Understanding the Olmstead Act

The Olmstead decision, formally known as the Olmstead v. L.C. decision, is a landmark ruling by the United States Supreme Court that significantly advanced the rights of individuals with disabilities. Here's a closer look at its history, structure, impact, and the influential figures behind its enactment.

The Birth of the Olmstead Decision

The Olmstead decision was handed down on June 22, 1999. The case involved two women, Lois Curtis and Elaine Wilson, who had mental disabilities and were voluntarily admitted to the Georgia Regional Hospital. Although their doctors determined that they were ready to move to a community-based setting, they remained institutionalized for several years due to the state's failure to provide community-based services. The Supreme Court ruled that the unjustified segregation of persons with disabilities constitutes discrimination in violation of Title II of the Americans with Disabilities Act (ADA).

Key Provisions of the Olmstead Decision

The Olmstead decision is rooted in the ADA's mandate to eliminate discrimination against individuals with disabilities. The main provisions include:

1. Community Integration: The decision requires states to provide community-based services for individuals with disabilities when such services are appropriate, the affected persons do not oppose community-based treatment, and the services can be reasonably accommodated, taking into account the resources available to the state and the needs of others with disabilities.

2. Reasonable Modifications: States must make reasonable modifications to their policies, practices, and procedures to avoid discrimination unless the state can demonstrate that making the modifications would fundamentally alter the nature of the services.

3. Comprehensive Plans: States are encouraged to develop comprehensive, effectively working plans for placing qualified persons with disabilities in less restrictive settings.

Influential Figures in the Making of the Olmstead Decision

Several key figures and advocacy groups played significant roles in the Olmstead case and its aftermath:

1. Lois Curtis and Elaine Wilson: The plaintiffs in the case whose experiences of unnecessary institutionalization highlighted the need for community-based services and set the stage for the landmark ruling.

2. Justice Ruth Bader Ginsburg: Delivered the opinion of the Court, which underscored the rights of individuals with disabilities to live in the community rather than institutions.

3. The Bazelon Center for Mental Health Law: Provided crucial legal representation and advocacy, helping to frame the arguments that led to the Court's decision.

4. ADAPT: A national grassroots community that organizes disability rights activists to engage in nonviolent direct action, supporting the implementation of the Olmstead decision through continued advocacy and activism.

Interesting Historical Context

The Olmstead decision came at a time when the disability rights movement was gaining momentum, building on the foundation laid by the ADA. The case highlighted the systemic issues within state-run institutions and the need for a shift towards community-based services. The decision was seen as a significant victory for the disability community, reinforcing the principle that individuals with disabilities have the right to live and participate fully in their communities.

The Impact of the Olmstead Decision

The Olmstead decision has had a profound impact on the lives of individuals with disabilities and on American society as a whole. Key outcomes include:

• Deinstitutionalization: The ruling accelerated the movement towards deinstitutionalization, encouraging states to develop and expand community-based services.

• Increased Access to Services: States have been prompted to improve access to community-based services, allowing individuals with disabilities to live more independently.

• Legal Precedent: The decision set a legal precedent that has been used in subsequent cases to advocate for the rights of individuals with disabilities.

• Comprehensive Planning: Many states have developed Olmstead Plans to outline their strategies for complying with the decision and expanding community-based services.

Related posts: #Disability_History, #Disability_Legislation #Disability_Rights,  #Olmstead_Act #Policy_Law

Thank you Lois Curtis

Today Lois Curtis passed away. She along with Elaine Wilson were the plaintiffs in the landmark 1999 Olmstead v. L.C case, which jumpstarted de-segregation and de-institutionalization of the disabled. It paved the way for community based supports for the disabled. 

Over the summer I also had the opportunity to be part of a White House panel discussion on the occasion of the anniversary of the Olmstead Act. The Olmstead Act is more significant than we can even think. Imagine, just a few decades ago, people with more significant disabilities (which would have included "higher-support" autistics like me) were simply put into institutions. 

