#COVID19 Resources from the NIDILRR Grantee Community

Posted on April 3, 2020 by

Updated December 4, 2020.

Many members of the NIDILRR grantee community have responded to the coronavirus pandemic (COVID-19) by publishing, presenting, or curating resources to support the continued independence and participation of people with disabilities and their families, and the professionals who work with them. We are actively collecting these resources as they are published. This list is growing every week, so check back regularly. New items are posted first; older items are listed alphabetically by project or center, and the date of the most recent update will be posted above

NEW Workplace Accommodation Expert Support System (Work ACCESS).

This center has published several factsheets, available through the Tools for Life wiki, on accommodation problems and solutions associated with telework and reopening/return-to-work, as well as a telework platform accessibility matrix. This center also hosted a webinar on the accessibility of telework platforms, also available through the Tools for Life wiki.

NEW Rehabilitation Research and Training Center for Place-Based Solutions for Rural Community Participation, Health, and Employment (RTC: Rural)

America at a glance: Early fears realized as COVID-10 surges in rural counties uses map data to explore the growing strain on healthcare in rural communities that have a disproportionate share of those living with disability, advanced age, and health complications, and those living in congregate settings. Unemployment among people with disabilities during COVID-19 explores trends in unemployment for people with disabilities before and during the ongoing recession. While temporary unemployment has gone down for some, it may be becoming permanent for others.
Keywords: Employment, healthcare, rural communities

NEW Mid-Atlantic ADA Regional Center

The Impact of COVID-19 on Corrections and Law Enforcement: A Roundtable Discussion, Webinar December 7th, 2 – 3:30 pm ET. The panelists will discuss the impact of the COVID-19 pandemic on logistics and operations in the realm of law enforcement, corrections, and the Americans with Disabilities Act (ADA). The panelists will also discuss how they have been engaged in coordinating their respective agencies’ responses to COVID-19.  Registration is free and required. Continuing education recognition will be available for a fee.
Keywords: ADA, law enforcement

NEW Southeast ADA Regional Center

Disability in a COVID World: Employment, Communications, Physical Spaces & Mental Health, Webinar December 3rd, 12 – 1 pm ET. The international panel of presenters will discuss disability during the COVID-19 pandemic with a focus on employment, communications, physical spaces, and mental health. The presenters will also discuss the International Day of Persons with Disabilities. Registration is free and required.
Keywords: Employment, mental health, communications, international

NEW Rehabilitation Research and Training Center on Employment and Physical Disabilities

Getting Back to Work After COVID-19: Lingering Symptoms Present Challenges for Employers and the ADA. The article discusses the impact of COVID-19 on employees and employers, including challenges related to the Americans with Disabilities Act (ADA) and the possibility of significant increase in accommodation requests. Among the challenges are post-COVID syndrome, a collection of lingering symptoms such as fatigue and brain fog, which may prompt employees who had the virus to request accommodations. In addition, people at higher risk for adverse outcomes from the virus may request accommodations as companies reopen their workplaces.
Keywords: Employment, accommodations, return to work

ADA National Network of Regional Centers

The ADA National Network and its 10 regional centers help people with disabilities, employers, and public entities to understand their rights and responsibilities under the Americans with Disabilities Act (ADA). The regional centers are operating, though their physical offices may be closed due to stay-at-home orders. Call 800/949-4232 to reach the center for your region. The National Network and the centers host a Twitter chat (4/22) on ADA, Healthcare, and Effective Communication. Some of the centers have published resource pages.
Keywords: ADA, accessibility, healthcare, barriers, civil rights, effective communication, rural health, telehealth, mental health

Americans with Disabilities Act Participation Action Research Consortium (ADA PARC)

People with Disabilities in COVID-19: Fixing Our Priorities. Published in the American Journal of Bioethics specially issue on COVID-19. From the introduction: “While the COVID-19 pandemic has wreaked disproportionate havoc in marginalized racial/ethnic communities, little attention has been given to people with disabilities in the press, public health surveillance, and research. A few articles, including this special issue, consider the discriminatory nature of categorical exclusion from and guidelines for the rationing of medical equipment and services. While important, this focus captures only one—late-stage—injustice toward people with disabilities in the pandemic, and leaves untouched other important periods. We focus on these understudied periods. First, we describe the most relevant and unique disadvantages that people with disabilities experience in health care and community living that place them at greater risk for disparate COVID-19 outcomes. Then we highlight the need to ensure accurate data collection in order to better understand COVID-19 disparities and improve prevention and treatment of, and preparedness for, current and future infectious disease pandemics among people with disabilities.”
Keywords: Ethics, disparities, data collection

Boston-Harvard Burn Injury Model System Center (BH-BIMS)

The researchers at the BH-BIMS published a letter to the editor in the journal Burns, COVID-19 pandemic and the burn survivor community: A call for action. The letter to the editor highlights the impact of the coronavirus pandemic (COVID-19) on people with burn injury, including reduced access to inpatient and outpatient medical and therapeutic care, loss of peer support leading to increased isolation, and triggers for post-traumatic stress disorder. The authors also suggest resources for support and education for burn survivors and care providers. The article is available free in full text.

The Center for Enhancing Neurocognitive Health, Abilities, Networks, & Community Engagement (ENHANCE).

The goal of the ENHANCE project is to support the ability of older adults with cognitive disabilities to live independently in the community. This center has published an article, When Going Digital Becomes a Necessity: Ensuring Older Adults’ Needs for Information, Services, and Social Inclusion During COVID-19, in the Journal of Aging & Social Policy. The article examines the immediate need for digital literacy for older adults who must suddenly learn to interact with health care providers, social services, and friends and family.

Center for Research, Training, and Dissemination of Family Support for People with Disabilities Across the Life Course.

This center conducted a survey of caregivers and non-caregivers to understand the impact of the pandemic. The survey found that family caregivers reported more negative effects from the pandemic than non-caregivers. They were more likely to be experiencing isolation, food insecurity, and financial hardship, among other issues. Family caregivers also reported that the pandemic had increased their caregiving responsibilities, and that providing care was more emotionally, physically, and economically difficult. Female caregivers, minority caregivers, caregivers with less education, caregivers with lower income, younger caregivers, caregivers who care for persons with mental health/behavioral issues, and caregivers who live with the care recipient tended to report greater negative impacts. The report is available in an executive summary, a full report, and an infographic.
Keywords: Caregiving, family caregivers, social isolation, financial impact

Collaborative on Health Reform and Independent Living (CHRIL)

CHRIL and its stakeholder partner American Association on Health and Disability (AAHD) collaborated on a series of short videos on COVID-19 and Disability:

  1. COVID-19 & Disability: Who’s at Risk for Complications?
  2. COVID-19 & Disability: Social Distancing
  3. COVID-19 & Disability: Precautions for People in Wheelchairs
  4. COVID-19 & Disability: Keeping Wheelchairs Clean
  5. COVID 19 & Disability: Being a Self-Advocate
  6. COVID-19 & Disability: Knowing Your Legal Rights

Cognitopia

Cognitopia has developed several NIDILRR-funded technology solutions for people with cognitive and processing disorders such as brain injury and autism. Cognitopia added a collection of COVID-19 resources to the Staying Healthy portfolio in My Life. It’s designed to provide cognitively accessible information related to the coronavirus, including reliable links, instructional videos, personal care routines, and collected other info to help folks get through a difficult time. Cognitopia’s MyLife tool can be used remotely by a student and their support team as they transition from school to college or work. See a set-up example using Jon Student and his transition goals and activities.
Keywords: Cognitive disabilities, community participation, personal care

Community Life Engagement Guidepost Fidelity Scale Development and Testing

Virtual Community Life Engagement. This publication applies the Four Guideposts to Community Life Engagement to selecting and supporting online engagement opportunities for people with intellectual and developmental disabilities: https://covid19.communityinclusion.org/pdf/CLE_issue10_V2_D2.pdf This publication was supported in part by a NIDILRR Field Initiated Research Grant (Community Life Engagement Guidepost Fidelity Scale Development and Testing; # 90IFRE0025) Part of https://covid19.communityinclusion.org/
Keywords: Community living, intellectual and developmental disabilities

Community Living Policy Center

This center conducts research in policies and practices that promote community living outcomes for individuals with disabilities. In response to pending legislation which could impact services and supports for people with disabilities, the center published two briefs: Understanding the Home and Community-Based Services COVID-19 Response Proposal describes bills to increase funding for states’ home and community-based services, specifically how the increased funding would help ensure care at home, minimize wait lists, increase wages for health workers, and provide for sick leave; An Emergency Direct Care Conservation Corps Proposal proposes ways to strengthen the direct care workforce to reduce the spread of COVID-10 and preventable emergency department visits and hospitalization of vulnerable people.
Keywords: Home and Community-Based Services (HCBS), direct support providers, policy, legislation

Langston University Rehabilitation Research and Training Center (LU-RRTC)

The LU-RRTC has released a Policy Research Brief (volume 3, issue 1) titled Forecasting COVID-19 Issues for People of Color with Disabilities While Advancing the Minority-Serving Institution Research Capacity Building Science: A Framework for Federal Agencies. The brief reports on key themes derived from a national listening session titled “Emerging Issues Around COVID-19 and People of Color with Disabilities for Minority-Serving Institution Scientific Workforce Capacity Building”. The report documents potentially useful actionable strategies and proposes a Framework for Advancing the COVID-19 Science Involving People of Color with Disabilities through Minority-Serving Institution Research Capacity Building. 
Keywords: Capacity building

Model Systems Knowledge Translation Center (MSKTC)

MSKTC works with the Spinal Cord Injury, Traumatic Brain Injury, and Burn Injury Model System Centers, developing and curating resources to help people with these injuries, their families and caregivers, and rehabilitation professionals. In this special issue of their monthly newsletter, MSKTC shares resources to help individuals stay healthy during the coronavirus/COVID-19 pandemic.
Keywords: Spinal cord injury, traumatic brain injury, burn injury, health and wellness

Mount Sinai Spinal Cord Injury Model System

This center conducts research and development to help people with spinal cord injury (SCI) recover and return to their communities. Principal Investigator Thomas Bryce, MD, answered Frequently Asked Questions about COVID-19 and SCI for United Spinal. Topics covered included risk of contracting the virus, the impact on respiratory function, and when to consider going to the emergency department.
Keywords: Spinal cord injury, risk factors

National Research Center on Parents with Disabilities and Their Families

This center conducts research and training to support parents with disabilities, help them understand their rights and advocate for services and supports. The Center hosted a Twitter chat Parenting with a Disability During COVID-19:Insights from the #COVIDDisParenting Twitter Chat, where parents with disabilities shared their helpful strategies for staying healthy, active, and engaged; unique concerns and experiences; preparedness and unmet needs; and more. This center also hosts a parenting blog and is accepting articles from parents with disabilities about their COVID-19 experiences (participation closes May 15).

NRCPD also collected blog entries from parents with disabilities about their experiences during the various phases of the pandemic in their communities.
Keywords: Parents with disabilities, parenting

Northern New Jersey Spinal Cord Injury System Center (NNJSCIS)

This center conducts research in interventions in rehabilitation and supports for people with spinal cord injury (SCI). In the COVID-19 and Spinal Cord Injury: Minimizing Risks for Complications podcast NNJSICS director Trevor Dyson-Hudson, MD and Carolann Murphy discuss some of the risks for people with SCI who may have reduced lung and cough function due to paralysis, and techniques and devices they can use to improve their cough. They also discuss the challenges of limiting social or physical contact when working with a personal care attendant, when a personal care attendant is unavailable, and keeping wheelchair contact surfaces clean and disinfected.
Keywords: Spinal cord injury, risk factors, respiratory health, personal care attendants

Rehabilitation Engineering Research Center: Develop and Evaluate Rehabilitation Technology and Methods for Individuals with Low Vision, Blindness, and Multiple Disabilities

This RERC conducts research and development in technology solutions to current barriers to opportunity faced by individuals who are blind, have low vision, and have multiple disabilities. This includes barriers to careers in science, technology, engineering, and mathematics (STEM). The team created an accessible pandemic bulletin, A11y COVID-19, to display data on infection rates that is accessible to screen readers and can be “sonified” on demand. The browser plays a different tone for each level on the graph, rising as the data indicates higher numbers.

Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (RERC-AAC)

This center conducts research and development in AAC, technology that helps people who cannot communicate verbally because of neuromuscular disorders, autism, and other conditions. A recent article from the RERC highlights the need for effective communication to help these individuals understand what is happening and express their needs, wants, and important care details. The article describes how to prepare in advance for someone with complex communication needs, how to support understanding of COVID-19 for whose who may have difficulty understanding complex communication, ways to support expressive communications for someone who cannot rely on speech, and suggestions for healthcare workers providing care for someone who cannot communicate.
Keywords: Accessibility, communication, augmentative and alternative communication

Rehabilitation Engineering Research Center on Improving the Accessibility, Usability, and Performance of Technology for Individuals who are Deaf or Hard of Hearing

The researchers at this RERC assembled three guides to respond to communication issues that have emerged during this crisis: virtual meetings (now ubiquitous for working while under stay-at-home orders) need to be accessible for employees who are Deaf or hard of hearing, and hospital staff need to communicate with patients with hearing loss.
Keywords: assistive technology, inclusion, hearing, workplace accommodations, telework, medical facilities

Rehabilitation Research and Training Center for Learning and Working During the Transition to Adulthood (Transitions ACR).

This center focuses on young people with mental health conditions as they transition from school to college and/or the workplace. COVID-19 Resources for Youth and Young Adults features curated content from including news stories from around the country, a Google Spreadsheet with hundreds of resources for youth, young adults, families, college, educators, and supporters; webinars on methods to support college students with mental health conditions who have been affected by disruptions in school; and selections from Transitions ACR publications and products which may be of help to students, administrators, and counselors.
Keywords: Psychiatric disabilities, youth, young adults, transition, college

Rehabilitation Research and Training Center for Pathways to Positive Futures

Telehealth for Transition Age Youth and Young Adults: Privacy, Emotional Safety and Welfare During Covid-19 and Beyond (PDF) provides initial guidance for protecting the emotional safety, privacy and welfare of transition-age youth and young adults while they are participating in virtual mental health care. This list, compiled via consultation with youth peer support specialists, clinicians, and supervisors who work with young people, is intended as a starting point as services evolve to meet the challenges of this new era. This center also hosted a webinar, Supporting Youth Peers during COVID-19.
Keywords: Youth, young adults, mental. health, peer counselors

Rehabilitation Research and Training Center for Place-Based Solutions for Rural Community Participation, Employment, and Health (RTC: Rural)

This center conducts research and training activities that address the unique needs of people with disabilities living in rural communities. The staff is assembling resources to inform people living in these communities about the virus in general, ways to connect with services, and more.
Keywords: Rural, remote services, vocational rehabilitation, geography, economics

Rehabilitation Research and Training Center on Community Living and Participation for People with Serious Mental Illness

This center focuses on how people with serious mental illness engage with their community, from family leisure to creating welcoming workplaces and community spaces.
Keywords: Psychiatric disabilities, community participation, social isolation

  • Keeping Connected while Staying Apart includes a running list of resources to stay connected and engaged, the powerpoint from A National Conversation on Community Participation (3/26) and links to ideas for staying engaged (virtual theater, online class communities, art and learning programs).
  • Resources for Remote Community Participation (PDF) includes an extensive list of high-tech, low-tech, and no-tech ways to stay connected.
  • ConnectionsRx, a new program providing one-to-one support for individuals to identify interests AND the opportunity to connect to meaningful activities through a support group on Facebook. 
  • Fall 2020 Back to Campus Planning Guide for College Students with Mental Health Conditions provides helpful tips for college students with mental health conditions, including considerations for remote, in-person, and hybrid learning formats. The guide also covers self-advocacy planning and campus engagement planning strategies that will help students maintain their academic success and well-being as a college student in 2020.

Rehabilitation Research and Training Center on Employment of Individuals with Blindness and Other Visual Impairments

Staff from this center led a recent forum discussion on remote training in vocational rehabilitation, through the Older Individuals Who are Blind – Technical Assistance Center (OIB-TAC). Since most training for people with visual impairment occurs face-to-face, many professionals are searching for new procedures to offer training during quarantines and physical distancing. Sylvia Stinson-Perez and Kendra Farrow, both Certified Vision Rehabilitation Therapists, facilitated discussions on working remotely, providing services and training in a remote environment, and identifying helpful resources.
Keywords: Blindness, visual impairments, employment, remote training, vocational rehabilitation

Rehabilitation Research and Training Center on Employment of People with Intellectual and Developmental Disabilities

This center focuses on the practices and policies that support successful employment of people with intellectual and developmental disabilities (I/DD), including autism spectrum disorder (ASD). The center has set up a collection of videos for families and professionals supporting individuals with ASD. How to: Teaching Handwashing explains how to cover hand hygiene, learning styles and challenges to consider, and examples of teaching strategies. How to: Handwashing for Individuals with ASD demonstrates hand hygiene in simple, straightforward language and images.
Keywords: Intellectual and developmental disabilities, autism, videos, personal hygiene

Rehabilitation Research and Training Center on Employment for People with Physical Disabilities

Accommodations & Return to Work Amidst the COVID-19 Pandemic provides strategies to support the physical and mental health of a company’s workforce during the pandemic. This includes how to ensure the safety and accessibility of the workplace and ways to accommodate teams in remote work environments.
Keywords: Employment, workplace accommodations, return to work

Rehabilitation Research and Training Center on Employment Policy and Measurement (EP-RRTC)

The EP-RRTC hosts monthly discussions on the state of employment of Americans with disabilities as reported in the Bureau of Labor Statistics Jobs Report, along with related disability employment issues. In response to the pandemic, the EP-RRTC hosts monthly National Trends in Disability Employment (nTIDE) Special Reports – Implications of COVID-19, where a team of experts share their latest perspectives, based on data from a population survey released mid-month, on the coronavirus pandemic and its implications on employment, emerging bills and policies, and resources for the days ahead. The discussion are archived for future viewing.

Rehabilitation Research and Training Center on Family Support

This RRTC is conducting a survey about issues related to COVID-19 and its impact on families supporting members with disabilities. The survey covers impacts on employment, financial well-being, social interactions, health behaviors, physical health, and mental health.  It also asks whether anyone in the household has been diagnosed with COVID-19 or are experiencing related symptoms. If you are providing unpaid care to a loved one because of an illness, disability, or functional problem, you will also be asked detailed questions about how COVID-19 has affected your caregiving duties and ability to provide quality care.  These answers will also be extremely helpful in designing programs to help caregivers during this difficult time.  Your responses will inform professionals and policy makers who are designing programs and interventions to help people cope with this serious public health crisis. 

Rehabilitation Research and Training Center on Integrated Healthcare and Self-Directed Recovery

This center creates, modifies, and improves self-directed models of medical care and mental health services that promote recovery, health, and employment for people with psychiatric disabilities. Managing Your Wellness During the COVID-19 Outbreak offers a collection of wellness self-management strategies and resources. Learn how to manage stress, cope with anxiety, combat loneliness, or explore virtual distractions with art, music, museum tours, and more. The collection also includes resources for physical health and wellness, supports for behavioral health providers and other support personnel, and resources to help children, teens, and young adults cope during the outbreak. This center has published a Self-Management Education and Support Referral Algorithm, designed to help primary care providers follow guidelines recommended by the Institute of Medicine to choose a self-management program to meet their patients’ needs at different stages of emotional distress. The algorithm identifies what kinds of knowledge patients need, the self-management programs that provide it, and how to locate these programs in their local communities. Modeled on the American Diabetes Association’s patient education algorithm, the algorithm features peer-delivered self-management programs because of their strong evidence-base and successful use in managing mental health conditions.
Keywords: Psychiatric disabilities, health and wellness, telehealth

University of Alabama at Birmingham Spinal Cord Injury Model System Center (UAB-SCIMS)

UAB-SCIMS conducts research that supports people with SCI, their families, and the rehabilitation professionals who support them. The video Tips for People with SCI During COVID-19 offers tips for individuals to maintain their health and daily living from UAB-SCIMS psychologists. Tips include keeping an eye on secondary conditions to avoid the need for hospital visits, maintaining a routine, getting exercise, and maintaining social contact.

UABSCIMS had dedicated the 2020 issue of their Pushin’ On newsletter to COVID-19. This issue features an article on staying healthy to avoid the impact of the virus, as well as articles on technology for independence and opportunities to participate in research.
Keywords: Spinal cord injury, health and wellness, community participation

University of Alabama at Birmingham Traumatic Brain Injury Model System Center (UAB-TBIMS)

UAB-TBIMS conducts research supports people with TBI, their families, and the rehabilitation professionals who support them. The video Tips for People with TBI and their Families During COVID-19 offers suggestions for individuals to maintain their health and daily living from two UAB-TBIMS psychologists. Tips include maintaining a routine, staying informed and following recommended prevention guidelines, asking for help, and doing what you can to maintain your physical and mental health like exercise, learning activities, and keeping medications up to date.
Keywords: Traumatic brain injury, health and wellness, community participation

Posted in Right Resources Right Now | Tagged , | 2 Comments

Dementia: A Disorder that Affects Cognitive Function

Posted on December 17, 2020 by

According to the National Institute of Aging (NIA) at the National Institutes of Health (NIH), dementia is the “loss of cognitive functioning – thinking, remembering, and reason – and behavioral abilities to such an extent that it interferes with a person’s daily life and activities.” Cognitive functions include memory, language skills, visual perception, problem solving, among others. The personalities of some people with dementia may change, while others may not be able to control their emotions. Dementia ranges in severity: During the early stages, dementia may affect a person’s functioning and have an impact on their daily activities such as driving or buying groceries. At the most severe stage, people with dementia must depend on their caregivers for basic activities of daily living.

There are various factors that may increase the risk for dementia. According to the Centers for Disease Control and Prevention (CDC), these factors include age, family history, poor heart health, and traumatic brain injury (TBI). Older African Americans and Latinx are more likely to develop dementia than their white counterparts. Dementia is diagnosed when a healthcare provider performs tests on attention, memory, problem solving, and other cognitive abilities to see if there is a cause of concern. Underlying causes of dementia are determined by a physical exam, blood tests, and brain scans like a CT or MRI.

Although dementia is more common as people grow older, it is not a normal part of aging. However, some forms of dementia, such as frontotemporal disorders, are more common in middle-aged adults than they are in older adults. The most common types of dementia include Alzheimer’s disease, vascular dementia, Lewy body dementia, and mixed dementia. The treatment for dementia depends on the underlying cause. Neurodegenerative dementias have no cure. However, there are medications that may help protect the brain or manage symptoms such as anxiety or behavior changes.

NARIC’s information specialists searched REHABDATA and found nearly 2,000 documents on dementia related topics from the NIDILRR community and beyond, including the international research community. These documents include articles, factsheets and guides in English and Spanish. Contact NARIC’s information specialists if you would like to learn more about dementia or if you need dementia-related resources.

