Families urge Providence to keep vital at-home speech program
PORTLAND, Ore. (KOIN) — Families are worried about what's next after Providence Health announced it is gutting an essential at-home speech program.
The family of Laura Green told KOIN 6 News the idea of losing access to the program would shatter lives since communication is a vital lifeline for them.
Green has ALS, robbing her of the ability to walk, move and speak and confining her to a wheelchair in her Newberg home. But thanks to the program, using a special device, she's able to communicate through it to her family members.
The relentless disease weakens muscles and attacks the nerve cells that control them, leaving her immobile and making it difficult to connect to loved ones.
"She's my best friend, so it's an honor to take care of her," said Sara Weibel, Green's daughter. "We're already dealing with so much as a family through this horrible disease, this is just another hit that we're taking that is not needed."
Speech-Language Pathologist Kathryn Waller, CFY-SLP, explained that Green uses something called a Tobii Dynavox I-13. It's a device that allows Green to communicate by selecting words and phrases with her eyes.
Green's family said through this technique, Waller was able to teach her to express herself, despite losing her natural voice. They've even been able to bond over games.
"It's been kind of a struggle to see her not speak the words that she wants to," Weibel said.
As of Nov. 8, Providence said it is cutting the Augmentative and Alternative Communication Program that supports Waller's position, leaving a major gap for the family. Waller said it is the only at-home service in the area for those in and need and she has no idea how they will move forward.
"Communication is a human right and we have to protect it," Waller said.
KOIN 6 News reached out to Providence for comment and they gave a response indicating they are committed to figuring out how to support patients going forward.
"Our firm commitment to providing high quality, compassionate skilled in-home care remains unchanged," a Providence spokesperson said. "Since making the announcement, based on valued feedback from referral sources and community partners, we have decided to take additional time to further review and understand the best way to support these patients going forward."
Green and her family are hoping Providence will fully reverse the decision to close the program.
"Please see us as people deserving of respect, dignity and consideration," Green said.
Weibel said it's just another battle they're determined to fight and win.
"This is huge, this is the way my mom is able to express her love to spend these days that we have together in a meaningful way and I don't want that to be taken away," she said, wiping away tears.
Families have sent nearly 2,000 letters to Providence executives — via an Oregon Nurses Association campaign — urging them to bring the program back.
Below is the ONA's statement via their campaign website urging co-signers to bring the program back.
Providence Home Health and Hospice is whittling away important services for the community. This year alone, they have eliminated palliative care and remote monitoring services which are vital to preventing unnecessary and costly hospitalizations. Now, they have announced their intention to eliminate the Augmentative and Alternative Communications (AAC) program on November 8, 2024. The AAC Speech Language Pathologists who are being laid off in this closure teach patients who cannot communicate through traditional means (verbal, gestural, written) to use alternative forms of communication. They are specially trained in these forms of communication and eliminating this program and these employees will, without question, result in worse health outcomes for patients.
Tell Providence Executives that these patients deserve a voice! Stop the closure of the AAC program and keep our AAC Speech Language Pathologists doing this life-changing work!
Below is the full statement from Providence Health in response to a KOIN 6 News inquiry asking about the calls to reinstate the program.
Caring for patients in their homes is a privilege and our caregivers are often there at sacred times in patients’ and families’ lives. Our firm commitment to providing high quality, compassionate skilled in-home care remains unchanged. In order to provide the best care possible, we’ve restructured some of our teams this year and focused on our core services.
This week we announced we’re sunsetting the Augmentative and Alternative Communication (AAC) specialty service at Providence Home Health Portland. Since making the announcement, based on valued feedback from referral sources and community partners, we have decided to take additional time to further review and understand the best way to support these patients going forward. We’ll continue caring for all our patients receiving AAC through their current care plan.
The truth is historically we’ve provided specialty services that are not traditionally part of Home Health, such as Palliative Care, Remote Patient Monitoring and AAC services. While there have been impacts to some of our valued Home Health and Hospice caregivers whose roles were eliminated this year, the majority of them were offered and accepted comparable positions on our teams. In addition, several of our Hospice caregivers have accepted our offer for voluntary reductions.
Likewise, in the last few years, we have reduced the number of management positions in both Home Health and Hospice through attrition and some layoffs.