February 2, 2021

Preston Raban Steven Rutherford Theresa Cullen County Health Greenlee County Health Pima County Health Department Department Department

Alicia Thompson Marion Shontz Tascha Spears County Health & La Paz County Health Pinal County Health Social Services Department Department Department Marcy Flanagan Jeff Terrell Kim Musselman Maricopa County Health Santa Cruz County Health Coconino County Public Department Department Health Services District Denise Burley Leslie Horton Paula Horn Mohave County County Gila County Health Department of Public Community Health Department Health Services

Brian L. Douglas Janelle Linn Diana Gomez Graham County Health County Public Yuma County Public Department Health Services District Health Services District

Dear County Health Directors:

Each County in Arizona has been working to ensure that vaccines are given first to those who most need them. Certainly, front line workers and the elderly are appropriately in your initial groups. There is another group of highly vulnerable individuals whom we ask you to consider for higher prioritization: people with a wide range of disabilities and chronic health conditions across the age spectrum.

Close to 300 members of the Arizona Developmental Disabilities Network and other concerned individuals and organizations participated in a forum on January 22, 2021, during which we learned that current vaccine prioritizations have excluded many vulnerable groups, including those whom we represent. We believe these groups can and should be given higher priority tiers. We are asking your county health department to make the following changes:

1. Individuals with Down syndrome (DS), particularly those over 40 and/or those younger than 40 with significant comorbidities, be prioritized under 1B, as based upon the December 23, 2020 Centers for Disease Control & Prevention (CDC) COVID high risk classification. 2. People with disabilities of any age who receive long-term services and supports (LTSS) through the Arizona Long Term Care System (ALTCS) waiver services and programs and/or the Division of Developmental Disabilities (DDD), ALTCS members, be included under 1C.

3. Members of the intellectual and developmental disabilities (IDD) community who currently live in Department of Economic Security (DES) group homes retain their 1A status and other members of the IDD community be included under 1C, with IDD considered as an underlying health condition. 4. All family members and informal caregivers of ALTCS members and the IDD community who are providing home health or are serving as a home aide/caregiver for a person with a disability should be prioritized under 1A with other health care workers. This is a similar prioritization to states like California and and to Arizona’s ALTCS-funded paid family care attendants who are already prioritized under 1A. 5. The County should develop policies, procedures, and an outreach plan to account for the fact that many vulnerable adults in our community are homebound. 6. The County should reevaluate their communication plan with the disability community and other underserved groups and include disability rights organizations as key partners in this plan. 7. The County should recommend subpriorities within 1B and 1C based on who has been most impacted by the pandemic taking into account race, ethnicity, and geography.

Disparate Health Outcomes

People with IDD are at a higher risk than the general population for acquiring the coronavirus. Early data show that people with IDD face a higher risk of death and increased disability due to COVID-19. A recent FAIR Health white paper analyzed more than 467,000 insurance claims with a diagnosis of COVID-19 documented across all age groups. The analysis showed people with IDD have the third highest risk of COVID-19 death and are three times more likely to die than the general population; people with DS are 10 times more likely to die. Moreover, these data revealed that the risk of death for an individual with DS after age 40 is equivalent to the risk of death for an individual without DS after the age of 80.

Due to these alarming statistics, the CDC added Down syndrome to the list of medical conditions that increase a person’s risk for severe illness from COVID-19, meaning they are more likely to be hospitalized, placed in the ICU, put on a ventilator, or die. Based on these outcomes, the CDC strongly recommended that individuals with DS, particularly those over 40 and/or those younger than 40 with significant comorbidities, be prioritized under 1B for COVID-19 vaccination programs.

