Raising children is expensive. Raising children with special needs is often exponentially more expensive.
According to a Brookings Institution analysis of U.S. Food and Drug Administration (FDA) data, the average inflation-adjusted cost to raise a child born in 2015 to a middle class family from birth through age 17 would be $310,605.
The expenses that makeup that figure and their relative percentages are as follows:
- Housing: 29%
- Food: 18%
- Child care and education: 16%
- Transportation: 15%
- Health care: 9%
- Miscellaneous: 7%
- Clothing: 6%
Mind you, that’s just the average cost of raising an average child through high school graduation. It does not include expenses for sending a child to college or supporting them as they transition to adulthood. Raising a child that is not average costs a lot more, and, in many cases, they will need some level of care and support for the duration of their lifetime.
Raising exceptional children comes with extraordinary expenses. Children can have a wide variety of special needs and unique circumstances, including physical disabilities, intellectual disabilities, developmental disabilities, sensory disabilities, neurodevelopmental disorders, metabolic disorders, neurological conditions, chronic illnesses, genetic diseases, rare disorders and other medical conditions.
A 2003 analysis by RTI International and the Centers for Disease Control and Prevention (CDC) estimated the lifetime economic costs associated with four common developmental disabilities as follows:
| Developmental Disability (DD) | 2003 Estimated Lifetime Economic Cost |
| Mental Retardation | $1,014,000 |
| Cerebral Palsy | $ 921,000 |
| Vision Impairment | $ 566,000 |
| Hearing Loss | $ 417,000 |
Those figures have been inflation-adjusted to reflect 2023 dollars. The terminology used to reference one of the developmental disabilities has also been updated to reflect current language:
| Developmental Disability (DD) | Estimated Lifetime Economic Cost in 2023 Dollars |
| Intellectual Disability | $1,797,147 |
| Cerebral Palsy | $1,632,320 |
| Vision Impairment | $1,003,141 |
| Hearing Loss | $ 739,063 |
In 2014, JAMA Pediatrics estimated the lifetime cost of supporting a person with both Autism Spectrum Disorder (ASD) and an intellectual disability was $2.4 million in the United States (U.S.) and $2.2 million in the United Kingdom (U.S.). It estimated the cost of lifetime care for a person with ASD without a co-occurring intellectual disability at $1.4 million in both countries. In 2023 dollars, those figures would increase to $3,012,499; $2,761,456; and $1,757,291, respectively.
There is no mention of whether comorbid conditions, such as seizure disorders or mental illnesses, were included when those estimates were calculated, so we will presume that comorbid conditions were not taken into consideration. Being a spectrum disorder that encompasses a wide range of functional capacities and support needs and can include an almost infinite number of combinations of comorbid conditions, ASD is the perfect example of how the nature, severity and manifestations of a disability or medical condition can impact its economic costs to families.
For example, a family with an adolescent or young adult child with ASD and severe comorbid challenging behaviors—such as physical aggression, self-injurious behavior (SIB), elopement or property destruction—could incur costs for emergency room visits (for the person with ASD or others they might injure), hospital stays, inpatient psychiatric care, intensive behavior management programs, a behavioral care team (BCBA, RBTs, psychiatrist, psychologist, psychiatric nurse, etc.), genetic testing, diagnostic evaluations and laboratory analyses, medications, home and vehicle repairs, and home and vehicle modifications that are far above extraordinary. If the person who has ASD also has an intellectual disability, a seizure disorder or is nonverbal, minimally verbal or unreliably verbal, they will need more, more intense and more expensive interventions and supports. The more complex a person’s needs are, the more it will cost to meet those needs.
Traumatic Brain Injury (TBI), which can cause cognitive, functional and behavioral difficulties, is another condition that can rack up staggering costs. According to Chandi Edmonds, an expert on the condition, lifetime expenses for treatment of a TBI patient can range from $85,000 to $3 million, depending on the severity of the injury and degree of brain damage it causes.
Some patients may need 24 hours of supervision at the assisted living facility or a nursing home. The cost of caring for the TBI survivors outside the hospital is staggering and can range from $600,000 to $1.9 million. According to Chandi Edmonds, the lifetime expenses of a TBI patient’s treatment can range from $85,000 to $3 million. However, there are ways to help TBI patients with the recovery process. In addition, a 1997 study estimated that the annual direct costs of TBI could range from $67,504 to $114,231. That range would be $126,934 to $214,799 in 2023 dollars.
