Affordable Care Act Update: What You Need to Know About Open Enrollment

If you are uninsured or looking for affordable health insurance, now is the time for you to look! During “open enrollment” you can purchase private health insurance through the marketplace in each state. Depending on your income, you may be eligible for assistance with your health insurance costs.

If you currently have insurance through the marketplace, you should look at your current plan and determine if it will continue to meet your needs, or select a better plan. If you do not take action, you will be automatically re-enrolled in your current plan. Re-enrollment provides an important opportunity to report any changes to your income.

2015 Open Enrollment
November 15, 2014
Open enrollment begins

December 15, 2014
Enroll before this date to have coverage January 1, 2015

February 15, 2015
Open enrollment ends

Why you should check your coverage:

  • Even if you like your health plan, new plans may be available and premiums or cost sharing may have changed since last year.
  • Even if your income has not changed, you could be eligible for more financial assistance.

If you have a disability or a health condition, pay attention to possible changes:

  • Are a broad range of health care providers included in the health plan’s network of providers?
  • Are there enough medical specialists in the network to meet your needs?
  • Are needed medications included in the plan’s list of covered drugs?
  • Is there adequate access to non-clinical, disability-specific services and supports?
  • Does the plan have service limits, such as caps on the number of office visits for therapy services?
  • Are mental health services covered to the same extent that other “physical” health benefits are covered?

Where to get help?

Health insurance can be complicated. If you or your family member needs assistance with understanding the options, healthcare.gov can help. This website has information about seeking assistance in local communities, explanations of health insurance terms, enrollment information and much more. There is also a 24-hour phone line for consumer assistance at 1-800-318-2596 to call for help.

Social Security Announces 2015 Cost of Living Increase for Beneficiaries

Today the Social Security Administration (SSA) announced a 1.7 percent cost-of-living increase for 2015. This modest increase will help preserve the buying power of Social Security benefits for nearly 64 million Americans, including many people with intellectual and developmental disabilities who receive benefits under our nation’s Social Security system.

According to SSA, the average monthly Social Security retirement benefit will increase by $22, from $1,306 in 2014 to $1,328 in 2013. The average monthly benefit for a Social Security “disabled worker” beneficiary will increase by $19, from $1,146 in 2014 to $1,165 in 2015.

Higher Medicare premiums will offset some of this increase. Changes in Medicare premiums for 2015 are available at Medicare.gov.

Additionally, SSA today announced increases in important thresholds for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), including:

  • Substantial Gainful Activity (SGA) level – The SGA for SSDI and SSI will increase from $1,070 per month to $1,090 per month for non-blind beneficiaries, and from $1,800 per month to $1,820 per month for blind beneficiaries.
  • Trial Work Period (TWP) – The TWP for SSDI will increase from $770 per month to $780 per month.
  • SSI Federal Payment Standard – The SSI federal payment standard will increase for an individual from $721 per month to $733 per month, and for a couple from $1,082 per month to $1,100 per month.
  • SSI Student Earned Income Exclusion – The SSI student earned income exclusion monthly limit will increase from $1,750 to $1,780, and the exclusion’s annual limit will increase from $7,060 to $7,180.

Annual cost-of-living adjustments ensure that Social Security beneficiaries do not see their buying power eroded by inflation. SSDI and SSI benefits are modest, averaging only about $1,145 per month for SSDI beneficiaries in the “disabled worker” category and $535 per month for SSI beneficiaries. Every penny and every dollar counts for people who rely on these benefits to get by.

The Arc strongly supports ensuring adequate benefit levels, and has joined other national organizations to oppose proposals to reduce these much-needed annual cost-of living increases. Subscribe to The Arc’s Capitol Insider for updates to learn how you can help make sure that Social Security, SSI, and other vital supports are there for people with I/DD.

The Arc’s 2014 National Convention – A Rousing Success!

Thank you to all of the nearly 800 attendees who made it New Orleans for The Arc’s 2014 National Convention. We could not have pulled it off without the support from chapter staff, self-advocates, family members, and professionals in our network. You all help us make this event bigger and better every year. A lot of work went into designing a program that featured not only, educational opportunities and inspiration, but also the passion that brings The Arc’s mission to life.

Ron Suskind

Author Ron Suskind speaks with a fan at his book signing

The convention got started with an engaging and captivating opening session. Award winning author Ron Suskind gave an impassioned speech about his new book, Life Animated, that details the remarkable journey that his family went on to reconnect with Owen, their son who is diagnosed with Autism. His speech brought the audience to tears and to their feet. Ron truly felt at home in The Arc’s network and spent more than an hour ensuring everyone who wanted to get their copy of his book signed, talk to him, or even give him a hug was given the chance.

Director of National Partnerships for Comcast/NBCUniversal, Fred Maahs, spoke about his desire to use his position to bridge corporations and the non-profits that service communities. Fred also shared his personal story of his physical disability and how it has impacted his career and the goals he has for Comcast.

Throughout the convention, attendees were able to network and interact with chapter staff, sponsors, and national initiative partners. Self- Advocates showcased their products and services in Entrepreneur Alley. This year featured our biggest showing of self-advocate entrepreneurs yet!

But the convention wasn’t all work and no play. Early risers were able to “Wake and Shake” with Eruption Athletics. Chris Engler and Joe Jelinski of Eruption Athletics (EA) are able to bring physical fitness to people with intellectual and developmental disabilities through informative work out sessions that feature the EA patented Volcano PADD and specially designed music to help inform participants of the specific exercises they have to complete.

With the convention going off without a hitch, everyone was thrilled to participate in the local host event, which involved a second line parade from the Marriott hotel to The Presbytere. Onlookers from neighboring stores and restaurants waved the parade on, as everyone marched through The French Quarter. At The Presbytere, everyone was able to enjoy jazz music, light refreshments, and view the ongoing exhibits on Hurricane Katrina and the history of Mardi Gras.

Peter and Nancy with Local Hosts Barry Meyer and Kelly Serrett

(L to R) Barry Meyer, The Arc of Baton Rouge; Nancy Webster, President of The Arc Board of Directors; Kelly Serrett, The Arc of Louisiana; Peter Berns, CEO of The Arc

One of the highlights for many of the participants were the powerful self-advocates who shared their stories. During the opening session Betty Williams spoke about the importance of employment for individuals with I/DD and how The Arc has given her meaningful employment. Shaun Bickley had the crowd cheering as he spoke about his personal journey as an individuals with autism. In fact, his speech was so powerful he has already been booked for another gig. And finally, during the closing general session, James Meadours, a nationally-known leader in self-advocacy and a sexual assault survivor shared his personal story about his journey through the criminal justice system and how his lo­cal chapter of The Arc supported him along the way

The convention drew to a close on Thursday afternoon with a sneak preview of the documentary film Children of the Dumping Ground, followed by a discussion with the filmmaker, Chip Warren, led by The Arc’s National Center on Criminal Justice and Disability Director, Leigh Ann Davis. Board President Nancy Webster presented the President’s Award to Dr. David Braddock for his research regarding long-term care, health promotion and disease prevention, and public policy toward people with intellectual and developmental disabilities, and Jim Ellis was presented with The Arc’s 2014 Advocacy Matters Award.

For more pictures visit The Arc’s Flickr, and don’t forget to share your photos as well!

How to Make the Most of This Year’s National Convention

2014 Convention ArtworkMy name is Jill Egle, and as a self-advocate ambassador of The Arc, I enjoy welcoming new attendees to the annual convention. This year is extra special because it is being hosted in my very own hometown of New Orleans, Louisiana. The Big Easy, as they like to call it!

As someone who has attended The Arc’s National Convention in the past, I like to offer new attendees some tips on how to make the most of the convention. Some of my favorite things to do at the convention are to check out Entrepreneur Alley and The Arc Store. Entrepreneur Alley is where other self-advocates showcase their businesses and products. And The Arc Store is a great place to pick up new gear and gadgets. I also recommend you come to my session, on September 30th, from 2-3 pm, as well as the Self-Advocate Symposium that’s being held on Wednesday, October 1st, from 9:00 am until 12:00 pm.

