On April 13th the CDC and FDA jointly issued a statement calling for a pause on the use of the Johnson and Johnson COVID-19 vaccine following seven cases of rare blood clots in the nearly seven million people who have received the vaccine. The CDC held a meeting of the Advisory Committee on Immunization Practices (ACIP) on Wednesday to further review these cases and assess their potential significance. At that meeting they decided additional data was needed and agreed to continue the pause while more information is gathered. They will meet again on April 23, 2021.
People who have received the J&J/Janssen COVID-19 Vaccine within the past three weeks who develop severe headache, abdominal pain, leg pain, or shortness of breath should seek medical care right away.
Johnson & Johnson is not currently an option for vaccination. You can continue to get vaccinated using other options.
What it means to you:
You can still get your COVID-19 vaccine. You will need two shots.
Access to COVID-19 Vaccines for People with Disabilities
The HHS Office for Civil Rights released new guidance prohibiting disability discrimination and providing concrete examples of how COVID-19 vaccine programs can meet legal standards. OCR also issued a fact sheet for those involved in the planning and distribution of vaccines to promote compliance with disability rights laws and provide access to vaccination programs for people with disabilities.
The Administration for Community Living has compiled strategies and best practices for helping people with disabilities and older adults access COVID-19 vaccines.
Plain language:
The Administration is working to make sure people with disabilities can get COVID-19 vaccines.
What it means to you:
State and local groups have official guidance they can use to make sure people have access to vaccines.
Members of Congress are currently seeking your input on Fiscal Year (FY) 2022 priorities. Now is the time for network directors, faculty, partners, trainees, families and allies to educate their members of Congress about why investments in programs that support people with disabilities are important.
AUCD's FY 22 Budget Request by Program:
Program
FY 20 Enacted
FY 21 Enacted
FY 22 AUCD's Request
FY 22 President's Budget Proposal
Autism and other DD
LENDs
$52.344 million
$35.245 million
$53.844 million
$36.245 million
$56.5 million
$38 million
U.S. Health and Human Services topline:
$131.7 billion
Exact number TBD
UCEDDs
$41.619 million
$42.119 million
$45 million
U.S. Health and Human Services topline:
$131.7 billion
Exact number TBD
NCBDDD (within CDC)
$160 million
$167 million
$180 million
CDC topline:
$8.7 billion
Exact number TBD
TPSIDs
$11.8 million
$13.8 million
$14 million
U.S. Department of Education topline:
$102.8 billion
Exact number TBD
PNS
$12.25 million
$12.25 million
$14 million
U.S. Health and Human Services topline:
$131.7 billion
Exact number TBD
NICHD (includes IDDRCs)
$1.59 billion
$1.59 billion
$1.708 billion
National Institutes of Health:
$51 billion
Exact number TBD
Plain language:
AUCD is starting the process of asking for its yearly money from the federal government.
What it means to you:
Many AUCD programs get their funding from the federal appropriations process.
Appropriations is the act of setting aside money for a specific program from the federal budget.
Members of Congress are encouraged to show their support for LEND by signing the Letter requesting an increase in funding to align with the Interagency Autism Coordinating Committee's (IACC) recommendations for funding at NIH, CDC, HRSA, and Dept of Ed, as well as HRSA's funding of the LEND program. Your member of Congress can sign this letter by sending an email to [email protected] by Friday, April 23.
AUCD and the disability community have continued to be concerned about the use of discriminatory Quality-Adjusted Life Years (QALYs) and similar metrics based on averages in any health care legislation. This week two action steps were taken on this concern:
The National Council on Disability reached out to CBO with concerns that used QALYs to assess cost savings from H.R.3 in 2019.
The disability community sent an open letter to Congress and the Administration raising the importance of ensuring that discriminatory Quality-Adjusted Life Years (QALYs) and similar metrics based on averages are not a part of any health care legislation.
Plain language:
Congress is working on bills to improve affordability of health care. They need to hear from you about why people with disabilities are opposed to referencing Quality-Adjusted Life Years (QALYs) used in other countries.
What it means to you:
There are reasons to be concerned that legislation could increase discrimination.
Senators Casey, Smith, Gillibrand, Van Hollen, Blumenthal, Shaheen, Klobuchar, Stabenow, Brown, Cortez Masto, and Duckworth introduced their bill to permanently authorize spousal impoverishment protections for people eligible for Medicaid HCBS (S.1099). A related bill had previously been introduced in the House ( H.R. 1717). The protections, which allow the spouse of the person receiving Medicaid to retain a modest amount of income and assets, are currently only temporarily authorized for HCBS recipients through 2023.
Plain language:
This bill would permanently allow the spouse of the person receiving Medicaid to retain a modest amount of income and assets.
What it means to you:
The protections allow the spouse of the person receiving Medicaid to retain a modest amount of income and assets. Without action, it will expire in three years.
When educating Members of Congress about the importance of the proposed $400 billion for HCBS, it is fair to reference permanence of Spousal Impoverishment and Money Follows the Person.
Biden-Harris Administration
Appointments and confirmations to staff the new Administration continue. On Friday, April 16, Taryn Williams, was nominated as Assistant Secretary of Disability and Employment Policy, Department of Labor.
Plain language:
President Biden continues to appoint people who will serve our country during his Administration.
What it means to you:
The transition creates new leaders in federal agencies. The work of these agencies will create changes in federal policy that impacts the lives of people with disabilities and their families.
Action steps:
Continue to follow new from the Biden-Harris Administration at whitehouse.gov.
COVID-19 Data
The U.S. Census Bureau announced that the Household Pulse Survey has been updated. Additional questions have been added to address the following topics: disability, child health access, telehealth and child care. The Household Pulse Survey is the result of an effort by the Census Bureau and other federal statistical agencies to provide data on how individuals are experiencing business curtailment and closures, stay-at-home orders, school disruptions, changes in the availability of consumer goods and consumer patterns, and other changes caused by the pandemic. The Census Bureau shares the new data tables on a biweekly basis starting May 5, 2021.
Plain language:
Information about how COVID impacts America will now include people with disabilities.
What it means to you:
Additional data on the impact of COVID will be available.
Use new data on impact of COVID on people with disabilities to educate and advocate at state, local, and national levels.
Opportunity for Input: Home and Community-Based Services
Congresswoman Dingell (D-MI), Senator Hassan (D-NH), Senator Casey (D-PA), and Senator Brown (D-OH) released a discussion draft of the HCBS Access Act and are requesting feedback from stakeholders. The draft bill would mandate Home and Community Based Services (HCBS) in Medicaid to provide services, create national minimum requirements for HCBS, and make it possible to improve upon those services and the direct support professionals workforce. To build on the discussion draft, the offices are currently seeking feedback on:
Provider pay and rate structures of states for HCBS;
Workforce development, including but not limited to wages and benefits for direct service workers and personal care attendants as well as training and recruitment;
HCBS infrastructure in states that support family caregivers, provider agencies, and independent providers, including but not limited to housing, transportation, employment, and enrollment systems and processes;
Other related policies and programs such as Money Follows the Person and Spousal Impoverishment Protections; and
Many other critical items to further expand and improve access to HCBS for those who desire the supports.
Plain language:
Lawmakers are working on a bill to improve Home and Community Based Services across the country. They want to hear from you about what you need and any ideas you have.
What this means to you:
Home and Community Based Services (HCBS) help people with disabilities live in their own homes and receive services in the community. It is important that all people with disabilities have access to good HCBS no matter where they live.
As we get ready for Monday's kick-off of the Disability Policy Seminar, AUCD recognizes that there may be some questions or conerns around accessibility and accommodations.
If there is a specific item you would like answered, please email Jennifer Tuell at [email protected] and she is happy to coordinate with the Arc's events team to get them answered.
If you wish to contact the seminar coordinators directly the best email is [email protected].
For any addition questions, please contact the AUCD Policy Team:
A network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families, and communities.
Johnson & Johnson COVID-19 Vaccine
Quality-Adjusted Life Years (QALYs)
Spousal Impoverishment
Biden-Harris Administration
COVID-19 Data
Disability Policy Seminar
AUCD Policy Talk
