Guest Blog - Sickle Cell Disease and Social Security Disability

 

From P. Allen Jones: I know the inability to work because of sickle cell disease is nothing to take lightly. One thing we often experience is excessive absences, inability to perform duties and termination due to sickness. In the US, the Social Security Administration (SSA) will give disability benefits to qualified individuals. The problem for many people, it's difficult to navigate this Agency and their requirements. Thanks to Ram Meyyappan, the following guest-blog post hopes to offer helpful information. 

Applying for Social Security Disability with Sickle Cell Disease

Article by Ram Meyyappan
Social Security Disability Help

The Social Security Administration (SSA) counts Sickle Cell Anemia among the potentially disabling conditions that can qualify a person to receive Social Security Disability (SSD) benefits. If you suffer from Sickle Cell disease and are now unable to work as you once were, you may be able to receive disability benefits through either, or both, of the SSA’s disability programs.

SSD Programs

The SSA has two disability programs:

• Social Security Disability Insurance (SSDI), which is a program for disabled workers who have built up work credits over the course of their employment and who earn below the threshold for what the SSA considers “substantial” income per month due to a severe and medically provable disability.

 

• Supplemental Security Income (SSI), which is a need-based program designed to pay disability benefits to those who either do not meet the criteria for receiving SSDI, or who have such limited income and resources that they need additional monthly financial support.

You can learn more about SSDI and SSI here: www.ssa.gov/pgm/disability.htm

Medical Requirements for Receiving SSD

In addition to meeting the basic technical eligibility criterion for receiving SSD benefits under either of the SSA’s disability programs, you must also show that your Sickle Cell disease is severely debilitating.  There are basic medical eligibility requirements as well as condition-specific medical records and evidence necessary for SSD approval.
The requirements for every disability that qualifies for benefits include having a condition that:

• Prevents you from earning a “gainful living”,

AND

• Has been present, or is expected to last, at least 12 months, or which is terminal.

The condition-specific requirements for being approved for SSD with Sickle Cell disease can be found in Section 7.05 of the SSA’s Blue Book, the manual of medical conditions used by disability determinations examiners.

SSA/Bluebook

This listing requires you experience the at least one following and have substantial medical evidence to back up your symptom claims:

• Three or more episodes of thrombotic (painful) crises in the five months prior to the review of your disability claim,
• Three or more extended hospital stays in the year prior to the review of your disability claim,
• Severe and chronic anemia with a hematocrit of 26 percent or lower

Sickle Cell Complications and SSD Benefits

If you experience severe medical complications, affecting other body systems, then you can potentially be approved for disability benefits under the Blue Book listings for other conditions, even if your Sickle Cell disease doesn’t meet the listing in Section 7.05. Here are a few of the other areas of the Blue Book under which your claim for disability benefits could be evaluated by the SSA:

• Congestive Heart Failure – Section 4.02
• Kidney Failure –Section 6.00
• Stroke – Section 11.04
• Impaired Vision –Sections 2.02, 2.03, and 2.04
• Musculoskeletal System – Section 1.0

Concurrent Conditions and SSD

It is also important to note that the SSA does take all of your medical conditions into account when determining if you meet the eligibility requirements for disability benefits. In other words, your application for benefits should include medical records that detail all of the affects of your Sickle Cell Disease in order to support your claim for benefits. This includes the primary and secondary effects (complications) of your Sickle Cell disorder.

Getting Started with Your Disability Application

Beginning your application as soon as possible is important, as the review process can take a number of months. You can begin your application online immediately, at the SSA’s website www.ssa.gov/pgm/disability.htm or you can schedule an appointment to complete your application in person at your local SSA office.

Work with your doctor to complete the necessary medical evaluation. You will need to provide extensive information on your medical condition, how it affects your ability to work and your (limited) daily activities in your personal life, as well as details regarding your work history, earnings, and your education and training. You will also need to submit details regarding your income and other financial resources.

For more information on sickle cell disease and SSD, please visit:

 www.disability-benefits-help.org  NOTE: This is not a government help website.

Neither this site www.disability-benefits-help.org nor any lawyer or advocate associated with it is affiliated in any way with or endorsed by the Social Security Administration. By requesting a free evaluation, the user will be provided with the name of an independent lawyer or advocate who will contact the user to do the evaluation. Social Security Disability Help is not a lawyer or law firm. It is an advertising service paid for by the lawyers and advocates whose names are provided in response to user requests and it is not an attorney referral service.

 

Sickle Cell Pain And Opioids

There is no way around pain. It will not be ignored and it must be addressed. The issue doctor's deal with is how to treat it. One way is through the use of Opioids.

Sickle cell pain is chronic and life-long. Unless you have the coveted bone marrow transplant, with 100% marrow match and you've been confirmed "cured," you're gonna have episodes of pain. People with sickle cell disease are prescribed many drugs to help us deal with pain, and we have to be careful not to over take our medication....to cure our suffering.

In my previous post, I talk about misconceptions people with sickle cell deal with. One misconception is we're seeking drugs...for fun. This is a huge problem for most people in pain. In addition to misconceptions, there are issues like addiction, depression, damage to organs, and death.

We need Opioids for the relief of pain, however, they are not to be taken lightly. When taking medicine for chronic pain, we (the user) must be informed. Specially related to Opioids, we should know what are they, what they're doing to our bodies, and the risks associated (including abuse and overdose).

To learn more check out this video "Opioids: Friend or Foe" by Canadian Institute for the Relief of Pain and Disability (CIRPD).  It was intended for healthcare providers, but I also think patients (Opioid users) could benefit from this information. Also, CIRPD's article "Opioids and Chronic Pain."

Take the time and learn about Opioids. These medications are intended to help us, but they can also hurt us if we (the user) do not understand their usefulness and our responsibility. 

Check out CIRPD videos or visit their website www.cirpd.org
Also, news related to sickle cell disease and opioid effects go to Medical News Today

Fighting ER Misconceptions About Sickle Cell

Based on an article by Beryl Lieff Benderly

An all too familiar emergency room experience for people with sickle cell disease is humiliating, scary and painful.

Just imagine you are wheeled into the emergency room, every limb on your body feels like large butcher knives are stabbing into your bones. You barely speak except to nod to acknowledge your name and medical record number. A nurse fills out every form, then sends you over to a corner to not disturb others with your cries. You feel like you are dying. Your body hurts, your mind wants to give up and your soul is ready to get out of this pain filled life. This is how it is for many people with sickle cell disease during an emergency room visit.

Last year, Paula Tanabe, an associate professor at the Duke University School of Nursing was commissioned by The National Heart Lung, Blood Institute (NHLBI) to explore this problem.

This issue is complex.

People with sickle cell experience acute and unpredictable pain, severe enough to require large doses of narcotics, is a well-documented feature of sickle cell disease. But Tanabe has found that too often patients in sickle cell agony are not handled properly by doctors and nurses in the emergency department because they erroneously think the patients may be running scams, seeking drugs.

She believes stereotyping is the number one barrier behind that wait: "After being cute little kids with sickle cell that everybody felt bad for when they had pain, now they become this African American 20-year-old asking for high doses of opioid narcotics." 

Ms. Tanabe says better training of health providers and changes in emergency room procedures can improve the care that sickle cell patients receive.

There is hope and help is coming.

Currently, a team has been assembled to update the NHLBI Guideline of Treatment of Sickle Cell Disease. The guideline will be principally aimed at primary care practitioners and their patients to help manage the ongoing processes of the disease. The guideline will also be valuable to hematology specialists and their patients.

There will also be a webinar to discuss these updated guidelines in September 2013 through The Sickle Cell Information Center website.

Personally, I have experienced bad emergency room treatment as well. And, I'd like to thank NHLBI and Ms. Tanabe for their efforts to identify and address this issue.  I appreciate your help in this area.

Source: Kaiser Health News

Sickle Cell in Costa Rica - Blood Has No Color

 

http://www.fundrepa.org/

Translate website from Spanish to English at www.Bing.com/translator

The Foundation for Research and Support for People with Sickle Cell Disease (FUNDREPA) arose from Marianella Orozco’s life experiences. The founder decided to champion the cause of this Costa Rican group because of its need to ensure sickle-cell patients receive multi and interdisciplinary care (medical, genetic, psychological, family and socio-economic) that require and deserve. With this in view, the mission is to significantly improve their quality of life; as well as arrange programs of information and disclosure with preventive and sickle cell disease awareness at the national level.

It’s vision is to represent, mediate, fight, organize, orient and unify, both nationally and internationally, for  people with sickle cell disease and their families to have a more dignified, just and hopeful view of life.

To that I say, “Amen!”

As a result of a proposed inter-agency task force by FUNDREPA in October 2006, a Committee was composed in February 2007 of integrated representatives of five entities with the purpose of developing a joint and systematic work on sickle-cell disease in Costa Rica.

The representatives of this committee include:

1.       TheNational Programme of Neonatal Screening - This is a specialized laboratory for the diagnosis of diseases located in the Center for the Prevention of Disabilities (CPD) in the national children's hospital. (Bingtranslator from Spanish – English)

2.      Center for Research in Hematology and RelatedDisorders (CIHATA) at the University of Costa Rica who say 3% of the population are carriers of hemoglobin “C”(HbC) gene and 8-10% are sickle HbS gene carriers. (Bingtranslator from Spanish – English)

 

3.      TheCosta Rican Association of Haematology (ACH) which brings together professionals in medicine and microbiology who are specialists in hematology and Hematological Immunology and transfusion medicine.  They integrate professionals from other general areas or other specialties in the health field who have an active interest in hematology. (Bing translator from Spanish -English)

FUNDREPA educates Costa Ricans on topics related to Hemoglobinopathies (blood disorders), pain management, Iron Overload, the disabling implications of sickle cell disease, and emphasis on knowing and exercising their rights.

They say, “As human beings in the first instance, and as citizens of a nation, in second, our lives are protected by a vast legal framework both at international and local levels. If we are aware… we will fight for our rights in situations in which the same are to us deny. This is particularly important when it comes to vital as health, education and work areas.”

 I agree 100%.

I always say that sickle cell disease is a blood disorder that affects people world-wide. FUNDREPA also has a comprehensive list of sickle cell organizations world-wide on their website LINKs section.

FUNDREPA is a voice for people with sickle cell disease in Costa Rica. To that I say, “Thank you and keep up the good (much needed) work!”

To find out more about check out FUNDREPA

www.fundrepa.org  

FUNDREPA facebook page

(NOTE: Microsoft Bing translates website to your language www.bing.com/translator) 

 

 

 

 

Services For People With Sickle Cell

One thing I'm always looking for are services for people suffering with Sickle Cell Disease. There is one organization that has come to my attention and I want to highlight what they're doing. I offer my support and cheer them on as they do their very important work, supporting the needs of people with Sickle Cell Disease.

Ok, just imagine being sick, having no where to live and needing someone to care.

The Sickle Cell Foundation of Tennessee is showing how to care AND doing something about the situation. They are in the process of preparing a transition home for 6 adult males living with Sickle Cell Disease.

The Carpenter House, named after Mr. Kenneth Carpenter who co-founded the Sickle Cell Walk in the Tennessee area and who donated the property, is being renovated in preparation for ribbon cutting ceremonies soon.

The Carpenter House will give young men with Sickle Cell Disease a place to call home. This will be a place where they will receive compassion and support to stay healthy, and live in a nice home.

In addition to The Carpenter House, Sickle Cell Foundation of Tennessee provides services like providing gas cards (for doctor appointment travel), utility bill assistance (when we get sick our bills suffer too) and burial assistance (do I need to explain this one?).

Donations to help this effort would be greatly appreciated. See how you can help or get more information about what's going on at Sickle Cell Foundation of Tennessee . 

 

God bless you Sickle Cell Foundation of Tennessee for caring and being help for people with Sickle Cell Disease in the Tennessee area. Now, let's work on a transition home for women with sickle cell disease!!!!!!!!