Disability Policy News July 9, 2018

July 9, 2018 | Vol. XV, Issue 169
Budget and Appropriations

Concerning Language in House Report

The House Report included concerning language stating "as a result of enactment of the ADA and the Supreme Court decision in Olmstead, there has been a national trend towards deinstitutionalization…" The report went on to say because of this "individuals residing in institution-like facilities have been pressured to move into the community against their wishes" and that the Committee is "concerned about the adequacy of community-based housing." In addition, the Committee expressed concern regarding "higher rates of abuse and mortality in community settings and the adequacy of opportunities for residents to express views and preferences."

AUCD is in the process of gathering information in order to work with Members on updating this language to more accurately reflect the current state of inclusion and safety of people with disabilities living in the community.

· Action Step: Please send rrodgers suggested citations to counter the assertion of higher rates of abuse and mortality. Advocates can also share personal stories about the support you are receiving in your community and the importance of comprehensive person-centered planning.

Health Care

Home Health

On July 2, the Centers for Medicare & Medicaid Services (CMS) proposed significant changes to the Home Health Prospective Payment System. In short, CMS is considering paying home health agencies for remote patient monitoring (which involves the use of digital tools to collect health data such as vital signs, weight, blood pressure, blood sugar, blood oxygen levels, heart rate, electrocardiograms, etc.).

Specifically, CMS is proposing changes to "improve access to solutions via remote patient monitoring technology, and to update the payment model for home health care." As required by the Bipartisan Budget Act of 2018, this proposed rule would also implement a new Patient-Driven Groupings Model (PDGM) for home health payments, which would begin January 2020. The current system pays for 60-days of care and relies on the number of therapy visits a patient receives to determine payment. The PDGM would eliminate the use of "therapy thresholds" in determining payment and changes the unit of payment to 30-day periods of care.

Some groups are concerned that the rule invites fraudulent behavior, negates the importance of promoting independence, and uses cost reports that lack accuracy. AUCD has begun reviewing this proposed rule.

· Action Step: Public comments are accepted through August 31, 2018. To assist stakeholders in commenting on this proposed payment change CMS has shared several resources: a provider-level impact estimate file can be downloaded, as well as a grouper tool that can be used to understand how the proposed payment grouping parameters would be used to determine case-mix assignments that are part of the payment calculation.

Affordable Care Act

On July 7, CMS announced that it is halting payments required under the ACA’s "risk adjustment" program, drawing swift protest from the health insurance industry. Risk adjustment provides financial support for insurance companies to cover consumers who require significant, sometimes expensive, medical care by pooling risk among all insurers to expand access to care for high-risk consumers (learn more here). Advocates including AUCD are concerned that halting risk adjustment will undermine access to affordable coverage, particularly for those who need medical care the most.

· Action Step: Contact your Members of Congress to advocate for continued implementation of the ACA as intended to ensure access to care for all.

Civil Rights

Department of Justice

On July 3, Attorney General Jeff Sessions announced that he is rescinding (getting rid of) 24 guidance documents that were "unnecessary, outdated, inconsistent with existing law, or otherwise improper." Some of these documents provided guidance on juveniles in adult jails, federal protection against national origin discrimination, fair employment, language assistance, diversity in post-secondary education, avoiding racial isolation in elementary and secondary schools.

Most concerning to many advocates were seven Obama administration guidance statements from 2011 to 2016 regarding affirmative action (a policy in which an individual’s color, race, sex, religion or national origin are taken into account to increase opportunities provided to underrepresented groups). The Trump administration stated that colleges/universities and public schools should not consider race in admissions. Secretary of Education Betsy DeVos stated "the Supreme Court has determined what affirmative action policies are Constitutional, and the Court’s written decisions are the best guide for navigating this complex issue… Schools should continue to offer equal opportunities for all students while abiding by the law."

· Action Step: Advocate within your state and communities for policies support diversity and avoid racial isolation.

Work Requirements – Native Populations

Six days after inviting states to submit Section 1115 Medicaid work demonstrations and five days after approving Kentucky’s proposal last January, CMS notified Indian tribal leaders that federal civil rights laws that bar discrimination based on race or national origin prevented the agency from exempting the American Indian and Alaska Native population from work requirements. Four months later, CMS Administrator Seema Verma signaled a partial reversal, suggesting that states could exempt the Indian population at their option: "We believe we can give states flexibility and discretion to implement the community engagement requirements with respect to local tribal members."

Many advocates are concerned that CMS has failed to recognize the interplay between Medicaid waivers and the federal laws safeguarding Indians’ health. This relationship is grounded in what is known as the U.S. government’s "trust responsibility," one that the Supreme Court has recognized, which ensures special benefits to Indian tribes and tribal members in accordance with treaties or laws. Advocates argue that choosing whether to honor federal commitments to Indian health is not a state option. The Common Wealth Fund states, "Should a Medicaid work requirement result in a mass loss of eligibility among American Indians, it would likely have spillover effects on the IHS, which relies on Medicaid revenue. The potential injury that could come from Medicaid work requirements cannot be measured only in terms of the numbers likely to lose coverage, but also the viability of the health care system on which a large part of the American Indian and Native Alaskan population depends."

· Action Step: Educate your Medicaid agency about 1) the historical purpose of the "trust responsibility;" 2) the importance of the Indian Health Care Improvement Act, which strengthened health care under the Indian Health Service (IHS); 3) the significance of the 1976 amendment to Medicaid, which ensures that the federal government assumes 100 percent of the costs from IHS clinics and hospitals; and 4) Medicaid being a central part of the federal government’s Indian health policy, representing 13 percent of total IHS program operations and providing care to 50 percent of Indian and tribal children.

Employment & Education

The Association of University Centers on Disabilities (AUCD) and National Down Syndrome Congress (NDSC) released a comprehensive report – Addressing the Policy Tangle: Students with Intellectual Disability and the Path to Postsecondary Education, Employment and Community Living – on implementation problems with using federal IDEA and vocational rehabilitation (VR) funding for postsecondary students with intellectual disabilities (ID).

· Action Step: Local, state, and national organizations are encouraged to sign on to the Inclusive Higher Education Committee (IHEC) letter to Education Secretary DeVos.

Electric Shock Devices in School

Today AUCD made a public statement strongly opposing the decision to continue allowing the use of electric shock in schools. See previous In Brief for background.

Money Follows the Person (MFP)

AUCD signed on to a letter drafted by the Aging and Disability Advocacy Work Group urging action on the reauthorization of the MFP program. The letter was sent to Chairman Walden and Ranking Member Pallone of the House Energy and Commerce Committee, and Chairman Burgess and Ranking Member Green of the Health Subcommittee on June 22, 2018.

· Action Step: Continue to educate your Members on the importance of MFP.

Environmental Protection Agency (EPA)

On July 6, Scott Pruitt resigned from his position leading the EPA, following months of high-profile controversies regarding his spending, ethics, and management at the agency. Andrew Wheeler, who the Senate confirmed in April to be deputy administrator at the EPA, will become acting administrator.

Tuesdays with Liz: Disability Policy for All

Supreme Court decisions affect EVERYONE, which is why Liz thought this week, in response to President Trump’s nomination of a new Justice, it would be helpful to look back at her interview with AUCD Executive Director Andy Imparato from the last time a Court spot needed to be filled. Also see previous In Brief for background on Justice Anthony Kennedy’s retirement.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

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Disability Policy News July 2, 2018

July 2, 2018 | Vol. XV, Issue 168
Independence Day Special!

Congressional Recess

Members of both the House and Senate are on recess until they return for legislative business July 9th, which means your senators and representative will be home and more accessible.

Action Steps:

· Meet with your members of Congress or their staff, or invite them to visit you.

· Connect with them at a public event and ask a question.

· Submit an op-ed to your local paper.

· Use Facebook or Twitter to engage your members of Congress.

Budget and Appropriations

The House Appropriations full committee markup has been postponed until after the July recess citing scheduling conflicts. The draft report for the House FY19 Labor-HHS-Education appropriations bill is available on the House Appropriations Committee website. HRSA, which includes LEND, begins on page 19. The vast majority of disability program saw no change from FY18.

On June 26, the Senate Subcommittee on Labor, Health and Human Services, and Education (Labor-HHS) Appropriations approved the FY19 funding bill. Then on June 28, the full Senate Committee on Appropriations advanced the FY19 funding bill by a vote of 30-1 with no debate. The full Committee approved the measure that contains $179.3 billion in discretionary funding (what does Discretionary mean?), an increase of $2.2billion above FY18; HHS received an additional $2.3 billion; Education $541 million increase; NIH $2 billion increase; Labor funding is cut $92 million below FY18. See the bill (pg. 48 for HRSA), highlights, and report (pg. 44 and 242) as well as the American Public Health Association statement regarding emergency preparedness, maternal mortality, and opioids here.

Health Care

On June 25, the House passed a bill (H.R. 6042) by voice vote that calls for a one-year delay in implementation of electronic visit verification (EVV) systems for Medicaid-funded personal care services. If passed by the Senate, this bill would give states until January 2020 to comply with federal EVV requirements and require the Centers for Medicare & Medicaid Services (CMS) to engage with stakeholders on the implementation process.

· Action Step: Connect with your Senators about the value of the delay and challenges states face without the delay.

Public Health

On June 27, the Subcommittee on Health voted on a number of bills, which all passed by a voice vote; however, one amendment offered by Pallone (D-NJ) regarding "sense of Congress on Family Separation" failed 11-18 (read amendment here).

  1. H.R. 959 the Title VIII Nursing Workforce Reauthorization Act introduced by Reps. Joyce and Matsui, would strengthen nursing workforce by reauthorizing several programs that support the recruitment, training, and retention of nursing professionals.
  2. H.R. 1676, the Palliative Care and Hospice Education and Training Act, introduced by Reps. Engel, Reed, and Carter, would improve education, training, and research into palliative care and hospice care.
  3. H.R. 3728, the Educating Medical Professionals and Optimizing Workforce Efficiency and Readiness (EMPOWER) Act, introduced by Reps. Burgess, Schakowsky, and Bucshon would reauthorize programs funded under Title VII of the Public Health Service Act.
  4. H.R. __, Pandemic and All-Hazards Preparedness Reauthorization Act of 2018 authored by Representatives Brooks and Eshoo, which supports critical emergency preparedness and response programs.

Civil Rights

Update on DREAMers/DACA Bills

The Border Security and immigration Act (HR 6163) did not pass (vote: 310 against, 121 for). All those in favor of the bill were republican. 112 republicans and 189 democrats voted against the measure. See June 18 and June 25 editions of In Brief for background.

Update on Children and Families

On June 26, the Committee on Finance held a hearing Prescription Drug Affordability and Innovation: Addressing Challenges in Today’s Market. Alex Azar, Secretary of HHS, was the only witness. During the hearing, Senator Casey (D-PA) questioned Azar regarding the separation of children from families at our US border. Casey stated "of the organizations that live their lives to give us information about the effect of policy like this on children – whether it is Academy of Pediatrics, American Psychiatric Association, and for children and individuals with disabilities, the Association of University Centers on Disabilities -Did you or anyone at HHS or the justice department ever consult with any of these organizations?" Azar responded that he is not aware of any engagement with these groups and affirmed that "it is not a desirable situation to have children separated from their parents, listen at the upfront, if the parents did not bring them across illegally this would never happen". Azar also stated that HHS "want the reunification, we want these kids to be well cared for". Pallone (D-NJ) later sent a letter to Azar emphasizing that he personally met with parents who assert that they do not know where their children are.

Family Planning and Travel Ban

On June 26, the US Supreme Court ruled on two cases:

  1. Five Justices voted in favor of a ban proposed by the President on travel to the US from seven countries: North Korea, Syria, Iran, Yemen, Libya, Somalia, and Venezuela. Muslim Advocates has filed eight lawsuits against the Trump administration regarding the Muslim Ban, including the first major lawsuit against Muslim Ban 3.0, Iranian Alliances Across Borders v. Trump, which resulted in a preliminary injunction against the ban. The organization also released a report analyzing the effects and implications of the ban and the great lengths that the administration has taken to circumvent the Constitution.
  2. The same five justices also voted against a California law requiring clinics known as "crisis pregnancy centers" to inform women about how and where to receive low-cost services; stating that "the statute violates First Amendment rights by forcing them to advertise services they oppose on moral or religious grounds".

