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.
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.
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TO: Members of the Senate Judiciary Committee
FROM: Julie Reiskin, Executive Director, Colorado Cross-Disability Coalition
RE: HB19-1225 and SB 19-191
I am writing on behalf of the Colorado Cross-Disability Coalition (CCDC) to ask for your support of HB19-1225 and SB 19-191. CCDC is Colorado’s largest disability-led membership organization. Our mission is to advocate for social justice on behalf of people with all types of disabilities (cross-disability).
CCDC strongly believes and states in our strategic plan that people with disabilities must have both rights and responsibilities. Much of policy work is geared towards creating systems that enable people to engage in the full responsibilities of citizenship. We have made great strides in Colorado, but have a long way to go. Because of the many systemic injustices and barriers faced by people with disabilities, our community is disproportionately affected by poverty, lack of education, and unemployment. These systemic barriers are reversing, but very slowly.
One example is that since 2014 we have had the ability to buy into Medicaid while still being able to engage in competitive employment, and earn and save money. Since having this option the percentage of people with disabilities working full-time and full-year increased from 26-29% (as of 2017 the last year with available data). Therefore we still have more than 70% of people with disabilities are NOT employed full time and full year. Those not able to take advantage of this great program, or those still scarred by years or even decades of being told that work is impossible and savings constitutes some sort of fraud remain in poverty and often are reliant on programs that do not allow them to ever accumulate more than $2000 in all assets combined in any one month. If someone gets an SSDI check of $1200 this means that they could never have more than $800 in the bank.
Because of systemic discrimination, people with disabilities are dramatically overrepresented at every stage in the criminal justice system. Jail is no exception. People in jail are 4 times more likely to have disabilities than people in the general population, and more than half of people in jail have psychiatric disabilities. The injustice of these disparities are heightened in the pretrial conext, where presumptively innocent people may have their lives derailed from pretrial detention for a crime they did not commit or which is so minor that they would never even receive jail as s sentence. I share this to explain why HB 19-1225 and SB 19-191 is so important for people with disabilities.
When someone is detained pending trial a plethora of other problems can occur that are exacerbated by living with a disability.
In some housing situations, particularly assisted living, if one is gone more than a limited number of days one can lose their place. Then the person is not only facing criminal charges, but is now experiencing homelessness. Replacement housing for low-income people with disabilities is very unlikely..especially if there is some sort of criminal record.
Many people with disabilities are living in deep poverty. There is no extra money and they balance every month trying to manage. Fees involved in the criminal justice system add up quickly and if they pay, this is likely to cause the individual to not pay rent, utilities or other bills. Often they will give up services such as their phone, which then removes all of their data, reminder systems, etc. They then are not able to be reached and often get in more trouble for missing deadlines and appearance dates. For people unable to physically write, or those with cognitive disabilities who may have been trained using specialized apps to manage information are particularly hard hit. Finally, people often skimp on food and eat what is cheap, which causes secondary health issues OR they are forced to skip psychiatric medication because they do not have food to take with the meds.
Often when people are kept in jail too long due to problems releasing people after they have posted bond people have other problems. They miss scheduled medications, people who use oxygen may run out. Some people may require oxygen only at night but if they are kept in jail overnight a medical visit is required before the jail can provide oxygen if the individual has none. People in supervised living situations have curfews. Sometimes people are released so late that there is no public transportation. Because jails cannot give family or friends a specific (or even approximate) time, arranging for transportation home is a problem.
Unfortunately, poor people often have many debts. Once someone is involved with the criminal justice system they start incurring fees and fines. This can include fees for taking “classes”, fines for missing said classes, fees for “therapy” groups, and various other charges. When one is again arrested, any fees applied to the new bond should not be taken to address anything else.
HB1225 and SB191 are both smartly aimed at safely and smartly decreasing our pretrial population, in which people with disabilities are hugely overrepresented. Our support of this bill in no way implies that we think people with disabilities should not be held accountable if they commit a crime. What we do want, is a system that will have the punishment be proportional to the crime. Too often we see people with punishments that far exceed the crime. People with disabilities who are arrested should have to answer for their crimes (if they actually committed the crime) but that process should not cause someone to forever lose their housing, cause severe medical complications, or destabilize the person completely.
We believe HB19-1225 and SB 19-191 will help make justice more just in Colorado for the community that we represent and request your support.
Feb. 27, 2019
Carrie Ann Lucas, who championed people, especially parents, with disabilities and won a major lawsuit to make Kmart more accessible, died on Sunday in Loveland, Colo. She was 47.
Her sister, Courtney Lucas, said the cause was complications of septic shock.
Ms. Lucas, who lived with a rare form of muscular dystrophy for three decades, was an effective advocate for people with disabilities. A lawyer, she successfully forced several businesses to make their premises more accessible in accordance with the Americans With Disabilities Act.
And last year, through her forceful lobbying, she helped change Colorado law to ensure that the disability of a parent or potential guardian could not be the sole basis for denying custody, adoption, foster care or guardianship of a child.
