by Brigitta Hebdron
My son has Fragile X Syndrome, a genetic cause of autism. One of the first challenges we faced was disrupted sleep patterns. He was up crying loudly many nights long after the family was asleep. By the time he was eighteen months old, he shared a room with his older sister. When he awoke, I ran to their second-floor bedroom, swept him up in my arms, and carried him quickly down to my bedroom on the first floor, attempting to keep him from waking his sisters who required a good night’s sleep for school. Once, I dropped him in my sluggish attempt to hurry down the dark stairs in the middle of the night. To this day, that’s the only concussion he has ever had.
When he finally slept through the night, at seven, and after being on meds for months, I was ready throw a party! A “sleepover” with one guest… me! We didn’t live in Colorado during most of those early years. When we moved here, I was shocked to find out that, after years of dealing with the exhaustion of disrupted sleep, his acquired ability to sleep through the night could have prevented him from qualifying for the CES Waiver.
The Code of Colorado Regulations, found on the Colorado Secretary of State website states the following about CES Waiver Eligibility:
“The individual demonstrates a behavior or has a medical condition that requires direct human intervention, more intense than a verbal reminder, redirection or brief observation of status, at least once every two hours during the day and on a weekly average of once every three hours during the night.” https://www.sos.state.co.us/CCR/GenerateRulePdf.do?ruleVersionId=6591&fileName=10%20CCR%202 505-10%208.500
So, if you have a child with disabilities, regardless of diagnosis, severity of needs, physical or behavioral challenges, if he does not require you to be up with him every three hours during the night he doesn’t qualify for a much-needed waiver, according to the State of Colorado? Yep, that’s right. Regardless of the child’s cognitive or adaptive IQ, regardless of his daytime behaviors, regardless of incontinence, vomiting, or seizures.
I am not an expert in all disabilities, but I am an expert in being a mom of kids with special needs. I think I can easily speak for all of us when I say, at the very least, it’s an exhausting life, even on the best days. Often, our only respite comes when our children finally go to sleep. My son is eighteen now, and l still threaten the life of anyone who wakes him up after I finally get him to sleep. I have spoken to many moms of children with disabilities, sometimes truly debilitating disabilities, who say their kids sleep through the night. Isn’t that the mark of good mommying, when children are comfortable and sleeping soundly in their own beds at night?
To add salt to this wound, I have been advised that wakefulness due to incontinence “isn’t enough to fulfill the state’s requirement.” What? You’re joking. It wasn’t enough that he was up, and I had to repeat the bedtime routine as I cleaned him up, made up a clean place for him to sleep (admittedly, not always his bed, sometimes just a palette on the floor,) and get him to calm down and go back to sleep at 3AM? Bed-wetting wasn’t a good enough reason?
This narrow, archaic, and frankly, uneducated policy that is strictly enforced in Colorado must be revised. Disabilities are as diverse as all the people on earth. What affects one, does not affect all, even among those who have the same diagnosis. Not all kids with autism have disrupted sleep patterns. Many, like my son, experience that symptom when they are young, but eventually manage it through meds.
I tried to research the history of the CES Waiver to figure out how this policy originated. I found nothing on the internet. So, who decided it? And why? Why sleep? Why not seizures, perseverating, incontinence, immobility, IQ, etc? I could go on and on… What determines which “symptom” should outweigh the others? My dear friend, whose son is nonverbal probably wouldn’t trade places with me on the day my son put his fist through my windshield. Whose need is greater? If both boys sleep through the night are both families undeserving of the interventions the CES Waiver enables?
Dear Colorado Medicaid, it’s 2019, we expect you to contemporize your views on raising children with disabilities. The one thing families like mine deserve is a good night’s sleep!
**All Blogs reflect the opinions/experiences of people with disabilities or family members of people with disabilities. They do not reflect CCDC’s official position on any portion of Medicaid services.
We lost a great judge. We lost a great person. Senior District Court Judge Wiley Y. Daniel passed away on May 10, 2019. All of the lawyers and their clients who have brought cases in the United States District Court of Colorado before Judge Daniel and all of those lawyers and their clients who could’ve brought cases before Judge Daniel will never be the same. The author of this blog has practiced law in this district for 22 years (in three days it will be 23 years), and I have had the great privilege of practicing before Judge Daniel on numerous occasions. Not enough, but several. He was different in many ways, all of them good.
I certainly do not mean any disrespect to any of the judges in front of whom I have practiced before. Or to any of those in front of whom I currently practice. And it would be inappropriate to comment publicly about judges before whom I might practice. But I must say this: Judge Daniel has always been my favorite. There are too many reasons to list in a blog, but I will do my best to hit the highlights. I want you to know. I feel a great sadness that I will no longer have the fortune to practice before this great judge and great human being ever again. I feel a great sadness that he is no longer with us.
