Major life functions that diminish or disappear because of ALS are what make the disease so brutal.
But the loss of the ability to complete the simplest everyday tasks — changing the TV channel, turning on a light, adjusting a thermostat, making a phone call — can also create considerable frustration.
That’s where an environmental control unit (ECU) can make a difference.
An ECU is a high-tech device that enables people to operate various appliances in their homes, offices or other environments through one centralized controller.
These high-tech devices can restore or maintain variable levels of independence for people with ALS by providing a new way to control devices they can’t operate the standard way.
|The Imperium by Tash
“An environmental control simply replaces the function of small electrical devices that you cannot control with normal hand access,” said Mary Lee Koyl of Tash Inc., a company that sells a variety of ECUs and other assistive equipment.
ECUs range from simple units that control one device, like a remote control for a television, to computer-based units that can control dozens of devices across multiple rooms.
A variety of technology is used to make an ECU work, but the basics are this: “For every device we want to control, we need a transmitter and a receiver,” Koyl said, citing a television with a remote as an example.
ECUs employ a variety of transmission methods: ultrasound (sound waves that are nondirectional so the transmitter doesn’t have to be pointed at the device); infrared (low-powered and short-ranging signals that must be pointed at the device); and radio frequency or X-10 (low-wattage radio signals that can create a network through existing wiring in a house).
Some of the simplest ECUs rely on AC power, and consist of a box that plugs into a wall outlet while the device plugs into the box. Some of the most advanced ECUs use more than one type of transmission method and can control an entire home.
But most consumers really need to know whether an ECU unit will work for them, and how much it will cost.
Do a home inventory
Before you seek out dealers or manufacturers of ECUs, put some careful thought into how one can fit into your life.
|A television remote control is a simple example of an ECU.
“Before looking at the number of products that are on the market, create a list of all the devices you want to control in your home,” Koyl said.
Start from when you enter your front door, and go all around your house until you’d exit. Make a list for every room, and a list of items to be controlled by every device, she said.
You should even consider the specific functions within devices, for example, the power, channels and volume buttons for a television remote.
Next, decide how you’ll access the device, Koyl said.
Some choices of “access methods” include large keys, single or dual switches, the joystick or other controller on a power wheelchair, a communication device, or voice activation.
Keep in mind that your needs for access may change with ALS progression.
For instance, ECUs made by SAJE Technology are all voice-activated, but come with a backup method to allow access by a switch, said Joel Tobeckson, vice president of Customer and Dealer Relations.
Many devices will work with specialized equipment such as hospital beds. Also, many augmentative, alternative communication (AAC) devices include a limited number of ECU features.
How much does it cost?
As with many high-tech devices, the more an ECU can do usually means the more it costs. Add-ons and other accessories can also enhance an ECU’s function and its price.
For example, the MiniRelax from Tash is a scanning infrared transmitter that controls the TV, VCR or any other device that operates using infrared. It will store up to six functions, and costs $250.
On the higher end of the price scale, the Imperium includes an integrated telephone, infrared and X-10 transmission, backup power for six hours and more. It costs $7,200 for a complete package through Tash.
In the middle, there’s the Powerhouse Roommate by SAJE Technology. It is a fully voice-activated telephone plus voice control over devices (both infrared and X-10) in a single room. It costs $2,500.
These three are a very small sample of what’s on the market.
Insurance coverage for an ECU device varies by state, but funding is often approved for Vocational Rehabilitation and VA clients, Tobeckson said.
Others in the assistive technology industry said that sometimes funding can be secured if a system includes a “nurse call” feature.
Enabling Devices, (800) 832-8697
SAJE Technology, (847) 756-7603
Madentec, (877) 623-3682
Tash Inc., an AbleNet company, (800) 463-5685
Quartet Technology Inc., (978) 649-4328
X-10 Home Solutions, (800) 675-3044