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Dear SPAN Website Users: We try to make our website as accessible as possible for parents and others with special accessibility needs.  Please let us know if you have any difficulty accessing our website information and resources and we will do our best to accommodate you!  Reach out to us at apelham@spannj.org  Thanks, and happy browsing through our website!

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

Lauren Agoratus
Family Voices NJ Coordinator
familyvoicesnj@aol.com
973-642-8100
Diana Autin
Executive Co-Director for Health and Family Support
diana.autin@spannj.org
973-642-8100
What families/professions are saying about this project: 

"This toolkit puts all of the information I need - about health insurance, health advocacy, and healthcare - in one place.  It is easy to understand and use and has lots of tools to help me with any problems I might face!"

Key Resources of Interest: 

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.

Link: http://www.spanadvocacy.org/content/health-advocacy-toolkit-presentation...

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

Link: http://www.spanadvocacy.org/content/health-advocacy-toolkit-presentation...

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

Link: http://www.spanadvocacy.org/content/health-advocacy-toolkit-presentation...

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

Link: http://www.spanadvocacy.org/content/guide-assist-nj-consumer-selection-h...

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

Link: http://www.spanadvocacy.org/content/health-care-financing-factsheets-eng...

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

Link: http://www.spanadvocacy.org/content/healthcare-advocacy-across-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

Link: http://www.spanadvocacy.org/content/being-healthy-adult-how-advocate-you...

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.

Link: http://www.spanadvocacy.org/content/childrens-mental-health-family-guide

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.

Link: http://www.spanadvocacy.org/content/integrating-mental-health-services-p...

Title: National Disability Navigator Resource Collaborative

Description: Resources to assist people with disabilities to enroll in the Marketplace

Link: http://www.nationaldisabilitynavigator.org/resources-links/

Title: Long Term Services and Supports Integrated Care Resource Center

Description: Information on Long Term Services and Supports 

Link: http://www.integratedcareresourcecenter.com/ltss.aspx

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

Link: http://www.hdwg.org/catalyst/medicaid-tutorial

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

Link: http://hdwg.org/catalyst/medicaid-tutorial-webinar

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

Link: http://www.njfamilycare.org/default.aspx

Title: NJ Medicaid Waiver Changes

Description: An overview of NJ Medicaid Managed Long Term Supports and Services

Link: http://www.spanadvocacy.org/content/nj-medicaid-waivers-transition-manag...

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.

Link:  http://ccf.georgetown.edu/aca/ 

Resource: Federal Health Insurance Marketplace

Description: The federal health insurance marketplace has links on who is eligible, comparing plans, help with costs, etc.

Link: www.healthcare.gov

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

Link: http://autisticadvocacy.org/policy-advocacy/policy-advocacy-toolkits/healthcoverage/

Staff: 

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