Posted in Answer Queue | Tagged , , , , , | Leave a comment

Demencia: Un trastorno que afecta la función cognitiva

Posted on December 17, 2020 by

Según el Instituto Nacional de Envejecimiento (NIA, por sus siglas en inglés) en los Institutos Nacionales de Salud (NIH, por sus siglas en inglés), la demencia es la “pérdida del funcionamiento cognitivo – pensamiento, recuerdo, y la razón – y las habilidades conductuales hasta tal punto que interfieren con la vida y las actividades diarias de una persona.” Las funciones cognitivas incluyen la memoria, las habilidades del lenguaje, percepción visual, resolución de problemas, entre otros. Las personalidades de algunas personas con demencia pueden cambiar, mientras que otras tal vez no pueden controlar sus emociones. La demencia varía en gravedad: durante las primeras etapas, la demencia puede afectar el funcionamiento de una persona y tener un impacto en sus actividades diarias como conducir o comprar alimentos. En la etapa más grave, las personas con demencia deben depender de sus cuidadores para las actividades básicas de la vida diaria.

Hay varios factores que pueden aumentar el riesgo de la demencia. Según los Centros para el Control y la Prevención de Enfermedades (CDC, por sus siglas en inglés), estos factores incluyen la edad, historia familiar, pobre salud del corazón, y la lesión cerebral traumática (LCT). Los afroamericanos y latinos mayores son más probables de desarrollar la demencia que sus compañeros blancos. Se diagnostica la demencia cuando un proveedor de atención médica lleva a cabo unas pruebas sobre la atención, memoria, resolución de problemas, y otras habilidades cognitivas para ver si hay causa de preocupación. Las causas subyacentes de la demencia se determinan mediante un examen físico, análisis de sangre, y escáneres cerebrales como una tomografía computarizada o una resonancia magnética.

Aunque la demencia es más común a mediante que las personas envejecen, no es una parte normal del envejecimiento. Sin embargo, algunas formas de demencia, como los trastornos frontotemporales (en inglés), son más comunes en adultos de edad mediana que en los adultos mayores de edad. Los tipos más comunes de demencia incluyen la enfermedad de Alzheimer, demencia vascular, demencia de cuerpo de Lewy, y la demencia mixta. El tratamiento para la demencia depende en la causa subyacente. Las demencias neurodegenerativas no tienen cura. Sin embargo, hay medicamentos que pueden ayudar a proteger el cerebro o manejar los síntomas como la ansiedad o cambios conductuales.

Los especialistas en información de NARIC buscaron en REHABDATA y encontraron casi 2,000 documentos sobre los temas relacionados con la demencia de la comunidad de NIDILRR y de otros lugares (en inglés), incluyendo la comunidad internacional de investigación. Estos documentos incluyen artículos, hojas informativas, y guías en inglés y español. Comuníquese con los especialistas en información de NARIC si desea obtener más información sobre la demencia o si necesita recursos relacionados con la demencia.

Posted in Answer Queue, Spanish | Tagged , , , , , , , , | Leave a comment

Human Rights Day: Recognizing the Rights and Freedoms of Everyone

Posted on December 10, 2020 by

According to the Office of the High Commissioner of the United Nations, Human Rights Day is “observed by the international community every year on December 10” and “commemorates the day in 1948” when the United Nations General Assembly adopted the Universal Declaration of Human Rights. This universal declaration sets a broad range of fundamental rights and freedoms to which everyone is entitled, including people with disabilities. It also guarantees the rights of every person everywhere, without distinction based on nationality, disability, place of residence, gender, national or ethnic origin, or any other status.

The Universal Declaration of Human Rights is not a binding document. However, it has inspired more than 60 human rights instruments and declarations, including the International Convention on the Rights of Persons with Disabilities (ICRPD). The ICRPD is an international treaty that promotes, protects, and ensures the full and equal enjoyment of all human rights and freedoms by all people with disabilities and promotes the respect for their inherent dignity. The Convention covers several topics, including equality and non-discrimination, right to life, accessibility, independent living, equal recognition before the law, and more.

Throughout its history, NIDILRR has supported the full participation of people with disabilities in education, employment, and community living through the research and development activities it funds. These include research on the rights of people with disabilities, how laws and policies are enforced to remove or prevent barriers to participation, and how to empower people with disabilities to advocate for their rights. The NIDILRR-funded projects below are just a small sample of the work done by NIDILRR grantees in this area:

  1. The Parents Empowering Parents: National Research Center for Parents with Disabilities and Their Families supports the rights of parents with disabilities and their families through population-based research and analysis of national datasets to inform policy and practice and systematic analysis of state legislation and child welfare policies to identify facilitators and barriers to systematic change. This Center provides information sheets, research briefs, and other resources in English and Spanish for parents with disabilities, legal professionals, social workers, and researchers. These resources cover a variety of topics, including child-welfare law.
  2. The ADA National Network of regional centers offer training and technical assistance to individuals with disabilities, private entities, and state and local governments to understand their rights and responsibilities under the Americans with Disabilities Act (ADA) and other relevant laws. Individual centers conduct webinars, offer publications and courses, and staff a toll-free information line (800/949-4ADA). In addition, these centers conduct research on various ADA related topics such as compliance among state and local municipalities, access to health care, emergency preparedness, substance use disorders and disability rights, and deinstitutionalization.
  3. The Temple University RRTC on Community Living and Participation of People with Serious Mental illness (TU Collaborative) advances the development of interventions that maximize community living and participation of individuals with severe mental illness (SMI) through research and knowledge translation activities in partnership with consumers and other key stakeholders, and serves as a national resources center for people with SMI, their families, service and support providers, researchers, policymakers, and other stakeholders. The TU Collaborative also provides resources and information on policy, discrimination, criminal justice, and more. Their podcast, Collab Chats, covers various topics, including the voting rights and access for people with disabilities.
  4. The Rehabilitation Engineering Research Center for Wireless Inclusive Technologies (Wireless RERC) creates and promotes inclusive wireless technologies that improve the ability of individuals with disabilities to independently perform activities of their choice now, and in a fully-engaged and all-inclusive future; and works with industry, government, and disability stakeholders to raise awareness and champion adoption of accessible solutions for wirelessly connected technologies. Outcomes of this project include encouraging federal agencies and the wireless communications industry to adopt regulatory policies that increase accessible communications, including emergency alerts over multiple platforms.

Are you interested in learning more about the rights of people with disabilities? NARIC’s information specialists searched REHABDATA and found over 400 documents from the NIDILRR community and beyond on the civil rights of people with disabilities. You may want to also take a look at NARIC’s FAQs on the laws that protect the rights of people with disabilities, including the laws that protect their voting rights. If you would like to learn more about NIDILRR’s work in this area or if you need resources to learn more about your rights, please contact NARIC’s information specialists.

Posted in Uncategorized | Tagged , , , , , , , , , , | Leave a comment

Día de Derechos Humanos: Reconocimiento de los derechos y libertades de todos

Posted on December 10, 2020 by

Según la Oficina del Alto Comisionado de las Naciones Unidas, el Día de Derechos Humanos es “observado por la comunidad internacional cada año el 10 de diciembre” y “conmemora el día en 1948” cuando la Asamblea General de las Naciones Unidas adoptó la Declaración Universal de Derechos Humanos. Esta declaración universal establece una amplia gama de derechos y libertades fundamentales a los que todos tienen derecho, incluyendo las personas con discapacidades. También garantiza los derechos de todas las personas en todas partes, sin distinción de nacionalidad, discapacidad, lugar de residencia, género, origen nacional o étnico, o cualquier otra condición.

La Declaración Universal de Derechos Humanos no es un documento vinculante. Sin embargo, ha inspirado más de 60 instrumentos y declaraciones de derechos humanos, incluyendo la Convención Internacional sobre los Derechos de Personas con Discapacidades (ICRPD, por sus siglas en inglés). La ICRPD es un tratado internacional que promueve, protege, y garantiza el disfrute pleno y equitativo de todos los derechos humanos y libertades por todas las personas con discapacidad y promueve el respeto por su dignidad inherente. La Convención cubre varios temas, incluyendo la igualdad y no discriminación, derecho a la vida, accesibilidad, vida independiente, reconocimiento igual ante la ley, y más.

