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.

Victims with FASD Highlighted in Academic Journal

Journal of Psychiatry & Law

Many people don’t know about FASD (Fetal Alcohol Spectrum Disorder) or how common it is in the U.S. because it often goes undetected or is misdiagnosed. Similarly, most don’t realize that people with disabilities are more likely to be victims of crime compared to those without disabilities. A new, groundbreaking double issue of the Journal of Psychiatry and Law regarding people with FASD in the criminal justice system is bringing these two “underground” worlds of FASD and victimization together to be dissected and studied under one theoretical roof.

As The Arc’s Project and Information Specialist and an expert on these issues, I had the exciting opportunity to contribute to this issue! Speaking to experts in a wide array of victimization, disability and legal fields served to broaden my own perspective of how to best serve this population, and the co-authors I worked with had a similar experience. I am equally thrilled to be attending a press conference in Washington, D.C. on November 17 hosted by the National Organization on Fetal Alcohol Syndrome (NOFAS) to announce the release of this unique special issue. After the press conference NOFAS is coordinating an “FASD & The Law” policy luncheon to prioritize policy recommendation in the justice arena and develop an action plan after which they will videotape interviews with professionals and experts on the topic. Those video interviews will be available soon on the NOFAS website and possibly distributed via The Arc.

Even though a high percentage of incarcerated juveniles and adults have symptoms of FASD, many lawyers, judges and mental health professionals don’t know much about it so it continues to go unrecognized. This special issue of Journal of Psychiatry and Law helps raise awareness of the serious needs of people with FASD, and gives advocates concrete information that helps them serve victims with an FASD more confidently and compassionately.

Training is a critical tool used to educate parents, self-advocates, victim assistance agencies, court personnel and others about serving crime victims with an FASD. As a follow up to the press conference, experts will offer a free training in the Washington, D.C. area to help practitioners know how to look for red flags that identify individuals with Fetal Alcohol Spectrum Disorders (FASD) who are involved in the court system.  It will address why they may have IQ’s above 70 but have low adaptive behavior skills and describe how courts should treat people who have cognitive and neuro-developmental needs, including the importance of knowing how to provide accommodations. If you are interested in learning more about the journal article, press conference or training, please contact me at ldavis@thearc.org.

The Arc Can Help You Ditch That Clunker!

Old White Car

Did you know The Arc takes donations of old vehicles? Not only can you get an old clunker out of your yard, you can earn a tax break for your donation just in time for the upcoming tax preparation season. Best of all, you help The Arc continue on its mission to advocate for and serve people with intellectual and developmental disabilities.

It sounds like a win-win situation, but I know what you’re thinking….all the paperwork and hassles with the IRS, ugh! Don’t worry, we’ll take care of all of that. The Arc has partnered with the Melwood Charity Car Donation Center to make it as easy as possible for you to donate an old vehicle to The Arc. Simply go online to donate your car or call toll-free 1-877-272-2270 Monday through Saturday and give their friendly operators some basic information and they’ll arrange for FREE towing of your vehicle. And, they’ll process all of the necessary paperwork you need to claim your deduction and mail you a Non-Cash Charitable Contributions form within 4-6 weeks. Many of our chapters across the country participate in The Arc’s Vehicle Donation Program – if your local chapter is participating, you can designate that your donation benefit them. Simply ask the operator or choose your local chapter as the beneficiary when you donate online.

Donate today or find out more about how the program works on our website. And, check out the useful  Donors Guide to Vehicle Donations from the IRS to help you maximize your deduction. You won’t have to worry about the hassle of trying to repair, advertise to sell or attempting to junk your old car yourself. Just one call or click and we’ll take care of it for you!

Imagine What We Can Do Together

A brother and sister hug

Do you believe that all people, including those with intellectual and developmental disabilities (I/DD) have abilities and value? Do you believe people with I/DD have the right to live and work in communities of their choosing? Have you thought about aligning your group with The Arc as a chapter?

The Arc is the largest community-based organization for people with I/DD, leading a national movement advocating for and supporting families and individuals with I/DD across their lifetimes and across all diagnoses. We believe in self-determination and empowering people with the support they need to make informed decisions and choices about how they live. Do you?

Although we’re a large, national organization with a strong, 60-year history of advocating for people with I/DD, our true strength is found within our network of more than 700 chapters across the country. It is people like you working through local organizations who are on the front lines serving and supporting people with I/DD and their families. How much more could you do with the power of The Arc behind you?

We’d like to find out. The Arc is now actively seeking organizations to join our chapter network and take advantage of benefits such as strong federal advocacy initiatives, organizational support, a bold national identity, discounts on training and events, access to collaborative fundraising projects, a network of experienced executives offering professional support, and other resources to make the work you do a little easier. Find out more at www.thearc.org/become-a-chapter or contact Dee Dee Eberle, Director of Chapter Organizing and Advocacy at Eberle@thearc.org today.

P.S. If becoming a Chapter is not your cup of tea, but you still would like to support The Arc, consider becoming an Organizational Member. Explore the benefits.

Cloud Computing and People with Cognitive Disabilities

Computer Monitor with Sky Blue Screen

I’m here at the University of Colorado in Boulder at a fascinating two-day conference on cloud computing for people with cognitive disabilities. Hosted by the Coleman Institute for Cognitive Disabilities and others, the conference focuses on envisioning a future in which people with intellectual and developmental disabilities (I/DD) use cloud technology to support every day activities. “Cloud computing?” you may ask. What is cloud computing, and what is the relationship to supporting people with I/DD?

Cloud computing is real and is already happening. According to Wikipedia, “Cloud computing is the delivery of computing as a service rather than a product, whereby shared resources, software, and information are provided to computers and other devices as a utility (like the electricity grid) over a network (typically the Internet).” Think of internet-based tools such as Google docs, Picasa photos, on-line education, or paying a speeding ticket online. Online banking. Applications on your cell phone. Remote supports in residential settings that use off-site monitoring. Smart homes. These are all examples of cloud technology.

Families connected to I/DD need to be aware of the impending crisis: there are not enough personal support staff to go around for all of the estimated 8 million people with I/DD, many of whom are living with aging parents. Add to that equation the rising aging population that will be competing for care attendants. The writing is on the wall – there are fewer government resources to pay for traditional support services for people with I/DD as we know them today. As a result, we need to be looking at alternative solutions to support needs now. Developers of cloud technology are working on supports for people with I/DD that include family involvement and partnerships, supported and customized employment, recreation and leisure, remote therapies and counseling, health promotion, fiscal management, and many other daily supports. While the research is largely catching up to this digital revolution, early indications are that cloud technology advances the independence and self determination of people with I/DD. While this technology will never replace the one-on-one supports needed by those with significant support needs, for many others cloud technology represents a new way of achieving personal goals and moving through day to day activities, with less reliance on others.

The Arc’s Research and Innovations Department will be highlighting cloud technology on a regular basis. Good places to get information online are the Global Public Inclusive Infrastructure (GPII), Ablelink Technologies, and the Coleman Institute for Cognitive Disabilities.

Why FINDS Matters – An Addition to Your Advocacy Toolkit

FINDS report coverThe Arc’s amazing network of advocates has been working tirelessly to ensure that Medicaid does not suffer budget cuts with the “Don’t Cut Our Lifeline Campaign.” From the debt ceiling negotiations earlier this summer to current outreach to Members of Congress to ensure that individuals who rely on Medicaid do not lose essential services, our advocates have been busy this summer!

Hearing personal stories from individuals with intellectual and developmental disabilities (I/DD) and their families has helped make Members of Congress stop seeing Medicaid as just another entitlement program and see it as an important lifeline for millions of Americans. While these stories have helped to enlighten elected officials, many still don’t see the true scope of what Medicaid means to families across the country. This is where The Arc’s FINDS (The Family and Individual Needs for Disability Supports) Survey can help.

Have you read the report on The FINDS survey yet? You should. The startling results provide supporting data for the “Don’t Cut Our Lifeline” campaign. With over 5,000 parents, siblings, children, grandparents and relatives of individuals with I/DD surveyed, the results can’t be ignored. Most telling was the insight from caregivers about how they provide for the supports for their loved ones with I/DD:

  • Fifty-two percent of families use Medicaid funds to pay for long term care services and supports, primarily through the Medicaid HCBS Waiver program
  • People with severe I/DD were more likely to have reported getting supports from a family member paid through the HCBS Waiver program (59%), while people with mild I/DD were more likely to have received supports from a family member paid out of personal or family sources (56%), most often the personal income of a parent, family member or other caregiver
  • Nearly two-thirds of family caregivers (62%) are paying for some care out of pocket. Family caregivers struggle to find afterschool care (80%), reliable home care providers (84%) and community-based care (82%)

The challenges facing family caregivers also provide support for the “Don’t Cut Our Lifeline” campaign:

  • Overall, 62% report experiencing decreases in services and 32% were waiting for government funded services, most for more than 5 years
  • More than 40% of family caregivers reported the person with I/DD had unmet support needs during the last year for running errands or seeing a doctor (48%), managing finances (46%), transportation (45%) and household management (41%)

Many of you are living the reality behind these data points. The survey is a powerful tool you can use to get that point across to Members of Congress or others who can help the millions of families and individuals who depend on Medicaid. Find more information about how the FINDS results support the “Don’t Cut Our Lifeline” campaign, then find out more about what you can do to help here.