The Arc Reacts to Newest Autism Prevalence Data Showing 30% Increase in Two Years

Washington, DC – Today, The Centers for Disease Control and Prevention (CDC) released new data showing the prevalence of Autism Spectrum Disorder (ASD) continues to rise.  The new rate of 1 in 68 reflects a 30% increase from two years ago when the CDC released data that 1 in 88 children has autism.

“The numbers are staggering – in 2008, the CDC reported 1 in 125 children had autism and related disorders.  Today’s data showing nearly double the prevalence since then emphasizes the immediate need for better services and supports for people with autism and their families.   Autism is clearly part of the human condition and people with autism live in all of our communities.  While we have made progress in recent years to raise awareness and improve services and supports for individuals with autism, it’s simply not enough.

“From protecting the Medicaid program – the single largest funding source of services and support for people with autism and their families – to reauthorizing the Combating Autism Act before it expires in September, we have a lot work ahead of us on Capitol Hill to ensure that people with ASD are fully included in society and that ASD prevention, surveillance, public education, and professional training continue apace.  And as a grassroots organization with nearly 700 chapters across the country, The Arc will continue to lead the way and work with people with autism to support their full inclusion and participation in the community throughout their lifetimes,” said Peter V. Berns, CEO of The Arc.

ASDs are a group of developmental disabilities that are often diagnosed in early childhood and can cause significant social, communication, and behavioral challenges over a lifetime.  The Arc is the largest provider organization for people with autism in the United States. Chapters of The Arc provide services and supports for people with autism, their families, and service providers.

The Arc runs Autism NOW: The National Autism Resource and Information Center, a federally funded resource for people with ASDs and their families.  The online center aims to help people separate fact from fiction when it comes to autism.  In addition, Autism NOW provides trainings and information and referral services.

The Arc is also running a national airport rehearsal program for people with autism, other developmental disabilities, and their families called Wings for Autism.  Based on a program launched by one of our local chapters in Massachusetts responding to the needs of a family looking to take a trip to a theme park, the program is a full dress rehearsal for air travel, including the process of ticketing, security clearance, boarding, and at some locations, taxiing on the runway.

And earlier this year, The Arc announced a new partnership with Specialisterne, a Danish nonprofit, to replicate its successful model for recruiting, assessing, training, placing and supporting people with autism in jobs in the tech industry in the United States.  Specialisterne creates meaningful employment for people with autism by building relationships with technology companies that need employees whose skill sets match the characteristics of many people on the autism spectrum.  Chapters of The Arc are working with Specialisterne to serve tech companies, such as SAP and CAI, which are eager to employ people with autism as software testers, programmers, data quality assurance specialists and other technology positions.

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.

The Arc Launches New Diversity Initiative

Washington, DC – The Arc is pleased to announce it has been awarded a grant for $100,000 from the MetLife Foundation to make the programs, services and supports offered by chapters of The Arc nationwide more accessible to culturally diverse populations with intellectual and developmental disabilities (I/DD) and their family members, and to ensure that the chapters are addressing the needs of the different cultures in their communities.  To achieve these goals, The Arc will conduct a comprehensive assessment of the cultural competence within the network of 700 chapters.

This assessment will include substantial input from The Arc’s chapters as well as from current and potential stakeholders in ethnically and culturally diverse communities across the country.   In the course of the assessment, The Arc will collect information about best practices in serving a culturally diverse population drawn from the disability field, as well as health care, social services and other non-profit and for-profit industry segments.  As a result of the assessment, The Arc will develop a report that identifies the challenges developmental disability providers face when serving people with I/DD who come from diverse backgrounds and recommends solutions. Based on the report, The Arc will develop an action plan defining specific actions that can be taken by chapters of The Arc to achieve greater cultural competence.

“Organizations like the MetLife Foundation enable us to continue our work to promote inclusion and civil rights for individuals with intellectual and developmental disabilities, and with their generous support we will be able to better serve communities across the country. The Arc has a network of 700 chapters and those chapters represent a spectrum of cultural diversity. We recognize that for The Arc to be successful, we must find ways to support our organization’s growth to include more diverse populations,” said Peter Berns, CEO of The Arc.

The Arc to Launch New National Resource Center for Future Planning

The Arc is pleased to announce it has been awarded $800,000 over two years by the May and Stanley Smith Charitable Trust to develop a National Center on Future Planning for families and individuals with intellectual and developmental disabilities (I/DD).

The goal of this project is to support the estimated 600,000-700,000 families in the United States where an adult with I/DD is living with aging family members and there is no plan for the individual’s future.  The Center will empower aging caregivers to plan for the future of their adult son or daughter with I/DD, providing families with information, resources, and practical assistance in person-centered planning; guardianship and supported decision-making; housing and residential options and supports; special needs trust and representative payee services; financial planning; and personal care and independent living supports.

“There is a silent crisis facing our country that desperately needs a solution – what happens when there is no plan for how an individual with an intellectual or developmental disability will live life to the fullest when the loved one they live with is no longer with them?  In the last twenty years, people with disabilities have made great strides to live independently, be a part of their community, and experience all they want in life.  But too many people are facing the next chapter in their lives without a plan, and The Arc is seeking to provide help to families and people with disabilities looking for that roadmap,” said Peter Berns, CEO of The Arc.

The Arc’s new Center for Future Planning will have a robust online presence, with an interactive and user-friendly website geared toward older learners, with extensive, vetted content.  The website will include a database of sources for local-and state-based information, people, and related organizations, and a searchable provider database.  The Arc will also operate a telephone and online information and referral system, connecting people to help in their communities.

Chapters of The Arc will play a critical role in this Center, as they will be able to access best practice protocols when providing future planning resources in their local communities.  The Center will also feature a National Pooled Special Needs Trust, develop protocols and business infrastructure to provide private trust companies with outsource assistance in servicing existing and future beneficiaries under individual special needs trusts, create training and networking opportunities for families and professionals in the field, and establish a volunteer action network.  This new network will pair self-advocates with volunteers without disabilities to visit people with I/DD in community settings and monitor their satisfaction and quality of life.

“This ambitious project aims to support people with intellectual and developmental disabilities and their families as they face a big transition in their lives.  Families and people with disabilities are seeking out these resources, and just as The Arc has done for last sixty years of this movement, we are innovating to be a leading resource into the future,” said Berns.

The Arc Supports The Stop Child Abuse in Residential Programs for Teens Act

The Arc released the following statement in response to the introduction of S.2054, the Stop Child Abuse in Residential Programs for Teens Act, introduced by Senator Chris Murphy (D-CT) and co-sponsored by Senator Tom Harkin (D-IA) Chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee.

“The rights of students, many who have a disability, in boot camps and residential programs are too often compromised due to the lack of oversight of these facilities. We applaud Senator Murphy and Senator Harkin for standing up for these teens who have suffered abuse and for their parents who in many cases were not aware that their children were being abused. Ensuring the safety of our children in residential programs should be a top priority. We urge Senators to support this important legislation,” said Peter Berns, CEO of The Arc.

The Stop Child Abuse in Residential Programs for Teens Act will help end the abuse of children in boot camps and residential programs by setting minimum standards including prohibiting the withholding of essential food, water, clothing, shelter, or healthcare; prohibiting physical or mental abuse; improving the collection of data; requiring reporting of serious injuries and deaths to the Protection and Advocacy agency in that state or territory; and requiring transparency of these programs so parents can view the records of residential facilities and make the best decisions for their children.

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.

The Arc Urges U.S. Supreme Court to Protect Constitutional Rights of People with Intellectual Disability on Death Row

Today, the U.S. Supreme Court heard arguments in Hall v. Florida, a death penalty case concerning the definition of “mental retardation” (or intellectual disability (ID) as it is now called) that Florida uses in deciding whether an individual with that disability is protected by the Court’s decision in Atkins v. Virginia. In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with ID is unconstitutional as it violates the Eighth Amendment ban on cruel and unusual punishment.

“Florida is clearly violating the Supreme Court’s Atkins v. Virginia ruling and the Court must reaffirm its commitment to the rights of people with intellectual disabilities in our criminal justice system. Freddie Lee Hall has an intellectual disability, and Florida’s effort to flaunt the professional standards on IQ testing to end someone’s life needs to be stopped by the highest court in our country. It is immoral and unjust,” said Peter Berns, CEO of The Arc.

The Hall case centers on whether the state may establish a hardline ceiling on IQ, refusing to consider whether anyone with an obtained IQ above that level may actually have ID, despite the fact that use of such a ceiling undermines the purpose of IQ testing and the professional judgment of the diagnostician, among other things. In Hall, the Court has been asked to address Florida’s decision to draw the line at an IQ of 70. Based on the professional expertise of two leading professional organizations in the field, the American Association on Intellectual and Developmental Disabilities (AAIDD) and the American Psychiatric Association (APA), it is universally accepted that IQ test scores must be interpreted by taking into account the standard error of measurement that is inherent in IQ tests. That means that any IQ test score is best understood as a range, rather than a single score: a score of 70, for example, is best understood as indicating that the person’s “true” IQ score is most likely between 65 and 75.

In addition to IQ testing, numerous expert evaluations have documented Freddie Lee Hall’s disability. Before the Supreme Court’s decision in Atkins, a Florida trial court found that Hall had ID “all of his life”. His family recognized his disability in early childhood and teachers repeatedly noted his intellectual disability. The lower court records also include findings of severe and violent abuse of Hall during his childhood.

The Arc has participated in a number of cases on this issue before the Supreme Court including Atkins v. Virginia. The Arc’s amicus (friend-of-the-court) brief was cited by the Justices in support of its ruling that the Constitution protects all defendants with ID. On December 23, 2013, The Arc submitted an amicus brief for the Hall v. Florida case.

Through a two-year grant for $400,000 from the U.S. Department of Justice, Bureau of Justice Assistance (BJA), The Arc is developing the National Center on Criminal Justice and Disability. This project is creating 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 intellectual and developmental disabilities, whose disability often goes unrecognized. Providing accurate, effective and consistent training for criminal justice professionals is critical.

Let’s Go Out on March 29

#DDAwareThe Arc Plans for a National Day Out Event for Developmental Disabilities Awareness Month

March is national Developmental Disabilities Awareness Month and The Arc invites you to join us on March 29 in a grassroots initiative to help raise awareness about people with intellectual and developmental disabilities (I/DD).

What should you do? If you are a person with I/DD or know someone who has I/DD, simply make plans to go out somewhere in public on Saturday, March 29. That’s all. Just plan a day out and about enjoying the things you like to do. And, in the process help raise awareness and generate some conversation about people with I/DD during Developmental Disabilities Awareness Month. This one-day movement will serve to harness our collective power to gain allies, foster understanding, dispel myths and encourage a greater understanding among people without a disability.

Year round, The Arc works to promote and protect the rights of people with I/DD to live, learn, work and play as valued and contributing members of their communities. We fight for legislation to remove barriers to full participation and inclusion and have been successful on many fronts. But sometimes the barrier has nothing to do with the width of a doorway or an employer’s hiring practices. Sometimes the barrier is as subtle as a nervous glance from an uninformed person in line with you at the market.

So, this March 29, let’s all go out and start breaking down those social barriers once and for all. As an individual with I/DD, this is your chance to personally help raise awareness just by being yourself and participating in the things you enjoy alongside others in your community without disabilities. Make plans now to hit the movies, the park, your local shopping center or restaurant and maybe spark some conversation in the process. If you are a friend or family member of a person with I/DD, make plans now to enjoy a fun activity together in public and take the opportunity to show others that we’re all not so different after all.

Visit The Arc’s website at www.thearc.org/lets-go-out and find out more about this campaign and things you can do join in. And spread the word using the hashtag #DDAware on social media during the month of March. Follow us online at www.facebook.com/thearcus or www.twitter.com/thearcus and be sure to show us what you end up doing on March 29 by sharing your photos using the hashtag #DDAware.

Want to do more? You can help support The Arc’s national organization through a tax-deductible donation. Or you can find your local chapter at www.thearc.org/findachapter.

The Arc Reacts to Startling New Bureau of Justice Statistics on Crimes against People with Cognitive and Other Disabilities

This week, The Bureau of Justice Statistics (BJS) released a report on Crime Against Persons with Disabilities, 2009–2012 – Statistical Tables.  Disabilities are classified according to six limitations: hearing, vision, cognitive, ambulatory, self-care, and independent living.  Among persons with disabilities, those with cognitive disabilities experienced the highest rate of violent victimization (63 per 1,000).  Violent crime against persons with disabilities was nearly three times higher than the rate for persons without disabilities.  The rate of serious violent crime—rape or other sexual assault, robbery and aggravated assault—against persons with disabilities was nearly four times higher than that for persons without disabilities in 2012.

The Arc, which is running the new National Center on Criminal Justice and Disability with a grant from the U.S. Department of Justice, Bureau of Justice Assistance, released the following statement on the data:

“This startling data illustrates what we are hearing from self-advocates, parents, caregivers, and others within our chapter network and the disability community – people with intellectual and developmental disabilities are at particular risk of being victims of crimes of all kinds.  It’s a serious problem that we must no longer ignore or treat as a peripheral issue.  In order to effectively address this silent epidemic of unaddressed abuse and victimization among people with disabilities in the U.S., we must have support from all levels of the community – disability advocates, law enforcement, victim advocates, legal professionals, elected leaders, community advocates, and people with disabilities themselves who know all too well the trauma of victimization and the devastation of receiving little or no support.

“The Arc’s new Center on Criminal Justice and Disability aims to be a comprehensive resource to help turn these statistics around so that people with disabilities can lead safer lives in their community and access support and begin to heal when victimization occurs,” said Peter Berns, CEO of The Arc.

The Arc’s new National Center on Criminal Justice and Disability is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with intellectual and developmental disabilities (I/DD) under one roof.  The Center launched its new website earlier this week.

Comcast NBCUniversal & The Arc Launch Multi-Million Dollar National Partnership to Enhance Technology Access and Education for People with Disabilities

Comcast NBCUniversal LogoWASHINGTON, D.C. (February 25, 2014) – The Arc, an advocate for the rights of the disabilities community, and Comcast Corporation (Nasdaq: CMCSA, CMCSK) today announced they have formed an exciting new national partnership to support and expand digital technology opportunities for people with intellectual and developmental disabilities (I/DD).

Through a three-year commitment, Comcast and NBCUniversal will provide The Arc with $3.7 million in cash and in-kind support, including airtime, to promote The Arc’s public service announcements on cable and broadcast channels and xfinity.com. The Comcast Foundation is also providing $400,000 to support The Arc’s national digital training program and improve technology access and services by launching up to 12 Comcast and NBCUniversal Digital Literacy Learning Labs in major metropolitan U.S. cities.

The Arc will use the new funding to design an online resource center for cataloguing and rating apps, software and other digital resources. The 700 local chapters of The Arc nationwide will participate in designing and contributing resources to the online resource center.

“Thanks to Comcast and NBCUniversal, The Arc has a tremendous opportunity to raise awareness across the country about The Arc and the population we work with, and this partnership affords us the ability to launch an exciting new program that could change the lives of people with I/DD. By learning how to get online, people with I/DD are in a better position to gain employment, expand their social circle, and be a part of the increasingly growing community that exists online,” said Peter Berns, CEO of The Arc.

“We believe that technology, and the doors it opens, can be a game changer for the disabilities community,” said Charisse R. Lillie, Vice President of Community Investment for Comcast Corporation and President of the Comcast Foundation. “Through this new partnership with The Arc, we hope to connect and empower this community with technology that can improve their lives.”

Digital literacy is an important area of focus for the disabilities community and The Arc in this increasingly digital and online world. The majority of people with I/DD have limited or no access to contemporary and comprehensible information and communication technologies. In The Arc’s nationwide survey, Family and Individual Needs for Disability Supports (“FINDS”) in 2010, only 32 percent of people with I/DD were reported to be using computers; 13 percent communication devices; 4 percent GPS; and 6 percent video communications. This partnership will focus on assisting people with I/DD to gain access to and make effective and safe use of the Internet, including social media.

“Online safety is a big issue for all of us, and as more people with I/DD get online, it’s incredibly important that they learn to do so in a manner that protects them while allowing them the freedom to explore the online world. Our chapters are poised to provide this opportunity to people with I/DD, and I’m looking forward to witnessing how this program impacts their lives,” said Berns.

In early 2014, The Arc will be adding a new staff member to lead this new initiative. Look for updates on The Arc’s website, www.thearc.org, throughout the year as we build this resource.