Osteoporosis Prevention

HealthMeetOsteoporosis, a condition where an individual’s bones become increasingly brittle and fragile, is one of the most commonly diagnosed bone diseases in the U.S. However, screening and diagnosis for individuals with disabilities are commonly overlooked. While screening for the general population usually starts later in life around age 65, individuals with disabilities should start being screened much earlier since the risk often comes at an earlier age. Osteoporosis is a secondary condition that can be alleviated (and in some cases prevented) if proper treatment and screening measures are in place.

Osteoporosis usually affects women (especially postmenopausal) more than men.   Women with specific disabilities that impair mobility are even more at risk to developing osteoporosis due to bone loss from immobility. Other lifestyle factors that can contribute to osteoporosis are:

  1. Low levels of calcium and vitamin D
  2. Smoking
  3. High levels of alcohol use
  4. Inactivity
  5. Small bone structure
  6. Frequent use of steroid treatments

Through the HealthMeet project we have found that the rate of falls for individuals with disabilities was 3 times higher than the rate for the general population. Falling can be particularly dangerous for an individual with osteoporosis, which can easily cause fractures and breaks that can lead to increased mobility issues and extensive hospital fees. Making sure homes and organizations are set up to prevent falls will help to decrease the initial risk of falling.

Some steps to take to help prevent osteoporosis are:

  1. Exercise – especially weight bearing exercises to help build bone density
  2. Limit alcohol intake and avoid smoking
  3. Eat a diet rich in calcium and vitamin D – Ask your doctor if you should be taking calcium or vitamin D supplements

Screening for osteoporosis can be difficult due to the tests that are required for diagnosis. Individuals with disabilities may not be able to sit in the required position to obtain x-rays or may have a hard time lying still for the amount of time required for the tests. Primary care physicians need to be educated to screening alternatives such as ultrasound, and the importance of prioritizing prevention methods for individuals with disabilities.

Check out The Arc’s HealthMeet page for more information relating to health and wellness.

Relias Learning and The Arc Announce New Partnership to Benefit State and Local Chapters Nationwide

Washington, DCRelias Learning, the leader in online training and compliance solutions for the healthcare market, announced today that it is partnering with The Arc, the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities (I/DD) and their families.

Relias Learning will offer Chapters of The Arc specialized rates on its Intellectual and Developmental Disability Training Library, which contains over 200 courses designed to improve competency and performance in community-based support, positive behavior support, autism support, customized employment, health and safety, and more. Relias Learning’s Applied Behavior Analysis (ABA) and Autism Library provides courses approved by the Behavior Analyst Certification Board (BACB) for continuing education needs for Board Certified Behavior Analysts (BCBAs) and to meet training requirements for the RBT certification.

“We are honored to announce our partnership with The Arc,” said Jim Triandiflou, CEO of Relias Learning. “Relias Learning is dedicated to providing tools necessary to build competencies and confidence in the Direct Support Workforce supporting those with intellectual and developmental disabilities. Delivering quality care begins with a skilled and trained workforce. Partnering with The Arc will put training in the hands of more people nationwide and help us to continue developing and delivering the best programs available.”

“Relias Learning has been a longtime friend to The Arc and we are thrilled to be entering into this partnership. This agreement will enable more members of The Arc’s network to utilize all of the high quality materials that Relias Learning has to offer. Continuing education courses, like the ones available, are essential to making sure employees are on the cutting edge of their respective fields. Working together The Arc and Relias Learning will be able to better serve individuals with intellectual and developmental disabilities and improve outcomes for them and their families,” said Peter Berns, CEO of The Arc.

In addition to online training libraries, courses are offered through an individual course-by course purchase option via www.academy.reliaslearning.com.

Through the new partnership, The Arc member chapters are eligible for exclusive discounts on learning management library subscriptions and Relias Academy courses.

The Arc Applauds Introduction of SSI Restoration Act

Washington, DC – The Arc applauds today’s introduction of the Supplemental Security Income Restoration Act (SSI Restoration Act) by Representative Raul Grijalva (D-AZ), Senator Sherrod Brown (D-OH), Senator Bernie Sanders (D-VT), and Senator Elizabeth Warren (D-MA).

