Financial Resources Home — KCNT1 Epilepsy Foundation

Financial Resources

The following list contains links to third-party websites. KCNT1 is not responsible for the content or privacy policies of these external sites. While we try to only list sites here that we feel contain useful information for our families, a listing here should not be construed as an endorsement for any products or services they may provide.

Financial Planning

Navigating SSI and SSID

Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) both pay benefits to people that the Social Security Administration deems disabled. SSDI requires you to have enough work credits while SSI is on a financial needs basis. When faced with KCNT1, families strive to provide the best care possible for their loved ones to live comfortably. With medical and other living costs building up, facing financial stress can sometimes be inevitable. Social Security Disability benefits are suitable for individuals with KCNT1.

Download Understanding and Navigating Medicare

Navigating Special Needs Trust

The primary purpose of a special needs trust is to enhance the quality of life of the beneficiary with a disability. Special Needs Trusts preserve current and future eligibility for two important government benefits: Medicaid and/or Supplemental Security Income (SSI). When properly drafted and administered, a special needs trust will allow your beneficiary to receive funds from the trust while continuing to receive government benefits.

ABLE Account

An ABLE account, is a state-run savings program for eligible people with disabilities in the United States. Achieving a Better Life Experience (ABLE) accounts allow the families of disabled young people to set aside money for their care in a way that earns special tax benefits. When an individual dies, funds remaining in the ABLE account, after the payment of outstanding Qualified Disability Expenses (which may include funeral and burial expenses), may be used to reimburse the state for Medicaid-related services.

www.ablenrc.org/

Financial Planning Toolkit

All parents worry about their children’s futures. But for parents of children with special needs, the worry can be even bigger. Mapping out your child’s financial future can seem daunting but having a plan can help ease your fears. This tool kit will provide you with essential information and guidance to develop a plan.

www.autismspeaks.org/tool-kit/financial-planning-tool-kit

Financial Advocay in RARE

Financial advocacy resources for rare adults of all ages to assist in things like navigating financial hardship, insurance, medical care difficulties, and access to healthcare.

resource-hub.globalgenes.org/kb/section/22/

Medical Financial Assistance

Supplemental Security Income (SSI)

Supplemental Security Income (SSI) provides monthly payments to people who demonstrate a financial need as well as a disability. SSI is for adults or children who are disabled. The monthly amount will depend on financial resources, housing, property/vehicles the person or family own, and other factors. KCNT1 families are encouraged to contact the Social Security office to determine if their child is eligible for SSI.

www.ssa.gov/ssi/

State Medicaid and CHIP Program

Medicaid provides health coverage to adults, children, pregnant women, elderly, and disabled people. The Children’s Health Insurance Program (CHIP) provides health coverage to eligible children. Medicaid is funded by the federal and state government. CHIP is funded by the state according to federal guidelines. Each state’s program is changing and improving, so KCNT1 Foundation encourages families to check the link above for the latest for their state’s latest Medicaid. Each state is different in how they implement the Medicaid program and eligibility requirements. It is very important that families check with their specific state Medicaid office for details.

https://www.medicaid.gov/state-overviews/index.html

How to Make Your Health Insurance Work for You

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.

https://www.youtube.com/watch?v=cZEmt4eyaHQ

Kids Waivers

Medicaid waivers are Medicaid programs for disabled individuals who need additional services, wrap around services, uninsured, or services that go beyond traditional insurance. The idea for waivers is to allow disabled people to live in their community while still receiving the resources and services they need. There are many waivers such as the Kate Beckett and the Home and Community Based Waiver. Each state has their own Medicaid waivers, so it is important to contact your state’s Medicaid program for details. Some waivers have long waitlists, so it is vital to reach out as soon as possible.

https://www.kidswaivers.org/

Title V Programs for Kids with Special Needs

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.

https://mchb.tvisdata.hrsa.gov/Home

Good Rx

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.

https://www.goodrx.com/

Needy Meds

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.

http://www.needymeds.org/

NORD Rare Care Assistance Program

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.

https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/

The Patient Advocate Foundation

(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.

A national 501 (c)(3) non-profit charity that provides direct services to patients with chronic, life threatening and debilitating diseases to help access care and treatment recommended by their doctor.

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.

http://www.patientadvocate.org/

Chive Charities

Chive Charities is committed to championing the underdogs. Targeting three specific causes: rare medical diagnoses, first responders and veterans, we spread awareness through sharing the personal stories of grit, courage, and perseverance. What sort of help does Chive Charities provide to recipients? Therapy equipment & sessions not covered by insurance, Handicap accessible home & car modifications, Mobility items, Purchasing of developmental & learning devices, other medical needs as recommended by a medical professional.

Apply for a Chive Charities Grant — Chive Charities

Oracle Health Foundation

Sometimes, financial constraints make it impossible for parents and caregivers to cover their child’s medical expenses. Oracle Health Foundation accepts individual medical grant applications for medical needs from the United States and through select international providers. Expenses Covered: Treatment: Clinical procedures, medicine, therapy, prosthesis, etc., Equipment: Wheelchairs, assistive technology equipment, care devices, hearing aids, etc., Displacement: Lodging (only if charitable housing is unavailable), gas ($0.33 per mile), parking and transportation related to a child’s care, Vehicle modifications: Lifts, ramps and transfer boards.

