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.

COVID-19 Tips

The California Office of Emergency Services (Cal OES) hosts an Access and Functional Needs Leadership call every week to discuss critical issues for people with AFN, their families, friends, and services providers. This week on the call, Cal OES highlighted a partnership with LISTOS California, the State Council of Developmental Disabilities, and the Department of Developmental Services to provide accessible and accurate information for people with intellectual and developmental disabilities. The materials include corona virus safety tips, self-care-tips, making a plan, and creating a health profile. These downloadable info-graphs are available in several different languages at:

Emergency Preparedness During COVID-19

The mere idea that we could have to deal with a natural disaster during this pandemic is undoubtedly overwhelming, but the reality is California is in wildfire season, earthquakes are always a possibility in this state, and other disasters exist that we may not even think of. So, how do we plan for an emergency is a state of emergency? The experts tell us that planning and being prepared makes a critical difference. Many of us likely have disaster plans but most plans likely don’t include COVID-19. The 3P’s of emergency or disaster planning – plan, prepare and practice – will help guide you as you think about where to begin if you don’t have a plan, or how to update your existing plan.

First, have a PLAN that everyone – family members, friends, neighbors, support staff, co-workers, employees, etc. – knows about. Everyone’s plan will be different, for example, if you have family or friends that live a couple hours away your plan might be to stay with them in the event of a public safety power shutdown (PSPS) or evacuation. Your plan might include a specific meeting place in the event you are in different locations if you get an evacuation notice. If your only option is to shelter somewhere besides your home The Centers for Disease Control and Prevention (CDC) offers some guidance on how to minimize risk of exposure to COVID-19.

Second, PREPARE for both sheltering at home and away from your home. This means have 2 “kits” ready. The home kit should include all the essentials that you would have for a disaster – a week’s supply of food, water, medicine, hygiene products, batteries, flashlights, first aid kit, etc. – the Red Cross has a comprehensive assessment tool to help people with disabilities assess and prepare for their individual needs. The second kit should be kept in the vehicle you plan to use if you need to evacuate or in a place you can easily access. The Red Cross disaster guide also has a list of what you should have if you need to leave your home. Remember to include person protective equipment (PPE) – masks, gloves, hand sanitizer, etc. – in your kits.

Third, PRACTICE your plan with everyone! Do disaster drills and practice emergency communications – such as calling or texting – with your family, friends and support network. Practice loading the car, leaving and discuss where you would go and why.

A couple other things to remember; call your utility company and see if they have an opt-in for emergency notifications or PSPS notifications, check to see if you qualify for the medical baseline program, and ask the utility company where you can get information on charging stations for battery operated equipment.

The ADA Network is hosting a Learning Session: California’s Emergency Plans for Wildfire Season in a COVID-19 Environment on July 9th. This webinar is a great way to find out more about preparing and emergency plan.


Two Federal Civil Rights Policy Changes Which Will Affect Patients With Disabilities During COVID-19 Pandemic and Beyond

WASHINGTON, D.C. – June 9th, in response to the first federal complaint challenging discriminatory hospital “no-visitor” policies, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic. Read The Arc’s full press release here.

Highlights from the hospital policy announced by OCR and Connecticut include that it:

  • Requires all hospitals and other health care facilities to allow designated persons (family members, staff, or others) to support any disabled patient that may need such support;
  • Requires hospitals to provide available personal protective equipment (PPE) to support persons to keep them safe;
  • Includes procedures for screening support persons for COVID-19 symptoms and for supporters to safely take breaks and leave and re-enter the hospital; and
  • Encourages hospitals to mitigate the risk associated with support persons supporting COVID-19-positive patients.


WASHINGTON, D.C. – June 12th, The same office, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services (HHS), finalized their ACA Section 1557 Rule which removes discrimination protections from LGBTQ people seeking health care and health insurance. Specifically, the rule redefines “sex discrimination” as only applying when someone is being discriminated against on the basis of their assigned sex at birth.

Under the new rule LGBTQ people, especially transgender people, can be denied medical care on the basis of their gender with no federal legal protection. This rule goes beyond the ability for providers to refuse gender transition related care. Doctors can refuse to treat transgender patients altogether.

How are these rules related?

The resolution clarifying that hospitals must allow in-person support for people with disabilities will undoubtedly save lives during the COVID-19 pandemic. Yet there are many in the disability community who are also transgender people. Many of whom have complex medical needs which are now at risk of going unmet. While the fact sheet issued by HHS’s OCR on ACA Section 1557 rule specifies that it protects individuals with disabilities, the rule itself removes transgender people with disabilities from this protection.


Unlike many states California has regulations in place at the state level which protect transgender people’s access to health care. Medi-Cal also has specific protections in place for transgender patients. Click here to view an interactive map which shows which states do and do not have these protections.



All of the work that The Arc network has done since March to show that #WeAreEssential showed up in the Heroes Act that was introduced in the House of Representatives this week. The House is expected to pass the nearly $3 trillion package. The HEROES Act will then move to the Senate where we are not anticipating immediate action. The latest COVID-19 relief package includes many crucial provisions for people with I/DD and their families but it will be negotiated and narrowed down in the Senate. We’ve definitely made progress, but we have MUCH more to do to make sure that the dedicated HCBS funding and our other priorities stay in the bill that ultimately becomes law.
View the full provisions of the HEROES Act here.