IoT Privacy Risks and Benefits for People with Disabilities

Author: Future of Privacy Forum
Published: 31 Jan 2019 - Updated: 29 Oct 2026
Publication Type: Informative

Table of Contents:
Synopsis - Definition - Overview - FAQs - Insights, Updates - Related Content

Synopsis

This report summarizes a 2019 paper from the Future of Privacy Forum, a nonprofit focused on data privacy, examining how Internet of Things devices in homes, cars and on the body affect people with disabilities. Key facts include five recommendations for companies and policymakers, covering design, research, privacy safeguards, collaboration and public awareness. It matters because the same connected devices that reduce reliance on human assistance also collect highly sensitive information about health, routines and location, so privacy can be gained or lost depending on how products are built. The guidance is useful for people with disabilities and seniors who rely on smart technology, as well as for designers, advocates and policymakers, and it was developed in consultation with the American Association of People with Disabilities Technology Forum.*

At a Glance

• 1 - The paper was funded by the Comcast Innovation Fund.
• 2 - Accessibility should be built in at the earliest design stage, not added later.
• 3 - Policymakers are urged to weigh added privacy risks against the autonomy these devices provide.
• 4 - IoT tools can reduce the need for human helpers, but the data they gather can reveal sensitive details about health and daily life.

Topic Definition

Internet of Things

The Internet of Things (IoT) is the network of everyday physical objects, such as thermostats, door locks, speakers, cars, medical monitors and wearable fitness trackers, that contain sensors, software and internet connections allowing them to collect data, communicate with each other and be controlled remotely. For people with disabilities, IoT devices often serve as assistive technology, letting users adjust their surroundings by voice or smartphone, receive alerts and share health information with caregivers, while also raising questions about how the personal data they generate is stored, used and protected.

Overview

In January 2019, the Future of Privacy Forum released The Internet of Things (IoT) and People with Disabilities: Exploring the Benefits, Challenges, and Privacy Tensions. This paper explores the nuances of privacy considerations for people with disabilities using IoT services and provides recommendations to address privacy considerations, which can include transparency, individual control, respect for context, the need for focused collection and security.

"Internet of Things devices in homes, cars and on our bodies can improve the quality of life for people with disabilities - if they are designed to be accessible and account for the sensitive nature of the data they collect," said Jules Polonetsky, CEO of the Future of Privacy Forum. "We expect this first-of-its-kind paper to inspire collaboration among advocates, academia, government, and industry to 'bake in' privacy and accessibility from the start of the design process."

"Data-driven innovation has created new tools that can improve disabled people's safety, mobility, and independence, leading to enhanced privacy," said Henry Claypool, Policy Director of the Community Living Policy Center at the University of California, San Francisco, Technology Consultant to the American Association of People with Disabilities and FPF Senior Fellow. "However, companies and advocates should recognize that the IoT can bring unique privacy considerations."

FPF recommends companies and policymakers follow these recommendations to improve the experiences of people with disabilities when they use IoT-enabled devices and respect their privacy:

• 1. Prioritize inclusive design:

  Accessibility and the privacy of people with disabilities should not be an afterthought for the IoT and new technology developers--people with disabilities should be included in the design of IoT technologies. The appropriate timing for integrating accessibility is during the earliest possible stage of design.

• 2. Promote research:

  In order to successfully build the IoT with universal or accessible design, research - both qualitative and quantitative - is needed to understand how people with disabilities utilize the IoT and feel about the current privacy landscape of the IoT.

• 3. Privacy by Design approaches should consider people with disabilities:

  Companies should take into account the sensitive nature of the data collected from the IoT used by people with disabilities and address those considerations in the design of IoT products.

• 4. Foster cross-sector collaborations:

  Advocates, academia, government, and industry should work together to develop IoT solutions that meet the needs of people with disabilities.

• 5. Enhance awareness of data risks and benefits:

  Policymakers should consider not only the potential enhanced risks that people with disabilities face when using the IoT, but also the enhanced autonomy that these very same technologies provide. Members of the disability community should consider becoming engaged in policy processes and voicing their views on the privacy challenges that they face when using IoT devices and services.

IoT devices and services are empowering people with disabilities to participate more fully and autonomously in everyday life by reducing some needs for human intermediaries or accommodations. In addition to the potential benefits of IoT devices and services for people with disabilities, unique privacy risks and challenges can be raised by the collection, use, and sharing of user data. Depending on the circumstances, privacy can be enhanced or diminished by IoT technologies, creating potential tensions between privacy gains and losses.

FPF received support for the paper from the Comcast Innovation Fund and consulted with the American Association of People with Disabilities (AAPD) Technology Forum.

The Future of Privacy Forum is a non-profit organization that serves as a catalyst for privacy leadership and scholarship, advancing principled data practices in support of emerging technologies.

Frequently Asked Questions

NOTE: Researched FAQs by Disabled World (DW)

What kinds of data do smart home devices typically collect?

Smart home devices commonly record voice commands, usage times, device settings, location data and sometimes audio or video. Health-related devices may also log heart rate, sleep patterns or medication reminders, which makes clear privacy settings especially important.

How can I check what data a smart speaker stores about me?

Most major smart speaker makers let users review and delete voice recordings through the companion app or an online account dashboard. Look for privacy or history settings, and turn on automatic deletion if it is offered.

Can IoT devices replace a personal care attendant?

IoT devices can handle some tasks such as turning on lights, locking doors or sending alerts, which may reduce how often help is needed. They do not replace hands-on personal care, and most users combine technology with human support.

What is Privacy by Design?

Privacy by Design is an approach in which privacy protections are built into a product from the start rather than added later. It includes collecting only the data that is needed, using secure defaults and giving users clear control over their information.

How can people with disabilities secure their connected devices?

Changing default passwords, installing software updates, using two-factor authentication where available and placing devices on a secure home network all reduce risk. A trusted family member or support worker can help set these up if needed.

Do voice assistants work for people with speech disabilities?

Voice assistants can struggle with atypical speech, although accuracy has improved and some platforms offer settings aimed at better recognition. Text input, switch access or companion apps are common alternatives when voice control is unreliable.

Are there accessibility standards for smart devices?

General digital accessibility standards such as the Web Content Accessibility Guidelines apply to device apps and online interfaces, and some countries have specific rules for communications technology. Checking the manufacturer's accessibility statement is a good starting point.

Can sharing health data from wearables affect insurance or employment?

In some situations health data shared with third parties could be used in ways users do not expect. Reading privacy policies, limiting sharing and checking what protections apply in your country can help reduce that risk.

Insights, Analysis, and Developments

Editorial Note: Connected technology has moved from novelty to necessity for many disabled people, with voice assistants, smart locks and remote monitoring now handling tasks that once required a caregiver or a phone call. That shift brings a trade-off the Future of Privacy Forum paper captures well: the more a device helps, the more it tends to know, from medication schedules to movement patterns inside the home. Bringing disabled users into testing early can reveal both accessibility gaps and privacy blind spots before products ship, which is cheaper and fairer than fixing them later. For anyone choosing a smart device today, checking what data it collects, where it is stored and whether its settings can be controlled without sight, hearing or fine motor skills remains a practical first step.*

Attribution/Source(s): This quality-reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally issued as a press release by Future of Privacy Forum and published on 31 Jan 2019. Last updated on 29 Oct 2026. This content may have been edited for style, clarity, or brevity.

* Editorial additions by Ian C. Langtree.