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

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

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

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

Get the Facts on Women with I/DD and Cervical and Breast Cancer Screening

Caregivers Report Many Barriers to Life Saving Screenings

A recent study in the journal Intellectual and Developmental Disabilities titled, Family Caregivers’ Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability found  that family caregivers often did not realize the importance of regular cervical and breast cancer screenings for women with I/DD. These lifesaving screenings are important for ALL women, and this study clearly shows that we need to do more to increase awareness and reduce barriers to breast and cervical cancer screening for women with disabilities.

Through the Arc’s HealthMeet® project, we will survey women with I/DD about their frequency of breast and cervical screening as part of the larger health assessments that will be conducted in 2013 in 5 states across the country.  The data collected during the health assessments will further inform the disability and health care field about women’s access to the these critical screenings.  We must do better to protect the health and lives of women with I/DD.

For more information about breast and cervical cancer in women with disabilities, visit the CDC’s National Center on Birth Defects and Developmental Disabilities page for women with disabilities.

What Do You Think About Autism NOW?

Have you ever visited www.autismnow.org? We’d like to know what you think. Did you find what you were looking for? Do you have any suggestions for how we might improve? Take our short survey to help us ensure that this website is serving you well.

If you’re not familiar with autismnow.org, we highly recommend you take a look. Autism NOW: The National Autism Resource and Information Center is a project of The Arc funded, in part, by a grant from the Administration on Intellectual and Developmental Disabilities. It is designed to be a dynamic, interactive and central point of quality resources and information for people with Autism Spectrum Disorders (ASD) and other developmental disabilities as well as their families and others. In addition to autismnow.org, this project has created events, online education opportunities and a vibrant online social community dedicated to collecting and sharing quality information, vetted by experts and easily accessible. If you are an individual who identifies as being on the Autism spectrum or are just interested in getting more information about ASD, we invite you to explore and share the site and then take the survey if you have some feedback you’d like to give.

The Arc of Madison County eRecycling Program

By Joyce Rinaldi, The Arc of Madison County

While The Arc of Madison County has worked hard to help individuals obtain employment in businesses throughout our community, we have also developed businesses to create new work opportunities. Our most significant success has been with our recycle and an on-site paper shredding businesses. With these programs, we have employed over 100 individuals with disabilities as sorters, material handlers, and on-site shredding personnel.

With our newest endeavor, we are excited to partner with The Arc’s eXplore eRecycling Initiative, funded by the Walmart Foundation, to place more individuals with disabilities to work! With this grant, we will be recycling and shredding metal products, circuit boards, cell phones and computer hard drives. By working with community stakeholders (individuals, local businesses, etc.) to recycle electronic equipment, it allows us to empower the individuals we serve and conserve natural resources, protect public health and the environment.

Our e-recycling employees work extensively in the community, engaging one-on-one with our customers. This structure has provided a maximum benefit to both employees and customers. We have received only the most enthusiastic feedback from our customers to this end and have enjoyed seeing the relationships they have been able to establish. It is also important to note that all employees associated with this particular initiative earn at least minimum wage, which further facilitates independence.

While taking a community leader on a tour of our facility last week, I noticed excitement was in the air. As we came upon several recycle workers, they could not contain themselves. They just had to show this person the new additions to our recycling program, our truck and new hard drive destruction equipment.  They explained how we received a grant from The Arc of the United States; how we would be recycling (and destroying) new items like hard drives and cell phones; and how other people “like me” will get to work. I did not have to say anything as the workers sold the program. It is exciting to see the “ownership” in the program. It also reminded me that their commitment is what has made our recycle and shredding services successful. Commitment to their job and to our community, in the services we provide.

Get the Facts on Diabetes and People with I/DD

Join The Arc’s Experts to Learn More on December 5

November is National Diabetes Month. The American Diabetes Association estimates that nearly 26 million children and adults in the United States have diabetes and another 79 million Americans have pre-diabetes and are at risk for developing type 2 diabetes. Clearly, this is a major public health issue.  You may be wondering – how many people with I/DD have diabetes?  The answer is we aren’t sure, but we do know that diabetes is a common secondary condition affecting people with I/DD. One study found that adults with cognitive limitations had a significantly higher prevalence of diabetes than did adults with no disability (19.4% vs. 3.8%, respectively).  Major risk factors for diabetes include being overweight and lack of physical activity—factors we know disproportionality impact people with I/DD.