“The SSI Restoration Act will bring welcome relief to the millions of Americans with disabilities and seniors who look to SSI as a lifeline that protects against extreme poverty. Unfortunately, key standards that affect important areas such as how much a SSI beneficiary can save or earn have not changed in decades. The SSI Restoration Act will bring these standards up to date to better reflect the program’s original intent and strengthen SSI for extremely low income people with disabilities and seniors,” said Marty Ford, Senior Executive Officer, Public Policy, The Arc.

The SSI Restoration Act would update the SSI resource limits, to $10,000 for an individual or $15,000 for a couple – the amount they would be today if adjusted for inflation since 1989, the last time the resource limits were updated. The bill would also update the general income disregard (to $112 per month) and the earned income disregard (to $364 per month) to the amounts they would be today if adjusted for inflation since 1972, the last time they were updated. Finally, the bill would repeal the in-kind support and maintenance provision and repeal the SSI transfer penalty.

For more information, read the Supplemental Security Income Restoration Act of 2015 Policy Brief and SSI FAQs.

The Arc Launches TalentScout – Guide for Employers on How to Successfully Employ People with Autism

TalentScoutWashington, DC – One in 68 children today are being diagnosed with autism spectrum disorders (ASDs).  The unemployment rate of adults with intellectual and developmental disabilities (I/DD), including ASDs, is 85 percent.  This appalling statistic coupled with the increase in prevalence of kids being diagnosed demands action from all sectors of our economy to ensure that people with ASDs are finding appropriate employment at a fair wage, and retaining that job with the proper supports to be successful and have a career of their choosing, just like people without disabilities.
With nearly 65 years of experience working with and serving people with I/DD, including autism, The Arc is launching an exciting new resource called TalentScout for employers to unlock the talents of people with autism in the workplace.  TalentScout is a first of its kind resource toolkit that gives employers essential insight and tools that harnesses their employees with autism fullest potential and leads to higher levels of productivity in the workplace.

“People with autism have a lot to contribute in all aspects of our society.  In the workplace, their individual unique talents need to be maximized to benefit both the goals of their employer, and their personal desire to have and keep a job that adds meaning to their life.  Far too many people with autism are left on the sidelines of our workforce, and entities that have recognized the benefits of hiring someone with autism are reaping the rewards.  Whether it’s the loyalty that someone with a disability may bring to their employer, or their unique skill set that gets the job done, people with autism are ready for hire,” said Peter Berns, CEO of The Arc.

TalentScout is a valuable resource for government agencies that are working to implement President Obama’s initiative (EO 13548) to hire 100,000 people with disabilities into the federal government workforce, and for federal government contractors who need to bring their companies in compliance with the new 503 regulations on employment of people with disabilities.  These new regulations require federal contractors to conduct targeted outreach to the disability community, establish a 7% workforce utilization goal; implement data collection mechanisms to measure effectiveness of affirmative action, provide invitation to applicants and existing employees to voluntarily self-identify, and to perform an annual evaluation to measure outcomes.

The Arc is providing a unique resource for employers in that TalentScout’s content has been vetted by people with autism, and it includes their first-hand accounts and insights as job applicants and employees. It is backed by the years of nationwide experience of The Arc’s vast chapter network, and by Autism Now: National Autism Resource and Information Center.

“TalentScout is an extremely valuable guide. This sets the bar high for employers,” Jose Velasco, SAP, Head, Autism at Work Program.

“The personal stories and insights took this document to another level,” Kristie King, Comcast/NBC Universal, Manager, Diversity Recruitment.

TalentScout is one component of TheArc@Work, which is leading the way in developing innovative workforce solutions for the government and private sector by connecting employers with talented employees with I/DD and supporting the recruitment, on-boarding, and retention process.

Building Financial Literacy and Building Acceptance

In April, we mark both Autism Acceptance Month and National Financial Literacy Month. Since we celebrate them together, let’s focus on how increasing financial literacy promotes acceptance and inclusion of people with autism and other intellectual and developmental disabilities (I/DD).

Economic self-sufficiency is one of the goals of the Americans with Disabilities Act (ADA), along with equality of opportunity, full participation, and independent living. As we approach the 25th anniversary of the ADA in July, we still have a long way to go to achieve the goal of economic self-sufficiency. Nearly one in three people with disabilities age 18 to 64 lives in poverty, more than twice the rate of working age people with no disability (DeNavas-Walt & Proctor, 2014). Correcting that financial disparity will require a lot of hard work on many fronts.

One step that we can take in our communities is to make training available to increase financial literacy of people with disabilities and their family members. As a part of its Real Economic Impact Network, the National Disability Institute has created the Financial Education Toolkit that includes an array of tools and resources to promote financial literacy education. These tools teach core concepts in areas such as understanding what money is, budgeting and spending responsibly, and establishing and working towards financial goals.

As we improve financial literacy, we also need to work with people with I/DD and their family members to put those concepts to work in a way that improves their individual financial situations. The Center for Future Planning provides critical information that people with I/DD and their families can use to stabilize their financial situations now and to plan for the future.  The Center provides families with resources on what public benefits are available and how to organize private funds in Special Needs Trusts and ABLE Accounts without putting public benefits at risk. ABLE accounts are not yet available, but we expect they will be soon in many states.

To participate in all aspects of community life, people with I/DD need financial resources. Even as April comes to an end, it’s important to continue developing ways to help people with I/DD and their families develop financial skills and build financial resources. Moving towards economic self-sufficiency is moving towards acceptance.

Learn How HealthMeet® is Promoting Healthy Lives!

In 2012, The Arc launched the HealthMeet® project because we believe people with intellectual disabilities (ID) should have access to high quality, comprehensive, and affordable health care. HealthMeet® offers free community-based health assessments to people with ID at selected chapters in California, Massachusetts, New Jersey, North Carolina, and Pennsylvania. Over 1,500 people have been assessed through the HealthMeet initiative and 9 percent of those participants reported to have an autism spectrum disorder. At The Arc, we believe that Autism Acceptance is promoting healthy lifestyles.

Overall, HealthMeet® has been a positive experience for participants and chapters of The Arc involved in the project. The health assessments provide an opportunity for participants to be assessed in the areas of vital signs and body composition, respiratory health, vision, hearing, oral health, and foot and mobility issues. Participants also feel empowered to take charge of their health by engaging in dialogue with health assessors about the status of their health and recommendations for follow-up care. As Erika Hagensen of The Arc of North Carolina has noted “health is not a taboo topic, it’s an empowering topic.”

The chapters of The Arc involved in HealthMeet® have leveraged community resources and developed partnerships with local entities such as public health departments, nursing schools, and medical schools. HealthMeet® has also been a learning experience for many of the healthcare professionals that conduct the health assessments because they now feel more equipped to serve people with ID. Through HealthMeet®, healthcare providers have developed better communication skills that will ultimately help them serve the participant’s healthcare needs.

To learn more about how The Arc is increasing health opportunities for people with ID view this video:

If you are a healthcare provider, national organization of healthcare providers, caregiver, chapter of The Arc, or service provider (not affiliated with The Arc), we ask that you join our effort to increase your knowledge of the I/DD community and serve people with I/DD. Learn more by viewing this video:

HealthMeet aims to reduce health disparities experienced by people with intellectual or developmental disabilities (I/DD) so they can live a longer and healthier life. Through free health assessments and training, HealthMeet helps people with I/DD learn about their health needs. HealthMeet also offers training to improve public, health professional, and caregiver awareness of health issues faced by people with I/DD. HealthMeet is supported through at $1 million cooperative agreement with the Centers for Disease Control and Prevention. For more information on the HealthMeet project, contact Jennifer Sladen at sladen@thearc.org.

Supporting The Age Wave: Baby Boomers and Autism

Since 2010, baby boomers in the United States have been turning 65 at the rate of approximately 10,000 a day. Some of these new baby boomers are people with autism. At the same time, over 3.5 million adults with autism and other developmental disabilities are living with family members. In nearly 25 percent of these households, the family caregivers are over 60 years of age. During Autism Acceptance month, we should address the challenges that the age wave creates for people with autism and their family members.

To start, people with autism over the age of 65 should learn about benefits that may be available to them in the disability and aging service systems. Learn about what public benefits the person with autism may be eligible for and apply for the appropriate benefits. In addition, Area Agencies on Aging (AAA) can help you access services and support available to seniors. AAAs offer a variety of home and community-based services such as respite, meals on wheels, and transportation. Visit www.ncoa.org for more information about additional benefits available to seniors.