Many factors will determine your family’s specific costs, but, regardless of the diagnosis, the primary consideration will be your child or loved one’s unique individual needs. Depending on the your child’s specific disability, illness or condition; how he or she is impacted; and what his or her actual needs are, you may incur expenses for a plethora of treatments, therapies, services, equipment or supports, such as:
- Medical Office Visits
- Dental Visits
- Medical Specialists
- Surgeries
- Emergency Room Visits
- Diagnostic Tests
- X-rays and Imaging
- Laboratory Testing
- Hospitalizations
- Inpatient Psychiatric Care
- Medical Transportation
- Medical Supplies
- Medical Equipment
- Medical Devices
- Nutrition Counseling
- Special Diets
- Vision Care
- Hearing Services
- Eyeglasses and Other Vision Enhancing Devices
- Hearing Aids
- Clinical Therapies
- Creative and Expressive Therapies
- Behavior Management Programs
- Psychiatric and Mental Health Treatment
- Medications
- Special Education
- Assistive Technology
- Mobility Aids
- Life Insurance
- Health Insurance
- Long Term Care Insurance
- Specialized In-Home Care
- Specialized Out of Home Care
- Disability Insurance
- Accident Insurance
- Hospital Indemnity Insurance
- Skilled Nursing Care
- Respite Care
- Home Modifications
- Home Repairs
- Specially Equipped Vehicle
- Vehicle Modifications
- Vehicle Repairs
- Legal Expenses
- Specialized Day School
- Specialized Boarding School
- Specialized Tutoring and Home Education Programs
- Learning Aids
If the aforementioned list appears to be endless, it becomes even more so once you add it to the ordinary expenses of living and those of raising a typical child (food, clothing, shelter, etc.) and almost unimaginably overwhelming if you have more than one child, more than one child with special needs or responsibility for caring for another family member (such as a spouse, parent, sibling, in-law or extended family member) who has extraordinary needs.
Clearly, families that have a child or other loved one who has special needs are likely to have extraordinary expenses that can exert immense pressure on the family’s finances. In addition to the ordinary financial concerns of every other family, they have the additional responsibilities of providing for the immediate, short-term, long-term and lifelong care of their child or loved one for the entirety of that person’s life, which could (and often does) exceed the lifetime of their parent and/or caregiver.
“What will happen to my disabled child or loved one?” is a question that keeps parents and family members up at night. That question, and its possible answers, is a constant source of fear, stress and anxiety for families who have a child or loved one with special needs. The sad and sobering truth is there are many layers and shades of nuance to that seemingly simple but deceptively complex and complicated question. We can arrange for potential successor guardians and caregivers—but situations and arrangements can and do change. We can, and should, make thoughtful estate plans, but we need to amass a substantial estate in order to be able to create legacy wealth to fund our loved one’s care after we have passed on.
Many of us are familiar with the FIRE (Financial Independence Retire Early) movement. While financial freedom is a nearly universal goal, those of us who are responsible for the care of a child or other lover one who will need lifelong care have to take a different path for early retirement is not the goal post for us. Our endgame is creating legacy wealth that will continue to fund our loved one’s care beyond our lifetime and throughout theirs. Instead, special needs families need to FUEL (Financial Urgency Endowing Legacy) Wealth.
From the moment we become aware that we are responsible for the care of a person with special needs—whether through the diagnosis of a child, a spouse’s life-changing illness, being declared the legal guardian of a sibling or becoming the designated caregiver of a parent–we need to begin preparing to meet the financial requirements of providing lifelong care. In order to do so, we must develop a full and accurate picture of our current financial status, determine how much we will need to pay our ordinary expenses and our extraordinary expenses, set financial goals, create a comprehensive financial plan, implement the plan and be prepared to review, revisit and revise the plan as needs evolves, assets are acquired or created, debt ratios rise and fall, and resources become available. While the process may not always be fun or easy, creating legacy wealth is both necessary and achievable with determination, discipline and good use of the tools we have available to us: goal-setting, budgeting, financial planning, saving, investing, creating and cultivating income streams, insurance products, fringe benefits, and tax breaks.
This website is dedicated to helping families with special needs FUEL Wealth to create the security and peace of mind they need and deserve.
Photo by Nathan Anderson on Unsplash