There is a lot of information to take in and a lot of events and programs to sign up for. Some general tips for attending the national convention are:

  • Stay safe and be aware of your surroundings
  • Let others know where you are going
  • Keep your cell phone handy at all times
  • Always keep your bag or backpack close and closed. Keep your wallet or purse zipped up

With this year’s convention being held in New Orleans, you’re definitely going to want to go sightseeing, check out cool places to eat, and do some shopping. One of my favorite things to do is just walk around New Orleans. You could view the old mansions on St. Charles Ave or hop on a street car and go to Audubon Park and see the zoo. There are also several tours you can take part in:

And when you’re looking for good food and a fun time, I suggest heading to Mulates! Besides providing tourists (and locals) the best of New Orleans, Mulates also employs members from a local chapter of The Arc! It’s easy to get caught up in the excitement of being in a new city and attending the convention, but it’s better to be smart about where you’re going and what you’re doing. As you’re out, enjoying the nightlife of NOLA, remember to pay attention to where you are and always be alert.

If you follow these few tips, you’ll have a great time in New Orleans and at the convention.

Take care and enjoy NOLA!

Jill Egle

FASD Awareness Day

Today is International FASD Awareness Day! We celebrate this awareness day every September 9 (the ninth day of the ninth month), symbolizing the nine months of pregnancy, during which a woman can prevent FASDs by not drinking alcohol. FASD (Fetal Alcohol Spectrum Disorders) is an umbrella term describing the range of effects that can affect a person whose mother drank alcohol while pregnant. FASDs are the most common condition associated with intellectual and developmental disabilities (I/DD) that are 100% preventable.

The Arc is very active in both preventing FASDs from occurring, and in serving people who have FASDs.

The Arc’s FASDs Prevention Project

The project, funded by a cooperative grant from the Health Resources and Services Administration, informs and educates health care professionals/providers about the risks alcohol can pose to an unborn child. Up to 25% of woman continue to drink during pregnancy. Research with health care professionals and women of child-bearing age indicates that many professionals/providers still advise women that light to moderate consumption of alcohol, especially later in pregnancy, is safe. The prevalence of FASD supports the need for more education, alcohol screening, and intervention with women at risk of alcohol-exposed pregnancy. To that end, The Arc has created an FASD prevention toolkit for health care professionals to reinforce the message that no amount of alcohol is safe during pregnancy.

In addition to FASD prevention efforts, The Arc partnered with various organizations, including the Center for Disease Control (CDC), to create and promote an informational toolkit to help spread FASD awareness to all women of child-bearing age. With nearly half of all US pregnancies being unplanned, the awareness of the effects of alcohol on the developing fetus is an imperative message to provide to women.

The Arc’s National Center for Criminal Justice & Disability (NCCJD)

NCCJD is a training and technical assistance center funded by the Bureau of Justice Assistance whose mission is to pursue and promote safety, fairness and justice for all people with intellectual and developmental disabilities as suspects, offenders, victims or witnesses. People with I/DD are disproportionately represented in the criminal justice system. People with FASDs are more likely to be arrested and imprisoned, and are often repeat offenders—it is difficult for a person with an FASD to fully comprehend the rules and regulations of the court and probations systems, and they are often not adequately supported in navigating the criminal justice system. 50% of people with FASDs have a history of confinement in jail, prison, a residential drug facility or psychiatric hospital and the average age that children with FASDs begin to have trouble with the law is 12.8. These are statistics that NCCJD is working to change.

Self-Advocates with FASD in Action (SAFA)

SAFA is the nation’s first self-advocacy group created by and for people with FASDs in March 2011. Despite doubling in members, the group held their last face-to-face meeting in May 2012. SAFA is currently seeking support to continue their in-person meeting, and grow the network to include more local groups nationwide. With proper funding, they also hope to create a certificate program for members to take that will enable them to create presentations on FASDs to present to the community.

AnnaAnna is a founding member who is currently working in her home state of Alaska to help others with FASDs advocate and speak up for themselves. She worked at the Center for Human Development (the University Center for Excellence in Developmental Disabilities) and has been a member of the Governor’s Council on Disabilities and Special Education (The Council on Developmental Disabilities) for 10 years. Anna uses her voice and personal experience to help educate Alaska native people, women, and people who live in rural places about the effects of FASDs. Interested in learning more, or contributing to SAFA?

