We aren’t working hard enough to keep disabled kids with their families

Disability can be shockingly expensive. At times, it really equates to a tax on being alive — people with complex impairments or chronic conditions can be spending tens of thousands annually on the things they need to function. Over a lifetime, disability adds considerably to the cost of living, even with much-vaunted (and usually inadequate) government benefits.

One group that people don’t think about is kids. The cost of raising a disabled child can be double (or more) that of raising a nondisabled kid, between a huge range of health expenses, accessibility modifications to a home, and other issues. Raising a disabled kid is costly — this is because of the way society has positioned disability, as something inherently worthless and broken.

In a culture that wasn’t rife with disablism, parents wouldn’t have to spend a fortune modifying homes and vehicles. That same culture would also ensure that everyone of all ages and all levels of ability would have access to comprehensive health benefits, including durable medical equipment, hospital care, medications, home health aides, and anything else people might need. The same culture would recognise that while loving parents may be primary caregivers, they aren’t the only caregivers, and it would acknowledge that disabled people need autonomy, and have the right to live in their own communities, rather than being trapped in institutions.

That, however, is not the world we live in, as we know. Instead, we live in a world where low-income parents can really struggle when it comes to raising a much loved disabled child, and even those of moderate income can start to flounder. Even as they fight for benefits, some parents are put in the unfortunate position of realising that they cannot afford to offer the care that their children need. Being unable to raise your children in a healthy, safe environment is devastating — and a bit humiliating, because it feels like an indictment on your parenting abilities even though the lack of a social safety net is really to blame.

With their backs against the wall, some parents are forced to make a really terrible decision: Turning their children over to the state, in the hopes that surrendering parental rights will give their children access to the services they cannot provide. The state in turn takes kids into group settings or foster homes, or sometimes puts them in nursing homes, often with older adults, in an environment that isn’t exactly enriching or fulfilling. Parents, instead of living with their children, are reduced to visiting them on a set schedule, interacting with them only fleetingly.

This is…all kinds of terrible. I can’t even begin to articulate how terrible it is. Parents are made out to be demons for not being able to take care of their kids, kids are ripped away from their homes, and everyone is miserable. Moreover, even when parents are actively advised to turn their children over because they’re out of alternatives, caring for wards is substantially more expensive than simply increasing community benefits. There’s no good reason for children to leave loving homes. At all.

Community-based care is almost always less expensive than institutionalisation, and many parents are eager for their kids to live in a community setting. Rather than paying tens of thousands every year for placement in a nursing or group home, the state could be creating an efficient method of community-based services delivery. It could be negotiating for scaleable benefits for parents of disabled children, to help them keep their kids at home. The same framework would enable disabled adults to stay out of institutions, would create a more inclusionary and diverse society by explicitly creating a space for disabled people and affirming their right to occupy it.

I cannot even imagine how awful it must be to determine that the best place for your child is with the state. The decision cannot be an easy one, even in consultation with care providers and social workers, teachers and children themselves. Yet, it’s a reflection of a society where disability is supposed to be both unseen and unheard, a place where disabled children in particular make people feel uncomfortable. They can be objects of inspiration and sweet little angels from afar, but up close, engaging with disabled children frightens people. The thought that children have needs is even more alienating for nondisabled people who would prefer that disability remain something airy and fictional, something over there. The thought that disabled people, children included, are owed social support and have a right to occupy public space is deeply upsetting, and it’s this disablism that leads to the shrinking availability of the services disabled people need to remain in their communities.

It’s fundamentally troubling that when the media report on cases where parents have to give their children up, it’s positioned as an individual problem. This child, with these parents. There’s a reluctance to engage with the larger systemic issues behind the phenomenon, to challenge the circumstances that pressure parents across the country into making a really untenable decision. Rather than making much of an individual tragedy, society ought to be doing some introspection to ask about its own complicity in the systems that keep disabled people out of the public eye, trapped in isolation.

Disability should be value neutral. Disabled people aren’t more or less worthy of social participation than nondisabled people. The needs of disabled people are not ‘special,’ and people shouldn’t treat them as though they are. They’re just needs. And living in your home with your loving parents is one of the most fundamental needs of all.

Image: Esterka II., Honza Soukup, Flickr