All practicing lawyers, especially those like me who practice in a particular area (in my case, disability rights law as an individual who uses a motorized wheelchair) probably have certain judges they might prefer. They might prefer those judges because, for those of us who practice in federal court, we practice before judges who are nominated by the President of the United States who are then confirmed by the United States Senate; some of us might believe (and some of us do believe) that those political affiliations will color the opinions, attitudes and judgments of our judges. Some practicing lawyers simply might not like the personality of a particular judge. I remember well a particular judge whom most lawyers I know feared yet I never did because I found the particular judge to be fair even though the judge was known for being temperamental, disagreeable and for having a generally antagonistic personality. Some practicing lawyers might dislike a certain judge because that judge opposed the lawyer on a case when the judge was still practicing and had not yet been appointed and confirmed to the bench. There are many reasons why some practicing lawyers don’t like certain judges.
But some judges are just likable no matter what. In this practicing lawyer’s opinion, Judge Daniel was that kind of judge.
As many of you know, in civil practice, lawyers do not go to trial on many cases; nevertheless, we do have many legal arguments we must make before judges regularly in many of our cases. I and my co-counsel had the pleasure of arguing cases before Judge Daniel several times. Judge Daniel was simply different.
One of the most important differences is that Judge Daniel was about “telling it like it is.” This is a theme that describes everything good I have ever felt about him.
The Guidepost: Judge Daniel told it like it was the moment he entered the courtroom, and we heard, “All rise!” We knew that what was coming was going to be the straightforward, simple, plainspoken truth. Often, Judge Daniel would begin a hearing with a statement something like the following: “I have just a couple of comments before we begin.” Or, “Here is what we are going to do today, and here is what we are not going to do today.” These guideposts always told the parties where he was coming from and where he wanted us to go. Even though I don’t believe I have ever practiced before a fairer judge, Judge Daniel made his brief comments (1) to let us all know he knew the history of the case inside and out; (2) this is what the proceeding was about; (3) this was where his interests for the course of the proceeding were; and (4) we had better follow them because otherwise we were wasting time. A guidepost from the Court is something a practicing lawyer (no matter how many years we have been at it) is very thankful for when entering the courtroom. Judge Daniel told us what he wanted, why he wanted it and why it wasn’t worth bothering doing anything else.
Fairness. Even though Judge Daniel gave us all the guidepost on his way into the hearing, he never failed to make sure the lawyer who might not have received the telegraphed message during the guidepost commentary had the opportunity to make the lawyer’s client’s case. The record was always clear. Both sides would have the opportunity to make all of their arguments before one of them was reminded of the rules set forth in the guidepost. He also found it very important to treat every lawyer and client with the greatest amount of respect. I never saw or heard Judge Daniel be unkind or derogatory in the slightest way to anyone. I also always found him to be very accommodating for attorneys with disabilities and our clients who have disabilities. He did so without even thinking about it. It was just a natural part of who he was and how he understood his role in the “people’s courthouse.”
Writing: I love reading Judge Daniel’s orders. Short, brief, simple and straight-to-the-point sentences. No words wasted. Everything there that needed to be was. Nothing that did not. Looking back over his orders in our cases, he usually cited to one case for legal authority instead of some long, unnecessary string cite. Why bother, when one case will do? He wrote like he talked: He told it like it was.
There are so many other reasons why some other practicing lawyers including myself may have really had great respect for Judge Daniel.
He was the first African-American judge appointed to the United States District Court of Colorado, appointed by President Bill Clinton in 1995. He was born on September 10, 1946, in Louisville Kentucky. He also attended Howard University both as an undergraduate, receiving his Bachelor’s Degree in 1968 and his Juris Doctor Degree in 1971. Howard University is the alma mater of one of my heroes, United States Supreme Court Justice Thurgood Marshall after Justice Marshall was denied admission to the University of Maryland College of Law in 1930 because he was Black.
In 2017, the Center for Legal Inclusiveness presented Judge Daniel with The Lifetime Achievement Award. I think many of the reasons why I greatly respect, like and will miss Judge Daniel are best summed up here in his own words and in his own voice:
Despite the fact that the United States District Court was established in 1876, the only other Black judge appointed to the United States District Court of Colorado is Raymond Moore. Judge Moore was appointed by President Barack Obama in 2013.
 He once said in one of our hearings in a case that happened about 4 1/2 years after the case started and every motion a lawyer could dream of was filed in the case (I won’t say by whom): “Unfortunately, even though I’m a Senior Judge, my memory is just as good as before. What can I say, it’s a blessing, but also a curse, sometimes.” Either way, it was always true. He knew the case. We did not have to worry about that.
