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Kecia’s #MeToo Story

/in , /by The Arc

WARNING: This article contains descriptions of sexual assault

Individuals with disabilities are seven times more likely to be victims of sexual assault than those without disabilities. Kecia, sexual assault survivor-turned-advocate, is one of those individuals. She was raped, but justice was denied to her because of the failings of our criminal justice system. This is her story, in her words.

Kecia #MeTooI met this man at a self-advocacy meeting and we had very similar hobbies. I invited Michael back to my house to play chess with me. As soon as Michael entered my house, he started to kiss me and then drag me towards the couch where he proceeded to rape me.

I called the police after Michael left to report the rape. They sent a female investigator to take my report. After asking me questions, the investigator told me they would interview Michael about the rape and get back with me. Michael lied and said I wanted to have sexual contact with him. I was informed by a detective later in the week that the case closed since it was a “he said/she said” incident. For the record, I absolutely didn’t want to have any sexual contact with Michael whatsoever.

Shaken up, I called my social service agency for help and reported the rape to my case manager. My case manager listened and filled out a Special Incident Report (SIR) without offering any additional support.

I checked back with my case manager but she didn’t respond back to me for many days. I had to keep calling her to get a response. I never received a copy of the SIR report.

I am unaware if my case manager reported my rape to APS because I never received a visit from a social worker. I am totally unaware if my case manager told anyone else about my rape because once she took my report, she simply stopped responding to me.

The system had totally failed me—law enforcement, my case worker, and the case management agency. As a result of the system failing to help me, I sunk into a deep depression for several years with very severe physical and psychological events.

I am healthy today because I was referred to an excellent in-patient program with specialized therapy and a structured follow up that continues today. I have been in recovery for three years and have gained strength and found my voice so I can speak of the rape incident now.

Today I am an Abuse Awareness Prevention Advocate with the earnest desire to help other individuals rise from abusive situations and become stronger, like I am. It is because of the rape incident that I am a very strong person and I love to help others.

Kecia’s #MeToo story is a stark reminder that society needs to be discussing the very real risk individuals with disabilities are facing every day, every hour, and every minute in this country. This month, NPR released a powerful series on sexual assault and disability that included testimony from survivors – completely in their own words.

This series is drawing national attention to the epidemic facing individuals with disabilities, and we must keep the momentum on this issue going. Only then will we be able to change these jarring statistics and make systemic changes to ensure no victim has to suffer alone. All victims must have a way to tell their stories when they are ready, to be heard and believed, and to get the help they need to move from victim to survivor – just like Kecia did.

Kecia is helping others speak out and get help in many ways. One way is by supporting the work of The Arc’s National Center on Criminal Justice and Disability® (NCCJD®). Kecia is a National Advisory Committee Member and is working with NCCJD to ensure people with intellectual and developmental disabilities have equal access to the justice system, and that criminal justice professionals are well-trained to understand disability issues. She is also featured in the Talk About Sexual Violence project, which is a compilation of resources for health care professionals, families, and advocates to help them know how to talk about and prevent sexual violence.

Every person has a role to play to STOP sexual assault and violence in the lives of people with disabilities. That includes you.

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#HandsOff: Medicaid Saved Spencer’s Life

/in /by The Arc

This is a new series at The Arc Blog called #HandsOff. Each month, we will 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. ###

Spencer and Erica

Spencer and Erica

My name is Erica, and my son Spencer and I live in Indianapolis, Indiana. I am a recruiter and Spencer is in the 5th grade.

Spencer is incredible. He has accomplished so much in 12 years. He was named the 2014 first ever Great American Museum Advocate by the American Alliance of Museums. He’s been a huge blues fan since the age of 3 and is the only kid to ever wish to meet BB King. He’s been to the White House and met Michelle Obama. His favorite subject to learn about is the civil rights movement. He loves magic and musicals, but if he had his choice he would spend all day sewing and making puppets. Incredible, right? Here is what makes his story even more incredible. He has done all of this with ½ of a brain.

Before Spencer was even born, he had a stroke. The stroke destroyed over 2/3 of the left side of his brain. He was diagnosed with Factor V Leiden blood clotting disorder, cerebral palsy, right side hemiparesis, seizure disorder, impulse control disorder and autism. Early on in the diagnosis I was told he would not walk or talk, and would undoubtedly have behavioral and impulse control issues. Not only does he walk but he can argue like a Supreme Court Justice. He functions with the use of only his left hand which leads to a lot of frustration. That coupled with the impulse control issues has made “behavior” his most difficult hurdle.

In April of 2016 when he was only 10, my worst nightmare as a mother became real.
Spencer was bruised from head to toe from punching himself. He was destroying our house daily and worst of all, he was saying he wanted to kill himself. He punched through two windows.

Spencer with Senator Donnelly (IN)

Spencer with Senator Donnelly (IN)

I was faced with the horrific decision of placing him in a 24-hour behavioral psychiatric unit. He had two five day stays within a month. It was the hardest time of our lives.

Once he got out of the psychiatric unit, Medicaid covered an additional 25 hours per week of intensive behavioral therapy. He was already getting a few hours a day covered at school, but getting the right amount of intensive therapy has made all the difference.

The additional Medicaid hours saved his life and at the very least kept him out of a long term facility and allowed him to work on learning coping skills in his natural environment.

Here we are not even two years later and because of that therapy through Medicaid, he is happy, healthy and controlling his anger and impulses. Medicaid has been a life saver for us.

Spencer is a different kid now. A much healthier and happier kid. Most importantly, he’s alive! We just came back from out 3rd trip to New York in a year. Two years ago, I couldn’t take him out of the house for fear he would hurt himself or someone else and now he navigates the bustling streets of New York like a native.

I asked Spencer what he would say to the Congress or the President about the importance of Medicaid in his life. Much more eloquent than I could ever hope to be, here is his response in his own words:

“No problem mom, they can just come to my house. Yeah. I’ll show them holes in the wall where I used to punch it. I’ll show them what used to be my quiet room and how you had to fill it with mats and glass I couldn’t break so I wouldn’t hurt you or myself. I’ll show them how now that room has no more of those things but now has my sewing machine because I’m a big boy and can control my anger. I’ll even tell them how I used to punch you because I was so mad all the time. I’ll tell them I broke your nose. I’ll show them that now I just have to work on my verbal junk but I don’t hit you anymore. I’ll show him everything mom and then they will understand. Just invite them over and I’ll show them. Tell them to bring all their friends. I’ll show them too.”

Mr. President, Members of Congress: you are cordially invited to my house at any date and time that works for you. Bring your friends. My 12 year old has some things he wants to show you.

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The Arc Celebrates Law Enacted to Support Family Caregivers

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act being signed into law by President Trump.

“Most people with intellectual and developmental disabilities (IDD) in our nation live with family caregivers, and nearly 900,000 of these family caregivers are over the age of 60. For many individuals with IDD, their caregivers mean a life in the community with their family and friends. Without support for these caregivers, individuals with IDD could face seclusion in institutional settings.

“These caregivers are providing invaluable assistance with meals, transportation, personal hygiene, money management, and any other support needed. Even families that are fortunate enough to have formal long term supports and services in place for their loved ones – overwhelmingly funded through Medicaid – often maintain lifelong caregiving responsibilities. The demands of caregiving can be enormous, particularly for aging caregivers, which is why this law is so meaningful to The Arc’s community.

