Happy 40th Birthday Section 504!

San Francisco Sit-InIn 1973, Congress passed the very first civil rights protection for people with disabilities. Section 504 of the Rehabilitation Act prohibits discrimination based on disability by any entity that receives federal funds. Senator Hubert Humphrey was a champion of civil rights for people with disabilities. He said, “[T]he time has come to firmly establish the right of disabled Americans to dignity and self-respect as equal and contributing members of society and to end the virtual isolation of millions of children and adults.”

As with any law, regulations needed to be written to define who a person with a disability was and what constituted discrimination. There was much controversy surrounding Section 504 and getting the regulations published was a battle that lasted for several years. Disability advocates had to file a lawsuit to get the government to finalize the regulations. Unfortunately, the court did not set a date by which the regulations had to be published. The disability community grew more frustrated. A coalition was formed to lead an effort to get regulations out. The coalition was called the American Coalition of Citizens with Disabilities.

The federal government set up a task force to study the regulations, but failed to include any individuals with disabilities among its members. The disability community feared that the rules were being watered down significantly. Rather than wait for weak regulations to come out and then submit comments, the community borrowed from the African American Civil Rights movement and organized a sit-in at the San Francisco office of what was then the Department of Health, Education and Welfare (HEW). The San Francisco sit-in lasted for 28 days! A refrain from those days was, “We can’t even get on the back of the bus.”

A Congressional hearing was held at the San Francisco HEW office where leaders of the disability rights movement (including Judy Heumann and Ed Roberts) gave compelling testimony about the discrimination each of them faced on a daily basis. A smaller group of disability rights advocates traveled to Washington and demonstrated in front of the HEW Secretary’s home and the church where the President was worshiping. Finally, on April 28, 1977 the Secretary of HEW signed the regulations.

Today, every federal agency has Section 504 regulations concerning the programs that receive funds from that particular agency. And today, discrimination is prohibited on the basis of disability in education, employment, state programs, health care facilities, airports, public libraries, public parks, local government buildings and programs; the list goes on and on.

The Arc Maryland Responds to Governor’s Executive Order to Establish Commission

Governor O’Malley Forms New Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities

ANNAPOLIS, Md.The Arc Maryland responds to Governor O’Malley’s Executive Order to establish the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. The Executive Order was created as a response to the tragic death of Frederick County resident Ethan Saylor, who had Down syndrome, in an effort to improve the training of law enforcement, paramedics and other first responders to better respond to people with intellectual and/or developmental disabilities.

In a press statement issued on February 21 (http://arcblog.wpengine.com/2013/02/21/the-arc-responds-to-the…), The Arc Maryland responded to the tragic death of Robert Ethan Saylor: “Sadly, this tragedy could have been prevented…with proper training these officers would have realized there was a better way to work with Robert, as opposed to simply using force – an extreme and unnecessary reaction. This is a moment for us not only to mourn, but we must also learn from this tragedy and encourage proper training in our police departments,” said Kate Fialkowski, Executive Director, The Arc Maryland.

Individuals with intellectual and/or developmental disabilities (includes children, youth and adults with disabilities such as autism, cerebral palsy and Down syndrome) represent 3% of the population living in our communities as valuable contributing citizens. Individuals with intellectual and/or developmental disabilities (I/DD) are disproportionately victimized and disproportionately suspected of criminal activity—7 times more likely to come in contact with law enforcement than the general population. Individuals with I/DD often have co-occurring medical conditions such as neurological, cardiac, or respiratory conditions that make them more vulnerable in stress situations. The use of prone restraints – which is associated with increased risk of asphyxia and aspiration – can result in fatality. (National Review of Restraint Related Deaths of Children and Adults with Disabilities: The Lethal Consequences of Restraint, 2011).

Carol Fried, President of The Arc Maryland said: “It’s our collective responsibility as a community to understand the unique gifts of our fellow community members, but also to ensure that our protective service systems are savvy in ensuring safe treatment of a vulnerable population.”

A comprehensive approach is necessary and The Arc Maryland applauds Governor O’Malley for establishing this Commission. It is critical that our state develops policies and practices for law enforcement and first responders, that there should be a coordinated and comprehensive strategy for response, and all first responders should have appropriate training to effectively respond to individuals with I/DD in a variety of public safety situations.

In its continuing efforts to build awareness and improve community inclusion, The Arc Maryland is scheduled to conduct an introductory training entitled “Law Enforcement Response to Developmental Disabilities” at the Governor’s Fall Criminal Justice Conference on October 10, 2013. In an “Ask Me” format, individuals with developmental disabilities will lead this training.  “The Arc has a long history of criminal justice and first responder training on a national level. We’re happy to contribute our extensive experience in any way that can benefit the state and individuals with intellectual and developmental disabilities and their families,” said Ms. Fialkowski.

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.

Some Children with I/DD at Greater Risk from Flu

Young woman with the flu

Photo via nataliejohnson (Flickr)

The Centers for Disease Control and Prevention (CDC) just published a report on the results of an on-line study they did during the 2011-2012 influenza season regarding vaccination rates for children with neurologic and neurodevelopmental conditions.  Shockingly, the report indicated that only HALF of children surveyed were vaccinated or had an appointment to be vaccinated and out of those children who indicated they had an intellectual disability it was only slightly better at 52%.  Numbers like this are alarming due to when you consider the 2009 flu outbreak in which 336 children died. Of those, 146 were children with neurologic or neurodevelopmental conditions (76% indicating they had an intellectual disability).

The majority of families rely and trust their physician to provide them with information, expertise and advice on what is best for their child to keep them healthy. However, the study also found that even after this outbreak occurred many physicians still do not rate children with an intellectual disability as being at a high risk and needing the vaccination.

According to the CDC bulletin a child with an intellectual or developmental disability that requires special needs is at a higher risk than others due to the fact that they are more susceptible to developing complications and infections from the flu virus. These complications can include pneumonia, bronchitis, and can also increase the effects of already current chronic health problems. These complications can lead to hospitalization and in severe cases death.

While every parent has the right to choose whether to get their child vaccinated or not, studies like this will help to increase awareness of prevention and knowledge of parents and physicians to help them to make more informed decisions.

As fall rolls in and the flu season quickly approaches you can visit the HealthMap Vaccine Finder if you need help finding a location in your area to get vaccinated.

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.

Report Highlights Severe Abuse of People with Disabilities Abroad

The International Task Force of the Consortium for Citizens with Disabilities (CCD) today released a report that highlights examples of the severe abuse and neglect of individuals with disabilities around the World.  The report, Neglected and Abused Abroad: A Look at the Severe Mistreatment of Individuals with Disabilities Around the World and How the U.S. Can Help, highlights just a few examples of the horrible treatment, abuse, and discrimination faced by individuals with a variety of disabilities in other countries. 

Some examples of abuse include:

  • In Ghana, people with intellectual and mental health disabilities suffer severe abuse in psychiatric institutions and “healing centers.”  Thousands of people are forced to live in these institutions, often against their will and with little possibility of challenging their confinement;
  • In Kenya, a 10-year old girl who is deaf was raped but faces barriers in the justice system because of her disability;
  • In Mexico, children with intellectual disabilities were  abandoned at a private facility without any documentation on their diagnosis or even their names;
  • Children in Paraguay were found in cells with walls smeared with excrement and reeking of urine; and
  • In Russia, people with physical disabilities are prisoners in their own homes because of the widespread physical inaccessibility of Russian cities.

“Our country has an obligation to share our knowledge of how to ensure  children and adults with disabilities live as full citizens, with dignity and independence,” said CCD Chair, Katy Neas of Easter Seals.  “It is imperative that the United States show our leadership by ratifying the Convention on the Rights of Persons with Disabilities this fall.”

The full report is available at: http://www.c-c-d.org/fichiers/CCD_Inter_TF-Neglected_and_Abused_Abroad.pdf

The CCD International Task Force calls on the United States Senate to ratify the Convention on the Rights of Persons with Disabilities – the CRPD.  Through ratification of this important treaty, the United States will be in a much better position under international law to influence, train, assist, and if necessary use diplomatic pressure to work towards the equal rights and treatment of individuals with disabilities across the world – rights which have existed in the United States for years.

CCD is a coalition of over 100 national consumer, advocacy, provider and professional organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.  For years, the coalition and its members have been calling on the U.S. to ratify the CRPD protecting the rights and dignity of persons with disabilities.  CCD calls on the entire U.S. Senate to quickly provide its advice and consent to the treaty and restore the United States to a global leadership position on disability and human rights.