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Disability and Health Stories from People Living with a Disability

• Nickole's Story
• Jerry's Story
• Justin's Story
• Suhana's Story

Real Stories from People living with a Disability

Nickole cheron’s story.

In 2008, a rare winter storm buried Portland, Oregon under more than a foot of snow. The city was gridlocked. Nickole Cheron was stuck in her home for eight days. Many people would consider that an inconvenience. For Nickole, whose muscles are too weak to support her body, those eight days were potentially life-threatening.

Born with spinal muscular atrophy, a genetic disease that progressively weakens the body’s muscles, Nickole is fully reliant on a wheelchair and full-time caregivers for most routine tasks. Being alone for eight days was not an option. So Nickole signed up for “ Ready Now! pdf icon [PDF – 4.8MB] external icon ,” an emergency preparedness training program developed through the Oregon Office of Disability and Health external icon .

“The most important thing I learned from ‘Ready Now!’ was to have a back-up plan in case of an emergency situation ,” she said. “When I heard the snow storm was coming, I emailed all my caregivers to find out who lived close by and would be available. I made sure I had a generator, batteries for my wheelchair, and at least a week’s supply of food, water and prescription medication.”

Nickole said the training was empowering, and reinforced her ability to live independently with a disability. She felt better informed about the potential risks people with disabilities could encounter during a disaster. For example, clinics might close, streets and sidewalks might be impassable, or caregivers might be unable to travel.

Among the tips Nickole learned from Oregon’s “Ready Now!” training are:

• Develop a back-up plan. Inform caregivers, friends, family, neighbors or others who might be able to help during an emergency.
• Stock up on food, water, and any necessary prescription medications, medical supplies or equipment. Have enough to last at least a week.
• Make a list of emergency contact information and keep it handy.
• Keep a charged car battery at home. It can power electric wheelchairs and other motorized medical equipment if there is an electricity outage.
• Learn about alternate transportation and routes.
• Understand the responsibilities and limitations of a “first responder” (for example, members of your local fire department of law enforcement office) during a disaster.

“This training shows people with disabilities that they can do more to triage their situation in a crisis than anyone else can,” she said. “‘Ready Now!’ encourages people with disabilities to take ownership of their own care.”

CDC would like to thank Nikole and the Oregon Office of Disability and Health external icon for sharing this personal story.

Learn about emergency preparedness for people with disabilities »

Jerry’s Story

Jerry is a 53 year old father of four children. He’s independent, has a house, raised a family and his adult kids still look to him for support. Jerry recently retired as a computer programmer in 2009, and competes and coaches in several sports. This “healthy, everyday Joe, living a normal life” has even participated in the Boston Marathon. Jerry also has had a disability for over 35 y ears. In 1976 on December 3 (the same day that International Persons with Disabilities Day is recognized) Jerry was hit by a drunk driver. The accident left him as a partial paraplegic.

Jerry’s life is not defined by his disability. He lives life just like anyone else without a disability would live their life. “There’s lots I can do, and there are some things that I can’t do,” said Jerry. “I drive, I invest money. I’m not rich, but I’m not poor. I enjoy being healthy, and being independent.”

As a person with a disability, however, Jerry has experienced many barriers. Recovering from recent rotator cuff surgery, his rehabilitation specialists “couldn’t see past his disability”, administering tests and delivering additional rehabilitation visits that a person without a disability wouldn’t receive. He once was being prepared for surgery when a nurse proclaimed “he doesn’t need an epidural, he’s a paraplegic.” Jerry had to inform the nurse that he was only a partial paraplegic and that he would indeed need an epidural.

Jerry was in line at an Alabama court house to renew his parking permit and also renew his son’s registration. He watched a worker walk down the line and ask people “what do you need?” When she got to Jerry and saw his wheelchair, he was asked “who are you here with?” And Jerry finds it difficult to go to concerts and baseball games with a large family or friends gathering, because rarely are handicap-accessible tickets available for more than two people.

Jerry has seen a lot in over 35 years as someone living with a disability. He’s seen many of the barriers and attitudes towards people with disabilities persist. But he’s also seen many positive changes to get people with disabilities physically active through recreational opportunities such as golf, fishing and even snow-skiing. There are now organizations such as Lakeshore Foundation external icon – where Jerry works part-time coaching youth basketball and track – that provide recreational opportunities.

Jerry states: “I don’t expect the world to revolve around us. I will adapt – just make it so I can adapt.”

