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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.

State of Colorado Legislative News

See Legislative news below from our friends at the Colorado Center on Law and Policy! Have a great weekend!

CCLP Heads-Up recaps and previews developing issues of interest regarding the health, economic security and well-being of low-income Coloradans. The newsletter is published regularly by the Colorado Center on Law and Policy, a nonprofit, nonpartisan organization that advances the health and economic security of low-income Coloradans through research, education, advocacy and litigation.

Medicaid issues warrant notice

Three bills that were recommended and developed by CCLP and the Colorado Cross-Disability Coalition (CCDC) will be considered by Colorado legislators next week. House Bills 1126 and 1143 are scheduled to be heard by the House Public Health Care & Human Services Committee, Feb. 14 at 1:30 p.m. at the State Capitol. A related measure, Senate Bill 121, is slated to be reviewed by the Senate Health & Human Services Committee’s on Feb. 16 at 1:30 p.m.
The bills, which received bipartisan sponsorship, are intended to address shortcomings in client correspondence and notifications when Medicaid benefits are about to be changed or terminated. An interim committee held three hearings about Medicaid correspondence last summer, which included testimony from CCLP, CCDC, and the Colorado Department of Health Care Policy and Financing.

Currently, Medicaid recipients are supposed to receive notice with information about how to appeal changes or termination of their benefits if they believe the action is unjustified. In practice, however, these notices are often vague and confusing. Most do not specify why benefits are being terminated or reduced, so Medicaid clients don’t always know whether they should challenge the decision. Furthermore, without proper notice, those who appeal may be unable to fully prepare their case.

Sponsored by Rep. Jessie Danielson, D-Wheat Ridge, and Sen. Larry Crowder, R-Alamosa, HB 1126 would ensure that an administrative law judge reviews the sufficiency of Medicaid termination notices at the beginning of an appeal hearing. The bill also requires the judge to inform the client of his or her option to receive an improved notice with the possibility of maintaining benefits, or proceed with their hearing.

Sponsored by Rep. Lois Landgraf, R-Fountain, and Sen. Crowder, HB 1143 would direct the state to audit communications with Medicaid clients. These audits would review the notices for legal sufficiency, clarity and accuracy. Audit findings, conclusions and recommendations will be presented to legislative committees, which can then consider whether the results warrant further reforms.

Finally, SB 121, sponsored by Sen. Kevin Lundberg, R-Berthoud and Sen. Crowder, requires the Colorado Department of Health Care Policy and Financing to engage in a process to improve Medicaid client communications – including client letters and notices – that addresses denial, reduction, suspension, or termination of Medicaid benefits.

Collectively, these proposals will help ensure that Medicaid clients do not lose access to health care due to the shortcomings in the current notification process.

HOW THE ACA (OBAMACARE) HELPS CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS

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.