Guest post by Nicole LeBlanc, coordinator of the Person-Centered Advisory and Leadership Group for NCAPPS
This year the Disability Community will celebrate the 30th Anniversary of the Americans with Disabilities Act that was signed into law in July 1990 by President George HW Bush. Upon signing this historic piece of bipartisan legislation he is quoted 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, there are two areas where we as a society continue to fall short–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 for more training of medical providers, higher rate of pay for doctors who provide care to us and more focus on prevention and the social determinants of health.
Direct Support Professionals (DSP’s) are the ones best positioned to support us in achieving better outcomes. 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 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 and 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 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 & Vision of the Next 30 years of ADA
As we celebrate and reflect on 30 years of the Americans with Disabilties Act & 100 years of Vocational Rehabilitation during a national pandemic, it is especially important to use this down time 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 Audrey Lorde once said, “There is no such thing as single issue struggle because we do not live single issue lives.” We are all impacted by all social justice movements. Ex: Climate Justice, Economic Justice, Migrant Justice, Civil Rights, Women’s Equality, Worker 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.
Over the next 30 years with the ADA it is my hope that the COVID19 pandemic will provide a greater sence of urgency in the need to create a world that is more inclusive and accessible for all people with disabilties. 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 hopefully increase our life expectancy.
2 End the institutional bias in Medicaid by making access to Home-Community Based Waiver Supports an entitlement. Also Get rid of wait lists, IQ limits, and needing to be in crisis to get services, as part of eligibility criteria.
3 Invest in afforable 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 foot.
4 Allow anyone with a disability to buy into Medicaid, Medicare and Long Terms 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 disabilties.
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 (VR) 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 for a degree to get a job in disability policy.
9 As a soceity we must eliminate the stigma that comes with seeking help or support from the government and community alike.
10 Tackle poverty among the poor, disability, senior and other minority communities.
11 All disability and human service systems must embrace being truly person-centered.
12 We must move away from Haves vs Have Nots.
13 Disaster Prepardnesses must include the needs of people with disabilties.
Overall COVID-19 is giving us a painful lesson in 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.
COVID19 is showing the world that we are not safe in segregated settings. (Ex: 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. All means ALL. Covid19 is telling us we need to live in the moment and not always be in a rush. COVID19 is making it clear we need to change the way we interact with the climate. If not we will have worse virus outbreaks. COVID19 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.