Disabled children cost more — and not for the reason you think

Let me tell you about my favorite research study

“(Parents of disabled children) were often compelled to reconstruct and renegotiate every aspect of their lives.” — Dobson, Middleton, Beardsworth (2001)

Does everyone have a favorite scientific study, or is that just me? 

In the course of researching my book, I found a study that spoke to my soul. It is 20 years old and from another continent, but I have yet to find another that so perfectly captures the experience of being a medical mama. 

It is also depressing how little has changed in a generation.

Titled “The impact of childhood disability on family life,” the U.K. researchers got 273 parents to give feedback about both the economic and emotional costs of raising children with extraordinary medical needs.

All children impact their parents. But for parents of children with significant disabilities it is to another — and unanticipated — degree. Even parents who already have children find adjusting to a child’s medical challenges to be just as acute a shock as those new to parenting entirely.

Researchers found evidence that “suggests that parents were often compelled to reconstruct and renegotiate every aspect of their lives.”

I love that line. I find it to be so true. 

Medical parents have to greet the challenges of every new day with creativity, grace and extra resources. How can my child cut out a heart for Valentine’s Day? What if he has been so frustrated by previous failed attempts at using scissors that he doesn’t even want to try? How can I turn this into a win for him? It often takes mental effort to navigate even the smallest challenges in our day.

As I wrote a few Sundays ago, most families take an income hit when they have a disabled child. So, we already have less income. But we also have more expenses. 

Before I was a medical mom, I thought stuff like wheelchairs and therapy were probably the biggest difference in cost for those families. 

But now I know it’s everything. Everything is more expensive in Special Needs World: special clothes, toys, learning materials, food, cleaning supplies, laundry needs, nonmedical equipment, accessible vehicles, extra transportation costs to appointments, entrance fees to indoor activities, special equipment for outdoor activities, the list goes on.

It’s not the child’s fault, of course. Children need what they need and parents’ job is to provide it for them. But these items to tend to be costly and certainly require an extra mental load.

Children with disabilities are harder on their clothes and shoes, or they need special ones that you can’t find just anywhere, or they need more of them because of the frequency of toileting accidents. 

They also need more toys or additional household items. Why? Sometimes it’s too difficult to take them to traditional children’s activities, so they spend more time in the house. Often, it takes trial and error to figure out what toys work for their particular abilities. Or maybe it’s because they are more challenging to occupy for a few minutes while their parents get dinner ready.

Ironically, the researchers found that medical equipment (like wheelchairs) are actually not a big part of the extra expense because there is often funding for that narrow aspect of life.

Overall, the study found that parents of kids with disabilities spend twice as much on their children’s needs than parents of nondisabled children. By category, parents of disabled children spent more in all of them but two: Christmas presents and vacations. Did you get that? Let me say that again: Parents of disabled kids on average spend more than their typical counterparts on everything — housing, clothing, food, etc. — except the fun stuff.

But what I really love about this study is that they went beyond just the economic impacts of raising a disabled child:

“The statement that echoed through all 36 of the group discussions was: ‘I’m not the same person anymore.’ Many explained that before their child was born they had been relatively quiet and reserved; they did not challenge authority and accepted what they were told; they were relaxed, had lots of friends and had ‘a sense of fun.’ Since finding out their child was severely disabled, their personalities had changed. Some parents described themselves as aggressive, pushy, stressed and obsessive. These changes did not happen instantly and most parents did not welcome them, with some stating they did not like who they had become. But experience had shown parents that these changes were necessary if they were going to do their best for their child.”

Sooner or later, parents encounter ableism. They find out that if they want their child’s needs met, they sometimes have to fight. And then we learn that fighting has its own consequences  — now you are That Mom. It’s this weird feedback loop of prejudice, painting us and our children into a corner.

“…parents resented their lack of control and argued they had no choice but to change in order to obtain the help their child required. While many were now very driven and determined individuals, all said they were tired and exhausted. Although all the parents loved their children, some were overwhelmed by responsibility. In their experience, it was up to them, and them alone, to ensure everything possible was done to help.” (Dobson, Middleton, Beardsworth, “The impact of childhood disability on family life,” 2001, Pg. 31)

For anyone who dismisses their findings because “it’s just one study” — yeah, you’re right. Here are a bunch of other articles that echo the same point. But I haven’t yet found a recent quality study in America on this topic.

So maybe one fine day, Joseph Rowntree Foundation study, you will be tossed off your pedestal. Until then, you… you complete me.

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What I’m reading this week

A round-up of news for parents of disabled children.

• From The New York Times’ Opinion section: David Axelrod: When It Comes to People Like My Daughter, One Size Does Not Fit All

I am profoundly grateful for the disability rights movement that has waged a decades-long battle to shutter such institutions, many of which were run by the states, and to win for people with intellectual disabilities the right to live in small apartments and homes with services in residential neighborhoods.

But now the ideal has hardened into dogma: All larger communities are bad. All small, neighborhood-based group homes are good.

Of course, neither of these things is true, and the rigidity of that thinking denies the simple truths that there are good and bad places, large and small, and people with disabilities are not all the same. Like anyone else, they have different personalities, capacities and preferences.

• From a press release from Sen. Sherrod Brown (I couldn’t find a quality news article about it): Brown leads senators in introducing historic legislation to update long-neglected Social Security program to ensure older adults & people with disabilities are no longer trapped in poverty

The SSI Restoration Act would:

  • Raise SSI's sub-poverty-level monthly benefits, currently $794 per month, to 100% of the federal poverty level--a 31% increase--and index them to inflation;

  • Update and index the assets individuals or couples may have up to $10,000 and $20,000, respectively. The current limit of $2,000 for an individual and $3,000 for a couple has not been updated since 1989;

  • Update and index SSI's income rules -- which have never been updated since the program was signed into law in 1972. These reforms will allow individuals to earn up to $399 a month from working, and up to $123 a month in assistance from other sources: including Social Security, veterans’ benefits, and pension payments without being subject to a benefit reduction. 

  • These reforms will reward, not penalize, SSI recipients who want to earn additional income to provide for themselves and their families;

  • Eliminate the marriage penalty and increase the benefit for married couples to double the individual rate, to put marriage equality within reach for SSI beneficiaries; and

  • Eliminate benefit reductions that penalize beneficiaries who receive in-kind help from friends or family, such as groceries or a place to stay.

• From The New Yorker: Britney Spears’s Conservatorship Nightmare

The idea that Spears needs this conservatorship to function is, to some degree, self-reinforcing. In that respect, experts said, her case is common. Martinis, the disability-rights lawyer, said that many guardianships can prove inescapable, which is why they are vulnerable to abuse. In the extreme cases, he said, “the strategy is isolate, medicate, liquidate. You isolate them, medicate them to keep them quiet, liquidate the assets.” If a conservatee functions well under conservatorship, it can be framed as proof of the arrangement’s necessity; if a conservatee struggles under conservatorship, the same conclusion can be drawn. And if a conservatee gets out, and stumbles into crisis or manipulation—a likelihood increased by time spent formally disempowered—this, too, might reinforce the argument for their prior legal restraints. “Our mistakes make us who we are, and teach us who we can be,” Martinis said. “Without bad choices, we can’t be wholly human. And with the best of intentions, we say to people with disabilities: we’ll keep you from ever making a mistake.” He added, “Should Britney get out, just watch. The first mistake she makes, fingers will wag, and people will say this would never have happened if she were under guardianship.”


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