A lo largo de su historia, NIDILRR (en inglés) ha apoyado la plena participación de las personas con discapacidades en la educación, empleo, y vida comunitaria a través de las actividades de investigación y desarrollo que financia. Estas actividades incluyen la investigación sobre los derechos de las personas con discapacidad, cómo se aplican las leyes y políticas para eliminar o prevenir las barreras a la participación, y cómo empoderar a las personas con discapacidades para que se defienden sus derechos. Los proyectos financiados por NIDILRR a continuación son solo una pequeña muestra del trabajo realizado por los concesionarios de NIDILRR en esta área:

  1. El Padres Empoderando a Padres: Centro Nacional de Investigación para los Padres con Discapacidades y Sus Familias apoya los derechos de padres con discapacidades y sus familias a través de la investigación basada en la población y análisis de conjuntos de datos nacionales para informar la política y práctica y el análisis sistemático de legislación y políticas de bienestar infantil estatales para identificar los facilitadores y las barreras al cambio sistemático. Este Centro proporciona hojas informativas, resúmenes de investigación, otros recursos (en inglés) en inglés y español para los padres con discapacidades, profesionales legales, trabajadores sociales, e investigadores. Estos recursos cubren una variedad de temas, incluyendo la ley de bienestar infantil.
  2. La Red Nacional sobre la ADA y sus centros regionales (en inglés) ofrecen capacitación y asistencia técnica a las personas con discapacidades, entidades privadas, y gobiernos estatales y locales para comprender sus derechos y responsabilidades bajo la Ley de Estadounidenses con Discapacidades (ADA, por sus siglas en inglés) y otras leyes relevantes. Los centros individuales realizan webinars, ofrecen publicaciones y cursos, y el personal tiene una línea de información gratuita (800/949-4ADA). Además, estos centros realizan investigaciones sobre varios temas relacionados con la ADA, como el cumplimiento entre las municipalidades estatales y locales, acceso a la atención médica, preparación para emergencias, trastornos de uso de sustancias y los derechos por discapacidad, y la desinstitucionalización.
  3. El RRTC sobre la Vida Comunitaria y Participación de Personas con Enfermedad Mental Grave en la Universidad Temple (TU Colaborativa) (en inglés) avanza el desarrollo de intervenciones que maximizan la vida comunitaria y participación de personas con enfermedad mental grave (EMG) a través de las actividades de investigación y traducción de conocimientos en asociación con los consumidores y otras personas interesadas clave, y sirve como un centro nacional de recursos para las personas con EMG, sus familias, proveedores de servicios y de apoyo, investigadores, formuladores de políticas, y otras personas interesadas. TU Colaborativa también proporciona recursos e información (en inglés) sobre la política (en inglés), discriminación (en inglés), justicia criminal, y más. Su podcast, Collab Chats (en inglés) cubre varios temas, incluyendo los derechos de votación y acceso para personas con discapacidades (en inglés).
  4. El Centro de Investigación de la Ingeniería de Rehabilitación para las Tecnologías Inalámbricas Inclusivas (RERC Inclusivo) (en inglés) crea y promueve las tecnologías inalámbricas inclusivas que mejoran la capacidad de las personas con discapacidades para realizar de forma independiente las actividades que elijan ahora y en un futuro totalmente comprometido e inclusivo; y trabaja con la industria, el gobierno, y personas interesadas en discapacidad para crear la conciencia y promover la adopción de soluciones accesibles para las tecnologías conectadas de forma inalámbrica. Los resultados de este proyecto incluyen alentar a las agencias federales y la industria de comunicaciones inalámbricas para adoptar las políticas regulatorias que aumentan las comunicaciones accesibles, incluyendo las alertas de emergencia en múltiples plataformas.

¿Está interesado en obtener más información sobre los derechos de personas con discapacidades? Los especialistas en información de NARIC buscaron en REHABDATA y encontraron más de 400 documentos de la comunidad y de otros lugares sobre los derechos civiles de personas con discapacidades (en inglés). También le recomendamos que consulte las preguntas frecuentes de NARIC sobre las leyes que protegen los derechos de las personas con discapacidades, incluyendo las leyes que protegen su derecho de voto. Si desea obtener más información sobre el trabajo de NIDILRR en esta área o si necesita recursos para aprender más sobre sus derechos, comuníquese con los especialistas en información de NARIC.

Posted in Spanish, Uncategorized | Tagged , , , , , , , , , , , | Leave a comment

Is Your Research Pitch “Camera Ready”?

Posted on December 9, 2020 by

In talking with researchers and developers in the NIDILRR grantee community, we’ve learned that they are passionate about their work and excited to share it with their colleagues, practitioners, and, most importantly, people with disabilities and their families. These researchers are incredibly knowledgeable about their field and can spend whole conferences talking about what they do. That passion and expertise is wonderful, but it may not reach everyone who needs to hear it. Conferences are expensive to attend and long presentations full of technical jargon can be challenging to follow.

Having a low-jargon speech or video ready to go could help get this information into the hands and minds of more stakeholders. The rise of short-form presentations, often in plain language, is increasing access to information about research and development. Possibly the most famous are TED Talks, with thousands of videos of experts sharing their knowledge and experience in engaging talks. Other formats include the Three-Minute Thesis competition, which challenges doctoral students to distill their thesis into one slide and a three-minute talk aimed at a non-specialist audience; Pecha Kucha, where presentations are 20 slides and 20 seconds long; and the Elevator Pitch for Scientists, a brief statement of the why and how of a research project.

Here are some examples of NIDILRR grantees who pitched their research and development work in brief and approachable formats:

Karl Zelik, PhD, leads a field-initiated project on toe-joint articulation in passive and powered prostheses. He and his lab staff have a series of fun and interesting videos about biomechanics, wearables, and machine learning to engage K-12 students, including this 2-minute video What Biomechanics Means to Us.

Michelle Mullen, PhD, leads the Helping Youth on the Path to Employment (HYPE) Project which is running its program on several college campuses. Dr. Mullen had her pitch ready for this segment on Channel 12 in Binghamton NY where the latest HYPE program was starting up.

Rehabilitation Engineering Research Center to Support Aging-in-Place for People with Long -Term Disabilities and the Disability and Rehabilitation Research Project on Universal Design in the Workplace published a video series on the Seven Principles of Universal Design. The series features clear examples universal design solutions that make places and products accessible as an afterthought.

Cognitopia developed the MyLife Tool under several NIDILRR grants. MyLife is a suite of apps that help students with cognitive disabilities self-advocate and self-direct toward their educational and employment goals. In a short video, Makenna demonstrates using the platform to lead discussions for her Individualized Education Plan (IEP) in a dynamic and engaging way. Cognitopia also maintains a blog with short, shareable articles showing real people using their tools in real life situations.

Are you ready to craft your elevator pitch? Here are some resources from the NIDILRR community and elsewhere to get you started. Tag us on Facebook or Twitter when your TED talk airs!

Plain Language Summary Tool from the Center on Knowledge Translation for Disability and Rehabilitation Research, along with a long list of plain language resources from the scientific community and federal agencies.

Engage the Media from the Model Systems Knowledge Translation Center offers tips and tools for working with a communications office, building an effective press release, responding to media requests, and developing key messages for effective communication.

Plainlanguage.gov promotes the use of plain language for all government communications. Visit the training section for videos, style guides, and other resources for the public.

Alan Alda Center for Communicating Science empowers scientists and health professionals to communicate complex topics in clear, vivid, and engaging ways. The Alda-Kavli Learning Center offers articles, webinars, and events around effective and engaging science communication.

Posted in Right Resources Right Now | Tagged , , | Leave a comment

¿Su propuesta de investigación está “lista para la cámara”?

