Lupus and Social Security Disability in DC/MD/VA Penelope C. Fletcher President & CEO Lupus Foundation of America, DC/MD/VA/Chapter, Inc.

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.

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.

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.

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.

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

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

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.)

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

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

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

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!

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

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

Organ Systems Affected by Lupus – as reported by our Patients Seeking Disability

Lupus Symptoms Affecting Our Patient’s Ability to Work That Lead Them to Seek Disability

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

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

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

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

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

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

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

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

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

Thank You You