Many families of children with special needs have had difficulty in the past in getting important therapies for their children, such as speech, physical, and occupational therapy. The insurance companies would deny therapy as “habilitative,” which meant it was an educational or developmental issue. We’ve even heard a case in which the child had a long-term but terminal illness (life expectancy was late teens/early adulthood) and the carrier told the mother over the phone that therapy was denied for her 8-year old boy “because he was going to die anyway”! Insurance companies traditionally covered only restorative services, such as teaching someone who had a car accident to walk again or helping someone who had a stroke to speak again. So basically it has been easier to get benefits to regain lost skills. Thus, the question becomes: how are children with special needs going to develop these skills without therapy?
The Affordable Care Act (ACA) recognizes the difficulty that people with disabilities have encountered in accessing rehabilitative and habilitative services and, under this law, most children with disabilities will now have better coverage. Rehabilitative and habilitative services and devices are one of the ten “Essential Health Benefits (EHBs)” mandated by the ACA. Please note that EHBs for children also include vision and dental care.
The National Disability Navigator Resource Collaborative has developed an excellent factsheet, “Rehabilitation and Habilitation Services and Devices.” Although this factsheet was developed for Navigators helping to enroll families, it has good information for parents as well. It explains that rehabilitation and habilitation can slow the progression of the condition, and assist in maintaining function or gaining new skills. Examples are given of rehabilitation (i.e., to regain function) as well as habilitation (i.e., to attain or improve skills.) Both are important for activities of daily living (e.g., personal care such as bathing, dressing, etc.). There are also examples given of “devices” that can help make therapy more successful, such as walkers, augmentative communication devices, pencil or silverware grippers, etc.
It is important for families to compare Qualified Health Plans (QHPs) in the Marketplace to determine the benefits they cover. States were allowed flexibility to use a “benchmark” or model plan in that state to determine the details of the benefits that must be covered in each EHB category. In cases where the benchmark plan does not cover “habilitation” services, the state or the individual QHP will determine the specifics of habilitation services to be covered. Therefore, when selecting a plan, it is important to look at both what benefits are available and any limitations on those benefits, such as number of visits or the timeframe allowed. The same holds true for Durable Medical Equipment (DME), such as wheelchairs, because states used their model plans for this as well. Consumers must check what is covered and compare plans
Even though enrollment in the healthcare marketplace/exchange is over until the fall (unless there are special circumstances), families need to know what their new plans cover. Also, this information will help them determine whether they should change plans during the next open enrollment period. Families can compare plans in the Marketplace by looking at the “Summary of Benefits and Coverage” for each plan. There is also a state-by-state list (see “Resources” sidebar) of Essential Health Benefits available from the Centers for Medicaid and Medicare Center for Consumer Information and Insurance Oversight (CCIIO.) Parents can contact member services at their plan for more detailed information (for a link to tips, see “Resources” sidebar on this page).
Families of children with disabilities should benefit from the ACA because of its patient protections. In addition, parents of children with special health care needs should now have easier access to therapies such as speech, occupational, and physical therapy, as these are among the ACA’s Essential Health Benefits, which will improve outcomes for children.
Lauren Agoratus is the parent of a child with multiple disabilities who serves as the NJ Coordinator for Family Voices. She also serves as the southern coordinator in her state’s Family-to-Family Health Information Center.