Justin’s Story

Justin was first diagnosed with a disability in the form of ADD (attention deficit disorder, now known as ADHD, or attention-deficit/hyperactivity disorder) at the age of 5 years. The diagnosis resulted in his removal from a regular classroom environment to special education courses. Justin’s parents were informed by Justin’s educators that he probably wouldn’t graduate high school, much less college.

Years later, as a young adult, Justin developed Meniere disease (an inner ear disorder), which affected his hearing and balance. The onset of the disorder left Justin with the scary reality that he could permanently lose his hearing at any time. Justin recalled a former supervisor taking advantage of this knowledge with an inappropriate prank: While speaking in a one-on-one meeting, the sound from the supervisor’s mouth abruptly halted, while his lips continued to move. Justin thought he had gone deaf – until the supervisor started laughing – which Justin could hear. Behaviors like the above took its toll on Justin’s confidence – yet, he knew he could contribute in society.

Spurred in part by adversity, Justin went back to school, earned a business degree, and shortly after, entered the commercial marketing industry. However, despite his education and experience, Justin was still regularly subject to the same stigma. Many of Justin’s work experiences over the course of his career left him feeling ashamed, guilty, offended, and sometimes, even intimidated. Rather than instilling confidence, it left him demoralized – simply because he was differently abled.

In July of 2013, everything changed for Justin. He joined the Centers for Disease Control and Prevention working as a contractor in the Division of Human Development and Disability at the National Center on Birth Defects and Developmental Disabilities. Justin’s colleagues put an emphasis on making him feel comfortable and respected as a member of a diverse and productive workforce. They welcomed Justin’s diversity, positively contributing to his overall health.

The mission of the Division of Human Development and Disability is to lead public health in preventing disease and promoting equity in health and development of children and adults with or at risk for disabilities. One in two adults with disabilities does not get enough aerobic physical activity 1 , and for Justin, regular physical activity is important to help him combat potentially lethal blood clots due to a genetic blood clotting disorder that he has. Every working hour, Justin walks for a few minutes, stretches, or uses his desk cycle. Justin also participates in walking meetings, which he believes leads to more creative and productive meetings.

Stories such as Justin’s are reminders that employment and health are connected. CDC is proud to support National Disability Employment Awareness Month every October. The awareness month aims to educate about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities.

Suhana’s Story

Suhana has a sister, Shahrine, who is older by 18 months. While Shahrine’s mother was pregnant with Suhana, their uncle came to town for a visit. During the visit, their uncle was quick to notice that Shahrine did not seem to be talking at an age appropriate level or respond when called upon. Shahrine would also turn up the volume on the television and radio when others could hear it without difficulty. Shahrine’s parents thought that her speech development and behavior were normal for a toddler, but thanks to the uncle expressing his concerns, the family soon took action. A hearing test found that Shahrine was hard of hearing.

Due to Shahrine’s diagnosis, Suhana received a hearing screening at birth and was found to be hard of hearing, as well. Had it not been for the concerns raised by the children’s uncle, not only would Shahrine’s hearing loss have possibly gone on longer without being detected, but Suhana would most likely not have had a hearing screening at birth.

As a result of their early diagnoses, Suhana and Shahrine’s parents were able to gain the knowledge they needed to make sure both of their children could reach their full potential in life. They had access to early services from a team of physicians, speech therapists, counselors, and teachers.

Suhana credits her parents for her own successes, saying that she couldn’t have made it as far as she has without their support and patience. Today, Suhana is employed at the Centers for Disease Control and Prevention (CDC) as an epidemiologist with the agency’s Early Hearing Detection and Intervention (EHDI) program. All children who are deaf or hard of hearing receive critical services they need as a result of the EHDI program, which funds the development of data systems and provides technical assistance to help improve screening, diagnosis and early intervention for these infants. When children who are deaf or hard of hearing receive services early, they are more likely to reach their full potential and live a healthy, productive adult life.

CDC is proud to support National Disability Employment Awareness Month every October. The goals of the awareness month are to educate the public about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities.

• Centers for Disease Control and Prevention. Vital Signs. [updated 2014 May 6; cited 2014 October 10] Available from: https://www.cdc.gov/vitalsigns/disabilities/

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Disability is not an obstacle to success. These inspirational leaders prove that

These leaders show that disability is no barrier to achieving incredible things Image:  REUTERS/Murad Sezer

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“Disability need not be an obstacle to success,” Stephen Hawking wrote in the first ever world disability report back in 2011. As one of the most influential scientists of modern times, the wheelchair-bound physicist is certainly proof of that.

So why then are public attitudes so far from the reality? Almost 40% of respondents in a survey in Britain said that disabled people aren’t as productive as others. In the same survey, a quarter of disabled people said people expected less of them because of their disability.

It is these sorts of attitudes, rather than any mental or physical impairment, that create barriers for people with disabilities. As these leaders from the world of sports, culture and business show, it’s about time we changed those outdated beliefs.

“I went blind at 22. From an athlete, I became a young man with a white cane, unsure how to live my life,” Mark Pollock, a Forum Young Global Leader explains. But very soon, he found a deeper purpose in life, and realized his disability didn’t have to stop him from achieving great things.

“I began to race in deserts, mountains, across oceans, and on the 10th anniversary of going blind, I raced over 43 days to the South Pole.”

But in 2010, an accident left him paralyzed, and once again his world changed overnight: “My new life was shattered.”

He had a choice: to let his disability define him for the rest of his life, or to continue fighting. There was only ever one way it was going to go.

“If I just sat in a wheelchair, I’d be giving up completely,” he remembers. Today, he’s working with other leaders from science, technology and communications to fund and fast-track a cure for paralysis.

Born in the US in 1880, an illness left Helen Keller both blind and deaf before her second birthday. While the services available to people with disabilities were less extensive than they are today, Keller’s mother sought out experts and ensured her daughter received the best education.

In 1904, Keller graduated from Radcliffe College, becoming the first deaf-blind person to earn a bachelor of arts. It was at university that her career as a writer and social activist started. Today, the Helen Keller archives contain almost 500 speeches and essays on topics as varied as birth control and Fascism in Europe.

She would go on to achieve international acclaim, becoming America’s first Goodwill Ambassador, and to this day she remains an inspiration to the deaf and blind .

Ralph Braun was still a young boy when he was diagnosed with muscular dystrophy, an incurable group of genetic diseases that leads to a loss of muscle mass.

A few years after his diagnosis, Ralph began to lose his ability to walk. While doctors warned him he would never be able to lead an independent life, the young boy was already proving people wrong, building the first battery-powered scooter. His passion would eventually lead him to establish wheelchair manufacturer BraunAbility.

He died in 2013, but as his company’s website notes, his legacy lives on. “Necessity is the mother of invention, and Ralph’s physical limitations only served to fuel his determination to live independently and prove to society that people with physical disabilities can participate fully and actively in life.”

Mexico’s most famous artist was born with spina bifida, a condition that can cause defects in the spinal cord. At six, she contracted polio, which left one leg much thinner than the other.

In spite of these challenges, she was an active child, but at 18 a bus accident left her with serious injuries. It was while recovering from the accident that Frida discovered her love of painting. She would go on to be one of the most famous Surrealists in the world.

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People With Disabilities in Society Essay

In today’s progressive society, people with disabilities are fortunate enough to have the same quality of life as people without disabilities. In the “Challenge” tab, I saw a video showing various photos of people with disabilities (Iris Center, 2021). These pictures leave a positive impression, as people look happy and content with their lives. I think that these people are powerful and inspiring, as they prove to the world that it is possible to live life to the fullest with a disability. The perception of such people, particularly children, by those around them plays a significant role in shaping their personality and their success in life. For example, if people treat a child with a disability as incapable of doing anything independently, he will grow up to be inhibited and unlikely to succeed. If he is treated as equal, he will develop a good self-image and achieve a lot in life.

If I had children with disabilities in my class, I would do everything I could to ensure they do not feel left out or restricted. If I were making a film about a blind person, I would focus on their forms of perception of reality, such as hearing, and touch. I would want to show that even though they perceive the world in a slightly different way, they are still an independent and versatile person. I would like to avoid the stereotype that blind people cannot take care of themselves or that if a person loses their sight, they lose their happiness in life. I want to show that disability is not a sentence but an opportunity to start valuing your life even more.

Iris Center (2021). What Do You See? Perceptions of Disability. Iris Center. Web.

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1. IvyPanda . "People With Disabilities in Society." October 26, 2022. https://ivypanda.com/essays/people-with-disabilities-in-society/.

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IvyPanda . "People With Disabilities in Society." October 26, 2022. https://ivypanda.com/essays/people-with-disabilities-in-society/.

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Roughly 15% of the world’s population, around 1 billion people, live with a disability. It can be a physical, developmental, emotional or a sensory impairment. Each condition requires its own special attention to fulfil the needs of the individual. Here are five things you should know about persons who live with a disability today.

1.  Independence is key

Persons who live with a disability should be able to make his or her own choices, enjoying the same freedoms and services as the rest of society. Failure to acknowledge each individual’s needs prevents them from fully enjoying their human rights and freedoms.  The Convention on the Rights of Persons with Disabilities (CRPD)  was adopted to protect these rights.

2.  COVID-19 has strongly impacted persons with disabilities

Persons who live with a disability are at a greater risk of contracting COVID-19. Many cannot afford or are denied healthcare. Persons with intellectual disabilities are also disproportionately affected by the socio-economic consequences of the health crisis. As the pandemic has disrupted many services, it is necessary to implement structural reforms.

3.  Women with disabilities are at a higher risk of discrimination

According to UN Women, one in five women live with a disability. They are more easily subject to discrimination and sexual violence, especially if they live with intersecting identities. All efforts for persons with disabilities must include a gender perspective to protect those at a higher risk of discrimination.

4.  Many countries lack funding and training to integrate technological advances

Information and communications technologies contribute to the education of persons with disabilities. Accessible technology also allows for full participation in society, subsequently diminishing stereotypes on disabilities. Countries need more targeted policy and funds to support the right to education of persons with disabilities.

5.  Persons with disabilities face restrictions in healthcare

Disability is often overlooked in the public health department. The lack of research and action, combined with lower incomes, often lead to difficulties for persons with disabilities in securing quality healthcare.

Stay updated on efforts to advance and protect the rights of persons with disabilities by following the  14th session of the Conference of States Parties  to the CRPD on 15-17 June 2021.  

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Essay On Disabled People

Disabled people are people who have mental or physical limitation so they depend on someone to support them in doing their daily life needs and jobs. Although disabled people are a minority and they are normally ignored, they are still a part of the society. The statistics show that the proportion of disabled people in the world rose from 10 percent in the seventies of the last century to 15 percent so far. The number of handicapped exceeds a billion people all over the world, occupied about 15 percent of the world's population, as a result of an aging population and the increase in chronic conditions such as diabetes, heart disease, blood and psychological diseases that are related with disabilities and impairments. Every five seconds someone …show more content…

And a disabled person’s ambition is like all other human beings, the looks of pity and compassion negatively affect that ambition. People should embrace the disabled person and give them a helping hand, and they should have laws, which defend their rights, which should be respected. However, most societies do not have laws that ensure an equal life for the disabled population. It is a shame that the rights of the disabled people has turned many times to mere slogans. As the statistics shown above say, disabled people are considered an embarrassment to be around and considered unproductive people, and therefore are excluded from their society. This group of people is socially excluded in many ways: 1) Excluded from leisure facilities Disabled people are usually deprived from their rights of having fun and spending their leisure time like normal people. Have you seen cinemas with special seats for paralyzed people for example? The answer would be no probably. Disabled people find it difficult to enter leisure facilities like swimming pools, bowling centers and cinemas, although with simple adjustments these places could be suitable for

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Cripple: A Rhetorical Analysis Of Nancy Mairs

When people hear handicap they think not able to care for themselves. Nancy wants to be known as a tough individual able to take care of herself. The reader can feel the agony of what Nancy is feeling. The tone of this passage is determination and agony. Nancy feels that cripple is more stronger word than “handicap” or ‘disabled.”

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n Nancy Mairs essay, “Disability”, she illustrates the lack of representation of people with disabilities in the media. While disability plays a major role in Mairs’ life, she points out the various ways her everyday life is ordinary and even mundane. Despite the normalcy of the lives of citizens with disabilities Mairs argues the media’s effacement of this population, is fear driven. She claims, “To depict disabled people in the ordinary activities of daily life is to admit that there is something ordinary about the disability itself, that it may enter anybody’s life” (Mairs 14). Able bodied people worry about the prospect of eventually becoming physically impaired.

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Reports online mentioned that 87% of people think that disabled people should be treated equally. The people who opposed this statement felt that the disabled use their disability as a free ride to an easy life. Most of my friends mentioned that their parents would object them to befriend those with disabilities as they feel that they would affect their well being and exam results . Albeit disappointed, I knew that it was an existing issue. I feel that being disabled is neither especially cursed nor especially blessed .

Argumentative Essay On Disabled People

Stella young is a disabled woman who gives a Ted talk on why she is not your inspiration. In this talk she mentions how disabled people as a whole are seen as making huge achievements and being an inspiration to others when they are just living their normal lives. Stella goes on to explain how when she was younger her community wanted to nominate her for an achievement award even though she had done nothing out of the ordinary, but just because she is in a wheelchair. It’s common to idolize images of men and women who are “beating the odds” and are doing things “despite” their disability, when in reality they are “using their body to the best of their ability” (Young, 2014) I agree with Stella’s argument here.

Persuasive Essay On Children With Disabilities

The family’s visions of a typical life for their children can come true. All parents want their children to be accepted by their peers, have friends and live “regular” lives. Inclusive settings can make this vision a reality for many children with disabilities. Children develop a positive understanding of themselves and others. When they attend classes that reflect the similarities and differences of people in the real world, they learn to appreciate diversity.

More about Essay On Disabled People

People with disabilities essay

Disability is one of the most important issues in the contemporary society because stigmatization of people with disabilities contributed to the formation of biases and prejudices which put them into the disadvantageous position compared to people, who did not have problems of disability. Such biases and prejudices contributed to the discrimination of people with disabilities which has been eliminated consistently since the emergence of the Civil Rights movement and introduction of legal changes, such as the Americans with Disabilities Act. Nevertheless, today, the problem of people with disabilities and their discrimination persists because many biases and prejudices are resilient. In this regard, education is particularly vulnerable to the problem of the integration of students with disabilities into the learning process since the modern education system attempts to provide equal opportunities for all students, eliminating the discrimination of students with disabilities. Moreover, the modern education system confronts another problem, the problem of students with excessive abilities, who also face problems with the integration into the classroom environment and development of positive relations with their peers. In such a way, the concept of disability/ability is fulcrum of the contemporary education system in relation to students interaction and elimination of discrimination of students based on abilities/disabilities.

Disability is the complex notion that involves limited opportunities and special needs of people but it does not mean the inferiority of individuals compared to those, who do not have disability. At the same time, ability is a set of skills, knowledge and opportunities to exercise them to perform specific tasks. In such a situation, the risk of the widening gap between individuals with disabilities and those, who do not have them because disability can limit opportunities for individuals to exercise their knowledge, skills and opportunities to the full extent, while those, who do not have disabilities, can take the full advantage of their skills, knowledge and opportunities (Kudlick, 2005). In this regard, the attitude of the social environment to people with disabilities may be crucial for their social standing and opportunities to stand on the equal ground for others.

One of the major challenges people with disabilities face is the challenge in their professional training and development. Disability may limit learning abilities of individuals that prevent them from obtaining the target education and making a successful career. For example, many students with learning disabilities, such as ASD, have difficulties with learning that prevent them from successful learning. In such a situation, they cannot complete their education just like other students do, while the lack of education limits their career opportunities consistently. On the other hand, many researchers (Mansell, 2003) point out that students with disabilities may be as successful as other students, while some students may be even more successful than the average student in certain subjects.

In such a situation, disability may be a substantial obstacle on the way to the professional development of individuals and to their career. On the other hand, often it is not the disability proper but the prejudice of employers that becomes an obstacle on the way of people with disabilities. However, such discrimination tends to disappear due to legal changes, including the introduction of the Americans with Disabilities Act, and current policies aiming at the inclusion of disabled people. In this regard, the discrimination of people with disabilities persists because the power of prejudices and biases is very strong.

At the same time, educators should be aware of special needs of students with disabilities. They should understand that students with disabilities are no different from other students but they have special needs, which educators should match to help them to succeed in their learning and reach a considerable academic progress just like other students do. In fact, students with disabilities are not inferior compared to their peers but they just have special needs. For example, some researchers (Mansell, 2003) admit that even children with serious mental disabilities may be integrated in the learning process successfully on the condition of meeting needs of those students but the problem is that educators are not trained to work with such students. This is why they have difficulties while working with students with disabilities and the integration of students into the learning process and into their peer groups becomes quite difficult.

On the other hand, the modern education focuses on such issues as Knowledge, Enquiry, Empathy, Pluralism, Social Commitment to prevent the problem of discrimination of students with disabilities and to set educators free from their biases and prejudices in relation to students with disabilities. Knowledge is essential for educators to understand needs of students with disabilities. The enquiry is essential for the research of latest advancements in the field of education and exploration of the problem of disability. The empathy is essential for educators to treat students with disabilities, which educators should treat on the equal ground compared to other students. The pluralism is essential for educators to develop the personalized approach to each students, regardless of their abilities and disabilities. The social commitment is essential for educators to treat students with disabilities as an integral part of the school community. The social commitment means that educators should serve to interests of the community and help students with disabilities to integrate into their communities and help communities to accept children with disabilities as equal community members.

