Pacific Gas & Electric’s recent power shut-off in Northern California vividly demonstrated the high risk to countless people who rely on life-sustaining equipment and live with chronic conditions. The rushed and unwise implementation of the power shut-off’s jeopardized those with disabilities who rely on power for mobility devices like wheelchairs and scooters, for elevator access to their homes and workplaces, and for critical home health equipment, such as continuous positive airway pressure (CPAP) devices for sleep apnea, ventilators and oxygen delivery breathing machines.
With the success of the independent living movement and technology innovations to provide for complex health needs in the home, very large numbers of people with disabilities are at risk. For example, according to the 2017 Annual Disability Statistic Compendium, published by the National Institute on Disability, Independent Living and Rehabilitation Research, California has 4,203,618 civilians with disabilities living in the community; 2,217,792 of them have ambulatory disabilities.
To date, the utilities and the California Public Utilities Commission have focused on making sure people included in the medical baseline program receive a warning notice before a power shut-off. Even so, a Commission decision acknowledges in some circumstances advance warning may be impossible during fast-moving weather situations. In addition to that limitation, the medical baseline program does not include most of the potentially affected individuals.
Most importantly, a warning alone will do little. Most who rely on power for their mobility or health equipment needs don’t have an alternative source of power, don’t have information about what their options are for energy self-sufficiency, and may lack funds to pay for such options. Many people who live with disability are low income. Thus, it is extremely urgent for a comprehensive approach to the critical needs of this diverse community.
California must rapidly adopt a broad program to provide green (resilient, renewable and clean) power storage and generation equipment, as well as the support needed to effectively use it, to people who rely on power for survival for health and disability needs through long-term low-interest loans or for free. Public funds must be made available to operate a program; all people have the risk of relying on power for their mobility and health during their lifetimes. This should be a shared investment for a power resilient future. With public funding, it is necessary for there to be public oversight to ensure the funds are well-managed and the goals of the program are met. Development of the program must occur more quickly than government process usually allows, since the risk is high. Existing programs and resources should be leveraged.
The motto of the disability movement is “Nothing about us without us”, and for good reason. Disabled people know best how to define and meet the complex needs of their peers. The program must be governed by people representing various groups of people with disabilities and others with access and functional needs stakeholders. Existing disability service organizations should play a role in program operation, perhaps as a network of on-the-ground entities, or in other ways in order to bring the most sophisticated and experienced practices.
A comprehensive program must include outreach and communication; research into assistive technologies, adaptations to generic equipment to increase accessibility, and power storage and generation; equipment loan/distribution and set-up; consumer training and technical support; purchasing equipment, negotiating cost savings and finding solutions for people in multi-unit buildings. The program should be operated transparently, have strong financial controls, consumer-oriented quality assurance measures, and give priority to low income people.
Because of the recent power shut-off, many Californians are thinking about how to quickly bring about a future with energy resilience and self-sufficiency. Californians with disabilities must be at the forefront of this re-visioning effort. We must not repeat the situation we now find for ourselves, regretting the fact that we allowed people with disabilities to be an afterthought.
Deborah Kaplan is the founder of EnterpriseAccessibility.tech. She is an attorney specializing in disability and public policy and the former Executive Director of the World Institute on Disability. She is a member of a consortium of disability advocates and organizations that support these goals.
Rachelle Chong is a former Commissioner of the Federal Communications Commission and the California Public Utilities Commission. She is a regulatory lawyer and advocate on issues relating to telecommunications, Internet, energy and transportation policy.