July 22, 2024 | Vol. MMXXIV | Issue 94

Budget and Appropriations

Congress is moving forward with marking up the appropriations bills. In the House of Representatives, all the bills have been successfully voted out of the Appropriations Committee. On July 10, the Appropriations Committee voted the bill out of Committee by a partisan vote of 31 to 25. It is expected that the LHHS bill will be voted on by the House of Representatives before the August recess. The Senate is still drafting the LHHS bill. The House bill contains massive overall cuts compared to last year, but level-funds many programs in the Administration for Community Living including the University Centers for Excellence in Developmental Disabilities (UCEDD), and in the Health Resources and Services Administration (HRSA), the Leadership Education in Neurodevelopmental Disabilities (LEND) Program.

Plain Language 

The House of Representatives has finished making its changes to the bill that funds most disability programs. The Senate is still doing its work on the bill.  

Action Steps

Read the Republicans' press release. Read the Democrats' press release. Call and educate your Members of Congress on the importance of increasing funding for programs for people with disabilities in FY 2025. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121.

House of Representatives Marks Up the Autism CARES Act of 2024

On June 12, the House Energy and Commerce Committee held a markup on 13 pieces of legislation, including the Autism CARES Act of 2024 (H.R. 7213). The bill was voted out of Committee by a voice vote of 42-0. The bill will support and expand the research of the Institutes of Health, support the capacity of the existing Leadership in Education in Neurodevelopmental Disabilities (LEND) Programs, require a report on how to increase the number of Developmental Behavioral Pediatricians, and more. The next step is for bill to be voted on by the full House of Representatives.

Plain Language 

On June 12, the House Energy and Commerce Committee voted on 13 healthcare bills including the Autism CARES Act of 2024. The Autism CARES Act passed with a vote of 42-0. The bill will improve research and training focused on people with autism and other developmental disabilities.

Action Steps

Call and educate your Members of Congress on the importance of improving research, training, and services for individuals with autism and other developmental disabilities. It is critical that as many Representatives as possible support the Autism CARES Act by cosponsoring it!

You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121. AUCD and the Autism Society of America have drafted this policy brief to help in outreach to offices.

House of Representatives Passes Recognizing the Role of Direct Support Professionals Act and Office of Management and Budget Begins Process to Include “Care Workers” in Occupational Classification Manual

On July 10, the House Committee on Education and the Workforce voted to pass the bipartisan Recognizing the Role of Direct Support Professionals Act (H.R. 2941) with a vote of 42-0, and the bill is headed to the floor for consideration by the full House of Representatives. The bill, sponsored by Representatives Fitzpatrick (D-PA-1) and Morelle (D-NY-25), urges the Office of Management and Budget (OMB) to establish a separate category within the Standard Occupational Classification (SOC) Manual for direct support professionals for data reporting purposes. If the bill passes, it will help the OMB begin to more specifically collect data on care workers who provide home- and community-based services. The Senate passed the bill on March 21, 2024 (S. 1332).

On June 12, the OMB issued a request for input from the public on a variety of topics to update the SOC Manual in 2028. Comments are due by August 12, 2024. One possible revision is the inclusion of “care workers” as an occupation, including how to name and describe the job.

The Standard Occupational Classification Manual standardizes descriptions of occupations to ensure consistency and comparability of data on each occupation. This data can include typical wages, how many people work in each occupation, and other essential information. Currently, the SOC does contain occupations that include some direct care workers but lacks a designation that specifically captures the work of care workers who support older adults and people with disabilities. Because the SOC lacks a specific label for this job, “policymakers frequently do not have the data they need to make important decisions about the range of direct care workers that provide home- and community-based services.”

Plain Language 

On July 10, the House Committee on Education and the Workforce voted to pass the Recognizing the Role of Direct Support Professionals Act (H.R. 2941). This bill would make a different category in the Standard Occupational Classification (SOC) for direct support professionals who provide home- and community-based services (HCBS).

The Standard Occupational Classification (SOC) is an official government system that lists all jobs in the country. Both Congress and the Office of Management and Budget are trying to include the job that home- and community-based services (HCBS) providers do so that the government can better collect data to use to improve HCBS. Until August 12, people can provide comments on whether or not the job should be included in the SOC.

Action Steps

Read more about this announcement. Provide comments by August 12. Read the bill text. Call and educate your Members of Congress on the importance of establishing direct support professionals as a designated occupation in the SOC to improve HCBS. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121.

Centers for Medicare and Medicaid Services Calls for Measures to Update Home-and Community-Based Services Quality Measure Set

The Centers for Medicare and Medicaid Services (CMS) works with Mathematica, a research and data analytics consultant, to improve their Medicaid and Children’s Health Insurance Program (CHIP) Quality Measurement and Improvement Program. Mathematica is issuing a call for input on behalf of CMS for people to suggest measures for addition or removal to make updates to the Home-and Community-Based Services (HCBS) Quality Measure Set. The HCBS Quality Measure Set “is a set of nationally standardized quality measures for Medicaid-funded HCBS.” Its role is to promote consistency in evaluating and comparing HCBS programs across the country, which is important in improving quality of care and outcomes for people receiving HCBS.

This call for input is directly related to the Ensuring Access to Medicaid Services (Access) final rule that CMS published on May 10, 2024. The rule “requires states to report every other year on a set of nationally standardized HCBS quality measures, referred to as the HCBS Quality Measure Set, and describes the process for updating and maintaining it.”

Separate forms must be submitted for each measure.

Suggest a measure for addition.

Suggest a measure for removal.

Mathematica is holding an information session where they will answer questions on the submission process on Monday, August 12 from 2:00 - 3:00 PM ET. Register.

Plain Language 

The Centers for Medicare and Medicaid Services is asking people to comment on how to measure the quality of home- and community-based services so that the programs can be compared across the country. The company that works with the Centers for Medicare and Medicaid Services will hold an information session where they will answer questions.

Action Steps

Submit measures for addition or removal by Friday August 16 at 8:00 PM ET. Register for the information session on this process.

U.S. Department of Education’s Office for Civil Rights Releases New Resources on Protecting Students with Disabilities in K12 and Higher Education

The U.S. Department of Education’s Office for Civil Rights (OCR) released three new resources informing students with sickle cell disease, epilepsy, and cancer of their rights under Section 504 of the Rehabilitation Act of 1973. These new resources explain how students with these medical conditions are protected under Section 504, what kinds of changes an educational institution might need to take to prevent discrimination, and what a university or college would need to do to fix issues that have come up from past discrimination.

Section 504 of the Rehabilitation Act “prohibits discrimination against students with disabilities by institutions that accept federal financial assistance, which includes almost all public schools and public and private institutions of higher education.”

The new resources regarding sickle cell disease, epilepsy, and cancer are available on the OCR website.

Plain Language 

The Department of Education is providing information to students with sickle cell disease, epilepsy, and cancer so that they know their rights in college. These resources include information about Section 504 of the Rehabilitation Act, which makes discrimination against students with disabilities illegal.

Action Steps

Read the resources about sickle cell disease, epilepsy, and cancer.

Senators Schmitt and Casey Introduce the Ensuring Nationwide Access to a Better Life Experience (ENABLE) Act

On June 13, Senator Schmitt (R-MO) and Senator Casey (D-PA) introduced the bipartisan Ensuring Nationwide Access to a Better Life Experience (ENABLE) Act (S. 4541), which would extend provisions improving the Achieving a Better Life Experience (ABLE) Act that will expire in 2025. The ABLE Act enables people with disabilities and their families to save and invest in tax-free savings accounts without losing their eligibility for federal benefits like Medicaid and Supplemental Security Income (SSI). The ENABLE Act would make permanent three key provisions of the ABLE program:

• Enable people with disabilities to be employed and continue to save for the future in their ABLE accounts

• Enable people with disabilities who are contributing to their ABLE accounts to qualify for a nonrefundable saver’s credit of up to $1,000

• Enable people with disabilities to transfer some funds from a 529 education savings account to an ABLE account

Plain Language 

The Ensuring Nationwide Access to a Better Life Experience (ENABLE) Act would make sure that people with disabilities can be employed and still save in their ABLE accounts, get money included in their taxes, or save for college in their ABLE accounts.

Action Steps

Read the bill text. Read the press release from Senator Schmitt. Read the press release from Senator Casey. Call and educate your Members of Congress on the importance of extending the provisions of the ABLE Act so that people with disabilities can keep their federal benefits while they save for the future. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121.

Employer Assistance and Resource Network on Disability Inclusion to Hold Webinar on Hiring People with Disabilities in Clean Energy Jobs

The Employer Assistance and Resource Network on Disability Inclusion (EARN) will host a webinar with representatives from the Climate Jobs Institute (CJI) at Cornell University’s ILR School to present on CJI’s work to tackle the climate crisis and build a diverse, inclusive workforce. This webinar will discuss how to include people with disabilities in the climate jobs industry and increase disability inclusion in clean energy industries and their partnerships.

The webinar will take place on Wednesday, July 24 from 2:00 - 3:30 PM ET.

Plain Language 

The Employer Assistance and Resource Network on Disability Inclusion will host a webinar to talk about hiring people with disabilities in clean energy jobs—such as making solar panels or researching the climate crisis—and people will be able to ask questions and hear from experts.

Action Steps

Register for the webinar.

Register for the White House Office of Public Engagement Aging and Disability Communities Call

The White House Office of Public Engagement regularly hosts calls to discuss any federal updates that will affect older adults and people with disabilities. The next call is July 25, at 2:00 PM ET. Register.

Check out the latest episode of "Tuesdays with Liz: Disability Policy for All"

“Tuesdays with Liz: Disability Policy for All” is a YouTube video series highlighting current issues and hot topics in disability policy. Past guests of Tuesdays with Liz include U.S. Senators, U.S. Representatives, agency officials, AUCD leadership, and key members of the disability community.

Liz Weintraub is AUCD's Senior Advocacy Specialist and the host of "Tuesdays with Liz: Disability Policy for All."

Liz has extensive experience practicing leadership in self-advocacy and has held many board and advisory positions at state and national organizations, including the Council on Quality & Leadership (CQL) and the Maryland Developmental Disabilities Council.

Find the full playlist on YouTube or check out the latest episode featuring U.S. Senator Chris Murphy.

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