at all levels and will be satisfied with the services they receive. All youth with special health care needs will receive the services necessary to make appropriate transitions to all aspects of adult life, including adult health care, work, and independence.
9	Federal MCH/CSHCN Public Health Services Direct Medical Care Services Enabling Services Population Based Services Infrastructure Building
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11	Utah Initiatives
12	CSHCN Public Health Services Infrastructure Building Telehealth Medical Home Early Hearing Detection and Intervention Cultural Competence Transitions Genetics Planning and Implementation Access to care-Specialty Clinics, Support to Access Medicaid/SSI
13	CSHCN Public Health Services Population Based Services Newborn Blood Screening Newborn Hearing Screening Birth Defects Registry (866-818-7096) Pregnancy Risk Line (800-822-2229) Autism Registry (800-829-8200 Ext.) BabyWatch Early Intervention (800-961-4226)
14	CSHCN Public Health Services Enabling Services Early Intervention Medicaid Waiver for Tech Dependent Children SSI/CHIP/Medicaid outreach Case management Fostering Healthy Children
15	CSHCN Public Health Services Direct Medical Care Services Itinerant Multidisciplinary Clinics Child Development Clinic Adaptive, Behavioral and Learning Environments Clinic Specialty Clinics Neonatal Follow up Clinic
16	Medical Home
17	Medical Home A medical home is not a building, house, or hospital, but rather an approach to providing health care services in a high-quality and cost-effective manner. Primary care providers, families, and allied health care professionals act as partners in a medical home to identify and access all the medical and non-medical services needed to help children and their families achieve their maximum potential.
18	120 pediatricians were asked, “Approximately how many patients in your practice have chronic special health care needs?” 54% reported 0-25 patients 11% reported 26-50 patients 14% reported 51-75 patients 7% reported 76-100 patients 12% reported greater than 100 patients
19	“What would help you the most in your care of children with special health care needs?” 32% Case manager in the office 11% Better access to subspecialists 24% More information on community resources 10% Better reimbursement 24% Disease specific practice guidelines
20	Utah Collaborative Medical Home Project Joint project: CSHCN and the University of Utah Department of Pediatrics Funded by Maternal and Child Health Bureau Other collaborators include: Medicaid, Family Voices, Early Intervention Research Institute
21	Current MedHome Web Portal
22	Tour of the Portal: http://medhome.med.utah.edu
23	Families’ “Wish List” of Support Services Community Resources Financial info/help Parent Support Group Recreational Activities Psychological Services Summer Camp Vocational Counseling Dental Treatment Respite Care Help with behavioral problems Other services
24	Community Resources for CSHCN Informal Supports Family Support Groups Advocacy and Empowerment Day Care Respite Recreational Resources Assistive Technology Clothing Pediatric Annals November 1997
25	Community Resources for CSHCN Formal Supports Educational Supports Financial Supports Personal Assistance Programs Physical Supports Pediatric Annals November 1997
26	School Early Intervention IDEA/IEP 504
27	Health Care Funding CHIP-Child Health Insurance Program Medicaid-Traditional, Spend down, Waivers Uninsurable Risk Pool Commercial Insurance-COBRA, HIPAA
28	Family Support Respite Parent to Parent Contact Information Resources
29	Other Resources DSPD-Division of Services to People with Disabilities Vocational Rehabilitation Attendant Care (18 yrs +) Waiver PASS (plan to achieve self sufficiency) plan-SSI
30	Utah Parent Center A parent to parent program that provides information, training and support to parents to help their children with disabilities live included, productive lives as members of their community. State: 1-800-468-1160 SLC: 272-1051 Web: www.utahparentcenter.org
31	Office of Consumer Health Assistance (OCHA) Office established within the Department of Insurance to provide information, education and advocacy services to individuals struggling with health care insurance and the health care system. OCHA: 538-3077
32	Family Voices A national grassroots network of families and friends speaking on behalf of children with special health care needs. Gina Pola-Money---Utah Coordinator Phone 631-1609 Email: utahfamilyvoices@juno.com
33	Medicaid Constituent Services Service that addresses Medicaid barriers, processes and resources. Phone: 538-6417 Toll free: 1-877-291-5583
34	Child Care Subsidized Care and Increased Reimbursement for Children with Disabilities Department of Workforce Services: 526-9675
35	Access Utah Network Provides information and referral regarding services and issues related to people with disabilities. Information provided on: Services and supports Used equipment New assistive devices Americans with Disabilities Act Phone: 533-4636 Toll free: 1-800-333-8824
36	The Network Pages These “pages” describe the key divisions, agencies, organizations and programs offered by the State of Utah for families with young children age 0-8 and provide additional resource information on associations, organizations and institutions that are part of the early childhood network in Utah and the United States. Utah Head Start State Collaboration Project Phone: 801-538-9312
37	Travis C. Waiver for Technology Dependant Children Medicaid waiver for children under age 21 who are dependant on specific types of technology. Phone: 584-8505