Risk Factors

We ask that, in addition to considering the findings from these studies, you consider the fact that there are multiple risk factors for members of the IDD community and ALTCS that should be considered in the County prioritization plan, specifically:

1. Many members of the IDD community and ALTCS live in congregate settings. Congregate settings include licensed and unlicensed homes in Arizona, such as assisted living, 1-2 bed or 3-4 bed adult family homes, and community-based residential facilities. People in these settings are often unable to make decisions regarding who and how many outside people provide supports and services. Their service providers are

often in intimate proximity, which does not allow for physical distancing. Many settings that are not formally licensed through the Arizona Department of Health Services (DHS) or DDD are still congregate in nature but have not been notified they are eligible for vaccines. As a result, many in this group have yet to be vaccinated. 2. Members of the IDD community and ALTCS disproportionately attend day services in congregate settings, including adult day care, day service centers, and sheltered workshops. They use congregate transportation, such as buses, to get to those settings. These situations bring together people with disabilities and providers from many different households, increasing the risk of contracting the virus. While many have policies in place to limit exposure, it is impossible to eliminate all risk. 3. Members of the IDD community and ALTCS who live in their own homes or supported apartments are still at greater risk of contracting COVID-19. Most have multiple caregivers providing hands on care to them. Paid caregivers may also be working with multiple individuals at multiple locations, increasing the risk of spreading the virus between individuals. Although technically covered under phase 1A, most of these informal and private care workers are not connected to any health care system and do not have ready access to the vaccine. Vaccination under phase 1A that was supposed to protect vulnerable members living in the community (by protecting its care force), has not been implemented at this time, leaving both the caregivers and the people they serve at risk of infection. Compounding this issue is the high rates of vaccine hesitancy among caregivers. 4. Some members of the IDD community and ALTCS have limited ability to follow CDC recommendations that reduce the potential for contracting and spreading the virus. Sensory issues, receptive and expressive language disorders, and inability to assess safety risks are all typical symptoms of intellectual disabilities that make it far more likely that this population will be unable to comply with basic preventative protocols. The largest national survey of Direct Support Professionals (DSPs) indicates that approximately 40% of the people supported by DSPs have either only fair or poor social distancing practices. 5. ALTCS members are eligible for a nursing home level of care but have been able to live in the community with supports and services. To qualify for Arizona’s long-term care waiver services, an individual must be found eligible to need a nursing home level of care. This group of Arizonans would have fallen into 1A if they were not being cared for in the community under the home and community-based waivers.

Additional Data-Informed Recommendations

The Arizona Health Care Cost Containment System (AHCCCS) already has access to the location, health conditions, and the service systems that deliver the care to ALTCS members. Members have routine contact with a care manager who can help them gain information on how and where to receive the vaccine and can facilitate reminders when the second dose needs to be administered.

We recommend that the County develop policies, procedures, and an outreach plan to account for the fact that many vulnerable adults in our community are homebound and unable to leave their homes for various reasons. For example, other state health departments explicitly included language to have contracted nurses vaccinate homebound individuals. In Corpus Christie, Texas, paramedics phone and schedule vaccines for homebound individuals. Having policies in

place would ensure those who are unable to travel will have equitable access to the COVID-19 vaccine once it becomes available. In Arizona, a model already exists in the congregate facilities contract between the State and both CVS and Walgreens, whereby pharmacy employees take the vaccine to group homes and other residential settings to administer injections to residents where they live.

We recommend that the County reevaluate their communication plan and include disability rights organizations as key partners in this plan. We have heard from individuals in the community that there have been consistent barriers to communication of key information to the IDD community. Vaccination details require effective communication in accessible formats (e.g., plain language, ASL, Braille, audio, large print, etc.). Disability organizations can help identify networks to communicate with the various communities. Information about the vaccine (efficacy, prioritization, side effects, clinical trials, Emergency Use Authorizations) can be overwhelming. In addition, information should be easily accessible in Spanish, as well as other languages.

Finally, we encourage the County to recommend subpriorities within 1B and 1C based on who has been most impacted by the pandemic. For example, not all older adults 75+ have been similarly situated, with death and infection rates disproportionately impacting older adults of color. Further subprioritization based on considerations such as race, ethnicity and geography is critical in ensuring a vaccine allocation grounded in equity.

