The Arc Reacts to Newly Released CDC Autism Report Showing No Increase in Prevalence 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) remains unchanged;   1 in 68 children have been identified as having a diagnosis on the autism spectrum between 2010 and 2012.  

“While the data does not indicate an increase in autism prevalence, this does not mean that the numbers have stabilized. Previously, we have seen periods in which prevalence has remained unchanged. Between 2000 and 2002, the prevalence rate of 1 in 150 held steady, but was then followed by a dramatic rise that continued for a decade. 

“The most important thing to take away from this report is the need for early diagnosis and intervention. It is concerning that minorities, specifically black and Hispanic populations, continue to be more likely to receive a diagnosis years after their white peers. The earlier a developmental evaluation takes place, the sooner individuals and their families can begin receiving early intervention supports. Another area for improvement is access to high-quality, affordable developmental services in the community. The Arc strongly believes that all children who have been identified with autism or other disabilities deserve this access to appropriate services.

“The numbers may not have changed, but this report gives us much to think about and data to strengthen our calls to action for more resources and earlier intervention,” 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.  Chapters of The Arc across the country provide services and supports for people with autism and their families.

The Arc’s national office has several programs for persons with ASD: Autism Now: The National Autism Resource and Information Center; Wings for Autism, a national airport rehearsal program for people with autism or other developmental disabilities, and their families; and The Arc@Work, a program that develops innovative workforce solutions for the government and private sector by connecting employers with talented employees with autism or other disabilities and supporting the recruitment, on-boarding, and retention process.

 

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase. 

Everyone’s Right to Reach your Unimaginable Heights

By: Nicole Jorwic, Director of Rights Policy, The Arc of the United States, and oldest of four.

There is a saying that goes, “the two greatest gifts that a parent can give a child are roots and wings.” These are gifts that I have been lucky enough to receive, along with my siblings, including my brother Chris who has autism. My brother Chris is nonverbal, and it wasn’t until he was in his late teens that we appreciated his true intellectual capacity. Before that he was “locked away,” his words, “by autism.” My parents, even before we knew Chris’ true level of intelligence, presumed his competence and pushed his teachers, therapists and service providers to think beyond his disability.  It is with that perspective that I read the recent New York Times Magazine Article “Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?”

The article highlights the incidents of parents of children with severe physical and cognitive disabilities unnaturally stunting the growth of their children, in order to make it easier to care for them at home throughout their lifetime. This decision, I can imagine, is not come to without a great deal of deliberation and trepidation. However, it should not be the parent’s choice to make. The Arc’s Health Position Statement is clear:

“Treatments for persons with I/DD that are proposed primarily for the convenience of the caregiver (such as medical procedures that interfere with typical growth and development) must be denied.”

The decision making process, outlined in this piece, is based on the needs and desires of the caregivers, and completely removes the voice and rights of that child with a disability.

The parents are also making the decision based on information that they have received from doctors about their child’s developmental age and potential. This is science that is imperfect at best. As noted in the article, there is “a significant body of research shows that the intellects of people with severe motor impairments can be grossly underestimated.”

With this incomplete information decisions are made, despite the reality that many individuals, including my brother’s, intellectual capacities are not known or can evolve over their lifetimes, especially when they find a means to communicate. This is proven true with the child who is featured in the story. Ricky has “shown signs of purposeful movement, an important developmental milestone, by using a head-motion-activated assistive-communication device to stop and start videos at his school for the visually impaired.” This development is, I am sure, treasured by the family, but it also shows that Ricky’s right to self determination was eliminated by the decision to stunt his growth. As is clearly stated in The Arc’s Rights Position Statement regarding self determination:

“People with intellectual and/or developmental disabilities have the same right to self-determina­tion as all people. They must have opportunities and experiences that enable them to exert con­trol in their lives and to advocate on their own behalf.”

The ability to assert control in their lives was violated by the decision to stunt their growth, and the rights of these children were breached. There is a dignity of risk for all of us, including individuals with intellectual and/or developmental disabilities. That includes the right to grow, make mistakes, and to thrive. Perhaps what these families should be advocating for is not the ability to stop their child’s growth, but, what should be advocated for is better technology to help the children communicate their wants and needs, as well as technology and better supports that will make it easier for their children, as they grow into adults, to stay at home. That growth will come from roots, planted in the belief that every person has a right to reach their full physical stature and their full potential. All of us grow in ways we couldn’t have imagined as children, and all people with disabilities must be afforded the right to achieve those “unimaginable” heights.

Vote!

“Vote as if your life depends on it,” Justin Dart, Jr., the disability rights pioneer often known as the father of the Americans with Disabilities Act, implored us, “Because it does.”

Our core values call us to focus on voting during Developmental Disabilities Awareness Month in this critical election year.  The Arc’s core value of community underscores that “people with intellectual and developmental disabilities . . . have fundamental moral, civil and constitutional rights to be fully included and actively participate in all aspects of society.” Our core value of self-determination provides, “People with intellectual and developmental disabilities, with appropriate resources and supports, can make decisions about their own lives and must be heard on issues that affect their well-being.”

Voting is the most fundamental civil right.  By exercising the right to vote, people have a say in how our democracy moves forward.  As we advocate together for the full inclusion of people with disabilities in our communities, people with disabilities must have an equal say in how our society operates.  Through voting, people with intellectual and developmental disabilities (I/DD) exercise that voice equally with all members of their communities.

By advocating on the issues they care about and supporting candidates who will fight for their agendas, people with I/DD exercise their right to self-determination.  The disability community gains power by showing candidates that it will support those who advocate with us.

Unfortunately, some – but not all – states automatically deprive people with disabilities who are under guardianship of the right to vote. In other states, people with I/DD with guardians retain the right to vote unless a court specifically finds the person ineligible to vote. Self-Advocates Becoming Empowered (SABE) provides guidance on knowing your right to vote if you have a guardian: http://www.sabeusa.org/voting-and-guardianship/. Voting is a core civil right, and people with disabilities should not automatically lose that right if they are under guardianship.  We must fight to change these laws.

The implications of guardianship are far reaching.  It has long been The Arc’s position that most people with I/DD can manage their own affairs with assistance and guidance from others, and that if guardianship is necessary it should be limited and tailored.  Before considering guardianship, people with I/DD and their families should explore the many less restrictive ways that people with I/DD can receive support to make decisions.  The individual and his or her family should understand all of the implications of limiting the person’s autonomy and transferring his or her rights to a guardian, including the possibility that the person will be deprived of the right to vote. For more information on informal and formal ways to support people with I/DD to make their own decisions, visit The Arc’s Center for Future Planning: https://futureplanning.thearc.org/pages/learn/where-to-start/supporting-daily-and-major-life-decisions.

Even if a person has been deprived of the right to vote, he or she can still actively participate during this election season by supporting candidates and advocating on issues.  Let’s make sure the voices of people with I/DD are heard and that the candidates understand our messages.  And, let’s fight to change laws that deprive people with I/DD of their civil rights.

“The Times, They Are a-Changin”… But Will Criminal Justice Reform Measures Leave Some People Out?

By Leigh Ann Davis, Program Manager, NCCJD

A recent Huffington Post article stated: “America must turn the page on its over-dependence on the criminal justice system. In order to break arrest cycles and end inappropriate criminalization of people with mental illness, we must support community based behavioral health care. We need…systems dedicated to recovery for adults, resiliency for children and self-determination for people with intellectual disabilities. It is a new year, a time for reflection and new resolve. America needs a new approach to mental health care – it is a matter of life and death.”

It’s becoming increasingly apparent to those outside of the disability community just how often people with intellectual and developmental disabilities (I/DD) are suffering at the hands of a criminal justice system that struggles both to identify their disability or, once identified, respond effectively to them as either victims, suspects or offenders.  For example, the popular Netflix documentary “Making A Murderer” showcasing Brendan Dassey’s coerced confession provided a view into how a person with a disability can be easily manipulated in the criminal justice system, and people with little or no direct involvement in disability and justice issues are witnessing how hard it can be for suspects with I/DD to experience a fair system of justice.

No matter what your opinion on the guilt or innocence of Brendan or his uncle, watching the episode where Brendan “confessed,” and seeing the techniques used to force the so-called confession, may cause some sleepless nights. Yes, it’s that disturbing. People new to this issue who are learning about forced confessions for the first time become outraged when they discover just how often this is going on. The hard reality is that there are countless other Brendans who are stuck in a criminal justice system that often doesn’t recognize their disability and isn’t equipped to serve them.

Bob Dylan wrote the hit song “The Times, They Are a-Changin” in the mid-60’s as a deliberate attempt to create an anthem of change for his time. Thankfully, criminal justice reform is in the air as evidenced by the President’s Task force on 21st Century Policing, which addresses “mental health” issues. There are bipartisan coalitions working together to achieve some level of success in reducing mass incarceration through sentencing reform and other measures. President Obama also emphasized criminal justice reform in his State of the Union address.  But the question remains, will people with intellectual and developmental disabilities – who are overrepresented in the criminal justice system – be left out? Even if “the times are a-changin” with regard to criminal justice reform, how will people with disabilities be included in this conversation, or will they even be invited to the table? When the President’s report mentions “mental health” does that include people with I/DD too? If we are to effectively change our criminal justice system, how do we take into account people with I/DD who are overrepresented in the system (both as victims and suspects), and at the same time, often invisible as well (since their disability is often not immediately recognizable)? NCCJD is researching this issue, diving deep into these difficult questions and seeking achievable solutions. We are on the front-lines, actively working to support policy that will:

  • Create systemic protocols to better identify individuals with I/DD in all stages of the criminal justice system, whether victim or suspect/offender
  • Support quality training for law enforcement, attorneys and victim service providers so that individuals with I/DD are appropriately identified as having a disability, and are provided with critical supports/accommodations that enable full access to justice
  • Ensure individuals with I/DD are included in key criminal justice reform programs, such as pre-trial diversion and sentencing reduction initiatives

 

NCCJD’s mission is to bridge the gap between the criminal justice and disability worlds. Over the next two years, with the continued support of DOJ’s Bureau of Justice Assistance, we will be addressing timely issues like competency to stand trial, and the intersection of race and disability in policing in white papers, media interviews, infographics, and other publications. We are expanding our Pathways to Justice™ training program to include an elective module for Crisis Intervention Teams (CITs) that will bring targeted attention and training to the issue of I/DD for law enforcement nationwide. We will continue to offer much needed support through our information and referral and technical assistance services to a broad audience of criminal justice professionals, as well as chapters of The Arc, advocates and family members.

Few would argue it’s become clear America needs a new approach when it comes to criminal justice issues. Whether professional, family member or other advocate, we must do all that is in our power to ensure citizens with intellectual and developmental disabilities are not left behind in this new era of criminal justice reform.

Munch Into March: It’s National Nutrition Month!

March is National Nutrition Month and balanced nutritious eating habits are the corner stone of a healthy and happy life. However, according to a 2014 Disability Scoop article people with disabilities may be slipping below the daily nutritional recommendations. It is difficult to know exactly why, but it may be due to a combination of things, such as how different medications a person takes interacts with one another. People with disabilities may also struggle to afford healthy foods.

According to the National Center on Health, Physical Activity and Disability (NCHPAD), even finding accurate information on nutrition and disability can be a real challenge  because each person metabolizes foods differently based upon their genes, medications they take, and any medical conditions they have. So, it is very difficult to make nutritional recommendations that apply to everyone. There are some things that you, as a caregiver, or someone you care for can do to adapt healthy eating habits.

 

  • Familiarize yourself with nutritional risks and signs of poor nutrition and then find ways to deal with them.
  • Check out this resource from NCHPAD to find ways to adapt healthy eating practices, such as focusing on eating different types and quantities of foods in each meal. Healthy eating patterns also include cutting back on foods with excess sugars and saturated fats, as well as eating less salty foods.
  • Visit Self-Advocacy Online’s Healthy Plate This training, which was developed with input from people with intellectual and/or developmental disabilities (I/DD), uses instructional videos and learning exercises to help people with I/DD learn how to eat healthier.
  • Learn about MyPlate. This resource, developed by the United States Department of Agriculture, aims to build healthy eating habits through the lifetime by offering ideas and tips to help you create a healthier eating style that meets your individual needs.
  • Watch two recorded webinars 1) What’s For Dinner? Planning for Success in Healthy Eating and 2) Putting Nutrition on Your Radar for suggestions on how to improve healthy eating habits for people with I/DD.
  • Check out this video series from NCHPAD to learn how to think creatively when trying to stick to nutritional guidelines or special diets.

Remember, eating healthier doesn’t happen all in one day, but making small changes over time can make a big difference in improving overall health.

Chapters Commemorate Martin Luther King, Jr., Day of Service and Improve Disability Inclusion Across America

Many of our chapters spent the past two months executing service projects made possible by a grant from The Corporation for National and Community Service, the federal agency that leads national Martin Luther King, Jr. Day of Service.

Many perceive people with disabilities as the ones in need of service – but in reality, they are often a part of civic engagement at the state, local, and national level. Chapters executed great projects, including food drives and food delivery events. Check out our new Facebook album or each chapter’s Facebook page below for highlights and pictures from each event. Thank you for participating in this wonderful opportunity with us!

  • TARC: Our local chapter in Tulsa, Oklahoma, kicked off their MLK Day of Service at a University of Tulsa basketball game. Volunteers with developmental disabilities from TARC worked with university students to accept canned food donation and transport food to the Community Food Bank of Eastern Oklahoma. In February, volunteers from the chapter also packaged food at the Food Bank of Eastern Oklahoma; served meals at the Kendall Whittier Elementary School; and conducted a month-long food drive at the University of Tulsa and at the True Blue Neighbors office.
  • The Arc Big Bend: On February 15th, this Madison, Florida, chapter hosted a “free lunch” for 250 people who experience food insecurity at a local park. Volunteers with and without disabilities from the local Kiwanis club, Aktion Club, local health department, and nursing school hosted a variety of activities, including free health screenings, fire rescue demonstrations, and performances from a local boys choir.
  • The Arc of Greater Twin Cities: Our Minneapolis/St. Paul, Minnesota, chapter worked with Second Harvest Heartland Food Bank to deliver emergency food aid to at least 180 people in need. During the weekend before MLK Day, thrift stores operated by The Arc of Greater Twin Cities engaged volunteers to work at their thrift stores to collect canned food and sort clothing to be sold (the proceeds of which supported the work of The Arc of the Greater Twin Cities).
  • The Arc of the Glades: The Arc of The Glades in Belle Glade, Florida, began a joint adventure with The Church of The Harvest and Lighthouse Food Pantry to help provide food to those in need in our local community. As of February 10th, 40 volunteers with and without disabilities have given 385 hours of their time, served 2,468 meals, and distributed 5,686 bags of food to those in need.
  • The Arc of Luzerne County: Our chapter in Wilkes Barre, Pennsylvania, partnered with the Wilkes Barre Kiwanis and Pittston Rotary Club to box food for over 150 low-income seniors at the Commission on Economic Opportunity,  a local community organization that serves people suffering from poverty on MLK Day. Since this initial event, volunteers with disabilities have been serving in the kitchen at the Commission on Economic Opportunity to help prepare 800-1000 lunches daily for low-income children in the area.
  • The Arc Nature Coast: Throughout February, volunteers with and without disabilities in Brooksville, Florida, delivered and distributed fresh fruits and veggies to nearly 300 families at four food banks in the community.
  • The Arc of the Midlands: Working with community partners, this South Carolina chapter fed close to 200 people at an event that included live music, a basketball scrimmage, and special guests including state representative Chip Huggins and Indianapolis Colts football player Kelcy Quarles.
  • The Arc of Virginia: On February 19th, volunteers and chapter staff assembled 230 meals for distribution to people in Richmond who experience food insecurity. This effort was supported by Virginia Delegate Kaye Kory, members of the Virginia General Assembly, and assembly staff.
  • The Arc of Walton County: The Arc of Walton County partnered with their local Anchor Club and The Matrix Community Outreach Center to provide food to those in need in northwest Florida.
  • Genesee Arc: This New York chapter supported volunteers with and without disabilities to conduct food drives throughout the month at twelve different community locations. The food collected was donated to 200 children in need at the United Way of Genesee County’s Backpack Program, which provides food to school-age children who experience food insecurity on the weekends.