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The Market Allows Self Advocates to Achieve With The Arc Long Distance: An Insider’s Preview

/in /by The Arc

It was an exciting time at The Arc’s National Office last week when I let out a cheer and announced that we had the first six vendors for The Market at The Arc’s 2012 National Convention and International Forum in Washington, DC.  This meant that The Arc’s newest project in honor of self-advocate entrepreneurs will become a reality in this year’s Marketplace on October 26 and 27!  I feel that The Market will be the crowning achievement, which makes the 2012 National Convention EXTRA special.

There is plenty new and different that will already make this year’s Convention unique and one of a kind.  We are co-hosting this event with Inclusion International, and up to 150 international visitors from countries around the world will be in our nation’s capital attending the conference.  This will be an opportunity for attendees from the United States to mingle with professionals, family members and self-advocates from Europe, Asia, Africa, and New Zealand. We will have the chance to learn about the issues surrounding the inclusion of self-advocates in other nations, and explore our own issues and accomplishments surrounding inclusion through a fresh set of eyes.

We were determined to make Entrepreneur Alley bigger and better than EVER this year in honor of this year’s theme of inclusion. There was only one problem: we were getting feedback from self-advocates that travel to Washington, DC and lodging were often hurdles too expensive for our self-advocate microbusiness owners to climb. This is why I LOVE working at The Arc: instead of giving up on this dream, we took this issue as a challenge. And from this challenge, The Market was born!

I have been working the phones for weeks straight pitching our new opportunity to self-advocate run businesses across the country. Sign up to be a part of The Market, and The Arc’s team of dedicated staff and volunteers, spearheaded by yours truly, will sell your merchandise for you right in the heart of Entrepreneur Alley! The area will be set up as a bazaar with a biography and photo of each self-advocate owner, so that their stories can be told. Or, if you prefer, you can send us your marketing brochures, pens, flyers, key chains, or other materials to display and all of our national and international attendees will be able to learn more about you and your business. We waited in anticipation to see if the idea would break through and attract attention, it is always a nail biter to see if a new concept will gain traction, and we are now exited to announce our first 6 vendors at The Market!

  • Aid for Abby features the artwork of a young self-advocate on the autism spectrum named Abby. She loves to share her paintings with the world, and she and her mother Bonnie also sell special handmade dog treats.
  •  JennyLU Designs will be selling charm earrings and necklaces created by a special and talented artist named Jenny, who has Williams syndrome.
  • Just for You CardArt features the handmade greeting cards of best friends and self-advocates Donna and Jenna. Their cards sold wonderfully at The National Down Syndrome Congress in Washington, DC this month, and they cannot wait to share them with us!
  • Through the Same Door is led by self-advocate activist Micah Fialka-Feldman, who loves to tell the inspirational story of his life on the front lines in the fight for inclusion in higher education. He also sells DVDs which tell this story.
  • COMAAT stands for Changing One Mind at a Time, and is run by Jennifer Walsh, a self-advocate with a Master’s degree who speaks at conferences and gives seminars on inclusion.
  • Casey’s Cookies is a tiny non-profit, which sells homemade cookies, which are baked, packaged and sold by self-advocates in the state of Florida.

I want to thank these self-advocate business people for answering our call to join us at The Market this year and hope that this will be the first of many such events to come! If you are a self-advocate entrepreneur, who would like to sell your wares but is unable to afford travel, it is not too late to join The Market! Please call me at (202) 534-3720 or email me at katz@thearc.org for more details, and I would be happy to sign you up. If you are a supporter of The Arc, who will be attending Convention this year, please be sure to stop by The Market this year to support these wonderful microbusinesses from across the country!

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The Arc Celebrates 22nd Anniversary of the Americans With Disabilities Act

/in /by The Arc

Washington, DC – Today, The Arc joins with advocates across the country to celebrate the 22nd anniversary of the Americans with Disabilities Act (ADA). This landmark civil rights law was created to eliminate discrimination against people based on their disabilities. Members of The Arc’s national staff joined administration officials, including Senior Advisor to the President Valerie B. Jarrett, at the White House this morning to commemorate the signing of this historic law.

“As we celebrate the anniversary of the Americans with Disabilities Act, we must acknowledge the millions of advocates who made this law possible. Members of The Arc have spent the last 60 years working to promote full inclusion and equality for individuals with intellectual and developmental disabilities, but our work is far from over. Today, we look back on the many accomplishments of the last 22 years as we continue to work toward a future free of discrimination,” said Peter Berns, CEO of The Arc.

The ADA protects the civil rights of individuals with disabilities in employment, state and local government services, privately operated public accommodations (hotels, restaurants, stores, museums, etc.), transportation, and telecommunications. A person with a disability, as defined by the ADA Amendments Act of 2008, is someone who has a physical or mental impairment that substantially limits one or more major bodily functions or major life activities, a person who has a history or record of such impairment, or a person who is regarded as having an impairment.

The ADA’s integration mandate has helped many individuals with intellectual and developmental disabilities (IDD) leave institutions and move to community based settings. However, there are still many individuals living in nursing homes and other types of institutional settings who could and who want to live in more integrated settings.

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The Arc of New Jersey’s Statement on the DC Closure Taskforce Resolution

/in /by The Arc

The Arc of New Jersey released this statement on the Resolution of the State Taskforce on Institutional Closure. You can download it from the chapter’s website.

On July 23, 2012, the New Jersey Taskforce on Institutional Closure met. The Taskforce voted on and passed a binding resolution calling for the closure of North Jersey and Woodbridge Developmental Centers, in that order, over the next five years.

The Arc of New Jersey is grateful to the Taskforce for its painstaking and conscientious effort to thoroughly review the issue of closing state developmental centers; and we enthusiastically support its decision today to proceed with closing two of New Jersey’s seven developmental centers. The Arc of New Jersey believes that all individuals with intellectual and other developmental disabilities have the right to live, and be fully included, in communities of their choosing. For over thirty years there has been a clear direction in federal and state policy toward community living for individuals with intellectual and other developmental disabilities. As the census of New Jersey’s developmental centers has decreased, it has become clear that we simply do not need seven developmental centers.

We recognize the critical need for detailed planning and oversight in the process of transitioning developmental center residents into community-based settings. The Arc of New Jersey and its 20 local county chapters pledge to assist in this process in any way possible, to ensure the safe and appropriate placement of individuals with intellectual and developmental disabilities in the community, alongside their fellow citizens and peers.

From The Arc of New Jersey’s Media Center.

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The Arc Commends Governor Jack Markell’s New Initiative to Employ Individuals With Disabilities

/in /by The Arc

Washington, DC – This week, Delaware Governor Jack Markell was named Chair of the National Governors Association (NGA). Shortly after his appointment became official, the Governor announced that during his year-long term, his Chair’s initiative will be increasing employment among individuals with disabilities. The Arc fully supports Governor Markell’s efforts and applauds him for his work on behalf of individuals with intellectual and developmental disabilities (IDD) and other disabilities.

“Individuals with intellectual and developmental disabilities are capable of excelling in the workforce and giving back to the communities in which they live. We commend Governor Markell for bringing national attention to the employment challenges facing individuals with disabilities and for working to create employment opportunities for them through innovative public-private partnerships. The Arc has long recognized the need for employment opportunities for individuals with disabilities, and we look forward to supporting the Governor’s initiative,” said Peter Berns, CEO of The Arc.

A major emphasis of the Governor’s initiative will be on people who have significant intellectual and developmental disabilities and may require supports like job coaches and personal attendants in order to live and work in the community. Throughout the year he will convene governors, businesses, disability leaders, and other thought leaders. The initiative will focus on educating public and private sector employers and supporting state governments to join with business partners to develop and build out blueprints to promote the hiring and retention of people with disabilities.

The Department of Labor released statistics in 2011 stating that 17.8 percent of Americans with a disability are employed, compared to 63.6 percent of those with no disability. The Arc’s own research suggests that the employment picture for people with IDD may be even bleaker. In 2010, The Arc conducted and received over 5,000 responses to a national online survey called the Family and Individual Needs for Disability Supports, or FINDS Survey, to obtain perceptions of people with IDD and their families on a range of life-span issues. Only 15% of FINDS survey respondents reported that their family member with IDD was employed.

“The bottom line is that there are so many people with disabilities who have the time, talent and desire to make meaningful contributions to interested employers,” Governor Markell said. “More companies are recognizing that creating greater economic opportunity for these workers improves their own bottom line as well. It doesn’t matter whether you were born with additional challenges to face or – in the case of our wounded veterans for example – acquired them later in life. What matters is what you have to offer.”

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Take Action to Continue to Fight to End the “R Word”

/in /by Peter Berns

The Arc is continuing our efforts to end the use of the “R-word,” and unfortunately our work is not done. The latest instance of the use of the word was on the website of a Florida radio station. Not only was the station using this inappropriate language, but they were using a photo of a person with a disability without permission.

The Arc has a zero tolerance policy for using the R word, and as members of our movement, we always encourage you to get involved to put a stop to the use of the word and educate people about why it is hurtful. The Arc is a part of the “Spread the Word to End the Word” campaign, and we want you to add your voice online via their efforts on Twitter and Facebook.

What You Can Do

And you can go further, by encouraging your friends and neighbors to get involved with The Arc at the local, state, and national level. The larger our movement, the louder our voice.

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The Arc Connecticut’s Statement on Abuse Investigation

/in /by The Arc

According to media reports, the worker responsible for the abuse was arrested and criminally charged.

“The Arc Connecticut is deeply disturbed by the recent release of a videotape which appears to depict a staff member at a privately-operated group home physically abusing residents. This is obviously heinous and unacceptable behavior and the perpetrators should be prosecuted to the highest extent of the law. The Arc CT is confident that Options Unlimited, state regulators and authorities are investigating and will, and have, responded appropriately. For 60 years The Arc Connecticut has advocated for the basic civil and human rights for Individuals with IDD and their families and we continue to do so.”

– The Arc Connecticut statement

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Achieving in the Workforce With Acadia Windows and Doors

/in /by The Arc

The Arc Northern Chesapeake Region (The Arc NCR) in Aberdeen, Maryland works closely with the business community to provide employment opportunities to individuals that they support. In 2005, The Arc NCR established a business partnership with Acadia Windows and Doors in Baltimore. This partnership has employed over nine workers with intellectual and developmental disabilities from The Arc NCR to date with great success. Today, five of those workers are making a difference on the manufacturing floor by performing tasks resulting in production line improvements. They earn wages comparable to people without disabilities doing the same job for Acadia and interact with their peers at the company in an integrated work environment.

Jessica Markle, one of the individuals receiving services at The Arc NCR, works on the manufacturing production line installing wool pile used as weather stripping in every window. She received on-the-job training and support from a job coach, as well as transportation support to the work site each day. Jessica works independently in a warehouse with 63 other co-workers with and without disabilities on the manufacturing floor. She is able to accomplish her job independently even though she is legally blind and developmentally disabled. As a result of employing people with intellectual and developmental disabilities, Acadia Windows & Doors has a safer work environment and was awarded the Safety and Health Achievement Recognition Award from OSHA (Occupational Health & Safety Administration) in 2007 and again in 2011.

Here’s what Acadia’s Vice President of Manufacturing, Neill Christopher, had to say about this partnership with The Arc NCR:

Question: How did Acadia Windows and Doors’ partnership with The Arc NCR begin?

Answer: We didn’t partner with The Arc NCR to be altruistic; we partnered with them because to do so makes sense as a business decision. This is a great pool of workers. We had a great deal of trepidation when The Arc NCR first approached us. This is a manufacturing environment, with large sheets of glass, saws, and presses, all capable of inflicting serious injury. What we learned is that everything that we did to make things safer for our team members from The Arc NCR, made it safer for everyone else as well. We’re an OSHA SHARP site; proud of our safety record while striving to always make our facility safer for all who work or visit here.

Question: What are a few of the outcomes that have been evident through this partnership?

Answer: As promised, our team members from The Arc NCR are reliable. They consistently have exemplary attendance records, and always hit their production goals. As our partnership with The Arc NCR developed, we found that our company was changing in several positive ways. First of all, we worked better as a team. In planning to assimilate our new employees, we problem solved in a way that was different for us, and this new ability carried over into all aspects of our teamwork. We were learning to think differently, and forming interdepartmental relationships that hadn’t existed before.

