Disability Policy News February 17, 2020

February 17, 2020 | Vol. MMXX, Issue 7
Home and Community Based Services (HCBS)

Senator Casey (D-PA) introduced the HCBS Infrastructure Improvement Act (S. 3277) to provide federal funding through multi-year grants to help states’ HCBS service delivery systems. States would have the flexibility to use funding to achieve three or more of the following goals: Expand the supply and availability of affordable, accessible housing; Provide accessible, affordable, reliable, equitable transportation options; Increase wages and benefits and support and sustain direct care professionals; Expand competitive, integrated employment for people with disabilities; and Build comprehensive, no-wrong-door application, referral and counseling systems.

Plain Language:

  • This bill would give money to states to create better home and community-based services and systems for people with disabilities.

What this means to you:

  • Through waivers and state plan options, Medicaid offers states ways to provide HCBS. Yet, the needs are more than the available services. In 2017, more than 700,000 individuals were on wait lists to receive HCBS. States need resources to improve their service delivery networks to meet the needs of people with disabilities and older adults.

Action Steps:

  • Contact your Senators to sign on as co-sponsors: United States Capitol switchboard: (202) 224-3121.

Action Needed Fiscal Year 2021 Appropriations Request February 11, 2020

Action Needed

Fiscal Year 2021 Appropriations Request

February 11, 2020

Background

The President’s FY 2021 budget request cuts or eliminates funding for LENDs, UCEDDs and PNS.

· University Centers for Excellence in Developmental Disabilities: $33 million, a cut of $8.7M

· Autism and Other Developmental Disorders (which includes LENDs): zeroed out, a cut of $52M

· Projects of National Significance: $1 million, a cut of $11.25M

Read more about the President’s budget request in AUCD’s first look.

Now is the time for network directors, faculty, partners, trainees, families and allies to educate their members of Congress about why these investments are important.

Action Needed:

1. Educate the Congressional Delegation of your state or territory about AUCD’s requested appropriations asks to support your center by sending them an email.

2. Share the appropriations request with your institution’s legislative affairs team and lobbyist. Getting these asks included as University priorities can be highly impactful.

AUCD’s appropriation asks.

· UCEDD

o Long Version

o Short Version

· LEND

o Long Version

o Short Version

· Projects of National Significance (PNS)

o Long Version

o Short Version

—-

The Association of University Centers on Disabilities, located in Silver Spring, MD, is a national, nonprofit organization that promotes and supports the national network of interdisciplinary centers advancing policy and practice through research, education, leadership, and services for and with individuals with developmental and other disabilities, their families, and communities. For more information, visit aucdinfo.

###

AUCD
1100 Wayne Avenue, Suite 1000
Silver Spring, Maryland 20910
301-588-8252
www.aucd.org
aucdinfo

Disability Policy News February 10, 2020

February 10, 2020 | Vol. MMXX, Issue 6
Medicaid

The House passed a resolution expressing disapproval of the Trump administration’s harmful actions towards Medicaid (H Res 826). This is in response to the Center for Medicare and Medicaid Services announcement of a recent block grant proposal.

Plain Language:

  • The House of Representatives does not like how the federal government is giving states a chance to change how Medicaid is paid for.

What this means to you:

  • The waivers would directly hurt people with Medicaid by taking away coverage and access to needed care by cutting federal funding. People with disabilities, children, and older adults will be affected.

Action Steps:

  • Read CMS’ Healthy Adult Opportunity Fact Sheet.
  • Read AUCD’s Policy Talk Blog in response to this announcement.
  • Contact your state legislature, state Medicaid Directors, and Governors to share your concern on the impact this would have on people’s to access healthcare.

Disability Policy News February 3, 2020

February 3, 2020 | Vol. MMXX, Issue 5

Medicaid

Last week, Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma announced plans for a new opportunity for states to seek waivers to receive defined payment for adults covered by the Affordable Care Act’s Medicaid expansion under a new proposal called "The Healthy Adult Opportunity." This is another attempt to convert Medicaid to block grants. The plan is expected to face immediate legal challenges.

Plain Language:

  • The federal government is giving states a chance to change how Medicaid is paid for. There will be fighting over this.

What this means to you:

  • The waivers would directly hurt people with Medicaid by taking away coverage and access to needed care by cutting federal funding. People with disabilities, children, and older adults will be affected.

Action Steps:

  • Read CMS’ Healthy Adult Opportunity Fact Sheet.
  • Read AUCD’s Policy Talk Blog in response to this announcement.
  • Contact your state legislature, state Medicaid Directors, and Governors to share your concern on the impact this would have on people’s to access healthcare.

Disability Policy News January 27, 2020

January 27, 2020 | Vol. MMXX, Issue 4
Social Security

The Social Security Administration wants to change its rules for people who get disability benefits, including Supplemental Security Income (SSI). Most people would have to prove their disability every two years. The proposed rule expands the use of continuing disability reviews (CDR). Currently, SSA reviews eligibility for Old Age Survivors and Disability Insurance (OASDI) and SSI benefits more or less frequently based on three different categories: every 6-18 months if medical improvement expected (MIE), every 3 years if medical improvement possible (MIP), and every 5-7 years if medical improvement not expected (MINE). The proposed rule adds a category called "medical improvement likely" (MIL) in which reviews must occur every two years and requires review for people in the MINE category every 6 years. They are accepting public comments until January 31.

Plain Language:

  • New rules could change how often people with disabilities have to prove they need benefits. Social Security needs to hear from you.

What this means to you:

  • If Social Security moves forward with this proposal more than two million people, often with significant disabilities impacting the ability to work full-time, will be at risk of losing benefits over the next ten years.

Action Step:

· Dear Social Security Commissioner Saul: I am writing about the proposed Social Security rule that would make most people getting disability benefits prove that they have disabilities every two years. I am very worried about the rule. It can be very hard to get disability benefits. For some people it takes years, and it is a stressful and time-consuming process. Disability reviews more often will create additional burdens for people with disabilities who cannot work and are struggling with income insecurity. This rule would hurt people with disabilities. Please do not go forward with this rule. Sincerely,

  • Contact your members of Congress. Social Security has to follow the law when it issues the new rules. Congress can investigate whether the new rules fit with the law. Ask your members to look into the new rules.

Disability Policy News January 20, 2020

Disability Policy News logo, every Monday, from the Association of University Centers on Disabilities (AUCD) Disability Policy News logo, every Monday, from the Association of University Centers on Disabilities (AUCD)
January 20, 2020 | Vol. MMXX, Issue 3
ACL logo with three people unified one blue, red, and orange

Administration on Community Living

On January 14, 2020, President Trump announced he wants to nominate Julie Hocker to fill the long-vacant position of Assistant Secretary of Labor, Office of Disability Employment Policy (ODEP). Ms. Hocker will vacate her current position as the Commissioner of the Administration on Disabilities at the Administration for Community Living (ACL) at the Department of Health and Human Services.

Disability Policy News January 13, 2020

January 13, 2020 | Vol. MMXX, Issue 2
Family Caregiving

The Administration for Community Living (ACL) has issued a request for information/input to assist the RAISE Family Caregiving Advisory Council in developing its initial report to Congress and to inform the development of the national family caregiving strategy and help the Council plan future activities, including public listening sessions. The deadline for public input is February 7, 2020.

Plain Language:

· The government wants to hear from you about being a family caregiving.

What this means to you:

· ACL and the advisory council are identifying actions that communities, providers, government, and others are taking and may take to recognize and support family caregivers

Action Steps:

· You can provide input here: https://acl.gov/form/public-input-raise.

· The request was also included in the Federal Register: https://www.govinfo.gov/content/pkg/FR-2019-12-09/pdf/2019-26438.pdf.

· Use AUCD’s plain language guide Public Comment and Regulations.

Disability Policy News January 6, 2020

January 6, 2019 | Vol. MMXX, Issue 1
New year, new look! Your weekly policy news has a new look. In an effort to bring you policy news every week in plain language, AUCD felt it was time to make the title "InBrief" more accessible. So we now bring you Disability Policy News! You will find plain language sections for each policy update, what it might mean to you, and our suggested action steps. We hope you find this even more helpful to bring federal policy news to you weekly. Please share any feedback you have on our new look!

Disability Policy News December 20, 2019

December 20, 2019 | Vol. MMXIX, Issue 50
But it’s not Monday!? Enjoy a special edition of InBrief to wrap up disability policy happenings of 2019.

Budget and Appropriations

Congress passed a spending package to fund the federal government for fiscal 2020. Labor-HHS-Ed Appropriations includes positive news for the disability community. This avoided another Continuing Resolution or government shutdown. A reminder of process: this bill was voted by the whole House, then the Senate, with the final step of the President signing it. Reminder of terms: a federal appropriation is the act of setting aside a part of the federal budget to a specific program or use.

Plain Language:

  • Congress passed a deal to fund the government so there would not be a shutdown.

What this means to you:

  • Many programs that impact the disability community and your centers received level funding and even increases in funding.

Action Step:

AUCD’s Appropriation Advocacy

AUCD works directly to advocate for the following budget lines:

University Centers for Excellence in Developmental Disabilities Education, Research and Service (UCEDDs)

FY 18

(in millions)

FY19 AUCD FY20 Ask FY20
$40.6 $40.6 $43.5 $41.619*

*The agreement includes $1,000,000 to establish a pilot program to support partnerships between existing University Centers for Excellence in Developmental Disabilities and highly-qualified, non-profit service providers to develop models that offer individuals with Intellectual and Developmental Disabilities and their families with community-based adult transition and daytime services to support independent living.

Leadership Education in Neurodevelopmental and Related Disabilities (LEND)

FY 18

(in millions)

FY19 AUCD FY20 Ask FY20
$32 $33.5 $35,245,159 $35,245,000

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

FY19 FY20
$1,506,458,000 $1,556,879,000

Projects of National Significance

FY 18

(in millions)

FY19 AUCD FY20 Ask FY20
$12 $12 $14 $12.25

Additional Programs of Note

AUCD works in a variety of efforts to support diverse appropriation priorities that touch the lives of people with disabilities, including:

Healthcare Extenders:

  • The package includes a 5-month reauthorization of the Money Follows the Person (MFP) and Spousal Impoverishment through May 22, 2020. This means that permanent reauthorization remains an option, which would not have been the case had they done a 2- or 3-year extension. We expect Congress to pass a healthcare extenders package as part of a larger healthcare, drug pricing, and surprise medical billing package in May, to include MFP, HCBS Spousal Impoverishment protections, and several other extenders.
  • The Patient-Centered Outcomes Research Institute (PCORI) was reauthorized for 10 years and included a positive change for our community – the addition of intellectual and developmental disabilities (IDD) as an explicit priority for research. Since PCORI’s creation, AUCD has been actively engaged in ensuring that PCORI identified people with disabilities as a population experiencing disparities, therefore prioritizing research to improve their care. This provision will ensure that merit reviewers specifically prioritize funding for projects related to IDD. We are excited to work with PCORI to bring together stakeholders early in 2020 to identify the most important and useful research questions that they should be funding related to IDD.

