COVID Spike & Vaccine Prioritization for California’s Disability Community

As we all know, California is in the middle of a very dangerous surge of COVID-19 cases and our ICU capacity around the state is nearing 0% capacity.  This still rising surge – mostly a result of Thanksgiving social gatherings – is especially tragic for our community of Californians with disabilities, their families, and their direct support staff.

Figure 1 – Number of Regional Center Consumers Newly Reported at COVID-19 by Week

California’s Disability Community

People with intellectual and developmental disabilities (IDD) are at higher risk for becoming infected and three times more likely to die of COVID-19, compared with patients without IDD, a new analysis found.  Additionally, the traumatic impacts of isolation continue to raise urgent and widespread concerns of mental health for people with IDD.  This heightened risk can be mitigated, however, with healthy direct support professionals (DSPs) and family caregivers, but organizations across the state are reporting that this safety net is cracking.

During these Holiday weeks, The Arc of California urges all Californians to protect vulnerable communities by taking all measures to eliminate the spread of COVID-19.

One measure that will help is the recent approval and distribution of vaccines, but many questions exist about who has priority access to vaccines.  The California Department of Public Health, with input from community stakeholders, has published a prioritization schedule for the top level, Priority 1A.  As we have seen, distribution has already begun for medical staff, who are considered to be in the top tier of Priority 1A.  Staff and personnel in nursing facilities and other similar settings are also in the top tier.

As reported from meetings of the Community Vaccine Advisory Committee, direct support staff for home and community-based services, including regional center services, IHSS, home health, and ICFs, AS WELL AS FAMILY CAREGIVERS are in tier 2 of Priority 1A for vaccine distribution.  Based on current projections of vaccine availability, this tier should have access to the vaccine by the end December.

California’s Disability CommunityThe distribution of the vaccines can be complicated, especially the process for notifying individuals when they have priority access to the vaccine.  The Arc of California urges all family caregivers, service providers, regional centers and others stakeholders in the disability community to be in contact with your county public health office to ensure you have access.

What has not yet been finalized and is still being discussed is Priority 1B.  Currently, individuals with disabilities are NOT included in Priority 1B.  Discussions about this priority level have mostly revolved around essential workers, including agriculture, education & child care workers.  The Arc of California argues that individuals at greatest risk of serious illness or death should also be included in Priority 1B.

If you would like to submit public comments to the Community Vaccine Advisory Committee you can email them to  You can view public comments submitted by The Arc of California here.

The Arc of California recognizes the unique history between the disability community and vaccines, and we encourage all individuals and families to make an informed decision about the efficacy and safety of vaccines, along with the risks of not taking a vaccine.  Last week the State Council on Developmental Disabilities conducted several listening sessions to hear individuals share their thoughts, hopes, and concerns on this topic, and The Arc of California will work closely with The State Council to provide information to the community.



Project Connect December

It’s Okay to Not Be Okay

Mental health experts are cautioning people that as COVID fatigue meets holiday stress it could be harder and harder to fight depression and anxiety, or for those already experiencing it, it could intensify significantly. Many people are feeling the pressure to be “okay” even though they are not really feeling okay. There are so many additional daily stressors this year that contribute to just simply wearing people down – parents working from home and dealing with remote learning or day program services, finding safe support if you can’t work from home, struggling to hold on to businesses, isolation, holiday expectations, money, fear, loss, anxiety about getting COVID, anxiety or fear of someone you love getting COVID, and so much more – and make it harder to maintain emotional or mental well-being. Mental health professionals urge people to take the time to recognize that this is a very stressful time, and it is okay to feel that stress, but the challenge comes with how you deal with the stress. Research shows that increased, and compounding, daily stress (chronic stress) increases the risk of developing serious depression or anxiety if the chronic stress goes unaddressed or unhealthy coping mechanisms are used to deal with the stress.

Many people have holiday traditions, expectations, or special things that they do every year to celebrate. Mental health professionals suggest that even though it will be a non-traditional celebration this year people should still do something meaningful to help keep spirits up. Some of the strategies that have been suggested are DSP (we all know how important DSPs are)

Decorate – whether a little or a lot, have something festive in your space

Social Connections – maintain your social connections even if it is just a 5-minute phone call it is important to stay connected to family and friends

Plan – make plans for what you want your holidays to look like next year.

Above all, talk to someone! If you are struggling know that you are not alone. Project Connect, a telehealth support line for individuals with disabilities, their families, direct support professionals, and others who support individuals with intellectual or developmental disabilities, is available free of charge and it is here for you. I wish everyone a healthy, safe, and peaceful holiday season!

Project Connect December

COVID-19 Department of Developmental Services and CA Department of Public Health Update

Last Friday the Developmental Services Taskforce met to provide an update for stakeholders throughout the state. The Department shared their concern that there is an alarming increase in the number of individuals with intellectual and developmental disabilities in the state that are testing positive for COVID-19, an increase in hospital admissions, and an increase in deaths. The Department is tracking the number of new cases, and hospital admission so they can work with individuals, families, and providers to continue to identify trends and develop strategies to slow the spread of COVID, provide care for people who have tested positive, and plan accordingly for surge capacity. Complicating the issue is the increase number of direct support professionals and family members that are testing positive. Accurate data is essential to developing interventions, so the Department is requesting that if someone in the household – clients, family members, direct support person – tests positive they contact their service coordinator to let them know.

Dr. Ron Chapman, California Department of Public Health, spoke to the DS Task Force about the COVID-19 Vaccine and the work that is being done at the state level to address issues of priority and distribution. The California Department of Health and Human Services Agency, CA Department of Public Health, had created a Community Vaccine Advisory Committee to address issues specific to equitable vaccine implementation and decision-making. The disability community is well represented on the Advisory Committee as the State Council on Developmental Disabilities, Disability Rights CA, Disability Rights Education and Defense Fund, are among the members of the Advisory Committee.  The Advisory Committee will meet 6 more times between now and February 17, 2021. If you are interested in learning more about the work of the Advisory Committee visit:

The first round of doses of the vaccine are expected to arrive in CA early this week and be prioritized for frontline workers in hospitals and health care. The CDPH is projecting that there will be approximately 2 million doses in California by the end of December.  The CDPH has published recommended guidelines based on a phased approach to vaccine distribution which can be found here:


California Establishes Vaccine Advisory Committee to Ensure Equity in COVID-19 Vaccine Access

Last week the California Department of Public Health (CDPH) announced membership in the Community Vaccine Advisory Committee with broad representation from organizations throughout California to provide input into the distribution and allocation of the COVID-19 vaccine. The committee will help guide the state’s decision making and build equity into decisions about vaccine distribution and allocation. California’s planning process for the eventual distribution and administration of COVID-19 vaccines continues to be guided by three overarching principles. They include ensuring the COVID-19 vaccine meets safety requirements, ensuring the vaccine is distributed and administered equitably, at first to those with the highest risk of becoming infected and spreading COVID-19, and making transparency a top priority by bringing in community stakeholders from the beginning.

Equity in distribution of vaccines is particularly important to Californians with intellectual and developmental disabilities – who may be at higher risk of becoming infected or having serious illness due to COVID-19 – their families, and the essential workforce that provide critical supports and services.

The disability community has a long, complicated, and at times tragic past with vaccines and medical trials. The Arc of California will work with partner organizations to ensure the needs and concerns of the disability community are represented in discussions and ultimately decisions made related to vaccine distribution and priorities.

To learn more about the Community Vaccine Advisory Committee and California’s vaccination plan go to

COVID-19, Unemployment Insurance, and People with Disabilities

The Arc has received concerning reports that people with disabilities on SSI who lost their SSI benefits because they received unemployment insurance payments are also receiving a termination notice from Medicaid. This shouldn’t happen and there is clear CMS guidance (see #33) on the issue. We have a fact sheet on this issue available here and attached. In short, unemployment benefits are counted differently than wages and so people may lose their SSI benefits (although the benefits should be suspended for 12 months and not terminated so once the UI benefits run out, SSI should be restarted without the need to reapply), but should not lose Medicaid because of protections from the Families First Coronavirus Response Act.


Late last week we began to get word from our contacts on the Hill that the House of Representatives has been in communication with the White House and talks have resumed on a possible 4th COVID relief package before Congress’ election recess. Speaker Pelosi has indicated that the House will vote on a compromise COVID relief bill sometime this week, we are hearing that the bill will be around $2.4 trillion ($1 trillion LESS than the HEROES Act that the House passed in May). The White House has also raised their bottom line, something that they had not done all summer, up from $1 trillion to $1.5 trillion, so there is movement. We are still unsure of the true viability of the package, but we need to push hard right now.

Take action by going to and taking a few minutes to call, tweet, and/or email your member of Congress.



On Friday, August 31 the California Department of Developmental Services (DDS) published a new directive, effective September 1, 2020, outlining the policies and procedures for reimbursement of claims for providing nonresidential services using alternative approaches during the COVID-19 State of Emergency.  The stated purpose of the directive is to “permit Alternative Services that meet the individual needs of consumers, sustain the state’s developmental services provider network, and continue receipt of federal reimbursement for services provided to consumers during the COVID-19 State of Emergency.”

The directive is a response to urgent concerns across the state that direct support staff were being laid off and clients were not being reached as a result of continued forced closures of nonresidential services (e.g. day programs, transportation) due to the ongoing public health crisis.

Last week DDS hosted several webinars to clarify the directive and answer questions from families and service providers.  Below are some of the clarifications and answers provided during the presentations; the department will publish more guidance and FAQs soon:

  • Alternative Services are not mandatory.  If a client is currently receiving the same service they were receiving prior to the pandemic, even if that same type of service is now being provided remotely, then it is not considered an Alternative Service, and providers will bill for those services as they did prior to the pandemic.
  • If a provider is providing both traditional and Alternative Services for the same client then the provider shall bill under the Alternative Services method for the entirety of services provided for that client.
  • A service provider will need to submit their certification to their regional center prior to submitting their first billing for Alternative Services.
  • If a client begins receiving services in September or October they will not have a historical monthly average of service to use to bill for Alternative Services.  The department acknowledges this concern and will publish guidance on this soon.
  • September, 2020
    • Providers engage consumers and families about service options, initiate individual service plans (ISP), and provide Alternative Services.
    • Regional Centers send a confirmation letter to the client/family.
    • A symposium on Alternative Services, including a series of webinars to highlight innovative approaches to service delivery.
  • October, 2020
    • Providers finalize ISP for each client and provide Alternative Services.
  • November, 2020
    • Rates will no longer be formulated using historical monthly averages per client, but instead the department will publish new rates to be used for Alternative Services.

Clients, families, and providers should contact their regional center with any questions, or questions can be directed to the department at

California issues rules for opening schools and programs to high-needs students

State Superintendent Tony Thurmond and Governor Gavin Newsom Providing Updates on Covid-19

The California Department of Public Health on Tuesday published rules for opening school campuses and other programs to small numbers of students with disabilities and other students who need in-person support and services that can’t be met through distance learning.

The guidance applies to groups of children and youth in controlled, supervised, and indoor environments operated by local educational agencies, non profits, or other authorized providers, including, but not limited to, public and private schools; licensed and license-exempt child care settings; organized and supervised care environments, i.e., “distance learning hubs”; recreation programs; before and after school programs; youth groups; and day camps.

The guidance defines a cohort as “a stable group of no more than 14 children or youth and no more than two supervising adults in a supervised environment in which supervising adults and children stay together for all activities (e.g., meals, recreation, etc.), and avoid contact with people outside of their group in the setting.”

The guidance doesn’t specify which students would be eligible, although an accompanying Frequently Asked Questions document states that students with disabilities should be prioritized and English learners, students at higher risk of further learning loss or not participating in distance learning, students at risk of abuse or neglect, foster youth and students experiencing homelessness can be priority groups. They could receive tutoring, counseling, social and emotional services and other help to fully participate in distance learning.

The FAQ also says that the size of the building and school enrollment will determine the maximum number of cohorts and that the number of returning students should not exceed 25% of total enrollment.

The Arc of California is conducting an in depth analysis of the guidance and FAQs is seeking clarification on questions from the offices of Governor Newsom and State Superintendent Tony Thurmond and will publish a more detailed report on Monday in our Monday Morning Memo.

COVID-19 Medi-Nurse Line for Uninsured or Medi-Cal Beneficiaries with No Regular Source of Care – 1-877-409-9052

As cases of COVID-19 continue to increase the need for accurate and timely medical information is absolutely critical. People who are uninsured or have Medi-Cal, but no regular source of care, experience significant challenges accessing information and care during this pandemic. Presumptive Eligibility (PE) for COVID-19 was implemented on April 8, 2020 and is available to individuals to seek the necessary COVID-19 diagnostic testing, testing-related services, and treatment services, including all medically necessary care such as the associated office, clinic, or emergency room visits related to COVID-19 at no cost to the individuals.

The California Department of Health Care Services (DHCS)has recently launched a 24 hour/ 7 days a week Medi-Nurse phone line specifically to address questions and concerns related to COVID 19 for people who are uninsured or have Medi-Cal but no regular source of care.

Medi-Nurse services are available in multiple languages to provide information on COVID-19 – symptoms, testing, when, where and how to seek treatment – and how to apply for health insurance if needed. If you, or someone you know, are uninsured or a Medi-Cal beneficiary that does not have a regular source of care and experiencing symptoms that could be COVID-19 related do not delay accessing medical advice. Call 1-877-409-9052 and speak to a Medi-Nurse.

COVID-19 Symptoms include, but are not limited to:

  • Fever
  • Cough
  • Shortness of Breath
  • Fatigue
  • Muscle or Body Aches
  • Headache
  • New Loss of Taste or Smell
  • Sore Throat
  • Congestion/Runny Nose
  • Nausea/Vomiting
  • Diarrhea




Sacramento Did its Job, Now it’s up to Washington to Protect People with Disabilities

Despite the optimism surrounding California’s re-opening, the number of new COVID-19 cases stubbornly rises. The economy, bolstered by better than expected unemployment numbers, struggles to re-start and gain a solid foothold. Based on what we’re seeing, our recovery will be a long, laborious and expensive process.

As a coalition of statewide and regional associations and organizations representing people with intellectual and developmental disabilities, their families and support staff, we know that our State won’t fully recover unless and until we protect Californians who are most vulnerable at this time.

Thankfully, Governor Gavin Newsom and the Legislature rose to the challenge by protecting Californians with developmental disabilities in this year’s budget. Facing the most challenging deficit in a decade, our leaders preserved funding for the more than 360,000 individuals statewide (as well as their families and direct support professionals) that make-up the disability community.

On behalf of the Lanterman Coalition, we wholeheartedly thank our state elected officials for their leadership when we needed it the most.

However important this year’s state funding may be, it is important that our federal lawmakers advocate for the needs of the disability community during the COVID-19 threat too. In her proposed HEROES Act, Congressional House Speaker Nancy Pelosi prioritized state of emergency funding for our community with several important provisions, and now we need her Congressional colleagues to follow her lead.

Leadership from California state and federal elected officials could not come at a more critical time. Talk of the “new normal” is anything but. For the disability community, this phrase represents a massive understatement. Our community faces significant concerns. Many people with disabilities have pre-existing conditions that place them at greater risk of complications from COVID-19. They also carry greater exposure and transmission risks, particularly for those individuals living in a residential group home setting staffed by frontline direct support personnel.

So, for California’s disability community, adjusting to the “new normal” with modified programs that minimize exposure to COVID-19 and keeps our most vulnerable safe necessitates significant – and costly – changes.

As families and caregivers eye the future, efforts to provide quality of life and, in many cases, life-sustaining support will look much different as we implement many new safety protocols for our community. These mandates will have a major economic impact to disability service providers as they modify services, reduce in-person day program ratios and maintain social distancing. Some of the pandemic-related operational costs will include personal protective equipment, additional sanitation practices, more frequent transportation with lower ratios, increasing staff wages for those working on the front lines, testing equipment, new technology to facilitate remote services, and other modifications that aren’t yet known.

As this public health crisis continues to evolve, these modifications will remain in place until we achieve what Governor Newsom has described as “herd immunity” or until we discover a vaccine or viable treatment. It could take months to fully resume programs as they were before the pandemic.

As our state grows accustomed to these changes, it will be critical that we ensure continuity of care for individuals with disabilities. State and federal support is not only necessary, it’s essential for support staff to provide critical support services to Californians with disabilities.

The Legislature and Governor will re-evaluate the budget in August when the depth of our economic recovery, federal relief and the tax receipts are known. In the meantime, our community cannot wait given that we face an uncertain future. It’s essential that the federal government – the president and Congress – step up to help now.

Sacramento has done its job. As has Speaker Pelosi. Now it’s time for the U.S. Senate to focus its attention on issues that truly matter in July when the U.S. Senate resumes session and will be making critical decisions about emergency relief funding to the disability community during the pandemic.
We must do everything possible to minimize the impact of this outbreak on those with disabilities, and we urge our federal leaders to work to ensure any final bi-partisan agreement on the next COVID assistance legislation includes the provisions in the House bill.

On behalf of the more than 360,000 Californians with disabilities and their families, thank you Governor Newsom, the California Legislature, and our federal elected officials for your leadership. The funding decisions you make to protect vital support services and keep our community whole speak volumes about your priorities.

Visit to learn more about how you can become an advocate for those with developmental disabilities.

Jordan LindseyJordan Lindsey, Executive Director, The Arc of California and Chair, The Lanterman Coalition

About The Lanterman Coalition –

The Lanterman Coalition is a coalition of statewide and regional associations and organizations representing people with intellectual and developmental disabilities, their families and the workforce. It works to uphold the principles of the The Lanterman Act by advocating on behalf of Californians with developmental disabilities. Under this Act, the person with a developmental disability is entitled to receive services that enable the individual to live a more independent and productive life in an inclusive community.