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Ruby's Bequest Caregiving is in jeopardy. Families of people with disabilities face an increasingly complex future as they struggle with soaring costs for assistive technology and medical treatment.

Imagine a family called the Joneses. Not the Joneses with the shiny new cars and well-trimmed hedges, who are the envy of your neighborhood. These Joneses are like the rest of us—just trying to keep up.

Gloria, the matriarch, works two jobs: a non-profit during the day, and a freelance gig at night. Her husband, Dan, is a pilot and away from home a lot, leaving the bulk of the housework to Gloria and their eldest daughter, Tina, a local community college student. Tina commutes from home so she can help take care of younger brother, Ben. He has all the concerns of a typical highschool kid: homework, dating and fitting in. He also happens to have cerebral palsy.

We don’t have to tell you how difficult it is to find and keep quality home care workers for Ben after school. We don’t have to tell you how, even with some money from Medicaid, it’s still difficult for Gloria and Dan to balance the expense of managing Ben’s disability with the expense of paying for Tina’s school. We don’t have to tell you how much Gloria worries about what will happen to Ben after he graduates.

These are the same issues pressing many families in the disability community. Gloria and her family deal with them the same way you do: with determination, creativity, and the support of family and friends.

If there is a silver lining to the cloud hanging over the caregiving community, it is that we will persevere. Families of people with disabilities have always had to cope with seemingly overwhelming odds, and they have been developing strategies for overcoming these odds since before United Cerebral Palsy (UCP) first appeared on the scene six decades ago.

Now there’s also a multi-player forecasting game called Ruby’s Bequest to help us create innovative solutions.

Imagine if there was a way for Gloria and Dan to know ahead of time what the future would bring. What if there was a way they could apply the strategies they’ve developed for managing their lives today, to the potential scenarios of tomorrow? And what if Gloria and her family could create these strategies in collaboration with thousands of other families in similar situations? What kind of future might they imagine? That is the question UCP and our partners, AARP and the Institute for the Future, seek to answer with the game.

In essence, Ruby’s Bequest is based on role-playing; everyone who participates pretends they are part of the same small town, Deepwell, IA, in the not-too distant future. In this town, an elderly woman, Ruby, has died, leaving behind six million dollars, which, according to her will, must be divided evenly among the six people who cared for her in her final days. These people are the game’s main characters and will narrate the story and interact with people playing online (i.e. the citizens of Deepwell). As the story unfolds, the townspeople are called upon to send in their suggestions, via e-mail, video, podcast and other electronic media, for how to put Ruby’s bequest to its best use.

Let’s use the Jones family as an example. On day one, for instance, Gloria might record a video of herself discussing what kind of services might be provided for children with disabilities after graduating high school. Ben could compose an e-mail about his vision for a communal living dormitory at the local university. Together, over the course of several weeks, Gloria, her family, and thousands more will help Ruby’s heirs craft an alternative future, where the challenges of today are met with the creative capabilities of an entire subset of individuals who are looking to make a difference in the future. The result will be a wealth of insight into what the future of caregiving could look like.

For starters, pay rates for professional caregivers or Direct Service Professionals (DSPs) in the private sector have been languishing at near rock-bottom for years. The average wage for DSPs at private agencies is only $8.68 per hour, compared to an average of $8.27 for a McDonald’s employee. At those wages, it is difficult to attract trustworthy people, and turnover in the industry is upwards of 80 percent. Add to that a quickly booming elderly population and a punishing economic recession, both of which will squeeze already scarce resources, and the future can look dim indeed.

But that future need not come to pass. In fact, Ruby’s Bequest is an opportunity for us to take matters into our own hands and begin creating the brighter future that is possible. True, Gloria and her family aren’t going to quell all their fears about the future by playing a game, but they will find that there are solutions to their challenges that a community of people who care can devise. And, true, we will need much more than games, if we’re truly going to create a world where every person is cared for in a way that enables them to live a productive and independent life. But for now, coming together to share solutions to our common problems—and maybe have a little fun while we’re at it—is a good start.

rubysbequest.org
ucp.org

ABILITY Magazine Miss International Issue Feb/March 2009
Other articles in the Miss International issue include Senator Harkin — The Christopher Reeve Act; Day of Service — Of Kings & Presidents; Green Pages — Don’t Let Money Fly Out the Window; Humor — There’s Nothing Out there; Film Circuit— Reeling Through Sundance; Skiing — A Crash Course; Multiple Sclerosis — One Day At The Beach; Secret Life — Young Actors Get Their Due; George Covington — Don’t Look Now, Bambi’s Back; Christopher Reeve — His Foundation; His Champions;

More excerpts from the Miss International issue:

Miss International — How She Won the Crown

Ashley Fiolek — Teen MotoCrosser Zooms Ahead

Millard Fuller — His Work Will Go On

Christopher Reeve — His Foundation; His Champions

Multiple Sclerosis — One Day At The Beach

United Cerebral Palsy — Game On!

George Covington — Don’t Look Now, Bambi’s Back

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