Finances and MS
By Laurie Long, MSA
10/05
You were living your little piece of the American dream. You had a decent job, a solid career, money in the bank, a home, a car and your plans for the future. Then MS crept into your life, and your now future plans have been replaced by unanswered questions. What happens if you can’t work anymore? What are you going to do about your finances? How will you pay your bills and medical expenses? What will you do for insurance?
We hope to address at least some of the many issues facing you, and give you some options and places to turn to for answers.
Work: If you are having difficulties in your job because of problems brought on by MS, you may be able to adapt your workplace conditions and hours. Enacted in 1990, the Americans with Disabilities Act (ADA) states that you are allowed “reasonable accommodations” to enable you to do your job. The Job Accommodation Network (www.jan.wvu.edu / 800-526-7234 ) provides information on the ADA, accommodation solutions, self-employment and more. The Washington Initiative for Supported Employment (WISE) provides assistance and referrals for people with disabilities in finding a job, as well as consulting about ADA law (www.theinitiative.ws / 206-343-0881). The Alliance of People with Disabilities is another resource which provides information and assistance on ADA questions (www.disabilitypride.org / 206-545-7055).
If you think you may have a case of discrimination due to your disability you can contact the Office of Civil Rights (Seattle: www.ci.seattle.wa.us/civilrights/ / 206-684-4500) (King County: www.metrokc.gov/dias/ocre/ / 206-296-7592 ). You can also contact the Equal Employment Opportunity Commission (EEOC), a federally run program which enforces and interprets ADA as it relates to employment. Their local Seattle number is 206-220-6883 (TTY 206-220-6882). Their national number is 1-800-669-4000 and their website is www.eeoc.gov. You can also hire a private disability attorney to handle your case.
If your symptoms make it impossible to stay in your current job, then you may be able to retrain in another field or in an area that allows you to work from home. The Division of Vocational Resources (www1.dshs.wa.gov/dvr/ Seattle: 800-622-1375) is a state program under the DSHS mantle. They offer individuals with disabilities assistance in getting and keeping jobs, but please note that the waiting list for their services may be long. The Neurological Vocational Services at the University of Washington has a vocational services program designed to assist individuals with MS with vocational concerns (206-341-4545). The Job Accommodation Network also provides information on vocational rehabilitation services by state: http://www.jan.wvu.edu/SBSES/VOCREHAB.HTM
SSDI and SSI: If you’ve lost your job or can no longer work because of your disability, then you will need to apply for Social Security Disability (SSDI). There is no waiting period - you can apply the day you leave your job. The application form, however, is extremely long, complicated and difficult to fill out to the satisfaction of those reviewing applications. In fact, over 60% of new applications are denied.
The MS Association (www.msakc.org / 206-633-2606) is one of the few places offering help in navigating the SSDI application form. We give three SSDI workshops each year, and also provide SSDI counseling and assistance. The Alliance of People with Disabilities (www.disabilitypride.org / 206-545-7055) can also provide SSDI answers. If your applications and denials have already progressed further, you may want to contact an SSDI lawyer to advocate for you. The MSA can suggest local SSDI lawyers with excellent reputations. Online the National Organization of Social Security Claimants' Representatives (NOSSCR) will provide information and assistance on SSDI and SSI questions (www.nosscr.org / 800-431-2804). Other helpful disability websites can be found listed on our Links page (www.msakc.org/General/Links.htm).
If your income and assets are very low and you are claiming inability to work due to disability, you may be able to receive Supplemental Security Income (SSI), as well as Medicaid. The SSI application is also part of our SSDI workshops. If you are awarded SSI, you will automatically receive Medicaid. Medicaid will pay for your prescriptions. More information can be found at the Medicaid Consumer Page (www.cms.hhs.gov/medicaid/consumer.asp).
For those on SSDI, you can receive Medicare after you have been entitled to Social Security benefits for two years. In the past, Medicare did not generally pay for prescriptions but “Part D” of the Medicare Modernization Act of 2003 changes this. For more information on the specifics of these changes, contact the State Health Insurance Benefits Advisors (SHIBA) (www.insurance.wa.gov/consumers/SHIBA_HelpLine/dirdefault.asp / 800-397-4422) or go to the Medicare site (below). Other financial assistance available for prescriptions is covered later. More information can be found at Medicare.gov (www.medicare.gov), a consumer beneficiary website that provides access to information about Medicare, Medicare health plans, contact information and publications.
Insurance: Good health insurance is a necessity for anyone with a chronic disease. If you are unemployed, or have an employer who does not offer health insurance coverage, check on group coverage through professional, fraternal, academic, or other affiliations. If you are very low income you may qualify for WA State Basic Health (www.basichealth.hca.wa.gov/ / 800-826-2444 note: long wait list) and Washington State Health Insurance Pool (www.wship.org / 800-877-5187). For legal information, regulatory information, or complaints contact the Insurance Commissioner’s Office at 800-562-6900. For information on individual insurance options and plans call SHIBA (State Health Insurance Benefits Advisors) at 800-397-4422. SHIBA will help walk you through different insurance plans and point out which best correspond to your individual needs.
Check to see if you are eligible for long-term care insurance. A number of people with MS will eventually need in-home caregivers, and some will need long-term care outside the home. For more information, go to the American Association of Long Term Insurance (http://www.aaltci.org/).
COBRA: Since you won’t be eligible for Medicare until two years after your initial SSDI application, you may want to check out your employer’s COBRA rules to span that coverage gap. The Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) requires most employers with group health plans to offer employees the opportunity to continue their group health care coverage temporarily under their employer's plan if their coverage otherwise would cease due to termination, layoff, or other change in employment status. For more information on COBRA go to: www.cobrainsurance.com or the Department of Labor page: http://www.dol.gov/dol/topic/health-plans/cobra.htm.
Prescription Assistance: The manufacturers of the MS disease-modifying drugs (ABCRNs) all have financial assistance. The scope of that assistance will vary with the company and has changed to accommodate the new “Part D”. Check with your manufacturer about those changes. Also, as mentioned earlier, Medicaid covers most prescriptions and Medicare has started “Part D” prescription policy. In addition, Rx Help for Washington (www.rxhelpforwa.org / 877-923-6779) helps low-income, uninsured Washington residents get free or discounted medicines. Other agencies set up to help pay for prescriptions include NeedyMeds.com (www.needymeds.com), The Medication Program (www.themedicationprogram.com / 877-354-6337), Free Meds and Solutions (www.freemedsandsolutions.com).
Financial Planning : Consult a certified financial planner to develop a contingency plan should you become unable to work. A lawyer who is familiar with Medicaid-related issues can help to protect eligibility for state-supported services. The Financial Planning Association will refer you to financial planners in your area, and also has a pro bono program for low-income clients (www.fpanet.org / 800-322-4237). The National Association of Personal Financial Advisors can also refer you to financial planners in your area (www.napfa.org / 888-333-6659).
Estate Planning: This area encompasses such things as life insurance, your will, durable power of attorney, health-care proxy and living will. Life insurance is a consideration if you have a spouse or partner, dependent children, or elderly parents who need financial support. A financial planner, insurance agent, or SHIBA can answer your life insurance questions. On the Internet, you can go to the Consumer Federation of America (www.consumerfed.org) and choose Finance and then Insurance, or the Insurance Information Institute (www.iii.org).
Your will designates to whom you leave your money and property, and also guardianship of any dependent children. If you are low income you may be able to use the services of Legal Aid or, if your will is not complicated, you can use a standard form and fill it out yourself. A living will allows you to specify what medical treatment you want if you are unable to communicate the choices yourself.
A durable power of attorney allows you to designate the person who will handle your finances if you cannot do so yourself. A health-care proxy allows you to designate a person to make health-care decisions for you if you are unable to do so.
For legal clinics in King County call 206-340-2593. The lawyer referral service for low-income clients in King County is 206-623-2551. The Eastside Legal Assistance for low-income clients is 425-747-7274. The NW Justice Project for low income (www.nwjustice.org) is 888-201-1014. Columbia Legal Services (206-464-5911), who represent low-income people on civil legal matters such as SS/SSI, Medicaid and Medicare, guardianships etc., also maintain a list of lawyers who do estate planning and are familiar with Medicaid-related issues. The American Bar Association also has an online lawyer referral & information service by state (www.abanet.org/legalservices/lris/directory.html).
If you have more questions about finances and MS, you can always call the MS Association at 206-633-2606 and speak to one of our social workers. Be your own advocate and find the information you need before that need becomes critical. Don’t let MS catch you without a financial plan.
Was this information helpful? Then please consider making a donation. We are a small, independent nonprofit agency and are dependent on donations from our supporters. Thank you from all the staff at the MSA.
Home Disclaimer Privacy Policy Site Map Articles
The Multiple Sclerosis Association of King County
753 North 35th St., Suite 208, Seattle, WA 98103
Phone: 206-633-2606 Fax: 206-633-2920
Email: info@msakc.org