Raising a child with complex medical needs can be expensive. You may have to pay for doctor’s visits, hospital stays, medications, and more. While you are struggling to care for your child, you should not have to struggle to pay the bills.

Today, we provide you with a list of resources and organizations to help you with your financial needs.

Before you start: 

  • Talk to your child’s doctor or hospital social worker. The hospital may be able to connect you to charity programs affiliated with the hospital. Perhaps they can provide vouchers for parking or hotel rooms. Your child may qualify for a clinical trial. Most hospitals have a payment plan option if your bills are unmanageable.
  • Contact your state or local social service agencies to find out about helpful programs in your area.
  • Look through this excellent resource tool, the Patient Advocate Foundation’s National Financial Resource Directory. 
  • See our previous blog post on prescription medication and copayment assistance: Patient Assistance Programs.

If you still haven’t found the support you need, take some time to look through the list below. 

Please note that we are providing this list for informational purposes only. We cannot verify any of these programs; check out any organization carefully before sharing personal information.

The Brain Recovery Project’s Dreams for Danny: Surgical Evaluation Travel Scholarship provides up to $1,000 in approved travel funds for scholarship awardees to pursue a surgical evaluation at a Level 4 pediatric epilepsy center located in the U.S. at least 50 miles from the child’s place of residence. 

Air Care Alliance is a Volunteer Pilot Organization (VPO) that helps patients in need access distant medical care or supportive services by arranging free flights through volunteer pilots who fly their private aircraft and pay for the flight expenses.

Air Charity Network provides free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis. Air Charity Network also coordinates flights to fly organ transplant candidates, people involved in clinical trials, chemotherapy or other repetitive treatment, victims of abuse seeking relocation, families receiving help from Ronald McDonald Houses, Shriners Hospitals, or other charities, disabled or sick children to special summer camp programs, and for many other humanitarian reasons.

Children’s Flight of Hope (CFOH) provides air transportation for young patients and their families who need access to specialized medical care that might otherwise be out of reach. Often, the organization will reserve tickets on commercial airlines for the child and one adult companion to travel for treatment. On limited occasions, their resources allow for private flights for a child who is medically unable to travel on a commercial airline.

Footprints in the Sky provides flights for patients to medical facilities throughout the United States for routine, critical or life-saving care and who cannot use commercial airline service or other means of transportation because of financial constraints and medical issues.

Mercy Medical Angels provides medical transportation to vital healthcare via assistance for transportation on the ground (with gas cards, bus, or train tickets) or in the air (with flights flown by volunteer pilots or on commercial airlines).

Miracle Flights provides free flights to those in need of life-changing medical care not found in their local communities.

Operation Liftoff provides air transportation for children with a life-threatening illness for a treatment trip.

Southwest Airlines Medical Transportation Grant Program provides complimentary roundtrip tickets to participating nonprofit hospitals and medical transportation organizations.

ACT Today! provides grants for children with autism for Applied Behavior Analysis Therapy, speech and occupational therapy, biomedical testing, supplements, assistive technologies (such as iPad or communication apps), safety equipment (safety fencing, GPS tracking devices, or autism service dogs), social skills groups, special needs summer camps, and more.

Alyssa V. Phillips Foundation provides financial support to those impacted by cerebral palsy to access therapy and equipment.

ASDF Social Skills Camp partners with autism organizations that offer social skills summer camps and provides scholarships for families who need financial assistance to send their children to camp.

The Association of Blind Citizens operates an Assistive Technology Fund, which provides funds to cover up to half of the cost of adaptive devices or software. 

CARE Family Grant Program helps children with autism or suspected autism by providing autism diagnosis/evaluation, medication, therapy (including speech, OT, and ABA), and autism-focused summer camps. Funds are paid directly to the vendor or service provider to pay for tuition, supplements, medication, medical evaluation, testing, therapies, etc.

Cerner Charitable Foundation provides funding for individual children with health-related needs when insurance and other financial resources have been exhausted.       

Danny Did Foundation provides grants for intervention devices for children and adults with epilepsy. 

Easter Seals provides grant funding for technology programs and services, including assistive technology and augmentative communication systems. 

Friends of Disabled Adults and Children provides durable medical equipment (DME) such as wheelchairs and hospital beds at little or no cost to individuals with disabilities and their families. 

