Candice Lange

Sensory Integration Disorder (SID) - Sensory Processing Disorder (SPD)

This section includes websites and books that focus on Sensory Disorders. Please include your favorites in the comments section.

Websites:
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Child's Play
http://childsplay.home.att.net/
Site has topics relating to pediatric occupational therapy, sensory integration, and various developmental disabilities and an online opportunity to confidentially contact a certified occupational therapist with specific questions.
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Sensory Processing Disorder
Leading website with resources for individuals with SPD problems and for the family members, friends, therapists, physicians, teachers, and researchers.
http://www.sinetwork.org

Here is an interesting and informative article on all the sensory experiences that take place at the dentist and suggestions on how to make it more successful.

http://www.sinetwork.org/aboutspd/dentist.html
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Sensory Processing Disorder
Out-of-Sync Child
http://www.out-of-sync-child.com/
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Southpaw Enterprises for Sensory Processing Disorder (SPD), Sensory Integration Disorder (SID)
http://www.southpawenterprises.com/forums/
Behavior Forum
General Forum
Products Forum
Success Story Forum
Support Forum

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Here is a link to multisensory rooms with Abilitations on-line catalog.
http://www.abilitations.com/multisensory/multisensory.jsp

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For a FREE copy of the Integrations catalog, call 1-800-850-8602 or see http://www.integrationscatalog.com. Also view their Bright Ideas section on the web for articles such as:

Products That Hug And Squeeze Help Calm, Normalize And Integrate Sensory Information
Sensory Processing Issues = Sleeping Issues
What is Sensory Integration?

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Developmental Delay Resources (DDR)
www.devdelay.org
http://www.devdelay.org/issues.html#misc

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Sensorycritters.com
http://www.sensorycritters.com/cgi-bin/comcart/redeem.pl?aff=scsc146
Weighted products endorsed by Dr. Tony Attwood. Autism and sensory integration products, parent tips and resources.

http://www.unlockthewaitinglists.com/MedicaidWaiverManual.pdf

Unlock the Waiting Lists!

The mission of this campaign is to reduce and/or eliminate waiting lists for thousands of people with disabilities and their families who need home and community-based services.

To learn more about and/or to join the campaign,
Visit: www.unlockthewaitinglists.com
Call: 1-877-WAITLIST
Write: Dave@aadd.org

List of Contacts:

Governor Sonny Perdue
203 State Capitol, Atlanta, GA 30334
404-656-1776
http://www.gov.state.ga.us/about_gov.shtml
http://www.votesonny.com/default.asp?pt=doc&doc=sonnydo

Lt. Governor Mark Taylor
404-656-5030

Abel Ortiz, Health Advisor to Governor Perdue
404-656-1776 aortiz@gov.state.ga.us

Dr. Medows, Commissioner of the Department of Community Health
404-651-8681 rmedows@dch.state.ga.us

Kathy Driggers, Manager of the CMO Systems, Dept. of Community Health
404-651-8681 kdriggers@dch.state.ga.us

Mark Trail, Chief of Medical Assistance Plans, Dept. of Community Health
404-651-8681 mtrail@dch.state.ga.us

BJ Walker, DHR Commissioner, Dept. of Community Health- Medicaid
Georgia Department of Human Resources
2 Peachtree Street, NW
Atlanta, GA 30303-3142
404-651-6314
Email: bjwalker@dch.state.ga.us

Her Information:http://dhr.georgia.gov/portal/site/DHR/menuitem.24259484221d3c0b50c8798dd03036a0/?vgnextoid=8da8e1d09cb4ff00VgnVCM100000bf01010aRCRD

United States Senators
Honorable Saxby Chambliss (R)
100 Galleria Pkwy SE, Atlanta 30339-3179
(770) 763-9090
United States Senate, Washington, DC 20510
(202) 224-3521
Fax (202) 224-0072
http://chambliss.senate.gov

Honorable Johnny Isakson (R)
120 Russell Senate Office Building, Washington, DC 20510
(202) 224-3643 (202) 228-2090 (Fax)
http://isakson.senate.gov

United States Representatives
Find your representative in the House of the U.S. Congress
(202) 224-3121; (202) 225-1904 (TTY)
www.house.gov

1. Georgia's 10th Congressional District, includes Dacula, GA
Congressman Nathan Deal (R)
2133 Rayburn House Office Building
Washington, DC 20515-1009
email: http://www.house.gov/deal/contact/default.shtml

Jennifer Briggs is President and founder of Briggs & Associates. After receiving her degree in special education from Xavier University, she spent some ten years working in various special education positions in Ohio and Georgia, specializing in vocational training and career development for adults with disabilities.

