The Sound Off! blog is a place for CCDC members to share their experience of living with a disability from the perspective of a disability rights activist. Express opinions on disability issues or other issues that relate to disability. Share their feelings about the issues of the day.
Why We Want MEDICAID for all Not MEDICARE for all –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 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 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.
New Technology and Sidewalk Safety
Denver Public Works recently launched a one-year pilot permit program for dockless scooter and bike companies. CCDC enthusiastically supports new mobility options that provide safe, healthy, and convenient alternatives to driving. We also believe sidewalks are sacred spaces that should be preserved for people moving 5 mph or slower and remain free from obstructions that impede the movement of people with disabilities. We are advocating for Denver to change its policies to accommodate scooters where they belong – in bike lanes and other places where bicycles are allowed.
To help inform this policy change, if you experience a problem with scooters or other mobility devices on the sidewalk, please report it to the City. Examples include: device left in pathway; struck by device; or having to make a defensive move to avoid being hit. Report an incident to email@example.com.
HAPPY ADA DAY to all of you!
28 years ago today the ADA was signed into law….and we have seen changes that only dreamed at one point. When the ADA was passed into law Estrella Rowe, the daughter of Lucinda Rowe, was not even born. Please enjoy this guest blog written in honor of the anniversary by the parent of someone who continues to benefit from this incredible law that we must still protect.
CCDC is happy that a new generation of leaders, like Lucinda Rowe, are involved. Lucinda took our advocacy class, got involved as a volunteer and is now a temporary employee. Thank you, Lucinda, for writing this guest blog! We welcome others to submit pieces for this Sound Off Blog.
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,  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.”  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
 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.
 We have also said, “Piss on your Pity!” Frankly. equality means People with Disabilities don’t want anything “trickling down” on us.
Statement on Immigration Actions
As a social justice organization, CCDC agrees with the statements made by our partner CCLP. CCDC is very concerned about all of the children and parents separated. When CCDC supported HB 18-1104 this year to help keep families with disabilities together, we did so out a belief that all families should be given support to stay together because that is the moral thing to do. We are particularly concerned about reports of children with disabilities that might need supports, medical care, or additional attention which they are unlikely to receive in a detention (or any) facility. We are also aware from the experience of children torn away from parents with disabilities due to prejudice that this creates lifelong trauma responses for these children.
Statement on Immigration Actions
The Trump administration callously uses children as pawns in its war on immigrants. First in its repeal of the Deferred Action for Childhood Arrivals and now with its policy of arresting everyone who crosses our southern border illegally, the administration cynically inflicts permanent damage on children, punts the solution to Congress and then obstructs every Congressional effort to respond.
These tactics must be called what they are: barbaric, inhumane and fundamentally racist.
President Trump’s executive order allowing children to remain with their parents does not change that assessment. More than 2,300 children have already been separated from their families, and their location and plans to reunite them have not been addressed.
The order appears only to allow children to remain with their parents for the first 20 days. It is unclear whether or when facilities to house families during this period will be available. A solution that addresses housing after the first 20 days is dependent on Congress or the courts — which is by no means a certain path — and the administration has no plans in the case of inaction by these other branches of government.
Even where these issues are resolved, children do not belong in cages; they should not be locked up in any fashion — with or without their parents. And parents fleeing violence and deprivation should not be prosecuted indiscriminately.
Colorado Center on Law and Policy
Colorado Center on Law & Policy
303-573-5669 ext. 311 (office)
Colorado Medicaid Agency Takes Money Away From Medicaid Clients & Denies Due Process Rights to Coloradans With Disabilities
On December 23, 2009, the Colorado Cross-Disability Coalition (“CCDC”) filed a class action lawsuit against the Colorado Department of Health Care Policy and Financing (“Department”) in the Denver District Court of Colorado requesting that the Court order the State to retract the cuts in the amounts Medicaid clients are entitled to receive to pay for in-home attendant until it is able to implement the cuts without violating the due process rights of Colorado residents with disabilities. See attached complaint.
