Category Archives: National News

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.

Medicaid is Vital for Children and Youth with Special Health Care Needs

Medicaid is an “entitlement” program, which means that anyone who meets eligibility rules has a right to enroll in Medicaid coverage. It also means that states have guaranteed federal financial support for part of the cost of their Medicaid programs.

Medicaid funding is a shared responsibility between the federal government and the state government.

To receive federal funding, states must cover certain “mandatory” populations: low-income families and individuals, including children, uninsured children parents, pregnant women, seniors, and people with disabilities. States may also offer coverage for “optional” populations including “carve-out” waivers; such as in Colorado the CES and SLS Waivers. These are Medicaid waivers that provide home and community based services for eligible individuals who are screened under the criteria necessary. They allow beneficiaries to receive long-term health care benefits at home or in community settings outside of institutional settings

 

If Medicaid becomes a “block grant” that means that states would receive a set funding level. This could have devastating effects on providing health care to those in need and includes not adequately paying providers.

If Medicaid becomes a block grant, it would be difficult for the state to provide adequate coverage for our most vulnerable populations, whether they be income eligible or eligible through a waiver. At this moment, the waivered services could go away. Meaning, unless you are income eligible, you could potentially lose the very services that assist you and your family.

What could be lost if Medicaid were to become a “block grant”?

  • Some services in Early Intervention
  • EPSDT (Early Periodic Screening, Diagnostic and Treatment) the safety net for children under Medicaid, if medically necessary must be covered by Medicaid.
  • Put newborns disproportionality in harm
  • Loose or reduced coverage under Home and Community based Waivers
  • Respite Care
  • Speech, Occupational Physical Therapy (including those accessing special education related services
  • Nursing care
  • Prescriptions
  • Personal Care and In-home Supports
  • Provider rates may be cut even more
  • Institutionalization would likely increase
  • Acute care services, such as hospitalization
  • Many would lose all access to health care
  • Caps may happen on enrollment
  • Increasing waitlists
  • Quality of Life
  • Some Nursing Home Care
  • Eliminate current spousal impoverishment
  • Could eliminate mental health services
  • Increase Welfare System
  • Other Therapeutic Care
  • X-rays and Lab tests loss
  • Durable Medical Equipment
  • Eliminate Medicaid Expansion

For many; Medicaid is a “Lifeline”

  • About 4 % of Children and Youth with Special Health Care Needs – 6.3 million – rely on Medicaid or CHIP. (For about 8 percent of these children, Medicaid supplements private insurance, covering services and items not covered by their private plan, such as eyeglasses, hearing aids, and assistive devices.)
  • Medicaid allows Children and Youth with Special Health Care Needs to get the medical treatment, medications, equipment, therapies, and other services and supplies they need to stay as healthy as possible, thus avoiding excess and costly hospitalizations or ER visits.
  • Medicaid covers early and periodic screening, and diagnosis and treatment of developmental and health problems early in a child’s life, helping to avoid more expensive treatment or special education later on.
  • Medicaid protects families of Children and Youth with Special Health Care Needs from extraordinary medical debt or bankruptcy.
  • Medicaid allows some parents to work and pay taxes by providing home health care for seriously ill children who need it.

If Medicaid is subject to per capita caps or block grants, states will have less money in the long run, forcing them to significantly reduce Medicaid coverage and/or services. Moreover, they will not be able to respond to outbreaks (like microcephaly from the Zika virus), or to cover new diagnostic methods, treatments or medications; with block grants states also will be unable to respond to economic downturns.

Other considerations that would have an effect if a Medicaid Block Grant would take place is states would no longer have these options for the long term: Creating the Community First Choice Option– allows States to provide home and community-based attendant services and supports to eligible Medicaid enrollees under their State Plan.

Extending the Money Follows the Person Rebalancing Demonstration– allows Medicaid funding (services) to follow a person from an institutional setting to housing in the community. Even though these services are provided by different entities, the Medicaid funding pays for the costs of services in the community.