The Arc and the CDC, along with partners such as NOFAS, Better Endings New Beginnings, and SAMSHA FASD Center for Excellence, are dedicated to providing accurate information to the public, in order to help raise awareness to the 100% preventability of FASDs.

Social Security Trustees Release 2014 Report

The Social Security Trustees have released their annual report on the current and projected financial status of the Social Security trust funds. Similar to 2013, the 2014 findings show that Social Security is fully solvent until 2033, but faces a moderate long-term shortfall. In 2013, Social Security took in roughly $32 billion more than it paid out. Its reserves were $2.76 trillion in 2013, and are projected to grow to $2.9 trillion at the beginning of 2020. If Congress does not act before 2033, the reserves would be drawn down, and revenue coming into the Trust Funds would cover about 77 percent of scheduled benefits. The 2014 Trustees Report also continues to project that the Disability Insurance (DI) trust fund by itself can pay all scheduled benefits until 2016. If Congress takes no action before 2016, the Trustees project that the DI trust fund will be able to pay about 81 percent of scheduled benefits.

As noted by the Center on Budget and Policy Priorities (CBPP) and the National Academy of Social Insurance, the long-term growth in DI has been predicted since the mid-1990s and is largely due to demographic factors. The U.S. population and the number of workers insured for DI (particularly, women) have grown over the last several decades, and the baby boomers are now in their high disability years.

Traditionally, Congress has reallocated payroll tax revenues between the OASI and DI trust funds to address projected shortfalls. According to the Social Security Chief Actuary as summarized by the CBPP, a modest reallocation of the total OASDI payroll tax, enacted prior to 2016, would allow both programs to pay full scheduled benefits through 2033 — their current combined depletion date. After that, modest increases in revenue can ensure the long-term solvency of the Social Security system for generations to come.

The Arc strongly supports these types of adjustments to ensure the short- and long-term solvency of the trust funds, so that Social Security can remain a lifeline for people with disabilities and their families for generations.

“Come Pass a Good Time with The Arc Mon’ Amie”

2014 Convention ArtworkYou’re invited to enjoy the classic Southern city of New Orleans with The Arc as we network, learn and lead the movement for people with intellectual and developmental disabilities into the future!

The Arc’s annual National Convention is set for September 30 – October 2 in New Orleans, LA with more than 600 people who share your passion for disability issues. Absorb the energy of committed volunteer leaders, chapter professionals, family members and advocates. And keep your skills fresh by learning from the best in the field and sharing experiences with colleagues from across the country. Add your voice to those who are shaping the future of The Arc. Then take that energy and enthusiasm back to your community and lead the way to change.

Self-Advocates working togetherVisit our newly redesigned Convention website to find a little something for everyone:

  • For professionals:  Sessions dedicated to your professional and volunteer leadership development. New ideas, inspiration and networking opportunities, plus National Conference of Executives (NCE) training and activities!
  • For the grassroots: Sessions dedicated to advocacy and strengthening The Arc’s grassroots network, plus the hottest topics in the I/DD movement.
  • For people with I/DD: A symposium planned by and for self-advocates plus educational sessions with opportunities to learn, grow and connect with each other.
  • For everyone: Fun events and networking opportunities, a celebration with our local host, The Arc of Louisiana, plus shopping at microbusiness enterprises run by people with I/DD.

Visit http://convention.thearc.org to register now to take advantage of early bird discounts, Chapter and Family Passes and special room rates at the Marriott in New Orleans, LA.

Special Thanks to Our Sponsors: Comcast NBCUniversal, MetLife, Special Needs Alliance, DirectCourse, Hammer Travel, Mercer, Mutual of America, CARF International, Apostrophe Magazine, Wellpoint, Relias Learning and Insurance Benefits & Advisors.

Extraordinary Gifts…Unique Challenges

May is Williams Syndrome Awareness Month. Below is a guest post from Mike McFall of the Williams Syndrome Association with more information on this rare disorder and the association serving them.

