The Arc’s Statement on New CDC Autism Data on Minneapolis Somali Population

This week, the Centers for Disease Control and Prevention (CDC) released new project findings  on the prevalence rate of 1 in 32 Somali children with autism spectrum disorder (ASD) in Minneapolis.  While the report says that Somali children with ASD are more likely to have cognitive disabilities and more significant disabilities than all other racial groups, the data say that the rate of autism in the Somali population is about the same as in the white population (1 in 32 vs. 1 in 36).  The report also states that children who have autism aren’t identified as early as they could be.

“This new data from the CDC indicate potentially higher rates of autism spectrum disorders in distinct populations than the national numbers, clearly show that more research is needed to better understand autism, and again makes the case that additional funds must be made available for services and supports for children with autism and their families.

“The CDC continues to do important work in this area, shining a bright light on what families associated with The Arc and our chapters experience everyday – autism spectrum disorders touch so many people, of all cultures and backgrounds, and we must do more to support them to achieve their goals and to foster an inclusive society.  The Arc is committed to families of all backgrounds in our efforts to serve and support people with disabilities, through our network of 700 chapters across the country,” said Peter Berns, CEO of The Arc.

“About a third of individuals and families using advocacy services from The Arc Greater Twin Cities are from multicultural families,” said Kim Keprios, The Arc Greater Twin Cities’ chief executive officer.  “We have been working hard to make connections in the Somali community because we know Somali children who have autism are not being diagnosed as early as they could be and therefore not getting critical services. Anyone who might benefit from The Arc’s assistance in getting a diagnosis, receiving help with special education issues and more, is encouraged to call us at 952-920-0855 or visit www.arcgreatertwincities.org.”

“These data provide further evidence of the need for organizations like The Arc to continue advocating for policies and funding to ensure the needs of children with ASD and their families are being met,” said Steve Larson, senior policy director for The Arc Minnesota, the state office of The Arc in Minnesota.  “We were pleased that state elected officials approved new funding in 2013 to help children with ASD improve their communication skills and increase their inclusion in their communities, and we strongly supported passage of legislation this year requiring health insurance plans to cover needed behavior therapies for these children.  We will continue to work to make further progress in serving all Minnesotans diagnosed with ASD.”

Amy Hewitt, director of the University of Minnesota Research and Training Center on Community Living and primary investigator on the project, is also a member of the board of directors of both The Arc Minnesota and The Arc Greater Twin Cities.

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.

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.

The Arc Receives Award from Centers for Disease Control for Cutting Edge HealthMeet Project

Washington, DC – The Arc is excited to announce that it has been awarded a three year cooperative agreement through the Centers for Disease Control (CDC) to run a new project called HealthMeet.

HealthMeet aims to improve the health of people with intellectual disabilities (ID) through trainings for medical students and health professionals, community-based health assessments for individuals with ID, data collection and analysis including longitudinal health outcomes for people with ID, comprehensive information and referral, and a public awareness campaign. The project will use innovative strategies and cutting edge technology to help reduce some of the most serious health disparities people with intellectual and developmental disabilities face, and it will contribute to systems-change efforts in health care access.

“With cutting edge technology and a network of top notch partners, this project has the potential to uncover eye-opening information about the health of the millions of people with intellectual and developmental disabilities in this country.  We are thrilled to be given this opportunity by the CDC to learn more about the health of this population and help change lives in the long run by informing policy and systems change at a national level,” said Peter V. Berns, CEO of The Arc.

In addition to the CDC, The Arc is pleased to work with several of our chapters with expertise in the arena, including The Arc of San Francisco, The Arc of New Jersey, and Achieva, along with Therap, the Association on University Centers on Disabilities, the American Association on Intellectual and Developmental Disabilities, the National Association of County and City Health Officials, Autism Speaks, and the National Down Syndrome Congress.