The legislation grew out of her own struggle to adopt her niece, who was in foster care. Ms. Lucas, who used a power wheelchair, breathed through a ventilator, had low vision and minimal hearing, and relied on a feeding tube, went on to adopt a total of four children, all with disabilities.
“We hear things all the time like, ‘How can you be a parent if you can’t throw a football for your son?’ ” she told The Colorado Independent in 2016.
“As disabled people,” she said, “we are always addressing the issue of how society devalues our lives and experiences.”
On Monday, members of both the House and Senate of the Colorado legislature paid tribute to Ms. Lucas and held a moment of silence in her honor. “Carrie Ann Lucas is a testament to doing everything that you can with what you’ve got,” State Senator Julie Gonzales said.
Ms. Lucas’s commitment was evident in her relentless campaign against a measure to allow doctor-assisted suicide (sometimes called “right to die” or “death with dignity”) in Colorado. An active member of the disability rights group Not Dead Yet, she appeared at numerous forums to express her outrage at what she saw as the implicit suggestion that people with disabilities had such a low quality of life that their lives were not worth living.
Despite her protestations, voters approved the measure in 2016. Doctor-assisted death is now legal in seven states and the District of Columbia.
It was a rare defeat in a long career of advocacy. Perhaps her most notable legal victory came in a class-action lawsuit against Kmart, to make its stores more accessible.
Ms. Lucas was the lead plaintiff in that suit, filed in 1999, and in a settlement in 2006, Kmart agreed to pay $13 million in damages to shoppers — the largest payout in a disabilities case at the time — and to bring its 1,400 stores into compliance with the Americans With Disabilities Act. Kmart agreed to spend as much as $70 million over eight years to do so.
Carrie Ann Lucas was born on Nov. 18, 1971, in Twentynine Palms, Calif. Her mother, LaVerne (Rupert) Lucas, was a sales manager; her father, Philip Emory Lucas, served in the Marine Corps for 20 years and was stationed at the base there. When he retired, the family moved to Windsor, Colo., where he was an appliance repair technician.
Carrie Ann graduated from high school in Windsor and went to Whitworth University in Spokane, Wash., graduating in 1994 with a double major in education and sports medicine.
While in high school, she began to lose muscle strength, and by age 17 she was walking with braces. She was in a wheelchair by her early 20s.
Still, she went overseas. She taught middle school science for two years in Saipan, part of the Northern Marianas in the Western Pacific. Her goal was to become a minister, and when she returned to Colorado she earned a master of divinity degree at Iliff School of Theology in Denver in 1999.
As her health deteriorated, her sister said, she became involved with the Colorado Cross-Disability Coalition, which works for equal rights for people with any kind of disability. She investigated and monitored disability rights cases there.
At the same time, she sought to adopt her niece, Heather, then 9, the disabled daughter of her half brother, Eric Gover, whose family, in Tennessee, was unable to care for her. But because of her own disabilities, Ms. Lucas ran into resistance.
She fought the system and, with the help of a court-appointed special advocate, was able to adopt Heather. The experience inspired her to make sure that the same thing would not happen in Colorado.
Driven by the prejudice she saw against parents with disabilities, Ms. Lucas enrolled at the Sturm College of Law at the University of Denver, where she received a full scholarship. She graduated in 2005 and went on to adopt three more children, Asiza, Adrianne and Anthony, all of whom have disabilities.
Ms. Lucas was executive director of Disabled Parents Rights and served on the board of directors of the American Civil Liberties Union of Colorado. In 2017, she ran unsuccessfully for a seat on the Windsor City Council.
She was among several people with disabilities who were arrested in 2017 on charges of trespassing after a 58-hour sit-in at the Denver office of Senator Cory Gardner. They were protesting the Republican plan to repeal the Affordable Care Act, which would have reduced Medicaid funding and eliminated services that make it possible for people with disabilities to live independently.
In addition to her sister, her half brother and her children, Ms. Lucas is survived by her parents and her partner, Dr. Kimberley Jackson. Her half sister, Kelli Mann, died in 2017.
For the last several years, Ms. Lucas had been writing a blog, DisabilityPride.com, which provided an unvarnished view of her life.
One of her final entries, the day after Christmas, described her fear of what would happen to her children, now in their late teens and 20s, when she was gone. She said she hoped that she had given them “the tools to thrive if given appropriate supports.” But, she added, she was terrified that they would be separated and lose contact with one another.
“My kids are all adopted and lost their first family,” she wrote. “I desperately don’t want them to lose this family too.”
To Read the Original Article: https://www.nytimes.com/2019/02/27/obituaries/carrie-ann-lucas-dead.html
The disability community lost one of it’s fiercest advocates on 2/24/19. Carrie Ann Lucas, a disability rights attorney who pioneered representation for parents with disabilities, died after an arbitrary denial from an insurance company caused a plethora of health problems, exacerbating her disabilities and eventually leading to her premature death. She was 47 years old.
