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By Patti Murphy

If there are masters of the teachable moment, Diane is one. A school nurse, Diane had many such moments several years ago while working one-on-one for an extended period of time with a teenager who had complex communication needs (CCN) and was medically fragile. She talked with me recently about that assignment. Providing daily health care for and assisting a student in learning is rare in her profession, Diane said. There were enduring lessons for all involved.

All day long, the student used a Tobii Dynavox augmentative and alternative communication (AAC) device for self-expression, using one finger to type whatever was on her mind. At home, she reverted to vocalizations for YES and NO, hand signs and a low-tech word board because her family did not encourage use of the device. This puzzled Diane. She believed in using “whatever works at the time or whatever is appropriate” when some form of AAC is in order and honored the other methods her student used. Yet she saw real value and potential in the technology for communication and made sure her student used it thoroughly at school—for academics, classroom and social communication, taking tests—whether opportunities for self-expression were obvious or not.  She taught teachers strategies that encouraged the student to communicate. These included sabotage, a technique conversation partners use to create opportunities for communication (through device use) by putting up roadblocks or purposefully misunderstanding something that the person tries to say without using their device. Sometimes they asked the student to use the device instead of the word board. When the student wrote and told stories with the aid of the device, others saw her imagination, personality and intelligence, Diane said.

The school speech-language pathologist (SLP) was completely on board, constantly updating content on the device to reflect the student’s changing needs and interests. Diane recalled that the SLP played games like “Jeopardy!” with the student as a way of keeping language skills fresh.

From the start, Diane wanted her student to recognize that communication meant more than making requests. “I would encourage her to use the device to communicate her feelings,” she said. “Not just, ‘I need to go to the bathroom,’ but ’I’m upset with my mother because of what she said last night.’” If the student had a crying jag, they’d talk about it immediately after. Sometimes the student’s friends joined in.

As time went on, the student communicated in more challenging environments. She socialized at school dances using the device. In an extended school year program, she shared her storytelling and writing abilities with preschoolers with disabilities. A work experience at a movie theater required her to use the device to say, “Thank you for your ticket. Please go to the left” as patrons arrived. Diane went along on all of these ventures. She said the theater job took the student far from her communication comfort zone. “She assumed that people understand her or would be patient enough to wait for her to use the device to convey a message,” Diane said. That didn’t always happen. Nonetheless, it was a good learning experience.

It makes sense that Diane always considered it part of her job to be attuned to students with CCN and help make colleagues aware. She raised a son with developmental apraxia and worked in rehabilitation hospitals. The years Diane spent with the student who used an AAC device brought forth a revelation.

“I thought I had a tremendous amount of patience,” she said. “It made me even better.”

Breaking into the workforce is a common challenge among people with disabilities. Some find their best prospects in self-employment.

Cary Griffin has shepherded many on that path. His Montana-based consulting firm, Griffin-Hammis Associates LLC, has provided services and supports to job seekers since 2000. In a recent interview with us, Griffin said families often feel stuck when it comes time for a child with disabilities to earn a living because of gaps that exist between special education programs and adult life. The expectation that students will not further their education or be able to work is prevalent. Parents also fear that by working, their adult children will lose Social Security and Medicaid benefits.

Yet Griffin and his staff see hope in such circumstances. A number of their clients throughout the United States have become successful business owners despite profound personal challenges and a system that appears to encourage dependency. One shining example is Joe Steffy, 28, whose eponymous Poppin’ Joe’s Kettle Korn became a sole proprietorship in 2005. Joe is non-verbal and has used Tobii Dynavox devices for communication since early childhood.

Like many small businesses, Poppin’ Joe’s was not an overnight success but the culmination of resourcefulness, good mentorship and unwavering family support that gelled into a rewarding venture over time. There were reservations early on. Some saw Joe as better suited for joining a day program or sheltered workshop than running a business because of his Down syndrome, autism and epilepsy. While his high school transition plan reflected that, Joe’s parents, Ray and Janet, knew their youngest son as a hands-on learner who thrived on having a variety of things to do.  They nurtured those qualities, as Griffin and his late business partner Dave Hammis saw. “You knew there was no way Joe was not going to succeed. They’re the kind of parents you want behind you,” Griffin said.

During high school, Joe accomplished much outside the classroom. His work experiences included caring for some 30 horses and their stables, performing maintenance tasks at a community center, and setting up for conferences at the financial services office his brother managed.

Ray Steffy coincidentally met a kettle corn vendor during an Alaskan vacation and a revelation came: My son would be good at this, he thought.  He didn’t second-guess it. “We give no consideration to low expectations,” Ray Steffy said.

Eventually, Ray and Janet Steffy met Hammis at separate conferences.  Hammis helped the Steffys write a business plan and secure start-up funding for Joe’s business from the Kansas Council on Developmental Disabilities and Kansas Vocational Rehabilitation Services. Joe bought a new kettle, booth equipment, a computer and printer, and inventory for 18 months.  This factored into the written Plan to Achieve Self-Support (PASS) Joe followed. The PASS is a work incentive allowing Social Security beneficiaries with disabilities to set aside money and/or possessions to pay for items or services including training required to reach a specific work goal. Click here to learn more.

“Unfortunately, a lot of families don’t know that these resources are available and the schools don’t know that they’re available, just because of the overwhelming task they’ve already got,” Griffin said.

