Action Alert: Protect the ACA and Medicaid



This document was developed to assist you in understanding how significant changes to Medicaid and the Affordable Care Act (ACA) could affect you and your family. It is important for you to understand what is included to help you make informed decisions.

We know and are aware that for many families, the ACA was cost prohibitive. There are still protections and benefits that affect many children.

Family Voices of Indiana 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 it with a picture to projects@fvindiana.org

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

US Capitol Switchboard (202) 224-3121. Senators for Indiana are Senator Donnelly and Senator Young. Find your Representative here: http://www.house.gov/representatives/

Time is of the essence, they may well start the process of attempting to make these changes after the spring recess.


Nearly 20 percent of U.S. children (14.6 million children under age 18) have special health care needs, encompassing a broad range of chronic illnesses and/or disabilities (e.g., cerebral palsy, autism, mental illness, traumatic brain injury).  Many of these children rely on Medicaid and the ACA to get the care they need. One in five families with children has at least one child with special health care needs (CYSHCN).  These families rely on Medicaid and/or the ACA to protect them from medical debt or bankruptcy. Therefore, Family Voices urges Members of Congress to do no harm to children: 
¨      Reject Medicaid per capita caps or block grants. 
¨   Preserve ACA protections and health benefits.

Medicaid is vital for CYSHCN and their families:

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.

Currently, 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 (in IN that is Hoosier Healthwise), parents, pregnant women, seniors, and people with disabilities. States may also offer coverage for “optional” populations including “carve-out” waivers; such as The HCBS waivers: Aged & Disabled, Traumatic Brain Injury, Family Supports, and Community Integration and Habilitation.  These are Medicaid waivers that provide home and community based services for eligible individuals who meet the necessary criteria. They allow beneficiaries to receive long-term health care benefits at home or in community settings outside of institutional settings. If your child is on a Medicaid waiver, family income guidelines under the traditional Medicaid program are waived.  As a reminder, if you receive Medicaid, you are receiving Medicaid under one of the options above. Many families are either income eligible or receive Medicaid through one of the waivers listed above.

First Steps (early intervention 0-3) is also funded by Medicaid. In schools, services for children of school age receiving special education may be funded by Medicaid. Medicaid also insures long term supports and services.

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 (as listed above) and including 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.

For many; Medicaid is a “Lifeline”
·         About 43.4 % 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. In ND this could include 20,000 or more children.

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 (e.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.

Please contact your Senators and Representative. Ask family and friends to do the same. Share your VOICE to protect healthcare for our children.

US Capitol Switchboard (202) 224-3121. Senators for Indiana are Senator Donnelly and Senator Young. Find your Representative here: http://www.house.gov/representatives/

Thanks to Family Voices North Dakota for allowing us to use this document.



Comments