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How to help the developmentally disabled without hurting them

Jay Dunlap - published on 07/04/16 - updated on 06/07/17

Well-intentioned changes to laws move many from satisfying jobs to adult daycare

On a lovely 31-acre campus in Chicago, Misericordia is the home, workplace, therapeutic environment and source of hope for more than 600 individuals with intellectual and developmental disabilities. While the vast majority are adults, some children with profound disabilities receive round-the-clock care in state of the art facilities. Adult residents get to create works of art, swim and exercise, learn to cook in kitchen-classrooms, and live together in apartment-style housing. Many have jobs in the community, but most work on campus baking brownies, serving in the restaurant, helping with laundry, or other tasks that help sustain this city-within-the-city.

Family and visitors see a place of beauty radiating God’s love in the spirit of the Sisters of Mercy who founded Misericordia. But government regulators see a segregated world that should no longer receive the public funding that covers three quarters of Misericordia’s annual budget of well over $50 million. Across the country, there is a major disconnect between the experience of individuals and families and the perception of experts who influence law and regulations.

Increasingly, centralized control of services for adults with disabilities moves away from America’s historic federalism, the sharing of power among state and federal authorities. Federalism is one example of the Church’s principle of subsidiarity, the idea that control should remain as near the individual as possible. As well-intentioned as federal policy-makers may be, the problems emerging for adults with disabilities show how the law of unintended consequences takes over when subsidiarity is violated.

The changes in federal law and state regulations are driven not by heartless budget-cutters but by academics, professionals and politicians who seek social justice but, from the perspective of many service providers, take too narrow a view of what constitutes quality services. Among their ideals:

-“Employment First,” a movement that proposes that any or all persons with disabilities should be in competitive employment.

-Ending “segregated” employment that places individuals with disabilities in sheltered workshops.

-Eliminating institutional settings for work or housing.

-Person-centered programming that maximizes an individual’s choices for how they want to spend their days, be they at work, shopping, in entertainment, etc.

On their face, each of these goals has merit. The problems come translating them to reality. When the state of Maine eliminated sheltered workshops in 2008, two thirds of adults who worked in them never again found jobs, and enrollment in adult day care programs exploded more than five-fold. Work was replaced with baby-sitting.

While some workshops have been poorly run, others are excellent. Village United Northwest in Sheldon, Iowa, serves more than 300 adults with residential services and a wide range of work options, from a high-end thrift store to recycling metals to grinding and packaging coffee.

Federal law has set March of 2019 as the time by which all states must be in compliance with the new federal regulations mandating the end of sheltered workshops and institutional housing. That threatens quality programs across the country.

It is especially threatening for residential providers who don’t fit the “extended family home” (EFH) model that is now in favor. An EFH is essentially like a foster home for adults with disabilities, and it is a good model. But it is not the only good model.

In Elgin, Texas, Judy and Jerry Horton have built Down Home Ranch, a picturesque rural setting where up to 40 adults with disabilities can have a home, work the farm, and live what most of us would see as an idyllic existence. The Hortons built it for the youngest of their four daughters, who was born with Down syndrome. Watch the video to see what love can build.

Without a massive endowment, the Hortons and other providers depend on public funding to serve adults with disabilities. Federal Medicaid block grants go to the states, which then parcel out the funds to support qualified individuals. But due to the myopic way the ideals mentioned above are being implemented, many high-quality services are threatened with extinction.

In October 2015, hundreds of service providers from across the country met at Misericordia to strategize how to protect their good works. They started the Coalition for Community Choice, an alliance of professionals who agree that the ideals motivating the current changes have merit, but they are not the only way to serve adults with disabilities. These providers seek to have lawmakers and regulators allow families a wider choice of services for their loved ones. They seek to offer person-centered services in ways that current narrow definitions don’t envision.

And if adults with disabilities don’t retain the freedom to choose (subsidiarity!) from the full array of good options, they will pay for it with a loss of their God-given dignity and self-worth.

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