Lupus and Social Security Disability in DC/MD/VA
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Lupus and Social Security Disability in DC/MD/VA
Penelope C. Fletcher President & CEO
Lupus Foundation of America,DC/MD/VA/Chapter, Inc.
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Mission We are dedicated to finding the causes of
and cure for lupus and providing support and services to all people affected by lupus.
Our chapter is the only organization providing services to those living with lupus in the District of Columbia, Maryland, and Central and Northern Virginia. We offer current information, education programs, support groups, and personalized help with the questions that arise for those living with lupus and their family and friends. We also support research and promote lupus awareness.
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What is Lupus? Lupus is a chronic autoimmune disease
that can damage any part of the body.
With autoimmune diseases, the body cannot tell the difference between “invaders” (i.e., bacteria and viruses) and the body’s own healthy tissues.
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Lupus Is… Different for each person A disease that ranges from mild to life threatening Characterized by flares and remissions Unpredictable A disease that throws the immune system out of balance, harming any organ in the body
Our vision is a world without lupus. Our vision is a world without lupus.
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History of LFA – DC/MD/VA Chapter Founded in 1974 Our mission has always been one of service
and education. We exist to help the patient and their family navigate through the healthcare system.
We provide workshops and symposia throughout DC / MD / VA and teleconferences that carry our education throughout DC and both states.
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LFA-DC/MD/VA and Disability Issues In 2008 we realized that we needed to
expand our horizons beyond health education to include disabilities and job accommodations
We now do 3 or 4 in-person workshops and 1 or 2 teleconferences on disability issues each year. These have become our most popular workshops
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LFA-DMV’s Role with Disability and Job Accommodation Questions Our patient navigators are trained to help
patients understand the disability system and the need for job accommodation
We try to help our lupus patients understand when to seek disability and how to seek disability
Unfortunately, too often people seek help and advice when they have already been turned down once or twice
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Patient Services Two Symposia Annually – D.C. and Baltimore
• Comprehensive events that cover a variety of topics and the latest advances in lupus
16 Monthly Support Groups throughout the DC/MD/VA Area• Offer lupus patients and their families the opportunity to connect
with others and get emotional support 25 Workshops Annually
• Throughout our geographic area• On both general and specific lupus topics (Living with Lupus,
Lupus and Disabilities, Kidneys, Cognitive Disorders, Heart, etc.)
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Patient Services Lupus Educational Workshops
• Provide patients up-to-date and accurate information on managing lupus
• Topics range from Disability, Coping with Lupus, Financial Considerations when Living with Lupus
Teleconference Series • Allows individuals affected by lupus to access
pertinent information on managing lupus
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Patient Services Weekly E-Newsletter 3 Annual Walks for Lupus Now!
– DC Walk For Lupus Now! – April 16– Baltimore Walk For Lupus Now! – September 24 – Richmond Walk For Lupus Now! – October 29
Community Outreach Promotion of Lupus Awareness through
100 Health fairs per year
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Patient Services Quality of Life Program
• Offers small emergency grants for medical and financial crisis
One-on-One Support through Patient Navigation• Patient Navigators work with lupus patients
individually to improve access to adequate health care
– Physician Referrals
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Advocacy & Awareness National Lupus Advocacy & Awareness Day
• Capitol Hill – March 1, 2011 Virginia Lupus Advocacy & Awareness Day
• Richmond, VA – February 2, 2011 Health Fairs Walk for Lupus Now!
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Treatment & Research Avenues
Refer interested lupus patients to clinical trials in the area
Informing them of the Lupus Foundation of America’s Research Program• Providing funds for clinical research
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Disability Navigation We educate enquirers on the SSA
disability application process • What to expect• Average length of process
Referral Process• Social Worker• Local SSA Offices• Legal Representation
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Organ Systems Affected by Lupus – as reported by our Patients Seeking Disability
0
50
100
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Lupus Symptoms Affecting Our Patient’s Ability to Work That Lead Them to Seek Disability
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Why do lupus patients apply for disability?
Chronic Fatigue and Pain render them unable to work a 40 hour week
They suffer From Range of Cognitive & Physical Issues• Memory loss • Difficulty Completing Familiar Tasks• Lack of Coordination • Inability to Multi-Task• Frequent Loss of Balance
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The Difficulties of Assessing Lupus Patients for Disability These Issues are often the most difficult to
quantify for severity and impact on the ability to work• Chronic fatigue is difficult to understand. It is a
level of tiredness that is not overcome by 9 or 10 hours of sleep
• Chronic pain occurs at a level that is debilitating, but that cannot be assessed by a casual observer
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The Difficulties of Assessing Lupus Patients for Disability Cognitive issues cannot be seen The problems that lead our patients to seek
disability are most difficult for them to convey • Confusion and disorientation are often brought on by the
stress of the workplace and may not be in evidence at all times
• Difficulty completing tasks, memory loss, inability to multi-task – the person suffering from these cognitive issues is often the person least able to describe the symptoms and their effect
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Difficulties Navigating Through SSA Disability Process The Most Common Complaint is that the Application Process Takes
too Long• Most of our patients desperately want to continue working, they want to hold
onto what is left of their “normal” life before lupus– This often means that they have become quite ill by the time that they
enter the process– The subsequent delays that they experience because no one
understands their disease and its consequences are therefore even more difficult
– They spend years having to prove their case at a time when they often cannot work and too often cannot get medical care because they have lost their insurance
• Over 50% of our successful applicants report that the process took over 13 months
– Of that 50%, half of those people report that it took them 2 years or more
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Difficulties Navigating Through SSA Disability Process What are the Difficulties our Patients Report Experiencing?
• Length of Application Process• Delayed Response Following Application Submission• Most report being denied more than once before they succeed• Applicants Feel SSA Disability Representatives Do Not Have an
Adequate Understanding of lupus• Applicants have difficulty proving the difficulties associated with the
disease • Applicants feel that the decisions are too subjective and hampered
by a lack of understanding of lupus by the examiners• Too many feel humiliated by the process
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The Need for Legal Representation in Order to Succeed
Our patients feel that success in the disability system is too dependent on securing legal representation
Those who succeed early in the process feel that their success stemmed from their obvious handicaps that don’t necessarily represent lupus• they are in a wheelchair or using a walker, using oxygen,
undergoing dialysis, etc.• they are so desperately ill that anyone on the street can
see their distress
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The Need for Legal Representation in Order to Succeed Many feel that the system “forces” them to use an
attorney, because success for a lupus patient depends upon others to help them make their case
They ultimately succeed in getting disability, but most wonder why they have to get an attorney to succeed
One of the most common statements made to a lupus patient is “But you don’t look sick!”• This is true, and it makes them vulnerable to
being misunderstood in the disability process
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Suggestions on How to Improve the Disability Application Process for Lupus Patients SSA adjudicators need to be educated on chronic disease and the
implication of its potential impact on patients Please add lupus to the list of Compassionate Allowances Better education on the difficulty of determining disability by
looking at the applicant• Those most severely impacted by lupus can often look as ‘normal’ as anyone • Lupus patients can be quite ill and still hear the refrain “but you don’t look sick” – those
determining disabilities can seem too often to use that standard in turning down applicants
Improve application response time
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Suggestions on How to Improve the Disability Application Process for Lupus Patients Can LFA – DC / MD / VA Chapter Help?
• Our job is to promote lupus awareness and understanding• We would like to work with you to design an informative session for educate and train
your adjudicators on lupus. Such a session could be used in a number of group training settings. It might be possible to design an online session to be used by the individual worker to learn more about the disease, particularly when dealing with applicants with lupus.
• We believe that a core group could design a session that would educate and sensitize your employees to lupus and to other auto-immune diseases. Such a group might consist of:
– A small number of your employees– Two or more of our physicians– Our patient navigation staff– A small number of our patients who have been through the disability process
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Thank You