“We thank the law’s champions, Senator Collins, Senator Baldwin, Representative Harper, and Representative Castor, for ensuring the development of a national strategy to support our family caregivers. Each vote for this bill was a vote to support caregivers so that they can continue in their critical roles in supporting their loved ones. The bipartisan support of this bill is a heartening reminder that Members of Congress can successfully work across the aisle to support the needs of their constituents with disabilities. Disability rights are human rights and the overwhelming support of this new law should be celebrated by individuals with disabilities and their families nationwide,” said Peter Berns, CEO of The Arc

This legislation directs the Department of Health and Human Services to develop, maintain, and periodically update a National Family Caregiving Strategy, a recommendation of the national Commission on Long-Term Care. The Department is also charged with convening a Family Caregiving Advisory Council for the joint development of the strategy. Elements of the strategy are to include recommended actions that Federal State, and local governments and other entities may take to promote person and family-centered care, family involvement in assessment and service planning, information sharing and care coordination with service providers, respite options, financial security and workplace issues, and efficient service delivery.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc Responds to New Report Exposing Abuse and Neglect of Individuals With Disabilities in Group Homes

/in , /by The Arc

Washington, DC – At the request of Congress, the U.S. Department of Health and Human Services Office of Inspector General investigated states’ monitoring and reporting of injuries and other critical incidents of people with disabilities living in group homes. Following the investigation, a report was issued that cited numerous incidents of abuse of people with intellectual and developmental disabilities in group homes. The report found that up to 99% of these critical incidents were not reported to the appropriate law enforcement or state agencies as required. Below is The Arc’s response to the report:

“We are grateful to the Department of Health and Human Services, Office of Inspector General for its report that draws attention to critical incident reporting in group homes and provides states the tools to address the health and safety of individuals with intellectual and developmental disabilities (IDD) in their communities. Abuse, neglect, and injuries to people with disabilities must be taken seriously, reported to the appropriate law enforcement or state agencies, and prosecuted as appropriate for crimes committed. System failures must be addressed to ensure improvements.

“The OIG report is certainly cause for alarm and signals the need for rededication and reinvestment to ensure that everyone has the freedom to live safe from harm in their communities. It is important to highlight and appropriately address such jarring results, however, we are concerned that some see this as a call for returning to the time when people with IDD were placed in institutions and hidden away from the community. This report only focuses on group homes, not on the whole service system including institutions, the narrowness of the report must be taken into consideration and the report must not be used to eliminate options for community living.

“Throughout The Arc’s history we have fought for community inclusion for individuals with disabilities. Everyone deserves the right to choose where and with whom they live and it has been proven that people with disabilities thrive when living, working, and enjoying life in the community with their peers. We remain steadfast in our commitment to ensure that the services people with disabilities rely on for inclusion remain intact because community supports are critical. When people live in their communities they are visible and their neighbors and friends look out for them and know when something is wrong. We must make no mistake, it is life in the community that really is safest,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc on Government Shutdown: Programs People With Disabilities Rely on in Limbo

/in /by The Arc

Washington, DC – The Arc released the following statement in response to Congress reaching a stalemate on funding the federal government, and consequently, shutting down the federal government’s non-essential operations:

“The Arc is dismayed that Congress has failed to complete action on the Fiscal Year 2018 appropriations bills, resulting in a shutdown of the federal government. This action will have a detrimental impact on people with disabilities who rely on federal programs and services. Furthermore, programs with strong bipartisan support, such as the Children’s Health Insurance Program, need to be extended now or children will begin losing vital health insurance coverage.

“In addition, the issues with the Deferred Action for Childhood Arrivals program must be addressed as promised to provide pathways to legal status or citizenship; this stalemate will affect people with disabilities along with others who have made their homes in the US since childhood.

“The Arc urges Congress to fulfill its legislative responsibilities and continue to fund the federal government including the critical programs that people with IDD rely on to live and work in the community. This shutdown leaves us in limbo,” said Peter Berns, CEO, The Arc.

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The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and

protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Work Requirements for Medicaid Don’t Work for People With Disabilities

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the Trump Administration’s issuance of guidance about how states can include in their Section 1115 waiver proposals requirements some recipients of Medicaid work to receive coverage.

“The Arc opposes this reversal of long standing CMS policy. The Arc is also deeply concerned that critical policies we have long supported, such as Medicaid buy in programs, habilitative services, and supported employment services, are now being used to justify policies that would allow states to create barriers to Medicaid eligibility.

