The Arc’s Statement on The Bipartisan Budget Act of 2013

The Arc released the following statement in response to Congressional leaders reaching a budget agreement negotiated by Senate Budget Chairman Patty Murray and House Budget Chairman Paul Ryan.  The Bipartisan Budget Act of 2013 would set discretionary spending for the current fiscal year at $1.012 trillion (about halfway between the Senate budget level of $1.058 trillion and the House budget level of $967 billion).

This agreement will help preserve programs that individuals with intellectual and developmental disabilities (I/DD) rely on, restore order to the federal budget and appropriations process, and reduce the deficit by between $20 and $23 billion. Additionally the agreement provides $63 billion in sequester relief over two years, that will be split equally between defense and non-defense programs, which will prevent further cuts to important programs.

“While The Arc is pleased that the budget agreement did not make major changes to our lifeline programs including Social Security, Medicaid, and Medicare, we are concerned about what appears to be the expansion of the state Medicaid agencies’ ability to recoup costs from settlements from Medicaid beneficiaries.  This could affect payments owed to individuals and families who have been harmed, received compensation, and depend on the compensation to pay for expenses beyond what Medicaid covers.  Allowing a state Medicaid agency to recover ‘any payments’ by a third party with legal liability (rather than just those payments for health care items and services, as under current law) would leave beneficiaries without coverage for other basic necessities,” said Peter V. Berns, CEO of The Arc.

Diagnosing Dementia in People with I/DD Difficult

HealthMeetStudies have shown that individuals with intellectual disabilities are living longer these days with many living well into their 50’s and 60’s and beyond.  This is most likely due to new medical advances and educational programs that help empower individuals to live healthier lifestyles.  While this is remarkable news, it is also directly correlated to the increased rate of dementia in individuals with I/DD.  While most of the general population develops Alzheimer’s after the age of 65, many individuals with I/DD (especially Down syndrome) are more likely to develop Alzheimer’s earlier on in life, which is called Early-Onset Alzheimer’s.  Some may even develop it as early as their forties.

Individuals with Down syndrome are at a higher risk than other individuals with disabilities for developing dementia.  As we know, individuals with Down syndrome have an extra copy of the chromosome 21.  This specific chromosome contains a gene that produces a protein that can cause brain cell damage.  Since these individuals have an extra copy of this gene they are producing more of this harmful protein in their bodies.  Studies have shown that almost all individuals with Down syndrome will develop the same changes in the brain that are associated with dementia; however not everyone will develop the symptoms of the disease.

Diagnosing dementia in an individual with I/DD can also be a difficult situation because many individuals may have trouble answering the testing questions that could be used to diagnose it. There are also few other assessment tools developed for individuals with I/DD.  In addition, some behavioral issues that individuals with I/DD can have may also be confused with signs for dementia when the issue is rooted in another problem. Starting to rule out all other possible options for the change in the individual’s behavior is a good start to determine what the real concern is.

We recently talked to The Arc’s Board President, Nancy Webster, who has had some personal connections with dementia in her family, too.  Nancy’s concern is that families don’t know where to turn to get information on dementia, what signs to look for, and how to get the appropriate testing.  As caregivers and family members with an individual with a disability, it is important to be aware of the individual’s whole situation to better advocate for their needs.  Nancy believes “this advocacy is not solely on The Arc and its members, and on families, but also on general practitioners too – as they are the first line of people who tend to see our population”.  Nancy’s hope is that through The Arc’s HealthMeet project, The Arc will become a resource for this topic to help families and caregivers find the information and supports that they need to better treat this disease, and once diagnosed learn how to cope and minimize the effects of dementia as best possible.

For more resources and webinars relating to dementia, check out the resources and archived webinar page on The Arc’s HealthMeet site.  Don’t forget to sign up for our upcoming webinar focusing on Understanding Behavioral Changes in Adults with IDD and Dementia.

