What COVID-19 Is Teaching Us About the Future of Disability Rights
This year the disability community celebrated the 30th anniversary of the Americans With Disabilities Act, which was signed into law in July 1990 by President George H.W. Bush. Upon signing this historic piece of bipartisan legislation, he is quoted as saying, “Let the shameful walls of exclusion finally come tumbling down.” This is by far one of my favorite quotes on the successes disability rights activists and their allies have had in the fight for true inclusion in all aspects of community life.
Many of the dreams and goals of the ADA are at the heart of creating a system of care that is truly person-centered. While the ADA has made advancements in things like physical accessibility and community integration, two areas where we as a society continue to fall short are integrated employment for adults with developmental disabilities and access to high-quality healthcare that meets our needs in a person-centered way. Several studies show people with disabilities are a Medically Underserved Population. We often have higher costs and worse health outcomes than the general population. Being declared an MUP by the CDC or Congress could allow for more training of medical providers, higher rates of pay for doctors providing care to us, and more focus on prevention and the social determinants of health.
It is my hope that in the next 30 years, we strive to eliminate health disparities and barriers to employment in the push for a world of true inclusion for all people with disabilities. I dream of a world of no ableism, racism, negative attitudes and stigma. Given that we are in the thick of a massive coronavirus pandemic, it only intensifies the urgent need to make this happen at all levels of government. This pandemic is giving the non-disabled world an idea of what it’s like to be disabled.
The disability community is the world’s largest minority group and we have so much further to go in achieving equality and equity for all. We need to shift the disability benefits system and change attitudes among providers, family members and employers on the benefits of hiring people with disabilities. To support higher rates of employment for people with disabilities we need to eliminate work disincentives in the Social Security benefits system and expand access to supported employment for those without access to home and community-based services. Only after we have done these and many other things will we see a societal shift in attitudes about disability.
I hope this nightmarish pandemic will ignite an intense focus on addressing health disparities and attitudinal barriers faced by people with disabilities so we can be valued for who we are and be given equal access to care and support across all settings.
I believe it is especially important to use this downtime and crisis to dream of a new and better normal — one that is accessible, accommodating and respects the intersectionality of all social justice movements. As Audre Lorde once said, “There is no such thing as a single-issue struggle, because we do not live single-issue lives.” We are all impacted by all social justice movements. Climate justice, economic justice, migrant justice, civil rights, women’s, workers’ and disability rights are all interconnected with one another. In times like these, the disability community must join forces with non-disability groups and give space for people of color especially to step up and lead the way in achieving the dream of a fully inclusive diverse world where everyone is respected for who they are. A world where no one is discriminated against due to race, gender, disability and so forth in all aspects of society.
I hope the COVID-19 pandemic will provide a catalyst to create a world that is more inclusive and accessible for all people with disabilities. Some of the ways to make this happen could include:
1. Declaring people with I/DD a Medically Underserved Population and requiring that all healthcare providers receive training on disability awareness, ableism and racism. Doing so will help eliminate poor health outcomes and hopefully increase our life expectancy.
2. End the institutional bias in Medicaid by making access to home and community-based services an entitlement. Also get rid of waiting lists for Medicaid waivers, IQ limits and forcing someone to be in crisis to bypass waiting lists and get services.
3. Invest in affordable and accessible housing that is built in areas with robust public transit and access to grocery stores and other essential businesses.
4. Allow anyone with a disability to buy into Medicaid, Medicare and Medicaid waivers/long-term services and supports.
5. Embrace the social model of disability by training doctors and providers of long-term services and supports to respect the needs, rights and wants of people with disabilities.
6. Train all health, community agencies and disability providers on cultural competence, implicit bias, ableism, classism and racism to name a few.
7. Embrace flexible work arrangements that allow people with disabilities to work from home. COVID is proof that many jobs can be done from home. This is one of the easiest ways to eliminate transportation barriers and personal health risks during this and future pandemic outbreaks. It also saves time and money for us. It cuts down on commute time and the annoying headache of poor para-transit and public transit in general.
8. Vocational Rehabilitation can support person-centeredness by supporting folks to achieve dignified work in their preferred interest area, rather than sticking them in jobs they think are best for us. This is especially important when it comes to making the case for VR to pay for college classes and pursuing a career in disability policy.
9. As a society, we must eliminate the stigma that comes with seeking help or support from the government and community alike.
10. Tackle poverty among the disability, senior and other minority communities.
11. All disability and human service systems must embrace being truly person-centered.
12. Make high-speed internet access more available and affordable.
13. We must move away from Haves vs. Have Nots.
14. Disaster preparedness must include the needs of people with disabilities.
COVID-19 is teaching us a painful lesson — we are not immortal. If we live long enough, we will all join the disability club. When I see the reaction from the non-disabled world to this disruption and anxiety, I hope they come away with more empathy and patience for all the challenges people like me have had to battle for years.
COVID-19 is showing the world that we are not safe in segregated settings such as group homes, nursing homes, day programs, sheltered workshops and institutions. I believe the pandemic is only going to make us speed up our state and federal push of moving from a system centered to being truly person-centered. Community is for all.
COVID-19 is making it clear we need to change the way we interact with the climate. If not we will have worse virus outbreaks, and more fires, hurricanes and floods. COVID-19 is showing us that many jobs can be done from home when given access to technology and high-speed internet. We all must work harder to eliminate racism and ableism from all parts of society. I hope the new normal is more inclusive of diversity and disability than our old normal. Lead on!
Getty image by Debbie Eckert.
NICOLE LEBLANC BIO Nicole LeBlanc has a keen ability and interest in public policy and excels at communicating the needs of people with developmental disabilities to public officials. She worked for 8+ years at Green Mountain Self-Advocates (GMSA) in Montpelier, VT as Advocacy Director supporting her peers with disabilities to feel comfortable talking to their elected officials about what they need. While at GMSA, Nicole served as the Project Assistant for the Inclusive Healthcare Partnership project. For this initiative Nicole researched tools that would assist people with I/DD in getting their healthcare needs met. She additionally helped prepare the self-advocate team members for monthly meetings on topics such as transition from pediatric to adult healthcare providers, health and wellness, and healthcare policy. In 2012, Nicole completed a 10-week internship at the Administration on Intellectual and Developmental Disabilities through the Washington Center in Washington, DC and has earned a certificate of professional studies from the University of Vermont. In 2018 Nicole graduated from the VT LEND program. She was the 1st self advocate to complete it. Nicole is a natural leader chosen by her peers due to her unwavering commitment to speaking the truth to power. She has presented keynotes on the dignity of risk at statewide self-advocacy conferences in Alabama, Missouri and Rhode Island. Since 2011, Nicole has consulted for Self-Advocates Becoming Empowered and the Autistic Self-Advocacy Network developing self-advocacy tools and curriculums, presenting webinars and video blogs on the topics of healthcare, what is Autism, presuming competence, self-managed services, voter access and employment of people with disabilities. In August 2016 Nicole moved to the DC Suburb of Silver Spring MD to for a 6 month Paul Marchand Public Policy internship at AUCD . Ever since the day I stepped foot in Washington DC with my mentor Chester Finn I have always wanted to live in the political universe. My hobbies are following politics, ice skating, reading, going to conferences, hiking, exercising at the gym, traveling, hanging out with my best friends and alternative medicine. Nicole is one who is not willing to shy away from taking on big challenges and new adventures. In 2017 Nicole traveled to Iceland & Ireland as part of the AAIDD delegation. From November 15 2017 to Oct , 29th Nicole was the Advocacy specialist for the Southern Region of MD where she assists self advocates in dealing with the challenges of the service system. From February 2018 to September 2018 Nicole served as the Dr Ruth Sullivan policy fellow. From March 1 2018 to March 2019 Nicole was the SARTAC-Self Advocacy Resource and Technical Assistance Center fellow for NDRN where she created a booklet on advocating for policies that promote Competitive Integrated Employment . Otherwise known as Real Jobs for Real Pay. In April 2019 Nicole joined HSRI as the coordinator of the Person-Centered Advisory and Leadership Group (PAL-Group) in the National Center on Advancing Person Centered Practices. he will help to ensure that the PAL group informs and supports the direction of the efforts of the NCAPPS. In addition to supporting communication with the PAL Group, she will help with the development of cognitively accessible project materials and resources that reflect the experiences of people with disabilities. In summer of 2019 Nicole won the David Joyce Advocate of the Year award for outstanding policy advocacy on capital hill. In the past few months Nicole has been part of the Social Media team putting on Facebook events for ADA30 and National Disability employment awareness month. In Oct 2020 Nicole presented at Inclusion Works conference on “Turning Challnege into opportunity getting People with I/DD work from home jobs in light of COVID19. Nicole has just recently accepted a contract role with Not Dead Yet to educate the MD/VA legislature on the need to not pass laws on Doctor Assisted Sucide. In Dec Nicole started as the Self Advocate Advisor with TASH on the AOD Disability Employment TA Center where she researches material on employment and self advocacy, recruits focus group members, and provides TA to AODI grantees. This past may she keynote for WI DD council Employment First conference on dignity of risk, and person centered planning in employment. Her Motto is Control Your Own Destiny or Someone Else Will. She is always open to consulting opportunities.
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