Problem solved for society with the disabled tucked out of sight!! Case closed!! 

In fact, when I was young, families were still being advised to send their autistic child away before they grew too attached to that child. 

Folks like Lois did not get to choose. She had to fight to get out of an institution. 

What if you did not even have a "voice" (like many "higher-support" autistics) to protest even as your family was told that this was what was "best" for you by all the "well-meaning" professionals. 

Thank you Lois for speaking up. 

As a child I don't think I quite understood what institutions were. The closest I came to seeing a visual was was whatever was shown briefly in the movie, Rainman. 

It was not until I got into college and began my Disability Studies courses, that I began to understand how horrifying institutions and the idea of institutionalization was for the disabled. My very first disability studies course had been with Victor Pineda. 

On the very first day of class he screened a documentary called "Lives Worth Living" on the disability rights movement. One of the most shocking and horrifying scenes in that documentary had been Willowbrook, one such institution in New York housing the disabled. It showed the disabled children living in degrading and filthy conditions. The doctors at Willowbrook themselves had grown so alarmed that they had invited reporter Geraldo Rivera's to do an expose which shocked the world. 

I used to think my low expectation special education classrooms were degrading enough, but I shudder to think of what living in those inhumane institutions would have been like. In fact, in the 2020 documentary Crip Camp, there is a mention of a camper from Willowbrook "who would stuff himself with food till he got sick" as he would not get adequate food at Willowbrook. 

Such history makes the Olmstead Act all that more significant, and meaningful to folks like me. 

"The Olmstead decision has led the government to make more opportunities for people with disabilities to get services outside of institutions. Advocates and the government use the Olmstead decision to fight for disabled students’ rights to learn in the same classroom as non-disabled students. Advocates and the government use Olmstead to fight for disabled workers’ rights to work in the same workplace as non-disabled workers, and earn a competitive wage." (ASAN Remembers Lois Curtis)

Though we still have miles to go on disability rights on multiple fronts, I am so deeply appreciative of such disability rights icons who have hewn out the path that many of us now almost take for granted. 

Thank you Lois 

Related posts: #Disability_History, #Disability_Legislation #Disability_Rights,  #Olmstead_Act #Policy_Law

Celebrating 25 Years of the Olmstead Decision

 Celebrating 25 Years of the Olmstead v. L.C Decision

Today marks the 25th anniversary of the landmark 1999 Olmstead v. L.C. case, a pivotal moment that ignited the de-segregation and de-institutionalization of people with disabilities. This case paved the way for community-based supports and services, transforming the lives of countless individuals.

Two years ago, I had the honor of participating in a White House panel discussion commemorating the Olmstead Act's anniversary. The significance of the Olmstead Act cannot be overstated. Just a few decades ago, individuals with significant disabilities, including "higher-support" autistics, were often placed in institutions, hidden away from society.

Back then, families were still advised to send their autistic children away before they became too attached. Many "higher-support" autistics, unable to advocate for themselves, were at the mercy of "well-meaning" professionals who claimed institutionalization was best.

As a child, I didn't fully grasp what institutions were, my only reference being brief scenes from the movie Rain Man. It wasn't until college, during my Disability Studies courses with Professor Victor Pineda, that I truly understood the horrors of institutionalization. On the first day of class, we watched the documentary Lives Worth Living, which highlighted the disability rights movement. One of the most shocking segments featured Willowbrook, an institution in New York where children with disabilities lived in appalling conditions. The doctors at Willowbrook were so alarmed that they invited reporter Geraldo Rivera to expose the situation, shocking the world.

I used to think my low-expectation special education classrooms were degrading enough, but the thought of living in such inhumane institutions is truly chilling. The 2020 documentary Crip Camp mentions a camper from Willowbrook who would overeat to the point of sickness because he never got enough food there.

