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Washington DC Update 7/20/22
Legislative Updates
What a difference a week makes. Senate Democrats are zeroing in on a health-focused reconciliation effort after Sen. Joe Manchin (D-WV) expressed opposition to climate and tax-related policies within the filibuster-proof bill. It sounds as though the only health-focused measures in this bill will be for drug pricing and an extension (likely for 2 years) of the Affordable Care Act (ACA) premium subsidies. The next stop for the bill is the Senate parliamentarian for a review to ensure the bill complies with Senate rules, and then onto the floor for a vote.

The Senate appropriations process appears to be mired in disagreements over topline spending figures (meaning the levels of funding). Many are assuming that this gridlock will continue over the summer. If so, negotiations would resume just after Labor Day with the September 30 deadline for government funding looming, thus making the need for a continuing resolution likely. The House appropriators, on the other hand, are working through a package of bills and expect to pass something prior to the August recess. 

Autism Family Caregivers Act (S.4198)
Senators Bob Menendez (D-NJ) and Susan Collins (R-ME) introduced bipartisan, bicameral legislation that would provide families of children with Autism the support and training needed to provide quality support to their children. The Autism Family Caregivers Act establishes a five-year caregiver skills pilot program to award grants to nonprofits, community health centers, or hospitals to provide skills training to family caregivers of children with Autism. The training will teach family caregivers how to use everyday routines and home activities to improve the mental and physical well-being of such children and their caregivers. Caregivers will be trained to address communication skills, daily living skills, social engagement, and behavior management. The grants will provide for 25 pilot programs in at least 15 states.
From the Administration
The Department of Health and Human Services (HHS) announced an extension of the COVID-19 public health emergency (PHE) for an additional 90 days.
  • Effective July 15, 2022, this extension marks the continuation of several temporary authorities afforded under the PHE, including continuous enrollment requirements, waivers of telehealth restrictions, and additional federal medical assistance percentage (FMAP) increases, among other items.
SAMHSA: 988 is LIVE!
The Substance Abuse and Mental Health Services Administration (SAMHSA) provides this resources and information page to help states, territories, tribes, mental health and substance use disorder professionals, and others looking for information on understanding the background, history, funding opportunities, and implementation resources for strengthening suicide prevention and mental health crisis services.

HHS OCR: HIPAA Violations and Investigations
The Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced the resolution of eleven investigations in its Health Insurance Portability and Accountability Act (HIPAA) Right of Access Initiative, bringing the total number of these enforcement actions to thirty-eight since the initiative began. OCR created this initiative to support individuals' right to timely access to their health records at a reasonable cost under the HIPAA Privacy Rule.

HIPAA gives people the right to see and get copies of their health information from their healthcare providers and health plans. After receiving a request, an entity that is regulated by HIPAA has, absent an extension, 30 days to provide an individual or their representative with their records in a timely manner.

WEBINAR from NCD: Quarterly meeting
Monday, July 25 | 12:00 - 4:00 pm ET
Join the National Council on Disability (NCD) for our next quarterly business meeting. This meeting will include a discussion on proposed additions to the NCD Health Equity Framework; a panel on the U.S. Supreme Court’s recent Cummings v. Premier Rehab Keller, P.L.L.C. decision with Q&A; and a public comment period for community feedback on its impact.

WEBINAR from MACPAC: Special Meeting on Medicaid Redeterminations
Wednesday, July 27 | 1:30 pm ET
The Medicaid and CHIP Payment Access Commission (MACPAC) announced it will hold a special meeting to discuss challenges that state Medicaid programs may face when the COVID-19 public health emergency ends and Medicaid eligibility redeterminations commence
WEBINAR from NCAPPS: Choosing a Health Care POA
Wednesday, July 27 | 3:00 - 4:30 pm ET
From the National Center on Advancing Person-Centered Practices and Systems (NCAPPS): Recent research describes some challenges with advance care planning. For example, people change their minds, and it is hard for people to imagine into the future what their healthcare wishes may be when they do not have personal experience on which to draw. Additional research also identifies what works, and what is useful and effective practice. One key is having a trusted person who can act on the person’s behalf when they are unable to act and formalizing that relationship in a healthcare power of attorney (POA). 
This session on advance care planning and healthcare decision making will focus on four critical elements in healthcare decision making and advance care planning:
  1. How do you help someone identify the person “who” can serve as a healthcare power of attorney?
  2. What options exist for people who have no unpaid supports in their lives? What is the role of the service provider and how can we help people find that person “who” can serve as a decision maker?
  3. What are the implications of culture on helping someone identify “who” can be their healthcare power of attorney?
  4. What is the role of state surrogate decision-making laws in designating “who” will make a healthcare decision?
NCAPPS webinars include ASL interpretation and live captions in both English and Spanish. If you require any additional accommodations, please email Saska Rajcevic.
Briefs of Interest to CYSHCN Policy
Kaiser Family Foundation (KFF) Issue Brief: Medicaid Public Health Emergency Unwinding Policies Affecting Seniors & People with Disabilities
With the Public Health Emergency extended until at least October 13, 2022, states are afforded more time to plan and prepare for unwinding. Centers for Medicare and Medicaid Services guidance recognizes that returning to normal operations when the PHE does end will require planning to avoid inappropriate coverage loss as states review eligibility for a large volume of enrollees.

