Why the disability community does NOT want Medicare for All (Part I) --By Julie Reiskin

Submitted by Jose Torres-Vega on October 12, 2017 - 5:14pm


Picture at the Save Medicaid Rally, Denver. ADAPT Members with a clear sign that reads: "Medicaid Equals Life and Liberty for Disabled Americans"

Recently I was in a discussion with someone about health care policy, and there was shocked silence when I shared that CCDC does not support Medicare for All, and that we did not support Amendment 69 during the recent fall elections.  “Aren’t you the people always protesting and carrying on about health care?”   Yes -we are.  “Aren’t you the ones that are most damaged by pre-existing condition exclusions, lifetime caps, etc., problems that a Medicare for All would solve?”  Yes and No.  We are most damaged by regressive policies such as pre-existing condition exclusions and lifetime caps —but NO -Medicare for All will not solve the problem.

Medicare is a great program -for basic health care like going to a doctor, getting a blood test, etc.   We also absolutely want everyone, disabled or not, to have the health care they need.  However, Medicare only works today if you are healthy and have either Medicaid to go with it, lots of money, or can afford an excellent supplement.   Moreover, Medicare has the most regressive policies that trickle down in a horrible way, making most health insurance unusable for people with disabilities.    To top it off, Medicare does not cover what people with significant disabilities need most —which is long-term services and supports.

During our endless national health care debate during 2017, I have wanted to scream at the top of my lungs “I don’t need insurance, I need Medicaid.”  Since screaming at the top of my lungs only serves to irritate my family or my staff (depending on where I am while screaming), I tweeted it a few times.  

Why Medicaid for All instead?

Why Medicaid?  Isn’t that the program for poor people —the horrible program that has no good doctors, where you have to wait forever to get anything done?  Isn’t that a program with endless red tape? 

No program is perfect, and we work closely every day with the Colorado Department of Health Care Policy and Financing or HCPF (pronounced hicpuff) to make it better. However, for our community Medicaid is the best program, and we want it for everyone.  Allowing anyone to buy into Medicaid on a sliding scale rate would make the problems with Medicaid go away.  Medicaid has a better benefit package, less red-tape, greater efficiency and much better policies than Medicare.  At least in Colorado, this is the case.   Medicaid is a federal-state partnership so the federal government sets some of the rules but states have flexibility.  When a change is needed for any reason, including a change in medical technology, a change in known best medical practices, or the realization that a rule is making things worse not better, a change happens at the state level.   With Medicare, a change requires an act of Congress —and we all know smoothly and effectively the U.S. Congress is working these days.   Making a change at a state level usually requires bipartisan support at some level, public input and comment, showing budget neutrality, and going through a process.  Change is not immediate but it is possible.

A few other differences:

1)  Medicare covers 80% of medical benefits.  If you are poor enough to have Medicaid, then Medicaid covers the other 20%.  If you are rich enough to afford a good supplemental, then that pays the other 20%.  Other people are stuck either with an insurance company that will (maybe) pay the 20% but will restrict what doctor and hospital you can use (along with numerous other impossible rules).  Or these other people hope for the best and pay the 20% themselves.   As long as one is healthy and has a reasonable income, this works.  As soon as one is sick, it does not work.  20% of a lot is still a lot.

2)  Medicare is incredibly bureaucratic and complex.  The country is divided in regions, and Medicare contracts out “coverage decisions” for various benefits to insurance companies.  There are “local coverage criteria” that are very hard to find and they may vary by region in some cases.  Medicare rarely pre-authorizes anything.  Patients get services; providers are expected to provide care.  Weeks or months later, Medicare will decide what portion of this they will pay and what portion the patient must pay.  They often deny services because they do not meet some abstract and hidden criteria.   Medicaid applicants and recipients, on the other hand, have a right to appeal ANY adverse action.  Medicaid recipients can even file an appeal if the agency does not act on a request in a reasonable amount of time.  While a Medicaid appeal process may be a bit intimidating, there are people to help and even if you cannot find help, the state office of administrative courts tries to be fair to unrepresented parties.  A Medicare appeal process is completely impossible and not even granted for every form of denial.   Medicaid has timelines for all sorts of decisions —Medicare has no such timelines.

3)  Medicare has antiquated and discriminatory requirements.  The worst one is the homebound rule.   This applies to home health care and durable medical equipment.   This rule basically says that Medicare only covers this service to the extent the beneficiary is homebound.  This means the person rarely leaves their home (except for medical appointments) and it requires great difficulty to leave the home.
This is the rule that drives many people with disabilities who have worked and paid into Medicare, into Medicaid.  With medical technology today, very few people are truly homebound.  Without Medicaid, people with disabilities on Medicare are denied necessary services.   They cannot get a wheelchair that works outdoors, because Medicare only covers the kind of wheelchair needed for use in the home.
People then get indoor chairs, but use them everywhere and get hit by cars, have the chairs break constantly, etc., because the chairs are not made for real use.  Similarly, people with only Medicare are often denied home health care and what they can get is very much in the medical model.   To add insult to injury, Medicare sets the stage for insurance; most private insurance companies follow Medicare rules regarding the homebound requirement.  It is common medical knowledge that people who stay at home all of the time are less healthy than those that have an active life.  Moreover, it is discriminatory and adds to isolation and segregation of people with disabilities.  Because Medicare is a federal program, the American’s with Disabilities Act does not apply.  Fortunately, the Olmstead Decision in which the Supreme Court said that state and local government programs must work to avoid policies that cause isolation and segregation of people with disabilities because they understood that isolation and segregation ARE discrimination.   The ADA requires state and local governments to modify policies, practices and procedures to avoid discrimination – hence, they may NOT impose homebound criteria.

4)  Medicare has no long-term services and supports.  They do not even pay for nursing homes after 100 days (not that we want nursing home care).  There are no services such as personal care, homemaker, supported employment, residential support, transportation, home modification, etc.   These services are essential for people with disabilities to function in the community at the highest level of independence.   Medicaid is the ONLY “insurance” that provides these essential services.   While each state is different, all states offer some long-term services and supports.   We would support a national requirement for a basic level of LTSS.   Most states allow for at least some “participant direction” of services. In Colorado, this means that some clients are allowed to control who comes into our homes, touches our bodies, and has access to every detail of our lives.  We are given a budget and must live within it.  Within the budget, we can decide what our aides are paid, when they should come and what they should do.  This is much preferred than having an agency make these decisions and try to get numerous people services usually desired at the same time.  Medicare has no such flexibility (of course they do not have any personal care benefits either).

Additional differences between Medicaid and Medicare and why CCDC advocates for Medicaid for All as the discussion of health care reforms ensues in America in the months to come will be covered in Part II of this blog next week.

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