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What Happens Next? The Role of Supporting Decision-Making in the Lives of Sexual Assault Survivors With Disabilities

A womoan with short gray hair and bangs stands facing the camera and smiling. She is wearing glasses, a black long sleeve shirt, and a dark blue long lanyard around her neck.

Patty Quatieri is an accomplished presenter in the field of disability rights and is based in Massachusetts. Patty has received numerous awards for her civil rights advocacy and established the first agency-wide newsletter: The Peer Support Press. She is one of the three founding leaders of the National Peer Support Network.

“People assume because we have a disability we don’t need to know what sex means and how to give consent. They only see the disability. Too many people believe we can’t have an intimate relationship or get married. I didn’t have sex education because my parents wanted to protect me. My mother took me out of the sex education class. After I was sexually assaulted, she was even more overprotective and limited my freedom. I still was not provided sex education.” – Patty Quatieri

As we recognize Sexual Assault Awareness month, the data tells a disturbing story: the National Crime Victim Survey reveals that people with intellectual disabilities experience sexual violence at seven times the rate of those without disabilities.

In our society today, it’s not easy to talk openly about sexual violence, even with increased dialogue around the issue through the #MeToo movement. This is true when it comes to talking with people in the health care profession about sexual violence as well. Health care providers rarely report sexual assault and do not engage victims with intellectual and developmental disabilities (IDD) in conversations about what happens next and how to get ongoing support. Additionally, there are limited communication tools available that encourage deeper conversations between patient victims and providers to achieve patient-centered outcomes.

To address these issues, we should be asking:

  • How can we support people with IDD to make decisions about if, when, and how they want to talk about sexual victimization they have experienced?
  • How can we ensure people with IDD are supported to make their own decisions about what happens next after victimization occurs (for example, where to get help—through peer to peer support, one-on-one counseling, or other options)?
  • How can we support people with IDD, like Patty, to decide for themselves about when and how they want to participate in sex education?

The answers to these important questions will help us move the needle in preventing and responding to sexual violence of people with IDD. The Talk About Sexual Violence project is working to make conversations on this topic easier for both health care providers and people with IDD, who have valid concerns about what might happen to them if they choose to disclose sexual harassment, abuse, or assault to a health care provider.

Now in Phase III of the project, our focus is on how health care providers can support people with IDD to have choice and autonomy when making decisions about follow-up care. By applying the core principles of supported-decision making, survivors of sexual violence can make their own decisions and stay in charge of their own recovery, while receiving any guidance, help, or support they need to do so.

The challenge is clear: despite a well-known national epidemic of sexual violence against persons with IDD, health care providers continue to struggle with having the knowledge, training, and tools needed to adequately address it. There are still far too many victims with IDD living with sexual trauma who are not receiving any support after trauma occurs.

The numbers are too high to ignore. The disability community must work closely with the victim advocacy community to target key professionals who have direct access to sexual assault victims with disabilities. Educating health care providers about the value of having conversations about sexual violence with their patients is an important beginning step for victims to 1) comprehend what has happened to them and 2) learn ways to actively engage in making their own decisions about what happens after victimization occurs. This is how victims can reclaim their power and voice after victimization and begin their healing process. The Talk About Sexual Violence project will be creating tools, webinars, and reports on this topic over the next three years to address these issues.

 

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The Arc Unites With the Black Community in Response to the Conviction of Derek Chauvin

Washington, D.C. – The Arc unites with the Black community following the conviction of former Minneapolis police officer Derek Chauvin for the murder of George Floyd.

“Mr. Floyd’s life was valuable. His life matters. Black lives matter. Mr. Floyd’s murder, at the hands of Chauvin, shows us once again that racism and white supremacy plague our country and are a matter of life and death for the Black community. The Arc is united with all Black people who continue to experience discrimination in every aspect of society and will continue our fight to achieve civil rights and social justice.

“Chauvin’s conviction on all three charges should serve as a clear directive that police brutality will not be tolerated. The jury’s decision is a step in the right direction in addressing the systemic racism, hate, and fear that continues to fuel murder, violence, and injustice.

“We grieve with Mr. Floyd’s family and the larger community and recognize that this verdict does not bring him back. But it does bring hope that we are closer to holding those accountable who routinely use their power to oppress marginalized communities,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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.

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The Arc Condemns Killing of Daunte Wright

The Arc grieves the senseless death of a young Black man with a disability at the hands of police – yet again. Daunte Wright was killed by a 26-year veteran Brooklyn Center, Minnesota police officer who says she fired her gun instead of her Taser by mistake during a traffic stop. The officer has since resigned and has been arrested and charged with second-degree manslaughter.

