Material Hardship

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. 

Anderson, K. A., Radey, M., Bishop, L., Aguirre Mtanous, N. G., Koenig, J., & Shea, L. (2024). Material hardship and sources of support for autistic adolescents and their families. Autism, 0(0). https://doi.org/10.1177/13623613241304503

Lay abstract:

This exploratory study used the Future of Families and Child Wellbeing Study (FFCWS) to compare the financial well-being of families of adolescents with and without autism. Recognizing the gap in autism research, which predominantly measures financial well-being through household income, this study employed a multidimensional approach, including indicators of assets, material hardships, and both formal and informal safety net access. We found that families with autistic adolescents experienced greater financial instability, including a higher likelihood of substantial income drops and bankruptcy. Despite similar access to food assistance programs, food insecurity was notably higher among these families, especially in the lowest income brackets where nearly all families utilized food assistance. Furthermore, material hardship prevalence (46.4%) exceeded income poverty (29.8%), among families with autistic adolescents. A substantial proportion of middle- to high-income families also experienced hardships, had no assets, and lacked connection to safety net programs, suggesting that income-based metrics may not fully capture the financial challenges families face. The findings highlight the need for policies that acknowledge the broader financial needs of families with autistic adolescents, underscoring the inadequacies of current support systems.

From the article:

Our study found significant financial instability in families with autistic adolescents, who faced a higher likelihood of substantial income drops and were almost twice as likely to declare bankruptcy compared with families with non-autistic adolescents. Challenges uniquely exacerbated by the demands of autism care, including employment disruptions and high service expenditures, may contribute to the greater risk of experiencing substantial income drops and increased likelihood of bankruptcy, especially for single-parent households (McAuliffe et al., 2017). Despite these challenges, these families reported less access to liquid assets, such as the ability to secure loans or cosigners, compared with their counterparts. This economic volatility underscores the critical need for policies focused on asset accumulation and strengthening informal support networks to better support these families’ financial stability. Interestingly, while high food insecurity remains a severe issue, families with autistic adolescents do not face greater risks regarding bill-paying and utility hardships compared with other families. This difference may be linked to the higher rates of SSI/SSDI receipt among autistic adolescents compared with those without autism, despite families of autistic adolescents receiving lower annual payments than their non-autistic counterparts. However, the high prevalence of food insecurity amid low bill-paying hardships suggests a targeted need for programs specifically enhancing food access.

ASD Adults and Financial Skills

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

A release from the University of Missouri:

More than 3 million people in the United States are estimated to have an autism spectrum disorder diagnosis and annual diagnosis rates continue to rise. Researchers from the University of Missouri have found when teenagers and young adults with autism enter adulthood and age out of many of the services designed to help them, they often are anxious about how to handle new adult responsibilities such as paying bills and filing taxes. These findings highlight the importance of incorporating financial management into early education to empower young adults with autism.

Nancy Cheak-Zamora, assistant professor in the School of Health Professions, led a research team that conducted interviews with individuals with autism between 16 and 25 years old. Through the interviews, the researchers identified common themes regarding adulthood and financial skills.

“Most of the participants saw a definite association between adulthood and handling money,” Cheak-Zamora said. “Participants agreed that independence required managing finances and all expressed frustration in their own abilities when it came to knowing how to handle and use money. According to the participants, the lack of financial skills has serious consequences on their ability to assume adult responsibilities.”

This new research highlights the importance of implementing financial management programs early and tailoring them to the specific needs of people on the autism spectrum. Researchers suggest that financial management and literacy need to become an integral part of social services and education.

“Despite the importance of financial autonomy and the increased independence that comes from understanding money, financial management and decision-making often are seen as outside the purview of professionals working with young people with autism,” said Clark Peters, co-author of the study and associate professor in the MU School of Social Work. “Educational programs that include financial literacy in both schools and independent living programs could increase autonomy and quality of life for people with autism.”

Cheak-Zamora and Peters suggest that parents and caregivers can help by providing skills and encouragement. They say helping children with autism pay for items at a store and setting up bank accounts can provide the confidence needed to understand financial matters. They also suggest that financial institutions should play a role in helping customers with special needs, such as providing dedicated phone lines to assist consumers.

“Financial capabilities among youth with autism spectrum disorder,” recently was published in the Journal of Child and Family Studies. Michelle Teti, associate professor of health sciences, and Anna Maurer-Batjer, a graduate student in the School of Social Work also co-authored the study. Research was supported by the U.S. Army Medical Research Acquisition Activity and the Assistant Secretary of Defense for Health Affairs through the Autism Research Program. The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding agencies.

Focus Groups Look at Programs for Autistic Adults

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Kaitlin H Koffer Miller, Mary Mathew, Stacy L Nonnemacher and Lindsay L Shea have an article at Autism titled Program Experiences of Adults with Autism, their Families, and Providers: Findings from a Focus Group Study."  The abstract:

A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices.

From the article:

This study has important implications for delivery of services to adults with ASD broadly. Staff, families, and adults with ASD identified training as a top priority. Areas of training needs identified are largely reflective of evolving research on adults with ASD. Supporting individuals across the spectrum of needs was a recurrent theme in the focus groups and reflects the existing literature base on the vastly different service needs between individuals with ASD, especially among those with and without ID (McCarthy et al., 2010; O’Brien and Pearson, 2004).

A powerful question that came up in focus groups with families and with participants was: what will happen to an adult with ASD after their parent, caregiver, guardian, or other essential family member passes away? According to the 2011 PA Autism Needs Assessment, 56% of parents and caregivers had no long-term plans for their child (of all ages) after they are no longer able to care for them. This statistic is startling given that of the adults with ASD sampled, about 77% live at home with their family or caregiver (Bureau of Autism Services, Pennsylvania Department of Human Services, 2011b). Another report replicated these results, finding that about 80% of adults with ASD have been reported to be living with their parent/caregiver and have no long-term plans or options for independent living or community integration (Reagor, 2010). Engaging in the long-term planning process is invaluable to avoid crises when adverse life events occur, such as the death of a caregiver.

Financial Planning for Families

At Fox News, Jennifer Cerbasi writes about financial planning.  She quotes AXA financial consultant Bruce Maier on guardianships:

"Parents may not be ready to have that conversation," but, he added, by planning and putting some of the pieces in place, "You can approach the potential guardian and say 'I know this is a difficult thing to assume, but I've made some financial arrangements that may make the situation more comfortable.’"

Though financial planners and insurance agents know their products well, it's the parent of the child with ASD who truly knows the ins and outs of daily life. To that end, Maier suggests that in addition to any legal documents and plans families may put in place, parents write a letter of intent, documenting all the details of caring for their child with special needs, including medications, daily schedules, and favorite toys, movies, or activities.

"For example, if every time Johnny goes to the pediatrician, he gets a red lollipop -- and it has to be red -- that can really make or break a situation," said Maier.

Knowing that many children with autism follow specific schedules or have very unique preferences, a letter of intent, though not a legal document, may ensure vital information is passed on to those now caring for the child.

Douglas O. Baker of Los Angeles, California, is a Special Needs Advisor and, like Crawford, is a father of a child with ASD. Baker said parents should to work with someone they trust, as he has come across his share of professionals who don't necessarily have the child's best interest in mind, or don't listen to the family’s needs.

"Parents have to be wary of agents poaching special needs families, simply trying to sell a product,” said Baker. “Families drop their policy after a year because it didn't make any sense."