Five years ago, our son Isaac was diagnosed with SMA Type 1. He was four months old, and I remember talking to my family about the implications of the diagnosis. We went from coming to terms with the knowledge that Isaac would likely spend his life in a wheelchair to realizing that his prognosis was much worse than “he’ll never walk.” He would not sit. He would not eat. He would not swallow, speak, turn his head, move his hands. He would not breathe on his own. He would not likely live to see his first birthday. There was no cure. There was no treatment. All the while, he would be the sweetest, happiest, brightest little boy. We were devastated, and, even today, that word does not capture what we really felt. We prayed he would live long enough for his older sister to remember him. We prayed that when his time came, we would all be there with him.
But Isaac did live to his first birthday, and then to his second. He loved reading books and playing with switch activated toys, coloring with his sister and swimming with his daddy. He started vocalizing to communicate, and talking and playing with his eye gaze activated communication device. Fast forward to his third birthday, a few months after the FDA approval of the first treatment for Spinal Muscular Atrophy (SMA). We knew it would not be a cure, but we hoped it would keep him from losing what strength he still had. Isaac received his first doses of the drug and promptly started turning and nodding his head. He gained strength in his extremities. He started working with his physical and occupational therapists to sit upright with support and to operate a joystick. As he outgrew his medical stroller, we started talking about a power chair. All of his physicians and therapists agreed that he could manage it, that it would benefit him, and his friends at school started getting excited to race him on the playground!
When he was three and a half years old, Isaac completed his first power chair trial at NuMotion. He was amazing! We knew the insurance process would be long. Since we had such good experiences with his Medicaid in the past, we were not overly concerned. We celebrated Isaac’s fourth birthday. NuMotion provided Medicaid with additional information. Medicaid was slow to respond. Finally, more than a year after his initial trial, Medicaid officially denied Isaac’s power chair. The only problem was that they never told us. We waited and waited for a reply from Medicaid, and finally we reached out to CCDC for help. CCDC Non-Attorney certified advocate and graduate student intern, Nicole Bishop, was assigned to our case, and from the very start, I knew we were in good hands. She was completing her internship and had additional support from what seemed like the entire CCDC staff. I remember that it was around Christmas time when we started the appeal process, and Nicole had some serious digging to do. She discovered that the chair had been denied, and then she filed for improper notice of denial. We celebrated Isaac’s fifth birthday, then we set a date for the court hearing. We began gathering evidence that Isaac could drive the chair, and that he would be able to drive it in all of the needed environments. NuMotion bent over backward to get Isaac a demo chair for us to take home for a weekend. We took so many videos of him driving!
When we had about a week left to gather documents and evidence and compile a witness list, Nicole called the court to verify the best format for submitting the videos. Late that Monday afternoon, she learned that, since we were sending videos, the court would really like all of the materials by Wednesday. Nicole and I allowed ourselves a moment of panic, but then we put our heads down and pushed on. I spent the night editing videos and sending pleading emails to Isaac’s medical team for them to rush their letters of support by the next day instead of the next week. Every single one of them responded with the letter, some of them arriving in my inbox after midnight. The next morning, as I sent Nicole yet another email (seriously, you should see the chains we had going), I noticed that her last email to me had been sent at 4:30 a.m. She had stayed up all night, literally, to prepare Isaac’s case. I was overcome with gratitude at the lengths people would go to in order to help Isaac. And we did it, we submitted everything in time! Then we waited.
Just as Nicole was starting to prepare all of the witnesses for the court hearing, we heard the best news. I opened my email, and there, in the subject line, “We won!” I opened the email, read it twice, and screamed! I ran to Isaac and told him that he was getting his power chair. He shrieked with joy, his sister shrieked with joy. My husband came in to ask what was going on, and he sighed with such relief. I cried when I heard that two other children had their chairs approved along with Isaac. We would not have to go to court because the evidence we had gathered was enough to convince Medicaid that Isaac could and should drive a power chair. Nicole, and her mentors at CCDC, were exactly who we needed to help Isaac get his chair, and for the first time in his life, a measure of independence.
This past week, we went to pick up Isaac’s power chair. It is his favorite color, bright orange. He is practicing every day so that he can safely drive it independently. We can’t wait to see where it takes him!
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.”
You will not find restaurant reviews on the CCDC blog often, and almost never by me, but today is different. CCDC took the members of our legislative team who were available to lunch today at Pizzability at 250 Steele Street to thank them for their many hours of tireless work this session. They were an admirable team and deserved more than lunch. However, lunch and our undying gratitude are what we can provide. Our amazing community organizer Dawn Howard chose the location.