This history underscores the profound significance of the Olmstead Act for people like me. While we have made significant strides in disability rights, there is still much work to be done. I am deeply grateful to the disability rights icons who have paved the way, making it possible for many of us to enjoy the freedoms we often take for granted.

Though challenges remain, we continue to move forward, inspired by the resilience and determination of those who fought for our rights. Here's to 25 years of progress and many more to come.

Related posts: #Disability_History, #Disability_Legislation #Disability_Rights,  #Olmstead_Act #Policy_Law

A Timeline of Autism

Early Observations (Pre-1940s): Autism Before Its Recognition

• 1799: French physician Jean-Marc Gaspard Itard reports on Victor, the "Wild Boy of Aveyron," a child with social withdrawal and language delays, traits that later align with autism.
• 1908: Swiss psychiatrist Eugen Bleuler coins the term "autism" (from the Greek "autos," meaning self) to describe social withdrawal in individuals with schizophrenia. This sets the stage for early misconceptions, linking autism to schizophrenia for decades.

1940s: First Recognition of Autism as a Disorder

• 1943: Leo Kanner, an Austrian-American psychiatrist, publishes Autistic Disturbances of Affective Contact, describing 11 children with distinct traits like social withdrawal, communication issues, and repetitive behaviors. He coins the term "early infantile autism" and believes it is a lifelong condition caused by an innate inability to form affective contact. Kanner also suggests a biological basis but notes that parenting styles could contribute, which lays the groundwork for later misguided theories around 'refrigerator moms'
• 1944: Austrian pediatrician Hans Asperger publishes a paper on children with behaviors similar to Kanner’s description but with stronger verbal abilities. Asperger describes the condition as "autistic psychopathy", later known as Asperger syndrome.
• 1947: Kanner notes that many autistic children have above-average memory and specific areas of talent, observing what would later be understood as savant syndrome.

1950s: Psychoanalytic Theories and Misunderstandings

• 1950s. Institutionalization is common for autistic children (and real life institutions don't look the high end resort-like setting shown in RainMan)
• 1950s: Bruno Bettelheim promotes the "refrigerator mother" theory, blaming emotionally distant mothers for causing autism. This theory, grounded in psychoanalysis, dominates for decades and contributes to a stigma around autism, despite later being debunked. In 1967, Bettelheim publishes The Empty Fortress, further expanding on his theory by comparing autistic children to prisoners in emotional isolation, a concept later widely discredited for its lack of scientific basis.
• 1956: Researcher Paul Eugen Bleuler, who first coined "autism" to describe withdrawal in schizophrenia, influences early confusion between autism and schizophrenia. Autism is often misdiagnosed as childhood schizophrenia, or emotional disturbance as there is little understanding of its distinct nature.

1960 - 70s: The Rise of Advocacy and Early Research Shifts

• 1964: Temple Grandin, who later becomes one of the most famous autistic advocates, is diagnosed with autism at age 16. Her later work will help shed light on sensory sensitivities in autism and emphasize the potential of autistic individuals.
• 1964: Psychologist Bernard Rimland, the father of an autistic child, publishes Infantile Autism, which challenges the refrigerator mother theory and argues for a biological cause of autism. Rimland's work is pivotal in shifting the focus toward neurological and genetic research.
• 1964: Civil Rights Bill Bypasses People with Disabilities. While the Act helps end discrimination against racial minority groups and women in the workplace, it does not make provision for people with disabilities. The difference is that when considering civil rights for disabilities you need not just a seat on the bus but a way to get into that bus. 
• 1965: Rimland along with Ruth Sullivan found the Autism Society of America (ASA) one of the first national organizations in the US dedicated to autism advocacy, supporting families and promoting research.
• 1967: "Autism: The Invisible Wall", a television documentary in the UK, helps bring autism to public attention by focusing on the challenges and misunderstood nature of autistic individuals.
• 1967: ICD-8 (Eighth Revision). The International Classification of Diseases released by Word Health Organization includes childhood psychosis and other related terms, but autism itself is not yet a distinct diagnostic category. Autism is often conflated with schizophrenia or broader childhood psychotic disorders.
• 1974: Last of the Ugly Laws Repealed. 
• 1975: The US passes the Education for All Handicapped Children Act (EAHCA), which mandates free public education for children with disabilities, including autism. This later evolves into the Individuals with Disabilities Education Act (IDEA) in 1990.
• 1977: Twin studies by Folstein and Rutter provide the first strong evidence for a genetic component to autism, marking a major shift away from psychoanalytic theories. This study reveals that autism has a higher concordance rate in identical twins than in fraternal twins.
• 1977: ICD-9 (Ninth Revision) introduces Infantile Autism under the category of pervasive developmental disorders (PDD). This marks the first time autism is officially recognized as a separate diagnostic entity in the ICD system. The criteria are still relatively broad, and autism is seen as a disorder affecting early childhood development.