Woman playing pianoWilliams syndrome (WS) is a rare genetic disorder caused by the deletion of 28 genes on one copy of an individual’s chromosome #7. Research is ongoing to determine the function of the genes in the deletion, and utilize that knowledge to help in the development of treatments for the various aspects of WS, but progress is slow. Eventually, it is hoped that research on the WS deletion will lead to treatments to help, not only those with WS, but others with Autism, diabetes, high blood pressure and anxiety disorders.

Williams syndrome affects 20,000 to 30,000 people in the United States. Families of affected individuals encounter major struggles. Individuals born with WS, share many common facial features as well as a constellation of medical, neurological and behavioral characteristics. Medical characteristics must be followed closely by physicians to prevent serious problems. Neurological and behavioral characteristics require therapeutic interventions and special educational strategies to provide the individual with the best chance for a happy and productive life. Most individuals with Williams syndrome have mild to severe cardiovascular disorders, often requiring surgery, and many suffer from kidney, bladder and gastrointestinal difficulties as well. Children with Williams syndrome can experience hyper – sensitive hearing, feeding problems as infants, developmental delays, poor motor skills, and mild to severe learning disabilities. As they grow, individuals with WS struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential, and few are able to earn a large enough salary to be self-sustaining.

Added to the challenges, though, are the extraordinary gifts of Williams syndrome. Unlike many disorders that can make connecting with your child difficult, individuals with WS tend to be social, friendly and endearing. Parents often say that the joy and perspective a child with WS brings into their lives had been unimaginable, and that their special personalities and perseverance help make dreams come true. Individuals with WS often know many more people in their communities than their parents. Adults with WS contribute to their communities as both paid employees and volunteers, working in restaurants, at senior centers and assisted living facilities, in libraries or as store greeters or veterinary aides. No matter what they are doing, individuals with WS make a special impact, and have a unique ability to quite naturally brighten the days of those around them. Individuals with WS also have a very special relationship with music. For most, there is a passion for music that in itself can help enrich their lives. For some, the passion blooms into a musicality and musical skills that far exceed their abilities in other areas.

Man playing guitarThe Williams Syndrome Association (WSA), Inc. was formed in San Diego, CA in 1983 by a handful of families of children with Williams syndrome. The mission of the WSA is “to help all individuals with Williams syndrome and similar characteristics reach their full potential.” The Association accomplishes its mission by providing a wide range of services – from programs and scholarships to resources and research support. The WSA is the most comprehensive resource for families living with Williams syndrome as well as doctors, researchers and educators. Since its inception, the WSA has touched the lives of more than 5000 individuals with Williams syndrome, from all 50 States and around the world, and lists an additional 8000 professionals, relatives and friends in its database. The WSA provides life-changing enrichment opportunities such as camp programs for youth and young adults to ages 6 – 21, and an annual reunion week for “Adventure Seekers”, adults with WS ages 21 through 35. Every two years, the WSA hosts an international research symposium, and a 5 day educational conference for families, and each year more than 150 social, educational and fundraising events provide opportunities for families throughout the U.S. to gather in celebration of their special children with WS. The Association also provides scholarships for all of its own programs (camps, conferences, and conventions) as well as other specialized enrichment and postsecondary/transition programs, and there is funding available for the non-insured expenses associated with the essential medical treatments required by many individuals with Williams syndrome. Special initiatives help to bring new information and valuable resources to families. Current initiatives are helping to bring assistive technology to students with WS, and housing models and program funding options to parents of adults.

The Williams Syndrome Association is volunteer-driven. It relies on the regular assistance of more than 100 volunteers in 18 geographic regions around the country. Above all, the Association is about family – it understands that families comprise the foundation and supports that we all need to navigate the frustrations and hurtles that life puts in our path as well as celebrate the special joys that come our way. The Williams Syndrome Association works hard to create a 2nd, more specialized family for its members to rely on – sharing in the joys that our children with Williams syndrome bring to us and to those in our communities, and offering supports, advice and resources when they are needed to overcome the medical, neurological, developmental and social challenges that come with the diagnosis of Williams syndrome.

