Treating Adults with Multiple Disabilities

By Alyssa Banotai

Geraldine Sparks sees the value of her son Bill's cochlear implant every time a new season of American Idol airs. She loves to watch him dance and sing along with the contestants on the show. The words he sings are fuzzy and not always intelligible (his volume drowns out the singer anyway), but the melody is perfect.

The road to helping Bill, 34, who has multiple disabilities, reach his full communication potential was a long one for Sparks, but she remained undaunted in her quest. She was finally successful when she found someone who believed in that potential as much as she did-Judith Curtin, AuD, CCC-SLP/A, coordinator of the Speech and Hearing Clinic at West Chester University (WCU) in West Chester, PA.

In 1973, when Bill was 8 months old, he contracted haemophilus influenza spinal meningitis. "After two weeks in the hospital, the doctors handed my baby to me to take home," Sparks recalled.

He had cerebral palsy, moderate mental retardation, speech and communication impairments, and profound deafness in both ears.

"All Billy could do was move his eyes," she said. At 10 months he was fitted with binaural hearing aids. "I was told to accept the fact that Billy was profoundly deaf and would never hear again, but I had faith that he would."

Sparks, who owns a medical emergency preparedness firm, closely followed cochlear implant research for years before attempting to have her son implanted in 1997. She was turned down by two implant centers in Illinois, where they were living at the time. She then read an article about Miriam Redleaf, MD, an assistant professor of surgery at the University of Chicago Hospital, who said she would implant children as long as she felt they could benefit.

"Even though Billy was 27, had been profoundly deaf since he was 8 months old, and had multiple disabilities, the hospital cochlear implant team decided to give him the opportunity to hear," she told ADVANCE. "They observed that he was inquisitive and knew over 500 signs."

Bill received his implant in July of 1999. The spinal meningitis had not caused a bony growth in his inner ear, so Dr. Redleaf was able to insert all 22 electrodes approximately an inch into the cochlea.

However, Bill continued to face communication challenges in the day programs he attended while his mother was at work.

"He does not freely communicate with others," Sparks explained. "If you show him a flash card, he will make the sign. If you point to his mouth, he will verbalize his spoken version, but he does not freely open up to people."

Finding programs and therapists to support her son's needs was difficult. When they relocated to West Chester, Sparks visited the WCU Speech and Hearing Clinic. Dr. Curtin put Bill's social communication challenges at the forefront of her aural rehabilitation protocol.

"I focus on whatever we can do to have him be an independent participating person in society, regardless of disabilities," Dr. Curtin said. "The goal is the same for all patients, according to the level of their cognitive potential."

Cognitively, Bill functions at the level of a 3-year-old, but his communication function is slightly lower. When he first began receiving services at the WCU Clinic, he did not wear his external speech processor continually during the day, relying mainly on signing to communicate.

The main treatment goal is to maintain consistency in his communication, Dr. Curtin said. "The goals are very simple for him. We are working to increase his auditory comprehension by using his signing to drive context. He probably will never be a clear speaker, but he's definitely becoming much more of a communicator."

Bill's speech challenges are due, in part, to his cerebral palsy, according to his mother. "Besides being very shy, the cerebral palsy restricts Billy's verbalizations. It seems the harder he tries, the more rigid his voice becomes. If he is relaxed, words slip out perfectly here and there."

Dr. Curtin views the development of Bill's audition as a safety issue and a basic right.

"A lot of people think the purpose of cochlear implants is to listen to the world and understand conversation, but in this case Bill has a right to be in touch with the world," she said. "Hearing is a 24-hour sense. Cochlear implants give Bill the ability to know that someone is in the room or he needs to move because somebody is approaching-all the things that keep you interactive and alert to your environment."

Bill's sessions at the clinic are highly structured, Dr. Curtin said. He greets everyone when he arrives and does a lot of picture labeling during the session in order to recognize common objects through listening.

"We're not going to see milestone progress, but we've increased the ante of expectation," she said. "It's a lot of drill work. We work very hard on social communication and getting him to use it in multiple environments."

She does not sign with Bill, but he is allowed to use it coupled with speech in his responses.

A typical session is devoted to generating neuronal growth, Dr. Curtin said. "With cochlear implants the more you stimulate audition, the more neuronal growth you can get. Some believe that it can't continue through life, but I've seen him become so much more responsive in the years he's been coming here. He's much more interactive. It's like replacing a 25-watt light bulb with one that's 100 watts. The difference is in calling him and getting his attention. His interaction is just so different."

Initially, Bill's shyness impeded his progress, particularly when working with graduate students.

"All of these therapists are pretty, young ladies, and Billy has to sit across from them," Sparks said. "He is a 34-year-old man with feelings, and he is aware that he has deficiencies compared to other people. He would just put his head down on the table or turn away."

His confidence has grown over time, and it helps that he now knows the therapy routine. Graduate student Amanda Adzema hit it off with Bill right away. She alternated between using cued speech and sign language, and Bill began verbalizing more.

Bill also cooperates with Dr. Curtin-most of the time. "He'll do everything he can to get out of therapy," she laughed. "But as long as you don't react, he'll do his work."

"She demands more of him and gets it," Sparks said. "She gets right in his face."

Dr. Curtin also has worked with Bill in the home and taught his mother to use cued speech with him. He can understand two- to three-word phrases but not complete sentences, and he rarely speaks spontaneously. He has become more adept at generating communication intent and has closer approximations to actual words when he labels objects.

Dr. Curtin and Sparks attribute Bill's achievements to the positive communication reinforcement he receives in his work at the Elwyn Media Vocational Center in Media, PA. During the day program, he separates old X-rays from their envelopes and places time cards into envelopes.

Bill takes his work extremely seriously, his mother said, and it often is the topic of conversation at home. Bill's staff support person, who is in charge of six clients at her station, has Bill sit next to her at work and talks and signs to him in short, simple phrases of two to four words. She recently has started to require verbalizations from Bill. Other staff and clients also encourage him to speak. After four months at Elwyn, Bill is now vocalizing sporadically with one- to two-word phrases.

"A few young ladies have taken notice of Billy and started chatting with him, but he is very shy," Sparks said. "He tries to act like he does not see them or puts his head down, blushes, and gives a little grin. But I know he likes the attention."

Bill's personality has charmed Dr. Curtin as well. "He's just so sweet, you fall in love with him," she said. "He's a cool person to be involved with."

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