The Arc Celebrates the ADA’s 25th Anniversary

On July 26th we will celebrate the 25th anniversary of the Americans with Disabilities Act (ADA). The ADA affirms the rights of citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities, and telecommunications. It is a wide-ranging law intended to make our society accessible to people with disabilities.

The Arc played a leadership role in the passage of the ADA. Our volunteer leadership, state chapters, local chapters, and public policy staff worked closely with others in the disability community to make the ADA a reality. The bottom line is that the passage of this transformative legislation would not have been possible without the hard work of Congressional leaders and disability advocates, like you! As we celebrate this monumental achievement and the 25 years of implementation of this law, we can’t help but reflect on what the ADA really means to individuals with intellectual and developmental disabilities and their loves ones.

To commemorate this special anniversary, we asked members of The Arc’s National Staff to share with us what the ADA means to them. You can read a few of the responses below.

We invite you to visit our social media channels, on Facebook (The Arc US) and Twitter (@TheArcUS) and share with us what the ADA means to you. We want you to be part of the larger conversation so be sure to use the hashtag #ADA25.

“I have been a participant in so many meaningful opportunities.  I attended two very highly respected universities; I have travelled extensively, from Kauai to Istanbul to Moscow.  And I interned and worked for a prestigious corporation on Wall Street.  Each of these experiences has been the product of public policy, for I am an individual with a physical disability. It was through the National Business and Disability Council (NBDC) that I secured a summer internship in New York City.  In light of these life events, is it any surprise that I am totally convinced of the power of ADA to transform lives?” – Taylor Woodard, Paul Marchand Intern, The Arc

“I have the ADA to thank for bringing me to The Arc, and introducing me to what has become a life-long commitment to advocating with and for people with disabilities. About 20 years ago, I was hired to direct an ADA project that created materials for criminal justice professionals about accommodations people with intellectual and developmental disabilities need in order to receive fair treatment in the system. This seed money from the Department of Justice eventually led to the creation of a national center in 2013 (see http://www.thearc.org/NCCJD). It’s frightening to think how the lives of people with disabilities would be different today without the passage of the ADA. It’s equally exciting to dream about what the next 25 years may hold!” – Leigh Ann Davis, Program Manager, The Arc’s National Center on Criminal Justice and Disability

“I’ve had the honor of supporting individuals with disabilities and their families since 1978. Back then professionals were taught that we knew best. The idea that a professional would ask a parent, let alone a person with a disability, what they wanted out of life was unheard of. Once the ADA was enacted many professionals were slow to support the paradigm shift from institutionalization to specialized services to full community membership. I’m grateful that my world opened. I count myself as a supporter, listener, and friend.  I’m a follower and not a leader. I join in celebrating the fact that more and more people with intellectual disabilities are living full lives in their communities. However, we still have a very long way to go since so many remain ignored and unfilled. So as we celebrate, let’s not forget the 1980 battle cry from Senator Ted Kennedy, ‘For all those whose cares have been our concerns, the work goes on, the cause endures, the hope still lives and the dream shall never die.’” – Karen Wolf-Branigin, Senior Executive Officer, National Initiatives, The Arc

“Having two siblings with I/DD and working as a disability rights attorney, I see the profound value of the ADA in both my personal and professional life. While there is still so much more work that needs to be done to make our systems work better for people with disabilities, much of the progress we have achieved and continue to work towards every day at The Arc and throughout the disability advocacy community would simply not be possible without the vital protections and enforcement mechanisms the ADA provides. I am eager to see what we will achieve over the next 25 years as we continue to use the ADA as a fundamental tool to protect and enforce the civil rights of individuals with disabilities!”- Shira T. Wakschlag, Staff Attorney, The Arc

“The ADA certainly transforms lives, as I can attest to. It has helped me to reach my goals and enabled me to be a trailblazer and set the way for individuals with autism and other developmental or intellectual disabilities. I have had numerous opportunities, one being able to participate in my DD council’s Partners in Policy Making program where I learned how to be a self-advocate and stand up for myself and others. It has also helped me to be employed at one of the most wonderful places to work, The Arc of the U.S.” – Amy Goodman, Director Autism Now, The Arc

White House Conference on Aging: A Critical Moment for Individuals with I/DD and Aging Americans

The White House Conference on Aging will be held on July 13, 2015, during a momentous year in which we mark the 80th anniversary of Social Security as well as the 50th anniversary of Medicare, Medicaid, and the Older Americans Act. The conference provides an opportunity to discuss these critical programs and find ways to strengthen them to continue to serve older Americans in the next decade.