Healthcare Taxes:

  • The agreement repeals the excise tax on high-cost health plans, or the "Cadillac tax," which was one of the Affordable Care Act’s (ACA) major cost-control elements. There are some legitimate concerns about the tax as it was designed, yet repealing the Cadillac tax creates expected reduction in revenues by hundreds of billions of dollars over the next ten years.
  • The agreement provides two years of additional Medicaid funding for Puerto Rico and the other territories, which is short of the four years of funding that lawmakers had previously agreed to on a bipartisan basis.

Developmental Disabilities Act:

Developmental Disability Councils

FY19

(in millions)

FY20
$76 $78

Protection and Advocacy

FY19

(in millions)

FY20
$40.7 $40.784

Education:

Early Intervention Programs (Part C)

FY19 FY20
$201,079,000 $201,079,000

Individuals with Disabilities Education Action (Part B)

FY19 FY20
$12,364,392 $12,764,392

Postsecondary Program for Students with Intellectual Disabilities

FY19

(in millions)

FY20
$11.8 $11.8

Workforce Innovation and Opportunity Act:

Independent Living Programs

FY19 FY20
$116,183,000 $116,183,000

National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)

FY19 FY20
$108,970,000 $111 970,000

Assistive Technology Programs

FY19

(in millions)

FY20
$36 $37

Office of Disability Employment Policy

FY19 FY20
$38,203,000 $38,500,000

Health Resources and Services Administration:

Maternal and Child Health Block Grant

FY19 FY20
$677,700,00 $687,700,000

National Center on Birth Defects and Developmental Disabilities:

Disability & Health

FY19

(in millions)

FY20
$30 $33

Autism

FY19

(in millions)

FY20
$23.1 $23.1

Health and Development for People with Disabilities

FY19

(in millions)

FY20
$62.66 $67.66

Neonatal Abstinence Syndrome

FY19

(in millions)

FY20
$2 $2.5

Disability Policy News December 16, 2019

December 16, 2019 | Vol. MMXIX, Issue 49
Medicaid

The Senate included permanent renewal of Money Follows the Person (MFP) and Spousal Impoverishment in a bipartisan drug pricing proposal announced last week by Senators Chuck Grassley (R-IA) and Ron Wyden (D-OR). While initial negotiations for the Grassley Wyden bill are beginning, it is likely negotiations for it will continue through the spring. Agreements between the House and Senate will be needed on some of the larger pharmacy provisions. House and Senate leaders are working on several health care extenders that are expected to be included in the December 20th appropriations package. We will be hosting a National Call-In Day for permanent MFP and Spousal TODAY!

Plain Language:

  • This bill would make Money Follows the Person and Protections against Spousal Impoverishment permanent.

What this means to you:

  • The spousal impoverishment protections allow couples to stay together in their home while one person receives Medicaid home and community-based services (HCBS). The Money Follows the Person Program (MFP) helps people with disabilities and older adults move from institutions and nursing homes back to their homes and communities. Both are set to expire at the end of the year.

Action Steps:

  • Sample call/email: My name is [your full name], and I am from [city]. I’m [calling/writing] to ask the [Senator/Representative] to permanently authorize the Medicaid HCBS spousal impoverishment protections and the Money Follows the Person Program. It is time for Congress to act before these provisions expire on December 31, 2019! United States Capitol switchboard: (202) 224-3121
  • Sample posts:
  • The protections that allow couples to stay together in their home while one person receives home and community-based services through #Medicaid are set to expire December 31. Tell Congress to make these protections permanent. #HCBS. https://bit.ly/35eo8Fr
  • There’s no place like home. Lend your voice to support older adults & people with disabilities! Urge Congress to permanently reauthorize the Money Follows the Person Program. Then there will be no end date to helping people transition to their homes from facilities. #FundMFP

Disability Policy News December 9, 2019

December 9, 2019 | Vol. MMXIX, Issue 48
Healthcare

Senate Finance Committee Chairman Chuck Grassley (R-Iowa) and Ranking Member Ron Wyden (D-Ore.) released an updated version of their bipartisan Prescription Drug Pricing Reduction Act of 2019 on Friday, December 6th, and announced an agreement to fund expiring health care programs. Of note, the agreement includes:

  • A permanent extension Money Follows the Person Rebalancing Demonstration
  • Permanent protection for Medicaid recipients of Home and Community-Based Services against spousal impoverishment
  • Extensions of the Patient-Centered Outcomes Research Institute (PCORI)Trust Fund with an increased level of mandatory appropriations through fiscal year 2029
  • Extension of Medicaid funding for the territories with increased funding for four years; includes program integrity improvements for Puerto Rico’s Medicaid program

The package still must be voted on in the House and Senate. Votes are expected this month.

Plain Language:

  • This bill would make Money Follows the Person and Protections against spousal impoverishment permanent.

What this means to you:

  • Extension of the expiring programs ensures access to needed systems for people with disabilities.

Action Step:

  • Contact your members of Congress and share how important the agreements on the expiring health care programs are to you.
  • Additional information about Money Follows the Person can be found here.

Disability Policy News December 2, 2019

December 2, 2019 | Vol. MMXIX, Issue 47
Did you talk politics over the holiday? Need to start getting more informed for your primary? We’ve got you covered.

Campaign 2020

We are now about three months away (Feb 3, 2020) from the Iowa caucus, which kicks off the presidential primary season and is a strong indicator for how candidates will do later in the campaign. Presidential candidates have been releasing various policy plans that impact the disability community. Some have specific disability plans, while others have disability embedded throughout other plans. Stay informed with each. What’s in it? What’s not? What could this mean to you?

Democratic Candidates:

· Joe’s Plan for Older Americans

· Fighting for an Accessible & Inclusive America

· Dignity, Access, and Belonging: A New Era of Inclusion for People with Disabilities

· Healing and Belonging in America: A Plan to Improve Mental Health Care and Combat Addiction

· Dignity and Security in Retirement

· Kamala’s Commitment to Full Inclusion and Civil Rights for People with Disabilities

· Kamala’s Plan to Provide Mental Health Care on Demand

· Fight for Disability Rights

· The Right to a Secure Retirement

· Equality for People with Disabilities

· Economic Security and Opportunity

· Amy’s Plan to Combat Addiction and Prioritize Mental Health

· Plan for Seniors

· Equality for People with Disabilities

· Invest in America’s Mental Health

· Fund Autism Intervention

· Invest in the needs of the American people

· Protect Social Security

· Plan to Reward Hard Work

· Plan for Mental Health

· Disability Justice

· Social Security

Republican Candidates:

· Social Programs

Presidential Candidates Surveys on Disability

AUCD developed a comprehensive disability policy explainer on the issues. You can view the factsheet here.

Twenty-four New Hampshire-based organizations joined together and requested that each campaign answer five disability-related questions. You can view candidate responses here.

AAPD, REV UP and the National Council on Independent Living (NCIL) have been working on a Presidential candidates questionnaire.The questionnaire collects responses on disability issues. You can view responses here.

AAPD and REV UP Texas will be hosting a nonpartisan Presidential forum on disability issues on January 13, 2020, in Austin, TX. Learn more here.

The Center for American Progress developed 10 disability policy questions every presidential candidate should answer. You can view the questions here.

Congressional Openings

There continue to be many special elections for the remainder of the 116th Congress:

  • Rep. Elijah Cummings’ seat (MD-7th District) will be filled by a special primary on February 4 and special general election on April 28, 2020.
  • Rep. Sean Duffy’s seat (WI-7th District) will be filled by a special primary held February 18 and special general election on May 12, 2020.
  • Rep. Chris Collins’ seat (NY-27th District) will be filled by a special election likely April 28, 2020.
  • Rep. Katie Hill’s seat (CA-25th District) will be filled by a special primary on March 3 and a runoff election on May 12, 2020.

The list of retirements and resignations continues to grow. Members will complete this term in the 116th Congress. Elections for these seats will occur November 2020.

  • Rep. Francis Rooney (R-FL-19th District) is retiring.
  • Rep. Greg Walden (R-OR-2nd District) is retiring. He served as the lead Republican on the Energy and Commerce Committee, the committee with jurisdiction over Autism CARES.
  • Senator John McCain’s (R-AZ) seat – he passed away in 2018 – has been filled by Governor’s appointment. A special election will be held in November 2020 to complete the rest of the 2017-2022 term.
  • Senator Johnny Isakson (R-GA) is resigning at the end of 2019 due to health issues. GA Governor will appoint a replacement who will serve until the November 2020 election.

Election Watch 2020

In addition to the Presidential race and every House of Representative’s seat being on the ballot, there are 36 of 50 Senate seats up in 2020 – a mix of standard cycles and special elections. Generally, the races are viewed in three lenses:

Open Seats where the incumbent will not be running again and states will have a new Senator:

State Incumbent
Georgia
(special)
TBD (R)
Kansas Pat Roberts (R)
(retiring)
New Mexico Tom Udall (D)
(retiring)
Tennessee Lamar Alexander
(R)(retiring)
Wyoming Mike Enzi
(R)(retiring)

Competitive Seats, where the incumbent is running, but there is a strong challenger and a chance they will lose:

State Incumbent
Alabama Doug Jones (D)
Arizona
(special)
Martha McSally (R)
Colorado Cory Gardner (R)
Delaware Chris Coons (D)
Maine Susan Collins (R)
North Carolina Thom Tillis (R)

Safe seats, where the incumbent is running and is unlikely to lose:

State Incumbent
Alaska Dan Sullivan (R)
Arkansas Tom Cotton (R)
Delaware Chris Coons (D)
Georgia David Perdue (R)
Idaho Jim Risch (R)
Illinois Dick Durbin (D)
Iowa Joni Ernst (R)
Kentucky Mitch McConnell (R)
Louisiana Bill Cassidy (R)
Massachusetts Ed Markey (D)
Michigan Gary Peters (D)
Minnesota Tina Smith (D)
Mississippi Cindy Hyde-Smith (R)
Montana Steve Daines (R)
Nebraska Ben Sasse (R)
New Hampshire Jeanne Shaheen (D)
New Jersey Cory Booker (D)
Oklahoma Jim Inhofe (R)
Oregon Jeff Merkley (D)
Rhode Island Jack Reed (D)
South Carolina Lindsey Graham (R)
South Dakota Mike Rounds (R)
Texas John Cornyn (R)
Virginia Mark Warner (D)
West Virginia Shelley Moore Capito (R)

We are still very early in the race and it is likely the view of what is a safe vs. competitive seat will change over time.