Accessibility – Marrakesh Treaty

On June 28, the US Senate provided its advice and consent for ratification of the Marrakesh Treaty to facilitate access to published works for persons who are blind, visually impaired, or otherwise print disabled.

Education

Electric Shock Devices in Schools

On June 27, a Bristol County judge sided with the Judge Rotenberg Center (JRC) located in Canton Massachusetts, allowing JRC to continue using electric shock on over 60 students with Intellectual and Developmental Disabilities (I/DD). The judge sided with the school stating that the State "failed to demonstrate that there is now professional consensus that the Level III aversive treatment does not conform to the accepted standard of care for treating individuals with I/DD". Health and Human Services Secretary, Marylou Sudders, says the State must now decide within the next 20 days to file an appeal. Advocates continue to call on the Food and Drug Administration to act on its 2016 proposal to ban the use of electrical shock devices. In July of 2016, AUCD submitted comments regarding this proposed rule.

· Action Step: Continue to educate you Members and State HHS on the harmful repercussions of using electric shock. Emphasize that (1) there is a lack of evidence demonstrating this practice is effective in reducing self-injurious and aggressive behaviors on a long-term basis and (2) shock devices may even exacerbate or increase these behaviors and pose an unreasonable risk of significant physical and psychological harms, and (3) share effective alternatives. (see comments for examples).

Rehabilitation Training

In early May, a Request for Information (RFI) was released by Rehabilitation Services Administration (RSA) asking for comments on how RSA should spend their rehabilitation training dollars in the future (long term training, short term training, and innovation training). Comments are due July 3. While there may be many answers to this, one place where additional training would be helpful is in inclusive postsecondary education. Submit your public comments here. If you have any questions, please contact Denise Rozell.

Food Security – Farm Bill Update

The Agriculture and Nutrition Act of 2018 (also known as the "Farm Bill", H.R. 2) passed the House on June 21 by a partisan vote of 213-211, while the Senate version passed by a bipartisan vote of 86-11 on June 29. Lawmakers will now meet later this summer to reconcile or resolve the major difference between the House and Senate bills. AUCD is concerned with the House proposal to cut Supplemental Nutrition Assistance Program (SNAP; formerly known as the Food Stamps), free school lunches, food banks, and other essential food benefit programs that low-income Americans relay on. The Senate version does not propose any major changes to these crucial programs.

· Action Step: Use this pre-crafted letter (that can be personalized) to continue to educate your Members about the importance of food security for people with disabilities and low-income Americans.

Home and Community Based Services

Congregate Segregated Work Bill Update

In April, Representative Grothman (R-WI) introduced a bill to redefine congregate segregated work as integrated employment – Workplace Choice and Flexibility for Individuals with Disabilities Act (HR 5658). This bill has gained additional Republican co-sponsors. See April 30 In Brief and May 7 In Brief for background.

· Action Steps: Advocates should continue to work with their state Medicaid Agency and Members of Congress regarding: 1) comprehensive person-centered planning best practices, 2) ongoing monitoring of settings that were deemed isolating, and 3) educating on the importance value and capacity for community-based competitive and integrative employment for people with disabilities.

Guidance

On June 28, CMS issued guidance on health and welfare of HCBS participants. This guidance is in response to the Joint Report made to CMS regarding oversight of group homes for people with developmental disabilities.. This guidance is expected to be the first in a series on the topic of health and welfare. CMS expects to highlight promising practices in putting in place the suggestions in the joint report in future guidance. This document focuses on incident management, including investigations and auditing as well as transparency and stakeholder involvement. Getting better reporting and transparency of these incidents for waiver participants is important to health and welfare and should also help provide information about adequacy of services if critical incidents are tied back to training, staffing, or other similar issues.

US Supreme Court

On June 27, Justice Anthony Kennedy announced his retirement effective July 31. Kennedy known as a moderate conservative is regarded as a champion on gay rights and same-sex marriage, reducing the rates of death penalty among people with intellectual disabilities, Roe v Wade (which guarantees a constitutional right to abortion), and in recent years affirmative action. Kennedy has also supported the immigration ban proposed by the President as well as the "right to bear arms".

Shortly after Kennedy announced his retirement, the White House published a list of 25 potential candidates. Of this list, it is still not yet known who the President will choose to replace Justice Kennedy on the Supreme Court.

Despite Senate majority indicating that voting for a new Justice during an election year is of poor process (as evident in 2016 when President Obama nominated Merrick Garland and the Senate refused to hold a hearing), now Senate majority and President Trump want to "nominate and confirm a new Justice as quickly as possible".

Tuesdays with Liz: Disability Policy for All

This week Liz sits down with AUCD’s new Policy Director, Rylin Rodgers. Liz finds out what direction Rylin hopes to take the policy department in and how advocates can engage with their elected officials on social media.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News June 25, 2018

Disability Policy News In Brief

June 25, 2018

June 25, 2018 | Vol. XV, Issue 167
Budget and Appropriations

Fiscal Year (FY) 2019

The House Appropriations Committee has postponed the full committee markup. Originally scheduled for June 20, the Labor-HHS-E bill markup has been pushed to next Tuesday, June 26th. The markup will be webcast here. (See last week’s In Brief for a summary of the bill.) The FY19 $177.1 billion bill does not include an increase over FY18, which means select program increases come at the expense of other programs. The Committee report with detailed line item funding amounts should be posted on Monday. This draft bill includes $196 million cuts from HRSA (which includes funding for LEND). See full text here (HRSA begins on page 48). See Committee page for more information.

Rescission – a process that the President may use to ask Congress to cut already appropriated or authorized money.

On June 20, the Senate narrowly rejected (48-50) President Trump’s plan to take back roughly $15 billion in spending that was approved by Congress earlier this year, including significant CHIP funding. Congress had until Friday to pass the rescissions package, which passed the House last week. See previous In Brief for background on rescission efforts.

House 2019 Budget Resolution

House Budget Committee Chair Womack introduced a 2019 Budget Resolution (see definition) on June 19, which the Budget Committee passed June 21. The clear purpose is to cut entitlement programs (such as Medicaid, Medicare, Social Security, Unemployment, etc.). It instructs 11 House Committees to come up with at least $302 billion in savings over 10 years. With the midterms approaching and little interest to do this, it’s largely a messaging bill. Senate Budget Committee Chairman Enzi says he’s working on his own 2019 budget plan, but there is less urgency since a 2-year budget deal set spending levels for FY19. There is always a risk, depending on the outcome of the elections, that efforts to cut programs could be revived during the lame duck session (see definition). The plan is similar to past House Budgets: nearly $6 Trillion in cuts over 10 years, with about a third from Medicaid, Medicare, & the ACA according to CBPP. Here is the Committee’s summary.

Health Care

On June 19, the Health Policy Consensus Group, a conservative coalition, published an article titled The Health Care Choices Proposal: Policy Recommendations to Congress. The group hopes that Congress will take up a renewed effort to "repeal and replace" the Affordable Care Act (ACA), aka ObamaCare, and make substantive changes to Medicaid, replacing ObamaCare spending with block grants. The CCD (a consortium of which AUCD is a member) explains that this would shift significant costs to states and almost certainly lead states to cut Medicaid substantially over time, potentially placing millions of low-income Americans at risk of losing part or all of their health coverage. See a September 2017 analysis by CBO for more on the negative impacts.

· Action Step: Continue educating your Members about the importance of Medicaid and protections under current law for Americans with preexisting conditions

Civil Rights

Children and Families

On June 20, all 24 Energy and Commerce Committee Democrats sent a letter to Committee Chairman Greg Walden (R-OR) and Health Subcommittee Chair Michael Burgess (R-TX) demanding an immediate hearing on the well-being of children being "forcibly separated from their parents and families" and placed into the custody of the Department of Health and Human Services’ (HHS) Office of Refugee Resettlement (ORR). According to reports, ORR shelters are now operating at 95 percent capacity and it is not clear that HHS has adequate staff and resources to provide appropriate housing, food, clothing, counseling and other necessities to all children in its care. The agency is so overwhelmed that it has reportedly resorted to housing children in a tent city in the desert outside of El Paso, Texas.

On this same day, AUCD made a public statement opposing family separation at borders and calling on lawmakers and the Administration to take action. See statement here.

· Action Step: Challenges continue for migrant children and families. Use the AUCD statement to support your education and advocacy work to ensure the human rights of children are addressed. Share your thoughts on the safety and care of children who likely include children who have disabilities.

Update on DREAMers/DACA Bills

Last week’s In Brief reported on several bills related to immigration. Since then, the Securing America’s Future Act (HR 4760),introduced by Representative Goodlatte (R-VA) did not pass. The other "compromise" bill called Border Security and immigration Act was postponed until sometime this week, "to give members more time to review it."

· Action Step: Continue to share details about the roles DREAMers/DACA recipients play in your life and your community with your Representatives (find them using this tool). If you have examples of DREAMers/DACA recipients working in jobs that impact disability, share that as well.Also share input onhow immigration policy is impacting workforce that touches lives of people with disabilities.

Education

Perkins

A bipartisan bill, equally supported by both democrats and republicans, reauthorizing the Carl D. Perkins Career and Technical Education (CTE) Act will be marked up in the Senate HELP Committee on Tuesday June 26. The federal government spends about 1.5 billion each year on CTE programs, but the law has not been updated since 2006. Senators Alexander, Murray, Enzi, and Casey have developed bill language including some new language important to students with disabilities and their families. The bill includes mention of students with disabilities and the purpose of preparing them for employment in the "Purposes Section", explicitly includes the requirement that representatives of individuals with disabilities be included in the state plan, creating a state set-aside of funds to use as recruitment of special populations including students with disabilities, and a definition of "universal design for learning" has been added and referred to as a recommended instructional strategy. The hearing can be viewed here. Information on CTE can be found here.

· Action Step: Use this updated engagement to contact your Senators and educate them on how these new additions to the bill are crucial for the success of students with disabilities and expands opportunities for competitive employment.

"Significant Disproportionality" Rule

On June 15, the Department of Education filed the Final Rule on compliance regarding "Equity in IDEA" or "significant disproportionality" regulations. See previous In Brief for more information. Given the timeframe of comment review and the filing, the Final Rule may be posted in the Federal Register in September.

· Action Step: Even if the Department of Education extends the deadline for compliance, states have the option to move forward. Reach out to the Department of Education and Governor in your state and share the importance of moving forward. If you submitted public comment on the rule, you can share the comments with leaders in your state to advocate for their leadership.

ABLE Act

AUCD signed on to a letter with 159 other organizations emphasizing the importance of increasing the age of onset of a disability for ABLE accounts through age 46 (the current age is 26), allowing those who become disabled later in life to open accounts.The letter was sent to all co-sponsors of the bill in both the House and Senate; the committee members’ staff of House Ways & Means and Senate Finance Committees; the House and Senate leadership staff; and all of the Chiefs of Staff and Legislative Directors of the House and Senate. See letter here.

· Action Step: Please use the AUCD Action Center to send an email (which you can personalize)Educate your Members on the importance of increasing the age limit and/or advocate for your Members to cosponsor ABLE Age Adjustment Act HR 1874/S 817.

Proposed Federal Department Mergers

The Trump administration wants to combine the standalone Education and Labor Departments into a new Cabinet-level agency: Department of Education and the Workforce. The proposal is part of the administration’s broader plan to reorganize the federal government, released June 21. Overall, the plan would eliminate and combine government programs and give private industry a bigger role. It would also rename the Department of Health and Human Services to the Department of Public Welfare (and give it jurisdiction over food stamps), among nearly 30 changes to how the federal government operates. As it currently stands, the proposal is just a plan and likely to go nowhere in Congress, which has the sole authority to create, eliminate, and reorganize federal agencies.

