CLICK HERE TO JOIN OUR FREE FACEBOOK GROUP!

Direct and Indirect Cost of Having a Child With Autism

Grasp the direct and indirect cost of having a child with autism. Learn about financial planning and aid.

steven zauderer
Steven Zauderer
April 2, 2024
10 min read
min read

Understanding Autism-Related Costs

When assessing the economic impact of Autism Spectrum Disorder (ASD), it's crucial to consider both the direct and indirect costs. These expenses can have a substantial effect on the financial well-being of families, particularly those with a child diagnosed with autism.

Direct Costs of Autism

The direct costs associated with raising a child with ASD can be significant. These costs include expenses related to diagnosis, medical care, rehabilitation, and behavioral therapy. According to the NCBI, the direct costs of raising a child with ASD are estimated to be at least twice as high as the costs of raising a typically developing child.

Cost Type Estimated Annual Cost
Healthcare Costs $3,020
School Costs $8,610
Total Non-Healthcare Costs $14,061

The lifetime per-capita incremental societal cost of autism is reported to be $3.2 million in the United States. These figures further underscore the financial burden faced by families with a child diagnosed with ASD.

Indirect Costs of Autism

In addition to direct costs, families must also contend with indirect costs related to autism. These costs often involve informal care burdens and lost parental productivity. For instance, parents may need to adjust their jobs or decrease their working hours to accommodate their childcare duties. According to NCBI, the employment rate of mothers of children with ASD declined by 6%, and their weekly working hours decreased by 7 hours compared to mothers of typically developing children.

Impact on Employment Percentage Decrease
Employment Rate 6%
Weekly Working Hours 7 hours

Furthermore, it was reported that an estimated loss of employment income for parents or caregivers of autistic children accounted for 90% of the total family costs of ASD. This further highlights how the indirect costs of raising a child with ASD can significantly impact a family's economic situation.

Understanding the direct and indirect costs of autism is crucial for families, healthcare providers, and policymakers. This understanding can help in the development of supportive policies and effective interventions to alleviate the financial burden on families affected by ASD. The economic burden associated with ASD is higher compared to other diagnoses, resulting in a substantial burden on families. However, research suggests that early treatment for children with ASD can improve the children's prognosis for developing language and social skills, potentially reducing the ASD-related economic burden for the family yet more research is needed to confirm this conclusion.

The Impact of Autism on Families

The impact of autism extends far beyond the individual diagnosed with the disorder. Families, particularly those with a child with autism, bear a significant share of both financial and emotional costs. This section will delve into the direct and indirect costs, including medical and non-medical expenses, and the loss of productivity and earnings for parents.

Medical and Non-Medical Expenses

The medical and non-medical expenses associated with raising a child with autism spectrum disorder (ASD) are substantial. The direct costs include diagnosis, medical check-ups, rehabilitation, and behavioral therapy. Additionally, there are substantial indirect costs, such as the informal care burden and lost parental productivity [1].

Financial analysts predict that raising a typical child to age 18 costs upwards of $250,000. However, parents of children with disabilities like autism could incur costs as much as ten times greater.

Autism Speaks estimates that, on average, raising a child with autism costs around $60,000 a year. For a severely autistic child, expenses could exceed this amount, resulting in a lifetime expense of over $3 million.

Moreover, parents of children with autism can expect to spend hundreds of thousands of dollars on out-of-pocket fees related to equipment, medication, and care for their child, even with health insurance. These costs might continue into adulthood, necessitating plans for overseeing the child's care after the parents are no longer around [2].

Loss of Productivity and Earnings

The indirect costs of raising a child with ASD, such as the loss of parental productivity, are significant and often overlooked. An estimated loss of employment income of parents/caregivers of autistic children was reported to be 90% of the total family costs of ASD. The employment of parents is affected by their child's disorder, and parents often adjust their jobs due to childcare. The employment rate of mothers of children with ASD declined by 6%, and their weekly working time decreased by 7 hours compared with mothers of typically developing children. This decrease in work time leads to a significant loss of income [1].

