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

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

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

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.

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Our Journey to Bring “Our Friend Mikayla” to Schools Across Pennsylvania

By Kim Resh, mother to Mikayla Resh

It is a certainly a most amazing accomplishment that Our Friend Mikayla, the book inspired by my daughter and written and illustrated by her third grade classmates, is now in every public elementary school in Pennsylvania. Still, I’m really not entirely surprised. I believe in kids. I always have. And if at any time I had doubts, kids have always renewed my faith.

No matter how certain we were of our decision to include Mikayla in a regular education classroom, we were afraid of how the other kids would react and respond to her. But our fears were unfounded. From the very first day, the children wanted to push her in her wheelchair, sit next to her at lunch, even turn off her feeding pump when it alarmed. So when they grew old enough to write their story, I knew theirs was a message worth sharing.

I’ve always said that even if the book was never published, the time we all spent working together was an incredible experience. Our honest discussions were priceless and are clearly portrayed through the kids’ writing. When I edited their words into one story, I was surprised at how easily the book wrote itself. And to be honest, almost everything else has fallen into place with equal ease.

I wrote one grant for publishing. That was approved, and another organization asked to help. Individuals and families privately donated copies of Our Friend Mikayla to their own school libraries. It was obviously more difficult to find donors for a statewide distribution program so I am grateful to Walmart and Air Products for their grants, which respectively afforded the printing and mailing of books across the state.

Still, am I surprised every public elementary school finally has a copy? No, humbled and most appreciative, but not surprised. It is all about the kids. They are smart. They understand more than adults at times. Young children are innocent and pure, capable of unconditional friendship and compassion. If learned young, these lessons last forever. By including our students with and without disabilities in the same classrooms, they will teach other life’s most important lessons. Our Friend Mikayla is not just a book, it is a wonderful example of what is possible in every school across the state, country, and beyond.

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Charging Through Belle Isle Raceway With The Arc

By Laurie Istook, wife of driver Don Istook

As Don and I tour the country for the Pirelli World Challenge, we have had the opportunity to meet many amazing individuals with intellectual and developmental disabilities (IDD) through The Arc Audi Racing Program. Most recently we were in Detroit at the Belle Isle Raceway. We were joined by staffers and self-advocates from The Arc of Western Wayne County.

The time leading up to the race and prepping with our new friends from The Arc was wonderful. From teaching them about the car, to having them help Don and his team get ready for the race it was an exciting time for all of us. The real highlight came after the race when Don won the “Hard Charger” award for the race. He won because he moved ahead of more cars during the race than any other driver.

While accepting his award on the winner’s podium, Don dedicated it to my brother Mark and our visitors from The Arc.  He let everyone know that people with intellectual and developmental disabilities can be “hard chargers” too if they are just given the chance.

We look forward to more races, victories, and of course to continuing our work with The Arc and their local chapters.

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Meet Teddy: Self-Advocate, Entrepreneur, and Inspiration

By: Annette Downey, Director of Community Living Services of Oakland County in Ferndale, Michigan

Teddy Fitzmaurice is a 28 year old energetic entrepreneur with Down syndrome who promotes human rights and disability advocacy. Teddy lives in his own apartment and loves to play his music loud and watch TV whenever he wants. He enjoys taking care of his bunnies, Chloe and Amy, walking, running, biking, swimming, and hanging out with his many friends.

Teddy began his own business, Teddy’s Ts, in 2006. He sells T-shirts that come in many sizes, along with a multitude of buttons. Teddy has taken his business around the country including Washington DC, Chicago, New York, San Juan, St. Louis, and Columbus just to name a few of his stops. He also displays his shirts in several stores.

The logos displayed on Teddy’s t-shirts and buttons promote improved quality of life, social justice, and equality for all. Teddy promotes community living, self-determination, inclusive education, and people first language. His merchandise proudly displays messages such as “Label Jars, NOT People”, “Shred the word – R E T A R D E D” and “Disabled, Sexy, and Proud!”. Teddy uses a variety of creative methods to share his vision and passion for advocacy.

Always the happy salesman, Teddy is eager to attend every conference he can to sell his shirts. Teddy’s products are creative and inspirational, and they promote disability rights and social justice.

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Finding Your Perfect Summer Job

With summer’s arrival, thousands of teens across the country are looking for their perfect summer job. Individuals with intellectual and developmental disabilities (IDD) have a lot to consider as they start applying for summer jobs, and we hope the following resources will be useful as they begin the process not only for summer employment, but for a meaningful long-term career.

For a comprehensive list of terms that will help you or your loved one as they begin to look for a job, visit the Autism NOW Center’s employment glossary. This compilation will explain some terms that may otherwise be confusing and answer questions about different work environments.

Planning is key. If you break your job search down into a series of small, workable tasks, the process will be more manageable. One way to keep tasks in order is to create a 30-Day Placement Plan. The following brief provides a placement plan form, along with instructions about how to use it: The 30-Day Placement Plan: A Road Map to Employment.

The Arc’s Resource Center has a number of links to help you learn about additional programs, and how to utilize the transition services that you already have in place to find employment.

There are also a number of resources available in your community:

  • Contact your state or local IDD agency or State Vocational Rehabilitation Agency for information about employment services for people with disabilities in your area.
  • If you are a student age 16 or older who receives special education services, your Individualized Education Program, or IEP, should include a transition plan with goals for your transition to adult life, including employment. While you are still in school, you should be learning how to find a job or continue your education after you graduate.
  • Contact your local chapter of The Arc. They can assist you in finding out what you need to do and who to contact in your area. Find your local chapter’s contact information.
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Wings for Autism Workshop: A Parent’s View

By Tonia Ferguson, Director, National Initiatives, The Arc

Last month, I had the pleasure of attending Wings for Autism Workshop at Logan International Airport in Boston, MA. As a parent of a child with autism I didn’t know what to expect, but was excited to participate. I can’t even begin to describe what a wonderful program this is and how much of a difference it can make to children on the spectrum and their families.

I’ve never travelled with my son, Jared because I have always had concerns about how he would deal with security and the excess of people and noise that fill airports on a daily basis. Observing the way that Wings for Autism addressed the concerns I had, and went into further detail to prepare individuals for all the aspects of travel truly impressed me.

The daylong event gave parents and children a “test run”, where they went through every step of traveling on a major airline. With volunteers from JetBlue including flight attendants and pilots, officials from the Transportation Security Administration (TSA), ticket counter agents, and collaboration with other airlines and their staffs the simulation truly prepares parents and children for what to expect when traveling. The simulation requires families to clear security, board the plane, fasten their seatbelts, and prepare for take-off. A highlight for the kids was a tour of the cockpit given by a pilot.

For children that are having issues with the various parts of the simulation there are behavioral specialists on hand to help parents and children work through any problems they may be having.

While this event is intended to benefit the families participating, I was impressed to see the volunteers from TSA and JetBlue benefiting from the experience as well.

The Arc’s national office plans to work with The Charles River Center (a chapter of The Arc) to expand Wings for Autism. If you are interested in the program and want to find out how to bring a workshop an airport near you, please email

This experience opens up a world of possibilities for my family and other families with children on the spectrum, the sky’s the limit. I look forward to working with Wings for Autism as they expand this innovative program and I hope to take Jared to a simulation at our local airport in the near future.

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The Arc of Alameda County Shifts Gears

By Richard Fitzmaurice, Director of Community Relations at The Arc of Alameda County

It was loud. It was smelly. It was crowded. It was the thrill of a lifetime!

Eleven of The Arc of Alameda County’s 600 clients traveled some 100 miles south to California’s central coast for the Monterey edition of the Pirelli World Challenge motor race.

It was not the typical community-based excursion.

Carrying personal belongings in backpacks specially designed for The Arc of Alameda County, the group entered Laguna Seca raceway and was immediately dazzled by the sights, sounds, colors and cars. Of particular interest was the white Audi TT RS with The Arc’s logo on the hood sandwiched between the Revo technik and Pirelli logos.

Representing The Arc of Alameda County was: Peter Parkins, Angel Peregrina, Dania Leyva, Peter Roe, David Robinson, Laimone Williams, Nelvin Goree, Annick Woodall, Dominic Lerona, Kenneth Lee and Terry Newman.

Staff members included Mark Caleira, Jr., Ed Segovia and Juan Ramirez. They were assisted by Joann Scruggs and Raymond Gaddis.

The Arc crew was immediately ushered not to the usual grandstand seats but straight to the pit where they served as honorary members of the ISTOOK’s Motorsports pit crew. After enjoying a homemade bag lunch and helping wax the car, driver Don Istook and his wife Laurie offered insights into the world of racing.

“He told us about the car – showed us how everything works,” said David Robinson, a client at the vocational development center in San Leandro.

It was personal experience involving family members with intellectual and developmental disabilities that led Don and Laurie Istook, owners of ISTOOK’s Motorsports, to form a partnership with The Arc and create the Arc Audi Racing Program. It was that focus on the abilities – not disabilities – of the people we serve that made the Istooks comfortable giving The Arc of Alameda group total access to the pit. Clients even got to check out the other cars.

“I got to meet other drivers,” said Angel Peregrina also of San Leandro. “Don was nice and super helpful.”

“Everyone was great,” commented Community Service Manager, Mark Caldeira. “Even crew members not affiliated with ISTOOK’S Motorsports took time to explain what they were doing and why they were doing it. It could not have been a better experience for our clients,” he said.

As race time approached, the Arc crew was invited to participate in “the walk to the grid.” Don, who also has The Arc logo on his race suit, climbed into the Audi and fired up the 2.5L turbocharged engine and began creeping toward the gate leading to the track. The Arc crew walked along side.

“It was loud but it was good,” said Peregrina.

When the race started, clients were in their seats and gave Don a huge cheer on every lap as he passed by.

Monterey was the third stop on the Pirelli World Challenge seven-race circuit. At each venue, the Istooks invite local chapters of The Arc to attend. They even invited the Alameda County group to return to Laguna Seca next year.

“We’re going. We’re definitely going!” Peregrina said with a huge smile.