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Are You a Caregiver? We Want to Hear From You!

/in /by The Arc

Each November, we celebrate National Family Caregivers Month, and we all know a caregiver who we respect and admire. Caregivers truly deserve year-round recognition, because they do what they do out of love and a desire to help someone live the fullest life they can despite the challenges they might face. Being a caregiver for a person with intellectual and developmental disabilities (IDD) can be as difficult as it is fulfilling at times. Dedicating your time to help another person with everything from their personal care and financial planning, to advocating for them and ensuring their life is enjoyable is no small task. The shared relationship, emotions, experiences, and memories between you and the person you care for can cause physical, emotional, and psychological strain on both the caregiver and the person with IDD receiving care. According to The Arc’s FINDS survey, 88% of caregivers feel physical fatigue, and 81% feel emotional stress or experience upset or guilt as a result of their caregiving activities.

As part of The Arc’s HealthMeet health assessment and education initiative, we seek to find out more about how caregivers of all ages and types – parents, siblings, paid staff, and others – view the health status of the person with IDD they take care of as well as their own health. Because of the additional reported physical and emotional stress on both the caregiver and the person receiving care, we also look to find out more about what plans are in place to support the person with IDD you take care of if something were to happen to you.

To help us find out more about these issues, please complete this survey or send it to a caregiver you know. This survey not only helps The Arc find out more about health issues experienced by people with IDD and their caregivers but can also be used to help caregivers think about “red flag” health concerns that they may have about the person they provide care for.

The information provided in this survey is confidential and will never be used to identify someone specifically. Individuals filling out the survey will have the opportunity to provide contact information if they choose to do so. This information will only be used to send information about The Arc and its health promotion programs.

If you have any questions about this survey, please contact Jennifer Sladen at sladen@thearc.org.

This survey is a modified version of the HealthMatters Caregiver Assessment Survey created by the University of Illinois at Chicago, Department of Disability and Human Development. HealthMeet® is a project of The Arc funded by a $938,745 cooperative agreement with the Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities Grant #5U59DD000993-02.

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Sexual Abuse of People With IDD a Global Scandal

/in , /by The Arc

By Theresa Fears, MSW. Theresa has been working in the field of sexual abuse prevention of people with intellectual and developmental disabilities for 13 years. She created the Partnership 4 Safety program at The Arc of Spokane. The Arc has recently launched a National Center on Criminal Justice and Disability to address some of the issues highlighted by Theresa and provide resources for people with IDD who are in contact with the criminal justice system.

Sexual abuse of people with intellectual and developmental disabilities (IDD) is a huge problem.

Children and teens with IDD are three to four times more likely to be sexually abused than are those without disabilities. Some researchers estimate that the lifetime rate of abuse of adults with disabilities is as high as 90 percent.

Childhood sexual assault has lifelong consequences. Childhood sexual assault has been connected to depression, posttraumatic stress disorder and an increased risk of sexual abuse in adulthood.

Adult victims of sexual assault may experience the trauma of not being believed or of being blamed for the attack and risking displacement from their homes or residences. Sadly, many victims do not receive therapy to help deal with the trauma of an attack. In a recent study, only 33 percent of victims received therapy after their sexual assaults. There are many false beliefs about those who offend. The most common is that they are strangers, but according to a number of authors, between 97 percent and 99 percent of assaults were committed by someone the victim already knew. Approximately 44 percent of the perpetrators were connected because of the victim’s disability. Perpetrators may include special education teachers, bus drivers, caregivers and other support personnel.

Research on risk factors for sexual assault of people with IDD has been consistent over the last 20 years. The frequently reported risk factors are:

  • Lack of education about sexual development and anatomy
  • Lack of information on abuse awareness
  • Lack of healthy relationship education
  • Lack of social norm education
  • Lack of age-appropriate friends

If sexual assault is a problem, then what is the solution? Prevention! There are three levels of prevention according to the Centers for Disease Control (CDC), primary, secondary and tertiary. Primary prevention takes place before harm has occurred; its purpose is to stop sexual abuse from happening.

Secondary prevention happens immediately after abuse has occurred; its purpose is to prevent it from happening again. And lastly, tertiary prevention is a response to the harm of sexual abuse — generally therapy.

The CDC has recommendations for creating prevention programming based on years of evaluating what works and what doesn’t.

