Financial Capability Creates Independence

By Robin Shaffert, Senior Executive Officer, Individual & Family Support, The Arc

One of the four goals of the Americans with Disabilities Act is economic self-sufficiency. Yet, far too many people with disabilities continue to live in poverty. In 2015, the poverty rate for working aged individuals (16 – 64) with disabilities was 28.5%, compared to a poverty rate of people without disabilities of 12.4%; the poverty rates for children with disabilities are also disproportionately high.

There is no single reason for this high rate of poverty. Similarly, there is no single change that will end poverty for people with disabilities.  Employment rates are far too low, and often many people with disabilities who are employed are under-employed in low paying jobs.  Many people with disabilities rely on means-tested benefits to finance their supports and services. In fact, the very income and asset eligibility requirement of these benefit programs limit beneficiaries’ ability to earn income and build assets. The passage last year of the Stephen Beck, Jr., Achieving a Better Life Experience (ABLE) Act provides the first opportunity for people with disabilities to build assets without jeopardizing their benefits from means-tested programs.

Disability-related expenses often create an additional financial burden.  In families that have a child with disabilities, parents often reduce their work hours or leave the workforce altogether to care for their child with a disability, resulting in lower family income. More states and localities are enacting paid sick days and paid family leave laws, and more employers are incorporating policies that enable increased workplace flexibility.  Each of these efforts should contribute to lowering the poverty rate for people with disabilities and their families.

Proclaiming April 2016 as National Financial Capability Month, President Obama reminded us, “When every American has the tools they need to get ahead and contribute to our country’s success, we are all better off. . . . Ensuring people have the resources to make informed decisions about their finances is critical in this effort, and during National Financial Capability Month, we recommit to equipping individuals with the knowledge and protections necessary to secure a stable financial future for themselves and their families.”

Financial literacy is a critical tool in this fight to reduce poverty in the disability community.  Developing financial capability skills should be a goal for young people with disabilities throughout their school years.  In the early years, all children should be taught basic concepts related to math and money and should begin to develop decision-making skills.  As they grow, the lessons should become more complex to move them towards financial independence. An important way we can support families is to not only guide parents of children with disabilities through the public benefit system but to also help them build skills to stabilize the family’s financial situation.

The Arc and our partners in the disability community are working tirelessly to increase employment and income of people with disabilities.  For adults with disabilities, increasing financial capability is an important part of planning for a good and independent life in the community.  For more information about creating a plan to Finance the Future, visit The Arc’s Center for Future Planning.

Will There Ever Be Justice for Jenna?

jenna nccjdby Mary Clayton

My daughter, Jenna, is a 26-year old woman with Down syndrome, and she is also a sexual assault survivor. On June 11, 2013, I discovered bruising just above her pubic hairline. The next day, I took Jenna to her Primary Care Physician who suspected sexual assault. The doctor referred Jenna to the local emergency room, where a team of doctors examined Jenna verifying that she had been victimized. This may sound like a mother’s worst nightmare, but the sad reality is, the greater disillusionment has been all of the many unexpected obstacles we have encountered in our attempts to obtain justice for Jenna since her assault.

Almost three years later, and the fight continues. Time is running out because the statute of limitations is up in June of this year, and Jenna will lose her window of opportunity to get her day in court. As a determined, resourceful, and well-connected professional in North Carolina, I have sought help for my daughter in many ways. I’ve worked with the local police department, the Attorney General’s office and various other state agencies, but to my complete astonishment, the response has been minimal. This journey has been incredibly painful and long. I know Jenna is not alone, and this harrowing experience has created a deep desire to do more to address these seemingly monumental barriers to justice. Here are some realizations I’ve come to that I hope will fuel the fire for change where change is so desperately needed:

  • It is unacceptable to say because Jenna cannot fully identify the circumstances, the suspect or other details of what happened, that the case is unsubstantiated. This allows for no detailed examination of the victim’s rights or what actually happened. We must provide supports and accommodations to help protect crime victims with disabilities.
  • In Jenna’s case, it seemed that all involved were acting on behalf of everyone except my daughter, the victim with disabilities. The assumption was that she could not provide credible testimony given her disabilities and that this would hurt the chance of prosecution, even though we had evidence of blunt force trauma via private investigation.
  • The process of obtaining justice is lengthy, clumsy and lacks uniform protocol, and the associated expense keeps many from being able to afford the help they need. Most victims would probably give up before they even get started. There is not enough protection for victims with disabilities or legislation to address the type of changes needed to fully support these individuals. There are not enough safeguards in place to discourage the same thing that happened to my daughter from happening to others.
  • The media may help with an occasional story, but only a few reporters have dug deeper into Jenna’s story in the attempt to reveal all the layers of this issue and the multiple barriers to justice we have faced.
  • An alarming number of people with disabilities are being victimized all across our state of North Carolina, and throughout the country, on a routine basis because of the lack of attention paid to this issue. We need a greater focus on training efforts and oversight to ensure safety of people with intellectual/developmental disabilities (I/DD).

Those outside of the disability community may be surprised to know that people with disabilities are raped or sexually assaulted at four times the rate of those without disabilities. It’s also more common for people with I/DD to experience multiple victimizations throughout their lives, and rarely do these victims get the justice they deserve or the help they need to cope with what happened to them. The sheer amount of trauma this population in particular has had to experience, with no relief or way to process what has happened to them, is hard to fathom.

My daughter and I are thankful for The Arc’s National Center on Criminal Justice and Disability® and their work with families, victims and others. Until people with disabilities are fully included in sexual assault awareness efforts, and the supports are in place to help women, like Jenna, give voice to their own stories of victimization – the violence will continue. This month is Sexual Assault Awareness month, it provides a great opportunity to raise public awareness about sexual violence and educate our communities about ways to prevent it. Sexual violence is a major public health, human rights and social justice issue. As parents, we can partner with organizations like The Arc and NCCJD which are working to bring disability and victim advocates and agencies together to address this issue, and writing publications to provide practical suggestions on how each one of us can be a part of the solution.

We all have a role to play to educate others about the high rate of sexual assault of people with I/DD, and each one of us must do our part to help these victims. Together, I believe we can create real change in the systems serving crime victims with disabilities, as we fight for the day when we can say with a resounding YES! to the question:

Will there ever be justice for Jenna?

The Arc Awarded Grant from Amerigroup Foundation for Health and Fitness for All Project

Washington, DC – The Arc is pleased to announce that it has been awarded a $90,000 grant from the Amerigroup Foundation to conduct its Health and Fitness for All project at three chapters of The Arc in Texas and Tennessee. The Health and Fitness for All project utilizes the HealthMatters™ program, which is a training developed by the University of Illinois at Chicago that provides structured information on how to organize and start a tailored physical activity and health education program for people with intellectual and developmental disabilities (I/DD).

With Amerigroup Foundation’s support, three of The Arc’s chapters that are certified in the HealthMatters program, The Arc San Antonio, The Arc Greater Houston, and The Arc Tennessee, will implement the 12-week program to help increase participant’s knowledge about the importance of healthy eating and staying active.

“We are thrilled to be expanding this program with chapters of The Arc that have already demonstrated a commitment to the health and wellness of people with I/DD in their communities. The Amerigroup Foundation’s support will go a long way in supporting people with I/DD to make healthier decisions in their day to day lives,” said Peter Berns, CEO of The Arc.

According to the Centers for Disease Control, adults with disabilities have a 58% higher rate of obesity than adults without disabilities. Since The Arc started using the HealthMatters curriculum in 2012, the program has reached almost 500 participants to help them learn about healthy eating and the importance of staying active. The chapter activities being supported by Anthem, known as Amerigroup in those states, will reach a total of 150 participants.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 665 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

New Florida Law Seeks Protection for People with I/DD Questioned by Law Enforcement: A Positive Step, but Needs Improvement  

By Ashley Brompton, J.D., NCCJD Criminal Justice Fellow

This week, the Florida legislature passed legislation that will hopefully provide a stepping stone toward further protections for people with intellectual and developmental disabilities who are interviewed or questioned by law enforcement. The Wes Kleinert Fair Interview Act was introduced by Florida Senator Ring (D-29) named for Wes Kleinert, whose interaction with police inspired it. While the bill has some promising provisions, there are several areas that need to be strengthened and changed.