Tuesdays with Liz: Disability Policy for All

This week we share part 2 of Liz’s interview with Hill Staffer Kate Mevis. In part 2, Liz and Kate continue their chat about the importance of inclusive employment and the influence Liz’s presence had on the staff and office of U.S. Senator Bob Casey. Learn more:

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News June 11, 2018

June 11, 2018 | Vol. XV, Issue 165
Voting

Maine, Nevada, North Dakota, South Carolina, Virginia are holding their primaries on June 12. Make sure you are registered so you can vote!

Health Care

Did Congress Vote to Cut CHIP?

On June 7, the House voted along party lines (210-206 – Republicans for, Democrats against) to pass a White House proposal that would take back nearly $15 billion in previously approved government funding. The proposal called the Spending Cuts to Expired and Unnecessary Programs Act (HR 3), is a mechanism being used in an attempt to balance the $1.3 trillion spending bill the President signed earlier this year. (see previous In Brief for more on the rescission effort)

Children’s Health Insurance Program (CHIP), makes up almost half of the $15 billion. The concern is it would lead to barriers to coverage if enrollment is higher than expected; i.e., think of the money as a back-up plan, if lots of new kids become eligible – due to something like a recession – there would be no funding to support them. However, the Congressional Budget Office analysis says that the rescissions would not affect any spending on children’s health, and would not affect any coverage. Also, for the cuts to happen the Senate has to act, and it is still unclear if they will take up the issue at all let alone how the vote would turn out.

  • Action items: 1) Call your Representative and share your thoughts on how they voted and your thoughts overall on the value of CHIP. 2) Call your Senators and share your thoughts on CHIP.

Healthcare Scorecard

On June 4, the Centers for Medicare & Medicaid Services (CMS) released the Medicaid and CHIP "Scorecard" that outlines quality metrics along with federally reported measures. The first version of the Scorecard includes measures voluntarily reported by states, as well as federally reported measures in three areas: state health system performance; state administrative accountability; and federal administrative accountability. The metrics included in the first Scorecard reflect important health issues such as well child visits, mental health conditions, children’s preventive dental services, and other chronic health conditions. See Scorecard, summary, and factsheet here.

Tax on Health?

Majority members have been discussing a provision that is effectively a tax on premiums: People with pre-existing health conditions would be charged more based on their medical history, paying above-standard rates for coverage. Even if the new plan preserved the Affordable Care Act’s (ACA aka "ObamaCare") rules on guaranteed issue (meaning issuers cannot deny coverage), consumers with pre-existing conditions could still be priced out of the market.

"Unconstitutional Healthcare"

On June 7, the Department of Justice (DOJ) argued in court that key parts of ACA are nowunconstitutional, siding in large part with a conservative challenge to the law. Attorney General Jeff Sessions acknowledged in a letter to Speaker Paul Ryan (R-Wis.) that the DOJ has a "longstanding tradition" of defending federal laws, but argued that this is "a rare case where the proper course is to forgo defense" of the law.

The DOJ argues that ACA’s protections against people with pre-existing conditions being denied coverage or charged more should be invalidated, maintaining that the individual mandate that people have insurance or face a tax penalty is now unconstitutional. Legal experts are deeply skeptical the challenge can succeed, and 17 Democratic-led states have already intervened to defend the law in the absence of DOJ action.

The lawsuit in question was filed in February by Texas and 19 other GOP-led states, arguing that ACA is unconstitutional and should be overturned. The case is currently before a federal district court judge in Texas, Reed O’Connor, who was appointed by former President George W. Bush.

  • Action Items: 1) You can share your thoughts on protection for preexisting conditions with your Governor and Attorney General, with the Justice Department, and with your congressional delegation. 2) Register now so you can vote (and encourage others to vote) in November for Governors, Senators, and Representatives who will protect access to care for people with preexisting conditions.

Reorganizing Federal Departments

As reported in Politico, the Trump administration is preparing to release a sweeping plan for reorganizing the federal government that includes a major consolidation of welfare programs and renaming the Department of Health and Human Services (HHS). The report, set to be released in the coming weeks by the White House Office of Management and Budget, seeks to movesafety-netprograms, including "food stamps", into HHS. The plan would also propose changing the name of HHS, while separately seeking cuts at the U.S. Agency for International Development and the State Department. The biggest changes outlined by the White House are unlikely to be implemented because moving multibillion-dollar programs and renaming federal departments generally requires congressional action. However, the plan, like the President’s annual budget, demonstrates the administration’s thinking on a range of domestic policy issues. It also offers a strong political point for the White House as it tries to create an image of an administration dedicated to conservative principles and smaller government.

Hearing

On June 6, Alex Azar – Secretary of HHS – provided testimony in front of the House Committee on Education & the Workforce on "Examining the Policies and Priorities of the U.S. Department of HHS".

Money Follows the Person (MFP) Update

New Cosponsors

The EMPOWER Care Act (aka MFP reauthorization) continues to gain cosponsors from both democrats and republicans because of your advocacy. See HR.5306 cosponsors here and S.2227 cosponsors here.

  • AUCD is supporting an event to celebrate the 19th anniversary of the Olmstead Supreme Court decision. On June 22, advocates can call your Senators and Representative to share with them that Olmstead recognized the right of people with disabilities to live, work, and participate in their communities rather than an institution and how MFP supports that landmark decision by helping people move out of nursing homes and institutions into their communities.
  • Action Item: If your Member is a co-sponsor, please thank them for their support. If they are not, please continue to educate them on the importance of MFP in your state with this toolkit and pre-crated email.
  • Please also review this two page documentYour Role in Policy Advocacy as a Federally-Funded Program.

Civil Rights

Nomination of Kenneth Marcus

On June 7, Senate voted in favor (50 – 46) of the nomination of Kenneth Marcus to serve as Assistant Secretary for Civil Rights at the Department of Education.

Housing

On June 4, 12 Members of the Congressional Hispanic Caucus (CHC), led by Representatives Nydia M. Velázquez (NY-07), Tony Cárdenas (CA-29) and Adriano Espaillat (NY-13) sent a letter to U.S. Department of Housing and Urban Development (HUD) Secretary Ben Carson to highlight concerns with the department’s plan to significantly increase rent and work requirements for millions of low income families who rely on federal housing assistance. The letter also outlined a series of policies and offered to work with the Secretary to help low-income Latino individuals and families afford "decent, stable housing, earn a living wage, and get ahead".

  • Resources: Up-to-date database of vouchers targeted to people with disabilities and other special needs. An interactive tool to help you learn about the affordable housing crisis for people with disabilities in your own state and community.

Tuesdays with Liz: Disability Policy for All

This week, Liz goes from being the interviewer to the interviewee. Rylin, AUCD’s new policy director, stars as a guest host and interviews Liz about her time spent as a fellow on Capitol Hill for Senator Robert Casey.

· Read about the Senate Democratic Diversity Initiative: https://bit.ly/2sSxLHU

· Interested in working on the hill? Submit your resume here: https://bit.ly/2uhUPzw

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News June 4, 2018

June 4, 2018 | Vol. XV, Issue 164
Congressional Recess

Members of Congress are back in DC after their Memorial Day recess.

· Action Item: If you met with your Members, send a follow-up email thanking them for their time and share any resources you mentioned during your meeting.

· Future planning: Members of congress will also be on recess the first week of July, most of August, and early September – see Congress.gov schedule and a Roll-Call calendar. A searchable list of scheduled events can be found at the Town Hall Project.

Don’t Forget to Vote This Summer!

Tomorrow, June 5, Alabama’s state primary election is open. The dates for other state primaries are listed here. Primaries can be categorized as either closed, partially closed, partially open, open to unaffiliated voters, open, or top-two. Note that Louisiana, Mississippi, New Jersey and Virginia hold their legislative elections in odd-numbered years. The dates listed for those states apply to congressional and other races. Also, eight states have reserved dates for a possible primary runoff in the event that no candidate gets the required percentage of votes. Visit National Conference of State Legislatures for more information.

Health Care

Opioid Bills – Neonatal, Children, and Families

Last week, the House Education & Workforce Committee and Senate Finance Committee introduced three bills each aimed at addressing the opioid crisis and its impact on children and families:

· H.R. 5889, Recognizing Early Childhood Trauma Related to Substance Abuse Act of 2018: Requires HHS to disseminate and share information to professionals working with young children on ways to recognize children impacted by trauma related to an adult’s substance use, and how to respond in a manner that will provide the best support for the child.

· H.R. 5890, Assisting States’ Implementation of Plans of Safe Care Act: Requires the Department of Health and Human Services (HHS) to provide states with guidance to support their implementation of the plans of safe care assurance within Child Abuse Prevention and Treatment Act (CAPTA), including by enhancing their understanding of the law, addressing state-identified challenges, sharing best practices, and supporting collaboration.

· H.R. 5891, Improving the Federal Response to Families Impacted by Substance Use Disorder Act: Establishes an interagency task force to develop a strategy on how federal agencies can implement a coordinated approach to responding to the opioid epidemic, with a particular focus on the existing programs that support infants, children and their families.

· S. 2924, the Supporting Family Focused Residential Treatment Act, which aims to promote family-based residential treatment by requiring the HHS Secretary to issue guidance to states on how they can support such treatment facilities.

· S. 2926, the Improving Recovery and Reunifying Families Act, aimed at replicating effective recovery coach programs to improve outcomes for children and families in the child welfare system who are impacted by substance use disorders.

· S. 2923, the Building Capacity for Family-Focused Residential Treatment Act, which creates a grant program to promote family-based residential treatment.

· Action Item: Your congressional delegation is seeking information about the opioid epidemic. Your research, training, clinical and community perspectives are needed. Contact the Health Legislative Assistant for your Representative and both of your Senates to share your input. You may also consider scheduling an in-person meeting on the topic at the congressional offices in your community.

ABLE Act

Background Achieving a Better Life Experience Act (ABLE Act – HR 647/S 313) was signed into law by President Obama in 2014. The ABLE Act allows certain individuals with disabilities the opportunity to save resources in a tax-advantaged savings account (an ABLE account) for the purposes of covering disability-related expenses. ABLE accounts can be used to cover qualified disability expenses such as, but not limited to: education, housing, transportation.

Proposed changes and enhancement since 2014 include:

· ABLE Financial Planning Act: Allows ABLE beneficiaries who work and earn income to save additional amounts in their ABLE accounts and allow rollovers of 529 accounts to ABLE (529A) accounts. The 529 rollover was enacted as part of the Tax Cuts and Jobs Act of 2017.

· ABLE to Work Act: ABLE beneficiary who earns income from a job could save up to the Federal Poverty Level and qualify for the existing Saver’s Credit.

· ABLE Age Adjustment Act: Raising the age of onset of a disability for ABLE accounts through age 46 (the current age is 26), allowing those who become disabled later in life to open ABLE accounts.

· Current focus: Disability advocates and Congressional champions are focused on increasing the age limit to 46 in order to provide eligibility to approximately 6 million more individuals to open ABLE accounts, which would improve the sustainability of the program.

· Resources: Please see NAST summary of sustainability for talking points, ANRC for state specific information, and Tuesday’s with Liz below.

· Action Item: Educate your Members on the importance of increasing the age limit and/or advocate for your Members to support ABLE Age Adjustment Act HR 1874/S 817.

Education

Three civil rights groups are suing the Trump administration over changes to the Education Department’s rulebook for civil rights investigations, which the groups say will keep them from bringing claims on behalf of students alleging discrimination. Earlier this year, the Trump administration overhauled the rules for investigating discrimination in the nation’s schools in a way that administration officials have said is meant to "boost efficiency", but advocates have argued will weaken enforcement of civil rights.

· The National Federation of the Blind, the Council of Parent Attorneys and Advocates and the NAACP argue in a new lawsuit that the Office for Civil Rights’ new case processing manual cuts them out by telling civil rights investigators to dismiss bulk complaints. Under the new rule, they say they "will be blocked from bringing multiple claims on behalf of their multiple constituents."

· The groups argue in the lawsuit that the administration violated the Administrative Procedure Act by making the changes without putting them out for public comment. Eve Hill, an attorney representing the groups, stated "This is a substantive change to whether – not how, but whether – your complaint is investigated".

Tuesdays with Liz: Disability Policy for All

Welcome back Liz! Liz returns to AUCD full time after working with the Senate Aging Committee. In this week’s edition, Liz gives an update about proposed changes to the ABLE (Achieving a Better Life Experience) Act that have recently come out of Congress and tells you how you can get involved in advocating!

