Easy Approaches to Safety and Injury Prevention

Safety firstFalls are a large cause of traumatic brain injuries and physical disabilities in the US and can happen to anyone at any age. We should strive to make sure that the environments we are working and residing in are safe for ourselves, as well as the ones we care for, and that we are taking the necessary precautions to prevent abuse of prescribed medicines, alcohol and daily mishaps.

One of the biggest safety issues is preventing falls. While some falls are inevitable and can’t be controlled we can do our best to ensure the area around us is as safe as possible to prevent the ones that we can. Some individuals with disabilities are already at a higher risk of falling due to mobility issues that can make getting around already a daily struggle for them. Small changes in your home, such as adding a railing on stairways or a handle bar in the bathroom/shower, can make a big difference. Most often these small things are simple to overlook daily, but very easy to correct. Another easy change is to make sure that there is plenty of area between furniture and tables so that individuals with walking aids will have plenty of room to pass by without hitting items around them. Remove area rugs or make sure that they are secured tightly to the floor with double sided tape or non-slip grips underneath.

Each room in your house should have proper lighting and light switches and lamps should be easy to get to when entering a room. Making sure the individual you care for receives regular check-ups to maintain their vision is also helpful, so that they can clearly see the environment around them. Blurry vision can cause dizziness or make them lightheaded which could contribute to losing their balance and tripping. Staying physically active will also help build bone density and muscle to make individuals stronger and increase coordination and balance, so that they are able to support themselves more and reduce injuries.

It is important to prevent the abuse of prescription drugs. Individuals with an intellectual disability may not intentionally misuse their drugs, but unknowingly forget to take their medicine, take too much of it, or not be aware and combine it with something else that could be potentially harmful. This is why it is necessary for individuals to learn and be aware of what medicines they are taking, potential side effects, and things to stay away from when on certain medications (such as alcohol, other prescription drugs, etc.). A pill container that has the days of the week on it is a great idea to use to distribute what pills are taken at what time of the day. They also serve as a good indicator of whether the medicine has been taken that day in case the individual forgets. This will reduce the risks associated with taking too much/too little of the prescribed medicine. Providing individuals with disabilities with this knowledge will help them understand the importance of each medication and the amounts that they take.

Future injuries and accidents can be prevented by ensuring that the environment around you is safe and the ones you care for are empowered with the knowledge of potentially harmful situations. In the case that something does happen make sure there are emergency numbers near all phones for 911, poison control and the fire department. Watch The Arc’s HealthMeet webinar to learn more about how to prevent and improve emergency care for when accidents do happen.

Health Matters – Low Physical Activity Levels For Individuals with Disabilities

HealthMeet, two people trainingCDC released their Vital Signs earlier this month that focused on physical activity and disability which revealed some alarming facts about the amount of activity that individuals with disabilities receive. The data showed that half of individuals with disabilities get no physical activity at all (compared to 1 in 4 for individuals without a disability). No physical activity leads to other health-related issues such as obesity, heart disease, stroke and diabetes – which individuals with disabilities are three times more likely to have. Changes need to be made to relay the importance of being physically active and alterations to existing programs need to occur so that individuals with disabilities have more options to physical activities that they enjoy.

The CDC states that there are more than 21 million Americans in the US that identify as having a disability. While the range of ability for these individuals varies significantly, a lot of these individuals are capable of being physically active on some level. It is recommended that individuals exercise two and a half hours a week, which breaks down to about 30 minutes of activity 5 days a week. However, any activity is better than none, so even if it’s just a 1o minute walk it still counts for something. If the individual hasn’t done any physical activity at all prior to this, 10 minutes may also be as long as they can go. Starting slowly and building up gradually over time is essential to help prevent injuries or discouraging individuals with an activity that is too difficult in the beginning.

The Arc’s HealthMeet project has taken steps to help improve the current situation by training caregivers and other direct service professionals in the HealthMatters program. HealthMatters is an evidence-based health and fitness curriculum developed by the University of Illinois at Chicago (UIC) that is tailored specifically for individuals with disabilities. It provides the structure and materials to implement a 12 week health and fitness program. Each session focuses on a healthy lesson for the day, such as making sure to drink water while exercising or the importance of stretching before/after exercising, etc., and then spends the other half of the time doing a fitness activity. Activities can be done inside or outside and require little equipment so it’s easy to implement and get started without the need for expensive machines and equipment.

Through HealthMeet, The Arc has certified 76 new trainers from 38 different Chapters of The Arc and other disability organizations across the US. HealthMatters has been implemented in a variety of different ways that suit each communities needs best, whether it’s in a day/residential program, combined with the HealthMeet project’s free health assessments, or brought into local schools special education programs. A few of The Arc’s Chapters have paired the lessons with field trips to local grocery stores to learn about eating healthy or to The Y to learn about using the different weight lifting machines and partake in water aerobics in their pool. These field trips not only were fun and educational for the participants it also got them out in their community and allowed employees that worked at the local establishments a chance to interact and learn more about our population, which they might have had little experience with beforehand.

In addition to getting these individuals up and moving on a weekly basis and helping them to learn more about making healthier choices, the HealthMatters program also improves social skills and helps build self-esteem. It gives participants a chance to interact and be part of a group. It also helps them find individuals that might have similar interests that they can be active with.

For more information about how to participate in one of The Arc’s sponsored HealthMatters: Train the Trainer sessions, contact Kerry Mauger at Mauger@thearc.org

HealthMeet: Top 5 exercises for people with intellectual and developmental disabilities

Guest post by Jared Ciner, Certified Personal Trainer, Disabilities Support Counselor
Founder/Director of SPIRIT Fit & Health

As you may already know, an extremely high percentage of people in America are suffering from obesity. What you may not know is that people with developmental and other disabilities are 58% more likely to be obese than the general population, and they make up roughly 20% of our country’s citizens. As a society, it is our duty to provide the necessary resources and support that enable people with disabilities to be healthy. The purpose of this article is to begin enabling people with intellectual and developmental disabilities to take control of their lives through the practice of health-promoting exercises that are safe, effective and tailored specifically towards their needs.

As a certified personal trainer, I believe that partaking in proper exercise and physical activities empowers us as human beings, and allows us to reach our mental, emotional and physical potential. As a support counselor, I know that people with I/DD often require adapted strategies in order to accomplish certain functional goals. In April of 2013, I teamed up with Sam Smith, certified personal trainer and proud young man with Asperger’s syndrome, to design and implement group health & fitness programs for teens and adults with intellectual and developmental disabilities. Below are five exercises that we encourage all people, including those with an I/DD, to practice in order to maximize their strength, health and independence. Each exercise focuses in improving stability, strength and cardiovascular endurance. (The information below is presented as images. Access a readable file here.)

#1: Plank:

Plank

#2: High Knees:

HealthMeet - High Knees

#3: Arm Circles:

HealthMeet - Arm Circles

#4: Single-Leg Balance:

HealthMeet - Single Leg Balance

#5: Squats:

HealthMeet - Squats

Healthy Eating Tips to Help Fight Obesity

Obesity is one of the largest problems facing adults living in the United States. Statistics show that one-third of Americans is considered obese.  Thirty-six percent of individuals with disabilities are considered obese as compared to 23% of individuals without disabilities. The best way to fight obesity is by eating healthy and staying active. Unfortunately, for individuals with disabilities there can be physical limitations as to what they can do in regards to physical activity.  While most activities can be modified to fit the person’s individual fitness needs, this still puts a greater importance on the necessity to eat healthier. Poor nutrition, which can lead to obesity, can also be a catalyst for many other health related issues too like high blood pressure, diabetes, heart disease, and fatigue.

There are many reasons as to why individuals with disabilities may not eat as healthy as they should – lack of nutritional awareness, limited income, trouble cooking themselves, difficulty chewing or swallowing specific foods, or sensitivity to certain tastes or foods. If a caregiver cooks meals for them, the individual may have limited input as to what types of foods are prepared. Ensuring that the individual has a say in their meal choices and making a few key changes can help tremendously when it comes to healthy eating. A simple change such as drinking more water instead of sugary beverages throughout the day will help keep you hydrated, feeling fuller with no calories, and generally doesn’t cost a thing.

Teaching individuals with disabilities how to save money while at the grocery store will help them pocket some extra cash for other activities or allow them to buy more food.  Simple tips such as, using coupons, buying store brand or generic brand versus name brand items, looking for daily specials, and paying attention to expiration dates will help stretch those food dollars.  Fresh fruits that are in season usually won’t go bad as quickly and are more cost efficient. Instead of buying yellow bananas that are already ripe (and can go bad quickly) try buying them when they are a little green so that they will last longer. Once bananas ripen, freeze them to make banana bread!  Individuals with disabilities who also have mobility issues might have trouble cutting up foods such as, vegetables and fruits. Specially adapted utensils can make this process easier and safer. You can also try purchasing frozen or canned fruits and veggies instead (choose fruit that is canned in 100% fruit juice and vegetables that have “no salt of sodium added” for best options). They will last longer, are already cut up, and are usually a little cheaper.  Nutritionists have also shown that there is little difference between the nutrients you receive from fresh and frozen veggies, so go ahead and grab the frozen ones!  Large supermarkets and buying in bulk will usually have cheaper prices as opposed to local or specialty shops too.

Planning out weekly meals will also help to know what foods to buy in the grocery store to ensure that individuals are eating healthy every day. When working with the individual with a disability to plan out meals for the week make sure to keep it simple. Recipes that are too difficult or take too long to prepare can be discouraging and may make them not enjoy cooking and avoid it. Recipes should have no more than 5 or 6 ingredients. A good rule of thumb when helping individuals make their meal choices is to make sure that 3 of the 5 food groups are present in each plate. This will help to allow for the individual to choose foods they like, but still keep a balanced plate. Making a larger recipe that can be frozen and eaten again later in the week is also a good idea to have for nights when there is little time to cook instead of running out to a fast food restaurant. Cookbooks for individuals with disabilities, like Cooking By Color, help to clearly illustrate what ingredients are needed and how to prepare simple, yet healthy, meals in smaller portions. To learn more about Cooking By Color’s concept and planning for successful eating, check out author Joan Guthrie Medlen’s, HealthMeet webinar.

Many resources are out there to help teach the importance of keeping a balanced diet. Choosemyplate.gov and the CDC’s new Healthy Weight Issue Briefs provide information on obesity and maintaining a healthier diet. The Arc’s HealthMeet page contains resources and webinars regarding more healthy eating tips and links for further information.

Tobacco Cessation Leads to a Healthier Heart

The heart is one of the hardest working muscles in the body, as well as the most important, which is why it’s essential to take good care of it.  Cardiovascular disease is the number one cause of death of both women and men in the United States and is the leading cause of disability.

While there are many factors that increase your risk of having cardiovascular disease that you cannot change about yourself – genetics, sex, race, ethnicity, family history, etc. – many deaths from cardiovascular diseases (heart attacks, strokes, and heart disease) can be prevented through healthier habits. Making a few key changes can prolong your life by many years!  One large issue that can be easily controlled to help reduce your risk is abstaining from tobacco use. According to the CDC 25% of adults with ID smoke as opposed to 17% for adults without disabilities.

Smoking is the leading cause of preventable deaths in the US.  Smoking tobacco allows for a build-up of plaque and other deposits to gather in the arteries (and lungs), thus blocking part of the artery and slowing the flow of blood to the heart.  The heart then has to work harder to push blood through the narrower clogged arteries to the rest of body, which leads to high blood pressure.  When the plaque builds up to become a full blockage in an artery is when a heart attack, stroke, or blood clot elsewhere in the body occurs and can be deadly.

Quitting smoking can be difficult for the general population; however when a person with an intellectual disability starts smoking tobacco quitting can be especially difficult.  There are fewer programs and resources tailored for individuals with ID that explain the full risks, so they may not understand the importance behind quitting and the range of effects it can have on their bodies.  Individuals with ID can also have a harder time controlling nicotine urges.  This can cause outbreaks of bad behaviors towards the caregiver, family member, etc. who is trying to help them to quit.  Sometimes cigarettes have even been used as a reward with an individual with ID to help reinforce another good behavior, which can lead to more confusion about why smoking is harmful.

Although resources are scarce, there are good tobacco cessation programs out there to help individuals with ID to quit.  I Can Quit was developed by Monish University in Australia to help facilitate tobacco cessation sessions with the use of their guidebook and the Michigan Department of Community Health has also worked to create tobacco cessation resources for individuals with disabilities.  Learn more about their resources and the effects of tobacco through The Arc’s HealthMeet webinar on tobacco cessation.

Although quitting can be difficult for individuals with ID, starting to smoke hopefully won’t even be considered if the correct information is communicated early on. However, it’s never too late to quit – your heart, arteries and lungs will begin to repair themselves almost immediately after you stop. It only takes about 20 minutes after your last cigarette for your heart rate to start to decrease back to a normal level.  Teaching individuals these facts and leading by example will give them the knowledge to know the harmful effects that smoking can have before they begin – which is invaluable to their heart and overall health.

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 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.

For more information on seizure treatments and evaluation, check out Seth Keller’s HealthMeet webinar.

Diagnosing Dementia in People with I/DD Difficult

HealthMeetStudies 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 I/DD.  While most of the general population develops Alzheimer’s after the age of 65, many individuals with I/DD (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 I/DD 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 I/DD.  In addition, some behavioral issues that individuals with I/DD 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 and archived webinar page on The Arc’s HealthMeet site.  Don’t forget to sign up for our upcoming webinar focusing on Understanding Behavioral Changes in Adults with IDD and Dementia.

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.

Are you a caregiver? Then 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 (I/DD) 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 I/DD 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 I/DD 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 I/DD 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 I/DD 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.

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.