ACHIEVA and HealthMeet

 Your Health Matters

Volume 3 Issue 4                                                                                       April 2014 Edition




In This Issue
Wellness Tips
A Wellness Environment
Webinar: State of Health & Wellness
7 Ways to Eat Healthy as You Age
Health Literacy
Obesity Risk for Those with Autism
Achieving Healthy Weight
Prescription Drug Label Information
Cranberries to the Rescue!
The Gift of My Disability
Website to Assist Physicians Communicate & Work with I/DD
Data on Racial & Ethnic Disparities
HealthMeet Calendar of Events

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Currently in the United States there are approximately 10.2 million people with special health care needs (SHCN) under 19 years of age.  Each year, 750,000 adolescents with SHCN cross into adulthood.  Healthcare transition - the process of moving from pediatric medicine to adult-oriented medicine - is a necessary process for these youth.  Transition can be difficult when a child with complex, chronic needs has been cared for by the same pediatric team for many years, especially when the team may have been credited with saving the child's life and supporting the family through very difficult moments. 


ACHIEVA has written a report titled, Transition from Pediatrics to Adult Medical Systems for Young Adults with Disabilities or Special Health Care Needs, that takes a closer look at the issues facing families and providers. 


Click here or on the report to view.

Wellness Tips

From Melissa Allen, ACHIEVA's Disability Healthcare Project Coordinator


This summer, ACHIEVA's HealthMeet partner, Eruption Athletics, will do a presentation at the National Down Syndrome Congress in Indianapolis, IN.  


We asked them for their top wellness tips:    

  *  Get 8 to 10 hours of sleep each night
  *  Exercise at least 30 minutes each day to stay healthy
  *  Drink between 8 and 12 glasses of water daily
  *  Do stretching to maintain your flexibility
  *  Eat well balanced and healthy meals

A Wellness Environment

From Melissa Allen, ACHIEVA's Disability Healthcare Project Coordinator
Information taken from Health Matters: The Exercise and Nutrition Health Education Curriculum for People with Developmental Disabilities 


Your health matters and sticking with an exercise program and eating healthy foods is very important.  Meeting your wellness goals can make you feel good about yourself and keep you motivated to continue with your program.


To stay interested in exercising, we can keep things at work that remind us to exercise.  Keep a set of exercise clothes conveniently located so you can exercise whenever you have the time before or after work.  Wear or bring gym shoes to work so you can walk at lunch time.  Use your calendar to schedule exercise.  Get an exercise partner who will motivate you that it is time to exercise.


Remember, there are no strikeouts in exercise.  No matter how long it has been since you last exercised, you can improve your health by getting back into the habit of exercise.                                                                                             

Webinar: State of Health & Wellness

From The Arc of the United States


Wednesday, April 23, 2014
2 - 3 p.m. EDT

Presenter: Lynda Lahti Anderson, University of Minnesota's Institute on Community Integration  


Historically, people with intellectual and developmental disabilities (I/DD) have experienced health disparities related to many different factors including: lack of access to care, inadequate
number of health care providers and social determinants to name just a few.  Recently though, a greater effort has been made to identify and address such disparities through programs that help encourage healthier lifestyles and educate health professionals.  In this webinar, Lynda will identify ways to improve methods of addressing the health care needs for this population through specialized programs and cost-effective methods.


Register here. 

7 Ways to Eat Healthy as You Age

From Team 


Nutrition needs change as we age.  The following articles and videos provide good information about health eating.   


Articles to read:

Videos to watch:

 Heath Literacy

From Regional Health Literacy Coalition


The healthcare system is very complex.  Most people in the United States have difficulty understanding and using currently available health information and services.  This is even harder for people with disabilities.


Health literacy must be part of the discussion as we transform health care.  Safe, patient-centered and equitable care can not be delivered if consumers cannot access services or make informed health care decisions.


Click here to learn more.

 Obesity Risk Double For Those With Autism 

From Disability Scoop


New research from the U.S. Centers for Disease Control and Prevention suggests that adolescents with developmental disabilities are significantly more likely than others their age to struggle with weight and those with autism are at greatest risk.  Overall, obesity is 50 percent more common in individuals ages 12 to 17 with developmental disabilities as compared to typically-developing adolescents, according to findings published recently in the Maternal and Child Health Journal. That risk increases to more than double when looking specifically at those with autism.


Read more.

Achieving Healthy Weight for People with Disabilities

From CDC-NCBDDD (National Center on Birth Defects and Developmental Disabilities)


There are five new issue briefs that describe what people and organizations can do to help combat obesity among people with disabilities and assist them in achieving healthy weight and an improved quality of life. CDC's Division of Human Development and Disability at the National Center on Birth Defects and Developmental Disabilities released the briefs, each targeted at specific audiences including: communities, health departments, employers, schools and healthcare professionals.  


Click here to view all of the issue briefs at People with Disabilities: Healthy Weight Issue Briefs

Increased Availability of Accessible Prescription Drug Label Information


The National Council on Disability (NCD), an independent federal agency that advises the President, Congress and other federal agencies on disability policy, welcomes the settlement agreement announced March 18, 2014 between CVS/pharmacy and the American Council of the Blind, the California Council of the Blind and the American Foundation for the Blind that will make 'ScripTalk' talking prescription labels available to online and mail order customers across the United States.  CVS customers who are blind or visually impaired may obtain a free device to read the labels.

"Accessible prescription labels equal independence," said NCD's Janice Lehrer-Stein.  "We applaud this agreement and look forward to the day when full inclusion and accessibility with the medications we take becomes the new standard. The commitment to accessible label information by CVS is an important and necessary step forward toward ensuring safety for millions of prescription drug users including seniors and persons with vision-related disabilities."

"No one should have to risk injury or worse when taking prescription medications," said NCD Chair Jeff Rosen.  "As the agreement between CVS, the American Council of the Blind, the California Council of the Blind and the American Foundation for the Blind illustrates, the technology to make talking prescription labels accessible to customers with disabilities is increasingly available and should become the standard used by all pharmacy vendors."

A company news release reported: "CVS will also continue to meet with the organizations to discuss other alternative methodologies to improve accessibility to prescription label information and drug monograph information for patients and customers with visual impairments."

Background on Accessible Prescription Drug Labels:

In July 2012, President Obama signed the Food and Drug Administration (FDA) Safety and Innovation Act (s.3187) into law requiring the United States Access Board to convene a working group of consumer and industry stakeholders to compile best practices for making information on prescription drug container labels accessible to people who are blind or visually impaired or who are elderly.  The 18-member working group included representatives of national organizations representing individuals and seniors who are blind or have low vision and pharmaceutical companies and industry groups.  Best practices for pharmacies to use, including specific directions for different formats or options, were compiled by the working group and submitted to the Access Board.  The National Council on Disability is conducting public awareness around the findings of the report.

Cranberries to the Rescue! 

From the Wellesley Dental Group


Cranberries can be a delicious snack on the go, and, in the form of juice, can be a great way to quench your thirst.  Along with being a healthy component to a meal, studies have shown that cranberries may very well keep oral thrush away!


Oral thrush is a common condition where a fungus called Candida albicans can be found on the lining of your mouth.  Oral thrush can leave white lesions, usually found on the tongue or inner cheeks.  These lesions can be very painful and can bleed when scraped.  If oral thrush is not treated, it can spread to the roof of the mouth, the tonsils and even the back of the throat. 


So what exactly causes thrush?  Small amounts of fungus can be found in the mouth, digestive tract and skin of completely healthy people.  Fungus is usually kept in check by bacteria and microorganisms found in the body.  However, stress and certain medications can cause fungus to grow.


Oral thrush can affect all age groups including babies, who can pass the infection onto their mothers during breast-feeding.  Those who smoke or wear dentures are also at a higher risk of developing thrush.

Read more.

The Gift My Disability Gave Me

From Huffington Post, Article by Trisha Lynn Sprayberry 


There are a lot of challenges that come with being disabled.  We all have our ups and downs.  And it may seem like because I have the extra burden of experiencing a disability like Facioscapialhumeral (FSHD) Muscular Dystrophy, it would be a challenge too daunting to fathom, let alone one that could be dealt with as anything of a good thing.


(FSHD) is a progressive, inherited genetic disease.  That means that over time, the disease will get worse.  And having FSHD, that means in simple terms, the muscles weaken and atrophy more and more over time, leading to the inability to run, or raise your arms above your head.  


Such a future sounds so bleak when it's put that way.  But it's only perspective.  One that is unfortunate and is the founding of the stereotype that envelopes us who do suffer of this disease. It's no wonder why it's hard for others unfamiliar to see beyond that.  But, it's a view that is just a negative and narrow way of seeing someone with FSHD.


Read more on Trisha's journey.

Website Helps Primary Care Physicians Communicate & Work With I/DD

From the National Association of State Directors of Developmental Disabilities Services (NASDDDS)


"Many doctors have little experiencing treating patients with intellectual and developmental disabilities (I/DD)," according to an article in the Tennessean.  People may not be able to articulate how they feel or to fully understand a doctor's questions.  A new website, aims to provide primary care physicians with tools for communicating with and treating people with I/DD.


The website gives doctors guidance in how to interact with patients and assess their physical health and behavioral issues.  The site provides checklists for problems associated with specific diagnoses.


It is also intended to be a resource for people with I/DD and their caregivers, who can share the guidelines with physicians or follow the tips for communicating with medical professionals.


Click here to read complete article. 

New NCI Data Brief on Racial and Ethnic Disparities 
in Healthcare Utilization

From the National Association of State Directors of Developmental Disabilities Services (NASDDDS)


A new data brief related to the racial discrepancies in the utilization of healthcare services experienced by adults with intellectual and developmental disabilities (I/DD) was recently released. The data brief begins with a description of significant differences among racial and ethnical groups in demographics such as age, mobility level, level of disability and residence type.  The data brief then goes on to examine the difference in preventive healthcare use.


For the purposes of the analyses used in this data brief, only individuals who were identified as Non-Hispanic African American, Hispanic and Non-Hispanic White were included in the sample. The final data set includes data for 11,199 people. 


Click here for a summary of the findings and to read the complete article. 

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Nancy Murray
President, The Arc of Greater Pittsburgh
serving Allegheny, Beaver and Westmoreland Counties
(412) 995-5000 x424