This issue brief describes anticipated enrollment changes in pathways based on old age or disability (“non-MAGI” meaning non-modified adjusted gross income) after the PHE ends; state enrollment and renewal policies for non-MAGI groups as of January 1, 2022; and state plans for resuming normal operations when the PHE ends. The data were collected from March through May 2022 in KFF’s survey of Medicaid state eligibility officials. Overall, 50 states and the District of Columbia responded to the survey, though response rates for specific questions varied.
Key findings include the following:
  • Most states reported that non-MAGI enrollment increased during the COVID-19 PHE, and most states anticipate coverage losses at the end of the PHE. Of the 37 states responding, states most frequently cited change in income, followed by returned mail or inability to contact the enrollee as the primary reasons for anticipated coverage losses. A median of 10 percent of non-MAGI enrollees are expected to lose coverage at the end of the PHE (14 states responding).
  • Staffing shortages and enrollee confusion were the most frequently identified issues expected to affect non-MAGI enrollees as states return to normal operations when the PHE ends.
  • Most states (23 of 35 responding) currently renew eligibility for a small share (<25%) of non-MAGI enrollees on an ex parte basis (without requiring information from the enrollee). However, a majority of states have adopted at least one strategy to increase the share of ex parte renewals including relying on SNAP data without conducting a separate Medicaid determination (12 states), automating data checks (12 states), and expanding the number and type of electronic data sources used (11 states).
  • Most states are planning to partner with other entities, such as health plans, providers, or community-based organizations, to provide information and/or assistance to seniors and people with disabilities who need to renew Medicaid eligibility or transition to other coverage (such as Medicare or Marketplace coverage) after the PHE ends.

Manatt Health: In Pursuit of Whole Person Health Initiatives in Managed Care Contracts
In October 2020, Manatt Health published “In Pursuit of Whole-Person Health: A Review of Social Determinants of Health (DOH) Initiatives in Medicaid Managed Care Contracts and 1115 Waivers” which identified common, emergent, and leading-edge practices of states addressing DOH. Now Manatt has updated analysis with new insights from a review of 15 states that have undertaken significant changes to their managed care contracts since the publication of the original survey (Arizona, California, Colorado, Hawaii, Kentucky, Louisiana, Minnesota, Nevada, Ohio, Oregon, Tennessee, Virginia, Washington, West Virginia and Wisconsin). For those 15 states, Manatt also reviewed new approved 1115 waivers. These states are geographically, demographically, and politically diverse from each other and have different levels of emphasis on DOH in their Medicaid managed care contracts—and as such, serve as a good sample of national trends. Given that racism also has been identified as a driver of health, Manatt has added “health equity” as a new area of focus. In addition, they provide a fresh look at cutting-edge topics, including in-lieu-of services (ILOS), community investment requirements, and DOH-related data sharing and report requirements.
A summary of highlights from the updated report can be found HERE. To download a free infographic spotlighting key findings—including a state-by-state snapshot of contract provisions by DOH domain—click here. To register for their webinar—sharing fresh insights from our latest research and discussing new strategies and next steps—click here

Health Affairs blog post: Person-centered care and Triple Aim
As detailed in an article in Health Affairs, "Person-centered care refers to 'providing care that is respectful of and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.'" Person-centered care is a core pillar of quality health care, and there have been a number of efforts to expand it. Despite these efforts, the value of person-centered care is still underappreciated when it comes to performance measurement. The article further discusses how person-centered care has powerful effects on health and projected costs, how it adds to preventative care, and how it could redefine the triple aim of addressing care, health, and cost.

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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.