thank you, our board members come from and represent ... · the cullman area autism networking...
TRANSCRIPT
Birmingham Junior Board Members: Alexa Jones, Andrea Newell, Audrey Pannell, Brandon Cohen, Brittney Underwood, Byrne Sanders, Elizabeth Pierce, Emily Roberts, Halley Thomas, Heather Johnson, Jessica Charlton, John Smola, Kassady Gibson, LaToya Flint, Lauren Ulm, Lea Burnett, Melanie Eckroate, Niki Harris, Raegan Carlise, Sara Croft, Stephen Frey, Summer Smith, Trey Moreland, Wesley Carpenter
Mobile Junior Board Members: Melanie Tew, Tony Shaw, Sara Beth Brutkiewicz, Katie Simm, Julie Tatonetti, Jennifer Williams, Heather Hall, Nichole Taylor, Julie Lyles, Nick Gee, Lauren Hummer, Lauren Chandler, Krissy Robertson
ASA Annouces 2010-2011 Board of Directors
Our board members come from and represent various communities in the State of Alabama. They are men and women who represent a diversity of cultures and backgrounds,
who are bound together by the ASA mission.
Bill Pearson, President Birmingham
Letter from the Executive Director
Dear Friends,
The trend at the Autism Society tends to include primarily educational programs during the fall/winter, advocacy efforts during the winter/spring, and fundraising during the late spring/summer. We are excited about implementing the many projects that you have helped to fund.
Fall Family Camp just wrapped up with 30 families attending. We have visions of expanding our camp to accommodate more families. ‘Making a Difference’ conferences will be held in Cullman (October 16, 2010), Mobile, and Huntsville. These conferences bring autism awareness and practical educational opportunities to local communities. The Alabama Autism Conference is the state’s largest conference, and for which the ASA provides scholarships to Society members. Mark your calendars to attend on February 25, 2011 at the (cont. on next page.)
*Jodie Smith, General Counsel
Congratulations to ASA’s Anna Bloom for completing the Robert Wood Johnson Foundation’s Ladder to Leadership: Developing the Next Generation of Community Health Leaders fellowship program. The program is a collaborative initiative of the Robert Wood Johnson Foundation (RWJF) and the Center for Creative Leadership (CCL) and aims to enhance the leadership capacity of community-based nonprofit health and health-related organizations serving vulnerable populations. Ladder to Leadership was implemented in 8 communities across the country, and Anna is one of 20 community health leaders chosen from Birmingham to complete the 16-month program.
Ladder to Leadership
Thank you, Networking Group
Leaders!Thank you to the Networking Group Leaders who
participated in the workshop held in Birmingham in July. They shared strategies for reaching out to target areas in
their communities, discussed local and statewide advocacy ideas, and most importantly networked with each other. We so appreciate your service to your communities and
look forward to seeing you next year!
Making a Difference in Cullman Conference
The Cullman Area Autism Networking Group and the ASA are hosting the 2nd Annual Making a Difference in
Cullman Conference on Saturday, October 16th at the First United Methodist Church, 8:00 a.m. – 4:00 p.m.
Cost $5. Registration required. Register online at www.autism-alabama.org.
Alabama Autism ConferenceBryant Conference Center,
Tuscaloosa, AL; Friday, February 25, 2011Building a Vision for Young Children:
Early Screening and TreatmentScholarships available. Stay posted for details.
