Disability News Weekly Roundup – Monday, May 16 to Friday, May 20

Aquí puede leer este artículo en español.

Rehabilitation:
This nonspeaking teenager wrote an incredibly profound letter explaining autism (The Washington Post)
For the first 14 and a half years of Gordy’s life, his parents had no reason to think their son could comprehend anything they said: He had never spoken, and he could not really emote. They worried aloud about his future, not filtering what they said, because they did not think he understood. But Gordy was absorbing everything. “My brain, which is much like yours, knows what it wants and how to make that clear,” he wrote in a letter sent this month to an organization holding an Autism Night Out event. “My body, which is much like a drunken, almost six-foot toddler, resists.” Gordy learned to express himself through the Rapid Prompting Method, taught to him by one of his therapists, which involves answering questions by pointing to letters on an alphabet board. Gordy’s letter appears in its entirety at the end of the article.

Research:
Colors of autism spectrum described by researchers (Science Daily)
Researchers at the CanChild Centre for Childhood Disability Research at Canada’s McMaster University have developed an autism classification system that defines levels of social communications ability among children with autism spectrum disorder (ASD). The new system, called the Autism Classification System of Functioning: Social Communication, or ACSF:SC, provides a standardized and simplified way for clinicians, therapists, teachers, and parents to talk about a child’s social communication abilities, from the standpoint of what the child can do rather than what he or she cannot. According to one scientist with CanChild, “This is not a test, but more like describing the colors of a rainbow.”

Social media poses threat to people with intellectual disabilities (Science Daily)
A study co-authored by scholars at Michigan State University and Britain’s Durham University finds that adults with Williams syndrome – who can be extremely social and trusting – use Facebook and other social networking sites frequently and are especially vulnerable to online victimization. Roughly a third of study participants said they would send their photo to an unknown person, arrange to go to the home of a person they met online, and keep online relationships from their parents. A 2013 study led by the MSU researcher found that people with Williams syndrome, autism, and Down syndrome experienced extremely high rates of real-world teasing and bullying, theft, and abuse. The current study is the first to investigate the online risk of victimization for adults with Williams syndrome.

Sports:
Seattle to host 2018 Special Olympics (Disability Scoop)
Seattle will host the next Special Olympics USA Games in July 2018. According to Washington’s Governor Jay Inslee, planning is already underway for the roughly one-week competition. The Special Olympics USA Games are held every four years; the most recent were in New Jersey in 2014. Since 1968, when Chicago hosted the first International Special Olympics, the competitions have become widely celebrated as part of the largest global movement to empower people with intellectual disabilities. The 2018 event will mark the games’ 50th year.

Technology:
Movement-based video games designed for kids with disabilities (Rehab Management)
A group of computer scientists have developed three movement-based computer games resulting from sessions working with children using wheelchairs. The games are a downhill skiing game called Speed Slope, a robot boxing game called Rumble Robots, and an experienced adventure game called Rainbow Journey. The games work with any type of wheelchair and use wheelchair movements to control game play. For example, left and right wheelchair movement translates to slaloming in the skiing game, and forward and backward movement changes the pace.

New control technology to improve prosthetic arm movement (MedGadget)
Researchers at Simon Fraser University in British Columbia, Canada are working on improving the movement of an already highly advanced robotic prosthetic arm. The bebionic arm from RSLSteeper has five independent fingers, but the researchers are trying to improve the interface and how it is controlled to make it feel more like a real arm. The M.A.S.S. Impact (Muscle Activity Sensor Strip) team at SFU has developed a stick-on electrode device that measures the electrical activity within the remaining muscles around the stump. These are recorded by the electrode array and converted by novel software developed at the SFU lab, which uses techniques that improve its performance as the arm is used more and more. The article includes a video showing the technology in use.

Smart earplugs help tinnitus sufferers sleep (The Hearing Review)
Hush Smart Earplugs are a new form of sleep wearable that helps people with tinnitus (“ringing in the ear”) by combining noise isolation in the form of earplugs with access to 15 different soothing soundtracks to block out disturbing noises via a smartphone app. The earplugs are designed to block out 70 decibels of noise through the combination of two proven methods and replace it with sounds such as white noise, rain, waterfall, or forest sounds. The product can also be used by people who are disturbed by snoring spouses, those in loud residential areas, or those who need to sleep during frequent travel.

Resumen Semanal de las Noticias sobre la Discapacidad: Lunes, 16 de Mayo  – Viernes, 20 de Mayo

Rehabilitación:
Este adolescente que no habla escribió una carta muy profunda que explica el autismo (The Washington Post)
Por los primeros 14 años y medio de la vida de Gordy, sus padres tenían ninguna razón para pensar que su hijo podía comprender nada de lo que dijeron. Nunca había hablado, y no podía realmente emocionarse. Se preocupaban en voz alta sobre su futuro, no filtrando lo que dijeron, porque no pensaban que él entiende. Pero Gordy estaba absorbiendo todo. “Mi cerebro, que es muy similar al suyo, sabe lo que quiere y cómo hacerlo claro,” el escribió en una carta enviada a una organización que posee un evento Noche Hacia Fuera para el Autismo. “Mi cuerpo, que es muy parecido a un niño borracho, casi seis pies, resiste.” Gordy aprendió a expresarse a través del Método Provocación Rápida, que le enseño uno de sus terapeutas, que consiste en responder a las preguntas señalando a las letras en una tabla alfabética. La carta de Gordy aparece en su totalidad al fin del artículo.

Investigación:
Los colores del espectro autista se describen por los investigadores (Science Daily)
Los investigadores en el Centro CanChild para la Investigación de Discapacidad en la Niñez en la Universidad de McMaster en Canadá han desarrollado un sistema de clasificación de autismo que define los niveles de la habilidad de comunicaciones sociales entre los niños con trastorno del espectro autista (TEA). El nuevo sistema, llamado el Sistema de Clasificación de Autismo de Funcionamiento: Comunicación Social, o ACSF:SC por sus siglas en inglés, proporciona una manera estándar y simplificada de hablar de las habilidades de comunicaciones sociales para los médicos, terapeutas, maestros, y padres, desde el punto de vista de lo que el niño puede hacer más que lo que él o ella no puede hacer. De acuerdo con un científico con CanChild, “Esto no es una prueba, sino más bien como la descripción de colores de un arco iris.”

Los medios sociales de comunicación plantean amenaza para las personas con discapacidad intelectual (Science Daily)
Un estudio co-autorizado por los eruditos de la Universidad Estatal de Michigan y la Universidad Durham del Reino Unido encuentra que los adultos con síndrome de Williams – que pueden ser extremadamente sociales y tener mucha confianza en otras personas – utilizan Facebook y otros sitios de redes sociales con frecuencia y son especialmente vulnerables a la victimización en línea. Aproximadamente un tercio de los participantes del estudio dijeron que enviarían su foto a una persona desconocida, arreglar a ir a la casa de una persona que conocieron en línea, y mantener lejos de sus padres las relaciones en línea. Un estudio de 2013 dirigido por el investigador de MSU encontró que las personas con síndrome de Williams, autismo, y síndrome de Down experimentaron tasas extremadamente altas de las burlas y la intimidación, el robo, y el abuso del mundo real. El estudio actual es el primero en investigar el riesgo en línea de victimización para los adultos con síndrome de Williams.

Deportes:
Seattle será sede de los Juegos Olímpicos Especiales de 2018 (Disability Scoop)
Seattle será sede a los próximos Juegos Olímpicos Especiales EEUU en julio 2018. De acuerdo con el gobernador Jay Inslee, la planificación ya está en marcha para la competencia de casi una semana. Los Juegos Olímpicos Especiales EEUU se celebran cada cuatro años; los más recientes se celebraron en Nueva Jersey en 2014. Desde 1968, cuando Chicago fue sede de los primeros Juegos Olímpicos Especiales, las competiciones se han vuelto ampliamente celebrados como parte del movimiento mundial más grande para empoderar personas con discapacidades intelectuales.

Tecnología:
Juegos de vídeo basados en el movimiento diseñados para niños con discapacidades (Rehab Management)
Un grupo de científicos de computación han desarrollado tres juegos de computadora basados en el movimiento que resultan de sesiones trabajando con niños que usan sillas de ruedas. Los juegos son un juego de esquí alpino de velocidad llamado “Speed Slope”, un juego de boxeo con robot llamado “Rumble Robots”, y un juego de aventura con experiencia llamado “Rainbow Journey”. Los juegos trabajan con cualquier tipo de silla de ruedas y utilizan los movimientos de la silla de rueda para controlar el juego. Por ejemplo, el movimiento de la silla de ruedas a la izquierda y derecha se traduce en slalom en el juego de esquí, y los movimientos hacia adelante y hacia atrás cambian el ritmo.

