NEW COMPASSIONATE ALLOWANCES

In 2022 and 2021 there were new Compassionate Allowances. The Compassionate Allowances initiative allows Social Security to quickly identify severe medical conditions that meet the criteria for SSD benefits.

Because the diseases on the list are so severe, the SSA wants to pay benefits as soon as possible. For example, fatal conditions like ALS are on the allowances list. Every year, new compassionate allowances are added to the list.

If you know you have a medical condition that qualifies under compassionate allowances, then you can state that on your application for benefits. Currently, there are 257 conditions on the list. Read more about past additions to the list. Also, learn more about new medical conditions. Every year there are new allowances on the list. Learn more about new allowances for 2023.

According to the SSA, more than 700,000 people have their claims approved through the Compassionate Allowances program. Additionally, you can submit the name of a severe condition for consideration under SSA’s list. You should submit your disease to the SSA if you have a rare medical condition.

NEW COMPASSIONATE ALLOWANCES ADDED IN 2022 & 2021

Charlevoix-Saguenay Spastic Ataxia

Charlevoix-Saguenay Spastic Ataxia is a rare autosomal recessive disorder. It was first seen in families from the Charlevoix-Saguenay area of Quebec, Canada. However, rare cases have been reported world wide. The clinical findings that accompany the disease include cerebellar ataxia, spasticity, and peripheral nerve involvement with sensory loss and weakness.

The disorder is caused by mutations in SACS gene which results in an unstable sacsin protein. The sacsin protein is thought to impair organization of neurofilaments. In order to inherit the disorder, the abnormal mutation must be present in both parents who are carriers. The carrier parents are not affect by the condition. Diagnosis is based on clinical history and is confirmed by genetic testing.

The disorder is usually first seen when a child begins to walk, between the ages of 12-18 months old and 2 years old. The child will have gait difficulties. The condition progresses slowly over time. By the time the patient reaches their thirties or forties they will require a wheelchair.

PHYSICAL FINDINGS OF CHARLEVOIX-SAGUENAY SPASTIC ATAXIS

This disease is characterized by:

• Trouble walking;
• Spasticity;
• Reduced sensation and weakness in the arms and legs (peripheral neuropathy);
• Muscle wasting;
• Involuntary eye movements (nystagmus) and abnormal retinal pigmentation;
• Trouble swallowing and speaking;
• Finger and foot deformities;
• Hypermyelination of the retinal nerve fibers;
• Mitral valve prolapse;
• High arched feet;
• Scoliosis;
• Hearing loss;
• Recurrent seizures (epilepsy); and
• Bladder dysfunction.

Choroid Plexus Carcinoma

Choroid Plexus Carcinoma is a rare malignant cancer of the brain. It grows aggressively, invading surrounding tissue and impairing normal brain function.

The condition  typically occurs in the ventricles of the choroid plexus structure, which produces and secretes most of the body’s cerebrospinal fluid. It is also occasionally originates in the spinal cord.

Choroid Plexus Carcinoma can affect people at any age. But, it is usually occurs in infants within the first year of life. It is a Grade III tumor.  Choroid Plexus Papilloma (Grades I and II) are not the same as a Grade III tumor, because Grades I and II are non-cancerous. Therefore, they are not disabling under the compassionate allowances program.

Choroid Plexus Carcinoma tumors spread aggressively. The prognosis is generally poor. Only about one in four children will survive five years past the initial diagnosis. Although, children who successfully undergo complete tumor resection surgery have a much more favorable outlook. They have  a five-year survival rate of about 60%.

TREATMENT AND PHYSICAL FINDINGS OF CHOROID PLEXUS CARCINOMA

Surgical intervention to remove the tumor is usually the initial course of treatment. However, complete surgical resection often presents high risk of damage to nearby areas of the brain. It is possible to have a partial resection  in combination with other treatments, like chemotherapy and radiation. Additionally, follow-up surgery may be necessary in case the tumor reoccurs.

Common physical symptoms of Choroid Plexus Carcinoma include:

• Headache;
• Dizziness;
• Blurred or double vision;
• Nausea; and
• Mood disturbances and irritability.

These symptoms are associated with buildup of pressure in the brain as the tumor grows.

CIC-rearranged Sarcoma

CIC-rearranged sarcoma is a class of small round-cell tumors that fall under the Ewing sarcoma group of cancers. Although historically grouped with Ewing sarcomas, these tumors are distinct, because they tend to be more aggressively metastatic than Ewing sarcomas.

