Financial Resource Toolkit for LGS Families

The following list contains links to third-party websites. The LGS Foundation 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

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 Lennox-Gastaut Syndrome (LGS), 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 LGS.
Download Understanding and Navigating Medicare
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.
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.
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.
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.  

Medical Financial Assistance

Every state’s Medicaid and Children's Health Insurance Program (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.
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.
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.
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.
Co-Pay Assistance Premium Assistance Program Contact: 1-855-864-4028 Email: Fax: 1-203-614-1713
(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.
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
Sometimes, financial constraints make it impossible for parents and caregivers to cover their child’s medical expenses. Cerner Charitable 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 | Cerner Charitable Foundation
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.
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.
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.
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.
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.
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.

General Financial Assistance

Our mission is to enhance the daily functioning of a child with a physical disability from a lower income family by awarding grants for life-changing equipment, medical supplies, essential family bills, specialized camps, and therapeutic toys. We classify special needs as those children under the age of 21 with any type of physical disability. $500 maximum one-time grant allowance per recipient family. $50,000 maximum annual income threshold.
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 Tuition & Therapy Assistance Program offers scholarships ranging from $1,000 to $5,000 to help ease the financial burden of therapeutic treatments and intervention for autism. To be eligible, the child must be between the ages of 12 months and 18 years of age and must have already received a clinical diagnosis of Autism Spectrum Disorder. These awards may be used for behavioral intervention programs, occupational therapy, speech therapy, social skills groups, special needs schools, and/or special education programs. Apply for Assistance – KNOWAutism Foundation (

The Special Interest Fund was established to help children with autism access adaptive and inclusive programs and services that do not fall under the umbrella of traditional autism treatments or interventions. Awards range from $500 to $1,000 per child. Eligible programs include specialized camps, music therapy, art therapy, yoga therapy, therapeutic horseback riding, adaptive swim lessons, and similar programming. This fund may also be used to cover fees for the services of autism/disability advocates (up to $1,000). Apply for Assistance – KNOWAutism Foundation (

Financial Resources for Equipment

The LGS Foundation’s Elevate Patient Assistance Program provides financial assistance to individuals with LGS to help pay for durable medical equipment not typically covered through insurance or other programs. The Elevate Patient Assistance Program is open to residents in the United States. The maximum lifetime allowance per family is $1,500. Each family may apply for one award, covering up to three items. Learn More
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.
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
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.
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.
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.
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.