“Elbert, are you ever going to retire?” I asked one of my good friends and a co-founder of the L’Arche-Chicago Community[i]. “Nope,” he replied succinctly. We joked that when he knocks on the pearly gates in the far future, the first thing out of his mouth will be: “I’m here. You got a job for me?”
Elbert is 73 as of 2018, which is well past the age when many people with and without disabilities retire. Elbert has worked in food service at Concordia University Chicago for the past six-almost-seven years. He works a split shift—both lunch and dinner—in the student union, every Monday, Wednesday and Friday during the standard academic year. Before that, he worked five days a week, competitively, as a maintenance person as Esperanza Community Services, an organization that supports people with disabilities.
Elbert and I were sharing lunch with a young and relatively new L’Arche member, Anders. Anders, who is 27, has worked for five years at various Jewel-Osco supermarkets. Anders is rightfully proud that he started at $7.25/hour and is now paid $10.50/hour. He attributes this to the facts that he is a fast and efficient bagger, and that he always returns promptly from his breaks. Anders works up to 19.5 hours/week, sometimes as 8-hour days.
“What do you like about working?” I asked the two of them. “It’s nice; I like it,” said Elbert in the same moment as Anders jumped in with “I enjoy it; I keep busy.” When pushed a bit, they did admit that they also enjoyed the money, which allowed them to buy the things they wanted and do things like go out to eat and have recreational activities. Both work together weekly with one of their support staff members—called “assistants” at L’Arche—to make and track a budget. But I got the distinct feeling the money was a distant second to the livelihood and personal satisfaction they each got from using their gifts to make a contribution to society.
In fact, even when they are not working for wages, they are working. Both Elbert and Anders garden even though Anders admits he likes growing vegetables better than eating them. In fact, he so enjoys gardening, he also helps a neighbor. Both men also volunteer at the Oak Park food pantry, cook on rotation for and with their housemates, and clean their respective homes.
Though L’Arche is unique in many ways, members with disabilities have funding through Illinois’ Community Integrated Living Arrangement (CILA) Medicaid Waiver. Because they have worked and accumulated sufficient Social Security credits, Elbert receives Social Security Retirement and Anders receives SSDI. With the help of the assistants and the L’Arche administration, Anders is managing his income such that it remains below the Substantial Gainful Activity level of $1,180/month, which is part of the definition of having a disability. Elbert, being past his full retirement age, does not have this issue.
Both also need to meet Medicaid income requirements; however, should it be necessary, they could work more and retain their Medicaid by requesting Health Benefits for Workers with Disabilities (HBWD). HBWD allows workers, who earn too much to qualify for traditional Medicaid or even Medicaid through the Affordable Care Act (aka Obamacare), to pay a small premium and keep Medicaid as long as they require Medicaid services for the supports that allow them to continue working and that do not make enough to pay for them out of pocket.
Both Elbert and Anders are considering opening ABLE accounts. This will allow them to save money beyond the $2,000 resource limit for Medicaid Eligibility. Elbert has no big purchase in mind, but in past years, he did end up making purchases solely to keep his balance low enough and an ABLE would relieve him of that concern. Anders, a Titanic enthusiast, is interested in the fact that underwater tours to the famous wreck may be available from 2019 onward. It might take him a while to save the $100,000 for the trip, given other demands on his disposable income plus the annual contribution limits on ABLE ($15,000 from general sources plus another $12,060 from work income for working individuals who don’t contribute to an employer-sponsored retirement plan), but it’s good to have a permitted savings vehicle.
Many people with disabilities want to work and contribute but still need to retain their government benefits. With knowledgeable support, they can. Just ask Elbert and Anders, if you can catch them in one of their rare free moments. It helps if you invite them to lunch.
[i] L’Arche is an international, interfaith network of Communities in which people with and without intellectual and developmental disabilities share life. L’Arche values and announces the gifts of all its members and encourages and supports them to work inside and outside the community.