Filling a Vacuum for LGBTQ Supports: A Conversation with The Arc Mercer’s Steve Cook

Last year, a client at The Arc Mercer approached Executive Director Steve Cook to confide in him about his struggles feeling accepted in the community. It was an “aha” moment for Steve – and one that led to the creation of what is believed to be among the first initiatives that exists to meet the support needs of individuals with disabilities who identify as LGBTQ.
Members of The Arc Mercer's SNAP program supporting LGBTQ individuals, including executive director Steve Cook, are seated on a couch smiling for the camera.
Tell us about the SNAP program and how it came to exist! What type of activities does it involve?

When I realized that someone we served in our agency was struggling with how to successfully integrate into the community as an LGBTQ individual with special needs, I researched other possible resources and found none really existed that comprehensively provided integrated community settings and professional counseling.

I decided The Arc Mercer would commit to developing a program that not only met the needs of someone who identified as LGBTQ with special needs, but that we would share our experiences to allow others to replicate the program.

That is basically how SNAP was formed.

How is the program helping you build a presence and connections/partnerships in your community – both with media and with other organizations?

SNAP has garnered incredible media support due to its unique status as one of the first of its kind in the nation.

As we shared this organization’s mission throughout New Jersey, and the region, we found leaders of other organizations are receiving feedback from their frontline staff about the need for LGBTQ supports for those that they serve. This has led to an incredible surge in awareness by organizational leaders about the need for this type of support.

How do you create that safe space where individuals to feel comfortable participating in the group activities?

One of our first steps was to identify staff within our organization who sympathize with, and support, the mission of SNAP.

This allowed us to build a supportive environment for those we serve to engage in community activities and dynamic professional counseling sessions (through our health care clinic) that focus on creating integrated and safe community events and professional counseling sessions (individual and group), that have evolved into a social environment for members of SNAP to thrive within.

What does the future of the program look like to you?

It is our hope that the framework of our current SNAP organization, including integrated community events, and a comprehensive counseling program (that encourages individuals, their friends and family, and others who identify as LGBTQ with special needs, to openly communicate about how they feel and their goals), will be able to be replicated throughout the nation.

Why do you think establishing groups like this is important? Do you have any advice for other chapters looking to build out programs that address traditionally underserved/under-represented communities like this?

Chapters of The Arc have always strived to find best practices and share them with other chapters nationally.

I think our experiences will allow others to build programs that create safe environments for those we support to be integrated, healthy and safe in the LGBTQ community.

My advice to any chapter looking to replicate our program is to identify those in your organization who support this mission and encourage them to organize events with LGBTQ organizations in local colleges, schools and community organizations.

More importantly, identify counseling resources to support staff, family members and those we serve who identify as LGBTQ.

This may be hard, but thanks to a suggestion by a member of The Arc’s national team (Allen Miller), we are exploring the use of telemedicine (counseling) through our Healthcare Center.

Of course, I am always available to talk directly with anyone who wants to explore forming a similar group at stevencook1@msn.com.

 

July Executive Spotlight: Christiano Sosa, The Arc of Colorado

Christiano Sosa, Executive Director of The Arc Colorado, smiles for a photograph wearing a blue polo. In fall of 2017, The Arc of Colorado welcomed Christiano Sosa as its new Executive Director. With a strong background in cause-driven work, Christiano has spent his first few months at the helm achieving big policy victories in employment, housing, DSP wages, and more.

 

Welcome to The Arc Family! Can you tell us a little bit about your background, and what drove you to become involved with the disability sector?

I have worked in social justice the entirety of my career, and I can’t imagine not being involved in social justice. I can’t think of a better organization that aligns with my values more than The Arc. The last 12 years I have worked in philanthropy providing resources to great non-profits that took on the work of addressing systems issues. While I loved my work in philanthropy, I came to understand that money alone cannot solve the problems unless system changes are effectively implemented. This came to be my calling.

What are some of the top priorities for your chapter right now, and how are you addressing them?

We certainly have our eye on reducing the waitlist so people get the right services at the right time. We will be looking at the settings rule and how that is implemented in Colorado. We will be working with our partners to ensure all of the rules and the promulgation of those rules are informed by the collective experience of the 14 chapters across the state. Inclusion and equity, in all of its forms, needs to be top of mind when we think about any systems or policy change. It will be a central focus of the Arc of Colorado moving forward.

