Category Archives: National News

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


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

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

Top 10 Changes to Medicaid Under House Republicans’ ACA Repeal Bill from NHeLP

A big Thank You from NHeLP | National Health Law Program for making it clear what will change if the ACA is repealed.

On March 6, House Republicans introduced the American Health Care Act (AHCA) to repeal the ACA and eliminate the current financing structure of Medicaid. Yet the bill makes many other draconian changes to Medicaid. Overall, the Congressional Budget Office estimates that several major provisions affecting Medicaid would decrease direct spending by $880 billion over the 2017-2026 and result in 14 million individuals losing Medicaid. This fact sheet addresses how AHCA impacts Medicaid.

1. Implements a Per Capita Cap. Since 1965, Medicaid has operated as a federal-state partnership where states receive on average 63% of the costs of Medicaid from the federal government. The federal share is based on actual costs of providing services. AHCA limits the federal contribution, based on a state’s 2016 expenditures inflated at a rate that is projected to be less than the yearly growth of Medicaid health care costs.3 So starting January 1, 2020, funding for state Medicaid programs will shrink over time, resulting in states cutting coverage and services for all beneficiaries.4

2. Repeals Medicaid Expansion. AHCA effectively repeals the Medicaid expansion on January 1, 2020 by eliminating the enhanced federal funding for states to enroll non-pregnant childless adults. It also requires those in the Medicaid expansion population to submit eligibility renewal paperwork every six months just to stay on Medicaid, beginning October 1, 2017. Thus, states can continue to cover this group, but only at regular matching rates and, this, coupled with the stringent re-determination requirements for this group, will effectively repeal the coverage (CBO estimates only 5 percent will be left in this group by 2024). NHeLP issued a separate fact sheet on this issue.

3. Repeals Mandatory Medicaid Coverage for Children ages 6-18 over 100% FPL. The ACA requires states to provide Medicaid coverage to all children ages from birth to age 19 under 138% of the Federal Poverty Level (FPL). Prior to the ACA, states had to cover children ages 0-5 years old up to 133% FPL but states only had to cover children ages 6-19 (or up to 21 at state option) up to 100% FPL. AHCA lowers the eligibility level for children ages 6-19 from 133% FPL back to 100% FPL. This means that (in some states) children may lose their Medicaid and can only be enrolled in CHIP or be uninsured. These children may get fewer benefits than on Medicaid and may not receive all services they need to correct or ameliorate their medical or mental health conditions.

4. Repeals Presumptive Eligibility for the Medicaid Expansion Population and Repeals Hospital Presumptive Eligibility for Everyone. In addition to repealing the Medicaid expansion, AHCA prevents states from using “presumptive eligibility” for non-pregnant childless adults after January 1, 2020 even if a state chose to continue covering non-pregnant childless adults under its regular Medicaid funding. Further, AHCA repeals the ability of states to use Hospital Presumptive eligibility to enroll any individual in Medicaid.

5. Eliminates Retroactive Eligibility. Medicaid currently provides coverage up to three months before the month an individual applies for coverage. This “retroactive coverage” protects individuals from medical expenses they incurred before they apply for Medicaid. An individual may not be able to apply for Medicaid immediately due to hospitalization, a disability, or other circumstances and retroactive coverage provides that critical coverage and ensures providers can get reimbursed for their costs and low-income individuals do not end up facing severe medical debt or bankruptcy due to these medical expenses. AHCA repeals this coverage for all Medicaid beneficiaries starting October 1, 2017.

6. Imposes Stricter Citizenship Verification Requirements. Currently Medicaid applicants must provide documentation of their citizenship or nationality to enroll in Medicaid, but can access health care services while waiting for verification. Beginning 6 months after this bill is enacted, AHCA would prevent states from obtaining reimbursement for any services received while an individual is obtaining the necessary documentation (called a “reasonable opportunity period”) even if the individual meets all other Medicaid eligibility requirements and attests to his or her citizenship status. It is likely that states will also elect to delay eligibility until after documentation is verified so they do not have to pay 100% of the costs during the reasonable opportunity period.

