Every state’s Medicaid and CHIP program is changing and improving – most states are expanding coverage for low-income adults; all states are modernizing their Medicaid/CHIP eligibility, enrollment and renewal processes and systems, and taking advantage of many of the new flexibilities provided by the Affordable Care Act. Finally, states are coordinating the application and enrollment process with the messaging and policies for the Health Insurance Marketplace operating in their state to ensure that there is no wrong door to coverage.
Now that you are all signed up for your insurance plan, learn how to navigate it! NORD hosted a webinar to aid rare disease patients and caregivers in learning how to make their health insurance work for them. The webinar recording here covers how insurance works, an overview on the approval process and tips on how to successfully reverse a denial.
Prescription drug prices are not regulated. The cost of a prescription may differ by more than $100 between pharmacies across the street from each other! Insurance isn’t helping like it used to. In the past 10 years, insurance companies have passed 25-80% more of the cost of drugs onto patients. GoodRx gathers current prices and discounts to help you find the lowest cost pharmacy for your prescriptions. The average GoodRx customer saves $276 a year on their prescriptions. GoodRx is 100% free. No personal information required.
Needy Meds is a nonprofit organization that lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs. You can contact them directly at 800-503-6897.
Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
Premium Assistance Program
(PAF) provides case management assistance for the uninsured or underinsured with life-threatening or debilitating illnesses. Services include help with the following: access to care; co-pay assistance; social security disability applications; and insurance appeals. PAF also has a National Financial Resource Directory that allows patients to find resources within a given state. You can contact PAF directly at 800-532-5274.
(PhRMA) created a tool that allows patients to search for financial assistance resources offered through various biopharmaceutical industry programs to help cover the cost of medications.
Kids’ Waivers is a compilation of information about Medicaid waivers, Katie Beckett or TEFRA programs, and other programs for children with disabilities or medical needs. This website is the product of years of ongoing research on these programs. To learn more about specific programs, you can compare states and obtain basic information using our sortable full list of programs. We also have more detailed pages for each state, which can be accessed by clickable map or text links. Please note that Kids’ Waivers does not operate any of these waiver programs, and we cannot place your child in a program, verify your child’s application, or verify any details about your child’s current program. We can only point you toward the programs that are available in your state.
Every state has services for children with special health care needs. The Maternal and Child Health Services Block Grant, or Title V of the Social Security Act, funds these services. The grant tasks each state with ensuring the health of our nation’s women and children, including children with special health care needs and their families. Each state is permitted to tailor its services and programs to best meet its specific needs. This variation between states can be confusing because state Title V programs often have different titles and types of service.
The Social Security Administration (SSA) runs two disability programs known as Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
Travel and Clinic Support fund is designed to support Dup15q Alliance Clinics and help families who have a need for their child seen at a Dup15q Clinic
Although our name may be Wheelchairs 4 Kids, our plan involves so much more than providing wheelchairs for America’s disabled children. Our goal is to give every child with mobility challenges the best opportunity to live life at its’ fullest. We provide wheelchairs, gait trainers, AFO’s, hoyer lifts, adaptive strollers, adaptive bikes, bathing solutions, vehicle modifications (contingent on the type of vehicle) and some home modifications providing the family owns the home. The child must be under the age of 21 and have a member of their medical team verify their medical condition and mobility needs.
Keep Swimming Foundation is a nonprofit organization that provides financial relief to families of critically ill patients who require extended inpatient medical care at an accredited USA hospital. While health insurance provides support for medical costs, families faced with extended inpatient care typically shoulder the burden of the external costs associated with visiting and caring for their loved one. Because of this need, Keep Swimming Foundation was born. Expenses Covered: Hotel Rooms, Bedside Meals, Parking, Public Transportation, Gasoline, Rent and Mortgage Payments.
Children being referred for assistance must reside or be treated in Pennsylvania, New Jersey, or Delaware. Families may not apply to the Fund directly. Referrals must be made by a healthcare professional (for example, a social worker, case manager, nurse, doctor, or therapist). Provide assistance with expenses not covered by insurance, such as: Utility and phone bills, Mortgage/Rent, Car payments, Transportation costs, Disability needs, Air conditioners for children with severe pulmonary, cardiac, skin, liver, and kidney diseases, Medically necessary dietary supplements, special foods, and formulas, Co-pays, Child care, Funeral expenses. Assistance is paid directly to vendors or creditors to avoid misappropriation of funds.
The HealthWell Foundation is a leading non-profit dedicated to improving access to care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. Provide financial assistance to help with: Prescription copays, Health insurance premiums, deductibles and coinsurance, Pediatric treatment costs, Travel costs.
ABLE Accounts, which are tax-advantaged savings accounts for individuals with disabilities and their families. he beneficiary of the account is the account owner, and income earned by the accounts will not be taxed. Contributions to the account, which can be made by any person (the account beneficiary, family and friends), must be made using post-taxed dollars and will not be tax deductible for purposes of federal taxes, however some states may allow for state income tax deductions for contribution made to an ABLE account.
Andre Sam, a comprehensive Disability & Special Needs Planner Presents “Planning for your Family, from Beyond All Limits (2019) 10th INTERNATIONAL FAMILY CONFERENCE.
A tool kit to provide you with essential information and guidance you need to develop a plan for your child’s financial future.
Scholarships and Grants
First Hand Foundation
First Hand provides funding for children whose families cannot afford medical care, equipment, vehicle modifications, or displacement related to care. Review the assistance criteria and financial guidelines to determine if your child qualifies for funding.
UHCCF’s mission is to help fill the gap between what medical services/items a child needs and what their commercial health benefit plan will pay for. UHCCF grants provide financial help/assistance for families with children that have medical needs not covered or not fully covered by their commercial health insurance plan.
Kiddos Clubhouse Foundations mission is to better shape lives for children with special needs. Kiddos’ Clubhouse Foundation provides therapy scholarships to help families pay for critical therapies. Through partnerships and generous support from corporate and private donors, grants, and charitable events, we are able to relieve financial burdens and help families regain hope for their children.
The Maggie Welby Foundation offers grants for children and families that have a financial need for a particular purpose. Grants may extend to children and families in need of help with bills, athletic opportunities, medical needs, or an opportunity that a child would not otherwise have. All grants are awarded to the family, but are paid directly to the specific purpose for which the grant was applied.
Financial Resources for Equipment
Comprehensive list of all grants/assistance to help buy handicap vans and adaptive equipment in all 50 states. These grants and other programs could help you finance a wheelchair van, scooter, wheelchair lift, adaptive driving equipment, or other mobility product.
Kids Mobility Network is a 501(c)3 non-profit organization providing children with disabilities with complex rehab technology and durable medical equipment such as wheelchairs, walkers and other medical equipment. We operate our organization with caring and integrity.