Breast Cancer Doesn’t Discriminate!

Breast cancer is second leading cause of cancer deaths among women.  However, if found early breast cancer is also one of the most treatable cancers.  These statics relate to ALL women, whether you have a disability or not, which is why it is so disconcerting that studies have shown that women with disabilities are much less likely to receive regular mammograms.  Receiving routine check-ups and screenings are essential to finding these types of cancers early on when they are treatable.  It is recommended that women over the age of 40 receive a mammogram every year.  If you are a woman below the age of 40, but have a history of breast cancer in your family it is also advised that you start getting screened earlier.

There are no proven reasons as to why women with disabilities have less frequent screenings, but many times we are so focused on “treating the disability” that annual check-ups and appointments to screen for common diseases and conditions can get pushed to the side as less of a priority. Also, sometimes medical facilities and the equipment used for screenings such as mammaograms are not always as accessible as they need to be.

Educating women with IDD, families and physicians is essential to help raise awareness of the importance of early detection.  To lower your risk of getting breast cancer it is important to control your weight and exercise, limit the amount of alcohol you drink and know your family medical history.  If you provide services to people with disabilities, teaching those you care for to perform an at home self breast exam can improve the changes of discovering  lumps orchanges, such as tenderness, skin texture and color or enlargement of pores, that can indicate a problem.

HealthMeetPrograms, such as The Arc’s HealthMeet project and the Women Be Healthy program, offer information and resources for women with disabilities and their caregivers to learn more about the facts behind the need to receive these screenings.  Visit The Arc’s HealthMeet Webinar page to view our past webinar detailing results from the Women Be Healthy study.  Remember to advocate for the women in your life by supporting them to understand and receive these preventative screenings.

Some Children with I/DD at Greater Risk from Flu

Young woman with the flu

Photo via nataliejohnson (Flickr)

The Centers for Disease Control and Prevention (CDC) just published a report on the results of an on-line study they did during the 2011-2012 influenza season regarding vaccination rates for children with neurologic and neurodevelopmental conditions.  Shockingly, the report indicated that only HALF of children surveyed were vaccinated or had an appointment to be vaccinated and out of those children who indicated they had an intellectual disability it was only slightly better at 52%.  Numbers like this are alarming due to when you consider the 2009 flu outbreak in which 336 children died. Of those, 146 were children with neurologic or neurodevelopmental conditions (76% indicating they had an intellectual disability).

The majority of families rely and trust their physician to provide them with information, expertise and advice on what is best for their child to keep them healthy. However, the study also found that even after this outbreak occurred many physicians still do not rate children with an intellectual disability as being at a high risk and needing the vaccination.

According to the CDC bulletin a child with an intellectual or developmental disability that requires special needs is at a higher risk than others due to the fact that they are more susceptible to developing complications and infections from the flu virus. These complications can include pneumonia, bronchitis, and can also increase the effects of already current chronic health problems. These complications can lead to hospitalization and in severe cases death.

While every parent has the right to choose whether to get their child vaccinated or not, studies like this will help to increase awareness of prevention and knowledge of parents and physicians to help them to make more informed decisions.

As fall rolls in and the flu season quickly approaches you can visit the HealthMap Vaccine Finder if you need help finding a location in your area to get vaccinated.

Take Charge of Your Health Online

Self-Advocacy OnlineBy Kerry Mauger, Training Coordinator, The Arc

The Arc’s HealthMeet initiative has partnered with The University of Minnesota to develop two educational modules about exercise and wellness to be featured on an innovative new website called Self-Advocacy Online. This site is a great resource for people with an intellectual disability to gather information, find self-advocacy groups in their area, learn new ideas, and hear stories from other self-advocates just like them who have similar fears, dreams and aspirations in life.

Now on the site, self-advocates can access lessons to help guide them in living a healthier lifestyle and finding ways to become more active and increase their fitness level.  These digital lessons are created with input from a team of self-advocates to ensure that all the material included in them is accessible to individuals with all types of disabilities.  Each module uses accessible language, has a self-advocate speaking for the audio portion and uses entertaining pictures and short video clips to reinforce the messages in the lessons.

