DPS 2015 – Get Involved and Get the Facts!

DPS logoThis year’s Disability Policy Seminar is coinciding with some remarkable anniversaries. In 2015 we are set to celebrate the 25th anniversary of the passage of the Americans with Disabilities Act and the 50th anniversary of Medicaid and Medicare. The passage of this transformative legislature would not have been possible without the hard work of congressional leaders and disability advocates, like you! We can celebrate these monumental achievements, but we can’t stop there.

We need everyone who can to attend DPS so that every congressional district is represented. We have to keep the momentum going and strengthen our relationships with members of congress so that we can work together to advance our public policy agenda. This year’s Disability Policy Seminar is taking place April 13th- 15th, in Washington, D.C., at a new location – Renaissance Washington, D.C. Downtown Hotel. Come and be a part of the solution by registering today! Early bird registration and discounted pricing is set to end on March 13th. In order to get the most out of hill meetings, you must come to DPS. On the first day of DPS, you’ll be treated to an informative opening session from Rud Turnbull. During his session, Families Making a Difference: How Advocacy Advanced Civil Rights, Rud will explain his family’s journey in gaining meaningful changes in federal disability policy. This session will explore advancing civil rights though the concepts of empathy, compassion, dignity, and the ethical community. It is the perfect opening session to get you prepared for the next three days.

This year’s program is designed to prepare you and give you an accurate sense of what is happening in Congress. We want to show Congress that the disability advocacy network is strong and vast. Visit www.disabilitypolicyseminar.org to get full program information and to register.

Get involved and get the facts!

Hosted by: The Arc, United Cerebral Palsy (UCP), Association of University Centers on Disabilities (AUCD), American Association on Intellectual and Developmental Disabilities (AAIDD), National Association of Councils on Developmental Disabilities (NACDD), and Self-Advocates Becoming Empowered (SABE)

Promotional Support Provided by: Sibling Leadership Network and the American Association of People with Disabilities (AAPD)

Advances in Affordable Housing – The Arc Applauds $150 Million in New Funding for States

Washington, DC – The Arc released the following statement in response to the U.S. Department of Housing and Urban Development’s (HUD) announcement of awards totaling $150 million to 24 states and the District of Columbia to develop an estimated 4,584 units of inclusive, affordable supportive housing in the community for people with significant disabilities and extremely low incomes. HUD awarded the funds through the recently-modernized Section 811 Supportive Housing for Persons with Disabilities Project Rental Assistance (PRA) program. The Section 811 PRA program is designed to assist state housing agencies to expand integrated, supportive housing opportunities for people with the most significant and long term disabilities, and was the centerpiece of the Frank Melville Supportive Housing Investment Act of 2010.

“Like all Americans, people with intellectual and developmental disabilities deserve the opportunity to live independently in the community with their peers. Unfortunately, across our nation low-income people with disabilities face a severe shortage of accessible and affordable housing. The money being awarded by HUD will continue the progress and promise of the Melville Act, allowing thousands of individuals to live in the community, where they belong. For many, this announcement is the difference between life in an institution and inclusion in their communities,” said Peter V. Berns, CEO of The Arc.

Section 811 is the only HUD program dedicated to producing affordable, accessible housing for non-elderly, very low-income people with significant disabilities. The Frank Melville Supportive Housing Investment Act of 2010 modernized Section 811 to make the program more efficient and effective. Today’s awards are the second round of funding under the new Section 811 PRA program, which will create integrated housing linked with community-based services for low-income adults with significant disabilities.

Along with the District of Columbia, states receiving awards are: Alaska, Arizona, California, Colorado, Connecticut, Georgia, Illinois, Kentucky, Maryland, Maine, Massachusetts, Michigan, Minnesota, New Hampshire, New Jersey, New Mexico, Nevada, Ohio, Oregon, Pennsylvania, Rhode Island, South Dakota, Texas, and Wisconsin.

Love Your Heart

Heart graphic

Corazon image via Ilhh, used under a Creative Commons license

The leading cause of death for both men and women in the US is heart disease, with 1 in 4 deaths being attributed to it. February is recognized by many organizations as American Heart Month. While there are things that can affect your heart that are out of your control (such as genetics, race, sex), luckily there are many things that can be easily altered in an individual’s lifestyle that can help improve your heart health.