Nueva tecnología de control para mejorar el movimiento del brazo prostético (MedGadget)
Los investigadores en la Universidad de Simon Fraser en Columbia Británica, Canadá están trabajando para mejorar el movimiento de un brazo prostético robótico ya muy avanzado. El brazo bebiónico de RSLSteeper tiene cinco dedos independientes, pero los investigadores están tratando de mejorar la interfaz y como se controla para que se sienta más como un brazo real. El equipo de Impacto M.A.S.S. (Gaza de Sensor de Actividad Muscular) de SFU ha desarrollado un dispositivo de electrodos adhesivo que mide la actividad eléctrica dentro de los músculos restantes del muñón. Estos son grabados por el conjunto de electrodos y se convierten en el nuevo software desarrollado en el laboratorio de SFU, que utiliza técnicas que mejoran su rendimiento como el brazo se utiliza cada vez más. El artículo incluye un vídeo que muestra la tecnología en uso.

Tapones inteligentes para los oídos ayudan a pacientes de tinnitus a dormir (The Hearing Review)
“Hush Smart Earplugs” son una nueva forma de sueño portátil que ayuda a las personas con tinnitus (“zumbido en el oído”) mediante la combinación de aislamiento de ruido en la forma de tapones para los oídos con acceso a 15 diferentes bandas sonoras calmantes para bloquear los molestos ruidos a través de un app de teléfono inteligente. Los tapones para los oídos están diseñados para bloquear el ruido de 70 decibelios a través de una combinación de dos métodos probados y reemplazarlo con sonidos como el ruido blanco, lluvia, cascada, o sonidos del bosque. El producto se pude usar por personas que están perturbados por ronquidos cónyuges, los de las zonas residenciales con sonidos fuertes, o los que necesitan dormir durante los viajes frecuentes.

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Aging Well Means Taking Care of Your (Mental) Health

May is both Older Americans Month and Mental Health Month. Aging well means more than just taking care of your body, eating right, and exercising. Aging well also includes taking care of your mental health. The National Coalition on Mental Health and Aging and the National Council for Behavioral Health are sponsoring a Twitter chat on May 18th at 2pm to bring awareness to the issue of aging and mental health, including addressing substance abuse and elder abuse. We’ve gathered some resources from the NIDILRR community to add to the very comprehensive list offered by NCMHA in support of these two important observances.

We’ll be sharing these and other resources on May 18th as part of the #BH365 Twitter chat. See you there!

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May is Arthritis Awareness Month!

May is Arthritis Awareness Month.  According to the Centers for Disease Control and Prevention (CDC), arthritis affects one in five adults and 1 in every 250 children the United States.  The CDC, Arthritis Foundation, and other organizations are partnering to observe arthritis awareness with this year’s theme, #SeeArthritis.  The goal is to increase awareness about arthritis – as it is often perceived as a disease that affects older adults, and for the most part is an invisible disability.

The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) has funded numerous projects related to arthritis over the years, and our collection includes more than 170 citations from these and other NIDILRR-funded projects.  REHABDATA contains abstracts of over 1,000 documents related to arthritis from the NIDILRR community and elsewhere.  Here are a few specialized searches:

Check out organizations in our Ready Reference related to arthritis/auto immune disorders!

Learn more about arthritis at https://naricspotlight.wordpress.com/2016/05/16/what-is-arthritis.

 

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What is arthritis?

Arthritis refers to joint pain or joint disease and can affect people of all races, genders, and ages. It may be caused by inflammation, which affects the tissue lining of the joints. Inflammation may include swelling, redness, heat, and pain and severe damage of the joints may occur in some types of arthritis. According to the Arthritis Foundation, there are over 100 different types of arthritis and related conditions. Here, we will discuss the most common types.

Osteoarthritis, rheumatoid arthritis, and gout are three of the most common types of arthritis. Rheumatoid arthritis occurs when the body’s immune system is not working properly. It affects the joints and bones, but it may also affect the internal organs and systems. Osteoarthritis usually comes with age and most often affects the hips, knees, and fingers. At times, it follows an injury to a joint, such as a fall, car accident, or sports injury. Gout, another common form of arthritis, is caused by the formation of crystals in the affected joint. Although the big toe is usually affected, other joints may be affected as well.

The signs and symptoms of arthritis may include pain in your joints, fever, weight loss, rashes, and itchiness. You may have trouble moving. However, these symptoms may be part of another illness. It is very important that you speak with your doctor. He or she will be able to tell you if you have arthritis or a related condition after meeting with you and running diagnostic tests. These tests may include X-rays, bloodwork, and MRIs.

