Understanding Your Disability

Understanding Your Disability As Defined by the Social Security Act

Caring Voice Coalition - Phone: 888-267-1440 Your Physician’s Number ___________________ Your Specialty Pharmacy ___________________

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About Caring Voice Coalition Caring Voice Coalition, Inc. is a national 501(c)(3) non-profit, charitable organization, established in 2003 to serve the comprehensive needs of individuals affected by serious, chronic disorders.

Many persons impacted by a chronic illness reach a point where they can no longer work. To help allow for continued income and insurance, Caring Voice developed a Disability Program to help individuals understand the complicated issues involved in proving entitlement for disability benefits. By providing accurate information about Social Security programs and the benefits that you and your family may be eligible for, CVC provides guidance in determining whether applying for a disability is right for you.

It is CVC’s mission to obtain a favorable decision at the earliest possible stage as we understand the financial and medical needs associated with individuals suffering from chronic illnesses. To do so, CVC facilitates the process of an individual’s claim by collecting and analyzing all medical records and evidence in order to present a strong, well-supported claim to Social Security examiners. A CVC representative familiar with Social Security law will act as your representative and assist you through every stage of filing your claim. CVC evaluates each individual case to determine the Social Security Administration (SSA) ruling or guideline that an individual should be found disabled. Representatives then set out to collect the necessary evidence to present a strong, well supported claim in order to receive a favorable decision from the SSA. In the event that your claim must be appealed to an Administrative Law Judge, an attorney will prepare and represent you at the hearing. Disability assistance provided by CVC is offered free of charge.

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Table of Contents How Does the SSA Define Disability.................... 5 What is Substantial Gainful Activity (SGA)...........6 The Five-Step Disability Determination Process.. 7 Social Security Disability vs.

Supplemental Security Income...................13 Children and Disability Benefits...........................22 The Appeals Process.............................................24 Tips for Applying for Disability.............................26

Commonly Used Acronyms Administrative Law Judge (ALJ) Caring Voice Coalition (CVC) Continuing Disability Review (CDR) Disability Determination Service (DDS) Disabled Adult Child benefits (DAC) Social Security Administration (SSA) Social Security Disability Insurance (SSDI) Substantial Gainful Activity (SGA) Supplemental Security Income (SSI) 4

How does the SSA define disability?

According to the Social Security Act, the definition of disability is “the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment, which can be expected to result in death, has lasted or can be expected to last, for a continuous period of not less than 12 months.” For more information, visit www.ssa.gov.

In broader terms, “disability” under Social Security is based on your inability to work. You are considered disabled under SSA rules if: »» »»

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You cannot do work that you could before You cannot adjust to other work because of your medical condition(s) Your disability has lasted or is expected to last for at least one year or to result in death

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What is Substantial Gainful Activity (SGA)?

The SSA uses the term “substantial gainful activity” to describe a level of work activity and earnings. Work is “substantial” if it involves doing significant physical or mental activities or a combination of both. For work activity to be substantial, it does not need to be performed on a full-time basis. Work activity performed on a parttime basis may also be substantial gainful activity.

“Gainful” work activity is: »» »» »»

Work performed for pay or profit Work of a nature generally performed for pay or profit Work intended for profit, whether or not a profit is realized

SSA generally uses earnings guidelines to evaluate whether work activity is SGA. If impairment is anything other than blindness, earnings averaging more than $1,000 a month (for the year 2011) generally demonstrate SGA. If you are blind, earnings averaging over $1,640 a month (for the year 2011) generally demonstrate SGA for Social Security Disability Insurance (SSDI).

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The Five-Step Disability Determination Process To decide if you are disabled, Social Security uses a step-by-step process involving five questions: 1.

Are you working?

If you are working in 2011 and your earnings average more than $1,000 a month, you generally cannot be considered disabled. If you are not working, SSA goes to Step 2.

2.

Is your condition “severe�?

Your condition must interfere with basic work-related activities for your claim to be considered. If it does not, SSA will find that you are not disabled. If your condition does interfere with basic work-related activities, SSA goes to Step 3.

