Washington DC Update 10/15/14 - Submitted

Washington DC Update 10/15/14 - submitted

{Don’t forget to checkWashington out the Family Voices/NCFPP DC Update ACA webpage and the most recent NCFPP blog post on coverage of children “aging out” of Medicaid.} July 25, 2018

Greetings from Washington! It’s been an active time in DC. The House has been busy preparing for its August recess, and has passed several health related bills. The administration has been busy as well. It has announced a second 30- day public comment period for the controversial Kentucky and Mississippi Medicaid work-requirement waivers. It has also released its plan for reunifying immigrant children and their families they had separated at the border. The Health Resources and Services Administration has announced a special challenge (with an award) to encourage the creation of technology to improve care coordination for children and youth with special health care needs. And the Medicaid and CHIP Payment and Access Commission has released an issue brief on the characteristics of and access to care for CYSHCN.

Not only that, but it will soon be the 28th anniversary of the Americans with Disabilities Act (July 26) and the 53rd anniversary of Medicaid and Medicare (July 30th). [Check out these new state Medicaid and CHIP snapshots.]

Finally, an important announcement: Do not eat this cereal: CDC issues blunt warning about Honey Smacks as outbreak grows to 100 (Washington Post, 7/12/18).

UPCOMING WEBINARS AND CALLS (All topics; in chronological order, by first webinar in a series where applicable.)

NEW Managed Long-Term Services and Supports (MLTSS) for People with Intellectual and Developmental Disabilities: Strategies for Success Wednesday, July 25, 12:30 pm-1:30 pm ET National Association of States United for Aging and Disabilities (NASUAD)

Ticket to Work and Reasonable Accommodations Wednesday, July 25, 3:00 pm-4:00 pm ET Social Security Administration

NEW Brain Under Construction: Building Pathways to Resilient Futures Thursday, July 26, 12:00 pm-1:00 pm ET HHS Partnership Center Summer Webinar Series, National Institute on Drug Abuse (NIDA)

Family Voices, Inc. • Mailing Address: P.O. Box 37188, Albuquerque, NM 87176 • Physical Address: 3701 San Mateo Blvd NE, Suite 103, Albuquerque, NM 87110 • Phone: 505-872-4774 • Toll Free: 888-835-5669 • Fax: 505-872-4780 • Website: www.familyvoices.org 1 The HOPE Initiative Launch Webinar Thursday, July 26, 11:00 am ET National Collaborative for Health Equity and Texas Health Institute in partnership with Virginia Commonwealth University’s Center on Society and Health The Health Opportunity and Equity (HOPE) Initiative is a new resource that provides data on health, opportunity, and equity for all 50 states and the District of Columbia, funded by Robert Wood Johnson Foundation.

A Conversation on Care Coordination for Children with Medical Complexity: Whose Care Is It, Anyway? Thursday, July 26, 1:00 pm-2:00 pm ET Lucile Packard Foundation for Children’s Health See also A Conversation on Models of Care Delivery for Children with Medical Complexity, an earlier webinar in this series; webpage also has related links.

Ask TRICARE Thursday, July 26, 1:00 pm-2:00 pm ET Military One Source This Q&A webinar will include a panel of subject matter experts to answer your questions about TRICARE health care, pharmacy, and dental programs. Read more.

Collaborating with Non-Traditional Partners to Develop Diverse Family Leaders (for family organizations) Thursday, July 26, 1:30 pm-2:30 pm ET National Center for Family/Professional Partnerships

Outreach and Enrollment Strategies to Reach Rural Communities Tuesday, July 31, 1:00 pm-2:30 pm ET Insure Kids Now (HHS Connecting Kids to Coverage National Campaign)

Innovations in Education for Youth Recipients of Supplemental Security Income (SSI) (Part 3 of a 5-part series on transitioning to employment for youth receiving SSI) Tuesday, July 31, 2:00 pm-3:00 pm ET

Health and Human Services Partnership Success Story Tuesday, July 31, 3:30 pm-4:30 pm ET Alliance for Strong Families and Communities

Advisory Committee on Heritable Disorders in Newborns and Children (webcast) Thursday, August 2, 9:30 am-3:00 pm ET Office of Disability Employment Policy, U.S. Department of Labor - Register by Monday, July 30, at noon ET - Comments due July 27

Family Voices, Inc. • Mailing Address: P.O. Box 37188, Albuquerque, NM 87176 • Physical Address: 3701 San Mateo Blvd NE, Suite 103, Albuquerque, NM 87110 • Phone: 505-872-4774 • Toll Free: 888-835-5669 • Fax: 505-872-4780 • Website: www.familyvoices.org 2 NEW What Families, Family-based Support Organizations and EHDI Programs Want: Findings from a National Needs Assessment Thursday, August 2, 1:00 pm-2:00 pm ET Hands & Voices™

