From Small Towns to the White House – The Arc’s Interns Perspective on Celebrating 25 Years of the ADA

By Taylor Woodard and Mike Nagel

UnknownJuly 26, 2015 will mark the 25th anniversary of an important, but too often overlooked, moment in civil rights history: the signing of the Americans with Disabilities Act (ADA). The Arc’s Paul Marchand public policy interns, Taylor Woodard from Junction, Texas and Mike Nagel from Wyndmere, North Dakota, both of whom ventured into the nation’s capital determined to change disability policy, had front-row seats to the White House’s official ADA commemoration. Here is a description of that historical occasion though their eyes.

We were in awe as we were escorted through the halls of the epicenter of U.S. government by various members of the Armed Forces. Once at the celebration, we excitedly wandered through elegant corridors and ornate rooms, nibbled hors d’oeuvres, and mingled with disability community leaders and advocates as we waited for the President’s remarks. Photos and videos do not do justice to the elegance of this magnificent building.

After we had soaked in the scenery for a bit, we made our way to the East Room, where the main event was to be held. We were fortunate to snag front-row seats to hear President Obama’s address. From here, we could see so many prominent figures of the disability rights movement: former Senators Tom Harkin and Bob Dole, former Congressman Tony Coelho, as well as Representative Steny Hoyer, House Minority Whip. Finally, the big moment arrived: President Obama, followed by Vice President Joe Biden, stepped up to the podium and began.

With great passion, the President spoke of “tear[ing] down barriers externally, but…also…internally.”   He continued, proclaiming “That’s our responsibility as Americans and it’s our responsibility as fellow human beings.” For young advocates like us, the President’s words certainly ring true: attitudes in society can be, and often are, barriers in and of themselves. And we, as well as all advocates, must remember these truths as we strive for a more inclusive tomorrow.

In closing, President Obama poignantly outlined the accomplishments of the past 25 years as well as laid a path for the future. For us, this future would include ending unnecessary restraint and seclusion, assuring a high-quality education for all, creating supports and services for people with I/DD to live and work in the community, and protecting rights to self-determination and quality of life.

As the crowd applauded, a very different cheer erupted several thousand miles away in two of the nation’s tiniest rural communities, as our proud parents watched their son and daughter shake the hand of the President, a moment we will never forget.

Supreme Court Delivers a Major Victory against Housing Discrimination

This week, the U.S. Supreme Court issued several landmark decisions for all Americans, including people with intellectual and developmental disabilities and their families.

In a 6-3 opinion in King v. Burwell, the Supreme Court held that federal tax subsidies are being provided lawfully in those states that have decided not to run the marketplace exchanges for insurance coverage. This is a huge win for the Affordable Care Act and people with disabilities throughout the country.

Less prominent, but a tremendous victory for civil rights, is the Supreme Court’s 5-4 decision in Texas Department of Housing and Community Affairs v. Inclusive Communities Project, Inc. – a ruling that will support the continued progress of people with disabilities and other minorities toward full inclusion in all aspects of American life.

In this case, the Supreme Court ruled that housing discrimination is illegal, even if it is not intentional. This decision upholds a longstanding principle under the Fair Housing Act, known as “disparate impact.” By finally settling the question of whether the language of the Fair Housing Act allows for claims based on disparate impact, as the Civil Rights Act of 1964 does, the decision supports our nation’s progress toward integrated, inclusive communities that foster opportunities for all Americans.

In the case, a fair housing advocacy organization sued the state of Texas, alleging violations of the Fair Housing Act for awarding federal tax credits in a way that kept low-income housing out of predominantly white neighborhoods, thereby denying minorities access to affordable housing in communities where they might access better schools and greater economic opportunity. The state was not accused of intentionally excluding African-Americans from predominantly white neighborhoods, but of structuring its tax credit assignments in such a way that they had a discriminatory effect.

At stake in this case was not only the claims brought against the state of Texas, but also whether the key legal protections provided under disparate impact would continue to be available under the Fair Housing Act.

As noted in the Supreme Court’s majority opinion, Congress enacted the Fair Housing Act of 1968 following the assassination of Dr. Martin Luther King, Jr. “to eradicate discriminatory practices within a sector of the Nation’s economy.” As amended, today the Fair Housing Act prohibits discrimination in housing on the basis of disability, race, national origin, religion, gender, and familial status.

Disparate impact is a legal doctrine that holds that the Fair Housing Act and other civil rights laws prohibit policies and practices that discriminate, whether or not the policies were motivated by the intent to harm a particular group.

For over 40 years, the disparate impact doctrine has been a key tool protecting the rights of people with disabilities, people of color, and other groups covered by the Fair Housing Act and other civil rights laws to have equal opportunity to live and work in the communities that that they choose. It has formed the basis for federal regulations and has been used extensively by the Department of Justice, the Department of Housing and Urban Development, and civil rights organizations to fight housing and employment discrimination across the United States.

The ability to allege disparate impact under the Fair Housing Act has been upheld by 11 federal appeals courts, but the Supreme Court has never before issued an opinion in a fair housing disparate impact case.

