Seeing the child before the disability – UNICEF’s annual State of the World’s Children report.

On May 30^th, 2013, in Da Nang, Viet Nam, UNICEF released their annual report: State of the World’s Children 2013: Children with Disabilities, which discussed how children with disabilities and their communities benefit when society at large focuses on what these children can achieve instead of focusing on what they cannot achieve. The report shows how societies can include children with disabilities. This inclusion not only benefits children with disabilities; it benefits society as these children reach their full potential.

Anthony Lake, UNICEF Executive Director, states, “When you see the disability before the child, it is not only wrong for the child, but it deprives society of all that child has to offer. Their loss is society’s loss; their gain is society’s gain.” Currently, many of these children are excluded; many are cut off from much needed social services and legal protections because their birth is often unregistered. Mr. Lake continues, “For children with disabilities to count, they must be counted – at birth, at school, and in life.”

According to the press release shared yesterday, UNICEF’s report states that children with disabilities are the “least likely to receive health care or go to school. They are among the most vulnerable to violence, abuse, exploitation and neglect, particularly if they are hidden or put into institutions – as many are because of social stigma or the economic cost of raising them.” Economic and social factors influence the marginalization of these children, along with gender (as girls with disabilities are less likely to receive food and care than boys are). Yet at this time, there is little data on the number of children with disabilities, what types of disabilities these children have, and how the disabilities affect them and their lives. Due to this lack of data, few governments have dependable guides to allocate resources to be able to support and assist these children.

The report urges governments to keep their promises to children with disabilities. The report shares that one third of the world’s countries has failed to ratify the Convention on the Rights of Persons with Disabilities (CRPD) and urges governments to not only ratify it, but also to implement CRPD and the Convention on the Rights of the Child.

Please visit UNICEF to read their press release, their report, and their mission in full. UNICEF shares a short video version of their press release. If you are a parent, guardian, or care giver of a child with disabilities, please visit our Librarian’s Picks which shares useful resources and information. If you are the parent of an adult child with disabilities, here are some resources that may prove helpful along with the Librarian’s Picks mentioned. Please feel free to search our resources and publications; search our databases: Knowledgebase, REHABDATA, or the NIDRR Program Database; or please contact us via phone (800/346-2742), chat, or email.

Parenting an adult child with disabilities while aging with disabilities

Over the years, we have offered a list of Librarian’s Picks of resources for children with special needs. These are some of the best resources to help parents support their children through grade school, college, and into the workforce. However, as children with disabilities age, so do their parents and they often do so with their own age-related disabilities. Here, we offer several resources for parents of adult children with disabilities who may be aging with disabilities:

• Our-Kids-Adults provides support for parents and caregivers of teens and adults with disabilities. They provide a mailing list for parents and caregivers of teens and adults and one for young children. They also offer links to information on assistive technology and equipment advocacy, arts, community integration, life planning (financial and legal), leisure and recreation, housing, funding and benefits, and much more.
• Your local area agency on aging may provide services and information for parents aging with disabilities while caring for adult children with disabilities. Please visit The National Association of Area Agencies on Aging for a list of agencies to find the office in your state.
• You can also find different programs through www.eldercare.gov. They provide a list of programs that include aging and disability resource centers, case management, and caregiver programs.
• The Arc provides a network of over 700 state and local chapters and which provides supports and services that range from early intervention to respite care and transportation. You can find a local or state chapter by visiting the blue map on their site.

We ran a search of the NIDRR Program Database and found that NIDRR is currently funding several projects on parenting an adult child with disabilities while aging with a disability. One is called Families with Disabilities Through the Life Cycle: Disability Culture Perspectives (H133A110009) at Through the Looking Glass. We also searched through REHABDATA and found several articles within the database. Here are just a few of them:

• Midlife and aging parents of adults with intellectual and developmental disabilities: Impacts of lifelong parenting. NARIC Accession Number: J62515.
• Subjective burden and personal gains among older parents of adults with serious mental illness. NARIC Accession Number: J59131.
• Congregational participation and supports for children and adults with disabilities: Parent perception. NARIC Accession Number: J65694.

To run your own searches for projects and articles, please visit the NIDRR Program Database and REHABDATA respectively.