 A typical sentence look like this: “I disagree with this assertion for the reasons stated above.” “I find this argument an attempt by Defendants to re-litigate Plaintiffs’ standing.” “The named Plaintiffs have suffered and will suffer in the future if the Elevated Entrances are not removed.” Maybe that is why Judge Daniel’s Practice Standards warned lawyers like me, “Excessive or prolix statement of facts sections will be STRICKEN.” The bolding appears in his Practice Standards. Why bother using something like “exceedingly and superfluous” when you can simply say “prolix?”
 I generally use the word “Black” instead of the word “African-American” even though I know that different individuals prefer different terms, which is why I use the term “African-American” here because it is the term the judge Daniel used. I have been corrected by many friends and colleagues when I have referred to them as “African-American.” They have explained to me just as I am considered “White,” they are considered “Black.” I have been corrected by friends and colleagues that do not feel as though they are “African-American” because they have no connection to the country of Africa. This makes sense to me since I too was born in this country and many of my ancestors were as well; I don’t feel connected to any other country except America and yet my race is described as “White” or sometimes as “Caucasian,” not as “Welsh-American” or “German American.”
ADAPT and Disability Rights Community Praise Colorado for Becoming the Second State to Have Entire Delegation as Cosponsors of the Disability Integration Act (S117/HR555)
Colorado has become the second state to have their entire Congressional delegation cosponsor the Disability Integration Act only 21 days since introduction of the bill on January 15, 2019.
The Disability Integration Act is a bill that affirms the right of people with disabilities and seniors to live in freedom, rather than be forced into unwanted institutionalization. It would require states and insurance providers who pay for institutional placement to also offer long term services and supports in the community.
“We know that it will take members of Congress from both side of the aisle to make DIA the law of the land,” said Dawn Russell, an organizer with Atlantis ADAPT in Denver, Colorado. “We want to thank every member of Colorado’s delegation for supporting the rights of disabled people to live in freedom, especially Senator Gardner who was the first Republican on the Senate bill.”
DIA has widespread support from over 730 organizations from across the nation. At the DIA introduction event, AARP announced their support for the bill, illustrating support from the aging community and the importance of seniors being able to age in their own homes instead of being forced into nursing facilities as they grow older.
“Individuals with disabilities should have the right to live in the setting that best fits their needs and allows them to live as independently as possible in their community” said Senator Gardner, the Republican lead in the US Senate. “After hearing first-hand from the ADAPT community in Colorado, I was proud to be the first Senate Republican to champion this critical legislation that will help ensure individuals living with disabilities are provided the flexibility to live how they choose.”
Colorado joins Vermont on the growing list of states that have their entire delegation as cosponsors of DIA. “We were thrilled that all of our members of Congress from Vermont were original cosponsors of the Disability Integration Act this session, and we are excited to see more states join us!” said Sarah Launderville, the Executive Director of the Vermont Center for Independent Living. “I think this really demonstrates the importance of ensuring that disabled and elderly Americans can live in the community.”
ADAPT and the broader Disability Community have called upon the House of Representatives to pass DIA before July 26th of this year, which will also mark the 29th anniversary of the signing of the Americans with Disabilities Act.
One year ago today, the Department of Justice reached an agreement with the City and County of Denver (“City”) under Project Civic Access (“PCA”), the Department’s initiative to ensure that cities, towns, and counties throughout the country comply with the Americans with Disabilities Act (“ADA”). That agreement covers accessibility to numerous programs, services, activities and facilities throughout Denver. The agreement specifically addresses Law Enforcement and Effective Communication, Polling Places, Emergency Management Procedures and Policies, Physical Changes to Emergency Shelters, Web-Based Services and Programs, New Construction, Alterations and Physical Changes to Facilities, Programs for Victims of Domestic Violence and Abuse. Many of the deadlines for compliance occurred today, one year after the effective date of the agreement. Click on these links to review the DOJ Press Release and for the DOJ Settlement Agreement. Also, attached is a PDF version of the Agreement with all of the one-year deadlines highlighted.
The Settlement Agreement contains one error in that it states that “On January 20, 2016, Denver and the Civil Rights Education and Enforcement Center [“CREEC”] reached a separate agreement addressing accessible sidewalks and curb ramps in Denver.” It is correct that CREEC with the assistance of CCDC reached a class action settlement agreement with the City regarding curb ramps, but sidewalks were not addressed. Click on the link to review the Curb Ramp Settlement Agreement. Click on the link here to see CREEC’s Website. This Settlement Agreement provides for comprehensive curb ramp replacement throughout the City. CCDC is unaware of why the issue of sidewalks was excluded from the DOJ Settlement Agreement with the City because the case involving curb ramps was never intended to address sidewalks and was approved by the court as a class-action settlement on September 9, 2016 before the DOJ Settlement Agreement. Click the link here to review the Order Granting Final Approval of Settlement. The rules and regulations that apply to curb ramps are different from those that apply to sidewalks.