In 2008, a few years after he went into business, Joe’s earnings were high enough that he stopped collecting Supplemental Security Income cash benefits but still qualified for health care under Medicaid.

Now, as then, Joe enjoys his work.  “I love being Poppin’ Joe,” he said using the Maestro in an interview. ”People know me and smile when they see me. My business has many parts. I quickly finish one task and go to the next.”

Joe’s employees include his father, and individuals hired through networking and careful screening that his parents coordinate. The Poppin’ Joe’s team prepares and sells kettle corn at numerous festivals in warmer weather months.  Workers drive him to retail outlets that distribute the product. Joe also has a substantial mail-order business. For Joe, it is being in charge that makes gainful and meaningful employment possible. He says he couldn’t do it without his team.  “They make me successful.”

The Steffys probably would start planning sooner if they had to return to square one, but they’re delighted with how things have turned out. “Give your son or daughter total ownership and he or she will totally amaze you,” Ray Steffy said.

Joe lives on his own with assistance from a hired caregiver. He gives presentations about his experience to audiences around the country. His free time is also filled with activities from taking piano lessons to participating in multiple sports.

Many others with disabilities aspire to similar independence through self-employment as the national unemployment rate for people with disabilities hovers around 80 percent. The U.S. Bureau of Labor Statistics reported in 2009 that 11% of workers with disabilities were self-employed versus 7 percent of workers overall.

That career path, as the Steffys know, is often about keeping an open mind.

“The argument from the system to stay poor, to stay in poverty, wasn’t OK with Ray and Janet, and I know it wasn’t OK with Joe.”

Learn more about Griffin-Hammis Associates LLC and its work on self-employment at:

http://griffinhammis.typepad.com/files/plans-for-achieving-self-2012-cg.pdf

http://www.griffinhammis.com/selfemployment.html

Learn more about Poppin’ Joe’s Kettle Korn at http://poppinjoes.com/.

Parkinson’s disease and throat cancer are currently sharing a spotlight of sorts. April is Parkinson’s Awareness Month while April 20-26 is Oral, Head and Neck Cancer Awareness Week. Though medically on different pages, the conditions intersect in the augmentative and alternative communication (AAC) world. Adults with speech impairment or loss related to either condition use some form of AAC or can improve their quality of life by doing so. Some use simple AAC methods, as we all do, perhaps without thinking much about it. They write notes for conversation partners to read, use facial expressions or gestures. Or they rely on someone who understands their limited speech, to help them get a point across. Long (sometimes many years) after they’ve established such ways of interacting, many of these folks decide to bring an AAC device into the mix with good results, as Jim and Andy have experienced.  Jim, a 25-year cancer survivor, uses a DynaWrite 2. Andy has lived with Parkinson’s disease for 20 years and has a T10.

We tend to hear stories like Jim and Andy’s much less often than those of people with ALS (Lou Gehrig’s disease), cerebral palsy or autism—groups that more traditionally have embraced AAC technology as a primary voice. The reason could be about numbers or physiology. There’s also the reality that when people are dealing with multiple significant life changes that come with a diagnosis like Parkinson’s or cancer, AAC solutions are a tiny piece of the equation.

Of the nearly half million Americans living with Parkinson’s, an estimated 60 to 90 percent have associated speech difficulties that often remain untreated.  Declines in articulation, volume, intelligibility, consistency and rate of speech are characteristic of the impairment, which typically happens gradually and can vary from day to day. Development of hand tremors and a masked, or blank, look on the face are also common, making it hard for individuals to communicate through gestures and facial expressions.

Individuals with throat (laryngeal) cancer are a relative minority. The disease places at 20 on a list of various cancer types by prevalence in the United States appearing on the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute website. It represents .8 percent of new cancer cases, a small fraction of which result in removal of the voice box, or larynx. Post-surgery, patients may recover speech communication abilities with the aid of a voice prosthesis or electrolarynx. Some learn esophageal speech, a skill that involves speaking through the esophagus, as a way to communicate. Though common, these treatments are not always successful or appropriate for the person.

Enter high-tech AAC solutions, which can fill gaps when other options, even strategies that the person has been using all along, are less than optimal. Relying on written notes can be time-consuming for everyday communication. Familiar communication partners aren’t always there to help as interpreters. Scores of individuals experiencing speech disabilities later in life consider an AAC device the way to go for fluent and reliable interactions with strangers, friends and relatives they seldom see, in crowded or noisy settings or when fatigue sets in. The technology provides a wealth of language to fit their age, abilities and personal interests without fuss. Minimal programming is required to modify and store content. Some devices have keyboards (onscreen or external) for those who, like Jim, prefer to use messages typed spontaneously over preprogrammed ones.

The speech-language pathologists who recommended Tobii Dynavox devices for Jim and Andy say the men took to the technology immediately and confidently. More important, each had strong support from loved ones and friends who knew their communication histories and wanted them to succeed at this new level of self-expression.

Neighborhood kids think Jim’s use of AAC technology is awesome. He talked at a church youth group Christmas gathering using his device.  Andy, a retired meteorologist, voluntarily teaches a middle school science class about weather. The students see that his spirit stays strong despite his constant challenges.

As Jim and Andy continue their separate journeys, chances are their stories and others with a similar message will meet again at the intersection of awareness and success—in communication and in life.