NEW Igniting Change from the Ground Up: Uplifting Best Practices for Community Organizing and Leadership Engagement Tuesday, August 7, 2:00 pm-3:00 pm ET Prevention Institute

Demonstrating Medicaid's Value through Storytelling Wednesday, August 8, 3:00 pm ET Georgetown Center on Children and Families

NEW ACEs: The Role of Life Experiences in Shaping Brain Development Thursday, August 9, 12:00 pm-1:00 pm ET HHS Partnership Summer Webinar Series

THE ADMINISTRATION Reunification of Immigrant Families (Updated) As reported in last week’s Update a federal court ordered that children under age five be reunited with their families by July 10, and that all other children be reunited with their families by July 26. The administration did not meet the first deadline; only about half of the young children were reunited with their parents, in part because officials were trying to ensure that reunification would be safe for the children and they would be reunited with actual family members. In a July 13 statement HHS said that it has identified 2,551 minors 5 to 17 years of age in the department’s custody who could potentially be eligible for reunification with a parent in the custody of DHS.

Update:

Special Pre-Unification Screening For “A Special Needs Child with A Disability.” On July 18, the Department of Health and Human Services (HHS) announced that it had published its plan for reunifying immigrant children with their parents --The Tri-Department Plan for Stage II of Family Reunification.

Of note -- the plan states: “A home study shall be conducted for… a special needs child with a disability.” This step for placing an “unaccompanied alien child” -- which is how the children separated at the border are being classified -- is actually mandated by the William Wilberforce Trafficking Victims Protection Act of 2008 (at page 122 STAT. 5078, sec. 235(c)(3)(B)); 8 U.S.C. §1232(c)(3)(B)). It is not clear, however, how this requirement is being implemented, given that the parents in the current situation do not have a “home” to study.

Family Voices, Inc. • Mailing Address: P.O. Box 37188, Albuquerque, NM 87176 • Physical Address: 3701 San Mateo Blvd NE, Suite 103, Albuquerque, NM 87110 • Phone: 505-872-4774 • Toll Free: 888-835-5669 • Fax: 505-872-4780 • Website: www.familyvoices.org 3 Reunification Status On July 19, the administration reported that about 60 percent (1,606) of the children between ages 5 and 17 could be reunited with their parents. The remaining children could not be reunited because their parents had not yet been interviewed, have criminal records or otherwise should not be reconnected, or have waived their right to be unified with their children. (Some parents believe that their children will have a stronger asylum claim than the parent, so elect to leave without their children.) See 364 Children Reunited with Families After Being Separated at Border (The Hill, 7/19/18). During a July 20 status hearing before the court, HHS reported that it had reunited 450 children between the ages of 5 and 17 with their parents. The judge was pleased with this progress. See Judge Praises Administration On Reunifications (The Hill, 7/20/18). July 26 is the deadline by which all children are supposed to be reunited with their parents (assuming safety clearances).

CONGRESS

Electronic Visit Verification (EVV) Legislation Ready for President’s Signature On July 17, the Senate approved a House-passed bill to delay for one year (until January 1, 2020) the implementation of a requirement that Medicaid agencies adopt “electronic visit verification” (EVV) for personal care services provided at an individual’s home. The legislation also includes language to express a “sense of Congress” that the Centers for Medicare and Medicaid Services (CMS) should hold at least one public meeting in 2018 to solicit stakeholder feedback on its May 2018 guidance on EVV, and should continue to communicate with stakeholders, including family caregivers, during EVV implementation. The bill is now ready for the president’s signature. Disability advocates had sought this legislation because of concerns that EVV has the potential to invade the privacy of people with disabilities, limit their independence and community access, and lead to cuts in services. A delay will give advocates more time to work with Congress, CMS, and the states to address these concerns.

House Passes Several Health Bills As reported by the House Energy and Commerce Committee, the House passed several bipartisan health-related bills this week:

• The Palliative Care and Hospice Education and Training Act (H.R. 1676), which would direct HHS to award grants to improve the training of palliative-care health professionals, increase awareness about the benefits and services of palliative care, and enhance research on palliative care through leveraging existing authorities and funds at the National Institutes of Health (NIH).

• The Dr. Benjy Frances Brooks Children’s Hospital GME Support Reauthorization Act of 2018 (H.R. 5385), which would reauthorize the Children’s Graduate Medical Education (CHGME) program for five years.

• The National Suicide Hotline Improvement Act (H.R. 2345), which would direct the Federal Communications Commission (FCC), in consultation with the Substance Abuse and Mental Health Services Administration (SAMHSA), to study and report on the feasibility of designating an N11 dialing code to be used for a national suicide prevention and mental health crisis hotline system. See House Passes Bipartisan Broadband, Public Safety Bills (Energy & Commerce Committee, 7/23/18). Family Voices, Inc. • Mailing Address: P.O. Box 37188, Albuquerque, NM 87176 • Physical Address: 3701 San Mateo Blvd NE, Suite 103, Albuquerque, NM 87110 • Phone: 505-872-4774 • Toll Free: 888-835-5669 • Fax: 505-872-4780 • Website: www.familyvoices.org 4

“Medicare-for-All” Caucus Launched in House On July 20, House Democrats launched a "Medicare-for-All" congressional caucus with the intention of educating other lawmakers and staff on the basics of a government-run, single-payer health care system, and of examining how other such systems operate in other countries. There are 70 founding caucus members. A House "Medicare-for-All" bill now has 122 co-sponsors (out of 435 House Members), which is nearly two thirds of all House Democrats. In the Senate, a separate “Medicare-for- All” bill has been introduced by Senator Bernie Sanders (I-VT). That bill has 16 Democratic co-sponsors. See Dozens of Democrats Launch 'Medicare for All' Caucus (USA Today, 7/20/18).

MEDICAID AND CHIP NEWS, INFORMATION AND RESOURCES Guidance on Medicaid Provider Directories On July 17, the Center for Medicaid and CHIP Services issued a State Medicaid Directors letter (SMD # 18-007) setting forth detailed directions to states for implementing the requirements of Section 5006 of the 21st Century Cures Act (Cures Act). Section 5006 of the Cures Act requires states that provide medical assistance on a fee-for-service basis or through a primary care case-management system to publish a provider directory on the state agency’s public website not later than January 1, 2017, and to update this directory at least annually. The guidance also includes a sample Medicaid State plan amendment preprint that states can use to implement the requirement if needed.

Medicaid Waivers

Kentucky Waiver As reported in the July 3 Washington Update (under “Courts”), a federal court vacated the Department of Health and Human Services (HHS) approval of a Kentucky Medicaid waiver proposal to impose work requirements on Medicaid beneficiaries. The ruling does not affect the status of other state work- requirement waivers. See Verma: Court Ruling Won’t Close Door on Other Medicaid Work Requests (Politico, 7/17/18). The basis of the court’s decision was the failure of the Centers for Medicare and Medicaid Services (CMS) to consider a “salient factor” in deciding to grant a waiver – the waiver’s impact on furnishing medical assistance.

On July 18 CMS announced that it would provide another 30-day public comment period for the Kentucky waiver. The comment period ends on August 18. See Trump Administration to Give Kentucky Medicaid Work Requirement a Second Chance (Washington Post, 7/20/18).

Mississippi Waiver Mississippi has also requested a waiver to establish work or community engagement requirements for Medicaid beneficiaries. Under that proposal, those who are employed the required number of hours and get paid minimum wage will then make too much to qualify for Medicaid. (Those who meet non- paying community engagement requirements would still be eligible.) In light of an amendment to the waiver proposal, CMS is providing another comment period for the Mississippi proposal as well. Comments are due on August 18.

Kentucky Will Re-Establish Medicaid Vision and Dental Benefits After the court ruling vacating approval of Kentucky’s Medicaid work-requirement waiver, Governor Matt Bevin (R), announced that the state would no longer provide vision or dental benefits for the adults in the Medicaid expansion population. On July 19, the state announced that these benefits would be restored, retroactive to July 1. See Reversal: Kentucky Restoring Medicaid Benefits for Thousands (Associated Press, 7/20/18).

AFFORDABLE CARE ACT (ACA) Trump Administration Preparing Fix for Obamacare Risk Payments (Bloomberg, 7/19/18) As reported earlier, the administration announced that it would no longer pay insurance companies the risk-adjustment payments established by the Affordable Care Act (ACA). These payments essentially transfer funds from insurance plans with low-risk consumers to plans with higher-risk ones. The administration based its decision on a pending court case, although some observers and stakeholders disagreed about whether this was necessary. Now the administration is preparing a regulation that would resolve the issues in the lawsuit and thus allow the resumption of these payments.