Posted on December 9, 2020 by

Hablando con los investigadores y desarrolladores de la comunidad de concesionarios de NIDILRR, hemos aprendido que les apasiona su trabajo y les entusiasma compartirlo con sus colegas, profesionales, y, lo más importante, las personas con discapacidades y sus familias. Estos investigadores tienen un conocimiento increíble sobre su campo y pueden pasar conferencias enteras hablando de lo que hacen. Esa pasión y experiencia son maravillosas, pero puede que no llegue a todos los que necesitan escucharlas. Las conferencias son caras de asistir y las presentaciones largas y llenas de jerga técnica.

Tener un discurso o un vídeo con poca jerga listo para usar podría ayudar a que esta información llegue a las manos y mentes de más personas interesadas. El auge de las presentaciones breves, a menudo en lenguaje sencillo, está aumentando el acceso a la información sobre la investigación y desarrollo. Posiblemente los más famosos sean “TED Talks”, con miles de vídeos de expertos que comparten su conocimiento y experiencia en charlas interesantes. Otros formatos incluyen el concurso Tesis de Tres Minutos (en inglés), que desafía a los estudiantes de doctorado a resumir su tesis en una diapositiva y una charla de tres minutos dirigida a un público no especializado; Pecha Kucha (en inglés), donde las presentaciones tienen 20 diapositivas y 20 segundos de duración; y el “Elevator Pitch” para científicos (en inglés), una breve declaración del por qué y el cómo de un proyecto de investigación.

Aquí hay algunos ejemplos de concesionarios de NIDILRR que presentaron su trabajo de investigación y desarrollo en formatos breves y accesibles:

Karl Zelik, PhD, lidera un proyecto iniciado en el campo sobre la articulación del dedo de pie en prótesis pasivas y eléctricas (en inglझs). Él y su personal de laboratorio tienen una serie de vídeos divertidos e interesantes sobre la biomecánica, usables, y aprendizaje de máquina (en inglés) para involucrar a los estudiantes de K-12, incluyendo este vídeo de 2 minutos Qué significa la biomecánica para nosotros (en inglés).

Michelle Mullen, PhD, dirige el Proyecto Ayudando a los Jóvenes en el Camino al Empleo (HYPE, por sus siglas en inglés) (en inglés), que está ejecutando su programa en varios campus universitarios. La Dra. Mullen tenía listo su discurso para este segmento en el Canal 12 en Binghamton, NY, donde estaba comenzando el último programa HYPE (en inglés).

El Centro de Investigación de la Ingeniería de Rehabilitación para Apoyar el Envejecimiento-en-el-Lugar para Personas con Discapacidades a Largo Plazo y el Proyecto de Investigación de Rehabilitación sobre el Diseño Universal en el Lugar de Trabajo han publicado una serie de vídeos sobre los Siete Principios del Diseño Universal (en inglés). La serie destaca ejemplos claros de soluciones del diseño universal que hacen que los lugares y productos sean accesibles como una ocurrencia tardía.

Cognitopia desarrolló el instrumento “MyLife” (en inglés) bajo varias subvenciones de NIDILRR. MyLife es un conjunto de instrumentos que ayudan a los estudiantes con discapacidades cognitivas a autodefender y autodirigir hacia sus metas educacionales y de empleo. En un vídeo corto (en inglés), Makenna demuestra el uso de la plataforma para dirigir las discusiones para su Plan de Educación Individualizada (PEI) en una manera dinámica y atractiva. Cognitopia también mantiene un blog con artículos cortos y compartibles que muestran a personas reales usando sus instrumentos en situaciones de vida real.

¿Estás listo para crear tu discurso de ascensor? Aquí hay algunos recursos de la comunidad de NIDILRR y de otros lugares para comenzar. ¡Etiquétanos en Facebook o Twitter cuando se transmita su TED Talk!

El Instrumento de resumen en lenguaje sencillo (en inglés) del Centro sobre la Traducción de Conocimientos para la Investigación de Discapacidad y Rehabilitación, junto con una larga lista de recursos en lenguaje sencillo de la comunidad científica y agencias federales.

Involucra a los medios de comunicación (en inglés) del Centro de Traducción de Conocimientos de los Sistemas Modelo ofrece consejos e instrumentos para trabajar con una oficina de comunicación, crear un comunicado de prensa eficaz, responder a las solicitudes de los medios de comunicación, y desarrollar mensajes clave para la comunicación eficaz.

Plainglanguage.gov promueve el uso de lenguaje sencillo para todas las comunicaciones gubernamentales. Visite la sección de capacitación (en inglés) para ver vídeos, guías de estilo, y otros recursos para el público.

El Centro Alan Alda para Comunicar la Ciencia permite a los científicos y profesionales de salud a comunicar temas complejos de forma clara, vívida, y atractiva. El Centro Alda-Kavli de Aprendizaje (en inglés) ofrece artículos, webinars, y eventos sobre la comunicación científica eficaz y atractiva.

Posted in Right Resources Right Now, Spanish | Tagged , | Leave a comment

Imserso: Assisting Older Adults and People with Disabilities to Live Their Best Lives

Posted on December 3, 2020 by

The Institute of Older Adults and Social Services (Imserso, Spanish acronym) (in Spanish) was founded in 1978 to assist older adults and people with disabilities (video in Spanish) to live as independently as possible through research, information and referral, and rehabilitation services and is part of Spain’s Ministry of Health, Consumption, and Social Welfare. Imserso offers information and referral services for older adults (in Spanish) on a variety of topics that include active aging, statistics, and personal autonomy. Imserso also runs the Autonomy and Attention to Dependence System (SAAD, acronym in Spanish) (in Spanish), which provides information on financial aid for caregivers, statistical information, and related topics. SAAD is the accrediting body for care centers, services, and related entities in Ceuta and Melilla, Spain. Imserso also runs and supports various centers (in Spanish) that include information and referral centers, rehabilitation center for people with physical disabilities and other disabilities, centers for older adults, and a center to assist people who are Deaf or hard of hearing. The Institute also assists older adults with their retirement (in Spanish) and has a travel program (in Spanish) to help older adults and people with disabilities with their travel plans. Imserso’s electronic network (in Spanish) provides information on tourism, dependence and disability, grants, its centers, and more. Individuals may personalize the network portal to their needs. The Institute also provides the latest information on the COVID-19 pandemic, COVID-19 and social services, and employment, along with the latest publications from the federal government and others on topics related to older adults and people with disabilities in Spain. Finally, Imserso’s library provides information and referral services (in Spanish) to older adults, people with disabilities, and their families through their helpline and online.

Posted in Organization, Spanish | Tagged , , , , , , , | Leave a comment

Imserso: Ayudando a los adultos mayores y personas con discapacidades a vivir sus mejores vidas

Posted on December 3, 2020 by

El Instituto de Adultos Mayores y Servicios Sociales (Imserso) fue fundado en 1974 para ayudar a los adultos mayores y personas con discapacidades (vídeo) a vivir de la manera más independientemente posible a través de investigación, información y referencia, y servicios de rehabilitación y es parte del Ministerio de Sanidad, Consumo, y Bienestar Social. Imserso ofrece servicios de información y referencia para los adultos mayores sobre una variedad de temas que incluyen el envejecimiento activo, estadísticas, y autonomía personal. El Imserso también opera el Sistema para la Autonomía y Atención a la Dependencia (SAAD), que brinda información sobre las ayudas económicas para los proveedores de atención, información estadística, y temas relacionados. SAAD es el organismo acreditador de los centros de asistencia, servicios, y entidades relacionadas en Ceuta y Melilla, España. Imserso también dirige y apoya varios centros que incluyen los centros de información y referencia, centro de rehabilitación para personas con discapacidades físicas y otras discapacidades, centros para los adultos mayores, y un centro que ayuda a las personas sordas o con problemas de audición. El Instituto también ayuda a los adultos mayores con su jubilación y un programa de viaje para ayudar a los adultos mayores y personas con discapacidades con sus planes de viaje. La red electrónica de Imserso brinda información sobre el turismo, la dependencia y discapacidad, becas, sus centros, y más. Las personas pueden personalizar el portal de la red según sus necesidades. El Instituto también brinda la información más reciente sobre la pandemia de COVID-19, COVID-19 y los servicios sociales, y empleo, junto con las últimas publicaciones del gobierno federal y otros sobre los temas relacionados con los adultos mayores y personas con discapacidades en España. Finalmente, la biblioteca de Imserso brinda servicios de información y referencia a los adultos mayores con discapacidades, y sus familias a través de su línea telefónica de ayuda y en línea.