Supporting aging parents of people with autism is another critical issue that needs to be addressed. In addition to the health and financial issues that all seniors face, caregivers are often overwhelmed by concern about what the future will look like for their son or daughter once they can no longer provide support. Although planning for the future can be challenging and emotional, it is necessary and possible.

Discussing these major life transitions and putting a plan in place may actually alleviate some of the stress experienced by adults with autism, their caregivers, and other family members. The Arc’s Center for Future Planning offers information and resources to adults with I/DD, aging caregivers, and other family members.

During Autism Acceptance Month, here are some ways you can access more help:

 

The Arc’s Center for Future Planning aims to support and encourage adults with intellectual and developmental disabilities (I/DD) and their families to plan for the future. The Center provides reliable information and practical assistance to individuals with I/DD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning. Visit the Center’s website at futureplanning.thearc.org for more information.

The Arc Celebrates Release of Richard Lapointe on Bond, Urges Prosecutors to Drop Case

Washington, DC – The Arc is thrilled to see the release today of Richard Lapointe, who has been in prison since 1987 for a rape and murder he did not commit. After a lengthy, coercive interview with the police, Lapointe falsely confessed to the crime, which was committed against his then-wife’s grandmother. Since then, his legal team and advocates have been fighting for his case to be reconsidered, because of his intellectual disability.

Last week, the Connecticut state Supreme Court raised concerns about the circumstances of the interrogation and the truthfulness of the alleged confessions, and ordered that he be released or given a new trial. Then this week, prosecutors agreed not to pursue the means to keep him in prison while they decide whether to challenge the state Supreme Court decision.

“This nightmare has gone on far too long for Richard. Finally, the state Supreme Court has recognized how the police treated Richard, and for the first time in more than 27 years, he will step outside of prison a free man. The prosecutors should now take the next and final step to end this and dismiss the charges, once and for all,” said Peter Berns, CEO of The Arc, who attended the oral argument of the case when it was heard by the Connecticut Supreme Court.

The Arc runs the National Center on Criminal Justice and Disability (NCCJD), the first national effort of its kind to bring together both victim and suspect/offender issues involving people with intellectual and developmental disabilities (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.

“Far too many Richards are living in prisons, without the level of support Richard had from advocates and his attorneys – and it took more than 27 years for this injustice to be uncovered. How many more Richards are out there? False imprisonment of anyone, including people with I/DD, is an ugly mark on our nation’s conscience. The National Center on Criminal Justice and Disability is working every day to ensure justice for people with intellectual and developmental disabilities,” said Berns.

Those accused of crimes they did not commit often face the greatest injustice of all, some losing their lives when coerced into giving false confessions. Since 1983, over 60 people with intellectual disabilities have been executed based on false confessions. Robert Perske, respected author, advocate and long-time supporter of The Arc, compiled a list of people with intellectual disabilities who gave false confessions to begin documenting these otherwise hidden-away cases. Lapointe is on Perske’s list.

“It’s been a tough road – all the things Richard had to go through to get to this point are unfathomable. I’m feeling very good about all the troops that have stood by Richard all these years. Richard’s situation needs to teach everyone in the system,” said Perske.

“This is an extraordinary day. Richard never gave up hope and neither did his supporters. The truest form of justice is being served today!” Leslie Simoes, Executive Director, The Arc of Connecticut.

Step into Good Foot Health

Feet

Image via Care_SMC, used under a Creative Commons license

Through The Arc’s HealthMeet project, which provides free health assessments to individuals with IDD in 5 pilot states, we have unveiled some common health concerns affecting this population, one of these issues being poor foot health. Foot care is important because for most people, our feet are how we get around throughout the day. Discomfort in the feet can cause mobility issues and lead to an increased risk of falling.

Each foot contains 26 bones, 33 joints, and about 100 tendons, muscles, and ligaments. Keeping your feet strong and healthy will help to reduce pain and discomfort. Individuals with intellectual and developmental disabilities (I/DD) can be at a higher risk for having foot pain due to bone or muscle deformities, or lack of access to adequate medical care.

