Breaking the Bank: The Hidden Costs of Raising a Child with a Disability
Rainbow colored graphic of people with both visible and invisible disabilities
A sobering fact: families with a disabled child face significantly higher costs compared to those raising children without disabilities. On average, it costs about 17.8% more income per year to care for a child with special needs. Some estimates suggest that raising a child with a disability can cost up to $2.4 million over a lifetime, compared to $176,000 to $407,000 for a child without disabilities.
The annual costs can vary widely depending on the specific needs of the child:
For children with autism, expenses may exceed $60,000 per year.
On average, it costs four times as much to raise a child with special needs compared to a child without disabilities.
Families typically pay an average of $100 per week out of pocket for general costs related to autism spectrum disorder (ASD).
These increased costs are due to various factors, including:
Frequent doctor visits and therapy sessions
Expensive medical equipment (e.g., wheelchairs costing up to $25,000)
Specialized care and education
Adaptive equipment (4-6 pieces on average per child)
Special foods and clothing
Additional transportation expenses
Higher childcare costs for specialized care
It's important to note that these costs can vary greatly depending on the specific disability, severity, and available support systems. Many families struggle to cover these expenses, often relying on loans, credit cards, and retirement savings to meet their children's needs.
Budget for Respite Care
Parents and caregivers can’t pour from an empty cup — they need to be able to practice self care. Practicing self care is easier said then done, but it important for caregivers to take care of themselves so that they are able to care for the children in their lives. This, of course, is easier said than done — and rings especially true for parents of children with disabilities who have support needs because caring for these children presents a unique set of challenges for couples, that without adequate strategies, resources and support can be completely draining emotionally, physically, and spiritually. Coordinating time to rest and get a break can also be expensive and logistically tricky to find someone trustworthy to care for one’s loved one that may require specialized care. Ensuring that parents have access to respite, even if just for an afternoon a few times a year, is money well spent. One mutual aid option is for families with children who have similar disabilities to trade caregiving services. This way, each can get a break cost-free. Additionally, some may be able to ask a family member to pitch in with care.
To better support families of autistic children, several key areas can be addressed:
Expand financial assistance programs: Increase funding and accessibility for government programs like Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), and implement more flexible income thresholds to allow more families to qualify for assistance.
Enhance educational support: Provide additional resources for schools to offer specialized education and therapy services within the school system. This could include increased funding for speech therapy and occupational therapy.
Improve healthcare coverage: Advocate for much better insurance coverage of autism-related treatments and therapies, reducing out-of-pocket expenses for families.
Increase community support: Develop more local support groups and community centers that offer resources, workshops, and respite care for families of autistic children.
Expand grant opportunities: Create more grant programs to help families cover critical expenses related to autism care.
Implement tax benefits: Introduce additional tax credits and deductions specifically for families with autistic children to help offset the high costs of care and treatment.
Develop ABLE accounts: Promote increased utilization of ABLE (Achieving a Better Life Experience) accounts. ABLE accounts empower families to save money for disability-related expenses without eliminating eligibility for government benefits.
Provide employment support: Offer job training and employment assistance programs for parents of autistic children, helping them balance work and caregiving responsibilities.
Enhance caregiver support: Implement programs that provide emotional and practical support for caregivers, including counseling services and respite care options.
Improve public awareness: Increase education and awareness about autism in schools, workplaces, and communities to foster a more inclusive and supportive environment for autistic individuals and their families.
By implementing these measures, we can create a more comprehensive support system for families of autistic children, addressing their financial, emotional, and practical needs.
Sources: Social Security Office of Retirement and Disability, American Advocacy Group, A Day In Our Shoes