Chapters of The Arc Selected for National Center on Criminal Justice and Disability’s “Pathways to Justice” Training Program

We are pleased to announce that five chapters of The Arc were selected to pilot implementation of The Arc’s National Center on Criminal Justice and Disability’s (NCCJD) “Pathways to Justice” Training Program. Through this program, chapters will help build the capacity of the criminal justice system to effectively identify, serve and protect people with intellectual and developmental disabilities (I/DD), many of whom have “mild” disabilities that often go unnoticed among criminal justice professionals without appropriate training.

Each chapter will create and/or strengthen their current multidisciplinary team on criminal justice and disability issues (what NCCJD is referring to as “Disability Response Teams”) and gather roughly 50 trainees from law enforcement, victim advocacy and the legal profession for a one-day training on criminal justice issues. The selected chapters are listed below:

“When individuals with I/DD become involved in the criminal justice system as suspects or victims, they often face miscommunication, fear, confusion and prejudice. The Arc’s National Center on Criminal Justice and Disability plays a critical role in improving first response and communication between people with I/DD and the justice system nationally.

“Through NCCJD’s “Pathways to Justice” training program we are tapping into the most powerful resource The Arc possesses – our chapter network. The five chapters selected either have longstanding criminal justice programs or a commitment to building their capacity in providing such training, both of which are invaluable to achieving NCCJD’s overall goals. We look forward to working closely with each chapter and learning from their work. Through this collaborative effort NCCJD will become a national focal point for the collection and dissemination of resources and serve as a bridge between the justice and disability communities,” said Peter Berns, CEO of The Arc.

Last year, The Arc was awarded a two-year grant for $400,000 by the U.S. Department of Justice, Bureau of Justice Assistance (BJA) to develop the National Center on Criminal Justice and Disability.  This is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with I/DD under one roof.  The goal of this project is to create a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system – both as victims and suspects/offenders

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

The Arc’s Recycling Efforts – An Earth Day Inspiration

Over the last few years The Arc’s recycling initiatives have created environments in which individuals with intellectual and developmental disabilities (I/DD) who want to work have the training and support they need to provide valuable recycling services to businesses and their communities. Last year, thanks to generous funding from the Alcoa Foundation, The Arc expanded these recycling initiatives to three new chapters. Each chapter’s program supports employment and skill development for individuals with I/DD and takes us closer to our goal of promoting the importance of recycling as a means for environmental sustainability in local communities. Here’s how they’re doing it:

The Arc of Knox County:

Alcoa group

Sunshine Industries’ recycle team takes a moment to pose in front of the cardboard baler that is used for the Arc Recycling initiative funded by the Alcoa Foundation. The baler is used to compact the cardboard to take up less space. In addition, they also recycle various types of plastics, aluminum, and paper. Pictured from left to right is Ricky, Robert, Kimica, Nick and Mark.

In Tennessee, The Arc of Knox County decided to leverage an existing relationship with Second Harvest Food Bank to create a new recycling program that both provides employment opportunities for individuals with I/DD and helps Second Harvest recycle the large amount of plastic and cardboard materials they take in from boxes of donated food.

The satisfaction of having a job and earning a competitive wage doing work for an organization like Second Harvest can mean a lot to someone with a disability. And, for Robert Harb that joy comes from getting ready for work each day. For Robert putting on his work pants and going to his job evokes a great sense of pride. Last year, when the program began Robert showed interest in the opportunity and agreed to visit the site with his job coach. After seeing the work first hand he decided he wanted the job, but was informed that his usual sweat pants weren’t appropriate work attire. He agreed with this requirement and embraced this change in his daily routine. He was provided with several pairs of khakis and blue work pants and he now arrives each morning wearing the appropriate pants and with a great attitude. Overall, Robert has shown an increased awareness of the importance of good hygiene as well as a renewed dedication for doing his very best work. He is even saving money to expand his work wardrobe, as his career with Second Harvest continues to grow.

Ulster-Greene Arc:

Ulster-Greene

Team Member Craig Nickerson, Team Leader Theo Raddice, and Team Member Sharon Robertin take a break from sorting products to smile for the camera.

In the spring of 2011, Theo left Ulster-Greene Arc’s sheltered work center to work at a neighborhood bottle and can redemption center. The job was a good fit for him and allowed him to earn a decent paycheck, but unfortunately the center closed and Theo was left jobless. Undeterred, Theo began exploring the idea of creating a bottle and can redemption center within Ulster-Greene Arc, showing tremendous initiative In January 2012, the agency proudly opened Theo’s Bottle and Can Return, and with additional funding from The Arc through its recycling initiative, the program was able to expand.

The business currently employs eight individuals with I/DD at minimum wage or above and collects approximately 38,880 refundable items (aluminum, glass and plastic containers) weekly. From the time the products enter into the recycling centers, employees with I/DD are involved in every aspect of the job including the sorting and packaging of materials for shipment. Ulster-Greene Arc has created an environment in which customers can be helped quickly and efficiently, while workers with disabilities can showcase their talents and contribute to their community.

The Arc Montgomery County:

The Arc Montgomery County has been involved in recycling since 2005. In that time, the chapter has trained and supported both paid and volunteer workers with I/DD and have fostered inclusive work environments. The Textile Recycling & Collection Program (“TRCP”) expansion began in January 2013, utilizing various capabilities of The Arc Montgomery’s Thrift Store and document destruction business.

After several meetings with its senior executives, Asbury Methodist Village decided to launch a TRCP Multi-Day Container Collection Program for their entire community and agreed to host a permanent drop-off location for textile donations. With 823 independent living units, 122 assisted living units and 285 nursing supported units, Asbury Methodist Village, is the 12th largest Senior Living Community in the country.

Asbury Methodist Village has also asked individuals with I/DD to volunteer as collection helpers which led to them expressing an interest in hiring workers with I/DD to serve meals and arrange tables in their cafeteria and to assist recreational and social activities for seniors. Asbury Methodist Village is one of the Montgomery County largest employers, generating economic growth and opportunities for philanthropic involvement – and now generating opportunities for people with I/DD as well.

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

A Mother’s Open–Letter to The Arc About Wings for Autism

Dear Sarah,

I am writing to express my continued gratitude for the Wings For Autism event held in Anchorage, Alaska.

Jack and his cat

Jack and his cat

Our 11 year old son Jack experiences high functioning autism, which he was diagnosed with at four years of age.  While Jack did fly at ages 5 months and 9 months respectively, in his memory he has never been on an airplane, which raised concerns for us, since we have scheduled air-travel this summer.

The Wings for Autism experience was far beyond any of our expectations (our family of 4 attended).  The attention to detail, real life/real time airport experience of obtaining tickets, line waiting, Transportation Security Administration (TSA), airport exploring, more waiting at the gate; it was all so needed, and so appreciated.  The time on the aircraft was more than we could have ever hoped for, between the taxiing and “cruising altitude” beverage/snack service, the crew going through their regular motions/speeches and the pilots coaching us through the sounds and motions of the aircraft… truly exemplary.  To add to this, the generosity of all of the hands at play, from the folks getting us through the lines, to the TSA, to the airport staff, to ground crew, to the flight staff and of course the pilots, The Arc of Anchorage, Ted Stevens International Airport for handling the logistics and security of a “mock” boarding and flight on their active airstrip, not to mention all of the volunteers and hours/dollars funneled into this event is staggering and to know that this was all done for our kids, our families to have a better experience, well, it is so humbling and overwhelming to me it makes me want to cry.

Thank you.

As for our Jack, he struggled.  And it couldn’t have been a better place, better environment, FOR him to struggle.  It gave me a good glimpse of what I might see and might expect this summer.  Jack did very well for about the first 1 1/2 hour (noon to 1:30), and then he started to lose his patience.  The noises (especially from children), the waiting, the MORE waiting, it set him right to the edge.  (It is worth noting that there are interventions I could have used/will use in the future, but I wanted him to have a “rougher” experience for this practice run so I could really have an accurate view of where I needed to focus for our trip this summer; also, I knew this was the time for him to have it harder, rather than the “real” time.)  When we boarded the aircraft and sat down in his window seat, he began to emotionally shut down.  He started to have what can best be described as a panic attack, breathing fast and clenching his hands, and said he “didn’t like this anymore” and “wanted to get off/leave”.  I told him we could shut the shade on the window, which we did, and I just quietly talked him through it (I figured he would want the window, but next time maybe I’ll seat him elsewhere).  I told him that the best thing we could do was to sit in the uncomfortableness and be uncomfortable, and eventually the anxiety feeling would start to come down.  I reminded him that if we “ran away” from this moment it would only be much worse the next time (I personally have diagnosed Obsessive Compulsive Disorder, and this is true for me; I try and use this approach with Jack as well), and I knew he didn’t want to miss out on travel and experiencing new places like other people.

Jack eventually pulled the shade back up, and about 20 minutes into it, he calmed a bit and smiled, and said he felt better.  He kept wanting reassurance over and over that we weren’t going to take off.  He is terrified of motion sickness and throwing up, and he kept talking to himself about how he’d be okay, and how he probably wouldn’t throw up on the real trip this summer.  He checked out the bathroom as well.  While he never fully relaxed, all in all it went very well.  When it was all said and done, he claimed it was “awesome” and said on a scale of 1-10, it was a 10 :).

Jack still has worries about taking off/landing, and getting sick on the plane.  We will cross those hurdles as they come.  Yet, this experience with Wings For Autism gave us something we normally could never obtain, which was practice in an airport and on a real aircraft.  Who gets to have that?!!  I don’t think I can fully punctuate how important and valuable this experience was to our family and to Jack; all I can say is thank you, and hope it is a program that can be repeated so more families can benefit like we did.

Jack and his brother

Jack and his brother

One thing that all parents keep in their proverbial back pocket, ESPECIALLY families with special needs children, is the ability to leave/exit a situation if needed.  If the event is too stimulating, your child is having a meltdown, the event is too long, there is too much noise, etc., YOU CAN LEAVE.  It is a safety net, and benefits not only your child, but it is also executed in consideration for the people around you.  A plane is probably the ONLY environment in which you CANNOT leave.  You can’t even really move away.  Knowing this certainty can be figuratively paralyzing for the parents; what are you going to do if things go poorly?  All you can do is the best you can, but that one ace-in-the-hole of leaving the situation is off the table.  It is enough to keep some of us from wanting to knowingly put ourselves and our kids in that potential situation.   That is the way it has been for us.  I would be remiss if I did not admit my own anxiety about air travel this summer, but I know it is something we must rise to and experience, and I will do everything I can to support it going as smoothly as possible for both Jack and for those around us.  It is a tall order.  Thanks to Wings For Autism, it is now more attainable.

Special needs, and all the trimmings that come with it, can be difficult, even impossible, to understand.  The good thing is, people don’t need to understand.  On an empirical level, it is too much to even ask.  To raise my expectations and hope for someone else to understand what our life is like, what Jack’s life is like, might be asking something that person cannot give.  However, everyone is capable of giving compassion.  Compassion does not have to in concert with “getting it”; compassion can stand alone.  And when a parent like me or even Jack himself receives a knowing look of compassion, a gesture in kind, a gentle word or nod, an extension of patience, it is such a gift.  That is the empathy that nourishes and gets us through that moment, that hour, that day, or that week.  It satiates in a way that even I cannot express, and it keeps me going.  It keeps Jack going.  And for this, I will always remain truly grateful.

For this opportunity, we remain in your debt.

Warmest Regards,

Katherine

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.