Disability Case at the U.S. Supreme Court – What You Need to Know

Supreme Court of the United StatesEarlier this year, the U.S. Supreme Court agreed to hear Hall v. Florida, a death penalty case concerning the definition of “mental retardation” (or intellectual disability (ID) as it is now called) that states may use in deciding whether an individual with that disability is protected by the Court’s decision in Atkins v. Virginia. In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with ID is unconstitutional.

Numerous expert evaluations have documented Hall’s disability.  One psychologist’s examination found organic brain dysfunction and severe cognitive impairment, possibly due to repeated head trauma; neuropsychological testing showing severe brain impairment.  Another psychiatrist found that Hall is chronically psychotic; that he suffered violent child abuse; has organic brain damage and is paranoid. The lower court records include findings of severe and violent abuse of Hall during his childhood.

The Hall case is the first case the Supreme Court has taken on the issue of the death penalty for defendants with ID since the Atkins decision, which indicates that there could be a further clarification of states’ responsibilities under that decision.  Specifically, the Hall case centers on whether the state may establish a hardline ceiling on IQ, refusing to consider whether anyone with an IQ above that level may actually have ID (despite the fact that such a ceiling violates the nature of the tests involved and the professional judgment of the diagnostician, among other things).  In Hall, the Court has been asked to address Florida’s decision to draw the line at an IQ of 70.

The Arc strongly believes that every individual with ID should be protected from the death penalty and applauds the Court’s decision to hear this case.  In the past, The Arc has participated in a number of cases on this issue before the Supreme Court including Atkins v. Virginia.  Participating in an amicus (friend-of-the-court) brief in the Atkins decision, The Arc’s  brief was cited by the Justices in support of its ruling that the Constitution protects all defendants with ID.  Since 2002, The Arc’s advocates have been actively involved in the implementation of the Atkins decision in the Federal and State courts across the country.

The Hall v. Florida case is not the only case pertaining to this issue in the news right now. Earlier this year, Warren Hill’s appeal to the U.S. Supreme Court to halt his execution because he has ID was denied.  Hill’s lawyers filed a petition directly to the Supreme Court, stating that they had evidence proving Hill has ID.  However, in Georgia (where Hill was convicted), ID must be proven by the defendant “beyond a reasonable doubt,” the strictest standard in the country.

Many people in the disability community share The Arc’s belief that states should not be allowed to create a stricter or more limited definition of ID than the professionally accepted clinical definition of ID. To do otherwise allows the states to execute some people with ID while protecting others. This approach violates the intent of the Atkins decision.

The Arc will be closely following Hall v. Florida as it moves through the U.S. Supreme Court in 2014.

A Chapter of The Arc Promoting Health and Nutrition in Schenectady County, New York

Know Grow Eat participants A few years ago, Schenectady County Public Health Services and Schenectady Arc formed a unique partnership to address the high rates of chronic disease and obesity among people with I/DD in Schenectady County through the Strategic Alliance for Health. Schenectady Arc a  provider of residential, vocational, clinical, and adult day services in New York State’s Capital Region, recognized that among its 1,480 participants, nearly 10 percent were diagnosed with cardiovascular disease, obesity, or diabetes and wanted to do something to address the needs of those they served.

While nationally-based research showed individuals with I/DD were more prone to incidence of chronic disease, Schenectady Arc had confidence that they could help their participants by improving their diet and educating them about healthy eating habits. Further research found that children who participated in a “seed to table” nutrition education program tended to increase their consumption of fruits and vegetables. Through this program, children participated in a variety of regularly scheduled activities such as vegetable taste-testing, hands-on gardening, and recipe preparation. Based on these studies, Schenectady Arc created Know, Grow and Eat Your Vegetables, a garden-based nutrition education program for people with I/DD. The agency’s horticulture coordinator oversaw the new program which was located at Schenectady Arc’s commercial-sized greenhouse in Rotterdam, NY. The coordinator assessed awareness of and preference for 15 vegetable types and, worked alongside 70 participants to plant and cultivate seedlings.