Trim the Tree with a Beautiful Christopher Radko Autism Awareness Ornament
The Christopher Radko Company designs and produces fine European glass ornament. Each year, ornaments are selected for charitable fundraising efforts. This year one of the designs benefits Autism Spectrum Disorders. *Perfect gift for a teacher, family, member or neighbor who supports our cause!*
RADKO Snowman Mail Order
Name Payment Method Check #
Address Credit Card Holder Name
City State Zip CC #
Phone ( ) Exp. Date
Please send ornaments @ $35 each Total $
Mail payment to: ASA 4217 Dolly Ridge Road Birmingham, AL 35243
Mobile Junior Board hosts its first fundraiser and brings awareness
to south Alabama
Peggy Stevens, V. PresidentHuntsville
Jonathan Nelson, Treasurer Birmingham
Ryan Thomas, Immediate Past President, Birmingham
Nancy BarnesHuntsville
Tracy CampTuscaloosa
Ben CarlisleBirmingham
Suzanne DowlingTuscaloosa
Rod HarbinBirmingham
Matthew MainiSouthside
Matt MooreBirmingham
Nathan SmithBirmingham
Hanes Swingle, MDMobile
Eddie WilliamsHuntsville
4217 Dolly Ridge RoadBirmingham, AL 35243
205 Lambert Avenue • Suite CMobile, AL 36604
1-877-4AUTISMwww.autism-alabama.org
AUTISM SOCIETY OF ALABAMA
F220
947
Disclaimer: The Autism Society of Alabama hopes that you will find the information in this newsletter helpful. However, the material included could contain technical inaccuracies or typographical errors. Furthermore, references to treatment or therapy, service or service providers as well as meetings and support groups are by no means comprehensive. The inclusion of information in this newsletter should not be construed as an endorsement of any of the organizations listed or the providers referenced. ASA assumes no liability or responsibility for the use of information contained in the newsletter. Individual treatment choices should be made by the family in conjunction with a trusted physician or team of professionals who personally know the individual with autism.
ASA BOARD MEMBERSBill Pearson, PresidentPeggy Stevens, Vice PresidentJonathan Nelson, TreasurerRyan Thomas, Immediate Past PresidentNancy BarnesTracy CampBen CarlisleSuzanne DowlingRod HarbinMatthew MainiMatt MooreNathan SmithHanes Swingle, M.D.Eddie WilliamsJodie Smith, General Counsel
(Above) Anna Bloom with her Ladder to Leadership Cohort. Each of these professionals recently completed the program.
AUTISM SOCIETY OF ALABAMA
Fall 2010
WithALoudVoice
NON-PROFIT ORGUS Postage
PAIDBirmingham, AL
Permit #40
New ASA Birmingham Junior Board Officers. Pictured R to L: (back)Andrea Newell, Stephen Frey, Nikki Harris, Emily Roberts (front) Kassady Gibson, Lea Burnett
(above) Melanie Jones, Exec. Dir., and the 2010-11 Board say farewell to Ryan Thomas as his term as president ends.
ASA Grant Program DevelopmentBama Hager, Ph.D. has been working on developing the Grant Program at ASA. This summer, ASA was granted funding for two projects that will benefit Alabama families affected by Autism Spectrum Disorder.
The Daniel Foundation of Alabama is an organization that funds projects in Alabama focused on education, arts, community and medical care and research. This summer, ASA was awarded a Daniel Foundation Grant to initiate a Bullying Prevention Program through our 25 Network Support Groups throughout Alabama. The program will begin this fall and each
Autism Society of Alabama Network Support Group will receive Bullying Prevention DVDs and written materials. These DVDs and materials are designed to be used by parents of children with autism, Asperger’s Syndrome and Pervasive Development Disorder, Not Otherwise Specified. The materials may also be useful at area schools in Network Group communities. Network Support Group Leaders and ASA members will receive information about this project this fall.
The Alabama Council for Developmental Disabilities granted ASA funds to replicate a portion of the ASA Lending Library in each of the 25 Network Support Group Cities in Alabama. These lending libraries will be housed in the Alabama Public Library in each
town. This grant allows Alabama citizens in towns across Alabama to have local access to some of the newest and most accepted ASD references and information. ASA members will receive information on the availability of these resources this fall.
Other grants are pending and will be announced upon selection.
ASA in ACTION
(left) Scarlett Walker, Miss Alabama Outstanding Teen, presents a check to Jessica Charlton at the ASA office.
(above) Jessica Charlton, Resource Manager, & Lacey Ezekiel with Dale Murphy at Autism Awareness Night with the Birmingham Barons!
(left) State Senate Elect - Cam Ward with ASA Networking Group Leaders from around the state.
