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Washington DC Update 7/28/22
Legislative Updates
Time is running short for legislators to accomplish their goals prior to the August recess… just this week and next. Members are prioritizing items and leaving others until after Labor Day. Note: the Washington Update will also be on recess until after Labor Day.
Positive COVID tests for Senator Manchin and others have stalled this week’s anticipated vote on this bill. However, assuming the Senate is able to clear the legislation at some point in the coming weeks, House lawmakers could return during the third or fourth week of August to pass the bill and send it to President Biden's desk. Details still remain fuzzy as to what the reconciliation includes.

The House is already delayed in its goal of voting on several bills prior to recess. On the Senate side, the appropriations process at large has been bogged down by various disagreements. A continuing resolution (CR) will likely be needed to keep the government funded past the September 30 deadline.

Telehealth Flexibilities
Members of the House are slated to consider a bipartisan bill that would extend certain COVID-19 telehealth flexibilities past the end of the public health emergency (PHE), such as audio-only, who can provide telehealth, and types of telehealth. The Rules Committee is slated to meet today to develop the rule and possibly approve amendments to the underlying bill. While the measure will likely pass with support on both sides of the aisle, it is unclear where the Senate currently stands on the House's version.

Legislator Letter to the Social Security Administration (SSA)
Senate Finance Committee Chair Ron Wyden, D-Ore., Social Security, Pensions, and Family Policy Subcommittee Chair Sherrod Brown, D-Ohio, and Senate Special Committee on Aging Chair Bob Casey, D-Pa., today urged the Social Security Administration (SSA) to incorporate children in ongoing outreach efforts, to help families eligible for Supplemental Security Income (SSI).
You can find the text of the letter HERE, but the following is a key excerpt for CYSHCN: “We share President Biden and SSA’s priority to advance equity throughout the Federal Government, particularly among underserved communities, by removing barriers and increasing access to federal programs and services,” the senators wrote in a letter to Social Security Administration Acting Commissioner, Dr. Kilolo Kijakazi. “We also appreciate the agency’s recent efforts to expand its outreach efforts to vulnerable populations such as those experiencing homelessness, and committing to increase the number of SSI applications from underserved communities by 25 percent in Fiscal Year 2023.”

“However, none of these programs directly target children with disabilities,” the senators continued. “These initiatives leverage existing community networks, but typically interact with a smaller subset of the larger population and may ultimately exclude those who would be eligible...It is imperative that SSA’s programs are equitably accessible to those who need assistance, and we stand committed to working with you to expand outreach make those connections.” 
From the Administration
ICYMI: The 988 LIFELINE IS LIVE! You can connect to it HERE.

MCHB Funding Opportunity: Healthy Tomorrow Partnership for Children
Healthy Tomorrows Partnership for Children program supports community-based partnerships and collaborations aimed at promoting access to health care for under-resourced and underserved children, youth, and their families nationwide, through the implementation and evaluation of new or enhanced community-based projects and models of care. Recipients will implement community-based projects incorporating evidence-informed or evidence-based strategies or innovations to increase access to health care and preventive health services in rural and other underserved populations. Community-based partnerships and collaborations will support the establishment of these projects and advance innovations. 
A successful HTPCP project will accomplish the following objectives during the 5-year period of performance: 
  • Implement an innovative project to promote preventive child health services with at least one measurable outcome. 
  • Form new collaborative relationships with at least three community and/or statewide partners. 
  • Develop a sustainability plan that includes at least three community partnerships and at least one funding strategy. 
  • If applicable, assess improvement in health promotion and prevention efforts through the use of materials and/or anticipatory guidance from the Bright Futures for Infants, Children and Adolescents initiative.
NOTE for F2Fs: Consider approaching those who are currently funded under this program for future partnership opportunities.

CMS: Stakeholder call Medicaid and CHIP Continuous Enrollment Unwinding
On July 27 the Department of Health and Human Services (HHS) and the Centers for Medicare & Medicaid Services (CMS) held the third webinar in the monthly partner education series on Medicaid and Children’s Health Insurance Program (CHIP) Continuous Enrollment Unwinding. The recordings, transcripts, and slide decks from previous webinars can be found on the CMS National Stakeholders Call Webpage.

This month’s webinar focused on related outreach and engagement geared toward children, specifically highlighting a Back-to-School “mini campaign” and resources for partners to help share information with families during the Back-to-School season. CMS still advises you to encourage members in your network to update their contact information with their state Medicaid agency (find contact information at Medicaid.Gov/Renewals).

