Gateway to the World

Local funding source provides life-changing communication device for young boy

by Alyssa Quintero on January 1, 2009 - 3:39pm

QUEST Vol. 16, No. 1

In Pearland, Texas, Connie Guinn worked tirelessly for several months to gain access to a speech-generating device for her son Benjamin, 6, who has myotubular (centronuclear) myopathy.

With the exception of making noises and sounds, Benjamin was nonverbal. Guinn had tried to help her son learn sign language without much success.

“He’s wanted his whole life to tell you whatever he wants to tell you by blinking his eyes, but there’s only so far you can go with that,” Guinn explains. “He could do some signs, but it took so much out of him, and he just didn’t want to, which was frustrating.”

What was needed was an alternative augmentative communication (AAC) device that could speak for Benjamin — and the money to fund such an expensive assistive technology purchase.

MDA offers one-time assistance of up to $2,000 toward the purchase of an AAC device, if prescribed through one of its clinics because of weakness in the muscles that control speech and swallowing. (MDA also provides assistance with device repairs and modifications.) Medicare may cover up to 80 percent of the cost of an AAC device, for those eligible for this benefit.

But even with this help, there can be a gap between funds on hand and the final price tag, leaving people searching for additional assistance. One such source, as Connie Guinn discovered, may be a state-run telecommunications equipment distribution program.

[Note: It’s important to consult with a speech-language pathologist (SLP) before obtaining an AAC device to ensure it’s the right fit for your needs and will be adaptable if disease progression causes additional weakness. Your MDA clinic can provide an SLP referral; children also can receive SLP services through their school.]

’This is easy’

The Tango AAC device manufactured by BlinkTwice was a great match for Benjamin’s communication needs, but Guinn’s request for insurance coverage was denied by both her private insurance and Medicaid. She knew it would be impossible to pay for the device ($6,899) out of pocket.

Down but not out, Guinn met some BlinkTwice representatives at a local workshop in late 2007 who told her about a financial assistance program in her own backyard — the Specialized Telecommunications Assistance Program (STAP).

Benjamin Guinn
Benjamin Guinn has “blossomed” since he started using his Tango communication device. Fortunately, his mother Connie found a financial assistance program to cover the cost of the specialized equipment.

Offered through the Texas Department of Assistive and Rehabilitative Services, STAP provides financial assistance for the purchase of specialized assistive equipment or services for individuals whose disability interferes with their ability to access the telephone network.

In January 2008, Guinn submitted a STAP application for a Tango for Benjamin. She included a report from Benjamin’s speech therapist discussing his diagnosis, strengths and weaknesses, and recommending the Tango as a good match for his physical and cognitive skills.

Three months later, Guinn was notified that Benjamin was approved for a voucher worth just under $10,000, covering the cost of the Tango, a “jellybean” button switch, a mount for the switch and a wheelchair mount for the device. Now, Benjamin could simply push a button to speak a phrase, ask a question or explain his needs.

Guinn says Benjamin was a natural from the first moment he sat in his wheelchair with the Tango.

“It was perfect because he could see it, he could reach it with his hands, and the first button he pushed said, ‘This is easy.’ Since I had put him in the wheelchair wearing just a pair of shorts, he then used the device to say ‘I need a shirt,’ and ‘I need some shoes.’”

“We were pretty excited,” Guinn says. “It’s just opened him up tremendously. We’re not trying to guess what he’s saying anymore. It’s a long time coming to wait six years to hear your child tell you he loves you.”

It takes two to Tango

In the beginning, Guinn noticed Benjamin kept pushing the buttons over and over but “wouldn’t really respond to anybody or say anything that was appropriate.” She worried that the Tango wasn’t meeting his communication needs, despite all the time and money that went into getting it.

But once Benjamin figured out where everything was, “he really went to town with this thing,” she says. “I can see in hindsight that he was memorizing where all the buttons were, because now he goes right to them and responds to people.”

In addition to its speech-generating capabilities, the Tango has a built-in digital camera. Benjamin takes pictures to show his mom what he did during the day and has recorded himself making noises.

“His eyes just light up with it,” Guinn says. “He enjoys using a special feature where he presses different phrases spoken in the voice of SpongeBob SquarePants, and he just cracks himself up.”

Benjamin is a full-time vent user, so if his parents are in another room, he can call for help without waiting for the alarms on his machines to go off. He simply pushes the button that speaks, “I need some help.”

’This is my Tango’

The Tango offers a voice-morphing technology that enables an adult to record customized messages onto the device and then morph the message into a child’s voice. The device features some 2,500 prerecorded phrases and 4,000 words, and can hold a total of 10,000 phrases and 20,000 words.