“Cutting off Medicaid won’t help anyone to work. Medicaid provides vital health care access that is a key ingredient for potential to be a part of the workforce. Many people with serious health conditions require access to health care services to treat those health conditions and to maintain their health and function. Furthermore, Medicaid specifically covers services, such as attendant care, that are critical to enable people with significant disabilities to have basic needs met, to get to and from work, and to do their jobs. Requiring individuals to work to qualify for these programs would create a situation in which people cannot access the services they need to work without working – setting up an impossible standard.

“The notion that this guidance excludes all people with disabilities is misleading. The protections the guidance claims to provide to people with disabilities are inadequate and will likely not protect the rights of people with disabilities.

“This is a bad policy, and we encourage the Administration to rescind it,” said Peter Berns, CEO, The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Civil Rights, Housing, and Community Development Organizations Call on HUD to Maintain Critical Fair Housing Tool and Not Roll Back Promise of Fair Housing Act

/in /by The Arc

Washington, DC – 76 national civil rights, faith-based, affordable housing and other organizations have voiced their strong opposition to HUD’s sudden and short-sighted decision to effectively suspend the Affirmatively Furthering Fair Housing (AFFH) regulation.

Nearly 50 years ago, Congress adopted the Fair Housing Act, landmark legislation necessary to end discrimination in housing and eliminate the barriers created by segregation. The AFFH regulation —designed with considerable public input and piloted extensively — was adopted in 2015 and was a critical and long overdue step in carrying out Congress’ intent. It provided jurisdictions with a roadmap and tools for compliance and included measures for accountability. Without warning, HUD has decided effectively to suspend the regulation, leaving local jurisdictions confused, giving local residents less voice in important decisions about their communities, and reinstating an approach to fair housing that the Government Accountability Office found to be ineffective and poorly administered.

“HUD’s effective suspension of the rule does nothing to help local governments fulfill their fair housing responsibilities to create equitable, healthy communities and provide access to housing without discrimination,” says Angela Glover Blackwell, CEO for PolicyLink. “It is the wrong move, particularly at a time when housing needs are so severe and housing and community development resources are so scarce. And by taking this step, HUD is abrogating its duty to carry out the mission Congress assigned it 50 years ago.”

“Americans strongly believe that a zip code should not determine a child’s future, and that everyone – regardless of their race or national origin, the language they speak, or whether they have children or have a disability – should have access to the opportunities they need to succeed,” said Shanna L. Smith, president and CEO for the National Fair Housing Alliance. “But we are falling short of achieving that goal. Actions taken over many years by HUD, other government agencies and the private sector have left us more segregated than we were 100 years ago. That has led to concentrated poverty and weaker communities and undermines our prosperity. We need HUD to enforce this important rule, not suspend it.”

“The administration’s abrupt decision to effectively suspend this critical regulation is misguided,” says Diane Yentel, president and CEO of the National Low Income Housing Coalition. “The federal government, states and local communities have been required by law since 1968 to work to undo the segregated communities that federal housing policy created in the first place. Suspending the tools that help communities meet that obligation, without any input from key stakeholders, is a step in the wrong direction.”

“The obligation of local governments to ‘affirmatively further fair housing’ is essential to fulfill the promises of the Fair Housing Act, particularly this year, the 50th Anniversary of this key civil rights law,” said Sherrilyn Ifill, President and Director-Counsel of the NAACP Legal Defense and Educational Fund, Inc. “HUD’s proposed suspension would roll back one of the law’s most critical tools to correct structural inequality and racial segregation and represents yet another attack by this Administration on communities of color across the country.”

“HUD’s decision to suspend a critical rule that has helped promote fair housing across the country is firm demonstration of Secretary Ben Carson’s hostility to fair enforcement and implementation of the Fair Housing Act,” said Kristen Clarke, president and executive director of the Lawyers’ Committee for Civil Rights Under Law. “We will not stand by idly as HUD works to roll back the important gains that have been made to promote fair housing opportunities across the country.”

