Core to the mission of Independent Living Centers is advocacy! The members of CFILC develop positions regarding issues that impact people with disabilities, and we join our allies in advocating for access and equal opportunities for people with disabilities. To learn about the current issues see below, please contact Dan Okenfuss, CFILC's Public Policy Director.
Letter for California COVID-19 Vaccine Drafting Guidelines Workgroup December 31st, 2020
California Foundation for Independent Living Centers (CFILC) Executive Director, Christina N. Mills, is a member of California’s Community Advisory Vaccine Committee providing input and feedback to the planning efforts, and resolving barriers to equitable vaccine implementation and decision-making.
Below, please find a letter from the Advisory Vaccine Committee with important recommendations to the Members of the California COVID-19 Vaccine Guidelines Drafting Workgroup regarding access and equity for the disability community.
Dear Members of the California COVID-19 Vaccine Drafting Guidelines Workgroup,
We write as members of California’s Community Advisory Vaccine Committee who collectively represent people with a wide range of disabilities and chronic health conditions across the age spectrum. After consulting with one another on the proposed 1b vaccine prioritizations proposed by the Drafting Guidelines Workgroup last week, we ask the Workgroup to include two changes to the proposed priority tiers under phase 1b:
- Include people with disabilities of any age who receive long-term services and supports (LTSS) through Medi-Cal waiver services and programs, the In-Home Supportive Services (IHSS) program, the Program for All-Inclusive Care for the Elderly (PACE), and through Regional Centers.
- Provide a “safety valve” for people with disabilities and chronic health conditions of any age who can demonstrate with medical evidence that they are at great risk of severe health consequences including death if they acquire COVID-19.
We appreciate the Workgroup’s inclusion of people with comorbid conditions ages 64-75 years in category 1b. However, we also recognize that age, in itself, is a highly inexact proxy for the disability communities, particularly lower-income people with disabilities of color, who remain at high risk for COVID infection and/or severe illness. An individual with developmental disabilities in their 50s who lives in a small group home is, in fact, at significantly higher risk of acquiring COVID-19 than someone in their 60s who can safely shelter in place without visitors because of daily exposures to direct support workers in the small group home. Moreover, the CDC’s list of recognized comorbid conditions, does not include either real-time research into how people with different disabilities experience the virus (e.g., Landes, SD, Turk, MA, & Wong, AWWA (in press), “COVID-19 Outcomes Among People with Intellectual and Developmental Disability in California: The Importance of Type of Residence and Skilled Nursing Care Needs,” Disability and Health Journal, 101051), nor the impact of medical rationing and implicit bias on people with significant disabilities. For example, a high-weight individual with multiple healthcare conditions may be unable to access regular therapy for severe lymphedema without risking COVID-19 infection and, if they end up with COVID-19 during a surge resulting in health care rationing, they also are at risk of being denied care because of the application of crisis standard of care guidelines.
There is also the equitable consideration that many people with disabilities receiving home and community-based long-term services and supports require nursing home levels of care but fought to stay out of institutions or return to the community, potentially living with family in multi-generational homes. These individuals have not been subject to the tragic rates of infection in nursing homes, where they would ironically be receiving the vaccination now, but their risks of infection and severe illness during a time of rising community infection rates should accord them a place in category 1b, regardless of their age. Studies are beginning to bear out the disproportionate impact COVID is having on people with specific disabilities, including developmental disabilities, who are 3 times more likely to die, and people with Down Syndrome, who are 10 times more likely to die, but people with less frequently occurring disabilities could also bear disproportionate impacts that have not yet been the subject of study. https://tinyurl.com/y2a5f9ql https://www.acpjournals.org/doi/10.7326/M20-4986
We support the prioritized inclusion of personal care assistants who are coming into the homes of disabled people as front-line healthcare workers in category 1a, but since we don’t know the infectious capacity of those who have been vaccinated, those who receive personal assistance services must be separately evaluated for vaccination.
In order to provide some sense of the number of individuals that are being raised here we have some approximate figures below. Please bear in mind that there is considerable overlap both among the groups listed below as well as with other groups that are already proposed for inclusion in 1b (e.g., persons over 75 and persons between 64 and 75 with comorbid conditions).
- CA Assisted Living Waiver: 5,000, with 4,500 on the waitlist
- CA Community Based Adult Services Program: 40,000
- CA HCBS Waiver for Californians w/DD: 95,000
- CA HIV/AIDS Waiver: 1,500
- CA Home and Community Based Alternatives Waiver: 5,500, with 600 on the waiting list
- CA Multipurpose Senior Services Program: up to 12,000
- CA Self-Determination Program for Individuals with Developmental Disabilities: 350
- Community First Option: 250,000 (most overlapping with other categories in this list)
- IHSS: 600,500
- Regional Center Service recipients: 350,000
- PACE participant: 10,000
Our recommendation would include an approximate 1.1 million Californians who would very likely have fallen within 1a if they were not being cared for in the community.
Finally, we encourage the Workgroup to recommend subpriorities within 1b based on who has been most impacted by the pandemic. For example, all older adults 75+ have not been similarly situated, with death and infection rates disproportionately impacting older adults of color. Further subprioritization based on considerations like race and community would be consistent with subprioritization guidance for phase 1a and is critical in ensuring a vaccine allocation grounded in equity.
Thank you for the opportunity to provide our input to the Drafting Guidelines Workgroup.
Aaron Carruthers, California State Council on Developmental Disabilities
Andy Imparato, Disability Rights California
Christina N. Mills, California Foundation for Independent Living Centers
Denny Chan, Justice in Aging
Silvia Yee, Disability Rights Education and Defense Fund
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