Creating the Balancing Incentives Program provided financial incentives to States to increase access to non-institutional long-term services and supports (LTSS) in keeping with the integration mandate of the Americans with Disabilities Act (ADA), as required by the Olmstead decision.

Current talks on Medicaid reform if it is moved to a block grant, could lose $800 billion over ten years, seriously affecting children with disabilities without having any coverage.

Affordable Care Act (ACA) – Many provisions of the ACA are being looked at to be repealed and replaced. These changes may not only affect the ACA and Marketplace policies but also could impact employer based policies.

The ACA’s consumer protections and benefits are of particular importance to the 53.3 percent of Children and Youth with Special Health Care Needs (7.7 million) with private insurance. 

ACA benefits that are being reviewed to possibly be eliminated include:

  • Protections for children with pre-existing conditions, without which they would never be able to get insurance, would be charged higher premiums, and/or would be denied coverage for their pre-existing conditions.
  • Elimination of annual and lifetime benefit caps, and caps on out-of-pocket expenditures, ensuring that children can get the care they need without imposing unsupportable costs on their families.
  • Allowing young adults to stay on their parents’ insurance policies until age 26, and providing Medicaid to former foster children until age 26.
  • Critical health benefits, including “habilitation” services needed to acquire and maintain skills (g., physical therapy for children with cerebral palsy so they can learn to walk, or speech therapy for children with hearing impairments). The ACA also ensures that children get critical oral and vision care and behavioral health services.
  • No-cost preventive care, including check-ups and screenings to detect and treat health or developmental problems early in a child’s life, helping to avoid more expensive treatment or special education later on.
  • Medicaid expansion to all individuals with incomes up to 138% of the federal poverty level, which helps young adults and others with chronic illnesses or disabilities who do not have access to employer-based insurance.

 The ACA provides non-discrimination provisions for all insurance policies. If repealed, the loss would be drastic and could include:

  • Bans the exclusion of people from health insurance coverage based on pre-existing conditions
  • Prevents insurers from charging people with disabilities and health conditions significantly more for health insurance coverage
  • Prevents insurers from charging people with disabilities and health conditions significantly more for health insurance coverage

Replacement being considered would:

*Gut the protection against health insurers hiking premiums for people with pre-existing conditions by repealing the “community rating” provision.

*Allow insurance companies to charge more for those with pre-existing conditions, or force enrollees to enroll in High Risk pools. These High Risk Pools are often unaffordable for families to pay for.

*Eliminates the prohibition on health insurance companies putting annual or lifetime limits on how much they pay for care.

*Keeps the provisions that raise premiums for older individuals, lower tax credits, eliminate cost-sharing reductions.

Currently, the ACA provides an essential benefit package, that unless the plan you are on was grandfathered in, most insurance companies have adopted these benefits. These are:

Outpatient services

Emergency services

Hospitalization

Maternity and newborn care

Mental health and substance use disorder services, including behavioral health treatment

Prescription drugs

Rehabilitative and habilitative services and devices, laboratory services

Improves accessibility of medical diagnostic equipment

Preventive and wellness services and chronic disease management. Cancer screenings such as mammograms and colonoscopies, Blood pressure and cholesterol screenings, Tobacco cessation counseling and interventions, vaccinations

Replacement being considered would allow states to waive or remove the essential health benefit requirements so insurers wouldn’t have to cover hospitals, doctors, prescriptions, lab tests, mental health, maternity and newborn care, and care for substance use disorders.

These are dangerous considerations that will affect all of our families of children and youth with special health care needs as well as adults with disabilities.

Family Voices Colorado is gathering stories from families to provide as education to our members of Congress. If you would like to write a short story on how these changes would affect your family, please email with a picture to tom@familyvoicesco.org

By sending your story, you are granting permission to submit your story to members of Congress.