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The Medicare Maze: The Reeve Foundation's easy guide for people living with paralysis

By Kate Matelan

The Medicare Maze

Navigating the Medicare enrollment period can be a daunting task between the fine print, numerous options, and limitless questions all coupled with the new health reform laws. However, making an important and significant choice such as this takes extended time and research, particularly for those living with paralysis.

Read on to understand what coverage you may need (and how to get it) and why this year's beneficiaries should be aware of new changes in their health care.

What is Medicare?
What exactly do Parts A, B, C, D mean?
Should I sign up for Medigap?
When and how do I enroll?
How does health care reform affect Medicare?
What should those living with paralysis know?
What are the main resources I can consult?

What is Medicare?
Medicare is a United States government provided health insurance program that is funded for the most part by payroll taxes and is available to those:

- 65 years and older,
- younger than 65 years with a disability (and have received Social Security Disability Insurance (SSDI) for at least 24 months),
- of all ages who have end-stage renal disease (permanent kidney failure in need of dialysis or a transplant).

There are different choices in obtaining the services covered by Medicare. It's important to note here that your coverage is very dependent on where you live .Not just the state, but where in the state, based on your zip code.

One choice is Original Medicare (what Parts A and B are sometimes referred to -- more on that below) which allows you to select a prescription drug plan (know as Part D) based on your medications.

You can opt for a Medicare Advantage Plan, run by private insurance companies approved by Medicare that covers all of Parts A, B, and D in one bundle.

Compare all of your options.

What exactly do Parts A, B, C and D mean?
Part A: Hospital Insurance

- Inpatient hospital care
- Inpatient care at a skilled nursing facility (not long-term)
- Inpatient care in a religious non-medical health care institution
- Hospice care
- Home health care

- Typically premium-free, as long as you or your spouse paid Medicare taxes while working
- If not, you may be able to buy Part A if you are:
- 65+, you're entitled to (or enrolling in) Part B, and you meet citizenship or residency requirements.
- Under age 65, disabled, and your premium-free Part A coverage stopped because you went back to work.
- Your state may be able to help you pay for Part A and/or Part B if you have limited income or resources.

- Be sure to understand any caps and limits on home health services.
- Know that a doctor or other health care provider must order your care. Only Medicare-certified home health agency providers can be used.
- Read the clauses! There are a lot of stipulations that can make a difference in how Part A works with your type and frequency of care and services.
- For example, Part A covers inpatient stays, but only if they are in semi-private rooms (unless medically necessary) and don't include an extra charge for a television or telephone.- Always keep in mind that staying overnight in a hospital doesn't necessarily mean you are an inpatient -- always ask if you're an inpatient or an outpatient. On the day a doctor formally admits you to a hospital, you will be considered an inpatient.

Medical InsurancePart B: Medical Insurance
- Doctor's services
- Outpatient care
- Home health services
- Other medical services (including medically necessary supplies)
- Some preventive services (health care to prevent illness or detect at an early stage)

- Typically a standard premium amount each month
- May be a higher cost (a 10% increase to your premium for every year you could have, but didn't enroll) if you don't sign up for Part B when you are first eligible
- No penalty if you delay and are covered by health insurance through their own and spouse's current job (with 20+ employees)
- Depend upon whether you have Original Medicare or have a Medicare health plan

How to obtain:
- If you receive benefits from Social Security or the Railroad Retirement Board (RRB), you will automatically get Part B the month of your 65th birthday.
- If you are under 65 and disabled, you will automatically receive Part B after you get disability benefits from Social Security or certain disability benefits from the RRB for 24 months.

- For some services there are no costs, but there may be payment needed for the doctor's visit.
- Some plans have a Part B deductible. If this applies to your plan, you will be required to pay all costs until you hit the deductible before Medicare will pay its portion. When you reach this deductible, you'll generally pay 20% of the Medicare-approved amount of the service.
There is a listing of preventive services under Part B and how often and how much of a percentage you may have to pay. Be sure to consult these regulations and check out if you can pay nothing once 2011 hits since some services will be available at no cost.

Part C: Medicare Advantage
This is a Medicare health plan choice that is offered by private insurance companies approved by Medicare. It is an alternative to Original Medicare that may offer you extra services and save you money depending on your situation. BUT, be very careful because the plans all have their own rules and regulations, which can change from year-to-year, which may affect your costs.

- Health Maintenance Organization (HMO) Plans
- Preferred Provider Organization (PPO) Plans
- Private Fee-for-Service (PFFS) Plans
- Special Needs Plans (SNP)

- All of your Part A and B coverage
- Most include prescription drug coverage (Part D)
- Emergency and urgent care
- All services covered by Original Medicare, except for hospice care
- Some may offer additional coverage (ex: vision, hearing, dental, etc.)

- Monthly premium for the services included in addition to Part B premium
- Each Advantage Plan can charge different out-of-pocket costs and regulations
- Be sure to check with the plan in regards to: referrals, covered services, and covered physicians, facilities, and suppliers. Going outside of this coverage could lead to increased costs.

- Keep in mind of what goes into out-of-pocket costs in Medicare Advantage Plans. They depend on:
- Whether the plan charges a monthly premium or pays any of your monthly Part B premium
- Whether the plan has a yearly deductible or any other deductibles
- Co-payments and co-insurance payments (what you pay for each visit or service)
- What types of services you need and how often they are needed
- If you use your plan's network providers and follow all your plan's other rules
- If extra benefits you may need are additional costs
- What the plan's yearly limit is on your out-of-pocket costs
- The little details really do matter! Always check with your plan to understand all rules and regulations since following protocol can be the main source of keeping your costs down. For example, you may need to get a referral to see a specialist.


Part D: Prescription Drug Coverage
- Medicare Prescription Drug Plans (PDPs): add drug coverage to Original Medicare, some Medicare Cost Plans, some Medicare Private Fee-for-Service (PFFS) Plans, and Medicare Medical Savings Account (MSA) Plans.
- Medicare Advantage Plans (like an HMO or PPO): will get all of your Part A and B coverage and prescription drug coverage (Part D) through these plans. Sometimes Medicare Advantage Plans with Part D coverage are called MAPDs.

- Those individuals who have either Medicare Part A or B can join a Medicare Prescription Drug Plan.
- Those individuals who have both Part A and B can join a Medicare Advantage Plan.
- You must live in the service area of the plan you wish to join.

- Differs from each plan and the specific prescriptions covered
- Typically a higher cost (a late enrollment penalty) if you don't sign up for Part D when you are first eligible and don't have other credible prescription drug coverage

- Be aware of the doughnut hole! This should be one reason, if not the main reason, you carefully choose your particular Part D plan. The doughnut hole, oftentimes known as the Part D coverage gap, refers to the point in which a person's Medicare prescription coverage has hit a certain level (where the benefit has run out) and the person must cover all drug costs him or herself for the rest of the year. In other words, in 2010, your deductible and co-pays have reached $2,830 and you must pay for all Part D expenses until you reach the $6,400 mark when catastrophic coverage sets it and Medicare begins covering costs again.
- To avoid this stage, make an informed decision about the plan that can cover your habitual prescriptions at the lowest cost.
- See Trudy's story below to understand how the doughnut hole can truly affect your well being and financial stability.
- With premiums rising and plans consistently changing, always compare generic vs. brand name drug prices in your plan -- you may be surprised with the money you can save either way.

Doughnut Hole Dilemma: A Personal Perspective
Trudy, 60, developed a spinal cord injury due to a neck fracture she didn't know she had. It healed on its own, causing spinal stenosis as she got older, which resulted permanent damage. After a two-year wait for Social Security Disability Insurance (SSDI), she was finally approved in late 2008. Due to this wait, she was approved for Medicare immediately and began the time-intensive task of choosing the right plan for her.

With her background in business and purchasing health insurance for company employees, Trudy had some insight in navigating the Medicare process. However, she spent a solid week or more going over policies and making phone calls to find the best coverage for her needs. After signing up for a Medicare Advantage plan, she ran into some other health issues in 2009 that required surgery, hospitalization, medical equipment, and other services. Thankfully her choice in plans paid off and she had very little out-of-pocket at the time.

But in April 2010, Trudy found herself in the doughnut hole. She claims, "I hit the doughnut hole because I didn't realize you have to do your homework on how much is being paid out in total for your prescriptions." The costs for the medications she had been given and was taking quickly took her to the coverage gap limit. She even found out that one of her medications, costing hundreds of dollars a month, could be substituted with a generic for a monthly price tag of only nine dollars. Learning her lesson, she now explains, "I always ask the doctors, no tell them, I have to have generics. You can't afford to take any chances if cost is going to be a problem."

Her plan also changed some of its rules and regulations that have added additional co-payments and other costs to her care. With the financial burden of her medications and other treatment, she has stopped taking some of her prescriptions and resorted to canceling or postponing doctor visits that are crucial to her health. In sacrificing her medications and care for financial reasons, Trudy vents her frustrations in asking, "How many people out there are unable for one reason or another to deal with all of this?"

Should I sign up for Medigap?
Medigap is supplemental coverage that can fill the gaps in Original Medicare coverage. You buy this coverage policy through a private company (or through your employer/union) and costs can vary.

If you choose a Medicare Advantage Plan, you don't need a Medigap policy.

Back to top.

When and how do I enroll?
Compare and contrast all options for your coverage. You'll be able to input all of your information to find a plan that suits your needs in your area.

Part A, B, C, and D initial enrollment coverage can be obtained over a 7-month period, beginning 3 months before your 65th birthday.

- You will automatically be enrolled in A and B if you are already receiving Social Security at age 65. If not receiving these benefits, sign up at your Social Security office or call 1-800-772-1213 (TTY, call 1-800-325-0778) for Part A and B coverage.
- Reminder: Part B enrollment is your choice and can be refused.
- Part C and D enrollment must be done through a private insurance company.
- For Medicare Advantage Plans, contact the specific plan provider directly to obtain all the information needed. Applications may be done via paper, phone, or online.

Medicare's open enrollment period is available from Nov. 15-Dec. 31, 2010. Starting in 2011, this period will change to Oct. 15-Dec. 7.

You can review your health and prescription needs annually and switch to a different plan during this time. This is the only time of year you can change your plan and add or drop Part D coverage. Part A and B will renew automatically. Some other timing exceptions do exist.

A clear-cut resource timeline can be seen here.

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How does health care reform affect Medicare?
Affordable Care Act
- Extends Medicare by incorporating cost-saving measures until at least 2029
- Reduces payment errors and waste as well as Medicare fraud
- Affects phases of the Part D coverage gap/doughnut hole
- 2011: Those in the doughnut hole will receive a 50% discount on brand-name drugs.
- 2020: In a phase out approach, complete coverage of prescription drugs in the doughnut hole.
- 2014-2019: The catastrophic coverage threshold is reduced to help those with high drug costs.
- Offers additional protections for Medicare Advantage Plan enrollees
- 2014: Protections such as limits to the amount these plans can spend on administrative costs and insurance company profits will be implemented.

Other changes
- Improves prevention benefits coverage - Medicare will cover a free annual wellness visit and prevention plan
- Creates an Independent Payment Advisory Board
- This 15-member board recommends ways to reduce Medicare spending if its per capita growth exceeds certain rates.

What the research shows
The Kaiser Family Foundation reported in September 2010 the results from a survey in 2008 that uncovered nonelderly disabled persons under Medicare reported more difficulties in affording medications than their older counterparts. With the Patient Protection and Affordable Care Act (ACA), this may make care more available and more affordable for the nonelderly disabled on Medicare and those waiting to become eligible. The ACA works to improve and expand access to both public and private coverage and advance Medicare altogether.

Nonelderly disabled individuals face increased financial burdens to cover their care, medications, and live as independently as possible. In the survey, it found that out of the 21% of Medicare beneficiaries who delayed getting or did not get health care services because of cost concerns in the last 12 months, almost half where disabled and under age 65. Additionally, this group is also dealing with the waiting period to be approved for Medicare (those with SSDI for 29 months are then eligible for Medicare) and many are uninsured during this time since private insurance companies oftentimes deny coverage for preexisting conditions.

The ACA has limited the amount out-of-pocket spending for prescriptions when reaching the coverage gap, also known as the doughnut hole. It will also provide help to those in the waiting period by offering uninsured persons with preexisting conditions subsidized coverage through state or national-run policies. Once 2014 hits, there will be a coverage mandate requiring all citizens to have insurance, with resources and other means available to break down barriers.

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What should those living with paralysis know?
With all of the choices at your fingertips, the decision in picking the right Medicare plan relies on you asking the right questions and truly making sure the care, medications, and coverage you need is included in your plan. As a person with SCI, these answers are VITAL to making the right choice and remaining financially and medically secure. Remember, the final decision you make is the plan you will be locked into for an entire year.

On top of all the information and guidance on all parts of Medicare, take in account the answers to some of the following questions below when deciding:
- What can I afford to pay for my care, medications, and overall coverage?
- What would be my out-of-pocket ER costs?
- Are you locked into your network or can you go outside if certain specialists are not in a certain mile radius? Does that network include your physicians, any specialty care facilities, and specialists?
- Are my medications covered? Is there a difference in the brand vs. generic in terms of price?
- What is my prescription coverage gap/doughnut hole dollar number?
- Can you use supplemental coverage (Medicare Savings Programs, state-run pharmacy assistance programs, etc.)? Click here for medical and drug costs savings programs.
- Are my medical supplies covered and is there a cap on the expense?
- Is durable medical equipment (ex: wheelchair) covered? How often can I purchase this equipment? Is there a cap on the expenses of durable medical equipment?
- How much are my premiums?
- What are my co-payments on doctor's visits, medications, supplies, etc.? What deductibles exist?

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What resources I can consult?
- Medicare.gov
- Find a Medicare plan
- Medicare cost savings options
- Healthcare reform – What to know in 2011
- BenefitsCheckup.org
- More information on Part D
- Medicare interactive.org
- Kaiser Family Foundation
- Enrollment timeline for Parts A, B, C, D
- If I have Medicare do I need to do anything under ACA
- Medicare Open Enrollment Tips for Consumers Medicare open enrollment tips for consumers
- 5 tips to protect yourself during open enrollment
- Medicare Open Enrollment Calendar (Word doc)
- BenefitsCheckUp.org

Paralysis Resource Center
- Fact sheets on Medicare, Medicare Part D, Medicaid and insurance
- Rights and Benefits: Insurance and Medicare

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A Reeve Foundation Fact Sheet on Medicare Part D (PDF)

A Reeve Foundation Fact Sheet on Medicare, Medicaid and Insurance (PDF)

The Center for Medicare Advocacy, Inc.The Center for Medicare Advocacy, Inc. provides education, advocacy, and legal assistance to help elders and people with disabilities obtain necessary healthcare.

Features information on the State Children's Health Insurance Program (SCHIP), known as Title XXI, which offers health insurance coverage for eligible kids. Also provides information and resources specific to Medicaid and Medicare along with helpful tools to navigate the system.

Insure Kids Now!Insure Kids Now! is a national campaign to link the nation's 10 million uninsured children -- those from birth to age 18 -- to free and low-cost health insurance.

Kaiser Family FoundationFactsheets for consumers on Medicare. Covers prescription drug law, Medicare Advantage program, Medicare and women, etc.

MedicareThis is the official government site for people with Medicare.

MedicaidMedicaid is a federally supported healthcare program administered on the state level.

The Medicare Rights CenterThe Medicare Rights Center (MRC) is a not-for-profit organization working to ensure that older adults and people with disabilities get affordable health care.

Tri-State AdvocacyPrivately funded non-profit for spinal cord and burn injured survivors and amputees. Helps families on specific provisions of their health insurance policy. Services are free.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.