Once your doctor diagnoses the type of arthritis or related condition, he or she should discuss treatment options with you. Treatment for arthritis may include medications to treat the pain, stiffness, and inflammation. Your doctor may also suggest gentle stretching exercises, walking, ice packs, and resting the joint. Some people with arthritis may benefit from hip replacement surgery.

The following organizations provide great information on arthritis, related resources, and research:

To learn more about NIDILRR funded arthritis research, check out this post on our Spotlight Blog. Please contact our information specialists if you would like to learn more.

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¿Qué es la artritis?

La artritis se refiere a dolor en las articulaciones o enfermedad de las articulaciones y puede afectar a personas de todas las razas, géneros, y edades. Puede ser causada por inflamación, lo que afecta el forro del tejido de las articulaciones. La inflamación puede incluir hinchazón, enrojecimiento, calor, y dolor y daño severo de las articulaciones puede ocurrir en algunos tipos de artritis. De acuerdo con la Fundación de Artritis, hay más de 100 tipos de artritis y condiciones relacionadas. Aquí, vamos a discutir los tipos más comunes.

La osteoartritis, la artritis reumatoide, y gout son tres de los tipos más comunes de artritis. La artritis reumatoide ocurre cuando el sistema inmunológico del cuerpo no está funcionando correctamente. Afecta a las articulaciones y los huesos, pero también puede afectar a los órganos y sistemas internos. La osteoartritis por lo general viene con la edad y afecta más frecuentemente a las caderas, las rodillas, y los dedos. A veces, viene después de la lesión de una articulación, como una caída, accidente de tráfico, o lesiones deportivas. Gout, otra forma común de artritis, se causa por la formación de cristales en la articulación afectada. Aunque el dedo gordo del pie suele ser afectado, otras articulaciones pueden ser afectadas también.

Los signos y síntomas de artritis pueden incluir dolor en sus articulaciones, fiebre, pérdida de peso, erupciones, y picazón. Es posible que tenga problemas para moverse. Sin embargo, estos síntomas pueden ser parte de otra enfermedad. Es muy importante que hable con su médico. Él o ella será capaz de decirle si usted tiene artritis o una condición relacionada después de reunirse con usted y la ejecución de pruebas de diagnóstico. Estas pruebas pueden incluir radiografías, análisis de sangre, y resonancias magnéticas.

Una vez que su médico le diagnostica el tipo de artritis o condición relacionada, él o ella debe discutir las opciones de tratamiento con usted. El tratamiento de artritis puede incluir medicamentos para tratar el dolor, la rigidez, y la inflamación. El médico también puede recomendar ejercicios de estiramiento suaves, caminar, bolsas de hielo, y tener la articulación en reposo. Algunas personas con artritis pueden beneficiarse de la cirugía de reemplazo de cadera.

Las siguientes organizaciones proporcionan una gran información sobre la artritis, los recursos relacionados, y la investigación:

Para obtener más información acerca de la investigación sobre la artritis financiada por NIDILRR, eche un vistazo a este post (en inglés) en nuestro blog Spotlight. Por favor, póngase en contacto con nuestros especialistas en información si le gustaría aprender más.

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Disability News Weekly Roundup – Monday, May 9 to Friday, May 13

Aquí puede leer este artículo en español.
Human Interest:
Born without hands, girl wins national handwriting contest (Disability Scoop)
Anaya Ellick’s penmanship is so good, she recently won a national handwriting contest. That’s impressive for any seven-year-old, but even more so because Anya has no hands, and she uses no prosthetics for help. Balancing a pencil between her arms, near her wrists, she weaves it across the page, producing perfectly neat letters. Anaya’s honor is given by Zaner-Bloser, which produces educational materials and gives awards to kindergartners through eighth-graders in a variety of categories. Anaya’s art skills are also beyond first-grade level, and she enjoys learning about everything from rocks to minerals to space exploration, so a job as a scientist or astronaut might be in her future.

Chef with Down syndrome opens food truck (Disability Scoop)
The newest food truck in Fort Worth, Texas is the creation of Austin Underwood, who has Down syndrome. Called Austin’s Underdawgs, the rolling restaurant will serve hot dogs with inventive toppings such as “dawg sauce,” a raspberry chipotle barbecue-flavored concoction. Underwood first announced he wanted to work as a chef while attending a vocational college for students with special needs. Instructors trained him to work as a prep chef in the school’s cafeteria, and by the second semester, he was running the stir-fry station. To prepare for his new venture, Underwood spent two days learning the ins and outs of frankfurters at Vienna Beef’s Hot Dog University in Chicago. So far, the crowd favorite has been The Straw Dog, a frankfurter with dawg sauce, bacon bits, and crispy onion straws, served on a toasted bun.

