Dysautonomia
Foundation, Inc.
A non-profit
organization supporting medical research
and treatment for people with Familial Dysautonomia
New Legislation in Florida Provides
Financial Resources for FD Patients
The Familial Dysautonomia Home and Community-Based Services Waiver was recently passed through Florida legislation. This legislation entitles all FD patients residing in the state of Florida, regardless of age or family income, to receive a multitude of medically necessary services that allow for improved quality of life.
This legislation was initiated and then passed through the enormous and persistent efforts of Mrs. Sandra Mallow, and she deserves accolades for her advocacy. Dr. Felicia Axelrod, Director of the Dysautonomia Treatment and Evaluation Center, provided statistics and then contacted by letter or telephone those legislators that Mrs. Mallow targeted as potentially helpful in executing this legislation.
In order to promote this initiative, the Dysautonomia Foundation’s social service coordinator has facilitated outreach to all FD families across the state of Florida in an effort to create awareness and assist with the enrollment process. All waiver services are limited to an annual total amount of $20,900. This amount is provided per family. Funds allotted through this waiver will cover the following service expenses:
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Case Management
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Respite Services
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Consumable Medical Supplies (enteral formulas and feeding tubes)
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Durable Medical Equipment (wheelchairs and rolling walkers)
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Behavioral Services
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Dental Services
If you are a resident of Florida and are interested in obtaining support through this home and community-based waiver model please contact:
Mrs. Pamela Wainwright
Medicaid Services Program Analyst
Agency for Health Care Administration
Bureau of Medicaid Services
2727 Mahan Drive, Mail Stop 20 Tallahassee, Florida 32308
(850) 921-4464 Fax: (850) 414-1721
Or
Philip Giarraffa, LMSW, MPH
Social Services Coordinator
Dysautonomia Foundation, Inc
(718) 436-3171
The passing of this legislation in the state of Florida illustrates that advocacy can produce tangible and important gains for FD patients. We hope that this will encourage the entire FD community to work together to obtain similar legislation in other states to improve quality of life for all of our loved ones.