It’s not uncommon for me to receive calls from people who are angry because they have been trying for years to get on disability but keep getting turned down.
That’s what made a recent call unusual.
The call was from a woman named Linda Adams, who has a daughter named Jodi.
Jodi, it seems, has Russell-Silver syndrome, a congenital condition in which the body fails to grow at the normal rate. It’s called failure to thrive.
As a result, most people with the syndrome are significantly shorter than 5 feet.
Their fingers are also short and slightly twisted, and some suffer from developmental disabilities.
That’s the way it is for Jodi. She was a special-needs student through high school. She’s 44 now.
Jodi could go on disability, her mother says, but there’s a problem. The doctor her daughter had for years closed his practice, and her medical records were lost. That lack of records makes getting disability more difficult.
But that’s not what Linda Adams was calling about.
Even though Jodi has this syndrome and a developmental disability, Jodi has always worked. She does environmental services, her mother said, such as cleaning, making beds, sweeping floors, emptying the trash. She has worked in hospitals and other places.
I worked at Lincoln Life right out of high school, Jodi said. She rolled silverware in napkins for Biaggi’s and worked for a business that cleaned offices, she said.
She’s learned to be independent. She has her own place a few blocks from where her parents live. She has always lived close to where she worked and is able to drive, though she limits her travels to a small area.
A little more than a year ago, Jodi lost the job she’d held for about 12 years. Now she’s looking for a new one. It’s difficult enough for anyone to find a job right now, let alone someone with a developmental disability.
She always had a job because I knew somebody, Linda said. But now we’re retired, and we don’t know anyone, or the people we knew have died.
After more than a year out of work, times are getting hard, Linda said. She tried to get her daughter food stamps, But she said, Don’t make me do that,’ Linda said. She tried to take her to the food bank, but Jodi said, I’m not going there.
She doesn’t want assistance. She wants to work. She wants to be independent because she knows her parents won’t be around forever, her mother said.
Jodi said she doesn’t want to get food stamps or other assistance if she doesn’t have to.
Jodi doesn’t know how many places she’s applied for jobs in the past year. She’s applied for some while accompanied by a job coach from Anthony Wayne Services.
No one even calls, Jodi lamented. Why? I have no idea, she said.
That’s what Linda Adams called about. How can she find work for her daughter?
If someone shows Jodi how to do something, she can do it, Linda said. Jodi even asked whether she could volunteer somewhere, just to prove herself, but she can’t get her foot in the door, her mother said.
I just need some help, and I don’t know where to go, Linda said.
It’s an unusual twist. Here’s someone, quite possibly eligible for benefits, who doesn’t want them.
She wants to work.