Why the disability community does NOT want Medicare for All (Part II)

Why the disability community does NOT want Medicare for All (Part II)
By Julie Reiskin
October 23, 2017

To remind readers, Part I of this blog post from early October began with my statement that I was recently in a discussion with someone about health care policy. when I shared that CCDC does not support Medicare for All, and that we did not support Amendment 69 during the recent fall elections, there was shocked silence. “Aren’t you the people always protesting and carrying on about health care?” Yes-we are.

What follows are several more reasons not mentioned in Part I of this essay that compel CCDC to advocate for “Medicaid for All” as the way to go in health care reform ahead:

Medicaid has multiple requirements for public involvement.
There is a federally mandated advisory council that requires client involvement. In Colorado, just about every program has a robust public committee that complements other ways for the public to be actively involved. If one was so inclined, one could go to meetings about Medicaid policy with the state every day of the week. Nothing happens in Medicaid without an opportunity for public involvement. This may sound tedious unless your life is altered by how rules are made or enforced. This level of involvement is impossible on a national level.

As we all know, having lobbyists in DC opining on issues does not translate into understanding of how a policy affects the people. We are slowly learning about some of the very negative effects of the recently passed 21st Century Cures Act which imposes national mandates on states to impose on Medicaid clients and providers. The motivation may have been good, but the outcomes are bad. Working things out on a state level in terms of day to day management of programs works much better than trying to write rules or policies on a federal level for every single issue. Medicaid currently has national standards; those are clearly met. The details are often left to the states. If the states follow the rules, the states are not hassled. If they fail to follow the rules, they have to answer for that. Medicare, on the other hand, has no such accountability. There is no workable process to solve a problem with Medicare in terms of how it works on a day to day issue.

There are other differences.
Medicare in some areas does pay better than Medicaid, but if there were more money in Medicaid, rates could be raised. Over the past ten years, states have worked hard to get Medicaid rates at least close to the Medicare rate. Most providers accept Medicare, not all take Medicaid—again, if the population on Medicaid increased and rates were increased a bit, that would change. Some providers that do not take Medicaid have outdated information. Many years ago, it was true that Medicaid would take forever to pay for services rendered. That has not been the case for more than a decade. Medicaid is now one the fastest payers.

Finally, and this is very important, Medicaid cannot just take away benefits.
To take away a benefit from everyone, there would have to be a legislative bill which would give people a way to be part of the process, and hopefully a solution. To take away a benefit from an individual requires a notice, and the right of the beneficiary to have a hearing before a neutral judge. Whoever wants to take the benefit away has to prove that something changed. One of our big concerns with Amendment 69 was that a board could vote away our benefits if funds were tight. The board did not have any requirement to have input from the disability community – despite how deeply many of our lives depend on these services.

The Nevada legislature passed a bill that would allow Medicaid for all people in Nevada; those not poor would pay a premium. Sadly, this was vetoed by the Governor of Nevada. In Colorado, adults with disabilities have this option—we can buy into Medicaid but only if we have a job and are under 65. If we lose our job and do not get another one in ten days, our Medicaid disappears. Even though no one retires at age 65 anymore—this program stops at 65. Other than those two gaping problems, the Medicaid Buy-In Program works well. For many people with disabilities buying insurance is useless because we need what Medicaid offers, not what insurance offers. While we may use doctors, need labs, and need hospitals, we really need LTSS and medical equipment. Non-disabled people would not need LTSS but they could buy into the regular Medicaid package.

While this is not a national program, and a state-by-state approach carries some dangers of people with greatest needs moving to states with the best benefits, it is a much more appropriate solution than Medicare for all. Medicare for all sounds good because Medicare does not have the stigma of Medicaid. However, many advocates of Medicare for All are using this term out of a place of ignorance based on privilege. Medicare for all will NOT solve our nations’ health care problems. With a proper federally mandated floor regarding covered benefits, Medicaid for all is the best of all worlds. Guarantee of health care with state control and allowing states to make reasonable rules and provide the benefits that best work for their populations. People with disabilities have always been the canaries in the mine of health care. The people promoting Medicare for All really need to listen to us—or at least, roll a mile on our wheels.

