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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.

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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 IDD and Mental Health Needs

By Jennifer Alexander and Katy Schmid

Up to 40% of people with intellectual and developmental disabilities (IDD) experience co-occurring mental illness. As a former direct care worker and special educator, we both had seen firsthand many issues that people with IDD 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 IDD 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 IDD and mental health needs and their families.

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

People with IDD 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 IDD support groups, they felt other members did not understand what they were feeling or going through. People with IDD 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 IDD and mental health needs. Professionals may know how to support people with either IDD or mental health needs, but often do not know how to support people with both concerns. Many with IDD 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 IDD 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 IDD 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 IDD 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 IDD 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 IDD 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 IDD and mental health for disability, education, and mental health professionals.
  • Support systems change activities that improve navigation and communication between the IDD 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 IDD 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 IDD 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 IDD and mental health needs and their families nationwide.

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Talk About Sexual Violence: James’ Story

Sexual assault and violence disproportionately affect people with intellectual and developmental disabilities (IDD), with findings from NPR revealing that people with IDD 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 IDD.
  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 (IDD), with findings from NPR revealing that people with IDD 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 IDD.
  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 (IDD), with findings from NPR revealing that people with IDD 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 IDD.
  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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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 (IDD) 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 IDD. 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 IDD 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!

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#HandsOff Our Kids: Advocating Against Restraint and Seclusion

#HandsOff is a series on The Arc Blog. Each month, we feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

By: Erik Smith

I went to Washington last month to support my wife in sharing our family’s story about restraint and seclusion. A few weeks before, the new executive of The Arc Rhode Island Family Advocacy Network put out a call to find families who would be willing to provide testimony at a Congressional hearing on this topic. Needless to say, my wife Renee and I jumped at the opportunity. We had mixed feelings about making our family’s experience so public, but felt strongly that we needed to advocate for all families to help them avoid the painful and unnecessary practices of restraint and seclusion that our son Dillon, who has autism, had experienced repeatedly in kindergarten and the first grade.

Renee Smith sits in front of Congress testifying, as an audience sits behind her.

Renee started her testimony by describing what our daily lives used to be like. She recounted the regular instances of restraint and seclusion that Dillon experienced, the multiple calls to 911 made by the school, Dillon’s increasing dislike of school, his missed educational opportunities, and the overwhelming stress on our family. I felt proud of Renee as I watched her recount, sometimes through tears, how much harm this had caused our then 6-year-old son and our family as a whole, including our marriage and our jobs. Fortunately, Renee was able to end her testimony on a very positive note. After we moved Dillon to a different public school in the same district that uses positive behavior intervention and support, Dillon is thriving.

In preparing for the hearing, we had the chance to learn more about the history of federal legislation to limit restraint and seclusion. We learned about a law (the Children’s Health Act of 2000) that includes serious limits on these practices. The only problem is that it doesn’t include school settings.

As I listened to Renee, I was struck by the contrast between my professional and personal life regarding the limitations on restraint and seclusion. I am a nurse and I work in a long-term care facility. The Centers for Medicare & Medicaid Services (CMS) strongly regulate the use of restraints in LTC facilities, with these regulations to be enforced through state Health agency survey and certification. I have always been well aware of what I can and cannot do when our patients exhibit challenging behaviors. I have received training by my employer on patient’s rights, on what we are legally barred from doing, and on effective alternatives to restraint and seclusion. I see firsthand how this benefits our patients and staff alike. But as a parent, I see how the lack of such protections have hurt my son.

This point was made in 2009 by the former chairman of the House Education and Labor Committee, Rep. George Miller, the last time there had been a hearing on restraint and seclusion:

Federal law restricts the use of seclusion-restraints to emergency circumstances for children in hospitals and community-based residential treatment facilities and other facilities supported by federal dollars. Yet these rules do not apply to public or private school. This means an untrained medical professional is forbidden from inappropriately restraining a patient and, if they do, there are laws specifically targeted to address such behavior. But untrained classroom staff are abusing student in schools without any accountability because of a lack of federal oversight. Our children are bearing physical and emotional burden of a system designed to fail them”

It is now almost a full decade later. Far too many children like my son continue to be restrained and secluded in school. It is past time to correct this problem.

