Sexuality Education Shorts offer accessible and inclusive information for both Parents and Self-Advocates on healthy bodies and relationships in under 10 minutes.

Gender Identity and Expression helps explain what gender is and how we can express how we feel inside. We will talk about how gender is different from sex and sexuality, the different gender identities you can choose, and how pronouns help us share who we are.

También puedes ver esta presentación en español.

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Los cortos educativos sobre sexualidad ofrecen información accesible e inclusiva para padres y autogestores sobre cuerpos y relaciones saludables en menos de 10 minutos.

Identidad y expresión de género ayuda a explicar qué es el género y cómo podemos expresar cómo nos sentimos por dentro. Hablaremos sobre cómo el género es diferente del sexo y la sexualidad, las diferentes identidades de género entre las que puede elegir y cómo los pronombres nos ayudan a compartir quiénes somos.

You can also view this presentation in English.

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Colorado’s 2022 legislative session came to a close on May 11th. In a year where continued COVID recovery and an upcoming midterm election loomed, legislators across the aisle came together and championed efforts to advance inclusion, options, and services for individuals with disabilities. Thanks to the exhaustive work of self-advocates, families, community advocates and policymakers alike, five key bills made their way to the governor’s desk and will be highlighted below. 

These summaries are not exhaustive.

For the full content of each bill, please visit: http://leg.colorado.gov/bills. 

House Bill 22-1376: Supportive Learning Environments for K-12 Students

In an effort to increase transparency and address the emotional and physical wellbeing of students, HB22-1376 aims to improve policies and data collection in relation to issues including chronic absenteeism, suspensions, expulsions, referrals to law enforcement, and perhaps most importantly for students with disabilities, the use of physical restraint (including handcuffing) and seclusion. The Colorado Department of Education will be required to compile and accessibly share data annually while maintaining student privacy standards. Colorado’s Peace Officers Standards and Training (POST) Board will develop and distribute a model policy for the hiring, training, and evaluation of School Resource Officers (SROs).

HB22-1376 also provides updated definitions, new provisions, and protections regarding restraint and seclusion including that:

• The Colorado Department of Education has the authority to enforce complaint decisions regarding the improper use of restraint and/or seclusion. 
• Schools must provide written notice to parents and guardians for physical restraints lasting for more than a minute (see full bill text for specific reporting requirements and timeline for implementation).
• Seclusion rooms must include either a window, or video camera if a window is not feasible, to facilitate continual monitoring.
• Seclusion rooms must be safe spaces and not otherwise used for storage, custodial, or office space.

Representative Mary Young (D) – “Thanks to AdvocacyDenver, the Arc of Colorado, Stand for Children and the Children’s Campaign for all of their work that led to the successful passing of HB22-1376. Schools play a crucial role in fostering safety, connectedness, and healthy conditions for students’ learning and development. HB22-1376 will make data about students’ experiences at school more transparent and ensure that students receive targeted support and learn in an environment that is positive, safe, and inclusive. This bill lays a foundation for understanding our learning environments across the state and will provide actionable information to improve the student and educator experience.”

House Bill 22-1107: Inclusive Higher Education Opportunities

In 2016 Colorado legislature established a 5-year pilot for three colleges and universities to run inclusive higher education programs for students with intellectual and developmental disabilities (IDD). Programs focus on four key areas: academic growth, social development, independence, and career advancement. As of 2022, 70 students with IDD have enrolled in these programs where they participate in traditional courses, live on campus, and work towards future career goals. Students who complete their respective program earn a Comprehensive Higher Education Certificate rather than a traditional diploma.

HB22-1107 authorizes a grant program where schools across the state can apply for funding to establish, or expand existing, inclusive higher education opportunities. It requires that the administering entity awards grants to maximize “access and opportunity for all students regardless of demographic or geographic diversity.” The bill also provides for reporting and evaluation of the long-term outcomes of those funded programs and the students who participate.

Representative Mary Bradfield (R) – “As a retired teacher I was happy to support this legislation that expands access to higher education for all learners in Colorado. A good education and the future doors it opens are crucial to the success of our youth.  I’m proud to see these opportunities being given our students with intellectual and developmental disabilities.” 

House Bill 22-1114: Transportation Services for Medicaid Waiver Recipients

Access to reliable, affordable transportation is a major barrier for many individuals with disabilities when trying to reach vital services, employment, and their communities at-large. For those who rely on transportation services available under a Medicaid home- and community-based waiver the options are limited and “often inefficient and overburdened.” 

