Here is the latest information from RFTS. Check out the information towards the bottom to donate money everytime you do an internet search without spending your own money.
If you're a parent, caregiver, relative
or friend of a child with Cerebral Palsy
Please Read And Spread The Word...
My name is Julia Bowen and I work as a professional for a contracted MHDDAD (Division of Mental Health, Developmental Disabilities and Addictive Diseases) Medicaid waiver provider as the State Intake Coordinator. The program I work for is a residential program for people with developmental disabilities. To learn more about our program, please visit www.lsga.org or feel free to call me at 770-256-2988.
I am a Psychology major and was educated in South Carolina, even though I'm a native Atlantan. I've had a long career in the disability and advocacy communities in Georgia, spanning about thirty years, professionally, as a parent, and on a volunteer basis. The one that has been the most fulfilling has been, by far, raising two children with developmental disabilities. My children with disabilities are 32 and 16. Both are Medicaid waiver recipients - residential for one; physical therapy and supports in my home for the other. My daughter has Trisomy 13, a genetic chromosome disorder resulting in profound mental retardation and various other medical anomalies. My 16 year old has Autism and Sheurmann's Disease, a spinal cord disease affecting tissue growth and strength. I am so proud of both of these incredible children, can you tell? I also have a disability called Stargardt's Disease with co-occurring rod-cone dystrophy. I received this diagnosis 16 years ago and have been very fortunate to experience a slower progression than any of my doctors predicted.
I graduated from the Partners in Policymaking Program in 2002 and have since served on the Governor's Council on Developmental Disabilities, first as an ex-officio and currently as a full Council member. I also am the State Coordinator for Family Voices, a National network established to provide assistance and information to families of children with special health care needs. A large portion of my efforts have been centered around Education as a Board member and past Chair of the Statewide Education Committee of The Arc of Georgia. I'm also a past Board member of the Dekalb Community Service Board, another contracted MHDDAD provider. Currently, I facilitate a meeting between the Department of Human Resources, Office of Developmental Disabilities, and an advocacy community made up of families and providers. I also provide advocacy and resource networks for families of children with disabilities through several online efforts.
Please feel free to call me at 770-256-2988.
Partners in Policymaking is a nine-month program that is specially designed for developmental disabilities self-advocates, parents and relatives, and has produced graduates across the state who have strengthened the voices of individuals living with developmental disabilities.
"The goal is simple: to establish and maintain productive partnerships between people needing and using services and those who make public policy and laws. To accomplish that objective, the program works to educate its participants about current issues and best practices and familiarize them with policymaking and the legislative processes at the local, state and federal levels. Participants also learn what they can do to act as a catalyst for change. Upon graduation, participants use their new skills to work to obtain state-of-the-art services for themselves and others."
For more information on the program and how you can become a partner, click on http://www.aadd.org/newsite/programs/partners.html.
Parent Mentor Program: A joint venture between GCPS and the Georgia Department of Education, this program helps build a bridge between families and schools by developing understanding, respect, support, and the communication skills needed to support a home-school partnership focused on student achievement.
For more information click on http://www.parentmentors.org. This information is good but updated in 2003 so the contacts are not current. Contact Parent to Parent of Georgia at 800-229-2038 and they will guide you to the right person or agency.
Parent Mentors for Gwinnett County
Anne Ladd (2006 Mentor)
Gwinnett County Public Schools
437 Old Peachtree Road, NW
Suwanee, GA 30024-2978
Phone: 678-301-7212
Fax: 678-301-7222
Email: anne_ladd@gwinnett.k12.ga.us
Jackie McNair (2006 Mentor)
Gwinnett County Public Schools
437 Old Peachtree Road, NW
Suwanee, GA 30024-2978
Phone: 678-301-7149
Fax: 678-301-7222
Email: jackie_mcnair@gwinnett.k12.ga.us
Heidi J. Moore
To stay up to date on Medicaid and other government issues concerning your children with special needs go to Heidi's website and become a subscriber.
http://www.lgtinc.org/authors/41/Heidi-J.-Moore?Page=4
The Governor's Council on Developmental Disabilities must collect some
information from individuals who have used Council services or products,
or who have participated in any Council funded projects, activities,
initiatives or opportunities, ("consumers" of our activities). Examples
of these would be Partners in Policy-making, Disability Day at the
Capitol, Partnership Funds, Voices that Count, etc.