Osteoperosis and Women

Osteoporosis affects millions of Americans, most of them women. In fact, one in two women will suffer a fracture related to osteoporosis in her lifetime. Bone is a living tissue mostly made of collagen and throughout our lives, our bones continually remove and replenish old bone deposits. As children, more new bone is formed than old bone removed. By age 30 the trend is reversed and more old bone is removed than new bone restored. At this stage, if a person doesn’t have enough strong bone mass or the rate of bone loss after age 30 occurs too rapidly, osteoporosis can occur.  Unfortunately, this dilemma befalls women at high rates because of certain increased risk factors. Women can lose bone mass at rates up to 3% a year after age 30 because of the characteristics of perimenopause and menopause, and the decrease in estrogen production. Men generally experience lower rates of bone loss, but may still be at risk for fracture as they age. Eating healthily, staying active and avoiding excessive smoking and alcohol are all proven ways to slow down the degenerative properties of bones. Supplements of vitamin D and calcium are inexpensive, easily digestible and are as effective as naturally obtaining them from food. Also, doctor-recommended strengthening exercises can promote bone health and slow the effects of osteoporosis. The National Institutes of Health Osteoporosis and Related Bone Diseases National Resource Center is an excellent place to start learning about osteoporosis.

Mayo es el Mes de Concientización de la Neuropatía

El mes de mayo sigue siendo un mes muy ocupado para las celebraciones, como el Mes de Concientización de la Neuropatía (en inglés).

¿Qué es la neuropatía?

La neuropatía, también conocida como la neuropatía periférica, es el resultado de daño a los nervios que puede causar entumecimiento y dolor en sus manos y pies. Según la Clínica Mayo (en inglés), puede “resultar en problemas como las lesiones traumáticas, infecciones, problemas metabólicos, y la exposición a toxinas.” Estos problemas/causas pueden incluir el alcoholismo, la diabetes, infecciones, trastornos hereditarios, trauma o presión sobre el nervio, y las deficiencias de vitaminas. La neuropatía puede afectar a uno o más tipos de nervios (los nervios sensoriales, los nervios motores, y/o los nervios autónomos) y por lo general comienza en los nervios más largos (los que llegan a los dedos del pie).  Algunos de los signos y síntomas de la neuropatía incluyen la aparición gradual de entumecimiento y hormigueo en sus manos o pies; dolor ardiente; dolor agudo, punzante o eléctrico; una falta de coordinación; debilidad muscular o parálisis; y/o problemas intestinales. Consulte con su médico de inmediato si nota cualquiera hormigueo inusual, debilidad o dolor en las manos o los pies.

Hay varios objetivos en el tratamiento de la neuropatía, incluyendo la administración de la afección que causa la neuropatía y el alivio de los síntomas dolorosos. Existen medicamentos que pueden ayudar a controlar el dolor asociado con la neuropatía periférica incluyendo analgésicos, medicamentos anticonvulsivos, antidepresivos, o un parche de lidocaína. Hable con su médico sobre cuál es el medicamento correcto y adecuado para usted y si lo necesita. La estimulación nerviosa eléctrica transcutánea (TENS por sus siglas en inglés) también puede ayudar a aliviar los síntomas. También hable con su médico sobre este tratamiento para determinar si es adecuado para usted.

Recursos

Para obtener más información sobre la neuropatía y para encontrar grupos de apoyo en su área, por favor visite los siguientes recursos:

• La Clínica Mayo tiene una sección muy informativa sobre la neuropatía periférica.
• El Instituto Nacional de Enfermedad Neurológica y Accidente Cerebrovascular también tiene una página informativa junto con enlaces a organizaciones que pueden ser de ayuda para usted. (En inglés.)
• ¡La Asociación de Neuropatía tiene recursos sobre cómo unirse a un grupo de apoyo en su área, o incluso iniciar su propio grupo!
• La Fundación para la Neuropatía Periférica tiene gran información y recursos para el público, los profesionales de la salud pública, y los pacientes.

Éstos son algunos de los artículos que encontramos durante nuestra búsqueda de REHABDATA:

• ¿Se benefician los pacientes con neuropatía diabética desde el entrenamiento del equilibrio? Número de Acceso de NARIC: J63552.
• Hacer frente a la neuropatía dolorosa. Número de Acceso de NARIC: J59882.
• Evaluación de la recuperación de la neuropatía relacionadas con quemaduras por las pruebas electro-diagnóstico. Número de Acceso de NARIC: J56730.