HB22-1114 seeks to expand the available options for Medicaid waiver recipients by authorizing and reimbursing transportation network companies such as Uber and Lyft to provide nonmedical transportation. This authorization will occur no later than July 2024 after a state reporting process to identify a reimbursement system, compliance with federal law and waiver requirements, and best practices.

Representative Alex Valdez (D) – “HB22-1114 improves the lives of people with intellectual and developmental disabilities by eliminating barriers when it comes to choices in transportation. Many adults with disabilities lack sufficient access to reliable, accessible, and safe modes of public and private transportation. This bill addresses these barriers by offering the same choices in transportation that are already available to people without IDD.  Covering private transportation under certain Medicaid waiver services will allow people with IDD to participate more fully in their communities, employment, recreation, and relationships.”

House Bill 22-1320: Achieving A Better Life Experience Savings Account

Income and asset limits for assistance programs like Supplemental Security Income (SSI) and Medicaid have significantly hindered individuals with disabilities’ ability to save money, make large purchases, and plan for the future. Since 2017, Coloradoans who were determined disabled before the age of 26 have had access to tax-free Achieving a Better Life Experience (ABLE) accounts that allow an individual and their families to save and invest without losing eligibility for those needs-based benefits.  

HB22-1320 makes three major modifications to the existing law that improves accessibility and benefits for those who are eligible:

• A person other than the account owner (such as a family member or other support) can establish and administer an account on behalf of the individual with a disability.
• As of January 2023, accounts will be protected from “Medicaid claw-backs”, or the practice of the state claiming and retrieving funds for reimbursement of Medicaid expenses upon a beneficiary’s death.
• Contributions made to an ABLE account may be deducted when determining state taxable income.

Representative Colin Larson (R) – “I was honored to work with Rep. Cathy Kipp and Senators Zenzinger and Woodward on this bipartisan bill.  It is a historic step forward for providing financial stability, certainty, and independence for thousands of  individuals with disabilities and their families. By bringing tax deductibility to and ending the claw-back provisions for 529 ABLE accounts, Coloradoans with disabilities can now earn and save without fear of losing the services they rely on.”

House Bill 22-1303: Increase Residential Behavioral Health Beds

Ensuring appropriate care for the mental and behavioral health needs of all Coloradoans has been an issue for the state both prior to and compounded by the COVID-10 pandemic. Lack of available beds in treatment facilities has left many, including those with a dual diagnosis and those awaiting competency restoration, without access to critical stabilization and longer-term care.   

HB22-1303 appropriates nearly $42 million in federal funds received by the state through the American Rescue Plan Act for renovations and the creation of at least 16 additional inpatient beds at the Fort Logan mental health institute and at least 125 additional beds at residential facilities across the state. Beds at Fort Logan must first be used to address the backlog of those awaiting competency services before accepting civil patients. Residential facility beds are prioritized for those with severe mental illness or co-occurring diagnoses.

Statute includes additional provisions such as:

• Minimum standards for services at mental health residential facilities including assistance with medication and activities of daily living, case management services, life skills trainings, and non-medical transportation.
• Future establishment of admissions criteria, discharge planning, quality assurance monitoring, and federal compliance for mental health residential facilities.
• Licensing entities and timelines, including that aa of July 1, 2023, the Behavioral Health Administration will be responsible for licensing of those facilities.

Senator Jim Smallwood (R) – “HB22-1303 is critically important, bi-partisan legislation that should make real progress statewide helping adults with urgent behavioral health needs who need long-term services and support. We have heard from citizens and law enforcement for years about the lack of facilities to provide integrated care to these populations and specifically, individuals awaiting competency restoration services.”

Additional Successes to Celebrate

• Senate Bill 22-127 appropriates $80 million to the Department of Education for special education programs across the state. The bill provides an increased per-student distribution of $1,750 and requires that amount to increase by the rate of inflation each budget year beginning in 2024.
• Key language in the amendments of House Bill 22-1278 (creation of the Behavioral Health Administration) ensures that people with co-occurring IDD and mental health diagnoses are not turned away from services due to their primary diagnosis or need for assistance with activities of daily living.

Kaley Day is an Advocate for Adults with AdvocacyDenver.

She is a graduate of the University of Denver, and a sibling to a young man with disabilities. Kaley publishes Policy Perspective featuring interviews with state policymakers and community members on issues that affect the work and mission of AdvocacyDenver.

For questions or comments, contact Kaley at kday@advocacydenver.org

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Affordable housing in Denver—a seemingly contradictory statement and an issue that, at the very least, causes headaches for those trying to navigate it, and at worst leads to homelessness and displacement for our most vulnerable community members. Denver’s housing market is among the fastest growing in the country, and that growth leaves behind thousands of people with intellectual and developmental disabilities (I/DD) who are unable to keep up with rising costs and lack of inclusivity and accessibility.