We respectfully request that you adopt these seven recommendations and modify your current prioritization, communication, and dissemination plans based on this information. We again ask that you include everyone with DS over the age of 40 and/or those under that age with existing comorbidities as well as the entire population in the Medicaid long-term waiver under home and community-based services (HCBS) in the 1B or 1C priority groups, as well as individuals who have IDD and their informal and family caregivers.

We believe this is in keeping with your existing priorities to make certain those most vulnerable receive the vaccine as quickly as possible. It is the logical, fact-based, and humane next step. If you have any questions or concerns about any of this information, please contact Jon Meyers at The Arc of Arizona, [email protected] or (602) 290-1632, or any of the organizations that have signed below.

Sincerely,

Arizona Center for Disability Law Arizona Developmental Disabilities Planning Council Institute for Human Development – Northern Arizona University Native American Disability Law Center Sonoran University Center for Excellence in Disabilities – University of Arizona The Arc of Arizona

For people with intellectual and developmental disabilities

The following Arizona residents and Arizona organizations add their names to the letter submitted by the Arizona Developmental Disabilities Network requesting the most vulnerable residents of this state immediately be placed in the highest priority categories for COVID-19 vaccination:

Ability360 Alicia Allen Ames Construction Alisha Nichols Arion Care Solutions Alison Luongo Arizona Association of Providers for Alixandra Coolidge People with Disabilities (AAPPD) Allison Hall Arizona Public Health Association Allison Smith Assist! To Independence Allison Weeks A-Z Homecare Options Alma Avalos Civitan Foundation Alma Williams Contigo Disability Advocacy LLC Alyson Coffin David's Hope Amanda Steele Down Syndrome Network Arizona Amber Mathis Down Syndrome Network for Southern Amy B. Chan Arizona (SANDS) Amy Bockerstette Emma's Angels Amy Bonner First Place Phoenix Amy Dill Guthrie Mainstream Services Amy Herrgesell Life Challenge, Inc. Amy Weissman-Hunt MLHCT LLC Ana Gonzalez NAMI Southern Arizona Ana Rosa Chavarin One Step Beyond Inc. Analuisa Felix Raising Special Kids Andrea OBrien Southwest Autism Research & Angel Lin Resource Center (SARRC) Angela Darland Udall Law Firm Angela Homco Angela Jeffreys Angelica Zarazua A Miura Angie Haddad Abbie A. Archunde Angie Winkyaw Adriane Hofmeyr Ann Despain Agnes Attakai Ann Lettes Aida Reid Ann Whidden Aidan Colvin Anna Hollington Alana Branges Annalysa Lovos Alba Sukkar Anne Cona Albert Marcuri Anne Lupi Alex Rasmussen Anne M. Atkins Alfonso A Aranda Anne Shiff

Annie P. Mayson Brittany Woodbury Anthony Aguilar Brooke Harris April Ruiz-Alegria Bruce A. Beda Araceli Olivas Bruce Schwartz Ariane Davaul Bryan Bennett Ariel Sansom Bryan DeWitt Armida Martínez Burr Udall Ashley Halvorson Cameo Van Kleeck Ashley Kovara Camille Parra Ashley Low Car-Lee Clark Ashley Stockton Carmen Sterner Athiana Lerma Carol Gregorio Athiana Lerma Carol Jordan Bailey Lockwood Carol Wolfe Balbina Garcia Caroline Montijo Barbara Adelson Carrie Hollman Barbara and Charles Tucker Cassandra Laughrey Barbara Bruno Catherine B. Campbell Barbara Buric Catherine Boyle Beatriz Benitez Catherine Hurla Benjamin Duncan Catherine Quinn Beth Bryan Cathy Colburn Betty Giddens Cathy Kelroy Beverly Rosales Cathy LaSusa Bianca Demara Cathy Sweeney-Daniel Blake Cutlip Celia Villalobos Blake Hannaford Chad Butche Bob Mangum Chamisa Colvin Bonnie L Schurr Chandra Williamson Brad Herron-Valenzuela Charles Johnson Brad Wierck Charles Jonathan Kent Brady Dalton Charlotte Higdon Brandi Thomas Chelsea Stanton Brandon Mouer Cherry Chang Brenda Celardo Cheryl Dickerson Brenda Dodge Cheryl L. Coppola Brenda Quinones Cheryl Phipps Brenda Sanche Cheryl Segneri Brendan Gersten Cheryl Sucato Brent Belone Chris DeWitt Brent Jackson Chris Jordan Bret Cutlip Chris Kimminau Brie Seward Chris Martin Brittany Bowen Christina Bernardo Brittany Sweeney-Lawson Christina La Motte

Christopher Bowden Denise Resnik Christopher Couet & Dr. Jill Couet Diane C. Lopez Cindy Ratke Diane Kleiner Cindy Sanderson Diane Melrose Claire Hadley Diane Witthar Claudine A. Seger Dolores L. Aguilar Clifford Jenkins Don Thomas Cody Gates Donna Beseth Colleen Sand Donna Borbolla Connie Marks Donna Cummings Connie Thomas Donna Derrick Constance Richardson Donna Gillespie Corina Parra Donna Monson Cortney Denis Donovan Canter Crystal Grubbs Dori DiPietro Crystal Malcolm Doris Wagner Cynthia E. Kolbas Dorothy Szaiff Cynthia Hardy Dr. Carla Boyd Cynthia Savage Dr. Lisa Lorence del Valle Dale Goebel Dr. Mary Estrada Daniel Dodge Dulce Cadena Danielle Christine Miglio Eileen Tohonnie Danielle Lertique Eileen Szychowski Danielle Remencus Eleanor Williams Danielle Servin Elizabeth Franco Darius Brumand Elizabeth Hage Darrell Yazzie Elsie J. Kimminau Daryl Quezada Emily Jespersen David Beatty Erik Frandsen David Brent Gorney Erin Araujo Dawn Ferrara Esteban Hernandez Deane Daniels Fay Moore Deb Cometta Franceine Winston Debbie Hicks Frances Forton Debbie Schwartz Frans Tax Debbie Smith Freda Johnson Debby Allen for Matthew S Allen Gabriel D. Fernandez Debby Urken Gail Capshaw Deborah Bosma Gale Quackenbush Deborah Lamoree Gary J. Clark Deborah Lozano Gary Shurtz Dee Graham Gasper Limon Deirdre Utley Genevieve Bravo Delphine Bromell Genia Gevelhoff Denise Milinovich Geoffrey Bruce

Gerald Kaufman Janice Moore Gregg Newmark Jason Butche Hailey Van Vorce Jason Yoder Hanna Newman Jay Alaga Hannah Brisso Jeanine Ryan-Frandsen Hannah Greene Jeanne Anastasopoulos Hans Bajao Jeanne Mullen Paskvan Hans Gevelhoff Jeff Goldfarb Harry Edmondson Jeffrey Parks Heather Faison Jenifer Shaffer Heather McLean Jennifer Adair Heather Padilla Jennifer Bockerstette Heather Williamson Jennifer Lynch Heidi Miller Jeremy Mier Heidi Pottinger Jerry St Mary Helen Lundgren Jeryl Ogden Herbert Dreiseszun Jessica Cordova Herman "Gib" Zickerman Jessica Crain Holly Keeble Jessica Flores Horace Bell Jr. Jessica Loza Indelisa Mendibles Jessica Verdugo Ioana Malnasi Jesus Lacarra & Amalia Lopez Irma Maria Mendoza Jill A. Nico Isaac Lopez Chavez Jill Brumand Isabel Georgelos Jill Pearns Ivonne Pimentel Jill Seymour Jack Milinovich Joan Anderson Jack Schell Joan Nagy Jackie Barr Joan Stauch Jackie Thompson Joan Tellez Jacqueline Murrietta Jodi Brocki Jacqui Wilcox Jodi Newmark James Clark Joe Gotobed James Epstein Joel Bettenhausen Jamie Edgin John Korhonen Jamie Korn John "Corey" Paskvan Jana Seals John Abel Jane Fry John Frank Jane Rovero-Kruzel John Paskvan Janene Nielson John Ruiz Janet S. McEwan John T. Langan Janet St Mary John Tils Janet Yonker Jonathan Dombek Janice Buck Jonathan Ray Janice Grubbs Jordon Rude

Joseph Bockerstette Kathy Hoffman Joseph C LaBrie Kathy Schock Joshua Dillie Kathy Tellez Joshua Munoz Kathy Vizzera Joy Woodbury Katrina Warriner Joyce Millard Hoie Kay Martens Judi Maikoff Kellie Strong Judith Walker Kelly A. Lohr Judy Gates Kelly Eaton Judy Kowalick Kelly Gorney Judy Myers Kelly Meyer Julia Wilkinson Kelly Morales Julie Bank Rollins Kelly Nevins Julie Beren Kelly Pillar Julie Burnham Kelly Ramelka Julie Karra Kelsie Duran Julie Kim Ken Bottrill Julie Schmoker Kendra Lopez Julie Valade Kennon Colvin June Rogers Kerry Hodgkinson Kahnen Dunn Kim Anderson Kaitlin Baker Kim Branges Kara Karlson Kim Peterson Kara Portner Kim Scott Kareesa Grant Kimberly Birch Karen Bettenhausen Kimberly Bolin Karen DeWitt Kimberly Collingwood Karen Dunivant Kimberly Hulet, mother to Danielle Karen Guadnola Kimberly Kenworthy Karen Homa Kimberly Rogan Karen Jones for Fletcher Jones Kristen McGinnis Karen M. Vranjes Kristin Cutlip Karen Mosakowski Kristin Zacher Karen Poppe Kristina MacMurdo Karen Riddle for Christine Riddle Kristina Ruiz Karen Thompson Kristine Larcey Karen Szilagyi Kyleah-Mae McCloud Karin Siggins Lan Thomas Karl Gevelhoff Lara Stewart Kathleen Brown Laura Chapnek Kathlyn Sloan Laura Valencua Kathryn Cohen Laura Valenzuela Kathryn Kenyon Labrie Laurel Fitzhugh Kathryn Mills Lauren Larsen Kathy Hayes Lauren Spatz

Lauren W Marissa Vick Laurie Lockyer Mark Acre Lea Latham Mark Hoffman Leah Hunter Mark J. Schwartz Leasa Giorlando Mark Murrietta Leonila Paredes Mark Willits Leslie Mouer Mark Witthar Leticia Tellez Marlene N. Mora Bernal Linda Oesterle Marletta Wagner Linda Koshewer Marnita Johnson Lindsey Salisbury Marsha Horshok Lisa Ashton Marsha Lindsey Lisa Becker Martha B. Tellez-Peru Lisa Bickel Martha C. Vance Lisa Denis Martha Encinas Lisa Garza Martina Lively Lisa Maria Jasper and Family Mary Ann Niccoli Lisa Nagy Mary Beth Walker Lisa Wierck Mary Blanchard Logan Frank Mary Brumand Lori Gomez Mary Carroll Lori Mouer Mary Hadsall Louis J. Hoffman Mary Hernandez Louise Bowden Mary J. Greenwald Lydgia Gaderick Mary Locke Lynn Ashton, Sr Mary Lou Herrgesell Mackenzie Makel Mary Lou Micheaels Madeline Wolberg Mary Provenzale Maggie Laughlin Mary Ryan Majica Enriquez Mary Vincelette for Bradley Vincelette Malissa Murga Maryann Donovan Mamie Warrick Mary-Carol Wagner Margaret Corcoran Matilda Gits Margaret H. Mangum Matt DeWitt Maria Holguin Matt Erickson Maria Kowch Matt Sandoval Maria Scholnick Matthew Celardo Maria Serrano Matthew Lampert Marian Fonley Maureen Atwood Marian Fonley Maureen Davey Marilyn Boyd Maureen Mills Marilyn Kolesar Maverick Frank Marilyn Suiter & Curt Bowes Maxine Mathews Marion Kaufman Meg Rustad Marissa Hebel Melanie Blackmer