Like most restaurants in Cherry Creek North, it is physically small. Unlike any other restaurant in that area where I have eaten, I did not feel in the way—even when I was objectively in the way. In any space, when a bunch of us come in at the busy hour we can be..well…in the way. It only takes a couple of wheelchairs, never mind some canes, walkers, dogs, and general klutziness to make us seem like we are taking over. When we are doing an action that is exactly what we want, but when we go to eat out, whether individually or in a small group we do not want to feel as if our mere presence is an inconvenience. So today we show up and our presence overwhelms the place both physically and logistically. Yet we are greeted with warmth and genuine pleasure that we are there. When I was objectively in the way blocking an aisle no one bumped into me, no one asked me to move, no one gave me “the look”. No employee rushed to serve me quickly for the purpose of getting me out of the way.
Most of our crew had ordered but there were three of us left when I arrived. The bill for three lunches in Cherry Creek North came to $16. The food was good. Most significant for me is that they had Gelato—I saw that and forgot about pizza. The slices that my colleagues ate looked terrific. They were big, and hot and had many varieties. Salads were an option also and non-alcoholic drinks appeared to be free with the pizza. They had some alcohol for sale as well…soon they will have pairing suggestions.
As you might guess by the name, this is a restaurant that sells mostly pizza and most of the employees are people with disabilities, particularly people who appeared to have intellectual and developmental disabilities. Most of the customers eating there today appeared to have disabilities as well.
My personal food tastes are more in line with other places in Cherry Creek North. Earlier this week I had an hour in between meetings in that part of town and went somewhere else. The food I like (and admit it is kind of ridiculous food) is more like an overpriced salad with things like goat cheese, grapes, and cranberries. I had that with unsweetened tea (trying to be good diet wise) and while the food was delicious, and there was much more physical space in this place than at Pizzability, I felt completely in the way the entire time I was there. It was uncomfortable. While no one was rude or even unkind it was my presence was made people uncomfortable. I had to ask several people to move to get to a space to eat. I actually considered getting it to go even though it was raining and cold that day. I am sure the people in this restaurant (staff and customers) would have been relieved had I just taken the food to go. Today, when some of choose to sit outside at the tables (it was probably 60 degrees and felt lovely) they asked repeatedly if we were sure we were comfortable and offered to move things around if we preferred to be inside. The offer was made in a manner that showed respect and that they valued our business.
There were other cool features. The menus are paper and you circle what you wanted and write your name. Accessible for Deaf folks and people that do not speak English, do not read, etc. Some work would be required to make it accessible for blind folks (there is a menu online). There was a “sensory corner” with various objects. Each plate was different and they were painted by artists from the Access Gallery (an art gallery for disabled artists).
There did appear to be someone without a visible disability running things and the way she talked there was a training component for employees. (I learned later on their facebook page that this is indeed a training program)The employees were working hard and seemed happy, and the work is real work that valued employees do in restaurants every day. If part of the goal is to train workers for “integrated” jobs, I am sure that will work. However, some employees may want to stay and be around others with disabilities. Maybe some will become supervisors or trainers. Maybe some will prefer to keep doing the great job they are doing today.
Is this segregated? Maybe? Not sure that it matters because it is a choice. Doing a good job and being paid for work, and continuing to learn and improve at one’s job is what adults do in our society. Other groups have businesses that are primarily run by and serve specific communities. They do not eschew customers from outside groups but they cater to their own communities. This is how disenfranchized communities build economic power. There are “pink pages” advertising gay-owned businesses. There are Latinx and Black Chambers. Why not promote and support more disability-run/disability positive businesses? Non-disabled people can work and eat there but the atmosphere and culture stay disability positive. Just like as a white person I can go to eatery owned, staffed, and patronized mostly by people of color. I am welcome to show up but not to inappropriately take over the culture of the place (as white people often want to do). Communities of color started and continue these businesses because there is an economic and cultural need for spaces that do not have to bend to the dominant culture. That is cultural pride, not involuntary segregation. We need to start understanding the difference.
We need businesses like this in our community..that is by and for our people. Where non-disabled allies are welcomed but where our disability culture and our vibe will stay the dominant feeling. We need to stop defining success by how much we interact with people who do not have disabilities.
I know that I preferred eating lunch in a disability positive environment, among not only my peers/colleagues with disabilities but among other customers and employees with disabilities. I would rather eat in a place where I feel comfortable and welcome than in a place where I am obviously in the way. The next time I happen to have an hour in between meetings in Cherry Creek North, Pizzability will get my business! I encourage you all to do the same. I am sure they will also welcome those of you without disabilities too.