Upcoming Webinar Dates:
  • Wednesday, August 24 @ 12:00 p.m. ET
  • Wednesday, September 28 @ 12:00 p.m. ET
  • Wednesday, October 26 @ 12:00 p.m. ET
  • Wednesday, December 7 @ 12:00 p.m. ET

U.S. AbilityOne Commission: Final Rule
The U.S. AbilityOne Commission issued a final rule that prohibits payment of subminimum wages on contracts within the AbilityOne Program. Published in the Federal Register on July 21, 2022, the rule adds a new qualification requirement for nonprofit agencies seeking both initial and continuing qualifications to participate in the AbilityOne Program. Specifically, the rule requires these nonprofit agencies to certify that, when paying employees on AbilityOne contracts, they will not use certificates authorized under section 14(c) of the Fair Labor Standards Act (FLSA) of 1938.

Under the rule, individuals who are blind or have significant disabilities and who work on AbilityOne contracts will earn at least the Federal minimum wage, the applicable local or state minimum wage, or the applicable prevailing wage – whichever is highest.

The rule has an effective date of October 19, 2022, which is 90 days from its publication. It prohibits use of 14(c) certificates to pay employees on AbilityOne new contracts, extensions of contracts, and options. Nonprofit agencies may request an extension of up to 12 months to come into compliance. Requests for extension must be received by September 19, 2022. During the extension period, the nonprofit agency will not be awarded new Procurement List additions, absent exigent circumstances and a written request from the Federal customer.

HHS: Notice of Proposed Rulemaking Section 1557 of the ACA
U.S. Department of Health and Human Services (HHS) announced a proposed rule implementing Section 1557 of the Affordable Care Act (ACA)(Section 1557) that prohibits discrimination on the basis of race, color, national origin, sex, age, and disability in certain health programs and activities. This proposed rule restores and strengthens civil rights protections for patients and consumers in certain federally funded health programs and HHS programs after the 2020 version of the rule limited its scope and power to cover fewer programs and services.

The Section 1557 Notice of Proposed Rulemaking (NPRM) seeks to address gaps identified in prior regulations. In order to advance protections under this rule it:
  • Reinstates the scope of Section 1557 to cover HHS’ health programs and activities.
  • Clarifies the application of Section 1557 nondiscrimination requirements to health insurance issuers that receive federal financial assistance.
  • Aligns regulatory requirements with Federal court opinions to prohibit discrimination on the basis of sex including sexual orientation and gender identity.
  • Makes clear that discrimination on the basis of sex includes discrimination on the basis of pregnancy or related conditions, including “pregnancy termination.”
  • Ensures requirements to prevent and combat discrimination are operationalized by entities receiving federal funding by requiring civil rights policies and procedures.
  • Requires entities to give staff training on the provision of language assistance services for individuals with limited English proficiency (LEP), and effective communication and reasonable modifications to policies and procedures for people with disabilities.
  • Requires covered entities to provide a notice of nondiscrimination along with a notice of the availability of language assistance services and auxiliary aids and services.
  • Explicitly prohibits discrimination in the use of clinical algorithms to support decision-making in covered health programs and activities.
  • Clarifies that nondiscrimination requirements applicable to health programs and activities include those services offered via telehealth, which must be accessible to LEP individuals and individuals with disabilities.
  • Interprets Medicare Part B as federal financial assistance.
  • Refines and strengthens the process for raising conscience and religious freedom objections

HHS encourages all stakeholders, including patients and their families, health insurance issuers, health care providers, health care professional associations, consumer advocates, and government entities, to submit comments through regulations.gov.

Public comments on the NPRM are due 60 days after publication of the NPRM in the Federal Register. The Department will also be conducting a Tribal consultation meeting on August 10, 2022, from 2:00 p.m. to 4:00 p.m. Eastern Daylight Time. To participate, you must register in advance. Register here.

The NPRM may be viewed or downloaded here.

A fact sheet on the NPRM is available in English and 16 languages here.

CMS: Connecting Kids to Coverage Awards
The U.S. Department of Health and Human Services (HHS), through the Centers for Medicare & Medicaid Services (CMS), today awarded $49 million to organizations on the frontlines of reducing uninsured rates and connecting more children, parents, and families to health care coverage. In support of President Biden’s Executive Orders on Strengthening Medicaid and the Affordable Care Act, and HHS Secretary Xavier Becerra’s priority of expanding access to affordable, quality health care, these awards represent the largest investment CMS has ever made in outreach and enrollment through the Connecting Kids to Coverage program.
Grantees will provide enrollment and renewal assistance to children and their families, and — for the first time ever — to expectant parents to promote improved maternal and infant health outcomes. CMS issued 36 cooperative agreements in 20 states through Medicaid’s Connecting Kids to Coverage program. Grantees — including state and local governments, tribal organizations, federal health safety net organizations, non-profits, and schools — will each receive up to $1.5 million over three years to advance Medicaid and Children’s Health Insurance Program (CHIP) enrollment and retention.
Additionally, grantees will work on several unique activities of their own. They may:
  • Engage schools and other programs serving young people.
  • Bridge demographic health disparities by targeting communities with low coverage.
  • Establish and develop application assistance resources to provide high-quality, reliable Medicaid/CHIP enrollment and renewal services in local communities.
  • Use social media to conduct virtual outreach and enrollment assistance.
  • Use parent mentors and community health workers to assist families with enrolling in Medicaid and CHIP, retaining coverage, and addressing social determinants of health.
For a complete list of the grantees and more information on their work, visit insurekidsnow.gov.

White House: Efforts to Cut Costs for American Families 
The Biden Administration announced that, since the launch of GetInternet.gov in May, one million new households have signed up for the Affordable Connectivity Program (ACP). The program ensures that every American has access to reliable and affordable high-speed internet to ensure they can connect to services such as telehealth visits. In the announcement, Vice President Harris called on the nation’s governors to join the Administration’s enrollment drive. This Fact Sheet provides a more detailed overview and the call to action.

DOJ: Fraud investigations of telemedicine, testing, and durable medical equipment
The Department of Justice (DOJ) announced criminal charges against 36 defendants in 13 federal districts across the United States for more than $1.2 billion in alleged fraudulent telemedicine, cardiovascular and cancer genetic testing, and durable medical equipment (DME) schemes. The coordinated federal investigations with the HHS Office of Inspector General (OIG) primarily targeted alleged schemes involving the payment of illegal kickbacks and bribes by laboratory owners and operators in exchange for the referral of patients by medical professionals working with fraudulent telemedicine and digital medical technology companies. 
Department of Education Office for Civil Rights: Annual Report
U.S. Department of Education’s Office for Civil Rights (OCR) is pleased to release its Annual Report to the Secretary, the President, and Congress.
This report provides a snapshot of OCR’s accomplishments during the 2021 fiscal year, including:
  • Resolving 8,238 cases and initiating 17 proactive investigations, including 11 related to the COVID-19 pandemic;
  • Clarifying the application of Federal civil rights laws to both remote and in-person learning during the COVID-19 pandemic;
  • Addressing the obligations of schools, public agencies, and postsecondary institutions to students and children with long COVID;
  • Clarifying OCR’s interpretation of schools’ existing obligations under the 2020 amendments to the Department’s Title IX regulations, including the areas in which schools have discretion in their procedures for responding to reports of sexual harassment;
  • Hosting a virtual convening organized with the Department of Justice on Brown 67 Years Later: Examining Disparities in School Discipline and the Pursuit of Safe and Inclusive Schools, where students, educators, school administrators, civil rights attorneys, and researchers considered the impact of exclusionary school discipline policies and practices on our nation’s students, particularly students of color, students, with disabilities, and LGBTQI+ students; and
  • Announcing our plan to administer a 2021-22 Civil Rights Data Collection (CRDC), marking the first time OCR has conducted the CRDC in all covered schools two years in a row, which will help illuminate the effects of the COVID-19 pandemic on education equity.

OCR’s FY2021 Annual Report is available here.

For copies of past FY Annual Reports, please visit: https://www2.ed.gov/about/offices/list/ocr/congress.html

ACL: Opportunity for Public Comment
The Administration for Community Living (ACL) is announcing an opportunity for the public to comment on the proposed extension of the data collection requirements for the ACL Evidence-Based Chronic Disease Self-Management Education (CDSME) Program Information Collection, as published in the Federal Register.

The CDSME Grant Program awards competitive grants to implement and promote the sustainability of evidence-based CDSME programs that have been proven to provide older adults and adults with disabilities with education and tools to help them better manage chronic conditions such as diabetes, heart disease, arthritis, chronic pain, and depression. The data collection continues to be necessary for the monitoring of program operations and outcomes.

This notice solicits comments on:
  • burden estimates,
  • utility and quality of the information to be collected, and
  • ways to ensure ACL is gathering necessary and relevant demographic information to assess diversity and equity in evidence-based program scaling and participation.

CDSME program grantees represent a variety of organization types including state agencies, area agencies on aging, institutions of higher education, nonprofit organizations, and tribes. The respondents for this data collection are grantee staff, program leaders, and program participants.

The proposed data collection tools include:

You can email comments by 11:59 p.m. (EST) on September 19 to: Lesha Spencer-Brown at [email protected].

Additional Policy-Related Materials of Interest to CYSHCN
PHE Unwinding Resources
Chart: Flexibilities and Timelines To help states respond to the ongoing COVID-19 pandemic, the White House, the U.S. Department of Health and Human Services, and the Centers for Medicare and Medicaid Services have invoked their emergency powers to authorize temporary flexibilities in Medicaid and the Children’s Health Insurance Program. Congress’s legislative relief packages have provided additional federal support for state Medicaid programs, subject to certain conditions. The timeframes for these emergency measures are summarized in the chart, including the effective dates and expiration timelines dictated by law or agency guidance.

Article: Ensuring Continuity of Care for Individuals Transitioning from Medicaid to Marketplace: Post-PHE Considerations for States Published by Princeton University State Health Value Strategies (SHVS), this is the second expert perspective in a series about maintaining continuity of coverage and care during the PHE unwinding. The first expert perspective noted that state Medicaid agencies can mitigate disruptions by identifying high-risk enrollees and those in the middle of a course of treatment. 

You can find links to the collection of SHVS unwinding resources HERE.

NASHP Issue Brief: Expanded Investment in HCBS for Children and Youth
Under the American Rescue Plan Act, the federal government expanded funding to states’ Medicaid HCBS programs, including a one-year, 10-percentage-point increase in federal Medicaid matching funds for HCBS. Nearly three-quarters of states (36 states) plan to allocate these funds specifically toward strengthening youth-serving systems. Of those 36 states, 13 states include initiatives to strengthen pediatric HCBS workforce, 10 states identify supports for family caregivers of CYSHCN and 19 states outline efforts to expand access to HCBS Behavioral Health Services. This NASHP Issue brief provides details and links to proposals and approved plans in a number of these states.
NOTE for F2Fs: 7 states included proposals to increase training and peer support for families providing care to their children at home.

NASHP Map: Numeric caps on Children’s Respite Care
Respite care is a valuable service for family caregivers that provides a break from the demands of caregiving. Most states cover respite services through Medicaid waivers that provide a range of home and community-based services, but many cap the amount of respite care covered.

Many states put a numeric cap on respite care (set limit of hours or days per service year), but caps vary widely from waiver to waiver. The cap per service year for adults ranges from 9 days (Tennessee) to 50 days (Arkansas) and the cap for children ranges from 7 days (Florida) to 180 days (Minnesota). Some states use other methods to determine service amounts, such as assessed need in an individual’s service plan.

This map, the first in a series, explores numeric caps on respite services for adults and children.

Webinar: Unifying the Field: Navigating Patients to Financial and Social Supports
The navigation field refers to financial advocates, patient and nurse navigators, community health workers, promotores de salud, and many others. They may hold different titles, but common ground lies in their actions: helping patients and families address their most pressing concerns of daily life.
This webinar is the first of a two-part series featuring field experts who will discuss the common thread that unites them and opportunities for advancing shared goals. 
Policy Director of the National Patient Advocacy Foundation, Nicole Braccio, will moderate this expert panel including:
  • Ashton Nesmith-Kochera, Board Certified Patient Advocate and NPAF Volunteer
  • Jordan Karwedsky, Financial Counselor, HSHS St. Vincent Hospital Cancer Centers
  • Karen Harwood, MSW, Director of Community Programs, Palm Beach County Medical Society Services
  • Michelle Proser, Senior Director, Healthcare Solutions at Financial Health Network
Wed, Aug 3 at 12 pm ET REGISTER HERE

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Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families--including those of cultural, linguistic and geographic diversity--in order to improve healthcare services and policies for children.