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Washington DC Update 1/14/2020
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The Centers for Disease Control and Prevention (CDC) has created a new webpage for coping with stress in the difficult times resulting from the COVID-19 pandemic.

Greetings from Washington, DC, and best wishes for a healthy, happy, and peaceful 2021.  
The major issues covered in this Update are:
  • Enactment of the COVID-relief and FY 2021 appropriations bill
  • Medicaid news, including:
  • Extension of the Public Health Emergency (PHE) and consequent extension of the enhanced federal match, maintenance-of-effort requirements, and flexibilities in telehealth and waivers.
  • Issuance of guidance on transitioning out of PHE rules when the time comes; 
  • Granting of a "block grant" waiver to Tennessee.
  • Call for nominations for a consumer representative on the Medicaid and CHIP Payment and Access Commission (MACPAC), due January 26.

Read about these topics and more, and check out resources and webinars, in this issue of the Update.
Special Announcements
Renewal of Determination That a Public Health Emergency Exists
On January 7, Secretary of Health and Human Services Alex Azar renewed, effective January 21, 2021, his earlier determination that a public health emergency (PHE) exists and has existed since January 27, 2020, nationwide. This new determination will expire in 90 days, on April 20. 

The continuation of the PHE extends the 6.2 percentage point increase in the federal Medicaid matching rate (FMAP); the 4.34 percentage point increase in the CHIP federal matching rate; the continuous Medicaid coverage (maintenance-of-effort) requirement; and temporary administrative authorities, including “Appendix K,” that give states flexibility in telehealth benefits and other Medicaid and Medicare features. See HHS expands COVID-19 public health emergency until April, preserving key telehealth flexibilities (Fierce Healthcare, 01/08/21).

RAISE Family Caregiving Advisory Council Recommendations and Upcoming Meeting
Pursuant to the 2018 RAISE Family Caregivers Act, the RAISE Family Caregiving Advisory Council (FCAC) is developing a national family caregiving strategy.  At its November 2020 meeting, the FCAC adopted 26 recommendations aimed at establishing a national approach to addressing the needs of family caregivers of all ages and circumstance. The meeting summary, presentation, and closed-captioned recording are available on the RAISE FCAC webpage.

Next meeting. The next RAISE FCAC (virtual) meeting will take place on Tuesday, January 19, at 12:30-4:30 ET, and the Council will be discussing its draft Report to Congress in the winter and spring of 2021. The meeting is open to the public and registration is not required to attend via webinar, which will go live 15 minutes before the start time. Agenda


Related news: In October 2020, the Advisory Council to Support Grandparents Raising Grandchildren (SGRG) finalized 22 recommendations to advance change and improve supports to Kinship Families and Grandfamilies.
The Election & Transition
Biden Selects Health Officials
The president-elect has selected the following individuals for health-related positions in his administration (see Biden unveils health team with Becerra, Murthy, Walensky in top roles, The Hill, 12/07/20):

Secretary of Health and Human Services (HHS): California Attorney-General (AG), and former House Member, Xavier Becerra, who is known for being the leader of the group of Democratic attorneys-general who are defending the Affordable Care Act (ACA) in a lawsuit challenging the law’s constitutionality. There is some disagreement among observers about whether the HHS Secretary should have more substantive health-policy experience than Becerra possesses. See In Becerra, an HHS Nominee With Political Skill But No Front-Line Health Experience (Kaiser Health News, 12/08/20).  

Director of the Centers for Disease Control and Prevention (CDC): Rochelle Walensky, MD, who heads the infectious-diseases department at Massachusetts General Hospital and is a professor of medicine at Harvard Medical School. She has conducted research on HIV and AIDS, with an emphasis on equity and access to treatment. See Biden’s choice to run CDC is a respected specialist who is unafraid to speak her mind (Washington Post, 12/08/20).

Surgeon-General: Vivek Murthy, MD, who served in that position under President Obama. He will also serve as one of three leaders of a new coronavirus task force. See President-elect Biden announces coronavirus task force made up of physicians and health experts (Washington Post, 11/09/20).
 
Additional Steps in Selection of President
The Congressional Research Service (CRS), an arm of Congress, recently updated The Electoral College: A 2020 Presidential Election Timeline (Congressional Research Service, 10/22/20), which describes the steps taken between the election and inauguration to formally select the next president and vice-president. 