Your chapter has worked heavily – and effectively – on a variety of legislative advocacy at both the state and national levels. Tell us about some of your biggest wins over the past few months.

We had tremendous wins in this Session. All five of our prioritized bills went on to the Governor. We had a priority in ensuring that people with intellectual or developmental disabilities have clear paths to employment, and through our work with our partners at the Department of Health Care Policy and Financing (HCPF), the Disabilities Council, the Arc of Larimer County and countless others, we ensured that people understand best practices under discovery and intake. People with I/DD in the state now have landlord tenant rights, which they were previously excluded from. We were able to increase Direct Service Providers’ wages 6.5 per cent. We whittled down the waiting list for the Comprehensive Waiver to close to three thousand. We were able to reauthorize the Child Mental Health Treatment Act and make that permanent.  Finally, we were able to move the Children’s Habilitation Residential Program Waiver (CHRP) over to HCPF from the Department of Human Services, and eliminate the previous waiver requirement that parents give up their custodial rights if their child has mental health needs and requires residential treatment. I am happy to share our journey with others at csosa@thearcofco.org.

What are some of the greatest challenges and opportunities you see on the horizon for The Arc of Colorado?

I am fortunate to come into an organization that is widely known and respected at the Capitol for our bipartisan work. This is difficult, complex work. It takes whole communities to rally together. The measurement of success for me will be when I see individuals with I/DD getting the right supports at the right time, throughout their lifetime and are part of society in ways they haven’t necessarily been in the past.

What advice do you have for other chapters working to ramp up their advocacy efforts?

It is incredibly important that we work on a bipartisan level. Fundamentally, I believe policy issues around individuals with intellectual or developmental disabilities are bipartisan. Our job is two-fold, one is about education and the other is to work with our elected officials so the voices of people with I/DD are heard. Beyond this, we must always be sure that inclusion and equity are the top values that we adhere to, if inclusion and equity come first, good policy can follow.

Tell us one fun fact about yourself.

I am a certified cake decorator in buttercreams, fondant, gum paste and a variety of other techniques. I find the work relaxing and there is the bonus of sampling the creations!

 

We want to hear about the amazing work your executives are doing in chapters across the country! If you’re interested in being spotlighted, please email Pam Katz at katz@thearc.org.

Creating Healthy Habits with The Arc of Kentucky & The Arc of Central Kentucky

Throughout 2017, The Arc of Kentucky and The Arc of Central Kentucky participated jointly in The Arc’s Health and Fitness for All program. Health and Fitness for All addresses increased obesity propensity in the disability community by teaching healthy eating, portion control, and physical activity and helping individuals with I/DD adopt healthy habits and lead healthier lives. Sherri Brothers chatted with us about the chapter’s work, the importance of teaching healthy habits, and how other chapters can do the same.

 

Tell us about your chapter’s Health and Fitness for All efforts. How did you hear about the program? How are you tailoring the program to your chapter and participants?

Health & Fitness was created in Kentucky because of the obesity rates, sedentary lifestyles, and unhealthy eating habits. Some of our individuals were not well- educated in nutrition facts or the options of exercise. The Arc of Kentucky heard about the program through The Arc of United States. We created an individualized program for each person. One young man with autism in our program loved writing but had no interest in exercise at all. A psychologist used the young man’s interest in writing to facilitate a relationship with others who loved writing. We created a program where he would start working out on a stationary bike while at the same time sharing his stories with his peers and the psychologist. He now enjoys exercising and looks forward to class each week.

Sherri Brothers, executive director of The Arc of Kentucky, participates in a fitness class with another instructor and two students..

Why do you think it’s important for people with disabilities to learn about living a healthy lifestyle?

Chronic ill health can diminish an individual’s enjoyment in and ability to engage in all that life has to offer. By providing people with I/DD an opportunity to make informed decisions about their health by educating them on the value of proper nutrition and exercise and the impact it can have on how they feel physically and emotionally, we are giving them the tools to own their well-being. That is the key to success.

Was the program successful? How so?