Individuals with intellectual and developmental disabilities (IDD) are at an increased risk of developing secondary health issues and engaging in risky behaviors that can lead to an increased risk of heart disease. However, many of these secondary issues can be modified, and in exchange lead to a healthier heart. We found what we believe are six of the top factors that affect individuals with IDD (and those without IDD) that can be altered/maintained in their lifestyle to help keep their heart healthy.

  1. Eat healthy and be physically active

Healthy eating leads to increased energy, weight loss, and lower cholesterol levels. If possible, try to stay away from frozen/processed meals, which can be high in trans-fat, and eat fresh foods. Some other healthy eating tips are:

  • Make half your plate fruits and vegetables.
  • Don’t completely cut yourself off from treats! Once-a-week type special treats or sweets help to reduce cravings and binge eating, but should not be eaten every day.
  • On Sundays, plan your meals for the entire week, so you know what you’ll be eating each day.
  • Cookbooks such as Cooking By Color, can help individuals with IDD learn about how to prepare simple, healthy meals at home.

CDC Vital Signs put out a report in May 2014 stating that nearly half of all individuals with disabilities get no physical activity. Recommended strategies to be more physically active are:

  • Get 30 minutes of physical activity five days a week. This can include joining a walking club, dancing, online workout videos, or attending a yoga/fitness class at your local Chapter of The Arc or fitness center.
  • If 30 minutes is too long to exercise all at once, split it up and do three 10 minute segments throughout the day. Individuals will reap the same health benefits as doing it all at once.
  1. Maintain a healthy weight

Thirty six percent of individuals with disabilities are considered obese as compared to 23% of individuals without disabilities. Regular physical exercise and healthy eating will help individuals to maintain a healthy weight and reduce the risk of developing type II diabetes, which is another risk factor that contributes to heart disease.

  1. Quit smoking

According to the CDC the rate of individuals with disabilities that smoke is notably higher than of those who do not have a disability. The chemicals and plaque from tobacco build up on the inside of the arteries, causing the passageway to narrow. This puts a lot of extra stress on the heart muscle to work harder than usual to make sure blood is circulating through the body.

Some resources to help individuals with IDD quit smoking include…

  1. Maintain a healthy blood pressure level

Individuals with IDD are 13% more likely to have high blood pressure/hypertension than those without disabilities. One cause of this could again stem back to lack of physical activity and poor eating habits. Normal blood pressure is 120/80. Other ways to help reduce blood pressure to safe levels are:

  • Reduce sodium – replace salt with spice to flavor foods
  • Don’t smoke
  • Limit stress levels
  • Reduce alcohol consumption or drink in moderation
  • In extreme cases medication may be required
  1. Don’t drink alcohol or drink in moderation

Moderation for men is 1-2 drinks per day and 1-per day for women. Excessive alcohol use over time can cause high blood pressure, irregular heartbeats, contribute to cardiomyopathy and stroke, or lead to heart failure.

  1. Manage stress

Stress levels for some individuals with IDD can be elevated daily due to frustration caused by communication barriers with peers/physicians/staff, or lack of ability to fully grasp certain concepts in school/work/social environments. In stressful situations, individuals might also choose to respond in non-healthy ways, such as overeating, smoking, or drinking alcohol as ways to cope. Enforcing good daily habits to deal with stress, such as exercising, meditating, or talking with friends/family, will help individuals with IDD manage stress in a healthy manner.

Making a few of these changes could have a huge impact on your heart and the way your body works. Learn more about how these 5 categories and how to improve your health by utilizing the resources from The Arc’s HealthMeet project.

The Arc Applauds Federal Agencies for Standing Up for Rights of Massachusetts Mother with Disability

Washington, DC – Recently, the U.S. Department of Justice and Department of Health and Human Services found that the Massachusetts Department of Children and Families (DCF) violated the rights of a mother with developmental disabilities. The mother was denied the opportunity to benefit from supports and services following the removal of her two-day-old infant, and over the next two years as she was seeking to reunite with her daughter.  Unfortunately, despite research that affirms the ability of parents with intellectual and/or developmental disabilities (I/DD) to raise a child successfully with appropriate and effective supports, access to these supports continues to be limited, fragmented and uncertain.  The Arc is a strong proponent of the right of parents with I/DD to raise children with supports, as needed, from family, agencies and the community.

“Plain and simple, this is a case of discrimination against a person with a disability and a clear violation of the Americans with Disabilities Act. This mother has rights that the state ignored and the outcome is appalling. The situation easily could have been resolved when she was pregnant, not two days after she gave birth. Had the situation been dealt with earlier, a plan could have been crafted and mother and daughter could be together receiving the supports they needed from family and the community. We are grateful to the Departments of Justice and Health and Human Services for standing up for the rights of this mother and for parents with I/DD across the country,” said Peter Berns CEO of The Arc.

The Arc of Massachusetts is supporting state legislation to prohibit discrimination against adults with disabilities in family and juvenile court proceedings.  Parents with disabilities are more likely to lose custody of their children after divorce.  According to the National Council on Disability, removal rates of children from parents with psychiatric or intellectual disability is as high as 70—80%. Parents with sensory or physical disabilities also experience extremely high removal rates and loss of their parental rights.

“We hope that caseworkers and leadership at DCF learn from this decision,” said Leo V. Sarkissian, Executive Director of The Arc of Massachusetts.  “Some DCF offices do recognize that persons with disabilities can be effective parents and have shown that in partnering with chapters and other disability support agencies.”

In Massachusetts two local chapters (EMArc and the United Arc) collaborate with DCF in order to provide high quality, curriculum founded, home-based intensive services for parents with I/DD  and have provided these services and supports for over 15 years.

For further information see the recent report of the National Council on Disability: “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children,” which can be found at: http://www.ncd.gov/publications/2012/Sep272012/.

The Arc Receives Support from Mitsubishi Electric America Foundation for Employment Program

Washington, DC – The Arc is pleased to announce that it has received $105,000 over three years from the Mitsubishi Electric America Foundation to support its Specialisterne Replication project.  The Specialisterne program creates inclusive employment opportunities for youth with Autism Spectrum Disorder (ASD), including Asperger’s Syndrome, in the information technology (IT) field.
The Arc has a partnership with Specialisterne USA,  a 501(c)(3) charitable organization established by The Specialist People Foundation, a Danish nonprofit organization that works to create meaningful employment for people with autism and similar challenges by building relationships with technology companies that need employees whose skill sets match the characteristics of many people on the autism spectrum.  The program engages top companies with IT needs interested in hiring youth with ASD and pairs them with chapters of The Arc that provide short-term intensive training and on-the-job support for youth with ASD.  At the end of training, companies may hire program participants as developers, programmers, analysts, and administrators.  Employers also receive training on supporting employees with ASD.  Chapters of The Arc in Philadelphia and New York, working in collaboration with Specialisterne USA, began replicating the Specialisterne program in 2014.  The 2015-2016 grant will allow The Arc to expand this crucial program to the Washington, DC area.
The program emphasizes that many youth with ASD are qualified to work in highly skilled positions, and with employer commitment and support they can be successful in community-based jobs of their choosing.
“There are many young people with ASD that possess the skills that are in high demand in the tech industry.  This program plays matchmaker, and through our chapter network, we can not only connect a population we serve with employment in the community, we are raising awareness in a major industry about what people with disabilities can do.  It’s an exciting initiative and we are thrilled to have the Mitsubishi Electric America Foundation’s support,” said Peter Berns, CEO of The Arc.
Mitsubishi Electric America Foundation has released  $1,539,600 in new and continuing grants, as part of its national M>PWR Initiative designed to empower youth and young people with disabilities to lead productive lives through increased employment.

Execution of Warren Hill “Shakes the Foundation of our Legal System for People with Intellectual Disabilities”

Washington, DC – This evening, the state of Georgia executed Warren Hill, a man who experts unanimously determined to have intellectual disability, which should have ruled out the death penalty per a 2002 Supreme Court ruling, Atkins v. Virginia, and a 2014 Supreme Court ruling, Hall v. Florida. There was a stay motion and a petition for a writ of certiorari filed to the U.S. Supreme Court which was denied this evening. Justice Stephen Breyer and Justice Sonia Sotomayor voted to stay the execution.

“Georgia’s ability to ignore experts and cross the line drawn by a more than decade-old Supreme Court ruling shakes the foundation of our legal system for people with intellectual disabilities. Just last year, the Supreme Court reaffirmed its commitment to ensuring justice for individuals with intellectual disability, with their ruling in Hall v. Florida, and it is extremely disappointing that following this decision justice did not prevail in Georgia.

“The facts in this case are clear – experts unanimously agreed that Mr. Hill had intellectual disability, yet the appeals at the state and federal levels were ignored.  The state’s actions in this case are unconscionable,” said Peter Berns, CEO of The Arc.

Warren Lee Hill, was found by a state court judge to have an IQ of approximately 70 and to meet the criteria for intellectual disability overall by a preponderance of the evidence. Georgia’s “beyond a reasonable doubt” legal standard for proving intellectual disability claims prevents Mr. Hill from being protected by Georgia and federal law prohibiting the execution of people with intellectual disability.

“This is a sad day for our community, and a shameful one for the courts that allowed this unconstitutional execution to take place. Our thoughts and prayers are with Mr. Hill’s family and his legal team.  The Arc will continue fighting for the rights of people with intellectual and developmental disabilities, and in the aftermath of this case we will only increase our legal advocacy efforts to ensure that the Supreme Court’s decisions are upheld and justice is appropriately served,” said Berns.

The Arc has been involved in this case for years. Nationally The Arc has participated in an amicus brief before the U.S. Supreme Court and written multiple letters urging clemency on behalf of Mr. Hill.

In its 2002 Atkins decision, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with intellectual disability (formerly referred to as “mental retardation”) and banned the execution of persons with intellectual disability as cruel and unusual punishment under the Eighth Amendment. In its more recent 2014 Hall decision, the U.S. Supreme Court again reinforced its earlier decision that people with intellectual disabilities not be executed, requiring that consideration of evidence beyond IQ tests be taken into account when determining intellectual disability.

The Arc Responds to Denial of Clemency for Warren Hill

Washington, DC – This morning, the Georgia Board of Pardons and Paroles voted to deny clemency in the case of Warren Hill, a man who has an intellectual disability (ID). Mr. Hill’s diagnosis of intellectual disability allows for protections found within the U.S. Supreme Court’s decisions in Atkins v. Virginia and Hall v. Florida. There is a stay motion and a petition for a writ of certiorari with the U.S. Supreme Court. They can still intervene and stay the execution, sparing Mr. Hill’s life.

“A gross miscarriage of justice has been committed in Georgia today. It is extremely disappointing that the Georgia Board of Pardons and Paroles failed to listen to pleas from The Arc, other organizations and experts to commute Mr. Hill’s sentence to life in prison without possibility of parole.  The facts in this case are clear – and the state’s action clearly goes against the U.S. Supreme Court’s previous decisions in Atkins v. Virginia and Hall v. Florida. We hope that the Supreme Court will intervene and stay the execution, they are the last and only chance for justice in this case,” said Peter Berns, CEO of The Arc.

Warren Lee Hill, was found by a state court judge to have an IQ of approximately 70 and to meet the criteria for intellectual disability overall by a preponderance of the evidence. Georgia’s “beyond a reasonable doubt” legal standard for proving intellectual disability claims prevents Mr. Hill from being protected by Georgia and federal law prohibiting the execution of people with intellectual disability.

The Arc has been involved in this case for years. Nationally The Arc has participated in an amicus brief before the U.S. Supreme Court and written multiple letters urging clemency on behalf of Mr. Hill.

In its 2002 Atkins decision, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with intellectual disability (formerly referred to as “mental retardation”) and banned the execution of persons with intellectual disability as cruel and unusual punishment under the Eighth Amendment. In its more recent 2014 Hall decision, the U.S. Supreme Court again reinforced its earlier decision that people with intellectual disabilities not be executed, requiring that consideration of evidence beyond IQ tests be taken into account when determining intellectual disability.

“Unreal” – My Trip To Washington for the President’s State of the Union Address

Senator Bob Casey and Sara Wolff

Senator Bob Casey and Sara Wolff

An interview with Sara Wolff, board member of National Down Syndrome Society, Board Member of The Arc of Pennsylvania, and her local chapter, The Arc Northeastern Pennsylvania as their Secretary.

Sara Wolff, 31, is a leading advocate for the Achieving a Better Life Experience (ABLE) Act for 8 years and continuing speaking and advocating for people with intellectual and developmental disabilities (I/DD), Down syndrome and other disabilities. Sara spoke to The Arc’s staff by phone on her way back home to Pennsylvania after attending the President’s State of the Union address as a guest of her U.S. Senator, Bob Casey. Members of Congress are given only one ticket for a guest at the annual speech before Congress. Sara and Senator Casey worked together on the ABLE Act, which President Obama signed into law in December of 2014.

What did you do before attending the speech?

I had dinner with Senator Casey and his wife, we had a great time. We also did some television interviews – it was awesome. We did four interviews together and we talked about the ABLE Act and many other issues.

What did you think about the speech?

I was very interested in many of President Obama’s points – I liked what he said about education and the middle class.

What did you think about being in the chamber?

