Alerts about current issues.
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.
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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.
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.
Special Education Opportunity Scholarship
The bill creates a Colorado Special Education Opportunity Scholarship Program to provide scholarships to parents of eligible students with multiple disabilities to use in purchasing services from an education provider or other educational services as selected by the parent.
Although this bill uses the word scholarship it is essentially a voucher program. Students cannot be enrolled in their public school and the student must be identified as having a multiple disability in order to be eligible for this money. Students would be exempt from the compulsory attendance requirement by maintaining eligibility as a student enrolled in a private school or a nonpublic home based educational program. The scholarship or voucher would be used for an approved private school or an approved private online program. Parents could also use the money for materials and tutoring services, academic enrichment services and approved providers such as Speech and Language, Physical Therapist, Occupational Therapist, Behavioral Therapist, etc. The amount the eligible student receives in scholarship is the amount of the statewide per pupil revenues plus the amount of per pupil special education funding. This scholarship would be administered by a scholarship facilitator and would be paid from the money deposited into the student’s account. The State Board would contract with a scholarship facilitator and they would be paid up to 10 percent of the amount of money the student receives in scholarship.
Students that opt out of public school education often will return to public schools with greater gaps in achievement. Finding qualified instructors or therapists for students with multiple disabilities can be challenging. Parents and school districts need to work together in resolving their differences in order for students to receive appropriate instruction and services. Hopefully, districts will not see this scholarship program as a way for students with multiple disabilities to withdraw from public schools and be served at home or in private schools, when conflict arises.
The amount of money is estimated for a state average PPR of $8,450.45.
The Exceptional Children in Education Act (ECEA) funding is a part of that calculation. The preliminary/estimated Tier A ECEA funding is $1,250.oo per student and the average Tier B ECEA funding is $1,888.00 per student. The Scholarship Facilitator would take up to 10% of the total amount for administration and monitoring. If you look at the responsibilities of the Scholarship Facilitator and the amount they would get paid, I am not sure they would be fairly compensated by the 10% of the scholarship amount. Parents would not have a lot of money to contract with approved providers, buy materials and supplies. Providing a private school education for a student with multiple disabilities would cost more than the scholarship will provide.
This bill would put a burden on families of students with multiple disabilities especially in families where both parents are working. Researching needs of students and appropriate approved providers would be time consuming. Students who were homeschooled would miss out on the social aspect of going to school and learning to live in the community.
Another area of concern would be transitioning students, 18 to 21 years of age from school to the community. Public Schools have transition services in place and have built relationships in the community to assist students with employment and training.
While the Opioid crisis is a serious problem, some of the policies have gone too far and have caused people with serious pain to lose access to needed medications and even to their physicians. There are legitimate uses for pain medication. A group of pain patients and their supporters will be holding a rally to implore legislators to be more thoughtful and to clarify the existing laws and regulations. Colorado Law actually was supposed to exempt chronic pain patients from rigid limits. There are ways to manage pain medication to mitigate abuse of such medications. Forcing everyone to taper off of these medications is not the answer.
Please plan to attend this rally on JANUARY 29TH 2019 at 10:30 am at the Capitol. A flyer is attached,
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.
CCDC wishes congratulations to our new Governor Jared Polis and looks forward to working with this new administration. Our expectations of a new governor are clear and doable. We look forward to advancing the rights of people with disabilities so that we can show our capabilities as full citizens. This means a dramatic increase in the number of people with disabilities who are employed. This means a dramatic improvement in the high school graduation of students with disabilities and making sure that students go to college or some sort of vocational program. This means a government that values people with disabilities by having high expectations and providing appropriate supports. This means a government that involves us at every level…on boards, commissions, as employees in state agencies, and on the transition team. Governor-Elect Polis stated last night that his administration will be inclusive. We expect to be part of this inclusion and to have disability representation in historic proportions and stand ready to help make that happen.
CCDC congratulates all of the representatives and senators that won their seats as well and we look forward to working with all of you on these same goals.
We will be solidifying legislative priorities for the next two years soon but among them will surely be:
1) Increasing protection for renters such as statewide source of income discrimination protection and habitability laws.
2) Extending the Mediciad Buy-In for Working Adults with Disabilities to people over the age of 65 and for more than 10 days in between jobs, even if we have to use state funds. With the federal government giving the states carte blanche we should be able to get approval.
3) Getting safety protections for people living in host homes.
4) Consumer direction for all HCBS services.
5) Improving our case management systems, especially transition from institutions.
We will be focusing on money for solid transportation that has a focus on transit and affordable housing that is inclusive of everyone including those with very low income. We will be working on increased accountability around behavioral health and overall health care in the Medicaid program.
On a federal level with the Democrats having a majority in the house, we will be holding Congresswoman DeGette accountable for her promises to us to fix the Electronic Visit Verification mess and exempt consumer direction and family caregivers. We will also expect help with improved access to quality complex rehab equipment (power wheelchairs) including accountability for repairs.
While Colorado definitely went blue, this does not mean that CCDC will stop working with our Republican allies. We have always been and always will be a bipartisan organization. Our issues cross both parties. Disability does not discriminate.
CCDC was very proud of the VERY STRONG voter turnout in the disability community. Approximately 90% of our members had already voted before Monday and we are sure the rest voted Monday or Tuesday. Voting is the first step of realizing NOTHING ABOUT US WITHOUT US.
The public charge rule will discriminate against immigrants with disabilities and their families trying to enter the U.S. (get a visa) or get a green card (become a permanent resident). In collaboration with the disability community, Protecting Immigrant Families will focus this week on Health, Aging, and Disability in the broader campaign to unite public opposition and stop this rule. We have a lot of resources to help you learn more about the rule, spread the word, and (most importantly) submit comments:
It is critical that the disability community speaks out against this devastating rule before the public comment period closes on December 10th.
Telling it like it is about living with the disability. Stop thinking there is something wrong with us, and start thinking you are us. So do something about it! Great story in the Huffington Post.