Question: Are there any changes that surprised you as a result of hiring people with disabilities?

Answer: We found ourselves becoming a kinder company. Along with looking out for our team members from The Arc NCR, we began to look out for one another, too. It was a subtle change at first, but we’ve learned to embrace this change as we work together on a daily basis.

If I’m having a tough day, I’ll take a quick walk around our factory floor. Our team members from The Arc NCR take visible joy in their accomplishments, and are always eager to show what they’ve produced so far each day. Their joy is contagious, and I return to my office recharged and inspired by their example.

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The Arc Reacts to the U.S. Supreme Court’s Decision on the Affordable Care Act

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the U.S. Supreme Court’s decision to uphold the Affordable Care Act.

“People with intellectual and developmental disabilities have been waiting for generations for the insurance reforms put in place by the Affordable Care Act. Today’s ruling removes any doubts that the law Congress enacted should stand and will benefit millions of people with and without disabilities. It ends discriminatory insurance practices and makes health coverage more affordable and accessible – important protections which too many people with disabilities have been deprived of for too long.

“But the ruling is not perfect for people with IDD. The Arc is concerned that disallowing the federal government the ability to withhold Medicaid dollars from states that don’t expand their program to cover more of the uninsured might mean that people with IDD who would have benefited from the expansion could be left behind. Medicaid is an incredibly important lifeline for people with IDD, providing health care and long term services and supports.

“We will carefully watch how states react to this development and encourage our advocates across the country to put pressure on their state leaders to do the right thing and expand their Medicaid program,” said Marty Ford, Director of Public Policy for The Arc.

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Top Reasons Why The Arc Supports the Affordable Care Act

/in /by The Arc

Health Insurance Reforms in the Affordable Care Act (ACA)

  • Eliminates pre-existing condition exclusions
  • Bans annual and lifetime limits
  • Ends the practice of rescissions (insurance coverage is cancelled when a person develops a serious health condition)
  • Improves appeals process including independent reviews
  • Requires that 80% of health insurance premium dollars are paying for health care
  • Enhances state capacity to regulate unfair increases in insurance rates
  • Prohibits considering health status in calculating premiums (2014)
  • Requires guaranteed issue and renewals (2014)
  • Prohibits discrimination based on health status (2014)

The ACA Expanding Access to Coverage

  • Establishes temporary high risk pools to cover those who are currently uninsured (until 2014)
  • Allows coverage for dependents until age 26
  • Creates health insurance Exchanges for individuals and small employers to purchase insurance (2014)
  • Provides significant subsidies to assist low income individuals to purchase coverage in the Exchanges and provides tax credits to help small employers
  • Includes coverage of dental and vision care for children in the Exchanges
  • Includes mental health services, rehabilitative and habilitative services and devices, and other critical disability services in the health plans sold in the Exchanges

The ACA Expands Medicaid

  • Expands Medicaid eligibility to 138% of the federal poverty level
    • New method of income disregards
    • No asset test
  • 16 million new beneficiaries by 2019
  • Federal government pays 100% till 2016 (phase down to 90% in 2020)

The ACA and Long Term Services and Supports

  • Establishes the Community First Choice Option for states to cover comprehensive community attendant services under the state’s optional service plan
  • Improves existing Section 1915(i) option for home and community based services
  • Creates a new state balancing incentives to reduce institutional bias of Medicaid
  • Extends “Money Follows the Person” Demonstration
  • Authorizes the CLASS program

Other Medicaid and Medicare Improvements

  • Gives states the option to provide health homes for Medicaid enrollees with chronic conditions
  • Allows a free annual Medicare well visit with assessments and individualized prevention plan
  • Eliminates Medicare Part D (drug coverage) co-pays for dual eligibles receiving waiver services
  • Improves Medicare Part D access to key anti-seizure, anti-anxiety and anti-spasm medications

Selected Prevention, Provider Training, Data Collection and Accessibility Issues Addressed by the ACA