Para llevar a cabo su propia búsqueda, por favor visite REHABDATA. Si usted tiene alguna pregunta, por favor no dude en utilizar nuestro servicio de chat para hablar sobre sus preguntas con un especialista en información.

May is Neuropathy Awareness Month

May continues to be a busy month for observances, including Neuropathy Awareness Month.

What is neuropathy?

Neuropathy, also known as peripheral neuropathy, is a result of nerve damage that can cause numbness and pain in your hands and feet. According to the Mayo Clinic, it can “result from problems such as traumatic injuries, infections, metabolic problems and exposure to toxins.” These problems/causes can include alcoholism, diabetes, infections, inherited disorders, trauma or pressure on the nerve(s), and vitamin deficiencies. Neuropathy can affect one or more types of nerves (sensory nerves, motor nerves, and/or autonomic nerves) and usually starts in the longest nerves (the ones that reach your toes). Some of the signs and symptoms of neuropathy include gradual onset of numbness and tingling in your hands or feet; burning pain; sharp, jabbing, or electric like pain; a lack of coordination; muscle weakness or paralysis; and/or bowel problems. See your doctor right away if you notice any unusual tingling, weakness, or pain in your hands or feet.

There are several goals in the treatment of neuropathy, including managing the condition causing the neuropathy and relieving the painful symptoms. There are many medications that can help manage the pain associated with peripheral neuropathy including pain relievers, anti-seizure medications, anti-depressants, or a lidocaine patch. Discuss with your doctor what the right medication is right for you and if you need one. Transcutaneous electrical nerve stimulation (TENS) may also help relieve symptoms. Also discuss this therapy with your doctor to determine if it is right for you.

Resources

To learn more about neuropathy and to find support groups in your area, please visit the following resources:

• The Mayo Clinic has a very informative section on peripheral neuropathy.
• The National Institute of Neurological Disorder and Stroke also has an informative page along with links to organizations that may be of help to you.
• The Neuropathy Association has resources on how to join a support group in your area or even start your own group!
• The Foundation for Peripheral Neuropathy has great information and resources for the public, healthcare professionals, and patients.

Here are a few of the articles we found during our search in REHABDATA:

• Do diabetic neuropathy patients benefit from balance training? NARIC Accession Number: J63552.
• Coping with painful neuropathy. NARIC Accession Number: J59882
• Assessment of recovery from burn-related neuropathy by electro-diagnostic testing. NARIC Accession Number: J56730

To conduct your own search, please visit REHABDATA.  If you have any questions, please feel free to use our chat service to discuss your questions with an information specialist.

Webcast: Secondary Conditions after SCI in a Population-based Cohort

The NIDRR-funded Rehabilitation Research and Training Center on Secondary Conditions in Individuals with Spinal Cord Injury will present “Secondary Conditions after SCI in a Population-based Cohort” Thursday, May 30th at 2pm EDT.

Lee Saunders, PhD, Research Assistant Professor, MUSC College of Health Professions and Co-Director of the Rehabilitation Research and Training Center on Secondary Conditions in Individuals with SCI will:

• Describe the assessment of secondary conditions in a population-based study
• Compare reported secondary conditions between a population-based cohort and a clinical cohort
• Discuss needs for future research.

No registration is required for this free webcast. Visit 
http://www.ccitonline.org/accordent/musc/053013
 on Thursday at 2 and select your preferred format (Windows Media Player or Real Player).

The presentation will be archived along with previous RRTC webcasts.

Temple University Collaborative on Community Inclusion Releases a New Monograph and Seeks Survey Participants

The NIDRR-funded Temple University Collaborative on Community Inclusion announces the availability of a new monograph focusing upon the intimacy concerns of individuals with mental health condition:

Addressing the Intimacy Interests of People with Mental Health Conditions: Acknowledging Consumer Desires, Provider Discomforts and System Denial

Acknowledging that sexual intimacy is a lifelong priority for all men and women, the monograph reviews current mental health research on the topic, the issues raised by men and women with mental health conditions with regard to the barriers they face in developing satisfactory intimate lives, and the uneasiness of most community mental health practitioners in discussing intimacy and sexuality with the people they serve.  The monograph, which offers initial recommendations for the mental health community, seeks to initiate a national dialogue on these issues.

This document and many other resources are available through the Temple Collaborative’s website.