In 2020 Denver Human Services’ Intellectual and Developmental Disabilities Equitable Access to Services (IDDEAS) program Advisory Council, a group of community members that makes recommendations regarding the use of DHS Mill Levy funds, forwarded a recommendation regarding equitable housing access for the I/DD community in Denver. DHS then joined a community-led effort, with invitation from Laradon, to pursue the creation of the Inclusive Housing Denver report. Ten community organizations contributed to the design and generation of the final report as the process was facilitated by Neuro-Inclusive Housing Solutions and Autism Housing Network. Findings were compiled through a combination of data and market analysis, focus groups with members of the I/DD community and their families, and a cross-sector community leader workshop. The 53-page report was released in November 2021.

Report Highlights

Aging Caregivers  “73% of Colorado residents with I/DD live with and are supported by a family member…” Many of these households are led by aging caregivers who, currently and in coming years, may not be able to maintain their home and level of care for their loved ones. Individuals with I/DD, many who live below federal poverty guidelines, are unlikely to be able to afford the cost of maintaining that housing in the absence of their family member and caregiver. The aging caregiver dilemma is a long-known issue, as highlighted by the 2018 addition of aging caregiver criteria to emergency Long-Term Services and Supports (LTSS) enrollment. This response, while providing a good safety net for those eligible, can also involuntarily displace and limit the options of the individual with I/DD who may be forced to move into a host home or other waiver-provided residential setting during what is already a difficult and emotional transition. 

Invisible Numbers  Individuals with I/DD are an often unrecognized group when it comes to affordable housing discussions and planning. This invisibility grows when taking into account the number of people who are not connected with LTSS and the Medicaid waivers, whether it be due to experiencing homelessness and lack of access to services, or ineligibility under program criteria- the reality for many individuals on the autism spectrum whose IQ places them outside of eligibility thresholds. The report estimates the number of people with I/DD in Denver county to be, conservatively, 2035, with the potential to be over 7778 due to those factors.

Range of Needs  Thirty-two percent of respondents reported needing a moderate level of level of support scattered throughout the day including help with meal planning, paying bills, cleaning, and other activities of daily living. Another 24 percent reported needing 24/7 care, whether through shared staff or 1:1 support. Remaining respondents had lower support needs or require specific care for physical disabilities, medical support, and memory care. It is imperative to consider this range of needs when looking towards future housing initiatives for Denver’s I/DD community. The principle of Universal Design, or the design of environments that can be accessed and used by all people regardless of age, disability, and other factors, can allow “more people to safely age in place in their community.”

Affordability  “The national standard for affordability is that an individual does not spend more than 30% of their total income on housing costs.” Almost all individuals with I/DD are deemed “extremely low income” by The Dept. of Housing and Urban Development standards, and Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) are many’s primary source of income. According to that national affordability standard and current maximum Social Security benefits, individuals with I/DD’s maximum affordable housing cost should not exceed between $252-276 monthly- a rate that is unfathomable in the current Denver housing market.

Community Engagement  Inclusive housing not only addresses affordability and physical accessibility, but provides opportunity to foster and engage in community and social settings. The report highlights two major barriers to community engagement for the I/DD community: lack of access to transportation and lack of friendship and meaningful personal relationships. In order to fully serve the community and its needs, future initiative will need to account for these barriers and seek to create housing that addresses them.

In asking what type of housing individuals hope to live in someday, the report elicited a variety of responses but trends emerged among those responses. Many said they would like to buy or rent their own home (not in a provider-controlled setting as currently available through Medicaid LTSS), in communities designed for, but not exclusive to, individuals with I/DD (“mixed-use neuro-inclusive communities”). Design features such as easy-to-clean environments, pedestrian-oriented planning, transit access, security and smart home features, and space for social gathering rank high and highlight a need to look beyond bare-bones ADA compliance in developing truly inclusive housing. 

Individuals responded favorably to the idea of supportive amenities, services tied to a property rather than one’s eligibility for Medicaid LTSS. These amenities could include on-site staff to help with benefit and resource navigation, free planned events to foster social engagement, help with cleaning and meals, and emergency support. 

In its entirety, Fair Housing Denver’s report identifies many more community needs and preferences, while also addressing the barriers and opportunities that exist in the current market. Overall it underlines a need for Denver, its housing development and I/DD service communities, and resources like the IDDEAS Mill Levy to get both creative and proactive. Families need support to identify options and plan for the future, developers and policymakers need education on community needs and incentive to address those needs, and individuals with I/DD deserve effective, inclusive housing solutions before they are left in crisis. The report can be read in full at https://inclusivehousingdenver.org/.

