Health Advocacy Toolkit
The overall goal of SPAN's Health Advocacy Manual project is to develop, disseminate, and help families and people with developmental disabilities use, high quality, relevant, and easy-to-use tools that enhance their capacity to understand and effectively navigate systems of health coverage and health care, including Medicaid managed care, changes Medicaid waiver services, the Affordable Care Act (ACA), and primary and specialty care including dental care, through creation and dissemination of an easy-to-use tool kit, in English and Spanish that will help family members and people with DD find the supports they need for their health and health care. The tool kit will be disseminated through multiple mechanisms, including our bi-weekly SPAN e-newsletter; housing it on the SPAN website; soliciting partners from the COCC (over 100 agencies and organizations) to link to it on their websites; featuring it on the state’s early childhood parent website; disseminating it through various networks, and our staff and volunteers, as well as through county workshops that will be integrated into our F2F Health Information Center.
SPAN''s Health Advocacy Manual provides information and tools for families of and individuals with developmental disabilities to be able to access health insurance/health coverage and healthcare. Individual technical assistance is available for families via our Family to Family Health Information Center and SPAN's warmline, 800-654-SPAN.
Funded by NJ Council on Developmental Disabilities
For each resource list:
Title: Healthcare Advocacy Toolkit Guide for Families and Individuals with Developmental Disabilities
Description: This guide provides an overview of critical information needed by families of and individuals with developmental disabilities to access health insurance and health care.
Link to specific resource in Resource section: http://www.spanadvocacy.org/content/gps-families-and-individuals-disabil...
Title: Healthcare Advocacy Toolkit Health Insurance and Healthcare Financing Presentation Part I
Description: This powerpoint presentation provides an overview of health insurance and healthcare financing options for families of and people with DD including Medicaid and the Marketplace.
Title: Healthcare Advocacy Toolkit Health Partnerships, Health Resources, Appeals Presentation Part II
Description: This powerpoint presentation provides an overview of the six core outcomes for children and youth with special needs, family-professional partnerships, health promotion, and appeals
Title: Healthcare Advocacy Toolkit Transition to Adult Healthcare Presentation Part III
Description: This powerpoint presentation provides an overview of integrating healthcare into the transition IEP
Title: Guide to Assist NJ Consumers to Select Health Plans in the Affordable Care Act Marketplace
Description: This guide by the Sentinel Project provides information to assist NJ consumers to select Health Plans in the Affordable Care Act Marketplace
Title: Healthcare Financing Fact Sheet Series (English & Spanish)
Description: This series of fact sheets provides information on various healthcare financing options for children, youth and adults with disabilities in NJ
Title: Healthcare Advocacy Across the Lifespan: What Parents of Children with Disabilities Need to Know
Description: This guide provides information for parents of children with disabilities on healthcare coverage, resources, and advocacy strategies across the lifespan
Title: Being a Healthy Adult: How to Advocate for Your Health and Healthcare (Boggs Center on Developmental Disabilities)
Description: This is a guide for young adults that includes frequently asked questions and a series of activities to use to become an effective advocate, especially when you have special health care needs
Title: Family Guide to Children's Mental Health (NJ)
Description: This guide provides information for families, especially families who have children with mental health challenges, about children's mental health rights and resources.
Title: Integrating Mental Health Services into Primary Care Guide for Families
Description: This guide for families provides information on how and why mental health services for children should be integrated into primary care.
Title: National Disability Navigator Resource Collaborative
Description: Resources to assist people with disabilities to enroll in the Marketplace
Title: Long Term Services and Supports Integrated Care Resource Center
Description: Information on Long Term Services and Supports
Title: Public Insurance Programs and Children with Special Healthcare Needs (Medicaid & State Children's Health Insurance Program)
Description: This is a tutorial by the Catalyst Center/National Center for Healthcare Financing for Children with Special Healthcare Needs, on Medicaid and SCHIP
Title: Public Insurance Programs and Children with Special Healthcare Needs Webinars
Description: This is a series of webinars on Medicaid and SCHIP for children with special healthcare needs
Title: Arc Mainstreaming Medical Care Project
Description: The Arc of NJ's Mainstreaming Medical Care Program promotes quality health care for people with developmental disabilities across the lifespan
Link: www.arcnj.org/programs/mainstreaming_medical.htm (includes link to Health Times newsletter)
Title: NJ Family Care (Medicaid and State Children's Health Insurance Program)
Description: NJ Family Care is the federal and state-funded health insurance program that helps qualified NJ resident of any age access affordable health insurance
Title: NJ Medicaid Waiver Changes
Description: An overview of NJ Medicaid Managed Long Term Supports and Services
Title: Georgetown University Health Policy Institute Center for Children and Families Affordable Care Act Resources
Description: The Georgetown University Center for Children and Families (CCF) is an independent, nonpartisan policy and research center founded in 2005 with a mission to expand and improve health coverage for America’s children and families.
Resource: Federal Health Insurance Marketplace
Description: The federal health insurance marketplace has links on who is eligible, comparing plans, help with costs, etc.
Resource: National Center for Family and Professional Partnerships-ACA page
Description: The National Center for Family/Professional Partnerships (NCFPP) provides information, tools, and assistance to help families and professionals partner to improve services for families of children/youth with special health care needs.
Link: http://www.fv-ncfpp.org/tools-and-resources/aca/ (also includes ACA blog focused on children with special healthcare needs)
Resource: Autistic Self Advocacy Network Health Advocacy Toolkit
Description: The Autistic Self-Advocacy Network (ASAN) has developed a Health Advocacy Toolkit which can be accessed at http://autisticadvocacy.org/policy-advocacy/policy-advocacy-toolkits/healthcoverage/. The toolkit includes a Guide to Medicaid Coverage for Individuals which can be found at http://autisticadvocacy.org/wp-content/uploads/2015/07/Health-Insurance-and-Medicaid-Coverage-for-Autism-Services-A-Guide-for-Individuals-and-Families-7-9-15.pdf and a Guide to Accessing Home and Community Based Services, found at http://autisticadvocacy.org/wp-content/uploads/2014/11/Accessing-HCBS-Guide-v1.pdf.
Lauren Agoratus, Coordinator
Carolyn Hayer, Director of Parent and Professional Development
Mercedes Rosa, Director of SPAN's Family to Family Health Information Center
Diana Autin, SPAN Executive Co-Director for Health and Family Support