October is Disability History Month. Nicole talks about the 30th Anniversary of ADA and what she hopes for the next 30 years.
By Nicole LeBlanc
This year the Disability Community will celebrate the 30th Anniversary of the Americans with Disabilities Act (ADA) that was signed into law on July 1990 by President George HW Bush.
Upon signing this historic piece of bipartisan legislation Bush is quoted as saying “Let the shameful walls of exclusion com 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 in is 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 under-served population (MUP). We often have higher cost and worse health outcomes than the general population. Being declared a MUP By the CDC or congress could allow of more training of medical providers, higher rate of pay for doctors provide care to us and more focus on prevention and the social determinants of health.
Direct Service Personnel (DSP’s) are the ones best positioned to support us in achieving better outcomes. It is my hope that the next 30 years that 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 Corona virus pandemic only intensifies the urgent need to make this happen at all levels of government. This pandemic is defiantly giving the non-disabled world an idea of what its like to be disabled.
The Disability Community is the world’s largest minority group yet we have so much further to go in achieving equality and equity for all.
Lastly we need to shift the disability benefit 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 benefit system and expand access to supported employment for those without access to home-community based services. Only after we have done these and many other things will we see a societal shift in attitudes about disability.
It is my hope that when this nightmarish pandemic will ignite an intense focus on addressing health disparities and attitudinal barriers faced by people with disabilities so that we can be valued for who we are and be given equal access to care, and support across all settings.
My Vision, Reflection for a New and Better Normal After Covid and a Vision for the next 30 years of ADA.
As we celebrate and reflect on 30 years of the Americans with Disabilities Act & 100 years of Vocational Rehabiltation during a national pandemic, it is especially important to use this down time and crisis dream of a new and better normal. One that is accessible, accommodating and respects the intersectionality of all social justice movements.
As civil rights activist 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 the variety of social justice movements. (Ex. climate justice, economic justice, migrant justice, civil rights, women’s rights, worker’s rights and disability rights are all interconnected.) 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 faces discrimination due to race, gender, disability in all aspects of society.
Over the next 30 years with the ADA it is my hope that the Covid-19 pandemic will provide a greater sense of urgency in the need to create a world that is more inclusive and accessible for all people with disabilities. Some of the ways in which to make this happen include:
1. Declaring people with I/DD a Medically Under-Served population and requiring that all healthcare providers receive training on disability awareness, ableism and racism. Doing so will eliminate the poor health outcomes and increase our life expectancy.
2. End the institutional bias in Medicaid by making access to Home-Community Based Waiver Supports an entitlement. Also eliminate wait lists, IQ limits, and the need to be in crisis to get services, as part of eligibility criteria.
3. Invest in affordable and accessible housing that is build in areas with robust public transit access, along with areas where it is easy to get to places on food.
4. Allow anyone with a disability to buy into Medicaid, Medicare and long-term services and supports.
5. Embrace the social model of disability by training doctors and providers of long-term services and supports on the needs, rights, wants of people with disabilities.
6. Train all health, community agencies and disability providers on cultural competence, implicit bias, ableism, classism, and racism.
7. Embrace flexible work arrangements that allow people with disabilties 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 (VR) can support person-centeredness by supporting folks to achieve dignified work in their preferred interest area rather than sticking them in jobs others think are best for us. This is especially important when it comes to making the case for VR to pay for college classes for a degree to get a job in disability policy.
9. Disaster preparednesses must include the needs of people with disabilities.
As a society we must eliminate the stigma that comes with seeking help or support from the government and community alike. We must overcome poverty among the poor, disabied, senior and other minority communities. All disability and human services must embrace being truly person-centered.
We must move away from Haves vs Have Nots.
Overall COVID-19 is giving us a painful lesson that we are not immortal. If we all live long enough we will all join the disability club. On a personal level when I see the reaction from the non-disabled world when it comes to routine disruption and anxiety , I hope they come away with more empathy and patience for all the challenges people like me have had to battle through.
COVID-19 is showing the world that we are not safe in segregated settings. (Examples: Group Homes, Nursing Homes, Day Programs, Sheltered Workshops, and Institutions). We all must work harder to eliminate racism and ableism from all parts of society. COVID 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 and all means all.
Covid-19 is telling us we need to live in the moment and not always be in a rush. 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. Covid-19 is showing us that many jobs can be done from home when given access to technology and high speed internet. Access to high speed internet is another issue we must address if we are to close the digital accessibility divide.
I hope that the new normal is more inclusive of diversity and disability than our old normal.
LEAD ON
Nicole is employed at the Human Services Resources Institute where she coordinates the Person-Centered Advisory and Leadership Group for the National Center on Advancing Person-Centered Practices and Systems (NCAPPS), ensuring that the Group informs and supports the direction of the NCAPPS efforts. She also helps develop cognitively accessible project materials and resources that reflect the experiences of people with disabilities. Since November 2017, Nicole has been the advocacy specialist for the Southern Region of Maryland 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 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 (‘Real Jobs for Real Pay’).
Nicole LeBlanc was the 2019 recipient of the David Joyce Advocate of the Year Award by the Autism Society of America. The award is given to an individual with autism who has advanced the well-being of others on the spectrum.