Melanie Goldstein Nikki Sears Melanie K. Fay Nina Bernardo Melissa Mier Nina Trasoff Melissa Noshay-Petro Octavia Peru Melissa Wolf Oluwakemi Oso Merrily M. Hill Pamela Dunn Michael Church Paolo Contu-Owen Michael Hernandez Pat Bellecomo Michael Leyva Pat Rall Michael Lundergan Patrice Kimararungu Michael McLean Patricia Dreiseszun Michael Miller Patricia Morales Michael White Patricia Whitlatch Michele Kelly Paul Bennewitz Michele Lee Paul Czaja Michele Martin Paula Hughes Michele Romanoski Paula Jean Anderson Michele Thompson Perry L. Hicks Michelle Bartlett Pete DeWitt Michelle Langan Phil and Elaine Meyer Michelle M. Wright Phyllis Weiland Michelle Mannenbach R Denery Michelle Riggs Rachel Chacon Michelle T. Langan Rachel Fisher-Covert Michelle Wynne Randy Weiland Miguel Condit Raquel Fernandez Mike Homco Rayellen Kishbach Mike Kelley Rebecca Couch Miranda Sampsel Rebecca Reams Misti Henrie Rebecca Sartor Mitchell Siebrandt Regina Koch-Mart Mohamad Abuobeid Reina Walker Molly Casson Renee Bennett Moneen L Durkin Renee Greene Monica E. Encinas Rev. Gary Nicolosi Monique Hernandez Rhoda Folkers Nancy Bernhard Richard Nancy Erenberg Richard Arrotta Nancy Francque Richard Kowalski Nancy Morton Roatajudy S. Vehikite Nancy Ottmann Rob Resnik Naomi M. Weisz Robert Guerrero Natalie Jasso Robert J. Beatty Naty V. Rico Robin Carle Nicole Guysi Robin Frielich

Robin LaVoie Stephanie Best Ron La Motte Stephanie Crawford Ronald Malcolm Stephanie Levy Ronnie Simon-Westreich Stephanie Lloyd Rosalind Ricks Stephanie Papadopoulos Rosemary Guadiana Stephanie Tacey Rosie Hofelich Stephen Herrgesell Roslyn Tayne Stephen Vereker Ruben Mier Steven & Rebecca Durfey Ruth Shannon Sue Murphy Ruthee Goldkorn Sunny M. Jundt Sabrina Ferrari Susan Cravener Sai Chandran Susan Golembeski Sai Winkyaw Susan Holmes Samuel Moon Susan Larson Sandra Johns Susan Martin Sandra Kelley Susan Pinto Sandy Ortiz Susan Rohrbach Sandy Quintanilla Susan Stodola Sarah Hales Susie Turrey Sarah Khananisho Sydnee Schwartz Sarah Petersen Sydney Humble Sarah Scott Sydney Madrid Scott Fidel Sylvi Gonzalez Scott M. Kloefkorn Sylvia Rios Sean Finley Talia Tax Sergio Castro Tanya Kotrys Shannon Grant Tanya Ornelia Sharon Blanton Tayler Burchard Sharon Juarez Teresa Cordova Sharon Lynch Terry B. Dwyer Shawn Singer Thomas Bradley Shawna Flammia Thomas L. Brooks Sheila Schwartz Thomas Langan Sherri Meredith Tiernan Walker Shirley A. Lowman Tim Mouer Shirley Coil Stanhope Tina Wiese Sidney Bernabei Tom and Amina Donna Kruck Sidney Williams Tony Hoffman Sindell Soto Tracie Sterrett Somer Messerly Tracy Carroll Sophia Lenny Tracy Malcolm Stacey Hadley Tracy Peterson Stacy Boyles Tracy Schwalm Stanley B Kruzel jr Troy Damper

Trupti Dave Wendi Sobelman Vanna White Wendy Frank Veronica Peterson Wilhelmina Tax Vickey Duenkel William C. Heimerdinger Vicki Jensen William Clark Vincent Fuschini Winona Black Feather Warren Breisblatt MD Yvonne Phelan