Category Archives: Family Voices News

Family Voices Awarded Federal Grant

The Health Resources and Services Administration, Maternal Child Health Bureau has awarded Family Voices Colorado grant funding through May 31, 2022 to continue operating the Colorado Family-to-Family Health Information Center (F2F HIC). The purpose of this program is to provide information, education, technical assistance, and peer support to families of children and youth with special health care needs (CYSHCN) and the professionals who serve them.

In order to help address the challenges for families in accessing care, the F2F HICs Program was developed to fill the gaps in information and support for families of CYSHCN and the providers who care for them. Originally funded through a Special Projects of Regional and National Significance (SPRANS) pilot program in 2005, and currently authorized and funded under Section 501(c)(1)(a) of the Social Security Act, the network of F2F HICs is a cornerstone of ongoing family engagement efforts. These centers are staffed by family members who have first-hand experience using health care services and programs for CYSHCN. This experience is used to provide support, patient-centered information, resources, and training to families and professionals around health issues faced by CYSHCN. Since the program’s inception in 2005, the network has grown from 29 to a total of 51 funded F2F HICs (one in each of the 50 states and the District of Columbia), and the centers have more than quadrupled the number of families served. Data collected from June 1, 2015 to May 31, 2016 revealed that F2F HICs provided outreach and information to 995,246 families and 353,687 professionals and served a total of 169,241 families and 73,768 health professionals through individualized assistance and/or training from an F2F HIC.

The F2F HICs program fills a critical need for reliable information and support for all families with CYSHCN. Additionally, they serve as an important complement to, and resource for, other HRSA-funded programs that support direct health care service delivery or system infrastructure, such as Title V, and other programs that serve families with condition-specific health care needs.

Washington DC Update (Family Voices National)


President’s Budget Proposal – In General

On February 12, the president released his FY 2019 budget proposal, which would make significant changes and cuts to many programs of importance to children and youth with special health care needs (CYSHCN) and their families. See the “HHS Budget in Brief.”  Among other changes, the president proposes to convert the Medicaid program to block grants or per capita caps. (See HHS Budget in Brief, pp. 80-84 for Medicaid proposals.) The president also proposes to repeal and replace the Affordable Care Act with a Graham-Cassidy like bill. (See pp. 53-57.) In addition, the administration proposes certain changes to the Supplemental Security Income (SSI) program, including a reduction in SSI payments to families with more than one person receiving SSI benefits (including multiple children). (See Pres. Budget FY 2019 – Major Savings and Reforms, pp. 113-115, and the Consortium for Citizens with Disabilities fact sheet on the administration’s proposals regarding Supplemental Security Income and other changes to the Social Security program.)

For changes in program policy – such as most of those proposed for the ACA, Medicaid, CHIP, and SSI, Congress would have to amend current law. In years when Congress passes a budget resolution – and includes “reconciliation instructions” – they can use a reconciliation bill to make such changes, meaning a simple majority, rather than 60 votes, is needed to approve the legislation in the Senate. It does not look likely that Congress will pass a budget resolution this year, however. See House Budget Being Drafted Despite Nearly Insurmountable Obstacles (Roll Call, 2/16/18).

For more information about the president’s budget in general, as well as the budget process, see Trump’s 2019 Budget: What He Cuts, How Much He Cuts, and Why It Matters (Vox, 2/12/18).

President’s Budget Proposal – Addendum

On the same day the budget was released, White House budget director Mick Mulvaney sent Congress a budget addendum via a letter to House Speaker Paul Ryan. Among other things, the addendum proposes a shift of $5.75 billion from “mandatory” funding to “discretionary” funding for 15 HHS programs, including Community Health Centers, the Prevention and Public Health Fund, the Maternal, Infant and Early Childhood Home Visiting Program, several aging programs, and Family-to-Family Health Information Center (F2F) program. (See letter, attachment pp. 7-8.)

Individual discretionary programs (e.g., the Maternal and Child Health Block Grant) must be funded each year through appropriations legislation, and overall spending for discretionary programs is subject to specified caps (which were raised for two years in the recent budget law). In contrast, “mandatory” programs – like the F2F program – are automatically funded for as long as they are authorized, without going through the annual appropriations process.

If the president’s proposal to shift some programs from mandatory to discretionary funding were adopted by Congress, the shifted programs would have to compete with all other discretionary programs for the limited pot of discretionary money available to appropriators.

Many of the programs that the administration proposes to shift from mandatory to discretionary, including the F2F program, were reauthorized/funded – with “mandatory” dollars – through FY 2019 when the Bipartisan Budget Act was enacted on February 9. Therefore, it does not seem likely that Congress would want to use some of its limited discretionary funds for mandatory programs that have already been funded, when those funds could be spent for the discretionary programs that still need to be funded for FY 2018 and will need to be funded next year.



