Washington DC Update (2/8/17)

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ACA Repeal and Medicaid Restructuring


The Republicans in Congress are still trying to figure out how to move forward with their plans to “repeal and replace” the Affordable Care Act (ACA or “Obamacare”), or even to “repair” it, a term some have adopted recently. There have been a number of hearings on issues and bills related to amending the law, but a comprehensive plan has not yet emerged. In a Sunday interview with Bill O’Reilly, the president said he thought it might take until next year to figure out a way to replace the ACA, but House leaders are still talking about moving legislation – at least to enact a delayed repeal – this spring. Yet, a number of Members of Congress have said they would not support repealing of the ACA without simultaneously enacting a law to replace it. Moreover, the uncertainty of a repeal law with a delayed effective date – to give Congress time to develop an ACA alternative – could drive insurance companies away from participating in the exchanges. Therefore, there have been talks with insurance companies about ways to ensure their stability during the delay period or the transition to a new plan. See the New York Times article “G.O.P. Campaign to Repeal Obamacare Stalls on the Details.” 

As reported in the past, the president and many congressional Republicans have indicated that they will continue policies to protect consumers with pre-existing conditions, but at the same time do away with the requirement that everyone have insurance (the “individual mandate”). These two aims that are generally considered incompatible given the need to have an insurance pool that includes a number of healthy people, some of whom would forego insurance if not required to have it. A proposed solution to this dilemma is to require people to have continuous coverage in order to be protected from pre-existing condition exclusions. In fact, the chairman of the relevant House committee recently unveiled and held a hearing on continuous-coverage legislation and other ideas for replacing the ACA. See the op-ed Repealing Obamacare and Rebuilding Our Health Care System by Chairman Greg Walden (R-OR) and Health Subcommittee Chairman Michael Burgess (R-TX). Rep. Frank Pallone (D-NJ), Ranking Democrat on the committee, among others, assert that a continuous-coverage requirement will not provide adequate protection, however, and that the Walden bill would permit insurers to charge higher premiums for those with pre-existing conditions.

Information for states on the impact of ACA repeal:


Last week, subcommittees of the House Energy and Commerce Committee held two hearings about the Medicaid program. On January 31, the Subcommittee on Oversight and Investigations held a hearing on “Medicaid Oversight: Existing Problems and Ways to Strengthen the Program” (links to testimony and Republican staff background memo). A witness who oversaw Medicaid and CHIP in the Clinton administration (Tim Westmoreland) testified: “Rather than further supporting constructive State and Federal efforts to ensure that every dollar is well spent, these proposals would slash and cap Federal funding not just for the bad actors but for the good guys who are acting on behalf of people who are eligible and in need. Reduced, capped Federal funding does nothing to improve program integrity. But it does put coverage at risk for low-income Americans and shifts the costs for the most expensive services to States, localities, providers, and charities.”

On February 1, the Subcommittee on Health held a hearing on “Strengthening Medicaid and Prioritizing the Most Vulnerable” (links to testimony and Republican staff background memo). For opposing opinions on the impact of the bills discussed at the hearing, see this op-ed from the bills’ sponsors, and this critique from the President and CEO of the Children’s Mental Health Network.

Resources related to Medicaid proposals:

Alternative Approaches to Medicaid Financing: Choice of Design Elements in Alternative Financing Proposals, from MACPAC


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.

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).

Medicaid Waivers Targeting Children With Autism Spectrum Disorder Reduce The Need For Parents To Stop Working

This article from the journal Health Affairs found that Increases in the Medicaid home and community-based services waiver cost limit and enrollment limit significantly reduced the likelihood that a parent had to stop working, although the results varied considerably by household income level.

Current Flexibility in Medicaid: An Overview of Federal Standards and State Options

This issue brief from the Kaiser Family Foundation provides an overview of current federal standards and state options in Medicaid and how states have responded to these options in four key areas: eligibility, benefits, premiums and cost sharing, and provider payments and delivery systems.