Tango also offers 12 character choices for children, including kids of different racial/ethnic backgrounds pictured in wheelchairs or standing. It stores up to 30 photo albums holding up to 400 photos, so users can personalize the device.

Since the Tango can be mounted to his wheelchair, Benjamin takes the device everywhere, including his therapy sessions. One day when leaving a speech therapy session, he put the Tango up to the loudest volume and repeatedly pressed a button that said, “This is my Tango. I use it to talk.” Guinn says he smiled the entire time.

Benjamin started kindergarten in the fall of 2008 and brought the Tango to school. After a month, he began to say some words on his own such as on, off, no and uh-huh; he’s also been singing and “babbling” (general vocalizing), which he hadn’t done prior to getting the AAC device.

“It’s been a real blessing just to see him be able to express himself and communicate without a lot of guessing for all of us,” Guinn says, noting that the versatility of the Tango should enable Benjamin to use it for a long time.

“It’s been amazing watching Benjamin’s personality blossom with this device. I thought he showed a lot of character before getting a communication device, but now he has opened up tenfold. He’s always loved to play jokes with us and now he can do it with ease.”

Finding funding

Many states offer telecommunications equipment distribution programs or telecommunications access programs that provide specialized devices at little or no cost to people with disabilities. In addition, some programs, like STAP in Texas, grant vouchers to purchase equipment rather than direct equipment distribution to people with mobility and speech impairments.

The programs vary from state to state as to available equipment, eligibility and funding. The programs also may differ in type — some provide direct equipment distribution or lend devices through long-term loans, and others are tied into the state’s telephone relay services.

Eileen Alter, a specialist with STAP in Texas, explains that telecommunications programs developed in the mid-1990s following passage of the Americans with Disabilities Act (ADA), growing out of legislation providing relay services for people with hearing impairments.

Not all telecommunications equipment programs provide access to AAC devices. Some only provide specialized telephone equipment such as hands-free speakerphones, large-button speakerphones, amplified telephones and more. But, it’s worth investigating whether AAC devices could be included in the mix.

Some states also limit telecommunications eligibility to people with hearing, speech and visual impairments.

STAP offers telecommunications devices to anyone who has a disability that makes it difficult to use the telephone, says Alter. The program funds AAC devices because if people can’t speak, Alter explains, they clearly can’t use a telephone. An AAC device can be paired with a speakerphone or amplified telephone for effective phone communication.

Generally, most states require applicants to be a resident of the state, and to submit a certificate of disability or letter of medical necessity from a physician, occupational/physical therapist or speech-language pathologist.

For the Guinn family, Benjamin’s ability to communicate wouldn’t have been possible without STAP. Although some states have income eligibility requirements, STAP vouchers are not based on financial need, says Alter.

STAP has two applications — one for basic telephone equipment (like speakerphones or voice-amplified telephones), and a second for speech-generating devices and accessories. The typical waiting period for a response is about four weeks. Once a voucher is granted, the applicant must obtain the specific equipment listed on the voucher and may work only with vendors honoring STAP vouchers.

To learn more about these kinds of programs in your area, visit the Telecommunications Equipment Distribution Program Association’s Web site for a state directory and brief program description.

More help where you live

In addition to checking with your local MDA loan closet for communication devices and other equipment, be sure to contact your state’s federally funded Assistive Technology Act program.

Available in each state, AT Act programs work to improve access to assistive technology products, including telephone equipment, and services at low or no cost. State AT Act programs don’t provide direct funding, although they give referrals to local funding sources. Instead, these programs provide direct equipment through short- and long-term loans and equipment-exchange programs.

Through RESNA’s National Assistive Technology Technical Assistance Partnership (NATTAP), you can locate programs by state, with complete contact information. Visit RESNA Projects, or call (703) 524-6686. And for a more detailed article, check out “Assistive Technology Funding Challenge,” January-February 2007.

Also, many AT Act programs offer affordable AT — such as durable medical equipment, AAC devices and computer equipment — through equipment recycling and reutilization programs. (For a detailed article about AT reutilization programs making it easier to get low-cost equipment, read “Use It & Pass It Along,” January-February 2008.)

Local centers for independent living (CILs) also may offer equipment loan and recycling programs. Independent living counselors often work with people with disabilities to help determine their eligibility for state and local funding programs.

For more information about alternative funding sources, including Alternative Financing Loan Programs and Medicaid waivers, read “Playing the Money Game,” May-June 2008 and “Funding Freedom,” May-June 2006.

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