“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

House Rules for 114th Congress Set Up Attack on Social Security and SSDI

This week, the House of Representatives adopted its rules of procedure for the 114th Congress (H. Res. 5). Stunningly, buried in this usually dry, non-controversial measure was an attack on Social Security that will put at risk Congress’s ability to prevent a 20% cut in Social Security Disability Insurance (SSDI) benefits in 2016.

The provision, inserted by Representatives Sam Johnson (R-TX) and Tom Reed (R-NY) and approved by a vote of 234 to 168, sets up procedural hurdles to House consideration of a needed, routine replenishment of Social Security’s disability fund. Shockingly, these major changes were never considered in hearings or open to input from constituents. While these rules only affect the House – not the Senate – they set a dangerous tone for how the 114th Congress may deal with Social Security and SSDI.

Here are three facts about this week’s House action that people with intellectual and developmental disabilities, their families and friends need to know:

  1. Congress needs to act by 2016 to prevent 20% across-the-board cuts in SSDI benefits.

Congress from time to time needs to adjust Social Security’s finances to account for population and economic shifts. The need to replenish the DI fund in 2016 to account for current trends, such as an older workforce now in its disability-prone years, has been expected for several decades. Without Congressional action, in 2016 the DI fund’s reserves will be depleted, leaving only incoming payroll contributions to pay for benefits. As a result, unless Congress acts, SSDI beneficiaries will face benefit cuts of 20% at the end of 2016.

  1. “Reallocation” is the common-sense, traditional solution.

Over the last 5 decades, Congress has repeatedly, on a bipartisan basis, used a simple, common-sense solution to address shortfalls in either of Social Security’s two funds (the Old-Age and Survivors Insurance or OASI fund, and the Disability Insurance or DI fund). A temporary shift to direct more Social Security revenues to the DI fund – called “reallocation” — will extend the solvency of the DI fund for almost two decades. Congress has made similar shifts 11 times in the past, about equally increasing the percentage going into one fund or the other. Reallocation does not require any new taxes. Additionally, the solvency of the overall Social Security system stays the same, with the combined funds remaining fully solvent through 2033.

  1. The House action creates roadblocks to strengthening Social Security, include SSDI.

The House rules of procedure govern how the House operates. The provision adopted in the House rules for the 114th Congress bars the House from reallocating to the DI fund. Procedurally, the House can in the future vote to waive this requirement – meaning that a reallocation could move forward, but only if the rule is waived. But the insertion of this provision into the House rules will create serious roadblocks to reallocation – and to Congress’s ability to keep Social Security’s promise to the more than 165 million hardworking Americans who contribute to Social Security and the nearly 11 million Americans who currently receive SSDI.

Want to learn more? Here are a few articles on the House action, from:

The Arc Calls on Governor McAuliffe to Grant a Conditional Pardon for Neli Latson Immediately

Stafford, VA – Today was another day in court for Neli Latson, a young man with autism who has spent a significant amount of time in solitary confinement. His case has become the symbol for dysfunction in our national justice system for people with intellectual and developmental disabilities (I/DD).  As Latson entered a guilty plea today to charges of assault, The Arc is calling on Virginia Governor Terry McAuliffe, who now has the legal authority to take action, to promptly grant a conditional pardon so that Latson can be transferred from the criminal justice system to the developmental disability system, where he will receive the services he needs.

“Mr. Latson is caught in a recurring cycle of prosecution and punishment due to factors related to his disabilities. He is not a criminal. He is a person with autism and intellectual disability whose behaviors can be aggressive, often in an attempt to communicate. Prison is not where Mr. Latson belongs,” wrote Peter Berns, CEO of The Arc, to Governor McAuliffe in early December requesting a conditional pardon.

Latson, who is 22, has been incarcerated since August 2013 as a result of behavior connected to his disability.  He has been held in solitary confinement for most of that time and is presently at a Virginia state prison.  His tragic situation is the result of events surrounding his initial detention which occurred while waiting for the public library to open, and from subsequent mental health crises resulting from his confinement.  A conditional pardon would allow Latson to be moved immediately to a facility in Florida that will provide the support necessary to help him move on from these events.