Unreal. I felt like I was right there, with the President. Where I was seated he was right in the center. What an experience that I will never forget.

How was your seat?

It was crowded and I sat with a lot of people. I met a lot of people and I had a good time. I did have a good view of the President speaking.

What did you do after the speech?

I just hung out with my sister and Senator Casey’s staff. Went back to his office for a little while. It was a really cool night. I’m looking forward to getting home and doing more with the National Down Syndrome Society, The Arc of Northeastern Pennsylvania, and continuing to working at O’Malley & Langan Law Office in Scranton.

Hypertension More Prevalent in Individuals with IDD

Woman with nurse34% of adults with disabilities have high blood pressure compared to 26% of individuals without disabilities. High blood pressure, or hypertension, is often called the “silent killer.” Many people have high blood pressure and go about their business every day not even knowing it. This is one of many reasons why regular check-ups are vital to maintaining good health. A recent study published by the CDC stated that individuals with disabilities are 13% more likely to have high blood pressure levels than individuals without disabilities. Individuals with mobility issues have an even higher risk and are 23% more likely.

Blood pressure, which is the pressure of blood against the walls of blood vessels, can be hazardous if it remains at a continually high level. Normal blood pressure is 120/80 or less. Any higher than 120/80 and it is considered at risk for high blood pressure (also called pre-hypertension). A reading of 140/90 or higher is categorized as hypertension and you should consult your doctor. High blood pressure basically means that the heart is working overtime circulate blood and keep the body running efficiently. Working at this escalated level causes wear and damage to the blood vessels and heart, which leads to an increased risk of heart disease and stroke.

Factors that can contribute to high blood pressure are obesity, lack of physical activity, and diabetes – all issues that are very prevalent in individuals with disabilities. Foods with high percentages of sodium, fat, and cholesterol are also contributors and unfortunately can be found in may pre-made or frozen foods; which may be distributed to individuals at group homes, shared living residents, etc. because they are cost efficient and quick/easy to prepare. Preparing fresh meals at home is the best way to know what ingredients and how much salt is going into meals.

While some factors, like genetics and family history, you can’t change there fortunately are many easy things that you can modify in your daily life to try to lower and maintain your blood pressure level. Some of these things include:

  1. Eat a healthier diet including many fruits and vegetables.
  2. Reduce sodium intake. (Look for low/no sodium on food labels, rinse canned food to remove excess salt)
  3. Maintain a healthy weight.
  4. Get regular physical activity.
  5. Don’t smoke (or quit if you currently do smoke).
  6. Limit alcohol intake.
  7. Reduce stress.

Individuals that can’t bring their blood pressure levels down by making changes to their diet/lifestyle may need medication from a doctor to help lower levels. Many individuals with disabilities are on other medications as well, so make sure to ask the doctor about side effects and if previous medications will be an issue.

Having blood pressure checked every 1-2 years will help to monitor levels. If high blood pressure is detected, it is a good idea to check it more regularly. A blood pressure machine can easily be purchased at most drug stores or pharmacies at a relatively low cost.

For more information about eating healthier, increasing physical activity, and more check out The Arc’s HealthMeet page with plenty of resources and archived webinars to get started.

Statement from Brian Kammer, Attorney for Warren Hill

“Today Georgia set an execution date for a man who has had intellectual disability since childhood, and whose execution would be unconstitutional. Twice the lower court found Warren Hill to have intellectual disability by the preponderance of the evidence, a widely-used and appropriate standard. All of the states’ experts have agreed, and in fact no expert who has ever examined Mr. Hill disputes that he has intellectual disability. Many prominent leaders in the field of intellectual disability agree that Mr. Hill should not face execution because he is a person with lifelong intellectual disability. The only reason that he is now at risk of execution is that Georgia’s standard – requiring capital defendants to prove they have intellectual disability ‘beyond a reasonable doubt’ – is not science-based and inherently denies people like Mr. Hill from receiving the protection which the U.S. Supreme Court has ordered. Last year, the U.S. Supreme Court wrote in Hall v. Florida, ‘Persons facing that most severe sanction must have a fair opportunity to show that the Constitution prohibits their execution.’  Georgia’s standard does not allow that ‘fair opportunity.’ It is unfathomable that Georgia is planning the execution of a man with intellectual disability, who is constitutionally protected from execution.”

-Brian Kammer, attorney for Warren Hill

-January 16, 2015

The execution order can be accessed here: http://bit.ly/1AoNSaR