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Supreme Court Reaffirms Commitment to Clinical Standards, Not Stereotypes, in Determining Intellectual Disability in Death Penalty Cases

The U.S. Supreme Court issued a per curiam (published in the name of the Court rather than specific judges) opinion today reversing the Texas Court of Criminal Appeals (TCCA) and finding that Bobby Moore is a person with intellectual disability and his execution is prohibited by the Eighth Amendment to the U.S. Constitution’s ban on cruel and unusual punishment.

“The Arc applauds the Court’s decision today which again embraces the standards-based approach in determining intellectual disability for which The Arc has long advocated. When it comes to matters of life and death, there is simply no room for courts to ground their determinations of intellectual disability in outmoded and baseless stereotypes. The Arc is grateful to the Court for taking a strong stance today to ensure that its precedent on this issue is properly interpreted in jurisdictions around the country,” said Marty Ford, Senior Advisor, The Arc.

This is the second time Mr. Moore has sought relief from the Supreme Court and won. In 2017, in the same case, the Court rejected Texas’ use of stereotypical and outdated factors—rather than well-established clinical standards—to determine intellectual disability in death penalty cases on the grounds that they “create an unacceptable risk that persons with intellectual disability will be executed.” The Court then sent the case back to the TCCA to determine whether Mr. Moore had intellectual disability in light of its opinion. Following the TCCA’s 2018 finding that he did not have intellectual disability, Mr. Moore again petitioned for Supreme Court review. Notably, the prosecutor in Mr. Moore’s case—the district attorney of Harris County—filed a brief in support of Mr. Moore noting that, in light of the Supreme Court’s 2017 opinion, Mr. Moore is an individual with intellectual disability who cannot be executed.

In its opinion today, the Court noted that “Moore has shown he is a person with intellectual disability” and that the most recent TCCA opinion must be reversed because it continued to exhibit “lay stereotypes” of people with intellectual disability despite the Supreme Court’s clear instruction to rely on well-established clinical standards instead. Chief Justice Roberts, in a concurring opinion, noted that while he still believes the original Moore opinion “lacked clarity,” “it is easy to see that the Texas Court of Criminal Appeals misapplied it here…the court repeated the same errors that this Court previously condemned…” Justice Alito, joined by Justices Thomas and Gorsuch, dissented, noting that “The error in this litigation was not the state court’s decision on remand but our own failure to provide a coherent rule of decision in Moore.

The Arc filed amicus briefs on Mr. Moore’s behalf when he first went before the Supreme Court in 2016 and again when his case was remanded to the TCCA in 2017.

In its 2002 decision in Atkins v. Virginia, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with intellectual disability and banned their execution as cruel and unusual punishment under the Eighth Amendment. Subsequently, in Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. The Court’s 2017 and 2019 decisions in Moore v. Texas have strengthened this precedent by emphasizing the need to rely on well-established clinical standards—rather than stereotypes—in making intellectual disability determinations in death penalty cases.

The Arc has deep sympathy for the family and friends of the victim in this case, and we supported appropriate punishment of all responsible parties. The Arc did not seek to eliminate punishment of Mr. Moore or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with ID and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.

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The Arc Responds to Three-Month Extension of Money Follows the Person Passing Congress

Last week, the Medicaid Extenders Act of 2019 was signed by President Trump. A three-month funding extension for Money Follows the Person (MFP) was included in this bill. This program moves people with disabilities from institutions into the community by paying for programs not normally covered by Medicaid such as employment and housing services.

“Passage of this bill means individuals with disabilities who have been waiting to transition while funding for the MFP program was in danger, have the opportunity to move out of institutional settings and into the community. If the funding bill did not pass, MFP funds would have run out across the country. This is not only an investment in community-based services, but in the civil rights of people with intellectual and developmental disabilities.

“It is a powerful testament to the value of this program that this legislation was passed so early this Congress, especially after the unsuccessful attempts to cut Medicaid by billions of dollars last Congress. This victory belongs to advocates nationwide who have been actively working to support people with disabilities to live in their communities. We look forward to working with leaders in Congress who supported this legislation on a strategy for longer or permanent extension of MFP.” said Peter Berns, CEO of The Arc.