Assistive Technology for ALS: The Scott A. Mackler, MD, PhD Program
Assistive technology for ALS empowers people living with the disease to remain active, independent, and connected to everyday life. The Scott A. Mackler, MD, PhD Assistive Technology Program provides access to essential assistive devices, training, and support services, many of which are not covered by insurance.
Through this program, people living with ALS can access tools that help them communicate, interact with technology, navigate their homes safely, and stay connected with family, caregivers, and the world around them.
About the Scott A. Mackler, MD, PhD Assistive Technology Program for ALS
The Scott A. Mackler, MD, PhD Assistive Technology Program was established through the generosity of the Mackler family, friends, colleagues, and other supporters.
Dr. Scott Mackler, a renowned addiction researcher at the University of Pennsylvania, lived with ALS from 1999 to 2013. His experience inspired a vision for expanding access to assistive technology that could help others living with ALS maintain independence and quality of life.
Scott Mackler (center) with his family in 2001.
ALS United Mid-Atlantic pioneered a comprehensive approach to assistive technology in 1993. In 1996, the organization hired a full-time assistive technologist to ensure people with ALS had access to emerging communication technologies.
Thanks to Dr. Mackler’s vision, the organization became one of the first in the country to establish both:
- A dedicated Assistive Technology Program
- A loaner equipment closet for people living with ALS
Today, the Mackler Program continues to provide access to essential devices and services that help individuals living with ALS maintain independence and dignity as the disease progresses.
Guidance and Support for Assistive Technology
Assistive technology is a rapidly evolving field. Innovations such as tablets, smartphones, and smart home systems have transformed the way people with ALS communicate and interact with their environment.
However, no single device works for everyone. Because ALS is a progressive disease, selecting technology that can adapt over time is critical.
The Mackler Assistive Technology Program provides a trained assistive technologist who works directly with individuals living with ALS to:
- Identify the most appropriate assistive technology solutions
- Demonstrate how devices work
- Provide training
- Ensure technology evolves as needs change
With the help of assistive technology devices, people living with ALS can:
- Use the internet
- Send and receive email
- Use telephones and communication devices
- Control smart home technology
- Deliver public presentations
- Safely navigate their homes
- Stay connected to family, friends, and caregivers
If you or a loved one is living with ALS and would benefit from assistive technology devices or services, contact Alisa Brownlee, ATP, CLIPP, CAPS, WSP, CEAC/Mastery at 215-485-3441 (call/text) or alisa@alsmidatlantic.org, to learn about eligibility, device availability, and clinic integration.
What Is Assistive Technology for ALS?
Assistive technology includes tools, devices, and smart solutions that help people living with ALS maintain independence and improve daily life.
These technologies help individuals:
- Communicate effectively
- Interface with phones, tables, and computers
- Control their environment
- Maintain independence
- Enhance safety at home
- Stay socially connected
- Improve quality of life
We work to ensure assistive technology services are fully integrated into ALS clinics and multidisciplinary care centers across our region.
Why Assistive Technology Matters in ALS Care
As ALS progresses, physical abilities may change, but dignity and connection should not. Early access to assistive technology can:
- Reduce caregiver burden
- Improve safety
- Extend independence
- Enhance communication
- Support emotional well-being
Our program helps bridge financial and access gaps so individuals can receive critical equipment when they need it most.
Services Provided by the Mackler Program
The Assistive Technology Program offers a wide range of services designed to support people living with ALS and their caregivers.
Services include:
- Comprehensive assessment of augmentative communication and assistive technology needs
- Assistance with submitting insurance paperwork for device coverage
- Loaner equipment for those who are uninsured or on hospice
- Referrals to financial assistance resources
- Evaluations at ALS Clinics throughout our region
- Connections with assistive technology consultant services in outlying geographic areas
- Virtual home visits for assistance with troubleshooting and technology support
- Training sessions for community‐based agencies
- Collaboration with other organizations and community agencies
- Assistance with free and low-cost assistive technology that can be downloaded from the web
- Assistance in finding suitable applications for smart devices (phones/tablets)
- Virtual home assessments for accessibility and safety modifications
- Accessibility Program for financial assistance with stair glides (straight steps only) and modular ramping
- Smart home technology virtual assessments
These services ensure people living with ALS can access the tools and resources needed to maintain independence and safety.
Assistive Technology Video Resource Library
Explore expert-led demonstrations and educational videos designed for people living with ALS, caregivers, and healthcare providers:
Creating a YES/NO/MAYBE communication system
This video teaches people with ALS and their caregivers how to establish a simple yes/no/maybe communication system. It can be a life-saving tool for clear communication.
Augmentative/Alternative Communication for People with ALS
In this podcast episode, assistive technology specialist Alisa Brownlee and speech-language pathologist Amanda Cuth discuss communication strategies for people living with ALS.
Topics include:
- Speech therapy strategies for ALS
- Voice preservation techniques such as voice banking and voice cloning
- Communication technology solutions
- Emergency communication planning
- Emotional challenges associated with communication changes
Voice and Message Banking
Learn how AI helps people with ALS save and use their own synthetic voice. Ron Brady’s story highlights the power of technology in maintaining personal communication.
Home Modifications for People with ALS
In this podcast discussion, assistive technology specialist Alisa Brownlee and accessibility expert Tony Heyl discuss how proactive home modifications can improve safety and independence for individuals living with ALS.
Topics include:
- Accessibility planning
- Progressive home modifications
- Adaptive equipment
- Strategies for maintaining independence at home
Getting Help with Assistive Technology for ALS
If you or a loved one is living with ALS and could benefit from assistive technology devices or services, we encourage you to reach out.
Contact:
Alisa Brownlee, ATP, CLIPP, CAPS, WSP, CEAC/Mastery
215-485-3441 (call or text)
alisa@alsmidatlantic.org