Is your condition found in the list of disabling conditions?

3.

For each of the major body systems, SSA maintains a list of medical conditions that are so severe that they automatically mean you are disabled. If your condition is not on the list, SSA has to decide if it is of equal severity to a medical condition that is on the list.

It if is, SSA will find that you are disabled. If it is not, SSA goes to Step 4.

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NOTE: SSA has initiative programs designed to expedite processing of new claims: Compassionate Allowances: Certain cases that usually qualify for disability can be allowed as soon as the diagnosis is confirmed.

Complete List of Compassionate Allowances Conditions »» »»

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Acute Leukemia Adrenal Cancer - with distant metastases or inoperable, unresectable or recurrent Alexander Disease (ALX) - Neonatal and Infantile The ALS/Parkinsonism Dementia Complex Alstrom Syndrome Amegakaryocytic Thrombocytopenia Amyotrophic Lateral Sclerosis (ALS) Anaplastic Adrenal Cancer - with distant metastases or inoperable, unresectable or recurrent Angelman Syndrome Aortic Atresia Astrocytoma - Grade III and IV Ataxia Telangiectasia Batten Disease Bilateral Retinoblastoma Bladder Cancer - with distant metastases or inoperable or unresectable Bone Cancer - with distant metastases or inoperable or unresectable Breast Cancer - with distant metastases or inoperable or unresectable Canavan Disease (CD) Cerebro Oculo Facio Skeletal (COFS) Syndrome Chronic Myelogenous Leukemia (CML) - Blast Phase Corticobasal Degeneration Creutzfeldt-Jakob Disease (CJD) - Adult Cri du Chat Syndrome Degos Disease, Systemic Early-Onset Alzheimer’s Disease Edwards Syndrome (Trisomy 18)

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Eisenmenger Syndrome Endomyocardial Fibrosis Ependymoblastoma (Child Brain Tumor) Esophageal Cancer Farber’s Disease (FD) - Infantile Fibrodysplasia Ossificans Progressiva Friedreichs Ataxia (FRDA) Frontotemporal Dementia (FTD), Picks Disease -Type A - Adult Fukuyama Congenital Muscular Dystrophy Gallbladder Cancer Gaucher Disease (GD) - Type 2 Glioblastoma Multiforme (Adult Brain Tumor) Glutaric Acidemia Type II (Neonatal) Head and Neck Cancers - with distant metastasis or inoperable or uresectable Heart Transplant Graft Failure

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List of Compassionate Allowances Conditions, continued »» »» »» »» »» »» »» »» »» »» »»

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Heart Transplant Wait List, 1A/1B Hemophagocytic Lymphohistiocytosis (HLH), Familial Type Hypoplastic Left Heart Syndrome Idiopathic Pulmonary Fibrosis Infantile Neuroaxonal Dystrophy (INAD) Infantile Neuronal Ceroid Lipofuscinoses Inflammatory Breast Cancer (IBC) Junctional Epidermolysis Bullosa, Lethal Type Kidney Cancer - inoperable or unresectable Krabbe Disease (KD) - Infantile Large Intestine Cancer - with distant metastasis or inoperable, unresectable or recurrent Late Infantile Neuronal Ceroid Lipofuscinoses Left Ventricular Assist Device (LVAD) Recipient Leigh’s Disease Lesch-Nyhan Syndrome (LNS) Lewy Body Dementia Liver Cancer Lowe Syndrome Malignant Multiple Sclerosis Mantle Cell Lymphoma (MCL) Maple Syrup Urine Disease Merosin Deficient Congenital Muscular Dystrophy Metachromatic Leukodystrophy (MLD) - Late Infantile Mitral Valve Atresia Mixed Dementias MPS I, formerly known as Hurler Syndrome MPS II, formerly known as Hunter Syndrome MPS III, formerly known as Sanfilippo Syndrome Mucosal Malignant Melanoma Multicentric Castleman Disease Multiple System Atrophy Neonatal Adrenoleukodystrophy Niemann-Pick Disease (NPD) - Type A Niemann-Pick Disease-Type Non-Small Cell Lung Cancer - with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent Ornithine Transcarbamylase (OTC) Deficiency Osteogenesis Imperfecta (OI) - Type II

