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.

Disabilities, COVID, and Food Insecurity

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

From Mia Ives-Rublee and Christine Sloane at the Center for American Progress:

The pandemic burdened the disability community even more severely. The U.S. Census Bureau’s COVID-19 Household Pulse Survey data from March 2021 revealed that 55.7 percent21 of disabled Medicare recipients under the age of 65 reported not having enough food or not having access to the foods they wanted. Additionally, the U.S. Department of Agriculture (USDA) calculated that, in 2020, disabled adults faced food insecurity at more than twice the rate22 of their nondisabled counterparts—with nonworking disabled adults three times more likely to be food insecure than nondisabled adults—due to the numerous adverse impacts of the pandemic. These additional challenges include concerns among disabled people who are at higher risk of COVID-19 complications about the increased risk of exposure that comes with shopping in person at the grocery store,23 as well as difficulties with food delivery programs such as financial strains and inconvenient delivery times.24

21.Carli Friedman, “Food insecurity of people with disabilities who were Medicare beneficiaries during the COVID-19 pandemic,” Disability and Health Journal 14 (4) (2021), available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8436149/.

22.US Department of Agriculture Economic Research Service, “Interactive Charts and Highlights,” available at https://www.ers.usda.gov/topics/food-nutrition-assistance/food-security-in-the-us/interactive-charts-and-highlights/#disability (last accessed November 2021).

23. Kendra Crighton, “Immunocompromised community call for more options to get groceries during COVID-19,” Nanaimo News Bulletin, April 6, 2020, available at https://www.nanaimobulletin.com/news/immunocompromised-community-call-for-more-options-to-get-groceries-during-covid-19/.

24. Melissa L. Caldwell, “Why people with disabilities are at greater risk of going hungry during the pandemic,” PBS News Hour, May 7, 2021, available at https://www.pbs.org/newshour/health/why-people-with-disabilities-are-at-greater-risk-of-going-hungry-during-the-pandemic.

Autism and Food Insecurity

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

Arun Karpur and colleagues have an article at Autism titled "Food insecurity in the households of children with autism spectrum disorders and intellectual disabilities in the United States: Analysis of the National Survey of Children’s Health Data 2016–2018."  The lay abstract:

Families of children with autism spectrum disorder are more likely to experience financial strain and resulting food insecurity due to additional cost of care, disparate access to needed services, and loss of income resulting from parental job loss. Utilizing nationally representative data, this analysis indicates that the families of children with autism spectrum disorder and co-occurring intellectual disabilities are twice as likely to experience food insecurity than families of children without disabilities after adjusting for various factors. Several factors, ranging from state-level policies such as Medicaid expansion to individual-level factors such as higher utilization of emergency room services, were associated with the higher prevalence of food insecurity in families of children with autism spectrum disorder and co-occurring intellectual disabilities. Implications of these findings on programs and policies supporting families in the COVID-19 pandemic are discussed.

Disabilities and the Defeat of the Farm Bill

In The Politics of Autism, I discuss health care issues and social services for people with intellectual and developmental disabilities.

The Autism Society and other disability groups strongly opposed the Farm Bill, mainly because of its provisions on SNAP, aka food stamps.  The bill went down 198-213. A statement from House Democratic Leader Nancy Pelosi mentioned the role of disabilities:

On a bipartisan basis, the House rejected a bad bill that failed farmers and working families.  Republicans wrote a cruel, destructive Farm Bill that abandoned farmers and producers amid plummeting farm prices and the self-inflicted damage of President Trump’s trade brinkmanship.  Their heartless bill would have slashed $23 billion in SNAP benefits for children, seniors, students, 1.5 million veterans, 23,000 servicemembers, individuals with disabilities and working families.

CAP on SNAP

In The Politics of Autism, I discuss health care issues and  social services for people with intellectual and developmental disabilities.

From the Center for American Progress:

The proposed Farm Bill would force SNAP recipients to fill out an onslaught of paperworkin order to track and report their work-related activity from month to month. Currently, most states request paperwork along these lines every six months. For individuals who fail to properly submit this monthly documentation, sanctions under the draft Farm Bill are particularly punitive: They may lose SNAP benefits for 12 to 36 months. That is up to three years without food assistance for just two paperwork-related errors, such as failure to document all of one’s hours worked in a given month—which could be in multiple jobs—or a failure to submit the documentation on time.

While this paperwork would be labor-intensive for any participant, it may be especially difficult to navigate for people with certain intellectual and developmental disabilities or mental health conditions. People with disabilities are also at risk for a years-long lockout simply because they did not understand that they were eligible for an exemption; were ineligible for an exemption under SNAP’s very narrow definition of disability; or were unable to provide the necessary documentation—such as physician testimony or medical records—to prove that they qualified for an exemption. This last hurdle is especially problematic for those who lack health insurance or live in one of the 18 states that have not yet expanded Medicaid under the Affordable Care Act. Disabled workers are also more likely to be self-employed than nondisabled workers, and documentation of self-employment is particularly burdensome.

SNAP and Disability

In The Politics of Autism, I discuss health care issues and  social services for people with intellectual and developmental disabilities.

At Factcheck.org, Robert Farley discusses a proposed work requirement for the Supplemental Nutrition Assistance Program, aka food stamps

Republicans say: Individuals with disabilities are exempt from the proposed work requirements, so none of them would lose SNAP benefits under the GOP plan.

Democrats say: The bill does not account for people with disabilities or chronic conditions who lack the necessary medical exemption or documentation, and, they say, those who can’t navigate the exemption process will lose SNAP benefits.

The facts: The bill specifically exempts from its work requirements those who are “medically certified as mentally or physically unfit for employment,” same as the current law.

[Henry] Connelly, a spokesman for Pelosi, said the bill’s new reporting requirements will present hurdles for “people with disabilities who struggle to meet that exemption already.” Obtaining this documentation can be very difficult, he said, “especially for those who want to avoid the risk of being permanently ‘unfit’ for work instead of temporarily, or live in states where they do not have access to health coverage or their state does not provide access to transportation, personal care services, employment services, and more.”

“It may seem simple to assert that ‘people with disabilities will be exempt,’ but converting such a statement into an effective policy process is complicated, expensive, and fundamentally flawed,” the group Consortium for Citizens with Disabilities wrote in a letter sent to the House Committee on Agriculture. “Many people with disabilities receive SNAP, but do not meet SNAP’s statutory definitions of ‘disability’ or have not been so identified. Under SNAP, states have no obligation to help people prove they are exempt, even if they have difficulty obtaining the necessary records or verification from a doctor.”

As an example, the group points to a survey of SNAP participants in Franklin County, Ohio, which found that among able-bodied adults without dependents — those subject to work requirements/time limits — a third self-reported “some type of physical or mental limitation.”

“New reporting requirements would create major hurdles to benefits,” the Consortium for Citizens with Disabilities wrote. “Proposed new reporting requirements related to eligibility, employment and training, and time limits would be extremely difficult for many people with disabilities to navigate and comply with.”

Food Boxes

In The Politics of Autism, I write:

Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings; extreme food selectivity; and sleep disorders. For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.

Helena Bottemiller Evich reports at Politico:

The Trump administration is proposing to save billions in the coming years by giving low-income families a box of government-picked, nonperishable foods every month instead of food stamps.

White House OMB Director Mick Mulvaney on Monday hailed the idea as one that kept up with the modern era, calling it a "Blue Apron-type program" — a nod to the high-end meal kit delivery company that had one of the worst stock debuts in 2017 and has struggled to hold onto customers. Mulvaney said the administration’s planwould not only save the government money, but also provide people with more nutritious food than they have now.
...
The idea that USDA would provide millions of low-income people packages of food on a national scale has not been floated by conservative think tanks, promoted by industry, or sought by previous administrations. Murtaugh said the concept was developed internally at USDA. Mulvaney on Monday credited Perdue for it during a briefing at the White House.

"Secretary Perdue wanted to give it a chance," he said. "We thought it was a tremendous idea."

Numerous questions remain, such as how these boxes would be customized for, say, a family that has a child with nut allergies — or for those who don't eat certain types of meat out of religious or personal reasons. The proposal was so out of left field that some anti-hunger advocates initially thought it was a joke.

Autism presents another problem for such a scheme.  Some low-income families have autistic children.  Most autistic children have problems with food selectivity.  They not just "picky eaters" like many typically developing children. They cannot tolerate certain kinds of foods and often subsist on an extremely narrow diet. Marci Wheeler writes at Indiana University:

Many parents of children on the autism spectrum struggle with their child’s severe eating problems with little or no professional help. In part, this is simply due to the limited number of specialists dealing with eating and feeding disorders. Furthermore, within this limited number of specialists there are few that have much understanding and experience with children who have autism spectrum disorders. A frequently suggested strategy for many children with eating and feeding disorders involves withholding food until the child is hungry enough to eat. This approach has been shown to be dangerous and not appropriate for a child on the autism spectrum. Unfortunately, professionals as well as concerned family members and friends mistakenly blame parents of children with autism spectrum disorders for their child’s poor eating habits. Sometimes parents’ concerns are ignored and they are told not to worry since most children go through stages of picky eating and food fads.

 The Trump scheme would mean that many of these kids would go hungry.

Autism and Food Stamps

WRTV in Indianapolis reports:

The family of an Indianapolis man with autism is suing the state's social services agency, saying it illegally cuts grocery benefits it pays to developmentally disabled people enrolled in a Medicaid program based on how much they receive in food stamps.

The American Civil Liberties Union of Indiana filed the lawsuit against the Family and Social Services Administration on behalf of 26-year-old Michael Dick last week in Marion County Superior Court, 6News' Derrik Thomas reported.

Dick has been severely autistic since birth, is nonverbal and functions on the level of a 6- or 7-year-old, his family said.He's enrolled in Indiana's Developmental Disabilities Waiver Program and receives food stamps from the federal government.

But his family claims that when the federal program increased its benefits by $1.25 a day in 2009, the state deducted that same amount from his living allowance.

Talk About Curing Autism looks at food stamps from a different angle, calculating how to afford a gluten-free, casein-free diet on a very limited budget.