The Council has prepared an On-Line survey that is very short and easy
to complete. Please take a few minutes to complete the survey at
http://www.surveymonkey.com/s.asp?u=510792571882
Continue reading "Survey - Governor's Council on Developmental Disabilities" »
Reaching For The Stars. A Foundation Of Hope For Children With Cerebral Palsy was started by Anna Marie Champion and Cynthia Frisina Gray in late 2004. We are two mothers determined to go above and beyond what is currently possible to make a profound difference in the lives of our children and others, who suffer the negative physical, emotional and social impact of Cerebral Palsy. We saw the need that exists for more progressive research on the causes and possible cures and treatments for children with CP. We realized…."if not us…then who?"…and RFTS, Inc. was born.
RFTS Mission: Foster national Cerebral Palsy research with the goal of expediting the creation of new medicines and effective treatments for children with Cerebral Palsy.
We will also focus on:
• Building community awareness, education and patient advocacy, on a nation-wide basis, among care givers and health care providers regarding new and promising research, treatments and therapies.
• Developing and promoting new discoveries and clinical research programs that will advance the pharmacological, surgical and therapeutic treatment of CP.
For more information on this organizations, see http://www.reachingforthestars.org/index2.htm
Book helps moms meet their needs
Atlanta mothers, Heather Fawcett and Amy Baskin, with special needs kids co-wrote "More Than a Mom".
Behind almost every special needs child, there's a mother -- a mother who is often frazzled, stressed, worried and exhausted and who rarely puts herself on her own "to do" list, according to Amy Baskin. She wants mothers of special needs kids to carve out some "me" time.
"There was lots of information about special needs kids and how to help them through sports and school. Heather and I would go to autism conferences all the time," said Baskin. "But nobody was talking about moms and how they are affected. And we thought, 'That's something we can write about.'"
Hi! I am Karen Addams and I am a Partners in Policymaking graduate from 1995. My husband, Peter, and I live in Lilburn and have two daughters. Mary Anne has severe multiple disabilities and is 19. Caroline was born after graduating from Partners and is 11 years old. As a result of Caroline's speech delay and her involvement in the Babies Can't Wait program, I became a Parent Educator for Gwinnett/Rockdale and Newton Counties Babies Can't Wait program in 1999. I continue to work for Babies Can't Wait today, enjoying the interaction and mentoring with families of young children with special needs. As a Parent Educator, I have also been involved at a statewide level in parent trainings, program and policy planning and parent leadership programs.
In 2000, I started an internet discussion group for families in the Babies Can't Wait program (BCWFamilies). This group was so successful that I started another group for parents of school-age and adult children with disabilities in the state of Georgia (GA-ParentNetwork). This grassroots parent advocacy group of over 700 members allows
parents/guardians from across the state to discuss issues pertaining to their children's disabilities without leaving their home - something that many parents (like me) desperately need! In addition, to the BCWFamilies and GA-ParentNetwork, I now manage (with help) the Autism-GA group which has over 800 members consisting of parents and professionals involved in the autism community.
I am also involved with SPECTRUM (Gwinnett County's Autism Parent Group), the Gwinnett ICC (GECIC), the Rockdale/Newton ICC (RNICC), Parent to Parent of Georgia and the Georgia Parent Mentor Program. I am a former parent representative of the DOE State Advisory Panel for Exceptional Students.
Partners in Policymaking gave me the foundation for all the work that I do. I try to take with me the lessons of advocacy, partnership and respect for diversity into all the projects that I am involved with.
To contact Karen Addams email her at KAddams@aol.com.
This page contains an archive of all entries posted to Candice Lange in the Mentors and Advocates category. They are listed from oldest to newest.
Keeping Records is the previous category.
Recreation - Travel, Sports & Events is the next category.
Many more can be found on the main index page or by looking through the archives.