These programs not only serve older Americans, but they also serve people with intellectual and developmental disabilities (I/DD). At The Arc, we are committed to advocating for people with I/DD and their families. This means ensuring that individuals with I/DD have services in place throughout their lifespan and that aging caregivers of people with I/DD have the support they need.

We spoke to advocates and caregivers to ask them what issues need to be addressed at the White House Conference on Aging. Here are their questions:

Carla Behnfeldt: I am 55 years old and live in Pennsylvania. My parents, who are in their 80s, and my 57 year old brother who has intellectual and developmental disabilities, all reside in upstate New York. My parents worked hard to find a good group home for him near their home and to get him Medicaid long term services and supports. Due to their age, my parents are in need of more and more support from me, and I would like for us all to live close together. I looked into having my brother move to Pennsylvania. I was shocked to learn that he might have to wait years to receive Medicaid services in Pennsylvania. And, there is no guarantee that Pennsylvania would provide him the services that New York does. My parents won’t move if my brother can’t move. The fact that my brother’s services can’t be transferred between states makes it very difficult for me to become my brother’s primary supporter and to provide my parents with the care they deserve as they age. What are your proposals to make Medicaid benefits portable between states?

Margaret-Lee Thompson

Margaret-Lee Thompson

Margaret-Lee Thompson

I am 70 years old.  For 21 years, I worked as a parent coordinator at The Arc of King County in Washington State. Our son Dan, who had Down syndrome, died when he was 36.  Many of the parents I worked with are in their 70s, and their children with intellectual and developmental disabilities are still living at home with them.   Their sons and daughters are middle-aged now, and when the family tries to get the government support that would enable the son or daughter to move into a new living arrangement, the families are told that they need to go on a waiting list.  These lists are often a decade or more long. The Community First Choice Option created by the Affordable Care Act, with its additional federal matching funds in 2014-15 will allow our state to be able to have the funding to move 1000 individuals onto our Basic Plus Medicaid Waiver.  But there are still 10,000 individuals and families in our state who have NO PAID SERVICES. The senior families have waited the longest. Many have simply given up asking for help. This is just wrong. It is not uncommon for the individual to lose their last parent, be moved from their home and be moved in with people they have never met – all on the same day. The parents should be able to support their sons and daughters while they transition to a new home. What are you doing to change things so these parents can live out their senior years with a sense of peace and comfort in the knowledge that their sons and daughters will live a good life after they are gone?

Pia Muro

Pia Muro

Pia Muro

I am 70 years old and live in Tustin, California. My younger daughter, Crystal, is 29 and has Down syndrome. She works at a senior center and lives at home with me. We’ve started the planning process as a family to make sure she continues to live a happy and independent life when I’m no longer able to provide support.

English is my second language and the planning process can be difficult to understand. What is being done to make sure that people from different backgrounds can get support from people who speak our language and understand where we are coming from?

Carrie Hobbs Guiden, Executive Director, The Arc of Tennessee

Carrie Hobbs-Guiden

Carrie Hobbs Guiden

There are nearly a million families in the United States in which adults with intellectual and developmental disabilities are living at home with an aging caregiver. Most do not have a plan in place for what is going to happen when these caregivers are no longer able to provide support.   There are many barriers to planning – including fear – but it is important that families make a plan for the future. They should gather information about the family’s history and wishes, and they should explore housing, employment and daily activities, decision making supports, and social connections.   What are your proposals to help these families to plan for the long term needs of their adult children with disabilities?

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

SSDI: Time for Action!

A lifeline of financial security for millions of Americans with disabilities, Social Security Disability Insurance (SSDI), is currently under attack. Congress must adjust SSDI’s finances by the end of 2016 to prevent a devastating one-fifth across-the-board cut in benefits. Writing in the Journal of Health and Social Work, The Arc’s T.J. Sutcliffe makes the case for how social workers and other professionals in the field can and should support necessary action to strengthen and preserve this vital support for people with disabilities and their families.