She founded Briggs & Associates in 1989 based on the philosophy that anyone who has the desire has the ability to be successful in the workplace. The company has grown to over 50 employees solely dedicated community-based supported employment, now serving over 475 people across Georgia.

Jennifer Briggs

Briggs & Associates
2300 Holcomb Bridge Road Suite 103, PMB 366 Roswell, GA 30076
Phone: (404) 290-6839
Fax: (770) 552-7051
Email: jennifer@briggsassociates.org

Enable America, Inc.
www.enableamerica.org/townhall_atlanta120803.htm
Published: 12/8/2003

Enable America, Inc.
www.enableamerica.com/townhall_atlanta120803.htm
Published: 12/8/2003

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

http://www.parentmentors.org

Topics on common special needs acronyms, IEPs, Inclusion, and more resources can be found at this site.

For a current funding list contact Parent to Parent of Georgia at 800-229-2038 and they will guide you to the right person or agency.

Some other funding sources:

Make a Wish
This is the link to the steps for having a wish granted.
http://www.wish.org/about/how_we_grant_wishes

Fragile Kids Foundation (The Foundation For Medically Fragile Children Foundation)
The parents or legal guardians of any medically fragile child age 18 or younger who live in Georgia may receive an application for assistance and be approved based on medical need and availability of funds.

Fragile Kids Foundation
3350 Riverwood Parkway,
Suite 1400
Atlanta, GA 30339

Phone: 770-951-6111
Email: help@fragilekids.org
Website: http://www.fragilekids.org/

FOCUS

770-234-9111
inquiry@focus-ga.org
http://www.focus-ga.org

FODAC
4900 Lewis Road, Stone Mountain, GA 30083
Phone: 770-491-9014
Website: http://www.fodac.org

Easter Seals
Easter Seals North Georgia
1200 Lake Hearn Drive
Web Site: www.northgeorgia.easterseals.com
E-mail: ddavidson@esng.easterseals.com
Phone: 404 943-1070
Fax: 404 943-0890

Services at this location:
Medical Rehabilitation & Health Services
Physical Therapy for children
Occupational Therapy for children
Speech Therapy for children

Columbus Community Services
To get on the planning list for services.
404-321-4574

Lions Clubs International Foundation
LCIF's grants are to Lions districts for the large-scale projects they do in their areas. A local Lions club can be found at www.lionsclubs.org

GA Programs for Children with Needs
888-651-8224

Easter Seals

Easter Seals website has a large section on Job Training and Career related topics.

"Employment provides the opportunity to participate as a member of a community. Easter Seals job training and employment services help people with disabilities learn skills to successfully enter the workforce, or to return to work after an illness or injury. Not only do employees benefit from the satisfaction of having a job, but businesses also gain from their contributions.

Easter Seals can help you determine what might work for you in reaching your employment goals. Contact Easter Seals to learn more about Easter Seals Job Training and Employment services in your area."

http://www.easterseals.com/site/PageServer?pagename=ntl_job_training

Easter Seals - Project ACTION

"Project ACTION (Accessible Community Transportation in Our Nation) is a congressionally created national technical assistance program authorized under the Intermodal Surface Transportation Efficiency Act (ISTEA). The foundational work of Project ACTION is in promoting cooperation between the disability community and transportation industry.

Project ACTION maintains a database of transit systems (buses, shuttles, taxis, airport service, etc.) that are accessible for people with disabilities. Using the database is as simple as typing in your destination — for work or pleasure — and seeing the transit opportunities available to you."

For free publications and on-line resources, including the The National Accessible Travelers Database (NATD), click on the Easter Seal website link:
http://projectaction.easterseals.com/site/PageServer?pagename=ESPA_free_resources&s_esLocation=FR_

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FODAC TRAVEL RESOURCES

FODAC has a good section for travel links for accessibility and other disability travel concerns. See their website for travel at http://www.fodac.org/fodac/links/linkstvl.html
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Finding More Funding for Your Child’s Special Needs Trust
By Renée Colwill Lovelace, mba, jd, cela

Here is a very thorough article on special needs trusts and funding of them.
http://www.eparent.com/lifeplanning/financial/financial04_05.htm

Exceptional Parent On-line information on special needs or printed magazine can be accessed at http://www.eparent.com/subscribe/default.htm.

Their topics include resources, education, healthcare, life planning, technology, mobility, sports and toys.

