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UK-Based Benefit Support for those with Degenerative Cervical Myelopathy (DCM)

UK-Based Benefit Support for those with Degenerative Cervical Myelopathy (DCM)

In this blog we cover the financial burden that a chronic condition such as myelopathy can bring.

This week we speak to Shirley Widdop, an ex-Nurse that had to give up employment after being diagnosed with Cervical Myelopathy in 2012. Shirley is a very active member and an admin for myelopathy.org Facebook support group, Myelopathy Support, and has assisted a number of members that have found themselves in the same situation and helped them through the tangled web of the UK benefits system.

Shirley explains that living with DCM is life altering in many ways. A major concern for people that have been diagnosed with myelopathy or any similar chronic condition, is that not only do you have to deal with the challenges of living with chronic illness & disability, but you also have to look at the financial implications that it also brings.

When diagnosed, I was working part-time as a Home Help. However, it became physically impossible due to pain, fatigue & deterioration in symptoms.
I received Statutory Sick Pay, but, eventually, was obliged to apply for Employment Support Allowance (ESA). I was placed in the Work Related Activity Group (WRAG) after surgery, even though I was still recovering & the DCM had not resolved.

I was unaware I was entitled to anything else until informed by a concerned employment advisor about eligibility for the ESA Support Group and also Disability Living Allowance (DLA) (now known as Personal Independence Payment – PIP).

Both applications were denied by the Department of Work & Pensions, but, thankfully, I won on appeal. Being awarded DLA enabled access to other financial support of which I was also unaware.

Consequently, sharing such information is my passion. Dealing with DCM is difficult enough without worrying about finances. And because of this we are now putting together a benefit information section that can be found under the support section at myelopathy.org.

But we need your help. Despite being a very cosmopolitan group, benefit information for our international members is sadly lacking. Please help us to rectify this so all our members have access to the financial support they need. Thank you.

Disability Benefits / Advice UK

Information kindly collated and presented by Shirley Widdop on February 2018.

NOTE

Although Myelopathy Support aims to be a reliable source of information, we cannot accept any responsibility for the information provided. We also do not assume any responsibility for the use or content of any product or service
mentioned. Myelopathy.org is not responsible for any third-party content referenced, displayed or linked to or on the Myelopathy.org internet site. The inclusion of any link does not imply endorsement by Myelopathy.org of the site. Use of any such linked website is at the user’s own risk.

www.myelopathy.org

Myelopathy Increases Inflammation¹

Why was this study conducted?

Edited by BM Davies

Previous research¹ has demonstrated that patients with cervical myelopathy undergo an immune response. Additionally, proinflammatory proteins, called cytokines, are more present in cerebrospinal fluid in patients with cervical myelopathy and low back degenerative disc disease. Therefore, it is possible that some of these cytokines may be able to serve as blood markers of severity of cervical myelopathy.

How was the study conducted?

This was a comprehensive study involving both humans and animals to help investigate their research question.

In humans: Blood was collected from 40 patients with cervical myelopathy before surgery, 10 controls without myelopathy, and another group of 10 patients with myelopathy to serve as a validation group. From this blood they analyzed the presence of 4 cytokines.

In rats: These cytokines are also compared between healthy rats, and rats in which cervical myelopathy was recreated. The researchers also went on to administer a large dose of one of the cytokines (interleukin-6) in rats who did not have compression, so see what would happen. They looked at amount of motor function, pain sensitivity, tissue damage, and cytokine levels in the rats.

What was discovered?

Of the 4 cytokines examined, patients with cervical myelopathy had an increased concentration of interleukin-6 only. This was found in both groups of patients with cervical myelopathy. Interleukin-6 was moderately associated with mJOA scores and body mass index but not age or symptom duration. While interleukin-6 levels were higher than controls, they still were in the range of what is clinically considered “normal” suggesting that it was elevated but not THAT elevated.

Additionally, rats that had experimental compression of their cervical spinal cord had elevated levels of interleukin-6 in both their blood and cerebrospinal fluid. They also had lower motor function scores than rats without compression, increased pain sensitivity, and spinal cord damage. Interestingly, the rats that had an experimental dose of interleukin-6 had similar motor scores, pain sensitivity, and spinal cord damage to the rats with compression.

Why is this important?

This study importantly expands our knowledge of the disease process in patients with cervical myelopathy. Since the blood interleukin-6 levels were still in the “normal”, it may not be the best marker for diagnosing the disease, but it appears it could serve as an indicator of severity of the condition. It is also important because the study was done in a way that we can have substantial confidence that what they found was real. Science has a problem lately with being unable to replicate findings.² This study, on the other hand, replicated their own findings in humans and an animal model of cervical myelopathy.

Overall, this study highlights that inflammation may be an important component of cervical myelopathy, and therefore by extension anti-inflammatory therapy could have potential. There is still a lot more we need to explore with that though as some anti-inflammatory medicines can impair healing after a cervical fusion. Therefore, patients with cervical myelopathy shouldn’t start an anti-inflammatory regimen without consulting their surgeon!

Questions for discussion:

1. Have you noticed any benefits in motor function such as walking, grip, or balance while on anti-inflammatories?

Let us know in the comments!

 

References

1. Du S, Sun Y, Zhao B. Interleukin-6 Serum Levels Are Elevated in Individuals with Degenerative Cervical Myelopathy and Are Correlated with Symptom Severity. In: Med Sci Monit. Vol 24.2018:7405-7413.
2. Baker M. 1,500 scientists lift the lid on reproducibility. Nature News. 2016;533(7604):452.

A new way to detect myelopathy?

Edited by B. Davies


WHO: Researchers at the University of Southern California have conducted some exciting new myelopathy research
WHAT: The researchers have developed and validated a screening test for myelopathy

WHY: In medicine there are 2 types of tests: screening tests and diagnostic tests. Screening tests tend to be quick, safe, require few resources and are appropriate to use on a very large scale, for example all people at risk of having a particular medical condition who may not have any symptoms Diagnostic tests tend to be more complicated, more expensive, most time-intensive and have great risks for patients. Screening tests are ideal for picking up disease in people without any symptoms to catch things early. People who have positive test results are then referred on for further diagnostic testing to confirm whether they have the particular medical condition. Diagnostic screening then, is used in people who we have a high suspicion might have a disease, either because they have a positive screening test of because they have symptoms.

Getting back to myelopathy, there are currently very effective diagnostic tests, based on a combination of a doctor’s history taking, physical examination and an MRI scan. However, there are currently no screening tests for myelopathy. Putting this in the context of the subtle symptoms of myelopathy (Davies et al., 2018), the fact that myelopathy is currently being diagnosed too slowly (Behrbalk et al., 2013), and the duration of symptoms before diagnosis are thought to be the most important factor determining how well patients get on in the long-term after surgery (Ebersold et al., 1995), a myelopathy screening test sounds a brilliant idea!  

Developing and testing such a screening test is exactly what the researchers have done!

HOW: The researchers developed a 4-question test based upon previous research and their experience of the most common DCM symptoms. The test involves asking the patient each of the four questions. The four questions are:

1. Have you noticed that you are dropping things or that your hands feel clumsy?

2. Have you felt more off-balance or unsteady on your feet? 

3. Do you feel weakness in one or both of your arms or hands?

4. Do you feel numbness or tingling in one or both of your arms or hands?

The researchers called the test the DOWN test (see words in bold).  If the patient answered yes to a question this was called a positive answer and if they answer no this was called a negative answer.

The researchers then asked the questions to 46 myelopathy patients and 46 patients who did not have myelopathy. This study design is called a case-control study.

FINDINGS

The researchers experimented trying different combinations of how many responses to the DOWN questionnaire had to be positive to define a positive overall test result. There are various measures that can be used for this. Bear in mind that with any test there is always the risk that the result might be positive because a patient has another medical condition, or due to chance, rather than the medical condition that the researchers are interested in. Therefore, researchers use a combination of statistical measurers to check how good a test is. One measure is called sensitivity, and this tells researchers how good a test is at identifying people with a particular medical condition, for example myelopathy. Another measure is specificity, which tells researchers how likely a positive result is to be because of myelopathy rather than being positive because of another medical condition or due to chance. 

So, a test might be very sensitive because it is positive for nearly all myelopathy patients but at the same time not be very specific because it is also positive for many patients with other medical conditions. This would mean that we could be reasonably sure that someone doesn’t have myelopathy if they have a negative test but if they have a positive test, we cannot be sure whether they have myelopathy or another medical condition, or no condition at all. 

Ultimately there is a trade-off between sensitivity and specificity – the better you make a test at identifying all cases of a particular medical condition (increasing the sensitivity) the better it becomes at identifying people with other medical conditions (decreasing the specificity). High sensitivity is desirable in a screening test to act like a net to catch as many patients as possible who have myelopathy. We can then use other tests to rule out those who do not have it later. However, this approach is not without problems, especially as it will inevitably involve a lot of unnecessary anxiety for patients with positive screening tests who later turn out not to have the condition after all. 

In the end, the researchers recommended using cut-off of 3 positive answers to define an overall positive test result, meaning a patient is likely to have myelopathy. 

Researchers found that patients with myelopathy had higher DOWN scores than those without myelopathy and that patients with 3 or 4 positive responses were significantly more likely to have myelopathy. They found that 91% of patients who had 3 positive questions had myelopathy. They showed that the DOWN screening test is accurate identifying patients with myelopathy. 

SO WHAT?: Myelopathy is very difficult to diagnose early. Most patients present with subtle symptoms to general practitioners, who have very broad medical knowledge but do not have the same expertise in myelopathy as spinal surgeons. The development of the DOWN screening test has great promise to screen patients, facilitate earlier diagnosis, and reduce suffering for patients. Increasing age is a risk factor for myelopathy, which is predicted to become commoner with ageing population. This makes all the more need for a test like the DOWN test.

NEXT STEPS: the current study was conducted on a relatively small number of patients who were part of a very well-defined group attending a specialist spinal service. Given that the DOWN test will be used mainly by general practitioners on the general population, a follow up study is needed to check the results in a larger and more diverse group of patients. It may also be worth studying whether using different questions can improve the test.

Picture of a net

References

Behrbalk, E., Salame, K., Regev, G.J., Keynan, O., Boszczyk, B., and Lidar, Z. (2013). Delayed diagnosis of cervical spondylotic myelopathy by primary care physicians. Neurosurg. Focus 35, E1.
Davies, B.M., Mowforth, O.D., Smith, E.K., and Kotter, M.R. (2018). Degenerative cervical myelopathy. BMJ 360, k186.
Ebersold, M.J., Pare, M.C., and Quast, L.M. (1995). Surgical treatment for cervical spondylitic myelopathy. J. Neurosurg. 82, 745–751.

A new audience for Myelopathy.org

Awareness of myelopathy among non-specialist doctors is not as good as it should be. This fact is at least partly to blame for many patients being misdiagnosed, diagnosed too late or not diagnosed at all. This must change.

At the beginning of September 2018, we launched a Myelopathy.org Student Society. The aim of this new part of Myelopathy.org is to target current medical students, who are the doctors of tomorrow.

Professor Hutchinson with myelopathy students
Professor Hutchinson answering students’ questions after his talk

 Our society aims to improve myelopathy education in UK medical schools, to raise awareness of myelopathy and to get students and doctors interested in and enthusiastic about myelopathy!

So far we have hosted several academic talks in the School of Clinical Medicine, University of Cambridge. Highlights from our first term include an inspiring talk on neurosurgical careers from Peter Hutchinson, Professor of Neurosurgery in Cambridge and a fascinating talk from Consultant Neurologist Dr Sybil Stacpoole on spinal disorders for medical students, which included a wealth of interesting real cases, including myelopathy. Our talks have been very popular with attendance averaging over 50 students and junior doctors per talk!