The new law does two things:

1)  Outlines a system for voluntary identification for people with developmental disabilities (this portion of the law goes into effect October 1, 2016)
2) States that an effort must be made to have professionals with expertise in autism be present at all interviews involving individuals diagnosed with autism or autism spectrum disorders (this portion of the law goes into effect July 1, 2016).
The Arc of Florida and the National Center on Criminal Justice and Disability® commend the legislators for taking action on an important issue. However, there are significant gaps in the law. We are hopeful that this legislation can be updated, strengthened and molded to become a potential model for the rest of the country to follow. Some of the problems and solutions include:

  • The interview portion of the law is specific to individuals with autism spectrum disorder – this should be broadened to include any individual with an intellectual and/or developmental disability (I/DD).
  • The person interacting with police must be diagnosed as having autism spectrum disorder – many individuals who become embroiled in the criminal justice system display characteristics of ASD, and therefore need the same protections, but were never formally diagnosed. Ensuring that law enforcement are trained on identifying I/DD will decrease dependence on a formal diagnosis or ID card for identification.
  • The protection of having an expert/ professional observe the police interaction is only triggered upon the request of the person with autism or his or her parent or guardian. This is not an automatic protection, but one they can receive only if they know to ask for it. Law enforcement are not required to tell them about this new right. It should be required that a professional/expert is present for police interaction, whether the person asks for their presence or not.
  • Even when an expert is requested, law enforcement has to make what is called a “good faith effort” to ensure that such a professional is present at the interview. This is a subjective standard. How is a good faith effort defined? Exact steps or a protocol should be outlined.
  • The law requires that the requesting party pay the costs of the expert/ professional. Asking an individual with disabilities to pay for this type of accommodation is a violation of the Americans with Disabilities Act. Under Title II of the ADA, it should be an acceptable accommodation that is paid for by the law enforcement agency or state (similar to how an interpreter is provided for a deaf person).
  • The law does not outline what the role of the expert would be. There should be a specific and intentional role for the professional. Are they there to educate law enforcement about I/DD and help them craft their interrogation or interview technique? Or are they there to advocate for the individual and ensure that they understand their rights? This should be defined more clearly.
  • The law only applies if the person with autism is a victim, a suspect, or a defendant formally accused of a crime – it does not apply to witnesses or people of interest in a crime. Many people who interact with police do not fall into one of the applicable categories. This protection should be available to anyone interviewed by police.
  • The law says that training must be provided based on the law but does not specify that training is needed on the identification of people with autism (or I/DD more generally) or interacting with people with autism (or I/DD more generally). General law enforcement training on I/DD is needed. Without training on identification, many people who do in fact have autism will be excluded from these protections because they do not have an identification card.
  • Any voluntary identification program is created and implemented through a process that includes individuals with I/DD, to ensure that all privacy and rights issues are properly considered.

In interacting with police, individuals with disabilities are particularly vulnerable – it does not matter if they are witnesses, victims, or suspects. In these situations, protections for people with I/DD ensures that each conversation with law enforcement and other criminal justice professionals is fair and understood equally by all parties. However, effective legislation must be thought through carefully in order to ensure its success. While this legislation is a positive step in the right direction, advocates must diligently work to make sure necessary improvements are made.

Mislabeled a Sex Offender: The Kelmar Family’s Fight for Justice

My name is Brian Kelmar, and I am the father of a 24 year old son who has autism and auditory and sensory processing disabilities. Our nightmare began almost six years ago, right after my son graduated high school. It’s a case of the “perfect storm” that resulted in my son being punished and treated as an outcast in our community and in society.

Do words like “trusting, bullied, eager to please, and not understanding social situations” sound familiar? These words describe my son and how he interacts and/or experiences the world around him.  Like others with autism, he had few friends growing up, let alone a girlfriend.  That core need for friendship hasn’t changed. He continues to long to fit in and feel included, and have friends in his life that he can talk to. So, when a female friend of my younger son started texting my son, he was so happy that he found someone nice to talk to.

