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Seizure Treatment for Individuals With IDD

It’s not shocking news to hear that individuals with disabilities have more health issues than the general population. Unfortunately, individuals with intellectual disabilities also have an increased risk of developing epilepsy. According to the Epilepsy Foundation Metropolitan New York, about 30% of children with epilepsy have another developmental disability, and the risk of children with developmental disabilities below the age of 5 years old having a seizure is 4 times higher than other children at that age. As adults, 10-20% of individuals with intellectual and developmental disabilities (IDD) also have epilepsy and for those individuals with and IDD and cerebral palsy it increases to 50%. The reasoning behind this is uncertain, but it could be a because of the underlying neurodevelopmental condition that is already in existence.

There are many different treatments available to help control or reduce seizure activity within the body. The majority of people with epilepsy take daily medications to try to control activity. For individuals with disabilities it’s just one more mediation to be added with more adverse side effects and behavioral changes. The side effects of these medications can also be difficult to determine with non-verbal patients. Behaviors and mood changes might be mistakenly linked to the disability instead of the seizure mediation or they can go unnoticed by staff/caregivers.

Other forms of therapy are the vagus nerve stimulation and a Ketogenic diet. The Ketogenic diet is a medically prescribed strict diet individuals can go on that is high in fat and low in carbohydrates and proteins. It is not completely certain how and if this diet will work (can vary by person), but it creates a metabolic change that can alter brain chemistry and limit frequency of seizures. The stricter you follow this diet the more effective it is said to be. This diet can be a struggle for individuals with IDD that may already have other food issues present – strong dislike of smells, tastes, etc. The vagus nerve stimulator (VNS) is a small device implanted into the shoulder area that sends electrical impulses up the vagus nerve in the neck to stimulate the brain at set intervals. These impulses help to regulate the electrical activity in the brain that causes seizures. The VNS can also be paired with a magnetic device that can turn it on when an individual feels a seizure coming by holding it up to the chest area where the VNS is implanted.

The best way to try to control seizures is to be aware of all the facts surrounding them – times of day they occur, how long they last, frequency per day, possible triggers (missed medication, overtired, dehydrated, alcohol use) and any feelings/effects afterwards. The more information you can present to your physician the better they will be able to understand the big picture of what’s happening and provide better care for the individual. Websites such as, SeizureTracker.com help to record all this information in one secure place, so you can easily document the most detailed information possible. Learn more about SeizureTracker.com through our webinar with the site’s co-founder, Rob Moss.

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Diagnosing Dementia Is Difficult in People With IDD

Studies have shown that individuals with intellectual disabilities are living longer these days with many living well into their 50’s and 60’s and beyond. This is most likely due to new medical advances and educational programs that help empower individuals to live healthier lifestyles. While this is remarkable news, it is also directly correlated to the increased rate of dementia in individuals with IDD. While most of the general population develops Alzheimer’s after the age of 65, many individuals with IDD (especially Down syndrome) are more likely to develop Alzheimer’s earlier on in life, which is called Early-Onset Alzheimer’s. Some may even develop it as early as their forties.

Individuals with Down syndrome are at a higher risk than other individuals with disabilities for developing dementia. As we know, individuals with Down syndrome have an extra copy of the chromosome 21. This specific chromosome contains a gene that produces a protein that can cause brain cell damage. Since these individuals have an extra copy of this gene they are producing more of this harmful protein in their bodies. Studies have shown that almost all individuals with Down syndrome will develop the same changes in the brain that are associated with dementia; however not everyone will develop the symptoms of the disease.

Diagnosing dementia in an individual with IDD can also be a difficult situation because many individuals may have trouble answering the testing questions that could be used to diagnose it. There are also few other assessment tools developed for individuals with IDD. In addition, some behavioral issues that individuals with IDD can have may also be confused with signs for dementia when the issue is rooted in another problem. Starting to rule out all other possible options for the change in the individual’s behavior is a good start to determine what the real concern is.

We recently talked to The Arc’s Board President, Nancy Webster, who has had some personal connections with dementia in her family, too. Nancy’s concern is that families don’t know where to turn to get information on dementia, what signs to look for, and how to get the appropriate testing. As caregivers and family members with an individual with a disability, it is important to be aware of the individual’s whole situation to better advocate for their needs. Nancy believes “this advocacy is not solely on The Arc and its members, and on families, but also on general practitioners too – as they are the first line of people who tend to see our population”. Nancy’s hope is that through The Arc’s HealthMeet project, The Arc will become a resource for this topic to help families and caregivers find the information and supports that they need to better treat this disease, and once diagnosed learn how to cope and minimize the effects of dementia as best possible.