The economic burden associated with ASD is higher compared to other diagnoses and results in a significant burden on families. Early treatment for children with ASD improves the children's prognosis for developing language and social skills, which means less ASD-related economic burden for the family. However, more research is needed to verify the relationship between the time interval from diagnosis to treatment and economic costs in families with autistic children [1].

In conclusion, the financial and productivity costs associated with raising a child with autism are significant, underscoring the need for societal and policy support for affected families.

Factors Influencing Autism-Related Costs

The direct and indirect cost of having a child with autism can greatly vary due to different influencing factors. Two key determinants are the severity of autism symptoms and the socioeconomic status and insurance coverage of the family.

Severity of Autism Symptoms

The severity of autism symptoms plays a significant role in determining the healthcare costs for individuals with Autism Spectrum Disorder (ASD). Those with more severe symptoms, younger age groups, and associated morbidities typically have higher medical expenditure. Therapy services, outpatient visits, and medications majorly contribute to the total direct healthcare costs of ASD as opposed to inpatient care.

The direct costs of raising a child with ASD can be at least twice as much as raising a typically developing child. ASD has been associated with $3,020 higher annual healthcare costs and $14,061 higher aggregate non-healthcare costs, including higher school costs of $8,610, compared with the costs for children without ASD.

Socioeconomic Status and Insurance Coverage

Socioeconomic status and insurance coverage also greatly impact the financial burden of families with a child diagnosed with ASD. Lack of health insurance and lower socioeconomic status are associated with higher healthcare expenditure.

Interestingly, individuals with ASD who are in receipt of public health insurance, such as Medicaid, have a lower out-of-pocket financial burden compared to uninsured and privately insured individuals.

These factors underscore the need for comprehensive health insurance coverage and financial support for families dealing with autism, particularly those from lower socioeconomic strata. These measures can help alleviate the financial stress associated with the condition and ensure that individuals with ASD receive the necessary care and support.

Assistance Programs for Autism Families

Navigating the financial landscape of autism care can be challenging. However, several assistance programs aim to alleviate the direct and indirect costs associated with caring for a child with autism. These programs include grants and government assistance options.

Grants and Programs for Autism Families

There are numerous grants and programs designed to assist families dealing with autism-related costs. Here are a few examples:

  1. Autism Care Today's Quarterly Assistance Program: This program provides direct help to families by paying a child's service provider for services they would otherwise not be able to afford, including Applied Behavior Analysis Therapy, speech and occupational therapy, bio-medical testing, supplements, assistive technologies, social skills groups, and special needs summer camps. (Autism Speaks)
  2. The National Autism Association's Give A Voice program: This program offers communication devices to individuals with autism who face communication challenges, providing them with increased safety and reducing the risk of injury or harm. (Autism Speaks)
  3. MyGOAL's Grant Award Program: This is a need-based grant for families supporting individuals under 18 years old with autism, covering treatments, nutritional needs, and educational enrichment that may not be covered by other funding sources such as school districts, insurance, or other grant-making entities. (Autism Speaks)
  4. The United Healthcare Children's Foundation (UHCCF): UHCCF provides financial assistance to families with children whose medical needs are not fully covered by their commercial health insurance plan. This helps alleviate the direct costs of medical care for children with autism. (Autism Speaks)
  5. The Pediatric Angel Network: This network offers financial and material assistance to families of children with long-term illnesses or disabilities, helping ease the financial burden caused by expenses not covered by insurance. This addresses the direct costs associated with caring for children with special needs, including autism. (Autism Speaks)

Government Assistance for Autism Care

In addition to these grants and programs, government assistance can also play a crucial role in managing the costs of autism care. Several federal and state programs offer financial support for families dealing with autism. These programs can help cover the costs of medical care, special education, and other necessary services.

Key government assistance programs include Medicaid, the Children's Health Insurance Program (CHIP), Supplemental Security Income (SSI), and state-specific programs. Eligibility for these programs often depends on factors such as income, disability status, and other individual circumstances.

Navigating the various assistance programs can be challenging, but organizations like Autism Speaks offer resources to help families understand their options and apply for assistance. It's important to explore all available resources and seek professional advice when planning for the financial aspects of autism care.

Long-Term Financial Planning for Autism

Planning for the financial future of a child with autism can be complex, involving a myriad of decisions to ensure their long-term care and security. Crucial steps include setting up special needs trusts and planning for adult care.