7. Imposes New Financial Limits on Medicaid Waivers. States may seek waivers from the federal government allowing the state to stop having to follow certain federal Medicaid requirements so the state can test experimental, pilot, or demonstration projects that promote the objectives of the Medicaid program. Normally, states would have to ensure this would be “budget neutral” to the federal government over the course of the waiver period (typically five years), thus, can spend more federal funds up front to build new infrastructure or provide more intensive services. AHCA takes away states’ flexibility to spend these waiver funds up front by imposing yearly budget caps.

8. Repeals Essential Health Benefits (EHBs) for Medicaid Expansion Beneficiaries. Under the ACA, states that expanded coverage to non-pregnant childless adults had to provide coverage in at least the 10 “essential health benefit” categories. AHCA repeals this requirement, which will no longer apply after December 31, 2019, resulting in beneficiaries losing services such as mental health and substance use disorder services, and losing access to some free preventive health services.

9. Repeals Enhanced Funding for States for Community First Choice (CFC) Attendant Supports. Established under the ACA, the “Community First Choice Option” allows States to provide home and community-based attendant services and supports to eligible Medicaid enrollees under their State Medicaid Plan. CFC funds assist individuals with Activities of Daily Living (ADLs), habilitative services and emergency back-up systems like electronic indicators. CFC also gives states the option to cover many of the costs of transitioning individuals from institutional care to supported community living, including rent deposits, moving expenses and some nonmedical transportation. Some of these services compliment the transition services. AHCA repeals the 6% increase in funds established to cover these services starting January 1, 2020.

10. Limits Home Equity Exclusions. Currently, individuals needing nursing home or other long-term care services must have home equity below a certain limit to qualify for those Medicaid services. States can exclude up to $750,000 of these individuals’ home equity. AHCA prohibits states from exceeding $500,000 of home equity, starting 6 months after the bill is enacted into law, potentially limiting the availability of nursing home and other long term care services to individuals who may live in high-cost areas and have substantial home equity but limited income and other assets.

Changing the financing of Medicaid from a guarantee (or “entitlement”) to a per capita cap and these other changes to Medicaid threaten everyone — enrollees who receive services, health care providers who provide care through Medicaid, families who live and work without the worry of providing expensive care to a child with a debilitating illness or an older adult who needs home care or nursing home care, and all communities which benefit from the jobs created and the federal dollars flowing into our state economies. Cutting $880 billion in federal funding and 14 million individuals off Medicaid creates significant financial hardship for states and is devastating for low-income and vulnerable people everywhere. No one can afford these changes.

What the CBO Score means for Colorado

This is a reprint published by The Colorado Center on Law and Policy (CCLP).  CCLP is a nonprofit, non-partisan research and advocacy organization that engages in legislative, administrative and legal advocacy on behalf of low-income Coloradans.

Yesterday, the Congressional Budget Office and the staff of the Joint Committee on Taxation estimated that the House Republicans’ American Health Care Act would increase the number of uninsured Americans by 24 million over the next 10 years, result in big reductions in assistance for lower-income consumers who purchase insurance on the state exchange, and lead to a precipitous 25 percent drop in federal funding for Medicaid over 10 years. Read this analysis from CCLP’s Bethany Pray and this fact sheet for more details.
The short-term changes from theAct would be significant. With 14 million Americans projected to be uninsured just one year from now, approximately 238,000 more Coloradans could lose or forgo coverage. The repeal of the mandate to purchase insurance would be one factor in people’s decision-making. Those most likely to drop coverage would be younger Coloradans, while those with greater health needs would have reason to stay in. When carriers have to pay more for a typical enrollee, they raise premiums. That shift in the health status of those who are covered is projected to increase premium rates in 2018 and 2019 by 15 to 20 percent. These and successive drops in coverage will return Colorado to a scenario where hospitals must cover increasing amounts of uncompensated care, and that drives up costs for everyone.

You can learn more through the Protect Our Care Colorado website.