Like many parents, Nicole and Brett Guysi developed the habit of spelling words in front of their young children to keep conversations private. And it worked most of the time, especially with their daughter Brooke, who has limited verbal ability and uses an alternative communication device.
Although one time when the family stayed at a hotel, Nicole asked her husband if they could get some F-R-U-I-T as a snack for their children, Brooke and her brother Blake. Brooke went right to her alternative communication device and chose the word “fruit” to confirm. The family laughs about it now, but it demonstrates the importance of Brooke’s device to connect her to the world.
Diagnosed with a rare genetic condition, Brooke, now age 9, had previously been nonverbal but uses her device to communicate with others. It’s also improved her spoken communication by giving her familiarity and curiosity for words and phrases, says her mom Nicole Guysi.
Many individuals like Brooke rely on augmentative and alternative communication (AAC) devices to interact with others. Augmentative devices support existing speech, and alternative devices are used in place of speech that is absent or not functional. Historically the Division of Developmental Disabilities (DDD) coordinated this benefit for qualifying members. As of Jan. 1, 2021, all new requests for purchases, replacements, repairs and training for AAC devices will transfer from DDD to the health plans, Mercy Care and UnitedHealthcare Community Plan.
“We are honored to expand the services we provide our members,” said Amy Pawlowski, executive director, complex care for UnitedHealthcare Community Plan. “Our goal is to develop efficiencies increase transparency and improve access to care. Assisting individuals in their communication journey is something we are well positioned to do.”
The health plans already manage all other durable medical equipment benefits except for AAC. DDD will continue to oversee the health plans to make sure members are getting quality and timely services.
What this means for DDD members
As of Jan. 1, members who need assessments for AAC devices, or repair or training for current devices, will initiate the process with their support coordinators. The individual’s support coordinator will help gather documents and forms, and will send required information to the member’s health plan. The support coordinator will also monitor requests through the process until decisions are made. Members will need to use the same health plan for AAC services that they already use for other DDD services.
If parents have concerns about their child’s new AAC request after Jan. 1, they can call their support coordinator or the DDD customer service number, 844-770-9500. Parents can also call the member services department for their health plan, Mercy Care, 800-624-3879 or UnitedHealthcare Community Plan, 800-348-4058.
In November, Raising Special Kids and the Autism Society of Greater Phoenix hosted listening sessions with Mercy Care and UnitedHealthcare Community Plan to gather feedback from members and their families about this change to the AAC benefit. Several questions arose about the timing for new requests and requests for repair, and also about training for new devices. Community information sessions hosted in December will provide more information as this change comes closer.
Could my child benefit from an AAC device?
AAC devices are frequently associated with individuals who are nonverbal. But AAC devices can help anyone who has difficulty with verbal communication in any situation. According to the Arizona Technology Access Program (AzTAP), AAC devices offer a “voice” for individuals who can’t speak, or can help those who don’t speak clearly enough for others to understand. AAC devices can also enhance communication for those who can speak but need a boost.
“Frequently, we may forget what both of the As stand for” in terms of augmentative and alternative communication, said Brandi Wentland, M.A., CCC-SLP, speech-language pathologist and AAC specialist with TherapyOne. “Alternative communication is what comes to mind, but augmentative communication adds to existing speech. Someone could be able to speak but they also have apraxia or selective mutism. Or someone with autism can work on expressive language.” Wentland estimates that only a small percentage of individuals use AAC devices compared to the number of people who could truly benefit from them.
AAC devices can also expand on what a child is already trying to say. A child could be able to say the word “milk,” but they might want to say that they don’t want milk or they want more milk, said Candice Steel, B.S., SLP-L, ATP, speech-language pathologist and AT specialist with the Scottsdale Unified School District. “We want to help to expand the child’s message when they have more to say.”
If a parent thinks their child could benefit from an AAC device, they can speak to the child’s private or school-based speech therapist and to see if it would be appropriate to bring in an AAC specialist. The parent would also need to also contact their child’s DDD support coordinator to initiate the request process through their health plan.
AzTAP offers a lending library so people can try out all types of assistive technology including AAC devices at no expense. AzTAP is federally funded and works through Northern Arizona University, with an office in Phoenix.
“Our role is to work with families to become more educated about their choices,” said Clayton Guffey, MSW, CRC, ATP, CEAC, program director for AzTAP. “We serve as a beginning resource for them prior to an evaluation so they can identify which resources to ask about and to consider.”
AzTAP can also offer suggestions for families who aren’t enrolled in DDD or in one of the health plans, Guffey said. AAC devices can be provided by a child’s school when appropriate to access schoolwork, or could sometimes be covered through private insurance. Device manufacturers also have funding departments that can assist parents, Guffey noted.
Interested parents can contact AzTAP to request an initial consultation, currently taking place over video call. Once AzTAP and the parent identify an appropriate AAC device, AzTAP can ship it to the parent and provide additional training and consultation for the device over the phone.
AAC in action
Krista Howard, age 34, has cerebral palsy and uses an AAC device to communicate, navigating about 144 buttons per page on her system. Krista attends Arizona State University and Estrella Mountain Community College, pursuing a degree in speech and language pathology. She’s also worked full time for the Gompers program, coaching staff and participants in communicating with AAC devices and has assisted young AAC users as a paraeducator through Arizona’s Empowerment Scholarship Account (ESA) program. She speaks at conventions and is one of the co-authors of a book coming out next year, Exceptional AAC Leaders.
Krista encourages parents to act as early as possible if they think their child would benefit from AAC.
“Don’t give up,” Howard recommended to parents. It took her some time to become comfortable using her AAC device, and she now uses it extensively as a college student and as a professional. Howard also advocates the importance of peer support and helps to facilitate groups in Arizona called Out and About, where individuals of all ages meet and use their AAC devices together. Wentland and co-founders Dr. Caroline Musselwhite and Deanna Wagner also help facilitate these groups.
While an AAC device could be viewed as a sign of a disability, both Howard and Wentland prefer to see it as a gateway to an individual’s potential.
“It’s more than learning your child’s wants and needs,” Wentland said. “AAC gives people the ability to communicate their thoughts and feelings.”
As this change to the AAC benefit evolves, look for more information from the health plans and from DDD. Parents are encouraged to stay up to date by visiting the DDD website or by contacting their child’s health plan, Mercy Care or UnitedHealthcare Community Plan. A list of FAQs are available on the DDD website here, and parents can also sign up for AAC update emails here.
It’s also important for families to keep the lines of communication open with their support coordinator and other members of their child’s care team if this change affects them. “There will be a transition period, but the heart and passion is there to make this process as good if not better than before,” Steel said. “All the parties involved truly want to provide quality services to help meet the needs of individuals with disabilities.”
AAC Community Information Sessions
Mercy Care and UnitedHealthcare Community Plan will host sessions to provide more information on this change. Session schedule:
Monday, Dec. 14, 11 a.m.
Thursday, Dec. 17, 4 p.m. & 7 p.m.
Monday, Dec. 14, 9.a.m.
Tuesday, Dec. 15, 6 p.m.
For More Information: