Autism CARES Act: Advocacy Needed Now for Reauthorization!

The Autism Collaboration, Accountability, Research, Education and Support Act (also known as the Autism CARES Act) will sunset (expire) on September 30, 2019, if it is not renewed (reauthorized) by Congress by then. The current Autism CARES Act (S. 427/H.R. 1058) provides $260 million annually to autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA). These programs benefit all people with developmental disabilities, including all people with Down syndrome and especially the approximately 18% of people with Down syndrome who have a co-occurrence of autism.

On Wednesday, July 24, 2019, H.R. 1058, which reauthorizes CARES for five years, passed the House of Representatives. Its Senate counterpart, S. 427, has not yet come up for a vote in the Senate. We need your help in the following ways to urge the Senate to act on this bill:

1. Take advantage of the remaining weeks of August Recess to contact your Senators in their home states by attending town hall meetings and other community events with them, or arrange a meeting with your Senators or their staff in their local district offices.
2. Spend some time advocating on social media. Sample tweet: #AutismCARES provides critically needed research, #LEND training, and system improvement for families with #autism and other related #disabilities. (Insert Twitter Handle of your Senator), support the passage of S.427 before it expires on September 30!
3. Respond to and share NDSC’s Action Alert on Autism CARES. Talking points and other information you may need for your advocacy efforts are included in this alert. Please use it to email and call your Senators’ offices; do this multiple times a week!

Update on MFP: Advocacy Efforts Continue

Another critical program is also set to expire at the end of September 2019: Money Follows the Person. NDSC has been advocating for additional funding for Money Follows the Person (MFP), a widely adopted and very successful Medicaid program that has helped more than 88,000 people with disabilities and seniors move from nursing homes and other institutions into the community, and has helped 44 states improve access to home and community-based services (HCBS). The success of the MFP program has been widely recognized and documented as effectively moving individuals from institutional to community-based care settings, reducing waiting lists for HCBS services, and saving states money (See HERE for more details).

In late June, the House passed the Empowering Beneficiaries, Ensuring Access and Strengthening Accountability Act, or H.R. 3253, which includes a 4.5-year extension of the Money Follows the Person (MFP) program. This bill is on its way to the Senate and will most likely be considered in September with other health bills. NDSC will be sending out an updated Action Alert when the Senate returns from August Recess. Funding for MFP runs out in September 2019 so it will be critical to act quickly!

Public Charge Rule Finalized

On August 14, 2019, the Department of Homeland Security published the final Public Charge rule in the Federal Register. “Public charge” is a term used by U.S. immigration officials to refer to a person who is considered primarily dependent on the government for assistance. Determining that someone is likely to become a public charge can be used to deny admission to the U.S. or to deny lawful permanent resident status (i.e., a green card). Although the public charge rule has been in effect for a long time, the new regulations expand the definition of “public charge” include reliance upon non-cash benefits, such as nutrition assistance, housing vouchers and subsidized medical insurance through Medicaid. In addition to creating new barriers to legal immigration for people with disabilities and their families, these changes are likely to lead to decreases in participation in Medicaid and other programs by immigrant families and their U.S.-born children. Decreased participation in these programs could negatively affect the health and financial stability of families with at least one noncitizen. See here for more details about the impact of this new rule on the disability community.

Last Fall, when the Department of Homeland Security first proposed this rule, NDSC submitted comments to the Department of Homeland Security to express concerns that it would be discriminatory to people with Down syndrome in that admission to the United States – including travel for a medical procedure or to the NDSC Convention – could be denied solely on the basis of having a child with Down syndrome or another disability. We continue to share these concerns, and we anticipate there will be litigation to attempt to block these changes.

ACA’s Non-Discrimination Provision in Jeopardy

Under the Affordable Care Act Section 1557, discrimination on the basis of race, color, sex, age, national origin, or disability is prohibited in certain health programs or activities. On May 24, the U.S. Department of Health and Human Services (HHS) issued a proposed rule to revise regulations implementing and enforcing Section 1557 of the Affordable Care Act (ACA). These proposed revisions would weaken the nondiscrimination provisions of the ACA, potentially jeopardizing the healthcare of people with disabilities and chronic conditions. NDSC has submitted joint comments with many members of the Consortium for Citizens with Disabilities (CCD) in which we urge HHS not to finalize this regulation in whole or in part due to the anticipated detrimental impact it will have on our community. The CCD comments also assert that the proposed rule lacks any reasonable basis for altering settled law, and increases the likelihood of discrimination against people with disabilities in the critical area of healthcare financing and access to care. See here for more information about Section 1557 and the detrimental impact on people with disabilities that the implementation of this new rule would have.

ABLE Act Update

NDSC has been advocating for the passage of the ABLE Age Adjustment Act (S. 651, H.R. 1814), which would raise the age of onset of disability from 26 to 46 for people with disabilities to have ABLE (Achieving a Better Life Experience) accounts. ABLE accounts are financial tools that are designed to help individuals with disabilities to save for and pay for disability-related expenses (like housing, transportation, personal support services, health care costs, etc.) without jeopardizing their public benefits. Right now, to open an account, an individual must have a disability that began before the individual turned 26. An increase in this age of onset to 46 would result in six million additional individuals with disabilities becoming eligible to open an ABLE account. This age increase would also enhance the sustainability of some ABLE programs nationwide by boosting the number of accounts opened. Watch for an upcoming Action Alert on the ABLE Age Adjustment bill and help us get it passed this Fall!

To date, there are forty-three ABLE programs around the country (42 states plus the District of Columbia). Many of these programs are open to qualified individuals nationwide and offer additional benefits like state income tax deductions.

August has been designated by the ABLE National Resource Center (ANRC) as “ABLEtoSave month, which is a grassroots education and information campaign about ABLE accounts. The primary goals of this campaign are to increase awareness about ABLE accounts and to accelerate the number of eligible individuals with disabilities who are opening and benefiting from ABLE accounts across the country. There is still time to sign up for some of the free webinars on ABLE-related topics offered by ANRC as part of this campaign. For more information about ABLE programs, please visit the ABLE National Resource Center.

Office of Special Education Programs (OSEP) Requests Comments on State Monitoring

Every year OSEP issues Annual Determinations on whether states have met requirements under the Individuals with Disabilities Education Act (IDEA) or whether they need improvement or intervention. This is part of what OSEP calls “Results Driven Accountability.” NDSC developed a brief to provide background on RDA.

OSEP recently requested stakeholder input on proposed changes regarding how data is used in making these determinations. NDSC submitted comments asserting that a few important data points are missing from the current Annual Determination process. We recommended that OSEP add least restrictive environment data as well as participation and performance data from alternate assessments to state Annual Determinations. If you want to support the NDSC recommendations or send your own, you can email OSEPDeterminations@ed.gov by August 30, 2019.

Funding Early Childhood is the Right IDEA Act

On July 31st Congressmen DeSaulnier (D-CA) and Davis (R-IL) announced the introduction of legislation to increase funding for two programs within the Individuals with Disabilities Education Act (IDEA) specifically designed to serve young children with disabilities: IDEA Part C, which authorizes federal funding for early intervention services to infants and toddlers with disabilities ages birth to three years; and IDEA Part B, Section 619, which authorizes supplementary grants to states for preschool programs serving children with disabilities ages three through five. The Funding Early Childhood is the Right IDEA Act would increase appropriations between FY2020 and FY2024 to levels not seen in the last twenty years. NDSC has signed on to a list of organizations in support of this bill.

Using the Family and Medical Leave Act to Attend IEP Meetings

The U.S. Department of Labor issued a letter stating that a parent can use the Family and Medical Leave Act to take time off to attend a child’s IEP meeting if the child has a “serious health condition.” Under the Act, this term includes illness, injury, impairment, or physical or mental condition that involves continuing care by a health care provider. An “employer” under the Act is described as any person engaged in commerce or in any industry or activity affecting commerce who employs 50 or more employees for each working day during each of 20 or more calendar workweeks in the current or preceding calendar year. ‘Employer” also includes public agencies.

State of the Art Conference College Fair

Did you miss the first-ever College Fair for students with intellectual disabilities at the NDSC convention? The State of the Art Conference will be holding a College Fair on November 12th in Reno, Nevada, which is FREE for students and families. Click HERE for more info or to register for the State of the Art Conference on Postsecondary Education and Students with Intellectual Disability. NDSC is a proud co-sponsor of this conference that brings together students, families, colleges, program staff, and others to learn from one another and network. The Student Leadership Conference is also a great opportunity for current and future college students with ID.

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