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December 31st, 2020 Letter for California COVID-19 Vaccine Drafting Guidelines Workgroup
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
COVID-19 Vaccine Survey December 30th, 2020 There Is Power In Solidarity June 4th, 2020 In Solidarity Against Xenophobia and Racism July 18th, 2019 See all Issues for CFILC…
Public Policy PerspectivesMarch 27th, 2019 • Henry J. Contreras, CFILC Public Policy Director
Mobilizing for Brain Injury Awareness Month: California's Traumatic Brain Injury (TBI) Survivors and Their Families to Urge the Legislature to Stabilize and Enhance Funding
For over 3 decades, the Brain Injury Association of America has led a national effort to designate each March as "Brain Injury Awareness Month" in order to educate the public about brain injuries (TBI). The theme for its 2018 to 2020 campaign is #Change Your Mind.
The campaign seeks to remove stigma or negative thinking around brain injuries by reaching out within the brain injury community and empowering those who have survived brain injury and their caregivers. In addition, it promotes public awareness about the supportive services available to survivors and their families.
Nationwide, TBIs cause $76.5 billion in annual direct and indirect medical and rehabilitation costs and the loss of productivity. There are numerous causes of TBIs including, among many others, vehicle and bicycle accidents, slips and falls, combat-related injuries, or other trauma. Each survivor typically is left with an average $7 million in lifetime costs for care and rehabilitation.
In 1988, the Legislature established the California TBI Program. It was designed to fund local community-based models to provide community integration services for people with TBI and their families. The program is currently administered by the Department of Rehabilitation.
TBI Program originally funded 4 TBI pilot programs. By 1995, the number of TBI sites grew to the current 7 sites and they are represented by an advocacy organization the California Association of Traumatic Brain Injury (CATBI).
• FREED Independent Living Center serving Butte, Shasta, Sutter, Nevada, and Yuba counties…
• Mercy Outpatient Rehabilitation Center serving Sacramento, Placer, El Dorado, Yolo, and Solano counties;
• Services for Brain Injury serving Santa Clara and San Mateo counties;
• Central Coast Center for Independent Living- New Options serving Monterey, San Benito, and Santa Cruz counties.
• Jodi House Brain Injury Support serving Santa Barbara, San Luis Obispo, and Ventura counties;
• Independent Living Services of Southern California serving Los Angeles County; and
• St. Jude Brain Injury Network serving Orange County.
These critical services are unmet by any other service delivery model. They include Supportive Living Services to find and maintain housing; Community Reintegration Services for rehabilitative therapies, chemical dependency programs, and personal assistance and education; Information and Referral Services connecting consumers with TBIs and their families to local community resources and advocates; Vocational Supportive Services to coach finding and retaining employment; and Public and Professional Education to educate the community and professionals on issues relating to TBIs.
Although the program has proven effectiveness, it's been severely underfunded for many years and base funding has not kept pace with rising costs. This, in turn, has limited the ability of the sites to adequately meet existing service demands or to expand their service delivery areas and the populations served. Over the past 30 years, the size of the TBI population and the need for services have grown throughout California. However, services are currently available in only 20 of the 58 counties because the annual $150,000 in funding per site has remained frozen with no funding increases or cost-of-living adjustments.
This means that when adjusted for inflation, it would require $320,000 in 2019 dollars just to keep pace with the value of 1988 dollars. Compounding the problem is the fact that in some recent years the funding has fallen to $115,000 per site.
The gap between the demonstrated and growing need for TBI services and future expansion explains why CATBI welcomed news that Governor Newsome's budget for 2019-2020 proposed $1.2 million in state funding. This would restore funding to the historical $150,000 per site level through 2024.
On March 6, 2019 CATBI members, TBI survivors, and their caregivers offered eloquent and heartfelt testimony at an Assembly budget subcommittee hearing in support of the Governor's proposal. They described the impact of TBIs on their lives and the value of CATBI's services. They also plan to testify at the upcoming May 2nd Senate budget subcommittee hearing.
There is growing support for stabilizing and expanding the California TBI Program. A companion social media campaign is underway, so March 2019 ultimately may prove to be an important first step forward to expand public and lawmaker support for TBI services.
Henry J. Contreras
CFILC Public Policy Director
See all of Henry's Blogs on Public Policies…