The Arc Baton Rouge Flood Impact August 2016

The Arc BR flood 1
Barry A. Meyer, Executive Director

The catastrophic flooding that inundated the greater Baton Rouge and surrounding areas has had a devastating impact on the children, adults and families we serve, as well as our staff. We are still trying to locate some of them.

Fortunately, we located all of the individuals that we directly support who were forced to evacuate from their own homes or apartments.  All of them have been moved out of shelters and into shared housing with others who were not flooded. Many of those who live with their families were also forced to evacuate. Some are with other family members that were spared.  Some are in area hotels. Others were able to return home once the water subsided. Unfortunately, there are areas that are still flooded. Many staff members have also suffered tremendous losses.

We have yet to locate 2 individuals with I/DD and 11 Direct Support Professionals. Of those we have contacted, 60 were forced to evacuate and lost their homes to the flood.  Most also lost their vehicles.

Three of our program locations totaling almost 41,000 sq. ft. were flooded;

  • Children’s Services Center, the offices and team meeting place for Early Intervention Special Instructors, OTs, PTs and Speech Therapists.
  • Metro Enterprises – Prescott Road 1 of 2 locations where crews and enclaves meet before heading to their work site, for others to meet for community volunteer activities, and where our day habilitation services are provided.
  • The Respite Care Center for children and adults who are in need of short term residence in a home environment, to relieve family from continual care or in an emergency including instances of abuse or neglect.

The Arc BR flood 3The Arc BR flood 4These buildings are located in areas that were mapped as being “safe” from flooding. Like thousands of individuals and businesses in “safe” areas, we did not have flood insurance on these buildings. The maximum water damage coverage we do have is $25,000 per event for ALL property. Repairs and recovery of the Respite Center is a priority because it will provide temporary housing not only for those people we support who are guest in others homes, but for additional folks with I/DD who are still in shelters. We received one estimate for repairs for the Respite Center – the smallest of the three flooded facilities – of $167,000.

The Arc BR flood 2We also lost four mini-vans, a full-size automobile used for community inclusion outings, a box truck used to haul paper for shredding contracts and other recyclable goods, and a fork lift.

We are overwhelmed by the kind words and encouragement from our friends and extended family of The Arc. Cliff Doescher, the Executive Director of The Arc Greater New Orleans, contacted us almost immediately, offering staff volunteers to help with cleanup and repair efforts. A group of ten will be heading here this Friday and a second group of twelve will be in Baton Rouge next Tuesday.

In a traumatic event of this scale, it is important to reestablish “normal” routines as quickly as possible – for the sake of the children, the adults and their families.  As soon as the waters receded, EarlySteps staff resumed seeing children in their homes or other natural settings.  Metro staff worked quickly to re-arrange the space at Dallas Drive to make room and accommodate employees and day services clients from the Prescott Road facility. Teamwork and flexibility have minimized our down-time and expedited resumption of services when and wherever possible.

For those who have “lost everything” returning to normal is a long-term goal. A place to sleep is a more urgent priority.  I had a chance to visit with many of the staff and individuals we support. I asked, “What would be one thing we can do to help you right now?” Tina thought for only a few seconds and replied, “A mattress, so I could have some place to sleep.”

TIM lived with supports in the same home where he grew up. His sister had remodeled it for him recently, updated with bright new furnishings and total accessibility for his wheelchair. By Friday evening streets in Tim’s neighborhood were flooded, and he and Christy, his day worker, could not get out. With the help of the National Guard they were evacuated by boat to a nearby church shelter on Saturday. As the water continued to rise, they were moved to a high school shelter, where they didn’t stay dry for very long. Christy had to push the wheelchair through the water up to a t-building which was on higher ground. She stood in the water for several hours while holding Tim’s wheelchair on the ramp above the water. When the next boat came they were brought to safety at Central Middle School, where they would finally be dry for the night.

The middle school was a nice facility. There were 2 gyms which allowed shelter volunteers to better accommodate elderly folks and those with disabilities in separate areas; however, all the shelter’s cots were already occupied by other evacuees. Tim got very little sleep sitting upright in his wheelchair. Sunday morning he was moved to a cot, and it goes without saying, he fell fast asleep.

