An Open Letter to Suzanne Wright, Co-Founder, Autism Speaks

Yesterday I had the privilege of attending an event at the White House celebrating the 50th anniversary of President John F. Kennedy signing into law what later led to the Developmental Disability Assistance and Bill of Rights Act.  In light of this historic anniversary, I feel compelled to comment on your recent blog post leading up to Autism Speaks’ first National Policy and Action Summit earlier this week.

Back in 1962, President Kennedy’s Panel on Mental Retardation* called for our country to “combat” mental retardation, “[exploring] the possibilities and pathways to prevent and cure mental retardation.”  Here we are, 50 years of progress later, and your words connote the same sense that we are at war, suggesting that given the prevalence of autism we should call out the “Army, Navy, Air Force and Marines.”

Over the years, though, we have learned that war is no longer a useful metaphor to invoke and apply in the disability community.  People with autism, or for that matter other developmental disabilities, are not victims of the predations of some evil actor, nor are their mothers, fathers, sisters and brothers.  Instead, we appreciate, as stated in the Developmental Disabilities Act, that “disability is a natural part of the human experience.”

Unfortunately, your description of children with autism and their families is polarizing and divisive, creating rifts within a community that can ill afford it in these perilous times.  Characterizing people with autism and their families as victims suffering from a dreaded affliction ignores the diversity of the community of people with autism, as well as their creativity, perseverance, adaptability, resilience, and overall beauty of their human spirit.   It belittles the many who, rather than seeking to be cured, are striving for their human rights to be accepted and respected. It is far from reality for many people with autism whom I know and who are involved in our work.  All are deserving of dignity and respect.

Certainly, it is true that many individuals on the spectrum, and their families, face serious challenges on a daily basis.  The current system of social insurance and social services and supports fall well short of meeting the needs of too many who are in need of assistance.  To confront this reality and achieve progress on behalf of and with people with intellectual and developmental disabilities, including autism, the only successful path forward is one which unites, rather than divides.  We all must work together.

As you may be aware, The Arc is the nation’s oldest and largest nonprofit organization advocating on behalf of and serving people with all different types of intellectual and developmental disabilities.  Throughout our network of nearly 700 chapters in 49 states, The Arc serves and advocates on behalf of and with many individuals with autism – and we know that more can and should be done to ensure that people with autism are included in the community and have access to the services and supports to achieve their goals in life.   Solutions to the challenges people with autism and their families face are possible.

The Arc’s experience, over more than 60 years, makes clear that our power to achieve change is greatest when people with intellectual and developmental disabilities, their parents, brothers, sisters, professionals, colleagues and friends are all at the table.  Our voice is even stronger when we make it a priority to listen to what people with developmental disabilities have to say for themselves about their own lives.

Now is the time to come together – people with and without disabilities, including autism – to determine where we want to be tomorrow, next year and 50 years from now.  The rhetoric of 50 years ago has no place in today’s discourse.

Sincerely,

Peter V. Berns
Chief Executive Officer
The Arc

*The outdated term mental retardation is used in this context because it is the formal name of a panel in existence 50 years ago.  Today, the accepted terminology is intellectual and/or developmental disability.

The Arc Launches New National Resource Center on Justice and Intellectual and Developmental Disabilities

Office of Justice Programs SealWashington, DC – The Arc is pleased to announce it has been awarded a two-year grant for $400,000 by the U.S. Department of Justice, Bureau of Justice Assistance (BJA) to develop a national center on justice and intellectual and developmental disabilities (I/DD).  This is the first national effort of its kind to bring together both victim and offender issues involving people with I/DD under one roof.  According to the National Crime Victim Survey of 2010, the victimization rate is twice as high for individuals with disabilities as compared to those without disabilities.  And we don’t have to look far for examples where law enforcement and people with I/DD could have benefited from this kind of work, including the tragic death of Robert Ethan Saylor in Frederick, Maryland, who died earlier this year after three off-duty deputies attempted to remove him from a movie theater over a misunderstanding over a ticket.

The goal of this project is to create a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system – both as victims and offenders.

“When individuals with I/DD become involved in the criminal justice system as suspects or victims, they often face miscommunication, fear, confusion and prejudice. This new center will play a critical role in improving first response and communication between people with I/DD and the justice system.  No similar center on this topic exists, nor are there sufficient resources to address the gap in expertise in the field, and so this effort is long overdue,” said Peter Berns, CEO of The Arc.

