Interview 3/18/2020

Transcript:

> Marcie Roth: I think our greatest challenges have less to do with any characterization as being vulnerable and more to do with the fact that people are not recognizing that in fact one billion people across the globe have disabilities.
Our biggest challenges for Covid-19 are the fact that our needs to maintain our health are being completely overlooked.
We are particularly good at navigating challenging situations because we deal with them on a daily basis. We can be an asset rather than a liability.

>> There are people who say that it is one of the — undoubtedly maybe underemphasized parts of Covid-19, but nonetheless recognized parts, that inevitably people who have medical requirements, who don’t necessarily — aren’t necessarily suffering from Covid-19 are going to end up the worse for this, because, I mean, for example, people who have got cancer or other long-term medical conditions may end up, you know, falling by the wayside or their treatment is not being taken up in the way that is needed.
As regrettable as that is, is not what you’re saying sort of just similar for some disabled people rather than specific to disabled people.

>> Marcie Roth: As vital as it is, that we’re focusing on the immediate issues and how to assist everyone to be able to physically distance themselves. One of the things that we can do to flatten the curve, is to give people who need hands-on assistance, to give people who need information in accessible formats, like people who are Deaf who need information delivered in sign language, so that they can take personal protective measures.
There are so many things that we can do that are not especially complicated, that will really help to reduce the spread and give people the opportunity to be assets throughout the process.

>> Is one issue that it’s a little bit imprecise at the moment just who could be particularly vulnerable and what the advice is in terms of people with certain disabilities, should be doing in order to try to protect themselves.

>> Marcie Roth: We are concerned about people who are not getting information because the information is either too complex and we’re not getting people easy read here in the U.S., they have issued waivers to allow people to be placed directly into long-term care facilities from their home.

>> Is there potentially one upside out of this in that people as this sort of, this whole trend of self isolation of people working from home has gathered pace, that people are realizing that actually this sort of — the issues of accessibility of getting to a workplace, even though a lot of companies and corporations have made great strides in terms of access for disabled people that actually it is forcing people to think of more creative ways of working more inclusive ways of working, which could end up perhaps working in the long term to the benefit of disabled people.

>> Marcie Roth: The opportunities to hire people with disabilities and for us to be able to use technology for the work that we do, this — as we navigate through this pandemic, there will be a lot of learning and we hope to do a lot of teaching about what it takes to provide the strategies, to make this sort of workplace arrangement successful for many, many people who are ready and able to work.

Return to the Emergencies, Disasters, and Climate Resilience main page.

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WID has been involved in many disability inclusive disaster preparedness and response trainings over the past decade, including the following collaborations:

American Red Cross

Together with the American Red Cross (ARC), WID launched an innovative national training, awareness, and action program to help ARC staff and volunteers better serve people with disabilities during disasters.

WID’s Deputy Director, Thomas Foley, a member of the American Red Cross
National Diversity Advisory Council, works to improve emergency preparedness and disaster response by ARC staff and volunteers for people with
disabilities; facilitates collaboration between the ARC and local
community-based disability organizations; and increases understanding of the needs of people with disabilities in disaster situations.

FAST Trainings

WID’s Deputy Director, Thomas Foley also works with the California Department of Social Services as a trainer on their Functional Assessment Service Team (FAST) program to better support people with access and functional needs during a mass care and shelter incident.

Paralysis & Disaster Readiness Educational Resources

WID received a grant from the Christopher and Dana Reeve Foundation to create disability-specific disaster readiness educational materials. Visit our Paralysis, Disability and Disaster Readiness page to find videos, pamphlets, policy papers, and more!

 

Return to the main Disability Inclusive Disaster & Climate Resilience page.

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For more information, contact Thomas Foley, WID’s Managing Director, at tom@wid.org.

If you are having technical issues or accessibility issues on this site, email wid@wid.org.

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3/12/2020

Recommendations for Immediate Action Regarding: The Rights & Needs of People with Disabilities Who Use Personal Assistance Services & Supports Throughout COVID-19 Planning & Response

Purpose:

This document provides recommendations for rapid response solutions for federal and state governments to close the real and anticipated gaps in the COVID-19 outbreak and public health emergency-related continuity of operation for people with disabilities, older adults, and people with access and functional needs. Our recommendations include contingency plans for disability and aging services, supports, and programs funded directly with federal or state funds or through federal assistance to state, local, tribal and territorial governments and non-government providers.

These recommendations are provided by the nation’s leading experts on the rights and needs of people with disabilities before, during and after disasters, including public health emergencies. Their expertise includes addressing and closing the gaps in sustaining services for a much broader demographic who will also be impacted by disruptions in short and long-term services and supports at home and in community-based, and intermediate and long-term facilities. This includes people with access and functional needs, disabilities, older adults, children, people experiencing homelessness, living in poverty, and people with health and medical needs related and unrelated to COVID-19.

Currently, there is no indication that there is an effort underway to anticipate and meet the personal assistance services (aka personal attendants, direct support professionals, personal care services, formal and informal caregivers) of millions of people who depend on the continuity of their services without disruption. Failing to address these needs will likely result in a need for massive emergency response.