The most important dates and actions:  
  • Dec. 8, 2020 – If by this date (six days before electors vote), a state has settled any controversies over its electors pursuant to the state’s procedures, then the electoral votes cast by those electors will be considered conclusive when the votes are counted in Congress on January 6. This year, every state but Wisconsin has met this “safe harbor” deadline.

  • Dec. 14, 2020 State electors will meet in their respective states and D.C. to cast their votes for president and vice-president. 

  • Jan. 6, 2021 – The two houses of Congress will assemble in a joint session to count the electoral votes submitted by the states, with the vice-president presiding. If one ticket attains a majority of 270 or more electoral votes, the vice-president will declare the new president and vice-president. The process can be interrupted if a Senator and Representative together submit a written objection to any state’s electors. (But see “safe harbor” explanation, above.)

  • Jan. 20, 2021, at noon EST– The new President takes office and will be sworn in immediately after the Vice-President takes her (!) oath of office.
Congress
Coronavirus-Relief and other Legislation
Just before Christmas, Congress passed legislation, the Consolidated Appropriations Act, 2021 (CAA) that combines appropriations for the remainder of FY 2021, COVID-relief provisions, and extensions of some public health programs and Medicaid programs (see below). The president signed the bill into law (Public Law 116-260) on December 27. For links to one-page and detailed summaries of these provisions, see this press release from the House Appropriations Committee, 12/21/20). For a summary of the law’s health provisions, see this press release from the House Energy & Commerce Committee (12/21/20).

Among the CAA’s Medicaid provisions are a requirement that states “ensure” Medicaid coverage of non-emergency medical transportation (NEMT) services (effective upon enactment); the extension, through September 30, 2023, of several Medicaid provisions including the “Money Follows the Person” program; and new documentation requirements for insurers that should give them a greater incentive to comply with parity requirements for behavioral health.  For more information on the Medicaid and CHIP impact of the new law, see The End-of-Year COVID Relief Package: Medicaid and CHIP Highlights (Georgetown Center for Children and Families blog, 01/06/21). In addition, the legislation extended tax credits available for businesses to cover paid leave, but it eliminated rules about when businesses must provide leave and did not extend the tax credits to cover all caregivers.

As a last-minute surprise, the “No Surprises Act” was included in the legislation. This measure will protect patients from “surprise medical bills” arising when they unknowingly receive services from an out-of-network provide, such as, when an anesthesiologist bills separately from the hospital when surgery is performed, or a hospital’s emergency-room physicians are independent contractors. See Surprise Billing Protections: Help Finally Arrives for Millions of Americans (Georgetown Center on Health Insurance Reforms, 01/06/21); Unpacking the No Surprises Act: An Opportunity to Protect Millions (Georgetown Center on Health Insurance Reforms, 01/07/21)

A webinar (slides; one-hour video) presented by State Health & Value Strategies provides information about the surprise-billing provisions of the law and multiple other provisions.

Notably, the CAA does not include several provisions sought by advocates, including 12-month postpartum Medicaid eligibility; dedicated funding for Medicaid home and community-based services (HCBS); paid leave and sick days for all caregivers; and economic impact payments for all people with disabilities. The bill does include a one-time $600 payment per adult and child under the age of 17, but does not include any payment for dependents who are over the age of 17.
Medicaid & CHIP
As commonly occurs at the end of an administration’s term, the Department of Health and Human Services (HHS) has issued a number of last-minute rules (a.k.a. “midnight rules), guidance documents, and waivers. Here are some of potential interest to CYSHCN and their families:

The Families First Coronavirus Response Act (FFCRA) provides a 6.2 percentage-point increase in federal Medicaid funding if a state complies with certain conditions, one of which is a prohibition on disenrolling any beneficiaries during the public health emergency (PHE) unless they move out of state or request disenrollment. After the PHE, states will need to determine who remains eligible under the pre-pandemic rules. New federal guidance gives states broad options for returning to normal operations within a constrained timeframe. For explanations of the 56-page Guidance – a “State Health Officials Letter” – see:

On January 8, HHS issued a final rule, the Securing Updated and Necessary Statutory Evaluations Timely (“SUNSET”) rule. The rule requires the Department to assess most of its regulations every ten years to determine whether the regulation is still needed and effective. Rules that are not reviewed in a timely manner will automatically expire. While the proposed rule would have required a review of existing regulations over 10 years old within only two years, the final rule provides 10 years for these initial reviews. For an explanation of the similar proposed rule, see What the Proposed “SUNSET” Regulation Means for Medicaid and CHIP

In December, HHS finalized the so-called Good Guidance Rule, which allows the department to easily rescind sub-regulatory guidance. The rule went into effect on January 6, 2021, meaning that existing guidance documents not posted to the repository by then will be considered rescinded. The National Health Law Program is working with other groups to identify which existing guidance documents have been posted in the repository to date. See A Parting Gift for the Incoming Administration: “Good Guidance Practices” (Georgetown Center for Children and Families blog, 01/06/21).

On January 6, the Centers for Medicare & Medicaid Services (CMS) posted new COVID-19 Frequently Asked Questions (FAQs) (30 pp) to Medicaid.gov, to aid state Medicaid and Children’s Health Insurance Program (CHIP) agencies in their response to the COVID-19 pandemic. These new FAQs are now included in the previously released COVID-19 FAQ document (161 pp).
 
On January 8, the Centers for Medicare and Medicaid Services (CMS) granted to Tennessee, for ten years, a Medicaid “block grant” waiver. According to CMS, under this waiver there will be a “fixed budget target, more flexibility in how that funding can be used to improve services … and the opportunity to earn federal savings that can be reinvested in programs that improve the health of vulnerable populations in the state, all while preserving existing Medicaid coverage.” Health care advocates have long opposed Medicaid block grants because a capped federal contribution will not rise when Medicaid costs increase (e.g., when the state has an economic downtown or epidemic), which will most likely lead to program cuts. In response to the announcement, a group of 21 patient and consumer organizations released a press release expressing opposition to the waiver.

Withdrawal of Proposed Medicaid Fiscal Accountability Rule
On January 7, CMS Administrator Seema Verma announced via Twitter that she was taking action to withdraw the proposed Medicaid Fiscal Accountability Rule (MFAR). Many Medicaid advocates opposed the rule because it would have made it more difficult for states to raise their share of Medicaid funding.

WORTH REPEATING: Medicaid MOE Interim Final Rule
As explained in the Oct. 30 Washington Update, the administration issued an interim final rule with comment period (fact sheet) on Oct. 28 that, among other things, weakens the “maintenance of effort” (MOE) conditions states must meet to receive enhanced Medicaid funding during the pandemic. States now can get the enhanced federal funding even if they reduce benefits to a limited extent. Of note: EPSDT services no longer must be maintained during the pandemic for enrollees who would otherwise “age out” at 21. New resource: Medicaid Maintenance of Eligibility (MOE) Requirements: Issues to Watch (Kaiser Family Foundation, 12/17/20) - includes a table comparing the old and new policies on the MOE.

Some Other New Rules
Jan 07, 2021 Press Release

Dec 21, 2020 Fact Sheet

Dec 10, 2020 Press Release


Medicaid Resources

The Georgetown University Center for Children and Families (CCF) collaborated with the American Academy of Pediatrics (AAP) to produce a Medicaid Managed Care COVID-19 Advocacy Action Guide. The guide explains how practitioners and child health advocates can work with MCOs and state policymakers to increase financial support for pediatric and primary care practices serving children and families enrolled in Medicaid. The guide supplements “Medicaid Managed Care Payment Policies to Support Pediatric Providers” a webinar presented on December 7, 2020 by Manatt Health, AAP, Family Voices, and Georgetown University CCF.

New Year, New Medicaid Outreach Project (National Disability Navigator Resource Collaborative, 1/7/21)
The American Association on Health and Disability (AAHD), in partnership with Community Catalyst and funded by the Robert Wood Johnson Foundation, has announced a new project aimed at conducting outreach to raise awareness about the possible availability of Medicaid to individuals without health insurance.

