Patty’s Story: The Fight for Speech Augmentative Communication Devices

By Liza Jones
Attorney for the Utah Disability Law Center

In September 2012, the Utah Court of Appeals overturned a state Medicaid policy denying coverage for speech augmentative communication devices (SACDs) to adults over 21.  

Since that ruling, the Disability Law Center (DLC) has been working with speech therapists to let people know that they can now ask for communication devices for adults.  SACDs were made famous by world-renown scientist, Stephen Hawking.

Patty Olguin

The appeal was originally filed in 2010 by the Disability Law Center on behalf of Patty Olguin and Nicholas Conley, whose requests for SACDs were denied by Utah’s Medicaid agency. 

Olguin was diagnosed with multiple sclerosis at the age of eight. After a medical procedure in 2002, she had a stroke and lost the ability to speak clearly. Since then, she has been unable to communicate effectively with the people around her. 

But Patty knows what she wants to say. For a decade, she has relied on nursing staff to guess at what may be causing her to feel pain or discomfort. Choosing the color of a shirt or a picture on a wall may seem small. For Patty, however, it represents the beginning of freedom and independence.

Conley has cerebral palsy. Until the age of 22, the school district provided him with an SACD. After leaving school he lost access to the device. Ever since, he had been unable to communicate his most basic wants and needs. He missed communicating meaningfully with friends and family.

During the appeal, DLC Attorney Robert Denton argued that Medicaid’s policy of denying SACDs to Utahns over 21 should be overturned because it violates the Federal Medicaid Act.

The Court agreed, ruling that Utah Medicaid did not have the discretion to deny SACDs to adults. It also agreed that the policy was not reasonable, and illegally treated people differently. The decision makes it clear that the agency cannot deny adults many of the other services and devices it covers for children.

When DLC staff visited Olguin to tell her she had won, her smile was immediate and overwhelming. Our hope is that all eligible Medicaid clients will get the services and equipment they need. Like Nicholas and Patty, we feel the decision has the potential to be far reaching.

If you receive Medicaid benefits and have been denied a SACD or other assistive technology, please contact the Disability Law Center at 800-662-9080 to learn about the services we can provide to you.

*The Disability Law Center (DLC) is a private, non-profit organization designated by the governor as Utah’s Protection and Advocacy (P&A) agency.  Our mission is to enforce and strengthen laws that protect the opportunities, choices and legal rights of Utahns with disabilities.  Our services are provided free of charge.

Refurbishing a wheelchair for Dillon

One of the joys of working at the Utah Assistive Technology Lab is getting to know clients like Cache Valley 9-year-old Dillon Lundahl. 

The AT Lab has been working with Dillon since he was six, building and modifying a variety of devices for him to use in play, therapy and everyday life.

While Dillon's development is normal for his age, he struggles with mobility and balance. One such device the Lab came up with was a stand Dillon could use during physical therapy to play the Wii Fit. 

This month, Clay refurbished Dillon's power wheelchair and fabricated a basket to attach to the chair so Dillon can carry his school stuff with ease.

Clay said, "It is fun to be part of Dillon's life - we get to know people in the community, and we just feel lucky we are the ones getting them the assistive technology they need to continue to live independently."

Cache Valley Volunteer of the Month: Congrats Victor Jewkes

Volunteering at the AT Lab can be an adventure, and to recognize the many hours of hands-on help Victor Jewkes of MedSource has given to the lab, we nominated him for the Cache Valley Volunteer of the Month for January.

The award, given by the Cache Valley Volunteer Center, was presented to Victor today at the Pioneer Valley Lodge. 

He has been a consistent and conscientious volunteer at the Utah Assistive Technology Lab. Using his professional expertise, Victor spends much of his own time fixing and refurbishing assistive technology for residents of Cache Valley. 

Left, Clay Christensen, AT Lab Coordinator;
middle, Victor Jewkes of MedSource;
right, Cameron Cressall, AT Lab assistant.

From mobility equipment to ramps and lifts, Victor goes the extra mile to make sure people with disabilities have the working AT they need, regardless of their ability to afford it. His can-do attitude and a love of serving others makes Victor a great advocate of the AT Lab and people with disabilities.

Victor said, "This means more than you know. I appreciate the honor, and want to recognize the AT Lab for all that it does for people with disabilities."

UATF grant helps 4-year-old get some wheels

Four-year-old Emma received a grant from the Utah Assistive Technology Foundation so she could get a power wheel car to give her mobility. The Utah Center for Assistive Technology provided the adaptations to the car. 

By Rebecca Bell
Utah parent of child with special needs

The world of special needs parenting can be a magical one..... 

A couple of weeks ago we took a trip to Salt Lake City to the Utah Center for Assistive Technology (UCAT). What an amazing and humbling experience it was. At UCAT they adapt every day items for people with disabilities. 

Emma test driving her new wheels.

UCAT's Ed Whiting chatting with Emma.

For Emma's 4th birthday, they gave her an adorable VW Beetle power wheels car. It has been adapted with a full support seat and 5 point harness. They re-wired it so that she just has to push a big button on the steering wheel rather than foot pedals. 

It was incredible to watch them work on a toy for four hours at no cost to us [UCAT provides labor for Go Baby Go cars free of charge, and the UATF grant covers the cost of the car]. I seriously had a lump in my throat through most of the visit, and when it was time for her to try it out I could hardly contain myself. 

The UCAT team working on adapting the car.

Play is so important and Emma doesn't have many things that she is able to play with independently. She is absolutely in LOVE with this little car. Thank you for making our little girl's year. You are with out a doubt, all in the right profession.  

Go Baby Go!

Upcoming training: Serving People with Disabilities of Various Cultures

The Center for Persons with Disabilities will be presenting a free training in Provo Jan. 21st.

The focus is Serving People with Disabilities of Various Cultures. Everyone is welcome!

Topics will include:

• Assumptions, Stereotypes and Generalizations
• Culture and Cultural Competency
• Communicating with People who have Various Types of Disabilities
• Service Animals and Other Accommodations
• Effects of Violence and Trauma on Disability
• Response to Victims with Disabilities 

Presented in partnership with USU, UCASA, UDVC, the Sanderson Center and Human Capabilities.

Provo, January 21st, 9:00 a.m. to noon, County Administration Building 100 East Center, Rm. L700.

Please RSVP to Lynelle at lynelle.chenn@usu.edu or 435-797-8807.