1980s: Diagnostic Shifts and Broader Recognition

• 1980: The DSM-III officially recognizes autism as a distinct diagnosis, separate from childhood schizophrenia, under the term "Infantile Autism". This formalizes autism’s recognition within psychiatry.
• 1981: British psychiatrist Lorna Wing introduces the term Autism Spectrum Disorder (ASD), emphasizing the broad range of abilities and challenges in autistic individuals. She also popularizes Asperger syndrome in the English-speaking world.
• 1985: The diagnostic ratio of autism is estimated to be 4 to 5 in every 10,000 children. This reflects limited awareness and more restrictive diagnostic criteria.
• 1987: The DSM-III-R revises the criteria for autism, leading to increased diagnoses.
• 1987: Behavioral psychologist Ivar Lovaas publishes results of Applied Behavioral Analysis (ABA) in improving behaviors in some autistic children. ABA remains controversial today due to criticisms from the autistic community about its social validity and ethics of behavior modification and its use of aversives like shocks to achieve the higher success results. Shocks continue to be used in centers like the JRC (Judge Rotenberg Center) even today. 
• 1988: The film Rain Man, starring Dustin Hoffman as an autistic savant, brings autism into the cultural spotlight, although it reinforces stereotypes of autism as tied to intellectual disability or savant syndrome.

1990s: Expanding the Spectrum and Advocacy Growth

• 1990: Americans with Disabilities Act signed into law by Pres George HW Bush.
• 1990: The Individuals with Disabilities Education Act (IDEA) reinforces the right to free public education and Individualized Education Programs (IEPs) for students with autism, helping ensure their integration into the educational system.
• 1991: Autism is officially added as a special education category under IDEA, securing services for autistic students.
• 1993: The National Autistic Society (NAS) in the UK launches "Autism Awareness Year", one of the first large-scale efforts to raise public awareness about autism.
• 1993: ICD-10 (Tenth Revision) significantly revises the classification of autism. Autism Spectrum Disorders (ASD) are grouped under Pervasive Developmental Disorders (PDD). Subtypes include Childhood Autism, Atypical Autism, Asperger’s Syndrome, Rett Syndrome, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). ICD-10’s structure allows for a more nuanced understanding of autism and its variations, with greater distinction between different developmental disorders.
• 1994: The DSM-IV expands the definition of autism to include Asperger syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), marking a significant shift in recognizing autism as a spectrum. The diagnostic ratio rises to about 1 in 1,000 children.
• 1995: The Yale Child Study Center launches the Yale Early Social Cognition Program, pioneering research on autism's social cognition and brain development.
• 1997: Lorna Wing introduces the "triad of impairments": social interaction, communication, and flexibility of thought, which becomes a core diagnostic feature of autism. This framework helped shape diagnostic criteria and broadened the understanding of autism as a spectrum.
• 1997: The UN's Standard Rules on the Equalization of Opportunities for Persons with Disabilities (adopted in 1993) begins to include autism under broader disability rights frameworks, encouraging global awareness and inclusion
• 1998: A study by Andrew Wakefield links the MMR vaccine to autism leads to much controversy.
• 1999: The Treatment and Education of Autistic and related Communication-handicapped Children (TEACCH) program gains recognition for early intervention and structured teaching.
• 1999: Olmstead Act requires deinstitutionalization. 

2000s: Rise of Neurodiversity and Genetic Research

• 2000: Autism Speaks is founded, becoming one of the largest autism advocacy organizations, though it faces criticism from autistic self-advocates for its earlier messaging on curing autism rather than supporting neurodiversity.
• 2001: The United Nations establishes World Autism Awareness Day, observed annually on April 2, raising global awareness about autism.
• 2002: The Autism Genome Project is launched and is one of the largest international efforts to study the genetic basis of autism
• 2003: Autism Network International (ANI) starts hosting Autreat, a retreat for autistic individuals designed by autistic people. Autreat becomes a symbol of the burgeoning autistic self-advocacy movement.
• 2005: Beijing Stars and Rain, China’s first non-governmental organization for autism, begins gaining international attention for promoting autism education and parent training programs. The organization becomes a model for other regions in China, raising awareness in a country with limited services for autism.
• 2001-2007: Autism diagnosis rates surge. By 2007, the CDC reports autism prevalence at 1 in 150 children. Improved diagnostic criteria and growing awareness contribute to these higher rates.
• 2006: The Autism Self-Advocacy Network (ASAN) is founded by Ari Ne'eman advocating for autistic individuals to have a voice in policy and research decisions.
• 2006: The documentary "Autism: The Musical" is released, portraying the lives of five autistic children and their participation in a musical production, showing the diversity of the autism spectrum and challenging preconceived notions.
• 2006: The Combating Autism Act (CAA) is signed into law by President George W. Bush. It authorizes increased federal funding for autism research, early detection, intervention, and services. It also establishes the Interagency Autism Coordinating Committee (IACC) to coordinate federal efforts related to autism and services. This marked the first formal effort by the US government to streamline and prioritize autism research across various agencies.
• 2007: The Autism Genome Project publishes its first major findings identifying several genetic markers linked to autism, though no single "autism gene" is found. Early findings reveal the complexity of autism, linked to hundreds of different genes, each contributing in small ways.
• 2007: The UN General Assembly designates April 2 as World Autism Awareness Day (WAAD), increasing global recognition and advocacy efforts.
• 2008: The Convention on the Rights of Persons with Disabilities (UNCRPD) is adopted by the United Nations, affirming the rights of individuals with disabilities, including autistic individuals, to equal access in education, employment, and healthcare.
• 2008: The WHO supports the UNCRPD, pushing for global health strategies that include autism within the broader disability rights movement.
• 2009: Latin America takes steps towards developing autism strategies with the creation of Red Espectro Autista Latinoamerica (REAL), a regional network advocating for autism diagnosis, intervention, and inclusion throughout Latin America. Countries such as Argentina, Brazil, and Mexico begin improving public understanding and launching pilot autism support programs.
• 2009: The IACC releases its first Strategic Plan for Autism Research, outlining key priorities for autism research. It sets goals to improve early identification, better understand autism’s biology, and develop new interventions and services. This plan becomes a guiding document for federal funding and research efforts.
• 2009: Rosa's Law enacted. Pres Obama signs legislation that replaces the term "Mental Retardation" with term "Intellectual Disability". The Law is named for 9 year old Rosa Marcellino, a young advocate with Down's Syndrome

2010s: Scientific Advancements and Cultural Shifts

• 2011: Ari Ne'eman becomes the first openly autistic person appointed to the US National Council on Disability, a milestone in autistic representation in federal policymaking.
• 2011: The Combating Autism Reauthorization Act (CARA) extends the provisions of the original act, continuing federal funding for autism research, services, and early interventions. It emphasizes improving services for autistic children and adolescents
• 2011: The IACC updates its Strategic Plan with a greater focus on lifespan issues, including services for autistic adults, employment, and quality of life. The update also emphasizes the need for research into co-occurring conditions such as epilepsy, gastrointestinal issues, and mental health disorders in autistic individuals.
• 2012: The "Autism at Work" initiative is launched by major corporations like SAP, Microsoft, and JP Morgan Chase, focusing on hiring autistic individuals for their unique strengths, especially in tech and data analysis.
• 2012: Brazil passed the Autism Law ("Lei Berenice Piana"), recognizing autism as a disability, which entitled autistic individuals to full access to education and healthcare. This law set a global precedent for autism recognition in developing nations.
• 2012: The Autism Society of South Africa leads efforts to raise awareness and advocate for governmental support for autistic individuals. Although access to services remains limited, the organization plays a key role in educating the public and promoting early intervention programs.
• 2013: The DSM-5 combines autism subtypes (Autism, Asperger syndrome, PDD-NOS) into one unified diagnosis, Autism Spectrum Disorder (ASD), reflecting the diversity of autistic experiences. The prevalence rate continues to rise, with the CDC estimating 1 in 88 children diagnosed.
• 2013: WHO focus on Autism in Low and Middle Income Countries. The WHO emphasizes the lack of autism services in low- and middle-income countries and highlights the global disparity in autism diagnosis, treatment, and support services. WHO launches efforts to promote capacity-building and improve access to autism services worldwide
• 2014: The CDC estimates 1 in 68 children in the US are diagnosed with autism, reflecting improved diagnostic practices and growing awareness.
• 2014:The Autism CARES Act (which stands for Autism Collaboration, Accountability, Research, Education, and Support) is passed, reauthorizing and expanding federal efforts under the CAA. It introduces a new focus on lifelong services and supports for autistic adults, addressing the need for transitioning from childhood services to adult care.
• 2014: The WHO includes autism in its Comprehensive Mental Health Action Plan (2013-2020), calling for international collaboration to enhance early identification, intervention, and care for individuals with autism. This plan focuses on improving mental health services for people with neurological and developmental disorders, including autism, especially in resource-poor settings
• 2014: South Africa holds Africa's first National Autism Conference, bringing autism research and advocacy to the continent. South Africa's focus grows on early diagnosis and intervention, as well as inclusion in education.
• 2014: The Global Autism Public Health (GAPH) Initiative, launched by Autism Speaks, collaborates with ministries of health in Bangladesh, Kenya, Mexico, South Africa, and other countries to create national autism action plans. These plans focus on building capacity for early detection, screening, training professionals, and raising public awareness. In Bangladesh, the Shuchona Foundation leads national autism awareness campaigns, addressing the need for policies that include neurodevelopmental disorders in healthcare frameworks. In Kenya, GAPH partners with local organizations to train healthcare providers and teachers, helping to identify autism early and provide educational support.
• 2015: The first Autistic Pride Day is celebrated, organized by autistic self-advocates to promote acceptance and emphasize the strengths of neurodiversity.
• 2015: Countries like Saudi Arabia and Jordan begin developing autism centers and services in response to increased autism awareness in the region. In Saudi Arabia, the Jeddah Autism Center provides early intervention and support programs, becoming a key resource for families in the region.
• 2017: India issues its first National Guidelines on Autism under the Ministry of Health and Family Welfare. These guidelines emphasize the need for early screening, public awareness, and inclusive education for autistic individuals. They also advocate for better training for healthcare professionals to recognize autism in early childhood.
• 2017: The CDC reports autism prevalence has risen to 1 in 59 children, driven by broader diagnostic practices and increased awareness.
• 2017: The IACC releases a new Strategic Plan that broadens its focus to include employment, healthcare, and service needs for autistic adults. This plan highlights the importance of research aimed at improving the quality of life for autistic individuals throughout their lifespan, with an emphasis on transitioning to adulthood.
• 2017: The Journal of Autism and Developmental Disorders publishes a study showing the higher likelihood of co-occurring conditions, such as anxiety and epilepsy, in autistic individuals. This leads to greater focus on holistic healthcare for autistic people.
• 2018: The World Bank and the World Health Organization (WHO) partner with several South Asian countries, including Nepal, Sri Lanka, and Bangladesh, to promote autism-friendly healthcare services. This collaboration focuses on creating autism awareness campaigns and building healthcare capacity for diagnosis and treatment in resource-limited areas.
• 2019: The Autism CARES Act reauthorization is signed into law, continuing the initiatives set forth by the previous acts. It further expands the focus on autistic adults and aims to address health disparities, especially among underserved communities, including racial and ethnic minorities and rural populations.
• 2019: ICD-11 (Eleventh Revision) ntroduces a major change by adopting the term Autism Spectrum Disorder (ASD), consolidating various autism subtypes (such as Asperger’s Syndrome and PDD-NOS) under a single umbrella diagnosis, similar to the changes made in the DSM-5 (2013). The focus shifts to recognizing autism as a spectrum with varying levels of support needs. ICD-11 also introduces a focus on functional impairments associated with ASD and acknowledges the need for varying levels of support across the lifespan, making the classification more aligned with current research on autism as a lifelong condition.
• 2019: Climate activist Greta Thunberg, an openly autistic individual, gains global recognition, challenging stereotypes about what autistic individuals can achieve.
• 2019: Kenya passes the Autism and Developmental Disabilities Bill, becoming one of the first African countries to legislate support services for autism. The bill mandates government funding for special education programs, early diagnosis, and community-based support for autistic individuals.