Rehabilitation:
Learning to walk in my 60s (The New York Times)
Jacques Leslie has walked with a limp since he recovered from polio as a 4-year-old. The disease shortened his right leg, partially atrophied his calf muscle, limited his ankle flexibility, and curled his foot inward. By the time he reached adulthood, he more or less forgot about his limp. Then, at the age of 67, he consulted a physical therapist for an unrelated problem. She told him his limp was probably unnecessary; in becoming accustomed to limping as a child, he had sacrificed the tone of healthy muscles that supported walking. If he reawakened them, he would have enough muscle to achieve a normal stride. Over the next year and a half, the therapist assigned him exercises that gradually strengthened his muscles and flattened his foot. Today he walks without a limp.

Things I’ve learned from hearing loss (Huffington Post)
Over the past few years, the author of the article has developed significant bilateral hearing loss, hyperacusis (sensitivity to loud noises), and tinnitus (a “ringing in the ears”). During this transition to understanding everyone around him, struggling to piece together context clues, and attempts at lip reading, he has learned a few things: (1) People do not like to repeat themselves, and often do not care to accommodate the listener by, for instance, standing in front of him when speaking. (2) People always want to fix him, saying things like “I can’t wait until you get hearing aids so I can stop shouting at you.” (3) He has started taking lessons in American Sign Language, and (4) he has reached out to the Deaf community and is proud to have something in common with the amazing people he is meeting there.

Technology:
World’s first consumer 3D-printed wheelchair set to launch in London (Gizmag)
Layer Design has adopted 3D printing as a manufacturing method for its GO wheelchair. The chair is the result of research conducted with wheelchair users as well as medical professionals. The finished product is designed to help people stop seeing wheelchairs as medical devices, by presenting them as vehicles to improve lives. The chair is built to fit the needs of various users with different disabilities, its key components being two custom-made pieces, the seat and the foot rest, which are built to accurately fit the user’s body shape, weight, and disability. The seat is printed from a semi-transparent resin combined with thermoplastic polyurethane. The geometry of the foot rest, which is constructed from titanium, is built to fit the user’s leg length, sitting position, and foot shape, and features an anti-slip finish.

Thought-reading headset lets users speak their mind (Gizmag)
By combining a wireless connected EEG headset and an assistive communication app, Smartstones is bringing the power of speech to people who have difficulty communicating verbally. The “think to speak” technology works by reading the brainwaves of the user and expressing them as phrases spoken through an app called :prose. The app helps nonverbal people communicate by tapping or swiping on a mobile device. Like sign language, individual gestures and movements are linked to words and phrases. The app recognizes the input and speaks aloud the words related to the gestures. Using the Emotiv Epoc or Insight headset in conjunction with the :prose app, a user can simply think about the motions tied to each command, and the headset reads their brainwaves, transmits the signal to the app via Bluetooth, and speaks the related phrase aloud.

Live Braille aims to help the visually challenged move about independently (Gadgets 360)
Live Braille is wearable technology that can help people who are visually challenged to move about more freely. The Live Braille Mini is a plastic device that can be worn like a ring, and it has two ultrasonic rangefinders that are used in tandem to detect how far an obstacle is and what direction it is in, among other functions. Users point the device in the directions they are walking in, and the sensors check if the path is clear and vibrate if there is an obstacle in the way. The haptic feedback provided by the sensors is so precise, there are 17 different types of vibrations, with different feedback for close-range and long-range objects. The article includes a video showing Live Braille in use.

Resumen Semanal de las Noticias sobre la Discapacidad: Lunes, 9 de Mayo  – Viernes, 13 de Mayo

Interés humano:
Nacida sin manos, una chica gana el concurso nacional de escritura de mano (Disability Scoop)
La caligrafía de Anaya Ellick es tan buena, que recientemente ganó un concurso nacional de escritura de mano. Eso es impresionante para cualquier niño de siete años de edad, pero más aún porque Anaya no tiene manos, y ella no utiliza prótesis en busca de ayuda. Ella equilibra un lápiz entre sus brazos, cerca de sus muñecas, ella lo teje a través de la página, produciendo letras perfectamente ordenadas. El honor de Anaya es dado por Zaner-Bloser, que produce materiales educativos y da premios a los niños de kindergarten hasta el octavo grado en una variedad de categorías. Las habilidades del arte de Anaya también son más allá del nivel del primer grado, y ella disfruta aprender acerca de todo, desde las rocas de minerales a la exploración espacial, por lo que un trabajo como científico o un astronauta podrían estar en su futuro.