Why the disability community does NOT want Medicare forAll (Part I)

Why the disability community does NOT want Medicare forAll (Part I)

By Julie Reiskin

October 11, 2017

Recently I was in a discussion with someone about health care policy, and there was shocked silence when I shared that CCDCdoes 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 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:

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.

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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CCDC Comments on Human Services Rule about Aid to Needy Disabled

This testimony was sent to beth.kline@state.co.us in support of a rule change that will be heard by the Board on August 3rd in Durango.  For information about the board meeting see https://www.colorado.gov/pacific/cdhs-boards-committees-collaboration/state-board-human-services

To Human Services Board:

From:  Julie Reiskin, Executive Director, CCDC

RE:  Support for Aid to Needy Disabled Rule Package

Dear Members of the Human Services Board:

I am writing as the director of the largest statewide, disability-run, disability rights organization in Colorado in full support of the AND rule package…and to encourage you to continue with reforms to better support clients that need this program.   Our friends from the Southwest Independent Living Center, the Colorado Center for Law and Policy and the Colorado Coalition for the Homeless will also be testifying and this letter is a supplement to their direct testimony.

Aid to the Needy Disabled (AND) is the program for the poorest of the poor, the most severely disabled with the fewest resources.   People on AND are living so far below the poverty level they are not even on the radar. AND was meant to be a bridge between the time one becomes disabled and the time one can get on some sort of permanent disability benefits.   It is also meant for those with disabilities that last between 6 and 12 months—making the person unable to work for a long time but not eligible for Social Security. Sadly, for some who are unable to navigate the complicated Social Security process, AND ends up as their only means of support for too long.    The disability community, provider organizations, and some state agencies have tried to create programs to help this group of citizens whose disabilities are of a nature that make complying with rules, deadlines and procedures as impossible for them as walking up a flight of stairs is for someone whose legs are paralyzed.   Despite our best efforts, we have not been able to fund a support program that serves all in need.

Even when it is a temporary solution, the system still needs to work with an understanding that one is always in a desperate situation to even apply for AND.  To be considered one must have NO income, no savings, and no support. It is such as a small amount of money that if people have other options they will take those other options.  When someone is waiting for SSI or SSDI and they accept AND the funds have to be paid back when the client receives his or her backpayment. Given that these individuals are already saddled with debt, both formal and informal, people do not sign up for this program when there are other options.   Moreover, applying for ANY disability benefit is a humiliating and demoralizing experience, even when everyone involved is kind (which sadly is not always the case). One must tell strangers about extremely personal details, over and over again. One must confront the fact that one cannot do easy tasks that are considered natural for all adults in our society.  One has to admit that one cannot support oneself or loved ones (if there are any left). Applying for benefits is one more loss, often part of a cascade of defeat. It is imperative that the Board understand the backdrop against which our fellow citizens are applying. Sensitivity training should include trauma informed care as well as an understanding about grief and loss and the disability process.    While disability is NOT a tragedy, the systems that we encounter early in our disability journey do create trauma and find people at their lowest point, when they are still believing that disability is a tragedy.

CCDC strongly supports the following proposed changes for the following reasons:

