Easing their burden: How we can do so much more for children with disabilities

Recently, the Boston Globe did a series on abuses of Social Security payments to children with mental health problems. Reading about the families in the series, and the challenges they face, made me think about a woman named Olga who was part of our family for a few months in 1996.

Olga was a home health aide, a big, soft woman with a soothing sing-song voice and a peaceful smile. She came every weekday morning to help care for our severely disabled baby, Aidan. Aidan was born with lissencephaly, a major brain malformation. While we hauled 5-year-old Michaela and 3-year-old Zack out of bed and got breakfast into them and clothes onto them, she held Aidan and fed him, slowly and carefully, stopping occasionally to suction his mouth if he spit up. While we put Michaela and Zack in the car and took them to preschool, and ran to the grocery store or to the drug store to pick up medications, Olga washed Aidan and dressed him. While we picked up toys and unloaded and loaded the dishwasher and washed and folded laundry, Olga held Aidan and talked to him, comforting him through seizures, easing him into sleep. She stayed until we picked Michaela and Zack up from their half-day program, and then she kissed Aidan goodbye and left us until the next day.

Those hours with Olga were crucial for us. Aidan’s needs were intense and unpredictable; after Olga left each day, we played life by ear. And the crazy part is that Aidan’s disability alone didn’t qualify him for home health aide services. We were able to have them through our hospice benefit, because Aidan was at risk of dying soon—which he did, within a few months. If Aidan’s seizures and choking spells had been a smidge less severe, daily life would have been nearly impossible.

The vast majority of my patients with disabilities have nobody like Olga.

Even with Olga, either my husband Mark or I had to be no more than a few minutes away in case he had a really bad seizure or choking spell. Aidan was not a baby who could go to daycare, not with his seizures, medications and home therapies. I worked part-time, and Mark, a respiratory therapist, worked nights and weekends around my schedule so that one of us was always home. We were lucky that our jobs gave us the flexibility to do this.

Most people don’t have that flexibility. Most of the families of my disabled patients are living off of one income—or government assistance.

“The medications and therapies and appointments are hard; the parents of my disabled patients sound more like nurses than parents sometimes.”

Having a disabled child is hard. I don’t just mean hard emotionally, although it’s absolutely hard emotionally. I mean day-to-day life is hard. It’s hard to make a living. It’s hard to go places, whether it’s because your child needs a special seat or wheelchair van, or because his disability or behavior makes being places like grocery stores difficult. If you need equipment, like a communication board or a walker, it can take weeks or months of paperwork and waiting. The medications and therapies and appointments are hard; the parents of my disabled patients sound more like nurses than parents sometimes. Raising your other children is hard, when so much attention needs to go to the disabled child. Nearly everything in life, from the big to the small, gets complicated.

Don’t get me wrong: we loved Aidan fiercely, and never for a moment did we wish we didn’t have him. He was a beautiful, worthy child; every child is beautiful and worthy. But we couldn’t help wishing he’d been born well and whole, without any disabilities. We were—and are—grateful for Aidan’s existence, and the lessons he taught us. But we didn’t ask for life to be so hard, for him or for us.

Nobody asks for life to be hard. I think of this often when I am caring for my disabled patients. Some are physically disabled, like Aidan. Some have mental health problems, which can be just as disabling, and make life just as complicated. Many of my patients are poor, adding a whole other layer of difficulty to their already difficult lives. As it was for us when Aidan was alive, caring for my disabled patients means climbing one obstacle after another.

I do what I can. I spend a long time with them each time they come, as patients pile up waiting to see me. I write letters and fill out forms for school, employers, transportation, medications, medical supplies, support services, landlords, and utility companies. I talk to specialists, teachers, mental health providers, school nurses—trying to build a net to hold them and support them. It helps, but it’s not enough. These children need so much more. They need caseworkers that can devote the hours it takes to find creative solutions to problems. They need ready access to health insurance that covers all of their medical expenses, not just most of them. They need education—given in a way and in a setting that works with their disability. Their families need support, both emotional and financial. None of this is available easily. It all costs money, which means that getting anything requires a fight. Families get worn down, especially when the message is often that they are asking too much. They aren’t.

Nobody asks for life to be hard, and every child is beautiful and worthy. It frustrates me that we as a society can’t seem to grasp these simple facts and rise to the occasion. It shouldn’t be so hard for these children, and these families, to get what they need to make it through each day. There will always be people who abuse the system, but focusing on that misses the point.

Mahatma Gandhi said that a nation’s greatness is measured by how it treats its weakest members. I can’t think of anyone weaker than a disabled child, especially one who is poor. It would cost us money to care for them well, but as a nation we’ve spent lots of money to be great in other ways.

This would be real greatness—and worth every penny.