  • Eliminates co-pays for critical prevention services
  • Creates the Prevention and Public Health Fund (PPHF) to provide new funding for transformational investments in promoting wellness, preventing disease, and other public health priorities
  • Increases opportunities for training of health care providers (including dentists) on the needs of persons with developmental and other disabilities
  • Authorizes new training programs for direct support workers who provide long term services and supports
  • Improves data collection on where people with disabilities access health services and where accessible facilities can be found
  • Adds disability as a category to measure health disparities and in health care quality reporting surveys
  • Requires the establishment of criteria for accessible medical diagnostic equipment

Key Disability Data Regarding Access to Health Care

According to the Centers on Medicare and Medicaid Services (CMS):

  • 15% of the uninsured have at least one disability (HHS/ASPE Analysis of 2010 CPS self-reported data)
  • 12% of uninsured adults with incomes below 138% of the federal poverty level report limited ability to work or unable to work (Urban Institute Analysis of 2006 MEPS data)

Altman, B. Bernstein A. Disability and health in the United States, 2001-2005. Hyattsville, MD National Center for Health Statistics 2008

  • Adults 18-64 with cognitive difficulty, 13.6 % had no insurance, 32.1% private insurance, 41.0% Medicaid, and 27.0% Medicare.
  • Adults 18-64 with disabilities are less likely than those without disabilities to have private health insurance coverage – 46.3% for those with complex activity limitation and 61.3% with basic actions difficulty (61.3%) compared to 75.2% with no disability.

U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Children with Special Health Care Needs in Context: A Portrait of States and the Nation 2007. Rockville, MD: U.S. Department of Health and Human Services 2011.

  • Children with special health care needs – 29. 4% had inadequate coverage compared to 22.1% of children without special health care needs. Inadequate insurance is a far more prevalent problem than gaps in insurance or lack of insurance among children with special health care needs. (29.4% inadequate insurance whereas 12.3% had gaps in insurance or no insurance).
  • Children with special health care needs have unmet needs for specialty medical care—27% had problems accessing specialists and of the children with emotional, behavioral or developmental conditions, 48.4% did not receive mental health services.

Children with special health care needs are defined in the National Survey of Children’s Health as those who have one or more chronic physical, developmental, behavioral or emotional conditions for which they require an above routine type or amount of health and related services. 14-19% of children in the U.S. meet this need.

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The Arc Responds to New Report on Alcohol Intake During Pregnancy

/in /by The Arc

Washington, DC – The Arc is concerned about new research released earlier this week from Denmark stating that drinking low to moderate levels of alcohol during early pregnancy will cause no ill effects to children. The Arc’s over 700 chapters have a long history of raising awareness, educating and providing training to their communities about the dangers of drinking while pregnant. Unfortunately, studies like this serve to minimize alcohol’s severe effects on an unborn baby, placing doubt in the minds of mothers about the actual risk of drinking while pregnant. When studies are released that suggest alcohol intake can be safe during pregnancy, The Arc takes the opportunity to speak up and educate the public about the very real dangers of drinking while pregnant.

Fetal Alcohol Spectrum Disorders (FASDs) describe the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, behavioral, mental and/or learning disabilities with possible lifelong implications. FASD affects an estimated 40,000 infants each year – more than Spina Bifida, Down Syndrome and Muscular Dystrophy combined.

“Why put your baby at risk? Fetal Alcohol Spectrum Disorders are 100% preventable if mothers abstain from drinking during pregnancy. The Arc advocates not drinking during pregnancy, and will continue to push this message because studies like this ignore the fact that completely abstaining takes the risk of having a baby with a Fetal Alcohol Spectrum Disorder off the table,” said Peter V. Berns, CEO of The Arc.

As other opponents of the study highlighted, there are a number of factors that weren’t taken into consideration that warrant the public’s attention. These include the fact that some developmental delays are not detected as young as 5 years old, the differences in metabolism amongst women, and variances in genetic susceptibility.

The Arc advocates for and serves people with IDD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc, together with the Substance Abuse and Mental Health Services Administration (SAMHSA) Fetal Alcohol Spectrum Disorder Center for Excellence, recruits and supports the Self-Advocates with FASD in Action (or SAFA) Network. SAFA was established a little over a year ago to build and support a network of people with FASDs and give them the platform to be self-advocates.