Carrie Ann Lucas is known around the state and the country for her strong advocacy.
Carrie Ann grew up in Windsor, Colorado and had several careers including being a teacher, ordained minister and legal assistant before becoming an attorney. Carrie graduated from Whitworth College in 1994, traveled and taught in Saipan, and then returned to the states to attend the Iliff School of Theology. She received a Master’s of Divinity with Justice and Peace Concentration from Iliff in 1999, but during her time there, became increasingly involved in disability advocacy. After she graduated, she started working as an advocate and later legal assistant for the Colorado Cross-Disability Coalition, investigating, preparing, and monitoring disability rights cases and providing informal advocacy on a wide range of topics. While there, she was granted a full scholarship as a Chancellor’s Scholar at the University of Denver School of Law.
Following her graduation from law school in 2005, she was awarded a prestigious Equal Justice Works fellowship to create a program to combat discrimination that impacts parenting for parents with disabilities. This program, initially started within the Colorado Cross-Disability Coalition, spun off to be Disabled Parents Rights, one of the only organizations in the country devoted to this issue. She also became a national expert and trainer on the rights of parents with disabilities and, through her legal advocacy, secured decisions upholding and promoting those rights here in Colorado. Most recently she was recruited by the Colorado Office of Respondent Parents Counsel to help set up a program to train other lawyers around the state to replicate the sort of impact she was making.
In addition to these professional activities, Ms. Lucas was an advocate with the disability rights groups ADAPT and Not Dead Yet, speaking, teaching, writing, testifying, and protesting on disability justice and the rights of people with disabilities to healthcare and respect. She was also a talented photographer and cook. Carrie Ann was an activist at heart. She graduated from EMERGE, ran for Windsor City Council in 2017, and was planning on additional political activity. She was chair of Colorado Democrats with Disabilities for the past several years. She was a member of the ADAPT group that protested in Cory Gardner’s office and got arrested to help save the Affordable Care Act in 2017, particularly Medicaid. She served on the Board of Directors of the American Civil Liberties Union of Colorado. She was active with Not Dead Yet and fought hard against physician assisted suicide and the notion that life with a disability is not worth living. She demonstrated every day how amazing life with a disability can be. She was given the Intersectionality Award from The Civil Rights Education and Enforcement Center in 2016. She was a leader in passing HB 18-1104 which changed Colorado law to make sure that disability was no longer a reason to remove a child from a parental home. There is much, much more.
Carrie became a lawyer to practice family law after lived experience of discrimination against parents with disabilities firsthand. In 1998 fostered and later adopted her oldest daughter, Heather Lucas. Heather has significant developmental disabilities and was languishing in another state. She fostered and was preparing to adopt a second child, but that was disrupted due to prejudice against parents with disabilities. Where most people might be upset and feel helpless, Carrie Ann was furious and went to law school to represent parents with disabilities.
Carrie adopted three more children over the years, Adrianne Lucas, Azisa Lucas and Anthony Lucas. All of her accomplishments centered on her dedication to her children and her role as a mother. All of her children have significant disabilities and Carrie Ann always made sure that they were not only educated and included in their communities, but that they were loved, respected, and supported in their individual hopes and dreams.
Carrie had a severe neuromuscular disease, a rare form of muscular dystrophy. She relied on a power wheelchair, and had used a ventilator for years. However, her death was premature and caused by inappropriate and brutal cost containment procedures of an insurance company. Because Carrie Ann worked for the state, she had use state insurance which was primary ahead of her Medicare and Medicaid. In January of 2018 she got a cold which turned into a trach and lung infection. Her insurance company UnitedHealthcare, refused to pay for the one specific inhaled antibiotic that she really needed. She had to take a less effective drug and had a bad reaction to that drug. This created a cascade of problems, loss of function (including her speech). United Healthcare’s attempt to save $2,000 cost over $1 million in health care costs over the past year. This includes numerous hospitalizations, always involving the Intensive Care Unit which is par for the course for ventilator users.
Carrie Ann had hoped to spend a lot of time in 2019 using her tragedy to work to fix our broken health care system. Her blog www.disabilitypride.com provides more details. For all intents and purposes a shero of our community was murdered in the name of cost containment. This is why we MUST fight these measures with all we have. Insurance companies and government programs must not be allowed to deny people what they need. Just last month she was having to ration her insulin for her type 1 diabetes because of the same insurance company and how impossible it is to work between private insurance and Medicare and Medicaid. This is a great example of why people with disabilities should not be forced into insurance or health plans and why we need Medicaid as the primary health delivery system for this country.
In addition to her four children, Carrie Ann is survived by her sister Courtney Lucas, her parents Lee and Phil Lucas, her nephews Gavin and CJ Lucas, Gavin’s wife Kathleen and their daughter Emily. She is also survived by her partner Dr. Kimberley Jackson, a CCDC Board member and activist in the disability community. She will be missed by a wide circle of friends and colleagues throughout the country.