The first module, “Taking Care of Myself,” is an overview of what it means to live a happy, healthy life.  It explains the big-picture view that to be healthy and happy it means taking care of your body as well as your mind, and learning to develop healthy relationships with people that support you.  The second module, “Exercise,” is all about the different types of exercise (cardio, strength and stretching) that your body needs in order for it to be healthy. It explains why it is essential that we exercise, how many times a week is recommended and uses short video clips to show different exercises that you can do along with the instructor.

These resources help teach healthy lifestyle lessons and are available for self-advocates to watch and refer back to at their own pace as often as they like.  Learning is a process is that never stops.  Through the HealthMeet project, The Arc plans to build two additional healthy lesson modules in the upcoming year to help empower self-advocates to take charge of their own health and wellness.  Resources like Self-Advocacy Online are a stepping stone to help individuals with disabilities live a more independent healthier life.

July is National Park and Recreation Month – And a Great Time to Start Exercising

Boy outsideOne great way to improve your health is to go outside and get moving.  During the month of July, parks all across the United States will be celebrating Park and Recreation Month by holding fun events open to everyone.  By taking part in these events, you will not only have a good time but you can also improve your health by exercising.

Exercising can help you stay in shape and keep a healthy weight.  But, it also has other benefits. Activities like horseback riding can help improve coordination and physical fitness. Also, exercise can also help prevent heart disease, reduce risk of certain types of cancer, and improve mental health.  Whether you enjoy playing basketball, practicing yoga, biking, swimming, or any other physical activity, staying active helps improve your health.

But, how much should you exercise per day?  All adults – those with and without disabilities – should exercise at least 5 days a week for 30 minutes to stay healthy.  Children should exercise at least 5 days a week for 60 minutes a day.  While people with and without disabilities can do many physical activities, everyone should make sure to exercise at a safe level so they do not strain or hurt themselves.   There are also resources specifically for people with disabilities that you can use to get ideas of how to stay active and healthy.  The Arc’s HealthMeet program also promotes good health among people with intellectual and developmental disabilities with local health assessments, webinars on health topics, and other information available online.

With so many different fun events and healthy activities available, July is the perfect month to visit your local park or recreation center.  For more information about how to get to a park or how to get around a park, contact your local park or find information about accessibility for people with disabilities online.

With this information in mind, we hope you can make the most of your summer and get outside!

Mental Health and How You Can Help

HealthMeetOn June 3rd, President Obama held a conference at the White House about mental health.  Mental health issues are a national policy concern, but it is important to also think about mental health in your life too.  By seeking support and fighting the stigma, or embarrassment, about psychiatric disabilities, you can create a healthier world for yourself and others.

Anyone can have mental illness and around 25% of adults in the United States have a mental health disorder. Mental health is also a big concern for people with intellectual and developmental disabilities (I/DD). Some professionals may be unable to correctly diagnose psychiatric disabilities with people who have I/DD so these individuals may not receive the care they need.  Untreated mental illness alone makes you less healthy and it is also associated with other health issues like diabetes, cancer, and heart disease. The Arc’s HealthMeet project works to improve physical health for people with I/DD, but you can contribute too by creating a healthier conversation about mental health.

One of the bravest steps to improve health is getting help for living with mental illness. There are many mental health resources available for you or someone you know. If you are thinking about hurting yourself or committing suicide, call the National Suicide Prevention Hotline at 1-800-273-TALK. If you are worried about someone you know, stay with them and urge them to seek help, either at a hospital or from a mental health professional. For other support, like finding mental health services, the National Institute of Mental Health website has many resources listed under “Finding Health.”

In addition to encouraging others to get help, you can also help change how we talk about mental health.  Mental illness can affect anyone, but it is often seen as something shameful. This makes it harder for many people to get help.  By talking in an open and non-judgmental way about mental health, we can all work to create the healthier world envisioned by HealthMeet and The Arc.

