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.

Sexual Abuse of People with I/DD a Global Scandal

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 I/DD who are in contact with the criminal justice system.

rate of sexual abuse graphicSexual abuse of people with intellectual and developmental disabilities (I/DD) is a huge problem.

Children and teens with I/DD 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 I/DD 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 I/DD and, children, teens and adults with I/DD.

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 I/DD, 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.

http://www.cdc.gov/traumaticbraininjury/pdf/VictimizationTBI_Fact%20Sheet4Pros-a.pdf

http://en.wikipedia.org/wiki/Sexual_abuse_of_people_with_developmental_disabilities#cite_note-5

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

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

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 your 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.

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.