1.       Extend the time an AND applicant has to return a completed Med-9 from 10 days to 30 days:  This is important because ten days is not adequate to find a doctor and get the form filled out.  Often the application for AND is done with the application for Medicaid. If one does not have an existing relationship with a doctor, one cannot just find one quickly.   Even if one does have a relationship, not all doctors will do these so sometimes people have to find a different provider to do this form. Along these lines, we supported the law to allow psychologists to fill the form out and support CDHS making rules to allow other licensed professionals such as Social Workers to complete forms, particularly when the disability is mental health.  It is in professional purview of any LCSW to diagnose and assess the severity of any mental disability. Ten days is not adequate and the short time limit created many re-applications which takes time from everyone.
2. 
        Extend the time an AND applicant has to verify that they’ve applied for SSI/SSDI from 10 days to 60 days on the initial application and 30 days on subsequent applications:   The SSI process is incredibly complicated and doing a rushed application will result in a denial no matter how eligible the client is—because something will be missed. It is best if the client has an advocate to assist with the process and it is unlikely that any advocate could do an application with a client in ten days.   An advocate needs to meet the client, get releases signed, review the medical records, draft materials, and often do research. Once there is a denial an appeal is necessary and while the client can get AND benefits for the duration of the appeal, this adds to the already problematic backlog of disability determination cases in the Social Security appeals system.  Waiting up to two years for a hearing is now common. This is part of how the AND program has moved from a temporary stopgap to a way of life. During the long wait, clients often lose their place to live, and then miss notices and then lose their appeal for failure to follow up. They then have to start the process again.
3.      Provide provisional AND benefits to applicants that have met all eligibility requirements (except the SSI verification) while they work on their SSI/SSDI application:  If the client has no benefits while they work on the application the chances of this ever getting done are decreased dramatically. Benefits help pay for things like bus passes to go see their advocate, copayments for medications and treatment (SSA will deny if an applicant is not receiving treatment) as well as basic such as personal hygiene items.  
4.      Eliminate the social factors matrix assessment:    This matrix has been a burden on worker and client alike and is neither necessary nor appropriate.   We support the elimination of this matrix. As noted above, people applying for AND are already suffering from significant lack of resources and lack of social support.   Another complicated process to make the clients go over and over this, using scarce county worker time does not benefit anyone.

People have been working on this for a long time, and there has been a lot of engagement in this process.  Please pass these rules and continue to work on ways to make the AND benefit easier for those in such desperate need to receive.  As a state we are compassionate people and need not make it harder for people at what is often the lowest point of one’s life.

I am willing to answer any questions but my colleagues who will be at the meeting will be in the best position to answer direct questions at the meeting.

Sincerely

Julie Reiskin, LCSW

Executive Director

CCDC

Nominations for Memorial Awards Now Open

Dear CCDC Members:

It is time once again for you to submit nominations for our memorial awards. You may use this link .  You can only nominate one person per survey, but you can fill out the survey as many times as you want. We have many people for whom awards are named, we do not offer every category every year. We have selected 12 award categories and will give 6 awards on September 17th at 5:00 p.m. at the Lowry Conference Center at 1061 Akron Way.

These awards will be announced on September 01. Anyone is welcome to attend the awards ceremony. We will be putting out an Evite in early September.

These memorial awards generally recognize people currently active in the disability community and are in the memory of those from our community who are no longer with us. Please nominate people, and share the link widely. Nominations will be open until AUGUST 16TH at 8:00 PM. Please nominate deserving community members for these awards and share far and wide.

https://www.surveymonkey.com/r/Memorial18 

Thanks Julie

P.S. This is different than our October 3rd Commnunity Awards Event. The October event is our annual fundraiser and acknowledges people in the broader community. If you want information on that celebration please contact Laura Gabbay, our director of Development and Evaluation, at lgabbay@ccdconline.org. There is no reason why you cannot attend both celebrations of the great people and great work being done throughout our community.

HAPPY ADA DAY to all of you!

Happy Independence Day !!

ADA Day

Written by Lucinda Rowe
July 26, 2018

ADA Day is significant to my family but most of all to my daughter. Estrella was born prematurely weighing one pound. She was diagnosed with severe Cerebral Palsy at a month old. Continue reading “HAPPY ADA DAY to all of you!”

Service Animal Training by Disability Law Colorado

Service Animal Training

Requirements for Service & Assistance Animals

Join Disability Law Colorado at one of our upcoming training to learn about the law regarding service & assistance animals!

• Do you know the difference between a service animal and an assistance animal?
• Do you know which of these animals is allowed in a public business?  In housing?  In a school?
• Do you know when an animal – even a legitimate service animal – can be removed from a public business?
• Do you know what information can be requested of a person with a disability entering a public business with an animal? In housing?
• Do you know about Colorado’s new law regarding intentional misrepresentation of a service or assistance animal and how it will apply when it is effective on January 1, 2018?