»» Ovarian Cancer - with distant metastases or inoperable or unresectable »» Paraneoplastic Pemphigus »» Pancreatic Cancer »» Patau Syndrome (Trisomy 13) »» Peritoneal Mesothelioma »» Pleural Mesothelioma »» Pompe Disease - Infantile »» Primary Cardiac Amyloidosis »» Primary Central Nervous System Lymphoma »» Primary Effusion Lymphoma »» Primary Progressive Aphasia »» Progressive Multifocal Leukoencephalopathy »» Progressive Supranuclear Palsy »» Pulmonary Atresia »» Pulmonary Kaposi Sarcoma »» Rett (RTT) Syndrome »» Salivary Tumors »» Sandhoff Disease »» wSingle Ventricle »» Small Cell Cancer (of the Large Intestine, Ovary, Prostate, or Uterus) »» Small Cell Lung Cancer »» Small Intestine Cancer - with distant metastases or inoperable, unresectable or recurrent »» Spinal Muscular Atrophy (SMA) - Types 0 And 1 »» Spinocerebellar Ataxia »» Stomach Cancer - with distant metastases or inoperable, unresectable or recurrent »» Subacute Sclerosis Panencephalitis »» Tay Sachs Disease - Infantile Type »» Thanatophoric Dysplasia, Type 1 »» Thyroid Cancer »» Tricuspid Atresia »» Ullrich Congenital Muscular Dystrophy »» Ureter Cancer - with distant metastases or inoperable, unresectable or recurrent »» Walker Warburg Syndrome »» Wolman Disease »» Zellweger Syndrome

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“TERI” case

The SSA has an expedited procedure for processing terminally ill cases to ensure that a favorable decision can be made expeditiously. The code word for this type of case is “TERI” case. This type of case needs to be flagged or noted in some way by the claim representative so that the case can move expeditiously to the Disability Determination Service (DDS). There are no cash benefits paid to the family if the claimant expires during the waiting period or while a disability decision is being established. The individual’s medical records or pathology report must reflect that the claimant is terminally ill or about to expire in six months

or less.

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Can you do the work you did previously?

4.

If your condition is severe but not at the same or equal level of severity as a medical condition on the list, then we must determine if it interferes with your ability to do the work you did previously. If it does not, your claim will be denied. If it does, SSA proceeds to Step 5.

5.

Can you do any other type of work?

If you cannot do the work you did in the past, SSA determines if you are able to adjust to other work. SSA considers medical conditions, age education, past work experience and any transferrable skills you may have. If you cannot adjust to other work, your claim will be approved. If you can adjust to other work, your claim will be denied.

The difference between Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) Social Security Disability (SSDI)

SSDI is a federal disability insurance program designed for individuals who have worked enough to earn sufficient “work credits.” Under this program, monthly payments are based on the individual’s earning record. SSDI provides monthly cash benefits and Medicare entitlement to those who are disabled. If you do not have enough work credits to qualify for SSDI then you may be eligible for SSI. Those who receive SSDI approval will begin receiving monthly cash benefits after five full months of waiting.

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Work Credits How Much Work Do You Need?

In addition to meeting Social Security’s Definition of disability, you must have worked long enough and recently enough under Social Security to qualify for disability benefits. Social Security work credits are based on your total yearly wages or self-employment income.

You can earn up to four credits each year. The amount needed for a credit changes from year to year. In 2011, for example, you earn one credit for each $1,120 of wages or self-employment income. When you’ve earned $4,480, you’ve earned your four credits for the year.

The number of work credits you need to qualify for disability benefits depends on the age in which you became disabled.

Generally, you need 40 credits, 20 of which were earned in the last 10 years ending with the year you became disabled.

However, younger workers may qualify with fewer credits.

IMPORTANT: Remember that whatever your age is, you must have earned the required number of work credits within a certain period ending with the time you become disabled. If you qualify now but you stop working under Social Security, you may not continue to meet the disability work requirement in the future.

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Supplemental Security Income (SSI)

SSI is a combined state and federal financial assistance program which provides monthly payments to individuals who either never worked or have insufficient credits on their earnings record to qualify for SSDI. Those eligible for SSI may also be automatically eligible for Medicaid benefits.

An individual with little or no income receives the maximum benefit amount of roughly $674 per month in 2011.

Both SSI and SSDI programs are administered by the Social Security Administration and the disability criteria are the same for both. Each individual who applies for SSDI is also screened for SSI benefits. SSI payments may be available during the usual five-month waiting period before SSDI case benefits begin. Benefits become payable the month after the application is filed regardless of when the disability began.

Understanding Social Security Disability

Once a favorable decision is received, there is a waiting period before an individual qualifies for monthly benefit checks. An individual becomes entitled to their disability payment in the sixth month after they first become disabled under the rules of the Social Security Administration.

There is often an extended period of time from when an individual stops working and begins receiving monthly disability benefits.

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SSI may be payable during this time to help cover financial obligations during the waiting period. However, SSI entitlement requirements must be met.

Two years after entitlement to SSDI benefits, an individual becomes eligible for Medicare. Once an individual becomes eligible, Social Security Disability recipients are automatically enrolled in Medicare, unless they affirmatively opt out of the plan. In addition, all Medicare beneficiaries may enroll in a prescription drug plan which can help pay part of their medication costs for an additional premium (Part D Plan).

It is important for an individual to sign up for medical or drug coverage when they first become eligible for Medicare, otherwise an individual can be charged higher premiums when they do enroll and may have to wait for the next open enrollment period to sign up. People with limited income and resources may qualify for additional assistance with medical and drug costs.

How will returning to work affect my SSD benefit?

The SSA has created special rules that make it possible for people receiving Social Security Disability benefits or SSI to work and still receive monthly payments until they can work on a regular basis.

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Additionally, if an individual cannot continue working because of their medical condition, the benefits can start again – likely without having to file a new application.

Work incentives include: • • •

Continued cash benefits for a time while you work Continued Medicare or Medicaid while you work Help with education, training and rehabilitation to start a new line of work

While the rules are different under Social Security and SSI, it is important to let the SSA know promptly when an individual starts or stops working.

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Understanding Supplement Security Income

While there is no work history requirement to be eligible for SSI, you must: • Be over 65, blind or disabled • Meet citizenship requirements • Meet the financial requirements for SSI

What are the financial requirements for SSI?

SSI recipients are typically required to have limited financial resources and assets that do not exceed $2,000 for one person and $3,000 for a couple.

The other factor is household income. If your income is over the allowable limit, you cannot collect SSI. This limit is adjusted annually according to the cost of living. Also, if your income is below the limit, your SSI benefit will be reduced according to the amount of income.

What assets are counted for SSI eligibility?

• Cash and checking or savings account • Land and buildings (other than the home in which you reside) • Personal property such as jewelry and household goods • Life insurance • Stocks, bonds, or other investments • Automobiles (other than the one used for employment or treatment transportation)

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What assets are exempt?

There are many resources that are considered exempt from the asset limit for SSI, the most substantial being the home in which you live. Other exempt items include: • •

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Equipment required due to your physical condition Household goods and property worth less than $2,000 One wedding ring and one engagement ring Burial space for you and your family Burial funds for you and your spouse, each valued at $1,500 or less Life insurance policies with a combined face value of $1,500 or less. However, you and your spouse may each have life insurance policies totaling no more than $1,500 Retroactive SSI or SSD checks for up to six months after you receive them One car, if it is used for employment or medical treatment Property set up in a trust according to certain state’s laws, as long as the SSI beneficiary has no direct access to trust funds

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What income is counted for SSI eligibility?

SSI counts several kinds of income:

• Earned income: money received for wages or earnings from self-employment • Unearned income: money received from other sources, such as SSD benefits, unemployment insurance, workers’ compensation, interest income, and cash from friends or relatives • In-kind income: free food, clothing, or shelter

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What benefits would I receive under SSI? Medicaid

Medicaid is a state administered health insurance program for those people who cannot afford to pay some or all of their medical bills. To get Medicaid due to disability, an individual must be disabled and meet state income and resource standards and other requirements. In addition, an individual must be a resident of the state, and be a citizen or a qualified immigrant. Legal immigrants can also qualify under certain circumstances depending on their date of entry into the country.

Cash Benefits The SSI Standard Benefit Amount is the maximum dollar amount that you can receive in federal SSI cash benefits on a monthly basis, provided your countable resources are less than the SSI Resource Limits ($2,000 for individuals, $3,000 for couples). The Standard Benefit Rate for 2011 is $674.

How will returning to work affect my SSI benefits?

The amount of SSI payments is based on how much other income an individual has. When other income increases, SSI payments typically decrease. When an individual earns more than the SSI limit, the payments will stop. However, payments will automatically start again for any month income drops to less than the SSI limits.

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In general, Medicaid coverage will continue, even after the SSI payments stop, until income reaches a certain level.

That level varies by state and reflects the cost of health care in a particular state. However, if an individual’s health care costs are higher than the state’s level, an individual can have more income and keep their Medicaid. In most states, for an individual’s Medicaid to continue, they must: • •

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Need it to work Be unable to afford similar medical coverage without SSI Continue to have a disabling condition Meet all other SSI eligibility requirements

Children and Disability Benefits SSD Benefits

Disabled children under the age of 18 usually will not have worked long enough to earn insured status under their Social Security account, however, SSI benefits may be payable if other requirements are met.

Children under age 18, whether disabled or not, may be eligible to draw benefits on a parent’s Social Security earnings records, if the parent is receiving disability or retirement benefits from Social Security or the parent is deceased and has met insured status requirements.

A disabled child of an insured parent who is receiving disability or retirement benefits, or has died, may be eligible for a benefit called Disabled Adult Child (DAC) benefits.

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If the child is age 18 or older, unmarried (although marriage to another DAC beneficiary is allowable), and the disability began prior to age 22, they may be eligible for DAC. This benefit may continue for the child’s lifetime as long as the child remains disabled, unmarried, does not engage in substantial gainful activity resulting in benefit cessation, and does not become entitled to a higher benefit amount on another Social Security program. DAC benefits will result in Medicare eligibility after being entitled to cash benefits for 24 months.

SSI Benefits

A child younger than age 18 can qualify for SSI benefits if he or she meets Social Security’s definition of disability for children, and his or her income and resources fall within the eligibility limits. The income and resource guidelines are adjusted according to the number of parents and other children living in the household. However, once a child turns 18, only his or her income and resources are included for SSI eligibility purposes, even if he or she continues living at home. It is important to note that any person who is found eligible for SSI benefits under the rules for children will automatically be subject to a review once they turn 18 to determine if they remain disabled under the adult rules.

Criteria

Social Security evaluates a child’s condition under a special set of rules for determining disability in children.

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If a child’s condition is not listed and is not medically as serious as a listed condition, a child will be considered disabled if he or she suffers from severe limitations in his or her activities. Social Security will look at all activities your child does, such as playing and attending school, and compare your child’s functioning with other children the same age who do not have disabilities. Important factors in this decision can include the side effects of medications and treatments required by the child’s condition and how much help the child needs to function in daily activities compared to other children.

The Appeals Process Level One - Reconsideration

The Reconsideration process occurs when an appeal is made on the initial denial. The Disability Determination Service reviews the previously considered information, along with any new information that becomes available.

An appeal must be filed within 60 days of receipt of the denial.

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Level Two - Hearing

If you disagree with the Reconsideration decision, you may ask for a hearing. The hearing will be conducted by an Administrative Law Judge (ALJ). The ALJ conducts an informal hearing and the claimant has a chance to personally present their claim.

The ALJ takes a fresh look at all of the evidence and issues an independent decision based on the merit of the claim. It is helpful that the claimant have an attorney assisting them at the hearing level. If the ALJ issues a denial, the claimant can start the whole process over by filing a “new” claim for Social Security Disability benefits, which may be filed while an appeal is pending at the Appeals Council.

Level Three - Appeals Council

Appeals Council Review most often occurs when the claimant appeals an unfavorable decision by the ALJ. The Appeals Council may take no action on the claim, affirm the ALJ’s decision, reverse the ALJ’s decision or remand the case back to the ALJ with specific instruction on how to proceed. Currently there is a 24 month backlog at the Appeals Council.

Level Four - Federal Court

If you disagree with the Appeals Council’s decision or if the Appeals Council decides not to review your claim, you may file a lawsuit in a federal court that can take up to three years to resolve. An appeal may be made all the way up to the United States Supreme Court.

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Continuing Disability Review

Social Security periodically reviews your disability to decide if you are still disabled. If they determine you are no longer disabled, they will stop your benefits.

Social Security calls this review a Continuing Disability Review (CDR). The law requires Social Security to perform a CDR approximately every three years; unless they determine you have a condition that they expect will improve sooner than that. However, if you have a condition that is not expected to improve, Social Security will still review your case, but not as often as every three years.

Social Security also reviews your income, resources, and living arrangement to ensure that non-medical requirements are met. This periodic review is called a redetermination.

Tips for Applying for Disability Proof from Doctors Medical evidence As is the case with most legal claims, what counts in disability evaluations is what you can prove. If no medical records exist to support your claim or if they are weak, you are unlikely to be successful.

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SSA figures that if your medical condition is severe enough to keep you from working, then it should justify doctor visits, tests, diagnosis and treatment. The records should support your symptoms.

Keep good records Without records, you are unlikely to remember the date of every doctor visit, lab test, medicine taken and therapy received.

Obtain the business cards of every doctor you see, save your medication lists and keep notes of your good days and bad days and other medical events. We recommend maintaining a diary that will allow you to keep track of this information. In order to assist you in this effort, we have developed a diary for your use.

Evidence from You Symptoms vs. Diagnosis SSA does not expect you to be an expert on medical conditions; SSA would rather learn about your impairment from your doctor and your medical records. What SSA wants to receive from you are details about your symptoms.

For example, how severe is your fatigue, shortness of breath, cognitive impairment, etc.? Is it constant or intermittent? What aggravates your symptoms? What reduces it? No one knows your symptoms better than you. Do your best to explain them in great detail without exaggerating or minimizing.

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Do not omit or gloss over any lesser conditions just because you have one severe condition and several minor ones.

Again, maintaining a diary will help you keep track of these important details and may be the deciding factor in whether you are determined disabled.

Physical restrictions What can’t you do? Sit for lengthy periods? Stand and walk? Lift and carry?

Bend, twist, kneel and stoop? Manipulate objects with your hands? Social Security disability is a functional program.

SSA will focus on your limitations rather than your diagnosis.

Effect of symptoms and restrictions How does your medical condition affect your daily activities? Tell SSA about the impact on your personal care (hygiene, dressing, bathing), errands and housework (driving, shopping, cleaning), and social functioning (hobbies, sports, interaction with friends and family).

Final Point

Consistency, accuracy and honesty Contradictions, errors, memory lapses and discrepancies all work to erode your credibility, and nothing will sink your claim faster than questions about your truthfulness.

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Wellness Journal

Which medications are you currently taking?

Medication

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Duration (weeks)

Result

Doctor’s Visits Date: Doctor: Business of visit:

Date: Doctor: Business of visit:

Date: Doctor: Business of visit:

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How Are You Feeling?

Date: How are you feeling:

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How Are You Feeling?

Date: How are you feeling:

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How Are You Feeling?

Date: How are you feeling:

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How Are You Feeling?

Date: How are you feeling:

Please visit caringvoice.org for more blank, printable journal pages 35

Contact Caring Voice Coalition

8249 Meadowbridge Road Mechanicsville, VA 23116 Phone: (804) 427.6468 Toll-free: (888) 267.1440 CVCInfo@caringvoice.org