Celebrating World Down Syndrome Day While Seeking Justice for Individuals with Down Syndrome in Today’s Society

On March 21st, 2014, the world will celebrate the ninth annual World Down Syndrome Day. While people with Down syndrome have made significant strides in education, employment, and independence, there is so much more we can do as a society to ensure people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

Ethan SaylorThe wrongful death of Ethan Saylor is just one example of the work left to do. Ethan, a 26-year old Frederick man who happened to have Down syndrome, died senselessly in the hands of three off-duty Frederick County Sheriff’s deputies in a movie theater in January 2013. Ethan’s death was tragic and avoidable. NDSS has advocated, alongside the Saylor family, for Governor Martin O’Malley of Maryland to ensure that law enforcement, first responders and other public officials all receive the very best training regarding interaction with people with disabilities and for the US Department of Justice (DOJ) to conduct an independent investigation into the death of Ethan Saylor. Emma Saylor started a change.org petition, which has gained over 370,000 signatures, calling for Governor O’Malley to investigate the death of her brother Ethan. In September 2013, Governor O’Malley issued an Executive Order establishing the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. This is Maryland’s chance to lead the way for other states on these critical issues, and ensure Ethan’s legacy lives on forever.

Just a few weeks ago in Atlanta, Georgia, Judge Christopher McFadden overturned a jury’s guilty verdicts against William Jeffrey Dumas. Dumas was convicted of repeatedly raping a young woman with Down syndrome in October 2010. According to his ruling, McFadden claims that a new trial is necessary because she did not behave like a rape victim. Even as we celebrate World Down Syndrome Day, these moments of blatant discrimination deserve our attention. NDSS condemned the judge’s actions and through an op-ed response demanded that the state of Georgia Judicial Qualifications Commission begin proceedings to remove him from office. We can all get involved by supporting a change.org petition calling for McFadden’s removal; and that justice is done with the conviction being reinstated.

Last week in Plaquemine Parish, Louisiana, a mother of a baby, Lucas, who happened to have Down syndrome, was charged with his death after poisoning him—an action that deserves condemnation and for which justice must be sought.

While we can take pause today and celebrate the achievements of people with Down syndrome all around the world, we must be reminded that for us to fully achieve our mission of equality and inclusion, we must ensure that all people with Down syndrome and other disabilities are valued, respected members of their communities. The work and partnership of The Arc’s NCCJD and NDSS is vitally important to making sure people with Down syndrome and other disabilities have the right to a meaningful life in their communities, whether it’s through a career of their choosing, a living arrangement of their liking, recreational activities of their selecting, or just friendships of their electing. We, as the national advocate for people with Down syndrome, want to be sure what happen to Ethan Saylor and other tragic, unfortunate cases never happens again.

National Down Syndrome SocietyNDSS is proud to partner with The Arc’s National Center on Criminal Justice and Disability (NCCJD), a national clearinghouse on criminal justice and disability issues funded by Bureau of Justice Assistance, U.S. Department of Justice, that provides resources, information and referral, training, technical assistance and evaluation for criminal justice and disability professionals and programs. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome. Unfortunately, we learn about these tragic, unfortunate, and senseless cases involving individuals with Down syndrome every day; and we seek to advocate on the behalf of these individuals and their families as they seek justice. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome.

Spots Available for Self-Advocate Businesses at The Arc’s Convention

The MarketAre you an individual with an intellectual or developmental disability who has a small business enterprise? Or, do you know someone who might fit this description? The Arc is looking for self-advocate entrepreneurs to promote their business enterprises at our National Convention in New Orleans September 30-October 2, 2014.

Spots are available for you to have a table in Entrepreneur Alley, a part of The Marketplace exhibition space at the Convention. You can showcase your business to the more than 600 people we are expecting to attend. The Arc offers a highly reduced rate of only $100 per exhibit for those who sign up before June 1.

JennyLu JewelryAnd, for those who can’t travel to New Orleans, we also offer “The Market” – an opportunity for you to let us sell or promote items for you for only $50 plus 10% of gross sales.

Get more details here. Contact Sarah Kennedy via email or at 202-534-3720 for additional information or to sign up today. Remember the deadline for special rates is June 1. After June 1 rates will increase.