WORTH REPEATING: Medicaid and CHIP Vaccination Coverage. A new vaccine-coverage toolkit for states and territories is focused primarily on how vaccine administration will be covered, because CMS expects that the initial supply of COVID-19 vaccines will be federally purchased. See Updates to the Coverage and Reimbursement of COVID-19 Vaccines, Vaccine Administration and Cost Sharing under Medicaid, the Children’s Health Insurance Program, and Basic Health Program Toolkit (CMS, 11/23/20).
Vaccines
News

New COVID-19 Variants (CDC, 01/09/21) 


COVID and Vaccine Resources
Some of the many items on the COVID-19 resource page of the Administration for Community Living (ACL) are below: 

States and territories are now distributing the vaccines. You can find information on vaccine distribution in your state in the "Follow your state's guidance" section of our COVID-19 page.

As millions of Americans begin to receive one of the FDA-approved COVID-19 vaccines, the ACL has created a new "Vaccination Information" section on its COVID-19 page with up-to-date resources, including:

Several ACL grantees have developed plain language resources to help people with intellectual and developmental disabilities learn more about the COVID-19 vaccine, including a plain language booklet developed by the Self-Advocacy Resource and Technical Assistance Resource Center and a two-page "social story" developed by the Center for Dignity in Health Care for People with Disabilities at the University of Cincinnati UCEDD.

A COVID-19 resource for people living with paralysis, which has been updated by the Paralysis Resource Center, an ACL grantee, to include information on vaccines.
Affordable Care Act/Private Insurance
News
The “Good Guidance” and “SUNSET” rules mentioned above will also affect administration of the ACA.
 
Surprise billing. As explained in the "Congress" section above, a recently enacted law includes provisions to protect patients from "surprise medical billing." For more information, see Surprise Billing Protections: Help Finally Arrives for Millions of Americans (Georgetown Center on Health Insurance Reforms, 01/06/21); Unpacking the No Surprises Act: An Opportunity to Protect Millions (Georgetown Center on Health Insurance Reforms, 01/07/21).
 
Resources
Navigator Resource Guide (Georgetown Center on Health Insurance Reforms) 
Other COVID Related News

HHS Launches Centralized Website for COVID-19 Clinical Trials

The portal is a one-stop resource to help members of the public and doctors find information about different stages of COVID-19 illness, NIH-supported COVID-19 prevention and treatment clinical trials, and locations to donate plasma.

The website provides clear and easy-to-understand information for:

Supporting Children and Youth with Special Healthcare Needs During COVID-19
The recording and slides from the webinar Supporting Children and Youth with Special Healthcare Needs During COVID-19 are available. Sponsored by Manatt Health, Family Voices, the American Academy of Pediatrics, and Georgetown Center for Children and Families.

TRICARE and Military Health System
YOUR INPUT SOUGHT
The U.S. Government Accountability Office recently posted its call for applications for seats on the Medicaid and CHIP Payment and Access Commission (MACPAC). The Commission membership must include individuals who have had direct experience as enrollees or parents or caregivers of enrollees in Medicaid or CHIP. Leanna George, a parent of children covered by Medicaid and CHIP, has served two terms on MACPAC, and per the usual practice, will not be reappointed. Thus, GAO is particularly looking for a consumer representative for a three-year term starting in May 2021. For more information, see the Federal Register Notice and the  statutory authority regarding MACPAC membership.

Family Voices Survey on Telehealth
As health care providers ramp up the use of telemedicine, Family Voices is interested in improving families’ access to and use of telehealth. We are asking families to complete a survey describing their access to telehealth, and their confidence in and concerns about virtual services. Take the anonymous survey in English or Español.
UPCOMING WEBINARS AND CALLS
Friday, Jan. 15, 2:00 ET
Center for Connected Health Policy, National Telehealth Policy Resource Center

NEW Meeting of the RAISE Family Caregiving Advisory Council
Tuesday, Jan. 19, 12:30 to 4:30 ET
The webinar link will be live for access at 12:15 pm ET, on the day of the meeting. No registration is required to participate.
·      Agenda 
·      Webinar Information

Wednesday, Jan. 20, 1:00-2:30 ET
The New York State Caregiving and Respite Coalition
 
Wednesday, Jan. 20, 2:00-3:00 ET
Center for Inclusive Design and Innovation

Wednesday, Jan. 27, 2:00-3:00 ET
Family and Youth Leadership Committee, Association of Maternal and Child Health Programs 
NOTE: The event is for families ONLY as a safe space for them to share their stories, experiences, challenges, and needs. If you are a family member and interested in participating, please complete the brief registration here. The agenda and log in information will be sent to you prior to the webinar. Feel free to share this with other families in your network. If you have any questions or concerns, please contact: [email protected]  

Wednesday, Jan. 27, 3:00-4:00 ET
Family Voices
Family Voices will share details about The Fab 4 for a Family-Centered Telemedicine Appointment curriculum, which includes prerecorded webinars, customizable PowerPoints with speaker notes, and more supplemental materials to help achieve a family-centered telehealth experience.
 
Wednesday, Jan. 27, 7:00 pm ET
HHS Office of Minority Health
 
Wednesday, Feb. 3, 3:00-4:30 ET
SAMHSA SOAR TA Center
SOAR = Supplemental Security Income (SSI) program Outreach, Access, and Recovery (SOAR), a program designed to increase access to SSI/SSDI for eligible adults and children who are experiencing or at risk of homelessness
OF POSSIBLE INTEREST
A long-time family leader, Juno Duenas, has retired from her position as executive director of Support for Families of Children with Disabilities, the California Family-to-Family Health Information Center (F2F) and the Family Voices Affiliate Organization (FVAO) in California. In an interview with the Lucile Packard Foundation for Children, the mother of four reflects on her decades of activism and what lies ahead for her.

Washing your hands to prevent coronavirus is great—but you also have to clean your phone (“Changing America,” from The Hill, 03/10/20) (Editor: Personally, I use alcohol on a tissue.)

WORTH REPEATING: Pediatric Annals: Special Issue on Children with Medical Complexity (Nov. 2020; click on “Nov.” from the drop-down menu).
This special issue includes a guest editorial, Children with Medical Complexity, and articles on care coordination, partnering with families, and other topics. There is a cost to read full journal articles, but abstracts can be viewed without cost.

New Medicaid financing approach gives Tennessee unprecedented flexibility supporting innovative, high-quality, fiscally sustainable, and broadly accessible care.
The Centers for Medicare & Medicaid Services (CMS) approved an innovative demonstration offering unprecedented flexibility to Tennessee’s Medicaid program with a new “aggregate cap” approach to Medicaid financing provided to the state under this demonstration. In Medicaid’s current financing framework, the volume – rather than value – of care patients receive drives spending. This can lead to greater spending that limits the resources available for states striving to control costs while improving the value of care. The new financing approach aims to shift this paradigm by aligning incentives across the state and federal government. The section 1115 demonstration, known as “TennCare III,” includes an agreement with Tennessee on a fixed budget target, more flexibility in how that funding can be used to improve services under the Medicaid program, and the opportunity to earn federal savings that can be reinvested in programs that improve the health of vulnerable populations in the state, all while preserving existing Medicaid coverage.
 
“The TennCare III demonstration builds on all the good ideas that have been out there around a new financing model for Medicaid, but addresses many of the most prominent concerns,” noted CMS Administrator Seema Verma. “This groundbreaking waiver puts guardrails in place to ensure appropriate oversight and protections for beneficiaries, while also creating incentives for states to manage costs while holding them accountable for improving access, quality and health outcomes. It’s no exaggeration to say that this carefully crafted demonstration could be a national model moving forward.”
 
The TennCare III demonstration leverages many of the flexibilities outlined in the HAO guidance CMS released in 2020. The HAO gives states a broad suite of flexibilities along with certain performance and spending targets, with a focus on fixing administrative processes to allow the state to focus on improving the health of Medicaid populations.

Under the approved demonstration, CMS will work with Tennessee to evaluate well-established, historical enrollment and Medicaid cost data to create a financial structure that establishes a fixed spending target provided under the demonstration, which will increase at a reasonable growth rate over time. The amount is not unlimited, but the plan does include a “safety valve” to help increase funding due to unexpected increases in enrollment and ensure that the state is incentivized to control cost growth through efficient administration and reducing unnecessary costs rather than through reduced enrollment. The safety valve will maintain Tennessee’s commitment to enroll all eligible Tennesseans with no reduction in today’s benefits for beneficiaries.
 
For example, the state has committed to maintaining coverage for eligible beneficiaries or state plan-covered services in place today. Additionally, any benefit changes implemented under the program must be additive in nature, meaning the state cannot reduce its current minimum approved benefits package. Further, beneficiaries have access to all appeals and fair hearing rights, and the state committed to rigorous monitoring and evaluation of both implementation and beneficiary outcomes. 
 
