Florida Senator's Offices
Senator Bill Nelson
Senator Nelson’s office can help if you have a problem dealing with a federal agency, including, but not limited to Medicare, Social Security, veterans’ benefits and travel visas. To effectively and efficiently work on your request, complete and sign the consent for release of information form, provide a detailed account of the problem and describe any actions already taken. Include copies of all documentation that support your claim or may be helpful, such as letters to and from agencies as well as medical or other forms. Mail or fax all materials to Senator Nelson’s Orlando office. If your problem is life-threatening, call (407) 872-7161 or (888) 671-4091 or fax a completed consent form to 407-872-7165 during business hours (Monday-Friday; 8:00am-5:00pm).
Senator Mel Martinez
Click here for Constituent Case Work information.
Senator Martinez' office can help you with issues with a federal agency. He has offices in several parts of the state. Click here to check an office in your area.
Upcoming Community Office Hours For North Florida
July 17th & 18th, caseworkers from the Office of Senator Martinez will visit Gadsden, Leon, Wakulla, Jefferson, Madison, and Hamilton counties. Caseworkers will be available to assist constituents with concerns and issues ranging from Veterans issues to Healthcare, Social Security, Medicare, and other services provided by the federal government.
Click here to view the locations and times.
Governmental Resources
Federal
www.cdc.gov - The Centers for Disease Control and Prevention
To go to the CDC’s CFS SPARK campaign web site, click here
Social Security Online- Main web site.
Search for your local Social Security Office
Quick tip:
The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program.
pays benefits to you and certain members of your family if you are "insured," meaning that you worked long enough and paid Social Security taxes.
Supplemental Security Income pays benefits based on financial need.
When you apply for either program, we will collect medical and other information from you and make a decision about whether or not you meet Social Security's definition of disability.
Medicare Web Site Information - Department of Health and Human Services.
Medicare Prescription Drug Plans by State for 2007
Florida State
Cash & Counseling
New program now available in several states including Florida, based on a research grant study provided by the Robert Wood Johnson Foundation. The program entails the expansion of a proven model of consumer-directed supportive services to more states, allowing thousands more older adults and people with disabilities to have choice and control over the care they receive.
Clicke here for the program information in Florida
Program Overview
The “Cash & Counseling Model” Vision Statement
The Cash & Counseling service model is a form of consumer-direction or self-direction intended to empower individuals to make choices and take control of the community support services that they receive. The goal of the model is to enhance their ability to live the life they wish to in the community. This vision evolved from a tested model which yielded very positive results. Cash & Counseling seeks to create a new model through the inclusion of principles that go beyond what is already possible. The following principles are essential to the Cash & Counseling model.
- Cash & Counseling reflects a belief that individuals, when given the opportunity to choose the services they will receive and to direct some (or all) of them, will exercise their choice in ways that maximize their quality of life.
- Cash & Counseling is one option among several service delivery models but it should be available for all participants that choose it.
- Because participation in Cash & Counseling is voluntary, there should be a seamless process for moving between this option and the traditional system.
- Consumer-direction is not used as a vehicle for reducing benefits to recipients.
- Cash & Counseling includes participant-centered-planning to ensure that the participant is making personal choices for the spending of the budget based on his or her own goals.
- Cash & Counseling requires a flexible individualized budget that the participant may spend on services that assist the individual to meet his/her community support needs and enhance his/her ability to live in the community.
- The participant may use the individualized budget to choose and directly hire workers to provide the services.
- The participant may use the individualized budget to purchase goods, supplies or items to meet community support needs.
- A flexible budget means the participant has significant choice in the allocation of their funds between hiring workers and making other purchases.
- Cash & Counseling allows participants to select a representative to help them with making decisions and managing their services.
- Cash & Counseling provides a system of supports to assist the participant in developing and managing his/her spending plan; fulfill the responsibilities of an employer, including managing payroll for workers he/she hires directly; and obtain and pay for other services and goods.
- Cash & Counseling obtains feedback from participants, representatives, and family members (when appropriate) as well as data from support service providers to continuously improve the program.
Ideally the fully flexible budget would allow the participant to hire legally responsible relatives, purchase goods and services from vendors without Medicaid provider agreements, and receive some part of the budget in cash. To read the complete vision statement go to or type the following link on your web browser
http://www.cashandcounseling.org/about/index_html
Links For Non Profit Organizations and other resources
The Rocky Mountain CFIDS/FMS Association -
Their mission is to promote and conduct activities which further education, support, awareness, advocacy and research for Chronic Fatigue Syndrome and Fibromyalgia. Current president Mike Munoz, participated in our Advocate Extraordinaire program in 2007 during the 8th IACFS Conference in Fort Lauderdale.
Massachusets CFIDS Association - The oldest CFS/CFIDS/ME Association in the U.S. by Bonnie Gorman. They have an extensive state network of support groups, provider's education and they have been a strong force in the advocacy movement.
Patient Assistance Program - Partnership for Prescription Assistance is the web site where patients, caregivers, and prescribers can find the information, forms that can be filed electronically and the list of available prescription drugs under the financial assistance program for individuals who don't have health insurance or receive any or limited assistance from the government.
A Health Handbook for Women with Disabilities from the Hisperian Foundation - A non-profit publisher of books and educational materials that help people take the lead in their own health care and organize to improve health conditions in their communities. Simply written, heavily illustrated, and developed in collaboration with groups around the world, our books contain a wealth of life-saving information on diagnosing and treating a broad range of health problems.
National Alliance for Myalgic Encephalomyelitis - California, U.S. - The organization
was established to address the issues of recognition and definition, and to raise awareness of this devastating neuroimmune disease that has afflicted nearly a million people in the U.S. and millions worldwide. They have a web site with amazing graphics.
National
Fibromyalgia Association, California, US - Previously known as the National
Fibromyalgia Awareness Campaign) is a 501 c 3, non profit organization
whose mission is to develop and execute programs dedicated to
improving the quality of life for people with Fibromyalgia by
increasing the awareness of the public, media government and medical
communities.
Click here
for information on the Fibromyalgia Support Group on Ottawa, Canada
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The Oregon Fibromyalgia Foundation-
The Oregon Fibromyalgia Foundation, a non profit organization,
(OFF) was started in 1995 by Prof. Robert Bennett and Dr. Sharon
Clark and their colleagues from Oregon Health & Science University
( OHSU ) in Portland, Oregon.
Dr. Robert Bennett was our key note speaker for Fibromyalgia at
our 2004 Annual Neuroendocrineimmune Disorders Inspiring
Hope Through Awareness™ and so was Dr. Sharon Clark
who presented on the benefits of Exercise for FM patients.
www.cfids.org - The
CFIDS Association of America is the largest and most active 501(c)(3)
charitable organization dedicated to conquering chronic fatigue
and immune dysfunction syndrome (CFIDS, also widely known as chronic
fatigue syndrome or CFS). Since its founding in 1987, the Association
has invested over $16.4 million in support efforts to bring an
end to the pain, disability and suffering caused by CFIDS.
The CFIDS Association is currently is promoting the national education campaign called Spark - "The first national public awareness campaign on chronic fatigue syndrome was launched June 7, 2006. This multifaceted $4 million campaign is designed to educate both the general public and health care professionals about CFS. The campaign will extend through 2007.
Primary funding for the campaign has been provided by the Centers for Disease Control and Prevention (CDC). The funding came from the health marketing arm of the CDC, leaving their CFS research budget intact. The CFIDS Association of America was selected as the contractor to implement the campaign.
The campaign delivers vital information about who is at risk for CFS, the symptoms of the illness, treatment and management options, the importance of seeking diagnosis and treatment, and the impact of CFS illness on both patients and family members.
This campaign will ignite interest in CFS and spark increased understanding about the illness among the general public, health care professionals, legislators and the media. The campaign also has the potential to increase research funding for CFS from federal, biotech and pharmaceutical sources over the next decade. To go to the CDC’s CFS and campaign web site, click here
CFIDS Report -
News and Commentary for the CFS community- Craig Maupin is the
editor of a very informative web site. His four part series depicting
the inner works of the DHHS, CDC, NIH and their relationship to
CFS is excellent. His latest interview was with Dr. Vivian Pinn,
head of the Office of Research on Women's Health (ORWH) at the
National Institutes of Health (NIH). The last article on this
series is The
NIH and CFS - Advocate's Concerns - Advocate's Concerns about
the response to CFS have varied from low funding to alleged bias.
Part 4 of the series looks at some of the history behind the concerns
of the CFS community. This is required reading if you are CFS
patient advocate.
Dr. David S. Bell - Well known CFS physician, former Chairman of the Chronic Fatigue Syndrome
Advisory Committee (CFSAC).
International Association for
Chronic Fatigue Syndrome - Medical professional association
dedicated to foster research and treatments for chronic fatigue
syndrome, fibromyalgia, gulf war syndrome and related illnesses.
Current President is Dr. Nancy Klimas. P.A.N.D.O.R.A. is the host
organization for their upcoming 2007 International Conference
from January 10-14, 2007 at the Bahia Mar in Ft. Lauderdale, Florida.
Make sure you attend what it promises to be a great gathering
of researchers, advocates and physicians from all corners of the world.
Social
Security Disability Coalition - Web site outlining Social
Security much needed reform. A good source of information if you
are seeking disability benefits under Social Security.
Wisconsin CFS Association - Madison, Wisconsin, U.S. - Strong state organization, whose purpose is to act as a clearinghouse
for CFS information within the state of Wisconsin; to assist patients
and their families; to encourage communication among agencies,
institutions and concerned individuals; and to promote research
on the cause, cure, and ultimate prevention of chronic fatigue
syndrome.
CFCCC -
Chicago, Illinois, U.S. - Chronic Fatigue Syndrome, Fibromyalgia, Chemical Sensitivity Chicago
Coalition, Inc. is organized for the purposes of support, education,
and advocacy for persons with chronic fatigue syndrome, fibromyalgia,
and chemical sensitivity.
The
Vermont CFIDS Association, Inc- Vermont, U.S. - This strong state
organization newest project, which they recently succeeded, is to push for a bill to create
in the state legislature a Physician/Patient Manual for CFS and
related illnesses, similar to the New Jersey CFS Association bill.
Fibromyalgia
Support Group for Surrey and Sussex - England - Web
site of the Fibromyalgia Support Group for Surrey and Sussex in
England. Joe Fischer is the founder and coordinator of a 300 (and
growing) group membership. Yvette Taylor's, our editor, had her hilarious article Living with Fibro and trying to Laughpublished on their web site too. Joe has also received in 2006 the Leader Against Pain award from the National Fibromyalgia Association.
OFFER - Utah, U.S..- Organization for Fatigue & Fibromyalgia Education and Research. Their mission is: Network and improve community resources for patients with chronic fatigue syndrome (CFS) and fibromyalgia (FMS);Educate medical providers, patients, and the general public; Advocate on behalf of patients and Research into the cause, diagnosis and treatment of CFS and FM. (I like that the first letter of each item in their missions spells NEAR. They have much to OFFER and a solution is NEAR.)
Axford's
Abode - In-depth issues and Information on
ME/CFS in England.
NAME -
The National Alliance for Myalgic Encephalomyelitis was established to address the issues of recognition and definition, and to raise awareness of this devastating neuroimmune disease that has afflicted nearly a million people in the U.S. and millions worldwide.
AFFTER - Advocates for Fibromyalgia Funding, Treatment, Education and Research) is a not for profit organization run by volunteers, most of who have fibromyalgia (FMS). They have a solid organization in place with a professional Board of Directors and a strong Medical Advisory Committee, including nationally and internationally known researchers.
Total Newsletter - Knoxville, Tennessee - This newsletter and the web site is through the support of Patricia Goleach, owner of the Total Rehab Physical Therapy. She supports local support group meeting for individuals with CFS, FM, MPS, chronic pain and other related illnesses.
The New Jersey CFS Association - New Jersey, U.S. - Strong state association that has a strong advocacy model on CFS pediatrics issues. They are among the few organizations that provide financial educational scholarships to young people diagnosed with CFS and to medical students who have demonstrated the interest to specialize and or learn about CFS in their medical curriculum.
Our CFS/FM World, Inc. -Chino Valley, Arizona, U.S. - They are a nonprofit organization maintained by sufferers of Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome. Our Mission is to improve the quality of life for fellow sufferers, while increasing public, governmental and medical awareness of these diseases. We are grateful to them for supporting our advocacy efforts in Florida and nationwide.
The De Paul University, Chronic Illness Initiative program needs our support. Please give generously and earmark your financial donation for CFS, FM, GWS, MCS, Lyme Disease, Lupus or any other related illness of your choice.
CFS/ME/FM PROFESSIONAL ORGANIZATIONS
International Association for Chronic Fatigue Syndrome
Medical professional association
dedicated to foster research and treatments for chronic fatigue
syndrome, fibromyalgia, gulf war syndrome and related illnesses.
Current President is Dr. Nancy Klimas. P.A.N.D.O.R.A. and the CDC sponsored their 2007 international conference in Fort Lauderdale, Florida and P.A.N.D.O.R.A. was also the host organization. Researchers and physicians from 21 countries attended and presented at this outstanding conference. advocates from the U.S. and from other countries also attended the patient conference and participated in the Advocates Extraordinaire!© Advocacy and Leadership training sponsored by Purdue Pharma, Marc Iverson, Pro-Health,Inc, the HHV-6 Foundation, BioEnergy Labs, Frankel and Newfield, The Langord Life Lyme Foundation and many more!
Click here for complete ongoing updated post-information on this great event It is being touted as one of the best conference the CFS community has ever had and the lartgest one for the IACFS and for P.A.N.D.O.R.A. You better be ready for the next one!
BLOGGERS
Agent for Change is the blog of the founder of P.A.N.D.O.R.A.- Marly Silverman. She will share her personal insight on issues that affect the CFS-ME, FM, GWI, and MCS and related illnesses community.
Check the blog of Craig J. Phillips, a traumatic brain injury (TBI) survivor who despite all odds against him has accomplished an incredible journey. Phillips's writings demonstrate a strong spiritual connection to G-d. His personal experiences are translated to his writings and to his purpose of leading a fulfilling and thriving life.
You have to check the new web site of ChronicBabe.com
Jennifer Prokopy is the brains behind the web site and her blog. At PANDORA, we are all CFS/FibroBabes! Jenny has one of the most amazing dispositions towards life and towards her new career. You have to read one of her latest articles that was posted on Young People For... It is titled "One Woman's negativity is another woman's empowerment". Jenny's has found a very creative way to re-invent herself and to encourage others to do the same when faced with a life long invisible, and so far without a cure type of illness - Fibromyalgia.
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