Seeking University Faculty with Mental Health Issues

The Temple University Collaborative and Spelman College seek the participation of college and university faculty in a survey that aims to gather information about disclosures of mental health issues by faculty in academic settings. This is the first large scale survey that aims to gather information not only about how many faculty members experience mental health issues but also what that experience is like and how it affects their work lives.

The survey is comprised of various topics including diagnoses, hospitalizations, relations with co-workers, and experiences of disclosure at work. The survey team understands that some of these topics may be distressing or triggering, and have taken great care to ensure that the survey is as safe as possible. It is completely anonymous, and participants may skip any questions they wish.  Pilot testers have found the survey takes approximately 15 minutes but will vary by participant and how much open-ended information is included.

If you have any questions about this research project, please email the survey team at facultydisclosureproject@gmail.com, or call Dr. Margaret Price at 404/270-5579. You may also email facultydisclosureproject@gmail.com if you’d like to take part in the interview portion of the study but would rather not fill out the survey.

We are posting this information as a courtesy to our readers. We are not directly affiliated with this institution and have no further information regarding this opportunity. For additional information, please contact project personnel directly.

NIDRR Seeks Peer Reviewers for Field-Initiated Grant Competitions

This summer, NIDRR will conduct multiple field-initiated grant competitions in its DRRP and RRTC programs, and is seeking reviewers to participate in the peer-review process for these competitions.

If you would like to be considered for service as a reviewer in one or more of the 3-day teleconference reviews for these competitions, please submit your CV to NIDRR as soon as possible.

NIDRR is looking for multidisciplinary experts in the following broad areas.

Health and function outcomes of individuals with disabilities.  In this outcome area, NIDRR is looking for reviewers with expertise in traumatic brain injury, intellectual and developmental disabilities, as well as a wide range of other disability groups. NIDRR is running reviews in this outcome area on the following dates:

• August 7 – 9
• August 14 – 16
• August 21 – 23

Employment outcomes of individuals with disabilities.  In this outcome area, NIDRR is looking for reviewers with expertise in physical disability, as well as a wide range of other disability groups.  NIDRR is running reviews in this outcome area on the following dates:

• August 19 – 21
• August 26 – 28

Community living and participation outcomes of individuals with disabilities.  In this outcome area, NIDRR is looking for reviewers with expertise in intellectual and developmental disabilities, psychiatric disabilities, as well as a wide range of other disability groups.  NIDRR is running reviews in this outcome area on the following dates:

• August 14 – 16
• August 26 – 28

More detailed information about each of NIDRR’s specific competitions is available at 
http://www.ed.gov/grantapps
.

If interested, please send an updated and complete copy of your CV, including all relevant contact information, to theresa.sanagustin@ed.gov. In the email, please self-identify your area of expertise as well as your dates of availability.

Registration for Two IDeA Center’s Online Continuing Education Courses Now Available!

The Center for Inclusive Design and Environmental Access (IDeA) offers an online continuing education program.  The program is designed for anyone (e.g., advocates, builders/contractors, planners, architects, occupational and physical therapists, and policymakers) interested in learning about the universal design of places, products, and systems with a particular focus on the implications of a life span perspective.

The IDeA Center is now offering the next two courses in its online continuing education program. Course Dates: 6/03/2013 – 6/30/2013.  Registration is open and available until May 30^th, 2013 for the following courses:  UD and Housing 1:  Policy and Trends and Design for Human Performance.

Courses start June 3^rd, continue for four weeks until June 30^th, and are entirely online.

Each course costs $250 USD plus the cost of the textbook (available in e-book or hard copy and may be used over multiple courses).  AIA members receive 15 CEU Credits for the completion of the course(s).

For more information and course descriptions please visit
http://udeworld.com/training/continuing-education/course-description.html
.  You may register on the course list page by selecting “Add Course to Cart” on the Course List page. You can also register in-person, or you may print the registration form here (PDF/MS Word) and mail it with a $250 USD (per course) check or money order made payable to the IDeA Center.

For more information on the IDeA Continuing Education Program please visit
http://www.udeworld.com/training/continuing-education.html
.

For any additional questions please contact Jonathan White at jrwhite2@buffalo.edu.

