The United States Capitol Building

The Disability Community Must Once Again Show #WeAreEssential

By: Nicole Jorwic, Senior Director of Public Policy, The Arc

Here we are again, fighting for our lives in Congressional negotiations – this time during a global pandemic. And the outcome will impact the services people with disabilities rely on, strain systems that provide those services, and may close down service providers all over the country that support people with disabilities to live the lives they choose.

This is far from the first time in my five years in Washington, DC, that I have watched Congress overlook the disability community. In 2017, the year Congress tried again and again to cut funding to Medicaid, a program that people with disabilities rely on for supports and services, we made them pay attention. But it took people with disabilities and their families coming forward to share their most personal stories, and some literally putting their bodies on the line, to show Congress that Medicaid means life and death. Together we were strong enough to hold off the full repeal of the Affordable Care Act, protect the integrity of the Medicaid program, and show the power of our community.

And, again, it seems the issues that matter to the disability community are being ignored. Our chapter network is on the front line of this pandemic: some of the people with disabilities they serve have passed away from COVID-19, and others don’t have the supplies for staff to safely serve or quarantine. The direct support professional, or DSP, staff often help people with disabilities with very personal tasks that can’t be done from six feet away, yet the gear necessary to do these tasks safely is scarce. And in the coming weeks and months, we know that some service providers will be forced to close, leaving families like mine with nowhere to go.

But the fight to save Medicaid in 2017 showed that when we band together as one voice, we can make things happen.

Despite the magnitude of what we are facing as a country, this is the time we must once again share our stories. We must demand that Congress address the needs of the disability community in legislation to combat COVID-19.

Here is what Congress should do:

  • COVID-19 is particularly dangerous in congregate settings, and too many people with disabilities are currently in those settings, or at risk of unnecessarily ending up in those settings if there are not enough supports for services at home and in the community. Congress should ensure that legislation includes funds ($10-$15 billion) to support delivery of safer home and community-based services AND funding to support the hiring and hazard pay for the community workforce.
  • COVID-19 is requiring heroic work from health care professionals from around the country. Those professionals include DSPs and home health workers who do not have the personal protective equipment that they need to keep themselves and the people with disabilities that they serve safe. This will lead to illness and death. Congress should ensure that DSPs and home health aides have the supplies they need.
  • COVID-19 is closing programs all over the country, leaving people with disabilities and their families scrambling to come up with alternate supports. In many cases family caregivers won’t be able to work so that they can provide those services and supports. Right now, the legislation passed will not cover paid leave or paid sick leave for family members, like me, who may need to miss work to provide care for adults with disabilities and aging family members.
  • The COVID-19 pandemic economic impact is causing Congress to consider cash payments to individuals. People with disabilities should receive an equal amount of stimulus as everyone else without it impacting their access to Medicaid and other social support programs with strict asset limits. Congress should also boost Social Security and Supplemental Security Income payments to ensure that people with disabilities have the resources to protect themselves.

The asks of the disability community around this crisis are simple: recognize that whether it is individuals with disabilities, their family members, or the DSP workforce, #WeAreEssential.

Ready to act with us? Here are three easy ways:

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Disability Discrimination Complaint Filed Over COVID-19 Treatment Rationing Plan in Washington State

SEATTLE – As COVID-19 cases increase, the experience in other countries and predictions of U.S. health officials is that there will not be enough acute care services or equipment, such as ventilators, to meet the demand of patients with the virus who require intensive treatment.  Health care professionals in the United States are already developing protocols for responding to COVID-19, including treatment rationing that will determine who will and will not have access to life-saving treatment.   

Self Advocates in Leadership (SAIL), Disability Rights Washington (DRW), and The Arc of the United States (The Arc) filed a complaint with the U.S. Department of Health and Human Services Office for Civil Rights (OCR) about their grave concerns that the plans being put in place discriminate against people with disabilities in violation of federal disability rights laws, including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504) and Section 1557 of the Affordable Care Act (ACA) and place their lives at serious risk.  We call for OCR to take immediate action to address this discrimination and assist local jurisdictions and providers to develop non-discriminatory approaches before there are lethal consequences to application of these illegal policies.

The complaint focuses specifically on the plan released Friday by the Washington Department of Health and the Northwest Healthcare Regional Network that even those who developed the plan admit “is not going to be pretty.”

“I know already that intellectually disabled people get denied care because of being seen as lacking value,” said Ivanova Smith, Chair of Self Advocates in Leadership and individual complainant in the letter filed today with HHS OCR. “I deserve the same rights as anyone else. These policies discriminate against me and put my life at risk.”

Published descriptions of the goals and flow charts in the WA DOH and NHRN plan mirror the existing policy of the state-run University of Washington Medical Center (UWMC), which gives priority to treating people who are younger and healthier and leaves those who are older and sicker—people with disabilities—to die.    

A Seattle area patient of the University of Washington Medical Center explained that “I am concerned that a doctor will see my diagnosis of cystic fibrosis in my chart and make lots of erroneous assumptions about me. Cystic fibrosis often comes with significant breathing difficulties and a life expectancy of 30 years,” said Rose, not her real name due to fear of retaliation. “However, tests show that I have better breathing capacity than most people without cystic fibrosis and although I’m 28 years old, I have never been hospitalized and I am not anywhere close to dying. If I get COVID-19 and need intensive treatment like a ventilator, I fear the person making decisions about who gets treatment and who doesn’t will see my file among dozens or even a hundred or more people all competing for limited spots and my diagnosis will stand out and be used to exclude me from getting treatment despite what my individual medical tests and record say.”

Rose’s case shows how this plan will have a heavy impact on people with disabilities.  While medical knowledge of COVID-19 is constantly evolving, it is known that having an underlying medical condition heightens the effect of the virus. The conditions frequently mentioned include compromised immune, respiratory, cardiovascular and endocrine systems. All of these are common symptoms of many different physical disabilities and when significant enough form the basis of the disability on their own.

“The disability community is a broad, inclusive community where individuals with a variety of unique life experiences join forces to fight the many ways they are similarly discriminated against. We will not sit by as members of our community are left for dead. We stand up for those with preexisting disabilities and those with newly acquired disabilities who are impacted by COVID-19. We implore OCR to rein in and provide urgently needed guidance to the health care professionals who are prepared to relegate members of our community to die,” said David R. Carlson, Director of Advocacy, Disability Rights Washington.

“As COVID-19 sweeps our country, we are reminded once again that for far too long, the lives of people with disabilities have been undervalued. It is cruel that a person with a disability seeking medical treatment during this pandemic may not receive the care they need or they may be left to suffer or die because they are seen as less than or other. It is urgent that the federal government make very clear right now, on the front end of this health emergency, that it will swiftly enforce federal laws that protect against medical rationing plans discriminating against people with disabilities. We know this is just the beginning, and that there are many more days and months to come. The federal government must get it right, now, from the start. The lives of millions of people with disabilities across the nation are at stake – and those lives do have value,” said Peter Berns, CEO, The Arc.

The complaint stresses that OCR has a very brief moment to intercede. “If OCR fails to act swiftly to clearly and firmly articulate the violation of civil rights implicated by the rationing plan about to be unveiled in Washington, there will be no way to undo the lethal outcome of the discriminatory plans that have been formulated without OCR’s guidance. We request that you enforce the obligations of the healthcare professionals in Washington to develop non-discriminatory approaches to the delivery of care before it is too late.”

“Even in the midst of the current crisis, Washington State must abide by its obligation to not discriminate against people with disabilities. The complainants are on the front lines of a vital civil rights struggle. Their lives are at stake. I urge the HHS Office for Civil Rights to take swift action to protect them,” said Ari Ne’eman, Visiting Scholar with the Lurie Institute for Disability Policy at Brandeis University.

Complainants are represented by their counsel who are available for comment:

David Carlson, Disability Rights Washington

davidc@dr-wa.org

Shira Wakschlag, The Arc of the United States

Wakschlag@thearc.org

Sam Crane, Autistic Self Advocacy Network (ASAN)

scrane@autisticadvocacy.org

Jennifer Mathis, The Bazelon Center for Mental Health Law

jenniferm@bazelon.org

Cathy Costanzo and Alison Barkoff, Center for Public Representations

ccostanzo@cpr-ma.org; abarkoff@cpr-us.org

Samuel Bagenstos

sbagen@gmail.com

Close up of a microscope

Coronavirus Relief Bill: The Arc Fights for Disability Community

The Arc is pleased that Congress is recognizing the unique and vital needs that people with disabilities have when facing the COVID-19 pandemic. The emergency relief bill introduced in the U.S. House of Representatives today includes important and specific measures that would help mitigate the potentially catastrophic impacts of the novel coronavirus on millions of people with disabilities.

As we grow increasingly concerned over the threat of COVID-19 to people with disabilities, their families, and the workforce that supports them, we are encouraged that the House bill includes increased federal reimbursement for state Medicaid programs, which will help the uninsured gain access to COVID-19 testing, emergency requirements for all health insurers to cover testing, expanded nutrition assistance, and paid sick days and paid leave.

We are glad to see that the paid sick time and paid leave provision could be used to care for loved ones who are “otherwise in need of care.” That would cover workers who take time off to care for a loved one with a disability who has lost their primary source of care due to the new coronavirus.

As the legislation moves through Congress, we are advocating for specific funding to support the direct support professional workforce that supports people with disabilities, whose wages largely come from Medicaid, and that they are covered by both paid sick days and paid leave policies put in place by this legislation. Further, people with disabilities must be able to have access to a 90-day supply of medication and medical supply re-fills.

“This bill addresses many of the needs of people with disabilities in this global crisis. As the coronavirus relief bill moves through Congress, the paid sick days and paid leave policy must include funding to cover our direct support workforce,” said Peter Berns, CEO, The Arc. “We fear that without appropriate action by Congress and President Trump, the coronavirus pandemic could lead to further exacerbation of the workforce crisis and the unnecessary placement of people with disabilities and aging adults into institutions and other congregate settings in violation of their rights and posing risk to their health.”

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The Importance of Paid Leave: A Sibling Perspective

By Nayma Guerrero, Member of The Arc’s National Sibling Council

My family is everything.

Nayma and her family

My younger brother is 23 years old. He loves computer science, animation, and art and design. He also enjoys working out at the gym. Things are sometimes challenging for my brother, who has autism, intellectual disability, attention deficit disorder, and depression. Then there’s my sister. Like many 14 year olds, she loves the mall. She also plays soccer and basketball, and likes playing with her dolls. I admire my sister for sticking to it at school, despite having learning disabilities.

Like a lot of families, the day starts at my parents’ house in controlled chaos. My mother takes on what seems like the biggest challenge of the morning shared by moms everywhere: getting my brother and sister out of bed! A true supermom, my mother helps both of them get their school clothes together and makes sure they eat breakfast every day. She truly believes breakfast is the most important meal of the day. After they eat, my mother drives my brother and sister to school before taking care of the grocery shopping and errands.

Both of my parents are very hard workers and make sure my siblings’ needs are met every day. My father works fulltime, so my mom is usually the one who is taking care of my brother and sister.  My brother requires a lot of care, attention, and daily reminders to make sure he’s dressed, gets to school on time, and takes his medication.

A few years ago, my mother ended up in the emergency room. It turned out to be life threatening. My mother needed emergency surgery. We were shocked and worried as any family would be. After her surgery, we were told my mother would need to be on bed rest for about two weeks minimum with little movement. She would need a lot of assistance to get around the house, use the restroom, and shower. We were concerned for my mother but also for my siblings.  My mother is the person my brother depended on the most. And my sister was only 10 at the time.  

My father and I realized it was up to us to help my mother, my brother, and sister. For my father, taking time off meant he didn’t get paid and it was already hard for my family to make ends meet – still is.  I was also working hard, but not getting full time pay or health benefits of any sort. I was working just under 40 hours a week and therefore, part time. Calling off also meant no pay for me. It was really hard for my father and myself to work out a schedule where we could both help my brother with his needs and care for my little sister and my mother. It was also hard because my brother has a difficult time trusting other people, so he needed us. Sometimes, there is just no substitute for family.

Now imagine what it was like for us to shift to relying on one income – we had to save every penny for rent and bills, that’s it. I didn’t know how I was going to make my car payments. We were barely getting by.

Paid leave from our jobs would have helped my family at a time when we needed it most. If I would have had access to paid leave, I would have been able to help my family without losing my pay. My father wouldn’t have had to call out of work with no pay and risk losing his job. I also wouldn’t have had to go some days without pay. I was also scared that my job was going to fire me because I had to call out. With paid leave, we would have been able to provide my brother and sister with better care, while my mom recovered from surgery.

There are many families like mine. When the unexpected happens, family members need to be able to be there for each other – and still keep their jobs.  The U.S. needs a paid leave system so that families like yours and mine can care for loved ones when they need our help.

A man sits as someone holds a tablet, training him on how to use a machine for a job

New Video: Direct Support Professionals Need Our Support

The Arc celebrates “National Direct Support Professionals Recognition Week” beginning September 8, 2019. Direct support professionals (DSPs) play a fundamental role in the lives of people with disabilities. Their presence and assistance allow people receiving services to lead independent and full lives.

Direct support professionals help people with disabilities manage personal care, communication, household tasks, building relationships, and navigating the community. DSPs are invaluable to the disability community and the service systems that rely on their ability to keep people out of institutional settings.

But DSPs are paid low wages, and turnover is high. The result is a workforce crisis.

The *numbers are staggering for DSPs:

  • $11.76 average hourly wage
  • 15% of agencies provide DSPs with health insurance
  • 46% average state-wide turnover rate
  • 12% overall vacancy rate
  • 38% of DSPs left their position in less than 6 months

This workforce crisis has real-life impacts on DSPs and people with disabilities. Without consistent support from a well-paid and trained workforce, individuals with disabilities do not receive the proper services they need to live meaningful lives.

To better understand why DSPs need our support, watch our new video.

*National Core Indicators

A woman faces away towards a window, sitting in a chair with sad body language.

A Call to Action: We Must Do Better for People With I/DD and Mental Health Needs

By Jennifer Alexander and Katy Schmid

Up to 40% of people with intellectual and developmental disabilities (I/DD) experience co-occurring mental illness. As a former direct care worker and special educator, we both had seen firsthand many issues that people with I/DD and mental health needs faced in our work. Even still, we were unprepared for the level of need our journey revealed.

Through grants with partners Boston UniversitySelf Advocates Becoming Empowered, and the Family Support Research and Training Center at the University of Illinois at Chicago, we met with people with I/DD and mental health needs, families, and disability, education, and mental health professionals.

In meetings around the country and through a nationwide survey, we heard people share stories, challenges, and tears.

Here are some of the heartbreaking stories that we heard (you can find more takeaways and trends in this brief). They serve as a call to action that we can—and must—do better and work together to make the world better for people with I/DD and mental health needs and their families.

“People think that we are bad people, that our family members are bad people.”

People with I/DD and mental health needs and their families often felt that people did not understand them or were judging them when they would talk to others in the community. They felt that others may not believe or value them when they shared about their life. They also felt that they would be judged for any crises or situations that may occur. Even when they would go to mental health or I/DD support groups, they felt other members did not understand what they were feeling or going through. People with I/DD and mental health needs and their families reported feeling lonely and isolated, with very few people to rely on for social or emotional support.

“I went to one therapist and I talked to them about all of the anger that I had…Instead of supporting me…he attacked me.”

Disability, mental health, and education professionals frequently lack training or knowledge around I/DD and mental health needs. Professionals may know how to support people with either I/DD or mental health needs, but often do not know how to support people with both concerns. Many with I/DD and mental health needs feel like they do not get adequate support from professionals because they do not know promising practices or how to tailor services. People with I/DD and mental health needs and their families also feel that professionals may also set unrealistic goals or targets for families because they don’t understand what a family’s real life is like each day. Several participants also expressed that professionals will refuse to provide services to a person because of their dual diagnosis.

“We don’t have the services and support we need. We are waiting for the next crisis to occur.”

People with I/DD and mental health needs often end up in a cycle of hospitalization, a return to home, and re-hospitalization. This may occur for several reasons: they may have experienced additional trauma in the hospital, they did not get the right support in the hospital, or there may be no step-down supports available and accessible to people with I/DD and mental health needs after hospitalization. Many families reported that they often feel that they are in a continual crisis cycle and that they have no way to escape this pattern because of a lack of effective supports.

“Instead of helping us, the systems fight each other about who will pay.”

Both the disability and mental health systems are extremely complicated to work with and navigate. People with I/DD and mental health needs and their families often struggle to identify resources or services in each system, to determine whether they are eligible for services, and to understand whether insurance will pay for the services a person and family need.

This is made more complicated by the way these systems determine who will pay for the services. The disability and mental health systems do not often talk with each other to determine eligibility and payment. Frequently, the family feels caught in the debate about which system will pay for services. The result: long wait times to receive services and having to pay out of pocket.

We Must do Better: A Call to Action

In addition to the challenges that were shared during our sessions, people with I/DD and mental health needs, their families, and professionals also shared their expertise with us on what our society do to better support them. They identified the following activities:

  • Develop trainings—most notably a nationwide, replicable training around I/DD and mental health for disability, education, and mental health professionals.
  • Support systems change activities that improve navigation and communication between the I/DD and mental health systems.
  • Support research to further develop evidence-based mental health treatments for this population.
  • Support the development of programs to improve access to quality mental health care (regardless of insurance status).
  • Develop and improve access to support groups for people with I/DD and mental health needs and their families to help them avoid feelings of isolation and loneliness.
  • Create public awareness campaigns to counteract stigma and misconceptions around I/DD and mental health needs.

READ THE FULL BRIEF

This summer, The Arc held focus groups in Florida, Indiana, and Maryland with professionals in the disability, education, and mental health fields. These focus groups lead us to develop further recommendations around this national training. We plan to release an updated brief this fall with these recommendations.

We also hope to continue to work around the country with the incredible people, families, professionals, research groups, and training centers that are dedicated to advancing the effort to support these families. Together, we can work together to help the people with I/DD and mental health needs and their families nationwide.

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Talk About Sexual Violence: James’ Story

April is Sexual Assault Awareness Month. Sexual assault and violence disproportionately affect people with intellectual and developmental disabilities (I/DD), with findings from NPR revealing that people with I/DD are assaulted at seven times the rate of people without disabilities. The first step to tackling this epidemic is talking about it. Read more from one survivor:

James Meadours smiles at the camera in a selfie, wearing a navy blue polo shirt and glasses.

I never thought lightning could strike twice in the same place, but in my life it happened. I was sexually assaulted four times during my life and this is not uncommon for men or women with disabilities. I want to share the last time it happened to me.

I was looking for a Church that welcomed people including those with disabilities. A friend encouraged me to join him for a Church service and when I was there I met a member who was deaf and wanted to teach me sign language.  I thought we were becoming friends. One time we spoke on the phone and he asked if I was gay, I told him I was not. We got together the day before Church at my home and he began to be sexual with me. Even knowing I was not gay, he still approached me. Again, I told him I was not interested and let him know by shaking my head “NO” and backed away. I used sign language to say NO but he signed YES.

The next day when I went to Church I didn’t tell anyone.  I felt ashamed and afraid if I told anyone I could be hurt. I reached out to the pastor and nothing was done and out of frustration I told my friend and he called 211 to make a report on my behalf with my permission. 

I went to the hospital to make sure I was OK. People listened and took the time to help me. The SANE Nurse (Sexual Assault Nurse Examiner) was gentle and understanding. I wanted to make a formal report to law enforcement and hoped the officer would be kind and help me feel at ease. Later in the week an officer made a home visit and gathered evidence. The kindness the officer showed me is not typical.

I pressed charges and went to court. He went to jail.

My friends believed me and were helpful at different stages, but when I approached the local rape crisis center two weeks later they didn’t know how to provide support since they do not usually help many men, especially men with disabilities. It was a new experience for them, but despite them not having training, they tried to be helpful.

No one taught me the steps to recovery. I did remember what the SANE nurse told me – she looked me in the eye and said I needed to take care of myself before helping others who have suffered. After two years of recovery work, I realized when I was at a meeting to discuss sexual assault that I wanted to tell my story. This was the beginning of my journey to become an advocate to support others with disabilities who have suffered with sexual assault. I am now a national advocate and speaker at many conferences sharing my story and recommending changes so others can find healing and if they want they can become part of the MeToo movement.

As Sexual Assault Awareness Month draws to a close, join us in the movement to Talk About Sexual Violence! And, sign up for our criminal justice emails to receive resources, timely news, and ideas on how to advocate and get involved throughout the year.

Our Call to Action

Recommendations for Schools and Students

  1. Provide age-appropriate sex education for students with disabilities.
  2. Discuss safe vs. unsafe relationships.
  3. Identify who to report a sexual assault incident to.
  4. Ensure a personal safety plan is included in Individualized Education Plans (IEPs).

Recommendations for Individuals

  1. Reach out to a trusted person if you have experienced sexual assault.
  2. Learn about your rights as a crime victim and what can happen if you report.
  3. Locate and attend sexual assault support groups.
  4. If you are interviewed by law enforcement, request privacy.
  5. Know your rights about your accommodation needs.

Recommendations for Disability Service Providers

  1. Require sexual trauma training for providers.
  2. Demand deeper background checks for all employees.
  3. Listen and believe when someone discloses sexual assault.
  4. Provide accommodations when a person reports an incident.
  5. Ensure privacy when a person reports sexual violence.

Recommendations for Criminal Justice Professionals

  1. Required training for first responders, law enforcement, the courts, and sexual assault and rape crisis professionals about serving crime victims with I/DD.
  2. Learn effective strategies for interviewing crime victims with disabilities.
  3. Use disability specific accommodations.
  4. Consider community outreach to reduce fear of talking with law enforcement.
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Talk About Sexual Violence: Kecia

April is Sexual Assault Awareness Month. Sexual assault and violence disproportionately affect people with intellectual and developmental disabilities (I/DD), with findings from NPR revealing that people with I/DD are assaulted at seven times the rate of people without disabilities. The first step to tackling this epidemic is talking about it. Read more from one survivor:

Kecia Weller poses for a photo against a gray mottled background with a blue shirt on.

“Get involved. Help people with disabilities learn about safe relationships and prevention of sexual assault. Special attention must be provided at peer advocacy meetings to teach people how to support survivors when they report the abuse and create their own safety plans. There are many ways people with disabilities can be supportive. A few ideas include volunteering to be a listener on a hot line, educating school teachers about the frequency of abuse against students with disabilities and most important, learning more yourself about the alarming rate of sexual and other kinds of assault happening to men and women with disabilities.”

Read more of Kecia’s story.

During Sexual Assault Awareness Month, join us in the movement to Talk About Sexual Violence! And, sign up for our criminal justice emails to receive resources, timely news, and ideas on how to advocate and get involved throughout the year.

Our Call to Action

Recommendations for Schools and Students

  1. Provide age-appropriate sex education for students with disabilities.
  2. Discuss safe vs. unsafe relationships.
  3. Identify who to report a sexual assault incident to.
  4. Ensure a personal safety plan is included in Individualized Education Plans (IEPs).

Recommendations for Individuals

  1. Reach out to a trusted person if you have experienced sexual assault.
  2. Learn about your rights as a crime victim and what can happen if you report.
  3. Locate and attend sexual assault support groups.
  4. If you are interviewed by law enforcement, request privacy.
  5. Know your rights about your accommodation needs.

Recommendations for Disability Service Providers

  1. Require sexual trauma training for providers.
  2. Demand deeper background checks for all employees.
  3. Listen and believe when someone discloses sexual assault.
  4. Provide accommodations when a person reports an incident.
  5. Ensure privacy when a person reports sexual violence.

Recommendations for Criminal Justice Professionals

  1. Required training for first responders, law enforcement, the courts, and sexual assault and rape crisis professionals about serving crime victims with I/DD.
  2. Learn effective strategies for interviewing crime victims with disabilities.
  3. Use disability specific accommodations.
  4. Consider community outreach to reduce fear of talking with law enforcement.

 

The Arc logo

Talk About Sexual Violence: Chris’ Story

April is Sexual Assault Awareness Month. Sexual assault and violence disproportionately affect people with intellectual and developmental disabilities (I/DD), with findings from NPR revealing that people with I/DD are assaulted at seven times the rate of people without disabilities. The first step to tackling this epidemic is talking about it. Read more from one survivor:

Chris Miller poses for a selfie in a blue shirt.

Chris Miller

“For as long as I can remember society has had the idea that men do not show emotion. We are told to be strong, not to cry or share feelings. These ideas are communicated from an early age; the expectations of manhood are very high and never include opening up about any type of abuse, especially sexual assault and violence perpetrated against them, as an adult or child.

We are told and it is believed that rape and assault do not happen to us – but the fact is that 1 in 6 men have been victims of sexual assault and the rate of men with disabilities is even higher. Men with disabilities face an even more difficult hurdle of not being believed or seen as credible when they do report because they have a disability, and can be even more difficult for those who are LGBTQ, who are at greater risk for sexual assault due to their sexual orientation. Some people with disabilities communicate in non-traditional ways, meaning not verbally or use a communication device, so they are often looked at as not reliable witnesses or just simply not believed. Another reason people do not speak up is simply a lack of having someone they trust. Many live segregated lives and reporting an assault can be threatening and result in loss of home, caregiver or job. Those in authority have looked the other way when we have disclosed. When disclosure happens we are not asked how we feel. For those that are not able to tell, they act out their fear and frustration and then are medicated and the abuse continues. Many of us do not believe there will be any consequences even if we do tell. This is a deep-reaching issue that we must deal with to have a healthy, inclusive and safer society. Every sexual assault survivor needs to know they matter, are respected and can be safe.” 

During Sexual Assault Awareness Month, join us in the movement to Talk About Sexual Violence! And, sign up for our criminal justice emails to receive resources, timely news, and ideas on how to advocate and get involved throughout the year.

Our Call to Action

Recommendations for Schools and Students

  1. Provide age-appropriate sex education for students with disabilities.
  2. Discuss safe vs. unsafe relationships.
  3. Identify who to report a sexual assault incident to.
  4. Ensure a personal safety plan is included in Individualized Education Plans (IEPs).

Recommendations for Individuals

  1. Reach out to a trusted person if you have experienced sexual assault.
  2. Learn about your rights as a crime victim and what can happen if you report.
  3. Locate and attend sexual assault support groups.
  4. If you are interviewed by law enforcement, request privacy.
  5. Know your rights about your accommodation needs.

Recommendations for Disability Service Providers

  1. Require sexual trauma training for providers.
  2. Demand deeper background checks for all employees.
  3. Listen and believe when someone discloses sexual assault.
  4. Provide accommodations when a person reports an incident.
  5. Ensure privacy when a person reports sexual violence.

Recommendations for Criminal Justice Professionals

  1. Required training for first responders, law enforcement, the courts, and sexual assault and rape crisis professionals about serving crime victims with I/DD.
  2. Learn effective strategies for interviewing crime victims with disabilities.
  3. Use disability specific accommodations.
  4. Consider community outreach to reduce fear of talking with law enforcement.

 

The Arc logo

Sexual Assault Awareness Month: Shining the Light on a Silent Epidemic

Chris Miller, James Meadours, and Kecia Weller

Every day, in every community across the U.S., people with intellectual and developmental disabilities (I/DD) are being sexually assaulted. Too many have a story to tell, and yet few are ever heard. The Talk About Sexual Violence project aims to change that by educating health care providers about sexual violence in the lives of people with I/DD. Here are just three snapshots of this epidemic, shared directly by those affected by it:

Chris Miller

Chris Miller poses for a selfie in a blue shirt.For as long as I can remember society has had the idea that men do not show emotion. We are told to be strong, not to cry or share feelings. People don’t believe that rape and assault happens to us, but the fact is that 1 in 6 men have been victims of sexual assault and the rate of men with disabilities is even higher. Many of us do not believe there will be any consequences if we tell someone about what happened to us. This is a deep reaching issue that we must deal with to have a healthy, inclusive and safer society. Every sexual assault survivor needs to know they matter, are respected and can be safe.

 

James Meadours

I never thought lightning could strike twice in the same place, but in my life it happened. I was sexually assaulted four times during my life and this is not uncommon for men or women with disabilities. My friends believed me and were helpful at different stages, but when I talked to the local rape crisis center two weeks after the rape, they didn’t know how to provide support since they do not usually help many men, especially men with disabilities. It was a new experience for them, but even though they didn’t have any training, they tried to be helpful. No one taught me the steps to recovery. I did remember what the SANE nurse told me – she looked me in the eye and said I needed to take care of myself before helping others who have suffered. After two years of recovery work, I realized when I was at a meeting to discuss sexual assault that I wanted to tell my story. This was the beginning of my journey to become an advocate to support others with disabilities who have suffered with sexual assault. I am now a national advocate and speaker at many conferences sharing my story and recommending changes so others can find healing and if they want they can become part of the MeToo movement.

 

Kecia Weller

Kecia Weller poses for a photo against a gray mottled background with a blue shirt on.Get involved. Help people with disabilities learn about safe relationships and prevention of sexual assault. Special attention must be provided at peer advocacy meetings to teach people how to support survivors when they report the abuse and create their own safety plans. There are many ways people with disabilities can be supportive. A few ideas include volunteering to be a listener on a hot line, educating school teachers about the frequency of abuse against students with disabilities and most important, learning more yourself about the alarming rate of sexual and other kinds of assault happening to men and women with disabilities.

 

Learn more about educating health care providers about this silent epidemic and supporting people with I/DD to tell their truth. Men with disabilities and other marginalized individuals are especially alone and need outreach now more than ever. This Sexual Assault Awareness Month, join us in the movement to Talk About Sexual Violence!