We just had a very pleasant experience. We have an adjustable bed that needed a repair. John Glee, owner of 'Heavenly Wheels, Inc.' came and made the repair in a total of 15 minutes. Most of the time was spent checking that the bed was working properly. He was so pleasant that we spoke for almost an hour, of several things, such as how did he get started in the business etc.. He repairs wheelchairs, all power chairs, including power scooters, adjustable beds, and most things on wheels. We highly recommend him. He does the repairs 'in home', gives free consultations, and takes care of people 24/7. His base is in Norcross, GA. - Hamilton Mill Resident

John Glee, owner of 'Heavenly Wheels, Inc.
404-408-2993
www.fixyourchair.com
johnglee625@yahoo.com

Having correct medical records is very important.

Through the years I have found that keeping a running Medical History of my son has been very helpful for me and for all who work with Corey such as the doctors. Many times I've gone to a new doctor to have the same questions asked and receive a report that was completed incorrectly. It is also difficult to remember the answers to all the questions as Corey gets older, especially when he did the milestones.

This was originally created after the first medicaid application and was used for the social history and medical history. We continue to use this every year by making a copy for medicaid and attaching it to the renewal forms.

Continue to read for Corey's Medical Record outline without the personal information. You can use it as a guide to writing your own child's record or your personal medical history. Throughout the outline I will add comments to clarify information or helpful tips such as the following:

Tip #1: Do this as soon as the medical records start coming in or delays are noticed. It will be easier to remember when the events are closer to when you record them.

Tip #2: Keep this posted with milestones, medical care, contacts, etc. on a regular basis.

Tip #3: Each year at a birthday or medicaid renewal, save this record under the year's date. For example, "Corey's Medical Records 2006.doc". This will give you a saved look at that year for future use. Continue updating the original file with ongoing information.

http://www.americansignlanguage.com/

"Interactive Sign Language turns your computer into your personal American Sign Language tutor. It teaches you key ASL words and lets you learn them at your own pace." Also contains links to other hearing websites.

On-line catalogs in this section contain sites for health, safety and special needs related products and services.

Click on the picture to access more information.

A benefit of participating in a research study is a second opinion on the medical information you have gathered.

We found Dr. Dobyns at University of Chicago through www.clinictrials.gov and found out Corey's current MRI was incorrectly diagnosed by an easy mistake. Dr. Dobyns and also Dr. Walsh and Dr. Chang at Walsh Laboratory reviewed his MRI for free and found the paracentral pachygyria, which is fewer folds in the brain. Our local MRI reader said it was perisylvian syndrome, which is many folds in the brain. It is really close but still different.

Doctors from the research studies have expertise in that area of study and may be able to give the second opinion to either confirm the current diagnosis or give you the correct one. Corey's condition is so rare our top doctors in the area had not seen it before. The research doctors were also able to connect us with the few others that had the similar diagnosis.

The drawback to some research is that a free review may take months for a reply. If a quick review is needed then I was told Dr. Dobyns can review MRIs for $150. You would need to ask for a current pricing and the process.

When you log onto Clinicaltrials.gov there are thousands of studies being done for everything over the world. It is best to narrow your search as much as possible including the age range and condition. Request only active or open studies. They are even looking for healthy participants on some studies. Each research program will list its requirements, purpose and contact information. You do not have to live near many of these programs and some will pay all expenses to travel if needed.

I hope this helps you find answers and make connections with others.

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.

FACES: For People with Developmental Disabilities - Facilitating, Advocacy, Care, Education, & Shelter

FACES is a program designed to residentially support children and adults with disabilities in their communities. Primarily serving individuals with developmental disabilities, this program seeks to provide them with a meaningful life by giving them guidance, encouragement, and support. This is accomplished in one of the following models:

Host Homes: provided by people wishing to open their home to welcome in adults with disabilities who might not have family or the means to support themselves in their own home. The host home makes every effort to help the individual feel that this is his or her home, too. The Host Caregiver becomes part of the individual's family and support network.

In-Home Supports: provided in the home of the individual needing supports. Often these individuals still have family or have the means to live in their own home if they receive basic support services. These In-Home Caregivers provide structure and meaning to the individuals' day by integrating them into their communities through, for example, shopping trips, trips to the library or other social outings.

Stories: Changing lives, different thinking, and supportive companions.

In the FACES program, a woman who had once lived in an institution, where she was one of many on the unit, now has a different life. She lives in a home with a family where the couple and their children bring their individual interests and attention to her. She enjoys the hustle of getting ready for school and having breakfast, the activity and serenity of attending worship services, and the warm lick of a big dog on an outstretched hand.

For another lady, the desire to help others and earn money too, has lead to her working in an office. There she helps with the chores of keeping the office clean and presentable, and engages in friendly exchanges with others sharing that space. However, like many of us, she is careful not to have her work interfere with her social interests of a boyfriend and sports.

Yet another has changed from his poorly fitted sweat pants and tee shirt uniform, in which so many with challenges are routinely dressed, into pants that button and a shirt with a collar. Now in going out to the store or to the mall, he smiles at those he sees, he walks with a taller stature and more confident gait and is becoming as he appears, another citizen in the community.

These are but small examples of how a change of thinking and intentional steps by companions sharing living in typical ways, do make a difference in peoples lives. Now you notice their faces and begin to wonder, how else are we alike?

Our offices in Atlanta, Albany, Rome, Savannah, Columbus and Athens are expanding services in and around these cities for all MHDDAD regions. For information on our program or to refer Medicaid Waiver Personal Supports Recipients to our program, please call 404-591-7044 and speak to Julia Bowen.

The following information is from the front page of their website. It is worth logging into and signing up. You can view your medicaid status, bills, etc. plus so much more at https://www.ghp.georgia.gov/wps/portal.

Georgia Health Partnership (GHP) is a state-of-the-art electronic health care administration system that gives patients, doctors, pharmacists and other providers easy, secure and efficient access to health care information.

Georgia Healthy Families

To assist you with the launch of this important new health care program, the following resources are available to you:

1) The Georgia Healthy Families website, at www.gahealthyfamilies.com, contains information on the health plans and who must enroll at this time.

2) The GHP Portal (this website) provides a description of the program and instructions on how to contact the Georgia Healthy Families managed care organizations. Click on the Member Information tab and follow the links to Georgia Healthy Families to view this information.

3) If you are a provider, you may contact the managed care organizations at the following numbers:

Amerigroup 800-454-3730
Peach State 866-874-0633
WellCare 866-231-1821

4) If you are a Georgia Medicaid Member, you may contact the managed care organizations at the following numbers:

Amerigroup 800-600-4441
Peach State 800-704-1484
WellCare 866-231-1821

Planning for Children with Special Needs

MetDESK®, MetLife's Division of Estate Planning for Special Kids helps you to take steps to provide lifetime quality care that your child or dependent with special needs requires.

On this site they provide free personalized assistance, special needs calculator and other important resources.
http://www.metlife.com/Applications/Corporate/WPS/CDA/PageGenerator/0,4132,P475,00.html

This is an excellent website to gather information on all areas of special needs in Georgia. Definitely a "First Stop".

First Stop is www.parenttoparentofga.org/roadmap.

Leaving off the /roadmap will take you to the home page for the Parent to Parent of Georgia where there is also a link. The two websites work well together.

Applications are being accepted until December 1, 2006 for U.S. applicants.

Visit http://vsarts.org/x22.xml for more information or call 1-800-933-8721.

Applications can also be received by contacting Elizabeth Labbe-Webb at 404-221-1270 x 207 or Elizabeth.labbe-webb@VSAartsGA.org after reviewing the guidelines and eligibility on the web.

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.

http://cdrc.ohsu.edu/oscshn1/medicalhome/docs/cp.pdf

http://www.ideallives.com/

Here is information from this site's home page to see if it is of interest to you...

Genomics.energy.gov which also contains information on the Human Genome Project, Genomics:GTL and Microbial Genome Program has information on different clinical trial resources and guidelines at http://www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/diseaseindex.shtml#trials.

The Department of Community Health is responsible for establishing procedures and policies in regards to payment of Medicaid including Katie Beckett Waiver. It establishes what paperwork must be submitted by therapists in order to receive payment. They approve the number of therapies to be provided as well as address related provider concerns.

The person to contact at DCH is:

Warren McNeill
wmcneill@dch.ga.gov
404-651-9974

To speak directly to someone regarding Medicaid eligibility issues or concerns contact:

Mr. Brian Dowd
bddowd@dhr.state.ga.us
404-657-3596

David Ring is very inspirational to me. He has cerebral palsy but doesn't let it stop him. He has a wonderful family and a speaking career. To learn more about his story visit www.davidring.org.

David Ring Ministries
PO Box 682286
Franklin, TN 37068
615-591-6221

Visit http://concretechange.org/ to learn more about making every home visit-able by everyone which includes larger doorways on main floor, entrance and bathrooms on the main floor that are accessible.