2020s: Expanding Focus on Lifespan and Global Support

• 2020: The CDC reports autism prevalence at approximately 1 in 54 children. Research increasingly focuses on co-occurring conditions, such as anxiety and epilepsy, as well as autism across the lifespan, including in aging adults.
• 2020: The IACC shifts some of its focus to the impact of the COVID-19 pandemic on the autistic community, particularly in relation to accessing healthcare and educational services through telehealth and virtual platforms. The committee begins addressing the unique challenges the pandemic poses for autistic individuals and their families.
• 2020: Greta Thunberg, the autistic Swedish climate activist, is named TIME Person of the Year, bringing further visibility to autism in public life and challenging misconceptions about what autistic individuals can achieve.
• 2020: WHO launches Global Initiative on Autism a project aimed at addressing the challenges of autism diagnosis and care in low- and middle-income countries. The initiative focuses on improving training, early diagnosis, and intervention programs, while also raising global awareness about autism.
• 2020: European Autism Action: The European Parliament passed a resolution for a European strategy on autism, highlighting the need for coordinated autism policies across Europe, focusing on early intervention, education, and employment.
• 2020: Autism advocacy continues to grow in Latin America, with Brazil leading efforts to promote inclusive education and early diagnosis programs. Mexico and Argentina strengthen national policies supporting autistic individuals in healthcare and education, advocating for better training for educators and healthcare workers.
• 2021: The World Health Organization (WHO) releases updated guidelines on autism, stressing early diagnosis and ongoing support services throughout life, especially in low- and middle-income countries. WHO emphasizes the importance of developing national autism strategies within countries to ensure sustainable services for autistic individuals. These strategies encourage governments worldwide to invest in autism. research, diagnosis, and community-based care
• 2021: Lifelong Autism Services become a major advocacy focus, with governments worldwide beginning to recognize the lack of adult services and employment opportunities for autistic individuals.
• 2021: The "Lancet Commission on the Future of Care and Clinical Research in Autism" releases recommendations for prioritizing lifelong care, emphasizing the need for better adult diagnostic tools and services for aging autistic populations.
• 2021-2030: Autism-Europe: This umbrella organization works with the European Union to promote the rights of autistic people across Europe, helping to secure the European Disability Strategy (2021-2030), which includes provisions for autistic individuals.
• 2021: In Sub-Saharan Africa, countries like Uganda, Ghana, and Tanzania begin developing autism awareness campaigns with support from international organizations. Programs focus on educating communities about autism acceptance and improving access to diagnosis in rural areas. In Uganda, the Autism Awareness Care and Training Centre (AACT) plays a vital role in raising awareness and offering training for parents and teachers.
• 2022: In Brazil, the Autistic Person’s Statute is implemented, protecting the rights of autistic individuals and establishing a national policy that mandates inclusive education, healthcare access, and employment support for individuals on the spectrum. Other Latin American countries, like Chile and Colombia, follow suit, enacting autism legislation to ensure better services and protections for their autistic populations.
• 2022: Autism is increasingly understood through the lens of the neurodiversity movement, emphasizing a strengths based approach.

