The CDC held a second meeting of the Advisory Committee on Immunization Practices (ACIP) on Friday to further review cases of rare blood clots connected to the Johnson and Johnson COVID-19 vaccine and assess their potential significance. Following the committee recommendation, both the CDC and FDA advised that vaccination with Johnson and Johnson should continue, with additional warning about blood clots.
Plain language:
Johnson and Johnson is again an option for vaccination. You can get vaccinated using any of three choices.
What it means to you:
You can still get your COVID-19 vaccine. You may have a choice that is only one shot.
Access to COVID-19 Vaccines for People with Disabilities
Vaccines are now widely available, increasing the need to ensure access for people with disabilities, and those that support them. Additional efforts are needed to provide information and address hesitancy.
Plain language:
Work is happening 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.
Action steps:
Share new resources and tools to support vaccination efforts:
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.
Email your Congressional delegation sharing AUCD's language and ask:
LEND - 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.
UCEDD - Members of the House are encouraged to show their support for UCEDDS and PNS by signing the letter requesting an increase in funding. Your member of Congress can sign this letter by sending an email to [email protected] by Friday, April 30.
Following the murder conviction of former Minneapolis police officer Derek Chauvin, attention has shifted to legislative efforts to address racial justice issues. Remarks from Vice President Harris and President Biden prioritized passage of the George Floyd Justice in Policing Act (H.R.1280). The police reform bill - which would make it easier to sue police officers by easing "qualified immunity," ban police chokeholds and "no-knock" warrants, prohibit racial and religious profiling, and establish a national database to track police misconduct - passed out of the House along party lines (220-212). The bill now heads to the Senate, where it is expected to undergo amendments in an effort to gain enough support for its passage.
Plain language:
Racism hurts our country. Congress is working on a bill to change how police officers do their jobs to protect Black and brown people.
What it means to you:
We all have a role in addressing racism and making needed changes. The injustice and inequality experienced by Black Americans is a human rights, civil rights, and disability rights issue. The disability community will work for change.
Action steps:
Learn more about the George Floyd Justice in Policing Act:
AUCD released a statement last summer on the death of George Floyd. Read the statement here.
Elijah E. Cummings Lower Drug Costs Now Act
The House Energy and Commerce Committee Chairman Frank Pallone, Jr. (D-NJ) re-introduced the Elijah E. Cummings Lower Drug Costs Now Act (H.R.3). The bill would:
Empower the Secretary of Health and Human Services to negotiate prescription drug prices in Medicare and make those negotiated prices available to commercial health insurance plans.
Cap Medicare beneficiaries' out-of-pocket spending on prescription drugs at $2,000 per year.
AUCD and the disability community are supporters of many of these important efforts. We are aware that the bill also includes policies that are based on discriminatory Quality-Adjusted Life Years (QALYs) and similar metrics based on averages. The disability community needs to educate members of Congress about QALYs and the need for advocacy to remove provisions that would create discrimination in access to needed care for people with disabilities.
Plain language:
Congress is working on a bill to lower the cost of medications. 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:
The Elijah E. Cummings Lower Drug Costs Now Act may have provisions that you support and that benefit people with disabilities. As it is currently written there is reason to be concerned that it could increase discrimination.
Read the open letter to Congress and the Administration from the disability community on 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.
Email or call the Capitol Switchboard at: (202) 224-3121 (voice) or (202) 224-3091 (tty) and connect to your Members of Congress.
You can use this easy tool to find your Members of Congress.
Biden-Harris Administration
President Joe Biden will deliver his first address toa joint session of Congress on Wednesday, April 28th, just before he marks his 100th day in office.
Biden accepted an invitation from House Speaker Nancy Pelosi (D-CA) to address a joint session. The speech whill allow President Bident to share progress during his first 100 days, historically a benchmark for the presidency. We expect that the President will also share upcoming priorities including those in the American Jobs Plan and the yet-to-be-released American Family Plan.
Action steps:
The joint address will be streamed with ASL interpreters and open captioning on the White House website: www.whitehouse.gov.
Infrastructure
Work in Congress is focused on negotiations of an infrastructure and economic recovery package. Last week Republican Senate Leaders released their Road Map, a $568 billion framework focused on items considered transitional infrastructure, such as repairs for bridges and updating waterways. This outline does not include plans to invest in other critical systems, such as Medicaid Home and Community-Based Services or efforts to end subminimum wages for people with disabilities by providing employment support services for competitive, integrated employment, pieces that were proposed as part of President Biden's American Jobs Plan.
Plain language:
President Biden has a new plan for improving our country's infrastructure; Republican leaders have shared a different plan.
Infrastructure means the buildings, roads, bridges, power lines, and other things our country needs to work every day. It can also include systems that make our country work like schools, healthcare, and other government services.
What it means to you:
Congress is working on an infrastructure and recovery plan. Disability issues are a large part of the American Jobs Plan, but not included in the Republican Road Map. All members of Congress need to hear from you about Home and Community-Based Services and Competitive Integrated Employment.
Email or call the Capitol Switchboard at: (202) 224-3121 (voice) or (202) 224-3091 (tty) and connect to your Members of Congress.
You can use this easy tool to find your Members of Congress.
Consider sharing AUCD's policy priorities, which include additional HCBS funding and supporting integrated employment.
USDA Waivers Through 2021-2022 School Year
The U.S. Department of Agriculture (USDA) announced the extension of child nutrition nationwide waivers and flexibilities for schools and child care settings through the entire 2021-2022 school year. These waivers ensure that children have access to free meals through the federal child nutrition programs during the pandemic.
Opportunity for Input: Twenty-First Century Communications and Video Accessibility Act
The Federal Communications Commission (FCC) recently released a public notice inviting comment on whether any updates are needed to the rules implementing the Twenty-First Century Communications and Video Accessibility Act (CVAA).
Read the official notice for further information on the proposal.
Submit your comments no later than May 24, 2021, by accessing the Electronic Comment Filing System at https://www.fcc.gov/ecfs/filings. All filings must reference GN Docket No. 21-140. People with disabilities who need assistance to file comments online may request assistance by email to[email protected].
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.
The offices ask that any feedback be provided, in writing, by Monday, April 26, by sending your comments to [email protected].
Disability Policy Seminar
We are grateful for your participation in the 2021 Virtual Disability Policy Seminar. Congratulations on your efforts and your impact. As a reminder, please send a thank you or follow up email to each Hill office you met with. This is a great opportunity to remind your Members' offices of your meetings, which builds the relationship, and can be a powerful way to get offices to take action.
Tips for your thank you/follow-up email(s):
Send as soon as possible (this week or next)!
Keep it short, but include attachments and links around the issues you raised, such as:
LEND - 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.
UCEDD - Members of the House are encouraged to show their support for UCEDDS and PNS by signing the letter requesting an increase in funding. Your member of Congress can sign this letter by sending an email to [email protected] by Monday April 26.
TPSID - Send along program specific materials about your inclusive college program, and remember to reinforce your specific asks - to visit, to follow a student around for a day, to discuss a possible internship in their office, or something else.
If you copy AUCD's policy team on your email, we can also follow-up with the offices to support your messages:
If you took a picture or screenshot of your Zoom meeting, we would love to see it! Please send to [email protected].
Tools to continue your advocacy:
Our stories are powerful political tools, and we can use them to make a difference! Check out this new advocacy toolkit from the Autistic Self Advocacy Network.
AUCD Policy Talk
"I have needed a wheelchair for three years now; something that's reliable like you look for in a car but because I'm in a wheelchair I don't get those things. It makes me feel as though my life is valued less than the lives of able-bodied people."
his week on #AUCDPolicyTalk, Melanie Davis, a Nebraska UCEDD Trainee and woman with a disability, shares her own difficulties getting a wheelchair through health insurance, and calls out the need for systemic improvements to how individuals with disabilities access medical equipment.
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
Racial Justice
Elijah E. Cummings Lower Drug Costs Now Act
Biden-Harris Administration
Infrastructure
USDA Waivers Through 2021-2022 School Year
Disability Policy Seminar
AUCD Policy Talk