Yes! We have seen so many positive outcomes in the time we’ve been running the program: program weight loss – 168 pounds; lowered blood pressures, regular participation in exercise programs; participants learning how to shop and making healthier food selections; learning how to prepare healthier meals; and improved self-esteems and friendships made. At our three-month post-training check in, Annie has lost an additional 38 pounds and wants more information about healthy diets. Josh is watching his diet and is using less salt. Shaud is drinking more water and changed to drinking diet soda over sugary drinks. Nyketta has joined the YMCA to be able to continue her exercise.

Are you planning on expanding the program past the conclusion of the 12-week training? How so?

We passed the 12-week program and are planning to offer an additional four weeks of fitness classes in the fall and four weeks of cooking classes. We are also starting The Health & Fitness for All in other local chapters around the state. I am visiting with them, providing materials to them, and replicating the program which was very successful in our chapters — although encouraging them to tailor the program to their individuals’ needs. This just gives them a starting point – some helpful materials, ideas to start creating field trips, speakers, activities, games, etc.

What advice do you have for other chapters looking to implement health and lifestyle programs to enrich the lives of their constituents?

My advice is to look at the program as an enjoyable lifestyle change for the individuals. Think of it as creating a fun atmosphere for them to create the class, participate as the leaders in the class and the games. For instance, you teach a dance class, and then have each participant lead their favorite dance routine.

Tell us about all the great things your chapter is doing! If you’re interested in being spotlighted, please email Pam Katz at katz@thearc.org.

Fostering Community Connection through Comcast Cares Day: The Arc of Macomb County

Executive Spotlight

Lisa Lepine

The Arc of Macomb County

Clinton Township, MI

For over 15 years, Comcast Cares Day has provided an opportunity for Comcast NBCUniversal staff to volunteer their time with non-profits, schools, parks and other organizations to a positive impact within their local communities. Once again this year, chapters of The Arc across the country partnered with ComcastUniversal – and The Arc of Macomb County was one such chapter. Lisa Lepine, the chapter’s executive director, chatted with us about her chapter’s work and the value of inclusive volunteering.

  1. Tell us about your project for Comcast Cares Day! What type of project did you do? Are there any other community entities or groups that you partnered with? How many people did you impact in your community?

    Approximately 50 Comcast volunteers, from ages 6 to 60, spent Comcast Cares Day with more than a dozen employees, board members, and clients of The Arc of Macomb. The Arc of Macomb serves several hundreds of people per year, including operating a day program, organizing community outings, and providing employment services for people with developmental disabilities. Comcast volunteers organized the project of removing landscape rocks and weeds, installing barriers, and replacing the rocks; cleaning other landscaping and hardscaping; and repairing and painting walls inside the building. Some of Comcast’s employees drove almost two hours to attend the event! Several of the younger volunteers painted rocks to distribute throughout the grounds, beautifying the appearance for The Arc’s employees and clients. Both frequent and new visitors have appreciated and commented on the improvements from Comcast’s volunteers.
  2. How did you get connected with Comcast?

    The Arc of Macomb has used Comcast Business for its internet and phone systems for approximately four years. The Arc chose Comcast for its reputation for reliability and service.  Although occasional outages are unavoidable, Comcast has consistently provided accurate estimates of expected downtime and repairs, enabling The Arc to effectively allocate its resources during interruptions in service. Comcast’s on-site technicians have been helpful, timely, and worked well with The Arc’s IT company to keep things running smoothly.
  3. Why do you think it is important to engage in inclusive volunteering in your community?

    The Arc of Macomb’s mission is to help people with disabilities and their families engage meaningfully in their communities. Volunteerism – from everybody! – is an important and inclusive way for people to interact with people in their communities, particularly with people whom they might not otherwise meet. Volunteer events like Comcast Cares Day fosters connectedness among people in a community and thereby strengthens the community in immeasurable ways.
  4. What advice do you have for other chapters and organizations looking to get involved in inclusive volunteer opportunities?

    Many people want to volunteer in their community, but they don’t always know exactly how. Conversely, organizations always want volunteer help, but the volunteer opportunities they have don’t always line up with the volunteers’ availability. Comcast’s organizers scheduled a clearly defined date and time a few months in advance, held a pre-event planning meeting a few weeks before the event, clearly communicated the details of our organization and of the event, and obtained the necessarily materials in advance. The planning of the event, combined with the communication of the details of the organization and of the event, were critical to the success of the event. Going forward, most volunteerism will be centered on a clearly defined event, with clear and concise descriptions of the organization and the event.