Chef con síndrome de Down abre un camión de alimentos (Disability Scoop)
El último camión de comida en Fort Worth, Texas es la creación de Austin Underwood, que tiene síndrome de Down. Llamado Los Underdawgs de Austin, el restaurante rodando servirá perros calientes con ingredientes inventivos como “salsa de Dawg”, una frambuesa chipotle barbacoa brebaje con sabor. Underwood anunció por primera vez que quería trabajar como chef mientras que asistía un colegio vocacional para estudiantes con necesidades especiales. Los instructores lo entrenaron para trabajar como un chef de preparación en la cafetería de la escuela, y en el segundo semestre, estaba trabajando la estación sofrito. Para prepararse para su nueva empresa, Underwood pasó dos días aprendiendo los entresijos de salchichas en la Universidad Hot Dog de Vienna Beef en Chicago. Hasta el momento, el favorito del público ha sido el Perro de Paja, una salchicha de Fráncfort con salsa de Dawg, trocitos de tocinos, y pajas de cebolla crujientes, servido en un pan tostado.

Rehabilitación:
Aprender a caminar en mi década 60 (The New York Times)
Jacques Leslie ha caminado con una cojera desde que se recuperó de polio cuando tenía 4 años de edad. La enfermedad cortó su pierna derecha, atrofiando parcialmente su músculo de la pantorrilla, limitando la flexibilidad de su tobillo, y frunció el pie hacia adentro. En el momento que llego a la edad adulta, más o menos se olvidó de su cojera. Luego, a la edad de 67 años, consultó a un fisioterapeuta para un problema no relacionado. Ella le dijo que su cojera probablemente era innecesaria; en acostumbrarse a cojear como un niño, había sacrificado el tono de los músculos que apoyaban caminar. Si les volvió a despertar, tendría suficiente músculo para lograr una marcha normal. Durante el próximo año y medio, el terapeuta le asignó ejercicios que fortalecieron gradualmente sus músculos y aplanaron el pie. Hoy camina sin cojear.

Cosas que he aprendido de la pérdida de audición (Huffington Post)
En los últimos años, el autor del artículo ha desarrollado una pérdida lateral significativa de la audición, hiperacusia (sensibilidad a los ruidos fuertes), y el tinnitus (un “zumbido en los oídos”). Durante esta transición para comprender  de todos a su alrededor, tratando de juntar todas las pistas de contexto, y tratando de leer los labios, estaba aprendiendo un par de cosas: (1) A la gente no le gusta repetirse, y con frecuencia no les importa dar cabida al oyente, por ejemplo, estar delante de él al hablar. (2) La gente siempre quiere arreglarlo, diciendo cosas como: “No puedo esperar hasta que tengas audífonos para que pueda dejar de gritar a ti.” (3) Ha comenzado a tomar lecciones de lenguaje de señas estadounidense, y (4) se ha acercado a la comunidad sorda y se enorgullece de tener algo en común con la gente maravillosa que está cumpliendo allí.

Tecnología:
La primera silla de ruedas del mundo impresa en 3D para el consumidor se lanzará en Londres (Gizmag)
“Layer Design” ha adoptado la impresión en 3D como un método de fabricación para su silla de ruedas GO. La silla es el resultado de investigación llevada a cabo con usuarios de sillas de ruedas, así como los profesionales de la medicina. El producto final está diseñado para ayudar a las personas a dejar de ver las sillas de ruedas como dispositivos médicos, presentándolos como vehículos para mejorar las vidas. La silla de rueda está diseñada para adaptarse a las necesidades de varios usuarios con diferentes discapacidades, sus componentes clave son dos piezas hechas a medida, el asiento y el reposapiés, que se construyen para ajustarse con precisión a la forma del cuerpo, el peso, y la discapacidad. El asiento se imprime a partir de una resina semi-transparente combinada con poliuretano temoplástico. La geometría del reposapiés, que es construido de titanio, está construido para adaptarse a la longitud de la pierna del usuario, la posición en que se sienta, y la forma del pie, y cuenta con un acabado antideslizante.