We have established two annual Myelopathy.org student awards: an essay award and a research award. These are open to all UK medical students. We are excited about the interest and enthusiasm these awards will stimulate in myelopathy.

We have been successful in securing generous sponsorship from several corporate sponsors. Doctors Academy have provided us with refreshments for our events and prizes for our national awards; JP Medical and Pastest provided us with prizes for our national awards; generous funding donations have been made by Wesleyan and the Medical Defence Union. We are incredibly grateful for the generosity of all our sponsors and so excited by the interest in Myelopathy from these significant medical companies!

Dr Stacpoole teaching myelopathy
Dr Stacpoole’s teaching on myelopathy was met with great enthusiasm.

Finally, we are leading a national myelopathy research study and are delighted that to have recently received ethical approval and insurance to commence in the next few weeks. More information to follow later this year!

Please look out for our upcoming updates on our section of Myelopathy.org, like and follow us on our Facebook Page and keep up to date with our upcoming activities. You don’t have to be a medical student to join in!

Prizes for students by myelopathy.org
Some of the prizes for the Myelopathy.org national medical student awards

Ageing increases impact of spinal cord compression

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FEM (Finite Element Method) analyses the impact of mechanical loads e.g. ‘stress’. It was principally used in engineering (for example aerospace), but increasingly also medical research

At the moment, we do not have medical investigations which are able to represent accurately the significance of spinal cord injury.  For example, you could have two patients with exactly the same MRI changes, one who is without symptoms and the other who is severely affected. 

This is a major challenge for researchers, with many exploring new tools to provide better assessment methods

However, amongst this confusion, age seems to be important as the number of people with symptomatic cord compression increases with age.  Moreover, some have shown that age can affect response to surgery.  

A group from Japan have been experimenting using a preclinical (animal) model, to investigate how spinal cords of different ages react to the same compression force.  Using a technique called Finite Element Method, more typically used in engineering, they have shown that in an older spinal cord the same amount of compression causes a much higher stress to the spinal cord tissue, than in a younger spinal cord.  This was the same for sudden or slow compressive forces. 

​ Of course this experiment has not been conducted on human spinal cords, but the findings are in keeping with a wider experience of aging and CSM and is a further reminder of the need for more sophisticated tools to represent the extent of spinal cord injury in CSM.  

Reference

1. Okazaki et al. Age‐related changes of the spinal cord: A biomechanical studyExperimental and Therapeutic Medicine 2018

Addressing recent concerns about Myelopathy.org and affiliated surveys

A message from the director

Concerns have recently been raised with regards the legitimacy of the Health Surveys hosted by Myelopathy.org and I would like to address these directly.
 
As you are only too aware, Myelopathy is a condition which faces a number of significant challenges including lifelong disability, widespread misunderstanding and under-recognition, and a lack of clear information or support.   Myelopathy.org was founded to address these issues and become a rallying point for change. 
 
We see research as an important part of delivering change and support projects that can advance our understanding.  As the largest ever Myelopathy community, your shared experiences have a lot to offer researchers, and therefore health surveys have been a prominent part of our research arm.  So far, more than 2000 people have shared their experiences, making these some of the largest ever studies in Myelopathy.  That data is still being processed, and we look forward to seeing the results soon, but this in itself is a testament to what we can achieve together.
 
As an organisation we recognise the power of this community and are committed to its responsible management.  In this respect, all research associations and projects have been and are expected to meet our ethical standards.  This includes adhering to our code of conduct, providing appropriate regulatory approval and practicing safe management of personal data.  All proposed surveys are first piloted and approved internally.
 
Looking through our research section today, I can see that this oversight is not as explicit as it should be, and we will be introducing clearer documentation to correct this.
 
We are a very young organisation, developing and learning as we go along but in a short time we have made great in roads; I remember when we first launched, canine myelopathy was the prominent feature of google search results, but now our myelopathy has come to the forefront.    
 
There is still a long way to go, but it will be together that we can drive change and not as individuals.  The internet has provided a platform for us to come together, but we must remember that it can also have the potential to divide us: both as an organisation and as individual members we all must act responsibly.  In that regard, if you feel any of our actions or the actions of our members questionable, please get in touch directly.
 
Thank you for your ongoing support.
 
 
Benjamin Davies
Director Myelopathy.org  

Headaches more common in CSM

​Cervical spondylosis, more than a pain in the neck?

by J.Hamilton

For some migraines is just another word for headache, but in medicine it refers to a specific type of headache characterised by severe head pain that can last from 2-72 hours, are a common disorder and can be incapacitating to people who suffer them. Migraines are common, with estimates suggesting up to one billion people are affected worldwide. Various triggers may cause migraines, causing a sequence of events that lead to head pain. It has been suggested that cervical spondylosis, the degeneration of the bones of the neck, may initiate migraines, but little research has been done on the topic.

With this in mind, a group at the China Medical University wanted to determine if there was an association between cervical spondylosis and the likelihood of suffering from migraines. 

​How was it done?

​The group used a health insurance research database in Taiwan.  From this database,  a group patients with and without cervical spondylosis were selected.  The group without spondylosis were matched, such that they had similarly ages, genders and presence of other illnesses such as diabetes.  Over the next 10 years, between 2000-2010, the patients who developed migraine were noted. At the end of the study, the group looked at the relative risk of getting migraines and compared them between the groups.

Do you suffer from headaches or pain and have CSM?
Researchers from the University of Cambridge what to hear about your experience


​What were the results? 

​The group of Spondylosis sufferers numbered at 27,000, compared to 111,000 without spondylosis. When they looked at the rate of people acquiring migraines each year, they found that out of those with Spondylosis, 5.16 people out of 1000 per year acquired migraine, compared to 2.09 per 1000 people per year in people without spondylosis. When they looked at the risk of getting migraine, using a statistical method known as “hazard ratios”, which compares the relative risk of getting a migraine between two groups, it was found that comparing patients with and without spondylosis patients gave a risk of 2.03. This means that people with Spondylosis are twice as likely to develop migraines as those without. When looking at the data more closely, the researchers found that this risk was further increased in patients with myelopathy and spondylosis as opposed to spondylosis patients with no myelopathy.  As expected, they also found that women and younger individuals were more likely to develop migraines, a well described association.

​How could this happen?

​Although headache has not been considered a ‘classical’ feature of neck disorders, it has been proposed for many decades that neck disorders can cause headaches.  This led to the creation of a condition called ‘Cervicogenic’ Headache (literally ‘neck generated headache’).  For some professionals this remains a controversial condition, as how a neck condition can cause a headache remains unclear.  The proposed mechanism is based on something called ‘sensitization’, a well described pain process by which the regular perception of pain can alter the ‘wiring’ of the brain and spinal cord, make them more sensitive: so what once felt like a tickle, could become more like a stab.  For Cervciogenic headaches, the theory is the neck pain from spondylosis is the regular pain, and because the pain pathways from the neck are shared with some of those of the head, these wires can cross and lead to headaches.  This has previously been discussed by Dr Lavin, Neurologist for Myelopathy.org, including an alternative theory related to altered blood flow.  

​What does this mean for Myelopathy sufferers? 

​This study is part of a number of recent articles helping to shine the spotlight on headaches and CSM.  Whilst it cannot show exactly why it happens, the association is becoming harder to ignore and makes it less likely to be simply a coincidence.    Hopefully these studies will help to raise the profile of headaches in CSM, to trigger the research necessary to further understanding and develop treatments – watch this space!
 
In the meantime, some small things that can minimize your risk of migraine include: remain well hydrated, reducing your caffeine intake (although some people find caffeine helpful), as well as ensuring a regular sleeping habit. 

Investigating exercise after anterior cervical discectomy: what should we advise?

My name is Dr Teena Fernandez. I am a GP in North Wales currently undertaking research as part of my Masters in Sports and Exercise Medicine at Nottingham University. During my studies my husband sustained a cervical spine injury resulting in a 2 level anterior cervical discectomy and fusion and we found little advice or evidence on returning to sport following such surgery.

Can you help researchers from the University of Nottingham?


We did not know if he could go dog walking, do martial arts or do manual labour for 2 hours a day? I subsequently undertook research which only identified expert opinion on returning to sport. I have now (with the help of a neurosurgery consultant) decided to find out how people return to sport following 2 level anterior cervical discectomy and fusion.

I plan to undertake a qualitative project interviewing approximately 8-16 participants to find out whether they have returned to at least 2 hours of exercise a day following the surgery. I would like to know whether they developed problems such as neck pain or pain or loss of function of the arms and legs with exercise.

Being a GP, I hope I can interpret the interviews and help people who require advice on getting fit after surgery. 

Please have a look at my advert and get in touch if you would like to be involved.

Dr Teena Fernandez
MBBS MRCGP DFFP DRCOG BMEDSCI PGCE

Why does this matter? A word from the director

The role of exercise after surgery in CSM is largely unexplored.  However there is much to suggest that it can enhance recovery; indeed this is well demonstrated in animal studies of spinal cord injury, underpins the basis for spinal cord injury rehabilitation centres and is starting to be evidence based in traumatic spinal cord injury.  So at Myelopathy.org, we are pleased to support this research study.   It should be noted, that this study is not just for CSM and looks in particular at higher performance athletes (exercising more than 2 hours per day), but no doubt this will have some relevance and we look forward to seeing the results.    Ben Davies, Director Myelopathy.org  

Worried about participating in research?

Myelopathy.org ensures all affiliated research meets UK Research Standards.  A useful video has been prepared by  Connected Health Cities and The Farr Institute to provide an overview of how health research is conducted and overseen in the UK, including how your data is looked after and used.  If you have any further questions or concerns, please get in touch. 

In search of Myelopathy man

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By Delphine Houlton 
Our Facebook Myelopathy Support group, founded by Iwan Sadler, now has more than 1,000 members worldwide.
A great success story which is set to grow as awareness of Degenerative Cervical Myelopathy (DCM) increases. 
There is little doubt that social media is revolutionizing health care. A US study by Pricewaterhouse Cooper in 2012 showed that one third of US consumers use social space as a natural habitat for health discussions. Meanwhile a 2010 report by the Pew Internet and American Life Project showed one half of e-patients living with chronic diseases take advantage of user generated information.

Using this research and more, Pius Boachie writing for http://www.adweek.com/digital/ demonstrates the importance of Facebook groups for people with health issues sharing experiences, offering support and raising awareness and funds.
Social media has also given patients opportunities to vent their frustrations and anger as well as following up issues keeping healthcare providers on their toes.
But it is not just of benefit to the patients. Pius Boachie claims 88% of doctors use social media to research pharmaceutical, biotech and medical devices, and 60% of doctors say social media improves the quality of care delivered to patients.
However, at Myelopathy Support we are facing a challenge and one that not only Iwan has noticed. Our Facebook group has attracted many more women than men. In fact, 76.7% of Myelopathy Support members are women and just 23.2% men!
The specialists tell us that DCM does not discriminate between the sexes, so what is going on?
According to research by Statista, women have been leading the way on the major social media platforms, such as Facebook, for a long time but the gap is narrowing. Now the USA has 230 million Facebook users of which 52% are women and 48% are men. 
So, men are aware of Facebook and interacting but there is a possibility they are using it differently. At least this is an argument presented in www.socialmediatoday.com in 2016.
The authors say research reveals men are more likely to use social media to seek information or new relationships while women use platforms such as Facebook to connect with people and nurture existing relationships. 
Women are more likely to share personal issues while men prefer more abstract topics. On a more negative note, men were much more commonly trolling on social media or engaging in aggressive and even abusive language. In conclusion, they accept that men and women communicate differently.
This sort of argument can be compelling along the lines of the popular Men are from Mars, Women are from Venus theses. I’m not a huge fan not least because I favour nurture over nature and see most styles of communications as culturally constructed with culture very clearly an ongoing process – a verb and not a noun.
Irrespective of my preferences, we do face the challenge of attracting more men to join and to benefit from the information, support and expertise available at Myelopathy Support on Facebook.
Should we be doing more on YouTube (54% male users) who spend, on average, twice as much time as women do on the site per week? Should we signpost the vast amount of detailed information available at Myelopathy Support more clearly? Should we run an invite-a-man initiative or offer a prize to the 500th man to sign up?
All suggestions gratefully received!  Email: info@myelopathy.org



Thinking about applying for disability in the USA?

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Here are a few helpful things to get you started. 
Firstly  you need to  go  the Social Security Administration page. You can apply online, or have the forms sent to your home.  

Social Security Benefits (SSI)
As far as Social Security benefits, SSI is a set disability amount which is awarded for those who have not worked enough years or haven’t paid enough social security tax into the system. For example, the maximum amount right now is $750/monthly. SSDI benefits are disability benefits awarded based on wages over the years and paid into Social Security.  You could range anywhere from a couple hundred to a couple thousand dollars monthly. Both benefits are issued through the social security administration. 

You need to be deemed disabled for an expected period of at least 12 months. For disability, benefits, especially SSI, most applicants are denied the first time. That’s typically when one obtains a lawyer to handle the appeal. It just seems to be common practice.  It can take months to finally get approved.  Obviously depending on the level of severity, but  it can take anywhere from 6 months to a little over a year. 

Medical Coverage
As far as medical coverage, there are programs through public welfare and types or medical coverage available associated specifically with disability. One is directly related to SSI recipients, one is disability clients with no income/awaiting benefits, there is one for those who work but fall under certain income limits, one for those receiving SSDI who fall under certain income limits, and for those who receive SSDI and receive Medicare part B through social security – if they make too much to qualify for the welfare medicare, there’s another income limit to see if welfare will at least pay their Medicare B monthly premium amount, so they would at least have that premium amount back in their pockets in the SSDI check.  All of those types of medical are applied for through Dept. Of Human Services /formerly Dept. Of Public welfare. 

Cash Assistance
 If anyone in the US is looking for cash assistance while awaiting disability, they can also apply through Dept Human Services.   For example, the guidelines to qualify for cash assistance benefits is that you have to have care/control of a minor child. So a parent/parents with custody.  The amounts are very low though, right now, if a parent of 2 applies for cash assistance, and has zero income, the maximum grant amount monthly for that 3 person household is only $403. Better than nothing but clearly doesn’t touch the bills. There are job search requirements with this program. But if you are disabled, you have a form completed by your physician and are waived from those requirements. We also have what is called a DAP- Disability Advocate Program, and they can help individuals seeking SSI throughout the process.

Each state has different programs to help the disabled offset costs. 
Some states have fuel assistance. Every year , a household gets a certain amount of money paid to their heat supplier for heating through the winter. 
Most disabled people , if qualified can get SNAP, which is the food stamp program. 

If you’ve got young children under the age of 5 , there is the WIC program which delivers food to low income mothers. 
If you are disabled, and get SSDI, your children get a small disability check also. That lasts until they are 18, or have graduated from high school. 
Most states have food banks, if you need food please use them. 
Churches also have programs for food, the elderly, and the disabled. Ask your pastor for any information or programs that could help your family. 

Helpful links: 
SSA.GOV
 
Disability Benefit Centre 

Information kindly collated and presented by Margot Miller and Melissa Rodriguez 
If you have any relevant information on the benefit  system  for the USA and would like to see it featured please get in touch: info@myelopathy.org 

All this information  is now available at www.myelopathy.org/disability-benefit-advice-usa.html