Keep Your Eyes on the Prize
The results of this past Tuesday’s municipal election in Denver were, I think, a grave sadness to most of us believe in. In many ways, fear and the status quo defeated human rights, money defeated compassion about poverty, and misinformation triumphed over all. But, even with all of that said, many races are going to runoffs, and many of those races pit candidates of the status quo against people who believe in human rights, in greater accessibility in our city, in criminal justice reform, and so many more issues that I believe are our issues nearly as much as Medicaid, LTSS, and CDASS are. So, as the great folk song and spiritual says:
Keep your eyes on the prize, hold on
Freedom’s name is mighty sweet
And soon we’re gonna meet
Keep your eyes on the prize, hold on
We are not done. For those of us who live in northwestern Denver, north-central Denver, including downtown, Five Points, Elyria-Swansea, and beyond, a stretch of central Denver from eastern Capitol Hill to north Cherry Creek, and even in east-central Denver, we are not done and we must keep our eyes on the prize with these runoff elections. I know we want to slow down after the legislative session and the first round of balloting in the municipal election, whether in weariness or frustration, or both. But we can’t do that just yet. Our city deserves better and our community does too.
This was a busy session as is typical whenever there is a new administration and many new legislators. Despite some unfortunate partisanship that caused delays, the reading out loud of 2000 page bills, hearings that occurred during a blizzard, and overnight sessions some great work did get done that will benefit the people of Colorado including people with disabilities.
Before talking about the bills, I want to call out the amazing CCDC team that worked at the Capitol this year.
CCDC wants to thank our many partners, in particular the Arc of Colorado, Arc of Aurora, Arc of Adams, the Colorado Center on Law and Policy, the Colorado Children’s Campaign, 9-5 Colorado, ACLU of Colorado, Colorado Senior Lobby, Disability Law Colorado, Colorado Common Cause, PASCO, and Accent on Independence Homecare amongst others. We also want to thank Colorado Capitol Watch for a great product that made tracking the bills easier.
Because this was a year with many new legislators and many groups rushing to push through bills that had struggled in years past, many of which were bills we were going to support, CCDC made a deliberate decision to NOT run our own proactive bills this year but to focus on our coalition work, and building relationships with the many new Senators and Representatives. We laid groundwork for policies we want to promote over the next few years while focusing on the many coalition bills and responding to bills that affected our community. We followed 139 bills. This report shares the highlights-not every bill that we worked on during the session.
This is being dubbed the year of the renter. There were many bills that helped renters, along with some that will fund affordable housing.
THERE WERE A NUMBER OF BILLS RELATED TO THE COST OF PRIVATE INSURANCE AND HOSPITALS. PLEASE CHECK OUT THE COLORADO CONSUMER INITIATIVE OR THE COLORADO CENTER ON LAW AND POLICY FOR REPORTS ON THOSE BILLS.
Overall it was a good year. There were some disappointments, but there always are—now we have to make sure the bills we like get implemented and make sure people know about these new laws and programs.
“The arc of the moral universe is long, but it bends toward justice.” ~ Martin Luther King Jr.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” ~ Margaret Mead
The quotes above are apt for the power we showed two weeks ago as many of us in the disability community contributed to informing our Senators that a change was needed in SB 19-238, Many individuals negotiated with SEIU, called other CCDC members, and /or showed up at the capitol for the hearing in the Senate Health and Human Services Committee.
Building power as a community of people with disabilities and family members requires all of us to do many small tasks. Calling, writing legislators, showing up for legislative committees, going to stakeholder meetings, talking to friends and family members about disability rights. Each activity may appear too small to make a difference. When we each complete small tasks we move the arc closer toward justice. Justice which will free ourselves and others to contribute to our communities and to build a more equitable State with supports and services for Coloradans who have disabilities.
Thank you to each CCDC member who contributed to nudging the arc of the universe toward justice.
If you are an RTD Access-a-Ride user or plan to be, RTD may provide a reasonable accommodation for persons with hearing loss. The accommodation would allow user to use an email to make or change Access-a-Ride reservations.
For more information please visit RTD website at http://www.rtd-denver.com/accessARide.shtml
Click “Accessibility Services”
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Letters to the Editor | April 23, 2019
I direct a small nonprofit with not a penny extra, and I am in full support of House Bill 188, the FAMLI Act.
This law would give employees partial pay replacement during a personal or family medical situation. We have covered the full salary for our employees on medical leave. Is it hard when someone is off for an extended period of time? Of course, but staff pitch in and help because they know that when they need the coverage, their peers will step in for them. As a result, we have loyal employees who are able to really focus on the job when they are at work. FAMLI insurance will cost us less because employers and employees will pay the small premiums with a 40-60.
Our employees do not abuse this; they are eager to get back to work. Donors rightly expect a high level of accountability, and we take that very seriously. When we make the decisions to pay people while on leave, we do so because it is good business, not because it is “nice.” However, shouldering the entire cost is hard for us as a nonprofit. The FAMLI Act would help tremendously.
In summary, as a nonprofit employer with 30-years post-graduate experience, I can say with confidence that FAMLI is good for Colorado nonprofit organizations.
Executive director, Colorado Cross-Disability Coalition
Original Article: Nonprofits would benefit from FAMLI Act
If you follow the news or talk to your neighbors, you know Colorado is in the midst of an affordable-housing crisis. The health and well-being of individual Colorado families is at risk as the cost of housing forces them to live in unhealthy homes, prevents them from having a stable place to live, and consumes so much of their income that they cannot afford other necessities or save money for an emergency. Hundreds of thousands of Coloradans are spending more than half their income on housing — a situation that puts them at risk of homelessness.
Colorado Center on Law and Policy began an effort to inject significant new funding into the budget for affordable housing in 2015. Yet, despite growing concerns, the legislature has only provided small amounts of funding for targeted high-cost populations such as people with mental illness and people leaving the criminal justice system. The legislature has not made a meaningful investment that would address the needs of the 275,000 ordinary Colorado households that are spending more than half of their income on rent.
For the fourth time in as many years, state legislators will have an opportunity to consider a bill that will help relieve the housing crisis without increasing taxes or redirecting funds from other priorities.
Developed by CCLP, House Bill 1322 would invest $30 million a year for three years in the Housing Development Grant Fund. That Fund provides grants and loans for a range of needs, including acquisition, renovation and construction of affordable housing, down-payment assistance, mobile home repair and rental assistance for a range of populations.
If HB 1322 is passed, Colorado Division of Housing would consult with stakeholders from urban and rural communities so that the funds address a variety of needs throughout the state. The legislation reflects input of stakeholders from urban and rural areas, convened by Democrats and Republicans in the House and the Senate.
HB 1322 doesn’t rely on taxpayer dollars or tap into the state budget. Funding will come from the unclaimed property trust fund. This fund holds dormant bank accounts, securities and life insurance proceeds and other abandoned property. While Colorado’s state treasurer makes a tremendous effort to find the owners of these abandoned accounts, hundreds of millions of dollars in the fund remain unclaimed. HB 1322 would put a fraction of that money to good use solving an urgent problem: the lack of affordable housing.
Sponsored by Rep. Dylan Roberts, Sen. Dominick Moreno and Sen. Don Coram, HB 1322 has been endorsed by the Urban Land Conservancy, Enterprise Community Partners, Colorado Municipal League, Colorado Counties, Inc., League of Women Voters, Tourism Industry Association of Colorado, Colorado Hotel and Lodging Association, Housing Colorado, Colorado Apartment Association, Colorado Coalition for the Homeless, Commissioners and Counties Acting Together, Habitat for Humanity Colorado, Interfaith Alliance, Boulder Housing Partners, Colorado Cross-Disability Coalition, city of Boulder, The Denver Foundation, Center for Health Progress, Colorado Senior Lobby, Colorado Bankers Association, 9to5, Denver Metro Fair Housing Center, Together Colorado, The Arc of Colorado, Denver Metro Fair Housing Center, Together Colorado and Wells Fargo Bank.
Legislators should also pass House Bill 1245. Sponsored by Rep. Mike Weissman, and Sens. Julie Gonzales and Mike Foote, this legislation would increase funding for affordable housing by limiting the amount of sales tax revenue Colorado’s largest retailers can keep as their “fee” for collecting the tax. The additional revenue would be transferred to the same housing fund within the Department of Local Affairs, and also would be used to preserve or expand the supply of affordable housing in Colorado. HB 1245 would provide roughly $23 million for housing in the first year and $45 million to $50 million per year thereafter.
Both HB 1322 and HB 1245 will help us begin to address the lack of affordable housing in targeted and creative ways without affecting taxpayers or other funding priorities. Both measures deserve support. Together, these bills could help thousands of Coloradans better afford a home so they can devote more of their hard-earned money to other essential needs.
Claire Levy is executive director of Colorado Center on Law and Policy, a nonprofit, nonpartisan organization that researches, develops and advocates for policies that improve family economic security and health care for all Coloradans.
Original Article: A couple of bills to boost affordable housing — without a tax hike