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://blog.thearc.org/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.

Brazilian Educators visit The Arc Baton Rouge Children’s Services

By Barry Meyer, Executive Director of The Arc Baton RougeThe Arc Baton Rouge and Brazil exchange participants

Earlier this month, we were thrilled to welcome five visiting educators from Brazil to The Arc Baton Rouge Children’s Services. The visitors came to Louisiana through a program of the U.S. Department of State. The guests joined us from five states across Brazil and included four Secretaries of their state’s Department of Education and one Deputy Secretary.

We were selected because our programs help create inclusive preschool, child care and educational opportunities for children with disabilities. One of the State Department’s specific objectives was to “Expose participants to the ways in which private sector entities are engaging with public sector partners in support of educational programs.”

Between Heidi Shapiro, Children’s Services Social Worker, two interpreters, and me, we presented four programs of The Arc Baton Rouge Children’s Services:

  • Early Childhood Inclusive Program
  • The Preschool and Child Care Training and Technical Assistance Project
  • Parent Supports and
  • School Age Supports

Using a multi-platform approach including PowerPoint presentations, multilingual handouts, informal discussion, and a Q and A session, the guests learned how The Arc Children’s Services staff works with public school administrators, principals, and teachers to help them restructure programs. Additionally, they learned how our staff serves as mentors and coaches to support teachers to include children with disabilities in regular classes. They also saw how a similar training and on-going mentor/coaching approach worked in preschool and child care settings.

In the end, the participants understood that training parents and care givers to be their child’s strongest advocate was critical to ensuring success in transitioning to public school systems. They also left with the knowledge that an organization that is not a direct stakeholder, such as The Arc, can provide that training to individual parents, combine it with mentor/coaching of  teachers and create opportunities for individual children as well as real systems change.

I feel that The Arc Baton Rouge was very fortunate to have this opportunity to demonstrate to our Brazilian guests how we at the grass roots advocacy and service level incorporate our core values in a very real world way!

The five education officials concluded their visit with a brief tour and overview of The Arc Early Head Start program. The visiting Brazilian educators were:

 

Ms. Hortencia Maria Pereira ARAUJO

Deputy State Secretary of Education, State of Sergipe

 

Ms. Maria Izolda Cela De Arruda COELHO

Secretary of Education, State of Ceará

 

Ms. Maria Nilene Badeca Da COSTA

Secretary of Education, State of Mato Grosso do Sul

 

Mr. Claudio Cavalcanti RIBEIRO

Secretary of Education, State of Pará

 

Dr. Herman Jacobus Cornelis VOORWALD

Secretary of Education, São Paulo State

Talking About Inclusive Education

Inclusive Class podcastAmy Goodman, Co-Director of the Autism NOW National Autism Resource and Information Center, will join The Inclusive Class Podcast on Friday, May 17 at 9:00 a.m. EST for a 30-minute chat about inclusive education for students with autism and other developmental disabilities.

The Inclusive Class is hosted by Nicole Eredics, founder of the online resource, The Inclusive Class and Terri Mauro, author of 50 Ways to Support Your Child’s Special Education and The Everything Parent’s Guide to Sensory Integration Disorder.  Nicole is an elementary educator who has spent over 15 years teaching in an inclusive classroom setting creating and discovering solutions for integrating students with special needs in the classroom.  Terri Mauro is one of the most recognized experts on special education and special needs parenting on the Internet.

Tune in for Amy’s unique perspective as a person who identifies as being on the autism spectrum on Blog Talk Radio on May 17. Also, you can access the podcast after it airs on Blog Talk Radio, on iTunes and on The Inclusive Class website.

Autism NOW is a project of The Arc funded in part by the Administration on Intellectual and Developmental Disabilities and was created to provide quality, vetted information and resources for individuals on the autism spectrum and with other developmental disabilities.

Our Friend Mikayla – Our Journey to Bring this Book to Schools across Pennsylvania

By Kim Resh, mother to Mikayla Resh

Our Friend Mikayla

It is a certainly a most amazing accomplishment that Our Friend Mikayla, the book inspired by my daughter and written and illustrated by her third grade classmates, is now in every public elementary school in Pennsylvania. Still, I’m really not entirely surprised. I believe in kids. I always have. And if at any time I had doubts, kids have always renewed my faith.

No matter how certain we were of our decision to include Mikayla in a regular education classroom, we were afraid of how the other kids would react and respond to her. But our fears were unfounded. From the very first day, the children wanted to push her in her wheelchair, sit next to her at lunch, even turn off her feeding pump when it alarmed. So when they grew old enough to write their story, I knew theirs was a message worth sharing.

I’ve always said that even if the book was never published, the time we all spent working together was an incredible experience. Our honest discussions were priceless and are clearly portrayed through the kids’ writing. When I edited their words into one story, I was surprised at how easily the book wrote itself. And to be honest, almost everything else has fallen into place with equal ease.

I wrote one grant for publishing. That was approved, and another organization asked to help. Individuals and families privately donated copies of Our Friend Mikayla to their own school libraries. It was obviously more difficult to find donors for a statewide distribution program so I am grateful to Walmart and Air Products for their grants, which respectively afforded the printing and mailing of books across the state.