Providing prevention programming across the lifespan would require offering education to parents of people with IDD and, children, teens and adults with IDD.

The logical place to begin primary prevention therefore is with the caregivers of young children — the parents.

A solid parent education program should have three goals:

  • To increase parents’ understating of the rates of abuse and risk factors
  • To explain parental obligation to support children’s development as sexual beings and
  • To teach parents how to identify and challenge inappropriate or dangerous behaviors of any adult in a child’s life.

How can you begin a prevention program at your agency? First, look to the programs you already have for a natural fit. It would be easier to add sexual abuse prevention training to a parent education, information, support and advocacy program than it would to an employment program for example.

A good free parent education program is the “Where We Live” curriculum created by Pittsburg Action Against Rape (www.pcar.org/special-initiative). Although it is not written for children with IDD, it can be easily modified. I would be happy to share this information with Apostrophe readers who are interested in beginning parent education in their community.

This article first appeared in the Winter 2013 issue of Apostrophe Magazine (October-December).

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An Open Letter to Suzanne Wright, Co-Founder of Autism Speaks

/in /by Peter Berns

Yesterday I had the privilege of attending an event at the White House celebrating the 50th anniversary of President John F. Kennedy signing into law what later led to the Developmental Disability Assistance and Bill of Rights Act. In light of this historic anniversary, I feel compelled to comment on a recent blog post leading up to Autism Speaks’ first National Policy and Action Summit earlier this week.

Back in 1962, President Kennedy’s Panel on Mental Retardation* called for our country to “combat” mental retardation, “[exploring] the possibilities and pathways to prevent and cure mental retardation.” Here we are, 50 years of progress later, and your words connote the same sense that we are at war, suggesting that given the prevalence of autism we should call out the “Army, Navy, Air Force and Marines.”

Over the years, though, we have learned that war is no longer a useful metaphor to invoke and apply in the disability community. People with autism, or for that matter other developmental disabilities, are not victims of the predations of some evil actor, nor are their mothers, fathers, sisters and brothers. Instead, we appreciate, as stated in the Developmental Disabilities Act, that “disability is a natural part of the human experience.”

Unfortunately, your description of children with autism and their families is polarizing and divisive, creating rifts within a community that can ill afford it in these perilous times. Characterizing people with autism and their families as victims suffering from a dreaded affliction ignores the diversity of the community of people with autism, as well as their creativity, perseverance, adaptability, resilience, and overall beauty of their human spirit. It belittles the many who, rather than seeking to be cured, are striving for their human rights to be accepted and respected. It is far from reality for many people with autism whom I know and who are involved in our work. All are deserving of dignity and respect.

Certainly, it is true that many individuals on the spectrum, and their families, face serious challenges on a daily basis. The current system of social insurance and social services and supports fall well short of meeting the needs of too many who are in need of assistance. To confront this reality and achieve progress on behalf of and with people with intellectual and developmental disabilities, including autism, the only successful path forward is one which unites, rather than divides. We all must work together.

As you may be aware, The Arc is the nation’s oldest and largest nonprofit organization advocating on behalf of and serving people with all different types of intellectual and developmental disabilities. Throughout our network of nearly 700 chapters in 49 states, The Arc serves and advocates on behalf of and with many individuals with autism – and we know that more can and should be done to ensure that people with autism are included in the community and have access to the services and supports to achieve their goals in life. Solutions to the challenges people with autism and their families face are possible.

The Arc’s experience, over more than 60 years, makes clear that our power to achieve change is greatest when people with intellectual and developmental disabilities, their parents, brothers, sisters, professionals, colleagues and friends are all at the table. Our voice is even stronger when we make it a priority to listen to what people with developmental disabilities have to say for themselves about their own lives.

Now is the time to come together – people with and without disabilities, including autism – to determine where we want to be tomorrow, next year and 50 years from now. The rhetoric of 50 years ago has no place in today’s discourse.

Sincerely,

Peter V. Berns
Chief Executive Officer
The Arc

*The outdated term mental retardation is used in this context because it is the formal name of a panel in existence 50 years ago. Today, the accepted terminology is intellectual and/or developmental disability.