See more photos from The Arc of Macomb’s volunteer day.

 

The Arc of the Bay: Thinking Outside the Box to Improve their Chapter and Community

Ron Sharpe, Executive Director of The Arc of the Bay, stands smiling in front of a sign with the chapter's name on it.

The Arc of the Bay in Florida has had an exciting few months! In 2017, the chapter affiliated and branded with the national office – executed seamlessly by their executive director Ron Sharpe. This past month, the chapter participated in a summit focused on transitioning from facility-based to community-based employment. Ron reflected with us on the challenges and opportunities that strengthen and propel his chapter forward as they continue to advance our universal mission of inclusion for all.

 

First, we wanted to formally welcome you to our chapter network; your chapter recently rebranded and joined forces with the national office! What initiated that process?

We were strategically planning on how we were going to celebrate and fully maximize our upcoming 60th anniversary in 2017. We had a focus group & graduate students from our local Florida State University – Panama City Campus provide research & feedback that while we have been in Bay County, FL for 60 years, many families and businesses still didn’t know who we were, St. Andrew Bay Center, and what our mission was. We were already affiliated with The Arc of Florida, and when we reviewed what The Arc of the U.S. had to offer, we knew it would only strengthen our daily operations with the wide range of resources that would be made available to our agency…including branding and name recognition. 2017 represented the largest overall growth that we have experienced within the past 10 years in every facet of our business model…double-digit increases in our ADT enrollment, Supported Employment services and including our overall fundraising.

At the end of last month, you attended the Provider Transformation Network Summit in DC on transitioning from facility-based employment to community-based employment programs, along with four other chapters. What motivated you to attend, and what were some of your takeaways?

I attended the PTN Summit hoping to learn from other leaders within those four chapters in what they found to be successful or not within their communities within this transition. I was able to hear that we are all experiencing some of the same struggles and opportunities, but learned of different or new ideas to hopefully getting new results. We all came from different levels of years of experience, but through our ideas and building relationship, we now have another resource network to continue to build upon as we continue to work through this transition.

The national landscape is changing, with an increasing emphasis on community employment opportunities for individuals with I/DD. How is this affecting the direction of your organization as it relates to employment services? What kind of work are you doing in your chapter to advance community-based, gainful employment for people with I/DD?

The Arc of the Bay has fully embraced this process ranging from implementing an initiative of The Arc of Florida “Dream Inspired Planning” where our individuals shared what their job goals are communicating through pictures on their own dream boards to promoting individuals and their job skills and experience in our local paper every Friday in a section we created and titled “Employment Highlight”. The process with “Dream Inspired Planning” reinforces “self- advocacy and self-determination in setting future goals on what they would like to do. We also use every social media to advocate on behalf our clients, our employers and our staff on the successes made.

Do you have any advice for other chapters looking to strengthen their employment initiatives?

Sounds so simple, but think out of the box when thinking about new employment opportunities! Everything we do is “NETWORKING” and making contacts. Look at civic clubs, like your local Rotary or your chamber of commerce.

No Rest for the Weary: Hurricane Harvey and Its Effects on People with Disabilities in Beaumont, Texas

by Hannah Colletti, The Arc of Greater Beaumont

People with Disabilities Affected by Hurricane Harvey

Some of the clients and providers staying at The Arc of Greater Beaumont pose for a picture in front of boxes of generous donations.

The flooding in Beaumont was unprecedented. Slowly, one by one, different sections of the city took on water. Some flooded during the days of seemingly ceaseless rain. Others flooded days after the storm, when the sun had finally come out, but when the bayous and rivers began to crest. Among the masses of those affected were people with disabilities. When one group home flooded, clients took shelter in another, until eventually a majority of homes had been damaged. Without a place to go, The Arc of Greater Beaumont offered refuge in their building. Chapter staff and their board scrambled to find air mattresses, pop up tables, and folding chairs to make people as comfortable as possible, as residents of five flooded group homes took refuge.

People saved what they could carry. John, a 21-year-old regular client of The Arc of Greater Beaumont with cerebral palsy, had a change of clothes, an extra pair of tennis shoes, a computer bag, a heat pack to help ease the recurring pain in his shoulder, and a single framed portrait of his family. He had lived in a group home in Bevil Oaks since December of last year, but unfortunately, it was almost completely underwater. Without a house to return to here in Beaumont, he feared he would be transferred to a home two hours away in Lufkin, which would put him farther from his family, his girlfriend, and his community.

The stress on clients and providers alike was palpable. Simple tasks like taking medicine became difficult due to the scarcity of water. No laundry facilities or showers were available, so providers were hand washing clothes and setting up sponge baths with what little water they could spare. Clients felt cramped. Though the space was accommodating, there was little more than a few feet between beds. Sleep was hard to come by for some, who were easily kept up by movement and noise.

Amidst the challenges, help came from our fellow chapters of The Arc from across the country, which sent supplies to help the Beaumont area. The Arc of Colorado, The Arc of Aurora, and The Arc Thrift Stores in Colorado crafted a plan to support The Arc of Greater Beaumont. Von Limbaugh, a member of The Arc of Colorado’s board of directors, reached out. Von and his son Andrew packed up a truck, loaded with 400 pounds of clothing from The Arc Thrift Stores, supplies from members of The Arc from across the state, water, food, baby supplies, medical supplies, cleaning supplies, and toiletries and they started to drive. Staff from chapters across the country were calling our executive director, offering anything to be helpful. We collected and organized donations and have been distributing them to those in need. The absence of a full kitchen made it hard to cook hot meals, yet still hot meals came from private individuals within the community. Board members for our chapter arrived with gallons of water and fresh produce. The organizations that ran the group homes did their best to fix and find spaces for their clients, and fortunately within a few days, everyone had a more stable solution to their housing needs.

Our community is still adjusting to the reality of life after this cataclysmic event. People with disabilities served by our chapter and the group homes are a part of this community figuring out how to recover. Their housing and day to day routine has changed greatly, and they’ve lost much of what has long been familiar to them. The Arc of Greater Beaumont has received numerous pleas to host events so these citizens can have a slight return to normalcy. Like any other non-profit or small business in our region, our bottom line has been impacted by this event. Thanks to the spirit of the greater Beaumont community, we have faith we will endure this hardship. And our hearts are full thanks to the generosity of our very special chapter network. We truly are a family.

Building the Bridge to Inclusion through Technology

Many day-to-day technology tasks have become so intuitive for many of us that it’s easy to forget life before these clicks and swipes. For people with I/DD, these skills can make a world of difference by building bridges to community participation.

In 2016, through our partnership with Comcast NBCUniversal, six chapters across the country hosted “Learning Labs” to foster digital literacy skills in their constituents. The classes’ content varied between chapters based on individual needs:

The Arc Baltimore (Maryland)
The Arc Baltimore’s labs provided an overview of Assistive Technology and a demonstration of devices and software to address communication, computer access, eating, environmental control, hearing, home safety, memory and cognition, telephone access, recreation, and vision. Stories were shared on how individuals have utilized devices. A certified Assistive Technology Professional worked one-on-one with participants to identify and experiment with tools that would be a good fit for them.

Easter Seals Arc of Northern IN (Indiana)
Easter Seals/The Arc of Northern Indiana hosted an instructional computer lab focusing on life skills, employment, internet safety, and money management. The session was so successful that one participant found a job he was interested during the class. The next day, he submitted an application online for that job at Game Stop and landed an interview.

The Arc of Prince George’s County (Maryland)
The Arc of PG County hosted labs covering topics related to independent living, including eating healthy, resume building, tech tools for reading, grocery shopping, job seeking/applications, money value, and understanding maps. At the conclusion of the event, local companies even pledged to employ more people with I/DD! One participant, Brianna, found a screen reader helpful—it helped her pronounce words correctly in addition to easier reading. She compared it to audible books and thinks it “unleashes the power of spoken words”.

NewStar Services (Illinois)
NewStar’s labs had a strong focus on iPad skills, including skills for independent living like taking pictures, iMovie, iModeling, maps, planning a trip, and setting and using reminders. Three Learning Lab participants, David, April, and Charles, requested additional labs on the Maps app, and were surprised to learn that there are bus stops extremely close to their houses that will help them gain independent access to the community.

The Arc of San Francisco (California)
The Arc of San Francisco’s labs were centered on using technology for independence and employment. Topics covered included internet safety, Microsoft, LinkedIn, online job searching, and the basics of email. One participant, Kristin, was struggling with how to best use LinkedIn. After working on her picture, resume, endorsements and recommendations in the lab, Kristin landed interviews at both Google and LinkedIn!

The Arc of Lane County (Oregon)
Topics on computer basics, including terminology, parts, safety/care, and typing, were covered. They worked in Microsoft Word, Publisher, Powerpoint, and used email and iPads. Most importantly, they learned about internet safety issues like identity theft protection, safe passwords, and digital footprints. “When asked about his favorite part of the class Jason exclaimed, “I was really excited to make my resume and get closer to my dream job”.

Through this simple exposure to the basics of digital technology, participants are building the skills that will support them to become more independent within their communities. We look forward to expanding Learning Labs to more chapters and building the skills to succeed in people across the country!

A Little Age, A Lot of Perspective

Jill Vaught, Executive Director of The Arc of Indiana Foundation 

It’s not very often that I’m happy to be reminded of how old I am. Today I was. You see, I grew up at a time when people with disabilities were considered disposable. If they hadn’t been sent to live in institutions, they lived in the community – but certainly weren’t included.

Today I received a photo. A student from the Erskine Green Training Institute (EGTI) had gone to one of the food courts at Ball State University for lunch. While there, he ran into friends from high school. He was invited to join their table and later go to a campus event with them.

What does this have to do with my age? I’m glad I’m old enough to remember when scenes like that weren’t possible. It helps me truly appreciate The Arc and how far we’ve come.

I have been lucky enough to work for The Arc in one way or another for 20 years. During that time I’ve seen some amazing things, but nothing has touched my heart quite like EGTI, which opened in Muncie, Indiana in January.

One of the many things that makes The Arc of Indiana such a special organization is that we still take our direction from self-advocates, families and our chapters. In 2012, it became very obvious that the lack of employment opportunities was an issue that had to be addressed.

The reason people with disabilities couldn’t find jobs wasn’t because they didn’t want to work. It wasn’t because our chapters weren’t working hard every day. It wasn’t that families weren’t trying. It always seemed to come back to training or, more specifically, the lack of good postsecondary training options.

In January, 2016, EGTI opened its doors to provide postsecondary vocational training opportunities in hospitality, food service and health care.   EGTI is housed inside a Courtyard by Marriott. Students reside in the hotel for 10 – 13 weeks as they attend classes, receive hands on training and gain experience though an internship. In addition to work skills, the students are improving their self-confidence, self-determination, soft work skills, problem solving skills, relational skills, and communication skills.

I’m happy to report that the program is working. Graduates are securing jobs with a competitive salary and benefits. We are doing exactly what we set out to do. But the thing that I enjoy the most is getting to know the students and watching them grow in skills and independence.

Zach, the young man from the story I mentioned above, told me this week that what he loves the most about being at EGTI is getting to enjoy the college environment and experience what going to college is like.   He has been taking classes at a local community college, but now he has access to a full college campus.

Leslie was one of our first students. About half way through the program she called her mother and told her to pack up her things because she wasn’t coming home. She learned that she was a “city girl” and she was moving to Indianapolis. She picked Indy in part because of her love of horror movies and Indianapolis hosts an annual horror film convention. She had a choice!

Aaron was working two jobs and still didn’t make enough money to be independent. He recently completed a program in Nutritional Services and is how working at Parkview Hospital full time with benefits. Because of his tremendous work ethic, he had hospitals fighting to hire him!

Larry, a dietetics graduate is working in the cafeteria of an elementary school. His mother told me at graduation that the first few weeks of the program she expected a call every day asking her to come and pick him up because nothing had ever worked before. She never got that call.

So far 22 students have completed the program and 17 are currently enrolled. We’ve had three graduation ceremonies and I haven’t been able to get through any of them without crying.

I can’t help but think of all of the friendships I missed out on because society wasn’t as accepting when I was growing up. I wish I could have gotten to know the Heidis and Jimmys and Sarahs that grew up in my hometown.

So yes, I’m glad I’m old. I’m glad I understand just how important the work of The Arc is and where we would be without all of the incredible chapters of The Arc across this county.

If you’d like to get to know the amazing students attending EGTI, please visit our website at www.erskinegreeninstitute.org and follow us on Facebook, Twitter, and Instagram @ErskineGreen

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 – www.arcsj.org. Primary contact is Lynne Funcheon – lfuncheon@arcsj.org.