Setting up Special Needs Trusts

Setting up a special needs trust is pivotal for children with disabilities. It secures any money saved, gifted, or received from insurance settlements without affecting the child's eligibility for federal benefits like Medicaid and Supplemental Security Income (SSI). Even if one is unable to contribute at the moment, establishing the trust ensures that future assets won't disqualify the child from these benefits. An alternative is the ABLE account, which allows tax-advantaged savings up to $15,000 annually for disability-related expenses.

In addition, writing a will is necessary to specify how assets will be distributed after one's demise, ensuring they are left to the special needs trust and not directly to the child, which could risk their eligibility for federal benefits. In drafting the will, it's also important to designate a guardian for the child and choose a lawyer familiar with disability laws.

Moreover, separate individuals should be appointed as the guardian and the trustee. The guardian would care for the child in case of the parents' demise before the child reaches adulthood, while the trustee would manage the special needs trust after the parents' death, ensuring funds are used only for the child's disability-related needs [4].

Planning for Adult Care

Planning for adult care requires a comprehensive approach that includes building personal savings, as school systems and insurance may not cover all treatments or therapies needed by the child with disabilities. Setting aside any amount each month can help cover additional costs not catered for by other means. However, this money should not be put under the child's name.

Additionally, writing a Letter of Intent that details the child's daily routines, schedules, likes, and dislikes, as well as contact information for medical support, is crucial. This ensures the child's everyday needs are met should anything happen to the parents. Regular updates on this letter and sharing it with the appointed guardian are advised for ensuring continuity of care [4].

Lastly, understanding and utilizing financial assistance programs for individuals with disabilities can alleviate some of the financial burdens associated with long-term care. These include ABLE accounts authorized by the ABLE Act of 2014.

By taking these steps towards long-term financial planning, families can better manage the direct and indirect cost of having a child with autism while ensuring their child's future care and wellbeing.

The Importance of Early Autism Treatment

When considering the direct and indirect cost of having a child with autism, it's crucial to understand the role early treatment plays in influencing these costs. Early intervention and treatment can not only better the prognosis for the child but also significantly impact the economic burden borne by the families.

Relationship Between Treatment and Costs

A study investigating the economic costs in families of children with autism spectrum disorder (ASD) found a strong correlation between the time interval from diagnosis to treatment and the economic costs incurred by the families. In the 12-month period after diagnosis, families experienced median total economic costs of 26,502.26 RMB, and in the most recent 12 months, the median total economic costs were 29,411.91 RMB.

The study revealed that time intervals longer than 6 months were significantly associated with high direct economic costs, including inpatient/outpatient and drug costs, direct non-medical costs, and overall economic burden in the 12-month period after diagnosis. Time intervals between 4 and 6 months were significantly related to larger indirect costs in the 12-month period after diagnosis, while time intervals between 1 and 3 months were significantly associated with higher direct non-medical costs in the 12-month period after diagnosis.

Interestingly, the time interval from diagnosis to treatment was not correlated with economic costs in the recent 12 months, implying that the economic impact of delayed treatment is more pronounced in the immediate aftermath of diagnosis but may not have long-lasting effects.

Prognosis and Economic Impact

The prognosis of children with ASD is significantly improved with early treatment, leading to better language and social skills development. This, in turn, can lessen the ASD-related economic burden for the family. Shortening the time interval from diagnosis to treatment would reduce the economic strain on families, especially in the 12-month period after diagnosis [1].

However, there is limited evidence to support this conclusion, and more research is needed to verify the relationship between the time interval from diagnosis to treatment and economic costs in families with autistic children. Despite the need for further research, the existing data underscore the importance of early treatment in managing both the developmental outcomes for children with ASD and the economic impact on their families.

References

[1]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8662780/

[2]: https://www.americanadvocacygroup.com/creating-a-long-term-financial-plan-for-your-child-with-autism/

[3]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9074281/

[4]: https://kidshealth.org/en/parents/needs-planning.html

[5]: https://www.autismspeaks.org/financial-autism-support

steven zauderer

CEO of CrossRiverTherapy - a national ABA therapy company based in the USA.

Table of Contents