Auricular de lectura de pensamiento permite a los usuarios expresar sus opiniones (Gizmag)
Mediante la combinación de un auricular inalámbrico conectado de EEG y un app de comunicación asistida, “Smartstone” está trayendo el poder del habla a personas que tienen dificultad para comunicarse verbalmente. La tecnología de “pensar para hablar” funciona mediante la lectura de las ondas cerebrales del usuario y expresándolas como frases habladas a través de un app llamado :prose. El app ayuda a las personas no verbales a comunicarse con un toque o deslizando un dispositivo móvil. Al igual que el lenguaje de signos, los gestos y movimientos individuales están vinculados a las palabras y frases. El app reconoce la entrada y habla en voz alta las palabras relacionadas con los gestos. Usando los auriculares de Emotiv Epoc o Insight en conjunto con el app :prose, un usuario puede simplemente pensar en los movimientos vinculados a cada comando, y el auricular lee sus ondas cerebrales, transmite la señal al app a través de Bluetooth, y habla la frase relacionada a voz alta.

Vivo Braille tiene como objetivo ayudar a las personas con discapacidades visuales a moverse de manera más autónoma (Gadgets 360)
Vivo Braille es una tecnología portátil que puede ayudar a las personas con impedimentos visuales a moverse con mayor libertad. El Vivo Braille Mini es un dispositivo de plástico que se puede usar como un anillo, y tiene dos telémetros ultrasónicos que se usan en conjunto para detectar en qué medida es un obstáculo y en qué dirección se encuentra, entre otras funciones. Los usuarios señalan el dispositivo en las direcciones que están caminando, y los sensores chequean si el camino está claro y vibran si hay un obstáculo en el camino. El “feedback” háptico proporcionado por los sensores es tan preciso, hay 17 diferentes tipos de vibraciones, con feedback diferente para los objetos de corto alcance y largo alcance. El artículo incluye un vídeo que muestra Vivo Braille en uso.

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National Council on Disability and Christopher & Dana Reeve Foundation partner on the Parenting with a Disability Toolkit!

The National Council on Disability (NCD) and the Christopher & Dana Reeve Foundation have partnered to create the Parenting with a Disability Toolkit!  NCD and the Reeve Foundation released the “toolkit” at the White House Forum on the Civil Rights of Parents with Disabilities on May 5th, 2016.  The toolkit provides a summary of laws that protect families’ rights and contains information on various topics including adoption, custody, visitation, family law, and the child welfare system among others.  This toolkit builds upon NCD’s 2012 report, Rocking the Cradle:  Ensuring the Rights of Parents with Disabilities and Their Children.  Ella Callow JD, Legal Program Director of the NIDILRR-funded National Center for Parents with Disabilities and their Families at Through the Looking Glass, participated in the development of the original report.  An enhanced version of the report and the new toolkit (including a plain language version) are available at http://www.ncd.gov/publications/2012/Sep272012

The Forum on Civil Rights of Parents with Disabilities, which included the toolkit release, panels on various topics related to parenting with a disability, and the strategy session on implementing recommendations from the  2012 report, may be viewed at https://www.whitehouse.gov/photos-and-video/video/2016/05/05/forum-civil-rights-parents-disabilities or downloaded for mp4 or mp3.

Interested in resources related to parenting and disability?  Check out documents that are available in our collection and projects related to parenting with a disability.

About the National Council on Disability and Reeve Foundation:

The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other Federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.  Originally established as a small advisory Council within the US Department of Education (under Rehabilitation Act of 1973 & amended by Workforce Innovation and Opportunity Act of 2014), NCD became an independent agency in 1984 and has played a leading role in the enactment of first version of the Americans with Disabilities Act (ADA) in 1988 and has played in active role since the enactment of the ADA in 1990 in analyzing the needs of people with disabilities, crafting policy solutions, and being a trusted advisor to the executive and legislative branches in collaboration with people with disabilities.

The Christopher & Dana Reeve Foundation began from the grassroots movement by the Stifel Paralysis Research Foundation and the American Paralysis Association (APA).  After his spinal cord injury in 1995, Christopher Reeve reached out to the APA for assistance and was also working on his own foundation.  By 1999, the APA and Christopher’s foundation came together to form the Christopher Reeve Foundation with Dana’s name added to its moniker after her untimely death in 2006.  The Reeve Foundation and its Paralysis Resource Center (PRC) provides information on living with paralysis for individuals and their caregivers, conducts research, offers supports, and provides opportunities to get involved as a peer mentor and as an advocate for change.

 

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Celebrating Fibromyalgia Awareness Day! Your Voice Matters!

May 12th is Fibromyalgia Awareness Day.  This year’s theme is “Your Voice Matters.”  Fibromyalgia  (FM) also known as fibromyalgia syndrome, fibromyositis, and fibrositis, is one of the most common chronic pain conditions.  The disorder affects an estimated 10 million people in the US and an estimated 3 to 6 percent of the world populationWhile it occurs most often in women, it strikes men and children, and all ethnic backgrounds. For those with severe symptoms, FM can be extremely debilitating and interfere with basic daily activities.