So what comes next? In light of the report’s findings, the IDDEAS Mill Levy Advisory Council forwarded seven recommendations to Denver Human Services on November 30^th, 2021. The recommendations are as follows (Note that the use of ‘housing’ refers to both renting and home ownership):

• Leverage Mill Levy funds to convert or upgrade already existing properties to tailor towards individuals with I/DD (Mom-and-Pop landlords, multi-unit housing, property managers, family homes, etc.). – High Priority
• Leverage Mill Levy funds to offer more housing vouchers or other funding mechanisms for individuals with I/DD, to encourage housing stability options. – High Priority
• Advocate to the State on issues that are critical to Denver, as they relate to housing (affordability, I/DD specific needs, etc.). – High Priority
• Leverage Mill Levy funds to incentivize builders to create I/DD inclusive housing.
• Investigate and identify landlord and builder concerns with renting and creating housing that is tailored to the I/DD community to inform an outreach and education plan.
• Create a housing and lifespan navigator program to help residents with I/DD understand, plan, and pursue housing options in Denver.
• The council recommends that housing becomes the priority for uncommitted Mill Levy funds.

These recommendations will guide efforts by DHS and the IDDEAS Mill Levy to explore, strengthen, and implement existing and new initiatives to increase housing access for the I/DD community in Denver.  

Housing is a human right for all, and providing inclusive, affordable housing for people with disabilities benefits the entire community. It is our hope these efforts can provide relief and a silver lining to the daunting and discouraging housing crisis for people with disabilities in Denver.

Note: Author of this publication, Kaley Day, is a voting member of the current IDDEAS Mill Levy Advisory Council.

Kaley Day is an Advocate for Adults with AdvocacyDenver.

She is a graduate of the University of Denver, and a sibling to a young man with disabilities. Kaley publishes Policy Perspective featuring interviews with state policymakers and community members on issues that affect the work and mission of AdvocacyDenver.

For questions or comments, contact Kaley at kday@advocacydenver.org

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The 2021 Colorado legislative session began with uncertainty. Amid COVID protocols that required distancing and virtual testimony, economic concerns, and fear that any bill with a fiscal note may not make it to the governor’s desk, advocates and community members were unsure how far their efforts to promote legislation for the disability community would go. In the end there was cause for celebration as the session closed officially on June 8th and the state saw major legislation, some years and decades in the making, passed in order to support and advance the rights of Coloradoans with disabilities.

In this issue of the Policy Perspective, we will highlight four priority wins and the legislative champions that made them possible. All legislators highlighted in this issue received an “A” grade from The Arc of Colorado in a groundswell of bi-partisan support. The descriptions are not exhaustive.

For full descriptions of each bill, please visit: http://leg.colorado.gov/bills. 

Senate Bill 21-075: Supported Decision-Making Agreement

Colorado joins 10 other states and the District of Columbia that legally recognize supported decision-making agreements and outline their implementation as a less-restrictive alternative (or supplement) to guardianship. People with disabilities and older adults may voluntarily enter into an agreement with chosen supports who the individual trust to assist with understanding options and consequences, answering questions, communicating the individual’s decisions, and ensuring the execution of those decisions. The act includes protections and limitations such as: 

• Agreements will not override existing authority by a court-appointed guardian, conservator, or power of attorney, and do not create a fiduciary relationship.
• Members of the supportive community are not entitled to compensation for their role. 
• Agreements may not be used as evidence of incapacity of the individual.

With this new option, adults can retain their independence and authority over decisions while also receiving the support they need to lead healthy, safe, and self-determined lives.

Senator Bob Gardner (R) – “As a legislative advocate for people with intellectual and developmental disabilities (I/DD) and a supporter of their rights, I was happy to lead on the voluntary agreement to advance independence and self-determination for people with I/DD. This bill creates a less restrictive approach, which is required to be considered before rights are removed through other legal arrangements. I am happy that older adults and people with disabilities in my district and across the state, have another tool to remain in charge of their own lives.”

Representative Kerry Tipper (D) – “We had a lot of work to do this session and I am particularly proud of this bill. Supported Decision-Making gives people with disabilities the help they need to make choices about their own lives, such as where they want to live; the services, supports, and medical care they want to receive; whom they want to live with; and where they want to work.”