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News May 28, 2018

May 28, 2018 | Vol. XV, Issue 163
Editor’s Note: This edition of In Brief has been set early in observance of Memorial Day

Congressional Recess

Senators will be in their states until Sunday, June 3 and Representatives will be in their districts until Monday, June 4.

· Action Item: This is a great opportunity to meet with your Members in your state! If you have any questions on how to schedule appointments and what you should talk about, please contact Christine Grosso. You can also connect with your Members at a Town Hall meeting or similar public event; a searchable list of scheduled events can be found at the Town Hall Project.

· Future planning: Members of congress will also be on recess the first week of July, most of August, and early September – see Congress.gov schedule and a Roll-Call calendar.

Budget and Appropriations

Earlier this week, House and Senate Appropriations Committees approved their FY 2019 302(b) allocations for the 12 Appropriations Subcommittees. The House plan would provide no increase to the Labor-HHS-Education bill. The Senate plan would provide a $2.2 billion increase, which amounts to a 1.2 percent increase, above the FY 2018 allocation for Labor-HHS-Education bill. In all likelihood, the final bill out of conference is expected to look more like the Senate than the House plan because of the 60-votes needed to pass spending bills. The committees should take up the Labor-HHS-Education bills in late June. AUCD and other organization with HRSA programs will work with appropriators on the funding needs for Maternal and Child Health programs and Initiatives.

· You can view the allocations on the Senate Appropriations Committee website and the House Appropriations Committee website.

Health Care

Introduction of Health Equity and Accountability Act (HEAA)

On May 23, HEAA of 2018 (HR 5942) was introduced by Representative Barbara Lee (D-CA), with support from the Congressional Tri-Caucus (comprised of the Congressional Asian Pacific American Caucus (CAPAC), the Congressional Black Caucus (CBC), and the Congressional Hispanic Caucus (CHC)). Senator Mazie Hirono (D-HI) plans to introduce a companion bill soon. This bill focuses on eliminating racial and ethnic health disparities (see CDC definition) and serves as the benchmark of how to comprehensively address health equity in the United States. HEAA "addresses health inequalities, their intersections with immigration status, age, disability, sex, gender, sexual orientation, gender identity and expression, language, and socio-economic status, along with obstacles associated with historical and contemporary [current] injustices". See section by section overview of HEAA here. AUCD signed on to the HEAA letter of support earlier this month.

· Action Item: Educate your members on the importance of this bill, and the work that your Center does around addressing racial and ethnic health disparities including those experienced by people with disabilities.

"Right to Try"

On May 22, the House passed the "right-to-try" legislation (HR 5247 and S 204) by a vote of 250-169. The Senate version, introduced by Ron Johnson (R-Wis.), had already passed last August. The measure now awaits a signature from the President, who repeatedly supported the measure stating, "the Administration believes treatment decisions for those facing terminal illnesses are best made by the patients with the support and guidance of their treating physicians", and is expected to sign the legislation into law.

· Background: The bill aims to give eligible patient who have been diagnosed with a life-threatening condition, who have exhausted approved treatment options and are unable to participate in a clinical trial involving eligible investigational drugs, a different pathway to access experimental therapies that have not yet received full approval from the FDA. The legislation doesn’t obligate drug makers to provide the treatments, and it doesn’t prevent them from charging patients for their associated costs if they do.

· Thoughts on bill: Opponents say the bill would weaken the FDA’s oversight and argue the agency already has a way for terminally ill patients to use unapproved treatments. The FDA has said it approves 99 percent of requests, often quickly. Proponents, those in favor of the bill, argue that those who are terminally ill should have every tool at their disposal to try a drug that could possibly help. They note that the medicines must have passed a phase 1 clinical trial and be in the FDA’s timeline for review. They also say the drug approval process takes too long.

Medicaid Equal Access Rule

CCD co-chairs submitted a letter to HHS Secretary Alex Azar regarding the proposed rule on Methods for Assuring Access to Covered Medicaid Service (see last week’s In Brief for background). AUCD supports the concerns expressed in this letter and are awaiting the Secretary’s response.

Autism CARES

As of May 15, the following Members have joined the Autism Caucus: Blunt Rochester (DE), Courtney (CT), Gallagher (WI).

· Action Item: If you are from one of these states, please use this pre-crafted letter (that can be personalized) to thank them for joining. If your Member is not on the Caucus, please use this pre-crafted letter (that can be personalized) to encourage them to join. Please also reference AUCD’s new tool to support your efforts.

Food Security – Farm Bill Update

The current plan, announced by House Majority Whip Steve Scalise, is for a vote on the House floor on or by June 22nd. As with all plans, this may change as negotiations on the Farm Bill progress. The Senate has signaled intent to introduce its own version of the Farm Bill for mark up in the Agriculture Committee in early June, with hopes to bring the bill to the full Senate floor in late June. Again, this timing may change as negotiations are ongoing.

· Action Item: Meet with your members when they are in their states and districts during this recess and educate them on the importance of SNAP, free school lunches, food banks, and other essential food benefit programs for low-income Americans with disabilities.

· See previous In Brief for background info on this bill

Civil Rights

The Disability Integration Act (DIA) is a civil rights bill intended to address long term services and supports (LTSS) and to reduce the institutional bias that still exists in Medicaid. The legislation would require states and insurance providers that pay for LTSS to change policies to provide community-based services as a primary option and offer home and community based services (HCBS) to people currently in institutions. This bill was introduced by Senator Schumer in the Senate (S 910) and Representative Sensenbrenner in the House (HR 2472). See more information on the sections of the bill here and here.

· Action Item: If your member is a co-sponsor (House and Senate), please thank them. If not, please educate them on the importance of community-based services, the work that you do at your Center around LTSS and HCBS, the preference of people with disabilities to live in the community versus an institution, and how community care is more cost-effective than institutional care.

U.S. Court of Appeals for the Fifth Circuit

On May 24, the US Senate Committee on the Judiciary voted along party lines to approve the nomination of Andrew Oldham to the U.S. Court of Appeals for the Fifth Circuit to the full Senate. The Fifth Circuit includes: Eastern District of Louisiana, Middle District of Louisiana, Western District of Louisiana, Northern District of Mississippi, Southern District of Mississippi, Eastern District of Texas, Northern District of Texas, Southern District of Texas and the Western District of Texas. The Leadership Conference has expressed concerns related to Mr. Oldham’s history regarding the ADA, voting rights, immigrant rights, women’s access to reproductive care, environmental protection, and gun safety. Given these concerns, the Leadership Conference has a sent a letter in opposition to Oldham’s nomination.

· Action Item: Advocates are encouraged to educate their Senators on the rights of people with disabilities, the role of the ADA and the Fair Housing Act, and the importance of appointing someone to this position who is nonpartisan and has extensive knowledge in these areas.

New Appointments

On May 20, the Senate Finance Committee (Chaired by Hatch, R-Utah) held a hearing to consider the nominations of John J. Bartrum (of Indiana) to be an Assistant Secretary of Health and Human Services (HHS) and Lynn A. Johnson (of Colorado) to be Assistant Secretary for Family Support of HHS. Testimony and archived webcast can be found here.

On May 24, the Committee voted to approve the nomination of Bartum as the new assistant HHS secretary by a roll call vote of 27-0. If you would like to submit a statement for the record, please do so here.

Tuesdays with Liz: Disability Policy for All

This week we take a look back at Liz’s interview with Bruce Darling who speaks about what the DIA is and why it is important for people with disabilities.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News May 21, 2018

May 21, 2018 | Vol. XV, Issue 162
Health Care

Changes to Medicaid Equal Access

The proposed ruleMethods for Assuring Access to Covered Medicaid Services-Exemptions for States With High Managed Care Penetration Rates and Rate Reduction Threshold – would change the process for states to document whether Medicaid payments in fee-for-service (FFS) systems are enough to create a system where people have access to providers and care that Medicaid covers. AUCD is concerned that implementation of the proposed rule may lead to a significant decline in access to quality care, particularly for beneficiaries who are covered by FFS Medicaid in states exempted from medical assistance access monitoring requirements. The proposed rule would also significantly weaken CMS’s ability to monitor and enforce access to covered services in state Medicaid programs, by exempting many states and most rate cuts from rigorous reporting requirements. Moreover, the changes would be in effect before CMS has had a chance to evaluate whether the current process is effective for addressing access. See Tuesdays with Liz below for background on Managed Care.

· Action Item: We encourage advocates in high managed care penetration state (>85% in managed care: TN, HI, NE, NJ, KS, DE, AZ, IA, FL, LA, TX, KY, RI, MD, OR, NM, OH, DC) to comment on the impact of the rule in your state’s FFS system, especially highlighting carved out populations and services in your states.

· Action Item: We also encourage advocates in a state with managed care penetration between 75 – 85 % (UT, NY, PA, IN, WV, CA, MN, VA, MO, SC) to comment that CMS should not lower the threshold even further; with focus on the implications in your state FFS program.

· Action Item: Lastly, we encourage all advocates to comment on the proposed definition of "nominal" for the purpose of FFS cuts (4% for one year, or 6% over two years) by providing examples about the past impact of rate cuts of under 4%, or what they expect such cuts to cause in terms of access problems.

· Action Item: Submit public comments for this proposed rule by 5pm on May 22.

Opioid

Congress continues work to pass bipartisan bills to Combat the Opioid Crisis. See archived webcast, 7 bills, additional markup materials, and list of amendments here.

· Action Item: Contact your congressional delegation and share how the Opioid Crisis is impacting your community and your work.

Electronic Visit Verification (EVV)

On May 16, Centers for Medicare and Medicaid Services released guidance on EVV. Section 12006(a) of the 21st Century Cures Act mandates that states implement EVV for all Medicaid personal care services (PCS) and home health services (HHS) that require an in-home visit by a provider. States must require EVV use for all Medicaid-funded PCS by January 1, 2019 and HHCS by January 1, 2023. Please visit Medicaid.gov for more information. Disability leader continue to be concerned about gaps in guidance that would protect privacy and civil rights of consumers. Congressional intent was that EVV was only to be used for PCS and HHS provided in a person’s own home. Gaps and guidance leave states struggling with important privacy decisions; for example:

· Whether a service is subject to EVV just because the provider meets the individual at their home to provide a service elsewhere in the community;

· How EVV requirements apply when services are provided in multiple locations during a shift.

Public Health

The Senate Health, Education, Labor and Pensions (HELP) Committee introduced the "Pandemic and All-Hazards Preparedness and Advancing Innovation Act" (S. 2852). The bill, which authorizes $685 million for the public health emergency preparedness program and $385 million for the hospital preparedness program, is scheduled to be marked up in committee on May 23.

Education

Career and Technical Education Act

AUCD supports the letter that CCD sent to Chairman Alexander and Ranking Member Murray (of the Senate Health Education and Labor Committee) regarding reauthorization of the Carl D. Perkins Career and Technical Education (CTE) Act. The letter provides 12 recommendations to improve outcomes for individuals with disabilities and support their transition to career training and/or postsecondary education. HR 2353Strengthening CTE for the 21st Century Act – reauthorizes through FY2023 and increases funding levels for Department of Education grants to states, national programs, and tribal postsecondary CTE institutions under the Carl D. Perkins CTE Act of 2006 to support CTE programs for secondary and postsecondary students. See more information from CBO here and from the Committee here.

· Action Item: Share work you are doing around apprenticeships, and other technical education training programs with your Senators. Information would most effectively be directed to the Legislative Assistant (LA) who focuses on education or employment. Contact Rylin if you need help finding the current LA email address.

Significant Disproportionality Rule

At least 15 states (Alaska, Arizona, Connecticut, Indiana, Maryland, Michigan, Nevada, New York, North Dakota, Oklahoma, Oregon, Rhode Island, Tennessee, Washington and Wisconsin) plan to move forward with an Obama-era special education rule this summer. States were supposed to comply by July with the "significant disproportionality" rule – aimed at tackling racial disparities in special education; however, Education Secretary DeVos has proposed a two-year delay, citing "possible federal overreach". See previous In Brief for background.

· Action Item: Advocates are encouraged to share their comments and thoughts with your state Education Leadership. This can be the same information you submitted to the Department of Education during the public comment period.

Farm Bill Update

Background: Introduced by Rep. Conaway (R-TX), the Agriculture and Nutrition Act of 2018 (also known as the "Farm Bill") includes sweeping changes to nutrition benefit programs and reduces or cuts SNAP for millions of people across the U.S., including many people with disabilities and low-income families. Update: the House Rules Committee accepted amendments on the bill, H.R. 2, through May 11 and then held two hearings that took place on May 17 and 18. Outcome: The bill failed on the House floor by a vote of 198-213.

· Action Item: AUCD will continue to monitor this bill as sponsors are expected to regroup, but in the meantime, celebrate your great advocacy, review the vote of your Representative and follow-up to thank them or express your continued concerns.

Tax Hearing

On May 23, House Committee on Ways and Means Tax Policy Subcommittee (Chairman Vern Buchanan, R-FL) Subcommittee will hold a hearing on how tax reform is "helping small businesses grow their operations and invest in local communities and workers". The hearing will be the second in a series on the effects of tax reform. In view of the limited time to hear witnesses, oral testimony at this hearing will be from invited witnesses only. However, any individual or organization may submit a written statement by June 6 for consideration by the Committee and for inclusion in the printed record of the hearing.

· Action Item: Please click here to submit a statement or letter for the record.

Administration

On May 16, the Senate approved (50-to-48 vote along party lines) Mick Zais to be deputy secretary at the Department of Education. Zais is a retired Army brigadier general and former state superintendent of South Carolina schools. Prior to serving as South Carolina’s superintendent, Zais was president of Newberry College for 10 years. He has also served as president of the American Philatelic Society, the world’s largest nonprofit stamp-collecting organization. More information here.

The White House announced it plans to nominate Scott Stump of Colorado, to be Assistant Secretary for Career, Technical, and Adult Education at the Department of Education. Mr. Stump is the Chief Operating Officer for Vivayic, Inc., a learning solutions company based in Lincoln, Nebraska. Previously, he served as the Assistant Provost for CTE with the CO Community College System. In 2014, Mr. Stump served as President of the National Association of State Directors of CTE consortium, now called Advance CTE.

Tuesdays With Liz

This week we are revisiting Liz’s interview with John Tschida about the background and purpose of managed care.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News May 7, 2018

May 7, 2018 | Vol. XV, Issue 160
Budget and Appropriations

Sources indicate that as early as tomorrow, the President is expected to submit a request to Congress to take back from states roughly $15 billion in "unused appropriations leftover from prior fiscal years"; this is the first of what administration officials say will be several rescission proposals in the coming months. This initial proposal, which uses a provision of the Congressional Budget and Impoundment Control Act of 1974 (find more information on this law here), is expected to leave the $1.3 trillion fiscal 2018 omnibus spending law (PL 111-141) untouched – for now – although the exact contents remained under discussion. As of last week, the White House was considering a $60 billion package, that would include some proposed cuts to the omnibus on top of rescinding unobligated balances.

· Action Item: Continue to educate your Members about the value of programs you care about.

Health Care

Food Security

As reported in previous In Brief, the House Committee on Agriculture approved H.R. 2, the Agriculture and Nutrition Act of 2018 (also known as the "Farm Bill"). Introduced by Rep. Conaway (R-TX), the bill includes sweeping changes to nutrition benefit programs and reduce or cut SNAP for millions of people across the U.S., including many people with disabilities and low-income families. Sources indicate that the bill will go for a vote on the House floor the week of May 7.

· Action Item: Use this pre-crafted letter (that can be personalized) to continue to educate your Members about the importance of food security for people with disabilities and low-income Americans.

· Action Item if you are in DC: Join the SNAP rally on May 8th in front of the U.S. Capitol. More information on time and location can be found here.

Also within this bill is funding for "agriculture association health plans"; this provision would provide $65 million over four years for associations of ranchers, farmers or other agribusiness owners to obtain grants or loans from the government to offer their members health coverage. Those who are opposed to association plans argue that because these plans are not subject to the current healthcare law, varying requirements can be set depending on the state in which they operate, which could lead to barriers to enrollment, increased out of pocket expenses, lack of comprehensive coverage, and more. However, Dan Mendelson (chief executive of Avalere Health) explains that "rural communities have long lacked enough health insurance options. Although it’s too early to say how well agriculture association plans might work, they could present a viable option under the right circumstances".

· Action Item: Continue to educate your Members about the importance of affordable, accessible, and comprehensive health care

Employment

Hearing

On May 9, the House Small Business Committee is holding a hearing entitled Ready, Willing, and Able to Work: How Small Businesses Empower People with Developmental Disabilities (DD). The purpose of the hearing is to "examine the role small businesses have played in employing individuals with differing abilities and the lessons that have been learned".

· Action Item: If your Representative is a member of this committee, we encourage you to follow-up by giving examples of ways you and/or your Center is engaged around community employment for people with DD in your state or territory.

Home and Community Based Settings Rule

As reported in last week’s In Brief, advocates should continue to work with their state Medicaid Agency and Members of Congress regarding: 1) comprehensive person-centered planning best practices, 2) timely notice of public comment periods in order to respond to revised statewide transition plans, and 3) ongoing monitoring of settings that were deemed isolating.

On April 27, Representative Grothman (R-WI), as a follow up to a letter sent to CMS, introduced a bill to redefine congregate segregated work as integrated employment – Workplace Choice and Flexibility for Individuals with Disabilities Act (HR 5658). AUCD is monitoring this bill and educating around the impact that this bill could have on meaningful employment opportunities for people with disabilities.

· Action Item: reach out to your Members of Congress and education them about the importance of, value of, and capacity for community-based competitive and integrative employment for people with disabilities.

For information on the Rule and what is happening in your state, please visit https://hcbsadvocacy.org. If you have any questions please contact Christine Grosso.

Money Follows the Person

Colorado

On April 30, the Department of Health Care Policy and Financing in Colorado announced that Governor John Hickenlooper signed House Bill 18-1326, which will help eligible Health First Colorado (Colorado’s Medicaid program) members living in institutionalized settings move into community-based settings with local services and supports. As of December 2017, 328 Health First members transitioned into the community at a savings of more than $2.8 million to the state of Colorado. Ninety-three percent of members who transitioned are still successfully living in the community.

· Action Item: If you are from Colorado please thank Governor Hickenlooper. If you are not, please continue to educate your Members on Congress on the importance of MFP in your state.

Census Update

Last month, The Leadership Conference on Civil and Human Rights circulated a sign-on letter urging Congress to hold oversight hearings on Commerce Secretary Wilbur Ross’ decision to include a citizenship question on the 2020 Census. AUCD and more than 300 organizations signed on from across the country. Since then, two more lawsuits have been filed in addition to the lawsuit filed by the state of California and the multi-state lawsuit spearheaded by New York Attorney General Eric Schneiderman with co-plaintiffs The U.S. Conference of Mayors. On April 11, a group of individuals from Maryland and Arizona filed a lawsuit in federal court in MD to challenge the Trump administration’s addition of a citizenship question on the 2020 Census questionnaire. The litigation is being supported by the National Redistricting Foundation (NRF), a 501(c)(3) affiliate of the National Democratic Redistricting Committee (NDRC). On April 17, the Lawyers’ Committee for Civil Rights Under Law, filed a lawsuit on behalf of the City of San Jose and the Black Alliance for Just Immigration, a California-based immigrant rights group. All of these lawsuits allege claims based on constitutional and Administrative Procedure Act grounds.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News April 30, 2018

April 30, 2018 | Vol. XV, Issue 159
Health Care

Autism CARES Data

On April 26, the Centers for Disease Control and Prevention released Autism and Developmental Disabilities Monitoring (ADDM) Data, which shows that about 1.7%, or 1 in 59, school-aged children in 2014 were identified with autism.

  • Action Item: Use this new report as a chance to reach out to your congressional delegation and educate them on the work you do as it relates to Autism CARES (LEND, state plans, training of developmental behavior pediatricians, lifespan services and supports, etc.). Additionally, you are encouraged to invite members of your delegation to join the Autism Caucus by using AUCDs new tool to support your efforts; you can also use this pre-crafted letter (that can be personalized) to thank them for joining or to encourage them to join the Autism Caucus if they have not.

Food Security Update

As reported in last week’s In Brief, the House Committee on Agriculture approved H.R. 2, the Agriculture and Nutrition Act of 2018 (also known as the "Farm Bill"). Introduced by Rep. Conaway (R-TX), the bill includes sweeping changes to nutrition benefit programs and reduce or cut SNAP for millions of people across the U.S., including many people with disabilities and low-income families. Sources indicate that the bill will go for a vote on the House floor the week of May 7.

  • Action Item: Use this pre-crafted letter (that can be personalized) to continue to educate your congressional delegation about the importance of food security for people with disabilities and low-income Americans.

Education

Discipline Disparities

On April 24, the Department of Education released the biennial Civil Rights Data Collection. The report highlights disparities in the way students are treated in the nation’s schools. Students with disabilities, for instance, accounted for 28 percent of students referred to law enforcement or arrested in 2015-16, despite making up just 12 percent of overall student enrollment. Those students were also by far the most frequent targets of bullying. Such disparities exist in rates of suspensions, expulsions and incidents in which students were restrained or secluded as well.

  • Action Item: Submit individual or organizations comments on the notice of proposed rulemaking that would postpone by two years the compliance date for implementing efforts to correct disparate treatment of students of color with disability; deadline to submit is May 13, 2018. You are also encouraged to send a copy of your comments to your congressional delegation.

Higher Ed

For children and adults with disabilities and their families, the Higher Education Act (HEA) is of critical importance. AUCD has joined nearly 50 other organizations in signing onto civil rights principles that we believe must be included in the upcoming reauthorization of that law. The HEA creates higher education opportunities for students with intellectual disability (ID) through its creation of the Transition and Postsecondary Programs for Students with Disabilities (TPSIDs). Inclusive postsecondary programs are effective at helping students with ID find meaningful competitive employment with increased wages thus helping individuals who may never have had such opportunities achieve financial stability. Additionally, through these programs we are seeing better outcomes in employment and wages, social networks, self-determination, and community living for students with ID. The HEA also provides support for special education teachers in the form of loan forgiveness, and grants and scholarships in a field where 98% of school districts are already facing and limiting services and supports to students with disabilities. It also represents the only federal investment to help prepare teachers in high need fields, such as special education, with the state of the art effective strategies for success.

Employment

Subminimum Wage

Section 14(c) of the Fair Labor Standards Act (FLSA) lets Department of Labor (DOL) issue certificates to eligible employers allowing them to pay workers with disabilities a subminimum wage. According to public DOL data, employers held more than 1,700 14(c) certificates covering more than 150,000 workers eligible to receive a subminimum wage as of January 2018. This week Senators Elizabeth Warren, Bob Casey, Patty Murray, Chris Van Hollen, Maggie Hassan, Tammy Duckworth, and Bernie Sanders sent a letter pressing DOL to publicly report the pay rates of individuals with disabilities paid by employers using 14(c) certificates, at the national and state level. In addition, the senators requested a variety of data on DOLs evaluation of certificate applications, violations of FLSA among certificate holders, and DOLs revocation of certificates, among other information.

  • Action Item: Reach out to both of your Senators and express your interest in receiving the requested information as it related to your state.

Home and Community Based Settings Rule

In 2014, the Centers for Medicare and Medicaid Services (CMS) issued the HCBS Settings Rule – please visithcbsadvocacy.org for background and timelines. This weekend, AUCD became aware of a letter from Representatives Grothman (R-WI) and Sensenbrenner (R-WI) to CMS requesting that the Rule be modified to eliminate the presumption against intentional communities, sheltered workshops, campus settings, farmsteads, and other residential, work, and day programing options designed to serve only individuals with intellectual or developmental disabilities.

  • Action Items: Advocates, especially those in Wisconsin, should continue to work with their state Medicaid Agency and Members of Congress regarding: 1) comprehensive person-centered planning best practices, 2) timely notice of public comment periods in order to respond to revised statewide transition plans, 3) ongoing monitoring of settings that were deemed isolating.

If you have any questions please contact Christine Grosso.

Housing

On April 25, Housing and Urban Development Secretary Ben Carson unveiled a package of reforms – Making Affordable Housing Work Act – that would amend the Housing Act of 1937 to introduce new rent reforms and standards. The bill establishes a new formula for calculating rent: increasing what families must pay of their gross monthly income up to 35 percent or 35 percent of what an individual would earn working 15 hours a week for four weeks at minimum wage (whichever is higher) and establishes a new minimum rent for households who are currently exempt from paying 30 percent, namely older adults and people with disabilities; the bill also enables public-housing authorities (PHAs) and landlords who accept vouchers to set work requirements for people who receive housing assistance and includes "alternative" rent structures, such as tiered rents that PHAs can choose to adopt (these standards, to be established through future regulations, would serve as time limits for households receiving housing aid). AUCD is concerned that these measures will have negative impact on low-income American’s who temporarily rely on subsidies housing and make it more difficult for families to develop economic stability.

  • Action Item: Educate your Members of Congress on the importance of accessible and affordable housing for people with disabilities and their families.

2018 Disability Policy Seminar

We hope you enjoyed the AUCD Trainee Summit and Disability Policy Seminar, please be sure to complete your evaluation and share your experience on the hill with AUCD Director of Public Policy, Rylin Rodgers. Building relationships – hill visit follow-up:

  • Send thank you notes
  • Send any promised or requested information
  • Set a reminder for future communication. Ideas include: Share you LEND project; Share your Center’s newsletter; Share local media coverage of issues related to disability.

For future reference: Topical factsheets and Your Role in Policy Advocacy as a Federally-Funded Program.

Tuesdays with Liz: Disability Policy for All

The Tuesdays with Liz series is taking a break while Liz Weintraub is on detail working with the Senate Aging Committee. Tuesdays with Liz will return to a regular taping schedule and new episodes will air in the late Spring when Liz returns to AUCD. Until then, we will be highlighting some of our favorite Tuesdays with Liz episodes from this past year on social media at @AUCDnews.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News April 23, 2018

April 23, 2018 | Vol. XV, Issue 158
Editor’s note: April 23rd edition of In Brief has been sent early due to the Disability Policy Seminar.

Budget & Appropriations

On April 18, White House Budget Director Mick Mulvaney stated that a rescission package that could cut as much as $60 billion from the $1.3 trillion omnibus (H.R. 1625), could be introduced in the "next couple of weeks," with aims of a House floor vote before July. Mulvaney told a House Appropriations panel that the proposal could target unused funding in existing accounts, as well as money the White House disputes in the $1.3 trillion omnibus. These comments were made during a hearing related to FY19 funding.

Action Item: The most effective way to protect FY 18 funds is to continue educating and advocating around LEND and UCEDD funding for FY19. Your messaging to the Senate around FY19 will serve to reinforce the importance of the FY18 funding and is a clear reminder to not adjust the FY18 agreement. Please use the AUCD Action Center to send an email (which you can personalize) to your Members of Congress advocating and/or educating about the importance of LEND, and advocating and/or educating about the importance of UCEDD.

Autism Cares

The Autism CARES Act of 2014 will expire if it is not reauthorized by September 30, 2019. The law has helped to expand research and coordination at the National Institutes of Health (NIH), increased public awareness and surveillance at the Centers for Disease Control and Prevention (CDC), and expanded the interdisciplinary and inter-professional training of health professionals to identify and support children and youth with ASD and their families through programs of the Health Resources and Services Administration (HRSA), such as LEND. AUCD is working with legislative champions as it appears that Congress will take up the reauthorization process this session.

Action item: now is the time to reach out to your congressional delegation and educate them on the work you do as related to Autism CARES (LEND, state plans, training of developmental behavior pediatricians, lifespan services and supports, etc.). Additionally, you are encouraged to invite members of your delegation to join the autism caucus; AUCD created a new tool to support your efforts to connect your congressional delegation to the Autism Caucus.

Health Care

Opioid

The Senate HELP Committee is set to vote on The Opioid Crisis Response Act of 2018 (S. 2680) on April 24. That bill would boost prescription drug monitoring program data-sharing, ease some privacy requirements, increase data collection including data around neonatal abstinence syndrome, and create a pilot program related to trauma informed practices for children and families.

Action item: share your voice and expertise from your network with committee members.

Food Security

On April 18, the House Agriculture Committee advanced the farm bill along party lines by a vote of 26-20. Historically a bipartisan effort, division this year reflects concerns about proposed SNAP (aka food stamp) changes. Public comments from leadership of the Senate Agriculturecommittee reflects a desire to work for a middle ground. Senator Debbie Stabenow said, "Agriculture has always been the place that was bipartisan."

Action item: use this pre-crafted letter (that can be personalized) to continue to educate your congressional delegation about the importance of food security for people with disabilities and low-income Americans.

Education

Higher Ed Reauthorization – PROSPER Act (HR 4508)

December 2017 the House Education and Workforce Committee passed its version of the Higher Ed Reauthorization bill called Promoting Real Opportunity, Success, and Prosperity through Education Reform Act (PROSPER), which would eliminate funding for all federal inclusive higher education programs (except TIPSIDs). In response to this, AUCD submitted two letters providing recommendations specifically addressing inclusive postsecondary education and TPSID programs (see previous In Brief). As of April 19, there has been discussion of bringing this bill to the Full House for a final vote.

Action item: Educate your Representatives on the importance of inclusive postsecondary education and TPSID programs for students with disabilities. AUCD’s December letter provides additional talking points. If you have any questions please contact Denise Rozell.

Family First Prevention Services Act

AUCD signed onto a letter along with the Children’s Defense Fund thanking Congressional leaders for passage of the bipartisan and historic Family First Prevention Services Act (HR 253). AUCD was one of the more than 400 organizations that joined the 2016 sign-on letter supporting Family First (click here for a copy of that letter).

Appointments

April 19, Health and Human Services (HHS) Secretary Alex Azar announced that James Parker (CEO of health plan MDwise) will serve as Senior Advisor to the Secretary for Health Reform and Director of the Office of Health Reform at HHS. Mr. Parker will lead the initiative to address the cost and availability of health insurance. Parker will also direct HHS’ Office of Health Reform, a division originally created in 2009 to implement Affordable Care Act (aka Obamacare) that was quietly pared-back last fall.

Employment

Senate Employment

Liz Weintraub of AUCD, who has been working in Senator Casey’s office, shared a tool from the Senate Democratic Diversity office that streamlines the employment process for diverse candidates including people with disabilities. The tool is a resume bank where a candidate can upload their resume to be considered for positions in the Senate. Please visit Senate Diversity Initiative Resume Bank for more information.

2018 Disability Policy Seminar

We hope you enjoyed the AUCD Trainee Summit, please be sure to complete your evaluation, and we look forward to hearing about your experience and participation during the remaining days of Disability Policy Seminar (April 23-25). Not coming? You can still participate:

· Use the topical factsheets created for the seminar to support your advocacy voice.

· Join, follow, and amplify the conversation on social media with #DPS2018.

· Learn about Your Role in Policy Advocacy as a Federally-Funded Programrecently published by AUCD

If you have any questions regarding hill visits please contact Director of Public Policy, Rylin Rodgers.

Tuesdays with Liz: Disability Policy for All

The Tuesdays with Liz series is taking a break while Liz Weintraub is on detail working with the Senate Aging Committee. Tuesdays with Liz will return to a regular taping schedule and new episodes will air in the late Spring when Liz returns to AUCD. Until then, we will be highlighting some of our favorite Tuesdays with Liz episodes from this past year here and on social media at @AUCDnews.

This week we are revisiting Liz’s interview with Sara Luterman, Founder and Editor of NOS Magazine, who spoke about the importance of inclusion in the workplace, particularly when it comes to including people with autism.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News April 9, 2018

April 9, 2018

April 9, 2018 | Vol. XV, Issue 156
Congress

Members of Congress return to DC this week after a two-week recess.

Action Item: If you met with your Members or attended an event where they were present, follow up with a thank you and a reminder of your priorities.

Budget & Appropriations

Fiscal Year 2018

News reports indicated that the White house is considering using a provision of the Congressional Budget and Impoundment Control Act of 1974 to cut billions of dollars in spending from the bipartisan omnibus funding deal they just passed March 23. The process would be a rescission resolution requiring a simple majority vote by the Senate. AUCD is monitoring this consideration and meeting with Members to discuss potential implications.

Fiscal Year 2019

House and Senate subcommittees are in the process of crafting 12 appropriation bills for FY19.

Action Item: Continue to education and advocate around LEND and UCEDD funding for FY19. Your messaging to the Senate around FY19 will serve to reinforce the importance of the FY18 funding and is a clear reminder to not adjust the FY18 agreement. Please use the AUCD Action Center to send an email (which you can personalize) to your Members of Congress advocating and/or educating about the importance of LEND, and advocating and/or educating about the importance of UCEDD.

Health

Opioids

The $1.3 trillion omnibus spending package enacted last month boosted funding for both the National Institutes of Health and Centers for Disease Control and Prevention, some of which will go toward the opioid crisis.

· Following six hearings over the past six months, on April 4, Senate HELP Committee leaders released a bipartisan discussion draft of a bill aimed at combating the opioid epidemic. On April 11, the committee will hold a hearing on the Opioid Crisis Response Act, which includes measures attempting to make it easier to prescribe smaller packs of opioids for limited durations, spur the development of nonaddictive painkillers, and bolster the detection of illegal drugs at the border. Committee Chairman Lamar Alexander (R-TN) has said he’d like to see opioid legislation marked up this spring.

· Members of the House Energy & Commerce (E&C) Committee are evaluating more than 30 proposals ranging from improving data sharing to enhancing the Food and Drug Administration’s authority to target illicit drugs in the mail. E&C Chairman Greg Walden (R-OR), is aiming to introduce legislation by Memorial Day. Prior to this, on April 11, the Healthcare, Benefits and Admin Rules Subcommittee (Chairman Jim Jordan, R-OH) will hold a hearing on "Local Responses and Resources to Curtail the Opioid Epidemic".

Education

Discipline Disparities

On April 4, Representatives Bobby Scott (VA-03), ranking member of the House Committee on Education & the Workforce and Jerrold Nadler (NY-10), ranking member of the House Committee on the Judiciary released a Government Accountability Office (GAO) report entitled, "Discipline Disparities for Black Students, Boys, and Students with Disabilities." The ranking members requested that the GAO investigate disparities in discipline policies and practices applied to students of color, boys, and students with disabilities. The report identified that black students, boys, and students with disabilities are disproportionately disciplined in K-12 public schools. This pattern of disproportionate discipline persists regardless of the type of disciplinary action, level of school poverty, or type of public school students attend. In 2014, the Department of Ed and the Department of Justice issued a School Discipline Guidance Package, to remind schools of their legal obligations to administer school discipline without discriminating on the base of race, color, or national origin. Based on the empirical evidence provided in this GAO report, Representatives Scott and Nadler explained that "it is critically important the guidance be strengthened, and not rescinded, as some have suggested."

Action item: You can submit individual or organizations comments on the notice of proposed rulemaking was issued that would postpone by two years the compliance date for implementing efforts to correct disparate treatment of students of color with disability until May 13, 2018. You may wish to send a copy of your comments to your congressional delegation.

Tribal Consultation

The Department of Education has invited tribal leaders, Native youth, and other stakeholders to a tribal consultation on April 22 in Albuquerque, NM. they are seeking input on Bureau of Indian Affair’s role in overseeing and managing federal education programs funded by the U.S. Department of Education.

E4Texas

The Texas Center for Disabilities at the University of Texas at Austin announced E4Texas, which is a college-based experience for young adults with intellectual and developmental disabilities to obtain education related to employment, daily living skills, and professionalism. Students will attend classes on the main campus in Austin.

Money Follows the Person

Continue educating your Members of Congress on the importance of Money Follows the Person (MFP) – particularly those members on the House Energy & Commerce Committee – in order to ensure that MFP is reauthorized and people with disabilities have access to their community. Please use this toolkit to help with your advocacy. Bill numbers: EMPOWER Care Act – S. 2227 and HR 5306.

