According to Autism Speaks, “The costs of providing care for each person with autism affected by intellectual disability through his or her lifespan are $2.3 million in the U.S.” According to Families USA, 60% of bankruptcies are due to medical debt. The Catalyst Center report “Breaking the Link” shows that 2 million families of children with special needs experience financial hardship, regardless of previous financial status (see http://hdwg.org/sites/default/files/resources/Catalyst_Center_Breaking_The_Link.pdf.) So families of children on the spectrum are struggling – not just to get their children the services they need, but to stay afloat financially.
In the Beginning
Early intervention from birth to age three has the best chance at improving outcomes. Families can request an evaluation for eligibility for services. Contacts for early intervention in each state can be found at the National Early Childhood Technical Assistance Center (NECTAC) website at www.nectac.org, which also gives a description of early intervention services. Unfortunately, some states have a “cost share” for families on a sliding fee scale and some families have had to cut back on services. However, the Individuals with Disabilities Education Act (IDEA) that governs early intervention (and special education) requires that families be provided with services at no cost if they have an inability to pay for services.
Federal law allows early intervention programs to access public and private insurance as long as it does not disadvantage families. Children may have traditional indemnity plans through their parents’ employers, Medicaid, or both. Families should remember to appeal denied claims as only 1/3 of claims are appealed and 50% of the time they are turned around in favor of the family on their first appeal. If children have Medicaid, their secondary insurance will pick up what the primary insurance doesn’t cover. More services may actually be available under Medicaid due to Early Periodic Screening Diagnostic and Treatment (EPSDT) – see http://mchb.hrsa.gov/epsdt/overview.html. Unfortunately, many children aren’t eligible for Medicaid and/or Supplemental Security Income until age 18 when parental income is no longer deemed to be the income of their child.
Many states also have autism insurance mandates (one state, New Jersey, has a mandate that covers children with autism and other developmental disabilities). However, these mandates are usually not comprehensive. In NJ, the law only covers approximately 25% of health insurance plans because it does not apply to “ERISA” or self-insured plans, which are a majority of plans in NJ. So although a good first step, insurance mandate laws may not be enough. For information on autism coverage in each state, see www.autismspeaks.org/advocacy/states. Other mandates that may help are mental health parity, both nationally and in states. This means that coverage for mental health disabilities must be on par with that of physical health. “Biologically-based” is often used to determine coverage.
Lastly, health insurance reform, which went into effect for children 9/23/10, is helping families of children on the spectrum. The Affordable Care Act (ACA) eliminated lifetime limits and limited annual caps of coverage. Policies could no longer be rescinded due to illness and children with pre-existing conditions could not be denied coverage. There is some confusion over the ACA provision of Essential Health Benefits, which include “Mental health and substance use disorder services, including behavioral health treatment” (www.cms.gov/CCIIO/Resources/Fact-Sheets-and-FAQs/ehb-2-20-2013.html). Advocates are seeking clarification on what is meant by “behavioral health” as it relates to autism. Another good resource on maximizing insurance coverage for children with autism is found at www.autismnj.org/document.doc?id=26. Some states even have funding for families for “catastrophic illness” which could cover medical bills, mileage/tolls/parking, phone calls, and hotels (for long hospitalizations). For more information, families can contact the Title V program in their state at http://mchb.hrsa.gov/programs/titlevgrants/.
Other Help for Families: Supplemental Security Income
Besides insurance, as mentioned above, children may be eligible for Supplemental Security Income. For information on SSI, see www.socialsecurity.gov/ssi/text-child-ussi.htm. Even if a child isn’t eligible due to family income, they can reapply at age 18.
Once children reach age 3, they may be eligible for preschool disability services until they graduate or age out of the special education system (usually at age 21). Related services can include speech, occupational, physical therapies, sensory integration, social skills, etc. Although districts may ask for parental consent to access insurance, they still must provide related services in the child’s Individualized Education Program even if families deny consent. If families have questions about school related services, they can contact the Parent Training and Information Center in their state at www.parentcenternetwork.org.
Developmental Disabilities Services
States may also have services for children and adults with Developmental Disabilities. In the past, for example, NJ’s services included respite, camp funds, cash stipends, home modifications, behaviorists, etc. Families can get information from their Governor’s Council on Developmental Disabilities found at www.nacdd.org/about-nacdd/councils-on-developmental-disabilities.aspx. Families in some states may also be eligible for Personal Care Assistance to help their child with ADLs (activities of daily living). To find a consumer-directed care program, visit http://web.bc.edu/libtools/insights-publications.php.
Special Needs Trusts
Lastly, families may need to develop a special needs trust to prevent the possible loss of eligibility for programs like Medicaid and SSI. This will also help protect the child’s future. For more information, please visit www.pacer.org/publications/possibilities/saving-for-your-childs-future-needs-part1.html.
Centers for Independent Living
The last step is to maximize the child’s independence. Centers for independent living help with independent living skills such as life skills, vocational assessment, housing, transportation, etc. They can also help consumers access resources for independent living, such as filling out applications for services or employment, and can be found at www.ncil.org.
Families of children with autism spectrum disorders need to utilize resources to ensure that their child gets the services they need. By planning financially, they can help their child reach their best potential, without sacrificing their family’s financial stability.
Lauren Agoratus is the parent of a child with autism/kidney disease. She is the NJ Coordinator of Family Voices, the national network that works to keep families at the center of children’s health care for children with special healthcare needs; in NJ, Family Voices is housed at the Statewide Parent Advocacy Network (SPAN), www.spanadvocacy.org. SPAN is also the home of the state’s Family-to-Family Health Information Center. Lauren can be reached at (800) 654-SPAN or by email at firstname.lastname@example.org. Families can find free help in their state at www.familyvoices.org/states.php.