Action Steps:

  • If you live in a state with a Senate seat up for election — Alabama, Alaska, Arizona, Arkansas, Colorado, Delaware, Georgia, Idaho, Illinois, Iowa, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Michigan, Minnesota, Mississippi, Montana, Nebraska, New Hampshire ,New Jersey ,New Mexico, North Carolina, Oklahoma, Oregon, Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Virginia ,West Virginia, Wyoming — this election year is an excellent chance to be involved with your Senator. Reach out now and learn about the candidates, educate them on disability issues and build relationships.
  • Educate your network about the race and support others to be registered and to vote.

Register to Vote

Voting is an important right of being a US citizen. It allows people to choose leaders they feel will best represent their needs on the local, state and federal levels. You can make real change by being an educated voter in your community.

Action Steps:

Feedback Survey

Love reading about policy? So do we, but we need your input. Complete this survey to help the AUCD policy team make In Brief the best for our readers.

Action Steps:

AUCD Policy Talk

ICYMI! Read our latest blog post: How Montana Tackles Tech. Share the blog post widely to start a conversation about assistive technology in your state.

Action Steps:

  • As someone interested in disability policy, we ask you to consider writing and submitting a blog post. Read our blog submission guidelines and further details and submit a story today!

Tuesdays with Liz: Neil Romano on the National Council on Disability (NCD)

Chairman of the National Council On Disability (NDC) Neil Romano discusses the role of the Council and its impact on people with disabilities. For more information on NDC, visit www.ndc.gov.

Disability Policy News November 25, 2019

November 25, 2019 | Vol. MMXIX, Issue 46
Next Steps in Policy #AUCD2019

It was fantastic to see so many of you in DC last week at the AUCD Conference, and to have others engage virtually! If you had meetings on the Hill, please take the time to do follow up.

Action Steps:

  • Please send thank you emails for each of the Hill meetings you participated in. Provide a short reminder of who you are and what topics you covered during the meeting (tell them the date you were there). Send links or attachments of any paper materials you shared during the meeting. Answer any questions that you left with. Ask them for an update on any ask you made. Thank them again for their time and the work they do.
  • Amplify your meetings! Post the pictures, tag the offices, and share with others what issues you talked about and encourage them to share their voice.
  • Let us know how your meetings went: What did they say about the issues you raised? What questions are they asking? What were your general impressions?

Autism CARES

The Interagency Autism Coordinating Committee (IACC), which was reauthorized by the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2019, is seeking nominations of individuals to serve as non-federal public members on this committee. The call for nominations will be open from Tuesday, November 19, 2019, through Friday, January 24, 2020.

Action Steps:

  • Use this link for detailed information on requirements and how to submit a nomination.

Budget and Appropriations

The House voted Tuesday on a funding stopgap measure to prevent a government shutdown. On Thursday, the Senate cleared the measure (HR 3055) by a vote of 74-20; the President signed the bill on Thursday afternoon. The continuing resolution (CR) comes as lawmakers continue to disagree over new spending bills, with the largest controversies centered around President Trump’s proposed border wall with Mexico. This will give lawmakers until Dec. 20 to pass final fiscal 2020 appropriations bills.

Employment

The U.S. Commission on Civil Rights (USCCR) held a public briefing, Subminimum Wages: Impacts on the Civil Rights of People with Disabilities, to examine the exemption under the Fair Labor Standards Act (FLSA) – Section 14(c) on Friday November 15th, 2019. The public is invited to submit additional comments.

Action Steps:

  • Learn more by reading subminimumwages; or by mail to: OCRE/Public Comments, U.S. Commission on Civil Rights, 1331 Pennsylvania Ave. NW, Suite 1150, Washington, DC 20425.

Medicaid

AUCD signed on to a letter calling on Congress to restore Medicaid eligibility for individuals from the Compact of Freely Associated States (COFA) living in the U.S. This injustice has prevented COFA citizens in the U.S. from receiving the health care they need.

Action Steps:

The Center for Medicaid & CHIP Services (CMCS) has worked with stakeholders to identify two Core Sets of health care quality measures that can be used to assess the quality of health care provided to children and adults enrolled in Medicaid and CHIP. The Core Sets are tools states can use to monitor and improve the quality of health care provided to Medicaid and CHIP beneficiaries.

For the 2020 update, CMCS will add measures to the Adult Core Set, which includes the National Core Indicators (NCI) Survey. This survey assesses the experience and outcomes of individuals with intellectual and developmental disabilities and their families. The addition of these measures will allow CMCS and states to expand the measurement of quality of care for adults in Medicaid in long-term services and supports (LTSS) and behavioral health. There has been a critical measurement gap in the area of LTSS, including home and community-based services, since the Adult Core Set was established. The addition of the NCI survey would start to address this gap area.

Action Step:

  • Read the press release here.

Healthcare

Senators Mark Warner (D-VA), Bill Cassidy (R-LA), Chris Van Hollen (D-MD), and Shelley Moore Capito (R-WV) introduced the "Patient-Centered Outcomes Research Institute Reauthorization Act" (S. 2897). The bill extends PCORI’s authorization for another 10 years – through FY2029 – and reauthorizes all three funding sources of the PCORI Trust Fund. On Tuesday, Congress passed another CR and the PCORI Trust Fund was extended through December 20 without new funding for FY2020. This leaves four weeks to negotiate the 12 annual spending bills, as well as other health-related legislation, including PCORI reauthorization that will likely be attached to the final funding package.

Action Steps:

  • Continue to reach out to Senate offices in support of a long-term reauthorization of PCORI with the continuation of its current funding streams. Please find a link to an alert here.

Feedback Survey

Love reading about policy? So do we, but we need your input. Complete this survey to help the AUCD policy team make InBrief the best for our readers.

Action Steps:

AUCD Policy Talk

Just posted! Read our latest blog post: How Montana Tackles Tech. Share the blog post widely to start a conversation about assistive technology in your state.

Action Steps:

  • As someone interested in disability policy, we ask you to consider writing and submitting a blog post. Read our blog submission guidelines and further details and submit a story today!

Tuesdays with Liz: Live from Georgetown University

Liz Weintraub interviewed Claudia Gordon, who is the first Deaf African American female lawyer to graduate from law school in the United States. Claudia has dedicated her professional career to ensuring the rights of people with disabilities. This episode is sponsored by GUCEDD and GU Program for Disability Studies

Tuesdays with Liz – Live from Georgetown University – Interview from GU Center for Child & Human Dev on Vimeo.

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Disability Policy News November 18, 2019

November 18, 2019 | Vol. MMXIX, Issue 45
#AUCD2019 is upon us! Yesterday, the Public Policy Committee met in person to discuss the latest federal policy updates. Whether you are here in DC or at home in your states, YOU can make an impact by contacting your members of Congress. Learn how to contact your members and choose from the below policy areas to amplify.

Contacting Congress

Call, meet (in DC or in your home district offices), email, tweet/facebook your members of Congress gives you the opportunity, as a voter, to voice your concerns and let your members know how their vote impacts the lives of those they want to best represent. Use our tip sheet to help you start Contacting Congress and check out this Tuesdays with Liz episode:

Autism CARES

The Autism CARES Act of 2019 was signed into law on September 30, 2019.This secures five-year reauthorizations for CARES programs, including:

  • Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Training Programs
  • Developmental Behavioral Pediatrics (DBP) Training Programs
  • Learn the Signs. Act Early. (LTSAE)
  • The Autism and Developmental Disabilities Monitoring (ADDM) Network

The successful passage reflects your efforts to educate members about the bill, the work it supports and the needs in your state.

Action Items:

  • Thank each member of the Congressional delegation from your state. This is a chance to build the relationship, remind them how CARES supports your work and offer to be a resource on other disability issues.
  • Sample post: #AutismCARES provides critically needed research, #LEND training, and system improvement for families with #autism and related #disabilities. I am grateful for its passage! Thank you @________ for co-sponsoring this important legislation for families in _____ and beyond! @AUCDnews

Read AUCD’s press release and use our E-Learning Module: Autism CARES Act 101 to educate others on the impact CARES will have over the next five years.

  • Authorization is separate from appropriations. While CARES programs are authorized for 5 years, funds need to be appropriated to support the programs each year. Share with members of Congress about your work and impact.
  • Is your member a part of the Autism Caucus? If not, ask them to join today!

Transformation to Competitive Employment

The Transformation to Competitive Employment Act (S.260 and H. 873) will assist businesses in adapting their program models to support the transition of individuals with disabilities from segregated work environments to competitive, integrated employment. This law aims phase out use of 14(c) certificates, originally issued under the FSLA.

  • Learn more about the act here.
  • Find out if your members are co-sponsors: Senators and Representatives
  • Not a co-sponsor? Call, email, or tweet your Members of Congress and tell them why their support of the Transformation to Competitive Employment is so important educating them to be a co-sponsor.

o Sample call/email: My name is [your full name], and I am from [city]. I’m [calling/writing] to ask the [Senator/Representative] to support the Transformation to Competitive Employment Act. This bill would make sure that people with disabilities get to work in our communities for fair pay. With the right supports, people with all kinds of disabilities and support needs can succeed in integrated employment, and TCEA would give states and service providers the resources they need to provide those supports. Can I count on the [Senator/Representative] to support the Transformation to Competitive Employment Act? United States Capitol switchboard: (202) 224-3121

o Sample post: @________, we/I need your support of the Transformation to Competitive Employment Act to end subminimum wage! @AUCDnews #RealWork4RealPay

  • A co-sponsor? Call, email, or facebook/tweet your Members of Congress to thank them for being a co-sponsor.
  • Sample call/email: My name is [your full name], and I am from [city]. I’m [calling/writing] to thank the [Senator/Representative] for supporting the Transformation to Competitive Employment Act. Your support will make sure that people with disabilities get to work in our communities for fair pay. With the right supports, people with all kinds of disabilities and support needs can succeed in integrated employment, and TCEA would give states and service providers the resources they need to provide those supports. Thank you for co-sponsor and urge your colleagues to support today! United States Capitol switchboard: (202) 224-3121
  • Sample post: @________, thank you for your support of the Transformation to Competitive Employment Act to end subminimum wage! @AUCDnews #RealWork4RealPay

ABLE Age Adjustment Act

This December will mark the 5th anniversary of the passage of the Achieving a Better Life Experience (ABLE) Act, which created tax-free savings accounts for people with disabilities who have a disability before age 26. Since 2014, over 50,000 individuals have opened ABLE accounts. Unfortunately, millions of people with disabilities aren’t eligible for ABLE accounts because they did not acquire their disability before age 26. So as we are celebrating this anniversary, we are urging Congress to pass the ABLE Age Adjustment Act (S. 651, H.R. 1814). The ABLE Age Adjustment Act would make six million more people with disabilities eligible to open an ABLE account. It would also greatly enhance the sustainability of all ABLE programs nationwide.

  • Learn more about the act here.
  • Find out if your members are co-sponsors: Senators and Representatives
  • Not a co-sponsor? Call, email, or tweet your Members of Congress and tell them why their support of the ABLE Age Adjustment Act is so important educating them to be a co-sponsor.
  • Sample call/email: My name is [your full name], and I am from [city]. I’m [calling/writing] to ask the [Senator/Representative] to support the ABLE Age Adjustment Act. This bill would expand access to more people with disabilities to be able to open an ABLE account. With an account, people with all kinds of disabilities are able to save money without jeopardizing access to services they need to live in their communities. Can I count on the [Senator/Representative] to support the ABLE Age Adjustment Act? United States Capitol switchboard: (202) 224-3121
  • Sample post: ABLE Accounts help PwD save money and keep their benefits, but right now not everyone with a disability can get an ABLE account! @________ we need your support today! @AUCDnews #ABLEAgeNow
  • A co-sponsor? Call, email, or facebook/tweet your Members of Congress to thank them for being a co-sponsor.

o Sample call/email: My name is [your full name], and I am from [city]. I’m [calling/writing] to thank the [Senator/Representative] for supporting the ABLE Age Adjustment Act. Your support will help expand access to more people with disabilities to be able to open an ABLE account. With an account, people with all kinds of disabilities are able to save money without jeopardizing access to services they need to live in their communities. Thank you for co-sponsor and urge your colleagues to support today!

· Sample post: ABLE Accounts help PwD save money and keep their benefits, but right now not everyone with a disability can get an ABLE account! Thank you @________ for your support! @AUCDnews #ABLEAgeNow

HCBS Infrastructure Act

There is a growing need to assist states with improving their home and community-based services (HCBS) infrastructure. Key priorities include strengthening housing, transportation, employment, workforce and caregiver supports in communities across the country that address social determinants of health (SDOH), so that persons with disabilities and older adults with disabilities are served where they wish to be served. A working policy proposal has been developed by AUCD and the Disability and Aging Collaborative, a coalition of more than 40 national organizations, with additional input provided by associations representing states and other key informants.

  • Learn more about the act here.
  • Co-sponsors are needed to introduce both in the House and Senate. Call, email, or tweet your Members of Congress and tell them why their support of the HCBS Infrastructure Act is so important educating them to be a co-sponsor.
  • Sample call/email: My name is [your full name], and I am from [city]. I’m [calling/writing] to ask the [Senator/Representative] to support a new bill called the HCBS Infrastructure Act. This bill would strengthen housing, transportation, employment, workforce and caregiver supports in communities across the country that address social determinants of health (SDOH), so that persons with disabilities and older adults with disabilities are served where they wish to be served. Can I count on the [Senator/Representative] to support the HCBS Infrastructure Act? United States Capitol switchboard: (202) 224-3121
  • Sample post: PwD want and have the right to live in their community. #LTSS and #HCBS are needed to support people. @________ we need your support of an HCBS Infrastructure Act! @AUCDnews

Wish you were here at #AUCD2019?

Follow along with all things policy at the conference by following the policy team on Twitter!

Feedback Survey

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Action Steps:

AUCD Policy Talk

Read our latest blog post: What is a QALY? Are you impacted by QALYs? Does the work in your state connect to this policy? Share our blog post widely to start a conversation.

Action Steps:

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Disability Policy News November 4, 2019

November 4, 2019 | Vol. MMXIX, Issue 43
Census 2020

The U.S. Census Bureau is gearing up for the 2020 Census. Recently released is their accessibility guide called "The 2020 Census is Accessible for Everyone." The Census Bureau says they are making sure that however people choose to respond – online, by phone or by mail – the census is accessible for everyone.

Action Steps:

  • Read the new factsheet here.
  • Find resources about Census 2020 from our friends at NDRN.

Healthcare

The House Committees on Energy and Commerce, Ways and Means, and Education and Labor have considered the Lower Drug Costs Now Act of 2019 (H.R.3). This bill requires the Centers for Medicare and Medicaid Services to negotiate prices on insulin and at least 25 drugs each year. These negotiated prices would apply to all Medicare Advantage and Medicare Part D plans. Additionally, it creates an out-of-pocket limit of $2,000 for Medicare Part D plans. During the markup, provisions were added to ensure that the value of drugs is not measured based on quality-adjusted life years (QALYs), which are based on the premise that the value of one year of the life of a person with a disability is less than the value of one year of the life of a person without a disability.

Action Steps:

  • Thank your members for ensure damaging QALYS were not included in this legislation.

Senator Hirono (D-HI) and Representative Cardenas (D-CA) reintroduced the Covering our FAS Allies (COFA) Act (S. 2218, H.R. 4821) to restore Medicaid eligibility to citizens residing in the U.S. under the terms of the Compacts of Free Association (COFA). Under the Compacts, COFA citizens are able to travel to, live and work in the U.S. in exchange for the U.S. military’s use and strategic positioning in the Freely Associated States of the Marshall Islands, the Federated States of Micronesia, and Palau. Unfortunately, with the passage of welfare reform in 1996, Congress removed eligibility for COFA citizens living in the U.S. to participate in many federal benefits programs, including Medicaid. This exclusion has led to about 61,000 Pacific Islanders in the U.S. lacking access to basic health care access.