For more resources and webinars relating to dementia, check out the resources.

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Men, Get Proactive About Your Health!

Women’s health issues are highly publicized. There are information, brochures and events relating to breast cancer awareness all over the country. However, you never hear as much information regarding men’s health issues. This is not to say that men’s issues are less important because they definitely are not. Many studies have shown that men are less likely to go to doctor’s visits or follow up on concerns they are having in their bodies. More concerning is adding that to the fact that we have also learned that individuals with disabilities in general go to the doctor less than individuals without disabilities. Therefore, men with disabilities are at even more of a risk for not receiving the necessary preventative check-ups and screenings needed.

Statistics say that 1 in 6 men will be diagnosed with prostate cancer in their life. Prostate cancer is the 2nd leading cause of cancer death in men (behind lung cancer). However, it is also very curable. In fact, most men who are diagnosed with prostate cancer will not die from it if it is caught early on. The key is catching it early on. It takes about a minute to receive a prostate exam and doing this annually could be help detect abnormalities while they are still treatable.

Just like prostate cancer, testicular cancer is also very treatable if diagnosed early too. Information has been accumulating from recent studies that show an association between Down Syndrome and testicular germ cell tumors. As other malformations can occur in organs of individuals with Down Syndrome, the testicles can also develop abnormally, which can produce conditions that are conducive to creating germ cell tumor growth.

Educating self-advocates and their caregivers with information like this will help to increase awareness and raise rates of early detection for cancer in men. Help ensure the men that you care for receive the proper information and receive annual cancer screenings. A few minutes a year to get screened could make a huge difference. For more information relating to men’s health, check out the CDC’s Men’s Health page.

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Are You a Caregiver? We Want to Hear From You!

Each November, we celebrate National Family Caregivers Month, and we all know a caregiver who we respect and admire. Caregivers truly deserve year-round recognition, because they do what they do out of love and a desire to help someone live the fullest life they can despite the challenges they might face. Being a caregiver for a person with intellectual and developmental disabilities (IDD) can be as difficult as it is fulfilling at times. Dedicating your time to help another person with everything from their personal care and financial planning, to advocating for them and ensuring their life is enjoyable is no small task. The shared relationship, emotions, experiences, and memories between you and the person you care for can cause physical, emotional, and psychological strain on both the caregiver and the person with IDD receiving care. According to The Arc’s FINDS survey, 88% of caregivers feel physical fatigue, and 81% feel emotional stress or experience upset or guilt as a result of their caregiving activities.

As part of The Arc’s HealthMeet health assessment and education initiative, we seek to find out more about how caregivers of all ages and types – parents, siblings, paid staff, and others – view the health status of the person with IDD they take care of as well as their own health. Because of the additional reported physical and emotional stress on both the caregiver and the person receiving care, we also look to find out more about what plans are in place to support the person with IDD you take care of if something were to happen to you.

To help us find out more about these issues, please complete this survey or send it to a caregiver you know. This survey not only helps The Arc find out more about health issues experienced by people with IDD and their caregivers but can also be used to help caregivers think about “red flag” health concerns that they may have about the person they provide care for.

The information provided in this survey is confidential and will never be used to identify someone specifically. Individuals filling out the survey will have the opportunity to provide contact information if they choose to do so. This information will only be used to send information about The Arc and its health promotion programs.

If you have any questions about this survey, please contact Jennifer Sladen at sladen@thearc.org.

This survey is a modified version of the HealthMatters Caregiver Assessment Survey created by the University of Illinois at Chicago, Department of Disability and Human Development. HealthMeet® is a project of The Arc funded by a $938,745 cooperative agreement with the Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities Grant #5U59DD000993-02.

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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 mammograms 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.

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Some Children With IDD at Greater Risk From Flu

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.

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Take Charge of Your Health Online

By 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.

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July Is National Park and Recreation Month, a Great Time to Start Exercising

One 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 online about accessibility for people with disabilities.

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

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Mental Health and How You Can Help

On June 3, 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 (IDD). Some professionals may be unable to correctly diagnose psychiatric disabilities with people who have IDD 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 IDD, 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.

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HealthMeet® in Action in 5 States, Changing Lives

By Ann Cameron Williams, PhD, 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 (IDD). 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 IDD 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.