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.
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.
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:
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.
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.
A network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families, and communities.
