Empowering People Through Advocacy

December 2021
A publication from our Disability Rights and Advocacy Specialist,
Patrick Ober, J.D., Ph.D.
Hello again, CILO supporters and Disability Advocates! Below is our current highlight of advocacy and policy issues to know and learn about related to people with disabilities and independent living.

Well, everyone, another year is coming to a close! 2021 was yet another year full of COVID and non-COVID challenges and changes to daily life. However, advocacy and CILO’s efforts to provide services and supports to Ohioans with disabilities continued all year long. For this final newsletter of the year, we wanted to share with you all a recap of the advocacy work CILO did with and on behalf of people with disabilities. Many of these efforts will continue in 2022. If you or anyone you know is interested in participating in these advocacy issues, please contact Patrick Ober, Disability Rights and Advocacy Specialist, by email, or phone 513-241-8046.

CILO Advocacy Efforts in 2021 – A Recap
The Ohio In-Home Direct Care Provider Crisis
CILO has been an active advocate in the direct care crisis issues faced by thousands of Ohioans with disabilities, and millions of people across the country. On October 28, 2021, the Ohio Olmstead Task Force in partnership with CILO hosted one of 5 virtual forums on the direct care workforce crisis across the state. People with disabilities currently enduring this shortage of direct care workers spoke directly with Ohio legislators, county officials, and members of the public about the issues with Ohio’s direct care system, educating them on what exactly is wrong and offered recommendations for how we can address it.

We were honored to have Ohio State Representatives Brigid Kelly, Cindy Abrams, Catherine Ingram, and Hamilton County Commissioner Denise Driehaus participate in the Cincinnati forum. A special thanks also goes out to panelists Suzanne Hopkins, Jamie Moon, and Susan Koller for sharing their stories. A link to the Cincinnati forum is available here, and links to the other forums are also available on the OOTF website.

Health Care Advocacy and Access for People with Disabilities
CILO has also made efforts to work on projects and advocacy efforts aimed at increasing equal access and non-discrimination of people with disabilities when receiving health care services. Early in 2021 CILO was awarded a grant from the Ohio Statewide Independent Living Council to develop a healthcare advocacy training program for individuals with disabilities. This program will help Ohioans with disabilities learn about their rights and develop self-advocacy skills when receiving health care and home and community-based services. CILO was also lucky enough to have recent University of Cincinnati graduate Samuel Schell-Olsen serve as a project assistant and help develop these trainings!

Financial Planning for People with Disabilities
During the spring of 2021, CILO staff collaborated with financial advisors from a nationally reputable financial planning firm, Synergy Wealth Solutions, to provide a 4-part virtual webinar series on financial planning basics for individuals with disabilities. In total, over 20 individuals attended the webinars, learning valuable information about budgeting, checking and savings accounts, ABLE and STABLE accounts, disability trusts, and other financial options. These webinars were recorded and made available to individuals at later dates as well, allowing even more consumers and families to learn from the presentations. 
Accessible Transportation Options
During the summer and fall of 2021, CILO staff were invited to participate in a southwest Ohio regional paratransit group organized by local and regional transit providers and included stakeholders from social service and disability-centered organizations. The goal of the group was to identify ways in which southwest Ohio transit providers could collaborate to reduce barriers people with disabilities face in scheduling and using paratransit across the region. CILO provided critical input as a disability-focused organization that understood the transit barriers and issues faced by of people with disabilities. As a result of this group’s work, a number of action steps and initiatives were identified and submitted to Ohio officials with the intention to implement many of these initiatives and action steps during 2022 to directly address barriers to efficient and accessible paratransit.

Community Outreach on Independent Living
Throughout 2021, CILO staff conducted presentations to individuals with disabilities and their families, as well as university students studying disability-related disciplines, about transition planning and options for assisting people with disabilities in obtaining personal care and direct support services, job and career development opportunities, and how to effectively plan for adulthood for individuals with disabilities to promote independence, self-empowerment, and self-advocacy. Nine presentations were given to approximately 100 university students throughout the year on independent living, empowering people with disabilities, and the importance of direct care support for those with significant disabilities. Additional presentations were made to dozens of parents and family members of high school students with disabilities on transition and life planning, CILO services and supports, and other disability-focused services and supports available in the Cincinnati area.