Other factors that can contribute to foot pain are obesity and diabetes – both of which individuals with I/DD have higher rates of than the general population. Our feet carry all of our body weight on them wherever we go, so individuals that are overweight are constantly putting more pressure and stress on their feet, which over time can cause muscles, tendons, and ligaments in the foot to stretch out and break down. Obesity can also lead to type 2 diabetes. Individuals that have diabetes are recommended to have an annual foot exam by a doctor or podiatrist due to the many complications that can come from having “diabetic foot”. Over time, diabetes can cause nerve and blood vessel damage resulting in less feeling or numbness and less blood circulation to your feet. A person may not be able to feel when they cut their foot or if something is rubbing against their foot causing open sores. These sores and cuts can then go unnoticed for days. With the lack of blood circulating to the foot due to damaged blood vessels, the healing process is slowed down, letting infections develop. Even if an individual is not able to use their legs or feet, they still need to be checked to ensure they are healthy and free of infections.

Some individuals with I/DD that are less verbal may not be able to express the pain that they are feeling in their feet or think the constant pain is normal. This distress could result in moodiness and lack of desire to be physical active. Communication between individuals with I/DD and their caretakers and physicians is essential to maintaining good foot health.

Below are some things you can do to make sure that proper foot care is occurring to prevent foot pain and infections:

  1. Maintain a healthy weight – excessive weight leads to more pressure that can cause foot/heel pain or arthritis
  2. Wear shoes with good supports – for extreme cases of flat feet, etc. orthotics that are made to fit an individual’s specific foot may be needed
  3. Wash feet every day with warm water and in between toes
  4. Inspect feet every day for sores, cuts, and blisters and make sure to clean out properly
  5. Trim toenails – make sure not to trim too short which could lead to ingrown toenails
  6. Don’t go barefoot in areas where there can be sharp objects or rocks that can cut the bottom of your feet
  7. Use sunscreen on your feet– the skin on the top/bottom of your feet can be especially sensitive to sun exposure and overlooked when applying sunscreen

For more information on how to take care of your feet better, check out the HealthMeet project’s Resource Page.

How Oprah’s Story and Show Helped One Sexual Abuse Survivor with Down syndrome Beat the Odds

It started with one jarring phone call

“Conny, it’s Tammy. I think Jenny has been molested.” The grave tone of my sister Tammy’s voice told me that there was no doubt it was true.

How could anyone have hurt our precious, precious sister? Our sister, Jenny, has Down syndrome and an accompanying intellectual disability. Jenny is a person who would not hurt a fly, whose kindness and sensitivity are legend in the family; a person who could not stay in a room with a crying baby because it so upset her that she started crying too. A person with empathetic response to the world around her and a limited understanding of the evils of human nature, and a person whose disability influences her trusting nature.

My sister, Tammy, was home from college and doing what she always did when home, enjoying hang time with her big sister Jen. This often meant watching some of Jen’s favorite TV shows. Jen has a set schedule of shows she loves to watch so much that you look forward to the treat of watching them with her. Jenny’s usual routine is to return home from her supported day work program (currently she works as a candy striper at a hospital) and watch TV. On this particular day, like legions of other Americans, it was the Oprah Winfrey Show.

Tammy and Jen were about to catch one of Oprah’s most talked about shows. It ran on April 26, 2002, and was called “The Secret World of Child Molestation.” Oprah, a victim of child molestation herself, had a record of discussing the issue—even back when it was still largely taboo to discuss such matters in public. Even by 2002, when the topic had become more commonly discussed, this show still caused a stir because it presented a “deep dive” portrait on how often molesters are known and trusted members of your own family or community. The episode aired roughly concurrent to the still unfolding horror of the Catholic Church’s child molestation scandal in which known child abusing priests were left in parishes or moved from parish to parish, leaving epic numbers of devastated children in their wake.

Tammy found the show unsettling but was shaken to the core when Jen almost casually commented after then show, “Well that happened to me. But I’m over it now.” . . .

For the resolution to the Mayer family’s powerful story, view the whole piece here.


If you or someone you know is experiencing abuse or victimization:

  • Report to your local authorities or call The National Sexual Assault Hotline at 1-800-656-HOPE. Often, people with communication limitations will need support when calling the hotline.
  • Once any emergency situations have been handled, contact The Arc’s National Center on Criminal Justice and Disability (NCCJD) for more information about this issue, assistance when pressing charges, and to learn how you as a crime victims can “beat the odds” in your journey from crime victim to survivor. Submit a request online.

To get involved and end abuse, sign The Arc’s pledge and help raise awareness with #RallyTogether.