Health care | Politics | Visual Arts

The Stone Soup Dance

As funding for disability programming comes under threat, service providers get smarter

Monika Neuland teaches a class at the Rose Center. Neuland manages large amounts of donations to cope in a chronically underfunded human services sector. (Jason Schumer)

The back room of Envision Unlimited’s Rose Center, in Back of the Yards, is piled to the proverbial ceiling with arts and crafts materials: boxes of old lace, a package of sequined hats, a children’s doll whose head had, at some point in its transport, become decapitated from its body. Sorting through it all is Monika Neuland, a social practice artist, educator, and consultant who works with agencies that provide services for those with physical and developmental disabilities. Envision Unlimited, the organization which owns the Rose Center, is one of these. The arts supplies are a donation that will help sustain the various arts programs that Neuland leads around the Chicago area, including the mask-making workshop taking place here in the Rose Center.

Neuland has made a career out of working with physically and developmentally disabled people. But quite a bit of her job is doing just this: coordinating the drop-off and distribution of donations, which are necessary supplements for the arts programming she runs. “Managing all the donations and pickups is a challenge,” she says. “It’s a big part of what I do.” In the chronically underfunded human services sector, she tells me that “this is how I’ve stayed alive.”

The vast majority of the supplemental enrichment arts programming that Neuland directs—like today’s mask-making workshop—are developmental training programs embedded in the Home- and Community-Based Services (HCBS) Medicaid Waiver, through which eligible service providers can bill the Illinois Department of Health for their costs; in turn, the federal government allows states like Illinois to spend Medicaid funding on these services. One of the purported advantages of the HCBS Waiver is its open-ended status: the federal government is obligated to help states pay for home- and community-based services, as long as those services don’t cost more than institutional care (like a hospital or nursing home). This ostensibly eliminating the potential for triage decision-making on the part of the state.

But that may change soon, as the new presidential administration orients its healthcare policy in a different direction. Days after the inauguration, presidential advisor Kellyanne Conway announced the administration’s goal to “block grant” the Medicaid funding structure. It’s an idea that’s been largely embraced by conservative legislators, even before Trump’s administration.

Block granting would essentially predetermine the amount of federal funding a state could receive annually, regardless of actual costs throughout the year. True to form, conservative lawmakers have highlighted the decision-making freedom such a reform would afford states. Neuland—whose programs are in large part underwritten by Medicaid Waiver funding—thinks about it differently: “It’s a tricky way to do a funding cut,” she says. “It’s a bait and switch.” And hers are not the only programs that rely on the Medicaid funding: Mark McHugh, CEO of Envision Unlimited, says that nearly all of Envision’s services are embedded within Illinois’s waiver system as well.

But Neuland is unfazed. After over fifteen years of this work, she’s a veritable expert at making a lot out of a little—what she calls the “stone soup dance”—having consistently developed her programming in the context of constrained funding. After all, underfunding in the human service sector is no new beast: McHugh says that Illinois’s Medicaid funding has remained stagnant for a decade, despite rising costs across the board. So, service providers, whether individual or organizational, have turned to other means to ensure the ongoing quality of the programs they offer. Neuland, for one, has relied on donations of reused and recycled art materials, like the ones she’s sorting at the Rose Center. As a result, her art programs have flourished, even when the agencies with whom she works lack the means for all of the necessary supplies.

Neuland and McHugh talk about other strategies that have worked for both of them: namely, space sharing and forming partnerships with other local organizations in order to pool resources. Even this is a break with how things were done just ten years ago.

“In the past, people were very regimented about resource management and who goes with who,” Neuland says. But Neuland regards these newfound community connections as the silver lining of underfunding. “With the funding crisis especially, people now know that there are just these others ways that stuff can get done, and will get done.”

Both she and McHugh talk in particular about a partnership formed between ZeroLandfill, a volunteer-run organization that diverts materials found in landfills toward educators and community artists, and Envision Unlimited, resulting in a biannual giveaway of art supplies staffed in part by the physically and developmentally disabled clients of Envision. More than being coping mechanisms, strategies like these allow the organizations involved to achieve their missions to a degree never before possible. In the aforementioned partnership, ZeroLandfill is able to pursue the social and environmental dimensions of its mission, while clients of Envision are included in the community by volunteering in the biannual event. “We have people who are now integrated into the community in ways they never thought they had the opportunity to do,” McHugh says.

So for both Neuland and McHugh, the ways in which they’ve dealt with underfunding in the context of the HCBS Waiver have actually improved the quality of the services that they provide to their clients. “This isn’t about, you know, we’re going to scrape by and give the minimum to the individuals who use our services,” McHugh says. “This is about thriving in a challenging environment.”

Individual and organizational service providers like Neuland and Envision Unlimited have made important strides in helping their clients live integrated and self-directed lives, all in the context of stagnant funding. Neuland spoke with optimism about the indelibility of the work that she’s doing. In reference to the mask-making workshop, which will culminate in a Mardi Gras celebration at the Rose Center near the end of February, Neuland spoke of the future: “If you do this job right, at a certain point, there are many situations that I should be able to exit left stage, and this festival will still be going on. Ten years from now, this Mardi Gras thing should just be established.”

But McHugh emphasized that creative practices and collaboration can only do so much.

“The funding challenges that exist right now still need a solution,” he says. “You can’t get the same amount of money forever and expect to be able to pay for increasing costs—it doesn’t work.” How the funding crisis will play out—especially with the possibility of a “block granted” Medicaid system—remains to be seen.

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