The girl’s texts started innocently enough with just small talk.  The communication began when he was away at a college summer orientation where he was learning about the autism program he was to begin in the fall. The texting from her soon became very sexually aggressive, and he did not understand what the texts were about. He answered her questions with short words or answers, such as “like”, “what”, “ok”, and “huh”? She pointed out to him, “you really don’t understand what I am talking about” in regards to her sexual statements like “friends with benefits” and “hooking up,” along with more graphic content which he did not understand. When reading the back and forth texting, it’s clear to anyone reading these messages that they were going right over my son’s head.

After he returned from orientation, she repeatedly began asking him to meet with her. He had no idea of how to handle her sexually aggressive messages, and he certainly didn’t foresee what would happen next. When he met her in person, she became very sexually aggressive.  Like other people with autism and sensory issues, he can easily become overwhelmed and shut down, similar to a computer that has too many programs open at the same time.  This is exactly what happened during her sexual advances. When his mind “rebooted” and his thought process reengaged, he told her to stop.  She did and he took her home.

That same evening the police came to our house in the middle of the night. Since the front door is closest to my son’s room, he answered it.  Not understanding the situation and thinking the girl was in trouble because she was the aggressive one, he answered their questions before I got to the door.  The police took him to jail for two days until I could get him released on $100,000 bail.

In an instant, my son’s life was changed forever.

My son and our family entered a criminal justice system that we had no idea how to maneuver, and a system that had no idea about autism. Our lawyer had no experience with autism or working with people with disabilities. We were told by the attorney that the only option was to plea bargain. Later I discovered that is how most cases are resolved, through plea bargaining (experts estimate that 90 to 95 percent of both federal and state cases are resolved through plea bargaining).

 

During the sentencing phase, the judge heard testimony from the court appointed forensic psychologist with comments like:

“It was the alleged victim that was grooming him for a sexual encounter”
“He did not understand the situation”
“She was the aggressor”

These statements were all true based on the evidence of the text messages.  The judge understood the situation, and gave my son a ten year suspended sentence.  We never had any written plea bargain agreement. Then he was sentenced to 10 years probation. What we did not find out until after the sentencing was that due to the way the law was written, he would not only be on the sex offender registry, but he would be put on the violent sexual predator list for life.

This was absolutely devastating and the consequences last a lifetime.  This punishment will limit his ability to be employed, where he or our family can live, where he can travel to visit family members or even his future family (if they are under 18).  He can’t even travel to see his own grandmothers now because of the laws affecting travel between states.  This whole experience has been like a slow, agonizing psychological death sentence for him, and for our entire family.

Our hope is that other people with intellectual and developmental disabilities (I/DD) and their families can learn from our experience. Here are some lessons learned:

1. Never let your child (regardless of age) speak to authorities without you or another advocate and a lawyer present – no matter what.  While there are various organizations like The Arc’s National Center on Criminal Justice and Disability® (NCCJD) and some state agencies which can step in and mitigate the situation, the best scenario is to ensure the person’s rights are protected during questioning.

2. Contact NCCJD which can provide assistance in cases like this, and can also provide quality, effective training for criminal justice professionals in your state.  You will often find that many law enforcement, attorneys and other criminal justice professionals in the criminal justice system have had no training on I/DD. Through NCCJD’s information and referral and technical assistance services, their staff can work with your local chapter of The Arc and other community or state agencies to provide practical solutions that avoid destroying people’s lives before the snowball effect of the criminal justice system starts rolling.

3. If at all possible, hire a lawyer who is has experience/expertise in both the specific crime specialty (i.e., sex offenses) and defending people with I/DD. Since few attorneys have this experience, at the very least, he or she should be open to learning more about disabilities and working with NCCJD and other advocacy organizations to provide the best defense possible.

4. Finally, never agree to a plea bargain until it is written down for your approval and you know all of its consequences before you agree to it.

The sex offender registry laws must take into account a person’s disability so that true justice is served. If you or your family has experienced a similar situation, and are willing to share it, please send your story to NCCJD at NCCJDinfo@thearc.org. It’s time to bring this issue to light, and reveal the real life implications these laws have on people with I/DD and their families. We are well aware that ours is only one story of many, but together – our collective stories have the potential to become the catalyst for nationwide change. If we don’t speak out, who will?