House Bill 21-1166: Behavioral Health Crisis Response Training

A 2014 statewide study revealed significant gaps and barriers for Coloradoans that are dually diagnosed with both an intellectual/developmental disability and a mental health diagnoses, especially in obtaining timely, high-quality, and effective care. This bill directs the Department of Health Care Policy and Financing (HCPF) to obtain a training vendor in order to provide statewide, teleconferenced training on behavioral health crisis response management to case management agencies, mental health centers, and program-approved support providers. The training will reach 20 providers, including 10 additional providers from underserved areas of the state. 

Representative Mary Young (D) – “This bill was introduced in the 2020 session to address the ongoing need to remove significant barriers and bring needed training to communities to help people with I/DD with co-occurring disorders access needed behavioral health case management and crisis response services. The pandemic has increased the already identified need of this community. The need for quality care for individuals in crisis is a statewide issue and thus demands a statewide solution. It was a tremendous pleasure to work with the state, families, advocates, mental health providers, school personnel, and individuals to enhance the safety-net for people with I/DD.By training behavioral health providers to meet the unique behavioral health needs of this population we reduce the likelihood of their involvement in the justice system and jail, in an out of home placements away from their community, or a psychiatric placement.  Prison inmates are 4 times as likely to report cognitive disabilities as the general population and jail inmates six times more likely.  This bill provides essential training to continue to increase mental health parity for individuals with cognitive disabilities.”

Representative Perry Will (R) – “It was a tremendous honor to bring the challenges faced in rural communities to the forefront with this bill. When cross-system responses have been implemented, they have proven to support key outcomes, such as reduced jail admission, access to supportive services, and less system fragmentation.  This bill allows individuals to remain in community settings with their friends, family, and loved ones, rather than using the emergency department, inpatient psychiatric facilities, regional centers, and the State Mental Health Institutes far from home.”

Senate Bill 21-039: Elimination of Subminimum Wage Employment

Federal law has long allowed employers to pay people with disabilities substantially less than the minimum wage if their disability impacts their earning or productivity capacity. Now, 10 employers in Colorado who retain special certificates to pay subminimum wage must develop plans to phase out these models by 2025. The bill also allocates dollars and development toward Medicaid waiver supported employment options to ensure successful transitions and reduce barriers to competitive integrated employment. Under this act, Colorado affirms its position as an Employment First state dedicated to the advancement and economic justice of workers with disabilities across the state.

Senator Rachel Zenzinger (D) – “The inequity of subminimum wage, which dates back to 1938, has finally been addressed. This bill, which I was proud to carry, aligns Colorado with national policy. As Gov. Jared Polis signs this bill into law, countless individuals with a wide range of physical and intellectual disabilities will finally take their rightful place in the workforce, with equal opportunities. By implementing these changes over the course of four years, I believe we will soften any impact on employers, and they will find that this is a law worth supporting. Additionally, the positive impact on the whole community will be significant, as the beneficiaries of the bill become less reliant on public support.”

Senator Dennis Hisey (R) – “I was honored to continue the work. Colorado has declared itself an Employment First state, and this bill promotes competitive, integrated employment for people with disabilities. Research shows that 85% of people with intellectual and developmental disabilities are not employed. Employment opportunities should be available to all people with who wish to explore opportunities to work, regardless of the nature and extent of their disabilities.”

Joint Budget Committee: Developmental Disability Waiver Slots

A significant indent was made to the list of over 3000 individuals across the state on the waitlist for the comprehensive Developmental Disabilities waiver. The Joint Budget Committee allocated enough money to open 667 slots, allowing for individuals and families—some who have waited decades, to finally access vital supports in their community.

Senator Bob Rankin (R)— “I have worked for several years to provide resources and supports in the person’s home and community to help with activities of daily living like bathing, getting dressed, finding and getting to work, and participating in community life. Especially in rural Colorado, these supports are critical to ensuring that people with I/DD can access the services they need to fully participate in the communities of their choice.”

Senator Dominick Moreno (D)— “In a difficult budget year with so many unknowns, I was happy to advance more support and resources for people with I/DD. Unfortunately, despite the intensive level of care needed by people on the waiting list, it continues to grow each year. Many of these individuals have been waiting for more than a decade for the critical supports they need to fully participate in their communities. Each year we chip away at the list and I am honored to support the most vulnerable in our communities yet again this session.”

Kaley Day is an Advocate for Adults with AdvocacyDenver.

She is a graduate of the University of Denver, and a sibling to a young man with disabilities. Kaley publishes Policy Perspective featuring interviews with state policymakers and community members on issues that affect the work and mission of AdvocacyDenver.

For questions or comments, contact Kaley at kday@advocacydenver.org

The post Legislative Wins and a Brighter Future appeared first on AdvocacyDenver.

Nearly one year after COVID-19 changed our world and impacted lives globally, the release of two FDA-approved vaccines has offered hope to many. For Colorado’s intellectual and developmental disability community, the relief offered by the vaccine has become imperative to a population more impacted by social isolation, where the function of essential services and supports has changed, and many live with co-occurring or underlying conditions. In these interviews, AdvocacyDenver seeks to understand the development of Colorado’s vaccine priority schedule, along with the perspective of advocates and family members.

What kind of discussion is taking place in the statewide advocacy community around vaccine distribution?

There is ongoing discussion in terms of priorities and where individuals with intellectual and developmental disabilities, and the larger community of individuals with significant health impairments, fall in line as the vaccine is phased in. All of the Arc chapters have launched awareness campaigns. We want self-advocates, parents and providers to have information, in people-friendly terms, in order to make an informed decision in relation to the vaccine. Several of The Arc Chapters, Community Centered Boards, and other disability groups have volunteered with the state to help with vaccine distributions as resources become more plentiful. This collaboration may potentially help with targeted outreach and assist with getting “shots in arms” by trusted providers with whom people have relationships. Collectively, we are excited about the opportunity; however, timing still remains a question. The Governor’s Medical Advisory Committee, The Colorado National Guard, and the Department of Health Care Policy and Financing will continue dialogue as new information becomes available, as Center for Disease Control (“CDC”) guidance evolves, and as vaccines become more abundant. Together, we have been successful in prioritizing individuals that have difficulty wearing masks and adding Down Syndrome to the priority list.

What are the major areas of concern for advocates looking forward?

In many respects, the plane has taken off and we do not have a flight plan. The flight plan is dependent on so many factors. Vaccine availability is limited and variable week-to-week, the logistics of getting vaccines out given the ultra-cold temperatures required, different systems for signing up, the vast geography of the state, communication and transportation challenges in getting to vaccination sites. The world, and Colorado, has never deployed a vaccination distribution scheme on the scale and scope that we see today. A major challenge is that when the vaccine is offered, some individuals decline the resource. We are all looking forward to a world where the majority of our communities are vaccinated to achieve “herd immunity.” Although specific conditions are called out in the priority schedule, we look forward to a schedule that incorporates settings, the ability or lack of ability to social distance, and a more inclusive definition of Intellectual and Developmental Disability (“I/DD”).

Are there any recommendations being made by advocates in regards to the re-opening of in-person services and client safety?

As the pandemic stretches into the coming months, several changes have been made in the waiver programs to offer one-on-one services in lieu of congregate services. This is a protective factor for many people and the flexibility of providing services are an important change. Social isolation and the challenges associated with limited opportunities are top of mind for advocates statewide.

From the larger community, there seems to be a disconnect in understanding why those with intellectual and developmental disabilities should receive priority in the vaccine schedule. As a parent, can you speak to the importance of that priority for your son in particular?

I have a 17-year-old son; his name is Kennedy. Kennedy has Down syndrome and obstructive sleep apnea. It’s terrifying to think as a parent that he wouldn’t receive highest priority, to think of him in a hospital room with very poor outcomes at a potential greater than the average person in the population. There’s a university of Oxford study that looked at 8 million adults in England and identified that people like my son have four to five times the risk of very severe COVID versus the average person in that population, and also a 10 times greater risk of death. The way they’ve done the priorities they think they’ve captured my son and others, but they haven’t. If you look at “1B.3”, while Down syndrome is listed as a condition, in 1B.3 you have to have two conditions. Well, most people with Down syndrome don’t have cancer. They don’t have kidney disease. They don’t have sickle cell anemia. They don’t have organ transplants. Those are all pretty specific singular conditions, and most people with Down syndrome have a range of conditions that aren’t listed there- from obstructive sleep apnea to respiratory issues and compromised immune systems.

The other thing they try to point to is that people with disabilities have difficulty wearing masks. Well guess what? Most people with intellectual and development disabilities really don’t have difficulty wearing masks. My son doesn’t have difficulty wearing a mask. So as it turns out, Kennedy would be in Phase 2 after me. I’m a relatively healthy 65-year-old who plays tennis and walks, but my son, who’s a greater risk than me is prioritized after me. I would like to see is equity and parity for my son and others. There have been over one million people prioritized. Our population of adults (with intellectual and developmental disabilities) is maybe 10- to 20,000, so over a million have been prioritized, and somehow Kennedy is in Phase 2. Most people with intellectual and developmental disabilities, are in Phase 3. They’re in Phase 3 because they don’t have difficulty wearing masks, they don’t have Down syndrome, and they don’t have the very specific conditions listed in 1B.3 and 1B.2. So while the state thinks they’ve addressed this, they haven’t, and they put people like my son at risk.