Recommendations:

Immediately suspend or waive lengthy and restrictive processes and procedures, and implement rapid response solutions to fill real or anticipated gaps in health, safety, dignity, and independent living services and supports by;

• Allowing people receiving services and supports to hire on the spot without background checks, processing documents or verifying citizenship to eliminate any unnecessary delay;
• Waiving restrictions on hiring their spouse, partner, and family members;
• Respecting the rights of people with disabilities to make their own choices in all aspects of their COVID-19 contingency plan when their services and supports may be interrupted. This includes choosing who provides assistance when related to their bodily functions, daily life, and individual needs, by eliminating administrative barriers;
• Suspending or waiving overtime limiting regulations for personal assistance services so that people with limited staff and/or support network, staff and/or support network who are ill, quarantined or otherwise unavailable, and for individuals in rural areas with limited resources to continue to receive long-term services and supports;
• Allowing overtime for family members and live-in support providers who are also paid employees;
• Guaranteeing personal assistance service providers paid sick time to encourage providers to stay home and decrease spreading infection; and
• Providing funding to community organizations such as Independent Living Centers and developmental disability service providers to establish or expand expedited recruitment processes for emergency back up assistance for all formal and informal, government and non-government supports and services to close COVID-19 gaps and keep people independent.

Federal public health and medical resources may be considered or utilized to fill extreme gaps in services. These personnel are typically unfamiliar with the obligations of the government to people with disabilities and older adults living in their own homes and in the community.

These government personnel will need immediate training and technical assistance on self-directed assistance, optimizing health, safety, dignity, and independence as imperatives for maintaining the civil rights of people with disabilities and older adults whether they are at home, in community-based settings, or institutional facilities.

The members of the Partnership for Inclusive Disaster Strategies can identify qualified experts to deliver this training and technical assistance.

The government resources that may be under consideration whose staff who will need training include:

• National Disaster Medical System- Disaster Medical Assistance Teams
• Medical Reserve Corps
• Public Health Service
• National Guard

Loosening regulations and providing flexibility does not eliminate the obligation to maintain paid services and supports provided by qualified personnel. People with disabilities, older adults, and people with access and functional needs must not be expected to rely on volunteers and charity organizations as a substitute for the government’s failure to prepare for maintaining continuity of operations and resulting gaps in services.

However, in the absence of planning and adequate resources to meet obligations under federal civil rights laws, non-government resources may be considered by state, county, or local officials. These volunteers MAY be able to provide in-home support if provided with appropriate and inclusive training and Personal Protective Equipment including:

• Community Emergency Response Teams
• Students from schools of Nursing, Physical Therapy, Occupational Therapy, Allied Health, and other disciplines
• Qualified members of voluntary organizations active in disasters and faith-based groups

For more information on disability rights and inclusion throughout the COVID-19 outbreak and all public health emergencies and disasters please contact:

Germán Parodi and Shaylin Sluzalis, Co-Executive Directors

The Partnership for Inclusive Disaster Strategies 

215-971-0660 and 570-777-0268

dart@disasterstrategies.org

www.disasterstrategies.org 

Marcie Roth, Executive Director and Chief Executive Officer

World Institute on Disability

301-717-7447

marcie@wid.org

www.wid.org

Todd Holloway, Chair

National Council on Independent Living Emergency Preparedness Subcommittee

253-830-4279

toddh@cfisouth.org

www.ncil.org

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To read our Call to Action regarding the rights & needs of people with disabilities in COVID-19 planning and response, follow this link.

Over 100 organizations have signed on to our Call to Action. To sign on to the COVID-19 Call to Action, fill out this form.

To see live updates of organizations supporting this statement, spreading the message, and doing the good work, please click here: https://tinyurl.com/rel72da

Open letter to Vice President Mike Pence available at this link.

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Update 3/12/2020: 

Read our Recommendations for Immediate Action Regarding: The Rights & Needs of People with Disabilities Who Use Personal Assistance Services & Supports Throughout COVID-19 Planning & Response.

Over 100 organizations have signed on to our Call to Action. To sign on to the COVID-19 Call to Action, fill out this form.

To see live updates of organizations supporting this statement, spreading the message, and doing the good work, please click here: https://tinyurl.com/rel72da

Update 3/10/2020: To sign on to the COVID-19 Call to Action, fill out this form.

Open letter to Vice President Mike Pence available at this link.

We will continue to update as information becomes available.

NATIONAL CALL TO ACTION: MARCH 3, 2020

There is an urgent need for Government to address the rights and needs of persons with disabilities throughout all COVID-19 planning and response.

For optimal community-wide outcomes, we must:

1. Close existing gaps
2. Minimize Impact
3. Optimize limited resources

The disability advocacy organizations identified below and a coalition of disability rights and emergency management experts from across the country are issuing an urgent call to action for immediate strategies and solutions from the federal government and governments at every level, including local, state, tribal and territorial, to address the specific needs of persons with disabilities throughout the COVID-19 outbreak and all public health emergencies.

 

Persons with disabilities require the same resources and assistance that everyone does – adequate information and instructions, social and medical services, and protection from infection by those who have contracted the virus. However, some persons with disabilities may have needs that warrant specific steps by the public and private sectors that may not be necessary for others. Below we set out some particular areas where these steps are necessary and which do not appear to be addressed by current strategies. 

We urge the federal government and governments at every level to address expressly each of the areas described below in their planning and response.

Background

One in four adults in the US has a disability. Globally, well over 1 billion people have disabilities. Children and adults with disabilities and older adults are 2-4 times more likely to be injured or die in a disaster due to a lack of planning, accessibility, and accommodation. Most people with disabilities are not inherently at a greater risk for contracting COVID-19, despite misconception that all people with disabilities have acute medical problems.

Actions taken now can make a big difference in COVID-19 outcomes for the whole community, as well as public health emergency response in the future. 

One of the wisest actions our communities can take immediately is to ensure that people have what they need to stay healthy. This includes minimizing unnecessary exposure to infection and circumstances that contribute to preventable medical conditions. Protecting our limited medical resources is something to which everyone can contribute. Among the most important steps is to ensure the continuity of operations for services, supplies, and support that people with disabilities and older adults depend on to maintain their health, safety, dignity, and independence in the community. Continuity of operations means that agencies, community, health maintenance, medical, transportation, and other essential service providers are able to continue performing essential functions under a broad range of circumstances without interruption.

 

Continuity of Operations and Services

Many persons with disabilities rely on uninterrupted home and community services and supports. If businesses or government agencies close or restrict staff, there is a risk that these services will be disrupted. Ensuring continuity of operations means that public agencies, community organizations, health care providers, and other essential service providers are able to continue performing essential functions to meet the needs of persons with disabilities. Government strategies must address disruption in services and develop contingent sources of comparable services.

 

Access to Information

Persons with disabilities must be able to receive timely and accessible information about what steps they must take to minimize the risk of infection; what actions are being taken that may affect their living arrangements; and the availability of services, caregivers, medication, and other changes critical to their personal planning and preparedness that may directly impact their daily life.

Instructions must also be provided for service providers in accessible formats to maximize their health and minimize the spread of infection.

Government entities must provide communication that is equally effective to all audiences at all times. This includes ensuring that all televised public announcements are live-captioned and provided by qualified sign language interpreters. Websites and other digital and electronic information must be accessible to people with vision, hearing, learning, and dexterity disabilities, and to individuals who do not read print because of their disability. This must include information to be delivered via assistive technology such as text-to-speech devices and Braille readers. All communications must utilize plain language to maximize understanding and the information must be provided in multiple languages for people with limited English proficiency.

 

Meeting Daily Living Needs

Like everyone, persons with disabilities have ordinary daily living needs, including access to food (in some cases delivered meals and meals that meet specific dietary requirements), housing, healthcare, in-home, school and community support, as well as maintaining employment and access to accessible transportation. If businesses close or their capacity is greatly reduced, these needs cannot be met. Government planners must address how persons with disabilities can continue to meet these needs of daily living, including the possible need to deliver meals, supplementary and alternate disability supports, and other services to persons with disabilities. Providers of these services must have the personal protective equipment and instructions needed to minimize exposure and spread of infection.

 

Living Arrangements and Isolation or Quarantine

We have seen how COVID -19 may affect persons with disabilities and their paid and unpaid caregivers in their own homes, family homes, and in shared living arrangements. In some cases, persons with disabilities and caregivers may require isolation or quarantine. In the event that persons in group living facilities become infected, government planners must address how to provide care for those persons without endangering others in the facility. Government planners must provide instructions for dealing with these complicated situations, explicitly addressing the rights and needs of persons with disabilities. Placement of caregivers and service providers in quarantine or isolation must not leave persons with disabilities without services and supports to maintain their health, safety, dignity, and independence.

All physical accessibility, program accessibility, and effective communication accessibility requirements must be met throughout placement in quarantine and isolation.

 

Access to Protective Equipment, Bulk Distribution of Food, Medication, and Health Maintenance Supplies

In some communities, the distribution of protective equipment, food, and medical supplies may be warranted. If Point of Distribution locations are established, government planners must address how these supplies and equipment will be distributed to persons whose ability to drive, lift, carry or whose use of public transportation is limited.

 

Legal Obligations and Training

Public and private agencies that provide services to persons with disabilities must be aware of their legal obligations and must train their employees appropriately. When public and private agencies and businesses are unclear about their legal responsibilities, there are no limitations in providing greater than minimum levels of support and services to persons with disabilities. Lack of understanding is NEVER an acceptable reason for failing to meet legal obligations, including throughout emergency circumstances. 

 

Government entities

Government entities have a legal obligation to provide equal access to public health emergency services to people with disabilities, including throughout a pandemic, if declared, under the Rehabilitation Act of 1973, 29 U.S.C. § 701 et seq. and the Americans with Disabilities Act of 1990, 42 U.S.C. § 12101 et seq. Equal access includes ensuring continuity of operations for disability services before, during, and after public health emergencies.

 

Private entities

Private entities have obligations under the Rehabilitation Act when they receive or disseminate federal funds. They also may have obligations independent of federal funds under the Americans with Disabilities Act and other laws.

 

Right to Live in the Community

People with disabilities have the right to receive services in the most integrated setting appropriate to their needs. Disruption of operations can result in institutionalization which, in addition to violating rights, can lead to negative health outcomes, including death. Equal access to placement in quarantine and isolation must also be provided in the same settings as other persons without disabilities.

The existing legal protections of persons with disabilities remain in effect under all circumstances. These protections are not subject to waivers or exceptions, even during public health emergencies or declared pandemics.

Consultation with Disability Community Leaders Who Are Subject Matter Experts

Government planners must follow the following principles in developing their approach to persons with disabilities:

1. They must consult with leaders from the disability community in their planning.
2. They must consult with experts with real-life experience in dealing with mental health, aging, sensory and communication disabilities, chemical and environmental sensitivities, autism, intellectual, developmental and cognitive disabilities, and chronic health conditions.
3. They must avoid disrupting the lives of persons with disabilities based on prejudice or unwarranted assumption. Like everyone, persons with disabilities need to be informed of why public agencies believe that certain actions are warranted, to be given an opportunity to ask questions and receive answers in an accessible format, and to be afforded the opportunity to object and propose alternative solutions.

 

In closing, immediate and sustained action is imperative to meet the urgent and ongoing needs of every affected and potentially affected community. Please share this Call to Action widely. A press release will also be issued. Further information and an opportunity to add your organizational support will follow.

In Solidarity,

Marcie Roth, Executive Director and Chief Executive Officer

World Institute on Disability

301-717-7447

marcie@wid.org

www.wid.org

Germán Parodi and Shaylin Sluzalis, Co-Executive Directors

The Partnership for Inclusive Disaster Strategies 

215-971-0660 and 570-777-0268

dart@disasterstrategies.org

www.disasterstrategies.org 

Todd Holloway, Chair

National Council on Independent Living Emergency Preparedness Subcommittee

253-830-4279

toddh@cfisouth.org

www.ncil.org

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by Kat Zigmont, Director of Operations

I was very fortunate to be able to attend the 2020 International Consumer Electronics Show (CES). I went as part of the Consumer Technology Association (CTA) Foundation Accessibility Group gathered to evaluate which products are accessible and relevant to people with disabilities.

While attending various events and wandering the halls, I found a great deal of accessibility upgrades. Some of the welcoming accommodations were early access to keynotes and ADA seating up front, multiple teams of ASL interpreters, captions provided at large plenaries and in small workshops, multiple sighted guides assisting attendees, and an accessibility desk to troubleshoot any other needs attendees with disabilities might have.

Here is my accessibility analysis about the various products I encountered during my time at CES 2020:

Hearables

Phonak Virto Black

Visiting the Phonak desk, I was approached by a rep with a new “hearable” that the  company had just put on the market. This in-the-ear hearing aid looks like typical “off the shelf” ear buds, but is made after taking an earmold impression and is adjusted to the wearer’s specific hearing needs. This is the same process used for a typical hearing aid. While talking to the audiologist, I received clarification that their new product was a proper hearing aid. It is clear that Phonak is trying to fight the stigma of hearing aids the same way other hearable products are, i.e., by making them look like earbuds.

My lovely accessibility colleagues from the Hearing Loss Association of America (HLAA) informed me that in-the-ear (ITE) hearing aids are not new, and were all the rage a few decades ago, but are being reintroduced. The most important difference between hearables and these in-the-ear hearing aids is the cost, with the base price for the latter being around $3,000 for a pair.

Acouva Amp

Acouva hearable devices amplify sound and get sounds closer to the eardrum with its elongated in-ear piece. These earbuds pair with an app that analyzes your hearing, allows for and suggests sound customization based on your results. There were two tiers of amplification earbuds, with the first applicable to mild hearing loss and the second tier to mild to moderate hearing loss. With the price ranging between $185–$300 per set, these hearables are very affordable.

LIZN Hearpiece

LIZN Hearables are a fantastic option for sound amplification. These completely round hearables are able to reduce background noise while boosting the wearer’s own voice in addition to amplifying other sounds. They also provide directional amplification allowing for better one-on-one communication. The unique shape allows for comfort for a longer period of time than the typical earbud shape. With the price being $149, this is a very competitive product for people with mild to moderate hearing loss.

Able Aid

Able Aid was a hearable from Japan that has audio canceling for background noise, voice canceling to reduce feedback from your own voice, and customizable amplification features when paired with a smartphone. This product promises to enhance sound from a focused direction in order to improve one-on-one communication in less than ideal environments. The device itself was much larger than earbuds and cords behind the head connecting the two earpieces. With a cost of $399 for a headset and the current size of the unit, I think this product is less attractive then others shown this year at CES.

Wearables

Palmcat Gesture Recognition Device

Palmcat’s wearable gesture recognition technology allows the wearer to control a typical computer mouse or to operate a flying drone. This product is a wristwatch-sized device and requires no additional software, although there is supporting software that will allow for more customization. While this technology is designed for gamers, I see a great application for people with disabilities affecting their dexterity. With this wristband around the base of one’s hand, they can control the mouse without having to grip. When they need to select an item, there are left or right gestures that replace mouse clicking or double clicking. With a sleek and simple design and ease of connecting to various devices, this product has great potential.

RETISSA Laser Display Glasses

QD Laser’s RETISSA® Display is a “laser retinal scanning type eyewear” created for individuals with low-vision caused by irregular astigmatism, particularly when traditional glasses and/or contact lenses are not an option. The way the gentleman at the booth described it, there is a laser behind one of the lenses, pointing towards the lens that reflects and projects an image of the environment onto the retina. This sounds very cool and the idea is original. However, currently the size of the laser box attached to the wearer’s glasses is large, it is also paired with a large rectangular box that is bigger than a typical pocket, and needs to be corded to the glasses. For these reasons, this product is currently too cumbersome to be attractive to users.

Pethi Smart Dog Collar

Pethi is a smart dog collar. While there are many smart collars on the market that tell you the dog’s GPS location and how much activity the dog is getting; there are fewer that have a full heath monitor. Health sensors monitor heart rate, temperature, breathing rate, calories burned, and heart rate variability (HRV), caused by pain or stress, for example. For those of us with service dogs, we worry if our dog is getting stressed out under certain circumstances. I really liked the direction this company was going in and their collars were beautiful looking as well, with no indication they had a chip embedded. It’s not yet sold in the U.S., which is a bummer.

Ovis Hands-Free Smart Luggage

Ovis from Forward X is hands-free, self-driving smart luggage that comes with a tracking bracelet that vibrates and lights up if you get more than 2 meters away from the suitcase. GPS is built-in to track your luggage if it gets lost. I walked around the showroom floor trying to trick the luggage, hoping it would lose me, but it did not. I thought this product would be great for people with mobility or dexterity disabilities.

Mobility

WHILL Self-Driving Wheelchair

Panasonic has partnered with WHILL to create self-driving power wheelchairs. Using an associated app, you can set a destination on your smartphone and the wheelchair will navigate there on its own. With the addition of sensors in the front and back as well as a remote control, the WHILL chair can detect and auto-stop when faced with obstacles. Additionally, you can set a leader chair that can lead up to 10 follower chairs to their destination. I can see many applications for this self-driving option for people with a variety of disabilities. At the booth, the reps talked about an airport application to be used to assist people to move between gates. It was unclear if Panasonic would be able to sell the sensor additions to be used on other (non-WHILL) power wheelchairs, but if it is possible, I think there are far wider applications.

Gyeonggi Self-Driving Vehicle

Gyeonggi Autonomous Driving Vehicle is meant for indoor use primarily, such as airports and convention centers. This vehicle has speech output as part of its typical programming, but does not have voice activated input. Once a destination is programmed in, the vehicle will take you there with no further actions needed. I can see these vehicles used as an alternative for airport meet-and-assist services for some people with disabilities, as well as for large conferences and convenings.

Access Explorer Wayfinding App

Access Explorer is a beacon-based wayfinding app for indoor spaces such as malls, hospitals and airports. Using a smartphone with Bluetooth, the Access Explorer app communicates with the positioned beacons to identify your current location and direct you to the point of interest you specified. This product offers a great way for people with visual, intellectual or way-finding disabilities to navigate tricky indoor environments where GPS does not work. However, the infrastructure required, including the instillation of beacons, seems to be a barrier to widespread implementation.

C-FREX Exoskeleton

C-Frex is an exoskeleton system for people with spinal cord injuries and paralysis. Made from carbon fiber reinforced plastic, this walking orthosis is meant to help to maintain physical function. The “knee flexion without power-realization of extension motion” is the key component to making this system work. This was an interesting booth to come across and I can see many physical therapy and exercise applications for this product.

Smart Home

Lockly Smart Lock and Video Doorbell

Lockly is a smart lock and video doorbell. This lock uses a peek-proof keypad by having multiple numbers listed for each code that you set. When you use the touchscreen, you select your numeric series enclosed in the cluster of numbers. These smart locks can also be opened with just a fingerprint as well as be controlled by your smartphone or Alexa, for remote or alternative unlocking. I can see people with many disabilities appreciating this alternative lock, particularly people with disabilities that affect dexterity.

Bosch Smart Refrigerator

At the Bosch smart home exhibit, there was a smart refrigerator with food recognition capabilities. Several cameras are built into the fridge that will monitor what you typically buy and use. The accompanying app will also help you keep a grocery list as things are used and recommend recipes based on what is left in your fridge. Because the app that manages these features is Alexa compatible, it is accessible. Asking for more details about the accessibility features, I was told that Alexa would read the grocery list to you and you can ask Alexa to adjust your list any way you like. This could be a fun tool for tech savvy blind cooks!

Caregiver Smart Solutions

The “Let Them Age in Place” Caregiver Smart Solutions is a set of smart plugs and motion detection devices that let you monitor the activity of whoever’s home the product is set-up in. While talking to folks at the booth, they explained that once the devices are set up, they report activity to an app that will then analyze the data and report out if the occupant is eating, sleeping, drinking coffee vs. tea, moving around, and bathroom frequency. I must admit I was a bit dubious about this product. When I questioned the reps how the app would know the occupants’ bathroom patterns or what they had to drink based on these sensors, I was told that those were trade secrets not to be disclosed. Upon further prying, I was told that the smart plugs would tell the app if the coffee machine or electric kettle were on that day. I do understand this, but just because coffee was made does not mean it was consumed. Just because someone went into the bathroom, as the sensor might allege, does not mean they used the toilet. The booth staff was resistant to my questions and offered no further clarification. I do worry that this type of system might provide misinformation based on the concerns I expressed. While technology might make living alone possible for people who might otherwise be institutionalized, the implications for the privacy of people with disabilities are also deeply concerning.

Robots

LeaVoice AI Therapist

LeaVoice is an AI therapist for people with ADHD, anxiety, and depression. As the developer’s website states, “LeaVoice is based on a counselling technique called Motivational Interviewing that helps you find the motivation to reflect on your life, change it and celebrate all that makes you – you.” A holographic friend is paired with the LeaVoice app that enables you to record messages about your troubles, fears, and/or stressors. You will then receive customized messages back from your AI friend with positive messages of support. There is also the option to share messages with other LeaVoice users as well.  I think this is an innovative idea to provide support on a 24/7 basis. I was not able to use the app on the show floor, so I cannot evaluate the effectiveness of the content. However, I can see applications for this type of AI for people with mental health and emotional support-related disabilities.

Qooboo Robot Pet

Qoobo is a cushion-shaped robot with a wagging tail. This was a fun and silly robot product made to manage stress. The tail wags when you pet the pillow and sometimes on its own. This product is meant to mimic calming pet behaviors and could be used as a therapy or emotional support animal alternative in a pinch.

PiBo Robot Personal Assistant

PiBo is a friendly little robot out of the Samsung C-Lab that I found on the floor. It can be used like most smart home devices, i.e., for functioning as an alarm, for playing music, for listening to news and weather reports, and for scheduling. PiBo has voice and face recognition and the ability to code your own features into its programming. The lovely folks at the booth talked to me about the possibility of this robot being used by kids with developmental, intellectual or cognitive disabilities. Since PiBo responds to voice commands and can identify moods via its face recognition programming, it could be helpful for children with emotional functioning issues  to identify their own emotions and then offer them robotic supports. Additionally, this little robot can be used to help individuals with disabilities by providing reminders throughout the day and coaching them on communication skills.

Align VR Soft Skills Training & Assessment

Align VR is an HR tool that helps assess and train individuals on soft skills; it also assists with workplace team building behaviors.

This Virtual Reality experience could be an exceptional tool for people with autism with regard to developing workplace soft skills and interpersonal skills in a private environment.

Lovo Voice Conversion

LOVO is a voice conversion platform that creates an electronic voice from five minutes of a recorded speaker reading the system’s script. The electronic voice sounds very much like a typical human voice, closely mimicking the recorded voice. This would include any recorded accent or tone range of the voice.

While this product is targeted towards voiceovers for animations or other videos, games, and audiobooks, I see application for people with disabilities. For example, people who use Augmentative and Alternative Communication (AAC) devices, have little opportunity to have a custom computer voice of their choosing. I spoke with the creator of this platform at the booth about this and he was very open to exploring if his system would be compatible with AAC devices and apps. This would be a nice feature enabling AAC users to choose a voice that reflects how they want to sound to others.

AARP Pitch Competition Inventions

This event included presentations from eight startups that pitched their products and answered questions from on-stage experts before the audience used their cell phones to vote on a scale of 1–10 on whether the products “keep seniors in the game.” This was a fun Shark Tank-esque event that featured a wide range of products.

CareWare LED Light Therapy

CareWare is a wearable, wireless, LED light-therapy patch typically used for athletes. This product treats pain and improves blood circulation and tissue recovery from injuries such as a fall. Within 30 minutes a wearer can see the effect on the reduction of a bruise. This drug-free alternative to acute injury has been used by professional athletes for decades.  This is a really cool product for which I can see many applications.

Naolu Brain Tech (BrainUp)

Naolu Brain Tech BrainUp is a brain-computer interface product that is like a gym but for the brain. This product has practical applications, such as a deep sleep aid, brain/mental state examination, and brain training programs. Paired with an app, you can receive a real-time brain analysis converted into useful brain information that is easy to understand. Recognizing that brain health is important, but it was unclear what results you could expect from this product aside from better sleep.

Rothem Smart Bike Backlight

Rothem is a smart bicycle backlight that predicts collisions between a bicycle and vehicle. This backlight fits bikes with an HD camera, buzzer, radar, speakers and a mic, and several bright LEDs. While the light makes the cyclist more visible to drivers, the radar tracks how close cars are getting and relays that to the rider via a display on their smartphone screen. When a car is too close, a loud buzzer sounds to alert the car. While I don’t believe this is “keeping seniors in the game,” I can see the value to the general public and as an application for wheelchair users, if the smart bicycle backlight can be affixed to a wheelchair.

Smarty Pans Smart Cookware

Smarty Pans is a sensor-enabled cookware that automatically computes nutrition information of home cooked meals and allows users to create recipes while they cook, which are formatted by AI. The Smarty Pan pairs with an app that will store all your recipes and allow you to share them with others. This product is a great health and wellness tool that gets you cooking.

Strig Massage Tool

Strig is an advanced massage tool with micro-current and micro-vibration to relieve muscle pain and recover faster. This product seemed like a good drug-free alternative for pain relief. It was recommended to use Strig for 3–5-minute intervals, take a break, and then repeat the process three times. This light and portable device seemed to have good application for chronic muscle pain.

D Free Bladder Monitor

Triple W DFree is a wearable device that predicts when the user needs to go to the bathroom. Its sensor uses ultrasound to monitor the bladder, sending notification to your smartphone when your bladder is almost full, resulting in less accidents. Now this product ”keeps seniors in the game” and can have many other applications for other populations.

Yoganotch AI Yoga Coach with Notch Sensors

Yoganotch is an Al yoga coach built on the Notch technology platform. People wear Notch sensors and practice yoga with real-time personalized technique feedback. The AI coach corrects your stance and recommends positions. This is a great option for those who could benefit from yoga, but would prefer not to attend classes. There are multiple video classes you can watch that also give you the ability to develop a sequence of yoga positions on your own.

Zibrio SmartScale

Zibrio is a SmartScale that uses a highly sensitive algorithm to measure your postural stability and fall risk in a 60-second standing test while you keep your eyes open. Zibrio pairs with an app and you can obtain a balance profile over time, as well as an explanation of your score on a scale of 1–10. Improving  balance can affect many other aspects of health. This was the product that won AARP’s innovation award for “keeping seniors in the game!”

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Now in Week 6 of WID’s strategic planning and alignment process, our Staff and Board have done some amazing work that we cannot wait to share with you! For now, here’s a look at our process.

With our new CEO, Marcie Roth and Board Chair, Kevin Foster at the helm, the WID team has taken a deep dive into mapping WID’s future. We started by taking a look all the way back to the earliest days of WID’s history. We want to be true to our past, embracing our incredible history and ensuring that it informs the way ahead, as we redouble our focus on the rights and needs of over one billion people with disabilities across the globe.

WID has led and participated in significant victories in the disability rights and independent living movements since our founding in 1983. These wins are attributed to a wide range of influences – among them, strong leadership and mentorship among people with disabilities, legislative, policy and legal wins, vast advancements in technology, the evolution of disability-led services and organizations, universities establishing disability policy, history and research programs, calls for accountability regarding privilege and intersectional oppression within the disability community, and the writings, influence, and leadership of the next generation of disability rights activists. WID is committed to redefining its strategic direction, informed by progress, but not distracted from the realities that real change has not yet touched many people with disabilities. It is not enough to talk about change, WID’s future work will be driven by action; creating, measuring, and continually improving operational pathways to achieve and maintain true global disability access, integration, equality, independence, and inclusion.

Through the strategic planning process, the entire WID team is collaborating in defining our priorities, objectives, and metrics. WID Board and Staff met in December to start the strategic planning process by discussing our organizational history,  strengths, weaknesses, needs, and opportunities. In January, the Strategic Planning team, with representatives from Board and Staff, identified 4 domains for defining WID’s work, then split into 4 corresponding working groups. The working groups established objectives, measuring potential, scoring progress using tools designed by our Board Chair, and continually updating our timeline and work plan as we establish and meet our milestones.

As we roll out our strategy in the coming months, and move from words into action, WID will continue our commitment to social and economic integration, equality, independence, and inclusion for over 1 billion people with disabilities worldwide. We are reminded that WID was established as one of the world’s first disability-led policy thinktanks, and we carry a long legacy of cutting-edge initiatives that have focused on personal assistance services, employment, benefits, leadership development, and accessibility. WID will continue to positively impact the rights, lives, and opportunities of people with disabilities alongside our allies and stakeholders through our national and global leadership, strategic initiatives, programs, and services; continually moving research and policy into action and operationalizing disability inclusion as an intersectional imperative for global social justice.

 

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Berkeley, CA. (January 23, 2020) – As the World Institute on Disability (WID) enters the next decade with an exciting transition underway, the organization has a renewed sense of purpose and pride in its exceptional history. Among the many changes underway, WID has established three honorary positions on our Board of Directors in recognition of the visionary leadership and transformational roles of WID’s founders at the dawn of the global disability rights movement.
Lifetime Board Emeriti appointments have been made today for founders Judy Heumann, Joan Leon, and Zona Roberts, mother of Ed Roberts, and a key leader in her own right.

In announcing the appointments, Kevin Foster, President of the WID Board of Directors remarked, “On the 10th anniversary of Ed Roberts Day, and what would have been Ed’s 81st birthday, we are thrilled to be honoring three exceptional leaders who have continued to drive the global disability rights movement forward ever since WID’s inception in 1983.”
Ed Roberts Day was established by the US House of Representatives in 2010 to acknowledge Ed’s contributions in “helping to reduce barriers, increase access and improve lives of persons with disabilities”
For more on Ed Roberts Day: http://bit.ly/37g3KVJ
WID Executive Director and CEO Marcie Roth added “Judy Heumann, Joan Leon, and Zona Roberts are treasured for their visionary leadership and transformative contributions. We are thrilled to welcome them back to WID leadership roles, and anticipate that their insights will be of huge value to the organization, our movement and the lives of over one billion people with disabilities worldwide as we connect WID’s past to our unfolding future.”
Below are short bios for each of the new Board Emeriti:

Judy Heumann

Judy Heumann co-founded WID with Ed Roberts and Joan Leon in 1983, serving as co-director until 1993. Appointed by President Clinton, Judy served as Assistant Secretary for the Office of Special Education and Rehabilitative Services in the U.S. Department of Education until 2001. From 2002-2006, she was the World Bank Advisor on Disability and Development, leading the World Bank’s work on disability. She worked to integrate disability into the bank’s dialogues with client countries, its country-based analytical work, and its efforts to improve policies, programs, and projects that took people with disabilities fully into consideration in developing countries. The Director of the Department of Disability Services for the District of Columbia from 2007-2010, she was appointed by President Obama as Special Advisor on Disability Rights for the U.S. State Department, responsible for leading the Obama Administration’s efforts to develop a comprehensive strategy to promote the rights of persons with disabilities internationally; coordinating an inter-agency process for the ratification of the Convention on the Rights of Persons with Disabilities; ensuring that foreign assistance incorporates persons with disabilities; leading disability human rights issues; ensuring that the needs of persons with disabilities are addressed in international situations; and conducting public diplomacy, including with civil society, on disability issues. After leaving that role in 2017, she spent two years as a Senior Fellow at the Ford Foundation.

Before WID, Heumann was Special Assistant to the California State Director of the Department of Rehabilitation. From 1975-1981, she served as Deputy Director of the Center for Independent Living in Berkeley, California, the first Independent Living Center in the United States.

Joan Leon

Joan Leon co-founded WID with Judy Heumann and Ed Roberts in 1983. Her primary goal was to establish a research center that would be able to support the disability rights movement with data. As Co-Director from 1983-94, she had the primary responsibility for developing a strong and reliable base of support for WID’s programs from government, corporations, and donors. In 1994, she became Executive Vice President in charge of programs as well as fundraising. A year later, she became CEO. In 1997, she assumed the role of President and guided the transition of WID to new leadership.

After the death of Ed Roberts in 1995, she was part of a group of community leaders who worked to develop a suitable memorial to Roberts’s work and life. This effort resulted in a plan for the Ed Roberts Campus, a nonprofit corporation formed by 7 major disability organizations that shared a common history in the Independent Living Movement in California. First open in November 2010, Ed Roberts Campus now houses those 7 organizations and a handful more at one site in Berkeley, CA, sharing resources and expertise and to improve services to people with disabilities.

Zona Roberts

Zona Roberts, while most known for being the supportive mother of Ed Roberts, who would become known as the “father” of the disability rights movement, is a formidable advocate for disability healthcare, education, and assistive technology in her own right. Zona fiercely advocated for Ed’s right to return to high school using a phone to participate in classes from home, and to graduate without fulfilling physical education requirements. She was also instrumental in Ed’s battle with UC Berkeley to accommodate his iron lung in student housing. Zona began attending Berkeley herself at age 49 for a teaching certificate, graduating with her B.A. in 1969 and earning her certificate the following year. Zona worked for the Physically Disabled Students Program (PDSP) coordinating Personal Care Attendants for students, and was even offered the role of Director of the organization, but turned it down, feeling that the program should be led by a disabled person.

She went on to earn her Master’s degree before going to work for the Center for Independent Living, establishing the organization’s counseling department. When she left the CIL in 1982, she opened her own counseling practice, working with caretakers and family members of people with disabilities. Zona’s embodied passion for independent living has been instrumental in securing rights and resources for people with disabilities around the world.