This lawsuit is the second lawsuit filed this week by the CCDC against the Department recently. The other recent lawsuit, filed December 18, alleges the Department failed to insure payment for needed Medicaid services for an individual with multiple disabilities who needs additional in-home services after having a tracheotomy performed and being discharged from the hospital.
The present case alleges the Department is taking money away from Medicaid clients for needed services without giving them notice and an opportunity to appeal the decision in violation of longstanding Supreme Court rulings and federal law regarding due process rights under the United States Constitution.
Since the Consumer Directed Attendant Support Services (“CDASS”) program was implemented in 2003, approximately 1,000 Colorado residents with disabilities have enjoyed the ability to manage their own in-home attendant care to assist with activities of daily living. They are responsible for such administrative tasks as interviewing, hiring, training, supervising, and sometimes firing the attendants of their choosing.
In addition to giving people with disabilities control over their own attendant care, the CDASS program was implemented to save the State money by eliminating the payments to home health care agencies for the administrative tasks that many Medicaid clients are more than capable of performing themselves. The State, in conjunction with the Medicaid client, determines the allotted amount of Medicaid funds each CDASS client can use towards their in-home attendant care.
In September, 2009, according to the Department, due to State budget cuts, CDASS clients’ allocations were reduced by 1.5%. However, many clients did not receive any notice of this reduction until six weeks later in mid-October, and some received no notice at all. For some CDASS clients, any reduction they have available to pay for attendant services means they must forego those needed services. Clients were terrified to learn suddenly that they may have gone over budget paying their attendants. County case workers can impose consequences on clients who over budget that can endanger a person’s independence within the CDASS program. Over-budgeting can mean they are kicked off the program altogether.
In the first week of December, 2009, CDASS clients received another letter informing them that their allocations were once again being cut, this time by 1%. Again, some clients received no notice of this change at all. Those who did receive a letter became very concerned when looking at the numbers stated in the correspondence. Although the letters stated they would see a 1% decrease, their new allocations reflected a much different scenario. From what CCDC has learned so far, clients received reductions anywhere from 2.14% to 4.06% (and possibly more) with no explanation of the mathematic inaccuracies, except that some unknown amount of their funding was taken away to pay a new fiscal intermediary service the Department hired, starting December 1, 2009. This company is Public Partnerships LLC Colorado (“PPL Colorado”).
Many clients are already using every last cent of their monthly allocations, carefully scheduling attendants down to the minute, while minding their responsibility to avoid going over their allocation budget. It is nearly impossible for CDASS clients to effectively schedule their attendant care without any idea as to the financial limitations to which they are expected to adhere.
The additional, unexplained inconsistent reductions in allocations can only be explained as the payment to PPL Colorado The Department told clients the change to the new company would have “no affect” on allocations.
The Due Process clause of the United States Constitution, federal and Colorado law require that Medicaid clients receive advanced notice and an explanation of their right to appeal these allocation reductions. By not doing so, the State is violating the due process rights of Colorado residents with disabilities.
CCDC is Colorado’s only statewide disability rights advocacy organization. CCDC’s mission and purpose include preventing discrimination against people with disabilities, including the forced institutionalization of individuals with disabilities. CCDC works to ensure that state agencies like the Department provide due process of law when depriving individuals with disabilities of benefits for needed services. For more information about CCDC go to www.ccdconline.org.
Equal Rights Center and Colorado Cross-Disability Coalition File Suits Against Abercrombie & Fitch Co. for Discriminating Against People with Disabilities
WASHINGTON, D.C., November 24, 2009 –Today the Equal Rights Center (ERC), a national civil rights non-profit, and the Colorado Cross-Disability Coalition (CCDC), a statewide disability rights advocacy organization, filed federal lawsuits in Colorado and Maryland against Abercrombie & Fitch Co.—including Hollister and Abercrombie & Fitch stores—alleging that the stores using these brands fail to provide adequate access to goods and facilities to people with disabilities.
The Hollister brand of Abercrombie & Fitch Co. was launched in 2000, nearly a decade after the passage of the Americans with Disabilities Act (ADA). Hollister stores rely on a signature style of construction, which usually includes steps to a porch-like entrance. These entrances with steps are inaccessible to individuals with disabilities. Customers who use wheelchairs or
scooters for mobility are forced to use a segregated door located away from the main entrance. Signage directing customers with disabilities to this door is often hidden or does not exist, and in some cases this door is kept locked. Abercrombie & Fitch Co. has refused to remove the steps, despite requests from organizations representing people with disabilities.
“It is shocking and frustrating that nearly 20 years after the passage of the Americans with Disabilities Act, international corporations still discriminate against people with disabilities,” said Kevin Williams, CCDC’s Legal Program Director and the attorney bringing one of the cases. “The Colorado Cross-Disability Coalition members and millions of others across the country should not be forced to encounter discrimination this holiday season—or any other time of the year—when attempting to participate in the same activities as people without disabilities.”
According to the complaints filed today in U.S. District Courts in both Colorado and Maryland, Abercrombie & Fitch Co., the international chain of clothing stores with 1,127 stores located in 49 states, the District of Columbia, Canada and the U.K., has many locations that violate the ADA, a federal law that requires places of public accommodation to be accessible to people with
The ERC and the CCDC also allege that, despite the average square footage of 6,746 in a Hollister store and 8,888 in an Abercrombie & Fitch store, the interiors of both are largely inaccessible. The ERC has conducted investigations of Hollister and Abercrombie & Fitch stores in nine states and the District of Columbia. Investigations conducted by the ERC and the
Steps into the stores, and side entrance doors that are locked;
Service counters that are too high for customers who use wheelchairs to reach or use;
Merchandise displays and other internal décor that block access throughout the stores for individuals who use wheelchairs; and
Fixed shelving merchandise displays that are inaccessible.
“Abercrombie & Fitch Co. designed its Hollister and Abercrombie & Fitch brand stores with full knowledge of the Americans with Disabilities Act, yet still chose to construct stores with physical barriers that prohibit people with disabilities from fully enjoying their services,” said Don Kahl, Executive Director of the ERC. “In this economy and with the holiday season approaching, Abercrombie & Fitch Co. should consider not only the moral ramifications of its conduct, but also the business effect of being inaccessible to the millions of buyers in America
The ERC is represented by the Washington Lawyers’ Committee for Civil Rights & Urban Affairs and the law firm of Vinson and Elkins, LLP.
About the Equal Rights Center (www.equalrightscenter.org)
Since 1983, the Equal Rights Center (ERC), a national non-profit civil rights organization, has worked to identify, challenge, and
eliminate discrimination. The ERC combats discrimination in housing, employment, access to public accommodations and
government services, disability rights and immigrant rights, through education and outreach, research, testing, counseling,
advocacy and enforcement.
About the Colorado Cross-Disability Coalition (www.ccdconline.org)
The Colorado Cross-Disability Coalition (CCDC) is a statewide organization run by and for people with all types of disabilities to
promote social justice and create systems change for people with all types of disabilities. The CCDC accomplishes its mission by
changing systems through organizing, advocacy, education, and systemic change.
2009 Memorial Award Winners!
CCDC is proud to announce the winners of the 2009 Memorial Awards honoring their dedicated work in advancing and preserving the rights of persons with disabilities and improving quality of life issues.
Pamela S Carter for the Jeanette Klimach and George Roberts “Foot Soldier Award”
Colorado Coalition for the Homeless for the Jerry Urban “David and Goliath” Organization Award
Arthur Powers for the Jerry Urban “David and Goliath” Individual Award
Wendy Schultz for the Lucille Weiss Award for Commitment to Education for Person’s with Disabilities
Pamela Moir for the Juli Stewart Caregiver Award
Julian Johnson for the Patrick Zimmerman Award For Excellence in Self Empowerment and Youth Leadership
Leslie Taylor for the Ron Halsey Award for Improving Life for People with Disabilities in Rural Colorado
Congratulations to the winners and thank you for your perseverance!
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