In such a chaotic situation, tracking people down between shelters was no easy task; many people were without cell phone service, and land lines and other utilities were failing by the minute. On top of that… Sunday morning brought the workers’ 4th shift change that had NOT happened. Tim’s Friday daytime DSW was still by his side, caring for him, and unable to get back to be with her own family. They had been completely surrounded by floodwaters with no way in or out.

Amy, Supported Living Program Director, had not given up on finding the two and finally tracked them down at Central Middle School. By this time the water had receded and vehicles were able to drive closer to the school. Amy contacted Barry, Executive Director, to go with her to pick them up. They decided to take Barry’s Jeep because it was several inches higher from the ground than Amy’s van.

Words could not describe the excitement on their faces when Tim and Christy spotted Amy and Barry walking into the gym. But after spending time together and becoming new friends, the shelter volunteers hated to see them go. So what, right? They grabbed the garbage bag with Tim’s personal items, thanked the volunteers, said their good-byes and headed for the door.

Unfortunately The Arc’s Respite Care Center had been flooded, so THE go-to shelter in an emergency or crisis situation was not an option. Right away Amy thought of Lynette, who lives in her own place with full supports. Some might say Lynette is non-verbal, but there was no doubt of her welcoming reply when asked if she would be willing to share her home with Tim, indefinitely! She even volunteered her own bed, equipped with side rail and certain to be the most important amenity to Tim. Even in the comfort of his own home, he rarely slept all night. Sunday. . . Tim slept all night.

BETH AND DONNA each lived on their own in the same apartment complex. They were already friends and occasionally went on outings together. On Saturday when the waters rose from the streets and then into the parking areas of the complex, it seeped into Donna’s home first. No worries… her DSW checked in with Beth’s worker who agreed they should head there. It didn’t take long for the water to rise into Beth’s apartment. They called every single emergency number they could find, and learned that first responders and volunteers were already evacuating the complex, building by building. Beth’s apartment was close to the end of the property, and they waited outside, all night, for their turn to be rescued.

Sunday morning brought with it a rescue boat. Unfortunately one could not choose where they wished to be dropped off. Unloading areas were at random places of highest ground, along a street or other high pavement. Now safe on dry land, the ladies were stranded.

Arc BR Supervisor, Natalie, was relieved to get their call for help. In the past she had worked in a neighborhood near Beth and Donna’s apartment complex, and knew her way around the back roads. She found a route that was not under water, and was able to drive right up to where they stood at the side of the road. She drove them to Mary’s house – another friend in supported Living – who had not been flooded.

Fortunately Mary has a 3rd bedroom in her Habitat for Humanity home that she shares with a housemate. She welcomed Beth and Donna as temporary guests; they share a bedroom, and when possible, the 4 of them share workers.

DURING NORMAL TIMES there are more than enough hotel rooms in and around Baton Rouge to accommodate tourists, business travelers, sports enthusiasts and concert-goers. Several employees of The Arc’s Metro Enterprises Employment Program realized the magnitude of flooding and number of people displaced when they began their search for hotel rooms. Saturday night Byron’s mother finally found a vacant room for 2 nights in Eunice, LA; a small town almost 80 miles away. For 2 days they drove from there into Baton Rouge to begin the cleanup phase of their flood-damaged home, and then back again at night.

Their search for another vacant room took them 110 miles away from home to Alexandria, which is considered central Louisiana. Hopefully Byron and his family have found a place to stay that’s closer to home. And much like tens of thousands of other folks, they continue to work together – gutting and cleaning what’s left of their homes – and determined to rebuild and recover.


Catching Some Waves With The Arc of the St. Johns

Andy SurfingInnovations in programming at The Arc of the St. Johns in St. Augustine, Florida, are most often driven by specific needs and interests identified by the individuals they serve. That, of course, calls for listening, understanding, and the flexibility to step outside the norm. The individuals there enjoy an active learning curriculum, with rotating classes in computer proficiency, culinary and health, structured physical education, arts and crafts, and Adult Basic Education in cooperation with the community college in St. Augustine. Children with special needs have the Therapeutic Learning Center, and young adult age 18 to 22 attend the St. Johns Community Campus, both charter schools.

Andy, a client of the chapter, has always been a curious and adventurous soul. The twenty-six year-old sees every class as a fresh and productive opportunity to experience and achieve very measurable objectives, most for the very first time. These therapeutic exercises are helping to train his hands and arms to stir a pot full of beans in Culinary Class, and to operate his own Facebook page in computer class, aided by an ocular directed mouse.

St. Augustine is an active coastal community in Northeast Florida, and The Arc of the St. Johns has seen a void as many men, women and children with intellectual and developmental disabilities (I/DD) were missing the opportunity to enjoy the ocean and connect to a caring and sharing community of avid surfers. In response to the obvious need, and the urgings of Andy and his friends, The Arc created Surf Quest, a free monthly event with trained and enthusiastic volunteers who introduce adaptive aquatic recreation using specialized surfboards and flotation devices for anyone with a disability.  The Surf Quest season opened in March 2015 and will culminate with the Black Ties and Board Shorts Awards Banquet in September.

Surf PoseAndy truly captured the hearts and attention of the entire crew of trained and experienced volunteer coaches, virtually all of whom had little or no experience or interaction with individuals with I/DD. “Andy’s Crew” found the way to get Andy into the surf and on to a surfboard for a half-dozen rides. Jordan is his ride-along, and said, “Andy’s courage and effusive enthusiasm touched all of us, and we feel the same way about every one of these guys. We’ll be here for every event.

As for Andy, he has gone back to the computer to edit his video, adding a Beach Boys soundtrack. He has also created his shopping list for new wardrobe essentials for the next Surf Quest event: Some cool Ray Ban sunglasses, a pair of wild flower-print board shorts with a matching tank top, and a big, big, fluffy towel.

Find Andy’s action video on Facebook: Surf Quest – The Arc of the St. Johns. And, visit The Arc of the St. Johns website – Primary contact is Lynne Funcheon –

Building Vocational Success at The Arc of Carroll County

April is Autism Acceptance Month, and in honor of the launch of The Arc’s new initiative TalentScout, we at The Arc of Carroll County wanted to highlight some of the programs we are implementing to improve the lives of people with intellectual and developmental disabilities (I/DD) in the workforce.


Preparing for Success

The Arc of Carroll CountyFor the past 16 years, The Arc of Carroll County has had several educational partnerships to provide support to high school students and students in the Post-Secondary Program. One of these is VOICE, which teaches how to work with others, understanding the role of a job coach, and employer expectations. Another, TCP, focuses on the school-to-work transition and consists of locating job leads, filling out applications, interviewing, and being independent on the job.

Over the summer, we offer the Summer Youth Employment program for eligible high school and post-secondary participants. Through the program, participants have the opportunity to work in community businesses over the summer with the support of a job coach. This is paid employment, and plans are person-centered to identify unique supports for each person served.

A service we offer specifically for adults on the spectrum is Job Hunters. Coursework covers developing job skills, cover letter and resume writing, dressing for success, and other abilities. While the class itself is 10 weeks, it doesn’t end there! After the course is done, we continue to work with you until you become successfully employed. Last year, we successfully helped a student named Conner develop his skills and secure a job at the Westminster Home Goods for the holiday season. Now, Conner has made huge strides (all the way across the world!) and is residing in Japan looking for work teaching English to Japanese students.


Continued Support

The services don’t stop once someone has found employment. If specialized skills are required, we provide customized training to meet individualized employer needs. Program Coordinators and Employment specialists continue to work with individuals to liaise between the employee and employer to optimize vocational success.

Our Vocational Program, which follows a Place-Train-Maintain model, provides support, instruction, training, and supervision if necessary to maximize independence in the workplace. Some of the ways we do this are through job sampling, shadowing, and enclaves. One of the most unique parts of this program is Supported Enterprise, which assists individuals who are interested in starting their own small business through developing business plans and identifying funding sources. Our hope is that these participants may one day end up at Entrepreneur Alley during The Arc’s National Convention.

We believe that everyone has a right to meaningful and gainful employment, and that community services through The Arc’s chapters are a paramount tool in achieving this.

When We Move Forward Together, Anything Can Happen

This is a guest blog post by Mardra Sikora.

A few years ago, my son and I sat backstage during the Broadway Across America national tour performance of Mary Poppins. The cast sang, “Anything Can Happen, if You Let it,” and danced across the stage exuberantly pursuing their point. I believed them, because Marcus would soon be on stage singing right alongside them. This was in 2011 and the opportunity came from an auctioned event. Since then, his ambition to write his own musical and perform on stage has continued to grow. In fact after telling one actor at a community theater that he wanted to play the leading role, that actor reminded Marcus of the quote, “The greatest of journeys starts with a single step.”

The Next Step

MarcusMarcus keeps taking steps. His latest endeavors have netted a short play which is being produced this month at a local public high school. The show is called “Cassie Through the Closet Door.” The role of Cassie was inspired by an actress who Marcus worked with while participating in a project called the Art of Imagination. A program developed by our local chapter of The Arc, the Ollie Webb Center. Marcus has taken beginning acting classes through this program and hopes to move on to advance acting and then classes within the community next. These classes teach craft and understanding theater, but his innate talent is as a storyteller. Coming up next is the release of his children’s book entitled Black Day: The monster rock band, with a read along animated short to follow on DVD this fall.

Dreams Take a Village

There are still some who can’t believe what Marcus can achieve, but frankly Marcus doesn’t care what they think. That is perhaps one key to his continued ambition and potential for success. But it’s more than that, it’s also a community, a team effort. Ask any Olympian if they did it alone. There’s a reason award acceptance speeches are so long, the list of “Thank You’s” include many supporters within their community. Many people have to come together to teach, support, encourage, and enable anyone to reach their dreams.

Menschen cardMarcus also has some great role models breaking the social barriers. Connor Long, is one example of a young adult self-advocate who is following his acting aspirations. He’s already received accolades and awards for his role in the live action short Menschen. Which The Arc is sponsoring shows in cities across the country. The most recent list is at the end of this review, check back for updates. (Be sure to talk to your local arc to bring the show to your town.) Connor is busy with local theater at events and is also in production of his next film project, Learning to Drive, another example of a writer-director with a personal story to tell.

These two young men are just the tip of the iceberg, there are so many self-advocates taking steps to achieve their dreams. With their actions they are teaching communities, and because our communities are growing more inclusive, they continue to move forward. Let us all keep moving forward together, sharing, teaching, and learning that together, “Anything Can Happen, if You Let it!”

Bio: Mardra Sikora believes in the power of words and uses both fiction and non-fiction to advocate for and with her adult son Marcus. You can find her and Marcus on the blog Grown Ups and Downs, Facebook and Twitter as well as on various blog networks including The Huffington Post.

“Unreal” – My Trip To Washington for the President’s State of the Union Address

Senator Bob Casey and Sara Wolff

Senator Bob Casey and Sara Wolff

An interview with Sara Wolff, board member of National Down Syndrome Society, Board Member of The Arc of Pennsylvania, and her local chapter, The Arc Northeastern Pennsylvania as their Secretary.

Sara Wolff, 31, is a leading advocate for the Achieving a Better Life Experience (ABLE) Act for 8 years and continuing speaking and advocating for people with intellectual and developmental disabilities (I/DD), Down syndrome and other disabilities. Sara spoke to The Arc’s staff by phone on her way back home to Pennsylvania after attending the President’s State of the Union address as a guest of her U.S. Senator, Bob Casey. Members of Congress are given only one ticket for a guest at the annual speech before Congress. Sara and Senator Casey worked together on the ABLE Act, which President Obama signed into law in December of 2014.

What did you do before attending the speech?

I had dinner with Senator Casey and his wife, we had a great time. We also did some television interviews – it was awesome. We did four interviews together and we talked about the ABLE Act and many other issues.

What did you think about the speech?

I was very interested in many of President Obama’s points – I liked what he said about education and the middle class.

What did you think about being in the chamber?

Unreal. I felt like I was right there, with the President. Where I was seated he was right in the center. What an experience that I will never forget.

How was your seat?

It was crowded and I sat with a lot of people. I met a lot of people and I had a good time. I did have a good view of the President speaking.

What did you do after the speech?

I just hung out with my sister and Senator Casey’s staff. Went back to his office for a little while. It was a really cool night. I’m looking forward to getting home and doing more with the National Down Syndrome Society, The Arc of Northeastern Pennsylvania, and continuing to working at O’Malley & Langan Law Office in Scranton.

60th Anniversary Marks Milestone for The Arc of New Mexico

How Diversity is Strength at The Arc of New Mexico

There were many reasons to celebrate at The Arc of New Mexico State Annual Conference in June. Balloons and a bedecked cake displaying “60 years” were visible reminders of how far they’ve come.

Randy Costales, Executive Director of The Arc of New Mexico, says that in a state with a variety of cultures, languages, and backgrounds, it can be difficult to meet the needs of each community. Although New Mexico has only one local chapter The Arc of New Mexico has established Statewide Advocacy Network that includes the local chapter, a southern office and several home offices throughout the state. Over time he has found that opening several home offices throughout the state helps cut costs and provide better services.

“We have to be able to respond to the needs of all the citizens of New Mexico that have I/DD regardless of their age, ethnicity, or background,” said Costales.

The Southern New Mexico office was established 15 years ago to provide services to Dona Ana County, one of the poorest counties in New Mexico. A majority of the population is Hispanic and all staff are bilingual. A key to the success of this office is having employees from the area who can understand the needs of that region. Other offices have been established in Santa Fe, Silver City and soon in Roswell.

In another region of the state The Arc of New Mexico provides funding to The Arc of San Juan County, near the Navajo Nation, to provide advocacy. Advocate Dolores Harden, an employee of the local chapter, is known for her ability to relate with the people she serves on a personal level. Harden, who has two sons with intellectual and developmental disabilities (I/DD), visits and serves individuals and families at their homes and is also involved in a self-determination program for people with Down syndrome. Costales says that her work has been integral to The Arc’s success in New Mexico.

“She is a quiet, unassuming woman who is one of the most effective advocates I’ve ever seen,” said Costales. “Because of her, we have reached more people.”

Thanks to the Isabel Gonzales Trust established in 2010, The Arc of New Mexico is able to provide special services and support for individuals with Down syndrome and their families. The Arc of New Mexico has used funds to provide person centered planning for people with Down syndrome and their families as well as stipends to attend national and state conferences.

“We’re very appreciative of the partnership with the national office,” said Costales of this joint venture of The Arc of New Mexico and The Arc’s national office.

There are many areas of the country with diverse populations and thanks to a grant from the MetLife Foundation, The Arc is launching a new diversity initiative to make programs and services more accessible to those diverse communities. The Arc’s national staff looks forward to learning from chapters with rich diversity like The Arc of Mexico, and hopes other chapters will find inspiration from all this state chapter has accomplished.

With 60 years of experience, the organization looks to the future of service for individuals with I/DD in New Mexico. Lessons from the past will ensure many future successes and growth for this powerful chapter of The Arc.

“What I love about my job is the diversity of the people we serve,” said Costales. “Each county and community is different.”

Reflecting on Wings for Autism

By Sylvia Fuerstenberg, Executive Director of The Arc of King County.

Wings for Autism event registration

Wings for Autism took flight at SeaTac Airport, and it was a great success. I am so grateful for all of the families who took part in our launch, as well as the many volunteers who made the event a success. The commitment of The Port of Seattle and Alaska Airline is phenomenal. They are single minded in making travel inclusive for everyone. The TSA even made going through security a positive experience. When that is true, you know that everyone was committed! Although I could say a lot more about the event, I would rather let some of the parents and event partners tell you about their experience.

From Lisa Okada Visitacion, Mom:

“Phenomenal event. Increasing awareness and understanding. Building confidence and skills. Giving families hope. These are just a few thoughts I had about the Wings for Autism event yesterday. Kelli (and all the other participants) did such an amazing job. Many, many thanks to all the volunteers (there were many!) and staff at The Arc of King County, Alaska Airlines, TSA and the Port of Seattle. We will remember this experience forever and will most likely be flying Alaska Airlines when we travel by air. (I wonder if we can we take along a few of the volunteers, too?!?!)”

Wings for Autism pilot & child

From Jacki Jones Chase, Mom:

 “We got in the plane and they taxied it all over the airport runways. Then they stopped and let the kids, and adults, go check out the cockpit and bathrooms – they really put on an awesome event for kids with Autism!”