Friends of Man provides children in need with grants for mobility equipment, prosthetics, glasses, dentures, hearing aids, and more.

Fund it Forward provides funding for needed medical devices or equipment (such as augmentative communication devices, bath and feeding chairs, enclosed beds, sensory equipment) for any person who has a diagnosed disability or medical condition.

The Glenn Garcelon Foundation provides need-based grants up to $1,000 for all patients living with a primary brain tumor.

Giving Angels Foundation awards grants for life-changing equipment, medical supplies, essential family bills, specialized camps, and therapeutic toys for a child with a physical disability from a lower-income family.

HealthWell Foundation Pediatric Assistance Fund provides financial assistance to eligible families so their children can start or continue critical, often life-saving medical treatments. This unique fund assists children 18 years old or younger living with chronic or life-altering conditions that their families are struggling to treat due to cost.

Hemispherectomy Foundation: Provides college tuition and camp fees to qualifying applicants.

The LGS Foundation‘s mission is to improve the lives of those affected by Lennox-Gastaut Syndrome (LGS) through research, family support programs, and education. Their Elevate  Patient Assistance Program assists individuals with LGS to help pay for durable medical equipment not covered through insurance or other programs. These funds can cover helmets, wheelchairs, orthotics, cooling vests, weighted blankets, adaptive bikes, communication equipment, or seizure alert devices (provided in partnership with Danny Did Foundation).

Mission4Maureen assists brain tumor patients and their families by paying bills such as rent, mortgage, utilities, car payments, insurance, taxes, medical bills, credit cards, loans, and more. 

Modest Needs Foundation provides emergency grants to those at risk of slipping into poverty and for whom no other source of immediate help is available.

The M.O.R.G.A.N. Project stands for Making Opportunities Reality Granting Assistance Nationwide. Morgan’s Legacy Gift provides “tools” not considered medically necessary by insurance and Medicaid but significantly impacts the parent’s ability to be the safest caregiver and best advocate for their child that they can be.  

The National Autism Association’s Give A Voice program provides communication devices to individuals with autism who are non-verbal or minimally verbal and whose communication challenges put them at increased risk of injury or harm.

The Ray Tye Medical Aid Foundation funds in-hospital life-saving medical treatment and surgeries for those who do not have medical insurance or other available financial resources.

Small Steps in Speech provides grants on behalf of children with speech and language disorders for therapies, treatments, communicative devices, and other services to improve their communication skills.

Sunshine Foundation answers the dreams of ill, physically disabled, or abused children. Dream requests may include a family trip to Disney World or other Orlando theme parks, a celebrity meet and greet, a family trip, a shopping spree, or adaptive medical or therapeutic equipment.

The UnitedHealthcare Children’s Foundation (UHCCF) provides medical grants to children under age 16 to help them access health-related services not covered (or not fully covered) by their family’s commercial health insurance plan. Families can receive up to $5,000 annually per child ($10,000 lifetime maximum per child) and do not need to have insurance through UnitedHealthcare to be eligible.  

Tyler Foundation: provides meal gift cards to families of children who are patients at Children’s Hospital Boston or UMass Memorial Children’s Medical Center, gas cards to be used by families who are transporting children to doctor’s appointments and hospital visits related to epilepsy, financial assistance for the purchase of therapeutic equipment used in the treatment of children suffering from the delayed development caused by the brain malformation and seizures, purchasing ketogenetic diet supplies including scales and required books, bridging the gap for fixed expenses including electricity bills, rent, and car insurance.

Variety: The Children’s Charity has three programs (all grants can go to individual children or the organization providing the service or equipment): 

  • Variety’s Care Program delivers medical equipment and services. Care grants may cover cochlear implants, hearing tests and aids; orthodontics and braces; feeding systems and specialized nutrition; oxygen, suction, and insulin pumps; nebulizers and ventilators; vision care like eye tests and corrective equipment; sensory equipment; prosthetics and orthotics; respite care; electrical stimulation devices and seizure alarms; and more.
  • Variety’s Freedom Program delivers equipment and services for mobility, independence, and social inclusion. Freedom grants may cover wheelchairs, adaptive bicycles, and trikes; assistance animals; hoists and lifts; modified vehicle access; standing and walking assistance like gait trainers, walkers, standing frames, and positioning systems; specialized car seating, shower, and toilet chairs, and more.
  • Variety’s Future Program provides communication equipment and services, education, and self-esteem. Future grants may cover communication technology and devices; scholarships in education, the arts, and music or sports; sports wheelchairs; adaptive sports programs; camps and retreats; early literacy programs and learning aids; after school programs; performance groups for disabled children; outings, parties, experiences; and more.

Wheelchairs 4 Kids provides wheelchairs, home & vehicle modifications, and other assistive and therapeutic devices for children with limited mobility.

Aubrey’s Warriors Foundation is a non-profit organization whose primary goal is to assist families with emergency funding for transportation assistance, medical treatment, therapies, and rehabilitative equipment. 

ChildCare.gov Services for Children with Disabilities provides links to state parent training and information centers (PTI) and community parent resource centers (CPRC) which offer support and training to parents of children with disabilities. These centers can help connect you to local financial and medical resources.

Community Action Agency staff can connect you with any available resources, financial or otherwise, that are available in your area

Modest Needs makes “Self-Sufficiency Grants” that assist working individuals and families who live just above the poverty level and may be ineligible for conventional social assistance but are one or two paychecks away from financial catastrophe.

NeedHelpPayingBills.com lists many sources of financial assistance; see their state listings to find out what is available in your state.  

The Salvation Army can provide rental and housing assistance, utility help, food, shelter, and more. You can find your nearest Salvation Army center here.

The United Way can provide emergency support on many levels. Call 2-1-1 to be connected with services and resources, or visit 211.org.

ARCH National Respite Network and Resource Center helps families locate respite and crisis care services in their communities.

Believe In Tomorrow Children’s Foundation provides hospital and respite housing services to critically ill children and their families. 

Children’s Wish Foundation allows families a respite from hospital or treatment life. 

Ronald McDonald House Charities is a network of local Chapters that has been making children happier and healthier by keeping families close during hospital stays.

It’s important to know whether your child qualifies for the following federal benefits:

Medicaid and CHIP (Children’s Health Insurance Program) can help with medical bills if you do not have health insurance.

  • Medicaid is a joint federal/state program that helps with medical costs for some people with limited income. If you make too much money to qualify for Medicaid based on your income, your state may disregard your income if you have a child with a qualifying disability. This is called a waiver. Check to see if there is a waiver program in your state. (Some state waiver programs have long waiting lists, so it’s essential to get on the waiting list as soon as possible). If you or your child are eligible to receive Medicaid, there may be emergency services available or other supports and services.
  • The Children’s Health Insurance Program (CHIP) provides health insurance to children whose families cannot afford private insurance but make too much money to qualify for Medicaid. Contact your state Medicaid/CHIP agency or visit InsureKidsNow.gov.  

Medicare: many people with disabilities are eligible for Medicare; if your child is over 18 and receives SSI, they can receive Medicare.

Supplemental Security Income (SSI) is available for children with health conditions and disabilities such as cerebral palsy, blindness, deafness, down syndrome, intellectual disability, muscular dystrophy, HIV, infants with low birth weight, or babies/toddlers who are failing to thrive, and more. This program provides a monthly income for the individual.

Social Security Disability Insurance (SSDI): People who become disabled before age 22 can receive Social Security Disability Insurance (SSDI) if:

  • one of their parents is currently receiving Social Security benefits or is deceased, 
  • but worked enough to qualify for Social Security. 

These SSDI “child” benefits can continue to be provided throughout adulthood as long as they meet income restrictions. 

Supplemental Nutrition Assistance Program (SNAP) provides food benefits for those who meet household eligibility requirements.

Temporary Assistance for Needy Families (TANF) is temporary financial assistance for low-income parents to care for their children. 

Do you have a resource to add to this list? Email us at info@brainrecoveryproject.org and we’ll include it here.

about the author

Audrey Vernick is our Director of Patient and Family Advocacy. She is the parent of a child who had hemispherectomy for seizures caused by stroke. She holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates and is certified by The ARC in future planning. She also serves on the International League Against Epilepsy’s Social Work and Social Services Section.

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