Eye On Illinois: Most of us outside looking in at struggle to serve developmental disability community

Do you know someone who lives in a group home?

Does a friend or family member work by providing help to people who cannot feed or bathe themselves?

When you read a headline like “Illinois faces backlash over bid to end oversight of disability services,” does that bring to mind someone whose life is directly affected consent decrees, who punches the clock at a developmental center, who understands the implications of Ligas v. Hamos?

On Monday, Capitol News Illinois detailed the state’s effort to end disability services oversight from federal courts. To read an overview from the Illinois Department of Human Services, visit tinyurl.com/LigasOverview. As a shorthand for the complexity of the situation, consider the Ligas plaintiffs originally filed their lawsuit in July 2005, and the consent decree didn’t take effect until June 2011, nearly six full years later and a dozen years after the 1999 U.S. Supreme Court ruling forcing states to accommodate preferences against institutional care.

At the heart of the issue are people with developmental disabilities living in or potentially targeted for private (but state-funded) facilities with at least nine people who wanted instead to be in community-based settings. Even surface-level research becomes quickly laden with insider jargon.

If you know the longhand version of ICFs/DD, NOFO or DSP, or are familiar with the PUNS waiting list, you’re probably answering yes to every question from the first three paragraphs. You might be directly tied to the hundreds of individuals served under a Medicaid waiver in fiscal 2024. But statistically, the likelihood is that most people are on the outside looking in, somewhere between concerned confusion and complete disassociation.

When you care for someone with a disability or work in any capacity of providing service to that community, it’s impossible to become anything but intimately familiar with the way the state and federal government manage agencies. That work is vital because if not for the government, some people would literally be discarded as certain families or private organizations, even well-intentioned charities, lack the resources or the willingness to take on such challenges.

Though obviously not speaking for everyone, broadly it seems most Illinoisans expect proper care for people living with developmental disabilities. In that large group, likely another significant majority understands and accepts the cost to taxpayers. But it is a political reality that even under that big umbrella are many voters who don’t have firsthand connections to this complex world and it is extremely difficult to awaken those folks to the consistent struggle of living up to these ideals and, more importantly, legal obligations.

It’s not that people don’t care, but caring alone doesn’t solve problems. Neither does money. True public service is sometimes an insurmountable obstacle.

• Scott T. Holland writes about state government issues for Shaw Local News Network. Follow him on X @sth749. He can be reached at sholland@shawmedia.com.