If discussion around any of the above questions interests you, we encourage you to attend one of our upcoming training.

Denver Training: July 24, 2018, 2:15 – 4:15 pm
Mile High United Way, 711 Park Ave West, Denver, CO 80205
Click here to register.

Fort Collins Training, July 27, 2018, 1:00 to 3:00 pm
Harmony Library, 4616 South Shields, Fort Collins, CO 80526
Click here to register.

Colorado Springs Training, August 1, 2018, 10:00 am to 12:00 pm
Tim Gill Center for Public Media, 315 East Costilla Street, Colorado Springs, CO 80903
Click here to register.

Vail Training, August 14, 2018, 1:00 – 3:00 pm
Vail Public Library Community Room, 292 W Meadow Drive, Vail, CO 81657
Click here to register.

Additional locations and dates may be announced in the future.

If you need any accommodations (ASL interpreter, Spanish interpreter, etc.) or have any questions about these upcoming training, please contact Emily Harvey at eharvey@disabilitylawco.org or 303.722.0300.  Please let us know of any accommodations you need at least 3 days prior to the training for which you have registered.

Click Here to View Printable Flyer for These Training Events

Your Vote! Matters

CCDC Advocates will be registering people to vote at the downtown Denver Public Library (10 W 14th Ave. Parkway)  on Wednesday, July 18, 2018 from 10:00 am-noon.

I Pledge to Vote

We want all people with disabilities to realize their vote matters and voting is one way to make sure essential benefits which enable community living are available.

Did you know?

Colorado law requires that all voters with disabilities have the right to cast their vote privately and without assistance…

…even individuals with a guardian.

• All Colorado voters now receive mail ballots. This means that inaccessible polling places are no longer an issue. However, if you prefer to cast your ballot in person, rather than vote by mail, you still have the right to do so.
• There are no restrictions on the right to vote under Colorado law related to disabilities. 
• Colorado statute specifies that individuals confined in a mental illness institution “shall not lose the right to vote because of the confinement.”
• An individual in jail serving a misdemeanor sentence has the right to register to vote and vote in any election.
• Pretrial detainees are eligible to vote.
• You are eligible to vote if you are on bond as long as you are not convicted of a felony.
• People on probation may register to vote and cast their vote in any election.
• In Colorado, you have the right to vote after you have served your sentence, including parole.

Learn more about your voting rights by going to Colorado Secretary of State voter information.

So are you ready to make your pledge to vote?  Your vote matters more now than ever. You are not powerless.

You CAN make a difference!

Take the Pledge!

I Pledge to Vote

GET INVOLVED: CCDC Advocates will be registering people to vote at the downtown Denver Public Library (10 W 14th Ave. Parkway)  on Wednesday, July 18, 2018, from 10:00 am to noon. Click Here to Register to Vote

INDEPENDENCE DAY!

I could not agree more with every one of the sentiments and laments described in so many of the posts and on social media pertaining to the subject of Independence Day I have read from yesterday based on all of our collective current experiences  These same experiences have led to the following: I have literally cried. I have literally laughed out loud (not easy for a quadriplegic). I have believed that the unbelievable wasn’t happening when it has and continues to do so.

Nevertheless, strangely, though, I want all of us People with Disabilities, [1] to know I woke up yesterday morning and this morning with a different thought in my head:

People with Disabilities struggle. We fight. People with Disabilities need the law changed. We change the law. People with Disabilities want to work. We get jobs. People with Disabilities want access to transportation. We access transportation. People with Disabilities want access to housing. We fight like hell to get housing. People with Disabilities don’t like who is in office. We teach politicians, work on campaigns, run for office, and most importantly, we vote. People with Disabilities’ independence is interfered with. We force you to give us the independence you have. Even we, People with Disabilities, have taken to whining. People with Disabilities, stop it!

Here is the question I pose: Are People with Disabilities in the United States of America more independent than we were 28 years ago? The answer to this question is an obvious and resounding, “YES!” Even so, it has been a very rocky ride. It remains a rocky ride. We have an enormous amount of work to do. People with Disabilities, let’s continue to do the work.  Nevertheless, it has paid off. So, keep doing it! (Compare the timeline to the struggle for civil rights of African Americans and people who are black for perspective; what do we have in common? We fight!)

When I broke my neck 32 years ago in the great state of South Carolina, I thought (as almost everyone did then and, still, the majority of people think now), it was over for me. Despite attitudes and barriers, I lived. Despite attitudes and barriers, I went to college. Despite attitudes and barriers, I got a law degree. Despite attitudes and barriers, I humbly submit CCDC and with the help of its Legal Program and all of the current and past cases  (and all of our many friends who have helped, both in the legal community, the Civil Rights Education and Enforcement Center, Disability Law Colorado, Killmer, Lane & Newman, LLP, Advocacy Denver — to name just a few — and otherwise outside the legal community) have said, “Screw your attitude and your barriers and the Telethon you rode in.” [2] We will be independent. I did not know what a “disability rights” advocate was. And yet I was one. I did not know what the “disability community” was. And yet I became a part of it without even trying. I am and will remain independent! My life will not be restricted to the making the tile trivet the occupational therapist at Roger C. Peace Rehabilitation Hospital said was a good use of my time and helpful for my future endeavors.

Yesterday was not the day to spend time wallowing in lost challenges. Today and tomorrow are not the days to spend time being complacent. Today and tomorrow are not the days to say, “Enough is enough; we can’t do this anymore.” We have. We can. We will.

Independence Day is the time to relish the victories. They are many. Hopefully, you put some relish on your hot dog while you were thinking about it. I also think about all of those People with Disabilities who came before me and fought for their independence and mine. I thank you more than you’ll ever know.

CCDC will keep fighting for the independence of People with Disabilities. And so will you. You know it!

In Congress, July 4, 1776 [as amended by this author on July 4 and 5, 2018].

The unanimous Declaration of [People with Disabilities and] the [fifty] united States of America [and all of its unincorporated territories and other possessed lands], When in the Course of human events, it becomes necessary for one people to dissolve the political bands [and efforts of all others who have created the need for us to fight for our independence] which have connected them with [those in government and all others who oppose our reality and very existence], a decent respect to the opinions of [hu]mankind requires that they should declare the causes which impel them to [continue fighting like hell for their independence, they will do so].

Declaration of Independence, United States of America.

As People with Disabilities:

• We declare we will receive all healthcare and attendant care we need.
• We declare we will work with the supports we might need to do so.
• We declare we will receive quality education.
• We declare we will access and use public transportation equally.
• We declare we will join you in all places of public accommodation on an equal level.
• We declare we will enjoy all of the same public facilities on an equal level with all other people.
• We declare we will be provided reasonable accommodations and reasonable modifications to policies, practices and procedures as needed to ensure our equality.
• We declare we will have communication that is as effective as communication provided to non-disabled people.
• We declare we will live in our own homes.
• We declare we will decide who our attendants are and how they meet our needs.
• We declare no decision will ever be made about us without our input and involvement.
• We declare we will represent ourselves and our inalienable rights will be represented in government.
• We declare you will accept that we are people, entitled to the same inalienable rights of life, liberty and the pursuit of happiness just as you.
• We declare we are and will be independent.

People with Disabilities: keep getting off of your asses (so to speak) and do what all People do. If you are prohibited from doing so, make it happen.  As our history demonstrates, we will not sit idly by. We will take action.

Don’t mess with us, because we are going to keep doing it. You have not, and you will not stop us. Stop trying. You won’t win. We are independent. We will stay that way. Fighting for our independence became necessary a long time ago. We have been and are impelled to do so. We will.

Kevin W. Williams, Legal Program Director. Colorado Cross-Disability Coalition,  July 5, 2018

[1] Please note that when CCDC talks about “People with “Disabilities,” we are talking about friends, family members, and all of our partners in very many ways who have experienced the same indignities and have rejected the same in the name of independence.

[2] We have also said, “Piss on your Pity!” Frankly. equality means People with Disabilities don’t want anything “trickling down” on us.