His Own Little Economy
Sautee, Georgia (Senate District 51)
Joe Grillo is a 16-year-old boy with spastic quadriplegia, cerebral palsy, developmental delay and visual impairment. He was born three months premature at 26 weeks. Because it was her second pregnancy, and the first had gone smoothly, his mom, Jane, says she knew something wasn’t right almost from the beginning. “I just didn’t feel good the whole time I was pregnant with Joe.” 2001 was a lousy year all around for them and for the country. Jane’s mom had died eight days before Joe was born. They watched 9/11 happen while Joe was still in the NICU. Jane displays Joe’s baby book, including his tiny diaper which is the size of what you might put on a small baby doll.
Currently Joe receives the Katie Beckett waiver and COMP waiver. Jerry and Jane are advocates for their son and for the disability community in many capacities. Jerry has written articles and created a YouTube channel about their family to help normalize their experience for others. Jane works as a Parent Mentor for the White County School System, is a job coach and also serves on statewide boards and commissions, including for DBHDD and Parent to Parent of Georgia. On this day, Jane worked as a job coach at Ingles with the high school’s community-based instruction program. On other days, Jane does trainings and support with families of students receiving education program services. Georgia is the only state in the country that has a parent mentor partnership program. The Parent Mentor job is paid for by a federal grant through the Office of Special Education Programs. (Story continues below after slideshow.)
Rebecca Obermeier, Joe’s assistant, is with the Grillos 18 hours per week in three six-hour shifts. She’s someone they’ve watched grow up in the community because she’s around the same age as their older daughter. They were delighted when she came back into their lives after school. She learned great note-taking skills from her previous work experience, so when their state support coordinator comes monthly to review goal tracking and all else, they’re always well prepared. “She also has a really great rapport with Joe,” Jane reflects. “I think it’s because she had brothers. She knows when to make a joke he likes, but she can also tell when he’s uncomfortable or upset.” Rebecca agrees, “I also had a cousin who was nonverbal, and I helped to take care of her. I don’t put much stake in the words people say; it’s their body language.”
After his snack through his G-tube, Joe takes his shoes off and gets down on the floor to stretch and relax his muscles. Rebecca takes him through a series of exercises to help him strengthen his back, lift his head, turn himself over. While people will say CP is not degenerative, it can be, especially when you have “high tone,” where your muscles are constantly contracted. After he finishes puberty, Joe will need hip surgery because his femur is slowly pulling away from the socket.
Jane offers her quick soapbox speech on equipment, showing us the bungee cord fix they had to make for Joe’s wheelchair. Always having to fight with insurance and Medicaid to get approved when Joe needs new equipment or repairs is exhausting. Joe’s current wheelchair costs about $9,000. “Our insurance company just laughs,” Jane says wryly. They still have to send the request to insurance first, so it takes about six months total to get a chair replaced.
Jane and Jerry talk about how Joe is his own little economy. They wish legislators would see investment in Medicaid waivers as something that multiplies into more spending at the local level. For every dollar Joe receives, he hires assistants, goes places and invests in other practitioners. Jerry says, “He’s the founder and chairman of JoeyCorps. Jane is the CEO. I’m the COO and CFO.” Jerry goes on to reflect that, just yesterday, an elderly man came to deliver Joe’s feeding supplies from Habersham County. “That man would not have a job if not for Joe’s Medicaid.” It’s also important to note that people with disabilities tend to stay in their communities and are loyal to their jobs.
After his “floor time,” Joe has a variety of options for after-school activities. On a nice day, he might go out and swing in his hammock while listening to music or an audiobook or watch a movie until dinner time. On this particular afternoon, he swings in the soft light under the trees listening to The Grateful Dead’s “Ripple”:
If my words did glow with the gold of sunshine
And my tunes were played on the harp unstrung
Would you hear my voice come through the music
Would you hold it near as it were your own?
Ripple in still water
When there is no pebble tossed, nor wind to blow
Reach out your hand if your cup be empty
If your cup is full may it be again.
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon