The Financial Burden of MS

For several of our community members, financial stress is one of the greatest challenges of living with MS. In addition to budgeting for out-of-pocket medical costs and everyday living expenses, it can be time-consuming (and sometimes stressful) to manage medical bills, insurance claims, and paperwork. Recently, we shared

about living on a fixed income, and our MS community members responded by sharing their own experiences with the financial burden of MS.

Managing Unexpected or Underappreciated Costs

“The COLA index does not reflect the expenses that the elderly or disabled must cope with.”

“Living on a fixed income, there is no way I can afford the the meds that are recommended.”

“MRIs copay with my insurance is $700. Takes me months to pay it off!”

“I need an MRI and hope this time I can afford it. Couldn’t get one last year because of the cost”

“The bills (even with insurance and a fulltime job) are tough to keep up with…. never ending”

As described by many of our community members, living with MS is costly, even for those with various forms of private insurance and/or public benefits. In a 2017 ‘Cost of Care’ survey, 77% of MS community members said that paying for care and treatment caused financial strain for their families, and over 50% of patients skipped or ‘stretched’ their medication to avoid the cost of refilling their prescriptions.1 For many community members, the out-of-pocket costs of medications, tests, and procedures far outweigh your family’s income, especially when Cost-Of-Living Adjustments (COLAs) do not match increases in premiums. While your private insurance and/or public benefits may cover some costs, according to many MS patients, these unexpected or unappreciated costs can be challenging for you and your family to manage.

While the financial strains of MS are all too real, many of our community members have offered their own cost-saving tips for dealing with MS. While some community members recommend asking your healthcare provider about less expensive or generic medications, other suggest calling your provider’s office to see if they have any drug samples for your medications. Other patients recommend researching financial assistance programs or looking for drug coupons (often available on pharmaceutical company websites), or even ‘shopping around’ for the lowest costs for prescription drugs, tests, and procedures.1</sup

Overcoming Stigma

“I overheard a coworker saying openly, ‘All sick people are costing healthy people too much’.”

“It’s an absolute disgrace to work all your life and pay into Social Security and then have ignorant fools saying we don’t deserve it like we’re getting billions of dollars a month…One diagnosis can change your whole world, but they don’t think it can happen to them.”

“We are sick and cannot work!”

For many patients, one of the most difficult financial burdens of MS comes in the form of shame, stigma, or judgement from other people. As many of our community members know, public benefits, such asSupplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), often fall short of the considerable costs of treating and managing a chronic condition. However, possibly due to the politics of government assistance programs, as well as a general lack of knowledge about MS, many of our community members have experienced ignorant remarks about the costs of public assistance programs, and even comments about what sick and/or disabled people do and do not “deserve”.

While it can be frustrating, angering, and downright hurtful to hear these stigmatizing remarks, only you and your family truly understand your financial situation, the challenges of MS, and what it’s like to rely on public benefits. While it’s unfair for anyone to discredit your symptoms and experiences, you may prefer to block-out these comments in favor of listening to the people who actually understand what you’re going through, such as family, friends, and fellow MS community members.

“Retirement”

“I was diagnosed in 2001 and worked up until 2013… I worked hard all of my life and loved every job that I had”

“Every day I wish I had the capacity to work”

“MS took my career and the ability to support myself… I worked hard to get an education and my career”
“I had to take early retirement due to my MS”

“Within one year of diagnosis, I was forced to quit my job. I couldn’t afford my medication because my insurance copay for it was too high and I have had severe reactions to other medications.”

For many people with MS, “retirement” has a different meaning than it does for the general population. As described by some of our community members, your MS symptoms forced you to work less or even stop working earlier than you had wanted or planned, leading to frustration, as well as financial strain. Along with the loss of income to cover your out-of-pocket medical expenses, many patients share that they miss being able to go to work and accomplish something every day, leading to emotional challenges, as well as financial ones.

If you are no longer able to work due to MS, it is important to apply for SSDI as soon as possible, given the process can take some time (see below). If you’re experiencing feelings of frustration or isolation> due to no longer working, you can also reach out to the MS community for additional help and support.

Getting Disability Benefits

“I’ve been waiting 3 years for my disability… it’s been 2 years waiting for my court date”

“SS ROUTINELY denies ALL 1st time requests – you have to hire a lawyer.”

“A confirmed diagnosis of MS should be enough [to get SSDI]”

“It took me two years to get my SSI disability benefit… I had a lawyer, but it still takes a super long time…. I was in front of a judge just to argue to get my own money”

For some of our community members, one of the biggest financial challenges of MS has been applying for Social Security disability benefits. Typically, applying and being approved for SSDI or SSI requires gathering and organizing all of your medical records, as well as coordinating with your healthcare provider so that he/she can sign-off on your request. After applying for SSDI or SSI, several community members initially received a denial, requiring them to start an appeals process. If you need to appeal a SSDI/SSI denial, many of our community members recommend hiring a lawyer or advocate to guide you on the appeals process, which usually includes a court hearing to plead your case. While your lawyer or advocate will charge a fee, many do not send a bill until after your appeal is granted. According to some of our community members, you can also contact your senator or congressperson to (hopefully!) speed up the appeals process.
For people living with MS, financial burdens can come in all shapes and sizes. While some of you are dealing with unexpected or underappreciated costs, others are facing the need to stop working, or the ignorance of others who stigmatize public benefits. If you’re experiencing financial difficulties related to MS, we encourage you to contact the MS community for help and support, and share your story today.

Works Cited

  1. Editorial Team. “Show Me (more than) the Money! Results from the Cost of Care Survey.” MultipleSclerosis.net, Health Union, 30 Jan. 2017, multiplesclerosis.net/infographic/cost-of-care-survey-results/. Accessed 29 Mar. 2018.
Share

Caregiver Wellness

Caregivers are some of the most important people in the world. They dedicate themselves to caring for someone else with their time, commitment, sacrifice, and compassion. Being a caregiver to someone else means they don’t always have the time to care for themselves. But everyone’s wellness and care are important, especially for those who need to be there for another person. Caregiving is an enormous task that can stretch people thin and make it difficult to carry out or even think about one’s own wellness. It’s no one’s fault – there is only so much time in the day and when the majority of that time is focused on someone else’s care, a caregiver’s own wellness and physical well-being are often just put on the back burner. The same is true of parenting/family roles and helping professions; others needs are simply put first, without question or expectation.

Caregiving doesn’t necessarily mean that person has to do everything themselves either. Knowing when and how to ask for help is a great strength, and for caregivers there are resources that can help. Oftentimes these resources are geared towards those caring for someone elderly, but it’s these same types of contacts that can help those caring for disabled individuals too. Communication is vital in the caregiver role; being able to talk about what is needed or what’s currently going on is essential to maintaining balance and stability. One key element to caregiver support is respite; a period of rest and relief for those carrying out this role. It’s also a significant piece to wellness – taking a break to focus on one’s own needs and having the peace of mind to know that the person they care for is safe in that moment too. It’s not a selfish act by any means; it’s a necessity of life. You have to take care of yourself in order to be able to take care of someone else. Selflessness is an admirable quality but self-care is equally important.

Image result for caregiver

 

Share

The Invisibility of Disability

5966

Communicating the full impact of MS to friends and family is a daunting, and often frustrating, task. Looking fine and being fine are two very, very different things.  This concept rang especially true for our phenomenal contributor, Matt, so he wrote an amazing article titled “Please, Tell Me Again How I’m NOT Disabled”

Our community completely agreed and responded with abundant feedback. Here are just some of the frustrating experiences encountered by our MS community:

No, you don’t “understand”

  • I get easily frustrated when a close friend or a direct family member would say they understood, and then get mad or angry when I’m having a relapse.
  • I’m in the painful process of a relapse and my family doesn’t understand the facts of any of this. Especially the fact that NO ONE is more frustrated than I am.
  • If you don’t understand, at least be human and try. That’s all we ask.
  • Sometimes I want to scream, “Stop telling me you understand when you have no idea!” 

I might look fine, but I’m not

  • I look normal but feel destroyed inside.
  • When people tell me I look fine I just respond with “that’s because I don’t wear my brain and spinal cord on the outside.”
  • Had to “talk” to my relatives to tell them that just because you look normal doesnt mean you feel normal.
  • I just hate the “you look good” comment. What should I look like?

I’m not lazy!

  • When your support system doesn’t ‘get it’ and accuses you of laziness, it is infuriating. I hate not being understood.
  • I tell myself how pathetic and lazy I am. I don’t need to hear it from everyone else.
  • I can’t live up to your expectations. I can’t even live up to mine, and it’s so frustrating.
  • It’s amazing to me that people with MS have to fight so hard to “prove” just how disabling it can be

How about you? How has your experience been communicating to friends and family about your MS?

Share

Stick to YOUR OWN agenda

During this month’s blog posts we’ve had discussions relating to resolutions, changes, and goals for the new year ahead. While many people work hard to create their own plans and generate new goals to achieve, some individuals try to impose their own agenda onto others—with the expectation that the objectives they envisioned for that person will automatically be met.

Some of us are not complete strangers to this situation; especially if during your childhood or adolescent years you had parents or other figures hold you to complete certain tasks and require the execution of specific goals. This is usually not done in malice, but rather people wanting the best for others and for them to perform at their highest level of potential. However, for individuals experiencing an illness or disability, these anticipations can be overwhelming and burdensome at times, especially if they don’t match with their abilities and skillsets. Everyone is different and is capable of different things.

Even though it’s done with good intentions, others expectations can sometimes take over one’s own agenda completely, leaving their own goals and aspirations on the sidelines. It’s difficult trying to meet others’ goals for what you should or should not be accomplishing, and it can be downright exhausting trying to satisfy others in this manner. That’s why it’s important to stick to your own plans and agenda—to realize your abilities or limitations and to strive forward with this thoughtfully in mind. You can take others suggestions, if asked for, to take into consideration when you’re forming your objectives, but they should be your own and done on your own terms. It’s hard to please everyone, but if at the end of the day you are comfortable with the decisions you’ve made and the feats you’ve conquered, I’d say to chalk that up as a win!

Share

Election Day and Disability Voting Related Concerns for the MS Community

While most of the media has already turned their attention to the upcoming Presidential Election, it’s worthy to note that there are still important issues and elections occurring this Election Day, Tuesday November 3rd.

Voting provides us the opportunity to weigh in on the issues that are most important to us as well as how our hometown and state are governed. For those living with disabilities, following and supporting elected officials with similar goals in mind is critical. For example, many who rely on public transportation as a means to get around town should know which officials support expanding transportation services, versus those who may plan to shut them down.

We have the power to create change through our votes. While on a local level it may seem insignificant, state level policies have a way of affecting those living with disabilities. Disability Rights organizations often open up their phone lines on Election Day to help answer disability related voter questions. Contact your local Disability Rights group to learn how you may be affected in this upcoming election.

Having an issue getting to the polls? Visit our Accessible Voting blog for information and guidance around access issues.

Happy Voting!

Share

National Preparedness Month

September marks the observance of National Preparedness Month, a time when individuals are encouraged to make safety plans and preparations in case of emergencies, such as natural disasters, for the protection of themselves and family members.

Family standing outside house illustration

With the atypical weather conditions experienced throughout different parts of the country this year especially, like the harsh winter months and peculiar storms, it is important to have emergency plans in place to prepare for such conditions. Discussing strategies with your family members or neighbors can help to increase cohesiveness and coordination when planning for emergency situations. Individuals with disabilities should develop strategies that will accommodate personal needs in case of an emergency as well, including how to move within the household if the power were to go out and safe exit strategies if you need to evacuate the home.

Websites like the Centers for Disease Control and Prevention and ready.gov provide information and materials for individuals to make plans and build safety kits for emergency preparedness.  Here are some additional tips to consider when creating emergency plans:

  • Develop a plan that is accommodating for everyone’s needs in the household. If someone has a disability, try to consider and incorporate those needs into emergency plans and evacuation strategies.
  • Ensure all household members are aware of the plans and what their role is in implementing them.
  • Stay informed about emergency preparedness by checking media and news sources often.

Increasing awareness of how to protect yourself and the ones you care for in an emergency can aid in making thoughtful and careful decisions in unexpected situations. Take this time to learn more about National Preparedness Month and educate others as well!

 

Share

Assistive Technology for Individuals with MS

Over the course of years living with a disease such as MS, there may come a time when more assistance is needed to complete daily activities. Perhaps typing on the computer is becoming a challenge due to spasticity, or driving a vehicle has become difficult because of numbness in the leg. While it may not always be conducive to ask another person for help, perhaps a piece of equipment can aid in getting the task done more effectively. Assistive technology, or AT, is any item, piece of equipment, or software that is used to increase or improve the functional abilities of individuals with disabilities at school, work, home, and in the community.

Young woman with tablet computer and coffee

Assistive technology devices can assist those who may have difficulty with speech, typing, writing, cognition, walking, etc. In each state, a State Assistive Technology Project is available to provide information on assistive  technology and consultation about the type of technology piece that may be helpful. A borrowing program may also be available where the devices can be borrowed for up to a certain period of time to see if the device will be effective. Information about available loans to help with more expensive devices can be discussed as well.

In trying to determine the type of device that may be helpful for a specific need, working with a rehabilitation professional such as a physical or occupational therapist might help to clarify the type of device that would provide the best assistance. They can make specific recommendations of devices that can assist with a variety of needs and may also help with checking whether insurance will cover the item recommended.

What assistive devices have you used? What avenue did you take to receive the device?

 

Share

Identifying Community Resources for Individuals with MS

Working on the MSAA Helpline, we receive a wide array of calls asking for assistance locally within the community. Whether it is for in-home services, help with transportation, or housing assistance, the Helpline specialists work with the client to find a local group that can be of assistance. While it is challenging to find an MS-specific organization in the area, there are some local organizations designed to assist those living with a disability to keep them living independently in their homes.

One of the more common programs Helpline Specialists refer to is the Centers for Independent Living. These non-profit centers are consumer-controlled and located right in the community or surrounding area. These centers are staffed by individuals with disabilities and provide a variety of independent living services.

Fifty-one percent of staff, as well as the Board of Directors, within the Centers for Independent Living are individuals with disabilities. These centers provide four core services: information & referral, independent living skills training, individual and systems advocacy, and peer counseling.

While not MS-specific, the Centers for Independent Living understand the challenges faced when living with a disability and can make suggestions or provide direct programming to improve the quality of life of those living within their regions.

Search for your local Center for Independent Living and reach out to learn about the opportunities and assistance that may be available to you and your family. It can be challenging to reach out for help and support, especially if you are not quite sure of the need you may have. Start by talking with one of the peer counselors or support persons; in talking with them, you both may be able to clearly define some of the needs you may be having.

Have you reached out to community resources in the past? In which ways were they helpful to you?

Share