Parenting

How Much Caring For A Child With Special Needs Costs A Family On $85,000 a Year

Raising a child supposedly costs you a quarter of a million dollars, but it can honestly be more daunting to face the idea of spending $80 on bottle nipples in a single month. Expense Report gives us a look into the spending, scrimping, and wishing that defines parenthood, from what moms spend on birthdays, to childcare, to sleep, to self-care (we wish!), and beyond.

When you're responsible for a child with special needs, the bills can total up quickly, and families are oftentimes hit with unexpected — and really big — expenses. One parent shares what those costs look like for their family over the course of a typical year.

Family: A mother, step-father, and three children.

Location: Jackson County, Oregon

Annual Income: $85,000

Children: Three (ages 15, 12, and 6)

Jennifer’s first child, Brayden, was in distress in utero just before a traumatic delivery; he wasn’t expected to live more than 2 days after birth. Brayden survived beyond those 2 days (he's currently 15 years old) but sustained a traumatic brain injury, and he was later diagnosed with both Spastic Quadriplegia Cerebral Palsy and Cystic Fibrosis. From birth, Brayden has needed the support of a team of medical professionals, complementary therapies, medications, adaptive devices and equipment, and more.

Brayden is fortunate: Not only does he have the love and support of two households (Jennifer and Brayden’s father share custody; 6 nights a month are spent at Dad's, the rest of the time with Mom), he is also doubly insured and receives ongoing financial support from the lawsuit his family won against the hospital where he was born. Having multiple financial sources significantly offsets the costs of Brayden’s needs.

Health insurance

This comes to $1,300 a month for their family of five — not too out of the ordinary, but take note of which of Brayden’s expenses are covered by insurance and which are not.

Insurance rate for one year of coverage: $15,600

Doctors’ visits, hospitalizations, surgery, & medications

Covered by insurance? Yes

Some years, Brayden is lucky enough not to need any surgery and requires few to no hospitalizations. But during a year when a surgery or hospitalization is needed — especially if Brayden has to be airlifted to a hospital — the expenses quickly climb above the $100K mark.

$17,600-$124,000 a year to cover medical expenses

Specialists & therapy visits

Covered by insurance? Yes & No

The majority of Brayden’s visits to medical specialists and therapists, such as physical therapy, are covered by insurance. However, two of the therapies that have been most beneficial to him — the Anat Baniel Method (ABM) and Hippotherapy (or Equine Therapy) — are not. Brayden travels to another state for ABM, which costs about $2,000 for a week of treatment. Hippotherapy costs about $150-$200 per month.

Anywhere from $3,000-$10,000 a year to see specialists

Brayden, participating in Hippotherapy. Image courtesy of Brayden's mom, Jennifer

Transportation to and from medical appointments

Covered by insurance? No

When Brayden was younger, he was on a state health plan, which paid for gas and hotel expenses for his appointments. However, Jennifer didn’t discover these benefits until a year after he started on the plan. This is a lesson Jennifer wants to pass along to other parents: Be proactive and find out what is available to you in your city and state, because no one will spell out these benefits for you. “You’ll need to do the work of discovering them for yourself," she says.

Transportation total: $5,000

Equipment

Specialized food & feeding equipment

Covered by insurance? Yes

Brayden relies on a gastrostomy tube, or G-tube, for feeding. Over the course of a year, he will need G-tube supplies such as a new Mic-Key button (the port for the feeding tube) which requires changing every 3-4 months, and new tubes. Brayden’s G-Tube diet consists of a special formula that is easier to digest and added lipids to increase his calorie intake, both of which incur an additional cost to the family.

Subtotal: $3,000

Adaptive Devices

Covered by insurance? Partially

Brayden uses a switch-activated book reader and several other switches to interact with toys and his environment. Insurance covers the cost of some of the adaptive devices that Brayden relies on.

Subtotal: $2,000-$3,000

Vehicle Adaptations

Covered by insurance? No

The family purchased an RV to make long road trips, which makes travel more comfortable for Brayden and holds the equipment needed for his care. Brayden’s family appreciates that having an RV makes camping — and the occasional fishing trip — possible for everyone. In 2020, the family purchased a modified van with a wheelchair ramp; Brayden’s wheelchair straps into the middle of the van. Prior to using the modified van, a parent or caregiver would transfer Brayden from his wheelchair to a car seat. Now 15, Brayden is getting too big for a car seat, so the new van was necessary to transport him safely.

Subtotal: $70,000

Brayden, enjoying his family’s new van. Image courtesy of Jennifer

Home Accessibility Modifications

Covered by insurance? Yes

For Brayden’s comfort and safety, the family purchased a hospital bed to use at home. In the near future, they know they will need to remodel Brayden’s bathroom and living area, as he is becoming too heavy for his parents and caregivers to lift. This remodel will likely involve a zero-entry shower so he can roll his wheelchair in, and ceiling straps to lift him out of bed. Jennifer does not yet know the cost of this remodel, but she is in the process of consulting Brayden’s doctors on bathroom adaptations.

$13,000 for a hospital bed

Educational Supports

Covered by insurance? No

Tools like iPads and flashcards are a common purchase to support Brayden’s learning.

Supplies to supplement learning: $1,000

At-Home Caregiving Services

Covered by insurance? No

Brayden’s family knows that they are fortunate to have ongoing financial assistance from the lawsuit they won after his traumatic birth. Without this financial trust, at-home caregiving services would need to be scaled back significantly.

Cost for at-home care: $120,000

Legal Assistance

Covered by insurance? No

These fees are primarily related to the management of Brayden’s trust, as expenses for the trust must be filed by an attorney annually. Families who do not rely on a trust may not need to pay this much for legal assistance.

Lawyer fees: $20,000 or more

Life Insurance

If a child with special needs relies solely or primarily on his or her parents for care and financial support, then it’s important for the parents to put a life insurance policy in place. While it’s not a pleasant reality to face, Jennifer wants to make sure that Brayden will be taken care of for his lifetime, even after she or Brayden’s father pass away.

$40,000 for life insurance and some peace of mind

Other Expenses

Covered by insurance? No

For kids like Brayden who deal with incontinence, diapers and wipes are an ongoing expense. Chronically dry lips mean purchasing lots of Chapstick. To address Brayden’s stiff muscles, pain, and discomfort, the family makes regular use of diffusers, essential oils, and CBD and hemp creams. Other bodily functions and discomforts require the occasional purchase of butt paste, laxatives, and eye drops. For Brayden’s postural support and comfort, the family has bought special seats and pillow type beds, pregnancy pillows, and blankets. To keep Brayden protected and equipped outdoors, his parents have bought an umbrella for his wheelchair and a wheelchair bag. Brayden’s high muscle tone causes his feet to curve outward, which means he needs to wear special shoes that zip, which are often more difficult to find than typical shoes. And for Brayden’s personal entertainment and interests, the family buys lots of movies and sensory toys.

One of the expenses that has surprised Jennifer the most has been shopping for Christmas gifts for Brayden. Because he can’t interact with toys the way a typical child might, Jennifer has to seek out toys that light up, have switches, or otherwise provide the interactivity for him. Otherwise, she has to adapt toys, often by adding switches to them, so he can play with them on his own.

Range for additional miscellaneous supplies: $1,000-$20,000

All totaled, the yearly expenses for Brayden’s care can range from $312,700 on the low end to $446,600 on the high end, depending on hospitalizations, home and vehicle adaptations, and other equipment purchases.

If you're the parent of a child with special needs, check out thebrainpossible.com for resources and information on a variety of different pediatric neurological conditions, treatment options for those conditions, and to find practitioners of complementary therapies that can benefit your child.