In exchange for taking on this financing approach, the state will receive a range of operating flexibilities from the federal government, as well as up to 55% of the savings generated on an annual basis when spending falls below the aggregate cap and the state meets quality targets. These savings can be spent on vital state health programs that include addressing the social determinants of health for vulnerable populations (the technical term for factors including, but not limited to, access to nutritious food, affordable and accessible housing, convenient and efficient transportation, safe neighborhoods, strong social connections, quality education, and opportunities for meaningful employment). Such an approach will enable the state to advance Medicaid objectives by continuing to improve health outcomes and increase the efficiency and quality of care that Medicaid beneficiaries and similar populations receive while maintaining a neutral impact on the federal budget.
 
“We applaud Governor Lee in his historic efforts to strengthen and sustain the Medicaid program,” CMS Administrator Verma noted.
 
CMS is approving this demonstration for a period of 10 years to reduce administrative burden and allow the state sufficient time to evaluate its innovative approach. This approval, which includes robust monitoring and evaluation, empowers the state to better manage costs and target resources when delivering high-quality patient care for more than 1.4 million Tennesseans, many of whom continue to reel from the effects of the coronavirus disease 2019 (COVID-19) pandemic.
 
An expansive list of flexibilities from the federal government will help Tennessee better respond to local needs – all while incentivizing cost savings that federal and state governments can share.
 
Among those flexibilities, CMS has approved several new approaches to help Tennessee better serve its Medicaid population and lower prescription drug costs. With the exception of drugs for individuals eligible for Early and Periodic Screening, Diagnostic and Treatment benefits, the state will have the authority to implement a “commercial-style” closed drug formulary, while continuing to receive statutory Medicaid drug rebates for covered drugs. Specifically, the state will have authority not to cover certain medications when there is at least one drug available per therapeutic class under essential health benefit rules (with the exception of certain protected drug classes), and to exclude certain new drugs from its formulary, with an exceptions process for specialty drugs. With this approval, Tennessee will have greater ability to negotiate other supplemental rebates directly with drug manufacturers.
 
Additionally, this approval includes:
  • Flexibilities to increase benefits and coverage without seeking prior approval from CMS within the parameters approved.
  • Authority to address Medicaid fraud more aggressively. For example, if the state has determined that a beneficiary has committed fraud in the Medicaid program, the state has the ability to suspend their benefits for up to twelve months after a full investigation.
  •  Flexibilities to change existing benefits and services without reducing the amount, duration, or scope of covered services below levels in place at present.
  •  Controls to better regulate uncompensated care costs.

At the federal level, the demonstration continues to meet “budget neutrality,” meaning anticipated federal spending during the program’s 10-year lifespan will be no greater with the demonstration than it would have been without it. State and federal partners can equitably share the risks and rewards that come with fueling innovation while also working to reduce costs. Expansive federal monitoring and evaluation will help CMS ensure the TennCare III demonstration moves in lock-step with Medicaid’s commitment to beneficiaries, all while potentially driving future approaches to improve their care.
 
TennCare itself began in 1994 as a 1115 demonstration project that assisted in promoting the objectives of the Medicaid program. Like TennCare in its infancy and this new demonstration building on its innovative legacy, section 1115 demonstrations present an opportunity for states to institute innovative reforms that meet the needs of their population, often going beyond routine medical care and focusing on evidence-based interventions to drive better health outcomes and improve quality of life. They also represent many of the most powerful tools employed by the Trump Administration to sustain Medicaid for future generations by moving toward a system that pays for what Americans need: Better quality, at a lower cost.
 
TennCare’s new demonstration program is authorized statewide beginning January 8, 2021 and lasting through December 31, 2030.
 
 
CMS Administrator Verma’s press call remarks on TennCare III

Jan 08, 2021 Press Release

Jan 07, 2021 Press Release

Dec 22, 2020 Press Release

Dec 21, 2020 Fact Sheet

Dec 21, 2020 Press Release

Dec 21, 2020 Press Release

Dec 10, 2020 Fact Sheet

Dec 10, 2020 Press Release

Other from January 2021:

Other from December 2020:
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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.