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Following is a list of websites HomePEN consumers and clinicians may be interested in visiting. The Oley Foundation does not endorse these websites or their sponsoring organizations and cannot be responsible for information they contain. As with any information found on the internet we strongly suggest you discuss it with an appropriate professional before making any changes in your health care, insurance coverage, home care supplier etc.
Insurance / Disability Benefits & Resources
- A Guide for Disabled Homebuyers
A Guide for Disabled Homebuyers
- A Resource Guide for Enteral Formula Coverage
A Resource Guide for Enteral Formula Coverage
by Traci Nagy
- Affordable Health Insurance
(Canadian Members Only)
- Centers for Medicare and Medicaid Services
Centers for Medicare and Medicaid Services
- Chai Lifeline
(helps children and families suffering from serious illness)
- Children’s Milk Allergy and Gastrointestinal Coalition (MAGIC)
Advocating for insurance reimbursement for formula
- Chronic Disease Fund
(provides assistance for certain chronic illnesses or rare diseases, including Crohn’s disease; check to see if they are accepting new enrollees)
- Civil Rights and Disability Related-Resources
Civil Rights and Disabilities Related-Resources
- Cobra Health State Law Directory
(some states allow employees to extend COBRA beyond the initial 18 months)
- College Assistance Guide for People with ADHD
ADHD College Assistance Guide
- Digestive Disease National Coalition (DDNC)
Digestive Disease National Coalition (DDNC)
- Employees' Practical Guide to Negotiating and Requesting Reasonable Accommodations
Employees' Practical Guide to Negotiating and Requesting Reasonable Accommodations
- Family to Family Health Information Center
(Assistance with health care, public benefits and other health care financing options in Massachusetts)
- Financial Assistance for Accessibility Home Repairs and Modifications
Financial Assistance for Accessibility Home Repairs and Modifications
- First Hand Foundation
First Hand Foundation
- Food & Drug Administration
Access to Investigational Drugs
- Food & Drug Administration
Brochure “Infusion Therapy” - Getting the Most Out of Your Pump
- Food & Drug Administration
Dissolution Methods -- guidelines on how to dissolve different medications
- Food & Drug Administration
Drug Shortages Information
- Food & Drug Administration
Medical Device Safety
- Food & Drug Administration
Medwatch
- Frequently Asked Questions Regarding HPN Reimbursement (from NHIA)
Frequently Asked Questions Regarding HPN Reimbursement (from NHIA)
- Health and Human Services
Health and Human Services
- Health Care Financing Administration (HCFA)
Health Care Financing Administration (HCFA)
- Health Insurance Finders
(Suggestion: use the top menu on this site--individual, group, etc.--for an overview before picking your state)
- Health Insurance Resource Center
(includes links to information on high-risk health insurance pools)
- Healthcare.Gov
Healthcare.Gov
- HelpHopeLive
(Helps families establish fundraising campaigns in honor of individuals facing a transplant or other treatment. Formerly NTAF)
- Information and Technical Assistance on the Americans with Disabilities Act
Information and Technical Assistance on the Americans with Disabilities Act
- Information on tax credits for conference-related expenses
Information on tax credits for conference-related expenses.
- Jake's Help From Heaven
Jake's Help From Heaven, founded in 2011, is a non-profit foundation dedicated to supporting individuals with multiple medical challenges and disabilities. Countless challenges occur in caring for medically fragile, special needs individuals. Our goal is to assist individuals affected by debilitating illnesses.
- Kids Medicaid Waivers
Your Source for Children's Medicaid Waiver Programs
- Marcel’s Way Family Fund
(provides financial assistance for families dealing with mitochondrial disease)
- Medicaid: State by State Descriptions & Plans
Medicaid: State by State Descriptions & Plans
- Medical Food Reimbusement
State by State Coverage of Medical Food Reimbursement
- Medicare
Medicare
- Medicare Appeals Process
Medicare Appeals Process
- National Health Law Program (NHeLP)
National Health Law Program (NHeLP)
- NeedyMeds
Helps people who cannot afford medicine or health care costs
- Nestle Nutrition Reimbursement
Nestle Nutrition Reimbursement
- Parent-to-Parent New York State
(health insurance information, training and resources)
- Patient Access Network (PAN)
(provides assistance for certain chronic illnesses or rare diseases, including short bowel syndrome)
- Patient Advocate Foundation (PAF)
Patient Advocate Foundation (PAF)
- Paying for Enteral Nutrition: “Thinking Outside the Can”
(Part 1-for children)
- Paying for Enteral Nutrition: “Thinking Outside the Can”
(Part 2-for adults)
- Personal Finance Guide for People with Disabilities
Includes: overview, what to consider when creating a budget checklist, ways to save, set financial goals, and additional resources
- Reimbursement Tips/Sample Appeal Letters for EN formula
From Nutricia North America
- Resources for Insurance Coverage
Insurance Coverage
- Social Security Administration
Social Security Administration
- Social Security Work Site
Social Security Work Site
- State Insurance Mandates for Elemental Formula
State coverage of elemental formulas
- State-by-State Insurance Information
(NORD’s resource guide for state insurance marketplace information)
- Students with Disabilities: Preparing for Postsecondary Education
Know your rights and responsibilities
- The Arc of Indiana
(helps families sign up for Medicaid waiver and provides other assistance for residents of Indiana)
- The Personal Costs of Caring for a Child with a Disability
The Personal Costs of Caring for a Child with a Disability: A review of literature
- The Social Security and Disability Resource Center
(developed by a former claims examiner, this site covers disability applications, claims denials, filing appeals, claims evaluation process, etc.)
- Tips for Writing a Winning Appeal Letter
Tips for Writing a Winning Appeal Letter
- Tips for Writing a Winning Appeal Letter
(From Complex Child E-Magazine web site)
- Transplant Financial Resources
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