Wings for Autism pilots

From Jennifer Wade, Mom:

 “From the moment my family arrived at the airport, there was a friendly, smiling person with a Wings of Autism T-shirt on, guiding us along our way.   Every step of the process we were assured, explained the process and every attempt was made to ensure we were comfortable,  our questions answered and made to feel at ease in what is potentially a stressful situation for any parent /caregiver, taking a child on a flight. A special thanks to our pilot Mark who walked thru the entire waiting area talking to each family, meeting the kids, shaking hands and relaying his own personal story and why the event was so important to him. Having a child with special needs I’ve learned that it’s the support of family, friends, specialist and complete strangers willing to share their own insight and compassion that keeps our momentum going onwards on the path of progress and potential.”

Wings for Autism participant

Ray Prentice, Partner at Alaska Airlines:

“I didn’t realize until this event that a little bit of additional training and guidance, combined with our great caring employees, could totally change people’s lives. Speaking on behalf of Alaska Airlines’ volunteers I can openly share that we had a blast.  We felt a close connection with everyone at the event.”

Wings for Autism participants 2

From Sue Hanson Smith, Partner at The Port of Seattle who traveled to Boston to learn about the event and inspired us to bring it to Seattle:

“Thank you for all for pulling off a spectacular, in some cases, a life-changing event. I am so proud to be part of such a well-organized, energetic, and fun-loving team of professionals! The Arc of King County rocks! Without you we would not have had the families and the special kids to learn from.

Without Alaska Airlines we wouldn’t have been able to provide the “life-changing” experience. Thank you so much for your flexibility and your generosity in providing the airplane experience and memories to these selected families and their children. The t-shirts were the best!

And…TSA was outstanding in their ability to provide an easy, pleasant experience to the families and their children. From all the comments I heard, the first Wings for Autism at Seattle-Tacoma International Airport was a great success and it’s because of all of you.”

Wings for Autism participants

A Chapter of The Arc Promoting Health and Nutrition in Schenectady County, New York

Know Grow Eat participants A few years ago, Schenectady County Public Health Services and Schenectady Arc formed a unique partnership to address the high rates of chronic disease and obesity among people with I/DD in Schenectady County through the Strategic Alliance for Health. Schenectady Arc a  provider of residential, vocational, clinical, and adult day services in New York State’s Capital Region, recognized that among its 1,480 participants, nearly 10 percent were diagnosed with cardiovascular disease, obesity, or diabetes and wanted to do something to address the needs of those they served.

While nationally-based research showed individuals with I/DD were more prone to incidence of chronic disease, Schenectady Arc had confidence that they could help their participants by improving their diet and educating them about healthy eating habits. Further research found that children who participated in a “seed to table” nutrition education program tended to increase their consumption of fruits and vegetables. Through this program, children participated in a variety of regularly scheduled activities such as vegetable taste-testing, hands-on gardening, and recipe preparation. Based on these studies, Schenectady Arc created Know, Grow and Eat Your Vegetables, a garden-based nutrition education program for people with I/DD. The agency’s horticulture coordinator oversaw the new program which was located at Schenectady Arc’s commercial-sized greenhouse in Rotterdam, NY. The coordinator assessed awareness of and preference for 15 vegetable types and, worked alongside 70 participants to plant and cultivate seedlings.

Know Grow Eat participantsWhile the vegetables were being grown, nutrition educators from Cornell Cooperative Extension of Schenectady County (CCESC) conducted a six-week program adapted to the specific needs of individuals with I/DD. This training provided participants and staff with strategies regarding healthy meal preparation practices and how to incorporate vegetables into daily meals and snacks.

This remarkable program continues to flourish and provide nutrition and education for individuals with I/DD in Schenectady County. Since the program began, participants have harvested approximately 1,000 vegetables. Vegetable packets, along with recipes, were distributed for consumption in group home or family home settings. Last year, this program was named by The National Association of County and City Health Officials (NACCHO) as a model practice and an implementation guide can be found on the U.S. Centers for Disease Control and Prevention website! Also, during The Arc’s national convention, Schenectady Arc and NACCHO presented together, giving chapters of The Arc the opportunity to learn from the success of this program.

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 (…), 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