Advocates from The Arc’s National Center on Criminal Justice and Disability (NCCJD) and The Arc of Virginia have been involved in this case for months, advocating alongside Latson’s legal team.  NCCJD is operated by The Arc and is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with I/DD under one roof.  NCCJD is a national clearinghouse for research, information, evaluation, training and technical assistance for criminal justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system.  Currently, NCCJD is developing training for law enforcement, victim service providers and legal professionals that will support police departments, prosecutor’s offices, and other professionals in the criminal justice system to effectively and fairly administer justice for people with disabilities.

Justice Can Seem Insurmountable – New Pathways to Justice™ Introduction Video Aims to Help People with I/DD Navigate Daunting System

Too many times people with disabilities come into contact with the criminal justice system and the outcome is anything but just.”

The opening words of a new video created by The Arc’s National Center on Criminal Justice and Disability (NCCJD), the Pathways to Justice Introduction Video, powerfully highlight the broad lack of justice for people with disabilities within America’s criminal justice system. This four and a half minute video introduces the Pathways to Justice Model, and integral part of the Pathways to Justice training program being piloted by five chapters of The Arc. The Pathways to Justice Training Curriculum helps build the capacity of the criminal justice system to effectively identify, serve, and protect people with intellectual and developmental disabilities (I/DD), many of whom have “mild” disabilities that often go unnoticed among criminal justice professionals without appropriate training. The video points out why communities should seek additional training for criminal justice professionals.

Navigating the criminal justice system, as a suspect, offender, witness, or victim, is daunting for anyone. For people with I/DD and their families, there can be insurmountable obstacles to obtaining justice. The new Pathways to Justice Introduction Video highlights specific cracks in the criminal justice system through the telling of real life stories by people with disabilities and by their family members.

Take James’ story. James Meadours is a powerful self-advocate with intellectual disabilities who experienced multiple victimizations throughout his life—without anyone every knowing. As an adult, James was raped in his own apartment. He found the courage to reach out for help, leading to the successful prosecution of his attacker and the revelation that there had been multiple victimizations throughout James’ life. While this story ended positively with the attacker held accountable for the crime and James empowering others with his self-advocacy, society overall must do a better job creating safer lives in the community for people with disabilities. Research supports the fact that multiple victimizations are quite common among people with disabilities—this is unacceptable. James did not have to suffer in silence alone for so many years, we as a society can do better.

Using the Pathways to Justice Model, NCCJD aims to build collaborative relationships within the criminal justice and disability professions, creating solutions to identify, prevent, and stop injustices faced by people with disabilities. The Pathways to Justice Introduction Video debuted at The Arc’s National Convention in New Orleans with positive reviews, and was played at The Arc of North Carolina’s State Convention the following week. Chapters have already begun requesting copies to take to local law enforcement and criminal justice professionals as a way to effectively demonstrate the need for quality training on disability issues.

NCCJD wants you to help bridge gaps in your community’s criminal justice system. If we’re truly going to stop injustice in our nation’s criminal justice system against people with disabilities, we must take action. Get involved by:

  • Sharing the video: Use the conversation guide and the Pathways to Justice Model to begin a collaborative effort in your community. Let others in your state or community know about NCCJD as a reliable and trusted resource funded by the U.S. Department of Justice, and use the video to educate the criminal justice community about the need for effective training on disability issues.
  • Using NCCJD as a resource: NCCJD provides technical assistance and information & referral regarding a broad range of criminal justice issues. If you have a question involving the criminal justice system and someone with a disability use our online form.
  • Putting your state’s resources on the map: If there is a great resource in your area that we should know about, tell us! Visit the state map site to learn more: http://www.thearc.org/NCCJD/resources/by-state

While obtaining justice seems insurmountable at times, the National Center on Criminal Justice and Disability is committed to working with parents, professionals, self-advocates, and other advocates to create pathways to justice for all people with disabilities.

The Arc Marks Senate Passage of ABLE Act

Washington, DC – Today, as the U.S. Senate passed the Achieving a Better Life Act (ABLE Act), The Arc, the nation’s largest organization for people with intellectual and developmental disabilities (I/DD), released the following statement:

“We are pleased that the Achieving a Better Life Experience Act has been approved by both the U.S. House of Representatives and now the U.S. Senate.  With the clock winding down on this session of Congress, now this important legislation can move to President Obama’s desk.  We appreciate the untiring work of the chief sponsors of the bill and the support of a large and broad representation in both chambers of Congress.

“While the legislation was narrowed due to the constraints from the cost analysis, the approved bill will provide a vehicle for some families and people with intellectual and developmental disabilities to save for the future, depending on their own circumstances.  Our efforts will not be finished if President Obama signs this bill – The Arc will continue to work with the leadership and chief sponsors in Congress to expand this program in the future to ensure that everyone in need can get the maximum benefit from this legislation.  We remain disappointed that certain pay-fors remain in the bill,” said Peter V. Berns, CEO of The Arc.

The ABLE Act aims to change the tax code to allow for tax advantaged savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation.  Similar to existing “Section 529” education savings accounts, ABLE accounts would let families save for disability-related expenses on behalf of qualified beneficiaries with disabilities that will supplement, but not replace, benefits provided through the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources.  If properly managed, funds in the ABLE accounts would not jeopardize eligibility for critical federal benefits.  With full understanding of its features, individuals and families could use the ABLE accounts as another tool in planning for the lifetime needs of an individual with long term disabilities.  The version of the bill that passed the U.S. House of Representatives includes age limitations and a cap on contributions, added in July by the Committee on Ways and Means to reduce the costs of the bill.  If the President signs the ABLE Act into law, The Arc will issue a fact sheet including the details on the bill as it has been revised through the legislative process.  Further details would come through the regulatory process.

Issues That Affect Oral Health for Individuals with IDD

Toothpaste and toothbrush

Image via Kenneth Lu, used under a Creative Commons license

Individuals with intellectual and developmental disabilities (IDD) often suffer from many health-related conditions.  According to several studies and through The Arc’s HealthMeet project we have learned that poor oral health has been a significant problem for individuals with IDD.  One-third of individuals with IDD have untreated cavities and eighty-percent have untreated gum disease.  Tooth or gum pain can cause individuals to stop eating, affect speech/communication, and affect overall behavior and mood.

There is a multitude of reasons as to why oral health is an issue.  Accessibility to/from appointments, around the dentist office, and with equipment can all be large obstacles.  Financial reasons are also another large factor as some dentists won’t accept Medicaid or dental visits aren’t covered under their current insurance plan.  The lack of training and education for dentists regarding how to communicate and work with individuals with IDD can also impact the quality of services they are entitled to receive.

Due to some of these constrictions, individuals with IDD are less likely to visit the dentist for routine care.  Fear of the dentist can make getting routine cleanings and check ups a traumatizing experience.  These preventative visits, which can help to find cavities and signs of gum disease early on, are then skipped letting small issues grow into larger problems.   Organizations such as Practice without Pressure and the Blende Dental Group are striving to help improve oral health in individuals with IDD in their local areas by providing practice sessions to reduce fear and anxiety, and offering home visits.

Individuals with IDD tend to have poor eating habits when compared to the general population, which can mean eating more sugary foods, sodas, fast food – all things that have higher levels of bacteria that cling to teeth, causing plaque to build up and eat away at the enamel on your teeth causing cavities. Problems such as sensory issues, the taste/feel of the toothpaste or toothbrush, and inability to grasp the toothbrush can all make daily brushing a challenge.  Other times it’s as simple as just not remembering to brush twice a day letting plaque sit and eat away at teeth overnight while sleeping.

Saliva is a natural agent that helps neutralize the acidity/plaque levels in our mouth.  However, some medications (examples can be high blood pressure meds, antihistamines, antidepressants, etc.) can have a side effect of lowering the levels of saliva in the mouth (often called dry mouth).  These lower levels mean that less plaque is washed away and it has a longer time to linger on teeth causing decay.  Certain liquid medications can also be high in sugars as well.

While some of these obstacles are more difficult to change and will take time, there are many things that influence your oral health status that can be more easily altered in your daily routine.  Below are some tips that can help make daily oral care and prevention easier for individuals with IDD:

  • Poking a hole in a tennis ball and inserting the handle of a toothbrush or molding putty around the handle will make it much easier to grip and use.
  • Simple diet changes, like cutting out sodas and sweets, in addition to also assisting with weight loss and energy levels, will also help lower plaque levels in your mouth that can cause cavities.
  • Reduce snacking between meals – every time we eat our mouth turn into an acidic environment. In between eating is when our mouth has a chance to neutralize and return to normal levels. More snacking means the mouth stays at a higher acidic level for longer periods.
  • Set alarms on phones or leave notes in the bathroom as reminders to brush teeth in the morning and before going to bed.  Apps for your phone can be downloaded to set reminders.
  • If possible, try to take medications at meal times or at least before you brush your teeth at night so that plaque does not sit overnight on your teeth.

