New Law Helps Prevent Wandering of Impaired Adults and Children; Provides Aid Locating the Lost

Congress recently passed bipartisan legislation to help families locate missing loved ones with Alzheimer’s disease, autism and related conditions.  Kevin and Avonte’s Law (S. 2070), named in honor of two boys with autism who perished after wandering from safety, also supports training for caregivers to prevent and respond to instances of wandering. In response to the massive search and tragic death of Avonte Oquendo in New York City, Lori McIlwain, co-founder of the National Autism Association, assisted Senator Schumer’s office in drafting legislation that would help to prevent similar cases in the future. 

The following press release was sent from the Senate Judiciary Committee:

“The feeling of dread and helplessness families must experience when a loved one with Alzheimer’s or autism goes missing is unimaginable. But when communities are empowered to lend a hand, these terrifying situations can have positive endings and even be prevented altogether. This bill, named for two boys – one from Jefferson, Iowa, and one from New York City, improves access to technologies that advance the search for missing children.  It also expands specialized training for caregivers and first responders to help prevent wandering by vulnerable individuals. I’m grateful for all of those who worked together to get this important bill on the books to honor Kevin and Avonte and prevent future tragedies,” Grassley said.

“Families and caregivers should have the support they need to keep their loved ones with Alzheimer’s, autism, and other developmental disabilities safe. This legislation will help to educate and train caregivers to prevent wandering and provide our law enforcement officers with the tools they need to help recover missing loved ones,” Klobuchar said.
“I’m pleased Kevin and Avonte’s Law will become law so we can help save lives and give families a greater peace of mind. This legislation has a deep personal meaning for me, as I was a caregiver for my grandmother during her battle with Alzheimer’s disease. I want to thank Chairman Grassley for his tireless efforts to support this law that will help families and caregivers reunite with loved ones who wander and disappear. Kevin and Avonte’s Law will truly make a difference in preventing tragedies,” Tillis said.

“Making voluntary tracking devices available to vulnerable children with autism or adults with Alzheimer’s who are at risk of wandering will help put countless families at ease. After Avonte Oquendo ran away from his school and went missing, I learned just how prevalent wandering is among children with autism and other development disorders. I am proud to have continued to speak up for those who cannot and to have co-authored this important bill, which will help Avonte Oquendo’s memory live on, while helping to prevent other children and teens with autism from going missing,” Schumer said.

Information on the introduction of this legislation is available here, a bill summary can be found here, and full text of the legislation can be found here.

"Guardianship: As your Special Needs Child Becomes An Adult:" New Video from Summit County Probate Judge Stormer

Summit County Probate Court Judge Elinore Marsh Stormer has released a new video titled "Guardianship: As your Special Needs Child Becomes An Adult," to help parents of developmentally disabled children make decisions about their child's transition into adulthood.  In the video, parents ask questions about guardianship, and share their hopes and dreams about their developmentally disabled child.  

The video is just another in a series of videos that Judge Stormer has published to help people understand the probate court's role, and facilitate probate and guardianship related decision-making.  All of the videos can be found here. 

Columbus Dispatch Exposes Abuse and Exploitation of the Disabled

The Columbus Dispatch, in a series of articles culminating in last Sunday's article “Abused and Ignored,” detailed heartbreaking examples of young people being abused and prostituted by family members, and contained shocking statistics about the prevalence of abuse and crime among people with developmental disabilities. Among them:

• About 70 percent of developmentally disabled people report being physically and sexually assaulted, neglected or abused; about 90 percent of them reported multiple occurrences. Yet fewer than 40 percent of people reported this abuse to authorities, and those who did saw an arrest rate of less than 10 percent.

• Disabled people nationwide are three times as likely to be raped or sexually assaulted as the general population, with younger people and those with several cognitive disabilities at highest risk. An Ohio reporting system for the developmentally disabled received more than 2,000 reports of sexual abused from 2009 to 2014, but less than 1 in 4 of those cases was substantiated.

Fortunately, the paper discovered that Ohio has among the best reporting systems protecting the disabled, and prosecution success is common.

"Contrast these statistics to those in Summit County," the article reads. "Under Deputy Sheriff Joe Storad, the county tripled the number of police investigations involving disabled victims in the past two years. While the overall numbers are relatively small, it has achieved a 100 percent success rate for prosecutions: 31 out of 31 cases.  In neighboring Stark County, Deputy Sheriff Rocco Ross also pushes for vigorous prosecution of crimes against the disabled.  In just the past nine months, Ross says he has seen 560 potential criminal cases of this type, about half of which will be investigated for potential prosecution.  Ross told The Dispatch that it was a “very eye-opening experience” when he first became involved with investigating these cases. “I had no clue there were this many incidents against disabled individuals,” he said.

To read the Dispatch article, go here.

To read about a national reporting website for abuse against the disabled, go here. 

To read about the results of the reportage, go here.

First National Website Aims to Reduce Abuse of People with Disabilities

The Vera Institute of Justice has launched the first national website aimed at curbing abuse of people with disabilities.

The Vera Institute said people with disabilities are "victimized at alarming rates," and are three times more likely than the average population to experience sexual and violent assaults.

The website was developed by Vera’s Center on Victimization and Safety with funding from the U.S. Department of Justice’s Office of Violence Against Women. It offers an interactive map of people, programs, and projects nationwide.

“For many people with disabilities, their needs aren’t being met when they reach out for help, or their requests are met with skepticism, dismissed, or outright ignored,” said Reynoldsburg resident Nancy Smith, head of the victimization center. “Others may not understand what happened to them or be able to put a name to the pain and abuse they have survived. This website aims to ensure that survivors’ experiences are acknowledged and respected, and their needs are attended to.”

To read the Press Release accompanying the announcement, go here.  

Autism Patients Share Common Pattern Of Brain Inflammation

From Sarah Klein, Senior Editor, Health and Fitness, for the Huffington Post;

While science has yet to pinpoint the exact cause of autism, a new study reveals that the brains of people with the disorder share a common pattern of inflammation from an overactive immune response. 

Johns Hopkins and University of Alabama at Birmingham researchers analyzed data from autopsied brains of 72 people, 32 of whom had autism. In the brains of people with autism, they found genes for inflammation permanently activated in certain cells. The study, published in the online journal Nature Communications on Dec. 10, is the largest so far of gene expression in autism. 

"There are many different ways of getting autism, but we found that they all have the same downstream effect," Dan Arking, Ph.D., an associate professor in the McKusick-Nathans Institute for Genetic Medicine at the Johns Hopkins University School of Medicine said in a statement. "What we don't know is whether this immune response is making things better in the short term and worse in the long term." 

Inflammation is not likely a root cause of autism, but a consequence of a gene mutation, Arking stressed. To better understand inflammation's effects, researchers will want to find out whether treating it makes autism symptoms any better, he said.

Go here to read the rest of the article.  

A Holiday Gift from an ABLE Congress!

Sara Wolff (center) calling on Congress to allow disabled
 Americans to save and still receive benefits like
 Social Security Disability Insurance payments and Medicaid

The following is a reprint from the blog of Michael Morris, the Executive Director of the National Disability Institute (NDI) in Washington:

Last night, the U.S. Senate overwhelmingly passed (76-16) the Achieving Better Life Experience (ABLE) Act. The bill now goes to President Obama for signing into law. Not since the passage of the Americans with Disabilities Act (ADA) in 1990 has Congress moved forward with a change in public policy as important and unprecedented as ABLE. The ABLE Act represents the first time there is clear recognition and sensitivity to the extra costs of living with a disability for children and adults with significant disabilities and their families. Every day, all across America, parents raising a child with a disability are confronted with costs not covered by insurance and various public assistance or benefits. The costs are as varied as modifying a home to be more accessible to using adaptive equipment and assistive technology that enhances learning, mobility, hearing and the ability to use a computer, all which improve quality of life experience. 

For adults with significant disabilities, extra costs can also include additional hours of personal assistance support to get out of bed, help with cooking and other daily living needs, as well as accessible transportation, housing and employment supports. 

The ABLE Act responds to these significant daily and weekly out-of-pocket expenses by creating, for the first time, a tax-advantaged savings account (an ABLE account). This account would cover the extra costs of living with a significant disability without adversely affecting continued eligibility for government benefits such as Supplemental Security Income (SSI) and Medicaid (health care). 

No piece of legislation before this Congress had more cosponsors – 380 House Members and 74 Senators – or received more bipartisan support across both the Democratic and Republican parties. ABLE is, above all, about fairness. Families raising children with significant disabilities do not want a handout and public assistance that comes with a life sentence in poverty. The disability community wants a hand up so they can be included in the economic mainstream as productive and valued members of inclusive workplaces and communities. ABLE offers, for some individuals and families (eligibility is limited to age of onset of disability by 26 years of age), an opportunity to plan for the future by setting aside up to $100,000 for expenses that may accrue over a lifetime, without the interest being taxed when the funds are removed. For some five million plus individuals and families who are likely to establish an ABLE account in the future, it is truly an early holiday present.

Thank you to Congress for passing the ABLE Act and improving the financial security of millions of Americans with significant disabilities and their families.

The National Disability Institute is a national not for profit corporation that is dedicated to "changing thinking and behavior that advance the financial stability and economic strength of persons with disabilities across the country.  Leveraging public and private resources, NDI is uniquely and singularly focused on promoting REAL ECONOMIC IMPACT for persons across the full spectrum of disabilities."  NDI's Real Economic Impact Blog is just one part of that mission.

Let us all join in the growing chorus of voices thanking Congress for this holiday gift.  You can read more about the ABLE Act here.  This blog will later carry a final description of the law as signed by the President.

Hasbro Creates Online Program for Children With Disabilities

Hasbro, Inc.,  creator of Mr. Potato Head, Play-Doh, Monopoly, and Connect 4, is releasing a series of online videos and other tools to help children with disabilities effectively engage with both toys  and other children.

The project, “ToyBox Tools”, “is designed to help kids learn what each toy is all about, how to put the item together and presents children with alternative ways to engage independently or with peers,” according to an article on DisabilityScoop.com. According to the Hasbro website:

"Hasbro’s fundamental mission is to bring joy and play to children and their families around the world. But for some children play can be challenging. For children with a developmental disability, play isn’t always accessible out of the box, relegating countless toys to the back of the closet or the donation bin. More importantly, the joy and benefits that play can bring, the connection between peers, siblings and other generations may be lost.” 

The initiative, “emerged from employees at Hasbro concerned that kids with developmental disabilities were losing out on valuable opportunities to connect with others through play, the company said.” “Believing that we could do more, a passionate group of Hasbro employees from across the Company, came together to team up with Autism Project – a long term philanthropic partner of the Hasbro Children’s Fund, to figure out a way to help,” said Hasbro’s site. The team, Hasbro said, “learned that many classic Hasbro toys were being widely used by teachers and occupational therapists working in the field and that they were creating their own supportive play tools which provided structure that is critical to the way certain children manipulate concepts to help them understand play.” The program is available online for free, and “Hasbro officials described the effort as a pilot program and said they will continue to refine the tools.” 

See more here.