Equal Access to Relationships and Sex for People with Intellectual and Developmental Disabilities…It’s About Time

A recent story in The Journal (Martinsburg, WV) about the debate over whether people with disabilities should legally be able to use sex surrogates touches on a very real yet often ignored issue within the disability community: rights regarding sexuality.  People with disabilities are often seen as asexual and not supported to fully enjoy and express their sexuality at the same level as those without disabilities.

Here in the U.S., we struggle with fully understanding and accepting sexuality, especially if we are talking about our own children. And this is true whether or not our children have disabilities, but can complicate the situation much more for parents of children (including adult children) with disabilities. This international debate draws attention to a very real problem – sexuality typically is not considered a valid need that demands focused attention. And yet, who can measure the actual effects this inattention has on the disability community at large?  For example, who knows what “behavioral issues” and other problems could be averted if sexual needs of people with disabilities were, at the very least, being acknowledged? What if their God-given relational and sexual needs were actually supported and even celebrated?

All moral arguments aside, have we considered every possible option to this dilemma and actively supported people with disabilities to pursue their own sexual fulfillment?  Consider this: How likely is it that people with disabilities, especially intellectual disabilities, have access to consistent, effective education on ways to understand their own sexual feelings and act on those in safe and healthy ways? Are they being taught how to build safe and healthy relationships and then given opportunities to do so? Do they have enough opportunities to meet that special someone who could become a future spouse, boyfriend or girlfriend? Another consideration is the disproportionate amount of sexual trauma that people with disabilities face on any given day. The rate of sexual violence is twice that experienced  by people without disabilities, and those with cognitive disabilities face the greatest risk of all. Is adequate counseling provided to victims so they are able to move forward confidently and securely in their own sexuality? What is the true effect of so much sexual violence within the minds, hearts and bodies of people with I/DDs?

Whether parent or professional, we all have an important role to play in supporting people with intellectual and developmental disabilities to achieve their own relationship bliss (or at least try to as this can be elusive for many of us with or without disabilities), and that may or may not include sexual activity. By providing equal access to this basic human right, and refusing to treat people with fully functioning hearts and sex drives as if they were still children, or in some way asexual, a door is open to explore the full range of what it means to be human, including within the realm of sexuality. For ideas and resources on how to support this cause, visit Autism NOW’s web site: http://autismnow.org/articles/resources-for-learning-about-sexuality/

Read The Arc’s position on sexuality.

Shining a Light on Violence Against People with Disabilities

On any given day in the United States, someone with an intellectual disability becomes the next victim of violence, and usually without much notice. This month, for example, a house manager at a group home for adults with intellectual disabilities in Maryland was charged with multiple counts of assault and reckless endangerment for physically abusing a resident. No one would’ve ever known, except the assault surfaced in a YouTube video providing clear evidence of the crime. And, one ESPN producer reached out to The Arc and other disability organizations recently about a story involving a coach accused of sexually assaulting a 15-year old participating in Special Olympics. Upon further research into the issue, the producer was so alarmed by the sheer number of people with disabilities who are sexually assaulted that they requested others to speak out in an effort to expand their report.

To the shock and disbelief of many, these disturbing instances of violence are commonplace in the lives of people with disabilities. The National Crime Victim Survey reveals that people with disabilities are twice as likely to become victims of crime compared to those without disabilities. Even more alarming, people with intellectual disabilities are more likely to be victimized compared to those with other types of disabilities (such as physical disabilities). The Arc receives calls from all over the country – from concerned family members, friends and people with disabilities themselves – seeking help and answers. They often need to know what to do next, where to get legal assistance, how to help an attorney understand intellectual disability, and how to find a qualified counselor to work through the trauma of victimization. Traditionally, victim advocates and disability advocates have not shared expertise and resources to address this issue, but that has slowly been changing over the past few years, creating more opportunities for victims with intellectual disabilities to obtain much-needed services and supports.

April is Sexual Assault Awareness month and this week, April 21-27, is Crime Victim’s Rights Week. It’s a perfect time for chapters of The Arc, other service providers and advocates to reach out to their local victim assistance agencies alerting them to the high risk of violence and victimization that people with intellectual disabilities face throughout their lives. The Office for Victims of Crime created a guide in 2012 for states wanting to take a team approach, bringing together law enforcement, prosecutors, adult protective, human services and self-advocates, to ensure equal access to the criminal justice system for people with disabilities. And The Arc offers fact sheets on a wide variety of topics including the Abuse of Children with Intellectual Disabilities and People with Intellectual Disabilities and Sexual Violence.

Is Justice For All…Even for Victims with Intellectual Disabilities?

Victims of crime who have intellectual and developmental disabilities face significant barriers when accessing the justice system. This became starkly evident in a recent case from Connecticut. Richard Fourtin was convicted of sexually assaulting a twenty-five year old woman with significant intellectual and physical disabilities including cerebral palsy and hydrocephalus. In the case of Fourtin v. Connecticut, the Connecticut Supreme Court overturned the conviction earlier this month, finding that the woman could have used “gestures, biting, kicking and screaming” to indicate her lack of consent to sexual intercourse. In response, The Arc of Connecticut signed onto an amicus curiae brief with other disability agencies and they are working toward revising state laws regarding victims with disabilities.

This case ignited fury among disability and victim advocates alike because the prosecution seemed to place blame on the victim for not doing what she either was incapable of doing (many victims freeze when they are being assaulted and are not sure how to respond or wonder if doing so could result in personal injury) or perhaps didn’t realize she had a choice to do. She may not have realized the actions against her were criminal. People with disabilities often don’t understand or appreciate what is happening to them when a sexual assault occurs, especially when they haven’t been taught what acts are considered a crime. Most people with disabilities experience violence more than once throughout their lives, and if they are living in a pattern of abuse, it is especially hard for them to recognize the criminal nature of an offender’s behavior.

Ongoing education to prevent sexual violence must be a priority in our advocacy communities due to the sheer number of people this problem affects, and the resulting untold, devastating consequences it has on so many lives. We must also concentrate on educating lawmakers, law enforcement and the courts about issues of victimization of people with I/DD. Consider this data from the National Crime Victim Survey (revised):

  • In 2010, the victimization rate for people with disabilities was almost twice the rate among  people without disabilities.
  • Serious violence (including rape and sexual assault) accounted for about 50% of violent acts against people with disabilities.
  • People with cognitive disabilities (which includes intellectual and developmental disabilities) experienced the highest rate of violent victimization.

October is National Crime Prevention Month, it’s a great time for chapters of The Arc and other advocates to support crime victims with intellectual disabilities.. Reaching out to local victim assistance agencies and offering education and support in their effort to help crime victims with disabilities is a great first step. Consider partnering together in a media campaign about preventing the victimization of people with disabilities. Support self-advocates who are beginning to speak up for themselves against violence in their lives by helping them develop brief presentations about this topic that they can take to the community (schools, police departments, rape crisis centers). And, let’s band together to be sure our support of people with I/DD extends to making sure crime victims are not victimized again by the criminal justice system. Find out more about victimization and criminal justice issues on The Arc’s website.

Victims with FASD Highlighted in Academic Journal

Journal of Psychiatry & Law

Many people don’t know about FASD (Fetal Alcohol Spectrum Disorder) or how common it is in the U.S. because it often goes undetected or is misdiagnosed. Similarly, most don’t realize that people with disabilities are more likely to be victims of crime compared to those without disabilities. A new, groundbreaking double issue of the Journal of Psychiatry and Law regarding people with FASD in the criminal justice system is bringing these two “underground” worlds of FASD and victimization together to be dissected and studied under one theoretical roof.

As The Arc’s Project and Information Specialist and an expert on these issues, I had the exciting opportunity to contribute to this issue! Speaking to experts in a wide array of victimization, disability and legal fields served to broaden my own perspective of how to best serve this population, and the co-authors I worked with had a similar experience. I am equally thrilled to be attending a press conference in Washington, D.C. on November 17 hosted by the National Organization on Fetal Alcohol Syndrome (NOFAS) to announce the release of this unique special issue. After the press conference NOFAS is coordinating an “FASD & The Law” policy luncheon to prioritize policy recommendation in the justice arena and develop an action plan after which they will videotape interviews with professionals and experts on the topic. Those video interviews will be available soon on the NOFAS website and possibly distributed via The Arc.

Even though a high percentage of incarcerated juveniles and adults have symptoms of FASD, many lawyers, judges and mental health professionals don’t know much about it so it continues to go unrecognized. This special issue of Journal of Psychiatry and Law helps raise awareness of the serious needs of people with FASD, and gives advocates concrete information that helps them serve victims with an FASD more confidently and compassionately.

Training is a critical tool used to educate parents, self-advocates, victim assistance agencies, court personnel and others about serving crime victims with an FASD. As a follow up to the press conference, experts will offer a free training in the Washington, D.C. area to help practitioners know how to look for red flags that identify individuals with Fetal Alcohol Spectrum Disorders (FASD) who are involved in the court system.  It will address why they may have IQ’s above 70 but have low adaptive behavior skills and describe how courts should treat people who have cognitive and neuro-developmental needs, including the importance of knowing how to provide accommodations. If you are interested in learning more about the journal article, press conference or training, please contact me at ldavis@thearc.org.

Another Perspective on Why FINDS Matters: On the Front Lines

FINDS report coverAs Project & Information Specialist with The Arc, I get the opportunity to hear from people all over the country on a daily basis about the challenges people with intellectual disabilities and developmental disabilities (I/DD) and their families face in their attempt to obtain services and supports for their loved one. For the past 15 years, I have heard from parents, grandparents, siblings, other relatives, friends, professionals and advocates from all walks of life, and the same recurring theme is boiled down into one question: We’ve tried that…NOW WHAT?

These worn-out, desperate individuals have turned everywhere they could think of looking for basic services for their loved one and have either 1) never been able to access them, or 2) the services were recently stopped due to lack of funding. Families often call our office as a last resort, and that’s why we work tirelessly to make sure their voices are heard. In fact, The Arc recently published The FINDS Survey (a report on Family and Individual Needs for Disability Supports) which explains the current challenges families are facing, and gives the individuals with intellectual disabilities and family members themselves the opportunity to share their own dreams and hopes for the future, and clearly state where our nation falls short in providing basic supports and services.

For example, we found that more than 75% of families can’t find afterschool care, non-institutional community services, trained reliable home care providers, summer, residential, respite and other services. This makes it incredibly hard, if not impossible, for families to support their loved one to become as independent as possible in the community. Also of concern, 62% of families report that services are being cut in the community, limiting or eliminating access to community life altogether.

The FINDS Survey validates that although great strides have been made in the areas of education, employment and inclusion in the community, there are still significant ways our country is falling short in providing the tools and resources families need. You can take a stand today! Learn more about The Arc’s call to action in the FINDS report and find out how, together, we can work to achieve better lives for people with intellectual disabilities and their families!

Another Great Opportunity to Inspire Others with Your Story!

Take a Survey imageWe’ve all heard it said a picture is worth a thousand words, but what about words themselves? How much is a story worth, what about your own story of advocacy? As it turns out, quite a lot! The stories we share have a way of changing the way we understand our world and help us to reframe our perspective about the good, the bad and the ugly aspects of our lives. They inspire and uplift, make us think beyond our own experiences and challenge us to make changes. One person’s story can create a chain reaction of powerful advocacy at the community, state or even national level.

That’s why The Arc is excited to be working on a project with the Genetic Alliance, the world’s leading nonprofit health advocacy organization that includes a network of more than 1,000 disease-specific advocacy organizations and is the voice of advocacy in genetics. The Genetic Alliance, with input and support from The Arc and Family Voices, recently launched an online questionnaire that asks experienced family advocates to share their advocacy journey, including how they developed certain skills and created opportunities to influence systems. Their experiences will be turned into stories that inspire and encourage others to take action and improve the lives of people with disabilities and their families. The goal is that by collecting these stories into a single publication and identifying the common themes throughout the stories, Moms and Dads, siblings and friends, and people with disabilities themselves can begin to have a better understanding of how to influence their own path in advocacy. The online questionnaire closes on Friday, August 19th. Parents (biological, adoptive, or foster), siblings, grandparents, other relatives, caregivers, and those with a health condition or disability are all welcome to participate. More details about the questionnaire can be found on the survey landing page. This is your chance to inspire others with your own story, and help countless other families benefit from your experiences. So, what are you waiting for?

Check out the survey today!

Image by Yarranz.

Think Before You Drink

People Magazine Cover for July 11, 2011The Arc has a strong history and deep roots in the prevention of intellectual and developmental disabilities (I/DD), especially when it comes to Fetal Alcohol Spectrum Disorder (or FASD), so I was thrilled to see my friend and colleague’s son in this week’s issue of PEOPLE Magazine (Check out the section called “Heroes Among Us”). Dillon Ohlemiller is 18 years old and the adopted son of Melinda Ohlemiller, a staunch advocate for people with FASD who worked for St. Louis Arc for 17 years. She knows first-hand the ins and outs of raising a child with an FASD, and the importance of early detection and providing intervention. That’s why The Arc called on her when we secured funding from the Centers for Disease Control and Prevention to write a curriculum educating others about the secondary disabilities of FASD and how to prevent them. Melinda and I worked together on this project back in the early 2000’s and today are both members of SAMHSA’s (Substance Abuse and Mental Health Services Administration) Expert panel on FASD.

Dillon is a shining example of how early supports and services can make the defining difference in the life of someone with an FASD. He has received support from the St. Louis Arc since he was 8 months old (and is currently in their summer program). At that time, The Arc had a collaborative arrangement with Our Little Haven (the agency featured in the PEOPLE article) to provide intervention and therapy services during Dillon’s early years, and the family also received respite and summer services throughout his childhood and adolescence.

With all The Arc and many other organizations, like SAMHSA and CDC have done in the area of education, some people still don’t realize that FASD is 100 percent preventable. Abstaining from alcohol during pregnancy is the surefire way to prevent a child from having an FASD. To learn more see our fact sheet available on www.thearc.org. Thanks to families like The Ohlemiller’s who openly share their own story, The Arc’s “Think Before You Drink” message is finally getting the attention it deserves!