Being aware of some of these factors that can influence your oral health will help individuals be more conscious in the future and realize the importance of trying to get to the dentist yearly for routine care. Check out Healthmeet’s webpage for more informationresources and webinars on oral health care for individuals with IDD.

Federal Hiring of People with Disabilities Continues to Disappoint

Washington, DC – The federal government’s Office of Personnel Management (OPM) recently released Fiscal Year 2013 data on the hiring of people with disabilities in the government’s workforce. Once again, the report demonstrates that hiring of people with targeted disabilities, including intellectual disability (ID), continues to lag, and the federal government is missing an opportunity to be a model employer of people with disabilities.

“While the last few years have seen some modest increases in the numbers of people with disabilities employed by the federal government, The Arc remains deeply concerned that many people with the most significant disabilities, including jobseekers with intellectual and developmental disabilities, are being left behind. The federal government should implement the strategies the Department of Labor has laid out to meet their goal, and that should involve working with organizations like The Arc, with our nearly 700 chapters across the country, to proactively fill job openings with people with disabilities qualified for a variety of positions open in our government,” said Peter V. Berns, Chief Executive Officer of The Arc.

The federal government, through the Department of Labor, has initiated a new effort to increase the number of people with disabilities employed by entities that contract with the government, asking contractors to aspire to a goal of 7 percent of their workforce with disabilities. In explaining why there is a need to step up hiring of people with disabilities, the Department of Labor has stated: “A substantial disparity in the employment rate of individuals with disabilities continues to persist despite years of technological advancements that have made it possible for people with disabilities to apply for and successfully perform a broad array of jobs.” Meanwhile, in Fiscal Year 2013, the federal government only hired 1,389 people with targeted disabilities, representing 1.32 percent of new hires overall. The category of targeted disabilities includes people with intellectual disability (ID).

One factor in the federal hiring picture is the congressionally mandated budget cuts known as sequestration. These cuts forced federal agencies to put in place furloughs, hiring freezes, and reduce overtime. These budget cuts have trickled down to impact hiring of all new employees, including people with disabilities. Several federal agencies, however, have used their Schedule A hiring authority to make hiring people with disabilities a priority. The Schedule A process is a non-competitive hiring method that provides people with disabilities a path to federal employment.

“The numbers demonstrate that successful employment for people with disabilities is doable with the Schedule A process. Agencies that haven’t used this tool in their toolbox should look to their peers for guidance on how to improve their outreach, in addition to utilizing the competitive process to reach people with disabilities that match the skill sets needed for job opportunities,” said Berns.

The agencies that have demonstrated willingness to hire via with Schedule A include the Equal Employment Opportunity Commission (EEOC), the Department of Health and Human Services, the Department of Labor, the Office of Personnel Management, and the Treasury Department. However, 14 agencies hired no people using this hiring authority in 2013, including the Federal Deposit Insurance Corporation, Federal Trade Commission, and Department of Housing and Urban Development, which each made over 100 new hires but none through Schedule A.

One federal agency that The Arc has recently partnered with to boost the number of people with intellectual disability employed is the Federal Communications Commission (FCC). They have hired five individuals at GS3 and GS4 levels with the opportunity to be promoted to a GS5.

In July, The Arc submitted comments to the EEOC calling on the federal government to become a model employer of people with disabilities, including individuals with intellectual and developmental disabilities (I/DD).

“While we are pleased that the EEOC is moving forward with strengthening federal regulations, the shockingly low rate of federal employment of people with intellectual disability persists. Agencies can act now to step up their efforts,” said Berns.

The U.S. Bureau of Labor Statistics regularly reports that the percentage of working-age people with disabilities in the labor force is about one-third that of persons with no disability. On average, workers with disabilities face significant gaps in pay and compensation, compared to workers with no disability. Additionally, about one in three employment discrimination charges filed with the EEOC allege discrimination on the basis of disability (often, in combination with charges of other types of discrimination).

The Arc’s own research suggests that the employment picture for people with I/DD may be even bleaker. In 2010, The Arc conducted a national online survey, called the FINDS Survey, to obtain perceptions of people with I/DD and their families on a range of life-span issues. Over 5,000 people participated. Only 15 percent of FINDS survey respondents reported that their family member with an intellectual and/or developmental disability was employed.