Category Archives: National News

Resources E-Blast- October/November 2018

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THIS ISSUE:  Many families in the U.S. recently navigated the transition from summer to school year. Families of children with special health care needs and disabilities often have multiple transitions in the pipeline.  This issue of the eBlast shares resources for a variety of types of transition.

 Transition “Starters” for Everyone   

For a place to start, check out this collection of resources on transition planning. Resources are divided by audience: general audience, parents, professionals, and students.

National Resource Center for Supported Decision-Making Resource Library

From the comfort of your own home, find a transition planning tool or a document that explains a transition-related policy or law. This online resource library–and also checkout the Research Library–shares resources, guides, and toolkits to help people with disabilities and older adults exercise their Right to Make Choices.

Health Care Transition Resources for Youth and Families 

This page from our partner, Got Transition, defines health care transition and has a set of frequently asked questions answered by experienced youth, young adults, and parents.

Share Your Supported Decision Making Story

The National Center for Supported Decision Making wants to hear from you!  Share your family experience using supported decision making to assist youth or adults manage their lives and make informed decisions. Use the story collection form or contact Morgan Whitlatch at mwhitlatch@dcqualitytrust.org.

Washington DC Update (Family Voices National)

THE ADMINISTRATION

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.

 

CONGRESS

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).

MEDICAID/CHIP NEWS, INFORMATION, AND RESOURCES

Waivers

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).

Flu Information

Currently all U.S. states (except Hawaii) continue to report widespread geographic flu activity. Some people are more likely to get flu complications that can result in hospitalization and sometimes death. This includes children and adults with neurological and neurodevelopmental disorders, such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability, moderate to severe developmental delay, muscular dystrophy, or spinal cord injury. CDC recommends that everyone, 6 months and older, get influenza vaccination, especially people who are at high risk of developing serious complications:

Antiviral drugs can make flu illness milder and shorten the time you are sick. They can also reduce serious flu complications.  Antiviral drugs are medicines (pills, liquid or an inhaled powder) prescribed by a doctor and are not available over-the-counter. Early antiviral treatment is recommended for all people with high risk conditions, if influenza is suspected. Prompt antiviral treatment for flu, even without confirmatory testing, is critical for people at high risk.

It’s not too late to get in the flu vaccination.  As a reminder, it’s especially important that these individuals get an influenza vaccine each year to help protect them against influenza and related complications because of their high risk status.  Annual influenza vaccination is also especially important for people who come in contact with these individuals who are at increased risk of flu complications.  Flu vaccination is the best protection against influenza. It can reduce the risk of illness, hospitalization and even death as well as reduce the spread of influenza.  Antiviral drugs are a second line of defense against flu.

CDC’s seasonal flu vaccination campaign materials are available to assist partners in communicating about the importance of vaccination, and includes a digital toolkit with web-ready resources and social media.  Our free resources section hosts a variety of materials, including podcasts and PSAs, videos, infographics, and print materials.

 

CDC’s website is also full of information on this flu season, including what you need to know, how flu spreads, and who is at high risk from flu, and flu activity levels in the United States.