Read more on timelines... An Evolving Landspace of Autism Research...

ADA is 34 years old

Celebrating the 34th Anniversary of the Americans with Disabilities Act

On July 26, 1990, President George H.W. Bush signed the Americans with Disabilities Act (ADA) into law, marking a historic milestone for disability rights. The ADA has been instrumental in prohibiting discrimination against the disabled in all areas of public life, including jobs, schools, transportation, and public and private places open to the general public.

The journey to the ADA's signing was fueled by the relentless efforts of dedicated disability rights activists. One pivotal moment in this movement was the televised and widely viewed Capitol Crawl on March 12, 1990. Hundreds of disability rights activists gathered in Washington, D.C., to urge Congress to pass the ADA. As part of the protest, dozens of individuals with disabilities left their wheelchairs and crawled up the 83 stone steps of the U.S. Capitol building, dramatically demonstrating the barriers they faced in everyday life. Among them was an 8-year-old girl named Jennifer Keelan, whose participation powerfully symbolized the need for change. Her determination and courage, along with that of others, highlighted the urgent need for comprehensive legislation to protect the rights of people with disabilities.

Key figures in the disability rights movement played crucial roles in advocating for the ADA. The late Judith Heumann (we miss you Judy), a lifelong advocate for the rights of people with disabilities, was instrumental in the fight for the ADA. Her leadership and tireless advocacy helped bring disability rights to the forefront of national consciousness. Ed Roberts, known as the father of the independent living movement, also significantly influenced the disability rights movement, emphasizing the importance of self-determination and community-based support. There were countless others whose contributions were vital in making the ADA a reality, reflecting a broad and united effort toward equality and inclusion.

The ADA consists of five titles, each addressing different aspects of public life:

1. Title I – Employment: Prohibits discrimination against individuals with disabilities in employment and requires employers to provide reasonable accommodations.
2. Title II – Public Services: Ensures that people with disabilities have equal access to public services, programs, and activities, including public transportation.
3. Title III – Public Accommodations: Prohibits discrimination in public accommodations such as restaurants, hotels, and stores, and requires accessible facilities.
4. Title IV – Telecommunications: Mandates accessible telecommunications services, including relay services for individuals with hearing and speech impairments.
5. Title V – Miscellaneous Provisions: Contains various provisions, including protections against retaliation and coercion, and guidelines for the implementation of the ADA.

It's humbling that laws like the ADA enable disabled individuals like me to avail of opportunities such as getting into college or even embarking on a PhD journey. Such a thing would have been unimaginable earlier. The ADA's passage represents the collective effort and resilience of countless individuals who fought for equality and accessibility. As we commemorate the 34th anniversary of the ADA, we honor the legacy of those activists and reaffirm our commitment to advancing the rights and inclusion of people with disabilities. 

https://www.whitehouse.gov/briefing-room/presidential-actions/2024/07/25/a-proclamation-on-the-anniversary-of-the-americans-with-disabilities-act-2024/

Related Posts: [Disability Legislation], [Disability Rights], [Disability History] [Autism Cares], [ADA], [Capitol Crawl] [Olmstead Act], [Section 504],