	October 1997

The Haunted House ...

(and Senate)

Mick Joyce

The Author. D.

Mick Joyce is a Research Specialist with the University of Wisconsin - Madison, School of Nursing. He does quality control research for a targeted managed care plan. Mr. Joyce holds two master's degrees; one in Urban and Regional Planning and another in Health Policy Administation. He was awarded the Words + ISAAC Outstanding Consumer Lectureship Award in 1992 and is the current recipient of the UCPA-PRC Communication Technology Employment Award. Mick is an active AT user, employing AAC devices, special wheelchair seating, a lift-equipped van, and various special computer software to do his work and remain connected to the community.

Mr. Joyce's opinions are entirely his own. Send your comments to Mick Joyce at mjoyce@facstaff.wisc.edu

I don't usually believe in ghosts. Ghosts are usually thought of as dead persons coming back to life in some shape or form to haunt us. When one broadens the definition to dead ideas coming back to live, however, I have to think twice. This is especially true when I think about what is happening it our nation's capital these days. Being brought up in the social reform era of the late 60's and early 70's, I believe we're taking a cat walk backwards to the never, never land of Dopey, Donald Duck and Alice in Wonderland. On the other hand, I may be considered a ghost myself by some.

This is generally seen as harmful to people with disabilities and assistive technology (AT) users in particular. Because of its low volume, assistive technology is often seen as products that could never make it in a free market economy. Hence, it is believed that it will need government support for development right through the purchase of the device for the user. Looking at trends, it will be difficult to get government support to remove bats from the Agriculture Departments main office even though they carry disease-infested spiders. Unless, of course, these creatures are surrounded by a swarm of political bumblebees that may cause embarrassment for some congressional committee chairperson.

Ghosts are everywhere in Washington these days. So many Ghosts are about that it's difficult to select 4 or 5 main disembodied spirits that concern AT users. What follows will not be a complete list, but only a starting point for discussion.

The Ghost of the Ever-Gobbling Government:

"The era of big government is over."

I've heard this so much the it nauseates me. Like an extended piece of green slime, it runs over the beltway of Washington. My response is "get real!" I have not heard a proposal to cut the members of Congress in half, and there is still plenty of pork to pass around. A clearer translation of this, I think, would be, "No more soda pop for food stamp recipients." Most of AT, in my mind, would wrongly, fall in the soda pop category. It would help if some lawmakers knew what Assistive Technology. does for people with disabilities. If there was some hard nosed research that documented that AT.helps us become more productive and increases our quality of life, this would be a start. Until this happens, AT will continue to be seen as inconsequential, something to be put on the back burner, something to give lip service to without any real cash value.

The Ghost of a Power Sucking Federal Vampire

People will always want power. It's human nature. Power is a means of control over one's life. Control means less stress and higher quality of life. Ask any person with a disability who's dependent on another person to get him/her out of bed in the morning, Political power means personal power. Very few are willing to give it up once they get it. That's why term limits didn't pass. The federal government, many say, has too much power. The translation is the federal government has too much responsibility. Those that have responsibility take the heat when something goes wrong. Giving states and local governments more power and responsibility so they can be more responsive to local needs has a down side as well. It will lower national standards for programs such as Medicaid, a major purchaser of AT equipment. National standards have a balancing effect giving those in poorer states roughly the same benefits as in richer states. Because local power is contrary to the promotion of free trade and commerce (people making money), again, it will never get beyond the soda pop mentality mentioned above. Treaties such as NAFTA and GAP, which were supported by a majority in both parties actually move the other way, toward world government. If Congress were serious about local control, these measures would have been defeated. Besides, to kill a vampire, it takes a wooden stake driven directly into his/her heart. What Member of Congress has the courage to do this messy deed?

The Ghost of Privatization:

Sometimes the big bad wolf of privatization comes hounding at the door of Congress. His howling in the halls has become increasingly loud lately causing members to miss cat naps between votes. This is, of course the idea that government does nothing right and all the work of government, except the common defense, should be turned over to the private sector where economy and efficiency is the golden rule. Sometimes the wolf is right. Most of the time, however, the wolf forgets why government has these jobs in the first place (they don't cut a profit). Their role is quickly returned to the bureaucracy no matter how messy things have been in the past. Assistive Technology, being mostly a private endeavor anyway, will be only affected on the reimbursement side. Some companies rake in huge profits. With the current state of madness they can afford to become "leaner, meaner" machines. The U.S. Government spends so little on research and development of AT products, compared to other industrial countries, (adjusted for GNP) that any cuts here would be like pouring a few more buckets of slime on the steps of the haunted house.

The Managed Care Scare:

Managed care for people with disabilities is, of course, a spin off of the privatization effort. Although it has many objectives the main one is to cap spending on individuals at certain levels. It's not so much the care that's being managed, but rather it's the money that's being controlled. Assistive Technology may take a few hits in this regard, but much of it is defined as non-medical. My take on managed care is to give it a chance. No one I talked to seems happy with the medical monster, unmanaged or in some cases mismanaged. It may actually see AT as a cost-effective way of health promotion and a way to prevent costly secondary conditions of disability,

One thing good about ghosts is they almost never stay around for long. Most likely the best advice one can give is to cut a pumpkin or two, face shaped like your favorite political figure, put a blood red candle inside and wait in the wind for the phantom creatures to go away.

However, don't forget about Casper, the friendly ghost.

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