HCBS Settings Rule

In 2014, the Centers for Medicare and Medicaid Services (CMS) issued the HCBS Settings Rule. Please visithcbsadvocacy.org for background and timeline. Action Items: Advocates should continue to work with their state Medicaid Agency regarding: 1) comprehensive person-centered planning best practices, 2) timely notice of public comment periods in order to respond to revised statewide transition plans, 3) ongoing monitoring of settings that were deemed isolating. If you have any questions please contact Christine Grosso.

2018 Disability Policy Seminar

The Trainee Orientation archived webinar, which highlighted what you can expect and how you should prepare, is now available. Please also remember to register:

· Any hill visits you have scheduled

· AUCD Trainee Summit on April 22

· Disability Policy Seminar, April 23-25

Appointments

On March 30, the President announced the following appointments to the President’s Committee for People with Intellectual Disabilities: Emily Colson of MA, Olegario Cantos VII of VA, Claudia Horn of NC, Stephanie Hubach of PA, Annette Liike of MI, Vijayalakshmi Appareddy of TN, Karen Moderow of CA, and Christopher Glenn Neeley of SC. See also AUCDs summary of background and biographies for each appointee. Action Item: Reach out to Members with whom you have connections or who are from your state, congratulate them and share about your work and experience.

Policy Internship

Each semester, the lindsay before April 30.

Tuesdays with Liz: Disability Policy for All

The Tuesdays with Liz series is taking a break while Liz Weintraub is on detail working with the Senate Aging Committee. Tuesdays with Liz will return to a regular taping schedule and new episodes will air in the late Spring when Liz returns to AUCD. Until then, we will be highlighting some of our favorite Tuesdays with Liz episodes from this past year here and on social media at @AUCDnews.

This week we are revisiting Liz’s interview with Finn Gardiner of ASAN Boston as he reflects on his work in involving self-advocates in Autism Research.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News April 2, 2018

April 2, 2018 | Vol. XV, Issue 155

Congressional Recess

Members of Congress will be in their states and districts until April 8.

Action Item: This is a great opportunity to meet with your Members in your state! If you have any questions on how to schedule appointments and what you should talk about, please contact Christine Grosso. You can also connect with your Members at a Town Hall meeting or similar public event; a searchable list of scheduled events can be found at the Town Hall Project.

Budget & Appropriations

Fiscal Year 2019

Last week the FY18 $1.3 trillion spending bill was signed into law. Now subcommittees need to write, mark up, and vote on all 12 appropriation bills for FY19 in the coming months. Unclear though is whether these bills will move to the floor individually or as one large package similarly to the FY18 omnibus. In any case, this work needs to be completed before FY19 begins on October 1 to avoid a government shutdown.

Action Item: Continue to education and advocate around LEND and UCEDD funding for FY19. Please use the AUCD Action Center to send an email (which you can personalize) to your Members of congress advocating and/or educating about the importance of LEND, and advocating and/or educating about the importance of UCEDD.

Infrastructure

The President has outlined a proposal to increase federal infrastructure funding by $200 billion over ten years, which the Administration claims will leverage another $1.3 trillion in additional investment from state and local governments and the private sector. The initiative would consist largely of grants and tax incentives to support projects that are likely to "eventually generate revenue", such as toll roads or certain transit system improvements.

The Administration has not identified a specific funding source for the plan, but the President’s budget includes a number of spending cuts that could potentially offset the cost of the proposal.

Democrats in the Senate have also released their own plan calling for over $1 trillion in federal infrastructure funding over the next decade. Unlike the President’s plan, the Democrats’ proposal would largely increase infrastructure spending by expanding existing federal programs and tax incentives, and create several new programs. Including, $62 billion in additional federal support for affordable housing and lead remediation initiatives through a combination of direct funding and enhanced tax incentives, such as expanding the Low-Income Housing Tax Credit; $50 billion to assist states, school districts, and community colleges in school construction and modernization projects; $25 billion to help communities better prepare for disasters through new grants and loan programs. This plan also identifies specific offsets that would "fully pay for its costs", largely by scaling back several provisions of the Tax Cuts and Jobs Act. Specifically, it proposes raising the top income tax rate to 39.6, returning the Alternative Minimum Tax ($429 billion) and estate tax ($83 billion) to their 2017 parameters, raising the corporate income tax to 25 percent, and closing the carried interest loophole ($12 billion).

Census

Last week, at least 12 states signaled that they would sue to block the Trump administration from adding a question about citizenship to the 2020 census, arguing that the change would cause fewer Americans to be counted and violate the Constitution. The NY State attorney general, Eric Schneiderman, said he was leading a multistate lawsuit to stop the move, and officials in CT, DE, IL, MA, NJ, NM, OR, PA, RI, and WA said they would join the effort; CA filed a separate lawsuit.

In addition, The National Association for the Advancement of Colored People (NAACP) plans to file a lawsuit against the Census Bureau, to force a more accurate count of minority populations. Calling the government’s preparation for the 2020 count "conspicuously deficient," the lawsuit alleges that the census violates a constitutional mandate to count all the people in the country and disproportionately harms African American and Hispanic populations.

Action Item: Congress can exercise its legislative authority in several ways, including holding hearings, introducing legislation, and expressing concerns or requesting revisions from the Commerce Department or Census Bureau. Contact your Congressional delegation to share your thoughts.

Health Care

Health and Human Services’ Health Resources and Services Administration has sought to change the definition of "knowingly and intentionally" violating the 340B ceiling price, a formal request to delay the regulation appears again on the website of the White House’s regulatory review office. The 340B program, the subject of much political debate, forces drug companies to offer steep discounts on outpatient drugs to hospitals and clinics that serve low-income communities. The drug industry has criticized the use of those discounts, prompting inquires by Congress. CMS cut what it pays for certain 340B drugs starting this year, putting payment more in line with acquisition costs.

Education

The Administration’s School Safety Commission, tasked with devising solutions to stop school violence, met for the first time on March 27 in a closed-door session that the Department of Education described as "an organizational meeting." The four panel members included: Education Secretary Betsy DeVos, Attorney General Jeff Sessions, Health and Human Services Secretary Alex Azar, and Homeland Security Secretary Kirstjen Nielsen.

Action Item: Share your input, expertise, and concerns related to school safety, particularly consideration for students who have disabilities to the commission’s email safety.

Money Follows the Person

Action Item: Continue educating your Members of Congress on the importance of Money Follows the Person (MFP) – particularly those members on the House Energy & Commerce Committee – in order to ensure that MFP is reauthorized and people with disabilities have access to their community. Please use this toolkit and chart, which shows when states will run out of funding, to help with your advocacy.

Bill numbers: EMPOWER Care Act – S. 2227 and HR 5306.

ADA Education and Reform ActH.R. 620

On March 29, U.S. Senator Tammy Duckworth (D-IL) and 42 of her colleagues wrote to Senate Majority Leader Mitch McConnell (R-KY) pledging to block a House Republican-led effort to curtail the civil rights of Americans living with disabilities. Together, the group of 43 Senators is large enough to block passage of HR 620, which Congressman John Lewis (D-GA) described as, "a bill that turns the clock backwards and strikes a devastating blow in the fight for civil rights." Senator Duckworth stated that "HR 620 would isolate Americans living with disabilities as the only federally-protected class of citizens forced to rely on "education," rather than strong enforcement, to exercise their basic civil rights". A full copy of the letter is available online here.

Action Items: 1) Thank the signers of this letter. 2) Continue to contact your Senators that have not signed on and share the critical importance of the ADA, which ensures inclusive and accessible communities. Please see last week’s In Brief for more information and resources.

2018 Disability Policy Seminar

Join the Trainee Orientation webinar today at 3:30pm EST, which will highlight what you can expect, how you should prepare, an opportunity to ask questions, and more!

Also, please remember to register:

· Any hill visits you have scheduled

· AUCD Trainee Summit on April 22

· Disability Policy Seminar, April 23-25

Leadership

On March 28th, the President announced he was removing David Shulkin as Secretary of Veterans Affairs. The announcement included his intention to nominate highly respected Admiral Ronny Jackson, MD and shared that in the interim, Honorable Robert Wilkie will serve as Acting Secretary.

Tuesdays with Liz: Disability Policy for All

The Tuesdays with Liz series is taking a break while Liz Weintraub is on detail working with the Senate Aging Committee. Tuesdays with Liz will return to a regular taping schedule and new episodes will air in the late Spring when Liz returns to AUCD. Until then, we will be highlighting some of our favorite Tuesdays with Liz episodes from this past year here and on social media at @AUCDnews.

This week we are revisiting Liz’s interview with Wandy Felty (family faculty at Oklahoma’s LEND) regarding LEND programs, which provide instrumental interdisciplinary training to professionals and advocates from a diverse range of backgrounds that enables them to best serve the health needs of people with disabilities.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

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Disability Policy News Special Omnibus Budget Edition

March 23, 2018 | Vol. XV, Issue 154
SPECIAL OMNIBUS BUDGET EDITION

On March 22, the House approved the $1.3 trillion FY18 omnibus spending package by a vote of 256-167 (see the full text and the Labor-HHS-Ed text). The bill then moved to the Senate who passed it early this morning. President Trump signed it this afternoon, avoiding a government shutdown. The bill will fund the government through the fiscal year ending September 30.

AUCD is pleased to share that this bill includes great news and appropriation wins for the programs AUCD advocates for:

Additionally, the bill includes important support for many programs connected to AUCD’s mission to advance policies and practices that improve the health, education, social, and economic well-being of all people with developmental and other disabilities, their families, and their communities by supporting our members in research, education, health, and service activities that achieve our vision:

  • Projects of National Significance (PNS) are funded at $12M (up from $10M). Of this amount, not less than $1M is to fund transportation assistance activities for older adults and persons with disabilities. The transportation activities should focus on the most cost-effective and sustainable strategies that can be replicated to other communities.
  • $140.56M for the National Center on Birth Defects and Developmental Disabilities (NCBDDD), ($3M increase)
  • $3M increase for DD Councils (reaching their goal of $76M)
  • $2M increase for Protection & Advocacy Agencies
  • Level funding for TIPSID programs ($11.8M)
  • Assistive Technology state programs were funded at $36M ($4M increase). In addition, Medicaid funding included $2M for new competitive grants to partner with State Assistive Technology Act Programs to develop and implement reutilization.
  • Inclusion of Kevin and Avonte’s Law (HR 4421 and S 2070).

Congratulations to you for your continued work to around these critical programs and the communication that is needed to ensure Congress understands and supports their importance.

Action Step

· Reach out to your congressional delegation and thank them for their support – our online system makes it easy!

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News March 26, 2018

March 26, 2018 | Vol. XV, Issue 154
Budget & Appropriations

On March 22, the House approved the $1.3 trillion FY18 omnibus spending package by a vote of 256-167; the following morning, the Senate also approved the bill by a vote of 65-32. The bill was then sent to the White House which was signed into law by the President, avoiding a government shutdown. The bill will fund the government through the fiscal year ending September 30.

Action Item: Please contact your Members of Congress and thank them for their support – our online email system makes it easy to send a template email or personalize your own! The system also includes a letter for Members who did not vote in favor of the bill.

Money Follows the Person (MFP)

Though MFP was not included in the Omnibus spending package, advocates are encouraged to continue educating your Members of Congress on the importance of this program – particularly those members on the House Energy & Commerce Committee – in order to ensure that MFP is reauthorized and people with disabilities have access to their community. Please use this toolkit to help with your advocacy. Please see joint letter by the National Association of Medicaid Directors, the National Association of State Directors of DD Services, and the National Association of States United for Aging and Disabilities, which requests Congress to extend MFP and allocate additional funding so that states can continue this valuable and cost-effective program.