Know Grow Eat participantsWhile the vegetables were being grown, nutrition educators from Cornell Cooperative Extension of Schenectady County (CCESC) conducted a six-week program adapted to the specific needs of individuals with I/DD. This training provided participants and staff with strategies regarding healthy meal preparation practices and how to incorporate vegetables into daily meals and snacks.

This remarkable program continues to flourish and provide nutrition and education for individuals with I/DD in Schenectady County. Since the program began, participants have harvested approximately 1,000 vegetables. Vegetable packets, along with recipes, were distributed for consumption in group home or family home settings. Last year, this program was named by The National Association of County and City Health Officials (NACCHO) as a model practice and an implementation guide can be found on the U.S. Centers for Disease Control and Prevention website! Also, during The Arc’s national convention, Schenectady Arc and NACCHO presented together, giving chapters of The Arc the opportunity to learn from the success of this program.

Being Thankful for You!

Thanksgiving is right around the corner. 2013 seems to have flown by, and everyone at The Arc is reflecting about all the things for which we are thankful.

First and foremost, the board and staff of the National Office are most appreciative of YOU and your ongoing support of our cause nationally, as well as with local community and state chapters of The Arc.

We could not be more thankful that you and all of our generous supporters are dedicated to our mission, helping us continue to ensure that those with intellectual and developmental disabilities live a fully inclusive life.

What are we asking for? Only that this holiday season you will please accept a big THANK YOU for your commitment, support, and generosity to The Arc throughout the year. We could not have made the progress we have this year without you!

Whether you stay home or travel, have a safe and happy Thanksgiving from all of us here at The Arc.

 

Men, Get Proactive About Your Health

Women’s health issues are highly publicized. There are information, brochures and events relating to breast cancer awareness all over the country. However, you never hear as much information regarding men’s health issues. This is not to say that men’s issues are less important because they definitely are not.  Many studies have shown that men are less likely to go to doctor’s visits or follow up on concerns they are having in their bodies. More concerning is adding that to the fact that we have also learned that individuals with disabilities in general go to the doctor less than individuals without disabilities. Therefore, men with disabilities are at even more of a risk for not receiving the necessary preventative check-ups and screenings needed.

Statistics say that 1 in 6 men will be diagnosed with prostate cancer in their life. Prostate cancer is the 2nd leading cause of cancer death in men (behind lung cancer). However, it is also very curable. In fact, most men who are diagnosed with prostate cancer will not die from it if it is caught early on. The key is catching it early on. It takes about a minute to receive a prostate exam and doing this annually could be help detect abnormalities while they are still treatable.

Just like prostate cancer, testicular cancer is also very treatable if diagnosed early too. Information has been accumulating from recent studies that show an association between Down Syndrome and testicular germ cell tumors. As other malformations can occur in organs of individuals with Down Syndrome, the testicles can also develop abnormally, which can produce conditions that are conducive to creating germ cell tumor growth.

Educating self-advocates and their caregivers with information like this will help to increase awareness and raise rates of early detection for cancer in men. Help ensure the men that you care for receive the proper information and receive annual cancer screenings. A few minutes a year to get screened could make a huge difference. For more information relating to men’s health, check out the CDC’s Men’s Health page.

Are you a caregiver? Then we want to hear from you!

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 (I/DD) 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 I/DD 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 I/DD 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 I/DD 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 I/DD 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.

On His Own Terms

Ricardo ThorntonRicardo Thornton always had big hopes and dreams. But as is too often the case with people with intellectual and developmental disabilities (I/DD), 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 I/DD 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 I/DD could be employed, let alone live independently. Fewer still believed that they could have mature, intimate relationships.

Ricardo & Donna's weddingRicardo 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 I/DD 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 I/DD. 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 I/DD 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 I/DD 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.

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

CRPDIn 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.

Breast Cancer Doesn’t Discriminate!

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 mammaograms 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.