Parallels In Time
A History of Developmental Disabilities

Where "You Choose" Came From

by Lucy Gwin

(I keep the published record of the hearings in my bookcase right alongside the books I've written — I'm that proud of having made democracy work.)

On the day after Weiss held his hearings, The New York Times began a seven-part series spotlighting brain injury industry practices. The Boston Globe and a few other papers in towns where New Medico had facilities ran articles, too. Finally, the F.B.I. took notice. They raided the company's Boston headquarters a few months later, seizing more than one million documents and effectively putting New Medico out of business. A number of companies that had followed "the New Medico model" soon followed it into the out of business dump. Medicaid, and private insurers, were onto them.

During my researches I learned that my state, New York, was paying between $900 and $1,400 per day per patient for 160 of its citizens to be "rehabilitated" at out-of-state New Medico facilities. (There was and is a Medicaid law that the state must pay high dollar for any specialized treatment unavailable within its border.) Former New Medico headquarters employees told me that they had often persuaded parents in New York to send their children to Florida, and Florida children to New York, "so the corporation could make more money." One former employee told me, "I always felt bad about that, but usually the further away the parents were, the happier they were with the treatment."

I believed, and had proved for myself, that a person could sit around at picnic tables all day, in the back yards of storefront "day care" operations, in New York itself. Our citizens didn't have to go to Florida or Massachusetts to do it. They didn't even need to leave home.

New York's annual cost for these 160 or so patients, the headlines shouted, was upwards of $60 million per year. Soon, the New York State Department of Health scuttled around to conduct a silly and costly Repatriation Program — involving way too many social workers for my taste — to bring the "expatriates" home.

I developed an alternate plan — the Holiday Inn Program — and submitted it to the state as a substitute for their Repatriation Program. Under my plan, every expatriate would be brought back to his or her own home town and provided with the following:

• A 30-day stay at the Holiday Inn or similar establishment nearest their home — complete with room service and round-the-clock attendant services if desired;
• A 30-day subscription to the hometown paper (want ads for occupational therapy, home rental ads for community re-entry programming);
• Gift certificates to shop at some local stores, dine at some local eateries, and get into the swing of their hometowns again;
• Plus one evening's use of the hotel's ballroom and catering services for a homecoming bash;
• First and last month's rent on the apartment of the expatriate's choice;
• A $500 used car and a 30-day supply of gasoline;
• A one-time $3,000 cash bonus, exempted from spend-down and income tax;
• Applications for a hurry-up Medicaid waiver for home- and community-based services, and an advocate to help fill them in.
  

My plan would cost $559 per day, limited to 30 days for all but one of the items — attendant services. The cost was far lower than any 30 days at any of New Medico's 47 out-of-state facilities, and was also, I figured, cheaper than hiring a league of social workers to conduct assessments and hold interminable meetings.

Even with all those "luxuries" — that's what the health department would call them — the expatriates would still be living more cheaply than they had at New Medico, and would be in control of their own repatriation. Still, the Department said "no."

As a result, here it is, more than ten years later and only a few more than half of the expatriates have made it home. The rest are in nursing homes, and still out of state. Stuck in the machine.

Legislators told me that nursing homes were "much cheaper" than rehabilitation centers, costing Medicaid only $63 per diem. Not true, but the legislators were quoting the day rate, not the actual expenditure. For instance: I had lunch at a pizza parlor with one Connecticut man who, during lunch, lifted his shirt to show me his feeding tube. It was installed when he was in a coma and never removed. For two years now, it had been green and fuzzy with mold, and he worried about that, but said it hadn't hurt him so far.

I later learned that "tube feeding" added $200 per day to the nursing home's Medicaid day rate for that patient. The home had a financial interest in allowing that tube to remain in place, mold and all.

Meanwhile, back at Mouth Magazine, I had learned by 1994 that many state institutions for "the developmentally disabled" or "the mentally ill" cost states as much as $125,000 per year per patient. Hey! A Holiday Inn plan would work for them, too! Plus, they'd have a swimming pool!

So I sat down to lay it all out for taxpayers and lawmakers, and let them choose whether to spend their money on institution services or whether they'd foot the bill for people to get the same services in their own homes. I knew we could demonstrate with photographs that folks are safer and happier at home. Safety and happiness may be more costly, but it is demonstrably nicer.

I called on Colleen Wieck for advice a number of times during this process. First I asked her if she thought services at home would maybe be cheaper. "Absolutely" was her answer. Tell you the truth, I didn't quite believe her — until the numbers started rolling in.

Since she had been so right the first time, I asked Ms. Wieck what graphic theme we ought to pick to present our You Choose price tags. "It's going to politicians?" she asked. "Then wrap it in the flag." We did.

So, in 1995, there it was: You Choose. Costly, unsafe and miserable or Cheaper, safer, happier, which will it be?

This was, and is, a no-brainer of a choice, but even when presented by great advocates, the obvious choice runs into terrible resistance. Politicians can ignore good sense when institution parents whine and nursing home owners scratch their backs.

One more note on "You Choose" — While Lydia Gans and Brenda Prager had beautiful photographs of people living free in the community with assistance, even WID and ADAPT and Disabled American Veterans had no photos of people living in nursing homes or VA hospitals. So the inventive Tom Olin created a hidden-camera apparatus out of an old cloth briefcase, fitted his Nikon inside, and spent a day at Monroe County Hospital, a giant haunted castle next door to the Veterans Hospital and not far from the old Mouth House in Rochester. That's where we got most of the photos that appear on the left side of the page spreads. Dr. Bill Bronston also provided his own hidden-camera images taken at the now-infamous Willowbrook.

The statistics on state "schools" came to us courtesy of Charlie Lakin of the University of Minnesota, and were converted into digital charts for our use by Steve Drake, then a grad student at Syracuse University. The designer for the project was Jeri McCormick, mother of a boy with a disability. We printed five thousand copies of the deluxe slick-paper edition, ten or maybe twenty thousand of the "poor man's newsprint edition." (Sorry, but they're all sold and gone. Somebody, please, make a new "You Choose"!)

The stats on state loony bins and nursing homes came from the paltry few answers we got from Freedom of Information requests to all the states. We asked all the correct departments in all the states for a census of the number of people in their "hospitals" and in Medicaid-paid "slots" in nursing homes on December 31, 1992. We also asked for their total budget for state "hospitals," and their total budgets for Medicaid nursing home "slots," and for similar information on their waiver services.

Divide the latter by the former, and you get the annual cost per person. The math is simple enough, and the states had the numbers at hand, but most of them clammed up. We had to estimate the whole country based on the few states where our subscribers pushed to get answers for us.

When we published "You Choose," many state officials called us claiming that their states paid less. We asked them to prove it with the figures we'd already asked them for. In the end, most of them paid far more than our estimates and no state, even Mississippi, paid less.

It is still up to citizens, and legislators, to choose. It is still up to you and me to get out there and free our people. Nobody's going to do it for us.