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On His Own Terms

/in /by The Arc

Ricardo Thornton always had big hopes and dreams. But as is too often the case with people with intellectual and developmental disabilities (IDD), they seemed almost impossible to achieve. Fourteen years of Ricardo’s childhood was spent in the confines of Forest Haven in Laurel, Maryland. Forest Haven (closed in 1991) was the District of Columbia’s public institution for children and adults with a variety of mental, intellectual, and developmental disabilities that had a dark history of abuse of residents and below standard conditions. His sister and brother were also residents and, sadly, his sister died there, never experiencing a full life outside of the institution.

Ricardo was determined that his life would have a different outcome, but leaving the institution was just the beginning of his struggle. Ricardo took his first step by landing a job at the Martin Luther King Library, where he has worked for more than 35 years. Donna, a friend and fellow former resident of Forest Haven, got a job nearby at Walter Reed Medical Center. Donna soon got her own apartment and Ricardo’s weekly visits to her blossomed into romance.

For most, this would not be extraordinary, but at that time people with IDD were rarely encouraged to live independently and certainly not to get married. Unlike The Arc, most developmental disabilities agencies, caregivers and even family members did not believe that people with IDD could be employed, let alone live independently. Fewer still believed that they could have mature, intimate relationships.

Ricardo and Donna forged the way, but the journey wasn’t easy. While other couples only need to fill out basic information for a marriage license, Ricardo and Donna were told that it was illegal for people with IDD to get married in D.C.! With support from The Arc of D.C. and other disability rights organizations, and through the couple’s own sheer determination, Ricardo and Donna eventually realized their dream of being together.

Life progressed, and like many newlyweds they wrestled with the question of parenthood, something their friends and medical personnel advised against. But, eventually they had a baby boy, who is now a successful 25-year-old with a wife and daughter of his own.

Now, Ricardo is one of The Arc’s most well-known self-advocates – living life on his own terms and inspiring others with IDD. He shares his life story with audiences across the country, pointing out that making his hopes and dreams a reality required determination and the right amount of help, guidance and resources. His inspirational story has even been made into a movie called Profoundly Normal.

“I’ve seen people with severe disabilities who have grown and accomplished great things given the right support,” he testified before the U.S. Senate’s Committee on Health, Education, Labor, and Pensions (HELP).

The Arc is proud to have been able to help Ricardo achieve his goals for more than 30 years. The Arc supports individuals with IDD in communities nationwide through a national network of chapters. In many cases, what people like Ricardo hope and dream for is what we often take for granted – from securing a job and getting married to having a child and living in the community of their choice on their own terms. We continue to advocate on behalf of the thousands of people with IDD who are still living in state run institutions. With the tireless efforts of The Arc of Alabama, Alabama became the first state in the southeast to no longer operate large public institutions, and in December 2014, Illinois will have closed 4 out of the 5 of its state run institutions.

Your support allows The Arc to continue its important work. You can help people like Ricardo and Donna live life on their own terms with your donation today.

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The Arc Urges the Senate to Act on the Convention on the Rights of Persons With Disabilities

/in /by The Arc

In advance of the U.S. Senate Foreign Relations Committee’s hearing today on the United Nations Convention on the Rights of Persons with Disabilities (CRPD), The Arc is urging the Senate to support this treaty because it is the right thing to do for American citizens with disabilities who travel abroad and for the millions of people around the world that currently don’t have the rights that we enjoy through our long history of disability rights advocacy.

“This treaty is modeled after The Americans with Disabilities Act, which affirms the rights of American citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities. The Senate’s failure to pass the Convention on the Rights of Persons with Disabilities last year marked a sad day for individuals with disabilities across the globe and an embarrassing moment for our nation.

“Today’s hearing is an opportunity for us to fix the wrongs of last year and join more than a hundred other nations, millions of disability advocates, family members, and self-advocates in supporting the human rights for individuals with disabilities internationally. We will be following this process closely, and hope to see the Senate move forward with the CRPD,” said Peter Berns, CEO of The Arc.

Over the last year, The Arc has been working with numerous disability, Veteran’s, and civil rights advocacy groups to garner support for ratifying the treaty, which will promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities. For months, The Arc’s Public Policy team and grassroots advocates across the country have been working to promote the CRPD and ensure ratification. Currently more than 650 local, state and national disability and allied groups support the treaty.

The United States signed the CRPD on July 30, 2009, joining the 141 other signing nations. As of October 2013, the Convention had 138 ratifications and 158 signatories. On May 17, 2012, following almost three years of thorough review, the Obama Administration submitted its treaty package to the U.S. Senate for its advice and consent for ratification. On December 4, 2012, the United States Senate considered the ratification of the CRPD but fell 5 votes short of the 66 needed – two-thirds of Senators who voted.

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Breast Cancer Doesn’t Discriminate

/in /by The Arc

Breast cancer is second leading cause of cancer deaths among women. However, if found early breast cancer is also one of the most treatable cancers. These statics relate to ALL women, whether you have a disability or not, which is why it is so disconcerting that studies have shown that women with disabilities are much less likely to receive regular mammograms. Receiving routine check-ups and screenings are essential to finding these types of cancers early on when they are treatable. It is recommended that women over the age of 40 receive a mammogram every year. If you are a woman below the age of 40, but have a history of breast cancer in your family it is also advised that you start getting screened earlier.

There are no proven reasons as to why women with disabilities have less frequent screenings, but many times we are so focused on “treating the disability” that annual check-ups and appointments to screen for common diseases and conditions can get pushed to the side as less of a priority. Also, sometimes medical facilities and the equipment used for screenings such as mammograms are not always as accessible as they need to be.

Educating women with IDD, families and physicians is essential to help raise awareness of the importance of early detection. To lower your risk of getting breast cancer it is important to control your weight and exercise, limit the amount of alcohol you drink and know your family medical history. If you provide services to people with disabilities, teaching those you care for to perform an at home self breast exam can improve the changes of discovering lumps orchanges, such as tenderness, skin texture and color or enlargement of pores, that can indicate a problem.

HealthMeetPrograms, such as The Arc’s HealthMeet project and the Women Be Healthy program, offer information and resources for women with disabilities and their caregivers to learn more about the facts behind the need to receive these screenings. Visit The Arc’s HealthMeet webinar page to view our past webinar detailing results from the Women Be Healthy study. Remember to advocate for the women in your life by supporting them to understand and receive these preventative screenings.

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A New Affordable Care Act Resource

/in /by The Arc

The Arc is excited to be part of the National Disability Navigator Resource Collaborative (NDNRC) a new resource for people helping the uninsured to gain coverage through the health insurance marketplaces. The collaborative is led by the American Association on Health and Disability (AAHD) and is supported by a one-year grant from the Robert Wood Johnson Foundation.

The Collaborative intends to develop training and technical assistance materials to respond to the need for cross disability training for people who are helping with the enrollment process. The Collaborative will address issues particularly important to people with disabilities such as the interplay between the private marketplaces, Medicaid and Medicaid alternative benefit plans, the need to carefully compare plans especially in the rehabilitation and habilitation benefits, the pharmacy benefits and mental health and substance abuse parity.

The funding for this project is scheduled to begin this week and the first meeting of the advisory organizations will take place in late October. The Arc recognizes the critical need for this work and looks forward to being a part of the effort.

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Myths and Facts About the Convention on the Rights of Persons With Disabilities

/in /by The Arc

For the last two years, The Arc has been working with numerous disability advocacy groups to garner support for the Convention on the Rights of Persons with Disabilities (CRPD), which will promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities across the globe. There are many misconceptions about the CRPD, and we would like to clarify some of the most common myths and facts.

Myths and Facts About the CRPD:

Myth #1: Sovereignty will be lost if the treaty is ratified
FACTS: Sovereignty means that the U.S. is protected as an independent governing body and no outside organization (like the UN) or another country can compel the U.S. to do anything. The same RUD (RUD = legal binding condition added to treaties) is attached to the Disability Treaty that is attached to all human rights treaties passed by the U.S. Senate in order to protect U.S. sovereignty ensuring that in no way can the treaty compel the U.S. to do anything and that any changes in law would have to go through our own traditional legislative procedures.

Myth #2: The treaty will require funding and support for abortion
FACTS: Abortion is not mentioned in the treaty but opponents of the treaty lead folks to think it is. There is nothing in this treaty that changes abortion rights in the U.S. It simply states that people with disabilities should have the same access to health care as people without disabilities. It is a statement of non-discrimination NOT a change in U.S. law or policy.

Myth #3: The treaty will take away homeschooling/parental rights
FACTS: The CRPD is a non-discrimination treaty that does NOT change our law but confirms our commitment to disability rights and allows us to impact disability rights globally. That means NO changes to U.S. laws covering parental rights laws or homeschooling.

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Agreement to Re-Open the Federal Government and Raise the Nation’s Debt Ceiling: What Does It Mean to The Arc?

/in /by The Arc

The Arc is relieved that Congress reached a last minute agreement to reopen the federal government and avoid defaulting on our debts. The government shutdown had already put in jeopardy services and supports that people with intellectual and developmental disabilities (IDD) rely on, and the narrowly averted default would have resulted in an economic crisis in our country and around the world that would have affected all citizens. However, despite this temporary victory, we recognize the very difficult challenges that lie ahead for the disability community in the next few months.

What is in the Agreement? The measure, which passed by comfortable margins in both chambers and was signed shortly afterwards by President Obama, has five key provisions:

  1. reopening of the federal government through January 15 at sequestration levels (the approximately 5% automatic, across-the-board spending cuts for discretionary program);
  2. an extension of the debt limit until February 7 and a provision that requires a proactive vote to disapprove extending the debt limit, as opposed to having regular votes to raise it;
  3. establishment of a House-Senate budget conference committee to come up with long-term spending plans by December 13;
  4. a requirement for income verification for recipients of subsidies under the Affordable Care Act’s newly-established health insurance exchanges; and
  5. back pay for furloughed federal workers.

How does this impact The Arc? The budget conference committee is a return to a more normal way of doing business in the Congress. However, it does mean that everything is on the table for consideration, including proposals harmful to people with IDD that have surfaced in previous budget proposals. Some of these have included cuts to entitlement programs that people with disabilities rely on for their health and economic security, such as block granting Medicaid and dramatically cutting spending for the program, turning Medicare into a voucher program and cutting payments to doctors, and reducing the costs of living adjustments for Social Security and other programs through the adoption of the “chained” consumer price index (CPI). Discretionary programs (which include disability-related programs such as housing, education, and employment) also have been targeted for further cuts. On the other hand, the budget conference committee leadership already met, with some leaders stressing that they must find common ground. Learn more about the budget conference at Politico.com.

What Can The Arc Do? The Arc and our network of advocates must be prepared to respond if the budget conference committee begins to seriously consider “entitlement reform,” which mostly consists of cuts and harmful changes to Medicaid, Social Security and its disability programs, and Medicare, as well as threats to funding for critical discretionary programs. The Arc will monitor this closely. Learn more about how to get involved by signing up for our Action E-List.

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The Arc in Nevada and People First of Nevada Announce New Joint Venture

/in /by The Arc

Reno, NV – The Arc in Nevada and People First of Nevada are proud to announce a new joint venture funded by the Nevada Governor’s Council on Developmental Disabilities (DD). This exciting project aims to provide people with developmental disabilities living in the state of Nevada with information and skills necessary to participate in advocacy and policy making decisions through expanding an effective statewide self-advocacy organization – People First of Nevada – that is led by people with developmental disabilities.

The Arc has years of experience creating movements of social change, and training people with DD in ways that supports their lives. In 2011, The Arc created the National Council of Self Advocates in response to the need to fully include people with DD to guide The Arc’s direction and to provide self-advocacy training, leadership development, and opportunities to be part of a national self-advocacy movement that is grounded in local and state grassroots efforts. This effort in Nevada is a natural extension of those efforts.

“People First is excited to join forces with The Arc in Nevada and to start new ventures together,” said Santa Perez, Self-Advocacy Coordinator for The Arc in Nevada.

People First of Nevada is a self-advocacy group run by and for individuals with developmental differences throughout Nevada. People First works to support the reality that people with developmental disabilities have the right to make their own decisions and to live self-determined lives.

This joint project will include efforts to recruit and engage new people with DD to the Nevada self-advocacy movement. Participants will be provided with leadership training and have opportunities to develop new self-advocacy skills and be among the upcoming generation of new leaders. This training will provide information on how to grow an organization in financial terms, and also in terms of solid leadership and governance strategies.

The Arc in Nevada is funded by the Nevada Governor’s Council on Developmental Disabilities to support expanding the capacity of People First of Nevada as a strong, sustainable organization able to expand the leadership and impact of self-advocates (people with developmental disabilities) in their communities across Nevada.