To Understand How Consumers Are Faring in the Individual Health Insurance Markets, Watch the States (Georgetown University Health Policy Institute Center on Health Insurance Reforms CHIRblog, July 20, 2018) Through both inaction and design, federal policymakers have put the onus on states to ensure access to affordable, adequate health insurance. In a new work for The Commonwealth Fund, Georgetown researchers are launching an interactive map that will track and describe state actions likely to affect residents’ access to individual market coverage.

TRICARE FEDVIP is Coming: Get to Know Dental and Vision Plans Today (TRICARE Benefit Update, 7/17/18)

OTHER NEWS, INFORMATION AND RESOURCES MACPAC Report on Children and Youth with Special Health Care Needs The congressionally-created Medicaid and CHIP Payment and Access Commission (MACPAC), just completed an issue brief -- Access in Brief: Children and Youth with Special Health Care Needs—which compares the characteristics of children and youth with special health care needs to those without

• were more likely to have Medicaid coverage than children and youth without special health care needs; • differed with regard to use of services depending on whether they had Medicaid, private coverage, or were uninsured (e.g., although most children and youth with special health care needs who had Medicaid coverage reported a medical visit in the past year, these rates were lower than those with private coverage, but higher than those who were uninsured); and • reported higher rates of unmet need if they had Medicaid coverage than if they had private coverage, although the children with Medicaid were more likely to report that the program covered benefits and services to meet their needs compared to their privately insured counterparts.

HRSA Challenge to Improve Care Coordination for CSHCN through Tech Innovations In August, the Health Resources and Services Administration (HRSA) will launch the Care Coordination for CSHCN Challenge – a competition intended to encourage the creation of tech innovations to help families and case managers with the care and coordination of children with special health care needs. Prizes of $375,000 will be awarded. Get updates about the Challenge.

HHS Working Group on Drug Importation On July 19, the Department of Health and Human Services (HHS) announced that Secretary Alex Azar requested FDA Commissioner Scott Gottlieb to establish a working group to examine how to safely import prescription drugs from other countries in the event of a dramatic price increase for a drug produced by one manufacturer and not protected by patents or exclusivities. See Trump Administration to Explore Drug Imports to Counter Price Hikes (Washington Post, 7/19/18).

RESOURCES:

WORTH REPEATING: Referral and Care Coordination Forms (National Academy for State Health Policy) On this page, you can find examples of referral forms that are compliant with federal health (HIPAA) and education (FERPA) privacy and confidentiality requirements; feedback forms to inform primary care providers of the results of evaluations; and referral guidelines. The site also provides a map showing states that have standardized referral forms.

YOUR INPUT SOUGHT [Listed in order of due date, if applicable.]

NEW CMS Tribal LTSS Program Survey This survey is being conducted by the Centers for Medicare and Medicaid Services (CMS) to help them develop a list of tribally operated long-term services and supports (LTSS) programs across Indian Country. The results will enable the sharing of LTSS best practices across Indian Country. Tribes and Family Voices, Inc. • Mailing Address: P.O. Box 37188, Albuquerque, NM 87176 • Physical Address: 3701 San Mateo Blvd NE, Suite 103, Albuquerque, NM 87110 • Phone: 505-872-4774 • Toll Free: 888-835-5669 • Fax: 505-872-4780 • Website: www.familyvoices.org 7 tribal organizations may provide these services directly, or through a contract or agreement with an outside organization.

Research Survey for Caretakers of Women with Intellectual and Developmental Disabilities A researcher at Brandeis University is conducting a study on sexual and reproductive health care for women with intellectual and developmental disabilities. She is seeking family caregivers of such women to complete an online survey. The goal of the survey is to understand the perspectives and experiences of family caregivers about sexual and reproductive health care for women with intellectual and developmental disabilities. The survey is available here.

OF POSSIBLE INTEREST The Opioid Crisis: A Child’s Fight and a Mother’s Gain (HHS Blog, 7/18/18)

Bringing Trauma-Informed Care to Children in Need Can Ease Toxic Stress (STAT’s First Opinion, 12/6/17)

Children with Disabilities Endure Long Waits for Life-Changing Medical Equipment (Kaiser Health News, 7/19/18). This article is focused on California, and Juno Duenas, the executive director of the San Francisco-based Support for Families of Children with Disabilities – the state’s Family-to-Family Health Information Center – is mentioned in the article.

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We would love to hear any suggestions you might have about how to make the Update more useful to you. Does it provide the right amount of information? What parts are helpful and not so helpful? Please let us know!

And, as always, please feel free to contact us with any questions. Comments and questions can be directed to [email protected].

Yours truly, Janis Guerney Director of Public Policy Family Voices

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U40MC00149. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by, HRSA, HHS, or the U.S. Government.