Diabetes, like many other chronic health conditions, can be treated or prevented with appropriate health education and interventions but people with I/DD often don’t have access to these services. This is a problem that HealthMeet™ is aiming to solve!

The main goal of The Arc’s HealthMeet™ project is to conduct health assessments, provide linkages and referrals to services and customized health navigation, and spread health education to people with ID.

The Arc of New Jersey, a HealthMeet™ pilot site, has produced a publication, “Prevent, Understand, and Live with Diabetes: A Guide for People with Developmental Disabilities” as part of their Diabetes Awareness and Education Project. This guide, which is available in English and Spanish, educates individuals with I/DD and their caregivers about important steps to take to help prevent and control diabetes, including diet changes, improved exercise habits, and regular monitoring by a health care professional.

Through HealthMeet™, we will continue to share resources like this guide on our website to help people with I/DD and their support system learn more about the serious, yet potentially preventable, health issues that affect them. In doing so, we will reduce health disparities, increase longevity and improve the quality of life for people with I/DD.

Please join us for a HealthMeet Webinar:  Prevent, Understand, and Live with Diabetes on Monday, December 5th,  2:00pm- 3:00pm EST led by Nurse Practitioner, Leone Murphy, from The Arc of New Jersey, who will present information on The Arc of New Jersey’s diabetes project.

Register here for Prevent, Understand, and Live with Diabetes.

Get Healthy with HealthMeet™

HealthMeet™, a project of The Arc funded through a cooperative agreement with the Centers for Disease Control and Prevention, works to reduce health disparities and increase the longevity and quality of life for people with intellectual disabilities. To accomplish this, we are planning free community-based health screenings and referrals for people with intellectual disabilities along with training and education for individuals, families, professionals, medical providers and other caregivers to raise public awareness of the health issues that impact people with ID across the country.

Check out our new web page with information about the program, resources and news about possible Healthmeet™ activities in your community. In the meantime, we invite you to join us for an online educational series tackling specific topics related to health promotion among people with intellectual disabilities. There will be a variety of Webinars over the coming months, beginning with the sessions below. Bookmark our page and check back often for new sessions as they are developed.

Weight Loss for Individuals with Disabilities

Monday, November 19th

 2:00 p.m. – 3:00 p.m. EST

Expert guest speakers Richard and Muriel Saunders from the University of Kansas discuss effective weight loss plans in overweight adults with disabilities.  This webinar will go into detail about methods, results and lessons learned in creating an effective weight loss program.  These research-based programs have been proven to have great success in helping people with disabilities to keep the weight off and decrease obesity-prone health disparities.  We will discuss barriers to eating healthy and strategies to increase consciousness of making healthier long-term eating decisions and how to track that progress.  Join us to hear more about this important topic.

UIC HealthMatters™ Curricula

Tuesday, November 27

2:00 p.m. – 3:00 p.m. EST

The HealthMatters™ Program from the University of Illinois at Chicago (UIC) offers various health-related trainings and curricula to help self-advocates, caregivers, families, and health care providers promote health, prevent disease, and foster community engagement of people with disabilities. Different programs are tailored for various audiences including people with disabilities, caregivers, families, and health care providers. We welcome Beth Marks, RN, PhD and Jasmina Sisirak, PhD, MPH from the Department of Disability and Human Development at UIC to share information regarding the various trainings that are associated with HealthMatters™ Program. One of the trainings will be utilized by The Arc’s five HealthMeet™ pilot sites to develop and implement a health promotion program in their communities. Please join us to find out more about these exciting trainings and programs and how they can be helpful in your community.

Get the Facts on Breast Cancer and People with I/DD

October is National Breast Cancer Awareness Month

People with intellectual disabilities (ID) tend to be less healthy than the general population and are at increased risk for many preventable and treatable conditions, including breast cancer.

According to the CDC, women who have disabilities are significantly less likely to have been screened for breast cancer in accordance with the recommended guidelines, thus placing them at a greater risk of breast cancer. Aside from non-melanoma skin cancer, breast cancer is the most common cancer among women in the United States. It is also one of the leading causes of cancer death among women of all races and Hispanic origin populations. Men can get breast cancer too, though they make up less than 1% of all cases of breast cancer.

Women with intellectual disabilities experience even greater barriers—both physical and attitudinal— that prevent them from getting the screening and preventive care they need. Here at The Arc of the United States, we are working hard to reduce health disparities and increase the longevity and quality of life for people with intellectual disabilities through our new HealthMeet™ program.

HealthMeet™ has identified some of the key barriers to care for people with ID including:

  • Lack of accessible information about healthy habits, or not enough help in navigating of health care systems and insurance plans
  • The cost of attending regular medical checkups and following up with a health provider on any risks identified during a checkup
  • Lack of health plan benefits and other insurance-related obstacles to high-quality care and choosing the right provider
  • Lack of communication training for health professionals, making interactions with people with ID difficult
  • Too much emphasis on someone’s disability in their health care, leading health professionals to skip routine screenings for common diseases or preventable health issues
  • Discrimination and stigma associated with disability

HealthMeet™ can serve as a catalyst to create powerful, innovative cascade solutions that will reduce health disparities for people with ID that ultimately result in their increased longevity and improved quality of life; and which will raise the public, health professional, and community consciousness of this great need.

Additional Resources:

Solutions for Elderly People with I/DD – Call for Innovative and Effective Solutions

Most of us have heard of the aging baby boomers, and have seen the rising population curve that shows how many of us will turn 65 and older over the next few decades.  The word on the street is that 10,000 Americans will turn 65 every day.  The image raises questions about security in the older years, caregiving for loved ones that are elderly, health care, employment, housing, transportation, acquired disability due to aging, the limited direct care workforce available to provide quality care, and the risks associated with each of these issues down the line.  For The Arc and those we represent, the aging issue brings about another unique dimension:  aging people with intellectual and developmental disabilities.

Recently I drove through the heartland of America on a few less-traveled roads.  Small towns drifted past my view.  In those towns lived a community of people of all ages, some of them I’m guessing were older, even elderly.  Statistics insist that people with I/DD represent up to 4% of the total US population.  So I do the math, and figure that even small towns have the likelihood of having someone in their community with I/DD of any age.

People with I/DD are also part of the baby boom scenario, in that they, too are growing older.  This group of older individuals with I/DD is virtually invisible to the general population.  Many have lived with their even older parents, often tucked away from the larger society.  Research shows that many people with I/DD have significant health disparities – obesity, diabetes, heart disease, asthma, and dementia to name a few- some of which unfortunately result in an unnecessarily shorter life span.  The Centers for Disease Control is attending to this issue as a priority, as is The Arc with its new CDC-funded HealthMeet initiative to promote health for people with I/DD.

This leads me to some questions: what do people with I/DD do when their own elderly parents leave the home for assisted care, or die?  What happens to the person with I/DD if families don’t have a future transition plan in place?  What if they don’t have other family members or a local service provider willing to take over support responsibilities? How is the response system prepared to address a traumatic transition during an emotionally traumatic time, and in a way that accommodates and supports the person with I/DD?   How is the medical profession prepared to address age-related disabilities in the context of someone with I/DD?  How is The Arc working with families and communities to respond to these unique issues?

Knowing that the Chapters of The Arc are the foundation of innovative and effective solutions, I invite you to send me a description of what your Chapter is doing in aging services for people with I/DD.  Send me stories of how your program has changed the life of someone that is older for the better, or if you are a family member of or an older person that identifies as having an intellectual or developmental disability that has experienced a positive outcome from a local Chapter, send me your story.  You can write me at research@thearc.org.

I look forward to hearing from you.

The Arc’s HealthMeet™: Health Promotion for People with Intellectual Disabilities

You may have heard the good news in August that the Centers for Disease Control (CDC) awarded The Arc a three-year cooperative agreement to raise awareness of and reduce the significant health disparities often experienced by people with intellectual disabilities, including those with autism. We aim to do this through offering free health screening events for people with ID, collecting and evaluating the health screening data, and launching an amazing array of evidenced-based and best practices training for key stakeholders, including people with ID.

The Arc has one million dollars to work with in this first year of the project.  And one year to make an incredible impact.

Imagine someone with an intellectual disability going through a health screening to discover that they have an undetected health issue, like high blood pressure, an infected tooth, or an untreated issue on the bottom of their foot.  Or maybe it’s a hearing problem or blurry vision that shows up in the screening.  Health professional volunteers conducting these screenings will help identify areas of concern, and staff from Chapters of The Arc will be on site to provide information, referrals, and linkages to local doctors.  This effort will be among the first to collect HIPAA-compliant health data on this population, data that will help bring more awareness and solutions to health issues that they face.

So what is our plan?  Our goal: to move more than 6,000 people with ID of all ages through a basic, free, non-invasive health screening that is conducted by volunteer health professionals such as nurses or medical students.  The CDC helped The Arc to shape the plan that focuses on five selected states/regions in which to work on implementing HealthMeet™ initiatives in this first year.  Working in a pilot phase with an eye towards replication opportunities, The Arc will be working with The Arc of Massachusetts, The Arc San Francisco, The Arc New Jersey, ACHIEVA in Pittsburgh, PA, and The Arc of North Carolina.  Together, we will implement and evaluate five different models and the work has already begun.

We are working with some amazing national partners – the Association of University Centers on Disabilities (AUCD), the American Association on Intellectual and Developmental Disabilities (AAIDD), Autism Speaks, the National Down Syndrome Congress, and the National Association of County and City Health Professionals.  Therap LLC is helping us to collect the data using state of the art technology, and the Elizabeth Boggs Center in New Jersey is helping with the data evaluation.  We are in discussions with major corporations to see how they can lend a helping hand to this important initiative.  The Arc’s own National Self Advocacy Council is involved in getting their growing network of people with intellectual disabilities involved.

We’re going to need your help.  As these Chapters of The Arc work within their states to implement HealthMeets™ early in 2013, we want our network and our national partners to activate a HealthMeet™ movement in these states.  There’s going to be online training that you can register for, learn from, and pass along to someone else.  There might be someone you can help by getting involved yourself as a volunteer.

You’ll be hearing more and more about HealthMeet™ as we advance towards full implementation.  We can all take part in activities that lead to being healthy.  Join us!

HealthMeet™ is funded by the Centers for Disease Control Grant # 1U59DD000993-01.  For more information, please contact The Arc of the United States at 202-534-3700 or at info@thearc.org.  Or, visit our website at www.thearc.org for project information.

Tuning In

Old RadioThese days, there’s a lot of talking going on. In the disability world, if you turn the radio dial, you can switch the stations from diagnosis, early intervention, and how to manage the new identity of being a family connected to a child with an intellectual and developmental disability. A few clicks up and the voices are talking about friends, inclusion, transition, and a few words on jobs and post-secondary education. Self-advocacy is heard, in some coverage areas. Turn the dial even further and words about community living, placements, institutions, sheltered workshops, supported jobs and community-based employment fade in and out. Futures planning, special needs trusts, and what to do now that Mom and Dad are old themselves. Siblings. Family support. And through it all, you hear: where are the resources to help us…

In the middle of the audible voices is a lot of static. White noise relating, perhaps, to the day-to-day survival, the daze of home to school to work to home to family in any given day; the disconnect between that and the sharp always unanticipated disruption of when the supports fall away. In some places, there is no noise at all.

The Arc is Listening

I wonder who is listening. I wonder what families are going to do.

The answer comes to me: The Arc is listening. The Arc helps families help themselves, as we’ve been doing for more than 61 years. From the listening sessions at our Annual Convention where people were given open access to a microphone in front of the Board, to hear what they wanted to say…. To our Autism NOW Center that reflects an array of information resources for people with autism and other developmental disabilities and their families… to the opportunities we give to the nation to get families involved in advocacy, in membership, participation or leadership at local, state and national levels, in working with us to advance better options for people with I/DD and their families. Our 50 Chapters that are involved in designing customized School to Transition Programs to help young adults adapt to life after high school. Through all of these, there is a listening process occurring, and we are collectively learning from all of you. Only if we listen, can we learn and grow. Only if others express their thoughts, their preferences, will there be something to learn from and something to share.

Get Involved

The Arc has always been about supporting families, and supporting those they are connected to: people with intellectual and developmental disabilities. If you are a family member and haven’t gotten involved in The Arc, think about it. If you’ve thought about creating a new Chapter, go for it. Yes, YOU. If you’ve thought about honoring us with your time, we’d love to have you with us. Now, more than ever, tuning in and getting involved in the dialogue is so important; our country is going through monumental changes that have every possibility of affecting the daily options that we have to choose from.

We’re here. We’re listening. Tune in, wherever you are, any place on the dial.