Health Care

"Regulation to Alleviate State Burden"

On March 22, the Centers for Medicare & Medicaid Services (CMS) issued a notice of proposed rulemaking (NPRM) that would "provide state flexibility from certain regulatory access to care requirements within the Medicaid program". Specifically, the NPRM would exempt states from requirements to analyze certain data and monitor access when "the majority of beneficiaries receive services through managed care plans". CMS regulations separately provide for access requirements in managed care programs. Additionally, the NPRM would provide similar flexibility to all states when they make nominal rate reductions to fee-for-service payment rates. The NPRM proposes the following changes:

  • States with an overall Medicaid managed care penetration rate of 85% or greater (currently, 17 States) would be exempt from most access monitoring requirements.
  • Reductions to provider payments of less than 4% percent in overall service category spending during a State fiscal year (and 6% over two consecutive years) would not be subject to the specific access analysis.
  • When states reduce Medicaid payment rates, they would rely on baseline information regarding access under current payment rates, rather than be required to predict the effects of rate reductions on access to care, which states have found very difficult to do.

To make a comment regarding the proposed rule, please visit CMS website here.

Hearing

On March 20, the Subcommittee on Health, Employment, Labor, and Pensions, chaired by Rep. Tim Walberg (R-MI), held a hearing on "Expanding Affordable Health Care Options: Examining the Department of Labor’s Proposed Rule on Association Health Plans (AHPs)." A list of witnesses and archived webcast can be accessed here

IMPACT Comment Period

The Centers for Medicare & Medicaid Services (CMS) has contracted with RTI International and Abt Associates to develop cross-setting post-acute care transfer of health information and care preferences quality measures in alignment with the Improving Medicare Post-Acute Care Transformation Act of 2014 (IMPACT Act – PL 113-185). As part of its measure development process, CMS requests interested parties to submit comments on two draft measure specifications: 1) Medication Profile Transferred to Provider and 2) Medication Profile Transferred to Patient. The call for public comment period closes on May 3, 2018. View the public comment webpage for more information.

Education

Budget Hearing

On March 20, the House Committee on Appropriations held a hearing on the Department of Education FY 19 Budget. Secretary DeVos was the only witness. The recording can be accessed here.

Administration Updates

On March 20, Senate Finance Committee (Chairman Orrin G. Hatch, R-Utah) held a hearing on the nominations of John Bartrum to be an assistant HHS secretary, and Lynn Johnson to be an assistant HHS secretary for family support. Final decision has not yet been posted.

On March 19, the President announced his intent to nominate Sharon Fast Gustafson (VA), to be General Counsel of the Equal Employment Opportunity Commission for a term of four years; and Ann Begeman (SD) to be to be the Chair of the Surface Transportation Board.

Leadership

Mark Schultz of Nebraska, has been named the Commissioner of the Rehabilitation Services Administration, Department of Education. Mark Schultz has 34 years of experience in providing and developing disability-related services. For the last six years, he has been the Director of Nebraska VR focusing on training and employment for individuals with disabilities. He was the Assistive Technology Partnership Director for twenty years prior to his current role. More information on the announcement can be found on the White House Website. Schultz will have to be confirmed by the Senate before he can officially hold the position.

Dr. Robert Redfield has been selected as the next director of the US Centers for Disease Control and Prevention, the Department of Health and Human Services announced . The CDC Director position does not require Senate confirmation. Dr. Redfield will take his post on March 26.

Opioids

On March 19, the President unveiled new policies for tackling the opioid epidemic during a speech in New Hampshire, one of the states hit hardest by the crisis. This plan is outlined in three parts: 1) "Reduce drug demand through education, awareness, and preventing over-prescription", 2) "Cut off the flow of illicit drugs across our borders and within communities", and 3) "expand opportunities for proven treatments for opioid and other drug addictions". A main focus of this plan includes law-enforcement-focused policies that aim to increase penalties for drug dealing and trafficking, including mandatory minimums and the death penalty as well as cutting back on opioid prescriptions, hoping to reduce them by as much as one-third over three years. Many experts to the contrary have called for public health efforts focused on boosting access to treatment, adopting harm reduction strategies, and curtailing prescriptions to opioid painkillers while keeping the drugs available to patients who truly need them. They have also deemphasized punitive criminal justice approaches, which are, based on the research and past experiences, largely ineffective. AUCD will continue to monitor this proposal.

ADA Education and Reform Act

The ADA Education and Reform Act (H.R. 620), passed out of the House on February 16, by a vote of 225-192. AUCD is very concerned with how this bill would impact people with disabilities and the efforts to ensure communities are inclusive and accessible. Action Item: Continue to contact both your Senators and share the critical importance of the ADA and ask for their public support. Also see additional back ground/resources:

2018 Disability Policy Seminar

Please remember to register for the Disability Policy Seminar (DPS) and the AUCD Trainee Summit, which takes place on Sunday, April 22! DPS is a great opportunity to learn about disability policy, advance the grassroots movement for people with intellectual and developmental disabilities, advocate for access to health care, community living supports and civil rights, share your story with Members of Congress, and more. Remember to schedule meetings with your Senators and Representatives before you come to DC (tips sheets on how to do this will be shared soon).

Also, please remember to register for the Trainee Orientation webinar taking place on April 2nd at 3:3opm EST, which will highlight what you can expect, how you should prepare, an opportunity to ask questions, and more!

Voting

In 2016, according to Rutgers University, people with disabilities accounted for 35.4 million eligible voters. When you add family members in the same household, that number increases to 62.7 million eligible voters, or 25% of the total electorate. The US Census reported voter turnout for people with disabilities was 6.3% lower than among citizens without disabilities. You can be heard by registering to vote, updating active registration, and educating yourself about the electoral process.

Tuesdays with Liz: Disability Policy for All

The Tuesdays with Liz series is taking a break while Liz Weintraub is on detail working with the Senate Aging Committee. Tuesdays with Liz will return to a regular taping schedule and new episodes will air in the late Spring when Liz returns to AUCD. Until then, we will be highlighting some of our favorite Tuesdays with Liz episodes from this past year here and on social media at @AUCDnews.

This week we are taking a look back at Liz’s interview with Sara Var Geertruyden who spoke about engaging patients at every level of their healthcare services, empowering them to make informed and independent decisions about their own healthcare, and policies that can threaten this type of person centered care.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

Disability Policy News March 19, 2018

March 19, 2018 | Vol. XV, Issue 153
Budget & Appropriations

Congress is expected to pass an FY18 omnibus spending package before the current continuing resolution expires next Friday, March 23rd. AUCD expects to see the omnibus, which will fund the government through Sept. 30, this week. This is likely to be Congress’ last major bill before the 2018 mid-term elections, we’re watching to see which riders make it in. At the same time the appropriations process for FY19 is also underway.

Action Step: Please continue to educate your Members of Congress on the value of LENDs and UCEDDs. When able please share the ask for funding level for FY19.

Health Spending

Senators Lamar Alexander (R-TN) and Susan Collins (R-ME) may propose a new ACA Marketplace stabilization bill which could also be included in the omnibus spending package. The new version of the bill would include funding for cost-sharing reduction (CSR) payments, reinsurance funding, additional flexibility for states under Section 1332 waivers, and expanded eligibility for catastrophic plans. In addition to uncertainty about whether this proposal would actually lower premiums because of adjustments made after the Administration discontinued CSR funding, the bill is also controversial because of an additional requirement that federal funds could not be used for plans that cover abortion services. Other marketplace proposals that have been put forward would allow insurers to charge older adults up to five times as much as younger adults (a.k.a. an "age tax"), allowing short-term health insurance plans to be renewed, and expanding health savings accounts (please see February edition of In Brief for more information).

Health Care

Money Follows the Person

Two bipartisan bills that would improve access to healthcare and community living for people with disabilities have been introduced in both the House and the Senate and could be included in the spending package next week. The EMPOWER Care Act (S.2227) and its, recently introduced, House companion bill (H.R. 5306) would extend the Medicaid Money Follows the Person (MFP) Program and people with disabilities transition from institutions back to their communities. Please continue to educate your Members of Congress on the importance of MFP. AUCD created an MFP toolkit with talking points, pre-crafted email (that can be personalized, tweets, and more to assist advocate.

Dual Eligible Special Needs Plans

Section 50311(b) of the Bipartisan Budget Act of 2018 (Public Law No. 115-123) created a new Section of the Social Security Act in order to increase integration of Dual Eligible Special Needs Plans (D-SNPs). In particular, the statute directs Centers for Medicare & Medicaid Services (CMS) to: 1) develop unified grievance and appeals processes for D-SNPs; and 2) establish new standards for integration of Medicare and Medicaid benefits for D-SNPs. CMS is MMCOCapsmodel.

Quality Measures Report

The 2018 National Impact Assessment of CMS Quality Measures Reportis now available. This report serves to identify ways to reduced expenditures and improve upon the quality of care provided to patients in facilities and across settings nationwide. This report is used by the measure developer community, patients and families, clinicians, providers, federal partners, and researchers.

Hearing

Tomorrow, March 20, the subcommittee on Health, Employment, Labor, and Pensions will hold a hearing on "Expanding Affordable Health Care Options: Examining the Department of Labor’s Proposed Rule on Association Health Plans."

ADA Education and Reform Act

The ADA Education and Reform Act (H.R. 620), passed out of the Houseon February 16, by a vote of 225-192. AUCD is very concerned with how this bill would impact people with disabilities and the efforts to ensure communities are inclusive and accessible.

Action Step: Continue to contact both your Senators and share the critical importance of the ADA and ask for their public support to co-sign Tammy Duckworth’s letter. Also see additional back ground/resources:

Housing

On March 22, the Senate Committee on Banking, Housing, and Urban Affairs will meet to conduct a hearing entitled, "Oversight of HUD." The witness will be Ben Carson, Secretary of Housing and Urban Development. Live webcast is available here.

Home and Community Based Services

The National Disability Navigator Resource Collaborative announced the HCBS Business Acumen Resource Center’s new website, HCBSBusinessAcumen.org. The HCBS Business Acumen Center is a resource center for community-based organizations (CBOs) that serve individuals with disabilities. The resource center provides tools, resources and examples of promising practices that promote the sustainability of disability-focused CBOs.

2018 Disability Policy Seminar

Please remember to register for the Disability Policy Seminar (DPS) and the AUCD Trainee Summit, which takes place on Sunday, April 22! DPS is a great opportunity to learn about disability policy, advance the grassroots movement for people with intellectual and developmental disabilities, advocate for access to health care, community living supports and civil rights, share your story with Members of Congress, and more. Remember to schedule meetings with your Senators and Representatives before you come to DC (tips sheets on how to do this will be shared soon).

Also, please remember to register for the Trainee Orientation webinar taking place on April 2nd at 3:3opm EST, which will highlight what you can expect, how you should prepare, an opportunity to ask questions, and more!

Disaster Response – US Territories

On March 19, Kaiser Family Foundation hosted a briefing "Health Care in Puerto Rico and the U.S. Virgin Islands: A Six-Month Check-Up After the Storms". Speakers included: Joshua Barnes, Acting Director of Recovery, Rafael Rodríguez-Mercado, Secretary of Health for Puerto Rico, Ivonne Rivera-Hernández, Executive Director of HealthproMed, Bernard A. Wheatley, Chief Executive Officer of the Schneider Regional Medical Center, and Representative Stacey Plaskett (U.S. Virgin Islands), who provided remarks on Medicaid caps and other health care issues in the US territories. Archived recording is available here.

Also see Representative Plaskett’s legislation Improving the Treatment of the U.S. Territories Under Federal Health Programs Act of 2017 (HR 2404).

Tuesdays with Liz: Disability Policy for All

The Tuesdays with Liz series is taking a break while Liz Weintraub is on detail working with the Senate Aging Committee. Tuesdays with Liz will return to a regular taping schedule and new episodes will air in the late Spring when Liz returns to AUCD. Until then, we will be highlighting some of our favorite Tuesdays with Liz episodes from this past year here and on social media at @AUCDnews.

This week we are taking a look back at Liz’s interview with Tim Shriver, Chairman of the Special Olympics, who discussed the mission of the organization and the importance of including people with intellectual and developmental disabilities in sports.

For more from AUCD, follow @AUCDNews and like AUCD on Facebook

For updates from our Executive Director Andy Imparato, follow @AndyAUCD.

For definitions of terms used in In Brief, please see AUCD’s Glossary of Legislative Terms

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