HealthMeet® In Action – In 5 States, Changing Lives

Young girl with audiologistBy Ann Cameron Williams, Ph.D., Senior Executive Officer, Research and Innovations and Karen Wolf-Branigin, Senior Executive Officer, National Initiatives

Many of us at The Arc at local, state, and national levels get up and go to work every morning to make a positive difference for people with intellectual and developmental disabilities (I/DD).  It’s not only what we do, it’s who we are.

When I have the opportunity to go visit local and state Chapters, I am usually stunned by the creativity and sheer genius that is activated on behalf of people that are in need of a better solution.  This past month, The Arc US invited five Chapters from the five states that are engaged in our HealthMeet®: Promoting Health for People with Intellectual Disabilities that is funded by the CDC, to share with us their approaches to improving health in their communities.  As we listened, once again, I found myself marveling at the depth of understanding and quality of response that our Chapters deliver.

For example, in Massachusetts, The Arc of Massachusetts is working in collaboration with the health providers from the Boston Medical Center, the Developmental Disabilities Nurses Association and Simmons College to conduct health assessments. They translated the HealthMeet flyer and engaged in specific outreach efforts in Boston’s Portuguese community. In addition, The Arc of Massachusetts is coordinating a four-week Health and Nutrition program for people with intellectual/developmental disabilities

In Pennsylvania, ACHIEVA, The Arc of Greater Pittsburgh, recruited physicians, medical residents and students, nurses, retired nurses, nursing students, paramedics, physical therapists and speech/language pathologists to conduct health assessments at ACHIEVA programs, community recreation programs and community health fairs. ACHIEVA created and produces an e-newsletter, Your Health Matters, with articles on policy, applied research, services and training events related to HealthMeet events and health and intellectual/developmental disabilities.

In North Carolina, The Arc of North Carolina is building the HealthMeet program within their local chapters with 8 sites across the state. Their goals are to work in rural and urban areas, serve as a catalyst to build and strengthen partnerships, bring value to the membership and let chapters shine. They have created an infrastructure with a list serve, real-time contact lists, and shared group workspace to share tools and processes. Significant community involvement from a plethora of stakeholders is an important part of the North Carolina model.

The Arc of New Jersey is working with The Arc of Atlantic County, The Arc of Camden County, The Arc of Essex County, The Arc Gloucester, and The Arc of Monmouth to implement HealthMeet events. The chapters complete assessments as part of their day program services and at ambulatory care centers. Publicity efforts have included print and broadcast media, including guest appearance on a local radio show, podcasts and interviews with local television stations.

And in San Francisco, The Arc San Francisco hosts Wellness Wednesdays, an organized drop in health assessment for the people they serve. The program is held on site so it’s easily accessible to individuals, allows for private screenings, and is easy to quickly set-up/breakdown. The Arc San Francisco developed their own registration system and uses Nurses and volunteers to conduct the assessment. In addition, they are developing processes to identify potential health issues on an ongoing basis by training Direct Support Professionals to be aware of hidden health issues.

In each state, Chapters are facilitating life-changing events that are helping people with I/DD identify health concerns and training medical health professionals and students to become more familiar with interacting with people with disabilities.  Each Chapter has developed a customized approach, which is one of the hallmarks of our responsive network.  The Arc of the United States is also helping with systems level changes through innovative and timely training via our HealthMeet webinars, partnering with the University of Minnesota to advance self-advocacy training in health promotion and other essential life areas at www.selfadvocacyonline, and advancing in-community health promotion program training.

This effort is bringing into clear relief the chronic and often unattended health care needs of the people we serve.  Who is looking?  The CDC is, for one.  The health systems of the five states in which HealthMeet runs are, for another.  And the thousands of medical health professionals that are contributing their time and interests into this effort are, as well.  We are changing the world.

This thing is, health is – and should be considered – a civil right.  Chapters of The Arc are helping to get this word across to many who may be hearing this message for the first time.  Simply stated, with gratitude:  thank you.

The Best Tan Is No Tan – Learn to Protect Your Skin!

