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April Is Autism Awareness Month

/in /by The Arc

Child holding face signApril is national Autism Awareness Month and The Arc and the Autism NOW National Autism Resource & Information Center are working to empower people with autism spectrum disorders (ASD) with the information and resources they need to live their lives to the fullest potential. We are also working to help others become more accepting of people with ASDs.

With the CDC declaring that 1 in 68 children may be impacted by autism spectrum disorders, it’s a fair bet that each one of us knows someone with autism or someone who has a family member or friend with autism. That’s why it’s important to dispel all of the myths and misinformation to understand and accept what having an ASD really means. And that’s why The Autism NOW Center exists, to weed through the volumes of information out there and provide high-quality, vetted resources and information to people with autism and other developmental disabilities, their family, friends, colleagues, teachers, employers and others.

To promote awareness and acceptance, we invite you to view and share a new video about Autism NOW and learn more. Also, we encourage you to join in the conversation! Throughout April, we will publish the personal stories and perspectives of people with autism on the Autism NOW blog to generate discussion about autism awareness and acceptance. We invite your comments here and on our social media channels using the hashtag #AutismAware.

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

/in /by The Arc

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.

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Healthy Eating Tips to Help Fight Obesity

/in /by The Arc

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.

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Celebrating World Down Syndrome Day and Seeking Justice for Individuals With Down Syndrome in Today’s Society

/in , /by Guest Blogger

On March 21, 2014, the world will celebrate the ninth annual World Down Syndrome Day. While people with Down syndrome have made significant strides in education, employment, and independence, there is so much more we can do as a society to ensure people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

Ethan SaylorThe wrongful death of Ethan Saylor is just one example of the work left to do. Ethan, a 26-year old Frederick man who happened to have Down syndrome, died senselessly in the hands of three off-duty Frederick County Sheriff’s deputies in a movie theater in January 2013. Ethan’s death was tragic and avoidable. NDSS has advocated, alongside the Saylor family, for Governor Martin O’Malley of Maryland to ensure that law enforcement, first responders and other public officials all receive the very best training regarding interaction with people with disabilities and for the US Department of Justice (DOJ) to conduct an independent investigation into the death of Ethan Saylor. Emma Saylor started a change.org petition, which has gained over 370,000 signatures, calling for Governor O’Malley to investigate the death of her brother Ethan. In September 2013, Governor O’Malley issued an Executive Order establishing the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. This is Maryland’s chance to lead the way for other states on these critical issues, and ensure Ethan’s legacy lives on forever.

Just a few weeks ago in Atlanta, Georgia, Judge Christopher McFadden overturned a jury’s guilty verdicts against William Jeffrey Dumas. Dumas was convicted of repeatedly raping a young woman with Down syndrome in October 2010. According to his ruling, McFadden claims that a new trial is necessary because she did not behave like a rape victim. Even as we celebrate World Down Syndrome Day, these moments of blatant discrimination deserve our attention. NDSS condemned the judge’s actions and through an op-ed response demanded that the state of Georgia Judicial Qualifications Commission begin proceedings to remove him from office. We can all get involved by supporting a change.org petition calling for McFadden’s removal; and that justice is done with the conviction being reinstated.

Last week in Plaquemine Parish, Louisiana, a mother of a baby, Lucas, who happened to have Down syndrome, was charged with his death after poisoning him—an action that deserves condemnation and for which justice must be sought.

While we can take pause today and celebrate the achievements of people with Down syndrome all around the world, we must be reminded that for us to fully achieve our mission of equality and inclusion, we must ensure that all people with Down syndrome and other disabilities are valued, respected members of their communities. The work and partnership of The Arc’s NCCJD and NDSS is vitally important to making sure people with Down syndrome and other disabilities have the right to a meaningful life in their communities, whether it’s through a career of their choosing, a living arrangement of their liking, recreational activities of their selecting, or just friendships of their electing. We, as the national advocate for people with Down syndrome, want to be sure what happen to Ethan Saylor and other tragic, unfortunate cases never happens again.

National Down Syndrome SocietyNDSS is proud to partner with The Arc’s National Center on Criminal Justice and Disability (NCCJD), a national clearinghouse on criminal justice and disability issues funded by Bureau of Justice Assistance, U.S. Department of Justice, that provides resources, information and referral, training, technical assistance and evaluation for criminal justice and disability professionals and programs. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome. Unfortunately, we learn about these tragic, unfortunate, and senseless cases involving individuals with Down syndrome every day; and we seek to advocate on the behalf of these individuals and their families as they seek justice. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome.

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The Arc Launches New Diversity Initiative

/in /by The Arc

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 (IDD) 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 IDD 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.

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The Arc to Launch New National Resource Center for Future Planning

/in /by The Arc

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 (IDD).

The goal of this project is to support the estimated 600,000-700,000 families in the United States where an adult with IDD 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 IDD, 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 IDD 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.

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The Best Part of Your Day

/in /by Guest Blogger

By Shanell Mouland, blogger at GoTeamKate.com

If our Kate was to sit quietly beside me on any given day you might never know she was different. Her eyes are impossibly blue and her blonde hair is cut just above her chin with bangs framing her angelic face. She is tall for her age; almost four. For all intents and purposes she could, potentially, appear ‘normal’ if there is such a thing.

If you look closer you will see she that her blonde hair is wild about her head for lack of brushing, because brushing hurts and she wears a well-worn bright red Teenage Mutant Ninja Turtles t-shirt, because change is hard. In her mouth is a chewy tube that helps her regulate a need to chew and in her tiny hand is Master Splinter, the Sensei of the aforementioned turtles.

She is likely up on her toes, bouncing or spinning. If she is happy her arms are flapping. She is usually happy. The idea of her sitting quietly is almost humorous to us now.

She may be repeating a comforting phrase. She has acquired much language even if she cannot always use it properly.

“Wet’s do dis.” (Let’s do this) A phrase she’s pulled from her turtle show, no doubt.

Kate has autism and she’ll be the best part of your day.

Grace, our eldest daughter (5) and Kate’s best friend will often have one hand at the ready, for when Kate sees fit to take off. She is young and quick and can often capture her sister before me. You’ll see this scenario play out whenever we are in public. I’ve often said the four words Grace utters most in public are: “Mama, she’s getting away!”

My husband and I make every effort to do things as a family. If we feel Kate will be overwhelmed we obviously give her a pass and she can spend some down time with her grandparents, however, if we feel Kate will enjoy any given excursion, look out, because she is coming.

Our family loves a certain Japanese restaurant in our city. Do I call ahead and warn them we are coming? No. Do I announce on social media that we will be there in case someone was planning a quiet dinner? No. We attend the restaurant with our family just like you would.

Yes, Kate will most likely not sit in her seat. She will probably visit most tables in the restaurant anxious to show off her turtle figure. She will explore the textures of the seats and the tablecloths and the curtains. She will protest loudly when she is not allowed in the kitchen. She will make sure each patron eating dinner that evening is fully aware of her presence. She will call the women, Mama and the men, Daddy and she will hug more than a few.

In our experience, most people will smile broadly and engage our little social butterfly. Some will shoot us that ‘how dare you bring a child to a restaurant like this’ look and some will stare at us with pity.

As we enjoy our Sushi and Tempura and some great conversation with the folks at table five about autism and our family, the woman at table nine purses her lips and sips her wine annoyed that mid-miso soup she was privy to Kate yelling to the chef clear from our table: “Dat your hat, daddy? I have dat hat?” Her husband seems oblivious to her annoyance and taps on his phone while murdering his teriyaki.

Table five dissolves into laughter at Kate’s cute request for the chef’s hat. They order more wine and ask Kate which turtle is her favorite.

Table nine gets up and leaves. They pay their check with a disapproving glance from the Mrs. towards us.

Honestly, who brings someone like that woman out to a public restaurant where a family is trying to enjoy a meal, anyway?

And then I hear: “Mama, she’s getting away!”

Shanell Mouland is a mother, teacher and writer from New Brunswick, Canada. When she isn’t advocating for the rights of individuals with autism she is writing a children’s book called: Sunny and Sinclair. She is actively seeking a publisher because the three full time jobs mentioned earlier take a lot of time away from important things like coffee drinking and relaxing. She can be reached through her website: goteamkate.com.

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

/in , /by The Arc

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.

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It Takes a Team

/in /by Guest Blogger

By Bernard A. Krooks, Past President, Special Needs Alliance

Dignity, security and personal fulfillment are essential to the quality of life that all individuals with intellectual and developmental disabilities deserve. But they face a tangled social, political and legal landscape, and it often requires the coordinated efforts of relatives, friends and special needs professionals to help them map their way.

Family members, of course, play a central role, offering emotional support and encouragement, planning for long-term financial security and frequently acting as primary caregivers. For some, they’re an individual’s most effective advocates, reinforcing their point of view with intimate understanding of a loved one’s needs.

Yet all too often, dreams face constraints. Landmark legislation has recognized the civil rights of individuals with disabilities, and great strides have been made regarding social inclusion. But these hard-won victories are incomplete, and budget debates at all levels of government threaten even the programs already in place. Self-advocates, families and their supporters –advocacy organizations such as The Arc, the Consortium for Citizens with Disabilities, the Special Needs Alliance and many others–must continue their unstinting demand that people with disabilities have the same opportunities as others to lead self-directed, satisfying lives.

Then there are the special ed teachers, speech therapists, psychologists, career counselors and many other service providers who assist those with disabilities on a daily basis to realize their potential. These committed professionals challenge, guide and applaud those they serve in order to build the skills needed for self-reliance. They help provide a foundation for the aspirations of individuals and their families.

As a child with disabilities matures, families must often balance concern for their safety and well-being with a desire to encourage their independence. In most states, individuals are considered legal adults at 18, with full responsibility for their own financial, legal and healthcare choices. Special needs attorneys are sensitive to these deeply personal matters and can guide parents in their deliberations concerning various forms of guardianship, power of attorney and health care proxy, as necessary, and in ways to optimize self-direction.

Then there are financial considerations. The specialized care required by some individuals with developmental disabilities is costly. While many expenses are covered by public programs, there are gaps, and qualifying is usually means-based. Families, financial advisors and special needs attorneys should begin partnering early to evaluate an individual’s long-term needs, eligibility for benefits, the amount of money necessary to make up the difference between what is covered and what is not, and how to protect those funds while receiving government assistance.

Self-advocates are increasingly shaping their own destinies. It takes a team to assist them with the tools to succeed.

The Special Needs Alliance (SNA), a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them, has formed a strategic partnership with The Arc. The relationship is intended to facilitate collaboration at the local, state and national level on issues such as providing educational resources to families, building public awareness, and advocating for legislative and regulatory change. 

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Tobacco Cessation Leads to a Healthier Heart

/in /by The Arc

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.