Full press release PDF: link to download

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Based in Berkeley, California, the World Institute on Disability (WID) is a nonprofit that works to fully integrate people with disabilities into their communities via research, policy, and consulting efforts

For more information on this story, contact Heather Duncan, heather@wid.org.

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Applications are now open for our 2020 Conference Access Initiative with JP Morgan Chase! This scholarship is for people with disabilities who are at least 18 years old and live in the United States of America. Diverse applicants encouraged to apply.

We are currently accepting applications for our Disability Ambassador Scholarship at the following Spring 2020 conferences:

Financial Health Network – EMERGE: May 5-7, 2020 in Atlanta, GA
NeighborWorks Training Institute: May 18-22, 2020 in Los Angeles

Link to the application:

https://www.surveygizmo.com/s3/5408413/Scholarship-Application-2020

Disability Ambassador scholarships include:

• Paid event registration
• Paid hotel
• Paid travel to and from the event
• Disability accommodations and support

Note: Disability Ambassadors’ perks do not include food (per diem) or daily travel during the event.

To learn more about our Conference Access Initiative with JP Morgan Chase, visit our Conference Access 2019 page, or our Conference Accessibility main page.

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by Altaira Hatton

Hi! My name is Altaira Hatton, and I work as a mediator in beautiful Santa Cruz, CA. I also founded a nonprofit homeless services organization last spring, Neighbors with Lunch, and we have served over 1,000 meals since February!

I delighted in Upswell Chicago. The themes, workshops, speeches, and attendees served to educate, motivate, and inspire me. I left with new friends, potential funders, and lots of ideas.
The support provided by JP Morgan Chase and the World Institute on Disability
was invaluable. Without them, I simply could not have attended this conference. My nonprofit is small; we do not have a budget for travel funds and conference registration. And because I recently retired my wonderful service dog of nine years, I now need to travel with a human assistant. These added costs and logistics would simply have proved prohibitive, and I am deeply grateful for the help and support provided by this initiative.

As Upswell highlighted so clearly this year, diversity must be visible to create change. By sending real, live, personally engaged, and actively participating individuals with disabilities to this and other conferences, you bring our experiences and our narratives into focus. We have a seat at the table. We’re seen. We’re heard.

It may seem like a small act, but for every hiring manager I met, for every foundation director I talked with, they now have one more person they’ve met in their field with a disability. It’s something small, but like so many exercises of socialization, it’s accumulative.

I think the Conference Accessibility Initiative is rather brilliant. By giving a minority who often experiences constrained resources an opportunity to attend conferences, you serve to boost their professional reach, and to place them at the table with policy makers and leaders. Good policy derives from a thorough understanding of the needs of everyone affected, and far too often people with disabilities, despite comprising one in 4 U.S. adults (61 million Americans), are overlooked and underrepresented. This program is providing an excellent service to the community, and I look forward to supporting JPMorgan Chase and WID in their future collaborations.

 

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Would you like to be a Disability Ambassador with WID and JP Morgan & Chase? Applications for 2020 are now available!

To read more about our Disability Ambassadors’ experiences at the Independent Sector Upswell 2019 Conference, follow the link below:

Jennifer Wolff’s Upswell Blog

For more Disability Ambassador blogs, check out our Conference Accessibility Initiative 2019 page.

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by Jennifer Wolff

The World Institute on Disability’s (WID) Disability Ambassador program provided the opportunity to attend the Upswell Conference in Chicago. My name is Jenn Wolff and I’m an activist from Iowa currently working creating a storytelling community to impact changes to Medicaid for individuals with disabilities and the direct care workers who help us live in the community.

In the advocacy work I’ve experienced both in Washington DC and in Iowa, our elected officials are bombarded by data, by budgets and by lobbyists, but need to be reminded of how constituents are impacted by the policies they are making decisions on.  This is even more important for the disability community. When we speak up about our lives, about our values and all that we can do in an accessible environment with access to the right equipment, we are educating individuals on the positives we bring to this world.  We are an investment, not just a number.

Upswell provided a fabulous opportunity to meet authors, musicians, entrepreneurs, inventors, storytellers, and change-makers who all just want to make the world a better place.  I brought back tools to make the #UpgradeMedicaid campaign more effective in how we tell our stories from StoryCorp, learned about creating community-based policy solutions for legislators from Gabriella Barbosa, and about research-based strategies to bridge differences from the Greater Good Science Center.

Not only has this experience increased my knowledge base and given me more tools to affect change, but it also gave me more impetus to continue the work I’m doing. My community matters and too many people feel isolated in the fight for the basic human rights of access to health care, access to community living, and to be treated like anyone else rather than “less”. All the people I had the honor of meeting empowered me to continue the work as they are working to improve our world as well.

The best part about the Conference Accessibility Initiative by JP Morgan Chase and WID, is that provided a truly accessible space for individuals like myself, to be present in this important space, discussing social change. Many conferences and workshops are not as well-planned for accessibility (i.e. no ASL or CART, stairs with no ramp or lift, additional barriers), which can make individuals feel unwelcome. Upswell was amazing in its accessibility and in its positive messaging throughout the conference. Thank you for this opportunity!

 

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Would you like to be a Disability Ambassador with WID and JP Morgan & Chase? Applications for 2020 are now available!

To read more about our Disability Ambassadors’ experiences at the Independent Sector Upswell 2019 Conference, follow the link below:

Altaira Hatton’s Upswell Blog

For more Disability Ambassador blogs, check out our Conference Accessibility Initiative 2019 page.

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