How has Kennedy and your family’s life been affected by both the pandemic and its risks, as well as this delay in vaccination and getting back to the community?

Kennedy is extremely social. He’s a hugging machine for one thing, so the only people that he can hug now are people in the house. His ability to get together socially with his friends and schoolmates is drastically limited. If he were 18 his ability to be employed would be greatly impacted. The ability to go out and have birthday parties, go out to Chuck E Cheese and Red Robin, all of that’s been severely impacted. Those are things that are very meaningful in his life. Not the least of which is school, where his typical classmates are hybrid, so he doesn’t get to see them and he has difficulty with remote learning. He’s not contracted COVID, but he’s been in quarantine two or three times because others have.

As a parent, what action would you urge state officials to take in response to these concerns?

They have Down syndrome in 1B.3 and they have “PWD” (people with disabilities) who have difficulty with wearing masks. Just call it “PWD” or call it people with intellectual and developmental disabilities. What is the harm in going the extra distance? Spell out our population who is probably more severely impacted, or as severely impacted as anyone else, to resume more of a normal life. What’s the harm in doing that? It’s a small population. I don’t understand why this is such a struggle with HCPF, CDPHE, and the governor’s office. I don’t understand.

Colorado’s current vaccine distribution schedule is available here

Apart from the addition of Down syndrome to Phase 1B.3, what considerations are being discussed in Governor’s office in regards to the vaccine priority schedule and people with disabilities?

Josh Winkler: As you’ve already seen, things change. The original phasing came out in early January with very limited knowledge of what the Centers for Disease Control (“CDC”) was putting out and how many doses a state would be getting per week. There’s been a couple of revisions since, including about two weeks ago when Down syndrome was added. The 1B.1, 1B.2, and 1B.3 categories were all added, and those were largely based on CDC guidance, and revisions to that guidance, which included Down syndrome in particular as one of the conditions that data has shown has a correlation between mortality and that underlying condition.

All of those conditions [in those categories] are the same. Those are the conditions the CDC has found strong, scientific evidence that there’s a correlation. So at any given time the CDC could upgrade their recommendations. As we get changes on dosing, or another vaccine is approved- all those things could influence when there’s more revisions to the phasing. Nothing is set in stone. There’s a whole team of epidemiologists and doctors that are reviewing all of the information. We are trying to balance out the recommendations from the CDC and the numerous groups that are lobbying for why they think they should be moved higher in the priority, making sure that there’s a prioritization that preserves life and understanding how many doses we have coming into the state. Ideally we vaccinate everybody as quickly as possible, but we still only get about 100,000 doses a week at this point.

In terms of disability, how is that being defined? Is it like the Rehabilitation Act that defines a disability as a physical or mental impairment that significantly limits a major life activity?

Josh Winkler: Unlike a lot of other states, we haven’t gone with that broad of language. Again, it’s been that balance of going specific and calling out the specific things the CDC has identified as underlying conditions, and being broad enough that you’re not missing somebody who has some kind of rare disorder that’s very similar to, but not quite, the exact label. Rather than saying ‘intellectual and developmental disabilities’, for example- that’s not really what the evidence has shown there’s been the correlation of death with. It’s the underlying conditions that many people with I/DD might have. So if somebody has a heart condition and I/DD, they could be in that category because it’s the heart condition that puts them at a higher risk based on the CDC data.

Is there any current or projected data around COVID-19 incidence or cases in Colorado’s community of individuals with disabilities?

Bonnie Silva: We have two pieces of data around COVID that are specific to people with disabilities. Early on, Colorado realized that people with disabilities and older adults residing in congregate settings would be disproportionately impacted by this pandemic, so we immediately began tracking data specific to those settings to understand where the impact was the most significant and how to deploy our resources to mitigate the spread of COVID and to save lives. There’s also the data that HCPF has for people who reside in home- and community-based waivers, so not those in group congregate settings, but in community-based programs. So you would ask, ‘what does that data show us?’ Our data shows that people who reside in high-density group settings are at high risk for poor data outcomes from COVID. We also see that age in the disability population, similar to the non-disability population, is a high correlating factor for death.

First and foremost, hats off to the people of Colorado, because what our data shows is that people with disabilities who received services in Colorado are at a fairly low risk for mortality from COVID. That means they have done a good job with social distancing and adhering to the infection prevention guidelines that are out there. How this community has shown up and our data is not necessarily replicated in other states. I think it’s something that we, as a community, should be very proud of.

When looking at those group settings, by far people in nursing homes have been the most impacted, followed by people who reside in assisted living residences, then followed by group homes serving people with I/DD. More specifically, it’s 23% of the deaths have been from people in nursing homes, followed by 10.7% in assisted living, and 0.1% for the group homes serving people with I/DD. Of course all of those deaths are tragic, but we’ve worked hard to make sure that, on the prevention side, we take this holistic approach. We didn’t separate out a response for a nursing home from a response for people serving I/DD, we provided the same level of support across the board. Group homes are licensed to serve around eight to 10 people, whereas a nursing home might have 200 beds, so there’s a pretty big continuum when talking about group settings. We very intentionally included all of these early on in our holistic response and I think our data supports the outcomes for that.

In which of those three data sets would the state regional centers, for example Wheat Ridge Regional Center, fall?

Bonnie Silva: In the group home category, so that 0.1% group.
In terms of people in the community, the adult waivers serving people with I/DD had the lowest mortality rate when we’re looking at cross-disability population. That rate would increase when we look at, for example, the Elderly, Blind, and Disabled waiver, where we’re serving more older adults than we are in the I/DD waivers. If you’re looking for where the concentrated risk is, it’s the combined factors of disability, age, and setting that was the greatest risk for people.

Josh Winkler: One thing that surprised me on the data was that the general Medicaid population actually saw that deaths were at twice the rate of what they were in the waivers. So of the deaths in the general Medicaid population, twice as many were from COVID as the deaths in any of the waivers. Again, it goes to show how in-home care and people on Home and Community Based (“HCBS”) waivers in Colorado have done a great job of staying home, practicing social distancing, and wearing masks.

Looking at service providers and the future of service provision in the state, what expectations or recommendations are being made to service providers regarding the vaccine?

Bonnie Silva: Colorado made the decision, in terms of priority, to make sure that the direct support professionals providing care to people with disabilities were in that top-tier priority. If they provided care in group homes, they were in Phase 1A. If they provided in-home care to people on waivers, they were in that 1B.1 category. While there’s a lot of hope on the horizon in terms of vaccines finally being deployed, we need to have a good percentage of Colorado vaccinated in order to reach that “herd immunity.”

What we know is that the vaccine doesn’t necessarily stop the spread of COVID. It stops people from dying from COVID if they get it. I imagine for some time, at least at this juncture, that the infection prevention measures we have in place now will need to remain in place- the smaller group delivery of services, wearing masks, hand washing, social distancing- until we have a much larger percentage of the Colorado population vaccinated.

What discussion or planning is in place should a provider or a client refuse the vaccine? Is there an expectation from the state around disclosure from service providers in regards to whether they receive the vaccine or not?

Bonnie Silva: Vaccine confidence has been one of our key strategies that’ we’ve been working across trade provider organizations. We’ve hosted several Q&As to help people get trusted information in a way that helps them to make informed decisions. I know many of the trade organizations, in addition to the state efforts, are hosting their own campaigns to help the direct care providers, as well as members, understand the vaccine. There’s so much misinformation out there, so we’re working really hard to give people informed information to make solid decisions. That said, there’s no plans for us to require providers or members to take the vaccine or disclose whether or not they’ve taken the vaccine, at least not at this juncture. That might be something in the future to consider, but at this point we have seen that staff are pretty forthcoming about their willingness. We must continue to have those infection prevention plans in place because we don’t have vaccine acceptance across the board.

With the initial rollout of the vaccine in December, we had what I think we all found to be a fairly disheartening level of acceptance for the vaccine. Now here we are in February and it’s jumped leaps and bounds by 25-30%. We are hopeful that those acceptance rates will continue to jump up significantly in the coming months.

Josh Winkler: I would add that you don’t lose eligibility if you didn’t get it when you first became eligible. So whether that was residents or employees in a facility, they’re still eligible. When we move on to Phase 2 everybody in Phase 1A and the 1B categories will still be eligible. It’s a good thing but also adds to the need to err on the side of caution when we are figuring out the numbers on how far the doses will go and how long it’ll take to get through a phase.

Bonnie Silva: Our biggest constraint right now is the federal supply of the vaccine. We are ready! Give it to us, federal government, and we will deploy! We are all anxiously awaiting the day that any Coloradoan who wants a vaccine will be able to get one. Our biggest challenge right now is that we simply don’t have enough vaccine coming in.

Kaley Day is an Advocate for Adults with AdvocacyDenver.

She is a graduate of the University of Denver, majoring in Strategic Communication, and a sibling to a young man with disabilities. Kaley publishes Policy Perspective featuring interviews with state policymakers and community members on issues that affect the work and mission of AdvocacyDenver.

For questions or comments, contact Kaley at kday@advocacydenver.org

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