The ADA Education and Reform Act of 2017

On February 15, the House approved the “ADA Education and Reform Act of 2017”

(H.R. 620) by a vote of 225-192. Although the bill is bipartisan, it is opposed by disability advocates because it would weaken the Americans with Disabilities Act (ADA). The bill’s supporters are concerned about frivolous lawsuits against businesses that allege non-compliance with the ADA’s requirements regarding physical accessibility. If the bill were enacted, it would reduce incentives for businesses and other entities to comply with the ADA’s requirements. See the Judiciary Committee’s report on the bill, dissenting views (House Report 115-539 (pp. 17-27); and HR 620- Myths and Truths about the ADA Education and Reform Act (ACLU). At this time there is no companion bill in the Senate, and it will likely be difficult to get the 60 votes that would be needed in the Senate to advance the bill. See House Passes Bill Critics Say Would Undermine Disability Rights (Roll Call, 2/15/18).



On February 1, the Centers for Medicare and Medicaid Services (CMS) approved a Medicaid waiver request from Indiana that would impose work requirements on some Medicaid beneficiaries, among other measures that would likely restrict eligibility. See Indiana’s Waiver Approval Adds More Barriers to Medicaid Coverage (Georgetown Center for Children and Families Blog, 2/2/18). While most of the attention about recent waiver requests has focused on work requirements, there are other aspects of these proposals of concern to patient advocates, including requests to impose lifetime limits on Medicaid eligibility. See Trump’s Historic Medicaid Shift Goes beyond Work Requirements (Stateline, Pew Charitable Trusts, 2/16/18); HHS Chief: No Decision Yet on Lifetime Limits for Medicaid (2/15/18).

Both Members of Congress and patient advocates have expressed strong opposition to work requirements. For resources on work requirements, see Summary of Posts and Resources on Medicaid Work Requirements (National Disability Navigator Resource Center, 2/15/18). To learn about the legal challenges to work requirements, see Will Federal Courts Uphold Trump Administration Medicaid Waiver Approvals? The Case For Skepticism (Health Affairs blog, 2/15/18).

Washington DC Update (2/15/17)

If you want to read the full newsletter or past issues please click here …  Washington DC Update Past Issues.

Greetings from Washington!

In the past week, the Senate has confirmed several Cabinet Secretaries, including the Secretary of Health and Human Services. On the House side, some reports indicate that the Republicans may be getting closer to proposing legislation to repeal the Affordable Care Act, either replacing it in a piecemeal fashion or repealing it on a delayed basis until a replacement plan is developed. On the regulatory front, the administration recently issued a new rule that will require home health agencies to be more responsive to patients and their caretakers, and may soon issue a rule to help insurers participating in ACA Exchanges.  And, if you ever have questions about health policy or terminology, you can turn to the new, online edition of The Essentials of Health Policy: A Sourcebook for Journalists and Policymakers.


Rule on Insurance Stabilization Payments and Essential Benefits?

According to Politico Pulse, a regulation to stabilize insurance companies participating in the ACA exchanges may be coming soon, since it recently was cleared by the Office of Management and Budget, an arm of the White House. The rule is expected to provide some of the measures requested by insurance companies to reduce their risk, including a tightening of special enrollment period qualifications.  According to Politico, some sources expect some modifications to the essential benefit package, too.



Secretary of HHS 

Despite strong Democratic opposition, Rep. Tom Price, MD (R-GA) was confirmed by the Senate last week, along a party-line vote, to be the Secretary of Health and Human Services (HHS).  Hours later he was sworn into office by Vice-President Pence.  Secretary Price has been a long-time opponent of the Affordable Care Act (ACA).  He authored a 2013 bill to repeal and replace the law, which could become a model for any administration proposal on replacement legislation. The Secretary can be followed on Twitter at @SecPriceMD.

CMS Administrator

The president has nominated Seema Verma to head the Centers for Medicare and Medicaid Services (CMS), which oversees Medicare, Medicaid and the ACA. The Senate Finance Committee will hold her confirmation hearing this week. Ms. Verma has consulted with a number of states on how to restructure their Medicaid programs under federal waivers, and developed the Indiana waiver plan under then-Governor Mike Pence. Participants in the Indiana program make contributions to special health savings accounts and can be penalized for failure to make these contributions.

ACA Repeal and Medicaid Restructuring

There are slight indications that the Republicans are moving closer to acting on their plans to “repeal and replace” the Affordable Care Act (ACA or “Obamacare”). House Republicans reportedly are meeting with the nonpartisan Congressional Budget Office (which makes the official estimate of how much a bill will cost) about the details of tax credits, high-risk pool funding, and changes to Medicaid that could be included in a repeal bill. The Hill reports that key House committees are planning to take up (“mark up”) their repeal bills by March 1, and House Speaker Paul Ryan (R-WI) has indicated that he would like the House to pass a bill by the end of March.  The legislation would take the form of a “reconciliation bill,” which would only require 51 votes in the Senate rather than the usual 60 needed to act on legislation in that chamber.

Meanwhile, Republican Senators from states that have taken up the ACA’s Medicaid expansion have begun to meet to figure out their positions on any repeal legislation.  If the Medicaid expansion part of the ACA is repealed, these states will lose many millions of federal dollars. At the same time, if the Medicaid program is restructured into a block grant or per capita cap payment system, states that did not expand Medicaid may lose out when a baseline for the block grants or caps is calculated.

The path toward ACA repeal will not be an easy one.  There have always been many thorny policy issues to be worked out, and now there is also an increasing amount of popular opposition to repeal.  Members of Congress have, in some cases, been overtaken by constituents protesting at town-hall meetings, to the point that some Republicans fear for their safety.

Other Legislation


On February 7, Representative Rosa DeLauro (D-CT) and Senator Kirsten Gillibrand (D-NY) reintroduced the Family And Medical Insurance Leave (FAMILY) Act. The legislation would provide up to 12 weeks of paid leave for a pregnancy, the birth or adoption of a child, to recover from a serious illness, or to care for a seriously ill family member, based on current Family and Medical Leave Act (FMLA) guidelines. Workers on leave would receive up to 66 percent wage-replacement. The cost would be paid for through small employer and employee contributions; the average worker would pay $1.50 per week. Benefits would be portable rather than tied to any one employer. Currently, H.R.1439 has 137 cosponsors and S.786 has 27, all Democrats.


CMS Tools and Information on Mental Health and Substance Use Disorder Parity and Children and Youth with Mental Health or Substance Use Disorders

CMS has published two new technical assistance documents to assist state policy makers with the implementation of mental health and substance use disorder parity requirements for Medicaid and CHIP programs. The Parity Compliance Toolkit provides technical guidance and tools for states to help them understand and perform the parity analysis for each of the requirements of the final parity rules. The Parity Implementation Roadmap provides policymakers a practical overview of how to approach parity implementation and compliance from a planning and operational perspective. The webpage on Behavioral Health provides additional information on mental health parity.

Policy Brief on Medicaid Cuts

The School Superintendents Association (AASA) has released a policy brief – In Cutting Medicaid: A Prescription to Hurt the Neediest Kids – about the potential impact of proposed changes to the Medicaid program on students with disabilities and students from low-income families.

WORTH REPEATING: Medicaid and Children with Special Health Care Needs

This issue brief from the Kaiser Family Foundation (January 31, 2017) describes children with special health care needs (CSHCN) and explains how they can become eligible for Medicaid, and describes the services for CSHCN that are covered by Medicaid and how much Medicaid spends on these services.

WORTH REPEATING: Title V and Medicaid/CHIP Interactive Worksheets

The Catalyst Center has developed two interactive worksheets that can be filled in to provide an overview of your state’s Title V program or Medicaid and Children’s Health Insurance Program (CHIP). Each worksheet includes resources to help users find and insert state-specific information to help demonstrate the importance of Title V, Medicaid and CHIP for children with special health care needs (CSHCN) in their state.


The worksheets were created as companion materials to the Catalyst Center’s Public Insurance Programs and Children with Special Health Care Needs: A Tutorial on the Basics of Medicaid and the Children’s Health Insurance Program (CHIP)


New Source for IDEA Information

The US Department of Education’s IDEA website is down, but the information that was on that site, including resources from the now-non-existent National Dissemination Center for Children with Disabilities (a.k.a. NICHCY) can be found on the website of the National Center for Parent Information and Resources,  That website also includes many other early intervention, special education, and transition resources.

New Rules on Home Health Agencies

Last month, the Centers for Medicare and Medicaid Services (CMS) issued a final rule on the Conditions of Participation (in Medicare and Medicaid) for home health agencies. It is the first major overhaul of these rules in almost 30 years. As explained in an article from Kaiser Health News, the new rules will place many new requirements on home health agencies, some of which are intended to make the agencies more responsive to patients and their caregivers. Home health agencies also will be expected to coordinate all the services that patients receive and ensure that treatment regimens are explained clearly and in a timely fashion. The new rules are set to go into effect in July, but may be delayed as the administration reviews regulations that have been drafted or finalized but not yet implemented.