Actions Steps:

Lifespan Respite Care Act

The Lifespan Respite Care Reauthorization Act of 2019 (S.995) was marked up in the full HELP Committee last week. In the manager’s amendment, the authorization levels have been changed to $10 million annually through FY 2024 ($50 million over 5 years). This is considerably less than as introduced and the House-passed bill ($200 million over five years) and even less than reauthorization bills introduced in past Congresses ($75 million over five years).

Action Steps:

  • Learn more about the Lifespan Respite Care Act here.
  • Share your support and concerns with your Senators.
  • United States Capitol switchboard: (202) 224-3121

Higher Education

Improving Access to Higher Education Act of 2019 (H.R. 4643) was introduced by Rep. Mark DeSaulnier (D-CA) on October 11, 2019. This bill will improve college access and completion for all students with disabilities. The College Affordability Act (H.R. 4674) was introduced on October 15, 2019, by Rep. Bobby Scott (D-VA), Chair of the House Education and Labor Committee. This bill is a comprehensive reauthorization of the Higher Education Act (HEA) and also contains a number of provisions important to students with disabilities. Both bills include most of the Inclusive Higher Education Committee recommendations. The House Education and Labor Committee held a mark up of the College Affordability Act last week with no impact on the key provisions to the disability community. It passed committee and now heads to the House floor. It will likely pass by the end of the year but the prospect of a comprehensive HEA reauthorization remains uncertain in the Senate.

Action Steps:

  • If your center has a comprehensive transition program for students with IDD, contact your members of Congress about the importance of your program for students to access higher education. Share that reauthorizing the Higher Education Act to improve postsecondary opportunities for students with IDD is critical to your state and programs.

Budget and Appropriations

We are three weeks away from the current stop-gap continuing resolution (CR) expiring on November 21st. Senators voted on a bipartisan spending package (HR 3055) containing four of the 12 fiscal 2020 spending measures. A vote on a second multi-bill package (HR 2740) that includes the Defense (and Labor, HHS, and Ed – important areas for the disability community) spending measure was held but had not advanced due to partisan disagreements over funding for a border wall. This would likely require Congress to pass a new CR. Under a CR, agencies can’t start new projects or increase buying rates on long-term contracts.

Action Step:

  • Learn more about the budget and appropriations process.
  • This is an opportunity to contact your members of Congress about your center’s appropriations request. Share with them about the work of your center and the need for continued federal funding to make an impact in your state.

Congressional Openings

Rep. Katie Hill (D-CA) announced her resignation from Congress amid an ethics investigation over an alleged relationship with a staffer. State law gives the governor up to two weeks after a vacancy opens to set the date for a special election. Likely to occur is a special election that would coincide with the state’s March 3rd primary, but the election could come as late as early May. The winner of the election would serve out the remainder of Hill’s term. The top two candidates in the primary would face off again in November 2020 to serve a full term. George Papadopoulos, the former Trump adviser, filed paperwork with the Federal Election Commission to run to fill the seat vacated by Rep. Hill.

Rep. Greg Walden (R-OR) announced his retirement at the end of the current term. He served as the lead Republican on the Energy and Commerce Committee, the committee with jurisdiction over Autism CARES.

These announcements add to the growing list of vacancies in Congress:

  • Rep. Elijah Cummings’ seat (MD-7th District) will be filled by a special primary on February 4 and special general election on April 28, 2020.
  • Rep. Sean Duffy’s seat (WI–7th District will be filled by a special primary held February 18 and special general election on May 12, 2020.
  • Rep. Chris Collins’ seat (NY–27th District) will be filled by a special election likely in April 2020.
  • Rep. Francis Rooney (R-FL) is retiring following the 116th Congress.
  • Senator Johnny Isakson (R-GA) is resigning at the end of 2019 due to health issues.

Action Steps:

  • Centers in CA, OR, FL, MD, WI, GA and NY have an opportunity to engage with candidates during the upcoming elections on disability issues.
  • Make sure you are registered so you can vote.

Immigration

Judge Michael Simon of the U.S. District Court in Oregon issued a temporary restraining ordering blocking the Trump administration from enforcing a plan to deny visas to would-be immigrants based on their inability to show they could pay for health insurance or medical costs in the U.S.

Campaign 2020

Pete Buttigieg is the latest candidate to release a Disability Plan: Dignity, Access, and Belonging – A New Era of Inclusion for People with Disabilities.

Former Congressman Beto O’Rourke of Texas announced on November 1 he is dropping out of the presidential race.

The next (fifth) Democratic debate will be co-hosted by MSNBC and the Washington Post on November 20 in Georgia. While the format is still to be announced for the November debate, NBC has said it will be taking user-submitted questions for the evening.

Action Steps:

  • Want to hear about candidates disability policy agendas during the next debate? Submit a question here.

Feedback Survey

Love reading about policy? So do we, but we need your input. Complete this survey to help the AUCD policy team make InBrief the best for our readers.

Action Steps:

Policy at AUCD’s Annual Conference

The AUCD policy team is excited to see you in a month at our Annual Conference! Don’t forget to schedule your Hill Visits for Wednesday, November 20th.

Action Steps:

  • Check out the policy related sessions this year.
  • Let us know what Hill visits you have. By completing this survey, we will be able to prepare packets for you to take to your meetings.

AUCD Policy Talk:

ICYMI: Read our latest blog post: Guardianship: Clashing Views from Self-Advocates and Family Leaders. As someone interested in disability policy, we ask you to consider writing and submitting a blog post.

Action Steps: