Georgia Resources

Family Empowerment Representatives | Treatment and Research Centers | GA State Agencies | Parent Recommendations


Family Empowerment Representatives


Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome.  Contacting them should be your first step.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388

Ashleigh Rivera, volunteer Family Empowerment Representative, ashr.rettsyndrome@gmail.com  1-678-294-5528


Treatment and Research Centers


Clinics

Emory University Hospital

1-404-785-4783

Emory University Hospital's Pediatric Neurology Program is committed to providing quality comprehensive care to children with mild to complex neurological disorders.  For appointments, contact Larsche Reaves, Pediatric Neurology Practice.

Rett Syndrome and MECP2-related Disorders Clinic

1-617-984-9091 Office  1-617-328-3968 Fax  1-207-590-6945 Mobile

Center for Rare Neurological Disorders:  5600 Oakbrook Parkway, Suite 120, Norcross, GA 30093

Email: daniel@rareneuro.com

Contact Jennifer Harris, Neurology Nurse Practitioner, for an appointment - jennifer@rareneuro.com


 State Agencies - Georgia


Local Service Agencies

Children's Medical Services (CMS)

1-404-657-4855

CMS is a state and federally funded program which provides community-based, family-focused, care coordinated, culturally appropriate, comprehensive system of medical care for eligible children, birth to 21, with chronic medical conditions. CMS District Locations will be your beginning point of contact. 

Children and Youth with Special Healthcare Needs (CYSHN)

1-404-657-2850

The CYSHN program's goal is to provide resources to Georgia's 18 Health Districts in the development of a comprehensive system of services for children and youth with special needs, birth to age 21 and their families. CYSHN services include Early Intervention (BCW) and CMS. 

Parent to Parent of Georgia

1-800-229-2038

Georgia Council on Developmental Disabilities (GCDD) considers Parent to Parent of Georgia to be the “first stop" for parents seeking resources. Parent to Parent is developing Navigator Teams, comprised of experienced parents who work with the expert staff to help guide families to the resources they need. Check with Parent to Parent to see if there is a navigator team in your county. 

Children 1st

1-404-657-2850

Children 1st is designed to serve as an entry point into all public health services for children, birth to 5 years old. Children 1st facilitates early identification of at-risk children and links them with early intervention services, other public health services and community based resources. 


Handicap Placard

Georgia DOR 

The DOR issues disabled plates and permits. You can apply in person from your county tag office. You will need a completed Disabled Persons Parking Affidavit signed by a physician. Handicap placards are valid for 4 years. Check with your local DOR office for renewal requirements.


State Medicaid 

TEFRA/Katie Beckett Medicaid Waiver

1-678-248-7449

This waiver provides services for children up to age 18 who would otherwise not qualify for Medicaid. To apply, call or pick up an application at your county Division of Family and Children Services (DFCS) office. 

DFCS County Offices

1-330-794-6574

Service Options Using Resources in a Community Environment (SOURCE)

1-404-463-6570

The SOURCE program works to improve the health outcomes of persons with chronic health conditions by linking primary medical care with home and community-based services through case management agencies. The Georgia Department of Community Health’s (DCH) Aging and Special Populations Unit administers SOURCE. To apply, contact your county office. 

County SOURCE numbers

New Options Waiver (NOW)

The NOW waiver program offers services and supports to individuals to enable them to remain living in their own or family home and participate or live independently in the community. Georgia has 10,000+ on waiting lists. NOW Application and FAQ's are on the website.

Comprehensive Supports Waiver Program (COMP)

The COMP waiver primarily provides residential care for individuals with ID/DD. These individuals require comprehensive and intensive services and need out-of-home residential support and supervision or intensive levels of in-home services. For general NOW-COMP questions, you can email  Questions@dhr.state.ga.us.


Early Intervention

Babies Can't Wait( BCW)

1-404-657-2850

The BCW program is offered through the Georgia Department of Public Health. It provides a comprehensive, integrated system for infants and toddlers, up to age 3. 

Early Intervention Program (EIP)

1-404-463-0934

The Georgia Department of Education's EIP program is designed to serve students who are at risk of not reaching or maintaining academic grade level. EIP provides additional instructional resources to help students who are performing below grade level obtain the necessary academic skills to reach grade level performance in the shortest possible time. 


Education

Division for Special Education Services and Supports

1-404-656-3963

Georgia Department of Special Education, Division for Special Education Services and Supports includes programs and services that support local school districts in their efforts to provide special education and related services to students with disabilities.


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

Division of Aging Services Georgia

DHS has information about conservatorship in Georgia. This process should be started approximately 6 months before the 18th birthday.

Guide on Conservatorship

Georgia Department of Education offers a guide on conservatorship in Georgia.

Georgia Probate Court

The judicial branch of Georgia has information on conservatorship.


Transition to Adult Services

Georgia Department of Education

1-800-311-3627

The DOE has links to assist with Transition Planning. Transition requires support from multiple sources for the student and family to make choices, develop connections, and access services. Planning should begin no later than with the first IEP to be in effect when the student begins ninth grade or turns 16 (or younger if determined appropriate by the IEP team). 

Georgia Partnership for Ensuring Adolescent Comprehensive Heatlhcare Transition (GA PEACH-T)

1-404-657-2850

 The PEACH-T website provides information on transitioning youth from pediatric to adult care. 


Parent Recommendations

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org


 Medical Professionals

ClinicalTrials.gov

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.

 

Dr Daniel Tarquinio

1-617-984-9091 Office  1-617-328-3968 Fax  1-207-590-6945 Mobile

5600 Oakbrook Parkway, Suite 120

Norcross, GA 30093

Email: daniel@rareneuro.com

Contact Jennifer Harris, Neurology Nurse Practitioner, for an appointment - jennifer@rareneuro.com


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)


Legal Resources


Recreation

Six Flags Over Georgia

Wild Adventures Theme Park

Tybee Beach

Tybee Beach supplies mobi-mats at several locations for  hassle-free handicap access. Mobi-mats are located at: Gulick Street, East Gate (2nd Street & Solomon) and 18th Street. Limited wheelchairs are also available at the lifeguard trailer at Tybee Island Marine Science Center behind the Pier.

Georgia Wheelchair Accessible Trails


More Parent Recommendations

Georgia rettsyndrome.org Families Facebook

This page is private, click and ask to join.

Purple Ribbon Mobility

1-678-572-4410

Purple Ribbon Mobility offers brand new wheelchair conversions on  gently used Dodge Grand Caravan or Toyota Sienna mini-vans. They can convert your Dodge Grand Caravan or Toyota Sienna to be Wheelchair Accessible at a cost that is thousands less  and with fewer restrictions on age and mileage of the van than traditional conversions.  Located in Georgia, providing services throughout  the southeast.  purpleribbonmobility@gmail.com