Still, am I surprised every public elementary school finally has a copy? No, humbled and most appreciative, but not surprised. It is all about the kids. They are smart. They understand more than adults at times. Young children are innocent and pure, capable of unconditional friendship and compassion. If learned young, these lessons last forever. By including our students with and without disabilities in the same classrooms, they will teach other life’s most important lessons. Our Friend Mikayla is not just a book, it is a wonderful example of what is possible in every school across the state, country, and beyond.

3 State Chapters Making a Difference – Let’s hear it for Alabama, Illinois and Virginia!

Being part of the community and living as independently as possible are among the most important values and goals shared by people with disabilities, their families, and advocates.  Chapters of The Arc across the country are on the front lines of pushing for inclusion and advocating for these important rights in their communities.  And we want to share the progress that is being made in Alabama, Illinois and Virginia.

Alabama

The Arc of Alabama’s tireless work led to a huge victory for its state at the end of 2011. Working with other statewide I/DD organizations, the W.D. Partlow Developmental Center in Tuscaloosa, the home of thousands of individuals with I/DD over the years, officially closed on December 28. With the closure of Partlow, Alabama becomes the first state in the southeast and one of only 13 states in the country to no longer operate large public institutions.

“We are delighted about the closure of Partlow. We share the credit for this great accomplishment with People First of Alabama and others, but I can say it would not have happened without The Arc,” said Tom Holmes, Executive Director of The Arc of Alabama.

December’s closing meant the last 150 residents of Partlow were moved to community homes throughout the state.  Partlow, which opened in 1923, was costing approximately $42 million a year to operate.

“Most of the families come back and say that they did not realize that their family members would be so much happier living in the community. That is just wonderful for us to hear,” said Tom Holmes.

To learn more about the closure of Partlow read about it in The Tuscaloosa News.

Illinois

Governor Pat Quinn’s announcement of his plan to rebalance the state’s approach to providing long term services and supports for individuals with I/DD means change for thousands of individuals in Illinois. The Governor’s Active Community Care Transition (ACCT) plan will increase the number of individuals with I/DD living in community settings across the state.

“This historic change in public policy embraces freedom, independence and choice. Our current system is antiquated. Only two states warehouse more people in institutions than Illinois and 13 states have closed all public institutions. More than 30 national studies show that community living provides the most safe and effective care. Yet Illinois ranks last in the nation in the number of available community settings,” said Tony Paulauski, Executive Director of The Arc of Illinois.

The Arc of Illinois has been an integral partner in moving the state toward a community based system. Over the last few months the Governor’s office has been in constant contact with The Arc of Illinois’ Executive Director Tony Paulauski and other members of The Arc.

During the first phase of the plan, residents from the Jacksonville Developmental Center (JDC) in Jacksonville, IL and from the Tinley Park Mental Health Center (MHC) in Tinley Park, IL will be transitioned to community settings and the facilities will be closed. Read more about the first of these closures.

Also, check out The Arc of Illinois website for updates on the transition.

Virginia

Last month, the Department of Justice reached a settlement agreement with Virginia requiring the state to provide community-based services through Medicaid waivers and family supports for more than 5,000 individuals with I/DD. The agreement means that Virginia will no longer be heavily reliant on large, expensive, public institutions. The state will be able to focus on individualized and cost effective community based services that allow individuals to live independent lives and participate in the community.

“The Arc of Virginia applauds Governor McDonnell and his administration for taking this important step in the right direction.  We salute DOJ’s leadership on making this a successful effort that will result in thousands of people with intellectual and developmental disabilities being afforded the opportunity to live “A Life Like Yours” in the community.   This landmark agreement will be long remembered as a historic moment in the ID/DD civil rights movement,” said Jamie Liban, Executive Director of The Arc of Virginia.

The state must create 4,170 new waiver slots for people currently residing in the state’s five Training Centers (about 1,000 individuals), people with intellectual disabilities who are on the state’s “urgent” waiting list for waiver services, people with ID who are under 22 and live in facilities other than the training centers, people with DD who are on the state’s waiting list for waiver services and for people with DD who are under 22 and live in facilities other than the training centers. The state also will create an individual and family support program for 1,000 individuals with I/DD most at risk of institutional placement.

Detailed plans for helping individuals transition from institutional settings to community settings and establishing a quality and risk management system are outlined in the agreement. An independent reviewer will oversee the settlement agreement for the court which retains jurisdiction.

View The Arc’s full statement in response to this agreement.

Many People with Developmental Disabilities Feel Trapped in Nursing Homes

Imagine feeling like you’re imprisoned just because you have an intellectual or developmental disability (I/DD).

That’s a reality for more than 4,500 people with I/DD in Texas “trapped” in nursing homes providing inadequate care, according to The Arc of Texas and the Coalition of Texans with Disabilities.  The two advocacy groups joined to file a class-action lawsuit against Texas earlier this week in San Antonio along with six individuals with I/DD.

The suit focuses on the approximately 4,500 people with disabilities living in nursing homes in Texas; advocates say that thousands more are at risk of the same fate.

“Many are denied the opportunity to live where they choose,” said Mike Bright, executive director of The Arc of Texas. “In other words, they have been imprisoned simply for having a disability.”

Texas ranks 49th among 50 states in providing community-based services to people with developmental disabilities according to a 2010 report by the Texas Council for Developmental Disabilities.

In The Arc’s fight for inclusion, we’ve argued that most people receive better care in a community-based facility or in their own homes.  By shining a light on this issue, The Arc of Texas has proven our point while improving the lives of thousands.