FM is a complex pain disorder characterized by chronic widespread musculoskeletal aches, pain, and stiffness; multiple soft tissue tender points; abnormal pain processing; general fatigue and sleep disturbances; and psychological symptoms such as depression or anxiety.  Many people with FM also experience additional symptoms such as chronic fatigue, headaches, irritable bowel syndrome, irritable bladder, cognitive and memory problems (often called “fibro fog”), temporomandibular joint disorder, pelvic pain, restless leg syndrome, and sensitivity to noise and temperature. These symptoms can vary in intensity and, like the pain of FM, wax and wane over time. There is no cure for FM at this time.  Symptoms can be treated with medication; non-drug treatments; and complementary/alternative therapies such as aquatic therapy, Tai Chi, yoga, massage, myofascial release, acupressure, and acupuncture.

Massage Magazine recently posted and article, 5 Benefits of Massage for Fibromyalgia Patients.  The article provides and overview on FM symptoms and the various types of massage that may be of benefit to FM patients (i.e. myofascial release, Swedish, and shiatsu).  The article lists the benefits of therapeutic massage for FM as:

  1. Relaxation to improve sleep.  By improving the quality of sleep this allows the body to repair and rejuvenate more effectively.
  2. Improved muscle tonicity.  By aiding lethargic muscles this aids in restoring strength and vitality to the body.
  3. Improved mental clarity.  As the body is more relaxed this can raise healthy awareness and relieve mental stress improving the individual’s cognitive issues.
  4. Headache relief.  Massage improves blood flow to the brain that may relieve the physical source of a headache placing the individual’s mind into a healthier space.
  5. Diminishing the effects of anxiety and/or depression.  Massage restores homeostasis to the body thereby diminishing and/or improving hormonal fluctuations, issues with appetite, and chronic flight-or-flight mode.

The National Center for Complementary and Alternative Medicine has also reported that certain types of massage have been shown to be beneficial for people with fibromyalgia. Anyone with FM or similar conditions should speak with their primary care provider before trying this or any other complementary or alternative therapy.

For more information on Fibromyalgia Awareness Day and planned events/activities please visit http://tinyurl.com/gw9v28y.  For more information and a resource guide to creating your local FM Awareness Event:   NFMCPA Guide to Creating Local Fibromyalgia Awareness Events.

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NIDILRR Seeking Public Comment on Proposed Transportation Priority

Transportation is central to living independently, but nearly a third of people with disabilities do not have adequate access.

Current research has shown potential benefits of robotics and automation for independent travel and mobility for people with disabilities. Fully autonomous vehicles are expected to dramatically improve mobility and research and development of this exciting idea is underway in both the public and private sector.  Even less dramatic technology is expected to have a tremendous impact.

NIDILRR proposes to fund research to advance the development of robotics and automation that enhance accessible transportation for travelers with disabilities by:

  1. a) Meeting the diverse needs of travelers with mobility, vision, hearing and cognitive disabilities; and
  2. b)  Providing travelers with the ability to plan and execute on-demand trips at any time and from any location.

The first project to be funded under this priority is entitled: Robotics and Automation Technology Application Development Supporting Independent Mobility.

NIDILRR and ACL invite you to submit comments regarding this proposed priority.  Comments must be sent to Marlene Spencer, at Marlene.Spencer@acl.hhs.gov and include the phrase “Proposed Priority for Transportation DRRP” in the subject line of your electronic message. Comments must be submitted on or before May 20, 2016.

Read the full priority and learn more about learn more about National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) here.

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Right Resources, Right Now

If you’ve followed our Spotlight Blog, you may have noticed our Right Resources, Right Now collection of posts. These articles target a topic and provide links to material developed by the NIDILRR community, as well as other community partners, that can be downloaded, printed, watched, or otherwise put to use by your organization immediately. We often highlight material that can be used for observances like Older Americans Month (which is now) or Mental Health Month (also now). These resources can include:

  • Training materials, guides, or program curricula
  • Webcasts, instructional videos, and forum discussions
  • Articles, eBooks, newsletters, and plain-language summaries of new research
  • Assistive technology, programs, and apps

As you’re planning your organizational activities, check in with us and see what this community has to offer! Look for the Categories drop menu on the right side of this screen and select Right Resources, Right Now!*

*If you’re attending the Alliance of Information and Referral Systems (AIRS) conference, look for our presentation on Wednesday morning to learn more about what the NIDILRR community has to offer and how to stay up-to-date on the newest resources.

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