The Arc will work closely with several other national partners within the criminal justice, legal and victim advocacy communities to research, analyze and replicate evidence-based solutions to the problems of injustice and victimization that have gone on for far too long within the I/DD community.  For example, people with I/DD are often unable to report crimes or are not seen as credible witnesses. They are also vulnerable to becoming perpetrators of crime, including sex offenses, and used by other criminals to assist in law-breaking activities. And with many forms of mild I/DD not being easily identifiable, justice personnel may not recognize that someone has a disability or know how to work effectively with the individual. Although organized training is available for criminal justice professionals on mental illness, few resources on I/DD exist. Many law enforcement and other justice professionals do not know the difference between mental illness and I/DD and often think they are synonymous.

“When our chapters work with their local law enforcement agencies, they hear time and time again that training is provided for mental health issues, yet that doesn’t encompass millions of people with I/DD living in our communities.  Through this grant, The Arc’s center will become a national focal point for the collection and dissemination of resources and serve as a bridge between the justice and disability communities,” said Berns.

The center will consist of a resource library, directories of expert witnesses, attorneys, forensic interviewers, and victim advocates, a database of relevant state laws, and hands-on technical assistance and training.  Additionally, The Arc will create a Justice and I/DD Certification program using training curriculum authored by Leigh Ann Davis, M.S.S.W., M.P.A., and hold five trainings around the country and web-based trainings.

The Arc Reacts to Latest Stumble in National Effort to Solve Long Term Care Crisis

Washington, DC – Last week, the Commission on Long Term-Care voted on recommendations that will be included in a final report to Congress, with the goal of renewing a national effort to address the issues and challenges of accessing affordable long term services and supports faced by millions of Americans.  The Arc commends the Commission on Long-Term Care for bringing attention to the serious crisis confronting our nation.  Unfortunately, given the unrealistic time frame and lack of adequate resources, the Commission was not able to reach consensus on the most critical issue facing our country – financing accessible, affordable long term services and supports for those who need them when they need them.

“Many family caregivers have told me that their biggest fear is what will happen with their adult son or daughter with a disability after they die.  Our research shows that nearly two-thirds of families don’t have a plan and they need help.   We must act now to find solutions so that seniors and people with disabilities can remain in their communities and obtain vital and affordable home and community based services.  Unfortunately, this latest effort failed to produce hope for families that include people with disabilities,” said Peter Berns, CEO of The Arc.

The Commission on Long-Term Care was established under the American Taxpayer Relief Act of 2012, signed into law January 2, 2013.  The Commission was given just six months to develop a plan to address this crisis which has plagued our country for decades, and provide Congress with recommendations for legislative action.

“We understand that the Commissioners did not have enough time to fully address the complexities of ensuring long-term services and supports for those who need them.  However, the importance of long term services and supports for people with intellectual and developmental disabilities cannot be overstated.  It is now imperative that Congress act responsibly to address the pending crisis in long term services and supports for seniors and people with disabilities.  The ball is in their court, and they have a responsibility to all of us to act,” added Berns.

The Arc believes that the principles of addressing the needs of people of all ages, helping people avoid lifetime impoverishment, ensuring that all working people can be covered, and focusing on community based services should be the basis of any reform.

The Arc Taking Lead on Educating Medical Professionals on Fetal Alcohol Spectrum Disorders with New Federal Grant Award

Washington, DC – Building on The Arc’s long history working on Fetal Alcohol Spectrum Disorder (FASD) prevention and providing services to people with FASD, The Arc is pleased to announce it has been awarded a more than $1.3 million cooperative agreement over three years from the federal Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau to increase the education of medical professionals regarding alcohol-exposed pregnancy and change clinical practice to better prevent FASD.

Drinking while pregnant can cause FASD, a preventable form of intellectual and developmental disability (I/DD).  Yet according to HRSA, 22.5% of pregnant women drink alcohol and many health care providers advise women that light drinking is safe.  Providers need education on drinking during pregnancy, screening tools and interventions that can prevent FASD.  The Arc, with the support of its national partners, will develop trainings including webinars, peer learning communities, and continuing medical education (CME) courses for allied health professionals, and create and disseminate culturally appropriate materials.

“This grant is a tremendous opportunity for The Arc to make a real difference in how the medical community views the risk of drinking while pregnant.  Working with key players in the medical sector, we expect to dramatically change the conversations happening in doctors’ offices,” said Peter Berns, CEO of The Arc.

The Arc will work with The Association of Reproductive Health Professionals, The National Hispanic Medical Association, The Association on American Indian Affairs, and the National Association of City and County Health Officials to carry out this grant.  The goal of this project is to increase provider knowledge of the risks alcohol poses during pregnancy and encourage prevention by:

  • Conducting a comprehensive needs assessment on the educational needs of providers;
  • Developing an educational plan for increasing provider knowledge of FASD prevention;
  • Working with national professional associations to create culturally and linguistically appropriate educational materials for a range of health care providers;
  • Disseminating materials to providers via national organizations’ networks and other channels; and
  • Assessing the impact of educational efforts on provider knowledge, practice, and prevention.

This award to The Arc comes at a particularly opportune time to capitalize on important changes in our health care system.  Thanks to the Affordable Care Act, starting in 2014, all health insurance marketplace plans and many other plans must cover select preventive services, including alcohol misuse screening and counseling, without charging a copayment or coinsurance when these services are delivered by a network provider.   According to guidance from the Department of Health and Human Services, alcohol misuse includes any alcohol consumption by women who are pregnant or trying to get pregnant.

And starting in October of 2014, the new edition of the International Classification of Diseases (ICD), the standard diagnostic tool for epidemiology, health management, and clinical purposes, will go into effect.  For the first time, there will be specific codes for FASD prevention and intervention.  These welcome and long sought additions to the ICD are expected to yield greater interest in prenatal alcohol exposure by medical professionals and encourage clinical interventions by creating billing codes for such services.

The project will be 100% funded by this cooperative agreement, funded by HRSA, grant # U1HMC26371.

The Arc Responds to New Study That Highlights Housing Crisis for Individuals with Disabilities on Supplemental Security Income

Washington, DC – This week, the Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force released a study, Priced Out in 2012. This publication is released every two years. The 2012 results show that the national average rent for a modestly priced one-bedroom apartment is greater than the entire Supplemental Security Income (SSI) benefit for a person with a disability. The Arc’s 700 chapters have a long history of supporting community living for individuals with intellectual and developmental disabilities (I/DD). Many chapters of The Arc provide programs and services to assist individuals with disabilities who are looking to rent or buy a home or find other community living opportunities.

“This study highlights a growing problem for individuals with disabilities – the lack of accessible and affordable housing. People with disabilities deserve the opportunity to live independently in the community with their peers, though as highlighted by Priced Out in 2012 SSI beneficiaries face severe obstacles to that opportunity. While progress has been made in the last year with the new Section 811 PRA Demonstration, we still have a long way to go. Having a safe place to call home is a basic human right and we have a responsibility to ensure individuals with disabilities are given the chance find a home in the community they choose. The Arc calls on Congress to adequately fund the Section 811 PRA Demonstration to help address the housing crisis for people with disabilities,” said Peter V. Berns, CEO of The Arc.

SSI is a federal program that provides income to people with significant and long-term disabilities who are unable to work and have no other source of income. According to Priced Out in 2012, a single person with a disability living in the community received an average monthly SSI payment of $726 in 2012 to cover all basic needs, including housing. The study also revealed that as a national average, people with disabilities receiving SSI needed to pay 104 percent of their income to rent a one-bedroom unit priced at the Fair Market Rent. 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) Demonstration 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 beneficiaries.

The Arc Reacts to New National Survey on Autism Prevalence

Peter Berns

Peter V. Berns, CEO of The Arc

Washington, DC – Today, the Health Resources and Services Administration and the Centers for Disease Control and Prevention (CDC) agencies within the U.S. Department of Health and Human Services released a report which estimated autism spectrum disorder (ASD) prevalence based on parental reporting using the National Survey of Children’s Health.   In the survey, the prevalence of parent-reported ASD among children was 2%, or 1 in 50, up from 1.2% in 2007.  According to the CDC, however, much of the increase in the prevalence estimates from 2007 to 2011-2012 was the result of diagnoses of children with previously unrecognized ASD.

Last year, the CDC released new in-depth research estimating that 1 in 88 children had been identified with ASD.  The CDC will release its next round of this kind of research in 2014.  While the new study is based on parent reporting, a different methodology than that used by CDC’s monitoring network, it has tremendous significance for our service systems.

“These statistics represent millions of families across the country that are looking for resources and answers to help their children.  But meanwhile, the across-the-board budget cuts in Washington are hampering the vital efforts of federal agencies like the CDC and the National Institutes of Health, which are working to find the underlying causes of autism, and could have real consequences in our society,” said Peter Berns, CEO of The Arc.

“And these are not the only threats – lifeline programs like Medicaid, Social Security, and Medicare are on the table for real cuts that may impact the ability of these families to get services in the near and distant future for their children, as well as hurting adults with ASD who depend on those programs today.  It is not enough to say we want a balanced approach to deficit reduction – we must stand together and say that we cannot simply cut our way out of this situation.  We need more revenue to pay for critical investments like prevention and treatment, as well as services and supports for people with autism,” added Berns.

Early identification and intervention can have a significant impact on a child’s ability to learn new skills.  CDC’s “Learn the Signs. Act Early.” health education campaign promotes awareness among parents, health professionals, and child care providers about healthy developmental milestones, the importance of tracking each child’s development, and acting early if there are concerns. CDC offers free online resources, including checklists of developmental milestones, at www.cdc.gov/ActEarly.

Autism NOW: The National Autism Resource and Information Center, a federally funded project of The Arc, is another resource for people with ASDs and their families.  The online center aims to help people searching the web separate fact from fiction when it comes to autism.  Learn more at www.autismnow.org.

The Arc Applauds Appointment of Disability Champion Tom Perez as U.S. Secretary of Labor

Washington, DC – The Arc, the largest civil rights organization for people with intellectual and developmental disabilities (I/DD), applauds President Obama’s nomination of Tom Perez, the current head of the U.S. Department of Justice’s Civil Rights Division, as the next U.S. Secretary of Labor.

“Tom Perez has been a champion for people with disabilities throughout his career, and we are pleased that he has been nominated for a post that plays a critical role in employment for people whom The Arc represents.  We are thrilled that he steps into this important position with a wide breadth of knowledge regarding people with I/DD, and we look forward to his confirmation and to working with him in his new role,” said Peter Berns, CEO of The Arc.

In 2012, The Arc and the five other disability organizations that host the annual Disability Policy Seminar in Washington, DC presented Perez with their prestigious Leadership in Disability Policy Award for his aggressive enforcement of the Americans with Disabilities Act’s “integration mandate” and the Olmstead decision.  Just since 2009, the U.S. Department of Justice (DOJ) has been involved in several cases that will result in major transformations of states’ delivery of long term services and supports to people with disabilities.  In each of these cases, people with disabilities were living in segregated settings or at risk of being institutionalized while they could be living in more integrated community settings.  Due to Perez’s tireless work, thousands of people with disabilities will be able to leave institutional settings or avoid ever having to enter an institution, and will be able to participate more fully in their communities.

“Tom Perez has set a high bar at the Department of Justice for the enforcement of the laws protecting the rights of people with disabilities to be a part of their community.  We appreciate his tremendous efforts and look forward to working with him at the Department of Labor to further the employment of people with disabilities,” said Berns.

Progress in Affordable Housing for People with Disabilities – The Arc Applauds New Grants in 13 States

Washington, DC – The Arc released the following statement in response to the U.S. Department of Housing and Urban Development’s (HUD) announcement of the FY 2012 awards for the new Section 811 Supportive Housing for Persons with Disabilities Project Rental Assistance (PRA) Demonstration. The new Section 811 PRA Demonstration is designed to assist state housing agencies to expand integrated supportive housing opportunities for people with the most significant and long term disabilities, and was the centerpiece of the Frank Melville Supportive Housing Investment Act of 2010. A total of 13 states will receive $98 million to produce 3,530 units of community-based supportive housing for people with disabilities.

“Like all Americans, individuals with intellectual and developmental disabilities deserve the opportunity to live independently in the community with their peers. Unfortunately, low-income people with disabilities face a severe shortage of accessible and affordable housing. The money being awarded by HUD will allow thousands of individuals to live in the community, where they belong. For many, this announcement is the difference between life in an institution and inclusion in their communities,” said Peter V. Berns, CEO of The Arc.

Section 811 is the only HUD program dedicated to producing affordable, accessible housing for non-elderly, very low-income people with significant disabilities. The Frank Melville Supportive Housing Investment Act of 2010 modernized Section 811 to make the program more efficient and effective. Today’s awards are the first ever under the new Section 811 PRA Demonstration model, which will create integrated housing linked with community-based services for low-income adults with significant disabilities.  States receiving awards are: California, Delaware, Georgia, Illinois, Louisiana, Maryland, Massachusetts, Minnesota, Montana, North Carolina, Pennsylvania, Texas, and Washington.

Love is in the Air – Media Profiles People with Disabilities in Marriage and Parenting

Washington, DC – As we approach Valentine’s Day, today two major media outlets released heartwarming profiles of people with intellectual and developmental disabilities (I/DD) achieving their dreams – falling in love, getting married, and being a parent.

Today, the Washington Post released a lengthy profile of Bill Ott and Shelley Belgard, a couple from Maryland who were married in September after a long courtship.  Bill and Shelley met as teenagers, dated, and re-connected later in life.  Bill has Down syndrome and Shelley has hydrocephalus.  But no disability could keep them apart, and today, Bill and Shelley are married, living independently with supports, working in the community, and enjoying their lives together.

“Bill’s and Shelley’s path to marriage is not unlike many others who fall in love, lose touch as life takes its turns, and reconnect later in life when the time is right.  They have a love that is as true as anyone else’s, and with support from family and the community, they are living their dream.  The reality is not everyone has access to all the support and resources that Shelley and Bill have had, but when people with disabilities are given the tools they need to succeed, look at what is possible – a life like yours and mine,” said Peter Berns, CEO of The Arc.

NPR also ran an interview this morning with Bonnie and Myra Brown, a mother and daughter from Lansdowne, Pennsylvania.  Bonnie is a single mother raising 15 year old Myra, and Bonnie has an intellectual disability.  Myra is grateful for her mother’s love and guidance, and the interview with them is so moving that the radio host is heard choking up.

“Raising a child is a wonderful experience that comes with challenges for any parent.  Bonnie and Myra’s touching story is proof that people with intellectual and developmental disabilities can be successful parents when provided proper supports, and they should have the same right to parent as others do,” said Berns.

Unfortunately, there is a dark history of discrimination toward individuals with I/DD in our nation and around the world.  This includes the denial of rights and opportunities to have relationships, get married and have their own children.  Earlier this year, The National Council on Disability released a very telling report on the rights of parents who have disabilities.  Four million parents—6 percent of American mothers and fathers—have a disability.  The rate at which children are taken from parents who have intellectual and developmental disabilities is between 40% and 80%.  This report uncovers the heartbreaking reality for too many families across the country – parents with disabilities are treated unjustly when it comes to their rights as parents, and far too many families are broken apart by outdated and discriminatory practices.

The Arc on the Front Lines of Defending Social Security

The Arc’s Peter Berns speaks out in Washington to protect Social Security from harmful cuts in budget negotiations. (at left is Senator Sheldon Whitehouse of Rhode Island)

The Arc’s Peter Berns speaks out in Washington to protect Social Security from harmful cuts in budget negotiations. (at left is Senator Sheldon Whitehouse of Rhode Island)

Many programs vital to people with intellectual and developmental disabilities (I/DD) have been at risk over the last few rounds of budget negotiations.  Right now, Social Security is in danger of cuts because of talk to change the benefit calculation.  This shift to what is called the “chained CPI” would have horrible consequences for people with I/DD, forcing them to make life and death choices.  The Arc’s CEO Peter Berns was invited to speak at a press conference in the U.S. Capitol today, organized by Senator Bernie Sanders of Vermont.  Berns was joined by representatives from other organizations whose constituencies would be impacted by this benefit cut, including AARP, NOW, the AFL-CIO, and Iraq and Afghanistan Veterans of America.

Good morning. I’m Peter Berns, the Chief Executive Officer for The Arc. We are the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We have over 175,000 members, and we serve more than 1 million people through our 700 state and local chapters nationwide.

Our nation’s Social Security system is a lifeline for over 56 million Americans including more than 10 million people who qualify because of a disability.

It’s a system that was built up over decades based on our shared commitment to each other. Changing the benefit calculation through the chained CPI isn’t just shaving a few dollars off here and there. We have a moral obligation to make sure that Social Security is there for all Americans in their time of need.

For people with disabilities, the monthly Social Security check can mean the difference between a home in the community, or life on the streets or in an institution.

It can mean the difference between food on the table, or hunger.

It can mean the difference between access to essential medicines and health care, or tempting illness or death.

Many beneficiaries with disabilities rely on Social Security for most or all of their income. With benefits only about $1,100 a month, every cent counts, and over the years the impact of the chained CPI would be real and painful.

Cuts from the chained CPI could also lead to terrible life and death choices for over 8 million very-low income seniors and people with disabilities who rely on Supplemental Security Income. SSI benefits are just over $500 a month.

Sen. Bernie Sanders of Vermont, who organized the press conference, issued a strong defense of Social Security.

Sen. Bernie Sanders of Vermont, who organized the press conference, issued a strong defense of Social Security.

Think about that – $500 a month is just pocket change for many affluent Americans.

It’s a monthly payment for a high-end car, or a plane ticket for a vacation.

But it’s all that many SSI beneficiaries have to exist on, month after month. The chained CPI would cut SSI benefits not once, but twice: first, before the person ever applies for benefits, by lowering the initial payment level, and second, through lower annual cost-of-living adjustments.

With SSI benefits already extremely low, it’s hard to imagine how beneficiaries would get by after cuts from the chained CPI.

In closing, thank you to Senator Sanders, Senator Whitehouse, and Senator Merkley and to our colleagues for bringing us together today to highlight how the chained CPI would hurt working Americans, seniors, veterans, women, and people with disabilities. We stand united against this harmful benefit cut.