The tumors occur in soft tissue or visceral organs. But, sometimes they originate  in bone. This occurs in about 3% of cases. Metastasis is early and rapid, most commonly to the lungs and brain. Males are  slightly more likely to be contract the cancer than females.

CIC-rearranged tumors that metastasize have a prognosis of less than 2 years. But, if the tumor is localized and  can be fully resected, then the 5-year survival is about 50%.

PHYSICAL FINDINGS OF CIC-REARRANGED SARCOMA

Physical symptoms are similar to Ewing sarcoma and may include:

• Pain and swelling at the tumor site;
• Necrosis and hemorrhage in surrounding tissue;
• Fever; and;
• Cyst-like growth with visible blood vessels over the tumor.

Congenital Zika Syndrome

Congenital Zika syndrome (CZS) is a pattern of birth defects caused by in utero infection of the fetal brain with theZika virus. A small percentage of children born with microcephaly have normal intelligence. However, most children with CZS have issues with walking, communicating, coordination, and speech issues. The children need constant attention and care.

There is no current treatment available for CZS. Some of the intervention programs like occupational therapy and speech assistance can provide some help.

Desmoplastic Mesothelioma

Desmoplastic Mesothelioma is a rare and highly aggressive cancer. It occurs most commonly in the pleura. The pleura is the membranous enclosure surrounding the lungs. It occasionally originates in the linings of the heart and visceral organs. The term “desmoplastic” refers to the signature masses of fibrous connective tissue that occurs in the cancerous areas.

Unlike other subtypes of mesothelioma, the desmoplastic variant is not closely linked to asbestos. In fact, less than 20% of cases involve asbestos exposure. Desmoplastic mesothelioma affects males twice as frequently as females. The cancer usually presents itself after age 40.

Unfortunately, by the time of discovery, Desmoplastic mesothelioma usually metastasizes. The prognosis is extremely poor. For example, there is a survival rate of about six months following diagnosis.

Desmoplastic mesothelioma is frequently mistaken for pleural fibrosis upon examination. Biopsy analysis confirms the diagnosis.

PHYSICAL FINDINGS OF THE DISEASE

Physical findings include:

• Shortness of breath;
• Pain in the chest or abdomen;
• Lumps or swelling at cancer site; and
• Sudden weight loss.

If you have Desmoplastic Mesothelioma, your attorney should contact the SSA and inform them that you likely have a TERI case. Additionally, your attorney should request that the SSA find you meet the criteria under listing 13.15A.

Duchenne Muscular Dystrophy- Adult

Duchenne Muscular Dystrophy is a progressive genetic disorder. The symptoms include muscle weakness and wasting and loss of motor skills and the ability to walk. Eventually, the patient experiences heart and respiratory failure. The Duchenne type is the most common of the muscular dystrophies.

Duchenne Muscular Dystrophy begins early in life with cardiac complications. These include a weak or irregular heartbeat. In late adolescence and adulthood, the heart enlarges, causing symptoms to worsen. This condition, known as dilated cardiomyopathy, is a leading cause of death in Duchenne Muscular Dystrophy patients.

Duchenne Muscular Dystrophy is caused by a mutation on the DMD gene. The mutation prevents the production of dystrophin, a protein critical to the health and growth of muscle cells. The condition follows an x-linked recessive inheritance pattern and almost exclusively affects males.

Pericardial Mesothelioma

Pericardial Mesothelioma is a rare asbestos-related cancer that originates in the pericardium. The pericardium is the protective membrane lining the heart. This type of mesothelioma is very rare, accounting for less than 1 percent of malignant mesothelioma cases.

Clinical symptoms and signs are frequently nonspecific. Unfortunately, because of the difficulty in diagnosis, the disease is usually found after surgery or at autopsy.

This form of cancer is most often occurs in people between the ages of 50 and 70, with the median age being 55. Approximately 60 percent of cases occur in men. Due to its rarity symptoms, doctors usually diagnose it late when the disease burden is extensive.

Refractory Hodgkin Lymphoma

Refractory Hodgkin Lymphoma (RHL) is a type of cancer affecting the lymphatic system which either does not respond to treatment or recurs within a year of successful treatment.

Patients with RHL will have previously been diagnosed with classical Hodgkin Lymphoma (HL) and have received treatment. Their cancer resists treatment (Refractory) or returns following remission (Relapse). That is when they receive the RHL diagnosis. Hodgkin Lymphoma is distinguished from other lymphomas primarily by the presence of giant cells known as Reed-Sternberg cells.

Renpenning Syndrome

Renpenning syndrome is another disorder on the new compassionate allowances list. This syndrome is a disorder the almost exclusively affects males. The syndrome causes developmental delay, moderate to severe intellectual disability, and distinctive physical features.

Renpenning syndrome occurs due to a mutation on the PQBP1 gene at the chromosome locus Xp11.23. The gene provides instructions to make polyglutamine-binding protein. This protein plays a role in processing and transporting RNA and is needed for normal brain development.

SCN8A Related Epilepsy with Encephalopathy

SCN8A-related Epilepsy with Encephalopathy is a rare autosomal-dominant genetic disorder affecting infants.  Children who have this disease have multiple types of seizures, along with intellectual disability. The seizures are refractory. This means the seizures do not respond to or improve with treatment.

While the condition is often evident at birth, some infants exhibit apparently normal development until the onset of seizures. Once the seizures begin, the child begins to regress from both physical and cognitive standpoints. The severity of intellectual impairment associated with SCN8A-related epilepsy encephalopathy varies from mild to severe.

As the name indicates, it is the mutation on the SCN8A gene that causes the condition. Scientists do not fully understand the relationship between the genetic anomaly and its distinct effects on intellectual and physical development. Some research indicates that these symptoms are more closely correlated with the brain damage resulting from the seizures, rather than the mutation itself. Learn more about epilepsy and SSD benefits.

PHYSICAL FINDINGS  OF THE DISEASE

Physical findings include:

• Seizures of multiple types (absence, tonic-clonic, convulsive);
• Intellectual disability including autistic features;
• Motor disorders;
• Muscle weakness; and
• Sleep disorders.

SYNGAP1-related NSID

SYNGAP1-related NSID is a condition that primarily affects the central nervous system. The SYNGAP1 gene is the gene which mutates and causes the disease. Almost all cases are due to de novo mutations. However, the condition can be passed down to future generations in an autosomal dominant manner. Treatment is based on the signs and symptoms present in each person.

PHYSICAL FINDINGS OF SYNGAP1-RELATED NSID

The physical findings of the disease are:

• Epileptic encephalopathy;
• Microcephaly (abnormally small head);
• Torticollis;
• Moderate to severe intellectual disability;
• Seizures;
• Autism spectrum disorder;
• Loss of developmental milestones;
• Decreased muscle tone;
• Global developmental delay;
• Language impairment; and
• Motor delay.

Taybi-Linder Syndrome

Taybi-Linder syndrome is a rare genetic disease caused by a mutation of the gene RNU4ATAC. Malformations of the bone and central nervous system are the main symptoms of the disease. Additionally, so does intrauterine growth retardation (IGR). Taybi-Linder syndrome has been associated with incipient diabetes, electrolytic imbalances and hypothyroidism. Additionally, other symptoms to look for are hypothalamic disorders, micro-penis, and hypogonadism.

This syndrome is often fatal in the first year of life. With improved genetic testing, some individuals are diagnosed later childhood and adulthood. However, they all have significant symptoms.

PHYSICAL FINDINGS FOR TAYBI-LINDER SYNDROME

Physical findings for Taybi-Linder syndrome may include:

• Distinct facial features including sparse hair and eyebrows, sloped forehead with protruding eyes, and a flat nasal bridge with a small jaw;
• Dry skin;
• Seizures;
• Intellectual disability; and
• Brain abnormalities including lissencephaly (smooth brain), hypoplastic frontal lobes, agenesis of the corpus callosum or cerebellar vermis.

YOU CAN SUGGEST NEW COMPASSIONATE ALLOWANCES 

The SSA adds new compassionate allowances to the list of diseases throughout the year. It is important, if you have a rare disease, to add it to the list. If you are a doctor or healthcare worker who knows of rare diseases, you can also request to add new compassionate allowances.

You can see from the above list that the conditions on SSA’s list are rare. They are also severely disabling and can result in an early death. The SSA’s website contains a page that allows you to submit potential new compassionate allowances. Furthermore, the SSA relies on advocates to bring attention to conditions that may be severe enough to qualify for the list.

While conditions on the compassionate allowances list are severe, that does not mean that all of the conditions results in death. If you have a medical condition that is terminal, then that is a TERI case. TERI stands for “terminal illness.” Tell you attorney if your doctor diagnosis you with a terminal illness. Your representative can then flag the case with the SSA as a TERI case. This requires the SSA to give your case expedited processing.

MEDICARE ENTITLEMENT AND PAYMENT DATES DO NOT CHANGE FOR MOST NEW COMPASSIONATE ALLOWANCES

Unfortunately, having a new compassionate allowances claim does require the SSA to make a quick determination on your case. However, unless you have end stage renal disease or ALS, the waiting period for your benefits to begin does not change.

This means, that despite the severity of your condition, if you apply for Social Security benefits, you will still have a five month waiting period before your benefits pay out to you.

Likewise, you must still wait for a full 24 months from the date you qualify for SSD benefits to receive Medicare coverage. Find out out more information about Medicare benefits.

LEGAL EXPERTISE MATTERS IF YOU HAVE A CONDITION ON THE NEW COMPASSIONATE ALLOWANCES LIST 

Many claimants applying for SSD benefits do not realize that they have a disability on the new compassionate allowances list. Similarly, they may not realize that their medical condition allows the SSA to give their claim to expedited processing. This is remediable.

If you have an attorney with legal experience, then they will recognize your case qualifies for special processing under the compassionate allowances program. Therefore, this is just one more benefit to hiring the right legal team.

Sadly, due to the severity of compassionate allowances claims, many people pass away before being awarded SSD benefits.  If an individual does pass away and they have filed a claim for SSD benefits, then the living family members can continue the SSD claim.

In order to do so, you will need to submit paperwork for a substitution of party. Additionally, you will need to submit the claimant’s death certificate. If you need more information about this topic, then learn more what do to if the claimant dies and the family is seeking SSD benefits.

Even if the claimant was not yet approved for SSD benefits, surviving family members can still apply for SSD benefits if the claimant survived five months past their onset date of disability. In those cases, however, the application for benefits must be filed within 3 months of the claimant’s death.

Therefore, if you or a family member need help filing an application for benefits, then let us help you. The process of filing an application for SSD benefits isn’t easy. Especially, if you are grieving for a family member. We will work with you to get the application into the SSA.

THE NEW COMPASSIONATE ALLOWANCES LIST & HIRING THE RIGHT LEGAL TEAM

It can be difficult to prove that your medical condition is on the new compassionate allowances list. Even though it is difficult to prove, our law firm can help you win your Social Security benefits. We are happy to answer your questions. And, we will help you file your application for benefits. Contacting and talking to us about your case is free.

Likewise, we will not charge you an attorney fee unless we win your case. If we do not win your case, then you will not pay an attorney fee. This is the definition of a contingency fee. However, there are costs in every case that the client does pay. Those costs are minimal. Usually it is just the cost of paying for a copy of your medical records.

Unfortunately, many doctors are now using large companies to copy medical records. Those companies charge high fees. Despite that, we try to keep costs low for you.

But, you can help us by collecting your records in person. If the doctor uses a copy company, then it can cost a lot of money to get your records. We will do everything we can to keep your costs low during the Social Security review process.

WE CAN HELP YOU IF YOUR CONDITION IS ON THE NEW COMPASSIONATE ALLOWANCES LIST

Having a severe medical condition that keeps you from working is not an easy transition. You need money every month to pay your bills. Additionally, you need health insurance to take care of yourself. And, you need your benefits as soon as possible.

That is where we come in. Our lawyers can help you win SSD and SSI benefits under the new compassionate allowances list. Remember, there are many other compassionate allowances, like small cell prostate cancer, lung cancer, liver cancer or hypoplastic left heart syndrome. It is worth it to check the list and see if you condition is on it.

If you want to know more about our law firm’s lawyers and staff, then go to our About Us page. There you can read about our legal experience. For example, Andria Summers can help you understand the new compassionate allowances rules. Dianna Cannon has been winning disability cases for thirty years. Brett Bunkall also has significant experience helping people obtain their SSI and SSD benefits.

PUT OUR LEGAL EXPERIENCE TO WORK FOR YOU

In the past 30 years, we have won over 20,000 SSDI and SSI cases for our clients. Additionally, we have won many cases using the compassionate allowances list.