With respect to sidewalks, according to a recent article published in the Denverite, the City has launched a project to install sidewalks where they don’t exist and make additional sidewalk repairs. At this time, CCDC does not have additional information regarding the sidewalk project. Click on the link here to see the Denverite article regarding sidewalks.
According to the Denver Office of Disability Rights’ (“DODR”) website, “The Denver Office of Disability Rights coordinates the City and County of Denver’s efforts to ensure compliance with Title II of the Americans with Disabilities Act (ADA). Our role is to ensure that all City services and programs are accessible to people with disabilities.” Information is provided on the DODR website regarding curb ramp renovations and installation and the City’s plan for sidewalks and transportation. The DODR is also listed as the agency to which all notifications or communications under the DOJ Settlement Agreement are to be made. Click here for the link for the Denver Office of Disability Rights. The address and other contact information for the DODR is:
Denver Office of Disability Rights
201 W Colfax, Dept 1102
Denver, CO 80202
Legal Program Director
CCDC Civil Rights Legal Program
As of November 26, 2018, until February 1, 2019, the CCDC Civil Rights Legal Program will not be taking any new cases or intakes. We do not receive funding to provide referrals. Therefore, if you have a legal problem that you think we can assist with, you will need to contact another attorney until January 1, 2018. We apologize for the inconvenience. We will not be returning calls or other intake emails, including social media or by any other method.
The CCDC Board of Directors is writing/updating our strategic plan. This is the first of several surveys we will have to get members input. If you get this survey via an email from CCDC then you are a member. https://www.surveymonkey.com/r/5J5PLQW
If you get this survey from another source then you are NOT listed as a member and should join as a member. It is free and you can choose what topics, if any, about which we will contact you. You can join at www.ccdconline.org
Your feedback is important. This survey is about our organizational values. Our current plan summary is attached. stratplansummary
The next survey will be about our VISION.
Thank you for your time.
New Shuttle service in Denver. According to reporting in Denverite “Chariot is like a bus but also like a Lyft but also it’s a van. It works like this: Riders reserve a seat on the 14-passenger car through an app (like Lyft), but it will only pick-up and drop-off at predetermined stops (like a bus).” (Emphasis added.) This sounds like another interesting Denver transportation option. See also New ride-share Chariot company launches in Denver, free for first six months.
However, there are several questions raised by CCDC? Will it be accessible to people with disabilities. Photo shows CCDC Transportation Advocate Jamie Lewis boarding one of the vehicles. Are all of the vehicles accessible to individuals who use wheelchairs? Why or why not? If not, does the Chariot Service provide “equivalent facilitation” for individuals who use wheelchairs? How would a person who uses a wheelchair know ahead of time how to go about reserving an accessible vehicle? Does the app inform individuals who use wheelchairs how to go about reserving an accessible vehicle? Interesting questions for a City that is supposed to be “one of the most accessible in the country.” How about we consider accessibility for all when creating new transportation services, buildings, housing, etc.?
Under the ADA,
No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of specified public transportation services provided by a private entity that is primarily engaged in the business of transporting people and whose operations affect commerce.
42 U.S.C. § 12184 (a). And, discrimination includes
the purchase or lease by such entity of a new vehicle (other than an automobile, a van with a seating capacity of less than 8 passengers, including the driver, . . . which is to be used to provide specified public transportation . . . that is not readily accessible to and usable by individuals with disabilities, including individuals who use wheelchairs; except that the new vehicle need not be readily accessible to and usable by such individuals if the new vehicle is to be used solely in a demand responsive system and if the entity can demonstrate that such system, when viewed in its entirety, provides a level of service to such individuals equivalent to the level of service provided to the general public[.]
42 U.S.C. § 12184(b)(3)(emphasis added).
CCDC always looks forward to new, convenient available methods of transportation in Denver that include people with disabilities, including those who use wheelchairs, especially those that are equally accessible with respect to methods of reserving that transportation. Transportation options are really limited for people who use wheelchairs. Uber and Lyft and private taxis are not accessible. Getting an accessible cab is often next to impossible.
Welcome, Chariot! We look forward to the new, temporarily free service available on an equal basis to everyone.
The “AND” program will see some major changes soon. Yes, this is a State program and as you can read have not made efforts to change the words like needy. However, we hope that these rule changes by the State Board of Human Services will help serve our community better. Two of the largest victories are, increase in monthly payment from 189 to 217 dollars and rules to provide applicant more time to qualify for benefits. Please see file “AND VICTORY” above for more information. CCDC wants to give a shout out to the Colorado Center on Law and Policy for their work in making these changes a reality.
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.