Request Funding | Oracle Health Foundation

Patient Services Inc

Founded by a patient for patients, we know the challenges of chronic illness. We’re here to help pay for your medication, provide health insurance premium and copay assistance, navigate health insurance plans, give legal advice, and be there every step of the way.

https://www.patientservicesinc.org/

Partnership for Prescription Assistance (PPA)

You have enough to worry about right now. Figuring out how to pay for your prescriptions shouldn’t be another stressor. For decades, PhRMA has been committed to advocating for policies that help patients access the medicines they need, but today, America’s biopharmaceutical companies are individually expanding their programs to help more patients during these uncertain times. MAT, the Medicine Assistance Tool, matches patients like you with resources and cost-sharing programs that may help lower your out-of-pocket costs, whether or not you have insurance.

https://medicineassistancetool.org/

Healthwell Foundation

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.

www.healthwellfoundation.org/patients/

United Healthcare Children’s Foundation

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.

www.uhccf.org/

Kiddos Clubhouse Foundation

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.

www.kiddosclubhousefoundation.org/eligibility-guide

Pediatric Epilepsy Surgery Alliance

Many families struggling with financial issues find it difficult to obtain a surgical evaluation at a hospital far from home. Airfare, ground transportation, and lodging costs can add up when your child needs several days of video EEG monitoring, imaging, and other tests. This is why Dreams for Danny was created – to help families afford travel and lodging associated with an epilepsy surgery consultation. Funded by a very generous donation in honor of Danny, a young boy who needed subtotal hemispherectomy to stop his seizures, this new program provides up to $1,000 in approved travel funds for scholarship awardees.

epilepsysurgeryalliance.org/dreams-for-danny-surgical-evaluation-travel-scholarship/

General Financial Assistance

Keep Swimming Foundation

Keep Swimming Foundation is an organization that offers non-medical financial aid to families experiencing long term inpatient hospital stays. Keep Swimming Foundation wants families to have the opportunity to stay together when their loved one is in the hospital long term. The loved one must be in the hospital for over 21 days to qualify. A nomination for the financial aid must be provided by a nurse, case worker, or physician involved in the patient’s care. Applications can be found on the Keep Swimming Foundation website.

www.keepswimmingfoundation.org/

Kelly Anne Dolan Memorial Fund

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.

www.dolanfund.org/

Supplemental Nutrition Assistance Program (SNAP)

Supplemental Nutrition Assistance Program (SNAP) provides food benefits to supplement a family’s food budget, so that they can obtain nutritious and healthy foods for their household. State income guidelines are unique to each state, so please seek out your state’s requirements.

www.fns.usda.gov/snap/supplemental-nutrition-assistance-program

Temporary Assistance for Needy Families (TANF)

Temporary Assistance for Needy Families (TANF) provides a temporary monthly benefit to families with children who are low income as well as a wide range of other services.

www.acf.hhs.gov/ofa/programs/temporary-assistance-needy-families-tanf

Financial Resources for Equipment

Danny Did Foundation

While no device has been proven to prevent epilepsy-related mortality (including SUDEP), the Danny Did Foundation (DDF) is devoted to seeking out seizure detection and seizure prediction devices – as well as other technologies – that are designed to enable intervention by a caregiver. Intervention is believed to reduce the risks that accompany epilepsy. If you are seeking funds to help with the cost of a device, review and research the products at Danny Did and then complete the application.

www.dannydid.org/mobile/epilepsy-sudep/devices-technology/

Small Steps in Speech

Provides grants on behalf of children with speech and language disorders for therapies, treatments, communicative devices, and other services aimed at improving their communication skills. Small Steps in Speech will accept applications on behalf of children between 3 and 22 years of age at the time of the application deadline and families with a combined household income under $100,000.

www.smallstepsinspeech.org/grant-application/

The Orange Effect Foundation

The Orange Effect Foundation empowers children and young adults with speech disorders to effectively communicate through technology and speech therapy.While there are many wonderful organizations that focus on autism and research into speech disorders, there are very few that focus on providing grants to children who desperately need consistent speech therapy or equipment.

theorangeeffect.org/grant-application/

Wheelchairs 4 Kids

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.

wheelchairs4kids.org/

The Mobility Resource

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.

www.themobilityresource.com/financing-handicap-accessible-vehicles/state-grants

Kids Mobility Network

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.

www.kidsmobility.org/families/

Lili’s Lift

Lili’s Lift is a not-for-profit organization that seeks to empower and assist children with disabilities (as well as their families, friends and communities) through education, advocacy and volunteer opportunities. How do we do that? With your help, we provide the capital, building materials, and in-kind donations necessary to achieve one-time home renovation projects that will significantly assist children with disabilities and their families.

lilislift.org

Chive Charities

Chive Charities helps veterans, military families, first responders, and those with rare medical diagnosis. Chive Charities will provide a grant that can be used for therapy and medical items that are not covered by insurance, mobility items such as adaptive/ADA vehicles and adaptive strollers, and home modifications.

chivecharities.org/recipient

Giving Angels Foundation

Giving Angels Foundation provides a one time grant that can be used for life changing equipment, medical supplies, essential family bills, specialized camps, and therapy toys. Applicants must show a financial need as well as a physical disability to qualify.

www.givingangelsfoundation.org/apply-for-help/

Thank you, LGS for curating the important content.

https://www.lgsfoundation.org/financial-resource-toolkit