Fortunately, a majority of the Supreme Court upheld the disparate impact standard, finding that recognition of disparate impact claims is consistent with the Fair Housing Act’s central purpose.

This week’s decision marks an important milestone in our nation’s path toward integration and inclusion. It’s a major victory that shores up the progress that people with disabilities and civil rights organizations have made over the last four decades, and strengthens our ongoing work to end discrimination in all its forms.

To learn more:

Calling it Modern Doesn’t Make It Good – No “Modern Asylum” Will Benefit This Generation of People with Disabilities

Recently, Dr. Christine Montross made what The Arc believes to be a deeply flawed argument in favor of institutionalization for individuals with intellectual and developmental disabilities (I/DD), or as she put it, “a modern asylum”. Dr. Montross failed to address a number of key factors in her piece, but what was most disturbing was the complete lack of reference to the desires of individuals with I/DD.

When The Arc was founded, nearly 65 years ago, it was all too common for doctors to tell parents that the best place for their child with I/DD was in an institution. Emboldened by their collective desire to raise their children as part of their families and communities, and their refusal to accept institutionalization as the only option, The Arc’s founders fought for inclusion. To this day, The Arc stands by the belief that all people, regardless of disability, deserve the opportunity for a full life in their community where they can live, learn, work and play through all stages of life.

The vast body of research on deinstitutionalization has established that moving from institutional settings and into smaller community-based ones leads to better outcomes for people with I/DD (Kim, Larson, & Lakin, 1999; Larson & Lakin, 1989, 2012). In fact, studies continue to show that people with I/DD benefit from moving to the community from an institutional setting. More powerful than any of the research are the stories from individuals who transitioned from institutions into the community. These stories breathe life into this research and The Arc’s mission.

Dr. Montross’ op-ed offended many readers, but it did highlight a systemic issue. Many health care providers will not accept people with I/DD as clients, or do not feel that they have the expertise to appropriately serve them. Furthermore, there are practitioners who will not accept clients who are reliant on Medicaid as their primary payer of health care services due to low reimbursement rates. Combined, these issues create a system that doesn’t always adequately serve all people with I/DD.

Weaknesses in the ability of some community-based mental health treatment systems to adequately meet the needs of clients does not necessitate the return of people to archaic institutional settings. Instead, it should lead to a public outcry for vast and immediate improvements in the capacity of communities to provide mental/behavioral health care to those who need it. The Arc strongly believes that the solution is not to move back to antiquated institutions. The way forward does not, as Dr. Montross states, “[include] a return to psychiatric asylums.” The way forward includes serving all citizens and demands an evolution in the attitudes of health care practitioners which includes the belief that all people, regardless of disability, deserve the same opportunities to enjoy full lives in their communities.

While there is no denying the issues she references, as often as possible the choice of where to live must be made by the individuals who will be impacted. And, as history has shown, the approach suggested by Dr. Montross has been attempted in the past and it resulted in Willowbrook and countless other atrocities in the name of “patient care.” While community supports for individuals with I/DD can benefit from improvement, we have come too far to take a step back towards segregated settings.

We welcome a discussion with Dr. Montross. Our hope is next time she has a national platform like the New York Times she chooses to consider the desires of individuals with I/DD and the history of isolation and oppression they faced in institutions before making suggestions about what is best for them.

The Arc Joins #GivingTuesday

#GivingTuesday buttonThis year, The Arc of the United States is joining the national movement of #GivingTuesday to kick-off the holiday season. On the heels of Black Friday and Cyber Monday, #GivingTuesday is meant to inspire people to take collaborative action to improve their local communities and give back in better, smarter ways to the charities and causes they support to help create a better world.

Join us in harnessing the power of social media to demonstrate the vibrant community of champions that make up our movement.

Throughout the year, we have focused on the amazing advocates that make up The Arc and allow us to succeed. On #GivingTuesday, we ask you to show us your support by giving a donation or simply sharing that you support The Arc.

Ways to participate:

Twitter logo Twitter logo
  • Encourage your friends and family to do the same.

The Arc recognizes that all the work we do would not be possible without our champions and that not all support comes in the same way. Thank you!

Help The Arc kick off the holiday season strong and Achieve with Us!

 

 

 

Thank You! You Mean the World to The Arc

This year at The Arc’s National Convention we asked the over 800 attendees, “What Does The Arc Mean to You?” and the response blew us away! With Thanksgiving right around the corner, we here at The Arc have been contemplating the same question and our resounding answer is YOU!

The Arc is incomplete without you and your dedication to our mission to ensure that those with intellectual and developmental disabilities live a fully inclusive life. You breathe life into our mission and together we will be successful.

From the board and staff of the National office of The Arc, please accept our sincere and deep appreciation of YOU and your ongoing support of our cause nationally, statewide and locally.

We could not have accomplished all that we did this year without you, so this holiday season we wanted to THANK YOU for your commitment, support and generosity to The Arc.

From all of us here at The Arc, we wish you a safe and happy Thanksgiving.

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