BY LAUREN AGORATUS, M.A.
The Affordable Care Act (ACA) affects children with special needs and disabilities in many ways. This article provides an overview of some ACA-related topics relevant to children and youth with special health care needs (CYSHCN) and their families. It is based on a series of posts in the ACA blog published by the National Center for Family Professional Partnerships (NCFPP). The NCFPP is a project of Family Voices, operated through a cooperative agreement with the Maternal and Child Health Bureau of the Health Resources and Services Administration (HRSA), US Department of Health and Human Services.
The goal of the NCFPP is to improve health care delivery and quality of life for all children with special health care needs and their families by supporting families to serve in leadership roles. Family Voices is a national nonprofit organization of and for families of CYSHCN which seeks to ensure that all children and youth with special needs receive family-centered, quality, timely, and appropriate care in a linguistically and culturally competent manner. Below are links to resources and information about some ACA related issues of special interest to families of children and youth with special healthcare needs or disabilities.
ACCESSIBILITY ISSUES
The purchase of health insurance is made through a website, so families and people with disabilities need to be able to access and read the content of the website; for more information on accessibility go to: www.healthcare.gov/accessibility/. Families also need to have access to telephone and in-person assistance that may be needed to help them enroll. New regulations will require that health plans available through the website provide information on the physical accessibility of physician’s offices.
People with disabilities may be eligible for Medicaid or Medicare and the Marketplace will determine that as well.
FINDING PROVIDERS
One challenge for families is finding out if their child’s doctors are in a health plan’s network. A new tool to allow parents to search and compare plans can be found at: www.healthcare.gov/see-plans/. It is important to note that even if a hospital is in-network, some of the professionals who provide care (e.g., anesthesiologists) may not be in-network. To avoid surprise medical bills, it is important for families to make sure that each provider who may provide care to their child in that hospital is in the plan’s network. Families should check with each of their child’s providers to see which plans they
participate in. (Plans’ provider directories are not always accurate.)
If families are using Medicaid, in some states, they may need to get an “out-of-state” authorization for care. Please note that even if providers don’t participate in Medicaid, when Medicaid is secondary, often it can be billed as out of network. In addition, families may be able to get reimbursed for out-of-state Medicaid formulary medications.
BENEFITS
To find out if their child’s medications, equipment, and other services are covered by a plan, families should check the “Summary of Benefits and Coverage” (SBC) for that plan. The SBC will lay out the services covered by that plan, the coinsurance or copays, and any limitations on the benefits. Every plan must use the same format for its SBC so that plans can easily be compared. For more information about, and a sample SBC, see www.healthcare. gov/health-care-law-protections/summary-of-benefits-andcoverage/.
MENTAL HEALTH
Under the ACA, one of the “essential health benefits” that plans must provide is “Mental health and substance use disorder services, including behavioral health treatment.” For more information, go to: www.healthcare.gov/coverage/mental-health-substanceabuse-coverage/. The federal law requiring mental health “parity” (covering mental health on par with physical health) should make it easier for families to access mental health services.
PHYSICAL, OCCUPATIONAL, AND SPEECH THERAPY
Before the ACA, many insurance companies didn’t cover “developmental” therapies for children under the ACA, however, health plans must cover “rehabilitative and habilitative services and devices.” This means that services to help a child learn new skills (habilitative services), such as occupational, physical and speech therapies, must be included in health plan benefits, as well as rehabilitative services and devices to restore lost skills. Habilitative and rehabilitative therapies must be medically necessary and plans may still place limits on them (e.g., number of therapy sessions). However, habilitative services and devices may not have limits that are less favorable than limits for rehabilitative services and devices. Plan years beginning after January 1, 2017, must have separate limits on habilitative and rehabilitative services.
(Another possible avenue for children to be eligible for therapy services may be through “related services” on their Individualized Education Program in school).
WELLNESS / PREVENTION
Many preventive services, such as immunizations, are now provided free of charge to families. Vision care is one of the essential health benefits. It is important to note that some plans cover oral health, and that there are also “stand alone” dental plans available in the Marketplace.
LOSING COVERAGE
Discrepancies in documentation can occur. If this happens, families can call the Marketplace at (800) 318-2596 or find local help at https://localhelp.healthcare.gov/#intro. There are various options for children aging out including Marketplace plans up until age 26 (or older if required by state law). Children may also be eligible for Medicaid or Medicare. In addition, children with developmental disabilities can be covered by a parent’s plan indefinitely under the disabled dependent provision. Families should ask their human resources department about this option.
ELIGIBLE, BUT NOT ENROLLED
Many families may not realize that their children are eligible for coverage. In mixed immigrant families, even if parents are ineligible, their children may be found eligible; see www.healthcare.gov/immigrants/immigration-status/. Some children may also be eligible for Medicaid or be covered by insurance through the Children’s Health Insurance Program; see www.healthcare.gov/immigrants/. In addition, families may be eligible for coverage if their circumstances have changed such as getting married, having a child, or losing a job and benefits. To learn more about specific circumstances that allow children to qualify for special enrollment outside of the regular enrollment timeframe each year go to: www.healthcare.gov/reporting-changes/. It is important to note that Medicaid enrollment is available year round.
All of these topics, and many others, have been covered in detail in the NCFPP’s monthly ACA blog posts. Go to www.fv-ncfpp.org/blog. For additional information and assistance about the ACA, Medicaid, CHIP, and private insurance, families can contact their state’s Family-to-Family Health Information Center. Find the organization in your state by going to: www.fv-ncfpp.org/ •
The ACA Tip Sheets and Blog were developed with funding from the Health Resources and Services Administration (HRSA)/Maternal and Child Health Bureau (MCHB)/Division of Services for Children with Special Health Needs (DSCSHN), through cooperative agreement #U40MC00149
Family Voices, Inc., 3701 San Mateo Blvd. NE, Suite 103, Albuquerque, NM 87110. Phone: (505) 872-4774 or (888) 835-5669; Fax: (505) 872-4780; www.familyvoices.org
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org.