Posted in Organization, Spanish | Tagged , , , , , , , , | Leave a comment

Preguntas y Respuestas: Noticias Mensuales para la Comunidad de la Discapacidad para Noviembre de 2020 sobre la Crianza de Niños con Discapacidades

Posted on November 25, 2020 by

Preguntas y Respuestas es un recurso mensual para la Comunidad de la Discapacidad de habla hispana que llena una necesidad de información. La pregunta de este mes es: Soy padre de un niño con discapacidades y necesito recursos para ayudarme a ayudar a mi hijo. ¿Qué investigaciones, información, y recursos están disponibles? Este número de Preguntas y Respuestas incluye artículos que discuten una intervención para ayudar a los padres de hijos con discapacidades intelectuales y de desarrollo (DID) a manejar los problemas de conducta; perspectivas de los padres sobre cómo ayudar a sus hijos con discapacidades a participar en la actividad física; consejos sobre el cuidado personal mientras atiende a familiares con condiciones de salud mental durante una pandemia; un estudio sobre qué factores ayudaron u obstaculizaron la participación de proveedores de atención latinos en la planificación de la transición de sus hijos; tecnología de asistencia (TA) para bebés, niños pequeños, y niños; programas de educación individualizada (PEI); y más. Obtenga más información sobre Preguntas y Respuestas.

Proyectos Financiados por NIDILRR:

Los investigadores en el proyecto Mejorando las Habilidades de Crianza: Aplicación de un Modelo de Tres Niveles Basado en la Web (en inglés) están utilizando los aportes de los padres y otras personas interesadas usando un marco de Investigación Comprometida con la Comunidad para desarrollar la intervención Apoyo a la Capacitación en Línea por Niveles (TOTS, por sus siglas en inglés), un modelo de tres niveles basado en la web de capacitación y apoyo para padres para manejar el comportamiento desafiante de sus hijos pequeños con discapacidades intelectuales y de desarrollo en el hogar y en la comunidad. Prueban la eficacia de TOTS usando un ensayo controlado aleatorizado y difunden la intervención para una implementación amplia en los Centros Universitarios para la Excelencia en las Discapacidades de Desarrollo. A través del desarrollo y evaluación de TOTS, los investigadores quieren mejorar las habilidades de crianza, autoeficacia, la resolución de problemas, y el manejo del comportamiento infantil para ayudar a los padres a ayudar a sus hijos con DID.

El Centro de Investigación de Rehabilitación y Capacitación (RRTC, por sus siglas en inglés) sobre el Empleo de Jóvenes con Discapacidades en Edad de Transición (en inglés) genera intervenciones basadas en la evidencia para ayudar a los jóvenes a entrar al empleo integrado competitivo y abordar la necesidad para la investigación basada en la evidencia para los jóvenes con discapacidades, miembros de la familia, personal escolar, consejeros de rehabilitación vocacional, y otras personas interesadas sobre la información e intervenciones que pueden impactar los resultados de empleo de los jóvenes con discapacidades en edad de transición. El RRTC brinda recursos basados en la evidencia como artículos, resúmenes, guías, y hojas informativas y proporciona capacitación a través de webcasts, kits de instrumentos, y reuniones cara-a-cara. El RRTC también comparte las últimas noticias sobre los temas relacionados con el empleo de jóvenes con discapacidades en edad de transición.

De la Colección de NARIC:

El artículo, Las perspectivas de los padres de jóvenes con discapacidades hacia la actividad física: Un análisis sistemático (en inglés), discute un estudio que examinó la literatura de investigaciones publicada que pertenece a las perspectivas de los padres hacia la actividad física de los jóvenes con discapacidades al describir las características de estudio y hallazgos mayores. Los hallazgos de este estudio sugieren que los padres han informado de múltiples razones para involucrar a sus hijos con discapacidades en la actividad física. Sin embargo, se informó de numerosas barreras, como la falta de programas/tiempo y la discapacidad de sus hijos, que afectan negativamente la participación en actividades físicas. Los investigadores señalan que los padres reclaman la necesidad de capacitación proporcionada por profesionales calificados para mejorar la participación.

En la hoja de consejos, Los padres intervienen: Nuestras estrategias de autoatención mientras apoyamos a los seres queridos con afecciones de salud mental durante una pandemia (en inglés), miembros de la Junta Asesora de Familias del Centro de Capacitación en la Investigación de Rehabilitación sobre el Aprendizaje y Trabajo Durante la Transición a la Edad Adulta (Transiciones ACR) (en inglés) financiado por NIDILRR comparten sus pensamientos sobre cómo adaptaron sus estrategias de autoatención. La hoja de consejos también comparte consejos de los miembros sobre cómo apoyar a sus seres queridos con afecciones de salud mental frente a la pandemia de coronavirus (COVID-19).

Enfoque De Investigación:

El artículo, Las Familias Latinas en Áreas Rurales Recurren a Su Comunidad para Apoyar a los Adultos Jóvenes con Discapacidades en Transición, discute un reciente estudio financiado por NIDILRR donde los investigadores entrevistan a inmigrantes latinos en un pueblo rural que eran familiares de adultos jóvenes con discapacidades para averiguar qué factores ayudaron o dificultaron su participación en la planificación de la transición para sus hijos con discapacidades. Los investigadores identificaron varios temas comunes en las experiencias de los participantes: la importancia de la familia, las relaciones escolares tensas, los desafíos del idioma y la ciudadanía, y la importancia de las conexiones de la comunidad latina. Los autores notaron que las familias inmigrantes latinas de adultos jóvenes con discapacidades pueden enfrentar desafíos únicos que pueden limitar las perspectivas de empleo y participación comunitaria de sus hijos después de la escuela secundaria y esto puede ser especialmente cierto para las familias latinas que viven en comunidades rurales donde los servicios y los educadores altamente calificados pueden escasear.

Tecnología:

El Centro PACER ha publicado un artículo, La tecnología de asistencia para los bebés, niños pequeños, y niños jóvenes (PDF), que discute estudios que muestran como la tecnología de asistencia (TA) puede ayudar a los niños pequeños con discapacidades con su desarrollo a medida que crecen. El artículo también analiza los tipos de TA que pueden ayudar a los niños pequeños de esta población, cómo las familias pueden obtener la TA para sus hijos con discapacidades, la Ley de Educación para Personas con Discapacidades (IDEA, por sus siglas en inglés), donde los padres pueden obtener más información sobre IDEA y TA para los niños con discapacidades, y más.

Educación:

El artículo, Programas de Educación Individualizada (PEI) de KidsHealth en Nemours (en inglés), define los PEI y discute cómo los padres son miembros cruciales del equipo de educación de su hijo. El artículo también discute quien es elegible para un PEI, cómo se desarrollan los PEI, quien está en el equipo de educación, y el proceso de referencia y evaluación. La discusión también incluye los derechos legales de los padres y más. Este artículo también está disponible en inglés.