“Daunte Wright should still be alive, but instead, the 20-year-old father is dead. As we have seen, time and time again, the lives of Black people are too often not valued. Black lives matter.

“According to media reports, Daunte’s father says the young man dropped out of school because he had a learning disability.

“For Black people with disabilities, the odds of death or injury at the hands of law enforcement are even higher.

“The Arc is deeply saddened and angered by this pattern of violence by police against Black people in our country. It must stop. Daunte’s life was just beginning.

“We must address the systemic racism, hate, and fear that fuels this ongoing violence and police brutality. The Arc condemns racism and white supremacy that are at the root of these injustices.

“As an organization, we advocate for human and civil rights. We stand in solidarity with the Black community. We remain committed to social justice and our own efforts to fight all forms of oppression,” said Peter Berns, CEO of The Arc.

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No One Should Have to Live Like This: Steve’s Nine-Year Wait for Freedom

Thousands of people with disabilities in the U.S. use Medicaid to get the supports and services they need to live and be healthy every day. But, people with disabilities must often wait several years to get access to the type of supports they want and need in their own homes. Many are forced into nursing homes and institutions to get the services they need.

But this comes at a critical cost: freedom.

Meet Steve

Steve has cerebal palsy. For most of his young life, and like many people with disabilities, he lived with his mom. When Steve was only 22 years old, his mom became very ill. Because she could no longer provide the supports he needed, Steve was forced to move into a nursing home to get the care he could no longer receive in his childhood home. Even though Steve knew he could make it in the community with the right supports, he was forced to make this move. This was because his family was concerned about his well-being if he lived independently, and because they feared the appropriate supports were not available to him.

The nursing home put Steve in the long-term Alzheimer’s unit with people who were often in their 80’s and 90’s. This was not Steve’s choice. Steve was placed in an available bed where all long-term residents were put.

Steve hated living in the nursing home and often felt like the care he got from staff was lacking.

“I had to wait an hour for someone to respond when I asked for help. Sometimes, the nurses would come in and turn the call light off instead of helping me. I was always the last to be fed. When I needed to go to the bathroom, I would wheel my chair out to the hall and tell the staff—but they would walk away. I had to fight with the nurse to get medications. If I told someone I wasn’t getting taken care of, the care would be worse because the staff would get mad at me. At night, I couldn’t sleep because the other residents were screaming or because staff were buffing the floor.”

After a year in the nursing home, Steve’s case manager got him on the waiting list for Medicaid home and community-based services (HCBS). Access to HCBS would allow Steve to move out of the nursing home and get the help he needed in his own home in the community.

“I spent eight years on the waiting list… Every year, I got a letter about where I was on the waiting list. Every time I got that letter, I was so discouraged and disappointed because it felt like my name was not coming up. And, I thought that I would never get out.”

Finally, after nine years in the nursing home, Steve’s name did come up, and he got out.

“On my last day in the nursing home, I went to the administrator and told her, ‘thank you for kicking me out—you made my wish come true.’ When I got out and got [HCBS services], I finally had the freedom to do what I wanted to do… I could eat when and what I wanted—and the food was actually warm. I could sleep better at night. I could use the bathroom when I needed to. I could go out with friends without having to come back at a certain time. I did not have to fight nurses to get my medication. I had freedom—and a life like yours.”

Now, Steve lives independently in his own home in the community, with support from paid caregivers. While he does still experience challenges with things like getting transportation services, finding safe and affordable housing, and finding paid caregivers, he believes he is where he belongs.

Steve’s nine years in a nursing home profoundly impacted him and he wants to make sure no one has to live the way he had to.

“Just because we are disabled, [doesn’t mean we don’t deserve] equal rights—we do not belong in an institution. We should have the same opportunities as anyone else. Everyone should get the help they need in their home, [and everyone should have the right to live the life they want].”

To others with disabilities, Steve offers these words of encouragement.

“People will say there are no other options for you in your area besides an institution…Do your research. Have a backbone, be tenacious, and don’t ever give up. You are always going to have roadblocks—but you have to find your way past them. You can do it.”

Check out this video to learn more about the role of Medicaid HCBS and Supplemental Security Income in Steve’s and other advocates’ lives.

This injustice must end.

No one should have to give up their freedom to get the services they need. The Arc works every day:

  • To make sure people can get the Medicaid HCBS they need
  • To end long waiting lists for HCBS services
  • To close institutions, which still exist in 36 states nationwide

Join us! Visit thearc.org/MedicaidCantWait to learn more and see how to advocate for HCBS with us.