Sign up for The Arc’s Capitol Insider weekly e-news and periodic Action Alerts to stay informed on the latest developments and take action to support the SSDI lifeline.

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:

The Arc Applauds Supreme Court Ruling Upholding Subsidies to Purchase Health Insurance under the Affordable Care Act

Washington, DC – In its 6-3 King v. Burwell decision, issued today, the U.S. 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 (ACA) and people with disabilities throughout the country.

The case was brought by Virginia plaintiffs alleging that the ACA forbids the federal government from providing subsidies in states that do not have their own exchanges. These exchanges allow individuals without insurance to shop for individual health plans. Some states created their own exchanges, but others allowed the federal government to run them. Approximately 85% of individuals using the exchanges qualify for subsidies to help pay for coverage based on their income.

“Today’s Supreme Court ruling upholding the subsidies to purchase health insurance in the federal exchanges is good news for many Americans, including people with intellectual and developmental disabilities. This challenge could have weakened the law overall, threatening all the protections that people with disabilities gained in the landmark law. This ruling should end the effort to dismantle this law, and instead the focus should be entirely on effective implementation,” said Peter Berns, CEO of The Arc.

The ACA is important to people with disabilities. It expanded coverage and reformed insurance to end discrimination against people with disabilities and enhance access to health care. The private health insurance marketplaces allow individuals or small businesses to shop for coverage and potentially receive subsidies to help offset the cost of insurance. The subsidies are key to ensuring affordable coverage. The health insurance reforms, the protections from high premium increases or out-of-pocket costs, and the coverage of “essential health benefits”, including mental health care and rehabilitative/habilitative services and devices, help assure that people with disabilities have affordable health care that meets their needs.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 665 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc on New Study That Highlights Housing Crisis for People with Disabilities on Supplemental Security Income

This week, the Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force released a study, Priced Out in 2014. This publication is released every two years. The 2014 results show that the national average rent for a modestly priced one-bedroom apartment is greater than the entire average Supplemental Security Income (SSI) benefit for a person with a disability.

Priced Out in 2014 highlights an ongoing barrier to community living for people with disabilities – the lack of accessible, affordable housing. People with disabilities deserve the opportunity to live independently in the community, though as highlighted by Priced Out in 2014, many who rely on SSI face severe obstacles to that opportunity. While progress has been made over the last several years with a new, integrated housing model under the Department of Housing and Urban Development’s Section 811 program, our nation still has a long way to go. Having a place to call home is a basic human right. The Arc is advocating for Congress to adequately fund the Section 811 project rental assistance program to help address the housing crisis for people with disabilities.

SSI provides basic income to people with significant and long-term disabilities who have extremely low incomes and savings. According to Priced Out in 2014:

  • In 2014, the average annual income of a single, non-institutionalized adult with a disability receiving SSI was $8,995, about 23% below the federal poverty level for the year.
  • As a national average, a person receiving SSI needed to pay 104% of his or her monthly income in order to rent a modest one-bedroom unit. In four states and the District of Columbia, every single housing market area in the state had one-bedroom rents that exceeded 100% of SSI.
  • In 162 housing market areas across 33 states, one-bedroom rents exceeded 100% of monthly SSI. Rents for modest rental units in 15 of these areas exceeded 150% of SSI.
  • People with disabilities receiving SSI were also priced out of smaller studio/efficiency rental units, which on a national basis cost 90% of SSI. In eight states and in the District of Columbia, the average rent for a studio/efficiency unit exceeded 100% of the income of an SSI recipient.

The full results of the study can be viewed on the TAC website.

The Department of Housing and Urban Development (HUD) Section 811 Project Rental Assistance (PRA) program is an innovative new model that allows states to effectively target rental assistance to enable people with significant disabilities to live in the community. Section 811 is the only HUD program dedicated to creating inclusive housing for extremely low-income people with severe disabilities, including SSI recipients.

Osteoporosis Prevention

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

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

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

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

Some steps to take to help prevent osteoporosis are:

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

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

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

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

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

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

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

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

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

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

The Arc Applauds Introduction of SSI Restoration Act

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

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

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

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

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

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

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

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

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

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

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

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