News Media Stories About Disability Advocacy and Legal Issues
During 2021, CILO was contacted numerous times by news media reporters and staff to provide interviews and information on local news stories. In April, CILO’s Disability Rights and Advocacy Specialist was interviewed by local news channel 12 WKRC in Cincinnati as well as Spectrum News 1 in Kentucky about a young girl with Down syndrome who was denied entrance to the Newport Aquarium because she was unable to adhere to their policy requiring all individuals to wear a face mask while in the facility. The issue brought up concerns of rights under the ADA and how reasonable accommodations should be handled by businesses during the COVID-19 pandemic. The story was picked up nationally by Newsweek magazine.  
In May, CILO staff was interviewed by local news channel 9 WCPO in Cincinnati about the effect of road closures in Cincinnati’s Over-the-Rhine neighborhood on accessibility for individuals with disabilities. The closures were to provide outdoor, on-street and on-sidewalk seating for restaurants to safely social distance customers. These street closures occurred on streets with residential apartments where some of the tenants had mobility or physical disabilities. Channel 9 WCPO reporters were interested in learning about how these closures might affect pedestrians in wheelchair or other mobility devices’ ability to navigate sidewalks, as well as how it would affect their ability to have paratransit pick them up and drop them off in an accessible way at their residences.

Disability-Focused News to Follow

Emergency and Safety Planning for People with Disabilities
In one Indiana town, law enforcement is considering new methods to allow people with disabilities to notify police or emergency first responders that they have a sensory or communication issue. In Avon, Indiana, police and MES are making 4-inch decals available for people with cognitive disorders to place on their car and/or homes. The goal of the program, called AWARE, is to alert first responders they’re about to encounter someone who may struggle with the sights and sounds of an emergency situation. Emergency personnel also receive disability awareness training, but the hope is that people with disabilities can get and place these stickers on the window of their car or home so that in case of an emergency, first responders would know that the person they are trying to help may have difficulty with bright lights being shined in their face, not like being physically touched, or may not be able to quickly and clearly communicate that they have a disability.

As many news reports in recent years have unfortunately shown, police interactions with individuals with autism or have sensory and behavioral issues can be interpreted as noncompliance by first responders, which can lead to devastating and sometimes deadly situations. People with disabilities and their families are hoping that using these stickers will provide the opportunity to proactively advocate and communicate for themselves in emergency situations and potentially save lives.

Podcast Accessibility Lawsuit
Podcasts are an ever-popular way for many people to consume news, arts, entertainment, and culture, but for many people with hearing impairments, they are not very accessible. A couple advocacy groups want to change that and have filed a lawsuit against SiriusXM – which also owns brands Pandora and Sticher – claiming that those platforms violate the Americans with Disabilities Act and state laws. The lawsuit accuses the company of excluding people with hearing impairments by failing to provide captions or transcripts for any podcasts. The groups are hoping that they can force SiriusXM to offer podcast transcripts, as well as must "affirmatively" advertise the transcript option to people.

Public Transit Accessibility Funding
Finally, a bit of news about accessible public transit across the country: money included in the $1.2 trillion infrastructure bill signed into law by President Joe Biden last month aims to make public transportation more accessible to people with disabilities. The new federal infrastructure law provides nearly $107 billion for public transit agencies, including an “All Stations Accessibility Program” that will provide $1.75 billion in competitive grants over five years to state and local governments to upgrade older rail transit stations that remain inaccessible to people with disabilities. According to the Federal Transit Administration, approximately 28% of the country’s 3,447 rail transit stations are not accessible, and are particularly inaccessible in large, century-old transit systems in Boston, Chicago, New York, and Philadelphia. Many stations in these and other cities do not have elevators or ramps at stations, making it difficult to impossible for millions of people with disabilities to use those forms of transit to navigate their communities or enjoy a tourist visit to the city. With a dedicated funding source now available, many people are hoping that these transit stations will become ADA compliant and open convenient transit options for people with disabilities that have long been unavailable to them.

Thanks for reading and thank you to everyone who has been an advocate or helped someone advocate for themselves this year – Have a safe and happy holiday season, and we look forward to an exciting 2022!

Please reach out with any comments or questions.

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