 

1 in 133: May is National Celiac Disease Awareness Month

May is National Celiac Disease Awareness Month, but just what is this strange sounding disease, known as celiac sprue or gluten sensitive enteropathy (GSE)? Celiac disease is a genetically-based autoimmune disease that is triggered by the ingestion of gluten—a protein found in wheat, barely, and rye.  It is estimated that 1 in 133 Americans has celiac disease yet an nearly 83 percent of these individuals are either undiagnosed or misdiagnosed.  When an individual with celiac disease consumes gluten, he or she sets off an immune reaction that damages the villi (fingerlike projections) in the intestine, thus interfering with the absorption of nutrients.  In children this can exhibit as a “failure to thrive” and in adults can cause malnutrition (even in individuals considered “overweight”).

Classic symptoms of celiac disease include abdominal pain, chronic diarrhea or constipation (or both), unexplained anemia, bone or joint paint, and fatigue among other symptoms.  If left untreated, the decreased absorption of nutrients (malabsorption) that occurs with celiac disease can cause chronic and life threatening vitamin deficiencies that deprive the brain, peripheral nervous system, bones, liver, and other organs of vital nourishment resulting in iron deficiency anemia, early onset osteoporosis, and increased risk of intestinal/gastric cancers.  Celiac disease is associated with various autoimmune disorders including rheumatoid arthritis and lupus as well as other syndromes such as fibromyalgia (May is also fibromyalgia awareness month) and chronic fatigue.  There is no pharmacological cure for celiac. The only treatment is a strict, lifelong gluten-free diet.

In addition to celiac disease there is a condition known as non-celiac gluten sensitivity (also known as NCGS or gluten sensitivity) in which the bodily reaction to gluten causes symptoms similar to celiac disease without causing the damaging effects to the intestinal villi.  The exact cause of NCGS is unknown and there is currently no approved test to diagnose it.  The recommendation is that these individuals also follow a strict, lifelong gluten-free diet.

How is celiac disease diagnosed?

Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. Celiac disease can be confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, inflammatory bowel disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease has long been underdiagnosed or misdiagnosed.  Currently there are two methods for testing for celiac disease and gluten intolerance:  blood test for higher levels of certain autoantibodies and a biopsy of the small intestine by endoscopy.  It is important to note that before being tested, one must continue to eat a diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present.

What is does a gluten-free diet consist of?

There are many naturally gluten-free foods such as fresh fruits, vegetables (with no sauces added), nuts, beans and seeds, fresh fish, and meats (without gravies or sauces added).  Additionally there are some grains that are naturally gluten-free such as quinoa, teff, millet, amaranth, and rice, as well as many cheeses (but not all diary/cheese products). With the rise in diagnoses of celiac disease and gluten intolerance, more stores are advertising and carrying “gluten free” products.

Careful label and menu reading is strongly recommended. Individuals with celiac disease must be very careful when consuming processed foods or eating out at restaurants.  Even the smallest amount, 24 to 30 milligrams of gluten — about 1/145th of a slice of conventional bread (about the size of a crumb) — can be enough to cause intestinal inflammation and a “flare” of symptoms.  And it isn’t just food that individuals living with celiac have to worry about: supplements and medications, cosmetics, toothpaste, and various other items may contain “hidden” non-active ingredients such as gluten.

Living with an allergy and/or sensitivity to gluten can be major life adjustment but there are many online resources available for further information, current research, support, and even recipe sharing to make the transition easier!

Celiac Disease Foundation (CDF)
CDF is a non-profit, public benefit corporation dedicated to providing services and support regarding celiac disease and dermatitis herpetiformis, through programs of awareness, education, advocacy, and research.

National Foundation for Celiac Awareness (NFCA)
Through empowerment, education and advocacy, the National Foundation for Celiac Awareness (NFCA) drives diagnoses of celiac disease and other gluten-related disorders and improves the quality of life for those on a lifelong gluten-free diet.

Celiac.com

Celiac Disease Awareness Campaign from the National Institutes of Health
The Awareness Campaign provides current, comprehensive, science-based information about the symptoms, diagnosis, and treatment of celiac disease, also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.

Center for Celiac Research & Treatment
The Center for Celiac Research is engaged in clinical care, diagnostic support, education, and clinical and basic science research in celiac disease.

National Digestive Diseases Information Clearinghouse (NDDIC) Celiac Information Page

Living with celiac disease and gluten intolerance is certainly easier than it was many years ago and with continued awareness and education people living with this disease can live, eat, and enjoy food with greater acceptance, understanding, and ease.