Florida Resources

Family Empowerment Representatives | Treatment and Research Centers | FL 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

Nikki Johnson, volunteer Family Empowerment Representative, Milton  nikkij02@att.net1-850-686-5208

Karli Hughes, volunteer Family Empowerment Representative, Lakeland   kghughes26@aol.com1-863-899-0784


Treatment and Research Centers


Clinical Sites 

None at this time


 State Agencies - Florida


Local Service Agencies

Florida Developmental Disabilities Council (FDDC)

The council was established to help plan individual and family-centered supports for persons with disabilities. FDDC is a non-profit organization that receives federal assistance. They have an array of materials on topics ranging from inclusive early education to supported living and employment programs.

Agency for Persons with Disabilities (APD)

APD works with local communities and private providers to assist people who have developmental disabilities and their families. APD also provides assistance in identifying helpful supports and services.

Family Care Council Florida (FCCF)

The purpose of the FCCF is to advocate, educate, and empower individuals with developmental disabilities and their families. They partner with the Agency for Persons with Disabilities (APD) to bring quality services to individuals.

Act4Me

1-786-457-2993

Act4Me provides funding to children with neurological disabilities and disorders (including Rett Syndrome) for speech, occupational, and physical therapy.  Their target population are families that are uninsured or families with private insurance but insufficient coverage. They also provide grants for undocumented families who do not receive Medicaid or other government support. They also accept grant applications for Home Therapy Supplies such as, (but not limited to) wheelchairs, walkers, hearing, and speaking equipment.


Handicap Placard

Florida HSMV

1-850-617-2000

The HSMV issues disabled parking permits. You must submit the application form, signed by a physician within the last 12 months, to your local tax collector's office with appropriate payment. Also bring a copy of your Florida driver license or Florida identification card.  


State Medicaid 

iBudget Florida

1-866-APD-CARES

iBudget is the Medicaid Waiver program for persons with developmental disabilities. It is how the Agency for Persons with Disabilities manages the Medicaid waiver system. It gives APD customers more control and flexibility to choose services that are important to them, while helping the agency to stay within its Medicaid waiver appropriation. Online application available. Email: APD.iBudget.Contacts@apdcares.org  

Statewide Medicaid Managed Care (SMMC)-Managed Medical Assistance Program

1-877-711-3662

There are two different parts that make up the SMMC program, the Managed Medical Assistance (MMA) Program and the Long-Term Care (LTC) Program. Medicaid recipients who qualify and become enrolled in MMA will receive all health care services (other than long-term care) from a managed care plan. Medicaid recipients who qualify and become enrolled in LTC will receive those from a Long Term Care managed care plan. Plan explanations and enrollment available online. 

Consumer Directed Care Plus (CDC+)

1-866-761-7043

CDC+is an alternative to iBudget which gives the consumer the opportunity to hire workers and vendors directly. Paid workers may even be family members or friends.

Florida Medicaid Waivers

Florida currently has four HCBS 1915(c) waiversthat are open to children. Three of these waive parental income; we do not know the status of the fourth. KidsWaivers.org has an overview of the programs.


Early Intervention

Early Steps

1-850-245-4200

Early Steps is Florida's early intervention system that offers services to eligible infants and toddlers (birth to 36months) with significant delays or a condition likely to result in a developmental delay.  Email CMS.EarlyStepsPublicComment@flhealth.gov. or call Kelly Rogers for more information

Early Steps Directory

This directory contains statewide information and resources for parents or caregivers of children with diagnosed or suspected developmental delay or disability from birth to three years of age.


Education

Bureau of Exceptional Education and Student Services

This department administers programs for students with disabilities.

Florida Department of Education

The Bureau of Exceptional Education and Student Services provides information about exceptional student education, student services, juvenile justice education, early intervention, parent and professional partnerships, and many other topics.

Bureau of Exceptional Education and Student Services(BEESS)

BEESS lists local Exceptional Student Education contact information. 


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency is appointed by a court to be responsible for a person who needs assistance in activities of daily living. This process should be started approximately 6 months before the 18th birthday.

Florida Courts

Florida courts provide information on guardianship/conservatorship.

PowerofAttorney.com

PowerofAttorney.com offers online resources, forms and assistance.


Transition to Adult Services

Family Network on Disabilities

  1-800- 825-5736

This group created the Transition Tool Kit. In it, you will find information related to transitioning from high school life to adulthood, including articles, videos and web links.fnd@fndusa.org

Vocational Rehabilitation

VR is a federal-state program that helps people who have physical or mental disabilities get or keep a job.


Parent Recommendations

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


 Medical Professionals

Dr. Donald George

1-904- 697-3600

Dr. George isDivision Chief ofthe Pediatric Gastroenterology Clinic at Nemours Childrens Specialty Care in Jacksonville.  

Dr. Frank Sierra

1-813-889-0780

Dr Sierra is a Pediatric Dentist in Tampa. 

All Children's Hospital

1-800-456-4543

Dr. Cassandante, Neurologist and Dr Hahn, Orthopaedist and Jennifer Ferreira , Speech Pathology 

ClinicalTrials.gov

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

Child Neurology Center of NW Florida

Dr. Nicole Lawrence

Dr. Nicole Lawrence is a Pediatric Gastroenterologist with Nemours in Pensacola.

Dr. James Ben Renfroe

 1-850-932-5055 

Dr. Renfroe is a Pediatric Neurologist at the Child Neurology Center in Pensacola.

Dr. Richard Reynolds

 1-859-505-4720 

Dr. Reynolds is an Orthopedic specialist at Nemours in Pensacola. 

Dr. Ronald G Davis

 1-407-293-1122 

Dr. Davis leads the Pediatric Epilepsy Center of Central Florida in Orlando.


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

 Jennifer Ferreira & Daniel Dardiz

1-321-438-7226

Both are certified CCC-SLP at All Children's Hospital 

Pediatric Therapy Center of NWFL

Pediatric Therapy Center of NWFL  provides of occupational, physical and speech therapy to children from birth to twenty one years of age.

Children's Hospital at Sacred Heart

1-850-416-7340

Children's Hospital at Sacred Heart offers pediatric rehabilitation services including speech, physical and occupational rehab. They have several locations across the gulf coast.   

 


Legal Resources

Disability Rights Florida

Disability Rights Florida assists any Floridians with disability-related issues, including legal services.

Bradenton Law Office

Bradenton Law Office offers an excellent explanation of guardianship vs conservatorship.


Recreation

Florida Disabled Outdoors Association (FDOA)

The FDOA is a non-profit organization working to enrich lives through accessible inclusive recreation. 

Visit Florida

Visit Florida lists events, activities and resources for those with special needs.


More Parent Recommendations

Special Needs Resource Project (SNRP)

SNRP provides a basic guide for parents of children with chronic health issues, disabilities and special needs. This site is designed to help you get a jump-start in your search for helpful information and resources. Every situation is unique. Their aim is to help you learn the basic skills you'll need to obtain the specific resource information, equipment, and services your child needs. Though focused on children ages 0-22, most of the information offered is applicable to adults as well.

Children's Medical Services (CMS)

CMS is a collection of programs for eligible children with special needs. The programs and services are family-centered and designed to help children with a variety of conditions and needs.

Camp Boggy Creek

Camp Boggy Creek is a member of SeriousFun Children's Network. Founded by Paul Newman, SeriousFun is a global community of independently managed and financed camps and programs creating opportunities for children with serious illnesses and their families to reach beyond illness and discover joy, confidence and a new world of possibilities, always free of charge.

Deliver the Dream

Deliver the Dream helps families experiencing a serious illness by organizing monthly three-day, two-night retreats. Each family that attends has a family member - whether it’s a child or parent – living with an illness such as cancer, autism, a blood disorder, spina bifida or multiple sclerosis. The program invites up to 15 families, free of charge, to one of our retreat locations so they can relax, enjoy time together, forge new friendships and create support groups with the other families dealing with the same illness.

Center for Autism & Related Disabilities (CARD)

CARD located at USF is a community-based project that provides information and consultation to individuals diagnosed with autism spectrum disorders and related disabilities. CARD-USF offers instruction and coaching to families and professionals.  1-813-974-2532

Buddy Break

Buddy Break was created to provide respite care for families with little or no support system to give them a break when they need it the most. Buddy Break gives parents that break, while allowing people to get involved by being a Buddy friend to a child.

Special Olympics 1-863-815-6671

UpWard Sports

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