At the same time, there is another issue related to abilities, which often remains unnoticed by educators and researchers, which is the issue of excessive abilities. What is meant here is the fact that some students are gifted in certain fields, which make them different from other students and, to a certain extent, put them in the position similar to the position of students with disabilities (Enns, 2013). Excessive abilities lead to the focus of students on the specific subject, which is particularly interesting for them and where they are particularly successful. For example, gifted students may be successful in math that will put them in quite a challenging position. On the one hand, conventional math classes will be boring for them because instructions educators provide for other students may be not even necessary for gifted students, who understand those instructions perfectly and know more than other students, while their math skills may match standards which are normally attributed to higher grades. As a result, such students feel bored with the classroom environment and the learning process because math classes are not interesting for them because they do not contribute to their progress that discourages them from paying much attention to their math class. This trend can be traced in relation to other subjects, which gifted students may be particularly strong in.

On the other hand, gifted students may have difficulties with developing positive interpersonal relations with their peers. In fact, peers may feel the difference of gifted students because of their excessive abilities that may lead to the development of the sense of inferiority-superiority in relationships between the average and gifted students. In addition, gifted students may stay too focused on their favorite subjects or particular interests that also prevent them from developing positive interpersonal relations with other students. In such a way, students with excessive abilities have difficulties with building up positive interpersonal relationships with other students just like students with disabilities.

Thus, the concept of ability/disability turns out to be pivotal for the modern education system and society at large because it influences consistently the development of students and position of individuals with disabilities and excessive abilities. In this regard, disability and excessive ability are two extremes which may raise problems in the personal and professional development of individuals because they face the risk of the development of poor interpersonal relations with their peers. At the same time, both students with disabilities and excessive abilities need the integration into their classroom environment and development of positive interpersonal relationships with their peers.

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The Importance Of Discrimination Of People With Disabilities

Show More Human rights are important to all human beings regardless of nationality, race region, or gender. We are all equally entitled to our human rights without discrimination. These rights are enforced by governmental laws. People with intellectual or developmental disabilities have the same legal rights as others. Throughout the world people with disabilities are denied their rights to be included in a wide-range of services from education to health care. Many people with disabilities are often forgotten and is put away in institution because they cannot function in society. The support of family, government, and private organization are design to help accommodate people with disabilities. Many people with disabilities cheers of the day when …show more content… Discrimination occurs when someone believes they are treated wrongly or less favorably than another person in the equivalent or parallel situation. Discrimination of people with disabilities are often overlooked and little or no progress is being made to determine whether sources are available for all disable people. (Morris) Discrimination can be direct or indirect, and usually takes the appearance of segregation or elimination from something. Disability means a physical or mental impairment that substantially limits one or more major life activities (The Americans with Disabilities Act of 1990 ). Although they are permitted to every human right, people with disabilities frequently face serious discrimination centered on opinions, insights, misunderstandings, and lack of knowledge. People with disabilities may undergo unfair treatment because their appearance. People with disabilities have the right to equal gratification of socio-economic rights. Persons with disabilities may have psychological, intellectual or sensory impairments. Many people may have multiple forms of which make it difficult to perform daily task. The challenged of government officials to engage in political and economic development for disability …show more content… In December of 2006, the United Nations General Assembly passed the Convention on the Rights of Persons with Disabilities or CRPD. On May 3, 2008 CRPD came into force and is one of the nine rights treaties of the United Nation (Articles of the UN Convention). A key movement for the Convention is altering the insight of disability and guarantee that organizations recognize that all people must be afforded with the opportunities to live life to their fullest potential. The Convention on the Rights of Persons with Disabilities propose adequate guidelines of protection for the public, social, financial, and civil rights of persons with disabilities on the basis of equality and non-discrimination. It makes evident that persons with disabilities are permitted to live independently in their neighborhoods with making choices that will affect their lives. The purpose of the convention is to support, shelter and ensure the full and equal gratification of all human rights by person with disabilities. It protects a number of vital areas such health care and training. The Convention forms a Committee on the Rights of Persons with Disabilities which will monitor its implementation. The Committee can accept and examine complaints filed by individuals, and where there is evidence of grave and systemic violations of human rights, it can launch inquiries. The Convention and its Optional

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Health Inc.

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For patients with disabilities, this doctor prioritizes independence — and fun

Dan Gorenstein

Leslie Walker

Kevin Carlson, with nurse Joshua Lee (right) and respiratory therapist Eric Mathewson (left), watches a WWE match on October 2, 2023 in San Jose, Calif. Gabriel Torres hide caption

Kevin Carlson, with nurse Joshua Lee (right) and respiratory therapist Eric Mathewson (left), watches a WWE match on October 2, 2023 in San Jose, Calif.

From his seat in the stands, Kevin Carlson's eyes lock on a giant of a man straddling the top rope of the ring.

Carlson, a self-described WWE wrestling junkie who has cerebral palsy, boos the reviled wrestler along with the other 15,000 fans who pack the arena in downtown San Jose, Calif.

As the 62-year-old watches the giant fly across the ring landing on top of his opponent, a respiratory therapist suctions Carlson's lungs, and a nurse checks his catheter.

Carlson is here because his health care team snagged a row of wheelchair-accessible tickets, packed up extra ventilator batteries and oxygen tanks, and shuffled staffing schedules to free up three workers to accompany Carlson for the night.

Holistic health care like this is rare among the country's 2 million adults with developmental and intellectual disabilities.

Carlson's doctor, Clarissa Kripke , says this is what it looks like when health care "does better" by people with disabilities; it takes money, effort and, importantly, the conviction that sometimes physical health takes a second seat to joy. Kripke's goal is to provide care that extends beyond medical transactions.

Investigations

A hospital is suing to move a quadriplegic 18-year-old to a nursing home. she says no.

"Health care is about helping people to participate fully in their lives," Kripke said, "not just about curing disease."

A promise of 'less restrictive living' for people with disabilities

Twenty-five years ago this June, the Supreme Court's landmark Olmstead v. L.C. ruling slammed the door on a dark era in U.S. history: decades of states institutionalizing hundreds of thousands of people with disabilities like autism, Down syndrome and cerebral palsy.

Justice Ruth Bader Ginsburg wrote in the majority opinion that locking people away had denied them "the pleasure of ... less restrictive living."

Kevin Carlson enjoys the wrestling match in San Jose with a nurse and respiratory therapist. Gabriel Torres hide caption

Kevin Carlson enjoys the wrestling match in San Jose with a nurse and respiratory therapist.

Since then, the number of people in large, state-run facilities has plummeted from nearly 200,000 in the 1960s to below 20,000 today. People with Down syndrome now live close to 60 years on average, compared to just 26 years in 1950.

But according to the 30 sources Tradeoffs spoke to, the freedom to live fuller and healthier lives remains elusive for many.

One key culprit is the U.S. health care system. The evidence suggests that the patchwork of doctors, hospitals and insurers that has replaced institutions as people's go-to source for care is falling short, limiting people's independence and harming their health.

Patients too frequently meet doctors and nurses who are untrained and uncomfortable caring for them; struggle to enter inaccessible exam rooms; and encounter insurers who deny their requests for essential equipment.

A limited but troubling body of research captures this system's shortcomings, showing that these patients are less likely to get preventive care such as dental exams and mammograms , and are more likely to take avoidable trips to the emergency room.

"People with intellectual disabilities need to be treated and respected the same way that we do every other patient who shows up at the doctor," said University of Chicago public health researcher Harold Pollack. "We are a long way from that."

Kripke, a family physician and University of California, San Francisco professor, has devoted her career to blowing up the obstacles patients with disabilities face.

Over the last two decades, in collaboration with partners like the advocacy organization, The Arc San Francisco and the Health Plan of San Mateo , a county-run health insurer, Kripke has gradually reshaped care for adults with complex disabilities in the San Francisco Bay Area.

The doctor has turned the traditional primary care model inside out. She's ditched the typical rushed, 15-minute visits in cramped exam rooms, and instead heads out to the small group homes where her patients live.

House calls, said Kripke, allow her to ask questions like, "How do you want to spend your day? Where do you want to go? What do you want to do?"

Dr. Clarissa Kripke making a house call to the group home where Kevin Carlson lives. Kripke focuses on holistic care to give people with intellectual developmental disabilities the best quality of life possible. Leslie Walker/Tradeoffs hide caption

House calls and 'hidden work'

Kripke has developed a unique way to deliver care, particularly for those with complex medical needs.

She relies on staff in group homes — she calls them her eyes and ears — to monitor people's health and their progress on personal goals, like taking more outings or gaining life skills.

It's a level of attention that requires follow up and follow through, or what the doctor calls "hidden work" — coordinating with specialists or appealing insurance denials. Kripke estimates that for every hour of direct patient care, she spends another six on these other tasks — roughly triple what doctors caring for other types of patients spend.

Rather than billing for every test she runs or call that she makes, Kripke charges each patient's insurer or group home a flat monthly fee. She caps her patient-list at 100 people — less than 10% of the lengthy roster a typical primary care doctor manages.

Kripke's approach has paid off for Carlson. During a visit to his five-person group home in Redwood City last fall, Carlson said proudly that his weight had climbed from a dangerously-low 70 pounds to 111 since Kripke took over his care. Staff also slashed through insurer red tape to secure Carlson, a naturally gregarious guy, a speaking valve that helps him communicate while on his ventilator.

It's unclear if Kripke's model reduces spending; her program has yet to be studied. But perhaps the clearest sign it's a good deal: Group homes choose to pay her fee when, instead, their residents could get treated at local clinics for free.

Potentially, the longer Kripke keeps the most medically complex patients living in the community, rather than an institution, the bigger the payoff. Carlson's group home, for example, costs Medicaid and the state of California roughly $27,000 a month, whereas an intensive nursing facility — runs closer to $34,000 .

When problems land people like Carlson in the hospital, as his kidney stones sometimes can, Kripke keeps a close eye on her patients' care there, too, and believes that helps them get home sooner and in better shape. That, theoretically, could save taxpayer-funded programs like Medicaid and Medicare money.

More training and a better pay structure could spread the model

Kripke estimates some 50 other doctors in the country are honing innovative models to deliver high-quality care to this population. She, herself, has trained thousands of caregivers, advocates and providers.

Yet, it will be difficult for approaches like hers to spread more widely without more training for frontline clinicians. The workforce lacks both specialists for people with the most complex conditions and primary care providers with the insight to respectfully treat patients with disabilities.

"It's as hard today for adults with developmental disabilities to find attentive, loving, expert care as it was in the early 2000's when I was starting out," Kripke said.

A recent national survey of physicians found just 4 in 10 felt "very confident" in their ability to provide the same quality of care to patients with a disability as those without one. Only about 15% of U.S. medical schools have joined a national initiative to bolster training.

Without more pay, many clinicians may be reluctant to invest the extra time and training to do this work. A bipartisan House bill introduced in 2023 — the so-called HEADs UP Act — would boost certain payments for providers serving this population.

Ari Ne'eman , who served on the National Council on Disability during the Obama administration, said scaling work like Kripke's requires both insurers and providers to make big shifts.

"We really need additional training," he said, "And we need to ensure that [pay is] aligned with the amount of time it takes physicians to provide competent and accessible care to people with disabilities."

New federal rules signal hope

Kripke's approach is focused on caring for adults with the most medical needs — a small slice of the broader disability community. New and forthcoming federal regulations aim to improve care and inch closer to delivering more independence for all U.S. adults with developmental disabilities.

Starting last year, group homes began facing closer scrutiny over the amount of privacy and autonomy they offer residents, for example, locking their bedroom doors or setting their own schedules.

Federal officials expect to finalize rules this spring that target discriminatory policies like relying on the inaccessible medical equipment that still litters America's hospitals or putting people with disabilities at the end of the organ transplant line.

"It is critical that people be able to get in the door and that people be able to get on the table," said Alison Barkoff, who leads the Administration for Community Living at the U.S. Department of Health and Human Services. "The lack of accessibility has been a huge barrier to preventative health care."

People with disabilities can spend months — even years — wading through webs of approvals to get critical care, like more help at home or a new wheelchair. A regulation finalized this year to take effect in 2026 requires Medicaid and private Medicare insurance plans to make faster, more transparent decisions about whether they will cover these services.

'There's a waitlist for everything'

Better health care is one piece, advocates say, in their decades-long fight to help people with disabilities live more independently. What's also required is an expansion of a wide range of services, from housing to help preparing meals.

"There's a waitlist for everything when you have a disability," said Melissa Crisp-Cooper, who has cerebral palsy and works for The Arc San Francisco .

A lack of paid health aides who help people shower, shop and get to work have led to fewer options. "Because of low wages and a lack of respect," said Barkoff, "we are at a point where the vast majority of providers are turning down referrals and even closing services ."

Between 200,000 and 700,000 people are waiting for at least one service they need to live in the community, and some data suggest Black and Hispanic people are hardest hit.

Some family members of people with disabilities — and even doctors — frustrated by these resource constraints insist that a return to larger, institution-like settings is necessary.

"That's just not true," said Kripke.

Over her 20-year-career, she's seen enough proof that people can thrive outside of big institutions — even patients with the most complex needs, like wrestling fanatic Kevin Carlson.

"People didn't know that could be done before," said the doctor, but now that they do, the onus is on policymakers — and the health care system — to make living freer and fuller a reality for all.

This story comes from the health policy podcast Tradeoffs . Dan Gorenstein is Tradeoffs' executive editor, and Leslie Walker is a senior reporter/producer for the show, where a version of this story first appeared. Sign up for Tradeoffs' weekly newsletter to get more health policy reporting in your inbox.

• cerebral palsy
• intellectual disabilities