Bryant Conference Center in Tuscaloosa. This year’s conference will focus on young children, early screening and treatment.
With October beginning our new budget year, a new project we are especially excited about is the expansion of our Lending Library. The Autism Society is in contact with libraries in area networking group locations and plans to donate autism specific books and other resources to these libraries. In addition to spreading awareness, we feel this will make resources more easily and readily available for families who are desperately in need of information because of a new diagnosis. Additionally, we’ll be implementing a bullying prevention program across the state (more info on page 2).
In this issue, your new Board members and Junior Board members are listed for the 2010-2011 year. We have new officers and have plans to expand our Board to 20 members. If you would like to serve, please let me know. Montgomery, Dothan, Mobile and Alex City are areas in which we would like to have representation. We appreciate the willingness of these individuals to serve in this capacity and their dedication to the mission of the Society.
We look forward to the many possibilities that lie ahead. Thank you for helping to make them a reality.
Sincerely,
Melanie Jones
Letter from the State Autism CoordinatorAs State Autism Coordinator, my role is to work with the Alabama Interagency Autism Coordinating Council (AIACC) to meet the urgent need for a statewide comprehensive system of care for individuals with ASD and their families. While searching for dollars to support implementation of the system of care, a number of efforts are underway. One such effort is in determining Standards of Practice (SOP) for all fields and disciplines serving individuals with ASD and their families under an Alabama Autism Regional (AAR) Network.
Standards are statements that outline what level of service one can expect to be provided and how the service will be provided. The SOP Committee consists of six work groups addressing standards from screening and diagnosis through the lifespan. The committee’s work has been towards developing SOP based on evidence-based practice. Evidence-based practice provides a framework for integrating what is known from research into real-world practice. In effect, evidence-based practice bridges the science-to-practice gap by using three core components (a) best research evidence, (b) clinical expertise and judgment, and (c) individual values and preferences.
The final SOP Report will serve three functions related to the AAR Networks. First, the SOP will advise the AIACC on appropriate standards for programs and services provided or to be provided for individuals with ASD. Second, the SOP will provide information to be used in monitoring the implementation of SOP in programs and services. Finally, the SOP will be used to recognize the achievement of good standards and quality in the provision of programs and services to individuals with ASD.
The SOP Report will benefit all. For the individual with ASD and his or her family, the
SOP will (a) tell them what they can expect from a service, (b) give them greater awareness of their rights and responsibilities, (c) give them confidence in the quality of services, and (d) provide them with the opportunity to have a say in the development and review of services. The SOP Report will assist the service providers as they work to (a) improve outcomes for individuals and families who use their services, (b) provide opportunities for their staff to improve their skills, (c) improve use of resources, (d) plan and improve their processes and systems, and (e) satisfy accountability requirements.
The resulting SOP Report will then (a) inform development of a quality rating system (QRS) for programs and providers that participate in AAR Networks and; and (b) provide parents, policymakers, funders, and the public with information about the level of quality of programs and providers participating in Regional Autism Networks. Quality is meeting (and where possible exceeding) the assessed needs and defined expectations of the service user through efficient and effective management and processes. The QRS will be composed of five common elements including (a) standards, (b) accountability measures, (c) program and provider technical assistance, and (d) parent/consumer education efforts. All of the elements will be addressed in the initial planning for a Standards of Practice QRS.
Look for more information on the SOP over the coming months. In addition, you will be invited to review the SOP Report and offer comments, questions, and suggestions before presented for adoption by the AIACC.
Sincerely,
Caroline Gomez
Networking Group CornerPlease contact your local leader for meeting dates and locations. Alexander City - Susan Ogle,[email protected] Auburn/Lee County - Julie Brown, 334-887-3909Blount County - Jennifer Proctor & Amanda [email protected] County - Tracy Robinson,[email protected] - Felicia Agnew, 205-396-7973,[email protected] County - Rhonda Davis & Jessica Dyson,[email protected],256-962-2208, 256-339-1151Decatur/Hartselle - Jan Appling & Cindy Morgan,[email protected], 256-303-6609Dothan (FASE) - Fran Heisner,[email protected], 334-793-8714Gadsden/Etowah County - Deena Langdale,
[email protected], 256-295-7977Greater Birmingham - Renee Plata & Sue Remick,[email protected] - Tanya Sanderson,[email protected] (Making Connections) - Debbie Bumbicka,[email protected] - Beth Pickens, 706-566-1490Montgomery - Lyra Stephens,[email protected] - Jennifer Robertson,[email protected] (C.O.A.S.T) - Pam Black, [email protected], 205-221-6110Sumter County – Joann Goodwin,[email protected] Tuscaloosa - Tracy Camp,[email protected], 205-330-8995Online Info & Support Network - www.alabamaautism.com
ASA eStore
Be sure to check out all of our awareness items at http://www.autism-alabama.org
Keychains $10
Car Magnets $10 Stationary $10Plush Frogs $12
Bracelets $15
Lanyards $12
L to R: State Autism Coordintor, Caroline Gomez, State Senate Elect, Cam Ward, and Dr. Laura Klinger at an ASA-
sponsored 2010 conference.
Meet Our InternJoin ASA!
Vincent OkongwuVincent Okongwu is a doctor who studied Medicine and Surgery at the University of Ibadan, Ibadan, Nigeria. Currently, he is in the Master of Public Health Program at UAB. His concentration is in Health Care Organization and Policy and is in his final semester. Vincent chose Autism Society of Alabama for his internship because he has always had a passion for taking care of children in need and hopes to gain greater understanding of the phenomenon of autism.
a Biomedical Approach to Ameliorate Autism By Bama Hager, PhD
On July 16, the Autism Society of Alabama (ASA) partnered with Glenwood, UAB Depart-ment of Public Health, UAB Department of Psychiatry, University of Alabama Department of Psychology, Alabama Interagency Autism
Coordinating Council and Ekta Consulting to present Natarajan Karthikeyen, MD’s presen-tation, “Decisive Denominator and a Bio-medical Approach to Ameliorate Autism.” Dr. Karthikeyen was in the United States presenting at the Autism Society of America conference in Dallas. Funding from Glenwood, ASA, Ekta Consulting UAB and University of Alabama made it possible for Dr. Karthikeyen to visit Alabama and present his research and clinical findings.
The lecture was presented at the UAB School of Public Health and was open to the public. UAB faculty, University of Alabama faculty, family members, Glenwood staff members, ASA staff members and community members were in attendance. Dr. Karthikeyen’s approach to the treatment of ASD incorporates what he terms a symbiotic approach of traditional behavior ther-apy with traditional Indian medicinal techniques. Dr. Karthikeyen discussed that incorporation of yoga and Indian medicinal herbs into a tradition-al western approach to the treatment of autism. His ideas were thought provoking, unique, and generated discussion. The lecture was an oppor-tunity for attendees to get a glimpse at Eastern approaches to ASD treatment. ASA would like to thank the Alabama Autism providers and researchers who made this event possible.
Preston and Judy Thompson, Jane Witt in memory of Ed Pearson, Bill Dismukes, Leon Durham, Janice Gaston, Nick and Judy
Holland, Judy Killingsworth, Mr. and Mrs. Alvie Killingsworth, Marshall Marlow, Thomas C. Porter, Wayne and Valery Reach, Nick and Terry Saban, David and Sabrina Shea
Reitha Cabaniss, Jasper, Receives 2010 Mattie Stepanek Caregiving Scholarship Award
Begun by the Rosalynn Carter Institute for Caregiving (RCI) in 2005, theMattie Stepanek Caregiving Scholarship was created in memory of renowned poet and peacemaker Mattie J. T. Stepanek. Friend to both President Jimmy Carter and former first lady Rosalynn, Mattie believed “if all generations of people freely and abundantly give care to others and to our world, we will have an eternal source of love and hope that fulfills the needs of all ages…for all future”.
RCI recognizes that caregivers are unfortunately often viewed as expend-able resources in systems of care. As a result, many caregivers are over-looked, ill-prepared and may ultimately burn-out. Since RCI promotes the view that family, professional, and paraprofessional caregivers are the most valuable asset in any system of care; the purpose of the Mattie Stepanek Caregiving Scholarship is to provide financial assistance to those who are seeking training or education in specific skills, procedures and strategies that lead to more effective care, while also protecting their own health and well-being.
Receiving many compelling scholarship applications from all over the country, the selection process proved quite difficult. Mattie’s mother, Jeni, who serves as chair of the selection committee, states, “It is always an honor to be able to support this effort, and to see how this award is rip-pling out and touching lives in such a powerful way.“ Other members of the scholarship selection committee are Nancy Hunt, President of the We Are Family Foundation and Kelly Ellison, Director of Development, Arts Council of Metropolitan Kansas City.
Reitha A. Cabaniss, Jasper, AL – Reitha’s work history began as a regis-tered nurse over 20 years ago and has evolved into that of a nurse educa-tor. She has now been admitted into a unique doctoral program at the University of Alabama that prepares graduate students to become instruc-tional leaders by combining instruction from the College of Education and the College of Nursing. Mother of three; Reitha and her husband have struggled to provide care for 17 year old Eric, who is severely autistic. Attempting to work through the tangled system of special education and deficient community services, her hope lies in the dream of using their lessons learned to help other parents and families. Reitha believes that education is the means to unlock opportunities and influence change.
Simons Simplex Collection: A Research Initiative Focused on “Out-of-the-Blue” Autism
Excerpt from Interactive Autism Network (IAN) E-Newsletter September 2010
Most families affected by autism spectrum disorders (ASDs) have just one child with ASD. Often that ASD seems to have come from “out-of-the-blue.” It does not seem to have been directly inherited, in a genetic sense, from a person’s parents or grandparents. It may be the result of changes to genes, called mutations, or the result of an environmental factor that interferes with a gene,
perhaps by turning it “on” or “off.”
The Simons Simplex Collection (SSC) partners with families that have only one child with ASD for in-clinic evaluations and to collect DNA samples. The information gained will help researchers explore genes, and gene-environment interactions, in autism, providing insight into ASD risk factors, causes, and potential treatments. The project is not just a one-time study, but a unique effort to create a bank of DNA samples and accompanying family histories, that will permit researchers to explore multiple questions in simplex autism far into the future.
To learn more about this study and/or eligibility to participate, go to https://sfari.org/ssc-get-involved or email [email protected] or call 866-348-3440.
It’s a Girl! ASA Says Farewell
ASA Resource Manager, Jessica Charlton, has recently accepted a position in the Nashville area. She was a great addition to our
team and will be missed!
Social Media CornerThe Autism Society of Alabama is utilizing its social media outlets now more than ever! By connecting with us on facebook.com, twitter.com or youtube.com, you will be accessing up-to-date information on the latest ASA news and events. We value having the ability to engage with our constituents and hope that you will connect with us online! Please use the links below to locate us!
http://facebook.com/AutismSocietyofAlabamahttp://www.youtube.com/user/AutismSocietyAL1http://www.twitter.com/AutismSocietyAL
ASA would like to send a big congratulations to new mother, Jennifer Robertson! Madelyn
Grace Robertson was born on July 7th at 1:50am. She weighed 7lbs 13 oz and
was 21 inches long!
Thank youfor Joining!Timothy Burch, Mike and Deborah Carlton, Edward and Sheryl Fowler, John B and Mary
Isbell, Tammy Naler, Unitarian Universalist Fellowship of Montgomery, Cyndi Patterson, Miranda Rolen, Cheryl Thomas, John and Deborah White, Gay
Wilhite, Sandy and Chris Hemmer
Angels for Autism Golf Tournament Fun for a great cause!On Saturday, May 29, 2010, The Golf Club in Anderson hosted the annual Angles for Autism Golf Tournament.
The shotgun start tournament is held in memory of Elyse St. John Shirley and in honor of Blake Shirley, who is among the 1 in 110 now affected by autism in the state of Alabama, and the tournament boasted 68 participants.
According to tournament director, Marshall Marlow Sr., charity begins on the golf course at this tournament, which benefits the mission and projects of the Autism Society of Alabama. This tournament is a time for people in the area to come together to raise autism awareness through positivity.
In the process of golfing for the cause, participant Andy Eady, resident of Rogersville, AL, proved his chops on the course. After the shotgun fired, Andy made his first swing of the day on hole #7. His partner Chad Belue, as well as two watchers
who were stationed on the green, witnessed this 137-yard shot directly into the hole!
Andy has played golf since 1978, but was probably still surprised that his hole-in-one took place on the $10,000 grand prize hole! Everyone on the course was excited and the day proved to be a fun time to come together and bring
awareness to autism.
The Angels for Autism tournament occurs annually in Anderson, AL. For more information, contact Jennifer Robertson at [email protected].
Glenwood Annouces Affordable Housing
Glenwood, Inc. is pleased to announce that under the TARP Program we have comfortable, affordable housing now available for both individuals with Autism/Asperger’s syndrone and families with a loved one with Autism. In order to apply you must meet income eligibility requirements. If interested, or for more information, please contact Christine Williams at 795-3213.
Glenwood, Inc. is also immediately seeking both live- in mentors and foster parents for children and adults with Autism. A very comfortable home provided, as well as a living stipend. Applicants must be compassionate,
responsible, and demonstrate the skills necessary to work with people. He or she must also pass a drug screen, background check, ABI/FBI, and have a good driving record. This is a great opportunity for individuals or families in need of a nice home in the Roebuck/Centerpoint Parkway area that are willing to share a home and their life with individuals in need of support. Must meet income eligibility requirements for housing assistance. If interested, or for more information, please contact Christine Williams at 795-3213.
A portion of Glenwood’s Autism Heros benefits the Autism Society of Alabama. Lee Yount, President of Glenwood, recently presented ASA with a $3,500 check. Thank you Glenwood and to those who supported the campaign!
13th Annual FROG Affair Celebration!
Show YOUR Support!
FROG Affairt-shirt $10
Even if you were not able to make it to an event, you can still show your support!
To order items, visit www.autism-alabama.org or conact Jennifer Robertson at [email protected]
Be sure to inquire about other event t-shirts as well!
Thank you to our 2010 Sponsors!
Autism Awareness Pins$15
13th Annual FROG Affair
Flying down zip lines, canoeing across the lake, and horseback riding through trails were all activities Debbie Bumbicka never could have dreamed that her son, Mikey, would do when he was diagnosed with autism. However, Mikey, along with other children around the state, had the opportunity to accomplish these skills and more at the Autism Society of Alabama (ASA) family camp at Camp ASCCA.
A weekend at Camp ASCCA sponsored by the Autism Society of Alabama is just one of the many programs that the 13th Annual Autism-Asperger FROG Affair supports. ASA hosted the FROG Affair on August 21, 2010 from 7 p.m. to 10 p.m. at WorkPlay.
“The event was a time to celebrate, while embracing a disorder that now affects 1 in every 110 individuals,” said Melanie Jones, Executive Director of the Autism Society of Alabama. The FROG Affair receives its name from the ASA mascot and means “For Research, Outreach and Giving Support” to the autism and Asperger’s syndrome community.
The 13th Annual FROG Affair was presented by Infinity Insurance Company and raised over $50,000 to support the mission and projects of the Society. A bidding war for the Wellness Pharmacy Big Sky Adventure, Alabama Crim-son Tide sky box tickets from Allison and Matt Moore, and a double strand pearl necklace from Barton-Clay really got the event hopping.
Special guest Brett McBrayer, President of the Birmingham Auto Dealers Association, received the ASA President’s Award, along with Ryan Thomas, former ASA president, and Ben Carlisle, former Junior Board president. “This is our way of recognizing and thanking these individuals for their commitment to our orga-nization and for making a difference in the lives of those affected by autism spectrum disorder,” said Bill Pearson, current Board President of the organization.
A special thanks to everyone who supported this event!
Benefiting the mission and projects ofthe Autism Society of Alabama