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

Marca Bristo

Marca Bristo, a Powerful Advocate for People with Disabilities, Dies at 66

The Arc mourns the loss of Marca Bristo, a remarkable champion in the fight for disability rights. Bristo died Sunday after a battle with cancer.

We are grateful for Bristo’s leadership in helping to pass the Americans with Disabilities Act, our nation’s major step forward in disability rights. Almost 30 years later, the historic progress made by the ADA remains critical in ongoing efforts to ensure that people with disabilities are included in society in ways that are accessible and fair. Bristo, who became paralyzed in an accident at the age of 23, also founded Access Living in Chicago and the National Council on Independent Living. The Arc has worked with Bristo and her organizations over the last several decades to advance our shared core values of independent living for people with disabilities, and their rights.

Sadly, we have lost a role model and leader in our community. Bristo’s vision and devotion to changing the perception of how this country sees disability continue to shape our society for the better. Her relentless advocacy at the local and national levels were instrumental in realizing many of the rights people with disabilities have today – and we celebrate her life and commitment. Bristo was 66. Please take the time to read these news pieces about her impactful life: The New York Times and Chicago Sun-Times.

The Arc logo

New Videos from The Arc Spotlight Need to Close Institutions, Support Community Living

In 2019, 37 states still have institutions where people with intellectual and developmental (I/DD) live away from their families and communities. Some may recall the horrible investigative reports over the last few decades that showed the terrible conditions in institutions, but many people fail to realize the facilities still exist and that state and federal dollars are still funding them. The Arc of the United States was founded by families trying to eliminate the need for those institutions and to get their family members with disabilities back home and included in their communities. While we have come a long way, there remains much to be done from state capitals to our nation’s capital.

The Arc developed this video to highlight the issue and to educate the general public about institutions, and to urge action to close the remaining institutions and support people with disabilities, no matter their level of need, back into the community.

At The Arc we also understand that it is more important than ever that we educate the general public about why inclusion and acceptance matters and that they join the fight to ensure that the progress that we have made as a disability community is not stalled.

We have to talk about the fact that institutions remain open, and how those dollars would be better spent in the community. We have to educate the general public about how Medicaid makes life in the community possible. We have to protect Medicaid from threats of cuts and caps that would drastically hurt people with I/DD.

To illustrate community living, check out our new video.

On the policy front, we have to talk to state and federal legislators about the fact that the federal Medicaid law that we fought so hard to save just a few years ago needs a face lift. Right now, services in institutions, nursing homes and other more segregated settings are mandatory while home and community-based services (HCBS) are optional under the law.

These are complex issues, but the basic fact remains everybody benefits when people with disabilities are part of the fabric of their communities. That doesn’t come by keeping people locked away in institutions – it comes through conversation, inclusion and acceptance that we are all better together.

Nancy Murray from The Arc of Greater Pittsburgh Selected to Serve on National Family Caregiver Council

The Arc is honored that Nancy Murray, the President of The Arc of Greater Pittsburgh at ACHIEVA, has been selected by the Administration on Community Living to serve on the RAISE Family Caregiving Advisory Council. Nancy brings a deep personal and professional understanding of the caregiver crisis facing millions of families and people with intellectual and development disabilities (I/DD).

Nancy is the mother of two adult children with Down syndrome and has been a caregiver to both of her aging parents. Nancy has also been a powerful voice in the disability field for over 40 years in the areas of family support, advocacy, public policy, supports coordination, and health care. As a member of the Family Caregiving Advisory Council, Nancy will help develop recommendations to the Secretary of the U.S. Department of Health and Human Services (HHS) on effective models of family caregiving and support to caregivers, as well as ways to improve coordination across federal programs.

The Council was established by the RAISE Family Caregivers Act enacted last year to help address the growing national caregiver crisis for family members and persons with I/DD, seniors, veterans, and others. This crisis for caregivers is reflected in the findings of The Arc’s Family & Individual Needs for Disability Supports (FINDS) 2017 Survey which shows that nearly two thirds of caregivers surveyed are employed and 45% of respondents provide more than 80 hours of care per week. Not surprisingly, nearly half of FINDS caregivers report feeling “very or extremely stressed.” The findings also underscore the need for accessible respite programs: 92% of caregivers say they have difficulty finding respite care.

We are confident Nancy will help leaders in the federal government find solutions for families. The RAISE Family Caregiving Advisory Council will hold its first meetings on August 28 and August 29, 2019 in Washington, D.C. and will be live streamed.

For more on Nancy’s contributions to the I/DD community, please click here.

Introducing The Arc’s 2019 – 2020 National Sibling Council!

We are excited to welcome eight new members to our 2019-2020 National Sibling Council! They bring a wide range of expertise and passion and we are fortunate to be working with them for the next term year. The Sibling Council fosters active involvement of siblings of individuals with intellectual and developmental disabilities (I/DD) in The Arc’s grassroots advocacy efforts nationwide. Meet our new council members and learn more about why they joined the Sibling Council and what motivates them to promote and protect the rights of individuals with I/DD throughout the country!

Caitie Jones, Alaska

My brother, Chris, has Down syndrome and lives in Anchorage, Alaska. I have been a very active member of Chris’ support team and have been working in the disability field for five years. Currently, I am the Family Partner at Hope Community Resources, Inc., assisting families in accessing resources throughout the community and am working on opening a center where families of kids with disabilities can come together for support. I joined the sibling council to connect with other siblings and to continue advocating for people with disabilities.

Cameron Kell, Missouri

There are several reasons I wanted to join The Arc’s National Sibling Council.  First, I am grateful for the work The Arc has done to benefit my brother, Nathan. As an advocate, I want to play a role in The Arc’s efforts to promote and protect the rights of people with I/DD across the country.

Karen McDowell Downer, Tennessee                                                                           

My sister, Mindy, is 61 and lives in a residential facility in their hometown. As Mindy’s sister and supporter, I want to advocate for positive change in the continuity of her care and support systems. The most important issue Mindy currently faces is staff turnover among her direct service providers (DSP) and licensed professional nurses (LPN) due to their insufficient pay. I believe that this issue among DSPs and LPNs are representative of late in life issues people with I/DD will face — this is when siblings must step up.

Kim Keprios, Minnesota

I am the proud sibling of Mike Keprios, my constant teacher of what matters, and how I found The Arc and my rewarding career with the organization. I am grateful for the collective efforts of The Arc to change policies, attitudes, and lives with and for people with I/DD, their families, and our communities. New challenges emerge with our aging demographics growing. I am committed to the advocacy work The Arc is leading and raising awareness of unique needs siblings face. The Arc’s National Sibling Council provides me the opportunity to serve, connect with siblings, and advocate with and on behalf of people with I/DD.

Mary Valachovic, Massachusetts

I am the Executive Director of The Arc of Greater Plymouth in Plymouth MA. Although I have over 25 years of work experience supporting people with disabilities, my true journey began when my brother Matthew was born. Matthew has significant disabilities and has served as my inspiration over the years, both personally and professionally. It is Matthew that led me to The Arc’s National Sibling Council. At age 12, I became an active member of her local chapter youth group and my passion continues to this day. I am committed to the power of listening to people with disabilities and their families and am honored to serve on The Arc’s National Sibling Council.

Nayma Guerrero, California

I joined The Arc’s National Sibling Council because I know that my role as a sibling is very important in the life of my brother, Eric, who has autism. My passion and eagerness to advocate for others like my brother is one of the main reasons I am active with The Arc. I hope to make a difference in my community and to continue encouraging other siblings to become involved and a part of their siblings’ lives.

Rachel Hafner, North Dakota

I am the Executive Director of The Arc, Upper Valley in Grand Forks, North Dakota. I was 13 years old when my brother Timothy was born. Sibling issues have always been very important to me and have been the catalyst for the work I do as a professional. I hope that by serving on The Arc’s National Sibling Council, I can help shine a light on the important role siblings play in the lives of their brothers and sisters throughout their lifetime.

Sandra Tucker, Colorado

I am the Executive Director at Sibling Tree and my brother, David, is on the autism spectrum. I joined The Arc’s National Sibling Council because I believe that the sibling voice is important and needed in order to advocate for the unique needs of siblings, as well as the needs of brothers and sisters with I/DD.

 

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.

#Handsoff: Why I Advocate to Stop the Shock

By Nicole Jorwic

Nicole and Chris Jorwic

People with disabilities are being tortured by shock devices at the Judge Rotenberg Center. These devices are worn by residents of JRC, an institution in Massachusetts for children and adults with disabilities. Staff members use remote controls to administer a shock to residents for perceived misbehavior.

This is despite the fact that there is a well-established body of evidence proving that there are alternative methods for behavioral supports for people with disabilities and other needs that do not include excessive force, pain, and fear. It continues to be shown that there is NO THERAPEUTIC benefit to these devices. The actions of the JRC remain a civil rights issue. With every day that passes without this rule being finalized by the FDA, the rights of people with disabilities and mental health issues will continue to be violated as they endure abuse and torture. We shouldn’t rest until this barbaric practice is halted and use of these devices are banned at the JRC and nationwide.

This issue is something that matters to me personally. My brother Chris is 29 and has autism. And it is my brother’s voice that I have heard during every tense Capitol Hill meeting, meeting with the FDA and submitting comments on why these tortious devices must be banned. This is a little ironic since my brother doesn’t use his voice to speak.

Chris types to communicate — and one thing that he always highlights when he is out training others on how to interact with people with disabilities, is that every behavior is a form of communication. Chris communicates with his behaviors too, and it terrifies me to know that if he were a resident at the JRC, he could very likely be shocked for trying to express himself or communicate his needs.

The FDA must act. All people with disabilities deserve the right to live free from the fear of torture. Continuing in their posture of inaction is to devalue the lives of people with disabilities. We will not stop fighting until we are able to STOP THE SHOCK. Learn more about how you can help.

 

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.

 

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.

 

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!