HUD’s announcement today is a serious loss for fair housing and puts the promise of making every neighborhood a community of opportunity further out of reach. We call on HUD to reverse its decision, withdraw this notice, and move ahead with implementation and enforcement of this important fair housing rule. And we call on Congress to provide policy and budgetary oversight of HUD to ensure it is delivering on the promise of fair and equitable housing.

For media inquiries, contact:

Jessica Brady, Lawyers’ Committee for Civil Rights Under Law, (202) 662-8600 x 8317, press@lawyerscommittee.org

Phoebe Plagens, NAACP Legal Defense and Educational Fund, Inc., 212.965.2235, pplagens@naacpldf.org

Jesse Meisenhelter, National Community Reinvestment Coalition, jmeisenhelter@ncrc.org, 202-464-2737

Debby Goldberg, National Fair Housing Alliance, Dgoldberg@nationafairhousing.org, 202-898-1661 or Jessica Aiwuyor, National Fair Housing Alliance, Jaiwuyor@nationalfairhousing.org, 202-898-1661

Renee Willis, National Housing Law Project, Media@nlihc.org, 202-662-1530

Lisa Marlow, National Low Income Housing Coalition, Lmarlow@nlihc.org, 202-662-1530

Milly Hawk Daniel, PolicyLink, Milly@policylink.org, 917-658-6468

This statement is issued on behalf of:

Action Center on Race and the Economy Institute

American Civil Liberties Union

Association of Programs for Rural Independent Living

Autism Society of America

Autistic Self Advocacy Network

California Reinvestment Coalition

CarsonWatch

Center for Popular Democracy

Center for Responsible Lending

Center for Social Innovation

Center for the Study of Social Policy

Center on Budget and Policy Priorities

Coalition on Human Needs

Consortium for Citizens With Disabilities Housing Task Force

Consumer Action

Consumer Federation of America

Disability Rights Education and Defense Fund (DREDF)

Enterprise Community Parnters

Equal Justice Society

First Focus

FORGE, Inc.

GLMA: Health Professionals Advancing LGBT Equality

Grounded Solutions Network

Housing Assistance Council

Impact Fund

Japanese American Citizens League

Lambda Legal

LatinoJustice PRLDEF

Lawyers’ Committee for Civil Rights Under Law

Local Initiatives Support Corporation (LISC)

Local Progress

LOCUS: Responsible Real Estate Developers and Investors

Low Income Investment Fund

NAACP Legal Defense and Educational Fund, Inc.

National Alliance of Community Economic Development Associations

National Alliance on Mental Illness

National Asian Pacific American Women’s Forum (NAPAWF)

National Association for Latino Community Asset Builders

National Association of Councils on Developmental Disabilities

National Association of Human Rights Workers

National Center for Lesbian Rights

National Center for Transgender Equality

National Coalition for Asian Pacific American Community Development (CAPACD)

National Community Reinvestment Coalition

National Consumer Law Center (on behalf of its low-income clients)

National Council of Churches

National Disabilty Rights Network

National Education Association

National Equality Action Team (NEAT)

National Fair Housing Alliance

National Health Care for the Homeless Council

National Housing Law Project

National Housing Trust

National Juvenile Justice Network

National Law Center on Homelessness & Poverty

National LGBTQ Task Force

National Low Income Housing Coalition

National Network to End Domestic Violence

National Urban League

Paralyzed Veterans of America

PFLAG National

PolicyLink

Poor Peoples Economic Human Rights Campaign

Poverty & Race Research Action Council

Pride at Work

Prosperity Now

Public Advocates Inc.

Public Citizen

Smart Growth America

Technical Assistance Collaborative

The Arc of the United States

The Leadership Conference on Civil and Human Rights

Transgender Law Center

Treatment Communities of America

UnidosUS (formerly National Council of La Raza)

United Way Worldwide