Twenty three -year-old Kendell Thomas likes to spend his days watching cartoons on YouTube and speeding up music videos so that “they sound all chipmunky,” his mother Nya explains. Kendell, who is autistic, speaks with odd tone shifts and needs round-the-clock care. That's not always easy and now, just providing that care is threatening her livelihood.
Kendell receives services through the government but his dad has long been out of the picture and his 43-year-old mother, a clerk at Brooklyn’s Woodhull hospital, is his only caregiver on nights, weekends and holidays. Between caring for her son and having to negotiate the massive Medicaid bureaucracy doesn't have much time for anything else. In fact, it's kind of like a second job _ the only difference is that she doesn’t get paid to do it.
Nya's story isn't news to parents of disabled children who have long had to deal with the added cost _ both financial and emotional _ of raising their kids. Even with all the government programs dedicated to helping out _ the system is so opaque, burdensome and bureaucratic that without constant attention from a loved one, it hardly works at all. The cost in dashed careers, marriages, lost jobs and income doesn't even enter into the Medicaid numbers. Nor is the cost of the illness, physical and mental, arising from the lack of stress and holes in the care _ the gap between what is promised and what is provided. If having a disability or a loved one with a disability isn't enough of a hit _ the federal and state bureaucracy only adds serve to add insult to injury.
“I feel like they’re trying to fire me,” Nya told Ability Fierce in a telephone interview. On more than one occasion her supervisor has told her she should “put in for a transfer” and keeps nagging her to ask if she’s done it yet. Nya says her performance reviews have always been satisfactory and the issue has directly to do with her inability to take on different shifts.
When Nya was hired 19 years ago, it was with the understanding that she would only work a fixed nine to five, Monday through Friday with major holidays off. But every time the supervisor changes, she’s been forced to re-certify her son’s disability. More recently, she’s been required to do it every six months.
It’s an arduous process that requires getting a letter from Kendell’s doctor, the day program where he spends most days and from the personal care assistant whose house she drops Kendell off and picks him up, because she can't make it to work or home in time for the day program van. Then she has to fax take all the paperwork, including his birth certificate to the Family and Medical Leave Act office in Manhattan for clearance, where a promise to respond in five business days usually drags on for months - making her work situation all the more precarious.
“It’s getting so that the people at Kendell’s day program are asking why I need these letters, so often,” Nya says. Even if her employers are just following the law, Thomas thinks they need to recognize that Kendell has a chronic disability that isn’t going to change _ something the doctor is repeatedly required to state.
All the worrying about job security combined with this semi-annual process of reconfirming Kendell’s diagnosis has taken a toll on Nya’s health.
“I’ve had to go to employees' health and be sent off duty because of my blood pressure _ a blood vessel burst in my eye,” she says, adding that on another occasion her high blood pressure left her whole left side numb.
Nya went to Equal Employment Office where they
said they can only help the disabled with employment issues, their families are on their own.
She also complains that the FMLA office violated her privacy, by emailing her approval letter including her home address to ten people, many of whom she doesn’t know. She feels this is violation of her privacy.
“I get extremely emotional and overwhelmed having to deal with this harassment in addition to the everyday stressors that comes with care for a disabled child, All the while, still trying to put a smile on my face when I walk out the door," Nya says, explaining how, like many parents with severely disabled children she sometimes prefers not to think about it, even though _ or maybe because _ she’s had to deal with it for 23-years.