Children and young adults with special health care needs are those who require higher-than-average use of the health care system due to a health condition such as diabetes, epilepsy, cerebral palsy, autism, cancer, sickle cell disease, traumatic brain injury, or other illness or disabilities.  The Affordable Care Act (ACA) includes a number of provisions that are extremely important to CYSHCN and their families.  Among the most important of these are:

  • A prohibition on refusing to insure or charging more for coverage of children with pre-existing conditions, or excluding coverage for services related to that condition. Before the ACA, children could be denied insurance, charged more for insurance, or denied coverage for the services they needed most because they had a pre-existing condition such as a congenital heart defect, cerebral palsy or asthma. Without insurance for their children, many families could not afford the expensive medications, medical care, and hospitalizations their children needed, forcing them into medical bankruptcy.
  • Elimination of annual and lifetime benefit caps. Before the ACA, a very sick premature infant might reach on his or her lifetime cap on coverage before even leaving the hospital, sometimes leading to the family’s bankruptcy. Children with chronic conditions who needed expensive medications or frequent therapies might reach their annual cap every year.
  • Habilitation services and devices, other critical health benefits. Before the ACA, many insurance plans did not cover “habilitation” services – therapies needed by many children with developmental disabilities to acquire and maintain skills (e.g, physical therapy for those with cerebral palsy so they can learn to walk, speech therapy for those with hearing impairments).  The ACA also ensures that children get critical oral and vision care and behavioral health services.
  • Allowing young adults to stay on their parents’ insurance policies until age 26, and providing Medicaid to former foster children until age 26. These provisions help many young adults with chronic illnesses or disabilities who do not have access to employer-sponsored insurance but are not eligible for Medicaid, and provide a parallel benefit to former foster children, including those with special health care needs.
  • No-cost preventive care for children based on the “Bright Futures” recommendations of the Maternal and Child Health Bureau and the American Academy of Pediatrics. No-cost check-ups and screenings help to ensure that health or developmental problems are detected and addressed 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. This provision helps young adults and others with chronic illnesses or disabilities who do not have access to employer-sponsored insurance and are not otherwise eligible for Medicaid.


Medicaid is a vital program for children and youth with special health care needs (CYSHCN) – children who have any of a broad range of chronic illnesses and/or disabilities (e.g., cerebral palsy, epilepsy, diabetes, autism).  Approximately 15 million, nearly 20 percent, of all U.S. children have special health care needs.  Over 44 percent of these children rely in whole or part on Medicaid or CHIP to cover the costs of their care.

Over 11 million CYSHCN – 35.9 percent — rely completely on public insurance to get the services they need.  Another 8.2 percent have a combination of private and public insurance.  In those cases, Medicaid helps families pay for out-of-pocket costs, and may serve as “wrap-around” coverage to supply services or devices not covered by their private plans.  For example, some medical equipment and assistive devices (such as hearing aids) may not be covered under traditional insurance plans but are available through Medicaid.

Accordingly, Medicaid can save families from bankruptcy that might otherwise result from high medical bills.  In many cases, it also allows parents to continue working by supplying caretaking services for their children.

In addition, Medicaid helps to prevent or ameliorate disabilities, since children on Medicaid have access to Early and Periodic Screening, Diagnosis and Treatment (EPSDT).  Early screening and diagnosis means that developmental or health problems can be identified early in a child’s life, and necessary treatment can be provided before a condition develops or becomes more severe.  As a result, some children can avoid the need for special education services.

If not for Medicaid —

  • Santina – a teen from Pennsylvania with Rett Syndrome and epilepsy – could lose access to her medication. And, her single mother would probably have to quit her two jobs if Medicaid’s safety net were not there to provide a caretaker for her daughter.
  • The family of Joshua – whose life-saving liver transplant was paid for by Oregon Medicaid — would not have the means to pay for the 22 medications he must take every day.
  • Jason, from Ohio – who has developmental delays that leave him unable to speak, walk, or use his hands in a coordinated fashion – would lose the early intervention, speech, occupational, and physical therapies that will one day allow him to walk, speak and use his hands.

In short, millions of vulnerable children and their families rely on Medicaid to help them obtain and pay for critical medical care and related services.

Please send me your stories about how Medicaid or CHIP has helped your family.

Best Regards,

Tom Rose        tom@familyvoicesco.org


Making Colorado a better place for children and youth with special health care needs