Woman applying sunscreen

Photo by Bill Branson, courtesy of the National Cancer Institute

May is here and that means Memorial Day Weekend lies ahead, which for many is the kick off for beach trips and afternoons spent by the pool.  With all this fun in the sun also comes the responsibility of making sure that we protect our skin from harmful UV rays, which is why May is also Skin Cancer Awareness Month.  Even though skin cancer is the most preventable form of cancer, it is still the most common cancer in the United States with 1 in 5 Americans developing skin cancer within their life.

Being informed of the facts that can make you a higher risk for skin cancer and effective ways to help prevent and spot skin abnormalities can make a huge difference.  The number one way to prevent skin cancer is to stay out of the sun, but that’s very hard to avoid all the time.  When the sun’s UV rays are the strongest (between 10am and 4pm) it only takes 15 minutes of exposure for your skin to burn.  So when you have to be in the sun for extended periods of time it is essential to apply sunscreen that is at least SPF 15 or higher and a lip balm with an SPF about 30 minutes before going out and generously reapplying every 2 hours.  When possible, try to seek out some shade or wear a hat to help shade your face.  Certain factors such as fair skin, blue eyes, blonde hair, family history of skin cancer and freckles are all indicators that you might be more susceptible to burn easier.

The most common types of skin cancer are non-melanoma, such as basal cell and squamous cell skin cancers, which are usually not fatal.  However, without spotting the signs related to these types of cancer early on and treating it you could be at risk for them developing into melanoma.  Melanoma is the most serious type of skin cancer and the leading cause of death from all forms of skin cancer, so early detection could be lifesaving.

Individuals with disabilities are less likely to receive routine check-ups, have fewer doctor visits and be less aware of their own health disparities, so it is important that they are educated to know to look for moles, lesions and scars on their skin that could be cancerous and to say something about it right away. The ABCs for teaching what to look for are easy:

Abnormality – is one side shaped differently than the other
Border – is it irregular
Color – various shades of tan/brown, black or red
Diameter – bigger than a pencil eraser
Evolving – has it changed shape or size

Being attentive to any skin abnormalities and making sure to use sunscreen and avoid the sun during its peak hours are all steps to protecting your skin from getting damaged.  It’s essential to make sure you and your loved ones regularly check themselves for possible cancerous moles/spots and to get routine check-ups.  Through its HealthMeet project, The Arc is offering free non-invasive health assessments to individuals with disabilities in 5 pilot sites across the US to help increase awareness of these types of preventable disparities.  Contact your local chapter of The Arc if you need help finding a doctor or dermatologist that could help you and visit the National Council for Skin Care Prevention for more information and tips on sun protection.  And don’t forget the sunscreen when heading outside this summer!

Working Toward Healthier Lives for People with I/DD

HealthMeetThe Arc of United States recently launched its new HealthMeet® project, funded through a 3-year, $1 million cooperative agreement with the Centers for Disease Control (CDC). ACHIEVA (The Arc of Greater Pittsburgh) has joined four other chapters of The Arc nationwide, to pilot local health care screenings, provide assistance with health care navigation and offer health promotion activities for people with intellectual and developmental disabilities (I/DD).

“We are extremely excited to be chosen to partner with The Arc of the United States, The Arc of Massachusetts, The Arc of New Jersey, The Arc of North Carolina and The Arc of San Francisco to be part of this project and provide free health screenings across our region,” says Nancy Murray, President, The Arc of Greater Pittsburgh.  “These screenings will allow us to provide health screenings, collect data on the health of people with I/DD and provide training and information on healthy lifestyles.”

Screenings began in March. “ACHIEVA has gotten off to a great start by screening our first 46 individuals and we have collected valuable health data during the screenings,” says HealthMeet screening coordinator Melissa Allen. “We are providing wellness informational brochures and encouraging healthy lifestyles by giving participants a gift bag at the end of their screening.”

In addition, ACHIEVA worked with Eruption Athletics, a personal training program for men and women with disabilities, and they are joining ACHIEVA’s HealthMeet events to offer fun fitness activities and exercise guidance to those that participate.  Eruption Athletics is dedicated to providing athletic trainer-certified programs to develop strength, flexibility and wellness with a focus on men and women with disabilities. This was a unique way for ACHIEVA to partner with a business in their community to enhance the HealthMeet event and put a fun and interactive spin on the benefits of adopting a healthy lifestyle for their participants.

ACHIEVA supports the HealthMeet effort with a bi-monthly electronic newsletter that provides health and wellness information and information about access to healthcare. For more information about HealthMeet you can visit www.thearc.org/healthmeet. If you want to receive ACHIEVA’s HealthMeet electronic newsletter please contact Melissa Allen at mallen@achieva.info.

March is National Nutrition Month

By Kerry Mauger, The Arc’s HealthMeet Team

HealthMeetMarch is National Developmental Disabilities Awareness month and it is also National Nutrition Month®. The Academy of Nutrition and Dietetics created an annual campaign to help educate and inform people all over the US about the importance of creating healthy eating habits, making more informed food choices and increasing physical activity. This is especially important for individuals living with an intellectual or developmental disability. It’s been shown that individuals with a disability have a higher prevalence for obesity, which can lead to diabetes, cardiovascular disease, high blood pressure and other preventable health issues.

Learning more about nutrition and what types of foods to eat can make a huge impact in your overall health. By teaching and using the MyPlate methodology, individuals can get a visual perspective of the types of foods and portions that they should be consuming daily. To help show different portion sizes that are appropriate for certain foods you can compare them to household items that the individual will be able to relate to.  For example -knowing that a 3-4oz serving of chicken should be about the size of a deck of cards or half a cup of pasta is the size of a baseball will help to put portion sizes into perspective for future meals.

Small changes to the foods you consume can also make a significant imprint in your health over time – switching to skim milk from 2%, replacing sour cream with Greek yogurt, eating whole grain bread instead of white bread and controlling sodium intake are all very simple steps to take to making healthier eating habits. Many resources are available through The Arc’s HealthMeet project and their webinars that feature presentations by nutritionists, dieticians, nurses and more to help individuals to be more educated about the foods they chose, portion sizes and ways to improve fitness levels to help reduce obesity and many of its related preventable illnesses.

The Arc joins Million Hearts™ to Help Save Lives from Heart Attacks and Strokes

Heart attacks and strokes are the 1st and 4th leading causes of death in the United States each year.  Everyday 2,200 people die from cardiovascular disease in America.  In addition heart disease and stroke are also among the leading causes of disability in our country, with more than 3 million people reporting serious illness or a decrease in the quality of life afterwards.

Many people may not even be aware that they are at a high risk for a heart attack or stroke.  The Arc has taken the pledge to help increase awareness of cardiovascular disease by partnering up with Million Hearts.  Million Hearts was created in attempt to prevent 1 million heart attacks and strokes over the next five years.  The Centers for Disease Control and Prevention (CDC) and Centers for Medicare and Medicaid Services are co-leading this initiative, which hopes to raise awareness by educating people on the associated risks of heart attacks and strokes, encouraging exercise, and maintaining a healthy diet to reduce cholesterol and sodium intake. By learning the “ABCs” of preventing heart disease and stroke (Aspirin Therapy, Blood pressure control, Cholesterol management and Smoking cessation) we can empower individuals to make healthier choices to reduce these occurrences. Million Hearts is bringing together a variety of public and private sectors to help spread their educational campaign across the country and find innovative ways to use technology and information sharing to promote these efforts.

Individuals with an intellectual or developmental disability are at an even higher risk than the rest of the population for heart attacks and stroke.  It is shown that individuals with I/DD are less likely to maintain routine check-ups, receive the medical attention or medicines they need to sustain their health or have enough health knowledge to be aware of their own health disparities to make healthier choices. The Arc’s HealthMeet project is helping to educate and promote healthy behaviors, by providing free health assessments, educational webinars, trainings, and activities to increase fitness in hopes to create a change in individual’s lifestyles leading to fewer instances of heart attacks and strokes.  Log on to The Arc’s HealthMeet page on our website, www.thearc.org, to learn more about the project and access health resources that can help you put your heart’s health into your own hands.