Recursos:

  • El Centro de Información y Recursos para Padres tiene una lista alfabética de recursos para los padres que hablan español de niños con discapacidades sobre una variedad de temas que van desde la Ley de Estadounidenses con Discapacidades (ADA) hasta el apoyo para los padres, de los derechos de los padres hasta las adaptaciones para los niños con discapacidades, y más.
  • La Fundación de Christopher y Dana Reeves (en inglés) ha publicado una página web con información para padres de niños con parálisis, que brinda información general sobre las organizaciones, centros de recursos, agencias federales y estatales, y programas que ayudan a los padres y a las familias de niños con parálisis. La página web también discute IDEA y cómo se aplica a los niños con parálisis y sus familias y define/discute las intervenciones tempranas. Finalmente, incluye información sobre el Programa Estatal de Seguro de Salud de Niños y provee una lista de organizaciones que ayudan a los padres de niños con parálisis y otras discapacidades. La Fundación también brinda una guía de recursos sobre la parálisis en español.
  • El Centro Nacional de Asistencia y Capacitación sobre la Ley de Tecnología de Asistencia (AT3, por sus siglas en inglés) (en inglés) brinda información sobre la Ley de Tecnología de asistencia Programas Estatales de Tecnología de Asistencia, y tecnología de asistencia en general. Encuentre su programa estatal de TA aquí at3center.net/state program (en inglés). AT3 comparte información sobre la financiación de dispositivos de TA y prestación de dispositivos, demonstraciones, y reutilización. La sección Explora TA del sitio web es un centro informativo para la información y recursos sobre una variedad de tecnologías de asistencia. Proporciona enlaces a fuentes de información acreditadas sobre los dispositivos y servicios de TA en las áreas de educación, empleo, y vida comunitaria.

Instrumentos:

Más Investigaciones:

REHABDATA:

PubMed:

Investigaciones Internacionales:

Más información sobre Preguntas y Respuestas

Cada mes, revisamos las búsquedas que aparecen en nuestro blog y a través de las solicitudes de información hechas por nuestros clientes que hablan español y elegimos un tema que llena la necesidad mayor. Cada recurso mencionado anteriormente está asociado con la necesidad de información de este mes. Buscamos varios recursos y fuentes de noticias en español durante todo el mes para traerle estos artículos. Con la excepción de los Proyectos de NIDILRR, De la Colección de NARIC, y Más Investigaciones, todos los enlaces a los artículos y recursos se encuentran en español.

Posted in Answer Queue, Publications, Respuestas a las Preguntas, Spanish | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Answered Questions: Monthly News for the Disability Community for November 2020 on Parenting Children with Disabilities

Posted on November 25, 2020 by

Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. This month’s question is: I am a parent of a child with disabilities and I need resources to help me help my child. What research, information, and resources are available? This edition of Answered Questions includes items that discuss an intervention to assist parents of children with intellectual and developmental disabilities (IDD) manage behavioral challenges; perspectives of parents on helping their children with disabilities engage in physical activity; tips on self-care while caring for family members with mental health conditions during a pandemic; a study on what factors helped or hindered Latina caregivers’ involvement in their children’s transition planning; assistive technology (AT) for infants, toddlers, and young children; individualized education programs (IEPs); and more. More about Answered Questions.

NIDILRR-Funded Projects:

Researchers at the Enhancing Parenting Skills: Application of a Web-Based Three-Tiered Model (in English) project are using input from parents and other stakeholders using a Community-Engaged Research framework to develop the Tiered Online Training Support (TOTS) intervention, a web-based, three-tier model of parent training and support to manage the challenging behavior of their young children with intellectual and developmental disabilities at home and in the community. They test the efficacy of TOTS using a randomized controlled trial and disseminate the intervention for broad implementation in University Centers for Excellence in Developmental Disabilities. Through the development and evaluation of TOTS, researchers want to improve parenting skills, self-efficacy, problem-solving, and child behavior management to help parents help their children with IDD.

The Rehabilitation Research and Training Center (RRTC) on Employment of Transition-Age Youth with Disabilities (in English) generates evidence-based interventions to help youth to enter competitive integrated employment and addresses the need for evidence-based research for youth with disabilities, family members, school personnel, vocational rehabilitation counselors, and other stakeholders on information and interventions that can impact the employment outcomes of transition-age youth with disabilities. The RRTC provides evidence-based resources such as articles, briefs, guides, and fact sheets and provides training through webcasts, toolkits, and face-to-face meetings. The RRTC also shares the latest news on topics related to the employment of transition-age youth with disabilities.

From the NARIC Collection:

The article, The perspectives of parents of youth with disabilities toward physical activity: A systematic review (in English), discusses a study that examined published research literature pertaining to parents’ perspectives toward physical activity of youth with disabilities by describing study characteristics and major findings. The findings from this study suggest that parents have reported multiple reasons [CJ1] to engage their children with disabilities in physical activity. Yet, numerous barriers, such as lack of programs/time and their children’s disability, were reported that negatively impact participation in physical activities. The researchers note that parents are calling for the need for training provided by qualified professionals to enhance participation.

In the tip sheet, Parents chime in: Our self-care strategies while supporting loved ones with mental health conditions during a pandemic (in English), members of the Family Advisory Board of the NIDILRR-funded Learning and Working During the Transition to Adulthood Rehabilitation Research Training Center (Transitions ACR) (in English) share their thoughts on how they adapted their self-care strategies. The tip sheet also shares tips from the members on supporting their loved ones with mental health conditions in the face of the coronavirus pandemic (COVID-19).

Research In Focus:

The article, Latina Family Caregivers in Rural Areas Turn to Their Community to Support Young Adults with Disabilities in Transition, discusses a recent NIDILRR-funded study where researchers interviewed Latina immigrants in a rural town who were family members of young adults with disabilities to find out what factors helped or hindered their involvement in the transition planning for their children with disabilities. The researchers identified several common themes in the participants’ experiences: the importance of family, strained school relationships, language and citizenship challenges, and the importance of Latino community connections. The authors noted that Latino immigrant families of young adults with disabilities may face unique challenges that can limit their children’s prospects for employment and community participation after high school and this may be especially true for Latino families living in rural communities where services and highly qualified educators may be in short supply.

Technology:

The PACER Center has published an article, Assistive Technology for Infants, Toddlers, and Young Children with Disabilities (PDF), that discusses studies that show how assistive technology (AT) may help small children with disabilities with their development as they grow up. The article also discusses the types of AT that may help young children, why AT is important for this population, how families may obtain AT for their child with disabilities, the Individuals with Disabilities Education Act (IDEA), where parents can learn more about IDEA and AT for children with disabilities, and more.

Education:

The article, Individualized Education Programs (IEP) from KidsHealth at Nemours (in English), defines IEPs and  discusses how parents are crucial members of their child’s education team. The article also discusses who is eligible for an IEP, how IEPs are developed, who is in the education team¸ and the referral and evaluation process. The discussion also includes parents’ legal rights and more. This article is also available in English.

Resources:

  • The Center for Parent Information and Resources has an alphabetical list of resources for Spanish-speaking parents of children with disabilities in a variety of topics that range from the Americans with Disabilities Act (ADA) to support for parents, from parents’ rights to accommodations for children with disabilities, and more.
  • The Christopher and Dana Reeve Foundation (in English) has published a webpage with information for parents of children with paralysis, which provides general information on organizations, resource centers, federal and state agencies, and programs that assist parents and families of children with paralysis. The webpage also discusses IDEA and how it applies to children with paralysis and their families and defines/discusses early interventions. Finally, it includes information on the State Children’s Health Insurance Program and provides a list of organizations that assist parents of children with paralysis and other disabilities. The Foundation also provides a resource guide on paralysis in Spanish.
  • The National Assistive Technology Act Technical Assistance and Training (AT3) Center (in English) provides information about the Assistive Technology Act, State Assistive Technology Programs, and general assistive technology. Find your state AT program here at3center.net/state program (in English). AT3 shares information about financing AT devices and device loans, demos, and reutilization. The Explore AT section of the website is a clearinghouse for information and resources on a variety of assistive technologies. It provides links to reputable information sources on AT devices and services in the areas of education, employment, and community living.

Tools:

Further Research:

REHABDATA:

PubMed:

International:

About Answered Questions

Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned above is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects, From the NARIC Collection, and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked.

Posted in Answer Queue, Publications, Respuestas a las Preguntas | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment